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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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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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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 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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‘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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“Everybody desires a degree of independence”

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“Everybody desires a degree of independence”

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I'm 26, and, like most people my age, building a network of friends and embarking on my career. Unlike most people my age, I'm entirely dependent on carers to achieve this.

Rather than 'carers', I prefer to call my employees 'personal assistants', or 'PAs'. This reframes the dynamic. Instead of coming in to 'look after' me, I employ them to meet my medical needs. As their employer, I have every legal responsibility associated with that role, as well as the moral responsibility to support them in their own careers, but I prefer this to using a care agency. It allows me to decide how I want them to work, and which of my needs I want them to meet.

I do have to decide which needs I want to have met, as the hours I am allocated for support are strictly limited. The current social care crisis is not an abstract concern, for it shapes the very contours of my life. The only reason I am not shut away in a care home is that I have a friend who looks after me all night, every night - drying me when my catheter leaks, getting me medication when my pain spikes, calling ambulances when I develop another life-threatening infection - but my friend has a full-time job and cannot do this forever.

I have applied for funding for the 24-hour care I need, but in the last two years I have met delay after delay, while my life shrinks to the size of my current care plan.

I wake up at 07:30, and my friend gives me what I need before heading to work. There are then two hours before the first carer of the day arrives at 09:30. If my catheter leaks in this period, I am left lying in a pool of urine, unable to do anything except wait. As with all employees, sometimes the PA is late or absent. This may mean waiting even longer, soaking wet, and with a rash spreading across my skin.

Even once the carer has arrived, my options for getting clean are limited. If I want to have a shower, I can't simply go to the bathroom - I need to be lifted into a commode chair, and wheeled out of my building and along to the local sports centre to be showered in an accessible shower, because my flat doesn't have one. This process feels lengthy and undignified - my lower body clad only in a towel - but I have no other choice.

There is very little fully adapted housing stock owned by councils, and the wait for this is long. When I graduated from university, my options were limited - I could move into my parents' house, in a small town, or I could move to London with a housemate. I knew if I ever wanted to build an independent life, I would have to leave home.

The residency requirement for eligibility for council housing in my borough is five years, and there is no adapted housing on the private rental market. The hidden housing crisis experienced by disabled people has left me living in a flat without a bath or shower I can use, without a kitchen I can use, without the adaptions I need to safely use the toilet independently, without the type of hoist that would lift me between chair and bed least painfully, without even a front door I can open independently. If I don't have a carer present, I am imprisoned in my home.

Calculating care time to get control

Limits to the hours of care I get mean that attending a hospital appointment one day might mean being left twisted for hours in agony on a different day without the support to turn from my back to my side. It might mean skipping my bowel programme, and being left bloated and full, so I can perform my poetry at a high-profile event.

Finding enough spare care to go out in the evening is a challenge, and most of my friends are at work during the day. If I want to spend an hour playing with my dog, that's an hour of sacrifice somewhere else. Sacrificing meeting my needs for an hour of pleasure is always painful. Every aspect of my life is a series of calculations, but being supported by a care agency instead would leave me no control over who entered my house or when.

I am not disabled by my body, but by a society that refuses to give me the resources I need to live a self-directed life. It is this society that allocates me limited care hours, forcing me to choose between being clean, dressed and fed, and leaving the house.

Everybody desires a degree of independence, but what do we mean by that word? It seems to me that disabled people are expected to be 'dependent' on the 'goodwill of carers', but we never speak critically of the dependence of non-disabled people on cleaners, say, or supermarkets. In truth, nobody leads an independent life in a society where we all depend on one another.

I aim to value the dependence in my life - to give thanks to the PAs who wash and dress me, and to find the value in being supported kindly. Independence, as a concept, cannot be applied to my life, but self-determination can, and that's surely the core of what independence is. I may need another human being to work as my arms or legs, but I can define my desires and the directions I want my life to take, and that's what is important to me.

The limitations of my body shape my life, but were there a cure I wouldn't take it. I cannot separate the individual - myself - from my experiences, including experiences of pain and serious illness, for had I not had these experiences I would be a different person, and I like who I am. It is the social conditions under which disabled people are forced to live that I would alter.

If I was given the right support, my health conditions would maintain their impact on my life, but I wouldn't also be facing the added social burdens that are put on top of me. Limited social care, being treated as a second-class citizen, barred from many public places and much of the transport system - these are the things I'm hoping to change for future people in my situation.

Still waiting for the right support

Tucked up in bed at 21:00 at the latest, I am then reliant on my unpaid housemate who meets all my needs, but who I disturb as little as possible, because constant night-time interruptions are a challenge for someone who also works a full-time job.

My days start late and end early, a way of managing to ensure I have as much support as I need during the daytime. These limitations are both artificial and unnecessary, a result of a care system not funded adequately to meet the needs of disabled people.

If I had the support I need, I would be able to live a self-directed life - meeting all my medical needs, doing the physiotherapy necessary to control the pain associated with my condition, ensuring my special diet remains varied and full of the necessary vitamins. I would be able to book poetry performances and see friends. I would be able to build an adulthood. Instead, my time is mostly spent inside the same four walls, dreaming of independence.

If you enjoyed reading this story, read more from our In My Own Words series.

Jamie Hale is a poet, writer and researcher based in London. Their work explores the embodiment of queer, trans and disabled experience, the meaning of disability, and the reality of life with severe impairments and gender dysphoria. Jamie has written for a number of publications, including the Guardian and the New Statesman, and has performed as a poet at the Barbican Theatre, London, and Tate Modern, among other venues.

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"Everybody desires a degree of independence"

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I'm 26, and, like most people my age, building a network of friends and embarking on my career. Unlike most people my age, I'm entirely dependent on carers to achieve this. Rather than 'carers', I prefer to call my employees 'personal assistants', or 'PAs'. This reframes the dynamic.

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They want me to come speak, write, design social media campaigns, join their boards, and provide expert advice on autistic community politics that could make or break outreach efforts. The organizations will tell me how much they value my work and how important it is to them. So, logically, I ask to be paid for it. Oftentimes, they are shocked and offended at the very idea. The fact is, “value” isn’t a feeling or a metaphor. “Value” is a number. The things that disability organizations budget for are what they value

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Every week, I get at least a half-dozen requests from disability organizations to volunteer my time to them. They want me to come speak, write, design social media campaigns, join their boards, and provide expert advice on autistic community politics that could make or break outreach efforts. The organizations will tell me how much they value my work and how important it is to them. So, logically, I ask to be paid for it. Oftentimes, they are shocked and offended at the very idea. The fact is, "value" isn't a feeling or a metaphor. "Value" is a number. The things that disability organizations budget for are what they value. And if they don't have paying disabled speakers, writers, and consultants in their budget, they do not actually value us. They do not value us, and we need to start valuing ourselves by not accepting "we don't usually pay," as an answer.

The economic reality of the disability community is stark. The vast majority of disabled adults are unemployed or underemployed. The autistic community experiences one of the highest rate of unemployment of any disability population, despite the fact that many of us have enormous, if somewhat unconventional, talents. By the lowest estimate, two thirds of autistic adults want to work but can't jump through the social hoops of the job interview process. It took me over a year to find a job after I finished my graduate degree. And if, by chance, we do get hired, we often don't last long on the job. For example, I was fired from my first job at a medical journal after a little over a week for being a "bad cultural fit." To this day, I have no idea what that means or what I did wrong. It could mean than I was much weirder than I seemed on paper, and perhaps that didn't fit the company culture. It could be that I said something socially inappropriate, and rather than talk to me about it, my manager decided firing me was easier. I'll never know what happened for certain. At the time, I didn't know I was disabled, so I didn't know what resources were available. I've had time since to become a bit of an expert on employment and disability issues.

Disability employment is an increasingly hot topic. It is one of the topics I am asked to speak and write most about. And the greatest irony of all is, I have had to fight every single employment summit and conference I've spoken at for compensation. Most come around, after I point out the absurdity of promoting autism employment while asking an autistic person to work for free. Others don't. In fact, many feel that by asking me to work for free, they are actually doing me a great service. They are providing me with "exposure." I'm a writer. We have a saying in the writing world: People die of exposure. I can't eat or pay rent with exposure. The idea that disabled people's time and work aren't truly valuable is pervasive. It isn't limited to the autism-sphere, where I do most of my work. And it must stop.

In many ways, disability organizations see us as interchangeable. There are so many disabled speakers, and the bar to entry is low. I have seen program after program for events where, instead of a specific person's name is listed, there are simply the words, "self-advocate." If I refuse to be "self-advocate" in a program, I am seen as easily replaceable. Service providers and people from service provision backgrounds in the nonprofit sector call us "individuals" but don't treat us like we actually are. There's always the threat that the organization that asked me to speak can just get another disabled person who doesn't know any better and has not yet learned how to advocate for his, her, or themselves. The quality of the "self-advocate" is irrelevant, because whatever we say isn't significant. If it was, we would have our names, accomplishments, and credentials published in the program. We're essentially inclusion props.

Disability organizations need to do better. They need to see our expertise. Recently, I was offered minimum wage, 10 hours a week, to be someone's assistant at a national autism nonprofit. I have five year's work experience in the nonprofit sphere and a Master's degree. I've published in multiple major national and international news outlets. I founded my own startup. When I pointed out the offer was insulting given my experience level, I was told "we all need to start somewhere." Obviously, I declined. At this point in my career, I know what I'm worth. And if your organization wants to say you value disabled people and our work, pay us like you actually mean it.

Click here to pitch a blog post to Rooted in Rights.

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If You Really Value the Work of Disabled People, Pay Us For It

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Every week, I get at least a half-dozen requests from disability organizations to volunteer my time to them. They want me to come speak, write, design social media campaigns, join their boards, and provide expert advice on autistic community politics that could make or break outreach efforts.

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 A POSITION STATEMENT FROM THE INDEPENDENT LIVING STRATEGY GROUP

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 A POSITION STATEMENT FROM THE INDEPENDENT LIVING STRATEGY GROUP

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Independent living is what non-disabled people take for granted”

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NAMING OPPRESSION

It has been particularly important to bring to light language that reinforces the dominant culture's views of disability. A useful step in that process has been the construction of the terms ableist and ableism

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disability history museum--Education: Essay: Disability History Museum

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(From Simi Linton, Claiming Disability: Knowledge and Identity. (New York: New York University Press, 1998), pp. 8-17.) The present examination of disability has no need for the medical language of symptoms and diagnostic categories. Disability studies looks to different kinds of signifiers and the identification of different kinds of syndromes for its material.

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Trigger Warning: Ableism, murder of disabled people

In terms of my actual set of abilities, differently abled is, well, actually true. I'm really, really good at certain things, like a lot of the pattern recognition stuff and at writing essays quickly/not needing to edit. I'm not very good at the whole activities of daily living thing. I live in the dorms at school, and I get help from my mother or my ex (we're still good friends) for some of my ADLs (Activities of Daily Living.) Like actually getting laundry done, like keeping my room not a complete disaster and not a fire hazard. If I didn't have a meal plan, they would be helping me with actually getting food. I know how to do laundry and cook, I just have trouble with the executive functioning part of it. So living alone without some sort of help is not a thing I can do. I need a friend/family member who can help me, or I need DD services, or I need to hire someone. Because of my IQ, it's probably going to be friend/family unless/until I can afford to pay a person myself. Which I may well be able to do someday, because there are jobs I can hold with my ability set as long as ableism does not cost me the job. In fact, I have held the same job for just about three years now with an online math education company, grading, writing problems/solutions, being a classroom assistant (answering questions, mostly.) They know I'm autistic, and they're thing is that as long as I can do the job it's fine. So yes, in terms of what my abilities are, what my impairments are, what my "just weird but they pathologize it anyway because society is made of fail"s are, differently abled is true.

