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Introduction

At the heart of new legislation is an imperative to understand the distinctive nature of

disabled people’s oppression. Only then can we tackle the discrimination they face. Disability equality will therefore be important to those faced with the job of challenging inequality

within our services. This book presents clear ideas and simple steps that will help you ensure that disabled people are fully respected and included in the

life of your organisation.

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Exploring accountability, human rights and legitimacy from a disability equality perspective

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Exploring accountability, human rights and legitimacy from a disability equality perspective

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Matters of sustainability rarely deal with issues of disability from an equitable perspective - that is, putting disabled people’s voices within a wider conversation that informs mainstream debate. As a group, the disabled population are ignored; a silencing imposed on them as untrustworthy speakers, and thereby denied a role as authors of knowledge marginalises them.

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Prosperity and Justice: A Plan for the New Economy is published as a book by Polity Press in association with IPPR 

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Prosperity and Justice: A Plan for the New Economy is published as a book by Polity Press in association with IPPR 

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report argues that a fair economy is a strong economy: prosperity and justice can, and must, go hand-in-hand.

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Prosperity and justice: A plan for the new economy - The final report of the IPPR Commission on Economic Justice

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Established in autumn 2016 in the wake of Britain's vote to leave the European Union, the aim of the IPPR Commission on Economic Justice was to examine the challenges facing the UK economy and to ...

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Sam Clark: ‘Abuse of learning disabled people won’t stop until we all matter equally’ | Society | The Guardian

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Sam Clark: 'Abuse of learning disabled people won't stop until we all matter equally'

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The head of Learning Disability England says attitudes are partly to blame for care failures

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‘It’s horrifically painful’: the disabled women forced into unnecessary surgery

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‘It’s horrifically painful’: the disabled women forced into unnecessary surgery

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As she is unable to get out of her wheelchair herself, standard disabled toilets in Britain – which have only grab rails and no hoist to help lift someone – are inaccessible to her. “I feel like I’m chained to a toilet,” Anderson says from her home in Bolton. “It dominates my life.”

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Fi Anderson has, over the years, developed what she calls "pee math". Through trial and error, she has learned that the only way she can be out of the house from 9am to 5pm without needing the toilet is to limit her fluid intake to one and a half child-size cups per day. It has taken her years to train herself to survive on such a small amount of liquid and she has tricks to get past the thirst, including chewing gum to produce more saliva.

The 29-year-old has muscular dystrophy and has busy, active days: she is a mum to two young daughters and runs a charity, the Minicore Project, which she founded for those with her disability. But, for decades, what she can do and where she can go has been dictated by toilet provision. As she is unable to get out of her wheelchair herself, standard disabled toilets in Britain - which have only grab rails and no hoist to help lift someone - are inaccessible to her. "I feel like I'm chained to a toilet," Anderson says from her home in Bolton. "It dominates my life."

It means leaving the house for more than a couple of hours - say, to go to the cinema, to go shopping or to eat at a restaurant - is often impossible. "I quickly realised that, if I drank normally, I'd need to leave wherever I was abruptly and get home as fast as possible to go to the toilet."

Forcing her bladder to work like this has taken a toll on her health and she is now faced with a desperate surgical solution. Ten years ago, she began to get back-to-back urinary tract infections and has since had so many that she is in a constant state of infection: feverish on and off throughout the week, fatigued and weak, and resistant to antibiotics.

She had to start wearing adult nappies to be able to go out. "I felt humiliated having to ask my carers to put them on me," she says. Once, when she was delayed coming home from a hospital appointment in Manchester, she had to sit in her used nappy for five hours.

With no other option, she is about to have surgery to insert a suprapubic catheter. This involves an incision in the lower stomach to the bladder and the insertion of a catheter tube and balloon. It will mean that she will be able to use standard accessible toilets, as she will be able to urinate without getting out of her wheelchair. But the surgery is potentially dangerous: because of her weakened respiratory system, Anderson can't have a general anaesthetic and there is a risk that, even with local anaesthesia, she could end up in intensive care with breathing difficulties brought on by pain or complications. She will need to be awake throughout the surgery and attached to a ventilator to breathe.

Anderson's doctors term her situation "social incontinence". She has full control of her bladder - no physical incontinence - but simply lacks the ability to urinate because there aren't toilets suitable for her in public. And she is far from alone. There are 250,000 disabled people in the UK who cannot use standard accessible toilets. The solution for Anderson and other disabled people should be simple: what is known as a " changing places" toilet, a facility fully accessible for all disabled people that features an adult-sized changing bench and a hoist. But there is a chronic shortage of these in public spaces. With just over 1,000 across the country, it is common for the nearest accessible loo to be two or more hours away.

Campaigners want fully accessible toilets to be installed in public places such as large railway stations, airports and motorway services. Last month, the government announced £2m for changing places facilities at motorway services. But there is still a long way to go. Recently, Marks & Spencer came under fire for launching a range of clothes for disabled children but not having adequate disabled toilets in any of its stores.

It is easy to dismiss such facilities as too costly or relatively unimportant, but Lorna Fillingham, a campaigner who handed in a petition to Downing Street in February, calling on the government to do more to address the problem, says this is a critical issue. "Disabled people and their carers are being put at risk of both physical and emotional harm all day, every day, throughout the UK, as many towns and cities don't have a single registered changing places toilet facility," she says.

Fillingham's seven-year-old daughter uses a wheelchair and she says many disabled children like hers are being changed on dirty public toilet floors because of a lack of facilities. Children who are often immuno-suppressed due to underlying conditions such as cancer or who have equipment, such as feeding tubes, need to use clean facilities. "Disabled teenagers and adults who can't be lifted are forced to sit in their own urine or faeces," she adds. "[None] of that should be happening in a civilised country in the 21st century."

The alternatives to decent toilet provision are all degrading. While disabled men who can't use standard disabled toilets have told me of having to go into a cubicle and urinate in a plastic bottle, women are, of course, unable to use this option. As I began to investigate this, it emerged a number of women such as Anderson are taking the drastic step of having medically unnecessary surgery to avoid being confined to their homes.

Marni Smyth, 23, had catheter surgery three years ago. She has type 2 spinal muscular atrophy, which means she is unable to lift herself out of her wheelchair; she is doing a PhD in art and design at the University of Huddersfield. Like many students, Smyth has always enjoyed going to bars and clubs with friends, but, with no changing places facility in the town centre, if she needed the toilet on a night out she had to go home. (Since she had her operation, Trinity Leeds shopping centre has opened, with a changing places toilet, but it is not available at night once the centre has closed.)

Like Anderson, Smyth tried to restrict her fluids to go out, but became constantly dehydrated, to the extent that her hair thinned. She tells me she still has dark circles under her eyes from the damage. "That will probably never go now, which affects my confidence without makeup."

Surgery seemed the only way out. "Toileting was literally affecting every aspect of my life," Smyth says. "It was the only choice, other than carrying on living with such restrictions."

Carrie Aimes knows surgery is far from an easy way out. The 29-year-old from Worcestershire has scoliosis and joint contractures, which mean she is unable to lift herself from her wheelchair. Throughout school and university, she would spend "all day, every day" strictly limiting her fluid intake or being able to go out of the house only for a few hours. At other times, her mother, who has arthritis, had to struggle to lift Aimes on to standard toilets. "It was degrading and dangerous," Aimes says. "I've been dropped on the floors of public toilets due to the lack of facilities."

In 2011, through "sheer desperation", she elected to have surgery for a catheter, despite it being medically unnecessary. This was dangerous: she had the operation under general anaesthetic at severe risk to her poor lung function. Having got through the surgery, she is now able to use standard disabled toilets, but has to take medication to avoid becoming incontinent because of a reaction to the catheter. "Your bladder recognises it as a foreign object and therefore constantly tries to expel it," she explains.

Every four to five weeks, Aimes has to have her catheter changed under local anaesthetic. Her catheter has become "stuck" several times - meaning it couldn't be changed - and she had to have multiple surgeries to fix it, each time under general anaesthetic. "Before each routine appointment, I would feel sick with anxiety, not knowing if my catheter would get stuck, thereby necessitating yet another surgical procedure," she says.

Aimes has since changed urology teams and has so far avoided further surgery, but she stresses a catheter is "by no means a fix-it solution". "But it's something I must endure, since the only alternative is to return to how I was before," she adds.

Over the past three decades, Britain has made great progress in adapting leisure and sports venues, transport and the high street to be increasingly accessible for disabled people. Fully accessible toilets are surely the next, long-overdue step. After all, this is not simply about toilets; it is a question of whether disabled people are seen as fully-fledged members of society, who have the right to enter public spaces like anyone else.

In Bolton, Anderson is on the waiting list for surgery. She tells me she is frightened about being awake for it - others with her condition who have had the procedure have told her it is "the most horrifically painful thing". But right now, she has no other choice.
Topics

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'It's horrifically painful': the disabled women forced into unnecessary surgery

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Fi Anderson has, over the years, developed what she calls "pee math". Through trial and error, she has learned that the only way she can be out of the house from 9am to 5pm without needing the toilet is to limit her fluid intake to one and a half child-size cups per day.

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ALLFIE campaigner Simone’s “barnstorming” speech to the Global Disability Summit

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ALLFIE campaigner Simone’s “barnstorming” speech to the Global Disability Summit

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Disabled people’s complaint was upheld. The UN disability committee published the findings of an extensive investigation which found evidence of grave and systematic violations of Disabled people’s rights due to welfare reforms. As we expected our arrogant government dismissed these findings.
“We are also calling upon our government to reverse welfare reform measures that have been seriously adversely impacting on Disabled people’s standard of living since 2010."

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You can also read Disability News Service's report of the event here. There is more information about the summit here.

"Hello my name is Simone Aspis - I am Policy and Campaigns Coordinator for the Alliance for Inclusive Education, a member of Reclaiming our Futures Alliance, an umbrella organisation consisting of Disabled people-led organisations.

"Today, the UK government is asking other countries to sign up to a charter which talks about the importance of holding governments to account under the CRPD and yet our government stand in breach of it - hypocrisy!

"In 2016, Inclusion London and DPAC submitted a complaint to the UN Monitoring Committee on how government's austerity plans were fundamentally breaching Disabled people's human rights to independent living, and a decent standard of living and work. The Independent Living Fund, a fund that allowed Disabled people to live independently in their own homes, was going to be withdrawn. This meant for many Disabled people, they would be prisoners in their own homes or forced into institutionalised care, a campaign we fought against over 30 years ago. This was the first time that the CRPD monitoring committee have been asked to investigate complaints under the optional protocol against a state. Disabled people's complaint was upheld. The UN disability committee published the findings of an extensive investigation which found evidence of grave and systematic violations of Disabled people's rights due to welfare reforms. As we expected our arrogant government dismissed these findings.

"In 2017 the routine examination of the UK government's implementation of the CRPD took place. The UN disability committee made over 80 recommendations and commented that in the history of the committee, members have never been as concerned about a country as they are about the UK today. The Chair described the "human catastrophe" caused by the government's "social cuts" as there is continued evidence of deliberate, systematic and dramatic retrogression of Disabled people's human rights.

"The UK government has said for the second time that they do not agree with the findings. The UK government attempted to defend their record, by saying that the state of Disabled people's human rights is worse in other countries. This is government's failure in understanding that the CRPD is about the progressive realisation of Disabled people's human rights.

"UK DPOs [Disabled people's organisations] absolutely welcome the giving of support and aid to our Disabled brothers and sisters in other countries but we must also not let the UK government get away with its deliberate dismissal of its obligations under the CRPD because if one government can get away with it then others will follow.

"We must all make sure that the charter being introduced at the summit does not become a substitute for proper implementation of the CRPD and a way to water down our rights and our ability to hold our governments to account.

"In the UK, DPOs are campaigning for the enshrinement of the CRPD in domestic legislation.

"We call on our government to implement the inquiry recommendations from the UN disability committee, all of which they have dismissed, including carrying out a full cumulative impact assessment of welfare and tax reforms.

"We are also calling upon our government to reverse welfare reform measures that have been seriously adversely impacting on Disabled people's standard of living since 2010.

"We are also calling for a national independent living support service independent of local authorities and funded via general taxation to halt and reverse the re-institutionalisation of Disabled people that is happening here and to meet our rights to Article 19.

"We are also calling for the removal of the reservation on Article 24 and full implementation of Disabled people's human right to inclusive education."

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Read ALLFIE campaigner Simone's "barnstorming" speech to the Global Disability Summit - Allfie

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Simone Aspis spoke at the Civil Society Forum, part of the Disabled People's Summit hosted by the UK government on 23rd July 2018. Her speech, drawing attention to the failures of the UK government recently highlighted by the UN, drew "repeated loud applause".

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“We base our life on work. If you want to buy a house you need work. If you want to start a family you need work. If you want to go out with friends you need an income, you need work. We base our life on our work and we build our lives from it. When you’re in work it’s a stable environment and it gives you the stability. It gives you a meaning, a purpose, place to go, people to see. It’s so much more than the actual physical work itself.” Matthew, 41

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People with learning disabilities face gross inequality in life and death

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People with learning disabilities face gross inequality in life and death

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So not only have people with learning disabilities and their families had to hear these shocking statistics, but they can only conclude from the silence and apparent inaction from the government and major charities that their lives and deaths are valued less than others. In a BBC interview, Sara Ryan, Connor Sparrowhawk’s mother, suggested that British society ought to be honest and upfront about the fact that we don’t care about the lives of people with learning disabilities.

This, of course, does not go far enough in addressing the gross inequality people with learning disabilities experience in life and death, and Dimensions wants to see a robust response from the government that shows it values people with learning disabilities equally to the rest of society.

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Imagine being told your child is statistically likely to die at 58 years old, 26 years before their peers, despite being in the same economic and social group, being born with the same physical health as others and having the same healthcare available - and despite you loving and caring for them in the best way you can.

Imagine being told that you have a 28% chance of dying before you turn 50 and you have a one in eight chance of dying because of treatment delays, gaps in service provision, organisational dysfunction, neglect or abuse.

You'd be forgiven for thinking that this couldn't possibly be the case in Britain in 2018. In Burkina Faso, life expectancy is 60 and healthcare spend is only 5% of GDP. We think of our healthcare system as being one of the best in the world, spending 9.1% of GDP on it. We are a society that values life and upholds human rights. This can't be right. But it is, if you have a learning disability.

The Learning Disability Mortality Review (Leder) - described by the Department of Health and Social Care as "world leading" - was commissioned by NHS England in 2015 after shocking statistics emerged about a lack of investigation into the deaths of people with learning disabilities following the death, in 2013, of Connor Sparrowhawk.

This much-needed review into all reported deaths of people with learning disabilities covered the period from July 2016 to November 2017. However, Leder admits it did not have the resources to properly review all deaths in this period, and reviewed just 103 of the reported 1,311 cases.

The Leder report was released at the start of this month, the morning after local elections and before a bank holiday weekend, with no press release, no statement and no interviews from NHS England or the government. Awkward questions asked by concerned MPs elicited a series of astonishing cock-ups, half-truths and lack of care, but that's it; nothing else but silence.

The fear of litigation and reputational damage on the part of some care providers often prevents transparency

In comparison to the government's response to missed invitations to breast cancer screenings and subsequent public outrage, it was a stark demonstration of who matters in our society.

So not only have people with learning disabilities and their families had to hear these shocking statistics, but they can only conclude from the silence and apparent inaction from the government and major charities that their lives and deaths are valued less than others. In a BBC interview, Sara Ryan, Connor Sparrowhawk's mother, suggested that British society ought to be honest and upfront about the fact that we don't care about the lives of people with learning disabilities.

As one of the largest not-for-profit providers of support to people with learning disabilities and autism, we at Dimensions also need to ensure rigorous scrutiny around deaths, both of those we support and more widely. People with learning disabilities do, of course, die in health and social care settings from natural causes, but the inequalities they experience are clearly contributing to too many premature deaths - and we must apply more scrutiny in understanding why.

Bereaved families need to feel confident to ask the right questions, as do health and social care providers like us. We must not only scrutinise unexpected deaths in care properly, but use the learning to prevent other premature deaths. To do this, we need be more transparent about what we get wrong and what we've learned from it.

The fear of litigation and reputational damage on the part of some health and social care providers often stops this from happening. If our mission is to protect and promote good health and lives, we must find a way to get over this for the sake of those we care for. Reputation should not be more important than saving lives. In my experience, bereaved families only want truth and accountability; we shouldn't need the government to tell us to do this.

Our small contribution was producing the guide Dying to Matter [pdf] on what to do when someone with a learning disability dies unexpectedly in care. It has been written in consultation with families of people with learning disabilities and autism who have died unexpectedly.

This, of course, does not go far enough in addressing the gross inequality people with learning disabilities experience in life and death, and Dimensions wants to see a robust response from the government that shows it values people with learning disabilities equally to the rest of society.

While we wait for this response, my message to people with learning disabilities and their families is that despite how it must often seem, you do matter.

Alicia Wood is head of public affairs for Dimensions and co-chair of Learning Disability England
Join the Social Care Network for comment, analysis and job opportunities, direct to your inbox. Follow us on Twitter (@GdnSocialCare) and like us on Facebook. If you have an idea for a blog, read our guidelines and email your pitch to us at socialcare@theguardian.com If you're looking for a social care job or need to recruit staff, visit Guardian Jobs Topics

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People with learning disabilities face gross inequality in life and death

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Imagine being told your child is statistically likely to die at 58 years old, 26 years before their peers, despite being in the same economic and social group, being born with the same physical health as others and having the same healthcare available - and despite you loving and caring for them in the best way you can.

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We know about the gender pay gap. But what about the disability pay gap?

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We know about the gender pay gap. But what about the disability pay gap?

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Forcing companies to disclose their gender pay gap has been like pulling back the curtain. For the first time, we're seeing the real picture behind the often-secretive world of pay: one in which every industry from academia and local councils to FTSE companies is underpaying women. As part of this, it has been refreshing to see the impact of race and class on the gender gap discussed, despite the fact the gender audit didn't include these factors. But disability hasn't been mentioned at all.

In the UK, there is no complex breakdown of disability pay like the gender pay investigation has provided but what we know shows stark inequality.

The Equality and Human Rights Commission (EHRC) 2017 report found that the disability pay gap - the difference between what non-disabled and disabled workers earn - is 13.6%. On top of that, disabled people are significantly more likely to be unemployed, lose a job and be in low-waged work than non-disabled people. We're also routinely given fewer responsibilities at work and turned down for promotion, or refused the job in the first place.

Disabled people have been painted as workshy, but what is attributed to choice is largely a product of circumstance

Being a disabled woman in the climate of the gender pay gap, then, is like being hit from two sides. Disabled men - particularly those from minority ethnic backgrounds - aren't immune either, in some ways losing the gender advantage afforded to white non-disabled men. Disabled men from the Bangladeshi community, for example, experience a pay gap of a staggering 56% (compared with non-disabled white British men), according to the EHRC.

How can bosses get away with this? As Suzanne Moore points out, women's unequal pay is justified in a myriad ways: from us not trying for competitive roles, to being "too caring". Similarly far-fetched excuses are used when it comes to disabled people. Longstanding prejudice around disability - that we are pitiable, stupid or a burden - creates a climate that permits keeping disabled people in low-waged, junior roles. Even the chancellor, Philip Hammond, last year implied disabled workers were less productive, while the idea we should be paid less than non-disabled people is a persistently mainstream opinion (in 2014, the then welfare minister David Freud suggested disabled workers may be "worth" about £2 an hour ). The message is often, "Forget equal pay - if you're disabled, you should be grateful for having a job at all."

In recent years, disabled people have routinely been painted as workshy by politicians and the media, but what is attributed to choice is largely a product of circumstance. Disabled people are more likely to work part-time, in part because of their health needs, exacerbated by the fact that flexible working is often frowned upon by employers. The benefits system, meanwhile, often penalises people too ill for a full-time job but who take on a few hours a week. I've always worked full-time but because I need more time off sick or to rest, as well as later starts, I know my earning potential is dwarfed by my non-disabled counterparts.

Until we acknowledge the problem, we can't do anything to fix it. John Lewis, for example, is using the gender pay gap news to talk to their employees about flexible working and barriers to job sharing at management level. This is fantastic and would be ideal if it was to look at how these two measures - perfectly suited to many with health problems - would help disabled employees too.

But to really tackle the disability pay gap, we need to look at the wider structural inequalities facing disabled people. We often have to live in inaccessible housing, are cut off from accessible public transport, and are excluded from education, which means a disproportionate number of disabled people don't get qualifications. (Even qualifications aren't enough: a graduate with a work-limiting disability is more likely to not have a job than an unqualified person with no disability.)

Rather than measures to improve things, the government is currently creating extra barriers: hundreds of people have had their car, which they need to get to the office, removed because of benefit cuts; funds that provide in-work support such as sign language interpreters for deaf people have been reduced; and huge cuts in social care budgets have resulted in disabled people losing the assistant who helps them get dressed in the morning.

The gender pay audit means the silence around unequal incomes is finally being broken. Inequality, we are shown, can no longer be hushed away or buried under excuses. Now's the time to bring disabled workers into the conversation.

* Frances Ryan is a Guardian columnist
Topics

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equality and human rights commission (ehrc)

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We know about the gender pay gap. But what about the disability pay gap? | Frances Ryan

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Forcing companies to disclose their gender pay gap has been like pulling back the curtain. For the first time, we're seeing the real picture behind the often-secretive world of pay: one in which every industry from academia and local councils to FTSE companies is underpaying women.

# data[].attributes.attachment_link.readable_text
Forcing companies to disclose their gender pay gap has been like pulling back the curtain. For the first time, we're seeing the real picture behind the often-secretive world of pay: one in which every industry from academia and local councils to FTSE companies is underpaying women. As part of this, it has been refreshing to see the impact of race and class on the gender gap discussed, despite the fact the gender audit didn't include these factors. But disability hasn't been mentioned at all.

In the UK, there is no complex breakdown of disability pay like the gender pay investigation has provided but what we know shows stark inequality.

The Equality and Human Rights Commission (EHRC) 2017 report found that the disability pay gap - the difference between what non-disabled and disabled workers earn - is 13.6%. On top of that, disabled people are significantly more likely to be unemployed, lose a job and be in low-waged work than non-disabled people. We're also routinely given fewer responsibilities at work and turned down for promotion, or refused the job in the first place.

Disabled people have been painted as workshy, but what is attributed to choice is largely a product of circumstance

Being a disabled woman in the climate of the gender pay gap, then, is like being hit from two sides. Disabled men - particularly those from minority ethnic backgrounds - aren't immune either, in some ways losing the gender advantage afforded to white non-disabled men. Disabled men from the Bangladeshi community, for example, experience a pay gap of a staggering 56% (compared with non-disabled white British men), according to the EHRC.

How can bosses get away with this? As Suzanne Moore points out, women's unequal pay is justified in a myriad ways: from us not trying for competitive roles, to being "too caring". Similarly far-fetched excuses are used when it comes to disabled people. Longstanding prejudice around disability - that we are pitiable, stupid or a burden - creates a climate that permits keeping disabled people in low-waged, junior roles. Even the chancellor, Philip Hammond, last year implied disabled workers were less productive, while the idea we should be paid less than non-disabled people is a persistently mainstream opinion (in 2014, the then welfare minister David Freud suggested disabled workers may be "worth" about £2 an hour ). The message is often, "Forget equal pay - if you're disabled, you should be grateful for having a job at all."

In recent years, disabled people have routinely been painted as workshy by politicians and the media, but what is attributed to choice is largely a product of circumstance. Disabled people are more likely to work part-time, in part because of their health needs, exacerbated by the fact that flexible working is often frowned upon by employers. The benefits system, meanwhile, often penalises people too ill for a full-time job but who take on a few hours a week. I've always worked full-time but because I need more time off sick or to rest, as well as later starts, I know my earning potential is dwarfed by my non-disabled counterparts.

Until we acknowledge the problem, we can't do anything to fix it. John Lewis, for example, is using the gender pay gap news to talk to their employees about flexible working and barriers to job sharing at management level. This is fantastic and would be ideal if it was to look at how these two measures - perfectly suited to many with health problems - would help disabled employees too.

But to really tackle the disability pay gap, we need to look at the wider structural inequalities facing disabled people. We often have to live in inaccessible housing, are cut off from accessible public transport, and are excluded from education, which means a disproportionate number of disabled people don't get qualifications. (Even qualifications aren't enough: a graduate with a work-limiting disability is more likely to not have a job than an unqualified person with no disability.)

Rather than measures to improve things, the government is currently creating extra barriers: hundreds of people have had their car, which they need to get to the office, removed because of benefit cuts; funds that provide in-work support such as sign language interpreters for deaf people have been reduced; and huge cuts in social care budgets have resulted in disabled people losing the assistant who helps them get dressed in the morning.

The gender pay audit means the silence around unequal incomes is finally being broken. Inequality, we are shown, can no longer be hushed away or buried under excuses. Now's the time to bring disabled workers into the conversation.

* Frances Ryan is a Guardian columnist
Topics

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equality and human rights commission (ehrc)

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We know about the gender pay gap. But what about the disability pay gap? | Frances Ryan

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Forcing companies to disclose their gender pay gap has been like pulling back the curtain. For the first time, we're seeing the real picture behind the often-secretive world of pay: one in which every industry from academia and local councils to FTSE companies is underpaying women.

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The courier company DPD is to offer all of its drivers sick and holiday pay and will abolish its controversial £150 daily fines for missing work, as part of wholesale reforms to its gig-working model sparked by the death of a driver it charged for attending a medical appointment to treat his diabetes and who later collapsed.

The announcement came six weeks after the Guardian exposed the case of Don Lane, who was delivering parcels for the company on behalf or retailers including Marks & Spencer and John Lewis.

The retailers both raised concerns with the company over how it was treating couriers. Lane's treatment caused anger in Westminster, with Labour describing it as "heartbreaking" and the business secretary, Greg Clark, labelling it "a terrible tragedy".

DPD said on Monday it would offer its 6,000 couriers - more than 5,000 of whom are self-employed piece workers with no employment rights - the right to be classed as workers, with paid holiday, sick pay and access to a pension scheme.

The new self-employed worker contract will offer drivers a choice between being directly employed by DPD or working on a self-employed franchise basis. Drivers who choose direct employment will be paid less per parcel delivered to offset the cost of paid holiday, sick pay and pensions.

In statement, the firm said: "Drivers on this contract will receive some of the protections of being employed, including paid annual leave, pension entitlement and sick pay, but will also be able to realise the benefits of being self-employed, by having a higher earning potential and greater flexibility and choice over how they work."

Lane, 53, from Christchurch in Dorset, missed three appointments with specialists to treat kidney damage from his diabetes because he felt under pressure to cover his round and faced DPD's £150 daily penalties if he did not find cover, his widow told the Guardian. He collapsed at the wheel of his van while on deliveries a few months before he died in January.

Dwain MacDonald, the chief executive of the company, which made £100m in profits last year, said: "We recognise that we need to improve the way we work with our drivers. While the self-employed franchise scheme has benefited thousands of drivers over the past 20 years, it hasn't moved with the times and needs updating. Our plan is to completely transform our overall driver offer, as well as the day-to-day working relationship we have with our drivers."

DPD is one of several courier companies that rely on armies of self-employed drivers. Others include Hermes, UK Mail and Yodel. It is the first to propose such fundamental reforms amid growing concern at the instability caused by the spread of the gig economy model in the UK, under which an estimated 1.1 million people are employed.

DPD appointed David Watts, the former chair of the parliamentary Labour party, and Iain Wright, the former chair of the House of Commons business, energy and industrial strategy select committee, as external advisers on the reforms.

The changes are expected to be introduced in July as part of a new driver code.
Topics

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DPD to offer couriers sick pay and abolish fines after driver's death

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The courier company DPD is to offer all of its drivers sick and holiday pay and will abolish its controversial £150 daily fines for missing work, as part of wholesale reforms to its gig-working model sparked by the death of a driver it charged for attending a medical appointment to treat his diabetes and who later collapsed.

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The Still Minding The Step? report provides further evidence of what disabled people have been saying for the last 20 years.

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The Still Minding The Step? report provides further evidence of what disabled people have been saying for the last 20 years.

There can be no doubt: there is simply not enough wheelchair accessible housing being built in Scotland to adequately meet disabled people's housing needs now and into the future.

The truth is we know very well what the problem is - the research tells us it's going to get worse

Significant numbers of wheelchair users are currently living in homes across Scotland where they cannot wash themselves, use the toilet or get in and out of the house without support.

This is an intolerable situation and a blatant abuse of their human rights.

The failure to build, adapt and allocate accessible homes deprives disabled people and their families of their privacy, autonomy and freedom, puts needless strain on carers, and generates avoidable costs for health and social care services.

It prevents disabled people's full contribution to society and their participation in the economic and social life of their communities.

Why no action?

The truth is we know very well what the problem is. The research tells us it's going to get worse.

We know what it costs our society in terms of missing out on the resources and contributions disabled people could otherwise make and in creating additional costs for already cash-strapped services.

So why are we still debating this? What will it take to get action to address this?

Along with Horizon Housing Association, Inclusion Scotland calls on the Scottish Government to set a national minimum target for the provision of wheelchair accessiblehousing across tenure and back up their commitment to making Scotland fairer for disabled people with action to ensure an adequate supply of suitable homes across Scotland.

Local target setting alone is not going to solve the current under-supply and the projected future need for wheelchair accessible homes across Scotland.

In fact, at present, only 11 per cent of local authorities have set any form of target to ensure the provision of wheelchair accessible housing.

So no more delay and no more excuses. We need action and we need it now.
The author is chief executive of Inclusion Scotland

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Scotland's lack of disabled housing is a blatant abuse of human rights

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The Still Minding The Step? report provides further evidence of what disabled people have been saying for the last 20 years. There can be no doubt: there is simply not enough wheelchair accessible housing being built in Scotland to adequately meet disabled people's housing needs now and into the future.

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Human Rights Budgeting and Budget AnalysisAuthored by Ann Blyberg for the Scottish Human Rights Commission   

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Human Rights Budgeting and Budget AnalysisAuthored by Ann Blyberg for the Scottish Human Rights Commission   

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Enhancing Community-Based Support and Care for Independent Living - Council Conclusions

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Enhancing Community-Based Support and Care for Independent Living - Council Conclusions

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The UK has had a policy of competitive tendering for public services since the 1980s. There is no evidence to support this policy - but plenty of evidence that it has a severe negative impact on social care and human rights.

At the heart of this policy is a set of policy rules, set by central government, forcing local government to tender for public services - effectively selling off disabled people and their support workers at the lowest possible cost. Every few years people are put out to tender, relationships torn up and people's security and rights overturned.

Government calls these rules EU Procurement Rules, however this is misleading. Almost every European country excludes social care from competitive tendering; but the UK Government falsely blames the EU for its own policy.

Competitive tendering became central to all social care (support for people with disabilities and the elderly) after the 1992 NHS & Community Care Act. After this local government had to become a 'purchaser' of services, while the private and non-profit sectors became 'providers'. This policy has created many problems - each of which are getting worse:

1. Lowering costs by cutting frontline salaries - When competing for funding the easiest way to win a contract is to reduce the salaries of frontline staff. However salaries for senior managers have rapidly increased, so the level of income inequality inside organisations is now extreme. For example, the CEO of a charity might be earning £175,000, whilst frontline staff are on minimum wages. Social care has also seen rapid growth in precarious work: zero-hours or short-term contracts. Things have got so bad that many charities can no longer afford to meet minimum legal standards for pay and have been lobbying government to be exempted from these standards.

2. Increased compliance and reduced advocacy - In the past charities acted as advocates for people and for important causes; however today they are too reliant on government funding and most provide no meaningful advocacy. This failure has contributed to deep cuts in social care - 700,000 people have lost support since 2009, a cut of over 40%. This was one of the major reasons why the United Nations recently called the UK Government for using its austerity programme a "human catastrophe" for disabled people.

3. Toxic culture of mistrust and regulation - This process has also created a bureaucratic systems that erodes the quality of the relationships within and between organisations. Anything too warm or human now seems suspicious and contrary to the principles of tendering; only bureaucratic processes are trusted. The spirit of social care is now entirely hostile to its purpose.

4. The death of creativity - Before the era of competitive tendering most innovative work was carried out in the voluntary sector and it was common for charities to cooperate with each other and with government. But today's charities compete with each other for work, just like businesses, and they fear cooperation. Competitive tendering creates organisational chaos, but it is fundamentally conservative.

After 30 years this system is now approaching collapse. There is a return to institutional practices and the collapse of meaningful choice and control as organisations fold or merge.

But the biggest cost of this system is the opportunity cost: for 30 years we have missed the opportunity to do the right thing, to focus on creating inclusive and welcoming communities. Instead of seeing people with disabilities as leaders in the transformation of our communities we have wasted our time: wrapping some people in over-regulated and under-funded services while leaving many others isolated and unsupported.

The alternative is clear enough:

1. Independent living - Treat people as citizens and ensure they have the entitlement to support, which is their human right.

2. Community sourcing - Encourage inclusive communities by respecting and supporting community groups and citizens.

3. Local support - Ensure that local communities have the necessary structures, expertise and information to develop local solutions.

Finland can show us the way. It is one of the few countries who, like the UK, had included social care in the competitive tendering system. But now a mass campaign - Not For Sale - led by disabled people - is forcing the Government to rethink its policy. Disabled people should not be put up for sale, and be sold off for the lowest price. It is time to resist this toxic policy.

A longer version of this article can be found on the Centre for Welfare Reform's website and you can join the group discussing the possibility of launching a UK campaign on Facebook.

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The UK has had a policy of competitive tendering for public services since the 1980s. There is no evidence to support this policy - but plenty of evidence that it has a severe negative impact on social care and human rights.

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There is a "huge danger" that the government's austerity policies are damaging the well-established social and economic rights of disabled people and other groups, according to the chair of a UN human rights committee.
Virginia Bras-Gomes, chair of the UN committee on economic, social and cultural rights (UNCESCR), said there was a "growing concern" among the committee that progress in realising those rights had "come to a standstill", although not just in the UK.

She said her committee believed that developed countries like the UK have "not done enough" to further these rights, and there was also "a huge danger that the protection that has been achieved is now being lost" because of austerity policies and other cuts.

And she said that the failure to protect these rights was sending a worrying "political message" to developing countries, that "universal public policies to protect economic, cultural and social rights are not financially sustainable in the long run".

Bras-Gomes ( pictured) was speaking to Disability News Service (DNS) yesterday (Wednesday) as the Equality and Human Rights Commission (EHRC) launched a new report detailing Britain's progress in implementing the International Covenant on Economic, Social and Cultural Rights (ICESCR).

The covenant includes rights to work, including safe and healthy working conditions, to social security and an adequate standard of living, to the highest attainable standard of physical and mental health, and to education and cultural life, and it was ratified by the UK in 1976.

Bras-Gomes told DNS that the government appeared to "know what the difficulties are" - including migration and an ageing population - but she said: "What I don't see happening in many countries, including the UK, is that not everything is being done to use the resources the country has to deal with the difficulties.

"There is a growing defiance on the part of developed countries to say, 'look at all the difficulties we face, we cannot go beyond what we have done already.'

"All over [including the UK]we see a major push towards making entitlement [to social security]conditions more stringent and lowering the level of benefits."

She said that this "always hits the same people, always, everywhere. Why is it always the same who suffer [including disabled people, single parents and minority ethnic groups]?

"If it is for the public good, it should be different sectors of the population who suffer at different times... but if it is the same who suffer every time, then something doesn't seem to be going right in this argument."

She had earlier heard Dr Phillip Lee, a junior justice minister whose responsibilities include human rights, appear to suggest ( see separate story) that the world was facing too many problems, such as mass migration and an ageing and growing population, for the government to be able to do more to protect economic, social and cultural rights.

Bras-Gomes told DNS that the UK was the fifth richest country in the world, and added: "The question I would like to ask the minister... is I acknowledge the difficulties, I acknowledge what you have done, but what I want to ask back from you is whether you are convinced you are doing all you possibly can to use the resources you have.

"[Are you] using all the resources you have to deal with these issues or do your priorities lie elsewhere?

"Most developed countries are not doing it, including the UK."

The EHRC report concludes that the "overall picture" with the UK's implementation of ICESCR "remains deeply concerning", with "persistent challenges in relation to a number of economic and social rights and, in some instances, further deterioration".

UNCESCR found numerous areas of significant concern when it last assessed the UK's progress in 2016, but the EHRC report points out that the UK government has yet to explain the measures it will take to address the committee's recommendations.

So far, the report says, the government has "failed to show why its tax, policy and legal reforms since 2010 were necessary and fair, and how they align with human rights standards".

And it warns that reforms to the social security system since 2010 "may present the most significant threat to the implementation of socio-economic rights" in Britain.

The report adds: "Social security reforms made by successive UK Governments since 2010 have had a particularly disproportionate, cumulative impact on disabled people, resulting in a regression of their rights to independent living and to an adequate standard of living and social protection."

Next week, EHRC is to publish the final report by two academics on their assessment of the cumulative impact of all the government's tax, social security and minimum wage reforms since 2010, including on disabled people.

An interim report published last November showed that families with both a disabled adult and a disabled child would face an annual loss of £5,500 by 2021-22.

Ministers have repeatedly ridiculed the idea of carrying out such a cumulative impact assessment (CIA), ever since disabled campaigners began calling for such research about seven years ago.

This week's report calls again on the UK government to carry out its own CIA, and to examine the factors behind the higher levels of poverty among groups such as children, disabled people, refugees and asylum-seekers, and develop a strategy to address them.

In 2016, UNCESCR called for a CIA of post-2010 policies and programmes on the economic, social and cultural rights of groups including disabled people, women and children.

Bras-Gomes said yesterday: "Surely the UK doesn't lack the human expertise or the resources to do a CIA."

Among the report's other recommendations, it says the government should monitor the effects of its four-year benefits freeze.

And it calls on the government to implement the public sector socio-economic duty under the Equality Act 2010, which has never been brought into force and would impose a duty on certain public bodies to have "due regard" to reducing socio-economic disadvantage when making major decisions.

The report says the UK government should also assess how well its employment support programmes help disabled people find and stay in work, and commit to producing regular reports on its progress in reaching its manifesto target of seeing one million more disabled people in work by 2017.

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'Huge danger' of UK austerity policies damaging rights, says UN expert

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There is a "huge danger" that the government's austerity policies are damaging the well-established social and economic rights of disabled people and other groups, according to the chair of a UN human rights committee.

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‘Huge danger’ of UK austerity policies damaging rights, says UN expert

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disabled people and economic growth: 22 feb 2018

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Disabled People and Economic Growth: 22 Feb 2018: House of Commons debates - TheyWorkForYou

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TheyWorkForYou is a website which makes it easy to keep track of your local MP's activities.

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Scottish human rights organisations launch project to embed a human rights analysis into public bodies' budgeting
THE SCOTTISH HUMAN Rights Commission (SHRC) and Health and Social Care Alliance Scotland (the Alliance) are launching a new project which will work with public sector budget holders - including local authorities, health boards, police, and community planning partnerships - to ensure budget decisions will have a positive impact on people's human rights.
Funded by the European Union and supported by the New York Centre for Economic and Social Rights (CESR), the organisations will deliver a series of workshops on economic and social rights, build capacity to carry out a human rights analysis of the Scottish Government budget, and develop a set of indicators to measure Scotland's performance in meeting its human rights obligations.

The project will be launched on Wednesday with a master class featuring a range of international experts, hosted by the Scottish Parliament's equalities and human rights committee convener Christina McKelvie MSP.

"We hope that a Scotland wide 'national direction' on human rights budgeting will follow." Christina McKelvie MSP

Speaking ahead of the launch, McKelvie told CommonSpace: "We want to keep Scotland leading in the field of human rights-based budgeting.

"That's why I'm thrilled to be able to help launch the SHRC's project to help local authorities with human rights based budgeting.

"We hope that a Scotland wide 'national direction' on human rights budgeting will follow, ensuring everyone, particularly protected groups, are helped and not hurt by the public pound."

The equalities and human rights committee has called on the Scottish Government to develop a national framework for human rights based budgeting to ensure that "protected groups are not unfairly impacted upon" by budget decisions.

Chair of the Scottish Human Rights Commission Judith Robertson said: "We welcome the Scottish Parliament's equalities and human rights committee's call for the Scottish Government to implement a national framework for human rights based budgeting.

"This is something we have long advocated for and we are delighted that we have been awarded funding from the European Union's NHRI.EU [National Human Rights Institutions] fund to help make this a reality."

"There is still some way to go before people can fully enjoy rights like the right to health and equal participation." Ian Welsh, the Alliance

Robertson said there was "significant political will" in Scotland to progress human rights, and that the organisation had also had positive engagement from some public authorities towards achieving this goal.

She added: "We look forward to working on this project, with the Alliance and CESR, to develop practical ways to help public authorities understand how best to protect the rights of every person in Scotland through their budget setting."

The project will seek to embed within budgeting decisions an understanding of the right to social security, the right to food, the right to the highest attainable standard of health, and the right to housing.

Ian Welsh, Chief Executive of the Alliance said: "There is still some way to go before people can fully enjoy rights like the right to health and equal participation in decision-making.

"We are particularly focused on how human rights apply to health and social care and the many people, including people who are disabled, living with long term conditions and unpaid carers, for whom human rights remain unrealised.

"Human rights budgeting would help realise these rights and we believe this initiative will help to further stimulate discussion and add to the growing body of work in this area."

Picture courtesy of Engender

Look at how important CommonSpace has become, and how vital it is for the future #SupportAReporter

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Project putting human rights at the heart of public sector budgets launched

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Scottish human rights organisations launch project to embed a human rights analysis into public bodies' budgeting THE SCOTTISH HUMAN Rights Commission (SHRC) and Health and Social Care Alliance Scotland (the Alliance) are launching a new project which will work with public sector budget holders - including local authorities, health boards, police, and community planning partnerships - to ensure budget decisions will have a positive impact on people's human rights.

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By Maura Lynch, Depute chief executive, Scottish Commission for Learning Disability

RECENTLY, Philip Hammond, the Chancellor of the Exchequer, suggested, controversially, at the Treasury Select Committee that disabled people were in part responsible for the UK's lagging productivity. His remarks, all too briefly, shone a light on a significant problem for people with learning disabilities. They don't get to work.

Research commissioned by the Scottish Commission for Learning Disability (SCLD) estimates that the rate of employment for people with learning disabilities may be as low as seven per cent, well below the disability rate of 43 per cent and the overall rate of 80 per cent.

This is not acceptable. It makes no sense when evidence shows that providing the right support into employment can be a win-win for them and employers. Project SEARCH, an initiative exported from Cincinnati Children's Hospital, supports people with a learning disability into long-term employment by providing them with hands-on experience of working life, together with classroom sessions geared towards reinforcing learning.

When making his remarks, Mr Hammond said increasing the levels of disabled people in the workforce was "something we should be extremely proud of".

Although his comments were probably based on good intentions, such language risks reinforcing a wider narrative that employing disabled people is a virtuous thing for employers to do, in a sort of philanthropic way, rather than good business sense. Our research highlighted that low expectations and negative attitudes are major barriers for people with learning disabilities seeking employment. Aspirations among parents and teachers are often poor and mean people with learning disabilities face obstacles in early life they are unable to clear later. The SCLD Employment Task Group brings together organisations focussed on improving these employment prospects: a positive example of research being used to make a difference.

Real, sustainable employment is achievable for people with learning disabilities. It is not their fault, or always that of employers, that barriers are put in the way. Politicians and policymakers should be as ambitious for people with disabilities as they are for all citizens. We all need to avoid language that can limit ambitions and reinforce out-of-date stereotypes about what people with learning disabilities are capable of.

The Scottish Government is due to host a major congress on disability, employment and the workplace soon. This will consider the development of the Fairer Scotland for Disabled People delivery plan, including seeking to reduce by at least half the employment gap for disabled people, opportunities to promote initiatives such as Project SEARCH and the provision of supported employment contracts through new Fair Start employment contracts across the country. At SCLD we facilitate the Scottish Government's expert group of people with learning disabilities. At its last meeting a member said: "Working is not just about me getting money, it is about putting something back in and paying my taxes." It was a timely reminder that reciprocity sits at the heart of decent, sustainable employment. Many people with learning disabilities do not want a job only because of what it gives them, although it can be life-changing, but what it allows them to give back. As we think about what we can do to enable people with disabilities into work, we should be positive about what they can do for themselves, and for wider productivity and wellbeing.

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Agenda: Working hard for those who also want to contribute

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By Maura Lynch, Depute chief executive, Scottish Commission for Learning Disability RECENTLY, Philip Hammond, the Chancellor of the Exchequer, suggested, controversially, at the Treasury Select Committee that disabled people were in part responsible for the UK's lagging productivity. His remarks, all too briefly, shone a light on a significant problem for people with learning disabilities.

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The Life And Death Of Richard Handley #OpenJustice

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The Life And Death Of Richard Handley #OpenJustice

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Another key player in Richard’s life and death, are Suffolk County Council who commissioned, and paid for his care. To me the evidence is crystal clear, Richard was collateral damage of a policy drive move to Supported Living from residential care. The drivers for this policy change locally seem to have been cost cutting hidden behind an ideology of independence and autonomy. To be fair, Suffolk CC have admitted their failings, their only witness Mr Peter Devlin, came across as genuine and regretful [a comment that should tell you something about some of the other witnesses given this was noteworthy]. The council failed to manage or monitor the change to supported living, various witnesses have suggested that support around Richard ‘fell away’, as commissioner it was the council’s ultimate responsibility to ensure that didn’t happen. They failed.
For some reason best known to United Response and United Response alone [my best guess is money saving] Clara was made redundant. What followed was a dissolving of the care, structure and process in place to keep Richard safe, an erosion of the knowledge that was held about Richard. The care home manager that followed Clara gave evidence about how they didn’t have a problem with Richard’s bowels, completely failing to see the very direct link between the non-care and attention they paid and the ultimate devastating consequences.

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I've spent the last fortnight in Ipswich, live tweeting the inquest of Richard Handley, a young man whose life was cut short in it's prime, aged just 33. I've spent break times with Richard's family in the court jury room, listening to the telling of tales and the sort of family folklore that we'd all recognise from our own lives. The 'do you remember when' and the 'what would Richard say to that', the laughter and the pain, the reminiscence and the desperation. I've repeatedly asked the question 'how could they' or 'but why didn't they', silently more than aloud as I'm mindful of not laying yet more questions and irritations on a family who have fought so hard to get to this stage. The questions in my brain are on loop though, a permanent feature.

I've listened to every single minute of every single witness who has addressed the court. I've watched the counsel circling, stalking and pounce. I've mused the line between inquisitorial and adversarial. I've been deeply reassured by the humanity and fairness of the coroner, Dr Peter Dean.

As I see it, there were several key players in the life and death of Richard Handley. First up were a truly loving, devoted and desperately ordinary family. Just like yours or mine, extraordinary in their ordinariness.

Coroner reads: despite his parents separation they both held parental responsibility and were very much involved in discussions and plans around the service users care

Coroner adds 'and that has come across very strongly'

- Richard Handley Inquest (@HandleyInquest) January 31, 2018

Richard's family clearly loved him, cared for him and advocated to ensure his dietary and health needs were understood and addressed. If you looked at Richard on paper he ticked all the boxes, he was pleasant and amenable, a cheeky chappy with a wicked sense of humour [not that this should matter to the level of care provided to him of course, but it is context], he had strong health advocates in his family members. Richard was on his GP learning disability register, he had some annual health checks, he had a hospital passport. Mention an initiative to ensure learning disabled people can successfully access healthcare and Richard was engaged with it. And yet still he died.

Coroner: I'd suggest the journey is as important as the conclusion we reach at the end of it, in an inquisitorial hearing the fact finding aspect is as important... people have argued whether there needs to be a conclusion at the end of an inquest or not at the end

- Richard Handley Inquest (@HandleyInquest) February 2, 2018

At the end of last week the coroner suggested that the process of an inquest, was as important, if not arguably more important than the conclusion he reaches at the end.

This weekend I read a great Guardian Long Read, The Cult of Mary Beard. I'm a long time fan of Mary Beard, I admire her relentless commitment to discussion on twitter, I found myself nodding along to this article. As someone who has invested countless hours on social media over recent years debating and discussing the premature deaths of learning disabled people, it felt almost grounding to remember that it's okay to do so:

Beard's intellectual style, which suffuses all her scholarship - a commitment to rigorous scepticism that refuses to be cynical - has made her a model for those who worry that the shouting and bullying of the digital world make reasoned political debate impossible... Embedded in her refusal to be silenced, in her endless online engagement, is a kind of optimism: the idealistic, perhaps totally unrealistic, notion that if only we listened to each other, if only we argued more cogently, more tolerantly and with better grace, then we could make public discourse something better than it is.

Colleagues of Beards discuss her style, the emphasis on the process, the dialogue, the discussion and not 'the thing' itself. I couldn't help but draw parallels to the coroner's reminder about the inquest process, the value in hearing and interrogating the evidence put before him and the court.

So who are the other players in the life and death of Richard Handley. There's his GP surgery that had provided primary care to him throughout his life, Bridge Road GP Surgery in Lowestoft. Associated with them, but an independent interested party is Dr Romana Tajammal, a third year GP trainee who did a home visit to Richard days before he died and prescribed laxatives. Alongside the primary care providers are a psychiatrist Dr Salman Ahmad [currently living in New Zealand and who will hopefully be providing written evidence to the court this week] and staff at Norfolk and Suffolk NHS Foundation Trust. NSFT also employed Mr Patrick Murphy, a learning disability nurse who worked at the ATU to which Richard was admitted days before he died. Well strictly speaking he wasn't admitted due to the actions of Patrick Murphy and Dr Rhana Theruvath-Chalil the SHO, who recognised the seriousness of the situation and took him straight to the emergency department at Ipswich Hospital.

Ipswich Hospital are another one of the seven interested parties. It seems that the immediate care was of an acceptable standard, possibly even good, however a failure to recognise Richard's deterioration, to respond to the MEWS scores [which as an aside they failed to provide to the people commissioned to conduct the Serious Case Review] or to escalate to the intensive care team/for senior review meant that Richard died. Something that we heard, on the balance of probabilities, should not have happened.

Another key player in Richard's life and death, are Suffolk County Council who commissioned, and paid for his care. To me the evidence is crystal clear, Richard was collateral damage of a policy drive move to Supported Living from residential care. The drivers for this policy change locally seem to have been cost cutting hidden behind an ideology of independence and autonomy. To be fair, Suffolk CC have admitted their failings, their only witness Mr Peter Devlin, came across as genuine and regretful [a comment that should tell you something about some of the other witnesses given this was noteworthy]. The council failed to manage or monitor the change to supported living, various witnesses have suggested that support around Richard 'fell away', as commissioner it was the council's ultimate responsibility to ensure that didn't happen. They failed.

So finally, to United Response, Richard's 'care provider'. The fact finding journey in relation to the care Richard received, is heart breaking. For many years he received excellent care at Bonds Meadow, as ever that seems to have been down to some brilliant staff, such as Clara Paolantonio-Hoad:

Clara was exceptional. She clearly knew Richard well and cared about him, and the other @UnitedResponse residents. She was proactive, she devised forms, she was visible and expert.

- GeorgeJulian (@GeorgeJulian) January 30, 2018

For some reason best known to United Response and United Response alone [my best guess is money saving] Clara was made redundant. What followed was a dissolving of the care, structure and process in place to keep Richard safe, an erosion of the knowledge that was held about Richard. The care home manager that followed Clara gave evidence about how they didn't have a problem with Richard's bowels, completely failing to see the very direct link between the non-care and attention they paid and the ultimate devastating consequences.

In many ways it reminded me of Dr Valerie Murphy's continual refrain at LB's inquest that Connor wasn't having seizures, despite an inquest being held after he drowned in a bath following a seizure.

Coroner question: you've said a number of times that LB didn't have seizures on STATT you weren't inc 4 July were you?

VM: No, you're right

- LB's inquest (@LBInquest) October 12, 2015

There's none so blind as those who will not see.

Counsel for United Response did his best to exonerate them. He did of course have to get into evidence that United Response are a charity. For the record that doesn't lessen your responsibility. In fact much like Mencap, who still claim to be the leading voice of learning disability, if you're claiming charitable status, inferring that somehow being a charity should paint you as a good egg, it's time to take a long hard look at yourselves. Are you really leading the way? Is your provision exceptional? Do you live by your values or are they just plastered over every surface in your corporate headquarters? Are you quietly working to improve the life experiences of learning disabled people, rather than constantly being seen to be good at something? The fact hasn't escaped me that the CEO of United Response when Richard died was one of the invitees to Bubb's breakfast backslap. Yet another wasted opportunity, built on ego and bluster. Not one of those in attendance thought it inappropriate that there were no learning disabled people at breakfast, speaks for itself really.

So, counsel moved us to the future. Of course it's important to understand how much work United Response have done since Richard's death. The thread below [if you click on it a new window will open with the entire thread] details some of the discussion, AI is Ashley Irons from Capsticks, counsel for United Response and MC is Mike Crowhurst one of the Directors of United Response:

AI: What would be different if Richard came to a @unitedresponse service now

MC: If it was a health matter the commissioner would specify more in their individual plan

AI: in relation to bowels and health matters now, wld staff be better informed?

- Richard Handley Inquest (@HandleyInquest) February 1, 2018

Here we are, at Richard's inquest, over five years since he died and it's a golden opportunity for United Response to hold their hands up, show humility and grace, apologise and reassure us all about the learning that now runs through the core of their organisation.

What did we get? Slopey shouldered defensiveness and a woeful level of knowledge, that's what I got from what I heard at least. First of all Mike talked about paperwork [without acknowledging that there was a lot of good paperwork in place when Richard moved to Bonds Meadow], then he lightly scattered something about mental capacity into the conversation, before attempting to shift blame to Suffolk County Council. He claimed that 'with us, they had been on a journey' do any of these people actually think about the family members sat listening to this?

According to Crowhurst the council are now better at monitoring, so care would be better. To my mind this argument is weak, woefully weak. It's like whenever people get irate and angry that CQC haven't managed to ensure care is good/safe/dignified or what have you, the logic parts of my brain start alarming, CQC are like the fire brigade, we don't blame them if they don't get to a fire soon enough to save someone. We tend to focus more on the cause of the fire. When it comes to care it seems acceptable to blame the regulator, or the commissioner, for not monitoring, rather than the care providers for not providing safe care. Don't get me wrong, as the people paying for care Suffolk CC failed Richard too, but that doesn't absolve United Response of their duty to provide safe care.

What then followed was farcically embarrassing. Irons attempted to lay the ground for Crowhurst to give us all a mini lecture on values based provision, government policy and the development of person centred care over the past decade or so. What actually happened was Crowhurst had to keep referring to his ipad to remember what policy documents he was referring to, he missed the key points of all of them, and he said nothing useful whatsoever. The reliance of words like 'plethora' and 'emanates', alongside a fairly aggressive and defensive manner, just gave a disjointed presentation, a person trying to be clever, but really not giving that impression at all. Whenever this happens another bit of my brain wants to explode, we're talking about a care provider that works with learning disabled people, think about them, channel them, use simple words and just say it as it is. Here's a starter for ten:

We're sorry, we failed Richard. We made mistakes. We didn't support or train our staff properly. We wanted to keep the contract when the move to Supported Living happened, and we falsely assured people and their families that care would not change. This wasn't the case, with devastating consequences for Richard. Policy moves in the learning disability world have focused on giving people more choice and control, what we failed to do was consider this in light of Richard's needs or abilities. We're really sorry and we'd like to work with you to make sure that this doesn't happen to other people we support.

To return to the coroner, and Mary Beard, if the value of an inquest is in the process, the exploration of fact and perspective, then it's been a useful fortnight. Richard's family, more than any of the rest of us, has have to adopt an open mindset, listen and consider perspectives shared that sadly didn't have Richard at their heart. The evidence the court heard is available for us to explore on the twitter feed @HandleyInquest. An inquest is not about blame, however the coroner does get to draw his conclusions.

In legal submissions at the end of last week, the notion of neglect was raised. Dominic Ruck-Keene's on behalf of Richard's family laid out why they considered that the coroner should be mentioning neglect in his narrative verdict. I urge you to click on the tweet to open the thread to read DRK's argument in full (or as close to full as I could type). The impact of failings felt by Richard was cumulative, so it is not appropriate to just argue that individual component parts did not amount to neglect, something that each agency did, in front of Richard's family:

DRK: There was no reason why that chronic condition should have become acute to requite hospital admission, so when you look at how did Richard come to be in that state

- Richard Handley Inquest (@HandleyInquest) February 2, 2018

In response, various counsel suggested the coroner could not find neglect. Beatrice Collier for Suffolk CC made the argument that the coroner could not attribute Richard's death to neglect because it would need to be due to a systems failing and neglect could only be used if it could be pinned to one agency. At least that was my interpretation of what was suggested, again if you click on the tweet you can read the whole thread:

BC: the problem with a systems failure is its very difficult to suggest there is a sufficient level of fault when what is being criticised is a failure to coordinate if you like, my point is in order to find that level of fault you need to attach it to a particular agency

- Richard Handley Inquest (@HandleyInquest) February 2, 2018

Every ounce of my soul felt for Richard's family, sat in court as legal teams attempted to shrug off their responsibilities. Sheila, Richard's mum, tweeted what all of us were asking ourselves:

Legal reps are making submissions that there was no "neglect" by any of their peeps. I wonder how they think Richard ended up with massive faecal impaction from which he died?

- Pingu G S Handley (@PinguG) February 2, 2018

Dominic Ruck-Keene's response was one that makes perfect sense to those of us all too familiar with these systems failings, click on the tweet to open the whole thread:

DRK: It may be hard to characterise any individual agencies actions as amounting to gross failure, but when someone such as Richard is relying on the whole system, the aggregate to provide him with basic medical care

- Richard Handley Inquest (@HandleyInquest) February 2, 2018

I'm not sure what conclusions Dr Peter Dean will draw. I hope he will be brave and courageous and draw a conclusion that will undoubtedly be unpopular for many parties present, but to my simple non-legal brain, is the only possible one that can be drawn. I am certain that anyone who explores the evidence presented to the court can't fail to understand how systems neglect contributed to the life and death of Richard Handley. The interested parties might be able to throw responsibility between them, but Richard and his family need to live the rest of their lives with the consequences.

Returning to the Mary Beard article, Richard's family have engaged optimistically, they have worked hard to ensure the circumstances of his death are explored, that opportunities for learning are identified and that others are safer as a result. They have sat in the Ipswich Coroner's Court and listened to each interested party, they have argued cogently, tolerantly and with better grace than any other entity. They have contributed their part to the public discourse, it now sits with the rest of us to ensure that Richard did not die in vain.

ps If you're working for a comms team in one of the interested parties reading this, or the live tweets, please consider making a donation to our crowdfunding to ensure future families get a similar level of exposure to their loved one's inquest.... it will help us all learn more and work together to improve things

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georgejulian.co.uk - The life and death of Richard Handley #OpenJustice

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I've spent the last fortnight in Ipswich, live tweeting the inquest of Richard Handley, a young man whose life was cut short in it's prime, aged just 33. I've spent break times with Richard's family in the court jury room, listening to the telling of tales and the sort of family folklore that we'd all recognise from our own lives.

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Andrew Strong reflects on a new model for mental health support that could help break down power imbalances between service users and staff.

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Andrew Strong reflects on a new model for mental health support that could help break down power imbalances between service users and staff.

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Critics of the mental health system in Scotland suggest that it places too much emphasis on dealing with the short term diagnosis and treatment of a crisis, rather than placing the emphasis on long term, more sustainable approaches.

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Health and Social Care Alliance Scotland

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For a word which is used so often, power is incredibly difficult to define.

But as NHS Health Scotland point out in their excellent briefing note on power and health and social care, "power exists in the relationships between people and groups of people, sometimes organised and sometimes not."

One of our most common experiences of power is the relationship we all have with the experienced and knowledgeable professionals working in our health and social care system. For many this relationship can be tricky. One of the most common concerns expressed on Care Opinion is the feeling of being a number and not a person and that "the system" has disempowered people and left the expertise and experience they have of their own lives, feelings and conditions at the door.

Critics of the mental health system in Scotland suggest that it places too much emphasis on dealing with the short term diagnosis and treatment of a crisis, rather than placing the emphasis on long term, more sustainable approaches.

The Open Dialogue approach, the subject of the Health and Social Care Academy's latest research report, is a model of support designed for people experiencing psychosis pioneered in Finland, seeks to change this dynamic, with impressive results. It is not a radical alternative - but more a shift in approach away from traditional psychiatry - placing the emphasis on discussion about the best way forward that includes people with mental health problems, families, friends, and professionals in designing solutions.

Key elements include immediate support within 24 hours of first contact, no set agenda for network discussions and crucially professionals are expected to share their feelings directly with the whole network, alongside those of family, friends and neighbours. Often this can include disagreements between professionals about the best way forward - but openness and honest creates a situation where everyone is equal in the decisions that follow.

These principles have the potential to fundamentally rebalance the power dynamic in a way that could be beneficial across all types of services. But it requires policy makers and practitioners to make difficult decisions for it to happen. After all, it could be a threat to existing professional roles, assessment and treatment models and loss of professional control.

This type of approach requires a level of bravery - and doesn't come without risks. But we need transformative answers to difficult questions - and the best ones always rely on putting the expertise of people at the centre of the approach. In England, many NHS Trusts are setting up pilots with agreement to evaluate and deepen the evidence base.

In my view, it's not the approach that matters, but breaking down the power imbalance that will make the biggest difference. In Scotland it's time to reflect on whether we want to be part of creating a different path for the services of the future.

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The power of Open Dialogue is hard to ignore - Health and Social Care Alliance Scotland

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For a word which is used so often, power is incredibly difficult to define. But as NHS Health Scotland point out in their excellent briefing note on power and health and social care, "power exists in the relationships between people and groups of people, sometimes organised and sometimes not."

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NEW EVIDENCE, GUIDANCE AND RESEARCH COMING UP IN 2018

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NEW EVIDENCE, GUIDANCE AND RESEARCH COMING UP IN 2018

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In 2017, we published new evidence looking at housing, music and singing, community wellbeing, inequalities, dance and sport, adult learning, unemployment, job quality, learning at work and retirement. We’ve also managed to release our Wellbeing Indicators for local authorities, along with datasets for all authorities in the UK, and our Measuring Wellbeing Discussion Paper series.

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It's just the beginning of 2018, but we're already publicising our new one-day workshop on wellbeing cost effectiveness analysis on 29 January; releasing the digital version of our incredibly popular wellbeing impacts and policy course we ran with LSE in October; and sharing a new case study looking at a charity evaluating wellbeing. Next week we'll be publishing our evidence review of how visual arts impacts the wellbeing of adults with mental health issues, and later in January, we launch our How to Measure Wellbeing Guide for charities and social enterprises. You can sign up to receive an alert when new evidence or guidance is published.

In 2017, we published new evidence looking at housing, music and singing, community wellbeing, inequalities, dance and sport, adult learning, unemployment, j ob quality, learning at work and retirement. We've also managed to release our Wellbeing Indicators for local authorities, along with datasets for all authorities in the UK, and our Measuring Wellbeing Discussion Paper series.

The Centre is a collaboration and the progress we're making is with the incredible and ambitious work carried out by our and our expert advisory panel, cross-sector research teams in 16 universities across the country led by Universities of Liverpool, Brunel London, East Anglia and the London School of Economics. board, our partners

One of the best ways you can continue to support the Centre is to share with your networks - this has been one of the biggest successes of 2017, so thank you!

More things to look out for in 2018

After a year of building connections and publishing evidence, making sure it gets shared and used, we're looking ahead to 2018 to keep the momentum going in disseminating our current evidence and resources, and laying the groundwork for the next phase of our evidence programmes. If your organisation would like to be involved in the Centre's work, please let us know, by getting in touch at info@whatworkswellbeing.org.

An exciting conference bringing together all our findings on 13 September

A workplace wellbeing index for businesses

New evidence reviews on:

Housing for vulnerable people

How improvements in community infrastructure (places and spaces) can boost social relations and wellbeing in communities

Joint decision-making

Barriers to learning and school leavers and wellbeing

Adult learning and unemployment

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New evidence, guidance and research coming up in 2018

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It's just the beginning of 2018, but we're already publicising our new one-day workshop on wellbeing cost effectiveness analysis on 29 January; releasing the digital version of our incredibly popular wellbeing impacts and policy course we ran with LSE in October; and sharing a new case study looking at a charity evaluating wellbeing.

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Financialisation, as Andrew Sayer notes in Why We Can’t Afford the Rich, has had a similar impact. “Like rent,” he argues, “interest is ... unearned income that accrues without any effort”. As the poor become poorer and the rich become richer, the rich acquire increasing control over another crucial asset: money. Interest payments, overwhelmingly, are a transfer of money from the poor to the rich. As property prices and the withdrawal of state funding load people with debt (think of the switch from student grants to student loans), the banks and their executives clean up.

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Imagine if the people of the Soviet Union had never heard of communism. The ideology that dominates our lives has, for most of us, no name. Mention it in conversation and you'll be rewarded with a shrug. Even if your listeners have heard the term before, they will struggle to define it. Neoliberalism: do you know what it is?

Its anonymity is both a symptom and cause of its power. It has played a major role in a remarkable variety of crises: the financial meltdown of 2007‑8, the offshoring of wealth and power, of which the Panama Papers offer us merely a glimpse, the slow collapse of public health and education, resurgent child poverty, the epidemic of loneliness, the collapse of ecosystems, the rise of Donald Trump. But we respond to these crises as if they emerge in isolation, apparently unaware that they have all been either catalysed or exacerbated by the same coherent philosophy; a philosophy that has - or had - a name. What greater power can there be than to operate namelessly?

Inequality is recast as virtuous. The market ensures that everyone gets what they deserve.

So pervasive has neoliberalism become that we seldom even recognise it as an ideology. We appear to accept the proposition that this utopian, millenarian faith describes a neutral force; a kind of biological law, like Darwin's theory of evolution. But the philosophy arose as a conscious attempt to reshape human life and shift the locus of power.

Neoliberalism sees competition as the defining characteristic of human relations. It redefines citizens as consumers, whose democratic choices are best exercised by buying and selling, a process that rewards merit and punishes inefficiency. It maintains that "the market" delivers benefits that could never be achieved by planning.

Attempts to limit competition are treated as inimical to liberty. Tax and regulation should be minimised, public services should be privatised. The organisation of labour and collective bargaining by trade unions are portrayed as market distortions that impede the formation of a natural hierarchy of winners and losers. Inequality is recast as virtuous: a reward for utility and a generator of wealth, which trickles down to enrich everyone. Efforts to create a more equal society are both counterproductive and morally corrosive. The market ensures that everyone gets what they deserve.

We internalise and reproduce its creeds. The rich persuade themselves that they acquired their wealth through merit, ignoring the advantages - such as education, inheritance and class - that may have helped to secure it. The poor begin to blame themselves for their failures, even when they can do little to change their circumstances.

Never mind structural unemployment: if you don't have a job it's because you are unenterprising. Never mind the impossible costs of housing: if your credit card is maxed out, you're feckless and improvident. Never mind that your children no longer have a school playing field: if they get fat, it's your fault. In a world governed by competition, those who fall behind become defined and self-defined as losers.

Among the results, as Paul Verhaeghe documents in his book What About Me? are epidemics of self-harm, eating disorders, depression, loneliness, performance anxiety and social phobia. Perhaps it's unsurprising that Britain, in which neoliberal ideology has been most rigorously applied, is the loneliness capital of Europe. We are all neoliberals now.

The term neoliberalism was coined at a meeting in Paris in 1938. Among the delegates were two men who came to define the ideology, Ludwig von Mises and Friedrich Hayek. Both exiles from Austria, they saw social democracy, exemplified by Franklin Roosevelt's New Deal and the gradual development of Britain's welfare state, as manifestations of a collectivism that occupied the same spectrum as nazism and communism.

In The Road to Serfdom, published in 1944, Hayek argued that government planning, by crushing individualism, would lead inexorably to totalitarian control. Like Mises's book Bureaucracy, The Road to Serfdom was widely read. It came to the attention of some very wealthy people, who saw in the philosophy an opportunity to free themselves from regulation and tax. When, in 1947, Hayek founded the first organisation that would spread the doctrine of neoliberalism - the Mont Pelerin Society - it was supported financially by millionaires and their foundations.

With their help, he began to create what Daniel Stedman Jones describes in Masters of the Universe as "a kind of neoliberal international": a transatlantic network of academics, businessmen, journalists and activists. The movement's rich backers funded a series of thinktanks which would refine and promote the ideology. Among them were the American Enterprise Institute, the Heritage Foundation, the Cato Institute, the Institute of Economic Affairs, the Centre for Policy Studies and the Adam Smith Institute. They also financed academic positions and departments, particularly at the universities of Chicago and Virginia.

As it evolved, neoliberalism became more strident. Hayek's view that governments should regulate competition to prevent monopolies from forming gave way - among American apostles such as Milton Friedman - to the belief that monopoly power could be seen as a reward for efficiency.

Something else happened during this transition: the movement lost its name. In 1951, Friedman was happy to describe himself as a neoliberal. But soon after that, the term began to disappear. Stranger still, even as the ideology became crisper and the movement more coherent, the lost name was not replaced by any common alternative.

At first, despite its lavish funding, neoliberalism remained at the margins. The postwar consensus was almost universal: John Maynard Keynes 's economic prescriptions were widely applied, full employment and the relief of poverty were common goals in the US and much of western Europe, top rates of tax were high and governments sought social outcomes without embarrassment, developing new public services and safety nets.

But in the 1970s, when Keynesian policies began to fall apart and economic crises struck on both sides of the Atlantic, neoliberal ideas began to enter the mainstream. As Friedman remarked, "when the time came that you had to change ... there was an alternative ready there to be picked up". With the help of sympathetic journalists and political advisers, elements of neoliberalism, especially its prescriptions for monetary policy, were adopted by Jimmy Carter's administration in the US and Jim Callaghan's government in Britain.

It may seem strange that a doctrine promising choice should have been promoted with the slogan 'there is no alternative'

After Margaret Thatcher and Ronald Reagan took power, the rest of the package soon followed: massive tax cuts for the rich, the crushing of trade unions, deregulation, privatisation, outsourcing and competition in public services. Through the IMF, the World Bank, the Maastricht treaty and the World Trade Organisation, neoliberal policies were imposed - often without democratic consent - on much of the world. Most remarkable was its adoption among parties that once belonged to the left: Labour and the Democrats, for example. As Stedman Jones notes, "it is hard to think of another utopia to have been as fully realised."

It may seem strange that a doctrine promising choice and freedom should have been promoted with the slogan "there is no alternative". But, as Hayek remarked on a visit to Pinochet's Chile - one of the first nations in which the programme was comprehensively applied - "my personal preference leans toward a liberal dictatorship rather than toward a democratic government devoid of liberalism". The freedom that neoliberalism offers, which sounds so beguiling when expressed in general terms, turns out to mean freedom for the pike, not for the minnows.

Freedom from trade unions and collective bargaining means the freedom to suppress wages. Freedom from regulation means the freedom to poison rivers, endanger workers, charge iniquitous rates of interest and design exotic financial instruments. Freedom from tax means freedom from the distribution of wealth that lifts people out of poverty.

Naomi Klein documented that neoliberals advocated the use of crises to impose unpopular policies while people were distracted. Photograph: Anya Chibis/The Guardian

As Naomi Klein documents in The Shock Doctrine, neoliberal theorists advocated the use of crises to impose unpopular policies while people were distracted: for example, in the aftermath of Pinochet's coup, the Iraq war and Hurricane Katrina, which Friedman described as "an opportunity to radically reform the educational system" in New Orleans.

Where neoliberal policies cannot be imposed domestically, they are imposed internationally, through trade treaties incorporating " investor-state dispute settlement": offshore tribunals in which corporations can press for the removal of social and environmental protections. When parliaments have voted to restrict sales of cigarettes, protect water supplies from mining companies, freeze energy bills or prevent pharmaceutical firms from ripping off the state, corporations have sued, often successfully. Democracy is reduced to theatre.

Neoliberalism was not conceived as a self-serving racket, but it rapidly became one

Another paradox of neoliberalism is that universal competition relies upon universal quantification and comparison. The result is that workers, job-seekers and public services of every kind are subject to a pettifogging, stifling regime of assessment and monitoring, designed to identify the winners and punish the losers. The doctrine that Von Mises proposed would free us from the bureaucratic nightmare of central planning has instead created one.

Neoliberalism was not conceived as a self-serving racket, but it rapidly became one. Economic growth has been markedly slower in the neoliberal era (since 1980 in Britain and the US) than it was in the preceding decades; but not for the very rich. Inequality in the distribution of both income and wealth, after 60 years of decline, rose rapidly in this era, due to the smashing of trade unions, tax reductions, rising rents, privatisation and deregulation.

The privatisation or marketisation of public services such as energy, water, trains, health, education, roads and prisons has enabled corporations to set up tollbooths in front of essential assets and charge rent, either to citizens or to government, for their use. Rent is another term for unearned income. When you pay an inflated price for a train ticket, only part of the fare compensates the operators for the money they spend on fuel, wages, rolling stock and other outlays. The rest reflects the fact that they have you over a barrel.

In Mexico, Carlos Slim was granted control of almost all phone services and soon became the world's richest man. Photograph: Henry Romero/Reuters

Those who own and run the UK's privatised or semi-privatised services make stupendous fortunes by investing little and charging much. In Russia and India, oligarchs acquired state assets through firesales. In Mexico, Carlos Slim was granted control of almost all landline and mobile phone services and soon became the world's richest man.

Financialisation, as Andrew Sayer notes in Why We Can't Afford the Rich, has had a similar impact. "Like rent," he argues, "interest is ... unearned income that accrues without any effort". As the poor become poorer and the rich become richer, the rich acquire increasing control over another crucial asset: money. Interest payments, overwhelmingly, are a transfer of money from the poor to the rich. As property prices and the withdrawal of state funding load people with debt (think of the switch from student grants to student loans), the banks and their executives clean up.

Sayer argues that the past four decades have been characterised by a transfer of wealth not only from the poor to the rich, but within the ranks of the wealthy: from those who make their money by producing new goods or services to those who make their money by controlling existing assets and harvesting rent, interest or capital gains. Earned income has been supplanted by unearned income.

Neoliberal policies are everywhere beset by market failures. Not only are the banks too big to fail, but so are the corporations now charged with delivering public services. As Tony Judt pointed out in Ill Fares the Land, Hayek forgot that vital national services cannot be allowed to collapse, which means that competition cannot run its course. Business takes the profits, the state keeps the risk.

The greater the failure, the more extreme the ideology becomes. Governments use neoliberal crises as both excuse and opportunity to cut taxes, privatise remaining public services, rip holes in the social safety net, deregulate corporations and re-regulate citizens. The self-hating state now sinks its teeth into every organ of the public sector.

Perhaps the most dangerous impact of neoliberalism is not the economic crises it has caused, but the political crisis. As the domain of the state is reduced, our ability to change the course of our lives through voting also contracts. Instead, neoliberal theory asserts, people can exercise choice through spending. But some have more to spend than others: in the great consumer or shareholder democracy, votes are not equally distributed. The result is a disempowerment of the poor and middle. As parties of the right and former left adopt similar neoliberal policies, disempowerment turns to disenfranchisement. Large numbers of people have been shed from politics.

Slogans, symbols and sensation ... Donald Trump. Photograph: Aaron Josefczyk/Reuters

Chris Hedges remarks that "fascist movements build their base not from the politically active but the politically inactive, the 'losers' who feel, often correctly, they have no voice or role to play in the political establishment". When political debate no longer speaks to us, people become responsive instead to slogans, symbols and sensation. To the admirers of Trump, for example, facts and arguments appear irrelevant.

Judt explained that when the thick mesh of interactions between people and the state has been reduced to nothing but authority and obedience, the only remaining force that binds us is state power. The totalitarianism Hayek feared is more likely to emerge when governments, having lost the moral authority that arises from the delivery of public services, are reduced to "cajoling, threatening and ultimately coercing people to obey them".

Like communism, neoliberalism is the God that failed. But the zombie doctrine staggers on, and one of the reasons is its anonymity. Or rather, a cluster of anonymities.

The invisible doctrine of the invisible hand is promoted by invisible backers. Slowly, very slowly, we have begun to discover the names of a few of them. We find that the Institute of Economic Affairs, which has argued forcefully in the media against the further regulation of the tobacco industry, has been secretly funded by British American Tobacco since 1963. We discover that Charles and David Koch, two of the richest men in the world, founded the institute that set up the Tea Party movement. We find that Charles Koch, in establishing one of his thinktanks, noted that "in order to avoid undesirable criticism, how the organisation is controlled and directed should not be widely advertised".

The nouveau riche were once disparaged by those who had inherited their money. Today, the relationship has been reversed

The words used by neoliberalism often conceal more than they elucidate. "The market" sounds like a natural system that might bear upon us equally, like gravity or atmospheric pressure. But it is fraught with power relations. What "the market wants" tends to mean what corporations and their bosses want. "Investment", as Sayer notes, means two quite different things. One is the funding of productive and socially useful activities, the other is the purchase of existing assets to milk them for rent, interest, dividends and capital gains. Using the same word for different activities "camouflages the sources of wealth", leading us to confuse wealth extraction with wealth creation.

A century ago, the nouveau riche were disparaged by those who had inherited their money. Entrepreneurs sought social acceptance by passing themselves off as rentiers. Today, the relationship has been reversed: the rentiers and inheritors style themselves entre preneurs. They claim to have earned their unearned income.

These anonymities and confusions mesh with the namelessness and placelessness of modern capitalism: the franchise model which ensures that workers do not know for whom they toil; the companies registered through a network of offshore secrecy regimes so complex that even the police cannot discover the beneficial owners; the tax arrangements that bamboozle governments; the financial products no one understands.

The anonymity of neoliberalism is fiercely guarded. Those who are influenced by Hayek, Mises and Friedman tend to reject the term, maintaining - with some justice - that it is used today only pejoratively. But they offer us no substitute. Some describe themselves as classical liberals or libertarians, but these descriptions are both misleading and curiously self-effacing, as they suggest that there is nothing novel about The Road to Serfdom, Bureaucracy or Friedman's classic work, Capitalism and Freedom.

For all that, there is something admirable about the neoliberal project, at least in its early stages. It was a distinctive, innovative philosophy promoted by a coherent network of thinkers and activists with a clear plan of action. It was patient and persistent. The Road to Serfdom became the path to power.

Neoliberalism's triumph also reflects the failure of the left. When laissez-faire economics led to catastrophe in 1929, Keynes devised a comprehensive economic theory to replace it. When Keynesian demand management hit the buffers in the 70s, there was an alternative ready. But when neoliberalism fell apart in 2008 there was ... nothing. This is why the zombie walks. The left and centre have produced no new general framework of economic thought for 80 years.

Every invocation of Lord Keynes is an admission of failure. To propose Keynesian solutions to the crises of the 21st century is to ignore three obvious problems. It is hard to mobilise people around old ideas; the flaws exposed in the 70s have not gone away; and, most importantly, they have nothing to say about our gravest predicament: the environmental crisis. Keynesianism works by stimulating consumer demand to promote economic growth. Consumer demand and economic growth are the motors of environmental destruction.

What the history of both Keynesianism and neoliberalism show is that it's not enough to oppose a broken system. A coherent alternative has to be proposed. For Labour, the Democrats and the wider left, the central task should be to develop an economic Apollo programme, a conscious attempt to design a new system, tailored to the demands of the 21st century.

George Monbiot's How Did We Get into This Mess? is published this month by Verso. To order a copy for £12.99 (RRP £16.99) ) go to bookshop.theguardian.com or call 0330 333 6846. Free UK p&p over £10, online orders only. Phone orders min p&p of £1.99.

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Neoliberalism - the ideology at the root of all our problems

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Financial meltdown, environmental disaster and even the rise of Donald Trump - neoliberalism has played its part in them all. Why has the left failed to come up with an alternative?

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Human stories will convince the public that social care is worth investing inAlex Fox

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Human stories will convince the public that social care is worth investing inAlex Fox

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Those models already exist. Some, such as Homeshare and Local Area Coordination, need scaling. Others, including Spice’s Time Credits and Community Catalysts’ micro-scale approaches, reach thousands or, like Shared Lives, are national. When people hear about these approaches, with their human stories of small achievements that mean the world, they connect with them. They see the value of ordinary life chances for disabled people or a good last 1000 daysfor older people. A green paper based on those stories could finally persuade the public that social care is worth investing in.

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The government's upcoming green paper on social care gives cynics many reasons for doubting it will amount to anything.

The much-anticipated green paper on social care for older people is set to be published by the summer of 2018 - although, having been promised before last year's general election, the sector had been hoping the paper would appear much sooner.

It was also hoped that the green paper would address needs across the entire adult social care sector. Instead, the paper will be limited to the government's plans for improving care and support for older people and tackling the challenges presented by an ageing population.

There will be a 'parallel work stream on working age disabled adults', but some are concerned this report will focus on getting more disabled people into work.

The government has invited a number of people to advise on the paper, including Paul Burstow, chair of the Social Care Institute for Excellence; Sir Andrew Dilnot, the former chair of the Commission on the Funding of Care and Support; and Caroline Abrahams, charity director of Age UK. However, no user or care worker representatives have been invited to take part in consultations.

The proposals set out in the paper will build on the additional £2bn the government has provided to meet social care needs, reduce pressures on NHS services and stabilise the social care provider market over the next three years. Once published, the paper will be subject to a full public consultation.

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Thank you for your feedback.

First, we have been here before. Many times. Each time, politicians' desire to make things better for older and disabled people has lost out to the opportunity to score cheap points ( Labour's plans branded a "death tax" by Conservatives; Labour condemning the Tories' "dementia tax") or the Treasury's particular aversion to pouring money into a sector it appears to regard, more so than others, as a leaky bucket.

The sector fought for Andrew Dilnot's proposed solutions to funding social care, only to acquiesce to their postponement, hoping to benefit from the money saved. Social care cuts continued unabated and the postponement has become permanent. Some 1.2 million older people lack vital support, according to Age UK, up almost 50% since 2010, and, as eligibility thresholds rise, only those disabled people who have the highest levels of need get help. And then there's the Brexit maelstrom.

Each of those problems is compounded by our failure to create for the public a clear and compelling picture of what social care is and could be. You will find more love in many social care services than in medical ones, but it is the NHS that is loved and social care that is more often feared. So we need this green paper. It is our only opportunity to create a vision worth investing in. That should be its focus and ours; not the "Who pays?" question, which has only ever had a few simple answers. Dilnot's solutions will not be improved upon, however unpalatable their costs.

NHS England successfully galvanised its sprawling sector around new models of care in its Five Year Forward View. Some are complex and incompletely evidenced, but they made enough sense to protect the health service from the worst cuts. Social care can do the same: not with service reconfigurations, but by building a movement around the idea of living well with disability and in older age, showing people that issues such as loneliness or family breakdown from unmanageable caring responsibilities are the "giant evils" of our times, and demanding more caring, social kinds of social care to address them.

Those models already exist. Some, such as Homeshare and Local Area Coordination, need scaling. Others, including Spice's Time Credits and Community Catalysts' micro-scale approaches, reach thousands or, like Shared Lives, are national. When people hear about these approaches, with their human stories of small achievements that mean the world, they connect with them. They see the value of ordinary life chances for disabled people or a good last 1000 days for older people. A green paper based on those stories could finally persuade the public that social care is worth investing in.

Alex Fox is chief executive of Shared Lives Plus and chairs the government's review of the contribution of voluntary, community and social enterprise organisations to health and care

Join the Social Care Network for comment, analysis and job opportunities, direct to your inbox. Follow us on Twitter (@GdnSocialCare) and like us on Facebook. If you have an idea for a blog, read our guidelines and email your pitch to us at socialcare@theguardian.com If you're looking for a social care job or need to recruit staff, visit Guardian Jobs

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Human stories will convince the public that social care is worth investing in | Alex Fox

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The government's upcoming green paper on social care gives cynics many reasons for doubting it will amount to anything. First, we have been here before. Many times.

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Creating child poverty for a whole new generation. Take a bow, Theresa May

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Creating child poverty for a whole new generation. Take a bow, Theresa May

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allow me to explain. From next week Theresa May’s government will extend the cap on household benefits. Poor families in London will not be allowed more than £442 a week. Those outside the capital will be cut to £385 a week. In some areas the cuts will be brought in straightaway; in others with a slight delay. But in the end, families above the limit will be hit twice over. First, they will be pushed further into poverty. And, like Steve, their housing benefit will be docked, so they will be left scrabbling just to make the rent and keep a roof above their heads.

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In a little council house in Birkenhead, Steve is panicking over how he'll find an extra £304 rent money a month. He has just days to magic up an answer. If he can't, he can guess what will happen. "Eviction. Come the end of November, I won't have a roof." As a single parent, Steve won't be the only one slung out. His four boys, aged from three to eight, would also lose their home and probably be taken from their dad. "I'd be fed to the dogs." Everything I've tried so hard for ..." - a snap of his fingers - "Nothing."

It's not a landlord doing this to Steve; it's our government. It's not his rent that's going up; it's his housing benefit that's getting cut. And he's not the only one; on official figures, almost 500 households in the borough of Wirral face a shortfall of up to £500 a month.

From next Monday 88,000 families across Britain will have their housing benefit slashed. They will no longer have the cash to pay their rent. Among all those whose lives will be turned upside down will be a quarter of a million children. That's enough kids to fill 350 primary schools, all facing homelessness.

Those figures come directly from the Department for Work and Pensions. Plenty dispute them, which is unsurprising since DWP officials keep changing their minds. Some experts believe the number of children at risk could total 500,000.

This is the biggest benefit cut that you've never heard of. The newspapers will waste gallons of ink on Candice Bake-Off's lipstick and Cheryl's apparent baby bump. But about a government policy that could disrupt hundreds of thousands of lives, there is near silence.

So allow me to explain. From next week Theresa May's government will extend the cap on household benefits. Poor families in London will not be allowed more than £442 a week. Those outside the capital will be cut to £385 a week. In some areas the cuts will be brought in straightaway; in others with a slight delay. But in the end, families above the limit will be hit twice over. First, they will be pushed further into poverty. And, like Steve, their housing benefit will be docked, so they will be left scrabbling just to make the rent and keep a roof above their heads.

How those families will manage is anyone's guess. When Steve opened the letter at the end of July he had a "panic attack". All that went round his mind was one question: "How the hell am I going to pay this?" Then came what he calls "a depressive state" that lasted nearly two months. Now he bottles it up, for the sake of his boys. "When they're not around, that's when I cry. When they're out at school, when they're asleep: that's when I break down."

It's the fear of losing the boys he fought so hard for custody of that haunts him most. So worried is he about a social worker taking them away that he requests a false name.

Like many of the families that will be hit, Steve's options are very limited. He can borrow from his mum, although she's hard up. He can try to land 16 hours' work a week - and has already been giving out his CV - but not too many employers will be able to fit around his school runs and meal preps. Or he can ask Wirral council to top up his rent, by filling out a complicated form that asks for proof of his weekly spend on everything from cigarettes to toiletries. And that would only cover him for a few months.

He has one jumper and one coat to last him the entire winter. He sometimes gets by on a single bowl of cornflakes a day

Even before next week's cuts, Steve is already bumping along the bottom. He has one jumper and one coat to last him the entire winter. He sometimes gets by on a single bowl of cornflakes a day. Anything spare goes towards the boys. But they don't get fresh fruit or veg, subsisting on frozen meals from Iceland.

The three-year-old comes into the kitchen for a drink, and as Steve opens the fridge, I can see it contains nothing apart from a half-full bottle of milk. The house is empty to the point of desolation: no shades for any of the lightbulbs, none of the usual family photos or decorations.

George Osborne's benefits cap was always a rotten policy that played well in focus groups. But when introduced in 2013, it hit a relatively small number of poor families in high-rent London. And, some on the right would whisper in the ears of biddable journalists, the poor really had no place in the world's biggest property bubble. The cuts that start next week will be a step change. They will hit low-rent areas such as Wirral and Darlington. They will render family homes rented out by housing associations "financially toxic", according to the housing expert Joe Halewood: tenants will no longer be able to afford them, and housing associations can't afford to leave them empty. And they will rip through the budgets of already cash-starved local councils, who will now have to find emergency accommodation and cash funds for displaced families.

To see how deep it will cut, have a look at these figures. I grew up on the outskirts of London, in a place called Edmonton. It has pockets of deprivation as bad as anything in Wirral and, on DWP estimates, around 1,200 households here will be hit by the new benefits cap. By my reckoning, this government now expects children growing up in my former home to be raised on £1.02 a day.

The basic expenses for a family with four children in Edmonton come to £399.14 per week.

My sums go as follows:

£315.12 for rent (the allowable local rent for a three-bed home).

£33.36 for council tax (Enfield council, band E property).

£32 for gas and electric (the average weekly bill, according to government figures, with an extra 20% added for a large family).

£8.54 for water (Thames Water's average bill for 2015, with 20% added for a large family).

£10.12 phone and broadband (BT Anytime standard package).

Taking all that from the £442.31 allowed to any London family leaves £43.17 each week left over for the family. That is £1.02 per person per day.

Of course, these figures are arguable. The family could cut down on energy use by choosing to be cold this winter. Or they could go without showers and washing up. That said, I've left off mobile phone calls and TV. I've not factored in school trips or family breaks or Christmas.

These cuts will do something Thatcher never managed: they break once and for all the link between the needs of benefits claimants and their entitlements. Children will be punished for the "sins" of their parents: the sins of being poor and of having too large a family in the eyes of Osborne and Iain Duncan Smith. David Cameron's Tories once legislated to "eliminate child poverty": Theresa May's Tories are re-creating it for a new generation.

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Creating child poverty for a whole new generation. Take a bow, Theresa May | Aditya Chakrabortty

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In a little council house in Birkenhead, Steve is panicking over how he'll find an extra £304 rent money a month. He has just days to magic up an answer. If he can't, he can guess what will happen. "Eviction. Come the end of November, I won't have a roof."

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Sustainability report: who’s reading the,

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Sustainability report: who’s reading the,

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Was the first true corporate social responsibility (CSR) report written by Shell in 1991 or by Ben & Jerry's in 1989? Is sustainability reporting the same as CSR, environment, social and corporate governance (ESG), or citizenship reporting? And who is actually reading the things?

Non-financial reporting is surprisingly controversial and occasionally mysterious for a phenomenon only about 20 years old. Whatever the true origins of what, for the sake of sanity, I shall call sustainability reporting, the explosion of these vessels of transparency and accountability continues.

The most recent data from the Global Reporting Initiative (GRI) - which oversees a global standard for sustainability reporting - revealed a 50% increase in reporting between 2007 and 2008. That growth is even stronger in developing countries, where the numbers of reports have quadrupled since 2005.

To understand what's going on, GRI commissioned a survey designed to understand the value of these multiplying reports. The 2010 results from this survey, Reporting Change, have just been launched ( download it here). As one of the authors I've peeked into the minds of 5,000 readers of reports and 100 writers of them. The results are fascinating, worrying and exciting in equal measure.

The massive response to the survey from Brazil raised a few eyebrows. I've spoken to several Europeans incredulous that Brazilians would be interested enough to participate. Of course sustainability reports from emerging markets are going to win the numbers game in surveys (bigger populations). But in the year that Brazil's Green candidate Marina Silva won 19% of the presidential vote (the Green party in the UK celebrated landing less than 1% of the popular vote by comparison), perhaps her population's growing interest in CSR shouldn't have come as such a shock.

Wherever the votes came from, there were some things everyone agreed with. Both readers and writers of reports listed their top two reporting objectives as "improving internal processes" and "accounting for sustainability performance". The mantra of reporting should be "keep it strategic stupid", with a clear track of progress over time and believable links between sustainability and business strategy.

No argument there. But when comparing views of readers and writers of reports on communications and engagement some glorious ironies emerged. Over half of the report writers surveyed (57%) chose "engage with stakeholders" as one of their top three reasons for reporting. But just 17% of readers agree the purpose of reports is to meet their expectations. The very people reporters want to engage with don't welcome their advances, at least via reporting. It seems sustainability reporting should simply be an account of performance, not a stakeholder engagement tool.

Reports do matter to readers: 60% of them claim their commitment and connection to an organisation is positively influenced by reading a sustainability report. Basically it comes down to motivation. Readers want reports designed to account for performance, not designed to spin, flatter or boast. Reporting and stakeholder engagement are complementary, but separate activities. Deciding where they intersect is crucially important for trust in reporting.

I would argue that the perfect intersection is within the messy, live, evolving and well-populated world of social media. Reports are stuffed with snippets, key performance indicator's (KPI's), commitments and stories. Sometimes the gold is hard to find within the vast repository of a report, but it's almost always there.

Robust, comparable and comprehensive reports are a treasury of engaging information, but by necessity a little dull. So reporting needs to climb out of the pages of reports, and diffuse the fascinating data across social media, advertising, debates and new technologies. A sustainability report may not be stakeholder engagement in itself, but stakeholder engagement sure can use the content.

Finally, sustainability reporting is busting out of its niche. New technologies mean report data pops up from smartphone barcode scans. New readers in emerging markets are talking about what they read, and choosing employers, investments and purchases based on ESG data. Calls for integrated and compulsory reporting are being seriously debated by governments and industry bodies.

This survey is great news for the innovative and globally-minded. Just like sustainability and CSR itself.
Solitaire Townsend is co-founder of Futerra Sustainability Communications and tweets @greensolitaire This content is brought to you by Guardian Professional. Become a GSB member to get more stories like this direct to your inbox

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Sustainability reports: who is reading the things?

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Was the first true corporate social responsibility (CSR) report written by Shell in 1991 or by Ben & Jerry's in 1989? Is sustainability reporting the same as CSR, environment, social and corporate governance (ESG), or citizenship reporting? And who is actually reading the things?

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IT’S TIME FOR FULL LEGAL EQUALITY: WITHOUT IT, IT WILL NEVER BE FULLY OK TO TALK ABOUT MENTAL HEALTH. Liz Sayce

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IT’S TIME FOR FULL LEGAL EQUALITY: WITHOUT IT, IT WILL NEVER BE FULLY OK TO TALK ABOUT MENTAL HEALTH. Liz Sayce

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In the UK we need a movement for new law that enshrines human rights as a core strategy for full and equal participation in society.

All of this could be developed by service users, family members and organisations  coming together – linking up with movements of people working to change mental capacity law - to press for the UN Convention on the Rights of Persons with Disabilities to be implemented in the UK. Some things would take time – transforming services, devising codes and guidance to shape new approaches in services.

But it would be worth it. A change in the law is a fundamental milestone on the way to full citizenship.

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Author: Liz Sayce, disability rights commentator

In 2017 the United Nations Committee on the Rights of Persons with Disabilities recommended that UK Governments should:
'Repeal legislation and practices that authorise non-consensual involuntary, compulsory treatment and detention of persons with disabilities on the basis of actual or perceived impairment'.

In other words 'mental disorder' or any other impairment should not be one of the criteria for compulsory treatment or detention. This is discriminatory: someone with a 'mental disorder' can be detained because of a potential future risk when someone with no mental disorder (but with, for instance, a history of violence when drinking) with the same future risk cannot be detained. Generally citizens are not detained because of something they might do in the future; and studies show that to prevent one person with a mental health condition from committing, say, a homicide you would need to detain 5000 who would never commit such an act.
'A bolish all forms of substituted decision-making concerning all spheres and areas of life by reviewing and adopting new legislation in line with the Convention to initiate new policies in both mental capacity and mental health laws'.
The UK Government ratified the UN Convention on the Rights of Persons with Disabilities in 2009, with cross-party support.

So we might expect that mental health organisations would welcome the Independent Review of the Mental Health Act, announced by the Prime Minister in October, as a major chance to get rid of our discriminatory laws and achieve full equality and human rights. Instead reaction has been strangely mixed:

A Maudsley Debate on the motion 'This house believes that fundamental reform of the Mental Health Act is required to reduce discrimination and unnecessary detention' was actually defeated in November

Some media and social media commentators see the Review as a potential waste of time, a 'dangerous distraction' from addressing resources as Professor Scott Weich put it, when 'Decades of chronic underfunding have led to a crisis in mental healthcare' as Clare Allen put it.

Mental health organisations, and the Mental Health Alliance that brings them together, are generally in favour of law reform but have not yet been clear whether they question the way the current law permits compulsory treatment and detention on the basis of risk analyses that would not apply to other citizens

Future historians may look back on that Maudsley debate with amazement, as a group of (mainly) mental health professionals voted against achieving law that complies with the UN Convention. As Normal Lamb MP put it: 'How can we support a law that perpetuates discrimination?'

It also may seem strange that commentators were pressing for services rather than legislative reform. The UN Convention says that disabled people (including of course people with 'psycho-social disabilities', ie mental health challenges) have a right to live independently and be included in the community - for instance through 'access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community'. Surely we want both full legal equality AND support to live in the community. Why choose?

Some commentators also seem keen to restore services like day centres that segregate people - rather than question what type of services people most want for the future to enable them to participate fully in society.
Let's talk about mental health - or let's act
Most social movements see full legal equality as one fundamental milestone in their progress: think of the US civil rights movement overturning segregation everywhere from lunch-counters to universities, or the LGB movement in the UK campaigning for an equal age of consent and equal marriage.

Yet in mental health there is no clear, united campaign for law enshrining human rights.

Meanwhile many in the mental health world are working strenuously for cultural change - changing the conversation in mental health, making it easier to speak openly - but without pressing for equality under the law. I want to suggest that cultural change won't happen without legal change - without full equality and human rights.

Who could argue with the aspiration to make it easier for us all to talk about mental health challenges? Breaking down silence must, surely, change culture and improve lives.

But history tells us that where silence is influenced by imbalances of power, cultures don't tend to shift without changes to real, tangible inequalities.People don't break silence in large numbers until it is, and feels, safer to speak. Even when individuals seize their courage in both hands and speak openly, they often maintain some secrecy. Think, for instance, of John Fryer, the psychiatrist who addressed the American Psychiatric Association in 1972 with the words 'I am a homosexual. I am a psychiatrist' - and did so wearing a mask.

He was certainly pioneering - but with homosexuality listed as a mental disorder, and psychiatrists supposed to be the healers not the 'mentally ill', he chose to remain (initially) anonymous. Only after it was de-classified as a 'disorder' (in 1992 in the UK) did gay mental health professionals gradually begin to feel it was safe to be out.

I've been thinking about secrets held by whole groups of people - and what has enabled people to break through the silence. Bear with me for some digressions, which may have some relevance to the current review of the Mental Health Act.

Where large groups of people remain silent about something, one factor driving it often seems to be power - or powerlessness.

Sometimes silence may help preserve power. For instance, historically, members of the Masons may not have wanted to divulge the rituals and signs that underpinnedtheir influence to secure jobs and advantage for their members. Or Governments may want to conceal or downplay evidence that could affect their reputation: on the 70 th anniversary of the partition of India, for instance, it was striking how many British people - including those of Indian/Pakistani descent - said during BBC coverage how little they knew aboutits impact (the biggest migration in human history - around 14 million people, the large numbers of deaths). Some commentators ascribed blame for this to the legacy of the British Empire, which Orwell had noted tended to conceal atrocities, thereby allowing the British to 'think of England as a democratic country'.

But often silence by whole groups of people stems not from the urge to preserve power - but from powerlessness and fear. People are in effect silenced by those with greater power, choosing silence for fear of negative consequences.

In the 1980s, British people diagnosed with HIV often kept it secret - for reasons including fear of being hated or rejected when public debate linked HIV, homosexuality and illegal drug use; and fear of losing jobs and livelihoods. Following some of the most dynamic campaigns in British history, including the slogan 'silence = death', anti-discrimination law was passed (in 1995) and investments made in research and treatments. A major cultural shift influenced and was influenced by the changes in law and policy.

To take a radically different example, in Spain, after the fall of Dictator Franco in 1975, people accepted a transition to democracy on the basis of a 'pact of forgetting' ('pacto del olvido'). They pushed aside memories of a past civil war and its aftermath, the atrocities committed by the regime (thousands executed, many purged from civil service and other jobs for their political views). But those on the Franco side could visit memorials to their families who had died as heroes in the conflict; whereas those opposed to Franco often did not know where their relatives lay buried in unmarked mass graves. In that sense the 'forgetting' was imposed on the 'losing' side. 'I have no idea where my grandfather is buried...Can you imagine? ....The fact that it is left to an Englishman to take guided tours of this place [a mass grave] tells you something. We have just stuck a bandage on top of the wound and forgotten about it. It won't do'.Only in the 2000s did people start searching in earnest for the graves of theirrelatives.
What does this mean for mental health law?
In the Stalin era in the Soviet Union, Figestells the stories of 'the Whisperers' - the people who kept secrets even from their own families, or just whispered to each other for fear of repercussions. For instance, Antonina Golovina was exiled at the age of 8 to a labour camp, branded a 'class enemy', excluded from higher schools and many jobs and always vulnerable to arrest. She did not even tell her husband about her past - until the 1990s when Gorbachov's policies of glasnost were introduced and open criticism of Stalin's repressions were appearing in the media. At that point she discovered that her husband too came from a family of 'enemies of the people' and they were at last able to talk freely to each other.

Some of these examples are extreme and of course the position of people living with mental health issues in the UK is nothing like the experience of people living under Stalin's repressive regime. But what the different examples suggest is that imbalances of power can silence people - in different ways and degrees - and that changes in the balance of power can drive a new openness. In the Soviet Union it was new policies of glasnost that enabled people to break their silence. For people living with HIV, it was changes in health policy and new laws outlawing discrimination.

Changes in law, policy and culture re-inforce each other. Consider the numbers of LGB people who 'came out' following the equalisation of the age of consent, civil partnership and finally equal marriage in the early 21 st Century. Of course, there were people who were 'out' before that - but as the discriminatory laws fell like dominos in the 2000s it simply became safer and safer, more and more accepted, to be open.

People with mental health conditions still fear being open. They are significantly less likely than those with other impairments or health conditions to be open at work. The reasons they give are fear of being judged less competent, being passed over for promotion or being first in line for redundancy. Where they are open, it is more likely to be to a colleague than a line manager or HR (ie anyone with power over their career). Testimony from people with lived experience repeatedly shows that powerlessness and fear contribute to people's decisions not to be open. A Mind survey suggests these fears can be well-founded: one in 5 people who had been open at work were forced out of their jobs; the British Social Attitudes Survey 2016 found a third of the public surveyed thought thatthe medical history of someone with depression or schizophrenia should make a difference to their chances of gaining promotion; and the Equality and Human Rights Commission found people with mental health conditions earned up to 42% less than their non-disabled peers.

For those subject to compulsory detention and treatment, research suggests (unintended) negative effects, for instance: 'The awareness of being deemed to require compulsory detention generates such negative attitudes as self-denigration, fear and unhealthy repression of anger.... Furthermore, the fear and anxiety associated with involuntary admission delays the recovery process'. Some people, especially those from BAME communities who are much more likely to be treated compulsorily than others, lose trust in services because compulsion is experienced as traumatic.

Rather than focus just on changing cultures, or changing conversations, we need to look at the issue of silence through the lens of power.

We have taken some steps towards greater equality. In the 1990s people with lived experience campaigned successfully (alongside other disabled people) for anti-discrimination law, which was gradually expanded and strengthened through the 2000s. In 2009, mental health, cancer, HIV and disability activists came together to campaign successfully to stop a particular type of employment discrimination (in effect by debarring employers from asking about prior experience of health issues before job offer). In 2013 Government passed the Mental Health (Discrimination) Act putting an end to the exclusion of people who have been sectioned from being MPs; and to the bar on people receiving psychiatric treatment from serving on juries or being company directors.
But is it practical?
But we do not have full equality. The Equality Act 2010 needs improvement. The vital requirement on public sector organisations to positively promote equality - not just offer redress after discrimination has occurred - is neutered by the fact that organisations can meet the requirement just through process, with no outcomes achieved. And declining access to justice means the law for many exists only on paper.

There is another fundamental lack of equality: the continued existence of mental health law that says that if you have a 'mental disorder' you can be detained and treated against your will on the basis of assessments of risk that would never apply to other citizens.

Civil rights movementshave always campaigned for full equality before the law - from ending segregation on buses, to votes for women. In mental health, ending the profound inequality of different rules allowing compulsory treatment and detention for one group of citizens is vital to an equal position in society.And greater equality would make it easier to be open.

There are complex and sensitive practical issues to consider. There are times when people face challenges in making decisions. Good practice - as under mental capacity law - is to ensure support to enable the person to take decisions. But sometimes people are (often temporarily) not able to take decisions even with the best possible support. In this instance, someone with a mental health condition should be covered by the same laws and fundamental justice that cover people whose challenges result from different sources (being drunk, having dementia etc). Codes of Practice could be drawn up to address the specific issues relating to mental health. The UN Committee on the Rights of Persons with Disabilities tells us what such laws should look like: essentially, replacing substitute decision-making with supported decision-making and - if decisions have to be taken without the person's direct involvement at that time - rooting decisions in people's own 'will and preferences', not in an expert's view of the person's 'best interests'. This could involve drawing on an advance directive - which a person with recurring difficulties may have written; or piecing together information on the person's will and preferences from all sources possible. This would reflect full equality before the law. George Szmukler, a clinician himself, has explored in depth how law and practice could reflect equality.
Concluding thoughts
Thinking on the future of mental health law and mental capacity law have tended to be done separately. It would be useful for people with expertise in both areas - the expertise of lived experience, of law, of clinical practice - to come together to work on the detail of the legal and practice changes needed.

There are numerous issues for services to consider. Developments that could help are increased investment in user-led services and peer support, including those led by people from BAME communities. We also need to learn from the best evidence on 'no force' approaches - like Merseyside's award-winning 'no force first' initiative, that places relationships within services at the heart of a successful approach to reducing restraint- and move towards services that take a proportionate approach to risk, serving people, not containing them. We need an honest debate about risk that acknowledges that risks are impossible to predict accurately. We need to stop incentivising clinicians to be risk-averse out of fear for their reputation (it's always easier to blame a clinician for the one person who hurts themselves after leaving hospital than for the many compulsorily detained unnecessarily - and it is concerning how many people who start out in hospital on a voluntary basis are sectioned at the point they choose to leave).

We need a genuine shift in the balance of power.

Reviews of mental health law do not come along every day. This is the moment to address a major power imbalance that people living with mental distress experience. We could learn from legislative developments in Northern Ireland and Canada that take us in a better direction than our own mental health law.

Cultural change is not enough on its own. In the 1990s disability discrimination law was brought in against the criticism that all we needed was more 'education'. Disability activists rightly fought for legal rights because the educational approach was failing - and progress did indeed speed up after the new law was introduced, ushering in better employment opportunities and improved accessibility.

Full equality and culture change go hand in hand. They re-inforce each other. That is why we need fundamental change to our mental health law. We need full equality before people will universally believe it is OK to talk about mental health. As long as we are not equal, some people will stay silent due to powerlessness.

Money for services is essential but is not enough on its own. As George Szmukler put it 'Resources are not an excuse for discrimination'We need a major power shift so that people are 'served' with a radical loss of co-ercion. And we also need rights to participate in the community, which means investment in support for community living.

In the UK we need a movement for new law that enshrines human rights as a core strategy for full and equal participation in society.

All of this could be developed by service users, family members and organisations coming together - linking up with movements of people working to change mental capacity law - to press for the UN Convention on the Rights of Persons with Disabilities to be implemented in the UK. Some things would take time - transforming services, devising codes and guidance to shape new approaches in services.

But it would be worth it. A change in the law is a fundamental milestone on the way to full citizenship.

Crawford M (2000) Homicide is impossible to predict. Psychiatric Bulletin 24, P 152

UN Committee on the Rights of Persons with Disabilities (2017) Concluding Comments

Maudsley Debate November 22 2017

https://www.theguardian.com/society/2017/oct/10/more-talk-mental-health-act-theresa-may

Maudsley Debate November 22 2017

Von Tuzelman (2017) Who is to blame for partition? New York Times. https://www.nytimes.com/2017/08/18/opinion/india-pakistan-partition-imperial-britain.html

Orwell G, cited in Haycock (2012) I Am Spain. Old Street Publishing

Tremlett G (2006) Ghosts of Spain: travels through a country's hidden past. Faber and Faber

Coman J (2016) Eighty years on Spain may at last be able to confront the ghosts of civil War. The Guardian 29 May

Figes O (2007)The Whisperers. Private Life in Stalin's Russia. Penguin Allen Lane

Sayce (2010) Doing Seniority Differently. A study of high fliers living with ill-health, injury or disability. Disability Rights UK

https://www.theguardian.com/careers/careers-blog/mental-health-at-work

https://www.equalityhumanrights.com/en/pay-gaps/disability-what-does-pay-gap-look

Pandarakalam J P (2015) Formal psychiatric treatment: advantages and disadvantages. BJMP 8 (4):a837

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House of Lords (2016) The Equality Act 2010: Impact on Disabled People. https://publications.parliament.uk/pa/ld201516/ldselect/ldeqact/117/117.pdf

http://www.merseycare.nhs.uk/about-us/striving-for-perfect-care/no-force-first/

MaudsleyDebat e22 November

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Author: Liz Sayce, disability rights commentator In 2017 the United Nations Committee on the Rights of Persons with Disabilities recommended that UK Governments should: 'Repeal legislation and practices that authorise non-consensual involuntary, compulsory treatment and detention of persons with disabilities on the basis of actual or perceived impairment'.

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 ‘It’s broken her'. Assessments for disability benefitts and mental health

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 ‘It’s broken her'. Assessments for disability benefitts and mental health

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Our three key recommendations

A major reform of the PIP assessment and the WCA
is needed. This should result in both assessments reducing the distress caused to people affected by mental illness and that better re ect the realties of living with a condition of this type. Such reform would reduce the need for appeals and the associated costs to the DWP and HM Courts & Tribunals Service (HMCTS).

The Government should review the way in which people with mental illness are assessed. Where clear medical evidence exists that claimants have severe forms of mental illness, they should be exempt from face-to-face assessments. Where face-to-face assessments are necessary, claimants should be encouraged to seek support from carers, friends or family members.

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Community approach to social work delivers more personalised care

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Community approach to social work delivers more personalised care

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Recently, it considered commissioning weekly visits from a support worker to help Gail manage her home. But instead, under a new approach launched in Leeds last year, Gail met social work staff at community “talking points” – venues such as libraries and churches instead of at home or at the council. The neutral environment sparked different conversations about support. Gail said she wanted to volunteer and staff felt able to be more creative with her care.

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Gail* has a learning difficulty, mobility problems and is prone to angry outbursts. Leeds council adult social care staff have supported her intermittently over a few years, helping with self-care and chaotic living conditions.

Recently, it considered commissioning weekly visits from a support worker to help Gail manage her home. But instead, under a new approach launched in Leeds last year, Gail met social work staff at community "talking points" - venues such as libraries and churches instead of at home or at the council. The neutral environment sparked different conversations about support. Gail said she wanted to volunteer and staff felt able to be more creative with her care.

A social worker supported Gail to explore opportunities at her community centre, where she began volunteering. Her self-esteem has grown, her personal appearance has improved and she has begun anger management classes.

Feedback from people like Gail involved in the new support method includes comments about staff such as "they listened to me" and "we did talk about the important things".

Leeds is one of nine local authorities changing adult social care by developing community-led social work. This involves offering more local solutions to people seeking support. The aim is to respond better to individuals' aspirations instead of fitting them into existing services.