[Until you ask the question: different from what? Different how? Why are certain sets of differences called differently abled and not others? What is the unnamed default?]

And yet I won't say that I am differently abled, and I will correct people who call me differently abled. I will also info-dump all the reasons that it's not the language choice I want if you tell me I should be using it. It's soft. It's nice. It also ignores the fact that I am Disabled. I am disabled by society's responses to my actual set of abilities, impairments, and kind of weirds. In many cases it's more by the kind of weirds than the actual impairments, which is... really telling.

I won't let society ignore the fact that they are disabling me. If I'm not supposed to call myself disabled, they can ignore that I am even disabled at all. If they can ignore that I'm even disabled at all (I am, and by the rules and expectations of what I am supposed to be able to do, like use phones and sit still and make eye contact and not need to choose between paying attention and looking like I am paying attention and being able to use speech instead of typing whenever I meet people in person and choosing to do so every time it's possible because that's what's expected even if typing would be much easier and there are certain things I can only communicate that way because I have mental blocks that I'm not supposed to have and it goes on and on...) well, if they don't need to look at my being Disabled, they don't need to look at the ways they are making me disabled. Ableism, institutional and personal, creates disability, and I can't let people forget that because you can't dismantle a system you can't even see, won't even look at. I need the world to look at the way it turns differently abled (different from what? Always ask) into disabled, and I can't do that without calling it what it is made- DISABILITY.

You want it to be called differently abled? Go change the world so that our different sets of abilities really are just different sets and they don't get all kinds of discrimination for being unexpected or (supposedly) wrong sets. Go make sure people don't think existence with my set of abilities is tragic and not worth living and that murdering people for being like me is seen as the murder and horror that it is, not as some sort of mercy killing. Go make sure that the tools we need are in our possession. Go get rid of the access barriers. Make ableism stop being a thing, and we can talk (though lets be real, I'm still going to reject it because of the unnamed default being catered to. In a society where differently abled is a term I could even consider accepting, it's a term that wouldn't even make sense and therefore no one would even have suggested it.) Look at what it is made to be- DISABILITY.

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Trigger Warning: Ableism, murder of disabled people In terms of my actual set of abilities, differently abled is, well, actually true. I'm really, really good at certain things, like a lot of the pattern recognition stuff and at writing essays quickly/not needing to edit. I'm not very good at the whole activities of daily living thing.

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National Center on Disability and JournalismDisability Style Guide

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National Center on Disability and JournalismDisability Style Guide

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The style guide is intended for journalists, communication professionals and members of the general public who are seeking the appropriate and accurate language to use when writing or talking about people living with disabilities. The guide covers general terms and words on physical disabilities, hearing and visual impairments, mental and cognitive disabilities and seizure disorders. Entries are listed in alphabetical order. Click on the index to the left to jump to entries that begin with that letter.

Each entry includes a definition of the word or term, a summary of how it is used or viewed by disability groups and guidance, when available, from The Associated Press Stylebook. Finally, each entry includes the NCDJ recommendation, which strives for accuracy and aims to strike a balance between clarity and sensitivity.

You can also download a printable PDF of this guide by clicking here.

See also: "Terms To Avoid When Writing About Disability"

Background: This term is used to describe someone who does not identify as having a disability. Some members of the disability community oppose its use because it implies that all people living with disabilities lack "able bodies" or the ability to use their bodies well. They prefer "non-disabled" or "enabled" as more accurate terms.

NCDJ Recommendation: The term non-disabled or the phrase "does not have a disability" or "is not living with disability" are more neutral choices. Able-bodied is an appropriate term to use in some cases, such as government reports on the proportion of abled-bodied members in the work force. In some cases, the word "typical" can be used to describe a non-disabled condition.

AP style: Not addressed

Background: Abnormality is a term used to describe something deviating from what is normal. The term can be appropriate when used in a medical context, such as "abnormal curvature of the spine" or an "abnormal test result." However, when used to describe an individual, abnormal is widely viewed as a derogative term. The phrase "abnormal behavior" reflects social-cultural standards and is open to different interpretations.
NCDJ Recommendation:
-The words abnormal or abnormality are acceptable when describing scientific phenomena, such as abnormalities in brain function. However, avoid using abnormal to describe a person.

-Avoid referring to someone who does not have a disability as a "normal person" as it implies that people living with disabilities are deviant or strange. "Typical" is a better choice.

-Be cautious when using the term "abnormal behavior." Explain what it means in the context in which it is being used.

AP style: Not addressed

Background: Addiction is a neurobiological disease, according to the American Academy of Pain Medicine. Its development is influenced by environmental, cognitive and genetic factors. Addiction can be characterized by "impaired control over drug use, compulsive use, continued use despite harm and/or craving." Addiction often implies dependence on substances other than alcohol, although alcoholism is essentially alcohol addiction.

The American Psychiatric Association recommends avoiding the term addict (and alcoholic), suggesting instead the phrase "someone experiencing a drug/alcohol problem." The association also discourages using the term junkie, which specifically refers to someone who misuses heroin.

According to the U.S. Department of Health and Human Services' Center for Substance Abuse Treatment, the term addiction is acceptable for uncontrollable, compulsive use of substances as well as acts such as gambling, sex, working, etc., in the face of negative health and social consequences. The center states that addiction differs from dependence in that dependence only accounts for health problems, whereas addiction denotes use, despite health and social problems (this same distinction applies to alcohol dependence and alcoholism). The center also recommends using the word misuse in place of abuse when describing harmful drug usage.

Avoid the terms clean and dirty concerning drug test results, according to the Center for Substance Abuse and Treatment. The terms are considered derogatory because they equate symptoms of illness to filth. When referring to a drug test, state that the person "tested positive for (drug)."

N CDJ Recommendation: It is preferable to refer to someone who harmfully uses drugs as "someone with a drug addiction." Use recovering or "in recovery from" to refer to someone trying to overcome active addiction, i.e. "someone recovering from a methamphetamine addiction."

AP style: Conforms to AP style, which states that addiction is an acceptable term, although some clinicians prefer "substance abuse disorder." AP also suggests avoiding words like "abuse" or "problem" in favor of the word "use" with an appropriate modifier such as "risky," "unhealthy," "excessive" or "heavy." "Misuse" also is acceptable. Don't assume all people who engage in misuse have an addiction.

Background: These terms carry the assumption that a person with a disability is suffering or has a reduced quality of life. Not every person with a disability suffers, is a victim or is stricken.

NCDJ Recommendation: It is preferable to use neutral language when describing a person who has a disability, simply stating the facts about the nature of the disability. For example: "He has muscular dystrophy" or "he is living with muscular dystrophy."

AP style: Conforms to AP style that suggests avoiding " descriptions that connote pity."

NCDJ Recommendation: Refer to someone who harmfully uses alcohol as "someone with an alcohol problem," "someone living with an alcohol problem," or "someone with alcoholism." Use recovering to refer to someone with the disease of addiction, as in "someone recovering from alcoholism."
Conforms to AP style
Background: Alcoholics Anonymous was founded in 1935 by Bill W. and Dr. Bob S. in Akron, Ohio, according to the AA General Service Office. AA is "a fellowship of men and women who share their experience, strength and hope with each other that they may solve their common problem and help others to recover from alcoholism," according to the group's preamble. AA members do not pay dues or fees; rather, it is supported through contributions. AA is unaffiliated with any outside organizations or institutions and does not endorse, finance or oppose any causes. The AA program is focused on 12 steps people take to achieve sobriety.

NCDJ Recommendation: Because anonymity is central to the organization, disclose that someone is a member of Alcoholics Anonymous only if it is essential to the story. When covering AA, consider referring to members by their first name only unless official references or context requires otherwise. These same considerations apply when covering other 12-step programs, such as Narcotics Anonymous or Gamblers Anonymous.

AP style: AA is acceptable on second reference.
Conforms to AP style
Background: The Americans with Disabilities Act is federal civil rights legislation that was created in 1990 to address discrimination on the basis of disability in employment, public accommodations, transportation and telecommunications as well as state and local government services. The ADA home page is located at: http://www.ada.gov.

NCDJ Recommendation: Use Americans with Disabilities Act on first reference; ADA is acceptable on second reference.

AP style: Not addressed

Background: American Sign Language is a complete language that utilizes "signs made by moving the hands combined with facial expressions and postures of the body," according to the National Institute on Deafness and Other Communication Disorders. Many people in North America who are deaf or hard of hearing use it as a primary means of communication.

The terms "signer" and "interpreter" are often used interchangeably but mean different things. A signer is "a person who may be able to communicate conversationally with deaf persons but who may not necessarily possess the skills and expertise to accurately interpret complex dialogue or information," according to the Massachusetts Department of Health and Human Resources. "To become an interpreter, an individual must not only display bilingual and bicultural proficiency, but also have the ability to mediate meanings across languages and cultures, both simultaneously and consecutively. This takes years of intensive practice and professional training."

NCDJ Recommendation: Specify American Sign Language on first reference, capitalizing all three words. ASL is acceptable on second reference. Use "interpreter" only for those who have completed advanced training. The Registry of Interpreters for the Deaf has a searchable data base of registered interpreters.

AP style: Not addressed

Background: Amputation refers to the removal of a bodily extremity, usually during a surgical operation, for a variety of reasons. Amputee is the acceptable term for someone who has undergone an amputation. Some people have a physical deformity that is not a result of an amputation.

NCDJ Recommendation: "Someone with an amputation" or amputee are both acceptable.

AP style: Not addressed

Background: The diagnosis of "Asperger's syndrome" was removed from the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders in 2012, according to New Scientist. While some patients prefer the label of Asperger's, perceiving it to carry less stigma, the Autistic Self Advocacy Network supports its reference as an autism spectrum disorder. Note the S in syndrome is not capitalized.

NCDJ Recommendation: Ask people if they prefer their condition to be referred to as a form of autism or if they prefer the term Asperger's disorder or Asperger's syndrome. For more information, reference the autism/autism spectrum disorder entry.
Conforms to AP style
Background: ADD and ADHD refer to attention-deficit disorder and attention-deficit hyperactivity disorder, respectively. Both are common mental disorders that manifest primarily in children, according to the National Institute of Mental Health. Common symptoms for both disorders include restlessness, difficulty in focusing or staying organized, and impulsivity. Those with an ADHD diagnosis also exhibit a difficulty in sitting still or engaging in quiet activities. Some debate exists as to the accuracy of an ADHD or ADD diagnosis as an actual disorder.

NCDJ Recommendation: Refer to someone as having attention-deficit disorder or attention-deficit hyperactivity disorder only if the information is relevant* to the story and if a licensed medical professional has formally diagnosed the person. Use "attention-deficit disorder" or "attention-deficit hyperactivity disorder" upon first reference; ADD and ADHD are acceptable for each disorder on second reference, respectively.