The work is supported by social inclusion charity National Development Team for Inclusion's community-led support (CLS) programme. NDTi has just published an evaluation from the first year of delivery in the participating areas (Denbighshire, Derby, Doncaster, East Renfrewshire, Leeds, Scottish Borders, Shropshire, Somerset and South Ayrshire). Results so far include quicker help for those newly seeking support, more community-based options, less bureaucracy, improved staff morale and budget savings. One area found that for every £1 spent in the first year, there was a return of £2.22, thanks to smaller waiting lists and fewer assessments and referrals for paid support.

"We're trying to redesign adult social care, making it fit for purpose, better for staff and better for people," says Jenny Pitts, who is leading the programme. "We don't have enough resources coming into social care ... it takes so long to do an assessment, and then [there's often] no services at the end of it."

Social work services are increasingly becoming the 'border patrol'. None of us came into social care to do that

The concept of community social work is not new, but demand for social care, pressure on staff and funding cuts mean less time and freedom to develop innovative solutions. The 2014 Care Act encourages community-focused support, but this has been hard to achieve. A difficulty in developing "strengths-based" solutions is well documented, for example, in recent guidance from Think Local Act Personal.

NDTi's programme builds on the successful adult social work practice at Shropshire social enterprise People2People, which Pitts ran. At the NDTi, she and her team work with areas over 18 months to plan, implement and evaluate the shift to community support. Among the impacts noted in NDTi's report is that in one CLS site, 16% of social care referrals were resolved at first contact (the council's customer contact centre), compared with 7% across the rest of the city. Another site reported that someone visiting a hub on Monday had a follow-up home visit on Tuesday and adaptation equipment delivered on Wednesday. CLS is not promoted as a cost-saving measure, but more community solutions means a drop in referrals to services, according to the evaluation. One site noted that referring 31 people to adult social care over 20 weeks led to annual savings of £110,788.

In Leeds, more than 300 social work staff practise the new approach. The council has replaced its 27-page self-assessment form used at the contact centre with a two-sided "conversation record" (still compliant with care legislation). The focus is on a discussion about support rather than seeing whether someone meets eligibility criteria.

If contact centre staff cannot resolve someone's needs in a phone call, they can arrange an appointment at one of 17 pop-up talking points. Under Leeds' traditional system, the target was for social work staff to see people within 28 days but this could be longer at busy times. Now, people can choose a community appointment slot up to six weeks in advance, with an average wait of 11 days.

Adult social services director Cath Roff calls the changes "the most transformative thing I've ever done", stressing that council-wide support is vital: "As much as I'm empowering social work staff by enabling them to explore new methods of working, I feel empowered by my chief executive and elected members to embrace this new approach."

Pitts agrees that senior leadership support is important, adding that "there are some conditions that make CLS more likely to take hold - a culture of collaboration and co-production".

Roff says Leeds had two choices: "Either we go down the road of ever-tightening interpretation of eligibility criteria to manage resources, or try a new approach. Social work services are increasingly becoming the 'border patrol', policing in order to manage reducing budgets. None of us came into social care to do that."

* Not her real name
Join the Social Care Network for comment, analysis and job opportunities, direct to your inbox. Follow us on Twitter (@GdnSocialCare) and like us on Facebook. If you have an idea for a blog, read our guidelines and email your pitch to us at socialcare@theguardian.com. If you're looking for a social care job or need to recruit staff, visit Guardian Jobs.

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Community approach to social work delivers more personalised care

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Gail* has a learning difficulty, mobility problems and is prone to angry outbursts. Leeds council adult social care staff have supported her intermittently over a few years, helping with self-care and chaotic living conditions. Recently, it considered commissioning weekly visits from a support worker to help Gail manage her home.

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Are you with #UsToo? - Glasgow Disability Alliance

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Are you with #UsToo? - Glasgow Disability Alliance

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As the #MeToo campaign has highlighted this week, insidious abuse and harassment are far too common in our society. Disabled women and girls are even more likely to face sexual harassment or assault than non-disabled women, as a survey by GDA and Wise Women previously uncovered in Glasgow

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Are you with #UsToo? - Glasgow Disability Alliance

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It's Hate Crime Awareness week, and as a Third Party Reporting Centre, GDA is joining our partners across the city in stepping up our efforts to raise public awareness that "Hate has no Home in Scotland". As the #MeToo campaign has highlighted this week, insidious abuse and harassment are far too common in our society.

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DPAC shortlisted for human rights award after parliament direct action

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DPAC shortlisted for human rights award after parliament direct action

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Linda Burnip, co-founder of DPAC, said she hoped the awards would be “another opportunity to reach people who we do not normally reach”, and might raise DPAC’s profile with MPs.

She said: “Our direct actions are designed to make sure that disabled people do have a voice and aren’t ignored

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Disabled activists who carried out a direct action protest in the heart of parliament have been shortlisted for a prestigious human rights award.
The human rights organisation Liberty has named Disabled People Against Cuts (DPAC) as one of just three nominees for its new Courageous Voices award, which recognises activists who have taken "bold action to stand up to those in power".

DPAC has been shortlisted for July's Summer Of Discontent week of action, which included a protest about cuts to social care in parliament's central lobby ( pictured).

Linda Burnip, co-founder of DPAC, said she hoped the awards would be "another opportunity to reach people who we do not normally reach", and might raise DPAC's profile with MPs.

She said: "Our direct actions are designed to make sure that disabled people do have a voice and aren't ignored."

She said parliament was "where decisions about our lives are made so it seemed the most sensible place to take our complaints, and obviously we plan to keep doing it".

The protest took place near the main Commons chamber, as Theresa May was taking part in prime minister's questions, and saw police officers barring the path of activists - including several affected by the government's decision to close the Independent Living Fund - to prevent them approaching the Commons chamber.

The protest was supported by Labour leader Jeremy Corbyn, shadow chancellor John McDonnell and Green party co-leaders Caroline Lucas and Jonathan Bartley.

It led to McDonnell calling for disabled people to be given the job of designing the solution to the social care funding crisis.

He told Disability News Service as the protest was taking place that it was "exactly what people have the right to do, to demonstrate, to make sure MPs are aware what they are experiencing, what disabled people are experiencing".

And he said the direct action was "perfectly justifiable in the light of what is happening, with people's suffering as a result of austerity".

Courageous Voices is one of several awards that will be presented at Liberty's 2017 Human Rights Awards on 24 October at London's Royal Court Theatre.

Martha Spurrier, director of Liberty, said: "Disabled People Against Cuts embody the spirit of the Courageous Voices award and, as their Summer of Discontent campaign shows, their work is needed now more than ever.

"Equality and human rights for disabled people aren't a commodity that [can]be rationed or reduced as a money-saving exercise.

"DPAC have been fearless and creative in getting that message across - standing up to those in power, challenging injustice and getting their voices heard."

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DPAC shortlisted for human rights award after parliament direct action

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Disabled activists who carried out a direct action protest in the heart of parliament have been shortlisted for a prestigious human rights award. The human rights organisation Liberty has named Disabled People Against Cuts (DPAC) as one of just three nominees for its new Courageous Voices award, which recognises activists who have taken "bold action to stand up to those in power".

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DPAC shortlisted for human rights award after parliament direct action

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Independent Living and the Medical Model of Disability

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Independent Living and the Medical Model of Disability

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The word 'disabled' is used as a blanket term to cover a large number of people who have nothing in common with each other, except that they do not function in exactly the same way as those people who are called 'normal'. Consequently, this large number of people are considered 'abnormal'. We are seen as 'abnormal' because we are different; we are problem people, lacking the equipment for social integration. But the truth is, like everybody else, we have a range of things we can and cannotdo, a range of abilities both mental and physical that are unique to us as individual.

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Independent Living and the Medical Model of Disability

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Martyn Sibley – For the Billion | DisabledGo News and Blog

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Martyn Sibley – For the Billion | DisabledGo News and Blog

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Martyn Sibley - For the Billion

My personal story - Martyn Sibley

It was June 1999. There were wires and tubes coming out of my body everywhere. I was hallucinating. I was sure the nurse was my Irish grandma (who had passed away nearly 10 years before). Worst of all I was violently sick every hour, for days.

I'd never been in hospital for longer than a night. The Intensive Care Unit at Stanmore hospital was a very scary place. Not because of the people or the decor. But because I was in unfamiliar territory.

I was inbetween two major operations. The first had been to remove my growth plates from my spine. By deflating my lung to get to them! I therefore had a chest drain in. The sickness was all due to a bad reaction with the anaesthetic. The hallucinations were from the morphine pain relief. The nurse was Irish, but not a relation.

It had taken 6 hours to complete stage one.

The second operation would be a week later, and would use a different anaesthetic. This would be a longer procedure, to fix two titanium rods to my spine - using all sorts of nuts and bolts. This was to correct the scoliosis curvature I had been suffering from for years.

Stage two took 8 hours! I woke up the next day with a tracheostomy (a big tube down my windpipe). Plus a whole lot of pain...
Why was this moment so significant?
Once I'd stabilised enough to come off the hallucinogens and tracheostomy, my brain went into panic overdrive.

What if they made a mistake? What if this pain never went away? What if I never got out of this hospital? What if I couldn't sit up again? What if I lost my already minimal arm strength?

I'd love to tell you it was all easy thereafter. It wasn't. Every day was a battle. A year later, aged 16, I had gone down to 4 1/2 stone in weight! With no energy for school work. Plus I was having anxiety attacks out in public.

Day by day. Week by week. Month by month. It gradually got better. In the long run I actually think it was the making of me! It taught me lessons on patience, perseverance, positive thinking, hope, not giving up, celebrating the little victories, and that all things (bad and good) do pass.

Naturally I hit other barriers through my life afterwards. But they were far less medical, less painful, and less severe.

Most of all, because I'd survived and learned so much from this experience - it made leaving home, driving an adapted car, getting a Bachelors & Masters degree, living independently with carers, travelling the world (doing activities like skiing, sailing, and flying a plane), and running multiple businesses EASY!

Well... easier.

The Billion People Problem

Having a happy life with Spinal Muscular Atrophy, needing a wheelchair, and relying on carers mostly hinges on societal barriers.

- When a pub has steps, I'm disabled. When there's wheelchair access, I'm Martyn.

- When the bus driver can't be bothered to help get the ramp for me, I'm disabled. When they assist me with the ramp, I'm Martyn.

- When a prospective employer sees my wheelchair, and not my talent. Yep you guessed it, I'm disabled. When they remove any barriers from the interview process, I'm Martyn.

Whether someone uses a wheelchair, has difficulty walking, has a visual or hearing impairment, is autistic, has Downs Syndrome, or any other long term health condition - they are considered disabled under the Equalities Act 2010. That's to say no unreasonable barriers should disable them.
Some Shocking Stats:
Disabled people are more than twice as likely to be unemployed as non-disabled people.

Life costs you £550 more on average a month if you're disabled.

Disabled people are twice as likely to be physically inactive (43 per cent) than non-disabled people (21 per cent).

(Sources: Scope and English Federation of Disability Sport)

Those who aren't so familiar with disability presume it effects a tiny minority of people. They think things are all ok now. Or at least that others are dealing with it. They think it doesn't concern them.

Did you know there's approximately 13 million disabled people in the UK? Furthermore that there is an estimated 1 billion disabled people in the world?!

Even with accessible environments, inclusive customer service, and fair organisational procedures; there are two more factors we still need to address.

1) How disabled people gain resilience. Resilience not only to survive medical procedures and social oppression, but to thrive in life. Thrive with our health, independence, finances, work and leisure. There has to be more to life than just hospital visits, managing carers, and fighting for wheelchair funding.

2) Disability hate crime is on the rise. We need everyday people to not fear us, but to embrace diversity. 'Difference' is a good thing. So let's promote more tolerance and compassion for all.
Everybody Has A Responsibility
Not only is 1 billion a vast number of people still being oppressed by barriers. Many of these people become disabled in later life. This shows us that everybody should be interested for their own wellbeing, as well as for their friends and family and beyond.

On a societal level it's said the spending power of disabled people is £249bn. Even in tourism around £12bn is available for businesses wanting to make inclusion a win:win.
Our Solution
So we agree - 1 billion people is a lot of humans!

I'm just one guy who raises awareness on this issue. Since graduating from university and working in the disability space, it's estimated I've run projects impacting well over 1 million disabled people. Recently resulting in my being voted Britain's third most influential disabled person.

It's been tough, with many potholes along the way. But I've loved every minute of it. From my time at a national disability charity, to my blogging, to my book, to my podcast, to Disability Horizons (available in 5 languages), to my speaking gigs, to client work for governments, businesses and charities.

It all was fantastic.

It's naturally been a team effort. A community effort. We've made so much progress together. We have a tsunami for change. And by no means are we done. We're ready to crank it up another gear.

As of today we're launching #ForTheBillion. It's a new project to address the above issues.

This is all because of my experience back in those dark days at Stanmore hospital. I want anyone in a similar boat to have a helping hand. To learn from those who've sailed those stormy seas. Plus I wish for the world to have no more barriers. Both reasonable and unreasonable.

The projects aims are to:

- raise awareness of the issues facing the 1 billion disabled people on earth

- give disabled people the tools for personal achievement, and show them how to help others

- support organisations and professionals to empower disabled people (not dictate to them)
How Can I/We Help?
- If you are disabled, struggling with any part of life, and looking for answers - please sign up to our newsletter here.

Not only will you get our amazing Disability Horizons articles. You'll be the first to hear about our upcoming opportunities. Opportunities for personal growth and community contribution.

- If you are from an organisation supporting disabled people, please sign up to the above newsletter too. Feel free to share our upcoming opportunities with your service users.

- If you are an organisation or business seeking help with inclusive employment, projects, goods and services - please contact us here.

We'll then share our ideas on addressing your needs. Whether thats with us or with our partners.

- If you would like to support us by sponsoring our digital content, digital events, coaching programmes, or offline events - please contact us here.

We'll then send you our media pack showcasing our options. Without funding we can't make as much impact.
It's Already Happening
Our projects have been going for over 5 years now. We're already changing the world. However we need more disabled people to join our movement. Plus we need more resources. So we can create a bigger impact for the one billion disabled people.

Are you ready to help us kick ass?!
Martyn
- World Changing Blogger and Author
- Captain of Inclusion
- CEO and Co-Founder Disability Horizons and Disability United
- Co-Founder Accomable
- Very Social on Facebook | Twitter | Linked In | Google+
The post For The Billion appeared first on Martyn Sibley.

More posts from author

Labour conference: Benefit assessment nurses must be held to account, says Abrahams Labour conference: New disabled MP pledges to fight government's assault on rights

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Martyn Sibley - For the Billion | DisabledGo News and Blog

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My personal story - Martyn Sibley It was June 1999. There were wires and tubes coming out of my body everywhere. I was hallucinating. I was sure the nurse was my Irish grandma (who had passed away nearly 10 years before). Worst of all I was violently sick every hour, for days.

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What we talk about when we talk about coproduction in mental health | The New Mental Health

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What we talk about when we talk about coproduction in mental health | The New Mental Health

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The following is the text of an opening speech given by Mark Brown at 'Creativity in Coproduction' conference at the King's Centre Norwich on September 26th 2017
The first thing I want to tell you about coproduction is it's really, really hard. It's something that exists in theory far more than it exists in actuality. If you get away from using coproducton as just a description for an approach to making thing happens you have to think about what coproduction actually means. Coproduction means 'making together'. It sounds simple. From childhood we learn to play cooperatively, to all muck in to make something bigger and more enjoyable than what we could have made on our own: a glorious image of carefree imagination and harmonious satisfaction. But if we think back to childhood with slightly less rosy glasses we'll also remember the fallings out, the arguments, the feeling of being picked last for the team, the kid who always took their ball back and went off in a huff if they didn't get to be captain, the ridiculous longstanding vendettas and tearful recriminations when the games fell apart or someone didn't follow the rules that everyone else had agreed on.

Working together on things is amazing, but it's also difficult because working together is a bit of work in itself aside from the actual thing you're trying to create. Coproduction can be amazing when it works, but as we'll hopefully hear and experience today, making it work is half of the battle.

As is the way with many ideas that are thrown about in health and social care, coproduction is an idea that originally came to prominence as a solution to a particular problem then somehow broke free of that original problem and, like a story that is passed from person to person; from campfire to campfire, it lost its origins and turned into something that stood on its own. Lost in the telling, the original problem became obscured and the business of turning coproduction into a training course or an academic paper or call to arms began.

So where did coproduction come from and what problem is it trying to solve? To understand that we're going to have to go on a journey, back, back, further back. Back to a time when men smoked pipes and ignored women and an entire country was still reeling from a great blizzard of destruction and rock 'n' roll hadn't even happened...

Where did coproduction come from?

Our conception of public services in the UK really has its beginning in the postwar period with the founding of The Welfare State. The experience of the war and of war planning had given the UK a taste for big ministries creating things for the common public good. It was the high point of the dream of planning and standardising everything. For a while people were over the moon, because suddenly they were getting to access for free things like healthcare and support which hadn't been open to all previously. In a world where there was still rationing and where streets in cities still looked like smiles with missing teeth, people were grateful to the clever people who met their needs or at least this was what the public myth told us. The reality was that there were always people who failed to get their needs met or who didn't have choices or didn't feel able to escape from what other people felt was best for them. People with mental health difficulties often fell into that category.

This is the way with such ideas in health and social care: they turn from something that people do to a thing in themselves. We end up calling for more coproduction or we end up training people in the idea of coproduction or we end up suggesting coproduction is the solution to all ills. In reality, coproduction is something messy, glorious, frustrating and disappointing all at once. In the past seven or eight years coproduction has been something that has been suggested as a solution to all of the challenges that we face in health and social care. No money? Coproduction! Service unpopular? Coproduction! Not sure what to do next? Coproduction! Certain what to do next but not sure if people will like it? Coproduction!

Originally, coproduction was suggested as a solution to a very particular problem. Public services, of which mental health support and treatment can be one, were seen as being transactional. People who were paid designed and delivered services based on research and people who weren't paid but did need a service consumed what the clever people made. This was based on a model of public services designed at the time when rational planning was all the rage; where people who smoked pipes and had slide rules in their pocket would look at all of the available evidence and data and decide what people needed and then people were grateful for what they got. People using a service turned up, took whatever the clever people had developed and then went away again. Bish bosh. Jobs a good 'un.

Two forces created the idea that there might be an alternative to this centrally planned world; one from within professions and public services and one from outside. Inside services people began to wonder if they were indeed getting the right end of the stick about what people wanted. Why, when we do all of this hard thinking, does it seem like people really don't like or appreciate what we're trying to do for them? What is it we're missing? The conclusion that some people came to from within public services was that, perhaps, they didn't know everything. One thing they often didn't know was what it was like to receive a service designed on their behalf by someone who didn't face the same pressures and challenges that they did. Public services had spent a lot of time people asking whether people liked things via consultations and involvement of the public; but that still didn't seem to translate into things that did what people really wanted them to. By the 1970s, many professionals across health and social care were beginning to wonder what gave them the right to wield such power.

At the same time, over the same period time, people began to examine more carefully whether the services that were being provided really were in the interests of those whom they were provided. People became more critical of the ability of those designing and running services to define the reality and lives of those who received them. Across health and social care patient groups sprang up. In mental health The Scottish Union of Mental Patients was first established by mental patients at Hartwood Hospital in July 1971 when a group of people began to seek better treatment and conditions. In 1973 The Mental Patients' Union was founded by people who used Paddington Day Hospital. These groups tended initially to want to exert pressure on the powers that be to improve standards and remove bad practices. As time went on, such groups grew and evolved. Some wanted to be left alone to develop their own solutions and their own services and projects. Others wanted to change the public sector services that existed. The charity sector in mental health ranged from being able to include these demands to being completely against them.

So from within services you had people wondering how they might make better services and projects that would really meet the needs of people in ways that didn't tell them to 'sit down, shut up and take what they're given' and from the side of people who used such services you had people who were increasingly confident in the idea that they knew better than professionals what they and others like them wanted and needed. Coproduction in its purest sense is like the secret lovechild of those two different trends; people who design and work for services and people who want better ones getting together to make something new happen that wouldn't have happened in quite the same way if they hadn't hooked up. It all sounds simple doesn't it? A glorious Mills and Boon romance. But, like every good love story there must be obstacles along the way. And, crikey are there some obstacles.

Danger! Risk and reward ahead

In a perfect version of coproduction, people would come together spontaneously, easily decide what they were trying to make and then get on with making it, carrying on until everyone was finished and everyone felt they had made the contribution they wanted to make. There wouldn't be set end point from which the project began. Somehow, as if by magic, people would find each other and have all of the right skills and resources to create a magical new thing. We, however, live in the real world.

One of the first obstacles to coproduction is power. Some people have control of resources and some people don't. Some people are paid for their time and some people aren't. In the perfect idea of coproduction people from different disciplines, with different experiences, come together as equals to work on building new things. But there are always constraints to this. In most coproduction projects someone has already set the initial direction of travel. From the beginning the project is trying to get to a particular place or has already decided what the particular problem is to be solved. So, sometimes, it isn't possible for coproduction to really be completely defined by the people involved in the process. Some people in coproductive activities will have more power than others. If a professional has managed to convince their boss that the project they are working on should be done in a coproductive way, that professional will have to answer to their boss, or their funder, or the government. Even if it becomes apparent for everyone working on the project that the thing they're working towards won't be useful when it's finished because it's not the thing that people really need, they'll have to finish it. In lots of coproductive situations I've seen people try to do a really weird thing: they try to avoid doing the thing they'd be good at because they think that is something that gives them power that might make others uncomfortable. I've seen professionals avoid talking about how things in services really work, even though that's vital knowledge for the coproduced project to work. I've seen people avoid talking about what they know other people want because they're worried that means that they aren't doing a useful thing in coproduction. I've seen people from all walks of life ignore their previous experience when coming up with ideas because they're worried that they'll break the coproduction spell by pointing out everyone isn't equal. In coproduction how we differ from each other is important and making best use of it more so.

Another obstacle is personal resources. Sometimes when we have a problem we don't have the resources or the will to be involved in developing our own solution to it. Sometimes what I want is a transaction. What I want when my mental health is suffering is a service I can use that is ready for me to use. At that point I can't be involved in a twelve month process of designing a service to suit me. Even if I could, I might try to make that service into one that would be perfect for me at that point without thinking about other people who might need to use it. Not everyone has the same capacity to be involved; or might need extra help and support to contribute. Good coproduction works out what it needs to make a project happen and then works out who is best to do what bits. It's about finding out how useful you can be to making that project work. This can be hard for many of us when we've had experiences where people have told us that we're no use to anyone or where we've felt rejected or ignored. Coproduction is the job of making something new, but it's also an emotional experience and an experience of getting to know and work with people we might never have expected to work with. This can be difficult for people who work with services and for people who don't. It can be hard to learn to trust each other.

A further challenge in coproduction is responsibility and respect. For many of us who have been users of services and tried to change them our experience has been one of being ignored or spoken over or belittled by people with more experience or what feels like a higher social position than us. This can make us very good at entering into consultations or meetings and being very clear and very strident about what we don't want to happen but less used to working with what we do want to happen. For many professionals, even with the highest of intentions, it can feel challenging to step out of the safety of your professional role and to take part in something more collaborative. For anyone in a coproduction project, respect for each other and responsibility to the project is vital. Setting the contract for how you'll work together is a huge step towards actually getting something you'll all be proud of out of the process at the end.

A further thorny issue is to whom the final product of a coproduction process belongs. Coproduction is about sharing ideas and sharing work and making something happen that wouldn't have happened in the same way if different people had been involved. If it's coproduction everyone involved will have made it what it is; but too commonly those on one side of the professional divide get to carry the work forwards and those on the other side get left behind. A good coproduced project will be thinking about what happens after the process is finished and how everyone involved might profit from what has happened. I know we're all doing it for the good of humanity because we are all saintly and have huge hearts; but we also need something for ourselves too so that we can be replenished or rewarded or recognised.

The final issue is working out what is actually good to coproduce. When I put my bins out I'm happy that the bin people take them away. I don't want to meet with them every week for six months to work out exactly how it should happen. Similarly, if I'm having heart surgery I don't want to coproduce my surgery with a group of non surgeons who reckon they know what might work. I do however want the information I'm given and the pre and aftercare I receive to be coproduced by a coalition of people who've been through that surgery and professionals who know how the system works. Knowing why you're working together and knowing why this is the thing to be working on is vital to ensuring what you make together useful to other people.

Coproduction isn't magic: it's people and processes

Coproduction is about power, purpose, respect, responsibility, resources and knowing what will happen next. Today is about hearing from people who been there and done that and already have coproduced the t-shirt.

Coproduction isn't easy. It's not made any easier by giving it a mythical status or a magical power. Coproduction is making things together. It must make good things and it must be a good way of being and working together. Coproduction is an investment for anyone who takes the risk of taking part. Being involved in coproduction makes us vulnerable and powerful at the same time. It's easy to forget that we are all glorious, complicated, amazing, confusing creatures filled with our own vanities and insecurities and powers and surprises. We might be keen to be involved in coproduction because we want to change the world; but we have to be prepared for the experience to change us. Making things together in mental health in an equitable and inclusive spirit requires many qualities of us. It requires generosity, it requires diplomacy, it requires, and this will sound a little sappy, love and respect for each other.

Coproduction in mental health challenges us to make the things we want to see in the world together. Coproduction is about putting our values into action and making things that work by making processes for working together that work.

We can't just say what we're against or what we're for. We have to do.
Mark Brown is development director of Social Spider CIC. He is @markoneinfour on twitter.

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What we talk about when we talk about coproduction in mental health

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The following is the text of an opening speech given by Mark Brown at 'Creativity in Coproduction' conference at the King's Centre Norwich on September 26th 2017 The first thing I want to tell you about coproduction is it's really, really hard. It's something that exists in theory far more than it exists in actuality.

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The additional labour of a disabled PhD student

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The additional labour of a disabled PhD student

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I address issues such as a lack of representation when researching PhD life, the impact of the services which are meant to be there to help and the complexities of juggling the additional time-consuming events which occur when you are disabled, with PhD time, a home life and work. This is especially relevant in the UK

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The additional labour of a disabled PhD student

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'...always tried to be as non-disabled and independent as possible, in an attempt not to ‘hassle’ people or cause too many ‘problems’. I would say that only my parents truly understand how much support and help I need.'

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Social workers reveal the extent of social care meltdown – Care And Support Alliance

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Social workers reveal the extent of social care meltdown – Care And Support Alliance

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'“I had to reduce the care package for three brothers who live together. Each has either a mental health problem, physical or learning disability. They had a substantial care package for 15 years. It kept them safe from financial abuse and enabled them to live in the community. After reducing the care package two of them went into residential care and died. The other was admitted to hospital with dehydration and hypothermia'

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The findings of a new survey of social workers by Community Care Magazine, supported by the Care and Support Alliance, provide shocking evidence of just how threadbare the social care safety net in England has become.

The survey⁽¹⁾ gives a unique insight into how many social workers feel about the frustrations of their day to day work as they 'tell it how it is'.
Read the full report: CSA Social Workers Speak Out Report 2017 FINAL WEB
There were 469 responses from social workers to the online survey, from every region of England, and their comments reveal the incredibly difficult position they are often in as they strive to support people in desperate need without enough cash in the system. For example:
"[There is] strong pressure from my line manager and commissioners to reduce costs as a main priority." "Colleagues constantly battle to keep packages at an adequate level to support clients/assist to keep them safe." "Care packages are not getting agreed by the funding panel. I am having to submit reduced care packages to the panel in the hope that some support will get funded, as opposed to none." "I cannot get new packages of care agreed or increases agreed when needs have increased."
These comments need to be seen against a context in which nearly 7 in 10 68%⁽¹⁾ respondents to the survey said they felt expected to reduce care packages because of cost pressures in their local authority; more than 1 in 3 (37%) said they believed they couldn't get people the care they needed; and, chillingly, more than 1 in 4 (28%) were not confident that the reduced care packages they had to administer were 'fair and safe'. In addition, 4 in 5 respondents (81%) said family and friends are being expected to provide more support to 'fill in' where care has been reduced.

In the survey the reason given most often by social workers for having reduced a person's care package was because their needs had changed. However, far more worryingly this was followed by budget pressures and because local authority support is now more restricted. The examples some respondents gave describing the plight of older people and disabled and mentally ill adults whose social care and support is being restricted or removed because of lack of resources were profoundly concerning:
"I worked with a woman who could strip wash but who couldn't reach her back and intimate parts of her body so had paid carers for years as part of her personal budget to help her...however it was cut as she was physically able enough to strip wash. This was devastating for her." "A person with hoarding issues and a tendency to eat rotten food had their shopping and housework call cut, resulting in an admission to hospital with food poisoning." "After one service user was told her care package was being reduced she seriously self-harmed and had to be detained in hospital." "I had to reduce the care package for three brothers who live together. Each has either a mental health problem, physical or learning disability. They had a substantial care package for 15 years. It kept them safe from financial abuse and enabled them to live in the community. After reducing the care package two of them went into residential care and died. The other was admitted to hospital with dehydration and hypothermia." "(Reducing care packages) has led to individuals becoming more isolated, engaging in risky behaviour and being exploited." "The person requires support with walking to the bathroom but due to the cost he is now required to contribute towards it so he has decided he would rather have the risk of falling than an evening call." "There has been pressure on an elderly husband due to a reduction in assistance to his wife, causing the breakdown of the relationship. He ended up in hospital and she was placed in residential care." "Lunch calls and toileting calls are being reduced from 30 minutes to 15 minutes to save costs..." "[We have] removed lunch calls for service users with dementia." "In my local authority I work for managers who will not approve time for a care worker to visit an older person and prepare a hot meal. I am told to record telling the individual about hot meal deliveries as a reasonable way to meet this need. Meals on wheels are self-funded within the authority and can cost a minimum of £42 per week. Lots of my service users worry about spending money and so go without a hot meal."
The survey also found that support to get out and take part in social and leisure activities was the type of help which was most commonly being reduced (72%), followed by help with domestic tasks such as food shopping and cleaning (67%).
Caroline Abrahams, Charity Director at Age UK and co-Chair of the Care and Support Alliance said: "This is the first time that England's social workers have spoken out in such numbers, blowing the whistle on just what a drastic state of decline social care is now in." "The social workers' descriptions of what the cuts mean in practice for disabled people, those with mental health problems and older people make for tough reading and it is impossible not to be angered and saddened by them." "It is though important to remember that while social care is a service administered by local authorities, 'the buck stops with Ministers' and the suffering that vulnerable people are experiencing today is the direct result of the decisions successive governments have made to underfund social care. The extra £2 billion this Government has pledged will certainly help but the funding gap is far larger, so the situation is certain to worsen without further action." Mark Lever, Chief Executive of the National Autistic Society and co-Chair of the Care and Support Alliance said: "Social care became an important topic during the recent General Election campaign and in the Queen's Speech, when the Government committed to consulting on proposals to place social care on a sustainable financial footing for the future. Since then, however, it has all gone ominously quiet. "This survey of social workers demonstrates why it is so crucial that this Government tackles the social care crisis as an urgent priority. Some of the suffering described is sickening and I think decent people in this country will be appalled at how little support is now available for people in need. People should be rightly anxious about what this might mean for themselves and their loved ones if they should they need help."
In addition, more than 4 in 5 respondents (83%) did not think there was enough variety and quality of social care provision in their area for people to exercise genuine choice and control over the care they received.
Jane*, a locum social worker, said: "As a locum member of staff - I've seen social workers again and again and again being expected to make cuts and if you don't your contract's cut. It's brutal. Obviously, we're not told to make cuts - but we are! It seems to me to be that those who are well informed about their rights are able to get the care they need but if they're old or unwell and need someone to advocate for them - they go without." "When my hours were cut it was a stressful time for me. I took the wrong medication and ended up in hospital, and this made me feel like my health had not been considered at all. Being in hospital left me feeling anxious and upset and I worried if something else might happen once I got home." Margaret Willcox, President of the Association of Directors of Adult Social Services (ADASS), said: "This telling and poignant report lays bare the invidious decisions that are having to be made by social workers and managers every day. Working within finite budgets is challenging and staff have to consider how best to meet assessed needs within those financial parameters. "We welcomed the additional £1 billion in extra funding this year, but we need a sustainable funding solution for social care. "Adult social care remains at a tipping point and this survey is further evidence of why the issue needs to be treated as a national priority. We look forward to contributing to debates about finding a long-term sustainable solution to adult social care funding and delivery." Notes on the survey Social care user Rachel Looby, 30, from Harrogate, needed medical help after the amount of social care she received was cut. She said:
Social care budgets have been cut by more than £6bn in real terms over the past seven years⁽²⁾. As a result, half a million fewer older and disabled people receive care now than did five years ago⁽³⁾, and research has estimated that more than one million people are not getting the care they need⁽⁴⁾.

1. 469 social workers and other professionals who undertake care assessments and reviews responded to the survey which ran online on Community Care's website between 12 April and Friday 9 June 2017. We asked a series of questions relating to instances where they had reduced service users' care packages over the last 12 months. In one question respondents were asked 'what is the most common reason you have had to reduce people's care packages?' and invited to complete a free-form box. Where respondents mentioned multiple reasons, they have been counted separately.

2. ADASS, Budget survey 2017: https://www.adass.org.uk/media/5994/adass-budget-survey-report-2017.pdf - total cumulative savings in adult social care since 2010 will amount to over £6.3bn by the end of March 2018.

3. Comparing NHS Digital, Community Care Statistics, Social Services Activity, England for 2010/11 and 2015/16.

4. Age UK, Health and Care of Older People in England 2017, February 2017: http://www.ageuk.org.uk/Documents/EN-GB/For-professionals/Research/The_Health_and_Care_of_Older_People_in_England_2016.pdf?dtrk=true

Are you a part of our care system, be it as a care user, carer, social worker or family member? We'd love to hear your story. As an Alliance campaigning to get people the care they deserve we want your stories about the state of the system. Please tell us about your experience, or if you want to know more get in touch. We would always contact you by email before we share your story and you have the choice to remain anonymous if you would like.

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Social workers reveal the extent of social care meltdown

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The findings of a new survey of social workers by Community Care Magazine, supported by the Care and Support Alliance, provide shocking evidence of just how threadbare the social care safety net in England has become. The survey(1) gives a unique insight into how many social workers feel about the frustrations of their day to day work as they 'tell it how it is'.

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Hidden in plain sight: inquiry into disability-related harassmentInquiry into disability-related harassment

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Hidden in plain sight: inquiry into disability-related harassmentInquiry into disability-related harassment

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The really serious cases catch the headlines. But what about the constant drip, drip, nag, nag of the so-called ‘low-level’ harassment that many disabled people face on a daily basis. It ruins their lives. They don’t have the confidence to go out. It undermines their ability to be part of society. It makes them behave differently. p. 5
The second is that no one knows about it. Schools don’t know how many disabled pupils are bullied; local authorities and registered social landlords don’t know how many antisocial behaviour victims are disabled; health services don’t know how many assault victims are disabled; police don’t know how many victims of crime are disabled; the courts don’t know how many disabled victims have access to special measures, what proportion of offences Inquiry into disability-related harasment against disabled victims result in conviction or how many of these offences result in

a sentence uplift; and the prisons don’t know how many offenders are serving sentences for crimes motivated by hostility to disabled people. p. 6

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Too ill to get to the jobcentre? If you’re disabled you may still be sanctioned | Society | The Guardian

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Too ill to get to the jobcentre? If you’re disabled you may still be sanctioned | Society | The Guardian

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t's all over now, isn't it? With Brexit in focus and the coalition government long out of office, it would be easy to believe the Tories' brutal "welfare" policies were a thing of the past. The bedroom tax is old news. The once notorious "fit for work" tests are no longer set pieces in ministers' press speeches. Benefit sanctions - for years, the epitome of post-crash "tough on welfare" posture - are a dated crisis.

Except, that's what the Tories would like you to think. The language of disabled people "languishing" on sickness benefits may have quietened and enthusiasm for austerity - now an electoral risk - be spoken of less zealously, but the policies have gone nowhere. For proof, take a look at the official figures released this month showing the scale of benefit sanctions against disabled and chronically ill people since the Conservatives first introduced stricter measures. More than 70,000 people on the out-of-work sickness benefit (employment and support allowance) ESA had their benefits stopped between December 2012 and December 2016. More than 5,000 had them stopped for at least six months. That's wheelchair users and people with learning difficulties left with bare cupboards and cold homes.

Related: Sharp rise in rejected claims for disability benefit

ESA sanctions are made for a fixed period of one, two or four weeks. But they carry on indefinitely if claimants are deemed not to follow jobcentre rules. The vast majority of recent ESA sanctions - more than 90% since December 2015 - have been a punishment for people failing to take part in "work-related activity": anything from skills training or drawing up a CV to community work placements. Disabled people going through the system repeatedly report this can mean being sanctioned for not going to a meeting despite being in too much pain to get out of bed.

This is not a coincidence but, rather, reflective of a political culture that has fetishised getting disabled people into work at any cost. It's the same thinking that from April resulted in many people on ESA permanently losing £30 a week under the guise that it would give them an "incentive to work". Mid-recession, and on the brink of the biggest squeeze on workers' living standards in decades, the drive to sanction disabled people too ill to work spoke to the birth of a wider narrative of suspicion around disability benefit claimants, actively propagated by large sections of the media and the political class.

Removing the money people need is shameful. But to do this to disabled people is a stain on the national conscience

How else could sanctioning have been allowed to continue? Two years ago, there were warnings sanctions were unfair, excessively punitive, and causing destitution. Whitehall's official spending watchdog has found there is no evidence sanctions actually work. Yet barely any modification has been made. In July, the Department for Work and Pensions announced that people with mental health conditions who have their jobseeker's allowance sanctioned will now be eligible for immediate access to hardship payments - as if not leaving a young mum with depression without food for two weeks is vast progress.

The headlines may fade but the misery doesn't. In fact, it's increasing. Early signs of the roll out of universal credit - the "all in one" benefit system - suggest the new benefit is adopting a particularly pernicious sanctioning culture. This month's same government figures show the number of sanctions on people on UC are at an all-time monthly high, and since its launch in 2015, more than 100,000 UC claimants have been penalised. Meanwhile, with so many families facing sanctions and benefit delays, the Trussell Trust reported a record number of its food banks running out of food this summer.

Social policy reform based on the premise of removing the money people need in order to live is always shameful. But to do this to disabled people - who are receiving benefits because they are not well enough to work - is a stain on the national conscience. Theresa May and her ministers, by choosing to continue the heightened sanction regime, are as complicit as their predecessors who launched it. Five years on, the government is still starving disabled people. That this is now largely occurring under the radar makes it all the more disturbing.

* Frances Ryan writes the Guardian's Hardworking Britain series

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Too ill to get to the jobcentre? If you're disabled you may still be sanctioned

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t's all over now, isn't it? With Brexit in focus and the coalition government long out of office, it would be easy to believe the Tories' brutal "welfare" policies were a thing of the past. The bedroom tax is old news. The once notorious "fit for work" tests are no longer set pieces in ministers' press speeches.

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Making the Sustainable Development Goals Consistent with Sustainability

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Making the Sustainable Development Goals Consistent with Sustainability

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and UNEP’s “improving the quality of human life while living within the carrying capacity of supporting eco-systems

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Global Footprint Network, Oakland, CA, United States

The UN's Sustainable development Goals (SDGs) are the most significant global effort so far to advance global sustainable development. Bertelsmann Stiftung and the sustainable development solutions network released an SDG index to assess countries' average performance on SDGs. Ranking high on the SDG index strongly correlates with high per person demand on nature (or "Footprints"), and low ranking with low Footprints, making evident that the SDGs as expressed today vastly underperform on sustainability. Such underperformance is anti-poor because lowest-income people exposed to resource insecurity will lack the financial means to shield themselves from the consequences. Given the significance of the SDGs for guiding development, rigorous accounting is essential for making them consistent with the goals of sustainable development: thriving within the means of planet Earth.

Introduction: Sustainable Development Goals (SDGs) and Their Context

Sustainable development has finally become the North Star for the international community. While introduced only 30 years ago to the UN through the "Brundtland commission" ( World Commission on Environment and Development, 1987), it has now moved center stage: it is referenced on the UN's home page, and it has its dedicated website. This extraordinarily positive public endorsement reflects the world's official commitment to everyone's wellbeing (development), while recognizing the need to operate within the planet's ecological limits (sustainable). This is the essence of any serious sustainable development definition, including WWF, IUCN, and UNEP's "improving the quality of human life while living within the carrying capacity of supporting eco-systems" [ WWF (World Wide Fund for Nature), IUCN (International Union for Conservation of Nature), and UNEP (United Nations Environment Programme), 1991] or the Brundtland commission's "sustainable development is development that meets the needs of the present without compromising the ability of future generations to meet their own needs" ( World Commission on Environment and Development, 1987). While the latter does not explicitly reference biophysical constraints or resource security (the inverse of biophysical constraints), it does so implicitly: a depleted planet will not be able to provide the necessary physical inputs for future generations.

The fact that the world's regenerative capacity is overstretched is hardly disputed, nor that natural capital is becoming a limiting factor for current and future human activities. The Millennium Ecosystem Assessment (2005) and research backing the planetary boundaries initiative ( UNFCCC, 2015; Huntingford and Mercado, 2016) document severe ecological overuse, including rapid biodiversity loss, excessive nitrification, and climate change. The limitations imposed by the latter has gained more prominence through the 2015 Paris Climate Agreement's target to not exceed 2°C warming over pre-industrial temperatures (ideally no more than 1.5°C) ( UNFCCC, 2015). Yet current concentrations of 409 ppm CO ₂ in the atmosphere may already commit humanity to 1.5°C warming ( Huntingford and Mercado, 2016). If indeed 450 ppm CO ₂e is the upper limit for giving humanity a high probability of staying below 2°C ( IPCC, 2014), and current emissions lead to an annual 2-3 ppm increase in the atmospheric CO ₂ concentration (assuming, for simplicity's sake, that non-CO ₂ greenhouse gases can be neglected, while in reality they add significant warming pressure), then humanity has far less than 20 years of current CO ₂ emissions left for the next millenium and beyond (far less than 700 Gt CO ₂e), whether from fossil fuel use, cement production, GHG emitting agricultural practices, or land-use change ( Rockström et al., 2017).

Also, humanity's current overall overuse of the planet's ecosystems can be quantified. One comprehensive metric adds up all of humanity's competing demands for biologically productive space: area for crops, fish, livestock, fiber, timber, the sequestration of excessive CO ₂ from fossil fuels, and productive areas used for cities and roads. In essence, this approach is straight forward, adding up all non-overlapping area uses needed to regenerate what people demand. The sum total of this area is humanity's Ecological Footprint ( Wackernagel et al., 2014). The latest, most likely conservative, estimates indicate that humanity's demand exceeds the available capacity by over 68% ( Borucke et al., 2013; Global Footprint Network, 2017). Such overuse occurs because people can emit more CO ₂ than the land and the oceans sequester, trees can be cut more quickly than they regrow, and fish can be harvested faster than they restock. As the flows of natural capital demanded by human activities exceed what natural capital regenerates over the same time period, this metric reveals stock depletion leading to environmental degradation. Environmental degradation means that these ecosystems ability to regenerate is reduced. For some time, this gap between human demand and regeneration can be bridged by the draw-down of natural capital, such as through forest, groundwater, soil or fish sock depletion, or by building-up of waste sinks such as CO ₂ accumulation in the atmosphere. But the draw-down cannot last, as explained in the carbon emission example above, which represents a significant portion of current global overuse.

Given the call for sustainable development and the clearly documented physical constraints, the question becomes whether according efforts are successful in achieving the overarching goal of wellbeing for all, within the means of nature.

The most significant global effort to comprehensively address sustainable development are the UN's SDGs ( United Nations, 2015) launched in September 2015. They are unprecedented and unique, and we profoundly laud the UN for having been able to successfully orchestrate their coming into being. Developed by UN member nations, and adopted by 190 countries, these 17 goals and their 169 targets identify global development priorities, effectively defining sustainable development through the selected targets.

Those targets provide measurable benchmarks that in return allow observers to test progress against each target ( United Nations, 2015). For any village, city, region, or country, it therefore becomes straightforward to assess how fully a country has met each goal.

Measuring the SDGs: The SDG Index

Researchers, supported by two non-for-profit organizations, the Bertelsmann Stiftung and the sustainable development solutions network, used the 17 goals to construct an overarching measure of countries' SDG performance-the SDG index. This is the only index we have found that aggregates the overall SDG performance-while other publications exist that provide measures on the various aspects, such as the World Bank's SDG Atlas ( World Bank, 2017) or the SDG indicators of the UN's IAEG ( World Bank, 2017), Given the SDG targets, the research team identified available indicators to approximate the performance for each goal and then aggregated the performance across the 17 goals, giving them equal weight. In July 2016, they presented their initial results that quantify and rank the SDG achievements of all countries through their SDG index ( Sachs et al., 2016). This independently produced index scores each country's achievements regarding each of to the 17 goals, using readily available international indicators.

While there is no internationally comparable data for all 169 targets, the SDG index evaluates each goal with one to seven indicators that provide global coverage. While limited and not perfect, as the SDG index researchers proactively concede, they represent, as explained below, a reasonable attempt to quantify each country's performance on the SDGs.

An index has two dimensions: how each component is evaluated and how then the components are aggregated or weighed. The SDG index weighs all goals equally, which is an adequate reflection of the SDGs, since they do not suggest any hierarchy or preferences between the goals. Also, the SDG index's choices to quantify performance of each of the goals seems reasonable, possibly with the exception of goal 11 and goal 12, which could and probably should have more focus on aspects central to resource security.

Indicators within the SDG index can be split into three categories: (1) those that decrease people's resource dependence (e.g., activities that boost the availability of water, crops, or zero-carbon energy), (2) those that increase people's resource dependence. These are activities that require additional resource consumption in order to work (e.g., activities that provide human benefits but need to be powered by resources in order to function such as expanding hospitals or schools), and (3) those that neither increase or decrease resource dependence. These are activities that merely organize society differently but neither protect resources nor demand more of them (e.g., securing equal rights for women or increasing transparency of decision-making).

A rough analysis shows that in the current index, the first category makes up 13.6% of the weight of the index, the second one 67.6%, and the third one 18.8%. In other words, resource demanding aspects (category 2) outpace resource securing aspects (category 1) five to one. For instance, goal 13-climate action is measured through two lenses: carbon emissions per person and vulnerability to climate change. Carbon emissions correlates with income (a category 1 indicator), vulnerability negatively correlates with income since more affluent societies have more opportunities to reduce their infrastructure's exposure to climate calamities (a category 2 indicator). As a result, the two measures largely neutralize each other in the index. Table 1 summarizes the indicators relevant to resource security (category 1).

Table 1. Our analysis of the sustainable development goal (SDG) index's sensitivity to the resource security (or sustainability) dimension of the metric.

If the index was more sensitive to resource security for goals 11 and 12 (as it probably should), resource security relevant indicators (category 1) would represent 19.5% of the weight. This assumes that at least half of the indicators for goals 11 and 12 would be measuring resource security, adding 5.9% to the 13.6% (=19.5%). This improvement in the index would reduce the weight of the resource demanding indicators to 61.7% (category 2). This reweighing would slightly improve the ratio between the two categories from 5 to 1 and 3.2 to 1 and most likely not change the argument presented below.

Evaluating the Performance of the SDGs on Sustainability

To evaluate the consistency of the SDGs with sustainable development outcome, countries' rankings on the SDG index are marked in a diagram (Figure 1) that plots countries according to their development achievements (using the UN's human development index) on the horizontal and their resource use (using Global Footprint Network's Ecological Footprint) on the vertical. By identifying nations' position according to their development status and resource demand, countries' situation can be compared to the necessary conditions for global sustainable development. These conditions, marked as the global sustainable development quadrant, are an HDI over 0.7 for "high" (or 0.8 for "very high") development, and less than what is available globally to make the Footprint replicable globally. This threshold could be 1.7 global hectares because this is the amount of biocapacity available per person in the world ( Wackernagel et al., 2002; Global Footprint Network, 2017). It amounts to all the biologically productive land and sea areas divided by the number of people on the planet. A global hectare, used for both measuring Footprints and biocapacity, are biologically productive hectares with world average productivity. The threshold for the Footprint would need to be even lower in order to also support wild species, for instance 0.85 global hectares per person if we followed E.O. Wilson's suggestion of leaving half the biocapacity wild ( Wilson, 2016).

Figure 1. Ecological Footprint per person and HDI by country indicate how close each country is to basic global sustainable development criteria (high human development, within resource requirements that are globally replicable). Each number indicates the country's ranking on the sustainable development goal (SDG) index (only top and bottom 10 are marked here).

The diagram in Figure 1 reveals that the top 10 countries of the SDG index are far distant from the global sustainable development quadrant in the bottom right; the bottom 10 countries have a low Footprint and low HDI. To put it in statistical terms, if SDG achievement was uncorrelated with each country's level of resource demand, the likelihood of 19 out of the top 20 ranking countries in the SDG index having a Footprint of over 5 gha per person would be less than 1/5,000th of a billionth. (The under-5-gha-Footprint exception among the top 20 countries is the UK with a Footprint of 4.9 gha per person. Also note that the UK, according to the 2017 National Footprint Accounts edition, had a Footprint of 5.1 gha per person in 2013.) The probability of 19 out of 20 being high Footprint countries can be assessed with the following calculation: Given that 36 countries out of the 149 have a Footprint of 5 gha per person or larger, the likelihood of picking 19 out of 20 times a high Footprint country, if picked randomly, would be approximately 36!/16! × 129!/149! × 21 = 1/5,000th of a billionth. This is based on the assumption that the probability for the correct first pick is 36/149, for the second 35/148, for the third 34/147, etc. Also, since one pick can be wrong among the 20 draws, this increases the probability nearly 21 fold.

In other words, the link between high Footprints and high SDG index ranks is unlikely a coincidence. Also note that the Ecological Footprint of the index's top 20 ranking countries is so large that if all other countries consumed at the same rate, it would take the ecological capacity of over three planet Earths to materially support all of humanity. This level of demand on the planet is clearly not sustainable.

Given the world's current focus on carbon, one could make the same analysis based on carbon only. It would be less comprehensive because human economies demand far more from the planet than just carbon sequestration. However, the weakness of the SDGs to adequately address the resource dimension would reveal itself even starker as higher Footprint economies have also higher carbon portions of their Footprint ( United Nations, 2015). In other words, the analysis of carbon only would show an even stronger negative correlation between high performance on SDG index and low-carbon economies.

Conclusion: SDGs Must Strengthen Their Sustainability Side

This SDG index, in spite of its potential limitations, makes it possible to reveal a paradox humanity still needs to overcome: as shown in Figure 1, the SDG index rankings mimics the conventional development pattern that links higher development achievements with higher Footprints, rather than approaching the global sustainable development quadrant. This conventional development pattern is exactly what sustainable development endeavors to rectify.

The SDG index may still not be a fully mature representation of the UN's SDGs. The authors of the index acknowledge in their own report some of the index's limitations. But even a more complete SDG index will unlikely change the conclusions: the weight the SDGs give to development consideration, and the weak representation of the resource security aspect among the goals and targets will not significantly shift the results even of a more complete and carefully constructed SDG index. This near exclusion of resource security aspects ( AtKisson Group, 2016) makes the current SDGs fall short of actively advancing human wellbeing without further depleting the very natural capital on which development depends. In 2013, Dave Griggs from Monash University forewarned about the potential of the then emerging SDGs not to address adequately the need of "safeguarding Earth's life-support system, on which the welfare of current and future generations depends" ( Griggs, 2013).

The SDGs would be far more effective, if they were structured along the ultimate ends to ultimate means pyramid, recognizing the dependence of social outcomes on resource conditions ( Pinter et al., 2014). As a growing population and climate change increase pressure on natural resources, decreasing overall resource demand is crucial for being able to continue to fuel development achievements. Furthermore, higher demands of some countries reduce opportunities of others to access the necessary resources, exacerbating equity challenges.

Ignoring physical constraints imposed by planetary limits is anti-poor because with fewer resources to go around, the lowest-income people will lack the financial means to shield themselves from resource constraints, whether it is food-price shocks, weather calamities, or energy and water shortages. All the legitimate and important development gains the SDGs seek to achieve will fall tragically short without the natural capital to power the economy of each nation, region, city, or village. If we want to have a future, SDGs need to robustly embrace the reality of resource constraints and climate change. Also, we need robust accounting tools that track the outcomes. Without such rigorous metrics, there is great risk to misallocate development investments.

Author Contributions

MW drafted the first version. LH co-conceived the way how to compare the SDG index ranking with the HDI-Footprint approach. All three authors completed the manuscript. DL led the update and improvements of the National Footprint Accounts (2016 edition and 2017 edition).

Conflict of Interest Statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

The reviewer, FS, and handling editor declared their shared affiliation, and the handling editor states that the process nevertheless met the standards of a fair and objective review.

Funding

This work, including the maintenance of the National Footprint Accounts, was supported by the Barr Foundation and the MAVA Foundation. The researchers of this study have no competing financial interests.

Footnotes

References

Wackernagel, M., Schulz, N. B., Deumling, D., Linares, A. C., Jenkins, M., Kapos, V., et al. (2002). Tracking the ecological overshoot of the human economy. Proc. Natl. Acad. Sci. U.S.A. 99, 9266-9271. doi:10.1073/pnas.142033699

PubMed Abstract | CrossRef Full Text | Google Scholar

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Making the Sustainable Development Goals Consistent with Sustainability

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The UN's Sustainable Development Goals (SDGs) are the most significant global effort so far to advance global sustainable development. Bertelsmann Stiftung and the Sustainable Development Solutions Network (SDSN) released an SDG index to assess countries' average performance on SDGs.

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'Give us back our values': how to use human rights law in social work

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'Give us back our values': how to use human rights law in social work

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Earlier this year, former care minister Norman Lamb described the care received by people with learning disabilities as an abuse of human rights. His comments came during Seven Days of Action, a campaign led by families to shine a spotlight on the thousands of people with autism and learning difficulties currently detained in some form of in-patient setting.

One of those involved is Mark Neary, father of Steven Neary. Mark had to take legal action against his local authority back in 2011 when they refused to return his son home, after a brief stay in respite care turned into a year-long ordeal. At the British Institute of Human Rights we hear similar stories all too often - of services failing people with learning disabilities and their families.

Over the last threeyears, we have been working closely with social workers in a series of pilot schemes across England to discuss how they can use human rights to help deliver compassionate care. This is not just about reconnecting with social work values, but also training social workers to see how human rights frameworks can help with decision making and even change the culture of an organisation.

Values

The links between social work values and human rights might seem obvious, but rising caseloads and austerity pressures mean returning to human rights can, as one social worker involved in the project told an independent evaluator, "help, in difficult times, to give us back our values in a meaningful way".

Another social worker told the evaluator thatthey used human rights legislation in safeguarding meetings, "including the language of dignity and respect, to give a sharper, harder edge to our concerns around issues of neglect. It has helped us express our concerns as being relevant as a matter of law, something concrete."

Decision making

Using the Human Rights Act is not something for social workers to be afraid of, or to simply be passed on to lawyers. It can actually be a useful tool for practitioners. Empowering social workers about their duties under the Human Rights Act means they could use the law to help make (often difficult) frontline decisions.

Lisa, a senior dementia practitioner from Bristol, for example, told us: "I was able to challenge poor practice around planning the care pathway of a client using a human rights approach. The client's own wishes to live in her own home were not given appropriate weight and thinking about the range of human rights involved meant she was given a much more dignified, respectful way to be supported to live in her own home."

Another social worker reported that "service users are telling us they feel the benefit". Nina* was moved hundreds of miles away from her family when transitioning from adolescent mental health services to adult care, and the distress led her to self-harm. Nina's social worker and advocate worked together to negotiate with the clinical commissioning group, using her right to family life as protected by Article 8 of the Human Rights Act. Nina was transferred to a unit much closer to home.

Changing cultures

As social workers increase their knowledge of and confidence about human rights, this has the potential to transform their organisation. One social worker involved in the project reported that using a human rights approach "has improved the culture of our organisation. I started off sceptical about what difference the project would make, but there has been a big turn around and the service is better as a result."