AP style: Not addressed

Background: Autism spectrum disorder is a group of complex disorders related to brain development. Common symptoms of autism spectrum disorder include difficulties in communication, impaired social interaction and restricted and repetitive patterns of behavior, interests or activities, according to the National Institute of Mental Health. However, symptoms vary across the spectrum. Some experts classify autism as a developmental disorder rather than a mental illness.

Prior to 2013, subtypes of autism such as Asperger's syndrome, autism disorder and childhood disintegrative disorder were classified as distinct disorders. The fifth edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders consolidates all autism disorders under the larger autism spectrum disorder diagnosis.

Opinions vary on how to refer to someone with autism. Some people with autism prefer being referred to as an "autistic person;" others object to using autistic as an adjective. The Autistic Self Advocacy Network details this debate here.

NCDJ Recommendation: Refer to someone as having autistic spectrum disorder only if the information is relevant* to the story and if a licensed medical professional has formally diagnosed the person. Ask individuals how they prefer to be described. Many prefer to be described as autistic, while others prefer to be described as "an autistic person" or a person with autism.

AP style: The stylebook states that it's acceptable to use the word autism as "an umbrella term for a group of developmental disorders." However, it does not address how to refer to someone with autism.

Background: Bipolar disorder (formerly known as manic depression) is a mental illness believed to be caused by a combination of genetic factors and neurological functioning, according to the National Institute of Mental Health. It is characterized by unusually intense shifts in emotion, energy, behavior and activity levels in what are called "mood episodes." Such episodes are usually classified as manic, hypomanic, depressive or mixed episodes. Bipolar disorder often develops during late adolescence or early adulthood.

AP style: Not addressed

Background: According to the American Foundation for the Blind, the term legally blind denotes a person with 20/200 visual acuity or less. Therefore, blind or legally blind is acceptable for people with almost complete vision loss. Many people with vision loss are not considered blind. The foundation recommends that unless the person refers to himself or herself as legally blind, the terms low vision, limited vision or visually impaired should be used.

NCDJ Recommendation: Use the term blind only when the person has complete loss of sight and the term legally blind when the person has almost complete loss of sight. Other terms also may be acceptable. It is best to ask the person which term he or she prefers and take that into consideration. Commonly used terms include:

Limited vision: Acceptable when a person is not legally or completely blind

Low vision: Acceptable when a person is not legally or completely blind

Partially sighted: Used most often in British publications but acceptable if a person is not legally or completely blind

Visually impaired: This is general term describes a wide range of visual functions, from low vision to total blindness. It is generally considered acceptable, although, like the term hearing impaired, some may object to it because it describes the condition in terms of a deficiency.

AP style: The AP stylebook describes blind as "a person with complete loss of sight" and suggests using the terms "visually impaired" or "person with low vision" for those who have some sight.

Background: A caregiver is an individual who assists another, including a person with a disability, with his or her daily life, according to Merriam-Webster. While caregiver and caretaker are often used interchangeably, they imply something different. As retired clinical psychologist and disability advocate Katherine Schneider notes, "You take care of property... to people you give care." The Alzheimer's Reading Room makes a similar point, recommending the exclusive use of "caregiver."

NCDJ Recommendation: Caregiver is preferable to caretaker when referring to the care of people.

AP style: Not addressed

Catatonic/catatonia

Background: Catatonia is a state in which a person does not move and does not respond to others. According to the National Institute of Health, it is a rare condition that may be associated with other disorders, such as schizophrenia. It is often used informally to describe someone who is in a stupor-like condition.

NCDJ Recommendation: Refer to someone as catatonic only if it is part of a medical diagnosis. Avoid using it casually as it may be offensive and inaccurate.

AP style: Not addressed

Background: Cerebral palsy refers to a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination, according to the National Institute of Neurological Disorders and Stroke. It is not caused by problems in the muscles or nerves but by abnormalities in parts of the brain that control muscle movement. People with cerebral palsy can exhibit a variety of symptoms.

NCDJ Recommendation: It is acceptable to describe a person as "someone with cerebral palsy" or "someone living with cerebral palsy," followed by a short explanation of what the condition entails. When describing specific symptoms, it is always best to ask the person what terms he or she prefers.

Spastic/spaz: Spastic cerebral palsy is a common type of cerebral palsy in which the movements of people with the disorder appear stiff and jerky. It is acceptable to refer to someone as having spastic cerebral palsy, but it is derogatory to refer to someone as spastic or a spaz.

AP style: Not addressed

Background: A cochlear implant is an electronic device that can help a person who is deaf or hard of hearing. The device does not fully restore hearing, but it gives a representation of sounds to help a person understand speech. The device has been criticized by some in the Deaf community who are concerned the device could threaten Deaf culture. However, advocates support the device for suitable candidates.

NCDJ Recommendation: When referring to a cochlear implant, avoid describing it as a corrective device or one that would restore a deaf person to mainstream society. Instead, define it as an electronic device that can assist a person who is deaf or hard of hearing in understanding speech.

AP style: Not addressed

Background: A person who has a congenital disability has had a disability since birth. Common congenital disabilities include Down syndrome and heart-related medical conditions.

NCDJ Recommendation: It is preferable to state that someone is "a person with a congenital disability," "a person living with a congenital disability," "has had a disability since birth," or "was born with a disability." Name the specific disability only when it's pertinent to the story. Avoid the terms defect, birth or defective when describing a disability because they imply the person is somehow incomplete or sub-par.

AP style: Not addressed

Background: These words are used in a variety of contexts but are considered derogatory when applied to a person or people with mental illness.

NCDJ Recommendation: Avoid these words when reporting on mental illness unless they are part of a quote that is essential to the story. Also see entry for "Insane/mentally deranged."
Conforms to AP style
Background: Some people living with mild or moderate hearing loss may affiliate themselves with the Deaf community and prefer the term deaf instead of hard of hearing. Alternatively, some who are deaf and don't have a cultural affiliation to the Deaf community may prefer the term hard of hearing.

Deaf and hard of hearing became the official terms recommended by the World Federation of the Deaf in 1991. Many people in the Deaf community prefer use of a lowercase "d" to refer to audiological status and the use of a capital "D" when referring to the culture and community of Deaf people. The National Association of the Deaf has not taken a definitive stand on this issue.

NCDJ Recommendation: Lowercase when referring to a hearing-loss condition or to a deaf person who prefers lowercase. Capitalize for those who identify as members of the Deaf community or when they capitalize Deaf when describing themselves. Deaf should be used as an adjective not as a noun; it describes a person with profound or complete hearing loss. Other acceptable phrases include "woman who is deaf" or "boy who is hard of hearing." When quoting or paraphrasing a person who has signed their responses, it's appropriate on first reference to indicate that the responses were signed. It's acceptable to use the word "said" in subsequent references.

AP style: The stylebook uses deaf to describe a person with total hearing loss and partially deaf or partial hearing for others. It calls for use of a lower case "d" in all usages.

Background: Indicates a person has some loss of vision and hearing.

NCDJ Recommendation: Use the terms the person prefers.

AP style: Not addressed

Background: Dumb was once widely used to describe a person who could not speak and implied the person was incapable of expressing himself or herself. Deaf-mute was used to refer to people who could neither speak nor hear. People living with speech and hearing disabilities are capable of expressing themselves in writing, through sign language and in other ways. Additionally, a person who does not use speech may be able to hear.

NCDJ Recommendation: Avoid these terms as they are often used inaccurately and can be offensive.
Conforms to AP style
Background: A defect is defined as an imperfection or shortcoming. A birth defect is a physical or biochemical abnormality that is present at birth. Many people consider such terms offensive when describing a disability as they imply the person is deficient or inferior to others.

NCDJ Recommendation: Avoid using defect or defective when describing a disability. Instead, state the nature of the disability or injury.

AP style: Not addressed

Background: A deformity is a condition in which part of the body does not have the normal or expected shape, according to Merriam-Webster Dictionary. Physical deformities can arise from a number of causes, including genetic mutations, various disorders, amputations and complications in utero or at birth. However, the word deformity has a negative connotation that many object to when used in reference to those living with disabilities.

NCDJ Recommendation: Avoid using deformed as an adjective to describe a person. Deformity can be used in some contexts, such as a deformed limb, although it's preferable to describe the specific disability or cause.

AP style: AP medical stories tend to refer to a deformity or deformities rather than describing an individual as deformed.

Background: Dementia is "a general term for a decline in mental ability severe enough to interfere with daily life," according to the Alzheimer's Association. Dementia is not a specific illness; it is a term that refers to a wide range of symptoms. Alzheimer's disease is the most common form of dementia. Other types of dementia include Creutzfeldt-Jakob disease, Huntington's disease, Parkinson's disease and Wernicke-Korsakoff syndrome (previously known as "wet brain").

Common symptoms across forms of dementia include memory loss, difficulty in performing complex tasks, communication difficulties, personality changes and paranoia, according to the Mayo Clinic. In addition to their cognitive component, many types of dementia include physical symptoms as well, such as the abnormal eye movements of Huntington's disease or the tremors associated with Parkinson's disease.

FightDementia.org recommends avoiding the terms demented, dementing, dements, senile, or senility to refer to someone with dementia. The terms senility and senile denote conditions brought on by aging and often are used incorrectly to denote dementia.

NCDJ Recommendation: Refer to someone as having dementia only if the information is relevant* to the story and a licensed medical professional has formally diagnosed the person. Use people-first language when describing someone with dementia, such as "a person with dementia" or "a person living with dementia." Avoid describing someone as being demented or senile.

When possible, reference the specific disease, such as "someone with Huntington's disease" or "someone living with Huntington's disease." When referencing Huntington's disease or Parkinson's disease, do not shorten to Huntington's or "Parkinson's."

AP style: Not addressed

Background: Depression is characterized by a loss of interest in activities, persistent fatigue, difficulty in concentrating and making decisions, persistent feelings of emptiness or hopelessness and abnormal eating habits, according to the National Institute of Mental Health. Its proper name is major depressive disorder. Related diagnoses include seasonal affective disorder (characterized by the "onset of depression during the winter months"), psychotic depression (a combination of psychosis and depression), and postpartum depression (sometimes experienced by mothers after giving birth).

AP style: Not addressed

Background: Diabetes mellitus, commonly shortened to diabetes, refers to a group of metabolic disorders that affect how the human body uses blood sugar (glucose), an important source of energy for cellular tissues, muscles and brain power. According to the Mayo Clinic, someone with diabetes has too much glucose in their blood, however the causes may differ. Chronic diabetes conditions include Type 1 and Type 2. Excess glucose can lead to serious health problems. Diabetes is caused by defects in the body's regulation of insulin, a peptide hormone released by the pancreas. A panel of experts from the American Diabetes Association (ADA) and the American Association of Diabetes Educators (AADE) recently published a Consensus Report called 'The Use of Language in Diabetes'. The ADA/AADE report recommends using people-first language.

NCDJ Recommendation: Avoid referring to an individual as a diabetic (a noun). Instead, use people-first language, stating that someone has diabetes, is living with diabetes or has been diagnosed with diabetes rather than referring to him or her as a diabetic.

AP style: Not addressed.