As the external environment for social services becomes increasingly difficult, social workers tell us they feel more stretched but also feel a greater need to return to their values. Embedding human rights across social work can empower social workers with the knowledge and confidence they need to carry out vital work and ensure people like Steven Neary don't slip through the net again.

*Some names have been changed
Helen Wildbore is a senior human rights officer at the British Institute of Human Rights. BIHR has two projects exploring how human rights can improve mental health services, one working with practitioners and another with advocacy and support groups. Join the Social Care Network for comment, analysis and job opportunities, direct to your inbox. Follow us on Twitter (@GdnSocialCare) and like us on Facebook. If you have an idea for a blog, read our guidelines and email your pitch to us at socialcare@theguardian.com. If you're looking for a social care job or need to recruit staff, visit Guardian Jobs.

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social care network: adult social care hub

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'Give us back our values': how to use human rights law in social work

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Earlier this year, former care minister Norman Lamb described the care received by people with learning disabilities as an abuse of human rights. His comments came during Seven Days of Action, a campaign led by families to shine a spotlight on the thousands of people with autism and learning difficulties currently detained in some form of in-patient setting.

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In campus protests across the country, students took on the academic establishment for various reasons, including free speech and freedom to choose their curricula; and in street protests clear across the country, anti-Vietnam War activists took on the political establishment. In short order other rights revolutions followed - gay rights, disability rights, animal rights, you name it  the whole dynamic changing in less than a decade the balance of power between leaders and followers.
Instead of making our leaders more effective and ethical, it seems at least to have had the opposite effect - it seems to have made things worse.
Confucius was asked, "how does one qualify to govern?" The Master answered, "He who cultivates the five treasures and eschews the four evils is fit to govern." Next he was questioned, "What are the five treasures?" To this Confucius replied, "gentleman is generous without having to spend; he makes people work without having them groan; he has ambition but no rapacity; he has authority but no arrogance; he is stern but not fierce."

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From one of the pioneers in the field of leadership studies comes a provocative reassessment of how people lead in the digital age: in The End of Leadership, Barbara Kellerman reveals a new way of thinking about leadership-and followership-in the twenty-first century. Building off of ...

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Britain 'going backwards' on rights of disabled, says U.N. committee | Article [AMP] | Reuters

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Britain 'going backwards' on rights of disabled, says U.N. committee | Article [AMP] | Reuters

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GENEVA (Reuters) - The U.N. Committee on the rights of disabled people said on Thursday it had more concerns about Britain - due to funding cuts, restricted rights and an uncertain post-Brexit future - than any other country in its 10-year history.

The committee, which reviews states' compliance with the 2006 Convention on the Rights of Persons with Disabilities, published a 17-page report with recommendations about how Britain could do better.

"The UK is at the moment going backwards in accordance to the information that we have received," committee member Stig Langvad told a news conference in Geneva.

Britain said it was disappointed by the report. It said it did not reflect the evidence it had provided to the committee, nor did it recognise progress that had been made.

The U.N. committee's chairwoman Theresia Degener has described the situation in Britain as a "human catastrophe".

"The austerity measures that they have taken - they are affecting half a million people, each disabled person is losing between 2,000 and 3,000 pounds per year, people are pushed into work situations without being recognised as vulnerable, and the evidence that we had in front of us was just overwhelming," she said.

The most acute concern was the limitations on independent living.

"Persons with disabilities are in our view not able to choose where to live, with whom to live, and how to live," Langvad said.

Britain was also not fulfilling its commitment to allow inclusive education, and there was a high incidence of bullying at schools. A growing number of disabled people were living in poverty.

Budgets for local authorities had not only been slashed, but they were no longer ear-marked for disabled people, another committee member, Damjan Tatic, said.

Langvad said people with disabilities should be involved in preparations for Britain's Brexit talks with the European Union, to avoid losing protections that historically came from the EU.

"Persons with disabilities are afraid of the future since they do not know what is happening and since they do not feel that they are involved in the discussions on how to secure the rights of people with disabilities afterwards," he said.

Britain's government said it was a recognised world leader in disability rights, and almost 600,000 disabled people had moved into work in the last four years.

"We spend over 50 billion pounds a year to support disabled people and those with health conditions - more than ever before, and the second highest in the G7," a government spokesperson said.

Debbie Abrahams, the opposition Labour party's spokeswoman for Work and Pensions, said the "damning" report was a vindication of Labour's criticism of the government's policies.

"This confirms what Labour has been saying all along, that the lack of progress on all convention articles, including cruel changes to social security and the punitive sanctions regime, are causing real misery for sick and disabled people."

A Labour government would incorporate the convention fully into British law, she said in a statement.

(Reporting by Tom Miles, editing by Pritha Sarkar and Richard Balmforth)

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Britain 'going backwards' on rights of disabled, says U.N. committee

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GENEVA (Reuters) - The U.N. Committee on the rights of disabled people said on Thursday it had more concerns about Britain - due to funding cuts, restricted rights and an uncertain post-Brexit future - than any other country in its 10-year history.

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Self-identifying as disabled and developing pride in disability aid overall well-being | News and Research Communications | Oregon State University

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Self-identifying as disabled and developing pride in disability aid overall well-being | News and Research Communications | Oregon State University

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“The finding regarding stigma was a really powerful one,” Bogart said. “It supports the idea that the concept of disability is primarily a social construct, developed by society’s reaction to that impairment. It’s not just the physical impairment. It’s the way people treat you and the way society builds an environment that does or does not include you.”

The study results suggested that severe impairments lead to greater stigma, which increased the likelihood that people self-identified as disabled

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CORVALLIS, Ore. - Experiencing stigma, the severity of a disability and a person's age and income level help determine whether someone with an impairment considers themselves to be a person with a disability, and experiencing stigma predicts whether those individuals will ultimately develop disability pride, new research from Oregon State University shows.

"Roughly 15 percent of the world's population has some kind of disability but just a fraction of those people actually identify themselves as people with disabilities. Disability identity is a critical step in accepting a disability and helps to reduce the stigma surrounding the label," said Kathleen Bogart, an assistant professor of psychology in the College of Liberal Arts at Oregon State University.

Those who self-identify are also more likely to develop pride in their disability, a shift in thinking that can help build resilience and change public attitudes about the "disabled" label, said Bogart, an expert on ableism, or prejudice about disabilities, whose research focuses on the psychosocial implications of disabilities.

"The challenge with disability as a label is that it's so mired in stigma that people don't want that label," she said. "Can we reduce the stigma and reframe the label as a neutral label that is just useful as a category, like male or female? Or taking it even further, can we shift the label to the point where people have pride in that label?"

Bogart explored issues around disability self-identification and disability pride in two new studies published recently in the journal Rehabilitation Psychology.

The first study examined who is most likely to self-identify as disabled. For the study, about 700 people over age 18 completed an online survey that asked them to identify health conditions they had by checking boxes, or if their condition was not listed, filling in a box. Among the most common impairments were allergies, anxiety, depression, migraines, back injury or pain, attention-deficit/hyperactivity disorder, respiratory disease, hypertension and chronic pain.

Participants also were asked to rate characteristics of their health condition, such as whether it affects daily life, how often it causes physical pain and how often it is noticeable to other people. In addition, they completed a questionnaire about whether they experienced stigma and discrimination because of their condition. They were also asked whether they identify as a person with a disability. Only 12 percent of people with a health condition agreed or strongly agreed that they were a person with a disability.

The researchers found that experiencing stigma, along with severity of the impairment, were the biggest factors influencing whether someone with a disability identified that way.

"The finding regarding stigma was a really powerful one," Bogart said. "It supports the idea that the concept of disability is primarily a social construct, developed by society's reaction to that impairment. It's not just the physical impairment. It's the way people treat you and the way society builds an environment that does or does not include you."

The study results suggested that severe impairments lead to greater stigma, which increased the likelihood that people self-identified as disabled.

In the second study, the researchers looked further at the role disability pride plays in overall wellbeing for people with disabilities. Developing pride in the disability - and rejecting the stigma of society on whole - shows promise as a way to protect against stigma and build self-esteem, Bogart said.

"Little is known about the good things that might come with embracing a disability identity," Bogart said. "We believe developing pride may offer some protective effects for people with disabilities who experience stigma."

Using the same set of more than 700 survey participants from the previous study, but looking at additional questions, the researchers analyzed factors that influence whether someone has pride in their disability. They found that disability pride tended to be more prevalent among those who experience stigma, those who have strong social support and people of color. They also found that people experiencing greater stigma seemed to lead to more pride, and greater pride was associated with greater self-esteem.

"Disability pride is still a rare thing," Bogart said. "Most disabilities are invisible and people have to choose to identify with them. Many people hide their disabilities to avoid discrimination. But not identifying also perpetuates the stigma that disability is undesirable. Developing disability pride seems to protect self-esteem against the negative effects of stigma. It's a really valuable protection for people with disabilities.

"A logical next step for the research would be to develop interventions designed to boost disability pride among people with disabilities and at a policy level, with the goal of improving overall well-being and reducing stigma."

Social support within the disability community could be bolstered through social groups and mentoring. At a policy level, political activism, media representation featuring disability pride and disability pride events may support pride development.

Co-authors of the self-identification study are Adena Rottenstein of Eastern Michigan University; Emily M. Lund of Boston University; and Lauren Bouchard of Purdue University. Rottenstein and Lund are also co-authors on the pride study. The research was supported by a research grant from the OSU College of Liberal Arts.

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CORVALLIS, Ore. - Experiencing stigma, the severity of a disability and a person's age and income level help determine whether someone with an impairment considers themselves to be a person with a disability, and experiencing stigma predicts whether those individuals will ultimately develop disability pride, new research from Oregon State University shows.

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Tracy Lazard: "This is a damning verdict by the UN" #newsnight

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CEO of Inclusion London on concerns over how the Government treat disabled people living in the UK.

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UN panel criticises UK failure to uphold disabled people's rights | Society | The Guardian

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UN panel criticises UK failure to uphold disabled people's rights | Society | The Guardian

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The UK government is failing to uphold disabled people's rights across a range of areas from education, work and housing to health, transport and social security, a UN inquiry has found.

The UN committee on the Rights of Persons with Disabilities examined the government's progress in fulfilling its commitments to the UN convention on disabled people's rights, to which the UK has been a signatory since 2007.

Its report concludes that the UK has not done enough to ensure the convention - which enshrines the rights of disabled people to live independently, to work and to enjoy social protection without discrimination - is reflected in UK law and policy.

Although it praises some initiatives by the Scottish and Welsh governments to promote inclusion, it is scathing of the UK government's inconsistent and patchy approach to protecting disability rights and its failure to audit the impact of its austerity policies on disabled people.

It says ministers have failed to show that measures will be in place to protect disability rights when the UK leaves the European Union.

Charities and campaigners said the report was a "grim reality check" for ministers, while Labour said it highlighted how disabled people were bearing the brunt of Tory austerity policies.

Areas of concern highlighted by the report, which contains more than 60 recommendations for the UK government, include:

The rising numbers of disabled children educated in segregated "special schools" in the UK. The report calls for legislation to ensure mainstream schools provide "real inclusion" for disabled children.

High levels of poverty for disabled people and their families and reduced standards of living as result of multiple welfare reforms and benefit cuts. It calls for a review of benefit sanctions, which it says have a detrimental effect on recipients.

The failure of the UK government to recognise the rights of disabled people to live independently in the community. It calls on ministers to provide sufficient resources to support disabled people to live at home.

In November the same UN committee issued a scathing report on austerity policies pursued by the UK government in welfare and social care, which it described as "systematic violations" of the rights of people with disabilities. The government dismissed that report as patronising and offensive.

Kamran Mallick, the chief executive of Disability Rights UK, said: "The committee's final observations and comments represent a grim reality check for the UK government and its record on ensuring the human rights of disabled people."

Ellen Clifford, of the campaign group Disabled People Against Cuts, said the report showed the UK government was going backwards on disability rights. "It is utterly shameful that this should be happening in one of the richest nations in the world. We all now need to take a stance that enough is enough and demand that the government acknowledge reality," she said.

Debbie Abrahams MP, the shadow work and pensions secretary, said: "The UN committee has found that this Tory government is still failing sick and disabled people. Their damning report highlights what many disabled people already know to be true: that they are being forced to bear the brunt of failed Tory austerity policies."

A government spokesperson said: "We're disappointed that this report does not accurately reflect the evidence we gave to the UN, and fails to recognise all the progress we've made to empower disabled people in all aspects of their lives.

"We spend over £50bn a year to support disabled people and those with health conditions - more than ever before, and the second highest in the G7.

"We're committed to furthering rights and opportunities for all disabled people, which is why it is encouraging that almost 600,000 disabled people have moved into work in the UK over the last four years.

"We're also a recognised world leader in disability rights and equality, which is why we supported the development of the UN convention."

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UN panel criticises UK failure to uphold disabled people's rights

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The UK government is failing to uphold disabled people's rights across a range of areas from education, work and housing to health, transport and social security, a UN inquiry has found. The UN committee on the Rights of Persons with Disabilities examined the government's progress in fulfilling its commitments to the UN convention on disabled people's rights, to which the UK has been a signatory since 2007.

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Disabled People's Right To An Independent Life Being Eroded By Cuts, Equalities Commission Warns

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Disabled People's Right To An Independent Life Being Eroded By Cuts, Equalities Commission Warns

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Changes to benefits and care under austerity have led to the disabled being “increasingly marginalised and shut out of society”, the Equality and Human Rights Commission warns as a UN committee meets to evaluate Britain’s track record on their rights.

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Disabled People's Right To An Independent Life Being Eroded By Cuts, Equalities Commission Warns

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Last year, the same committee concluded that changes to social security had led to "grave and systematic violations" of disabled people's rights, blaming cuts to housing benefits, changes for the criteria for parts of the new Personal Independence Payment and the Independent Living Fund's closure.

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OHCHR | Committee on the Rights of Persons with Disabilities

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OHCHR | Committee on the Rights of Persons with Disabilities

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OHCHR | Committee on the Rights of Persons with Disabilities

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Connor Sparrowhawk mother attacks 'barbaric' treatment by tribunal | UK news | The Guardian

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Connor Sparrowhawk mother attacks 'barbaric' treatment by tribunal | UK news | The Guardian

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The mother of a vulnerable teenager who suffered a seizure and drowned in a bath at an NHS care unit has called for an overhaul of medical tribunals, saying she felt "retraumatised" after participating in a two-week hearing into her son's death.

Sara Ryan, whose son Connor Sparrowhawk died in 2013, demanded changes to the "barbaric" treatment of bereaved families at the Medical Practitioners Tribunal Service (MPTS).

"You're a grieved mother, you're stripped of any other identity and you're fair game for any kicking that comes your way and it must happen all the time," she said. "It's a terrible treatment of families in this setting. There needs to be change."

The tribunal in Manchester found that Dr Valerie Murphy, the lead clinician responsible for Connor's care, failed to carry out any risk assessments on the 18-year-old before he suffered an epileptic fit and drowned while taking an unsupervised bath. Murphy, who now works in Ireland, could face being struck off when the tribunal considers possible sanctions in November.

Connor, who was affectionately nicknamed Laughing Boy, had epilepsy, autism and learning difficulties and was admitted to Slade House, a care unit run by Southern Health NHS foundation trust, on 19 March 2013. He was found unresponsive in the bath less than four months later, on 4 July.

Connor's death led to the discovery that Southern Health had failed to properly investigate the deaths of more than 1,000 patients with learning disabilities or mental health problems over four years. The trust has accepted responsibility for Connor's death and will be prosecuted next month by the Health and Safety Executive.

Ryan, an Oxford University academic, said she was left distressed and unwell for days after being questioned by Murphy's defence barrister, Richard Partridge. She was visibly upset when taking the oath and was reduced to tears under questioning by Partridge, forcing a break in proceedings.

Ryan was repeatedly pressed on what she had told nurses about Connor when he was admitted to Slade House - with the implication, she said, that she should have told nurses her son needed to be supervised in the bath.

Partridge questioned Ryan about her description of Murphy in a witness statement as being "dismissive, arrogant and distant" and asked how she thought that would make his client feel.

He also raised an anonymous blog written by Ryan about Connor and his journey through the care system, which was seen to be critical of some nurses. He asked Ryan whether this blog "might have made people wary of you".

Ryan said: "I thought it was a barbaric process. It was totally unnecessary. The panel should have stepped in and stopped the questions by the barrister. I thought they were unpleasant, needly, they didn't contribute towards the allegations, they didn't shine any light on anything apart from trying to present me as shaky and unreliable."

Ryan, an academic researcher of autism and learning difficulties, said she felt offended by the tribunal's finding of fact which said "her memory may have been affected by the major trauma she experienced in the loss of her son". She said: "I found that so offensive given they sat through me being retraumatised for two hours. They don't seem to see people as human beings at all."

Partridge did not respond to a request for comment. A spokeswoman for the MPTS said: "We are sorry to hear how upsetting Dr Ryan found the process of giving evidence to the tribunal. The role of a witness is crucial in giving a tribunal a first-hand account of what has happened in a case, so they can establish whether a doctor is safe to practise. It's important that account is thoroughly explored and tested.

"However, we do understand that giving evidence can sometimes be distressing which is why we and the GMC offer a support service to all witnesses before they attend a tribunal."

An inquest jury in 2015 found that a number of serious failings by Southern Health NHS foundation trust contributed to Connor's death. The tribunal in Manchester heard that a plan had been drawn up that included observations of him to be carried out every 10 minutes because of his epilepsy.

A month before Connor died, a decision was made at a care plan hearing to cut observations to once an hour, even though he had recently bitten his tongue, which could have indicated a seizure.

Ryan said: "It's almost like if you're learning disabled the usual rules don't apply. Richard [Huggins, her husband] and I have always said we'd have been better off taking Connor to the McDonald's on Green Road roundabout, up the road from us, and leaving him there - he would have been looked after better. It is a terrible indictment of the NHS."

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Connor Sparrowhawk mother attacks 'barbaric' treatment by tribunal

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The mother of a vulnerable teenager who suffered a seizure and drowned in a bath at an NHS care unit has called for an overhaul of medical tribunals, saying she felt "retraumatised" after participating in a two-week hearing into her son's death.

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Five Ways Human Rights Help The Fight For Social Justice

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Five Ways Human Rights Help The Fight For Social Justice

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Social justice is defined as “justice in terms of the distribution of wealth, opportunities, and privileges within a society.” Often this is achieved through institutions or services that work to make sure people can equally access the benefits of social cooperation and guard against socio-economic inequality

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The 20th of February is World Day of Social Justice and in honour of this day, we look at five ways human rights can help to achieve social justice.
What is social justice?

Social justice is defined as "justice in terms of the distribution of wealth, opportunities, and privileges within a society." Often this is achieved through institutions or services that work to make sure people can equally access the benefits of social cooperation and guard against socio-economic inequality.

While social justice and human rights are two different concepts, they are closely linked. The 1948 Universal Declaration of Human Rights includes economic, social and cultural rights such as the right to health, security in the event of unemployment, and education. In 1966, these rights were brought into the International Covenant on Economic, Social and Cultural Rights (ICESCR), part of the International Bill of Human Rights. The UK is a signatory to the ICESCR. In 1993, the Vienna Declaration and Programme of Action highlighted that extreme " poverty inhibits the full and effective enjoyment of human rights."

In the UK, there are various domestic laws which aim to ensure that people enjoy equal opportunities and privileges within society, including the Human Rights Act 1998, which gives effect to the European Convention on Human Rights (ECHR).

How can human rights achieve social justice?

Social justice and human rights have a shared goal: human dignity, equally for all. The issues that make social justice difficult to achieve, such as poverty, exclusion and discrimination are in direct contradiction with human rights, which apply to all individuals indiscriminately.

Human rights can help to fight indignity. For example, the right to health should be secured for all as part of respecting human dignity. When a prisoner died from heroin withdrawal after being denied adequate health care, the European Court found that she had suffered degrading treatment in breach of her human rights.

Similarly, Protocol 2 to the ECHR says that no person shall be denied the right to education. The European Court of Human Rights has found that a child's rights were breached when he was suspended from school for refusing to accept corporal punishment.

In addition to promoting equality generally, human rights protect against direct and indirect discrimination based on certain characteristics. Article 14 of the ECHR ensures that no one may be discriminated against because of their sex, race, religion, political opinion, sexual orientation or nationality in exercising their rights.

In 1994, two members of the Royal Air Force were dismissed from their jobs for being gay. The European Court of Human Rights found that the armed forces' policy of excluding homosexuals could not be justified and the individuals' human rights had been violated.

The UK has a long and proud tradition of providing social support (a 'safety net') when citizens are unable to meet their basic needs by themselves. These systems include the NHS, housing support, and disability allowances. Maternity provisions are a clear example; if a woman becomes pregnant, which only women can do, would it be compatible with social justice for her to lose her job and income? No. And there are systems to protect mothers' employment rights in the UK.

Human rights are part of this safety net. When a family were re-housed, the accommodation which the state provided was not adapted for the needs of a disabled member of the family. This was a violation of her human right to family and private life.

Just last year, the UN Committee on Economic, Social and Cultural Rights (the body which tracks how states are putting the ICESCR into effect) criticised the UK's policy of using austerity measures that negatively impact the rights of disadvantaged and marginalised people.

Equal distribution of wealth is a cornerstone of social justice. RightsInfo has previously explored Why Human Rights Are Essential For Tackling Poverty. Equal sharing of wealth is enhanced through equal opportunity for employment.

Many laws protect workers. Health and safety standards, equal pay, working hour limitations, and the freedom to form and join trade unions are examples. With more people today living in conditions of slavery than ever before, laws protecting against labour exploitation, like the Modern Slavery Act 2015, are vital to achieve social justice.

Earlier this year, at the World Economic Forum, Prime Minister Theresa May recognised government's role in ensuring social justice:

[I]f you are someone who is just managing, just getting by, you don't need a government that will get out of the way. You need an active government that will step up and champion the things that matter to you.

Human rights provide a legal framework that allows individuals to hold government to account and requires the state to create conditions necessary for the achievement of social justice.
For more information:
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How Human Rights Help The Fight For Social Justice

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The 20th of February is World Day of Social Justice and in honour of this day, we look at five ways human rights can help to achieve social justice. Social justice is defined as "justice in terms of the distribution of wealth, opportunities, and privileges within a society."

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The UN Report into UK Government maltreatment of disabled people has been published – DPAC

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The UN Report into UK Government maltreatment of disabled people has been published – DPAC

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The long awaited report from the UN about our governments attacks on disabled people was published at 4pm today. You can read the full report here: http://www.ohchr.org/EN/HRBodies/CRPD/Pages/InquiryProcedure.aspx

#UK: Evidence of "grave or systematic violations of rights of people w/ disabilities" - UN Committee report https://t.co/S2MPIUYqLt @lizmt

- UN Human Rights (@UNHumanRights) November 7, 2016

We will have a lot more to say about this in future posts but for now here are the summary of findings of the report:

Summary of the findings

82. The facts submitted by the source were disputed by the State party. The Committee engaged in a verification exercise in which the facts that appeared to be controversial were cross-checked with data collected from a variety of sources, including parliamentary inquiries, reports of the independent monitoring body of the Convention, official statistics, reports and data originating from other government departments or units, entity governments, research institutes, service providers, academic centres, independent experts, former government officers, grass-roots non-governmental organizations, organizations of persons with disabilities and individuals. In some cases, some State party's statements were not supported by evidence collected by the investigation. In others, the State party indicated that no data were available. The findings below are based on a comprehensive analysis of data provided by various sources.

83. The State party launched, a considerable time ago, a major policy reform to the welfare system, aimed at reducing the fiscal deficit and achieving in 2020 a surplus in its balance of payments. Various policy documents and statements by high-level ranking officers have stated that this is the most fundamental policy change to the social protection system in recent decades. The stated goals of the policy are to transform British society from a low-wage, low-employment and high-welfare society to a high-wage, high-employment and low-welfare one. The policy makes the assumption that individuals are better off in work, dependency on benefits is in itself counterproductive and perpetuates poverty and beneficiaries of welfare benefits need to move into work both through improvement of incentives to employment and through a system of conditionality and sanctions. The policy intends that sectors of society who have been dependant on benefits move into work. It has also been stated that the policy aims at protecting those people who require more support or who are "most vulnerable".

84. Changes to the welfare system include the overhauling of a wide range of entitlements in several areas, including social and private housing sector, contributory and non-contributory benefits, tax credits and out-of-work and in-work benefits and have affected all segments of the population, including children, women, single parents, older persons and persons with disabilities. With regard to persons with disabilities, the reform resulted in the overhauling of major disability benefits, including means-tested benefits, income-maintenance benefits and benefits related to the specific and extra costs associated with disability. In the period covered by the inquiry, a large number of persons with disabilities have been requested to undergo capability assessments, with pre-implementation assumptions that a significant percentage would no longer rely on social allowances.

85. The roll out of those policies included the issuing of statements by high-ranking officers that the reform was aimed at making the welfare system fairer to taxpayers and more balanced and transparent and reducing benefit fraud. Persons with disabilities have been regularly portrayed negatively as being dependent or making a living out of benefits, committing fraud as benefit claimants, being lazy and putting a burden on taxpayers, who are paying "money for nothing". Although the State party produced evidence of formal efforts and public awareness campaigns to improve the image of persons with disabilities, the inquiry collected evidence that persons with disabilities continue to experience increasing hostility, aggressive behaviour and sometimes attacks to their personal integrity. The inquiry also found no substantiation of the alleged benefit fraud by persons with disabilities.

86. Public sector equality duty obliges State authorities to carry out impact assessments when they plan to introduce measures, including legislative measures, to ensure that groups with protected characteristics, among them persons with disabilities, are properly consulted and any adverse impact on them is properly justified. The State party submitted evidence that it has complied with domestic legal duties for all the intended changes to the welfare system. The inquiry collected evidence that a major piece of legislation of the welfare reform, the Welfare Reform Act 2012, was not thoroughly compliant with those requirements. Similarly, a court of law found that the decision to close the Independent Living Fund was not in compliance with domestic equality duty, which compelled the authorities of the State party to carry out another equality assessment. The inquiry also collected evidence that the views of persons with disabilities and their representative organizations who had participated in consultations launched by the State party, were not meaningfully taken into account in the decision-making and had little or no influence on policy decisions.

87. Although the State party asserted that a cumulative impact assessment of the various policy measures affecting persons with disabilities was not technically feasible or practicable, the evidence collected by the inquiry indicates that a cumulative impact assessment could have been conducted with the data and information available in the State party.

88. The Committee observes that various pieces of legislation related to recent welfare policies do not fully enforce the international human rights framework related to social protection and independent living. In connection thereto, it was observed that in the field of social protection, persons with disabilities have not been properly considered as right-holders and entitled to benefits with regard to their right to social protection. Similarly, while the Care Act 2014 reflects the principles of well-being of persons with disabilities and underlines the objective of personalization of support packages, it fails to properly acknowledge the elements of autonomy and control and choice, which are intrinsic to the right to independent living as referred to in article 19 of the Convention.

89. The Committee observes the prevalence of the medical approach in assessment procedures for determining the eligibility of persons with disabilities to entitlements. The main assessment procedure for determining eligibility for out-of-work benefits resulted in persons with disabilities being classified as either unable to perform work-related activity, having limited capability to work or fit to work. The above-mentioned assessment failed to take in account the support persons with disabilities need to perform a job or the complex nature of some impairments and conditions, or reflect the human rights-based approach to disability.

90. The Committee observes that persons with disabilities who have undergone functional assessments aimed at determining their eligibility for social benefits felt that they were merely processed rather than being listened to or understood. The inquiry was informed that several measures have been adopted to make adjustments to procedures to improve service delivery, including the time frame for the assessment procedures, and ensure a better understanding of the diversity of persons with disability by assessors. The evidence collected from various sources indicates that the needs, views and personal history of persons with disabilities, and particularly those requiring high levels of support such as persons with intellectual and/or psychosocial disabilities, were not properly taken into account or given appropriate weight in the decisions affecting them.

91. The inquiry collected evidence indicating that information, advice and counselling provided to persons with disabilities about different steps in the assessment processes and decisions about their entitlements was limited, non-existent or not provided in accessible formats and languages. That was coupled with uncertainty about the outcomes of those processes triggering anxiety, psychological strain and financial hardship. The Committee also collected evidence about persons with disabilities whose mental health condition had severely deteriorated as a result of the aforementioned factors.

92. Evidence indicates that legal aid to challenge administrative decisions ending or curtailing their benefits before first-tier tribunals has been restricted. Legal aid for cases before those tribunals has also been curtailed. Similarly, access to review by an independent and impartial tribunal has been restricted by the introduction of mandatory reconsideration procedures before the same administrative entity that has ruled on benefits.

93. Evidence indicates that State party authorities carried out surveys and regularly published statistics about welfare reform. States party authorities also cooperated with parliamentary inquiries and provided answers to the recommendations issued by that oversight body. However, there is no evidence of periodic monitoring and evaluation activities involving persons with disabilities and their representative organizations about the impact of the implementation of measures.

94. Evidence was produced about mitigating measures put in place by central authorities to support persons with disabilities in coping with the curtailing of their social security benefits. Evidence was also produced indicating that those mitigating measures were of a temporary nature for individuals concerned by the measures, not regularly offered or known by claimants affected by decisions and not sustainable enough to outweigh the financial impact of the reduction or suppression of income-maintenance benefits. The Committee also observes that the devolved administrations in Scotland and Wales had put in place mitigation measures and takes note of the mitigation plan agreed upon in Northern Ireland.

B. Living independently and being included in the community (art. 19)

95. The Committee observed throughout the inquiry process that the interaction of various reforms on welfare schemes, in particular changes in housing benefits, the establishment of a cap on household benefits, changes in eligibility criteria for the "moving around" component under the new Personal Independence Payment, tightening of criteria to access social care and the closure of the Independent Living Fund in the State party, have disproportionately affected persons with disabilities and hindered various aspects of their right to live independently and be included in the community.

96. The Committee is concerned that the set of reforms has limited the right of persons with disabilities to choose their residence on an equal basis with others, resulting in persons experiencing increasing reliance on family and/or kinship carers, reduction in their social interaction, increased isolation and, in certain cases, institutionalization. The deinstitutionalization process in the State party has been adversely affected.

97. The Committee is of the view that changes in housing benefits, specifically the implementation of the social housing size criteria through the reduction in social housing welfare payments referred to as "the spare room subsidy", the establishment of a cap on household benefits and changes in local housing allowances for private-sector tenants have curtailed the right of persons with disabilities to choose a place of residence in accordance with article 19 of the Convention. The Committee notes that, in multiple cases, social housing size criteria failed to recognize the specific living arrangements that persons with disabilities require in connection with their impairment and respect of their autonomy, will and preferences. The Committee observes that measures have caused financial hardship to persons with disabilities resulting in, inter alia, arrears, debts, evictions and cuts to essentials such as housing and food. The Committee, while noting that Discretionary Housing Payments have been established as a form of mitigation, observes that the concerns and views of the Special Rapporteur on adequate housing as a component of the right to an adequate standard of living, and on the right to non-discrimination in this context (see A/HRC/25/54/Add.2) persist.

98. Evidence indicates that persons with disabilities affected by cuts in their housing benefits have undergone high levels of stress, anxiety and depression as a consequence of the shortfalls in their budget and the costs to recover financial stability. In many cases, the implementation of welfare measures has reinforced the dependency of persons with disabilities on informal and/or family care and has hindered deinstitutionalization plans.

99. The Independent Living Fund in the State party has been closed to new claimants since 2010 and was definitively closed in June 2015. The funds transferred from the central administration to local authorities under the scheme of localization were not ring-fenced in England, affecting the majority of former Fund users. It was observed that social care packages have been reduced in the context of further budgetary constraints at the local level. The Committee finds that former Fund claimants have seen the support they received from local authorities substantially reduced, to the extent that their essential needs in areas such as daily personal care are not sufficiently covered. The Committee takes note of the decision made by the devolved administrations in Scotland and Northern Ireland for the maintenance of schemes equivalent to the former Independent Living Fund, as well as in Wales. However, it remains concerned about the lack of acceptance of new applicants to the fund in Northern Ireland.

100. According to the Care Act 2014, social care provisions and schemes realize the principle of well-being. However, the information brought to the attention of the Committee demonstrated increasing financial hardship for persons with disabilities at the local level and the reduction in time and quality of social care services for those persons who are considered "not having substantial or critical levels of need". Prioritization and tightening of eligibility criteria for adult social care has been implemented on a regular basis, adversely affecting persons with disabilities who are not being supported to the extent that they need. The Committee gathered evidence indicating that the level of care has diminished, affecting older persons with disabilities, and received testimonies about the reduction in time for visits by social carers, who in certain cases are limited to 15-minute visits to assist persons with disabilities with basic needs such as meals and personal hygiene. It was observed that the reduction in the provision of support services at the local level has curtailed the ability of persons with disabilities to take part in community life.

101. The State party provided information about measures to transfer more responsibilities to local authorities and the personalization of budgets for personal care. The Committee, however, received evidence that personal care packages have been reduced and that the availability of support is established on the basis of what is considered to be an affordable service in the market, rather than on the specific needs of the person concerned. The Committee received evidence that personal budgets do not necessarily allow persons with disabilities to have access and control over social care services and restrict the level of personal assistance they receive.

C. Work and employment (art. 27)

102. Evidence indicates several flaws in the processes related to the Employment and Support Allowance. In particular, the Committee notes that, despite several adjustments made to the Work Capability Assessment, the assessment has continued to be focused on a functional evaluation of skills and capabilities, and puts aside personal circumstances and needs, and barriers faced by persons with disabilities to return to employment, particularly those of persons with intellectual and/or psychosocial disabilities. In the initial period covered by the present report, evidence indicates a significant percentage of assessments were overturned by tribunals.

103. Despite the training delivered to assessors and decision makers, evidence indicates a persisting lack of awareness and limited knowledge of disability rights and the specific needs of persons with disabilities, particularly of persons with intellectual and/or psychosocial disabilities. The Committee also collected evidence of lack of reasonable accommodation and inaccessible information about the assessment process.

104. While the Committee notes the effort of the authorities to shorten the length of mandatory reconsideration procedures, evidence indicates that claimants requesting reconsideration have frequently experienced long waiting periods. The Committee also observes that, during the mandatory reconsideration procedure, Employment and Support Allowance benefits are suspended.

105. Evidence collected points to significant hardship, including financial, material and psychological, experienced by persons with disabilities undergoing assessments. Persons who have been compelled to undergo a new assessment shortly after a first assessment have been particularly affected.

106. The number of sanctions of claimants in the Employment and Support Allowance work-related activity group has increased significantly between 2012 and 2014, and evidence indicates that they have been applied in a disproportionate manner. Opportunities to apply for hardship payments exist, but few people appear to have been informed thereof; the payments are also modest, discretionary, subject to strict access rules and of a temporary nature. Evidence indicates that claimants who have been sanctioned have faced financial hardship, including through becoming indebted, relying on the support of relatives or on food banks or having reduced essential services.

107. Various programmes have been designed to encourage persons with disabilities to move into paid employment. The two main programmes, the Work Programme and Job Centre Plus, where persons with disabilities were mostly referred, had no visible impact in decreasing unemployment among them. Persons with disabilities who have had access to other programmes that have been more successful have experienced reductions in the support provided to them, in some cases resulting in loss of employment. Evidence indicates that the Work Programme helped persons with disabilities back to work to a very limited extent and that persons with substantial support needs were left aside.

108. The situation of persons with disabilities deemed "fit to work" is not monitored as such. Those who have re-entered the system by claiming the Job Seeker's Allowance to support them until they find work face stringent levels of conditions and sanctions, which do not take into account the specific barriers they face. The Committee was informed that, in some cases, sanctions had led to financial hardship for persons with disabilities, and particularly persons with intellectual and/or psychosocial disabilities.

109. The State party initially stated that it did not monitor deaths that occurred after assessments. Evidence gathered during the inquiry indicated that, in 2012 and 2015, such information was released by the Department of Work and Pension following freedom of information requests. Additionally, information originated from official sources indicated that 33 deaths of claimants who died after being assessed were being examined. The State party claims that there is no causal link. The Committee is not aware of any attempts at objective, thorough, open and impartial investigation regarding those deaths by an independent body.

D. Adequate standard of living and social protection (art. 28)

110. The Committee had access to official statistics indicating that, overall, households with one or more persons with disabilities are more likely to have a relatively low income than households without persons with disabilities. The Committee was presented with evidence that changes operated in the welfare system had had a more negative impact on households with persons with disabilities, especially on those living on low income.

111. The Committee observes that equality impact assessments carried out by authorities for various welfare benefits did foresee that a large number of persons with disabilities would be affected by policy changes. The Committee also received evidence that the cumulative impact in the reduction of welfare benefits has led persons with disabilities to struggle to maintain minimum level of income, driving many into increased dependency on relatives and increased levels of indebtedness and resulting in an inability to manage the bare essentials and recourse to food banks.

112. The authorities foresaw that the transition from Disability Living Allowance to Personal Independence Payment would result in 620,000 fewer people receiving Personal Independence Payments and would represent a 20 per cent saving in expenditure. The eligibility criteria and the threshold for qualifying for Personal Independence Payments have been tightened, with the result that many claimants with moderate or lower levels of support have been excluded from the benefit. Similarly, the tightening of the eligibility criteria for the mobility component has resulted in Personal Independence Payments beneficiaries losing their entitlements to that component. Persons were reassessed based on functional criteria and evidence indicates that, despite assurances that the assessment period would be shortened, there were claimants experiencing long waiting periods. Information also indicates that the authorities intend to further reduce the support available to access assistive devices.

E. Systematic violations of the Convention

113. Consequently, the Committee considers that there is reliable evidence that the threshold of grave or systematic violations of the rights of persons with disabilities has been met in the State party. That conclusion is based on the following findings:

(a) The State party has implemented a policy aimed at reforming its welfare system and the reforms have been justified in the context of austerity measures to achieve fiscal and budgetary policy consolidation;

(b) The assumptions made under the policy include that: taxpayers need to be treated with fairness; large numbers of persons with disabilities have been relying and dependent on social benefits; persons are better off in work than on benefits; the dependency of persons with disabilities on benefits is in itself a disincentive to move them into employment; the number of persons with disabilities relying on social benefits were to be decreased; and tightening sanctions and conditionality of social benefits is a legitimate tool for incentivizing their moving into employment;

(c) The impact assessments conducted by the State party prior to the implementation of several measures of its welfare reform expressly foresaw an adverse impact on persons with disabilities;

(d) Several measures have disproportionally and adversely affected the rights of persons with disabilities;

(e) Measures resulting in reduction of support provided to meet the extra cost of disability, denial of reasonable accommodation in assessment procedures and realization of the right to employment have had a discriminatory effect on persons with disabilities;

(f) The core elements of the rights to independent living and being included in the community, an adequate standard of living and social protection and their right to employment have been affected: persons with disabilities affected by policy changes have had their freedom of choice and control over their daily activities restricted, the extra cost of disability has been set aside and income protection has been curtailed as a result of benefit cuts, while the expected policy goal of achieving decent and stable employment is far from being attained;

(g) There is evidence that a large number of persons with disabilities have been affected (e.g. 13,900 persons with disabilities have lost their Motability schemes and therefore their adapted cars, upon implementation of Personal Independence Payment up to February 2016; 492,180 had been placed in the Employment and Support Allowance work-related activity group by end of 2015; 41,792 Employment and Support Allowance work-related activity group sanctions were handed out up to March 2014);

(h) Evidence gathered nationally by the Parliament, the independent monitoring framework, universities and research institutes and centres and independent experts, has documented adverse and disproportionate effects of measures on persons with disabilities;

(i) The State party has not conducted a comprehensive human rights-based cumulative impact assessment even though reliable sources have indicated it is feasible;

(j) The State party continues its policy of reducing social benefits of persons with disabilities as reflected in the Welfare Reform and Work Act 2016.

114. The Committee recommends that the State party:

(a) Conduct a cumulative impact assessment of the measures adopted since 2010, referred to in the present report, on the rights to independent living and to be included in the community, social protection and employment of persons with disabilities. The State party should ensure that such assessment is rights-based and meaningfully involves persons with disabilities and their representative organizations;

(b) Ensure that any intended measure of the welfare reform is rights-based, upholds the human rights model of disability and does not disproportionately and/or adversely affect the rights of persons with disabilities to independent living, an adequate standard of living and employment. To prevent adverse consequences, the States party should carry out human rights-based cumulative impact assessments of the whole range of intended measures that would have an impact on the rights of persons with disabilities;

(c) Ensure that: any intended legislation and/or policy measure respects the core elements of the rights analysed in the present report; persons with disabilities retain their autonomy, choice and control over their place of residence and with whom they live; they receive appropriate and individualized support, including through personal assistance, and have access to community-based services on an equal basis with others; they have access to security social schemes that ensure income protection, including in relation to the extra cost of disability, that is compatible with an adequate standard of living and ensure their full inclusion and participation in society; and they have access and are supported in gaining employment in the open labour market on an equal basis with others;

(d) Ensure that public budgets take into account the rights of persons with disabilities, that sufficient budget allocations are made available to cover extra costs associated with living with a disability and that appropriate mitigation measures, with appropriate budget allocations, are in place for persons with disabilities affected by austerity measures;

(e) Introduce all adjustments necessary to make all information, communications, administrative and legal procedures in relation to social security entitlements, independent living schemes and employment/unemployment-related support services fully accessible to all persons with disabilities;

(f) Ensure access to justice, by providing appropriate legal advice and support, including through reasonable and procedural accommodation for persons with disabilities seeking redress and reparation for the alleged violation of their rights, as covered in the present report;

(g) Actively consult and engage with persons with disabilities through their representative organizations and give due consideration to their views in the design, implementation, monitoring and evaluation of any legislation, policy or programme action related to the rights addressed in the present report;

(h) Take appropriate measures to combat any negative and discriminatory stereotypes or prejudice against persons with disabilities in public and the media, including that dependency on benefits is in itself a disincentive of employment; implement broad mass media campaigns, in consultation with organizations representing persons with disabilities, particularly those affected by the welfare reform, to promote them as full rights holders, in accordance with the Convention; and adopt measures to address complaints of harassment and hate crime by persons with disabilities, promptly investigate those allegations, hold the perpetrators accountable and provide fair and appropriate compensation to victims;

(i) Ensure that, in the implementation of legislation, policies and programmes, special attention is paid to persons with disabilities living with a low income or in poverty and persons with disabilities at higher risk of exclusion, such as persons with intellectual, psychosocial or multiple disabilities and women, children and older persons with disabilities. Those measures should be put in place within contributive and non-contributive regimes;

(j) Set up a mechanism and a system of human rights-based indicators to permanently monitor the impact of the different policies and programmes relating to the access and enjoyment by persons with disabilities of the right to social protection and an adequate standard of living, the right to live independently and be included in the community and the right to work, in close consultation with persons with disabilities and their representative organizations in all regions and countries that constitute the State party;

(k) Respond to the present report within the time limit prescribed under the Optional Protocol, widely disseminate the Committee's findings and recommendations and provide appropriate follow-up to the recommendations of the present report, including during the consideration of the State party's initial report before the Committee.

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The UN Report into UK Government maltreatment of disabled people has been published

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The long awaited report from the UN about our governments attacks on disabled people was published at 4pm today.

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British government systematically violating the rights of the disabled, UN inquiry warns | The Independent

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British government systematically violating the rights of the disabled, UN inquiry warns | The Independent

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The Government's welfare reforms and austerity policies have led to "grave and systematic violations" of disabled people's rights, an inquiry by the United Nations found.

The UN Committee on the Rights of Persons with Disabilities dispatched investigators to London, Manchester, Birmingham, Cardiff, Edinburgh and Belfast in October last year.

They found that a string of legislation introduced since 2010 as part of welfare reforms and austerity policies had had a negative impact, including the Welfare Reform Act 2012, Care Act 2014, and Welfare Reform and Work Act 2016.

UK disability charities, which have long warned against the Government's approach to disability, said the UN findings confirmed that Tory policies are making life harder for disabled people. However, the Conservative minister in charge of the welfare system branded the committee's approach as "patronising and offensive".

The UN report warned that cuts and changes to disability support under the Conservative-led government had "hindered disabled people's right to live independently and be included in the community".

Disabled people were also routinely portrayed as being "dependent or making a living out of benefits, committing fraud as benefit claimants, being lazy or putting a burden on taxpayers", the report found.

Other policies such as the bedroom tax and benefit sanctions had also disproportionately affected the disabled, while work schemes had "no visible impact" in helping disabled people find work and were sometimes counterproductive.

The report comes as former Work and Pensions Secretary Iain Duncan Smith called on the Government to look at ending its freeze on working age benefits and more funding for Universal Credit.

Dan Scorer, head of policy at Mencap, a learning disability charity, warned that more policies in the pipeline would have similar effects.

"This report is further acknowledgement that cutting disabled people's benefits will only make life harder and isolate people further from inclusion in employment and wider society," he said.

"People with a learning disability face massive exclusion from the labour market, and have seen their benefits and funding for vital social care services reduced. With further cuts to Employment and Support Allowance being introduced in April, we urge the Government to use next week's backbench debate in Parliament as an opportunity to reconsider this cut."

Michelle Mitchell, chief executive of Multiple Sclerosis Society, said the report was "yet more evidence" to support changes to the way the Government dealt with disabled people.

Labour's shadow Work and Pensions Secretary Debbie Abraham said her party would take a different approach and that the report was "reliable evidence that shows this Tory government is responsible for grave violations of the rights of disabled people under its failing austerity plan".

However, Damian Green, the Work and Pensions Secretary, said cuts to support for disabled people did not necessarily mean worse outcomes.

"The UN measures success as the amount of money poured into the system, rather than the work and health outcomes for disabled people," he said.

"The UK is a recognised world leader in disabled rights and equality. Not only do we spend about £50bn a year to support sick and disabled people, but we also offer a wide range of tailored and effective support, which this report fails to recognise.

"Our work and health green paper marks a turning point in our action to confront the attitudes, prejudices and misunderstandings within the minds of employers and across wider society."

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British government systematically violating the rights of the disabled, UN inquiry warns

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The Government's welfare reforms and austerity policies have led to "grave and systematic violations" of disabled people's rights, an inquiry by the United Nations found. The UN Committee on the Rights of Persons with Disabilities dispatched investigators to London, Manchester, Birmingham, Cardiff, Edinburgh and Belfast in October last year.

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UK austerity policies 'amount to violations of disabled people's rights'

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UK austerity policies 'amount to violations of disabled people's rights'

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Austerity policies introduced into welfare and social care by the UK government amount to "systematic violations" of the rights of people with disabilities, a UN inquiry has concluded.

It says a range of measures aimed at reducing public spending since 2010, including controversial changes such as the bedroom tax, and cuts to disability benefits and social care budgets have disproportionately and adversely affected disabled people.

The highly critical report, published in Geneva on Monday afternoon, says the rights of disabled people to live independently, to work, and achieve an adequate standard of living have been negatively affected by austerity measures.

It makes 11 recommendations, including calling on the UK government to carry out a study of the cumulative impact of all spending cuts on disabled people, and to ensure the human rights of disabled people are upheld.

The report was welcomed by disability campaigners. Linda Burnip, a founder of Disabled People Against Cuts (Dpac) said it "came as no surprise to anyone who has followed the stripping away of disabled people's rights over the last six years."

The UK government, however, rejected the UN report, saying in a formal response its findings presented an inaccurate picture of life for disabled people in the UK. "While the government continues to improve and build on the support available to disabled people, it stands by and is proud of its record."

The report is withering about the manner in which ministers have conducted welfare and social care reforms, arguing that they pushed ahead with changes even when they knew they would have an adverse impact on disabled people.

Cuts such as those to personal independence payments and the independent living fund had "hindered various aspects of [disabled people's] right to live independently", it says, making them more reliant on family and carers and in some instances forcing them into institutional care.

The bedroom tax and other cuts to housing support had led disproportionately to debt and eviction, it says. "Evidence indicates that persons with disabilities affected by cuts in their housing benefits have undergone high levels of stress anxiety and depression as a consequence of the shortfalls in their budget."

It is highly critical of what it calls the "functional assessments" of disabled people who have applied for social security benefits, noting that their experience tended to be one where they were "merely processed rather than being listened to or understood".

Government attempts to decrease the disproportionately high levels of unemployment among disabled people have had little impact, the report notes, while notorious "fit-for-work" tests were riven with flaws.

It noted that disabled people had suffered from a climate in which they were portrayed as "lazy and putting a burden on taxpayers". They had continued to experience "increasing hostility, aggressive behaviour and sometimes attacks to their personal integrity".

The report, issued by the committee on the rights of persons with disabilities, concludes: "There is reliable evidence that the threshold of grave or systematic violations of the rights of persons with disabilities has been met."

The inquiry was triggered after campaigners, including Dpac, made a formal complaint to the UN in 2012 about alleged violations of disabled people's rights. After two years of deliberations, the UN committee on the rights of persons with disabilities gave the green light to the inquiry in May 2014.

The inquiry report is based on an 11-day inquiry tour of the UK undertaken by two UN envoys in October 2015. The inquiry team met with more than 200 individuals, including officials and MPs as well as activists and academics.

The UK has been a signatory to the UN convention on the rights of people with disabilities since 2007. The convention includes the right to live independently, to work and to enjoy social protection without discrimination on the basis of disability.

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UK austerity policies 'amount to violations of disabled people's rights'

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Austerity policies introduced into welfare and social care by the UK government amount to "systematic violations" of the rights of people with disabilities, a UN inquiry has concluded. It says a range of measures aimed at reducing public spending since 2010, including controversial changes such as the bedroom tax, and cuts to disability benefits and social care budgets have disproportionately and adversely affected disabled people.

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Austerity policies a ‘human catastrophe’ » Disability Wales

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Austerity policies a ‘human catastrophe’ » Disability Wales

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Austerity policies a 'human catastrophe'

Austerity policies have created a "human catastrophe" - UN Committee Chair condemns the UK's record on human rights.

Deaf and Disabled People's Organisations welcome the public unity of the UN Committee on the Rights of Persons with Disabilities in their clear criticism of the UK Government's 'grave and systematic violations' of disabled people's human rights.

Chairperson Theresia Degener in her closing questions stated, "Evidence before us now and in our Inquiry procedure as published in our 2016 report reveals that social cut policies has led to human catastrophe in your country, totally neglecting the vulnerable situation people with disabilities find themselves in."
The Committee condemned the UK's attempts to misrepresent the impact of policies through unanswered questions, misused statistics and a smoke screen of statements on policies and legislation which fail to implement the rights of disabled people in reality.

Committee member Coomaraval Pyaneandee said "[I] Want to see you come back as a world leader which at the moment, I'm afraid you are not, but DPOs I congratulate. [They] are in fact, the world leaders in your country."

The UK Independent Mechanism further reinforced the concerns of DDPOs in their concluding statement which called for:

- Gaps and inconsistencies in disability discrimination legislation to be addressed including the legal basis for British Sign Language;
- Steps to be taken to embed the CRPD in domestic law, maintaining the protections in the Human Rights Act;
-A coordinated approach to implementing the Convention and the Committee's recommendations across the UK, with fully resourced and meaningful involvement of disabled people.

Tara Flood, Alliance for Inclusive Education and Reclaiming Our Futures Alliance said, "The UK's track record on article 24 is not acceptable. The Chairperson made it clear and unequivocal that inclusive education is not a choice, it is a right. We are not surprised but always disappointed by UK Government's lack of commitment to inclusive education for disabled children and their efforts to mask segregation."

Devolved Nations also had the opportunity to address questions put to them by the Committee.

Patrick Malone, Disability Action Northern Ireland said, "It is not acceptable for the UK Government to hide behind the lack of an Executive or Ministers in NI for the disparity of equality in legal protection for disabled people in Northern Ireland as compared to the rest of the UK. The Government must ensure that all of the disability provisions of the Equality Act 2010 are fully implemented in Northern Ireland as a matter of urgency."

Rhian Davies, Disability Wales said, "We welcome Welsh Government's commitment to a strengthened Framework for Action on Independent Living since much of the implementation of the UNCRPD is devolved to Welsh Government. However, as with the rest of the UK there is much more to be done in Wales in safeguarding disabled people's human rights. This has been a historical week for the disabled people's movement and one that we are proud to have played our part in."

Sally Witcher, Inclusion Scotland said, "We wholeheartedly welcome the Committee's comments on the UK. The government has not been allowed to get away with evasive responses which disregard the lived experiences of Deaf and Disabled people throughout the UK. We were disappointed that the opportunity was not available for Scottish Government to reply to all of the questions directed towards it, such as its plans to implement supported decision making for people with learning disabilities and how it will address the failings of the social care system. However, we anticipate opportunities to address these issues in response to the Committee's concluding observations."

Notes for Editors:
Deaf and Disabled People's Organisations across the UK have worked in coproduction to collect evidence and compile the reports and presentations through the Review process. The DDPOs submission was co-produced by Disability Rights UK, Inclusion Scotland, Disability Wales, Disability Action Northern Ireland, and the Reclaiming our Futures Alliance. Additional submissions with more information about the devolved nations were also submitted by DRUK / Disability Wales / ROFA; Inclusion Scotland; and Disability Action NI. The British Deaf Association also produced written submissions and formed part of the delegation.

The UN Committee on the Rights of Disabled People Examination assessed what steps the UK and devolved Governments have taken to implement the UN Convention on the Rights of Disabled People following ratification of it in 2009. The Committee is a body of experts, nominated and elected by governments, the majority of whom are disabled people. They will publish their Concluding Observations next week.

The committee postponed its assessment of the UK (originally due in 2015) to investigate a complaint of the violation of disabled people's rights as a result of welfare reform. This was brought under the optional protocol of the Convention. The findings expressed concern of grave and systemic violations of disabled people's human rights. That investigation looked only at a part of the UN Convention on the Rights of Disabled People - with a particular focus on the impact of austerity measures and welfare reform. The current review has investigated all of the Articles within the Convention.

A lay person's guide to the Review process and Examination can be found here: www.disabilitywales.org/crpd17

For media enquiries, please contact:

Natasha Hirst on 07825 211775 or Natasha.hirst@disabilitywales.org

Follow progress on social media:
#CRPD17

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Deaf and Disabled People's Organisations welcome the public unity of the UN Committee on the Rights of Persons with Disabilities in their clear criticism of the UK Government's 'grave and systematic violations' of disabled people's human rights.

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The disability pay gap explained - YouTube

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The disability pay gap explained - YouTube

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An animation from the Equality and Human Rights Commission explaining the disability pay gap. About the data: * The disability pay gap figures are based on a statistical predictive model which uses Labour Force Survey data from the period 1997 to 2014.

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Liz Sayce: ‘The UK thinks it is a leader in disability rights. But it has a long way to go’ | Mary O’Hara | Society | The Guardian

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Liz Sayce: ‘The UK thinks it is a leader in disability rights. But it has a long way to go’ | Mary O’Hara | Society | The Guardian

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n the quarter century that Liz Sayce, 63, has been an advocate for disability rights, she has witnessed momentous changes. But the former chief executive of Disability Rights UK (DRUK), who stepped down from the role earlier this summer, believes that the movement has reached a critical moment.

Related: 'A human right, not a bonus': readers on campaigning for disability rights

Next week a delegation from DRUK and other organisations is travelling to Geneva - and is expected to highlight concerns about the government's response to a UN committee's investigation into the upholding of the UN Convention on the Rights of Persons with Disabilities. Last year, the committee concluded that the government was guilty of "grave and systematic" violations of disabled people's rights under the convention, and made 11 recommendations for improvements. All were rejected by ministers. Sayce says this "unfortunate response" is discouraging.

She believes it is crucial that protecting and securing rights is a priority, during a time when people with disabilities have borne the brunt of austerity policies and disabled people's organisations have had to vociferously resist a vast array of cuts to benefits and social care. Initiatives such as the Work Programme, policies like the bedroom tax and benefits sanctions, moves to alter social care criteria so it is harder for people to access support, and the abolition of the Independent Living Fund for severely disabled people have made resistance essential, she adds.

A damning 2013 DRUK report called for the Work Programme to be scrapped for unemployed disabled people. "The culture of pressurising people to take up ineffective, one-size-fits-all programmes has failed disabled people," she says. She asserts that the wider goal of the disability rights movement, pushing for "equal participation" in society, needs to underpin actions. "We're not just saying [individual policies] are important. We're saying that belonging and participating in society are critical. They are human rights and they are crucial to human wellbeing." Sayce believes that being an organisation led largely by people with disability or long-term health conditions is central to DRUK achieving its objectives, including lobbying and influencing.

Earlier this year, the Equality and Human Rights Commission (EHRC) concluded that despite progress over the years, disabled people are still not treated as equal citizens. Its report outlined a litany of "missed opportunities and failures" across six key areas of life. These included gaps in educational attainment between disabled children and their non-disabled peers, and high rates of unemployment and poverty. This analysis came just months after the UN investigation.

All of this means "extreme inequalities" are exacerbated, says Sayce. It feeds into an unacceptable "othering" of disabled people, which in turn hinders further progress and contributes to a pattern of disability being couched in terms of vulnerability, rather than rights and "equal citizenship".

Having worked early on in psychiatric hospitals, Sayce says she "witnessed the way that institutionalisation and discrimination drastically curtailed people's rights to participate" and was always motivated to do something about it. Highlighting "burning social justice issues" affecting disabled people became the hallmark of her long career. Despite the low points - "seeing the clock turned back by successive governments" (she singles out the "erosion of independent living") - she is also keen to acknowledge advances along the way.

As policy director at Mind, she was on the frontline of lobbying in the lead up to the landmark Disability Discrimination Act (DDA) in 1995. "Remember that before that point it was completely legal to refuse somebody [entry] into a cafe because they were disabled, or to refuse somebody a job overtly. No law against it whatsoever."

Sayce stresses that proactive moves in the 1990s and 2000s helped to shift and shape the rights agenda. She cites the introduction of public sector equality duties in 2005 as one example. Absolutely pivotal, she says, is the degree to which progressive policies were, and continue to be, conceived and shaped by disabled people. Referring to developments such as personal budgets for social care, Sayce says: "It happened with independent living in the 90s and that's exactly how it should work."

Among the highlights of her career, she says, was being a director at the Disability Rights Commission (DRC) in the 2000s: "A time when disabled people and allies set and secured a new agenda; new rights ... and new enforcement", for example the recent supreme court case on access to public transport.

Her career has not been without controversy. In 2011 she headed a highly charged government review into disability employment, and described Remploy sheltered factories as "ghettos" that reinforced stigmas and were obstacles to inclusion in mainstream workplaces. Despite the government accepting all of her recommendations, and extending the access to work initiative to apprenticeships, she says there has been real backsliding.

"Government has continued to focus on influencing individuals to change their behaviour, rather than influencing the behaviour of employers to open up employment opportunities [to disabled people]. You can't just keep putting pressure on the individuals. You have to change the way employment works and the way [we] support individuals into work. What we want is policy across government - whether it is transport, social care, education or employment policy - that is all working to an agenda of full participation and independent living."

Sayce is not leaving the disability rights arena entirely (she's a member of the Healthwatch England Committee and the Social Security Advisory Committee and will continue to mentor) and eagerly awaits the outcome of the UN assessment later this year. She welcomes new disabled MPs including Marsha de Cordova and Jared O'Mara to parliament, and believes it will be critical for the government to demonstrate it can build trust with disabled people through an action plan (in response to the UN committee) with short- and long-term policies to achieve rights to full participation. "The UK has often thought of itself as a world leader in disability rights," she says. "Well, to earn that title it needs to be ahead of the game. It's got some way to go to demonstrate that."
Curriculum vitae
Age 63.

Lives Tooting, south London.

Family Civil partnership.

Education Oxford high school; University of Kent, English and French; University of London, MSc social work and social policy.

Career 2012-2017: chief executive, Disability Rights UK [following merger of Radar, National Centre for Independent Living and Disability Alliance]; 2007-12: chief executive, Radar; 2000-07: director, policy and communications, Disability Rights Commission; 1998-2000: director, Lambeth Southwark and Lewisham Health Action Zone; 1990-98: policy director, Mind; 1987-90: programme coordinator, research and development for Psychiatry (now Centre for Mental Health); 1985-87: good practices in mental health project worker, which included visiting Bexley hospital in south London and visiting people coming out of both Bexley and Cane Hill hospitals.

Public life Member, Healthwatch England Committee; member, Social Security Advisory Committee; OBE in 2008; honorary doctorate, University of Kent, 2014.

Interests Long evenings with friends, long-distance walking, social history - of movements for change, and London.

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equality and human rights commission (ehrc)

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Liz Sayce: 'The UK thinks it is a leader in disability rights. But it has a long way to go' | Mary O'Hara

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n the quarter century that Liz Sayce, 63, has been an advocate for disability rights, she has witnessed momentous changes. But the former chief executive of Disability Rights UK (DRUK), who stepped down from the role earlier this summer, believes that the movement has reached a critical moment.

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Sustainability and Ethnography in Business: Identifying Opportunity in Troubled Times

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Sustainability and Ethnography in Business: Identifying Opportunity in Troubled Times

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Sustainability—we’re hearing this word a lot these days, even in business (if not, depressingly, in Trump Tower). It’s probably something readers of this post all generally support, and it’s definitely something we’re all connected to in one way or another. Whether we work in tech, consumer goods, education, government, or any other field, it’s pretty easy to see how the products, services, and organizations we serve affect larger social and environmental issues.

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by MIKE YOUNGBLOOD, The Youngblood Group
Introduction to the Sustainability & Ethnography in Business Series, Mike Youngblood, Editor
Sustainability -we're hearing this word a lot these days, even in business (if not, depressingly, in Trump Tower). It's probably something readers of this post all generally support, and it's definitely something we're all connected to in one way or another. Whether we work in tech, consumer goods, education, government, or any other field, it's pretty easy to see how the products, services, and organizations we serve affect larger social and environmental issues.

For most of us in the EPIC community, however, sustainability isn't in our job descriptions. So how should we understand and act on this issue? What are our perspectives, capabilities, opportunities, and responsibilities with respect to sustainability? Are we actively addressing sustainability in our work, or is it properly "someone else's job?"

This post introduces an EPIC discussion on sustainability. Over the next few months we'll encourage and publish perspectives and stories from people excited about the challenges and opportunities of using our powers to promote sustainable ways of living and working. Our hope is to foster an ongoing conversation that includes not only those who have thought a lot about this subject, or who have a track record working on it, but also those who are relatively new to the idea or aspire to play a greater role.

The Meaning of Sustainability for the EPIC Community

Like everything cultural, the very idea of sustainability is complicated. For some of us practitioners, sustainability may mean fostering change that has enduring value for our stakeholders. For others, it may mean asking our stakeholders to make sacrifices for the common good. We might tend to see it as a business risk or opportunity, or as a social challenge, or as an environmental issue-or some combination of these.

Textbook definitions look something like this: "Sustainability is an approach to acting in the world in a way that consumes resources and produces waste at a rate that could be continued indefinitely."

Sustainability, in this sense, is about how we create, how we consume, and what happens to things when they're done doing what we designed them to do. It's about the cultures and behaviors that we promote, or sustain, or call into question in our work.

How much of what happens in our economies and our professional practice is truly sustainable? How do you define sustainability in your own work?

The Meaning of Sustainability for Others

The definition above is about as etic as it could be. In the thoughts and lives of our clients and research participants, sustainability has meanings that are more fluid and multivocal, more social and emotional. Countries, industries, communities, and even families may be split on how sustainability aligns with or challenges their values, worldviews, and ways of living.

The EPIC2013 paper by Dan Lockton and colleagues on energy use, for example, shows how the emic meaning of energy consumption is not about "using energy" per se but more about end goals and values like caring for family and creating a comfortable, welcoming home. At EPIC2011 Michael Donovan explored the meaning and values in the locavore food movement. He suggests that advocacy for sustainable food systems embodied in the movement is, for locavore adherents, only partially about sustainability and at least equally about frustration with the generic, impersonal experience of the mainstream food economy. Inspired by insights such as these we want to know: What do sustainability issues really feel like in people's lives? How could a thick description of sustainability and its interconnections with other aspects of culture help us identify constraints and opportunities to promote more sustainable practices?

And when we do this work, does objectivity and empathy for the cultural lives of others render us neutral on sustainability? One of many cultural truths overwhelmingly reinforced during the 2016 US presidential election cycle is that people on every side of every issue tend to be deeply ethnocentric about their own view of the world. As ethnographers, we try to overcome our own ethnocentricity by embracing the axiom of cultural relativity-but does relativity preclude us from actively taking a stand on critical issues like sustainability? Can we identify ways to validate and empathize with opposing perspectives and still find shared pathways forward?

Our Unique Position to Contribute to Sustainability

In the best ethnographic tradition, our community of practitioners is deeply reflexive-we scrutinize and question our own presence and effect in the work we do. How do our theory and our practice inform our self-perceptions of our work and who we are as a community? In their EPIC2009 paper, Treitler and Ramagosa pointed to a very real dilemma many of us face: although we come into this work with a desire to do good, our drive to innovate contributes to a proliferation of goods and services that's "difficult to manage for a healthy society and earth." It's quite true that, for many of us, our practice helps our clients churn out greater volumes of resource-burning products, services, and experiences. How can we reconcile this dilemma? How could our theory and our practice inform a less conflicted and more earth-conscious role for ethnographers in industry without turning our backs on important work that we love to do?

As ethnographers, we bring a nuanced understanding of culture into our work. We understand that culture is "made" rather than "natural," and we know that people's cultural lives are a complex whole rather than a random collection of isolated bits and pieces. These perspectives lead us to question norms, look for systemic patterns and connections, tack between the big picture and the fine details, and consider perspectives and challenges from multiple standpoints. In her 2016 contribution to Perspectives, Melea Press describes how our ethnographic perspective can help clients tell more powerful stories that make their sustainability initiatives resonate with diverse, often skeptical, stakeholders. How else can we apply our ways of thinking and doing to the issue of sustainability?

We have at least one more distinctive capability. We're fortunate that, due to the nature of our work, many of us have real influence over what actually happens in industry. We have trusted relationships with leaders in R&D, strategy, marketing, and other thought-leading disciplines-not only in big, established corporations that dominate their industries but also in nimble startups that inherently seek to redefine the ways things are done. How can we leverage our community's influence to promote sustainability through our work and the work of our clients?

Do you see other perspectives, skills, or influence we can bring to bear?

Examples We Can Learn From

We can probably agree that humanity's current pattern of consumption and waste production isn't viable. Something has to give.

For those of us watching for signs of change, we may be either encouraged or frustrated depending on our sense of urgency. In either case, we can see that there is actually a lot of good stuff happening. There are surprising alliances, such as Patagonia and Walmart teaming up in an effort create an industry-standard sustainable labeling system for apparel. As the Trump administration seems poised to dismantle existing government-led initiatives, and as market incentives in favor of sustainable practices seem to be increasing in some areas, industry-led initiatives like this may emerge as a key opportunity space for this work.

Many state and city governments are pursuing sustainable innovation in ways that deadlocked federal government hasn't. The city of San Francisco, for example, is one of several in the US actively taking a lead on transitioning city infrastructure to support electric vehicles while most of the US remains sluggish on this front.

And there are thoughtful initiatives to reexamine the systemic impact of a wide range of day-to-day practices in large organizations, such as the project described by J.A. English-Lueck and Miriam Lueck Avery at EPIC2014 assessing the impact that employee meal benefits at giant companies like Google have on the larger food system.

What else do we see happening in the vanguard of sustainability theory and practice within industry or among consumers? Can you share some other stories and examples of things you find exciting and inspiring? Can you tell us about your aspirations for how sustainability might be a bigger part of your organization or your work?

Providing Leadership in Sustainable Design

There is much that we in the EPIC community understand about the world but, alas, a great deal of our insight is either cloistered in academia or locked up in the proprietary vaults of our clients. Now more than ever, there is a pressing need for anthropologists to speak to a wider audience and share what we know. This is especially critical as we watch so many affronts to sustainability become normalized in media and popular culture. This normalization pertains not only to our unsustainable, day-to-day personal practices as consumers and producers, but also massive, global-level threats such as climate change. Yes, sustainability may have been absent from the 2016 US presidential debates, but it's bound to be an increasingly hot topic in the months and years ahead. How will we contribute to the public conversation? How will we engage our organizations, clients, colleagues and other audiences on issues of sustainability?

Let's get the conversation going. We're eager to hear from colleagues both inside and outside the EPIC community. Would you like to contribute to the conversation? Do you know somebody else who should? Add your comments below or contact us to propose an article. Please let us know. In the meantime, watch for upcoming posts on this topic.

Articles in the Sustainability and Ethnography in Business Series

Navigating Relativism and Globalism in Sustainability, Caroline Turnbull

Place Making and Sustainability, Michael Donovan

Radical Design and Radical Sustainability, Thomas Wendt

References

Photo: "Thilafushi Kuni Gondu - God's dirty little secret" by Hani Amir (CC BY-ND 2.0) via flickr.

Donovan, Michael, 2011. The Luminosity of the Local. Ethnographic Praxis in Industry Conference Proceedings 2011, pp. 277-284.

English-Lueck, J.A. and Miriam Lueck Avery, 2014. Corporate Care Reimagined: Farms to Firms to Families. Ethnographic Praxis in Industry Conference Proceedings 2014, ISSN 1559-8918.

Lockton, Dan, Flora Bowden, Catherine Greene, Clare Brass, and Rama Gheerawo, 2013. People and Energy: A Design-led Approach to Understanding Everyday Energy Use Behaviour. Ethnographic Praxis in Industry Conference Proceedings 2013, pp. 348-362.

Press, Melea, 2016. Sustainability Initiatives Succeed with Good Storytelling. EPIC Perspectives, March 14, 2016.

Treitler, Inga and Frank Romagosa, 2009. Ethnographer Diasporas and Emergent Communities of Practice: The Place for a 21st Century Ethics in Business Ethnography Today. Ethnographic Praxis in Industry Conference Proceedings 2009, pp. 50-58.

Mike Youngblood is cultural anthropologist working at the intersection of human-centered design and social impact. His award winning book on political participation and social change in rural India, Cultivating Community, was published in 2016. mike@theyoungbloodgroup.com

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Sustainability and Ethnography in Business: Identifying Opportunity in Troubled Times - EPIC

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by MIKE YOUNGBLOOD, The Youngblood Group Introduction to the Sustainability & Ethnography in Business Series, Mike Youngblood, Editor Sustainability -we're hearing this word a lot these days, even in business (if not, depressingly, in Trump Tower). It's probably something readers of this post all generally support, and it's definitely something we're all connected to in one way or another.

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Sustainability Initiatives Succeed with Good Storytelling. M Press 2016.

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Sustainability Initiatives Succeed with Good Storytelling. M Press 2016.

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Frequently, organizations don’t properly articulate their sustainability goals, which complicates the search for useful, actionable insights. They also run into trouble by adopting sustainability initiatives without organizational buy-in – a quick way to make employees feel judged, disenfranchised and burdened. Even defining sustainability and translating it into actionable goals is difficult when there are multiple interested parties. The term sustainability is often used in a fast and loose manner, referring to anything from global warming and climate change to tyrannical dictators, poor working conditions in clothing factories, fair trade coffee and chocolate, or triple-paned windows and bamboo flooring. This confusion impedes companies’ attempts to figure out what sustainability has to do with them, or how they might begin their own efforts.

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by MELEA PRESS, Hanken School of Economics

At the recent climate talks in Paris, 195 countries adopted a universal climate deal for the first time ever, key parts of which are legally binding. This is a stunning success and highlights how urgently the world's nations, backed by their citizens and businesses, are seeking new ways to thrive while also addressing the challenges of climate change. As they strive to reach emissions targets over the next 15 years, organizations will also gradually realize that sustainability is no longer a trendy choice or moral imperative, but a reality in need of focused, persistent attention-and a good roadmap. Organizations must integrate sustainability into every strategic plan and action, yet few know how to turn the global goals of climate change mitigation into the kinds of activities they report to stakeholders.

At first, developing a sustainability plan may seem an easy task. There are numerous books and articles about the business case for sustainability, as well as inspirational memoirs, case studies, and articles claiming to jumpstart sustainability in your company. Most, however, are dominated by checklists, audits and sustainability reporting (eg, the Global Reporting Initiative). Of course these measurements must be addressed, but there is a long road that precedes measurement and reporting, and little guidance for how to travel it.

Frequently, organizations don't properly articulate their sustainability goals, which complicates the search for useful, actionable insights. They also run into trouble by adopting sustainability initiatives without organizational buy-in - a quick way to make employees feel judged, disenfranchised and burdened. Even defining sustainability and translating it into actionable goals is difficult when there are multiple interested parties. The term sustainability is often used in a fast and loose manner, referring to anything from global warming and climate change to tyrannical dictators, poor working conditions in clothing factories, fair trade coffee and chocolate, or triple-paned windows and bamboo flooring. This confusion impedes companies' attempts to figure out what sustainability has to do with them, or how they might begin their own efforts.

Sustainability is often connected to auditing and reporting. In practice, this means that sustainability initiatives trickle down as a series of tasks disconnected from the ideals driving them; ideals such as environmental improvement, worker health and safety across the supply chain, fairness and equity, and a desire to change the world for the better. Organizations need sustainability initiatives with benchmarks and achievements that are audited and reported. But how do you create a sustainability initiative that everyone wants to contribute to, one that can be embraced to the point where it is reflected throughout the organization?

Ethnographic research can help articulate and disperse sustainability agendas by identifying the origin stories that connect to organizational and individual values. In more market-y terms: a good story helps get the message out, across the organization and out to stakeholders, and ethnographers can help in its telling. From a sociocultural perspective, ethnographers know that stories aren't merely anecdotes or inspirational tag lines. Stories also articulate and maintain relationships between people, express ideas and values, and create the context for making sense of our activities, and ultimately our jobs.

Over the past several years my colleagues and I have collected and analyzed data from seven multinational companies to learn how each one develops and maintains its sustainability agendas, builds legitimacy for sustainability within the organization, extends that legitimacy to suppliers, and works with buyers. Because sustainability efforts often cross departments and involve people with a variety of titles, we interviewed organizational members from departments including supply chain, operations, corporate social responsibility, sales, and communication. We also interviewed across hierarchical positions ranging from coordinators, category managers and department heads to managing directors and members of the executive office.

When it comes to sustainability, each of these companies has a story and each has developed their story to align with the way they address sustainability. Smaller firms tend to have an origin story that everyone knows and can repeat, sometimes using the same turns of phrase. Larger firms have stories that tend to focus on sustainability as an integral part of the company, rather than something that had an origin. In these firms informants use catchy phrases to talk about sustainability and often refer to reports that are available on the company website. We found three common kinds of stories.

Stories of Passion and Initiative

The first type of story is the origin story that stems from one employee's passion for some element of sustainability. Protagonists in passion stories endure as sustainability mascots in these organizations, whether or not the real employee remains. The protagonist's initiative and dedication to ideals are held up as a driving force, and everyone is invited to be a part of that team-the one that steps up and gets things done.

For example, one company's origin story begins when police show up to question an employee about stealing computers. It turned out the employee had been taking paper, not computers, home to recycle. When colleagues asked why he was being questioned, he said that he was asked to stop recycling paper. Outraged and amused, several of them got together to discuss how to start a recycling program in the office, and sustainability efforts snowballed from there. This story is well known throughout the organization. People think it is funny and ridiculous and everyone wants to be the protagonist in the story.

These stories work to align employee behavior, and create an environment where everyone is invited to voice their passion for sustainability and to question the status quo. Passion stories act as a conduit for employees to connect with organizational values, and develop a shared understanding of the organization's sustainability goals. Strategic plans, and ultimately guidelines, are created from this point of commonality, giving them a greater chance for internal compliance and excitement, rather than resentment, around new operational realities. Such stories also sway buyers. Whether or not buyers/customers are concerned about product sustainability, the origin stories are a quick way to communicate where the organization stands and how far they are willing to go, in order to meet, exceed, and in many cases, create product and worker safety standards.

Ah-ha Stories

Ah-ha stories are stories of disclosure in which the company was caught off guard when questioned: not internally by employees, but externally by buyers, end consumers, NGOs or media groups. These stories highlight how unprepared the organization was to answer detailed questions about business practices, especially as they extended into their global supply chain. The epiphany that the organization must know details about product origins and business practices throughout the supply chain is repeated as the driving force behind the sustainability initiative. Employees are invited to adopt this stance of curiosity and questioning as their normal way of being.

For example, one company described their sustainability journey as starting with a phone call from a newspaper reporter to the marketing director, asking where certain products came from. When the marketing director asked purchasing, he found out they knew where some, but not all of these products came from. The reporter responded, "if you don't know, you don't care," which struck the marketing director deeply because he did care and he believed his company cared.

These stories highlight how many companies still operate: they have a lot of knowledge, and also a lot of black boxes. In a business environment where sustainability is an innovation driver and scandals around unsustainable products and practices regularly smear corporate reputation, these stories light a fire of fear. The fear is around organizational reputation, but often it is just as much around personal reputation by association-the fear of being a bad person out of ignorance, or doing something horrible because you did not pursue a line of questioning that no one in your organization had ever asked.

This particular company has taken this origin story and used it to motivate employees to ask questions and welcome feedback from outsiders (even in the form of public criticism), believing it can help them prepare for the future. The firm has developed purchasing guidelines and now helps suppliers understand and achieve their standards. This means working with suppliers in developing countries to improve the social and environmental situations where raw materials come from. This can mean creating training programs and establishing probationary periods where they spend time onsite. Working with factories includes understanding the capacity of the factories and not overtaxing them. In addition, it includes understanding that business always moves, so it pays to ask questions about current and potential products, and to open conversation with potential suppliers sooner rather than later. They welcome questions from their stakeholders (e.g., customers, buyers, NGOs, media), embracing the opportunity to have vulnerabilities revealed to them.

It's in Our DNA

Some larger companies have no origin story. Rather, the story presented is that sustainability "is in our DNA," and hence has no identifiable origin. Companies with these stories have several things in common. First, their sustainability initiatives tend to be top-down. The stories surrounding executive-level sustainability statements add dimension and nuance that help employees link the organization's sustainability goals with their personal values, and incorporate them into their own work.

"Our chairman...talks very openly about who we are, what kind of business we are, what matters, what is important...and there are some very subtle messages there that if you don't identify with who we are you shouldn't be here... there is a common set of values that is increasingly starting to come out in what we do and it almost creates...an intuitive sense of what the firm would want to do and very often senior people are always talking about what the firm wants to do and what is inline with the firm's view of things."

The struggle for these organizations is disseminating their goals and messages internally, and ensuring people feel included. As the above quote mentions, this is often accomplished by hiring to the "common set of values," by seeking employees who are already aligned with established organizational goals. Such new hires can more easily pick up on what "the firm's point of view" is, or more practically speaking, on how they can enact sustainability in their jobs.

Second, these companies emphasize delivering on their goals: "not only our financial goals but obviously also our social community and environmental goals." Often, their stories help build a connection to foundational values. For example, they may provide a link to early corporate commitments to ideals such as serving the community through volunteer efforts, and being at the forefront of innovation around efficiency.

Finally, stories in these organizations tend to focus on sustainability's benefits-for the bottom line, the ability to attract and keep talented employees, as a way to mitigate risks in global supply chains, and as a way to gain competitive advantage. Employees in these companies often refer the goals, audits and reports available on their websites to back up their claims.

While stories in these organizations try to close the gap between the executive vision and employee action, they can lack the emotional hook that the first two types of origin stories have; they can seem more like small anecdotes than passionate struggles. In addition, the tendency of these companies to rely on the audit model, rather than tell a story with an emotional hook and inciting declaration, presents an extra challenge when communicating their sustainability goals to stakeholders.

Bringing it Together

In presenting these three types of stories and their uses, my main goal is to advocate for the power of stories to build legitimacy for sustainability initiatives in organizations. While stakeholders may ask for and should receive audits and reports, these should not be delivered at the expense of stories. Successful sustainability initiatives work with the two in tandem-stories provide a platform for understanding why so much time, money and energy are going to measuring and reporting, and they provide a more personal, perhaps more believable kind of transparency (see Press and Arnould [2011] for a discussion of narrative transparency).

Stories are an effective, inclusive way to communicate the "what and why" around sustainability goals. They provide material about corporate values and expectations that employees can compare themselves against and incorporate into their own actions. Eventually, the stories help employees coalesce around sustainability goals, which allows firms to create sustainability policies to measure and enforce the goals. Stories are also used to communicate sustainability goals across the whole company, and to develop policies and plans for working with supply chain partners.

Crafting stories that connect with a variety of stakeholders requires someone who can understand a variety of perspectives and relationships and find ways to integrate them. This is yet another place where business and ethnography can work together for lasting results.

Reference

Press, Melea and Eric J. Arnould (2014), "Narrative Transparency," Journal of Marketing Management, Volume 30, Issue 13-14.

Melea Press, PhD is a research fellow at Hanken School of Economics and a marketing strategy consultant. Her research focus is marketing strategy innovation, market transformation and sustainability initiatives in supply chains. She has worked with small- and large-scale agricultural producers in the US and East Africa, examined issues surrounding women and market access in rural Bangladesh, looked at demand-side energy issues, and studied sustainability in MNCs. Her work has been published in peer reviewed journals including Journal of Marketing, Journal of Consumer Research, and Journal of Public Policy and Marketing.

Related

Concreting Sustainability: Renewing the Cement Industry through Sustainability Implementation, Laura E. Resendez De Lozano

People and Energy: A Design-led Approach to Understanding Everyday Energy Use Behavior, Dan Lockton et al.

Corporate Care Reimagined: Farms to Firms to Families, J.A. English-Lueck & Miriam Lueck Avery

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Sustainability Initiatives Succeed with Good Storytelling - EPIC

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by , Hanken School of Economics At the recent climate talks in Paris, 195 countries adopted a universal climate deal for the first time ever, key parts of which are legally binding.

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Davey v Oxfordshire CC: The tactics of austerityLucy Series / February 28, 2017

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Davey v Oxfordshire CC: The tactics of austerityLucy Series / February 28, 2017

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In (very) brief, Luke Davey is a disabled adult, who had been living in his own home with (more or less) 24 hour support from a team of personal assistants who had supported him for 18 years.  They were, to Davey, his ‘community’, his ‘family’ (some of them literally, as he employed his sister in law).  On Davey’s own assessment, his independence was central to his wellbeing, and this in turn relied upon his being supported by this team of PAs.  His package of care had been partially funded by the Independent Living Fund, which has now closed, and the local authority were responsible for funding all of his care.

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‘I want to ask you a little about your blog…’ – mydaftlife

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‘I want to ask you a little about your blog…’ – mydaftlife

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This blog has again loomed large. It did at LB's inquest and again this week at the ongoing GMC tribunal. Dr Murphy's respective barristers both presented it as a transgressive space/action that somehow underpinned or fed into what unfolded. It was a malign catalyst for something (I'm not sure what either barrister was trying to argue other than the blog damaged the relationship between some consultant psychiatrists and a patient's mother).

How social media 'feedback' is 'used' by health and social care is the subject of considerable research, some of which is happening in our research group. A colleague has been interviewing people who document their health experiences online to explore why they do so.

When I started writing the blog back in May 2011 'online patient feedback' was not a twinkle in my eye and possibly wasn't even a thing. I wanted to capture the funny stuff that happened in an online diary. I didn't expect it would be read beyond close family and friends (or even by them). In fact it became quite widely read and a few hundred people started to follow it. The fun focus sadly disappeared towards the end of 2012 and it became an account of trying and failing to get support for LB and subsequently the 107 days he spent in the unit.

This week the blog questions unfolded like this [RP is Dr Murphy's barrister] :

This was ground already thrashed out during LB's inquest nearly two years ago now [VM is Dr Murphy talking about a community psychiatrist].

A different view was presented by the Band 6 nurse during his evidence:

I was told a few years ago that a STATT staff member was warned about LB's imminent admittance four days before he was admitted. I thought this must somehow be wrong. I mean we didn't know the unit existed until the day we took him there. It was almost in the realm of Mulder and Scully terrain to think that discussions were going on, without us, about a specialist unit we were to find out about from a mate on March 19th.

This week it became apparent that Dr Murphy and other consultant psychiatrists had discussed LB's potential admittance to STATT (unrecorded discussion) in the weeks before it happened. I spoke with one of the consultants from back in the day earlier today and it turns out that my blog was known about before LB was admitted to STATT. My blog (and my aggression or forthright communication depending on where you sit) generated strong emotions, anxiety, irritation and distrust. There was, as JC said 'an irrational fear of the blog'.

Social media activity like this was unprecedented and no one who was bothered about it knew how to deal with it. Appeals were made to senior Oxfordshire County Council (OCC) levels to somehow close it down. These were robustly rebutted by a redacted person who, like JC above, suggested that it created an opportunity for engagement.

I appreciate the frank discussion which happened with no notice today. I was also shocked that consultants could be so discommoded by the blogging of a parent, that none of them were able to read, discuss or engage with what was being written in a constructive way. I'd been carefully documenting the complete lack of health and social care support for an increasingly anxious and unwell young man for three or four months by then, or possibly longer. This is remarkably similar to the Blog Briefing Sloven circulated the day after LB died in which concern focused solely on reputation and professional pride.

I wonder if my writing style somehow added to the fear and distrust. The irreverence and liberal swearing. If I had written a more conventional and 'polite' account would it have been better received? I suspect not given the consultant I spoke with denied actually reading it. This was irrational fear.

I'm baffled that not one of these consultants was able to speak to me about their concerns. (Interesting we could have an open discussion today... I assume the toxic mother label is finally shifting as Sloven failings are finally recognised.) I'm deeply horrified we were oblivious to this consternation about the blog when we admitted LB. As the GMC argued this morning, it was Dr Murphy's responsibility to talk to me about LB's treatment. It was also the duty of these consultants, surely, to share their concerns with me about my blog?

I suggested to the consultant that the extreme response at the time was generated by the lack of actual challenge to medics by patients or families who are too easily silenced in different ways. The blog created a space of challenge but instead of being used to improve practice, or even engage with and consider the limitations of practice, it was despised and I suspect had an impact on how LB was treated. The veneer of professionalism can be shown to be very thin when 'transgressional' activity takes place.

There is some irony that #JusticeforLB is now used in health and social care learning and teaching. The blog also created an unusual contemporaneous record of what happened. The power of the posts that reviled or worried staff before LB died formed part of the evidence at his inquest. The typically disempowered position family members occupy when their testimony is dismissed as 'anecdote' differed here. Lowly families aren't allowed the defence of 'I did it in my head' like Dr Murphy has used this week at the tribunal but I had written it down.

There is much to think about, discuss and chew over here in some ways. In other ways there ain't. Health and social care professionals should be engaging with patients and families in different ways, at different times and in different spaces. They should be encouraging comment and feedback. I hope our experience is already historical and within the ivory tower of unassailable medical practice medics are learning to be more humble and take public accounts of patient experiences as opportunities to better understand the consequences of their actions, or non-actions, and the interaction between the various individuals involved. These accounts should be treasured not vilified.

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'I want to ask you a little about your blog...'

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This blog has again loomed large. It did at LB's inquest and again this week at the ongoing GMC tribunal. Dr Murphy's respective barristers both presented it as a transgressive space/action that somehow underpinned or fed into what unfolded. It was a malign catalyst for something (I'm not sure what either barrister was trying to...

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Dis/ability and austerity: beyond work and slow death

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Dis/ability and austerity: beyond work and slow death

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Here are two thoughts. Firstly, why all this talk of austerity when we should be talking about poverty? In Britain the ‘bedroom tax’, the recent reduction of Disabled Student Allowance, and the reduction of numbers judged to be disabled (and therefore eligible to welfare benefits) put disabled people yet again amongst the poorest of the poor. If labour is slow death, living as a disabled person in 2014 might mean a quick one:

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Dis ability and austerity beyond work and slow death

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Disability images and the art of theorizing normalityTanya Titchkosky

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Disability images and the art of theorizing normalityTanya Titchkosky

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Even the slow-to-change Government of Canada has, in the last 30 years, shifted its words (its images): from the incapacitated, to the disabled, the handicap, to handicap people, people with challenges, to the now ever-popular (and often enforced) ‘people with disabilities’ (Canada 2003; Titchkosky 2003). One day, the Government might even entertain the suggestion by those in the disability rights movement that there is a good politics and pride in calling ourselves ‘disabled people.’

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Professions Allied to the Community (PACs) 

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Professions Allied to the Community (PACs) 

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'Perhaps I can be so bold as to suggest that it might only be disabled people who are ‘able to make the PAMs able’. We have learnt that the counter to the disabling restrictions kept alive by a narrow dependent attachment to medicine (as in the PAMs) lies in changing orientation and developing support systems that are responsive to self-defined aspirations in the community. Centres for Integrated Living (CILs) are one structure created by disabled people to service such aspirations and, in my view, workers in these centres are an embryonic Profession Allied to the Community (PAC). This professionalisation process exactly replicates the progress made by women when they created their own midwifery service rather than seeing themselves as woMEN (!) with support needs wholly defined by males. User generated support services create opportunities for harmonising user and provider needs and at the very least avoid falling into the trap of seeing disabled people as disABLED (!) with support needs wholly defined by people with abilities.'  P6

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Forget ‘the environment’: we need new words to convey life’s wonders | George Monbiot | Opinion | The Guardian

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Forget ‘the environment’: we need new words to convey life’s wonders | George Monbiot | Opinion | The Guardian

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f Moses had promised the Israelites a land flowing with mammary secretions and insect vomit, would they have followed him into Canaan? Though this means milk and honey, I doubt it would have inspired them.

Related: The word-hoard: Robert Macfarlane on rewilding our language of landscape

So why do we use such language to describe the natural wonders of the world? There are examples everywhere, but I will illustrate the problem with a few from the UK. On land, places in which nature is protected are called " sites of special scientific interest". At sea, they are labelled " no-take zones" or " reference areas ". Had you set out to estrange people from the living world, you could scarcely have done better.

Even the term "reserve" is cold and alienating - think of what we mean when we use that word about a person. "The environment" is just as bad: an empty word that creates no pictures in the mind. Wild animals and plants are described as "resources" or "stocks", as if they belong to us and their role is to serve us: a notion disastrously extended by the term "ecosystem services".

Our assaults on life and beauty are also sanitised and disguised by the words we use. When a species is obliterated by people, we use the term "extinction". It conveys no sense of our role in the extermination, and mixes up this eradication with the natural turnover of species. It's like calling murder "expiration". "Climate change" also confuses natural variation with the catastrophic disruption we cause: a confusion deliberately exploited by those who deny our role. (Even this neutral term has now been banned from use in the US Department of Agriculture.) I still see ecologists referring to "improved" pasture, meaning land from which all life has been erased other than a couple of plant species favoured for grazing or silage. We need a new vocabulary.

Words possess a remarkable power to shape our perceptions. The organisation Common Cause discusses a research project in which participants were asked to play a game. One group was told it was called the "Wall Street Game", while another was asked to play the "Community Game". It was the same game. But when it was called the Wall Street Game, the participants were consistently more selfish and more likely to betray the other players. There were similar differences between people performing a "consumer reaction study" and a "citizen reaction study": the questions were the same, but when people saw themselves as consumers, they were more likely to associate materialistic values with positive emotions.

Words encode values that are subconsciously triggered when we hear them. When certain phrases are repeated, they can shape and reinforce a worldview, making it hard for us to see an issue differently. Advertisers and spin doctors understand this all too well: they know that they can trigger certain responses by using certain language. But many of those who seek to defend the living planet seem impervious to this intelligence.

The catastrophic failure by ecologists to listen to what cognitive linguists and social psychologists have been telling them has led to the worst framing of all: "natural capital". This term informs us that nature is subordinate to the human economy, and loses its value when it cannot be measured by money. It leads almost inexorably to the claim made by the government agency Natural England: "The critical role of a properly functioning natural environment is delivering economic prosperity."

By framing the living world in this way, we bury the issues that money cannot measure. In England and Wales, according to a parliamentary report, the loss of soil "costs around £1bn per year". When we read such statements, we absorb the implicit suggestion that this loss could be redeemed by money. But the aggregate of £1bn lost this year, £1bn lost next year and so on is not a certain number of billions. It is the end of civilisation.

On Sunday evening, I went to see the beavers that have begun to repopulate the river Otter in Devon. I joined the people quietly processing up the bank to their lodge. The friend I walked with commented: "It's like a pilgrimage, isn't it?" When we arrived at the beaver lodge, we found a crowd standing in total silence under the trees. When first a kingfisher appeared, then a beaver, you could read the enchantment and delight in every face. Our awe of nature, and the silence we must observe when we watch wild animals, hints, I believe, at the origins of religion.

So why do those who seek to protect the living planet - and who were doubtless inspired to devote their lives to it through the same sense of wonder and reverence - so woefully fail to capture these values in the way they name the world?

Here are a few ideas. I hope, in the comments that follow this article, you can improve and add to them

Those who name it own it. The scientists who coined the term "sites of special scientific interest" were - doubtless unwittingly - staking a claim: this place is important because it is of interest to us. Those who describe the tiny fragments of seabed in which no commercial fishing is allowed as "reference areas" are telling us that the meaning and purpose of such places is as a scientific benchmark. Yes, they play that role. But to most people who dive there, they represent much more: miraculous refuges, thronged with creatures that thrill and astonish.

Rather than arrogating naming rights to themselves, professional ecologists should recruit poets and cognitive linguists and amateur nature lovers to help them find the words for what they cherish. Here are a few ideas. I hope, in the comments that follow this article online, you can improve and add to them.

If we called protected areas "places of natural wonder", we would not only speak to people's love of nature, but also establish an aspiration that conveys what they ought to be. Let's stop using the word environment, and use terms such as "living planet" and "natural world" instead, as they allow us to form a picture of what we are describing. Let's abandon the term climate change and start saying "climate breakdown". Instead of extinction, let's adopt the word promoted by the lawyer Polly Higgins: ecocide.

We are blessed with a wealth of nature and a wealth of language. Let us bring them together and use one to defend the other.

* George Monbiot is a Guardian columnist

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Forget 'the environment': we need new words to convey life's wonders | George Monbiot

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f Moses had promised the Israelites a land flowing with mammary secretions and insect vomit, would they have followed him into Canaan? Though this means milk and honey, I doubt it would have inspired them. Related: The word-hoard: Robert Macfarlane on rewilding our language of landscape So why do we use such language to describe the natural wonders of the world?

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We all want to be welcomed, to be invited in, to be included. How would you feel to be excluded from your life as you know it?

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I've not blogged in ages, 2017 has been a tricky year since my dad passed unexpectedly in December and though I do have a few blog ideas in the pipeline this topic has been bubbling about in my brain for a while and it seemed fitting to post on the anniversary of my accident - 27 years this year - whoop, whoop to me! I appreciate that for many people it might seem odd to celebrate a date on which an accident left me paralysed but in truth the alternative could have been much worse, it's a celebration of survival.

This time of year tends to be a period of reflection for me, looking back over life since my accident (a few other anniversary blogs in the archives), I've realised in recent years that I have spent a lot of energy making out that my life as a paraplegic is so much easier than it actually is, a mind set I developed very soon after my accident, a coping mechanism for myself but also a very effective way of swerving people's sympathy, I'm not good at dealing with sympathy, it makes me feel claustrophobic, and has the opposite of the intended effect, it makes issues seem so big as to be insurmountable; by minimising things I could swerve the icky sympathy and convince myself that paralysis was no biggie.

I minimised so many things, so much rejection, so many complications, but in minimising them I was also unconsciously minimising myself, my own achievements and accomplishments; I'll admit I can seem very confident but I actually have rather low self esteem, I don't feel like I've achieved nearly enough and I play down everything that I do and I now suspect the two may be intertwined. In minimising my injury I minimised me.

I was a teenager, I didn't want to be different, I didn't want to be forgotten, I didn't want to be thought of as an inconvenience, a burden, needy, dependent, weird, ugly, unsexy, boring, dull, a problem, a medical disorder. I didn't want to be left out or excluded, I wanted to be included. I didn't want to make a fuss, (ok, occasionally I do like a massive fuss but there's a time and a place) I developed what appeared to be a teflon skin, it was necessary in order to seemingly deflect with whatever inappropriate or hurtful comments strangers or sometimes even friends might make about my disability.

Here's an example of the kind of bullshit that regularly comes my way; strangers I've met in bars think it's perfectly acceptable to ask me incredibly personal questions, if I can have sex, can I have children and can I orgasm? (In case you're now wondering the same thing, yes, yes and yes.)

While I'm raising the topic of questions, let me just paint this scenario for you, guaranteed to happen on most nights out. I'm having a great time with friends, chatting to new people when curious Cathy or eager Eddie wants to ask me a question...

To be clear, I'm prepared to answer the question, it doesn't upset me at all but ask yourself, are you prepared for the answer because let's be honest, it's unlikely to be a happy story is it?

I've no qualms talking about my accident but f*ck me, timing people, it's a total buzz kill in the middle of a fun night out and you're likely to get all over emotional....

You ask, I answer, you go silent, your arse clenches, you maybe whisper 'fuck' or 'Jesus', the temperature around us drops about 10 degrees and you say how awful it is, I say 'nah it's fine, it was years ago, hey shit happens' anything to restore the mood to what it was 30 seconds ago and use my energy to undo the tension you created. You may also be crouching down at this point because you're keen to be at my eye level and boy are your ham strings feeling the burn, but now you're a bit worried about offending me by standing up and complaining that your legs hurt. So I say 'you don't have to crouch down there', yup me making you feel better again. You tell me about an injury or illness you suffered that left you paralysed for 2 weeks so you know how it feels. Excuse me? 2 weeks? Wow, yeah you totally get it, those 2 weeks must have been so similar to twenty seven years. Then, if I'm really lucky you'll let me know that medical science is making great strides, um yeah but not for a 27 year old spinal cord injury. Again, there I go minimising, minimising my experience, this time to make you feel better.

There is also the example of the instances when I minimised to make myself feel better, usually during an encounter with the delightful f*ckwits who respond by telling my that I'm an inspiration because if it had happened to them it would be so unbearable that they would probably kill themselves. I used to assure these arseholes that it really wasn't all that bad, so much more to life, etc, etc. All of which is completely true but what angers me is that I continued to give them my time and energy, if you think so little of life that you couldn't cope with life sitting down then maybe you need to reassess your priorities; whatever, it's your issue, not mine and I shan't be expending any more energy trying to convince you otherwise.

I cannot believe how many times have responded with 'shit happens', to 'it could be worse' playing down my life experience like it's no big deal. Problem was over the years I believed it too. I thought of it as a blip, a curveball, a detour. Years before social media i was effectively filtering my experience, photoshopping some things out, flaunting the good stuff, (yes despite the nature of this post my life has largely been very good stuff).

I never saw it as a life changing accident that changed the course of my life. That was far too big to contemplate. It was so much easier to fit in, always smile, never complain, never explain, go to all sorts of lengths to be easy, breezy cover girl, make sure everyone around me didn't have to think about it more than necessary. Then I didn't need to think about the serious injury that happened to me, that changed my life, the life of that young, happy 14 year old girl girl. A child. A child who became an adult over night. It was so much easier to diminish its impact than feel it, to feel for the loss of potential of that teenage girl. Her potential. My potential.

I hope this isn't coming across as angry or self pitying disabled woman with a rotting chip on her exceedingly muscular shoulders, that's not where I'm coming from, I don't carry this around like a cross on my back, I just thought it was time to 'lift the veil' or turn the filter off. It was only after I broke my leg in 2015 and ended up on bed rest again that I truly began to acknowledge what a huge thing had happened to me 25 years earlier.

As much as I try not to let my disability dictate my life it does inform some of my decisions and life choices. I fought so hard to be included but I've also had to accept there have been many times in life when my disability has made that impossible and I have to accept exclusion. I've very rarely been in friend's homes as so many are upstairs or downstairs, it could just be they think I'm an unsocial oddball and no one wants me over but I hope it's the stairs. Events that I have missed because there no wheelchair access and it wasn't feasible to navigate the stairs, birthday or engagement parties where I just couldn't face the slog upstairs or being dependent on the kindness of bouncers so I feigned illness or conflicting plans. I love a rooftop view but I very rarely get to go up on rooftops whether in bars, hotels or friend's houses, there is no access, though huge props to the chauffeur in Paris who carried me to the very top of the Eiffel Tower many years ago. And a big bonjour to the 3 exceedingly fit firemen who carried me up a moving escalator out of the Louvre last weekend.

Here are a few questions for you to ponder...

How many wheelchair users do you see on your rush hour commute? Think about it, you're on the packed 7.14am to Waterloo or Liverpool St, where's the wheelchair squeezing in?

How many disabled people work in your organisation?

How many disabled friends do you have in your social circle (aside from me)?

How many disabled children are in your child's school or play groups? Have you invited them over for a play date or a birthday party?

You're away with friends at a luxury hotel or a spa, how many times have you seen a pool hoist?

Independent retailers, coffee shops, restaurants, bars, I want to support you but is your premises accessible, you support me and I'll support you.

Is your feminist project inclusive and considerate of women with disabilities?

How often have you parked in a disabled bay or used a disabled loo under the rationale that you'll only be a few minutes? The few minutes that I really need it before a meeting, a job interview, an audition, a flight, a train. FFS.

How many on screen portrayals of disabled people have you seen that you believe are an accurate representation of living with a disability.

Can you name 5 famous people with a disability who are not Paralympic athletes?

How many disabled people have you seen at your local gym, yoga or pilates class?

Have you considered what it's like to have difficulty having privacy, struggling to find solitude with nature in a beautiful place because it's so damn inaccessible you need help to get there but then can't just chill with your own thoughts because you have a companion in tow to heave your arse up a hill.

No matter what your answers are I'm not being judgmental I just wanted to give a pause for thought, to consider inclusion vs exclusion.

I used to book dinners and parties in utterly inaccessible venues because they were hip or cool (eurgh) but haven't for some time, your business is not getting my money if you can't squeeze in a disabled toilet and keep it clear. (A big thanks to the companies I've worked for who have supported this when organising team events.) I would get carried up and down stairs to be at all the best parties in fear of missing out but no more, if it's not accessible there better be magic money tree at the top of those stairs. That or Liam Neeson and Idris Elba waiting for me with an ice cold margarita.

When I moved to LA I had to work hard at making new friends, that's no mean feat as an adult, to find your clique, there's a lot of trial and error, lots of forcing yourself out to meet new people, now imagine doing it all in a wheelchair, explaining yourself, being chill and fun, answering all the wheelchair questions again, the upside being that at least most places were accessible so I didn't have to call and check before hand. Yes, that's what I do, you invite me somewhere and I research it, I use Google Maps to zoom in on streets so I can see where the dipped kerbs are, where are the nearest parking spaces, can I push myself that distance or is it easier to uber? (No, I don't do tubes and buses.)

Long before we had the internet and Google I used to carry a page ripped from Time Out in my purse, it was the page which listed the phone numbers of most of the bars and clubs in London, so if on a night out with friends I could masquerade party girl spontaneity by calling said bars or clubs in advance and give them a heads up that I was heading down in my chair. I decided to take this approach after so many occasions being turned away at the door for being a fire hazard, yep, seriously, people were smoking inside and their fire exits were probably all locked with a chain and padlock but I was the fire hazard. It was after too many nights of getting dressed up and rejected that I developed the 'call first' approach. The rejection and exclusion takes its toll, it is so much nicer to arrive at a bar, be greeted by a smiling bouncer who invites you to skip the queue and ushers you inside.

We all want to be welcomed, to be invited in, to be included. How would you feel to be excluded from your life as you know it?

If you had a life changing accident tomorrow would you be able to return to your home and your job, is your office accessible, could you get your own coffee in your favourite coffee bar, is it a flat entrance, could you get your own drink in your local bar. Would you be able to access all the local eateries to buy your own lunch near work? How many kerbs do you think you could manoeuvre your chair around, are you arms strong enough to life the weight of your body? Would you able to continue to date someone who lives on the 6th floor of a building with no elevator?

I've done such a great job of making it look easy that most of you have said at one time or another that you forget that I have a disability, I used to think of that as a good thing, a success on my part but now I see that maybe it's not such a good thing, maybe it was misleading. At college, at university, at new jobs, I always work hard to put everyone else at ease, so they'll relax around my disability and we can focus on building relationships and get on with the work. I've always loved the interaction with children when I visit schools to talk about disability, their honesty and innocent curiosity, it feels good to educate them about disability but I think I may have dropped the ball in educating adults honestly. I'm not looking for sympathy here I just think I owe to myself to speak the truth to honour my story and say that I have overcome a 'massive thing' sustained at a very young age, but in order to do that I have to admit it and accept that it was a huge trauma and damn it, it's really f*cking hard to do. I'm hoping that in acknowledging it publicly it will help me adjust to a new way of thinking. No more minimising. As my mama always says, "own it."

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I've realised in recent years that I have spent a lot of energy making out that my life as a paraplegic is so much easier than it actually is, a mind set I developed very soon after my accident, a ...

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I've not blogged in ages, 2017 has been a tricky year since my dad passed unexpectedly in December and though I do have a few blog ideas in the pipeline this topic has been bubbling about in my brain for a while and it seemed fitting to post on the anniversary of my accident - 27 years this year - whoop, whoop to me! I appreciate that for many people it might seem odd to celebrate a date on which an accident left me paralysed but in truth the alternative could have been much worse, it's a celebration of survival.

This time of year tends to be a period of reflection for me, looking back over life since my accident (a few other anniversary blogs in the archives), I've realised in recent years that I have spent a lot of energy making out that my life as a paraplegic is so much easier than it actually is, a mind set I developed very soon after my accident, a coping mechanism for myself but also a very effective way of swerving people's sympathy, I'm not good at dealing with sympathy, it makes me feel claustrophobic, and has the opposite of the intended effect, it makes issues seem so big as to be insurmountable; by minimising things I could swerve the icky sympathy and convince myself that paralysis was no biggie.

I minimised so many things, so much rejection, so many complications, but in minimising them I was also unconsciously minimising myself, my own achievements and accomplishments; I'll admit I can seem very confident but I actually have rather low self esteem, I don't feel like I've achieved nearly enough and I play down everything that I do and I now suspect the two may be intertwined. In minimising my injury I minimised me.

I was a teenager, I didn't want to be different, I didn't want to be forgotten, I didn't want to be thought of as an inconvenience, a burden, needy, dependent, weird, ugly, unsexy, boring, dull, a problem, a medical disorder. I didn't want to be left out or excluded, I wanted to be included. I didn't want to make a fuss, (ok, occasionally I do like a massive fuss but there's a time and a place) I developed what appeared to be a teflon skin, it was necessary in order to seemingly deflect with whatever inappropriate or hurtful comments strangers or sometimes even friends might make about my disability.

Here's an example of the kind of bullshit that regularly comes my way; strangers I've met in bars think it's perfectly acceptable to ask me incredibly personal questions, if I can have sex, can I have children and can I orgasm? (In case you're now wondering the same thing, yes, yes and yes.)

While I'm raising the topic of questions, let me just paint this scenario for you, guaranteed to happen on most nights out. I'm having a great time with friends, chatting to new people when curious Cathy or eager Eddie wants to ask me a question...

To be clear, I'm prepared to answer the question, it doesn't upset me at all but ask yourself, are you prepared for the answer because let's be honest, it's unlikely to be a happy story is it?

I've no qualms talking about my accident but f*ck me, timing people, it's a total buzz kill in the middle of a fun night out and you're likely to get all over emotional....

You ask, I answer, you go silent, your arse clenches, you maybe whisper 'fuck' or 'Jesus', the temperature around us drops about 10 degrees and you say how awful it is, I say 'nah it's fine, it was years ago, hey shit happens' anything to restore the mood to what it was 30 seconds ago and use my energy to undo the tension you created. You may also be crouching down at this point because you're keen to be at my eye level and boy are your ham strings feeling the burn, but now you're a bit worried about offending me by standing up and complaining that your legs hurt. So I say 'you don't have to crouch down there', yup me making you feel better again. You tell me about an injury or illness you suffered that left you paralysed for 2 weeks so you know how it feels. Excuse me? 2 weeks? Wow, yeah you totally get it, those 2 weeks must have been so similar to twenty seven years. Then, if I'm really lucky you'll let me know that medical science is making great strides, um yeah but not for a 27 year old spinal cord injury. Again, there I go minimising, minimising my experience, this time to make you feel better.

There is also the example of the instances when I minimised to make myself feel better, usually during an encounter with the delightful f*ckwits who respond by telling my that I'm an inspiration because if it had happened to them it would be so unbearable that they would probably kill themselves. I used to assure these arseholes that it really wasn't all that bad, so much more to life, etc, etc. All of which is completely true but what angers me is that I continued to give them my time and energy, if you think so little of life that you couldn't cope with life sitting down then maybe you need to reassess your priorities; whatever, it's your issue, not mine and I shan't be expending any more energy trying to convince you otherwise.

I cannot believe how many times have responded with 'shit happens', to 'it could be worse' playing down my life experience like it's no big deal. Problem was over the years I believed it too. I thought of it as a blip, a curveball, a detour. Years before social media i was effectively filtering my experience, photoshopping some things out, flaunting the good stuff, (yes despite the nature of this post my life has largely been very good stuff).

I never saw it as a life changing accident that changed the course of my life. That was far too big to contemplate. It was so much easier to fit in, always smile, never complain, never explain, go to all sorts of lengths to be easy, breezy cover girl, make sure everyone around me didn't have to think about it more than necessary. Then I didn't need to think about the serious injury that happened to me, that changed my life, the life of that young, happy 14 year old girl girl. A child. A child who became an adult over night. It was so much easier to diminish its impact than feel it, to feel for the loss of potential of that teenage girl. Her potential. My potential.

I hope this isn't coming across as angry or self pitying disabled woman with a rotting chip on her exceedingly muscular shoulders, that's not where I'm coming from, I don't carry this around like a cross on my back, I just thought it was time to 'lift the veil' or turn the filter off. It was only after I broke my leg in 2015 and ended up on bed rest again that I truly began to acknowledge what a huge thing had happened to me 25 years earlier.

As much as I try not to let my disability dictate my life it does inform some of my decisions and life choices. I fought so hard to be included but I've also had to accept there have been many times in life when my disability has made that impossible and I have to accept exclusion. I've very rarely been in friend's homes as so many are upstairs or downstairs, it could just be they think I'm an unsocial oddball and no one wants me over but I hope it's the stairs. Events that I have missed because there no wheelchair access and it wasn't feasible to navigate the stairs, birthday or engagement parties where I just couldn't face the slog upstairs or being dependent on the kindness of bouncers so I feigned illness or conflicting plans. I love a rooftop view but I very rarely get to go up on rooftops whether in bars, hotels or friend's houses, there is no access, though huge props to the chauffeur in Paris who carried me to the very top of the Eiffel Tower many years ago. And a big bonjour to the 3 exceedingly fit firemen who carried me up a moving escalator out of the Louvre last weekend.

Here are a few questions for you to ponder...

How many wheelchair users do you see on your rush hour commute? Think about it, you're on the packed 7.14am to Waterloo or Liverpool St, where's the wheelchair squeezing in?

How many disabled people work in your organisation?

How many disabled friends do you have in your social circle (aside from me)?

How many disabled children are in your child's school or play groups? Have you invited them over for a play date or a birthday party?

You're away with friends at a luxury hotel or a spa, how many times have you seen a pool hoist?

Independent retailers, coffee shops, restaurants, bars, I want to support you but is your premises accessible, you support me and I'll support you.

Is your feminist project inclusive and considerate of women with disabilities?

How often have you parked in a disabled bay or used a disabled loo under the rationale that you'll only be a few minutes? The few minutes that I really need it before a meeting, a job interview, an audition, a flight, a train. FFS.

How many on screen portrayals of disabled people have you seen that you believe are an accurate representation of living with a disability.

Can you name 5 famous people with a disability who are not Paralympic athletes?