Background: The Centers for Disease Control defines developmental disabilities as "a group of conditions [that arise] due to an impairment in physical, learning, language or behavior areas. These conditions begin during the developmental period of life, may impact day-to-day functioning and usually last throughout a person's lifetime." Developmental disabilities usually manifest before age 22, and those living with such disabilities often require lifelong or extended individual support. Examples of developmental disabilities include autism spectrum disorder, cerebral palsy, hearing disabilities, intellectual disabilities and visual disabilities. Legal definitions vary from state to state.

NCDJ Recommendation: While it is acceptable to use the term developmental disabilities, it is preferable to use the name of the specific disability whenever possible.

AP style: Not addressed

Background: Disability and disabled generally describe functional limitations that affect one or more of the major life activities, including walking, lifting, learning, breathing, etc. Various laws define disability differently.

NCDJ Recommendation: When describing an individual, do not reference his or her disability unless it is clearly pertinent to the story. If it is pertinent, it is best to use language that refers to the person first and the disability second. For example: "The writer, who has a disability" as opposed to "the disabled writer." When possible, refer to a person's specific condition.

Disability and people who have disabilities are not monolithic. Avoid referring to "the disabled" in the same way that you would avoid referring to "the Asians," "the Jews" or "the African-Americans." Instead, consider using such terms as "the disability community" or "the disability activist."

Disabled People

Background: This is known as identity-first language (in contrast to people-first language). It is the preferred terminology in Great Britain and by a growing number of U.S. disability activists. Syracuse University's Disability Cultural Center says, "The basic reason behind members of [some disability] groups' dislike for the application of people-first language to themselves is that they consider their disabilities to be inseparable parts of who they are." They embrace the terms autistic or Deaf or blind or disabled as their identity.

Several U.S. disability groups have always used identity-first terms, specifically the culturally Deaf community and the autistic rights community. An example of identity-first language: autistic woman instead of woman with autism.

[See the people with disabilities entry for more on people-first language.]

NCDJ Recommendation: Ask the disabled person or disability organizational spokesperson about their preferred terminology.

AP Style: Not addressed

Background: Dissociative identity disorder is characterized by the emergence of two or more distinct personality states or identities in a person's behavior or consciousness, according to the National Alliance on Mental Illness. These personalities, medically known as alters, can exhibit different speech patterns, mannerism, attitudes, thoughts, gender identities and even physical characteristics. Other symptoms include memory problems, emotional issues, disorientation and the development of other mental disorders.

NCDJ Recommendation: Refer to someone as having dissociative identity disorder only if the information is relevant* to the story and if the person has been formally diagnosed by a licensed medical professional. Use the term dissociative identity disorder, not multiple personality disorder, and avoid the acronym DID. Use people-first language, such as "a person with dissociative identity disorder" or "a person living with dissociative identity disorder."

AP style: Not addressed

Other terms commonly used to refer to people living with Down syndrome are intellectually disabled, developmentally disabled or a person who has a cognitive disability or intellectual disability. The Global Down Syndrome Foundation considers all of these terms acceptable, while the National Down Syndrome Society suggests using cognitive disability or intellectual disability.

NCDJ Recommendation: The proper term for the disorder is Down syndrome, not Down's syndrome or Down's Syndrome. Use people-first language, stating that someone "is a person with Down syndrome," "has Down syndrome," or "is living with down syndrome." Avoid using terms such as "suffers from" or "afflicted with" in association with the condition.

The terms intellectually disabled, developmentally disabled, cognitive disability and intellectual disability are acceptable when used in a people-first context to describe someone with Down syndrome, such as "the person has a developmental disability" or is "living with a developmental disability." However, it is more accurate to refer specifically to Down syndrome when that is the medically diagnosed condition.
Conforms to AP style
Background: Dwarfism is a medical or genetic condition that results in a stature below 4'10," according to Little People of America. The average height of a dwarf is 4'0." When used in a non-medical sense, it can be considered offensive, but many view it as the acceptable term for the condition.

The term midget was used in the past to describe an unusually short and proportionate person. It is now widely considered derogatory.

The terms little people and little person refer to people of short stature and have come into common use since the founding of the Little People of America organization in 1957. The appropriateness of the terms is disputed by those within and outside of the organization. Little People of America recommends using the descriptors short stature, little person or "someone with dwarfism."

NCDJ Recommendation: Only refer to a person's short stature if it is relevant* to the story. It is best to ask people which term they prefer to describe them. Avoid the term dwarf unless it is being used in a quote or in a medical diagnosis. Avoid using the terms vertically challenged and midget.

AP style: Dwarf is the "preferred term for people with a medical or genetic condition resulting in short stature." Midget is considered offensive.

Background: Dyslexia is a learning disability characterized by problems identifying speech sounds and learning how to connect them to letters and words, according to the Mayo Clinic. Its chief symptoms include difficulties with spelling, reading, pronunciation of words and processing auditory information. It is a common learning disability among children, although adolescents and adults living with dyslexia often exhibit symptoms as well.

The term dyslexic is used by some organizations as a noun and adjective in a non-pejorative way; however, using the word as a noun (describing a person as a dyslexic) appears to be falling out of use.

NCDJ Recommendation: Refer to someone as having dyslexia only if the information is relevant* to the story and if the person has been formally diagnosed by a licensed medical professional. Use people-first language, stating that someone has dyslexia or is living with dyslexia, rather than referring to him or her as "a dyslexic person." Avoid using dyslexic as a noun (i.e. "She is a dyslexic.").

AP style: Not addressed

Background: Epilepsy is a chronic neurological and developmental disorder characterized by "recurrent, unprovoked seizures," according to the Epilepsy Foundation, which also states that it is the fourth most common neurological disorder. Epilepsy manifests differently in individuals: The severity of epileptic seizures, their occurrence rates and the emergence of other health problems differ from person to person. Epilepsy is most commonly treated with medication but also can include use of medical devices, surgery, diet and emerging therapy methods.

NCDJ Recommendation: Refer to someone as having epilepsy only if the information is relevant* to the story and if the person has been formally diagnosed by a licensed medical professional. Use people-first language, stating that someone has epilepsy, is living with epilepsy or has been diagnosed with epilepsy rather than referring to him or her as an epileptic.

The term seizure is the preferred term when referring to the brief manifestation of symptoms common among those with epilepsy. Avoid stating that the person had a fit or an epileptic fit.

AP style: Not addressed

Facilitated Communication

Background: Facilitated communication is a now-widely criticized communication technique that was popular in the 1990s in American schools, according to an article in the American Academy of Pediatrics . The technique was originally developed to help those living with severe, developmental disabilities such as autism. A nonverbal person would theoretically communicate with the help of a facilitator by typing on a keyboard, pointing to an image, or pointing to letters on an alphabet board. However, studies eventually found there was little scientific evidence to support that the technique actually worked, leading many to conclude the aid was actually the one communicating, according to a study from Emory University .

In an official position statement, the American Speech-Language-Hearing Association warns that any messages extracted from facilitated communication "should not form the sole basis for making any diagnostic or treatment decisions." Other o rganizations , including the American Psychological Association and the International Society for Augmentive and Alternative Communication also oppose facilitated communication.

NCDJ Recommendation: Avoid language that may legitimize facilitated communication. When writing about it, specify that major disability organizations do not recognize facilitated communication as a valid communication technique.

Background: The Oxford English dictionary defines a handicap as "a condition that restricts a person's ability to function physically, mentally or socially."

NCDJ Recommendation: Do not describe a person as handicapped unless it is central to the story. Avoid using handicap and handicapped when describing a person. Instead, refer to the person's specific condition. The terms are still widely used when citing laws, regulations, places or things, such as handicapped parking, although many prefer the term accessible parking.
Conforms to AP style
Background: The term may be used to refer to people who have a mild to moderate hearing loss that may or may not be corrected with amplification. Those who are hard of hearing usually use speech to communicate.

Deaf and hard of hearing became the official terms recommended by the World Federation of the Deaf in 1991. Many people in the Deaf community and organizations, including the National Association of the Deaf, support these terms.

Some people living with mild or moderate hearing loss may affiliate themselves with the Deaf community and prefer the term Deaf. Alternatively, some who are deaf and don't have a cultural affiliation to the Deaf community may prefer the term hard of hearing. Additionally, hard of hearing may also refer to any hearing condition which can be helped by an auditory device, according to the University of Washington .

Recommendation: Hard of hearing is almost always acceptable. However, use the term the person prefers.

AP style: Not addressed

Background: The terms hearing impaired and hearing impairment are general terms used to describe people living with a range of hearing loss from partial to complete. The terms are disliked by many because, like the word handicap, hearing impaired describes a person in terms of a deficiency or what they cannot do. The World Federation of the Deaf has taken the stance that hearing impaired is no longer an acceptable term.

NCDJ Recommendation: For those with total hearing loss, deaf is acceptable. For others, partial hearing loss or partially deaf is preferred. It is best to ask the person which term he or she prefers.

AP style: The stylebook uses deaf to describe a person with total hearing loss. For others, it recommends using partial hearing loss or partially deaf. It does not address use of the term hearing impaired.

High-functioning/low-functioning

Background: High-functioning is a term commonly used to describe people who live with intellectual disabilities as a result of autism or Down syndrome. Someone with high-functioning autism has an IQ of 70 or above, according to Research Autism. There is still debate over whether high-functioning autism is synonymous with Asperger's syndrome; Autism Speaks notes that they "are often referred to as the same diagnosis." "High-functioning Down syndrome" is not an official medical diagnosis.

Many people who live with Down syndrome and their families consider the terms to be dismissive or reductive of a person's abilities. Journalists should consider other ways of describing a person's ability to function in society. For example, they might say that an individual with Down syndrome lives with minimal or no special assistance.

NCDJ Recommendation: Avoid using the term high-functioning in the context of developmental disabilities, unless it is describing a medical diagnosis in relation to autism.

AP style: Not addressed.

Background: Infantile paralysis is short for poliomyelitis and was commonly used in the past to describe polio. Its symptoms include muscle weakness and paralysis. Jonas Salk introduced the polio vaccine in the 1950s and drastically reduced cases of polio in the U.S.

NCDJ Recommendation: Use the term polio rather than infantile paralysis. It is preferable to say "He had polio as a child" or "She contracted polio as an adult" rather than "He suffers from polio" or "He is a victim of polio."

AP style: The preferred word is polio.

Background: The word i njury is commonly used to describe any harm, damage or impairment to an individual as the result of an accident or other event.

NCDJ Recommendation: Refer to injuries as being sustained or received, not suffered, unless the person in question prefers "suffered."

AP style: Not addressed

Background: The terms insane, insanity and mentally deranged are commonly used informally to denote mental instability or mental illness but can be considered offensive. The medical profession favors use of the terms mental disorder or psychopathology. In U.S. criminal law, insanity is a legal question, not a medical one.

NCDJ Recommendation: Use mental illness or mental disorder instead of insane or mentally deranged, except in a quote or when referring to a criminal defense.
Conforms to AP style
Insane asylum/mental health hospital/psychiatric hospital

Background: Hospitals that cared for people with various mental illnesses, often for long periods of time, were once commonly referred to as insane asylums. The term has largely gone out of use as objectionable and inaccurate.

NCDJ Recommendation: Mental health hospital or psychiatric hospital are the preferred terms to describe medical facilities specifically devoted to treating people with mental disabilities.
Conforms to AP style
Background: An intellectual disability is a disability involving "significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills," according to the American Association on Intellectual and Developmental Disabilities. Those with IQ test scores of 75 or lower are considered to have an intellectual disability. Intellectual disabilities typically develop in individuals before the age of 18. This contrasts with congenital disorders such as Down syndrome, which develop before or at birth.

NCDJ Recommendation: Use people-first language, stating that someone is "a person with an intellectual disability" or "a person living with an intellectual disability" rather than referring to the person as intellectually disabled.

AP style: Not addressed

Background: The Oxford English dictionary defines invalid as "a person made weak or disabled by illness or injury." It is probably the oldest term for someone living with physical conditions that are considered seriously limiting. However, it is such a general term that it fails to accurately describe a person's condition and is now widely viewed as offensive in that it implies that a person lacks abilities.

NCDJ Recommendation: Avoid using invalid to describe a person living with a disability except when quoting someone.

AP style: Not addressed

Invisible Disabilities

Background: The majority of disabled people have disabilities or chronic illnesses that are invisible or hidden. Although many in the general public associate disability only with people using wheelchairs or white canes or who are missing limbs, more people have conditions that can't be seen but are defined as disabilities under the 1990 Americans with Disabilities Act.

For example, more than 40 million Americans have hearing difficulties, but most do not use sign language, and many do not use hearing aids. Mental health conditions are a prevalent invisible disability. More than 43 million U.S. adults over 18 have some form of mental illness, according to the National Institute on Mental Health. Many chronic health conditions are also considered invisible disabilities depending on their severity and impact on daily living. Chronic illnesses such as Parkinson's disease, diabetes, lupus, or Crohn's disease may fall into the category of invisible disabilities. Research from Cornell University's Employment and Disability Institute reports that between 2005 and 2010 the most prevalent conditions of people filing employment disability discrimination charges with the Equal Employment Opportunity Commission (EEOC) were invisible disabilities.

NCDJ recommendation: Do not use the term invisible disability without asking the person being discussed or interviewed in the story. Many people with chronic illnesses do not call themselves disabled. If preference is unknown, specify the condition, e.g. Jane Doe, who was diagnosed with lupus in 2010.

AP style: Not addressed

Background: Lame is a word commonly used to describe difficulty walking as the result of an injury to the leg.

Some people object to the use of the word lame to describe a physical condition because it is used in colloquial English as a synonym for weak, as in "That's a lame excuse."

NCDJ Recommendation: Avoid using lame to describe a person living with a disability except when quoting someone.

AP style: Not addressed

Little person/little people

Background: Mental illness is an umbrella term for many different conditions that affect how individuals act, think, feel or perceive the world. Mental illnesses also are known as mental disorders. The most common forms of mental illness are anxiety disorders, mood disorders, and schizophrenia disorders. One in four adults experiences mental illness in a given year, according to the National Alliance on Mental Illness, although severity and symptoms vary widely. For more information on mental illness, see the National Institute for Mental Health.

Because of perceived stigma, some people are calling for an end to the use of the term mental illness, suggesting instead terms such as "person diagnosed with a psychiatric disorder" or "person with a mental health history." However, the term is still widely used within the medical and psychiatric professions.

The American Psychiatric Association offers a useful guide to media on use of appropriate terms. The association recommends using people-first language to describe mental illness in order to avoid defining a person by his or her disability. "She experiences symptoms of psychosis" is preferable to "She is psychotic;" "He is living with bipolar disorder" is preferable to "He is bipolar;" and "She has autism" is preferable to "She is autistic."

NCDJ Recommendation: Refer to an individual's mental illness only when it is relevant* to the story and the diagnosis comes from a proper source. Whenever possible, specify the specific illness a person has rather than mental illness in general. Always refer to someone living with a mental illness as a person first. Use quotes when officials or family members use a term such as "a history of mental illness" to refer to an individual and indicate when appropriate that the diagnosis has not been confirmed. .

Conforms to AP style: The stylebook cautions against describing an individual as mentally ill unless clearly pertinent to a story and the diagnosis is properly sourced. Specific disorders should be used and the source of the diagnosis identified whenever possible.

The Associated Press also warns again drawing a connection between mental illness and violent crime and recommends that any source used to characterize a criminal suspect's mental health history have the authority to speak on the matter. And it cautions against "using mental health terms to describe non-health issues. Don't say that an awards show, for example, was schizophrenic."

Background: There are a number of types of mental health professionals. The following broad definitions are sourced from Psychology Today.

Psychiatrist: A mental health professional able to prescribe psychotropic medications. Some provide emotional therapy as well as medication management.

Psychoanalyst: A specific type of psychotherapist trained to work with both an individual's unconscious and unconscious mind. The field was founded by Sigmund Freud.

Psychologist: A mental health professional trained in the discipline of psychology and who often does psychological testing and research.

Psychotherapist: An umbrella term for mental health professionals trained to treat people for their health problems.

NCDJ Recommendation: Ask the professional how he or should be identified, based on his or her formal training. Avoid using the word shrink in reference a mental health professional except in a quote.

AP style: Not addressed

NCDJ Recommendation: Always try to specify the type of disability being referenced. Otherwise, the terms mental disability, intellectual disability and developmental disability are acceptable. Use people-first language. For example, i nstead of using "the mentally disabled" as a collective noun, use "people with mental disabilities" or "people living with mental disabilities."

At times, words that are considered outdated may be appropriate because of the story's historical context. In those cases, attribute the term or note its historic use. For example, "The doctor said he was retarded, a term widely used at the time."

AP style: Mentally retarded should be avoided. The AP Stylebook suggests using terms such as mentally disabled, intellectually disabled and developmentally disabled. The NCDJ prefers "a person living with a mental disability" rather than "a mentally disabled person."

See entry on Dwarf, little person/midget/short stature

Background: The term was used in the late 19 th century to refer to people who had Down syndrome, due to the similarity of some of the physical characteristics of the disorder to Eastern Asian people who were called Mongoloid, according to the Oxford English dictionary. It is considered a highly derogatory word to describe someone with Down syndrome.

AP style: Not addressed

See entry on Dissociative identity disorder

Background: Multiple sclerosis, or MS, is a disease of the central nervous system that disrupts the flow of information within the brain and between the brain and body, according to the National Multiple Sclerosis Society. MS symptoms vary widely and may include trouble with walking or movement, numbness and vision problems.

NCDJ Recommendation: It is acceptable to describe a person as "someone with multiple sclerosis" or "living with multiple sclerosis," followed by a short explanation of how the disease is manifested in that person. Avoid saying a person suffers from or is afflicted with the disease. MS is acceptable on second reference.

AP style: Not addressed

Background: Muscular dystrophy could refer to any of more than 30 genetic diseases characterized by progressive weakness and degeneration of the muscles that control movement, according to the National Institute of Neurological Disorders and Stroke. Onset could be infancy, childhood, middle age or later.

NCDJ Recommendation: It is acceptable to describe a person as "someone with muscular dystrophy" or "someone living with muscular dystrophy," followed by a short explanation of what the condition entails. Avoid saying a person suffers from or is afflicted with the disease. MD is acceptable on second reference.

AP style: Not addressed

Background: Non-disabled has come into usage as a way to refer to someone who does not have a disability.

NCDJ Recommendation: Non-disabled or "does not have a disability" are acceptable terms when referring to people who do not identify as having a disability. In general, avoid using able-bodied.

AP style: Not addressed

Background: Obsessive-compulsive disorder is an anxiety disorder characterized by unreasonable thoughts and fears that lead to repetitive and often ritualized behaviors or compulsions. OCD may exhibit as a fear of contamination, disarray or intrusion, according to the Mayo Clinic. People living with OCD usually exhibit both obsessions and compulsions but sometimes exhibit only one or the other. OCD is often treated by pharmaceutical drugs, psychotherapy methods or a combination of the two.

NCDJ Recommendation: Refer to someone as having OCD only if the information is relevant* to the story and the person has been formally diagnosed by a reputable source. Do not use OCD as an adjective for someone who obsesses over certain things but has not been formally diagnosed as having OCD. Use obsessive-compulsive disorder on first reference; OCD is acceptable in second reference.

AP style: Not addressed

Background: Paraplegia is defined as the impairment or loss of movement in the lower extremities and torso. It is typically caused by a spinal cord or brain injury. Referring to someone as a paraplegic is offensive to some as it implies that their condition defines them.

NCDJ Recommendation: Avoid referring to an individual as a paraplegic. Instead, say the person has paraplegia. Sometimes people with paraplegia refer to themselves as a "para." If so, use in quotes.

AP style: Not addressed

Background: Hard of hearing is the most common term for those who have a mild to moderate hearing loss that may or may not be corrected with amplification.

NCDJ Recommendation: Ask the individual what term he or she prefers. Otherwise, hard of hearing is almost always acceptable.

AP style: The stylebook recommends using partial hearing loss or partially deaf for those who have some hearing loss.

Background: Members of the disability community argue that characterizing people with a disability as "sick" or referring to them as "patients" connotes that there is something unwell about them or that they are need of medical attention, when, in fact, that may not be the case.

NCDJ Recommendation: Avoid referring to someone with a disability as "sick" or to their disability as a "sickness." If a person is receiving medical treatment, then the word "patient" is appropriate; however, it should be avoided outside of a medical context.

AP Style: Not addressed

Background: This is known as people-first language (in contrast to identity-first language). Those who prefer people-first language say it avoids defining a person in term of his or her disability. In most cases, this entails placing the reference to the disability after a reference to a person, as in "a person with a disability" or "a person living with a disability" rather than "the disabled person." The National Center on Birth Defects and Developmental Disabilities of the Centers for Disease Control & Prevention offers an easy-to-follow guide on people-first language.

[See the disabled people entry for more on identity-first language.]

NCDJ Recommendation: Ask the person with a disability or disability organizational spokesperson their preferred terminology.

AP style: Not addressed

Prelingually deaf/postlingually deaf/late-deafened

Background: Prelingually deaf refers to individuals who were born deaf or became deaf prior to learning to understand and speak a language, according to Gallaudet University, a university for the education of the deaf and hard of hearing in Washington, D.C.

Postlingually deaf or late-deafened describes a person who lost hearing ability after he or she learned to speak a language.

NCDJ Recommendation: The terms are acceptable, although explanation may be required for a general audience.

AP style: Not addressed

Posttraumatic Stress Disorder (PTSD)

Background: Posttraumatic Stress Disorder (PTSD) is an anxiety disorder generally caused by undergoing an extremely emotional traumatic event, according to the National Center for PTSD. Such events may include assault, war, sexual assault, natural disasters, car accidents or imprisonment. Symptoms may include reliving the traumatic event, avoidance of certain behaviors, negative emotions or physical symptoms such as dizziness or nausea.

NCDJ Recommendation: Refer to someone as having PTSD only if the information is relevant* to the story and the person has been formally diagnosed by a reputable source. Post-traumatic stress disorder is correct on first reference; use PTSD on second reference.

The term flashback may be used to denote reliving an event that triggered the PTSD.

AP style: Posttraumatic Stress Disorder is a type of mental illness. PTSD is acceptable on second reference.