How many disabled people have you seen at your local gym, yoga or pilates class?

Have you considered what it's like to have difficulty having privacy, struggling to find solitude with nature in a beautiful place because it's so damn inaccessible you need help to get there but then can't just chill with your own thoughts because you have a companion in tow to heave your arse up a hill.

No matter what your answers are I'm not being judgmental I just wanted to give a pause for thought, to consider inclusion vs exclusion.

I used to book dinners and parties in utterly inaccessible venues because they were hip or cool (eurgh) but haven't for some time, your business is not getting my money if you can't squeeze in a disabled toilet and keep it clear. (A big thanks to the companies I've worked for who have supported this when organising team events.) I would get carried up and down stairs to be at all the best parties in fear of missing out but no more, if it's not accessible there better be magic money tree at the top of those stairs. That or Liam Neeson and Idris Elba waiting for me with an ice cold margarita.

When I moved to LA I had to work hard at making new friends, that's no mean feat as an adult, to find your clique, there's a lot of trial and error, lots of forcing yourself out to meet new people, now imagine doing it all in a wheelchair, explaining yourself, being chill and fun, answering all the wheelchair questions again, the upside being that at least most places were accessible so I didn't have to call and check before hand. Yes, that's what I do, you invite me somewhere and I research it, I use Google Maps to zoom in on streets so I can see where the dipped kerbs are, where are the nearest parking spaces, can I push myself that distance or is it easier to uber? (No, I don't do tubes and buses.)

Long before we had the internet and Google I used to carry a page ripped from Time Out in my purse, it was the page which listed the phone numbers of most of the bars and clubs in London, so if on a night out with friends I could masquerade party girl spontaneity by calling said bars or clubs in advance and give them a heads up that I was heading down in my chair. I decided to take this approach after so many occasions being turned away at the door for being a fire hazard, yep, seriously, people were smoking inside and their fire exits were probably all locked with a chain and padlock but I was the fire hazard. It was after too many nights of getting dressed up and rejected that I developed the 'call first' approach. The rejection and exclusion takes its toll, it is so much nicer to arrive at a bar, be greeted by a smiling bouncer who invites you to skip the queue and ushers you inside.

We all want to be welcomed, to be invited in, to be included. How would you feel to be excluded from your life as you know it?

If you had a life changing accident tomorrow would you be able to return to your home and your job, is your office accessible, could you get your own coffee in your favourite coffee bar, is it a flat entrance, could you get your own drink in your local bar. Would you be able to access all the local eateries to buy your own lunch near work? How many kerbs do you think you could manoeuvre your chair around, are you arms strong enough to life the weight of your body? Would you able to continue to date someone who lives on the 6th floor of a building with no elevator?

I've done such a great job of making it look easy that most of you have said at one time or another that you forget that I have a disability, I used to think of that as a good thing, a success on my part but now I see that maybe it's not such a good thing, maybe it was misleading. At college, at university, at new jobs, I always work hard to put everyone else at ease, so they'll relax around my disability and we can focus on building relationships and get on with the work. I've always loved the interaction with children when I visit schools to talk about disability, their honesty and innocent curiosity, it feels good to educate them about disability but I think I may have dropped the ball in educating adults honestly. I'm not looking for sympathy here I just think I owe to myself to speak the truth to honour my story and say that I have overcome a 'massive thing' sustained at a very young age, but in order to do that I have to admit it and accept that it was a huge trauma and damn it, it's really f*cking hard to do. I'm hoping that in acknowledging it publicly it will help me adjust to a new way of thinking. No more minimising. As my mama always says, "own it."

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I've realised in recent years that I have spent a lot of energy making out that my life as a paraplegic is so much easier than it actually is, a mind set I developed very soon after my accident, a ...

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News Release: Untapped Potential of SDS – Scottish Care

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News Release: Untapped Potential of SDS – Scottish Care

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Today (Thursday 3 Aug) two new reports on the Scottish Government's flagship Self-directed Support legislation will be launched at an event in Glasgow.

The reports have been produced by Scottish Care, the representative body for independent care services, and highlight the opportunities that Self-directed Support can offer older people in deciding their care but which are not being utilised.

Self-directed Support became law in 2014 and signalled radical change in how care should be assessed, chosen and purchased in Scotland, giving far more choice and control to the individual at the centre of that care. However, recent reports have shown that this transformation has not occurred in most parts of Scotland and that older people in particular are being let down by this lack of progress. Scottish Government statistics released in June 2017 indicated that only 27 per cent of people who access social care have been given the option of how their support is delivered through SDS. When further analysed this equates to an even smaller percentage of older persons of whom 86% are opting for the status quo, likely because they are not informed properly of their options.

The first of these new reports highlights the importance of a human rights-based approach to Self-directed Support for Older People and how human rights models can overcome the many challenges currently being faced in implementing it. It stresses the importance of individuals being fully informed and therefore able to claim their rights in relation to their care provision.

The second report is focused on how Self-directed Support can improve day care provision for older people. It emphasises the need for the Scottish Government to put pressure on Health & Social Care Partnerships to release their hold on power around care provision and transfer this to individuals and families, as the law requires.

Both reports reach similar conclusions: that improvements are both possible and required but that the pace of change is slow, and that the majority of older people are still being offered a very limited choice or none at all when it comes to support for anything other than basic personal care.

CEO of Scottish Care, Dr Donald Macaskill said:

"These important reports emphasise that Self-directed Support can make a real difference to people's lives if implemented properly, but that this opportunity is currently going to waste through the prevailing of inflexible systems and power remaining in the hands of professionals rather than people. In order to make Self-directed Support work, there needs to be concentrated attention given to it by Scottish Government. This includes the need for effective monitoring, adequate resourcing and collaborative working. We cannot continue, at national and local government level, to ignore the human rights of older Scots."
A Human Rights Based Approach to SDS for Older People
Care Cameo - Meaningful Days

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Today (Thursday 3 Aug) two new reports on the Scottish Government's flagship Self-directed Support legislation will be launched at an event in Glasgow. The reports have been produced by Scottish Care, the representative body for independent care services, and highlight the opportunities that Self-directed Support can offer older people in deciding their care but which are not being utilised.

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News Release: Untapped Potential of SDS – Scottish Care

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News Release: Untapped Potential of SDS – Scottish Care

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Today (Thursday 3 Aug) two new reports on the Scottish Government's flagship Self-directed Support legislation will be launched at an event in Glasgow.

The reports have been produced by Scottish Care, the representative body for independent care services, and highlight the opportunities that Self-directed Support can offer older people in deciding their care but which are not being utilised.

Self-directed Support became law in 2014 and signalled radical change in how care should be assessed, chosen and purchased in Scotland, giving far more choice and control to the individual at the centre of that care. However, recent reports have shown that this transformation has not occurred in most parts of Scotland and that older people in particular are being let down by this lack of progress. Scottish Government statistics released in June 2017 indicated that only 27 per cent of people who access social care have been given the option of how their support is delivered through SDS. When further analysed this equates to an even smaller percentage of older persons of whom 86% are opting for the status quo, likely because they are not informed properly of their options.

The first of these new reports highlights the importance of a human rights-based approach to Self-directed Support for Older People and how human rights models can overcome the many challenges currently being faced in implementing it. It stresses the importance of individuals being fully informed and therefore able to claim their rights in relation to their care provision.

The second report is focused on how Self-directed Support can improve day care provision for older people. It emphasises the need for the Scottish Government to put pressure on Health & Social Care Partnerships to release their hold on power around care provision and transfer this to individuals and families, as the law requires.

Both reports reach similar conclusions: that improvements are both possible and required but that the pace of change is slow, and that the majority of older people are still being offered a very limited choice or none at all when it comes to support for anything other than basic personal care.

CEO of Scottish Care, Dr Donald Macaskill said:

"These important reports emphasise that Self-directed Support can make a real difference to people's lives if implemented properly, but that this opportunity is currently going to waste through the prevailing of inflexible systems and power remaining in the hands of professionals rather than people. In order to make Self-directed Support work, there needs to be concentrated attention given to it by Scottish Government. This includes the need for effective monitoring, adequate resourcing and collaborative working. We cannot continue, at national and local government level, to ignore the human rights of older Scots."
A Human Rights Based Approach to SDS for Older People
Care Cameo - Meaningful Days

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Today (Thursday 3 Aug) two new reports on the Scottish Government's flagship Self-directed Support legislation will be launched at an event in Glasgow. The reports have been produced by Scottish Care, the representative body for independent care services, and highlight the opportunities that Self-directed Support can offer older people in deciding their care but which are not being utilised.

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Disability Studies: What Is It and What Difference Does It Make? Ferguson & Nusbaum 2012

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Disability Studies: What Is It and What Difference Does It Make? Ferguson & Nusbaum 2012

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Disability must be studied in its social, cultural, and historical context as much as the personal conditions of impairment and functioning must be studied in their medical and educa-tional contexts.

This does not have to be an either-or proposition. Most scholars in disability studies readily acknowledge tbe personal reality of impairments. Studying tbe social bistory of intellectual disability does not mean that the personal experience is irrelevant. Indeed, much re- cent writing has urged renewed attention to the "em- bodiment" of disability (Finger, 2006; Shakespeare, 2006; Siebers, 2008)

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VIEWPOINT: Segregation is a choice, not an accident | Discover Society

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VIEWPOINT: Segregation is a choice, not an accident | Discover Society

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Miro Griffiths
The prospect of ensuring disabled people have the right level of support in order to participate in the education system has continuously been questioned and undermined. The Coalition Government in 2010 called to end the "bias" towards inclusion; focusing, rather, on the diagnostic assessment tools to detail school children's medical needs and shift policy to undermine an inclusive education approach. The recent Equality and Human Rights Commission highlighted disabled students as having lower attainment rates in school, twice as likely as their non-disabled peers to not be in education, employment or training and the proportion of disabled people with no qualifications was three times that of non-disabled people. Currently, disabled people and their user led organisations (organisations run by and for disabled people) are raising awareness of the government's £30 million cuts to the Disabled Student Allowance programme.

The cuts will be severe; no funding for expensive assistive technology, no funding to pay for additional staff to provide academic support (note-taking, sign language interpreters, examination support or study skills mentoring) and no funding to meet the additional transport costs incurred because of disability. With the infiltration of neoliberal economics becoming the inspiration for how universities should operate, we will expect to see a drop in the numbers of disabled people getting and remaining in university. Attainment levels predominately become a reflection of the barriers imposed upon the student as they attempt to access their studies. With universities taking responsibility for addressing the access and support requirements of disabled learners, there will be a reluctance to take on disabled undergraduates and postgraduates - and students will, no doubt, be reluctant to inform staff of their "experience of disability". We witnessed this within the employment sector, which led to the Access to Work initiative.

Disability is often seen as a burden upon society - stereotypical representations in the media and political rhetoric led to disabled people being perceived as worthless and unproductive. Fictional depictions of disabled people are usually portrayed as pathetic, sinister or an object of ridicule; personal accounts of those favouring assisted suicide regularly highlight the issue of 'being/becoming a burden' and - every so often - influential figures suggest disabled people should be paid less than the minimum wage.

These types of views, in turn, justifies medical interventions. Contemporary service provision is based upon the assumption that the problems facing disabled people is a result of their medical condition. Prevention, rehabilitation and re-enablement take precedence over adjusting the structured social environment to take account of the needs and aspirations of disabled people. Access to support is determined by medical assessments and medical professional scrutiny, which reinforces the perspective that disabled people's marginalisation is a direct consequence of their physical impairment, learning disability and/or health condition. Not only does this lead to further exclusion and isolation but has also led to tragic deaths of people placed within institutions - such as 18 year-old Connor Sparrowhawk, who drowned in an assessment and treatment unit.

Within education, there are separatist approaches to schooling - such as "mainstream" and "specialist". Under the current system, learner's "abilities" to perform standardised tasks are scrutinised and teachers and educators make judgements on where these pupils should "belong" or what level they should be achieving.

Once in the system, learners can fail repeatedly to have their needs met - as highlighted in the proportion of learners labelled with 'special educational needs and disabilities' attending secondary mainstream settings dropping from 40.5% (2012) to 33.1% (2016). Disabled students in England, Wales and Scotland are significantly more likely to be permanently or temporarily excluded compared to the non-disabled peers. This is not because of individual's access requirements, support needs or medical diagnosis - it is because pupils have experienced rejection by an educational environment that is supposed to support their personal and academic development.

A Social Construct
Our society is incredibly exclusionary and our education system is at the core of this. By accepting this interpretation of disability, it becomes no surprise that only 18% of disabled people get a job through the UK Government's "Work Programme" or that over 50% of disabled adults are not in employment compared with 20% of the non-disabled adult population. Disabled young people (16-24) and women have the lowest median hourly earnings and the majority of people's support packages are means-tested and incur charges placed upon the individual. The intake of disabled academics also remains low.

It is also worth noting that the UK is the first country to be investigated for human rights violations towards disabled people. The United Nations inquiry concluded that austerity policies have disproportionally and adversely affected disabled people - particularly in relation to the cuts to social care and the Independent Living Fund, the flawed medical assessments associated with employment support and increase in disabled people experiencing debt and eviction. It was also acknowledged that disabled people were portrayed as "lazy and putting a burden on taxpayers". In response, the UK government rejected the findings and dismissed the recommendations to address the violations, stating "while the government continues to improve and build on the support available to disabled people, it stands by and is proud of its record".

But effectively, disability is socially constructed. It has developed because of the dominant political, economic and cultural frameworks - which have established negative social attitudes towards disabled people, policies that focus on medicalisation and inaccessible built environments. This means disability is a result of society's failure to provide adequate and appropriate support. This is known as the Social Model of Disability - an idea and tool born from the conversations between disabled campaigners, activists and their user led organisations.

All of this shows just how far society has to go to bring about disabled people's emancipation; if it is to be realised it requires the debate surrounding disablement to be synonymous with political agendas as well as become part of discussions on empowerment, choice and citizenship.

Time for Change
There is a need to map existing organisations who foster the demand and desire for inclusive education; the Alliance for Inclusive Education demonstrates what is required to ensure every learner has equality and participation in all aspects of the learning environment. Article 24 of the United Nations Convention on the Rights of Persons with Disabilities details what is expected in an inclusive education system, from early years to higher education. The 2030 Agenda for Sustainable Development outlines the expectations for what state governments should be doing.

Positive change can only be achieved if we formulate the problem correctly and offer potential solutions. The Universal Design for Learning initiative offers hope by providing a tool to change our approach to teaching, assessing and providing services. It has been developed with input from across Europe and can be utilised from the perspective of scholars, teachers or students.

Alas, it is becoming increasingly important that an inclusive education will require allies from across society to mobilise together. An inclusive education system is one that supports an individual to discover their own way under their own initiative and focus on equipping students to enquire, explore their innovative ideas and challenge dominant themes. Current policy and practice undermines every attempt to move towards an inclusive approach and, ironically, as I conclude this article using my voice recognition software and support from a personal assistant (both funded through the Disabled Student Allowance) I am left wondering how we create the idea for a future education system within the present one.

Further Reading:
Levitt, J.M. (2017), Developing a model of disability that focuses on the actions of disabled people. Disability & Society, 32:5, 735-747.
Oliver, M. (2013), The social model of disability: thirty years on. Disability & Society, 28:7, 1024-1026.
Runswick-Cole, K. (2011), Time to end the bias towards inclusive education? British Journal of Special Education, 38: 112-119.
Slorach, R. (2016), A Very Capitalist Condition: A History and Politics of Disability. London: Bookmarks.
Miro Griffiths MBE is a PhD researcher and teacher at Liverpool John Moores University; his research interests are disability studies, political ideology and social movements. He has worked on human rights for over fourteen years and collaborated with various organisations, institutes and government departments on a wide range of issues pertaining to disability. He currently advises - amongst others - the European Network on Independent Living, the British Council and the European Commission.
Image Disability News Service

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VIEWPOINT: Segregation is a choice, not an accident

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Miro Griffiths The prospect of ensuring disabled people have the right level of support in order to participate in the education system has continuously been questioned and undermined. The Coalition Government in 2010 called to end the "bias" towards inclusion ; focusing, rather, on the diagnostic assessment tools to detail school children's medical needs and shift policy to undermine an inclusive education approach.

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Round Table Discussion: Care Act (2014) - Assessments and Effective Conversations | NDTi

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Round Table Discussion: Care Act (2014) - Assessments and Effective Conversations | NDTi

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The following notes are from a round table discussion that took place on the 11th July 2017.

Participants:
David Brindle The Guardian, Carole Croxford People2People & Shropshire Council, Chris Denovan Somerset County Council, Clenton Farquharson TLAP and person who uses care and support services, Bill Love NDTi, Shona McFarlane Leeds City Council, Lyn Romeo Chief Social Worker for Adults, Jenny Pitts NDTi, Caroline Spiers TLAP, Gordon Waigand Derby City council, Emma Watt Anthony Collins Solicitors, Julia Winter Person who uses care and support services
Discussion Overview:
The Care Act 2014 (section 9) places on local authorities a duty to carry out assessments that understand:

the impact of the adult's needs for care and support on their wellbeing

the outcomes that the adult wishes to achieve in day to day life

to what extent, the provision of care and support could contribute to the achievement of those outcomes

Challenge 1: To meet this duty, most local authorities have introduced complex and time consuming assessment processes. The content of the process is frequently driven not by the individual but by perceptions about: the need to gather data that will be of use to the authority and regulators (even if there is no evidence of the data ever being of any actual use); risk and; the need to identify who is eligible or not for precious resources.

Challenge 2: The processes for undertaking assessments are driving waiting lists and frustrations. Frequently staff go into the person's home, whether it is needed or not (and often some months after the initial contact), and ask pages of questions, whether they are relevant or not, and invest significant time in writing up the assessment and seeking permissions to act.

Challenge 3: Many people being assessed do not understand the point of much of the process and are not satisfied that their needs have been explored or the outcomes offered are suitable.

The processes adopted by most local authorities are not necessary and do not deliver a responsive or effective service

A Care Act compliant assessment can comprise a good conversation carried out in a way that is proportionate to the person's needs and circumstance if the person is informed of its purpose and has a record of that conversation.

A number of local authorities have been exploring how to replace ineffective assessment processes with meaningful conversations. A good assessment is a process which should start with that conversation. In many situations, it may need to go no further to comply with the terms of the Act.

Having a conversation with the person is not simply rebranding the current data gathering and recording process

The style, content and recording of the conversation has to be genuinely coproduced with people with experience of being subject to assessment processes. Conversations need to be about the person. This means being led by their needs, aspirations and assets. It also means having an appropriate and proportionate style in terms of how the conversation takes place, where and how it is recorded and followed up.

The systems used by local authorities to support conversations also need to be appropriate and proportionate

This will include staff training, staff support, delegated decision making, monitoring and review.

Effective Conversations are already having positive results

As a result of this change, local authorities are identifying improved satisfaction from people and staff, significantly reduced waiting lists and better targeting of resources.

There is a need for clarity of the legal framework and a sharing of the emerging evidence about effective, proportionate conversations.

including:

For more information on this note contact Bill.Love@ndti.org.uk

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Round Table Discussion: Care Act (2014) - Assessments and Effective Conversations

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The National Development Team for Inclusion (NDTi) is a not-for-profit organisation which works to promote inclusive lives for people who are most at risk of exclusion and who may need support to lead a full life. NDTi exists to make change happen - chang

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Rewriting history: the case of the Disability Discrimination Act 1995

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Rewriting history: the case of the Disability Discrimination Act 1995

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The year 2015 marked the 20th anniversary of the passage of the Disability Discrimination Act and since then I have noticed a tendency to rewrite the history of what actually happened. Twenty years after its passage, the legislation is almost exclusively being presented as a cause for celebration not just in the media but also by also by politicians, some activists and even some organisations controlled and run by disabled people. In this version of history the Act itself is seen as the glittering prize at the end of a campaign for disability rights lasting decades in which everyone was heading in the same direction.

As an active participant in the events leading up to its passage myself, this is not how I remember it. In what follows I therefore provide my own version of the history of the Disability Discrimination Act 1995 which suggests that the campaign was often bitter and divisive and that politicians and the disability charities were frequently dragged in directions they simply did not want to go. I go on to suggest that this is not simply a sterile and pointless debate about something which happened many years ago, but has important lessons for disability politics today.

As Britain emerged from the first 'age of austerity' after the Second World War, disabled people found themselves suffering from benign neglect. As the postwar economy picked up and the welfare state began to make an impact on people's lives and their living standards, disabled people still faced a stark choice between coping on their own and with help from their families or going into residential care. The disability charities who were around at the time offered little in the way of alternatives and were locked into this view that disabled people either coped on their own or went into care.

While many disabled people meekly accepted this state of affairs, by the 1960s mumblings of discontent were beginning to emerge. The Disablement Income Group was formed around this time to promote the idea that poverty was the main problem which disabled people faced and a national disability income was the solution. Following a letter published in the Guardian a new organisation emerged called the Union of the Physically Impaired Against Segregation, which argued that poverty was not the cause of disabled people's problem but a symptom of a much wider problem; namely that disabled people were excluded from society by a whole range of barriers that they faced.

The British Council of Organisations of Disabled People (BCODP) developed this idea of disabling barriers into a full-blown platform for social change when it was formed in 1981 to give a national voice to the rumblings of discontent of disabled people which had been growing louder year by year. The BCODP promoted an integrated strategy for change comprising developing the social model as the means to understand disability, properly enforceable civil rights legislation to end discrimination against disabled people and independent living, by which they meant being in control of their own services and not managing without any help from the state.

The government, political parties and disability charities were all taken aback by this radical platform for change and their original position was to deny its relevance and to suggest that these were just the ideas of a few radical disabled people and they would soon disappear. They became even more disturbed when this radical minority reached more than 100,000 full members and many showed themselves to be willing to take to the streets for non-violent direct action in support of their ideas.

This disability establishment gradually came to realise that they must take these ideas seriously, although the government of the day stubbornly refused to acknowledge the fact that discrimination was a daily problem for many disabled people. It was not until the BCODP undertook a research project funded by the Joseph Rowntree Foundation and produced a book in 1991 documenting the extent of discrimination which disabled people faced in their daily lives that the government changed their minds. They could hardly do otherwise because the evidence in the book was based on their own statistics.

In the early 1990s a number of civil rights draft bills were drawn up in the hope that a private members bill might be the way to get legislation onto the statute books, but with little success. Eventually the government produced its own draft bill which made its way through parliament, and in 1995 the Disability Discrimination Act became law.

From the outset the flaws in the legislation were obvious and concerned both the way it defined disability as an individual, medical problem and that 'reasonable accommodation' was central to its making proper enforcement virtually impossible. The Act even endorsed discrimination in cases where it was deemed either too difficult or too expensive to make the changes necessary to end discrimination.

This effectively split the disability lobby. Those organisations like the BCODP and others controlled by disabled people wanted nothing to do with it and argued that the campaign for comprehensive, fully enforceable civil rights legislation should go on. The disability charities, on the other hand, argued that this was the best on offer for at least a generation and that they should be fully involved in order to make the best of it. Some disability activists also took the latter course and became members of the Disability Task Force, which soon became the Disability Rights Commission whose responsibility was to monitor and evaluate the Act.

The Disability Rights Commission also had an enforcement function and while some cases did come to court, on the whole it saw its job as trying to educate and persuade people and institutions not to discriminate. The New Labour Government when it came to power shortly afterwards showed no more inclination to enforce the law than the previous government had, and eventually the Disability Discrimination Act became subsumed under broader equalities legislation and the Disability Rights Commission was integrated into the Equalities and Human Rights Commission.

When new governments came to power in 2010 and 2015 like their predecessors they failed to encourage the legislation and, in reality, sought to erode disabled peoples' rights even more. The recent decision in the British referendum to exit from Europe further erodes disabled peoples' rights particularly because we will no longer have recourse to the European Court of Human Rights.

My version of this history therefore suggests that, far from being the landmark legislation which many people now claim, it was little more than a betrayal of disabled peoples' struggle to be fully included in society and any reading of disability history since the millennium supports this view and it is clear that discrimination against disabled people is still alive and well in twenty-first-century Britain.

So it is important that the dominant, celebratory version of this history is constantly challenged not just to prevent some careerist individuals from wrongfully claiming their place in our history, but more significantly so that disabled people and our organisations really understand the lessons that my version of this history have taught us.

To spell out what these lessons are: to begin with, that we can take pride in our own achievements; additionally, that we should beware those individuals and organisations who claim to be our friends but are merely promoting their own interests and agendas; and finally, that no matter how bleak the future looks, we built our own political movement once and we can certainly do it again.

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Rewriting history: the case of the Disability Discrimination Act 1995

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The year 2015 marked the 20th anniversary of the passage of the Disability Discrimination Act and since then I have noticed a tendency to rewrite the history of what actually happened.

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A new commitment on health and wellbeing for the Civil Service - Civil Service

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A new commitment on health and wellbeing for the Civil Service - Civil Service

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Since taking on the role of Civil Service Health and Wellbeing Champion last September, I've heard from many of you about what you think can make a difference to our health and wellbeing, inside and outside work. Your views and suggestions have helped to shape my own priorities as champion.

A year ago, John Manzoni, Chief Executive of the Civil Service, outlined the vision for ' A Brilliant Civil Service '. We can only realise our ambition to be part of the best Civil Service in the world if we work in an environment that supports our wellbeing and helps us to look after our own health. We are at our most productive and fully engaged at work when we are healthy, happy and feel able to be ourselves.

We've just held the second , Civil Service Physical Activity Week , when we asked you to consider increasing your activity levels by making a few small changes or taking part in some fun activities with friends and family. I want to build on this and the other great work on health and wellbeing happening across the Civil Service and within departments, including actions on mental health and a workplace adjustments healthy lifestyle .

We should be ambitious. To help guide action, I have identified five priorities for health and wellbeing in the Civil Service.

1. Provide visible leadership for health and wellbeing

Creating a Civil Service culture that recognises the importance of health and wellbeing, and builds it into everyday decisions about how work is organised and change is managed, is crucial. I want to see leaders at every level ensuring that this happens. Each main department now has a senior health and wellbeing champion and I will be working with them to implement this agenda and make sure things happen on the ground.

We've been holding practical sessions at Civil Service Live on building resilience and managing stress. I want to see us doing more to increase capability in these areas across the Civil Service.

We will also look at what more we can do to ensure managers are supported in their roles in a way that promotes health and wellbeing in the workplace. We already have some new products on the Civil Service Learning website and are making sure you can access easy-to-read guidance on a range of health and wellbeing issues, including links to helpful websites.

2. Encourage an open dialogue leading to action on mental health

We know that one in four people will be affected by a mental health problem this year, yet there is still a reluctance to openly discuss this issue. As a result, too many people suffer in silence and don't get the help they need. I want to create a culture that encourages you to talk about any mental health issues you may have, whilst equipping your manager to respond.

Senior leaders including Rupert McNeil, our Chief People Officer are already talking openly about their mental health experiences. I want this to be part of a greater openness so that those of you experiencing mental health problems receive support at the earliest stage. We can then make sure you get the help you need, whether from Mental Health First Aiders or their equivalent, Employee Assistance Programme advisers or Occupational Health.

3. Promote the benefits of a healthy lifestyle

I want us to create a working environment that promotes physical activity and healthy eating.

We all know that physical activity has general health benefits but it also helps in preventing and treating musculoskeletal problems. We are going to build on Physical Activity Week and do some work to see how we can help those of you who are office-based to move more during the working day.

4. Promote national wellbeing campaigns

I want to make sure that you have information about issues that may affect you and where you can get more help and advice. We will be promoting campaigns such as and the free NHS health checks for those aged 40 to 74 available in England, together with similar initiatives in other parts of the UK.

I will also be supporting activities organised by departments. In May I highlighted Mental Health Awareness Week and the benefits of being physically active. Thanks to all of you who took part or supported the Charity for Civil Servants Walking Challenge . You walked an incredible 563,353 miles, raising over £25,000 for this good cause.

5. Support people to stay at work or return to work

Finally, I want to ensure that those of you with health issues have the support, guidance and access to services you need at the right time.

I will work with departments to ensure you receive support from your manager and Occupational Health to help you back to work if you have a health problem. We will also continue to develop the help provided if you need a workplace adjustment through the Central Workplace Adjustment Service. This can help with adjustments for mental as well as physical health problems.

New award

This year we have also introduced a new Health and Wellbeing category in the annual Civil Service Awards . The recipient will be a team or individual that has made a significant contribution to promoting or improving health and wellbeing within the Civil Service, helping to make it a great place to work. Nominations close on 21 July .

We can only create a healthy, happy and productive workforce if we work together. You should hear from your senior health and wellbeing champion shortly about the action they and your department are undertaking on these priorities.

I'd love to get your further thoughts and suggestions on how we can take these priorities forward. You can post them below or send them to contact.us@csep.gov.uk .

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A new commitment on health and wellbeing for the Civil Service

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Since taking on the role of Civil Service Health and Wellbeing Champion last September, I've heard from many of you about what you think can make a difference to our health and wellbeing, inside and outside work. Your views and suggestions have helped to shape my own priorities as champion.

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Improving the Physical Health of People with Serious Mental Illness | AHSN Atlas

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Improving the Physical Health of People with Serious Mental Illness | AHSN Atlas

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"This programme is a real opportunity to improve the life expectancy and quality of life of people with serious mental illness"
Kate Dale, developer of the template

Overview

The Yorkshire & Humber Academic Health Science Network (AHSN) has led the scaling up and adoption of the 'Bradford Physical Health Review Template' to improve the quality of health checks for people with a serious mental illness (SMI) who are at risk of dying prematurely due to preventable physical conditions.

The template, developed at Bradford District Care Foundation Trust, supports healthcare professionals to identify patients with conditions including high blood pressure, diabetes and cardiovascular problems.

With 47,713 health checks, potential cost savings in the Yorkshire and Humber region alone are estimated to be £11.3 million over the next 10 years.

The AHSN piloted an initial rollout across two Mental Health Trusts and two Clinical Commissioning Groups (CCGs). It has supported organisations nationally including Imperial Health College Partners, Cumbria Mental Health Services and a prison to implement/pilot the template.

The template is available through the SystmOne, EMIS and RIO web platforms and has been used by 74 CCGs. An eLearning module produced by the AHSN went live in January 2017.

The template has been cited as a good practice case study in national reports including the MINDSet website and NHS England's 'Improving physical Health of people with serious mental illness'.

Challenge/problem identified

People with a serious mental illness (SMI) are at risk of dying prematurely, in some cases 20 years earlier than the general population. Many of these deaths are preventable if conditions like high blood pressure, diabetes and cardiovascular problems are identified and treated early. Estimates suggest there would be up to 12,000 fewer deaths from cardiovascular disease (CVD) if people with SMI had the same outcomes as the general population. The Five Year Forward View for Mental Health recognises the need to address this.

The National Institute for Health and Care Excellence (NICE) recommends that annual physical health checks should be conducted in people with SMI. Such health checks are designed to look at the six domains; Smoking, Lifestyle, Body Mass Index (BMI), Blood pressure, Glucose regulation, Blood lipids.

People with severe mental health problems receive variable levels of physical care in both primary and secondary care settings. The 'Bradford Physical Health Review Template' aims to reduce the variability of care by systematically guiding healthcare professionals through appropriate physical health checks to support the diagnosis of conditions and identify the need for appropriate interventions to achieve improved physical health and wellbeing.

Actions taken

Two Mental Health Trusts and two CCGS across the Yorkshire & Humber region were supported by the AHSN to pilot the use of the template and take a joined-up approach between primary and secondary care to improve the physical health of the patients.

The Yorkshire & Humber AHSN commissioned an independent cost-effectiveness evaluation of the tool and commissioned an eLearning module to support uptake of the template in different CCGs.

Promotional resources including a video of the learning of one Mental Health Trust who adopted the template have also been developed by the Yorkshire & Humber AHSN and tweetchats, blogs and speaker slots at events have also taken place with key stakeholders across NHS England and Public Health England, including the former national clinical director for Mental Health, Geraldine Strathdee.

An independent cost-effectiveness evaluation of the tool by York Health Economic Consortium (YHEC) has shown the cost of each health check is around £68 (including staff time to deliver the check, administration time to support the health check and training costs for the staff). The evaluation showed the incremental benefit of the health check intervention over 10 years to be £236.68 per patient, hence for a cohort of 1,000 patients, the impact will be a saving of £236,680 over 10 years.

Impacts/outcomes

With 47,713 health checks, potential cost savings in the Yorkshire and Humber region alone are estimated to be £11.3 million over the next 10 years.

"The Yorkshire and Humber AHSN is a shining example of an AHSN that has worked to the best of implementation science and has tackled one of the largest science to floor gaps: bringing access to physical health care for people with mental illness."
Dr Geraldine Strathdee, former NHS England National Clinical Director for Mental Health

The Yorkshire & Humber AHSN is providing training and pathway guidance to pilots in primary and secondary care in West Yorkshire as well as promoting and supporting the rollout of the template nationally. A free eLearning module has been developed in partnership with Virtual College. This is now available to healthcare professionals working in primary care through the Yorkshire & Humber AHSN's website

Implementation of the template has resulted in a 372% increase in checks in one Trust alone, 610 organisations and 74 CCGs adopting the template and delivery of 2,600 health checks.

For one patient, the health check identified profound tachycardia resulting in a medicines review and a revised care plan with a reduced clozapine dosage.

The success of the Physical Health Review Template and the Shared Care Recommendations in preventing ill health in this high-risk group and in promoting 'parity of esteem' has resulted in national interest and the project has received the following recognition:

Shortlisted for the HSJ Awards 2012

Winner of the National Patients Safety Award in 2013

Project evaluation published in the Psychiatrist Bulletin 2014

Project published in the Independent Nurse 2015

Received Highly Commended for the Positive Practice Collaborative in 2015

Cited as good practice in the Nuffield Report 'Reshaping the Workforce' May 2016

The project lead has been appointed as the national lead for the Positive Practice Collaborative for Physical Health within Mental Health

Project endorsed by Dr Geraldine Strathdee, former NHS England National Clinical Director for Mental Health

Referenced as positive practice in NHS England's IMPROVING THE PHYSICAL HEALTH OF PEOPLE WITH SERIOUS MENTAL ILLNESS: A PRACTICAL TOOLKIT

Plans for the future

The Yorkshire & Humber AHSN continues to support pilots in primary and secondary care in adopting the template and shared care protocols across West Yorkshire as well as promoting the adoption of the template nationally. The Yorkshire & Humber AHSN is also promoting the free availability of a new eLearning module for healthcare professionals working in primary care. This module is accessed through the Yorkshire & Humber AHSN's website.

Which national clinical or policy priorities does this example address?

Care and Quality

Health and Well Being.

Start and end date

This work commenced in April 2015 when the Physical Health Review Template had only been adopted by Bradford District NHS Foundation Trust. Promoting the resources and outcomes of this work programme will continue in 2017/18.

Contact us for help and advice

Stephen Stericker, Head of Programmes
E: Stephen.stericker@yhahsn.com

Shaun Lockwood, Head of Marketing & Communications
E: Shaun.lockwood@yhahsn.com

Find out more

Physical health/wellbeing clinics from Geoff Fox on Vimeo.

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Improving the Physical Health of People with Serious Mental Illness

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"This programme is a real opportunity to improve the life expectancy and quality of life of people with serious mental illness" Kate Dale, developer of the template The Yorkshire & Humber Academic Health Science Network (AHSN) has led the scaling up and adoption of the 'Bradford Physical Health Review Template' to improve the quality of health checks for people with a serious mental illness (SMI) who are at risk of dying prematurely due to preventable physical conditions.

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COMMUNICATION CHALLENGES – EVERY LIFE IS EQUAL

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COMMUNICATION CHALLENGES – EVERY LIFE IS EQUAL

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Imagine not being able to say a single word. Or consider that your speech is labored and difficult for others to understand, therefore conversations move too quickly for you to participate. This is the reality for many people with intellectual challenges. The fact that they are nonverbal or that their speech is not understandable adds a level of complexity to their lives that most of us will never experience. The frustration, confusion and even fear that results from not being comprehended by others can have profound consequences on their quality of life, their physical safety, and their emotional well-being.

For those who are not able to express themselves in a way that is easily understood, it can be a lifelong challenge to be acknowledged and to be included. That is why it is critical to educate society so that people realize that just because someone has a disability which makes it difficult for them to communicate verbally does not mean that they don't have important things to share.

Over the years, individuals have been marginalized because they could not express themselves with understandable speech, or they chose not to speak at all. This led to a tragic leap of logic which made listeners believe that these individuals did not have anything of value to say.

Right now you and I are communicating without verbal words being exchanged, and yet we are connected by a subject of interest in the hope that information can be transmitted from one person to another. If you have opinions on this topic you can respond by leaving a comment. At that point, we will have shared our thoughts with each other even though we may be on different continents. No speech will have been involved and yet, hopefully, we will have each had a mutually satisfying exchange of ideas that are useful. This is just one example of the power of communication when the two parties do not verbally speak to each other.

Because all human beings share the overwhelming desire to be understood, we are driven to communicate throughout our lives. It is one of the early milestones for babies, and it's one of the essential pillars that make up the foundation our social order is built on. It allows the free exchange of ideas and information between individuals and groups. That is why it is morally wrong to exclude individuals who have difficulty verbalizing their thoughts. Society has a responsibility to ensure that every person is able to communicate in a way that is appropriate for them. Whatever it takes to allow a person to express their wants and needs must be made available to them.

We can just look at the dramatic rise of facebook, twitter, and blogs and it is obvious that our desire to connect with others is a dominant part of our lives. However, it is the spoken word that most of us use to convey our hopes, dreams, pain, and frustration. When something happens in our lives, whether good or bad, we can't wait to share it with everyone. Part of the great joy of having good news is being able to tell others about it, and when we have bad news we feel better when we talk to someone. Our deep need to explain and complain is an integral part of the human effort to bond with others.

Because every person has the right to communicate and to be understood, it is morally wrong to dismiss another human being simply because they cannot talk clearly and effortlessly. A person whose speech is halting deserves to have our attention. They have the right to speak without being interrupted or having someone try to finish their sentence. We must show respect for their efforts to engage us. The right to communicate freely absolutely extends to those who happen to have challenges expressing themselves verbally. We cannot let their thoughts and ideas go unappreciated simply because we refuse to make the effort to understand them. There are many creative ways for a person to converse, and we have to be willing to make those opportunities and services available to those who might not be heard without them.

When a person with a disability attempts to tell us what they want or need, we have a responsibility to do everything in our power to fully comprehend them. It is up to each of us to do what is necessary to allow successful interaction between all people no matter what their circumstances might be. When someone's speech is difficult to understand, attentive listening is a sign of respect. When someone is nonverbal we honor their dignity by communicating in a way that is comfortable for them. Under no circumstances can we be dismissive of someone because it requires a little extra time and patience on our part to connect with them.

People who have challenges with their speech can be extremely imaginative and bursting with creativity. They have so much to offer that we must make sure that they have every opportunity to express themselves fully. When we protect the right of every member of society to share their thoughts, ideas, and opinions we all benefit from those contributions. No matter what method of communication is used to exchange information between people, the beauty of diversity enhances everyone's lives because what truly matters in our world can be expressed without words. After all, a person who is nonverbal does not actually have to say, "I love you", to be able to convey such a personal and heartfelt emotion. We just have to be willing to let them tell us in their own way.

The experience of life is to be shared with others. That is why not having your communication understood can create the worst kind of loneliness and isolation.

Every human being deserves to be included in the conversation of life.

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Imagine not being able to say a single word. Or consider that your speech is labored and difficult for others to understand, therefore conversations move too quickly for you to participate. This is the reality for many people with intellectual challenges. The fact that they are nonverbal or that their speech is not understandable adds...

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People with learning disabilities are still not recognised as fully human

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People with learning disabilities are still not recognised as fully human

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Stephen Bubb's report last week on the Winterbourne View scandal is his third in the last 18 months Winterbourne View - Time for change, Time is Running Out and The Challenge Ahead. He states at one point; "I am acutely aware we do not just want more reports". No. We don't need any more reports. There has been too much talk and way too much money flung at the wrong people.

Back in 2011, when Panorama exposed shocking abuse to patients with learning disabilities at Winterbourne View, our son, Connor (or Laughing Boy) was just 16, loving school, life and buses. He was refreshingly funny and unassuming (and diagnosed with autism and epilepsy). In March 2013, the Confidential Inquiry into Premature Deaths of Learning Disabled People (Cipold) found that learning disabled people die on average 20 years earlier than the general population. At about the same time, Connor was admitted into a short-term local assessment and treatment unit (ATU) run by Southern Health NHS foundation trust. He'd become uncharacteristically anxious and unpredictable. We thought he was in a safe space.

In July 2013, Connor drowned in the unit. He was left to take a bath unsupervised despite clear evidence of increasing seizure activity.

I can't explain what it's like to have your child die a preventable death in NHS care. To drown in a bath. It's impossible to make sense of. A senselessness compounded by the trust board minutes immediately reporting that Connor died from natural causes. In an almost numb space of horror and disbelief we wanted accountability and change. Drawing the dots between the Cipold findings and the response to Connor's death, we persuaded David Nicholson, the then chief executive of NHS England, to commission a review into how other unexpected deaths in Southern Health were investigated.

The #JusticeforLB campaign emerged; became, and remains, a diverse collective of people, with no budget, staff or hierarchy, no rules or formal structure, just commitment, love and dedication. We've collectively produced a private member's bill, a short film, two animations,a short play, a Justice quilt, a Justice flag that has waved high at two Glastonbury festivals and been snapped with the New Zealand disability rights commissioner in Auckland. The review into deaths commissioned by Nicholson was eventually published before Christmas and reveals figures far worse than we imagined. A chilling disregard for certain people, in life and in death.

Meanwhile the government's Winterbourne joint improvement programme fell apart, despite a concordat signed by 48 organisations; numerous meetings; endless talk; initial fake cheeriness and a hefty budget. The promise that the 3,500 or so people in units across the country would be allowed to lead lives worthy of the name failed to materialise. The numbers incarcerated remained constant, Norman Lamb, the then care minister, reluctantly talked of "abject failure" and the baton was passed to Bubb.

But he isn't the problem. It's the continuing lack of recognition of learning disabled people as fully human. And a continuing and baffling insistence on Winterbourne View as the cultural touchstone of inhumane practice in early 21st-century Britain (ironically) allowing more recent atrocities, including the deaths of Connor, Stephanie Bincliffe, Thomas Rawnsley, Nico Reed, Richard Handley and so many others, to be silenced. His final report calls for a commissioner with a statutory duty to promote, enhance and protect the rights of people with learning disabilities and their families in England. But we don't need additional (human) rights. We are all human.

Reforms pledged by NHS England shouldn't need a bespoke commissioner to ensure their delivery. Bubb's recommendation simply weaves further layers of unnecessary bureaucratic complexity and costly pointlessness into an already unworkable fabric. Maybe those with the power over lives should allocate a bit of diary time to hang out with and get to know people and families, explore everyday life, hopes and aspirations, and begin to recognise and understand the different contours of a cracking life.

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People with learning disabilities are still not recognised as fully human | Sara Ryan

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Stephen Bubb's report last week on the Winterbourne View scandal is his third in the last 18 months Winterbourne View - Time for change, Time is Running Out and The Challenge Ahead. He states at one point; "I am acutely aware we do not just want more reports". No.

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Give citizens real power for inclusive growth to succeed - RSA

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Give citizens real power for inclusive growth to succeed - RSA

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Give citizens real power for inclusive growth to succeed - RSA

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There are ways that government and cities could demonstrate their commitment to citizen engagement in pursuit of inclusive growth. One of our suggestions is that in future phases of devolution, localities should negotiate significant devolved funds that are controlled by their citizens through participatory budgeting.

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NDTI Housing choices for people with support entitlement

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Most charity failures due to 'trustee cowardice', says RNIB chair

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Most charity failures due to 'trustee cowardice', says RNIB chair

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The chair of RNIB has warned that trustees are too scared of challenging the executive team and called for radical changest to how charities are structured and regulated, in an essay published last week.

Kevin Carey, chair of RNIB, said in an essay for think tank NPC, entitled We need brave, in your face, hard-headed governance, that divisions between charities' boards and executive directors were "outdated" and unitary boards should be the default model.

He said: "Most charities don't fail because they lack a governance code, a risk register and a trustee handbook. They do so because of trustee cowardice.

"Assemble all the 360 degree appraisals, skills audits and Nolan Principles you like; they are redundant if nobody has the guts to say that the CEO is useless, the deficit is structural or, more widely, that the emperor has no clothes-and if there is one paramount reason for trusteeship it is this last."

Carey describes non-executive directors of private companies as having "less leverage than poodles" but says the situation is "much worse" in the charity sector.

"Charity law gives trustees all the responsibility and executive directors all the knowledge, power and capacity to obfuscate. This makes nonsense of any call to adopt good governance."

Unitary boards

Carey said that RNIB plans to apply to the Charity Commission for a unitary board, having already "adopted unitary governance at a secondary level".

He said: "I think the default for the governance of major charities should be unitary. It helps avoid the farce of the executive team not telling and the non-executive board not knowing; the executive team doing all the crisis management and the non-executives turning up once a quarter to smile at a crisis averted or to pick up the pieces."

Referring to the RNIB's recent merger with Action for Blind People, in which RNIB offered to "sacrifice its brand and very existence", Carey says more charities should prioritise their beneficiaries when discussing mergers.

Carey says trustees should be legally required to show good reason for rejecting merger proposals, similar to the way commercial boards act.

'Scrap the Charity Commission, NCVO and Acevo'

Carey warned that the sector, particularly larger charities, faces a "long-term deterioration" and that there is increasing opposition to their existence from politicians and the media.

He also suggested that the Charity Commission, the NCVO and Acevo should all be scrapped in favour of a self-regulatory regime for major charities, leaving smaller ones to operate under generic tax, civil and criminal law.

"Neither the Charity Commission, the NCVO nor ACEVO are fit for purpose. (We should scrap them all for a self-regulatory regime for major charities, leaving smaller ones to operate under generic tax, civil and criminal law)," he said.

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Most charity failures due to 'trustee cowardice', says RNIB chair

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The chair of RNIB has warned that trustees are too scared of challenging the executive team and called for radical changest to how charities are structured and regulated, in an essay published last week.

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The Interpretation Of Cultures  Clifford Geertz

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The Interpretation Of Cultures  Clifford Geertz

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Believing, with Max Weber, that man is an animal suspended in webs of significance he himself has spun, I take culture to be those webs, and the analysis of it to be therefore not an experimental science in search of law but an interpretive one in search of meaning.

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Amazon Kindle: The Interpretation Of Cultures (Basic Books Classics)

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The Interpretation Of Cultures (Basic Books Classics)

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The Politics of Poverty | Publications by A-Z | Library | The Centre for Welfare Reform

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The Politics of Poverty | Publications by A-Z | Library | The Centre for Welfare Reform

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Author: Simon Duffy

Dr Simon Duffy explores the facts behind poverty and inequality in the UK. He argues that the current political system is not concerned with eradicating poverty and that current rhetoric about poverty and inequality largely serves to disguise the injustice of the current system.

Introduction

Poverty in the UK is a serious problem, and it is a problem that is often ignored or wilfully misrepresented in political debate. Social injustice is wrong, but misrepresenting the nature of social justice is doubly wrong, because it encourages further injustice.

Of course there are natural and selfish reasons why we may all want to misunderstand the nature of justice, and usually such misunderstandings start by distorting a half-truth rather than deploying a lie. In the UK a common distortion starts with a twin pair of assumptions that are not exactly false, but are highly misleading:

Economic development requires freedom of exchange, or what is often called 'the market,' the freedom to buy and sell with flexible pricing. For most of us this means the freedom to buy things that others sell us and the freedom to sell our labour, by becoming an employee (or servant) of another person or organisation

When we freely enter into contracts with other people or organisations then we are bound by our promises. If we behave properly and follow the agreed rules, even if we end up poorer, it might still be said that we were treated fairly.

The first assumption is utilitarian. It is claimed the free market exists to serve the overall good; and there are good reasons to believe that markets can sometimes perform a useful social function. The second assumption is deontological. We are free to make our own decisions and promises, but we must accept the results of those decisions, even if other people seem to be doing better than us. In the UK people who believe strongly in these two assumptions, like the philosopher John Stuart Mill, are called liberals (although confusingly the term liberal means something very different in the USA).

Liberalism is a great philosophy, if you are wealthy, because it offers you a double comfort: Not only are you entitled to whatever you've got, but you can also persuade yourself that you are part of a system that is good for everyone (in the long-run).

However it does not take much imagination to realise that this cannot be the whole story. For injustice is a logical consequence of unrestrained economic freedom, and in every decent society there have always been systems, rules or institutions that are designed to reduce the injustices created by economic freedom.

Just think about what happens if we simply allowed people absolute economic freedom. First, those people who are more successful will, over time, may use their economic power to guarantee their own future success and so will make it harder for others to compete. This is why democratic governments tend to restrict monopolies or replace monopolies with nationalised industries, like the NHS, which work for everyone's benefit. It is also why public education and free university education matter, because it reduces the advantage the better-off can buy for their children.

Second, people who lose out will become more desperate, unable to sell their labour for income or only able to sell it at a very low price. This is why democratic government's have been forced to both set minimum wages and to create income security systems to redistribute money towards the poorer half of the population.

There is nothing in a free economic market that ensures that you will get a fair, reasonable or even adequate price for your labour. That's not how markets work. If you are very poor then you must be prepared to sell your time for next to nothing. Economic freedom has never naturally protected the interests of the poorest, the weakest or those without power. Instead it often releases the very worst in our nature: greed, avarice, pride and the sadistic pleasure of exploitation.

These statements should not seem controversial or challenging. They represent some of the hard-won lessons of the twentieth-century, a century which proved that the price we can pay for ignoring social injustice is revolution, war, terror and Holocaust. So, it may seem surprising that, in the early years of the twenty-first century, we seem to be in danger of forgetting all these important lessons. Not only do the half-truths of liberalism seem to be back in fashion, but many are even tempted to go a little further and embrace some utterly false beliefs:

Poverty is just a matter of perspective, it's all just relative, and the poorest even benefit from inequality, because inequality is a natural part of a free economic system. What really matters is economic growth, not the distribution of that wealth.

People who are not doing as well as you deserve to be poor, just as you deserve to be rich. In fact, economic success means you are a better person and economic failure means you are an inferior person. It is perhaps even dangerous to protect the poorest as this might encourage the wrong kind of people.

I think it is obvious that these beliefs are false; and I think it is also obvious why they are tempting. This kind of thinking is no longer liberal, it is much closer to fascism or eugenics. It pictures some humans as more valuable, more productive, more equal than other humans. Dog-eat-dog economic freedom is twisted into an engine for human improvement. I think it is this kind of extreme liberalism that is sometimes called neoliberalism.

It is also fascinating (in a rather horrible way) to see how the rather different idea of meritocracy has increasingly been promoted as if it offers a positive vision for society. This is peculiar in the extreme. Meritocracy means that 'the best' people should have the most power (and, it is typically assumed, the most money). In fact the term meritocracy is simply a modernised form of aristocracy - 'aristos' being the Greek word for the 'the best'. The difference is that the best is now presumed to be some cocktail of 'the clever,' 'the powerful' and 'the rich' - rather than landed nobles.

Old-fashioned liberalism was often combined with a commitment to charitable action: We have other obligations beyond keeping our promises, and any financial success should bring extra social responsibilities, much in the same was that old-fashioned aristocrats used to believe that they had extra responsibilities to the commoners - "noblesse oblige". It was for this reason that many of the early pioneers of capitalism (Rockefeller, Carnegie, Harkness etc.) actually did spend much of their money on works of public philanthropy.

However, today's neoliberals and their meritocratic cousins seem much less interested in social or moral responsibility. Success is not an invitation to exercise social responsibility, it is merely the proclamation of the right of the powerful and rich to seek even higher rewards for themselves, and to look down their noses on those with less money or with different gifts. Liberalism and meritocracy merely justify growing injustice: encouraging the powerful to believe they are entitled to more money; encouraging the wealthy to believe they are entitled to more power. As shallow philosophies go we are scraping the bottom of a very deep barrel.

How did we get here?

How have we got here? How have we forgotten the lessons of the past? Why do we even begin to treat these crazy and wicked views as somehow reasonable points of view. Although I am a Christian I do not believe that declining faith or moral standards is the best explanation. In fact countries like the USA, which have a very high rate of Church attendance, also seem to be just as morally confused as the agnostic UK. We will find better explanations I think if we look at the economic, social and political characteristics of our society.

I also think that, despite the fact that things are currently getting worse, there are several reasons to be hopeful. Social and economic changes are themselves driving us towards a crisis point that might ultimately be very helpful, although how quickly this change will take place is unclear. Although the rise of liberal and meritocratic thinking is a growing threat, I think there remains a stubborn awareness of older truths that hard to dislodge from the human soul:

Justice lives in poverty.
She survives.
She measures
What is necessary.
She honours what ought to be honoured.
She seeks out clean hearts, clean hands.
She knows what wealth and power
Grind to dust between them.
She knows
Goodness and the laws of heaven.

Aeschylus: Agamemnon

In fact, even when our leaders try to exploit liberal and meritocratic prejudices they can only go so far, and often they try to manipulate language and statistics in order to cover their tracks. This tells us that not all hope is lost; there is no need for deception if all truth is gone.

What we find in practice is that modern politics is a little like street magic. The performer wants us to look in one place, while what is really important is happening somewhere else. In fact I think we can spot at least 10 myths that are commonly exploited to put our moral conscience to sleep:

1. Inequality is good for the economy

2. Growth is good for everyone

3. The welfare state protects the poorest

4. The rich pay the highest taxes

5. Only the poor need benefits

6. Benefits are often claimed fraudulently

7. People are too dependent on benefits

8. The benefit system is too expensive

9. Government has tried to protect the most vulnerable

10. There is no real poverty in the UK

I want to use this essay to not only challenge these myths, but more importantly to try and show how the use of these myths performs a useful social function for the political system. Ultimately I believe that, for all the worthy discussion about poverty reduction in the UK (from across the political spectrum) there has been no meaningful commitment to reduce poverty for over 40 years. This means that those of us who care about equality and social justice may need to think differently about our goals and our strategies.

1. Inequality is not good for the economy

Liberals will often argue that inequality is a natural part of the economic order and that if we want the benefits of a developing free-market economy then we must accept that inequality will naturally arise. Moreover they also argue that interfering with the labour market will have negative consequences. However, as Figure 1 show, if we look at the growth rate in the UK it has not increased as the UK has become a more unequal country, if anything it has declined.

In fact inequality has not benefited the economy and there are many ways of combining economic freedoms with social justice, primarily through redistribution and other social and economic policies.

2. Growth is not good for everyone

Another common proposition is that we should not care about equality, just about growth. If an economic policy raises the standard of living of everyone then the fact that some people benefit more is irrelevant. But, as we have seen, the opposite is true - inequality seem to reduce growth. So what we should really pay attention to is who does benefit from economic growth.

The following data is all taken from the Office for National Statistics, who publish detailed information on the family (household) incomes for every year from 1977 onwards. This allows us to compare how the incomes of different groups changed between 1977 and 2014. We can compare and contrast these incomes more effectively by bring them into line with the values for 2014. Figure 2 shows how incomes had changed - before any redistribution by tax or benefits - between 1977 and 2014. I have adjusted the data from 1977 to bring it in line with the data from 2014 by showing how income distribution for households would look if 1977 had the same average household income as households did in 2014.

We can see that relatively only the top 20% of families have really benefited from economic change during this period (although there is also a tiny uplift for those in the second decile). So, broadly, we can see:

the poor have got poorer

the rich have got richer

the middle has got a lot poorer

So, during the post-1977 period growth has declined (as per Figure 1) and economy has skewed the benefits of that reduced growth to the better off. This means the poorest are losing twice: lower growth and higher inequality.