Background: Psychosis is a broad term used to describe symptoms of certain mental health problems. Symptoms may include delusions or hallucinations or other loss of contact with reality. People with psychosis are described as psychotic. In common usage, psychotic often is used in the same way as the word crazy, and thus can be offensive and inaccurate.

NCDJ Recommendation: Use the words psychotic and psychosis only when they accurately describe a medical experience. Avoid using psychotic to describe a person; instead refer to a person as having a psychotic condition or psychosis. Avoid using the terms colloquially.

AP style: Not addressed

Background: Quadriplegia is defined as the partial or total loss of use of all four limbs and torso. It often is caused by a spinal cord or brain injury and is characterized by the loss of sensory and motor function. Paraplegia is similar but does not affect the arms. People living with these conditions often are referred to as quadriplegics and paraplegics, but these terms are considered offensive by some. May also be referred to as tetraplegia.

NCDJ Recommendation: Use people-first language, such as "a person with quadriplegia" or "a person living with quadriplegia" rather than quadriplegic, since this implies that the condition defines them. Sometimes people with quadriplegia refer to themselves as "quads." If so, use in quotes.

AP style: Not addressed

See entry on mentally retarded, mentally disabled, intellectually disabled, developmentally disabled

Background: Schizophrenia is a severe and chronic mental illness characterized by distorted recognition and interpretations of reality, affecting how an individual thinks, feels and acts, according to the National Institute of Mental Health. Common symptoms include visual and auditory hallucinations, delusional and disordered thinking, unresponsiveness, a lack of pleasure in daily life and other social issues. It does not involve split personalities. Less than one percent of the general population has schizophrenia, and it is treated mostly through the use of pharmaceutical drugs.

NCDJ Recommendation: Refer to someone as having schizophrenia only if the information is relevant* to the story and if the person has been formally diagnosed by a licensed medical professional. Use people-first language, stating that someone is "a person with schizophrenia," "a person living with schizophrenia" or "a person diagnosed with schizophrenia" rather than a schizophrenic or a schizophrenic person. Do not use the word schizophrenic colloquially as a synonym for something inconsistent or contradictory.

AP style: Schizophrenia is classified as a mental illness. The stylebook cautions against using mental health terms to describe non-health issues. "Don't say that an awards show, for example, was schizophrenic."

Service animal/assistance animal/guide dog/Seeing Eye dog

Background: Service animals are trained animals, mostly dogs, which provide services to people with disabilities. They also are sometimes called "assistance animals," "guide dogs," or "Seeing Eye dogs."

The federal definition of a "service animal" applies to "any guide dog, signal dog or other animal trained to do work or perform tasks for the benefit of an individual with a disability." This may include animals that guide individuals living with impaired vision, alert individuals with impaired hearing to intruders or sounds, provide minimal protection or rescue work, pull a wheelchair or fetch dropped items. If they meet this definition, animals are considered service animals under the ADA, regardless of whether they have been licensed or certified. For more information, go to http://www.ada.gov/qasrvc.htm.

NCDJ Recommendation: Service animal, assistance animal and guide dog all are acceptable. Avoid use of Seeing Eye dog as Seeing Eye is a registered trademark of The Seeing Eye school in Morristown, N.J. Be aware that the issue of licensure and/or certification of service animals is a contentious issue in the disability community, so it may be best to refer to the federal definition.

AP style: There is no entry for service animal. The stylebook notes the Seeing Eye dog trademark and suggests that guide dog be used instead.

See "Dwarf/little person/midget/short stature"

Background: The term "special needs" was popularized in the U.S. during the early 20 th century during a push for special needs education to serve people living with all kinds of disabilities.

The word "special" in relationship to those living with disabilities is now widely considered offensive because it euphemistically stigmatizes that which is different.

NCDJ Recommendation: Avoid using these terms when describing a person living with a disability or the programs designed to serve them, with the exception of government references or formal names of organizations and programs. It is more accurate to cite the specific disability or disabilities in question. The term "functional needs" is preferred when a term is required. For example, "addressing the functional needs of people living with disabilities" could be used when referring to a facility or program.

AP style: Not addressed

NCDJ Recommendation: It is acceptable to describe a person as "someone with spina bifida" or "someone living with spina bifida," followed by a short explanation of what their condition entails.

AP style: Not addressed

There is some ambiguity about the difference between stuttering and stammering and which term is appropriate in different contexts. However, organizations such as the NIDCD, Mayo Clinic and the National Stuttering Association generally use the term stuttering to refer to the speech disorder. The Diagnostic and Statistical Manual of Mental Disorders debuted the new term "childhood-onset fluency disorder" to refer to stuttering, along with a few new criteria for its diagnosis. However this term is not yet widely used.

NCDJ Recommendation: The word stuttering is preferred over stammering. Do not refer to an individual as a stutterer. Rather, use people-first language, such as "a person who stutters." Refer to stuttering only if it is relevant* to the story.

AP style: Not addressed

Suffers from/victim of/a fflicted with/stricken with

Background: These terms carry the assumption that a person with a disability is suffering or has a reduced quality of life. Not every person with a disability suffers, is a victim or is stricken.

NCDJ Recommendation: It is preferable to use neutral language when describing a person who has a disability, simply stating the facts about the nature of the disability. For example: "He has muscular dystrophy" or "he is living with muscular dystrophy."

AP style: Conforms to AP style that suggests avoiding " descriptions that connote pity"

Background: The World Health Organization recommends avoiding language that sensationalizes or normalizes suicide or presents it as a solution to problems. For example the terms "failed attempt" or "successful/completed attempt" depict suicide as a goal, project or solution. Some argue that the term "commit" implies that suicide is a criminal act, while others suggest that the term "commit" is neutral.

NCDJ Recommendation: The NCDJ endorses the AP style listed below.

AP style: Generally, AP does not cover suicides or suicide attempts, unless the person involved is a well-known figure or the circumstances are particularly unusual or publicly disruptive. Suicide stories, when written, should not go into detail on methods used. Avoid using "committed suicide" except in direct quotations from authorities. Alternate phrases include "killed himself," "took her own life" or "died by suicide." The verb "commit" with "suicide" can imply a criminal act. Laws against suicide have been repealed in the United States and many other places. Do not refer to an "unsuccessful suicide attempt." Refer instead to an "attempted suicide." "Medically assisted suicide" is permitted in some states and countries. Advocacy groups call is "death with dignity" or "right-to-die," but AP does use those phrases on their own. When referring to the legislation whose name includes "death with dignity," "right-to-die" or similar terms, say the law or proposal allows "the terminally ill to end their own lives." If the term is in the name of a bill or law, make that clear. "Euthanasia" should not be used to describe "medically assisted suicide" or "physician-assisted suicide."

Background: Tetraplegia, used interchangeably with quadriplegia, is defined as the paralysis of all four limbs as well as the torso. It often is caused by a spinal cord or brain injury and is characterized by the loss of sensory and motor function. Paraplegia is similar but does not affect the arms. People with these conditions often are referred to as quadriplegics and paraplegics, but these terms are considered offensive by some.

NCDJ Recommendation: Use people-first language, such as "a person with tetraplegia" rather than tetraplegic, since this implies that the condition defines them. See also quadriplegia.

AP style: Not addressed

While those living with Tourette syndrome often can suppress tics by focusing on them, the disorder also can be treated with medication, relaxation techniques and therapy. Although involuntary cursing is commonly thought to be a key trait of the disorder, only a minority of those with Tourette syndrome exhibits this symptom.

Terminology for the disorder is varied. It is interchangeably referred to as Tourette syndrome, Tourette's syndrome and Tourette's disorder. However, prominent mental health organizations such as NINDS, the Mayo Clinic, the Centers for Disease Control and Prevention, as well as the Tourette Syndrome Association refer to it as Tourette syndrome.

NCDJ Recommendation: Use Tourette syndrome, with no possessive or capitalization of syndrome. Refer to someone as having Tourette syndrome only if the information is relevant* to the story and if the person has been formally diagnosed by a licensed medical professional. Use people-first language, stating that someone is "a person with Tourette syndrome," "a person living with Tourette syndrome" or "a person diagnosed with Tourette syndrome." Avoid the acronym TS as it is not widely known.

AP style: Not addressed

Background: Treatment is defined by the American Society of Addiction Medicine as the use of any planned, intentional intervention in the health, behavior, personal and/or family life of an individual living with alcoholism or another drug dependency designed to achieve and maintain sobriety, physical and mental health and maximum functional ability. A treatment center is an establishment usually run by psychiatric or medical professionals.

NCDJ Recommendation: Treatment is an acceptable term for medical interventions, and treatment center is acceptable for the establishment in which such practices take place. Use treatment center in place of rehab or detox center. A person enrolled in a treatment center should be referred to as a patient.

AP style: Not addressed

Background: A vegetative state is defined as the absence of responsiveness or consciousness in which a patient shows no awareness of his or her environment. Patients may exhibit eye movements and other involuntary movements. A minimally conscious state is one in which a patient has some awareness of self and/or the environment. Referring to a person in a vegetative state as a vegetable is considered offensive.

NCDJ Recommendation: It is preferable to use precise medical terminology or, if that is not possible, terms such as comatose or non-responsive. If using the term vegetative state, use people-first language, such as "a person in a vegetative state." Avoid referring to someone as a vegetable or "veg" as such words dehumanize the person.

AP style: The stylebook allows the use of vegetative state, describing it as "a condition in which the eyes are open and can move, and the patient has periods of sleep and periods of wakefulness, but remains unconscious, unaware of self or others."

Wheelchair/wheelchair-bound/confined to a wheelchair

Background: People who use mobility equipment such as a wheelchair, scooter or cane consider their equipment part of their personal space, according to the United Spinal Association. People who use wheelchairs have widely different disabilities and varying abilities.

NCDJ Recommendation: It is acceptable to describe a person as "someone who uses a wheelchair," followed by an explanation of why the equipment is required. Avoid "confined to a wheelchair" or "wheelchair-bound" as these terms describe a person only in relationship to a piece of equipment. The terms also are misleading, as wheelchairs can liberate people, allowing them to move about, and they are inaccurate, as people who use wheelchairs are not permanently confined in them, but transfer to sleep, sit in chairs, drive cars, etc.
Conforms to AP style
*Relevant: In this guide, we urge reporters and other communications professionals to refer to a disability only when it's relevant to the story being told. But what is "relevant" is not always clear. Should a story about residents complaining about noisy airplanes flying over their houses note that one of the residents who is complaining uses a wheelchair? Should someone who is blind be identified as such in a story about people who have been stranded while hiking and had to be rescued?

In the first case, we suggest the answer is "no." The fact that someone uses a wheelchair does not make the airplane noise any more or less irritating. In the second case, the answer is "maybe." If the hiker's blindness contributed to him or her getting stranded, making note of that fact is relevant. If the person's sight had nothing to do with the situation, leave it out.

When in doubt, ask the person involved. People living with disabilities often complain that their disability is mentioned even when the story has nothing to do with their disability.
This stylebook represents the combined efforts of Lily Altavena, Jason Axelrod, Richard J. Dalton, Jr., Jake Geller, Kristin Gilger, Lauren Loftus and Theresa Poulson, all associated with the National Center on Disability and Journalism at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University. For suggestions and comments, please go to http://ncdj.org/about/contact/.

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The style guide is intended for journalists, communication professionals and members of the general public who are seeking the appropriate and accurate language to use when writing or talking about people living with disabilities. The guide covers general terms and words on physical disabilities, hearing and visual impairments, mental and cognitive disabilities and seizure disorders.

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3 Reasons to Say “Disability” Instead of “Special Needs"

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3 Reasons to Say “Disability” Instead of “Special Needs"

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My Facebook exploded the other day.

I had posted a question about "special needs" and "disability", wondering if anyone would participate in a pro/con series I was thinking of running on this blog about the words. What emerged instead was a huge discussion between my disabled activist friends (and to be clear, they are adults with different disabilities; all with at least one disability) and my friends from the parent community of kids with disabilities.

In many ways, it was a reflection of where I stand at my life, at an intersection between communities. I'm in the parent community of kids with disabilities as my daughter has Down syndrome. I'm in the disabled community by dint of being deaf, bi-polar, with TBI and PTSD. Oh, and I'm an activist probably because I was born in the year of the Water Ox - it's in my nature.

But that's all kind of beside the point.

The point is, I asked a simple question and it exploded, which tells me very clearly that these words still bear discussion. Or rather, the swap from saying "special needs" to "disability" needs to happen, and parents of kids with disabilities need to understand why.

Reasons to Say "Disability" Instead of "Special Needs"

1. People with disabilities want you to

In and of itself, this is really the only answer anyone should need: people with disabilities want you to.

Parents of kids with Down syndrome have been on a campaign to stop the use of the word, "retard," first and foremost because people with Down syndrome have asked us to stop saying it. Regardless of how it makes sense or not to people, we ask that people "spread the word to end the word" - quit saying the "r-word."

Adults with disabilities ask that you say "disability" and not "special needs" when you are talking about disability. As Louisa Shiffer said,

Disabled people should control the conversation about their disabilities, and the language used about them, not their parents.

Your child with autism, Down syndrome, cerebral palsy, deafness, brain injury, dyslexia, spina bifida, blindness, muscular dystrophy - all of it - every one of them counts as a disability, and adults from every one of those communities identifies as being disabled.

That doesn't mean every adult from those communities, just like not every adult with Down syndrome is asking you to quit saying the r-word; but enough of them, the majority of them, identify as having a disability, not a special need.

I myself hiccupped there. I thought that you could have a special need and not a disability, that is, that one could have an IEP for something not necessarily disability-related.
Wrong!
It's all disability related if they receive an IEP. Anyone with an IEP has a disability; anyone receiving services or accommodation under section 504 or the IDEA has a disability.

Calling it "special needs" then makes as much sense as saying "handicapped" - it's an antiquated, inapplicable term. Rather than saying "special needs," it should simply be "services for students with disabilities."

Point blank. Call it what it is.

Say the word: disability.

In the words of Lawrence Carter-Long:

A need isn't special if other people get to take the same thing for granted.

3. All the Other Words Make Us Gag

"Handi-capable", "People of all abilities", "Different abilities", "Differently abled" can be lumped together with "special needs." They all sound patronizing, condescending.

And they are all inaccurate, unless you are talking about every single person in the entire world. In which case you are losing at trying to label the population you wanted to identify in the first place.

"Handi-capable", "People of all abilities", "Different abilities", "Differently abled" and "special needs" were made up outside of the disabled community, by people without disabilities. Their continued use, and the defense of their use by people without disabilities reeks of able-splaining; that is, people without disabilities explaining disability to people with disabilities.

Kind of like man-splaining (men explaining womanhood to women), or white-splaining (white people explaining the black experience to black people). None of these "splaining" bits work well because no given population - especially a population which regularly faces and battles with oppression and discrimination - want to have their experience described to them, or be told how they should want to define themselves.

My brain and ears work in different ways than most people's, they qualify me as having a disability. Now, that means that I will react, process, hear, absorb and perceive in accordance with my disabilities but it does not mean that I have a different ability. It will mean that I require accommodation, but not a "special need" because all people, with and without disabilities, require accommodation. The difference in the case of disability is that most of us know exactly what we need to be able to work and learn effectively. Most of the mainstream (non-disabled) population does not, and they play a guessing game throughout life in trying to figure it out.

Back to my Facebook page.

I realized in reading the discussion that ballooned around the words "disability" and "special needs" that this really wasn't a pro/con subject. You don't, after all, set up a pro/con conversation for the word "retard" or the word "negro." You know you don't say those words anymore; their period of use is over. We've moved on.

In this case, we've moved on to "disability" - a word that seems so imperfect when you look at 'Dis' in Latin; which a Latin prefix meaning "apart," "asunder," "away," "utterly," or having a negative, or reversing force.

But, if you look a little further down on that very same page in the dictionary there is another root of the word 'Dis', as pointed out by Heather Watkins and Lawrence Carter-Long:

Latin (akin to bis, Greek dís twice); before f, dif-; before some consonants, di-; often replacing obsolete des- < Old French

The PIE root is a secondary form of *dwis- and thus is related to Latin bis "twice" (originally *dvis) and to duo, on notion of "two ways, in twain." ...hence *another* way of doing and being..

'Dis' = Another Way of Doing and Being

"Disabled" meaning an ability to do or be something in another way.

"Disability" meaning an ability to do or be in another way.

Then the word "disability" makes complete sense. Those of us living with a disability are absolutely living a dual existence: we move through the mainstream world which is largely inaccessible and not disabled, and we have our own experience with the fact of our bodies.

We see, hear, speak, think, learn, process, read, write, move, and/or feel in ways that are less common than most. We have a lot to offer, by dint of our experience with disability and where our interests lie. Our needs are not special, so please: say the word, as we are asking you to.
Disability.

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3 Reasons to Say "Disability" Instead of "Special Needs"

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My Facebook exploded the other day. I had posted a question about "special needs" and "disability", wondering if anyone would participate in a pro/con series I was thinking of running on this blog about the words.

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Diversity and inclusion at work: facing up to the business case

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Assessing the evidence on the outcomes of diversity at work, the barriers keeping inequalities in place and how organisations can tackle these to make work an equal business

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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.

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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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Impairment and disability: a world of difference

Disabled people use the term ‘impairment’ to talk about their medical condition or diagnosis or description of their functioning.  On the other hand, ‘disability’ describes the social effects of impairment.

‘Disability’ is not a description of a personal characteristic. A disabled person is not a ‘person with a disability’ as the person does not ownthe disability in the way that you might be ‘a person with brown hair’. Consequently, the opposite of ‘disabled’ is not ‘able-bodied’ or ‘abled’, but ‘non-disabled’ or ‘enabled’.

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Disability Equality - UK perspective.docx

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I’ve been struggling recently to find a more nuanced language to describe different aspects of ‘disability’ more accurately. We tend, I think, to use very few words to describe what is different: impairment, difficulty, allies, people in receipt of a certain type of oppression, a discrimination with a specific character and the negative outcomes of systemic inequality for a named group

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I've been struggling recently to find a more nuanced language to describe different aspects of 'disability' more accurately. We tend, I think, to use very few words to describe what is different: impairment, difficulty, allies, people in receipt of a certain type of oppression, a discrimination with a specific character and the negative outcomes of systemic inequality for a named group. The way I see it disablism, or ablism, is a distinct form of discrimination. Therefore, the prejudice is creates is different too - no better or worse than others - but it has a unique character of its own. It's this understanding, the characteristics of the prejudice, I wish I could articulate this more clearly in conversation. Because talking about one's impairment, or having a discussion about the right to support, are two completely different conversations. If we had more words, each with specific meaning, we could address the different perspectives of ablism more clearly. We may also become better allies. In a similar way that I can make a choice to be anti-sexist in my daily activity by being a Feminist. But there's no word for anti-ableist ... yet! ( although I have explored the activist role before and Chapman, 2013)

I love it when a new word gains currency. And yes! You've probably heard of mansplaining. I didn't take the word to seriously at first. It felt a little clunky and too radical. But I've changed my mind, because over the last few months I've noticed examples in growing number. 'Red car syndrome': you buy a red car and suddenly they are everywhere!!! The word is defined by the the Miriam-Webster dictionary the definition is:

Mansplaining is, at its core, a very specific thing. It's what occurs when a man talks condescendingly to someone (especially a woman) about something he has incomplete knowledge of, with the mistaken assumption that he knows more about it than the person he's talking to does.

I'm listening to a guy mansplain economics to his wife.

Apparently you can't sell a second-hand car for as much as a new one. So glad he mansplained that to me.

I've noticed that since I have known the word, I have been more able to use it to describe a distinctive prejudice with a specific behaviour. Bias happens when our language betrays our beliefs before our minds can catch up. When the stereotypes we hold about others escape before we can think more respectfully about how to phrase our thinking.

Having a word that eloquently describes the type of comments that ride roughshod over someone's ability to think makes it easier to highlight bias. I would like to think that most comments delivered with sexist intent are not meant. However, they do hurt, and are all too often belittling, oppressive or disempowering (Gladwell, 2008) .

Soooo ablesplaining!?! Well, similarity, it's the comments people make to disabled individuals without thought. Typically, they sound inoffensive, but they hold assumptions we haven't fully thought through - or had a chance to contradict. They often imply that disabled people have less, if any, experience or expertise. [I say we, because disabled people do it to.] The unacknowledged feeling of superiority comes from being more able. Examples include:

You could argue these are kind and caring statements. However, underneath the good intent lurks a belief that:

We've not managed our condition for years - infantilisation. Stereotype: disabled people are children or have a 'mental' age [sic].

We've not read, talked about, and thought about our experience or gained knowledge relating to our what matters to us. For example, reading lots on how to deal with what causes huge pain and on-going suffering. Stereotype: disabled people are stupid and need [medical] care.

We are not capable of great successes, sometimes greater than our peers given the extra myriad of barriers we overcome. Stereotype: There's a single scale for achievement so disabled people can't reach the excellence end of it.

We are expected to be a bit crap! Stereotype: disabled people are less capable and more generally a bit worthless - see media coverage .

We have hours to fill in our empty lives. Stereotype: incapable of real work we have time to use up while on benefits.

As ever, people that think hard and challenge disablist assumptions, don't often offend. We now acknowledge that this type of bias is unconscious. But I have lost count of the times I have been told how to live my life, run my business, or deal with my conditions. Which given my age, I've had plenty of time to reflect on. I'm always struck how quickly some people launch into giving me advice on things they've comparatively little experience of themselves.

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I've been struggling recently to find a more nuanced language to describe different aspects of 'disability' more accurately. We tend, I think, to use very few words to describe what is different: impairment, difficulty, allies, people in receipt of a certain type of oppression, a discrimination with a specific character and the negative outcomes of systemic inequality for a named group.

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Yes, if it's a choice: respectful-activism!At first blush it's an easy question, but is it? I received this question in an email recently from my friend Judith, and it really made me thin

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At first blush it's an easy question, but is it? I received this question in an email recently from my friend Judith, and it really made me think. I've never really questioned my identity in this way, but I do increasingly these days - I am a Ph.D student, you question everything! I had an accident at birth, so from the age of 3, when I was diagnosed with cerebral palsy by a nun, I was labelled disabled - no question. It's no biggie, it's my normal, I have had no other experience to compare it to. Sadly, looking back for years I saw it as a binary option. T he choice being: disabled or non-disabled. In all honesty I think it took precedence over being a woman, in my heart I had a third gender....