3. The welfare state is not protecting the poorest

It is often assumed that the welfare state almost automatically benefits the poorest most. However, as we shall see, the reality of the welfare system is not quite what people believe. The welfare state's primary direct impact comes in three forms:

benefits - increased income

taxes - reduced income

services - increased income for its employees, reduced costs for those with needs

Now if we compare the incomes after taxes and benefits between 1977 and 2014 as we do in Figure 3 we can see that, rather than increasing the incomes of the poorest, the system's function has been to increase the incomes of middle-earners.

This means that we should be very careful to examine two very different kinds of impact on family income. Some of these changes seem to be economic. We can see a significant drop in the incomes of almost all groups, except the wealthiest 20%. However we can also see that tax-benefit policy during this period has been engineered to bring about changes that are just as significant as the economic changes. In fact it looks very much like, as the economy has depressed middle-incomes so the tax-benefit system has been used to reflate them.

Because the poor were already so poor and the rich were already so rich the changes are best understood using percentages and ratios. So here are some key facts:

Before tax and benefits the income of the richest 10% was 18 times higher in 1977 and 27 times higher in 2014.

After tax and benefits the income of the richest 10% was 7 times higher in 1977 and 13 times higher in 2014.

Economic changes reduced the income of the poorest 10% by 15% between 1997 and 2014

Policy changes reduced the income of the poorest 10% by 26%

Middle income groups all lost income because of economic changes, the most extreme group being the 4th decile, who saw their income reduce by 29%

However middle income groups saw their incomes increase because of policy changes that increased their benefits and reduced their taxes, with the 4th decile benefiting by a 26% increase in their income

The rich saw a huge growth in their income of 31%, but a modest reduction by policy of only 8%

It is these facts that explain the focus by politicians on the 'squeezed middle.' However it is not that the middle has been squeezed by the poor or by economic policies that support the welfare state. Instead most of the tax-benefit system is focused on increasing the incomes of those in the middle. In fact as we can see in Figure 4 and Figure 5, between 1977 and 2014 income has been taken off the poorest and redistributed towards the middle.

What is really going on is a fundamental change in the structure of the economy. Growth continues, but the beneficiaries of growth are getting fewer - basically only the top 20%. The welfare system is not primarily being used to benefit the poorest, it is primarily organised to support the middle.

4. The poor pay the highest taxes

One of the biggest deceptions of everyday political rhetoric is the use of the term 'taxpayer.' The term is often used to imply that there is some group, the better-off, who are somehow contributing the most, and that the poorest are in someway not taxpayers. This deception relies on pretending that the only significant tax is income tax - but this not true. Income tax is the biggest tax the richest pay, but for others indirect taxes, like VAT, are much more important.

For the following figures I have primarily used the latest ONS data (ONS, 2017). So, if we take all the taxes people pay, and then compare it to their total income then the group that pays the highest rate of tax is the poorest 10% of families - who pay more than 10% more in tax than any other group.

The reason for this is that the UK tax system is regressive - which means it hurts the poorest most - because it relies to such a high degree on indirect taxes, taxes on spending, not on income. Figure 7 compares the detailed breakdown of taxes paid between the poorest 10% and the richest 10%.

5. We're all on benefits

A similar deception is that only the poor are 'on benefits.' Nothing could be further from the truth. Every group benefits from benefits and the poorest do not even benefit the most. In fact it would truer to say that we're all on benefits and that the primary beneficiary of benefits is the middle-income earner. However this deception is maintained by treating some benefits, like tax credits and pensions, as if they are not really 'benefits.' This serves to aid the natural desire of the better-off to see themselves as somehow distinct from those relying on Job Seekers Allowance or Employment and Support Allowance.

6. Benefit fraud is utterly insignificant

Another common lie is that benefit fraud is a significant problem. In fact, benefit fraud is very low indeed. It is dwarfed by tax fraud and even more by tax avoidance (the legal but immoral effort to avoid your social responsibilities). The fact that the public seem to believe benefit fraud is so much greater must have something to do with the way in which politicians and the media have exploited an image of some people in society as being somehow particularly unworthy. This problem certainly began before Austerity as it was the new Labour Government who launched the 'Benefit Thieves' campaign which pandered to this non-existent social problem.

48.3% on pensions - a basic income for all people of retirement age

12.4% on housing and council tax benefits - compensation for the unequal distribution of property

11.1% on tax credits - compensation for the collapse of middle-income wages

6.2% on child benefit - a basic income for nearly all children

One very striking statistic is that the poorest not only pay lots of tax, mostly indirect taxes like VAT, but they also pay a significant level of income tax. This is surprising because their incomes are so low they should not be paying any income tax. However, the poor have no accountants, and I suspect that the application of emergency tax rates for short-term work means that the government is actually defrauding the poorest by over-taxing them. In addition the £17 billion of unclaimed benefits could also be treated as a form of government fraud - creating a system so complex - no one knows what they're entitled to.

What we must ask is who benefits from this kind of rhetoric. It certainly provides a useful distraction from the real issues, including growing inequality. Perhaps there is a sense in which this is a further price of a declining middle-class. As incomes drop, status is threatened. Perhaps, as well as propping their income through tax and benefit changes politicians are pandering to the need of middle-income earners to feel morally superior to those who are poorer. I suspect the negative skiver, scrounger, fraudster rhetoric is really the mirror image of the as 'hard-working families' 'the squeezed middle' or 'alarm-clock Britain'. The rhetorical purpose is to divide us and delude us. Money is transferred from the poor to the middle, but stigma is added to the poor to make the middle feel less bad about this act of theft.

7. People are not too dependent on benefits

Another common fallacy is that the benefit system is primarily about supporting people who are out of work and that benefits need to be low in order to discourage people from becoming dependent upon them. But even a cursory glance at benefit spending destroys that myth.

Job Seekers Allowance (the UK's unemployment benefit) represents 0.7% of total spending. Whereas the four main benefits (nearly 80% of the benefit bill) are not even really directed to address poverty at all:

The poor are in no danger of becoming over-dependent on benefits. Instead the whole of economy is dependent on a significant level of income redistribution and social security simply to function. The shame is that the poorest are treated so poorly by that system - stigmatised and impoverished.

8. The benefit system is inexpensive

The UK's spending on the welfare state is higher than some countries and lower than others. It has remained at a fairly constant level over a long period. There is no reason to think that welfare spending is unsustainable; it is only unsustainable if we refuse to pay for what we think is necessary, and this just requires us to adjust taxation levels. Politicians like to pretend that there is some crisis in order to justify policies they believe will bring them electoral advantage. We should ignore them.

Often it is spending on benefits that is represented as the greatest and most unsustainable cost for the welfare state. What is more it is claimed that the poorest may have become dependent on these benefits and that cuts in services or income are necessary to get people 'off benefits' and into work. In fact the truth is much more interesting.

Changes that happen over time, such as the failure to update benefits, take place slowly, but have a very large impact over time

Changes in assessment and eligibility can move people out of entitlement, and for new people they will not know they have lost out

Technical changes or rationalisations can be presented as modernisations or improvements in targeting, even if they are primarily cuts

First of all, as we have already seen in Figure 6, the cost of benefits is hugely exaggerated by ignoring the fact that most benefits are paid straight back in taxes. If we calculate the net or real cost of benefits - after taxes we find that the cost of benefits is very low indeed: £27.8 billion or 1.4% of GDP.

Benefits are not even strictly government spending, they are a transfer payment, reducing one person's income through taxes and increasing another with a benefit. The fact that benefits are presented as government spending is really just a trick of accountancy. If instead we accepted that redistribution was an essential feature of a modern economy we would distinguish it much more clearly from public spending, such as the NHS and education. Currently we've got things the wrong way round; we treat redistribution as a somewhat dubious feature of the welfare state, rather than as its primary function.

9. Government often attacks the most vulnerable

public and private wage inequality has increased significantly

the tax-benefit system has increasingly been used to lift the income of middle-income earners

taxes target the poorest and benefits have not risen accordingly

A further rhetorical trope, that turns out to be a lie, is the idea that government will naturally and quite properly protect those in most need. This line has been particularly important during the Austerity period, although it is not an uncommon lie at the best of times. For instance, I have explored elsewhere, and at some length, how austerity policies targeted those on low incomes, and in particular disabled people with the greatest need. The UK Government's policies have been so shameful in this regard that the United Nations has openly criticised the UK for failing to meet its human rights obligations:

salary differentials have got worse

taxes have got more unfair

benefits have got worse for the poorest

but the system has got more generous in the middle

"The Committee is seriously concerned about the disproportionate adverse impact that austerity measures, introduced since 2010, are having on the enjoyment of economic, social and cultural rights by disadvantaged and marginalised individuals and groups. The Committee is concerned that the State party has not undertaken a comprehensive assessment of the cumulative impact of such measures on the realisation of economic, social and cultural rights, in a way that is recognised by civil society and national independent monitoring mechanisms (art. 2, para. 1)."

UN Committee on Economic, Social and Cultural Rights: Concluding observations on the sixth periodic report of the United Kingdom of Great Britain and Northern Ireland. 24 June 2016

I won't repeat all of my earlier analysis of the cumulative impact of the cuts here. However I will note, as shown in Figure 13, that one of the features of the welfare state that enables such deception is its complexity.

Complexity allows for various changes to go unnoticed or to be misunderstood:

The general rule of thumb in understanding political changes to the welfare state is not to look for fairness or rationality, but to try and identify where short-term political advantage lies. If the primary strategy is to provide tax-cuts to groups who will provide political support then making cuts at any point and by any means can be expected.

10. Poverty is a significant and growing problem in the UK

Poverty is not just political, it is also economic. The real situation is something as follows:

Over time inequality has increased as:

On a technical level I think this is also why the Gini Coefficient is a rather inadequate measure of inequality, because it gives too much weight to middle incomes. It makes much more sense to examine the discrepancy between the richest and the poorest, as Figure 14 does.

It is also important to ensure that in presenting data about poverty we do not fall into the trap of ignoring taxes. It is the post-tax and post-benefit data that is most important. So today, as Figure 14 shows, the UK has a very high level of inequality and a very high level of poverty. 6.5 million people must live on £51 per week after tax, to pay for all costs. This amount is totally inadequate and it is clear that even a modest tax increase for those on higher incomes could be used to radically increase the lowest incomes.

Personal debt, which is a cost that has to be served and which is pushed up as incomes drop, is expensive for the poor, but cheap for the rich.

Housing costs, which have risen as the social housing has been suppressed and mortgages cheapened, become a bigger burden for the poorest whilst for the homeowner or landlord the costs go down.

Growing energy bills, increased through privatisation, hit the poor harder than the rich, because we all need to heat our homes (although now some can't).

Lack of savings, growing job insecurity, lack of community resources, services or support and many other factors worsen the living situation of the poorest disproportionately.

This is why there are now 2,000 food banks in the UK. It is why mortality rates are falling for the first time since the creation of the UK. Poverty in the UK is severe, harmful and unjust - and completely unnecessary.

Redistribution and public services

So far I have restricted myself to three main factors in shaping poverty and inequality: income, tax and benefits. But there are other important factors, which are also subject to political influence, that also impact on poverty in the UK.

Positively the existence of free public services, like health and education, is a great leveller, although in practice there often great distortions in the distribution and quality of those services. Nevertheless universality that takes public services out of the money economy is generally very positive. The fact that social care remains highly means-tested is significantly regressive. The rich look after themselves and make no commitment to the public system, the poor often have to impoverish themselves further to ensure they are entitled to vital services.

It should also be noted that public services also create jobs, often very well paid jobs, for those with middle-incomes. This is worth considering when we examine the overall redistribution created by the welfare state. The poorest certainly benefit from public services, but society becomes more unequal when pubic services also increase wage differentials. In other words many middle-income earners have their income lifted twice, both through the tax-benefit system and by taking up work in public services. It is the poorest who lose out on both accounts.

This is not a criticism of public sector workers - far from it - it is just drawing attention to the strange way we think about income and public spending. If the Government increases the salary of a doctor this will be good for the doctor, but it makes no obvious difference to the service I receive and, from the perspective of equality, it is has made a bad problem worse.

Cost, debt and other complexities

The data that I have focused on here - incomes, tax and benefits - doesn't tell us about some other very important facts:

There is no excuse, as some in the Government plan, for reducing our focus on the economics of poverty. However we should take a holistic approach and ensure that we also look at the costs people have to pay. Moreover we should also examine the social conditions which make it even harder to bear the costs of poverty. real poverty might best be pictured as having several dimension, as set out in Figure 15.

declining trade union membership

declining church attendance

increased social atomism

declining social fabric in many communities

reduced level of political engagement

Personally I think we should move towards a more objective understanding of poverty, one which would enable us to eradicate poverty. I would define poverty as follows:

Poverty is the lack of all the resources necessary to participate as an equality in the life of the community

There is absolutely no reason why, by this definition, we cannot eradicate poverty from the UK.

Why does the system not care?

If we assume that politicians are not naturally unjust, but are primarily motivated by the desire to get re-elected, then there are a number of factors that may help explain recent developments.

In a two-party system, focused primarily on economic well-being, lifting the income of median-income voters is going to be critical. In addition you must disguise fact that you are doing so is also important (a) because you are failing to address the needs of people in the greatest need (b) benefits are stigmatised and those groups don't want to be confused with stigmatised groups. Hence systems like tax credits are used to provide a benefit with lower levels of stigma for middle earners.

Furthermore this explains the increasing use of stigma, sanction, conditionality and control for those in the lowest income groups. Increasing the negative stigma associated with those on the lowest income also increases both a sense of superiority and a sense of insecurity - I don't want to become like 'them'. Abusing the poor becomes part of the street magic as it distracts people from noticing that most government policy is about subsidising the middle.

It is also important to acknowledge the changing structure of our society. If the interests of those who are poorest are unlikely to be represented, if people themselves are unlikely to organise to protect their interests, then exploitation is inevitable. Some of the more obvious social changes include:

Poverty has been privatised. Without the necessary level of social solidarity and connectedness this situation is unlikely to change.

Although the current trend looks very negative I think there are some opportunities for positive change. The decline for middle-income earners which has helped erode our focus on poverty and inequality will increase. Technology and other economic changes is going to see more people, younger people, people in white collar jobs feel that the current system is unsustainable. You can only rob the poor for so long - they're too poor for the trick to last for ever.

I think many more people are going to be attracted to the concept of basic income as a solution which universalises income security. In a sense the interests of the middle and the poorest will - if this happens - start to coincide. This should be a good thing.

I also think that a growing number of us will realise that an economic model which assumes that the only valuable activities are measured by money will collapse. The attractions of family, love, citizenship and community do remain, even in a world impoverished by injustice and shallow thinking. As people begin to reconsider what is of real importance then we can also start to consider how best to build a world where everyone's gifts matter.

Meritocracy and neoliberalism will remain a threat to moral sanity. Things will not get better on their own. But we can unite around different values and use the emerging economic crisis as the basis for building something better.

The publisher is the Centre for Welfare Reform.

The Politics of Poverty © Simon Duffy 2017.

All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.

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Author: Simon Duffy Dr Simon Duffy explores the facts behind poverty and inequality in the UK. He argues that the current political system is not concerned with eradicating poverty and that current rhetoric about poverty and inequality largely serves to disguise the injustice of the current system.

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What are vertical and horizontal community engagement? | Sustaining Community

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What are vertical and horizontal community engagement? | Sustaining Community

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[Updated 21 July 2017]

The more I read and practice, the more aware I become of the many dimensions of community engagement. One of these dimensions is vertical and horizontal community engagement. At a seminar in 2012, Alison Mathie from the Coady Institute spoke about horizontal and vertical dimensions of citizenship. She suggested that:

1. Vertical citizenship involves active citizenship in terms of engagement with the state (e.g., voting, being involved in consultations)

2. Horizontal citizenship involves active citizenship through being engaged with the local community (e.g., volunteering, acting out civic duty, membership of local institutions).

I realised this was quite relevant to community engagement too, and when I looked into it more, I came across a great paper by Eileen Conn " Community engagement in the social eco-system dance". In a thought-provoking article, she draws on complexity theory (I've discussed complex problems and community engagement previously) to compare two different types of relationships:

1. Vertical hierarchical systems are found in formal organisations, and are based on authority and line management, and have clear structures. They are the types of relationships we are likely to experience at work.

2. Horizontal peer systems are found in neighbourhoods, groups of friends and other informal networks. These relationships are based on personal links, are informal and rely on mutual interest.

She suggests that we often fail to recognise these differences and that this can lead to significant challenges when the two types of systems interact. Of course, these types of relations aren't mutually exclusive. For example peer, horizontal relationships play an important role in formal, hierarchical organisations as well as in communities.

A few years ago I become more aware of the differences the approaches taken when I worked as a professional in engaging the community and when I was involved in helping to build relationships between neighbours as a community member (e.g. through Transition Streets and the Kids Vegies on the Verge.

While there are similarities, there are also significant differences. I found it helpful to think in terms of vertical and horizontal community engagement.

Vertical community engagement

Vertical community engagement is where government, business, or other organisations want to engage the community in consultation, decision-making or in some other aspect of their work.

Vertical community engagement is particularly associated with consultation and planning, and is generally initiated from the top down, even if a bottom up process is adopted. Examples might include a local council seeking community involvement in reducing energy use. A charity attempting to engage community members in a fund-raising initiative. A state government wanting community involvement in planning.

In terms of Conn's article, this is where the two types of relationship interact.

Horizontal community engagement

Horizontal community engagement is where people are engaged in their local community as active community members.

This type of community engagement is often associated with community building and community development. While it largely happens as a result of community interactions, the aim of many organisations and programs is to increase horizontal community engagement. Many voluntary community groups (e.g., sports clubs, environments groups) are also keen (if not desperate) to increase engagement with their local community and to have more people engaged.

It may help to think of vertical and horizontal community engagement as dimensions of community engagement rather than being totally separate approaches. While the processes used to encourage vertical community engagement are likely to be different to those used to enhance horizontal community engagement, many examples of community engagement involve aspects of both.
If you liked this post please follow my blog, and you might like to look at:

1. An introduction to community engagement

2. 10 things I've learnt about strengths-based community engagement

3. What are complex problems?

4. What is Transition Streets?

5. What is social capital?

6. Types of community engagement - creating boxes?

If you find any problems with the blog, (e.g., broken links or typos) I'd love to hear about them. You can either add a comment below or contact me via the Contact page.
About Graeme Stuart

Lecturer (Family Action Centre, Newcastle Uni), blogger (Sustaining Community), environmentalist, Alternatives to Violence Project facilitator, father. Passionate about families, community development, peace & sustainability.

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What are vertical and horizontal community engagement?

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Updated 21 July 2017] The more I read and practice, the more aware I become of the many dimensions of community engagement. One of these dimensions is vertical and horizontal community engagement. At a seminar in 2012, Alison Mathie from the Coady Institute spoke about horizontal and vertical dimensions of citizenship.

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Half of pupils expelled from school have mental health issue, study finds | Society | The Guardian

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Half of pupils expelled from school have mental health issue, study finds | Society | The Guardian

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Half of all pupils expelled from school are suffering from a recognised mental health problem, according to a study.

Those who are permanently excluded find themselves at a significant disadvantage, with only one in a hundred going on to attain five good GCSEs, which are often used as a benchmark of academic success.

The majority will end up in prison, says the study by the Institute for Public Policy Research, which estimates that of the 86,000-strong prison population, more then 54,000 were excluded at school.

The IPPR says its research lays bare the "broken system" facing excluded pupils. It flags up high levels of mental health issues among permanently excluded students - at least one in two, compared with one in 50 pupils in the wider population.

The thinktank also highlights the disadvantages such children face, as those excluded are four times more likely to grow up in poverty and twice as likely to be living in care. They are also seven times more likely to have special educational needs than those who are not excluded, the report claims.

After exclusion, the study says there is a downward spiral of underachievement, with teachers in schools catering for excluded pupils twice as likely to have no educational qualifications.

Kiran Gill, an IPPR associate fellow and founder of The Difference, which works to improve mental health provision for excluded pupils, described the system as "burningly unjust".

She said: "Theresa May says she is committed to improving the mental health of young people. Addressing the most vulnerable children being thrown out of England's schools is a good place to start. Because unequal treatment of mental health may be an injustice, but the discrimination of school exclusions is a crime.

" If the government is serious about real action on mental health, there needs to be dedicated funding and thought through solutions rather than sticking plasters on the symptoms of the problem."

The IPPR research was published before the government's latest annual figures on permanent and fixed period exclusions from schools in England in 2015-16, which is scheduled to be released on Thursday.

Responding to the report, the Department for Education said any decision to exclude should be lawful, reasonable and fair, and should only be used as a last resort in response to serious breaches of a school's behaviour policy.

"This government is committed to working with local authorities and schools to ensure children in alternative provision receive a high quality education," a DfE spokesperson said.

"We are strengthening the links between schools and NHS mental health staff and have announced plans for every secondary school to be offered mental health first aid training. Later this year we will publish a green paper with proposals for further improving mental health services."

In the UK, Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Hotline is 1-800-273-8255. In Australia, the crisis support service Lifeline is on 13 11 14. Hotlines in other countries can be found here

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Half of pupils expelled from school have mental health issue, study finds

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Half of all pupils expelled from school are suffering from a recognised mental health problem, according to a study. Those who are permanently excluded find themselves at a significant disadvantage, with only one in a hundred going on to attain five good GCSEs, which are often used as a benchmark of academic success.

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La permaéconomie : le biomimétisme pour sauver la planète

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La permaéconomie : le biomimétisme pour sauver la planète

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Vincent Lucchese

Les scientifiques, industriels, étudiants et politiques réunis à Senlis (Oise), les 29 et 30 juin 2017, n'avaient tous qu'un mot à la bouche : biomimétisme. Le Ceebios (Centre européen d'excellence en biomimétisme de Senlis) y accueillait la deuxième édition du Biomim'expo. Vivier d'emplois, catalyseur d'innovation, espoir pour la planète, renouveau sociétal... chacun projette son graal dans ce concept florissant de biomimétisme, ce processus d'innovation consistant à s'inspirer des formes, des matières et des fonctions du vivant. Nous avons profité de cet évènement pour rencontrer Emmanuel Delannoy, fondateur de l' institut Inspire et auteur de l'ouvrage Permaéconomie (Wildproject, 2016). Il nous explique comment renouer avec une Terre viable, et médite également sur l'effondrement et les plumes des dinosaures.

L'ancienne caserne militaire grouille d'enthousiasme et d'utopies en devenir. Dans les stands ou sur la scène du salon Biomim'expo, chaque participant rêve de révolutionner son secteur économique, voire de sauver la planète, grâce aux leçons tirées du système digestif de telle bestiole des sous-bois ou aux découvertes liées à la structure de la peau de telle créature marine. " Si la nature est une bibliothèque, chaque espèce est une livre à déchiffrer ", nous disait le spécialiste en neurosciences Idriss Aberkane. Ici, à Senslis, c'est l'exploitation foisonnante de cette idée qu'est le biomimétisme : s'inspirer des 3,8 milliards d'années de recherche et développement du vivant sur Terre pour améliorer la technologie.

Superglue des moules et oreilles de mouche

Marianna Braza, de l' Institut de mécanique des fluides de Toulouse, explique comment les oiseaux lui ont inspiré des polymères électroactifs et des alliages à mémoire de forme pour rendre les ailes d'avion plus performantes en vol, réduire les turbulences et la consommation de carburant. Vincent Cognet, du Laboratoire de physique et mécanique des milieux hétérogènes de l' ESPCI Paris, étudie quant à lui le vol des insectespour améliorer les éoliennes.

Derrière les stars du biomimétisme, comme la super-crevette et la taupe immortelle, le salon expose la foule à une multitude de publications scientifiques sur le sujet. " Superglue " inspirée des moules, panneaux solaires inspirés du papillon morpho, matériaux inspirés des toiles d'araignée, système auditif inspiré des oreilles hypersensibles de mouche... Au-delà des exemples d'innovations techniques, le biomimétisme peut aussi faire émerger des concepts globaux et changer nos modes d'organisation. C'est justement ce que propose Emmanuel Delannoy avec la permaéconomie.
Usbek & Rica : Comment définiriez-vous le concept de permaéconomie ?
Emmanuel Delannoy : C'est une extension et une transposition des principes de la permaculture à l'ensemble de l'économie. Comme la permaculture est une agriculture permanente, la permaéconomie est une économie permanente, qui entretien les conditions de sa pérennité. En réinvestissant non seulement dans l'outil et les équipements, mais aussi en prenant soin de l'humain, de l'individu, de la société, de la nature et des écosystèmes, de ce qu'on appelle le " capital naturel ".
Ces principes peuvent-ils être mis en oeuvre grâce au biomimétisme ?
En fait, la permaéconomie est déjà en soi un concept biomimétique. Il s'agit de réintégrer les flux de l'économie dans les flux de la biosphère. Le biomimétisme peut être appréhendé à différents niveaux. Comme outil, d'abord, dans les procédés de fabrication industrielle, à travers des composantes comme l'économie circulaire ou la conception durable des biens. Ça passe par l'utilisation de matériaux du futur, de revêtements bioinspirés, de la chimie verte... Je pense, par exemple, aux travaux de Jacques Livage, qui permettent de fabriquer du verre à température ambiante en mimant ce que font les diatomées et les éponges, au lieu d'utiliser des fours à 1 000°C. On aboutit au même résultat, mais avec une grande économie de moyens et d'énergie.

Le biologiste Jean-Marie Pelt disait : " Dans la nature, la coopération crée, la compétition trie "

Au niveau du dessus, le biomimétisme consiste à mimer les organisations des écosystèmes. À recréer des écosystèmes en symbiose, dans lesquels les acteurs échangent de l'information, des flux, de la matière, de l'énergie, etc. Il y a ici un lien important avec la thermodynamique, qui dit que dans un système complexe, plus les échanges d'information entre les éléments du système sont importants, plus le système est efficient dans l'utilisation de l'énergie, et mieux il aura tendance à conserver son énergie. Dans les écosystèmes naturels, l'information est vraiment prépondérante, à la fois entre individus d'une même espèces et entre individus d'espèces différentes. On cherche à mettre en place des systèmes de production plus efficients en s'inspirant de ces modèles naturels.

Gros plan sur des diatomées, ces végétaux unicellulaires aquatiques qui ont inspiré les travaux de Jacques Livage.

Le biomimétisme peut nous rendre plus économes et efficients, mais aussi changer nos façons d'innover.
Encore à un autre niveau, le biomimétisme concerne la biologie de l'évolution. L'évolution répond à certains processus dont on pourrait s'inspirer pour innover. Le biologiste Jean-Marie Pelt disait : " Dans la nature, la coopération crée, la compétition trie ". Les vraies ruptures biologiques sont d'abord affaire de symbiose. Par exemple, les cellules eucaryotes dont nous sommes tous faits sont nées il y a plusieurs millards d'années de l'absorption par une cellule d'autres organismes spécialisés, qui sont devenus les chloroplastes chez les plantes et les mitochondries chez les organismes hétérotrophes comme nous. La fusion d'organismes initialement distincts a permis l'évolution multicellulaire. La coopération crée du neuf, dans la nature comme dans l'économie.

" De la même manière que la permaculture tire partie de la biodiversité, on peut créer de la valeur en tirant le meilleur parti des compétences et aspirations des individus "

L'autre point important pour l'innovation, c'est ce que les biologistes et paléontologues appellent " l'exaptation ". C'est-à-dire l'utilisation de structures, de compétences ou de processus existants à des fins radicalement différentes de leurs fonctions d'origine. Certains dinosaures avaient des plumes, ou protoplumes, qui leur servaient d'isolants thermiques. Quand ces dinosaures sont devenus des oiseaux, ces plumes, en changeant de forme, sont devenues des accessoires indispensables au vol. L'exaptation peut être très utile dans un monde qui a besoin d'une transition rapide. On pourrait, par exemple, utiliser les colonnes d'eau sous pression, présentes dans les immeubles pour la sécurité incendie, pour en faire des réservoirs d'inertie thermique, chauffer les immeubles et faire des économies d'énergie.

Vue d'artiste d'un dinosaure à plumes, le théropode, qui foulait la Terre il y a 99 millions d'années. Il était pourtant incapable de voler... (© Chung-tat Cheung)

Le biomimétisme peut-il encourager des ruptures au-delà de l'économie, aider par exemple à repenser les modes d'organisation sociale ?

Le principe d'interdépendance des individus apporte une nouvelle conception des rapports entre êtres humains, ainsi qu'entre humains et êtres non humains. Ça rejoint le concept africain d'ubuntu : chaque individu se façonne à travers ses interactions avec les autres et dans leur histoire collective. C'est vrai au niveau des sociétés, des organisations sociales comme industrielles. De la même manière que la permaculture tire partie de la biodiversité en place et de ses spécificités, on peut créer de la valeur en tirant le meilleur parti des compétences et aspirations des individus. Révéler les potentialités humaines plutôt que les contraindre. C'est le principe des entreprises libérées. Il y a une anecdote assez marrante à ce sujet : un vieil ouvrage d'agronomie du XVIIIe siècle s'intitule " Le ménage des champs, ou le nouveau jardinier françois ". Cette notion de " ménage " signifiait à l'époque : accompagner les mouvements, détecter les potentialités. Le ménagement est devenu management en anglais et a aujourd'hui une connotation beaucoup plus directive. L'idée est de retrouver le sens premier du ménagement.

" L'humanité n'est pas une histoire de cases et de structures mais d'abord une histoire d'interactions et d'émergences à partir de ces interactions "

À plus longue échelle, votre propos rejoint un peu ce que disent des auteurs comme Yuval Noah Harari ou Alain de Vulpian : nous pourrions retrouver un mode d'organisation social originel, plus organique et complexe ?
Oui, le bouquin d'Harari est très intéressant sur la façon dont l'émergence d'une société plus structurée et codifiée l'a rendue plus rigide, alors que la capacité du cerveau humain à appréhender la complexité est native, puisque c'est un héritage de nos ancêtres chasseurs-cueilleurs. Ils vivaient dans un monde complexe, n'avaient pas les outils techniques ni la connaissance pour appréhender chaque élément dans son détail, mais avaient une bonne vision du fonctionnement global du système dans lequel ils vivaient et interagissaient. Notre culture industrielle et notre éducation nous a fait rentrer dans des habitudes de cloisonnement des choses. Il faut une nouvelle éducation à la complexité. On a besoin de passeurs, de connecteurs, de gens qui vont relier les savoirs, les concepts et les domaines académiques qui ont tendance à poursuivre leur développement de manière séparée. Il y a déjà une prise de conscience progressive là-dessus. Mais je pense qu'il faudrait former dès la primaire, voire la maternelle, à cette complexité. L'humanité n'est pas une histoire de cases et de structures, mais d'abord une histoire d'interactions et d'émergences à partir de ces interactions.

Yuval Noah Harari, l'auteur du best-seller Sapiens : une brève histoire de l'humanité. Crédits : Richard Stanton

La technologie peut-elle être le catalyseur de ces transformations ?

Elle peut être un élément facilitateur comme un frein. Si on se repose entièrement sur la technologie, on perd la valeur ajoutée proprement humaine. En revanche, on peut considérer que nos cerveaux ne sont pas là pour accumuler de l'information mais pour faire les liens et amener de la créativité. L'information peut être stockée dans les machines pour libérer le potentiel créatif de nos cerveaux et les connecter entre eux. L'intelligence artificielle peut avoir un rôle positif si elle est le support de tout ça.
La permaéconomie est-elle un moyen de réconcilier croissance économique et écologie ? Ou au contraire un façon de penser un monde post-croissance ?
Le seul moyen de retrouver une certaine durabilité, c'est de décroître radicalement, dans des proportions extrêmement importantes, sur les flux de matière et d'énergie. On sait très bien que l'humanité dépasse largement les capacités physiques et biologiques de la biosphère depuis trente ans. D'une année à l'autre, on accumule de la dette. On a aussi besoin de créer de l'emploi, de mieux répartir les richesses et d'en créer probablement plus qu'aujourd'hui. Mais ce sont des richesses au pluriel, qui peuvent aussi être non monétaires. Décroître peut être compensé par une meilleure coopération, une meilleure circulation de l'information et une valeur ajoutée déconnectée des flux de matière et d'énergie. Ça repose typiquement sur des sujets comme l'économie de la fonctionnalité et de la coopération, sur lesquels on travaille.

" Les crises biologique et climatique ont un très gros effet d'inertie. On va accumuler de très mauvaises nouvelles dans les années à venir "

Ce changement radical de paradigme vous semble-t-il atteignable dans les temps, avant que les points de rupture écologiques ne nous mènent à l'effondrement ?

Je fais un pari pascalien à l'envers, pour le coup : mieux vaut parier sur le fait que l'effondrement sera là, mais on ne sait pas quand. Car plus on y sera préparé, plus on pourra amortir le choc et rebondir rapidement. Mais attention à ne pas trop être fascinés par l'effondrement, comme certains qui l'espèrent pour enfin pouvoir reconstruire autre chose. On oublie que le coût humain de l'effondrement sera absolument dramatique, et on aura une très lourde responsabilité dans tout ça.

Illustration : Martin Driver

Cet effondrement vous semble en tout cas inéluctable ?

L'espoir est de plus en plus limité. Les crises biologique et climatique sont dramatiques, avec un très gros effet d'inertie. Je pense qu'on va accumuler de très mauvaises nouvelles dans les années à venir sur le plan écologique. Il va malgré tout falloir que les initiatives citoyennes et les innovations conservent leur enthousiasme, leur énergie et s'accélèrent. On a aussi des signaux extrêmement intéressants d'innovation depuis quinze ans et la tendance devrait se prolonger. Il y a une double vitesse en ce moment, une tectonique des plaques entre les logiques sociales et les logiques écologiques, qui vont devoir se réajuster. Je pense que la grande difficulté sera de ne pas sombrer dans le déni ou le découragement, sans pour autant penser que tout va bien se passer et qu'il n'y aura pas d'effort à faire.
SUR LE MÊME SUJET :
> Une raie manta pour reconnecter l'architecture et la nature

> La super-crevette d'Idriss Aberkane

> Pablo Servigne : " Je défends un catastrophisme positif "

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" Le coût humain de l'effondrement sera dramatique "

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Vincent Lucchese Les scientifiques, industriels, étudiants et politiques réunis à Senlis (Oise), les 29 et 30 juin 2017, n'avaient tous qu'un mot à la bouche : biomimétisme. Le Ceebios (Centre européen d'excellence en biomimétisme de Senlis) y accueillait la deuxième édition du Biomim'expo. Vivier d'emplois, catalyseur d'innovation, espoir pour la planète, renouveau sociétal...

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Demonstrators in wheelchairs blockade House of Commons in protest at disability cuts"Many disabled people with high support needs have had their care packages cut between 20 to 60 per cent and are facing a bleak future in residential care or imprisoned at home, excluded from society,” she said.

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Demonstrators in wheelchairs blockade House of Commons in protest at disability cuts"Many disabled people with high support needs have had their care packages cut between 20 to 60 per cent and are facing a bleak future in residential care or imprisoned at home, excluded from society,” she said.

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Protesters in wheelchairs have attempted to blockade the entrance to the House of Commons in protest at cuts to disability benefits.

The demonstration took place as MPs attempted to exit the chamber following Prime Minister's Questions. Eight people in wheelchairs positioned themselves in front of the doors into the Commons.

They chanted "no justice, no peace" and demanded to speak with MPs, saying they were campaigning aganist cuts to social care and the Independent Living Fund.

Two of the protesters, who are believed to be part of the Disabled People Against Cuts group, began chanting "Ohh Jeremy Corbyn" as the Labour leader walked past.

The protest took place in Parliament's Central Lobby, in front of doors that lead to the Commons chamber. There are other routes to the chamber, meaning MPs were still about to get in and out of the room.

Police formed a protective cordon as protesters chanted: "This is a message to Theresa May: while we have no justice, you will have no peace" and "No more deaths from benefit cuts".

46-year-old Paula Peters, a member of the national steering group of Disabled People Against Cuts (DPAC) told The Independent she was in the Palace of Westminster to protest against the closure of the Independent Living Fund in 2015.

"Many disabled people with high support needs have had their care packages cut between 20 to 60 per cent and are facing a bleak future in residential care or imprisoned at home, excluded from society," she said.

"I tell this Government now, disabled people will fight for their rights till the last person in their wheelchair to the last disabled person in this country. We are being treated horrifically under this Government. We have borne the brunt of austerity nine times more than any other group."

Asked what was the aim of blocking the Commons entrance, she responded: "Our rights were never handed to us. We fought for our rights.

"We are doing this kind of action to raise awareness of what this Government is doing to disabled people in the UK. We want the world to know what the UK Government is doing to disabled people. In the 21st century, the fifth richest country on earth - they are killing disabled people in large numbers. Our rights are being eroded. We want that to stop.

"We don't take this action lightly. We feel we have no choice by a Government that is refusing to listen to us, is not interested in listening to us, who just wants to keep cutting and cutting and cutting until there is nothing left to cut.

"Theresa May had her magic money tree for the DUP... we say enough. We want this stop."

A second campaigner, Victoria, a 29-year-old with disc degenerative disease and epilepsy, echoed the comments regarding the Prime Minister's deal with the Northern Ireland party in a bid to cling to power following the general election last month.

"At the moment, obviously, the fact of all this money given to the DUP at the moment when we were told about a 'magic money tree', she said. "Yet they have been taking money away from disabled people".

Reuse content

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Protesters in wheelchairs block MPs' entrance to House of Commons over disability benefit cuts

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Protesters in wheelchairs have attempted to blockade the entrance to the House of Commons in protest at cuts to disability benefits. The demonstration took place as MPs attempted to exit the chamber following Prime Minister's Questions. Eight people in wheelchairs positioned themselves in front of the doors into the Commons.

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Reimagining professionalism in mental health: towards co-production is a seven part ESRC seminar series which focuses on developing new approaches to professionalism in mental health.

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Reimagining Professionalism in mental health: towards co-production

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Book Review: The Field Study Handbook, by Jan Chipchase - EPIC

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Book Review: The Field Study Handbook, by Jan Chipchase - EPIC

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by TOM HOY, Stripe Partners

Jan Chipchase has done something few of us would dare: write down his trade secrets and give them away in a book. In The Field Study Handbook he shares hard-earned lessons from running ethnographic research projects across the world.

At face value the Handbook delivers on its promise. It lays out, often in painstaking detail, the nuances of how to stage a successful project. Everything from costing a proposal and folder-naming strategies, through to how to seat a team during a fieldwork interview and make an impact with your deliverables. But importantly, it also communicates a human, sometimes esoteric perspective about why we choose to do this kind of work in the first place. And it is this that elevates the book from a useful how-to guide to something more vital and existential.

Sharp insights can be found on most pages, particularly in relation to the author's true passion - running projects 'off the grid' in developing countries. The text is at its best when Chipchase relates how fine-grained cultural distinctions should shape our research practices, to enhance our understanding but also because it is more ethical to do so. It is to his credit that a deep respect for the subjects he studies resonates throughout the book.

"For highly financially constrained participants, where the session is like to overlap with mealtimes, bringing food as a gift can be appropriate. In situations where the family doesn't have access to refrigeration, ensure that the food can be eaten in one sitting."

Given the personal style, Chipchase focuses on describing methods that have worked in his own experience. He is less interested in situating his wisdom within the wider canon. As a practical guide it is understandable that there is not more theoretical context. This said, a wider bibliography would contribute a richer depth of field, and help the reader navigate the commercial and academic traditions he draws on.

Overall the accessible nature of the Handbook means experienced commercial ethnographers will feel reassured and re-orientated by much of the methodological advice, rather than surprised by it. What makes it a worthwhile purchase for even the most jaded researcher is the care for the craft that bleeds from every page. And this is perhaps the highest praise I can give it: reading it makes me feel proud of what I do for a living.

Chipchase has deliberately pitched the Handbook at a wide audience to support a proselytising mission. He wants to democratise the ethnographic skillset in a world increasingly at sea in rootless data.

"Whether you are a computer scientist, researcher, designer, strategist, or engineer, what does it take to truly understand your data? ...This book will show you how to develop the skills to find true insight in the field, and to apply it to affect what people think and what they do."

This is a message that won't be welcomed by everyone. For some researchers, democratisation represents a threat. It calls into question the value of professionals, eroding belief in our expertise. If anyone with this book can be a researcher, then why pay over the odds for a specialist? Chipchase's answer is to subtly suggest that although anyone can do research, mastery of the art is something else entirely.

"Anyone can start conversation and ask questions, but it takes years of experience to become proficient in guiding but not leading an interview."

This is a clever move: opening-up the practice to everyone, while simultaneously revealing the skill and complexity of doing it well. Popping the bonnet on the fieldwork process also communicates a confidence about the value of the work. Transparency is a clear and welcome theme of the book. Why obfuscate, he seems to ask, unless you've got something to hide?

"Confront the true motivations for why you want to run a field study. Upfront honesty affects all downstream activities."

The Handbook is also another demonstration of Chipchase's undoubted skill as a marketer. He has always appreciated perhaps the most powerful strategy for promoting ethnography: make it glamorous. And position it as far from the staid world of Market Research as possible. In the process, no one has done more to make our work look and feel exciting to outsiders and insider alike.

It is no coincidence that during the successful Kickstarter campaign the Handbook could be purchased in combination with bags from his boutique luggage brand SDR Traveller, or with 'field trips' to exotic destinations in China and Japan. There is a distinct knowingness to everything that Chipchase does, but like any trailblazer the irony is never explicit - to betray as much would be to dilute the vision. Drawing from the approach of smart lifestyle brands, Chipchase is building a rich, distinctive world that people aspire to be part of.

Although some purists may dismiss this as a dilution of our practice, there are arguments for making ethnography both accessible and aspirational that extend beyond raising its profile. As we argued at EPIC last year, enrolling non-practitioners as active participants in the research process can fundamentally enhance their level of understanding, and the subsequent impact of the project. Chipchase calls these 'Soft Deliverables'; the ineffable value that is imbued through directly participating in fieldwork.

It is right to celebrate the transformative power of our work, but Chipchase notes a tendency for practitioners to overstep the mark and "assume project success translates to the overall success of the whole [system]". Despite the temptation, we shouldn't claim that one project can drive complex changes singlehandedly.

This doesn't mean we should lack ambition as a community, but rather reflect on our collective approach to promoting our work. Within organisations, talk of impact is still dominated by positivist, number driven language. Despite our sophisticated arguments for widening the vocabulary, it is perhaps a dialect we will always struggle to be entirely persuasive in. Chipchase teaches us that to grow our influence we need to move beyond rational arguments. Ethnographic work must appeal to the heart as well as the head. Because if marketing demonstrates anything, it's that investment follows the emotional before the rational.

In promoting the Handbook on Kickstarter Chipchase states, "I wanted to create an artefact. A beautiful thing that takes up space in your life, and nudges you with its presence." At $125, the Handbook is undoubtedly a luxury item, seemingly targeted at a niche audience. But the book defied all expectations and raised over $330,000 on Kickstarter, reaching a wider market than anticipated. The real lesson of the Handbook then may not be contained in the excellent guidance it affords, but in the controversial dynamic it reveals: the success of ethnography as a Veblen good.
The Field Study Handbook by Jan Chipchase, illustrated by Lee John Phillips. Field Institute, 2017.
Tom Hoy is Co-Founder of Stripe Partners, a global insight and innovation consultancy that helps organizations develop 'Embodied Strategies' through their collaborative Studio approach. Over the last 10 years he has continuously experimented with research methodologies across a range of organizational settings. Outside of Stripe Partners Tom developed the Made In Lambeth innovation network in London, bringing together multidisciplinary teams to support local causes. His training in social sciences started at the London School of Economics.

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Book Review: The Field Study Handbook, by Jan Chipchase - EPIC

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by TOM HOY, Stripe Partners Jan Chipchase has done something few of us would dare: write down his trade secrets and give them away in a book. In The Field Study Handbook he shares hard-earned lessons from running ethnographic research projects across the world. At face value the Handbook delivers on its promise.

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The funding politics behind Transforming Care - Dimensions

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The funding politics behind Transforming Care - Dimensions

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On Tuesday 13 September at 8pm, our Chief Executive, Steve Scown, was on Radio 4 discussing Transforming Care. In this blog he discusses conflicts of interest for those leading the programme.

Rachel* has had a difficult life. Profoundly deaf, and with very little sight, her mother was ill with Rubella whilst pregnant.

Until recently she has been stuck in a health-run ATU, with costs paid for by health, under the responsibility of her local Sensory team. But recently her diagnosis changed, from developmental delay to learning disability. This enabled her to access different funding and she was referred to Dimensions.

Without any doubt in my mind this nimble footwork helped get Rachel out and she is really thriving with our support. Her story got me thinking again about the politics of funding, and how this can both positively and negatively impact on people's lives.

If you listen to File on Four on Radio 4 you'll hear how Transforming Care has missed its trial target. NHS England has admitted community services aren't good enough, and could risk the £130m programme not achieving its ambitions.

I believe that short term investment funding - sustaining existing whilst investing in preventative community-based services is required.

Steve Scown, CEO

Rachel's life is certainly better now. But what about fictional John?

John has a learning disability and lives with his parents, who support him. He's going through a rough time and his parents ask the local authority for help.

What John and his family really need is flexible, responsive, local, expert support. But this support isn't there, his situation at home deteriorates and John is referred to an Assessment and Treatment Unit (ATU.) Not because he has a health need that needs treatment but because the right support wasn't available in the community. A place at the ATU is. Now, John's support is funded in whole or in part by Health.

Or consider similarly fictional Peter. Peter has been living in an ATU for two years, but there's no longer any reason for him to stay locked up. He could be supported to live in the community - he's desperate to get out and have a life.

Everyone who is important in Peter's life knows this and wants this to happen. In three more years, the Health dowry will kick in (why five years? Dimensions, along with others, has previously proposed a reduction from five to two) and health funding will be added to Peter's funding pot.

If Peter leaves the ATU now, his local authority will have to pick up the whole cost of his support, and his current provider will have an empty bed. Do you think that if the money to fund Peter's services was controlled by his family, or an organisation acting on his/their behalf, that he would be in a minute longer than necessary? We could always call that a personal budget...

Too cynical? Put yourself in the shoes of an under-funded social care commissioner faced with balancing impossible demands on budget and service provision. In the cases of both Peter and John, there's no chance of their funding being redirected to community based preventative support - it is necessarily committed to sustaining current services and packages.

I believe that short term investment funding - sustaining existing whilst investing in preventative community-based services is required. We know community-based services are not only better in terms of quality of life and outcomes, they are cheaper as well.

My cynicism is backed up by the data. 64% of inpatients have been in the same hospital for a year or more - hardly "assessment and treatment." And this understates reality, as it ignores transfers.

Of new admissions to hospital in July 2016, just 15% had a pre-admission Care and Treatment Review (which would oblige a discharge plan to be put in place.) Of the 85% who did not receive a pre-admission CTR, 85% had also not had a post-admission CTR at time of data collection (A CTR should be completed within 10 days following admission).

Looking more broadly, at all inpatients, just half had a CTR within the allotted six month timescale; fully 28% had not had one in the preceding year. And the position is getting worse; a year previously, 77% had had a review in the allotted timescale.

The HSCIC data also reveals that 70% of inpatients' care plans say they need inpatient care; 30% do not. This figure is virtually unchanged from six months previously - so why are the 30% not getting out?

There's an acid test to evaluate efforts to transform care. It is this: Are commercial providers of ATUs investing, or exiting the market?

The answer, I'm afraid, is that the major private players are investing in their facilities. They see more demand and more opportunity, not less. And overseas investors see opportunity too - witness Acadia Healthcare's purchase of Priory Group for £1.5bn in January this year.

In the politics of funding, there remain many incentives for providers and commissioners not to push to get people out. The danger is that if we don't really invest in developing community alternatives whilst also funding current bed stock, people will move from NHS beds to non-NHS beds in so-called 'rehabilitation' and secure units, a pattern we have seen in mental health.

My grandma used to say that if it looks like a duck, and quacks like a duck, it is a duck. Well this looks like, and sounds like, funding politics keeping people locked up.

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The funding politics behind Transforming Care

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On Tuesday 13 September at 8pm, our Chief Executive, Steve Scown, was on Radio 4 discussing Transforming Care. In this blog he discusses conflicts of interest for those leading the programme. Rachel* has had a difficult life. Profoundly deaf, and with very little sight, her mother was ill with Rubella whilst pregnant.

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Gathering the Evidence: Making Personal Budgets Work for All report - Resources - Think Local Act Personal

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Gathering the Evidence: Making Personal Budgets Work for All report - Resources - Think Local Act Personal

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Gathering the Evidence: Making Personal Budgets Work for All report - Resources - Think Local Act Personal

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It is a response to the National Audit Office's report into Personalised Commissioning in Adult Social Care (published in March 2016). The NAO report originally drew attention to the lack of a firm evidence base for understanding the impact of personal budgets.

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The protest and power of disability activism: 'It's not as sexy as gay rights or climate change'

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The protest and power of disability activism: 'It's not as sexy as gay rights or climate change'

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"When you talk about disability rights with people, they just look at you like they didn't think such a thing existed," says Dr George Taleporos. "People don't like talking about, hearing or watching disability. It's not as sexy as gay rights or climate change. It's just not."

Taleporos is a disability rights activist, and a wheelchair user. He appeared in the first season of ABC TV's You Can't Ask Me That and now in the feature film documentary Defiant Lives. Director Sarah Barton tells a largely untold story, charting the history of the disability rights movement in Australia, the US and the UK. "As someone with a disability, it's really novel to see a film about your people," Taleporos says.

"Disability is never represented from a human rights perspective. It's represented through a lens of pity, or stories about overcoming the odds. The hero who, despite their hideous impairment, was able to get into the Paralympics. It's all about the hero and pity narrative. Never about the disability rights narrative."

Drawing on research from experts such as Taleporos, Barton's documentary asserts that this hero/pity narrative created a negative stigma that still has powerful implications today. It is associated with the medical model of disability, which is often criticised for treating people with disabilities as lacking or abnormal - or as if they are sick and in need of a cure.

Barton has previously explored disability issues in productions including Australia's first disability culture program, Channel 31's No Limits, which was hosted by the late Stella Young.

"When you hear of people having a baby, they say things like, 'I just want the baby to be healthy, I just want it to be normal'," Barton says. "It's kind of like disability is the worst possible thing that can happen. The reality is that it's not.

"Yes, it does lead to hardship, but often that hardship is due to lack of support and lack of understanding on the part of society. People's difficulties and hardships could be minimised if people with disabilities were well supported by the community."

In 2015, according to ABS data, 4.3 million people - or almost one in five Australians - reported living with a disability. In Australia more than 30,000 disabled people under 65 live in institutions or hospitals; in the United States that figure exceeds two million.

The cradle-to-the-grave approach to caring for people with disabilities is expensive. It's no surprise, then, that fundraising initiatives, such as telethons, have been introduced over the years to boost coffers. You know the kind, with dance numbers, puff pieces and wall-to-wall "inspirational" and/or tear-jerking stories interspersed with calls to action for viewers to cough up some coin.

Defiant Lives shows vision of such a telethon from the 1970s, featuring some the biggest names in local TV at the time including Barry Crocker, John Farnham and Pat McDonald. They hold hands, smile for the cameras and sway along to What the World Needs Now is Love. An image appears on screen with text reading "Happiness is helping spastic children".

Then, the documentary abruptly changes tone. Barton transitions to intense, pulse-pounding footage showing how members of the disability community responded to such broadcasts. Which is to say: not positively.

Furious anti-telethon campaigners, many in wheelchairs, gatecrash these events. They picket and protest. Some hold placards printed with messages such as "No pity".

All the telethons did was make them think that their lives were worthless, and having a disability was the worst thing in the world

Dr George Taleporos

"There was the assumption that telethons were a good thing for people with disabilities," Taleporos says. "But the reality was that all they did was make them think that they were going to die tomorrow, that their lives were worthless, and having a disability was the worst thing in the world.

"People would look at them and feel sorry for them, rather than give them jobs or ask them out on a date. The sort of things we want from other people."

Of course, Barton adds, initiatives like telethons came with good intentions: "I think a lot of people got involved because they wanted to help people," she says. "But where they failed was when disabled people spoke up and said, 'No, this is not the way we want to be portrayed. This does not give us dignity and respect.' Many of the people running those charities did not listen. The charities had also become addicted to the money they were raising."

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A Melbourne protest that stopped trams in 2012. Photograph: Fertile films

Most organisations, such as Yooralla, scrapped their telethons a long time ago in response to this community outcry. One that persisted for many years, in the face of considerable protest, was run by a person reviled within the disability community: the comedian Jerry Lewis.

"I remember watching Jerry Lewis on TV reruns," says Taleporos. "I never knew he was such a dickhead until I became aware of the disability rights movement."

The Jerry Lewis MDA (Muscular Dystrophy Association) Labor Day Telethon lasted for almost half a century - from 1966 to 2014, with Lewis dropping out as host in 2011. Some likened the event to a modern-day equivalent of the notorious 1932 film Freaks. It didn't help when Lewis wrote an astonishingly ill-advised magazine article entitled If I had muscular dystrophy in which he described people with MD as "half a person".

Says Barton: "Jerry Lewis was the worst offender, because he just said, 'No, I know better than you do', and kept going for decades in the face of protests. But there were others as well in Australia - the Miss Australia quest [which doubled as a fundraising initiative], that sort of thing - where really, they knew for a very long time that this pageant and quest and everything was on the nose, and they didn't do anything about it."

The director spent eight years constructing Defiant Lives. The documentary addresses various historical frameworks that have provided a lens through which sections of society have viewed disability rights - including social, medical and charity models.

It is also a film intended for mainstream consumption, with the aim to fill a gap in the market. As Taleporos observes: "When you go on Netflix, there's a documentary about every single stupid topic you could ever think of." But never any about disability rights.

American blogger and human rights activist Dominick Evans has described Defiant Lives as "essential viewing", but says there are gaps in its focus, including a lack of people of colour and of insight into work achieved by the deaf community. Barton says she captured examples of both in the shoot, but struggled to fit them into the narrative in the editing room.

"In a way it kind of goes against the premise of the film, which is that regardless of what your disability is, these issues apply," she says, addressing the criticism around lack of hearing-impaired people. "These issues of social barriers really do apply across the board. I never once went, 'Oh, I haven't got enough people with cerebral palsy' or 'I haven't got enough blind people or deaf people.' I was not concerned with what people's impairments were. I was concerned with their role in the bigger picture of the disability rights movement."

Making Defiant Lives palatable for general audiences involved homing in on areas of conversation far removed from things you find in textbooks or at conferences. Thus the riveting, at times hair-raising footage - including protests with disabled people literally putting their bodies on the line by chaining themselves to buses and throwing themselves off wheelchairs.

"That's when I knew I had a good film on my hand, when I found that," says Barton. "I wanted an audience not necessary connected [to the disability community] to see it. I want the film to open their minds to something they haven't necessarily thought about."
* Defiant Lives is screening through July and August in New South Wales, Queensland, Victoria and Western Australia. Visit the website for an up-to-date list of screenings

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The protest and power of disability activism: 'It's not as sexy as gay rights or climate change'

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"When you talk about disability rights with people, they just look at you like they didn't think such a thing existed," says Dr George Taleporos. "People don't like talking about, hearing or watching disability. It's not as sexy as gay rights or climate change. It's just not."

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We all have many stories about our lives and relationships, occurring simultaneously. For example, we have stories about ourselves, our abilities, our struggles, our competencies, our actions, our desires, our relationships, our work, our interests, our conquests, our achievements, our failures. The way we have developed these stories is determined by how we have linked certain events together in a sequence and by the meaning we have attributed to them.

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Narrative therapy seeks to be a respectful, non-blaming approach to counselling and community work, which centres people as the experts in their own lives. It views problems as separate from people and assumes people have many skills, competencies, beliefs, values, commitments and abilities that will assist them to reduce the influence of problems in their lives.

We have included here an extract from Alice Morgan's influential and highly popular text, What is narrative therapy? An easy-to-read introduction. We strongly recommend this book to anyone who is trying to, or is wanting to, apply narrative ideas in their own work context. Click here to purchase a copy of What is Narrative Therapy from our bookstore.