I few years ago a very strange thing happened, I got a lesson in feminism from a man. On a train to work, I heard a podcast about a man's journey to feminism [ Alan Bissett ]. He explained he had had his epiphany when he chose the radical writings of Andrea Dworkin as an antidote to his growing addiction to porn (Really!?). Bissett's thoughts made me realise that feminism is a continuum, from uninterested to radicals, women and men can essentially choose to embrace feminist ideas - or not.

As a woman I hadn't yet articulated this choice fully. On that day, I moved mindfully to a place on within a group, non-practising or radical, the choice was mine. My badge is one of respectful-activism. I use feminist ideas in my work, research and governance. I acknowledge the oppression women face in a global context every day. The point I'm labouring, is that it is an activity! It is something I do, it is not something I am. I could be a non-feminist woman, I had to step up and consciously think about sexism. I had to think about how sexism affects women in different contexts, and articulate clearly the power imbalance women and men live with in localities, institutions and globally. My choice.

Well if it means having an impairment, cognitive difference or condition - yes I qualify. But if it means understanding disablism and standing as a respectful-activist against ableism then that's a choice. It means being aware that as a group:

Disabled people are significantly more likely to experience unfair treatment at work.

- A higher proportion of individuals who live in families with disabled members live in poverty.
- Disabled people remain significantly less likely to be in employment than non-disabled people.
- Over a quarter of disabled people say that they do not frequently have choice over their daily lives.
- Disabled people remain significantly less likely to participate in cultural, leisure and sporting activities.

Ableism, takes things further, and can be a more aptly descriptive word for the character of disabled people's oppression. The stereotypes expressing 'less able'. It's possible that one day ablism will replace disablism. In the same way that sexism replaced misogyny.
These days when I say I'm disabled it's in recognition that I am one of many in a civil rights group - the disability movement. It's more than an identity - it's an activity! Again, it's what I do, not who I am. I can't tell whether Judith has an impairment or not - that's personal information. In any case, in my view it's not right to exclude people from a civil rights movement - the more allies we have the stronger our voice. Furthermore, if men can be feminists, then non-disabled people too have a role in eradicating ablism. To be blunt, disablism really isn't my own personal problem, and it is in our society's interest to address it, to this end we need many committed individuals. Allies are those that acknowledge their privilege and still express a heart for activism - however radical. In this way I stand as an ally against racism, while I recognise my privilege in whiteness. I speak as a narrator not an author, beside the black community that are in receipt of racism. As I would like to experience the same understanding for my experience of disablism from anyone prepared to stand against it.

Lets not either ride roughshod over the successes of the disabled people that lay down their lives to change ours! Their ideas defined the direction of a revolution! Admittedly, some were probably the most privileged of a much larger group. But let's not bash the changes made possible by privilege owed to whiteness, affluence or class. I would like to be more mindful and more inclusive in my way of appreciating a diverse group; and respect uniqueness and personal sensitivity. We need to encourage multiple ideas and varied activities - not constrict through binary options. For research purposes the position Judith chooses to take, I think, depends on choice not a notion of ability. Being a disabled researcher can put emphasis on individuality, but that researcher cannot author other people's stories - only their own. They can interpret, and narrate, a telling of the group's story, if understand and acknowledge the journey travelled by its people. My experience as a disabled-French-woman is unique, and therefore as valuable as any other researcher's, having an impairment or 3 doesn't define me. My subjectivity needs qualifying, my lens for interpretation , as well as the badge, label, or group alignment of my choice.

I like Coleman's (2011) idea that 'there are more differences between women, than between women and men'; or disabled people and non-disabled people.

© Laura (Mole) Chapman 2016

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Am I disabled? Yes, if it's a choice: respectful-activism!

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At first blush it's an easy question, but is it? it really makes me think, I've never really questioned my identity in this way, but I do increasingly these days - I am a Ph.D student, you question everything! I

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Impairment and disability: a world of difference

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Impairment and disability: a world of difference

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The disability movement in the UK  has used the term disabled for many years now to underscore the idea that disablism is a social problem, not simply a personal difference or deficit.  The following outlines the disability theory, generally referred to as Medical Model and Social Model thinking, that those of us committed to applying Disability Equality in our work have used for a while now.

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The the disabled people's movement in the UK has used the term disabled for many years. It was chosen to underscore the idea that dis/ableism is a social problem. Being disabled is about environment and culture, not simply about personal difference or physical deficit.
The following outlines the disability theory, generally referred to as the Medical Model and Social Model of disability. It refers to the knowledge and activism of those committed to applying Disability Equality in practice. Please appreciate not all disabled people agree, like people within the feminist movement there are radicals, moderates and non-subscribers! However, particularly for those working in the public spheres (writers, campaigners, activists), the use of specific words are employed to honour the legacy of the people that have lead the disability moment.

As part of my Ph.D research recently, I read over 900 journal abstracts on "disability". I then used both professional judgement and personal experience, to draw some hesitant conclusions. I found that I could feel to some extent whether the articles honoured the voice of disabled people by the words authors used. Even where I felt authors struggled withthe exact words, the meaning came across strongly as the voice of an 'ally' or an 'advocate'. In this blog I use older ideas related my work on dialogue to help share a few ideas about the language of allies.

There a about five different types of dialogue, but I've grouped them into two categories for ease: public and private. When I talk about disability I first consider whether my conversation is for general broadcast or personal interest. I can then more easily differentiate between what I feel the world needs to hear - disablism; or whether it is a private conversation in which I need to respect the privacy of lived experience and/or personal predicament. So for example, I'll talk about disabling barriers in training, however privately I'll talk with a known person or group about the experience of living with depression. These aren't hard and fast rules, or definitive categories. Equally, the boundaries are not clearly defined, but on the whole it's a rule of thumb that's as good as any.

For many the term 'disabled' has become positive and empowering, as it denotes the recognition of oppression and affiliation to a civil rights movement. Used as a verb - I am disabled by attitudes; he is disabled by systems, he faces disabling structures - it recognises disability as a social oppression - something external to the person. Significantly, it also acknowledges something that can be changed to further inclusion - through the inclusive practice of acknowledging and removing barriers.

Some people hold the view that 'Disability' is not a description of a personal characteristic. A disabled person is not a 'person with a disability' as the person does not own the disability in the way that you might be 'a person with brown hair'. Consequently, some people understand that the opposite of 'disabled' is not 'able-bodied' or 'abled', but 'non-disabled' or 'privileged'. So for these people the use the word 'disability' describes the social reaction to difference. Disability is not banned or bad, but 'impairment' is used more mindfully to talk about medical conditions, diagnosis or description of functioning where it is required - probably privately or with anonymity.

Understanding the critical difference between these two terms allows a responsibility to choose to talk separately and clearly about:

· a named individual => the person => bob

· impairment => their functioning => with difference

· disablism => society's barriers => oppression

Used in a sentence for example: Fred Brown (the person) is a man with cerebral palsy (the impairment). When the barriers and discrimination (the oppression: disablism) that impact on Fred have been removed from society, Fred will no longer be disabled, but he will still have an impairment, cerebral palsy, and be called Fred. (Author unknown)

Disablism, then, can be likened to racism, sexism, homophobia.... In the most simplistic way, one could say that the disabling effects of society imposed on disabled people may be in addition the problems that may be caused by their impairments. However, in the public arena, everyone can do something about tackling disablism, whether we have an impairment or not. Allies, to my mind, denotes those that acknowledge the movement, the hidden voice of disabled people throughout the years.

If change is to happen, it is essential that we understand disability as an instrument of social oppression. We need to acknowledge that such oppression occurs and that disabled people are subject to the very real effects of other peoples' attitudes and beliefs. Different cultures have different attitudes to the disabled people in their communities. Whether these attitudes are positive or negative, they will influence people's expectations of a disabled individual.
"Disability... the disadvantage or restriction of activity caused by contemporary social organisation which takes little or no account of people who have physical impairments and thus excludes them from the mainstream of social activities". (Union of the Physically Impaired Against Segregation, 1976)

Just as racism, sexism and classism all promote stereotypes, so disability is manifested in negative attitudes and false stereotypes that lead to prejudice. Unlike sexism or racism, however, you won't find disablism in the dictionary. Yet it describes an all-too-real issue - discriminatory, oppressive or abusive behaviour arising from the belief that disabled people are inferior to others. 'Institutional disablism' describes a whole organisation's disablist attitudes, practice and culture. (Miller, P., Gillinson, S. and Parker, S, (Demios, Scope & DAA 2004) Disablism: How to Tackle the Last Prejudice.)

We must be willing to challenge our own stereotypes and prejudices about disabled people. Just as we would challenge racist behaviour in an office situation, or when imagining the careers and life paths of women, we must not allow our own stereotypes to limit our expectation of their achievement. If we fail to challenge our own prejudices then we internalise them.

Disabled people, of course have heard and felt these negative attitudes and stereotypes throughout their lives, and so naturally tend to internalise them too. This directly affects the way they perceive themselves, and is likely to limit their expectations. We might not be talking about violence, exclusion or alienation, but for some of the lack of choice, the lack of encouragement to express free will, ideas, and dreams begins a vicious circle of dependence. In turn, this influences wider cultural phenomena such as the oppression, segregation and violence made acceptable by certain medical interventions such as the late abortion of disabled foetuses.

We must be aware of this negativity and be ready to contradict prejudiced ideas in the workplace and the wider community.

These ideas are explored further by Mercer et al (1999) who describe the different faces of oppression that disable adults in our society. It is not hard to see how these attitudes channel the minds of young disabled children.

A key to change is the presence of young disabled people within the workplace. Without them, it is highly unlikely than the thought and wisdom needed to effectively include can be developed. No training and research in the world is enough to achieve this. Only within meaningful workplace relationships will people learn how best to facilitate the inclusion of each individual. [ Mercer, G. Shakespeare, T. & Barnes, C. (1999) 'Exploring Disability: a sociological introduction']

We have already considered the negative and unhelpful language that is often used in the media to describe the lives and image of disabled people. In fact, there is so much confusion around the terminology of impairment and disability that sometimes we are too scared to talk about the issues at all. In order to tackle equality issues, we need to move forward from this state.

Unfortunately, too many non-disabled doctors, educationalists and social workers still insist on using politically correct - rather than appropriate - terminology. Political correctness simply confuses issues, advocating terms such as physically challenged, visually challenged etc. Such expressions detract from the real issue: who is being challenged here? Disabled people have no problem with their difference, but do feel challenged by other people's lack of tolerance and by the barriers that make it harder for them to participate.

'People with disabilities' is inappropriate too: although disabled people have impairments, they are disabled by outside forces.

Many disabled people have felt empowered by the ideas and language of the Disability Rights movement. This language, endorsed by disabled people, focuses on respect and self representation.

The nub of the issue does not concern 'good' or 'bad' words. Respectful language should be neither negative nor positive: it should be neutral.

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Impairment and disability: a world of difference

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The the disabled people's movement in the UK has used the term disabled for many years. It was chosen to underscore the idea that dis/ableism is a social problem. Being disabled is about environment and culture, not simply about personal difference or physical deficit.

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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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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
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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.