Introduction

There are many different themes which make up what has come to be known as 'narrative therapy' and every therapist engages with these ideas somewhat differently. When you hear someone refer to 'narrative therapy' they might be referring to particular ways of understanding people's identities. Alternatively, they might be referring to certain ways of understanding problems and their effects on people's lives. They might also be speaking about particular ways of talking with people about their lives and problems they may be experiencing, or particular ways of understanding therapeutic relationships and the ethics or politics of therapy.

Narrative therapy seeks to be a respectful, non-blaming approach to counselling and community work, which centres people as the experts in their own lives. It views problems as separate from people and assumes people have many skills, competencies, beliefs, values, commitments and abilities that will assist them to reduce the influence of problems in their lives.

There are various principles which inform narrative ways of working, but in my opinion, two are particularly significant: always maintaining a stance of curiosity, and always asking questions to which you genuinely do not know the answers. I invite you to read this book with these two principles in mind. They inform the ideas, the stance, the tone, the values, the commitments and the beliefs of narrative therapy.

Possibilities for conversations

When I meet with the people consulting me, I sometimes think of the possibilities for the directions of the conversation as if they are roads on a journey. There are many cross-roads, intersections, paths and tracks to choose from. With every step, a new and different cross road or intersection emerges - forwards, back, right, left, diagonal, in differing degrees. With each step that I take with the person consulting me, we are opening more possible directions. We can choose where to go and what to leave behind. We can always take a different path, retrace our steps, go back, repeat a track, or stay on the same road for some time. At the beginning of the journey we are not sure where it will end, nor what will be discovered.

The possibilities described in this book are like the roads, tracks and paths of the journey. Each question a narrative therapist asks is a step in a journey. All the paths may be taken, some of the paths, or one can travel along one path for a time before changing to another. There is no 'right' way to go - merely many possible directions to choose from.

Collaboration

Importantly, the person consulting the therapist plays a significant part in mapping the direction of the journey. Narrative conversations are interactive and always in collaboration with the people consulting the therapist. The therapist seeks to understand what is of interest to the people consulting them and how the journey is suiting their preferences. You will often hear, for example, a narrative therapist asking:

How is this conversation going for you?

Should we keep talking about this or would you be more interested in ...?

Is this interesting to you? Is this what we should spend our time talking about?

I was wondering if you would be more interested in me asking you some more about this or whether we should focus on X, Y or Z? [X, Y, Z being other options]

In this way, narrative conversations are guided and directed by the interests of those who are consulting the therapist.

Summary

So, before we dive into this exploration of narrative ways of working, let's quickly summarise what we have considered so far:

Narrative therapy seeks to be a respectful, non-blaming approach to counselling and community work, which centres people as the experts in their own lives.

It views problems as separate from people and assumes people have many skills, competencies, beliefs, values, commitments and abilities that will assist them to change their relationship with problems in their lives.

Curiosity and a willingness to ask questions to which we genuinely don't know the answers are important principles of this work.

There are many possible directions that any conversation can take (there is no single correct direction).

The person consulting the therapist plays a significant part in determining the directions that are taken.

It seems appropriate to begin any exploration of narrative therapy with a consideration of what is meant by the 'narratives' or 'stories' of our lives.

Chapter 1: Understanding and living our lives through stories

Narrative therapy is sometimes known as involving 're-authoring' or 're-storying' conversations. As these descriptions suggest, stories are central to an understanding of narrative ways of working.

The word 'story' has different associations and understandings for different people. For narrative therapists, stories consist of:

As humans, we are interpreting beings. We all have daily experiences of events that we seek to make meaningful. The stories we have about our lives are created through linking certain events together in a particular sequence across a time period, and finding a way of explaining or making sense of them. This meaning forms the plot of the story. We give meanings to our experiences constantly as we live our lives. A narrative is like a thread that weaves the events together, forming a story.
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We all have many stories about our lives and relationships, occurring simultaneously. For example, we have stories about ourselves, our abilities, our struggles, our competencies, our actions, our desires, our relationships, our work, our interests, our conquests, our achievements, our failures. The way we have developed these stories is determined by how we have linked certain events together in a sequence and by the meaning we have attributed to them.

An example: the story of my driving

I could have a story about myself as a 'good driver'. This means I could string together a number of events that have happened to me whilst driving my car. I could put these events together with others into a particular sequence and interpret them as a demonstration of me being a good driver. I might think about, and select out for the telling of the story, events such as stopping at the traffic lights, giving way to pedestrians, obeying the speed limits, incurring no fines and keeping a safe distance behind other vehicles. To form this story about my ability as a driver, I am selecting out certain events as important that fit with this particular plot. In doing so, these events are privileged over others.

As more and more events are selected and gathered into the dominant plot, the story gains richness and thickness. As it gains thickness, other events of my driving competence are easily remembered and added to the story. Throughout this process, the story thickens, becomes more dominant in my life and it is increasingly easy for me to find more examples of events that fit with the meaning I have reached.

These events of driving competence that I am remembering and selecting out are elevated in their significance over other events that do not fit with the plot of being a good driver. For instance, the times when I pulled out too quickly from the curb or misjudged the distances when parking my car are not being privileged. They might be seen as insignificant or maybe a fluke in the light of the dominant plot (a story of driving competence). In the retelling of stories, there are always events that are not selected, based upon whether or not they fit with the dominant plots.

The diagram on the next page [this figure cannot be represented here on this webpage but is included in the book!] demonstrates the idea of stories consisting of events linked in sequence across time according to plot. The X marks are all the events that have occurred in my life as a driver. The events that fit with the story of 'driving competence' are scattered amongst events that are outside of that story (e.g. a car accident that occurred 4 months ago). In order to author a story of driving competence, certain events are selected out and privileged over other events. Once privileged, they are linked with other events, and then still more events across time, to form a story about being a good driver. The line on the diagram shows this linking of events to form the dominant story. As you can see there are other events (X) that are outside of this dominant story that remain hidden or less significant in the light of the dominant plot.

In this example, perhaps why I can attend only to the good events, and have managed to construct a story of being a competent driver, is due to the reflections of others. If my family members and friends have always described me as a good driver, this would have made a significant difference. Stories are never produced in isolation from the broader world. Perhaps, in this example, I was never subjected to diminishing remarks on the basis of my gender. Who knows?

The effects of dominant stories

The dominant story of my driving abilities will not only affect me in the present but will also have implications for my future actions. For example, if I am asked to drive to a new suburb or drive a long distance at night, my decision and plans will be influenced by the dominant story I have about my driving. I would probably be more inclined to consider doing these things when influenced by the story I have about myself as being a good driver than if I had a story about myself as being a dangerous or accident-prone driver. Therefore, the meanings I give to these events are not neutral in their effects on my life - they will constitute and shape my life in the future. All stories are constitutive of life and shape our lives.

Living many stories at once

Our lives are multistoried. There are many stories occurring at the same time and different stories can be told about the same events. No single story can be free of ambiguity or contradiction and no single story can encapsulate or handle all the contingencies of life.

If I had a car accident, or if someone in my life began to focus on every little mistake that I ever made while driving, or if a new law was introduced that discriminated against people like me in some way, an alternative story about my driving might begin to develop. Other events, other people's interpretations of these events, and my own interpretations could lead to an alternative story developing about my driving - a story of incompetence or carelessness. This alternative story would have effects too. For a time I might live with differing stories about my driving depending upon the context or the audience. Over time, depending on a variety of factors, the negative story about my driving might gain in influence and even become the dominant story in my life in relation to my driving. Neither the story of my driving ability nor the story of my driving failure would be free of ambiguity or contradiction.

Different types of stories

There are many different sorts of stories by which we live our lives and relationships - including stories about the past, present and future. Stories can also belong to individuals and/or communities. There can be family stories and relationship stories.

An individual may have a story about themselves as being successful and competent. Alternatively they may have a story about themselves as being 'a failure at trying new things' or 'a coward' or as 'lacking determination'. Families may have stories about themselves as being 'caring' or 'noisy' or 'risky' or 'dysfunctional' or 'close'. A community may have a story about itself as 'isolated' or 'politically active' or 'financially strong'. All these stories could be occurring at the same time, and events, as they occur, will be interpreted according to the meaning (plot) that is dominant at that time. In this way, the act of living requires that we are engaged in the mediation between the dominant stories and the alternative stories of our lives. We are always negotiating and interpreting our experiences.

The broader social context of the stories by which we live our lives

The ways in which we understand our lives are influenced by the broader stories of the culture in which we live. Some of the stories we have about our lives will have positive effects and some will have negative effects on life in the past, present and future. Laura may describe herself as a skilled therapist. She has developed this story about herself from her experiences and feedback from her work. All these experiences have contributed to shaping a story about herself as a competent, caring and skilful therapist. When faced with the decision to apply for a new job in a field that is less familiar to her, Laura is more likely to apply or think about applying under the influence of this positive self-narrative. I suspect that she would experience the challenges in her work with some confidence and might talk about her work in ways that describe it as enriching.

The meanings that we give to these events occurring in a sequence across time do not occur in a vacuum. There is always a context in which the stories of our lives are formed. This context contributes to the interpretations and meanings that we give to events. The context of gender, class, race, culture and sexual identity are powerful contributors to the plot of the stories by which we live. Laura's story of herself as a skilled therapist, for instance, would have been influenced by the ideas of the culture in which she lives. This culture would have particular beliefs about what constitutes 'skills' as a therapist and Laura's story would be shaped by these beliefs.

Laura's working-class background may have significantly contributed to the ways in which she finds it easy to make connections with people who come to consult with her from a diversity of backgrounds. Her confidence in speaking out in work situations may have much to do with her history within the feminist movement and also the fact that as she is a white Australian professional, it is likely that people will listen to what she is saying.

In these sorts of ways, the beliefs, ideas and practices of the culture in which we live play a large part in the meanings we make of our lives.

Summary

As I have tried to explain, narrative therapists think in terms of stories - dominant stories and alternative stories; dominant plots and alternative plots; events being linked together over time that have implications for past, present and future actions; stories that are powerfully shaping of lives. Narrative therapists are interested in joining with people to explore the stories they have about their lives and relationships, their effects, their meanings and the context in which they have been formed and authored.

Chapter 2: Stories in the therapeutic context

Let us think about some of the stories that are brought into the context of therapy. Most commonly, when people decide to consult a therapist it is because they are experiencing a difficulty or problem in their lives. When meeting with a therapist, they will often begin by telling the therapist about many events in the life of the problem for which they are seeking help. Commonly they will also explain the meanings they have given to these events.

The Craxton family sought my assistance when one of the members of the family, Sean, was caught stealing. As I heard about the problem of stealing, Sean's parents explained:

We are really worried about Sean because he is stealing and we have tried to stop him but he just won't. He's always been a problem child from the time he was little. He didn't get much attention when he was a small boy because Anne [his mother] was ill. Since then he always gets in trouble at school. He didn't toilet train himself and is always starting fights with his brothers. Now he's stealing to get people to notice him.

Within this story, Sean's stealing was interpreted as meaning he was 'attention seeking'. This particular meaning (or dominant plot) occurred through a gathering together of many other events in the past that fitted with this interpretation. As Sean more and more came to be seen according to this story, more and more events which supported the story of 'attention seeking' began to be selected out, and the story was told and re-told. As more events were added to this plot, the story of Sean as an 'attention seeker' became stronger.

To tell this particular story, certain events from the present and past were selected out and explained to fit with the meanings that his parents had arrived at. In doing so, certain events were selected and privileged to be told, as they were interpreted to fit with the plot of 'attention seeking'. Therefore, other events (that didn't fit with Sean as seeking attention) remained untold and unrecognised. The exceptions to this story of 'attention seeking' or times that might not fit with the 'attention seeking' story became less visible. So too, the broader cultural understandings of Sean's actions become obscured - including the fact that stealing is a common act by young men of Sean's class background in his neighbourhood. All the complexities and contradictions of Sean's life had been simplified into the understanding that Sean was an 'attention seeker'.

Thin description

Early in their meetings with people, therapists often hear stories, like the one above, about the problem and the meanings that have been reached about them. These meanings, reached in the face of adversity, often consist of what narrative therapists call 'thin description'.

Thin description allows little space for the complexities and contradictions of life. It allows little space for people to articulate their own particular meanings of their actions and the context within which they occurred. For example, in the story above, the description of Sean's behaviour as 'attention seeking' was a thin description. It was generated by others (as is often the case with thin descriptions) and left little room for movement.

This thin description of Sean's actions (attention seeking) obscures many other possible meanings. For all we know, the last thing Sean wanted may have been for his stealing to be given attention! Perhaps these actions had more to do with making a stand for belonging with peers, with acquiring something for his sister, with standing up to the bullying of others, or with establishing himself as a leader in a neighbourhood where leadership for a young man means leading break and enters (robberies). A thin description of 'attention seeking' has the potential to leave Sean isolated and disconnected from his parents and his peers, whereas alternative descriptions may open other possibilities.

Often, thin descriptions of people's actions/identities are created by others - those with the power of definition in particular circumstances (e.g. parents and teachers in the lives of children, health professionals in the lives of those who consult them). But sometimes people come to understand their own actions through thin descriptions. In whatever context thin descriptions are created, they often have significant consequences.

Thin conclusions and their effects

Thin description often leads to thin conclusions about people's identities, and these have many negative effects. For example, as Sean's actions were thinly described as 'attention seeking', he quickly became seen as 'an attention seeker'. This thin conclusion about Sean as a person was having negative effects, not only in relation to Sean's experience of himself, but also on the relationships between Sean and his parents.

Thin conclusions are often expressed as a truth about the person who is struggling with the problem and their identity. The person with the problem may be understood to be 'bad', 'hopeless', or 'a troublemaker'. These thin conclusions, drawn from problem-saturated stories, disempower people as they are regularly based in terms of weaknesses, disabilities, dysfunctions or inadequacies. I can recall many of these thin conclusions that people who have consulted me have been invited into: 'It's because I'm a bad person' or 'We are a dysfunctional family'.

Sometimes these thin conclusions obscure broader relations of power. For example, if a woman has come to see herself as 'worthless' and 'deserving of punishment' after years of being subjected to abuse, these thin conclusions make invisible the injustice she has experienced. They hide the tactics of power and control to which she has been subjected, as well as her significant acts of resistance.

Once thin conclusions take hold, it becomes very easy for people to engage in gathering evidence to support these dominant problem-saturated stories. The influence of these problematic stories can then become bigger and bigger. In the process, any times when the person has escaped the effects of the problem, any times when they have not been 'bad', 'hopeless' or 'a trouble maker' become less visible. As the problem story gets bigger and bigger it becomes more powerful and will affect future events. Thin conclusions often lead to more thin conclusions as people's skills, knowledges, abilities and competencies become hidden by the problem story.

Alternative stories

Narrative therapists, when initially faced with seemingly overwhelming thin conclusions and problem stories, are interested in conversations that seek out alternative stories - not just any alternative stories, but stories that are identified by the person seeking counselling as stories by which they would like to live their lives. The therapist is interested to seek out, and create in conversations, stories of identity that will assist people to break from the influence of the problems they are facing.

Just as various thin descriptions and conclusions can support and sustain problems, alternative stories can reduce the influence of problems and create new possibilities for living.

For Sean, for example, an exploration of the alternative stories of his life might create space for change. These would not be stories of being an attention seeker or a problem child. Instead, they might consist of stories of determination throughout his history, or stories of how he overcame troubles in earlier times in his life, or ways in which he gives attention as well as seeks it. All of these might be alternative stories of Sean's life. Or, alternative stories might be found in other realms entirely - realms of imaginary friends, histories of connectedness with his mother or father, or within special knowledges that Sean might possess through his relationship with his beloved pet dog Rusty. In any of these territories of life, through therapeutic conversations, alternative stories might be unearthed that could assist in addressing the problems Sean is currently struggling with. The ways in which therapists and those who consult with them can co-author alternative stories will be described in following chapters.

With these ideas about stories informing their work, the key question for narrative therapists becomes: how can we assist people to break from thin conclusions and to re-author new and preferred stories for their lives and relationships?

As Jill Freedman and Gene Combs describe:

Narrative therapists are interested in working with people to bring forth and thicken stories that do not support or sustain problems. As people begin to inhabit and live out the alternative stories, the results are beyond solving problems. Within the new stories, people live out new self images, new possibilities for relationships and new futures. ( 1996, p.16)

Towards rich and thick description

To be freed from the influence of problematic stories, it is not enough to simply re-author an alternative story. Narrative therapists are interested in finding ways in which these alternative stories can be 'richly described'. The opposite of a 'thin conclusion' is understood by narrative therapists to be a 'rich description' of lives and relationships.

Many different things can contribute to alternative stories being 'richly described' - not least of which being that they are generated by the person whose life is being talked about. Rich description involves the articulation in fine detail of the story-lines of a person's life. If you imagine reading a novel, sometimes a story is richly described - the motives of the characters, their histories, and own understandings are finely articulated. The stories of the characters' lives are interwoven with the stories of other people and events. Similarly, narrative therapists are interested in finding ways for the alternative stories of people's lives to be richly described and interwoven with the stories of others.

The ways in which alternative stories are co-authored, how they are told and to whom, are all relevant considerations for narrative therapists. In the following pages, ways to co-author conversations that engage people in the 'rich description' of their lives and relationships will be more fully explored.

Further reading

What is narrative therapy? An easy-to-read introduction is available from The Narrative Therapy Library and Bookshop and we strongly recommend it to anyone who is trying to, or is wanting to, apply narrative ideas in their own work context.

Click here to purchase a copy of What is Narrative Therapy from our bookstore.

The book Retelling the stories of our lives: Everyday narrative therapy to draw inspiration and transform experience by David Denborough was written to introduce narrative ideas to the general public.

Other key texts include that introduce the story metaphor include:

Freedman, J. & Combs, G. 1996:
'Shifting paradigms: From systems to stories.' In Freedman, J. & Combs, G., Narrative therapy: The social construction of preferred realities, chapter 1. New York: Norton.

Epston, D. & White, M. 1990:
'Story, knowledge, power.' In Epston, D. & White, M., Narrative means to therapeutic ends, chapter 1. New York: Norton.

White, M. 1997:
'The culture of professional disciplines.' In White, M.,Narratives of therapists' lives, chapter 1. Adelaide: Dulwich Centre Publications.

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What is Narrative Therapy? - The Dulwich Centre

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Narrative therapy seeks to be a respectful, non-blaming approach to counselling and community work, which centres people as the experts in their own lives. It views problems as separate from people and assumes people have many skills, competencies, beliefs, values, commitments and abilities that will assist them to reduce the influence of problems in ...

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Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people

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Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people

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At rst glance, there is therefore a strong synergy between the perspectives under- pinning public health and the wider disability movement; both are concerned with socially generated inequalities in people’s lives and with the potential for inclusive policies, to improve the health and thus well-being of those whose lives are structured by systematic disadvantage. It might be expected that research links between the two disciplines would be strong, particularly given the increasing emphasis on public health policies that are user informed and evidence based.
Politically active disabled people wanted any human rights tools or decision aids linked to ethics in public health research to now explicitly note a social model of human rights. This implies theoretically and methodologically creating research to understand how health inequalities become linked to political entitlements and societal construction of disability and disablement.

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How global are the 'global' accountancy firms and who are they accountable to? Such questions are highly relevant: 'global' firms audited Enron, WorldCom, Xerox and Vivendi.

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How global are the 'global' accountancy firms and who are they accountable to? Such questions are highly relevant: 'global' firms audited Enron, WorldCom, Xerox and Vivendi.

The websites of all major accountancy firms claim they are 'global' businesses offering integrated services. This has boosted their worldwide income to more than $70 billion a year. They use the same logo, headed paper and advertising campaign. They have a worldwide board of directors, a chairman and a chief executive officer, often headquartered in secretive offshore tax havens with no information-sharing treaties with other nation states or regulators.

These firms have been the driving force behind moves by the International Accounting Standards Board to take accounting rules out of the hands of governments and put them in the grip of major corporations and firms. But they are silent on their global accountability.

Arthur Andersen audited Enron, including its UK operations, and also provided worldwide consultancy. As the Securities & Exchange Commission launched criminal proceedings against the firm for shredding documents in Houston, Chicago and London, the firm claimed that it was not 'global'.

Its press statement stated: 'Arthur Andersen LLP [the US firm], an autonomous member firm of the Andersen Worldwide SC organisation, contracted with, performed the audits of, and signed the audit opinions on Enron's financial statements. Accordingly, Arthur Andersen LLP is the only proper defendant in claims relating to that audit opinion. Andersen in the UK has no obligation to satisfy the legal liabilities of other member firms.'

Price Waterhouse (now part of PricewaterhouseCoopers) became the auditor of the fraud-infested Bank of Credit and Commerce International (BCCI) by claiming it was a 'global' firm. In 1991, after the forced closure of BCCI, a committee of the US Senate conducted an inquiry into the $11bn frauds and audit failures. It subpoenaed Price Waterhouse to produce its files, including the papers held by its UK offices. At this point, the US office of the firm claimed: 'The British partnership of Price Waterhouse did not do business in the US and could not be reached by subpoena.'

The firm added: 'The 26 Price Waterhouse firms practise, directly or through affiliated Price Waterhouse firms, in more than 90 countries throughout the world. Price Waterhouse firms are separate and independent legal entities whose activities are subject to the laws and professional obligations of the country in which they practise ... No partner of PW-US is a partner of the Price Waterhouse firm in the United Kingdom; each firm elects its own senior partners; neither firm controls the other; each firm separately determines to hire and terminate its own professional and administrative staff.... each firm has its own clients; the firms do not share in each other's revenues or assets; and each separately maintains possession, custody and control over its own books and records, including work papers. The same independent and autonomous relationship exists between PW-US and the Price Waterhouse firms with practices in Luxembourg and Grand Cayman.'

The US Senate inquiry also learned that ultimate control of Price Waterhouse rested with Price Waterhouse Worldwide, based in Bermuda, which did not co-operate with the US Justice Department. In 1996, the Justice Department pursued a fraudster operating a shell company, Merlin Overseas Limited, from Antigua. It consisted of little more than a fax machine in a Caribbean office of Price Waterhouse. The Manhattan district attorney prosecuted the fraudster, but could not get at Price Waterhouse. The district attorney's office asked Price Waterhouse in Manhattan for help, but was told that Price Waterhouse in Antigua is not the same legal creature as the one in New York.

On 26 February 1995, amid revelations of £827 million fraud, Barings Plc collapsed. For many years it had been audited by Coopers & Lybrand (C&L - now part of PricewaterhouseCoopers) in Singapore and also by Deloitte & Touche (D&T). The Bank of England's inquiries were frustrated. Its 1995 report said: 'We have not been permitted access to C&L Singapore's work papers ... or had the opportunity to interview their personnel. C&L Singapore has declined our request for access, stating that its obligation to respect its client confidentiality prevents it assisting us. We have not been permitted either access to the working papers of D&T or the opportunity to interview any of their personnel who performed the audit.'

Major accountancy firms have devised careful corporate structures to avoid showing their files to regulators. The governments know that despite securing 'global' appointments and fees, these firms are avoiding their responsibilities.

They could pass laws requiring auditors to show their working papers to named regulators. They could fine and shut firms obstructing fraud inquiries. Instead of exposing audit failures and increasing protection for stakeholders, governments have done nothing to call 'global' firms to account.

Monopoly: the Big Four and the FTSE 100

PWC 43 clients*

KPMG 25 clients*

D&T 17 clients

E&Y 16 clients

*BHP Billiton shared

&#183 Prem Sikka is Professor of Accounting at the University of Essex
Topics

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How global are the 'global' accountancy firms and who are they accountable to? Such questions are highly relevant: 'global' firms audited Enron, WorldCom, Xerox and Vivendi. The websites of all major accountancy firms claim they are 'global' businesses offering integrated services. This has boosted their worldwide income to more than $70 billion a year.

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Useful Resources - The Research Companion

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Useful Resources - The Research Companion

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Below is an A-Z of websites, papers, toolkits and other useful stuff to help you on your research journey. I'm always updating this resource so if there's something you think I need to include here please let me know. This is in no way a complete nor systematic list of all resources for the social or health services or development. Instead, consider it a virtual rummage bin of things I find on my travels that I hope are useful to you as well. More how-to guidance on getting your research done can be found in the Research Companion book
A
Action Research
actionresearch.net Wikipedia on Action Research What is Action Research? Infed Guide to Action Research Researching Reform Centre for Applied Social Research Research to Action Offender Health Research Network Activism Funknbeans Poor As Folk
Showing Up for Racial Justice Psychology Matters Social Action and Research Foundation Psychologists Against Austerity Science is Vital
Bratislava Declaration of Young Researchers Progressive Science Institute School for Health and Care Radicals Psychologists for Social Responsibility Sustainable Standup Progressive Science Anonymity and Confidentiality University of Lancaster's Guide on Anonymity and Confidentiality
Managing anonymity and confidentiality
in social research: the case of visual data
in Community research
Principles of Anonymity, Confidentiality and Data Protection Anthropology The Geek Anthropologist Discover Anthropology Medicine Anthropology Theory Authorship Publication Practices & Responsible Authorship Wikipedia on Academic Authorship International Committee of Medical Journal Editors - defining roles of authors and contributors Committee on Publication Ethics (COPE) B C Career Advice Career Smart The Early Career blog Sabbatical Homes Case reports and studies A (Very) Brief Refresher on the Case Study Method Case Reports Cohort Studies Medical Research Council's Cohort Directory Communications Comms2Point0 Communications in healthcare improvement, a toolkit Critical Appraisal and reading skills Critical Appraisal Skills Programme CASP (Critical Appraisal Skills Programme) Tools and Checklists What is critical appraisal (list of checklists) What is critical appraisal? How to Read a Paper: The Basics of Evidence-Based Medicine Critical Appraisal: Notes and checklists Critical appraisal of a journal article Critical Appraisal Checklists University of Michigan's How to Read A Book Critical Thinking/Methods Critical Methods Collective What is critical research? The Critical Institute Collaboration National Collaborating Centre for Methods and Tools Wikipedia on Collaborative Methods Knowledge Incubation in Innovation and Creation for Science (KiiCS) Community Community Tool Box Community Psychology Community Psychology UK ResUp MeetUp Community Health Work Central World Community Grid ReachOut Consortium Educate & Advocate Comparative Research Wikipedia on Comparative Research Comparative Research Methods The comparative approach: theory and method Methodology in comparative studies Conferences Conference Alerts All Conferences PLOS Conference Announcements Moderating Panels Patient/Community/Lay/Consumer Involvement Consumer involvement: a new perspective Cochrane Consumers and Communication aHUS Alliance Working Together: a toolkit for health professionals on how to involve the public (West of England Academic Health Science Network)
NIHR Patients and the Public
Patients and Research North West People in Research Forum People In Research Patient Opinion Why we do research Patient Voices Epatient Dave The Arnold P.Gold Foundation Tommy On Tour James Lind Alliance Typefaces for dyslexia Public Involvement Impact Assessment Framework (PiiAF) Consent Informed Consent Resources (University of Southampton) Informed Consent (links to resources and tools) Content Analysis Content Analysis Wikipedia on Content Analysis Sociological research skills on content analysis Introduction to content analysis Conversation Analysis Wikipedia on conversation analysis Introductory tutorial in conversation analysis Cross Cultural Practice Society for Cross Cultural Research Wikipedia on Cross Cultural Studies Multiculturalism Forum Cross National Research Methods for Cross National Research Initiative Wikipedia on Cross National Research Cross Sectional Research Wikipedia on Cross Sectional Research Cross Sectional Studies Cultural Studies Stuart Hall Memorial D Data Where there is no data Our World in Data Edward Tufte UK Data Service UK Data Service Student Resources Being Measured Dianthus Medical UK Data Archive Data Centre I Love Charts Information is beautiful Aggregate census data guide Data Science Association School of Data Childrens' Investment Fund Foundation guide to Data and Evidence BMJ films on improving graphs and tables IMF Data Mapper Data Collection Wikipedia on data collection Data collection methodology Demography Max Planck Institute for Demographic Research Development Research for development DFID Bloggers
Development Bookshelf OECD Aid Effectiveness OECD Development Charts
UK Collaborative on Development Science Global Development Lab UNDP Millennium Development Goals for 2015 The Reality of Aid Overseas Development Institute Impact Alliance
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Digital Methods as Mainstream Methodology (2013 report from NCRM) Overview of Social Media Research Tools New Social Media New Social Science A-Z of social media for academics Social Media for Development FurtherField Discourse Analysis Wikipedia on Discourse Analysis Discourse in Society Dissertations How to start your dissertation Writing a dissertation How to plan your dissertation How to write your dissertation Final Year Projects Planning and conducting a dissertation project (University of Leicester) Completing your dissertation without tears Dissertation Recipes O'Leary: Doing your research project Doing research in the real world Disaster, Conflict and Humanitarian Work Evidence Aid Medecins Sans Frontieres Field Research International Crisis Group International Rescue Committee United Nations Office for Disaster Risk Reduction Crisis States Research Network Peace and Collaborative Development Network Global Peace Index Research for Health in Humanitarian Crises Harvard Humanitarian Initiative (ATHA) CHS Alliance Emergency Capacity Building Project Coordination SUD Sphere Project Uppsala Department of Peace and Conflict Research Dissemination Strategies for disseminating research findings Dissemination planning tool International Innovation Distance Learning Open University Distance Learning Courses University of London International Programmes International Council for Open and Distance Education Documentary Analysis The use of Documentary Research Methods in Social Research E Economics The Undercover Economist Rural Finance International Monetary Fund Royal Economic Society World Economics Association International Economic Association The Atlas (tracking economic growth) Globe (Harvard guide to companies) European Economic Association African Finance and Economic Association The African Econometric Society East Asian Economic Association Asia Pacific Economic Association International AIDS Economics Network International Budget Partnership LSE Business Review Studying Economics Ranking of Econonmies International Trade in Goods Education National Foundation for Educational Research Research at Department for Education (UK) British Educational Research Association Schoolnet Africa London Connection (online magazine for University of London's International Programmes) Global Campaign for Education UNESCO Education for All Science of the Invisible International Education Network Professionals in International Education (PIE) Schools and Students Health Education Unit (SHEU) TrustAfrica Teacher Toolkit Science of Continuing Education Crybrary Man's Educational Websites (and hashtags) Emerge Africa Environment African Network of Environmental Humanities IEA Energy Atlas Land Matrix Epidemiology Medicine and Health: Epidemiology WHO on Epidemiology Ethics The TRUST Project (protecting vulnerable populations) Health Research Authority My research project The Research Ethics Guidebook
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Norwegian National Research Ethics Committees - Ethical Guidelines for Research NIH Research Ethics Training Training and Resources in Research Ethics Evaluation Research Ethics Training Curriculum The Ethicist Blog International Development Ethics Association University of Leeds Ethics Resources Ethics and Engagement across the Wellcome Overseas Programme (e-MOPs) Committee on Professional Ethics (American Sociological Association) University of Otago's Ethics Application Repository Markkula Centre for Applied Ethics Ethnography What is ethnography? Wikipedia on ethnography Ethnography Matters Digital Ethnography The Ethnography Collections Evaluation Better Evaluation Institute for Health Metrics and Evaluation MEASURE Evaluation
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g>Event History Analysis
Event History Analysis Evidence Based Evidence based healthcare and systematic reviews What is evidence based medicine? Reframing evidence synthesis as rhetorical action in the policy making drama
The mess on the web (evidence synthesis) Giving Evidence blog Students 4 Best Evidence InnovAiT blog Science Based Medicine Alliance for Useful Evidence Testing Treatments European Association for Health Information and Libraries Africa Evidence Network Exclusion and Inclusion Criteria Wikipedia on Inclusion and Exclusion Criteria Protocol design: inclusion and exclusion criteria Exploratory Research Wikipedia on Exploratory Research F
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Many institutions advertise scholarships, fellowships and job opportunities internally. If you look at the 'Higher Education' and 'Funding' sections these provide additional places to look for work or study opportunities.
Focus Groups Planning and research design for focus groups Focus Groups Funding and research organisations Leverhulme British Academy Medical Research Council British Council Funding Central National Endowment for the Humanities European Association for the study of Science and Technology World Health Organisation (WHO) Grants IMMANA Grants (agriculture and nutrition) Irish Research Council European Research Council Association of Medical Research Charities ResearchResearch Commonwealth Scholarships Commission Higher Education Funding Council for England (HEFCE) Wiserd (Wales) National Research Foundation (SA) Howard Hughes Medical Institute Social Sciences and Humanities Council (Canada) Independent Social Research Foundation Norface (New Opportunities for Research Funding Agency Co-operation in Europe) Cash for Questions blog (Social Science Research Funding) American Council of Learned Societies US Department of Education Student Loans Guggenheim Fellowships Anderson Centre The Society for the Psychological Study of Social Issues American Philosophical Association Diversity and Inclusiveness Funding Happiness and Wellbeing Grants Ford Foundation DIFD Funding finder email alert service Funds for NGOs Top 10 Tips on How to Get Funding Guide for writing a funding proposal The Art of Writing Proposals Grant Writing for Non Profits Social Science Research Funding Vitae's guide on seeking funding and links to European funding sources Emory Prevention Research Centre presentation on 'Why Grant Proposals Fail' The Research Funding Toolkit Beginnings: how to write your first grant proposal. Nature Blogs G Geography
Progressive Geographies Global Health Hesperian Health Guides Global Health Council Institute For Global Health (UCL) Global Health Action Steps Centre Healthcare Information For All Centre for Global Development Healthcare Leadership Academy Global Health Hub HIFA Voices Health and Education Advice and Resource Team (HEAT) Missing Maps Project Youth Mappers SciDevNet (Science and Technology for Global Development) Indepth Network Wellbeing Research in Developing Countries South African Regional Poverty Network People's Health Movement Disease Control Priorities DP3 Globalisation and Migration International Labour Organisation Globalisation Institute Global Policy Forum African Health Policy Network International Health Policices Centre for Global Development Migration, Globalisation and Poverty International Organisation for Migration National Institutes of Health Humanosphere Health Poverty Action Ecosystems Services for Poverty Alleviation Governance Replacing the Research Governance Framework Grey Literature GreyNet International Grounded Theory Grounded Theory Online H Healthcare Frontline Health Workers
The Researcher Magazine (NHS) NIHR Research Design Service The EQUATOR Network (Enhancing the QUAlity and transparency of healthcare research)
UK Clinical Research Collaboration Conducting Clinical Research Cambridge Nurses in Research
Global Research Nurses Academy of Medical Sciences National Collaborating Centre for Methods and Tools Best Health (evidenced information to help healthcare decisions) Evidence Based Medicine Toolkit The Risk Communication Institute (features visual tools for communicating risk) Health Services Research Live Danielle Ofri
UKCRC Tissue Directory HealthWatch Health Affairs Healthcare Without Harm Health and Care Professions Council Kissing It Better The Academy of Fabulous NHS Stuff Slow Medicine NHS England learning environment ResearchKit Person Centred Care UK Society for Behavioural Medicine Higher Education Access to HE (details of UK courses and studies for degree level entry) Inside Higher Education Times Higher Education Higher Education Academy Critical Education University Ranking Watch Society for Research into Higher Education Learn Higher Research Degree Voodoo University Alliance Wonk HE (policy) Chronicle of Higher Education University World News World Education Services - Regional Educational Links University Affairs, Canada Academic Matters Online learning and distance education resources Information Literacy Weblog Faculti.net Bishop Blog Society for the Advancement of Hispanics/Chicanos and Native Americans in Science Council for the Defence of British Universities Hybrid Pedagogy Responsible Metrics Critical Education Global Higher Education BrainTrack (on Facebook) Association of Commonwealth Universities Map of UK Universities Universities Worldwide History Wellcome Collection Global Health Histories Cheiron: The International Society for the History of the Behavioral and Social Sciences Working Class Movement Library The Disability History Association Institute of Historical Research Raphael Samuel History Centre Past To Present Genealogy Humanities Open Library of Humanities London Arts and Humanities Partnership Innovation and the Humanities The Recipes Project I International MacArthur Foundation e-International Relations Impact What is impact? Pathways to Impact Fast Track Impact ESRC Impact Toolkit Research Impact Canada Innovation Innovations in social science research methods International Development Innovation Network Interaction Analysis Interaction analysis: Foundations and practice Interviews Interview methods Semi structured interviews oTranscribe J Just for Fun Acadecomic Sad Chairs of Academia Academia Obscura Shit Academics Say Research Wahlberg Blind date with a book Errant Science Comics Statistically Funny K L Literature Reviewing Starting a Literature Review Doing a Literature Review The literature review: a few tips on conducting it Deakin University Library Search and Literature Review Guide How to do a literature review Literature Searching Cochrane Library Web of Knowledge 100 Search Engines for Academic Research Academic Info Longitudinal What is qualitative longitudinal research? Longitudinal FAQs Understanding Society (UK Household Longitudinal Survey) M Marginalised Scholars
How to prep for grad school while poor Conditionally Accepted The Para Academic Handbook
Sociologists Outside Academia Adjunct Nation LGBT Aid and Development Workers Queering Education The University of Colour British Black Academics PhD Network PhDisabled Disability Research Forum Crippled Scholar blog Ramp Your Voice Your Queer Prof Urbane Adventurer: Amiskwacî Black Sisters Network: Black British Academics Let Us Learn National Joint Committee for Learning Disabilities Media Diversified, resources for academics Decolonization Decolonization: Indigeneity, Education and Society Dismantling the Master's House Why is my curriculum white? CASA (Casual, Adjunct, Sessional Staff and Allies in Higher Education in Australia) Media and Culture Open Culture David Gauntlett Theory.org.uk Critical Theory Theory, Culture and Society Medical Humanities Centre for Medical Humanities LitMed - Literature Arts Medicine Database Association for Medical Humanities Mental Health Centre for Global Mental Health Meta Analysis What is Meta Analysis? Method* Introduction to Research Responsible conduct of Research Directory of Social Research Methods Research methods: some notes to orient you Exploratory, descriptive and causal research designs Research Methods Knowledge Base
Goldsmith's Methods Lab The Research Assistant Electronic Resources for Research Methods Free Resources for Program Evaluation and Social Research Methods Methodspace (resources and books on methods from Sage publishers) Political Sciences Replication Research Methods in the Social Sciences (collection of videos) Mixed Methods International Research Association Everyday Research Methods LSE's Thinking Methods University of Southern California's Research Help and How-Tos HE Academy's Frameworks and Toolkits N Narrative Methods Centre for Narrative Research Telling stories: narrative approaches in qualitative research StoryCorps Networking Opportunities Research Gate Scholastica Geazle (for STEM) Academia.edu Nature Network Nominal Groups Gaining consensus among stakeholders through the nominal group technique Nominal Group Technique O Observation Advantages and disadvantages of observation Participant observation field guide Observational research methods Mass Observation Archive Older People WHO's database of age-friendly practices Open Access Public University The People's University
British Sign Language Corpus Project Philanthropy University World Digital Library Knowledge Mobilisation NOBA - teach and learn psychology for free Open Access Working Group RRI Toolkit JISC Open Access Open Access Button Policy Compass Public Strategist Scholarly Open Access Right Relevance Scholarly and Research Communication SaS Open Journals BMJ's Research to Publication MOOC around the world - list of global courses Open Prescribing Internet Archive Research Fish This is 2020 Oral History Oral History Toolkit Oral History Society P Participatory Methods Participatorymethods.org
Understanding Everyday Participation World Bank on Participatory Methods Toolkit for Citizen Participation Federal Crowdsourcing and Citizen Science Toolkit Participation Compass IIED Participatory Learning and Action Participatory Learning Techniques The People's Report Flint Water Study Participate 2015 CIVICUS (World Alliance for Citizen Participation) Participatory Research Methods: A methodological approach in motion
Participatory Action Research Experiment.com
Morgan Centre Manchester's guide to participatory methods and Participatory Mapping

Mesh (Global Health Network) Peer Review Sense About Science on Peer Review Peer Review Week PhDs Dissertation/Thesis Guide (available in English, Arabic, Spanish and Portuguese) The Thesis Whisperer Get a Life, PhD The PhD Diaries (UCL) Postgraduate Resources Warwick University's PhD Life The PhD Game Beyond the Professoriate From PhD to Life
Beyond the Tenure Track Tenure, She Wrote The Virtual Leader Philosophy Critical Theory Zara Does Philosophy Piloting The importance of pilot studies A tutorial on pilot studies Plagiarism Avoiding Plagiarism Plagiarism Advice
American Journal Experts - Avoiding Plagiarism Policy Policy Wonkers New Policy Institute Discover Society Voice of Researchers On Think Tanks Sexuality Policy Watch Sustainable Learning Postdoc National Postdoctoral Association Postdoc Experience Presenting Your Work Colin Purrington
Powerpoints of Twitter Protocols Life Science Protocol Repository Psychology Psychology in Africa Psychological Society of South Africa European Federation of Psychologists' Associations Journal of European Psychology Students blog (JEPS Bulletin) International Association of Applied Psychology International Association for Cross Cultural Psychology
American Psychological Association (Plus Divisions)
Providentia Asian Association of Social Psychology Social Psychology (UK) Canadian Social and Personality Psychology Social Psychology Network European Association of Social Psychology Japanese Society of Social Psychology Society for Philosophy and Psychology Association for Psychological Science Federation of Associations in Behavioural and Brain Sciences Association of Black Psychologists Black PhD Network International Council of Psychologists International Social Cognition Network International Society for Self and Identity International Society for Political Psychology Society for Community Research and Action Society for Personality and Social Psychology Society for Social Neuroscience Society for the Psychological Study of Social Issues National Academy of Psychology India The Japanese Psychological Association Russian Psychological Society Iranian Psychological Association Caribbean Alliance of National Psychological Associations International Society for Theoretical Psychology European Health Psychology Society British Psychological Society Division of Health Psychology American Psychological Society Division 38 Health Psychology Liberation Psychology Radical Psychology Network Critical Psychology International Society for Critical Health Psychology Science of Psych Public Health A Practical Playbook Health Knowledge Society of Public Health Education Scope - Medical Blog, Stanford iHub Scotland Public Engagement Testing Hypothesis blog Science and You National Co-ordinating Centre for Public Engagement (UK) Society for Science Science Festivals Natural Sciences Collections Association RCUK Concordat for Engaging the Public with Research Publishing Scholarly Kitchen Deakin University Library toolkit for writing papers for publication How to write an academic paper How to write a good article PSA Guide to Publishing Wendy Belcher Writing your paper in 12 weeks European Association of Science Editors - how to write a scientific paper Canadian Science Publishing Retraction Watch Society for Scholarly Publishing Think, check, submit Elgar Blog's tips for getting published Research to Publication Q Qualitative Qualitative Research Practice Qual Page (resources for qualitative researchers) The Qualitative Report Forum: Qualitative Social Research Intersectional Qualitative Research Methods Institute British Psychological Society Qualitative Methods Section Successful Qualitative Research: A practical guide for beginners The Qualitative Researcher
Morgan Centre Manchester's guides to picking, using, transcribing and analysing qualitative data Quality Institute for Healthcare Improvement NHS Scotland Quality Improvement Hub NHS Improvement Science Alert
Questionnaires
PEAS - Practical Exemplars and Survey Analysis
R Realist Evaluation Realist Evaluation Referencing Deakin University Library guide to referencing BibMe Citation Guides Learning Scientist blog's APA Template Guide Reflexivity The reflexive interview and a performative social science Including the researcher in the research Refugee Academics Council for at Risk Academics (CARA) UKCISA guidance for refugee students Refugee Support Network Reproducibility Reproducible Research Research Councils Higher Education Academy Research Council of Norway Africa Research Institute Rural Health Comprehensive Rural Health Project S Safety, self care and wellbeing Participant safety and wellbeing Researcher safety issues Aid Worker Security Relief Web resources on safety and security Dear Student Academic Life Hacker ALCS (author rights) Imposter Syndrome Stylish Academic Academic Mental Health Collective SANG (Sexual Assault Network for Grads) FAR (Faculty Against Rape) EROC (End Rape on Campus) Campus Sexual Violence Resource List AAUP Resources on Sexual Harassment and Assault The Intervention Initiative (UWE) The 1752 Group Science Communication Scicomm Tips Science for the People Science in Public Research Network The Big Picture's Go Further: A practical guide to extended science projects Indian Science Communication Society Science Communication Toolkit Student Science Resources to get you started in Research Communication (Evaluation and Communication in Practice) The Story Collider The Plainspoken Scientist SciComm Central (Facebook Group) LHSTM Sci Comm resources Let's Talk Science United Academics Science With Style Twitter Weave Search Engine* 100 Search Engines for Academic Research Wikipedia list of academic databases and search engines Secondary Analysis Secondary Analysis of Qualitative Data Secondary data analysis: an introduction Self care for academics Academic Kindness Slow Scholarship Conditionally Accepted's Thank a public scholar Doctor Outta Here Social Science* The Social Sciences Consortium Of Social Science Associations (COSSA) What is social science research? The Social Research Association Campaign for Social Science Society for Social Studies of Science The New West (Political Sciences) The Finch and Pea International Social Science Council Economic and Social Research Council's YouTube Channel The Open Notebook Social Science Space Manchester School of Social Sciences e-Source Behavioural and Social Sciences Research African Academy of Sciences Human Sciences Research Council Academy of Social Sciences Sociology British Sociological Association The Sociological Imagination Graham Scambler Mark Carrigan Sociologists for Women in Society Medical Sociology Online Foundation for the Sociology of Health and Illness South African Sociological Association Live Sociology SocRel (Sociology of Religion) Social Ontology SocioResources Understanding Society Simply Sociology Norton Sociology's YouTube channel (lots of methodology films covering diverse research topics) Global Social Theory International Sociology Association Sociology In Focus Stakeholder Stakeholder Analysis Stakeholder Analysis Toolkit Mind Tools Stakeholder Analysis ASA Activity on Stakeholder analysis and stakeholder participation Statistics Radical Statistics StatsUserNet Worldwide List of Statistical Organisations List of academic statistical Associations South African Statistical Society Uganda Statistical Society International Statistical Institute Philippine Statistical Association International Indian Statistical Association Japan Statistical Association International Chinese Statistical Association Iranian Statistical Society Royal Statistics Society American Statistical Association Study Skills Palgrave Study Skills - Research Methods Wiley Exchanges Thinkwell free study planners and guides Cal Newport books and resources
University of Leicester's Graduate School Reading Room James Cook University Workshop Notes
Sage's resources for students

Supervision and Mentoring
Nature's mentoring toolkit Systematic Review Cochrane Collaboration Rapid Reviews The Campbell Collaboration AMSTAR (Assessing Methodological Quality of Systematic Reviews) T Teaching and Learning (Research Methods) Not awful and boring examples for teaching statistics and research methods Higher Education Academy Toolkits Library of Congress Research Tools Center for Innovation in Research and Teaching The Learning Scientists National Collaborating Centre for Methods and Tools The Research Whisperer AJ Juliani blog
Effective and Efficient Faculty Cult of Pedagogy McMaster Institute for Innovation and Excellence in Teaching and Learning
First Nations Pedagogy Pedagogy Ideas (for educators in developing countries)
National Extension College Theatre Theatre of the Oppressed Think Tanks Smith Institute Centre Forum Fabian Society Compass Online Respublica Institute for Public Policy Research New Economics Third Sector Charity Comms Third Sector Trials Open Trials Consort (Transparent reporting of trials) Publish What You Fund Help Make History (explaining and promoting trials, particularly around HIV vaccines) My Trial Buddy American Economic Association's RCT Registry U V Visual and creative methods Literally Science Visual/Method/Culture Spin Weave and Cut Morgan Centre Manchester's guide to ethics in visual research Emotional Methodologies Crafts Council Digital Storytelling Transformative Storytelling for Social Change Learning Over Education Creative Research Methods Research beyond borders Media for Development Social Design Notes 99% invisible Volunteering Learning Service Volunteerics W Writing Skills Developing your writing The Writing Studio Online Writing Lab (OWL) Tweed Editing Shut Up And Write Tuesdays Centre for Writing University of Minnesota Writing for Research National Association of Science Writers
Howard Tilton Memorial Library Writing Guides
PKP School's Writing for Publication tutorials
University of Arizona's Graduate Writing Resource English Communication for Scientists (Nature) American Psychological Association (APA) Writing Style Scholar Shape
Scientist Squirrel - the scientist's guide to writing Minimum standards of reporting guidance Wellcome Science Writing Tips Knight Science Journalism (MIT) resources for science writing Academic Phrasebank Science Writing Resources for Learning (ScWRL) University of British Colombia Raewyn Connell's Writing for Research Explorations of Style Scholar Studio Academic Phrasebank X Y Youth Young Lives Research in Practice Z

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Useful Resources - The Research Companion

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Below is an A-Z of websites, papers, toolkits and other useful stuff to help you on your research journey. I'm always updating this resource so if there's something you think I need to include here please let me know. This is in no way a complete nor systematic list of all resources for the social ...

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ON JULY 12, the Larsen C ice shelf in Antarctica disgorged a chunk of ice the size of Delaware, a small state on America's east coast. America's government seems unfazed by the possibility that such shifts might one day threaten Delaware itself. Its climate defiance grows not only from the power of its fossil-fuel industry and the scepticism of the Republican party, but also from a sense of insulation from the costs of global warming. This confidence is misplaced. New research indicates not only that climate change will impose heavy costs on the American economy, but also that it will exacerbate inequality.

Calculating the economic effects of climate change is no simple matter. It means working out how a given increase in global temperature affects local weather conditions; how local weather affects things like mortality and crop yields; how those changes add to or subtract from regional GDP; and how thousands of local-level changes in GDP add up nationally or globally. No sweat.

The sheer number of moving parts means that the "damage function" used in many papers, which links changes in global temperature to economic costs, is not well characterised. The authors of a new study published in Science aim to firm things up. Solomon Hsiang of the University of California, Berkeley, Robert Kopp of Rutgers University and their co-authors run their climate models repeatedly, for three different temperature scenarios, to see how 15 different economic variables behave in 29,000 possible future states of the world, for each of 3,143 American counties.

Using that information, they assemble probability distributions showing the costs America is likely to sustain by the end of the century. Their findings are stark. Even a modest rise in temperature impairs American economic performance. An increase in global temperature of 1.5°C is very likely to reduce annual output by the end of the century by between zero and 1.7%; a rise of 4°C would probably generate losses between 1.5% and 5.6% of GDP. These figures mask considerable variation across America. In some counties the models forecast a rise in local GDP of 10%; others face a staggering expected decline in annual output of 20%.

It is not surprising that the nationwide costs of climate change should conceal losses in some places and gains in others; that is how averages work. But the distribution of losses matters. The study shows that the pain of climate change will fall more heavily on America's poorest bits than on its richest areas. Falling crop yields and labour productivity, and rising mortality and crime, are expected to be especially pronounced in America's hot southern counties, where incomes are below the national average. In richer New England and the Pacific north-west, in contrast, winters will be milder and less deadly, and agricultural yields may rise. The aggregate economic cost of climate change is reduced because the burden disproportionately falls on those with low incomes, hardly the ideal way to slash the cost of warming.

Climate change is costly in part because its effects are uncertain, impairing investments and other actions which might mitigate its harms. Thus people would be willing to pay some money to know with greater certainty what higher temperatures will mean in future. Uncertainty around economic projections is highest in the poorest counties. For some of these places the worst outcomes could mean GDP losses of 40% or more. The authors reckon that after adjusting for the uncertainty of climate change, and for its unequal effects, the economic damage caused by a global temperature rise of 3°C could be 1.5-3 times bigger than the unadjusted aggregate figures suggest.

Though focused on America, the analysis also describes the world's climate problem. The costs of global climate change will again be unevenly (and uncertainly) distributed, but harm will often be smaller for richer, temperate countries. As a result the estimated economic loss from warming is almost certainly understated, because the nastiest effects are concentrated in places where incomes are lowest: and, correspondingly, where tumbling incomes have the smallest effect on global GDP.

Yet just because a county in Mississippi faces a harsher future as a result of climate change than a county in Washington does not mean Mississippians must fare worse than Washingtonians. The authors hold the distribution of America's population constant in conducting their analysis, but point out that harm could be reduced by large-scale migration. Is that a realistic possibility?

People do move as it grows hotter-but not in a uniform way. Research by Cristina Cattaneo and Giovanni Peri, for instance, shows that migration is an important element of the response to warming in middle-income countries, but that in poorer places the cost of moving locks people in place, amplifying the regressive impact of climate change. What is more, climate change might well require broad migrations from the middle latitudes to countries farther north or south, yet rich-country borders are far less porous (with respect to migrants from poorer countries, at least) than those in the developing world. Even within the large domestic territory of a country like America, mobility cannot be taken for granted; it has been falling in recent decades, even as economic fortunes have diverged and an opioid epidemic has ravaged some parts of the country while sparing others.

Ice in their veins

The rich are disproportionate contributors to the carbon emissions that power climate change. It is cruel and perverse, therefore, that the costs of warming should be disproportionately borne by the poor. And it is both insult and injury that the wealthy are more mobile in the face of climate-induced hardship, and more effective at limiting the mobility of others. The strains this injustice places on the social fabric might well lead to woes more damaging than rising temperatures themselves.

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ON JULY 12, the Larsen C ice shelf in Antarctica disgorged a chunk of ice the size of Delaware, a small state on America's east coast. America's government seems unfazed by the possibility that such shifts might one day threaten Delaware itself.

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The relationship between community engagement and community development | Sustaining Community

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The relationship between community engagement and community development | Sustaining Community

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Community engagement is at the heart of community development.

In her useful discussion of community development, Jessica Smart (2017) discusses the difference between community- based work "which involves the community", and community development, "which is led by the community" (para. 5, emphasis added). She suggests that community-based work is characterised by:

Decision-making power rests with the agency

The problem or issue is defined by the agency

There are defined timelines

Outcomes are pre-specified, often changes in specific behaviours or knowledge levels (Jessica Smart, 2017).

Community development in characterised:

Power relations between agency and community members are constantly negotiated

The problem or issue is first named by the community, then defined in a way that advances the shared interests of the community and the agency

Work is longer term in duration

The desired outcome is an increase in the community members' capacities

The desired long-term outcomes usually include change at the neighbourhood or community level (Jessica Smart, 2017).

As can be seen, one of the differences is that the community is much more engaged in community development. In strengths-based approaches to community development (such as asset-based community development) community engagement is particularly important because of their emphasis on being community led or, as Kretzmann and McKnight (1993) describe it, 'building communities from the inside out'.

Community development, however, involves much more than simply engaging the community. Likewise, community engagement is not simply about community development. As well as its role in community development, community engagement plays an important role in planning and decision-making, and in service delivery.

Even though community engagement is at the heart of community development, it is still important to recognise that they are separate and involve different skills.

It can help to think of the relationship between community engagement and community development as a Venn diagram (above). There is much overlap but they are not the same.
If you liked this post please follow my blog, and you might like to look at:

1. An introduction to community engagement

2. 10 things I've learnt about strengths-based community engagement

3. Bottom-up community development

4. What is asset-based community-driven development (ABCD)?

5. What is the Spectrum of Public Participation?

6. A story of two communities

If you find any problems with the blog, (e.g., broken links or typos) I'd love to hear about them. You can either add a comment below or contact me via the Contact page.
References

Kretzmann, J. P., & McKnight, J. L. (1993). Building communities from the inside out: A path toward finding and mobilizing a community's assets. Evanston, Ill.: Center for Urban Affairs and Policy Research, Northwestern University.

Smart, J. (2017). What is community development? Child Family Community Australia Resource Sheet (January).

About Graeme Stuart

Lecturer (Family Action Centre, Newcastle Uni), blogger (Sustaining Community), environmentalist, Alternatives to Violence Project facilitator, father. Passionate about families, community development, peace & sustainability.

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The relationship between community engagement and community development

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Community engagement is at the heart of community development. In her useful discussion of community development, Jessica Smart (2017) discusses the difference between community-based work "which involves the community", and community development, "which is led by the community" (para. 5, emphasis added). She suggests that community-based work is characterised by: Decision-making power rests with the...