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Understanding and Acknowledging Disabilities from a Native Perspective

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Understanding and Acknowledging Disabilities from a Native Perspective

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Understanding and Acknowledging Disabilities from a Native Perspective

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July marks Disability Pride Month, a time to honor the efforts of advocates past and present, For the disability community, a time to call for greater visibility. lives with a disability, according to the World Health Organization. Despite this significant number, stigmas persist and many disabled individuals experience inaccessibility to equal opportunities in healthcare, education and employment, for example. This stigma is especially salient within the Fifteen percent of the global population desi community's "log kya kahenge" rhetoric. United Kingdom-based Sukhjeen Kaur, the founder of Chronically Brown , started the organization for precisely this reason. At the age of 20, she was diagnosed with Rheumatoid Arthritis. Her initial experience was isolating-both in her university life and also due to hostility and misunderstanding from many of her own family members. These negative experiences, coupled with the daily pain of her chronic illness, prompted her to reach out to fellow South Asians undergoing similar experiences, and she soon realized that she wasn't alone. Thus, Chronically Brown was born in 2020.

Tackling Cultural Stigmas

Sukhjeen mentions how society's creation of terms like "special needs" and "differently-abled" detracts from the term "disabled," which in itself is not a bad word. "If you were to ask the community, we're fine using 'disabled.' It's our word, we want to make it our own," Sukhjeen explains. She says changing it means refusing to listen to the community and imposing negativity that shouldn't be there in the first place.

Another fact that holds South Asians back from learning about and embracing disability is the cultural tendency to avoid conversations surrounding the topic. However, according to Sukhjeen, this only perpetuates isolation and upholds unrealistic expectations. "I've seen disabled South Asian women not being able to talk about their health or any aspect of access because it's viewed that they need to be the caregiver-cooking, cleaning. But if we were to talk about it and give access to needs, then that woman can get married and have a family if she chooses. She's able to do that and not feel excluded, working against the body rather than with it. It really all starts with a conversation."

Furthermore, the view of disability remains rigid. Though several disabilities are visible and require individuals to use mobility aids, many-inflammatory bowel disease, endometriosis, mental illnesses-are invisible . "Within the South Asian community, we tend to view disability as a physical impairment, that we're all wheelchair users," Sukhjeen says. "[But] disability is so broad and different for every person, even if you have the exact same condition or injury. And that's such a big stigma because we're excluding somebody from having an identity that can empower them instead of making them feel like they're lonely."

#DesiAbled Campaign

What became apparent to Sukhjeen in her advocacy efforts was a lack of representation for people of color, particularly brown folx, in disability spaces. She wanted to ensure that South Asians were getting the same opportunities as their white counterparts, specifically in regard to charities, organizations, the press, and pharmaceutical companies. By posting their images to social media with the #DesiAbled hashtag, disabled South Asians not only make themselves more visible to these entities but also share their experiences in a way that makes others feel less alone.

"It's starting to make a slight change," Sukhjeen says of the campaign's efforts, though they hope more people will hop on board. Through the #DesiAbled campaign , Chronically Brown brings the opportunity for both disabled and non-disabled South Asians, as well as anyone outside of the community, to get a holistic idea of disability. Sukhjeen wants people to "learn a bit more about what it's like on a day-to-day basis." Furthermore, a disabled South Asian "doesn't have to identify as just disabled and just a South Asian, it's so much more than that. It's part of them, but there is more than that going on. They live lives just like everyone else."

Ambassadors and Activism

"I noticed that even though I have so much knowledge on disability, I can only speak from a specific experience. I have a chronic pain condition. It's a physical condition, I don't use a wheelchair, but I do use mobility aids. And that's only very unique to me," Sukhjeen shares. To represent a diverse array of experiences within the South Asian disability community, she decided to get more advocates on board with Chronically Brown, known as ambassadors . "We have a few people that have different chronic pain conditions, or neurodivergent conditions now."

This opened up opportunities for Chronically Brown-for instance, more podcast requests. To expand Chronically Brown's ability to access a wider audience, ambassadors step in to help out with advocacy efforts, or to put the organization in touch with people they know. "The idea behind it was for [the ambassadors] to have a platform with Chronically Brown. And also for them to help out with the campaigns and projects that we're doing now."

Chronically Brown Workshops

Workshops are a prime means Chronically Brown engages in advocacy and aims to educate the public. They typically hold them with South Asian community groups, for instance, Sikh Elders .

"Usually, the issues are very generalized, because we have found that disability as a whole is a conversation that is nonexistent," Sukhjeen says. Chronically Brown outlines different disabilities and engages in "myth-busting," trying to gauge older generations' existing knowledge of disability and attempting to provide them with a clearer picture. "For example, somebody didn't realize that cancer can have long-term effects, even if you are in remission," she says. "They usually view [disabilities] as very female-specific conditions, and almost as normal," Sukhjeen adds. "We want to make sure that they know, firstly, that they're not. [Disabilities] are not something that you should just have to deal with. They are something that you can have access needs."

Though it took a few sessions to acknowledge a turning point, many attendees walk away being better informed about their ableist beliefs and refrain from minimizing their own conditions. "One older lady had avoided using a walking stick because she didn't feel like it was something that looked nice. After the workshop, she ended up wanting to use it more to help her physical health and reduce the amount of pain she [was] in." Another point Sukjheen brings up is the younger generations' hesitancy towards talking about disability than the older generations. "Younger generations think that the older generations are allowed to complain. [Younger generations] think, 'we're young, we're healthy, we're fine." But she hopes that the education and advocacy that Chronically Brown provides will encourage them to speak up for themselves and seek professional help when they need it.

Future Directions

Sukhjeen aims to expand Chronically Brown's visibility, beyond social media. She also hopes to create resources for people to learn about disabilities at any time and wants to make the information accessible in the majority of South Asian languages.

"If we want to make a change, we recognize it's got to be with the older generations, as well as the younger ones. And hopefully, we can tackle stigma on a wider scale, not just within the UK, but also in other Western countries."

Whether you live with a chronic illness/disability yourself, have a loved one who does, or wants to better educate yourself on how to be an ally to the community, follow along with Chronically Brown via Instagram . You can also visit their website for more information, and subscribe to their newsletter for the latest updates.

Feature image courtesy of Chronically Brown.

Brina Patel is a Sacramento-based freelance writer. Brina's work has been published or is forthcoming in LA Family Travel, LEVITATE ... Read more ›

I was a mere 14-year old on the fateful night of 22 April 1993. The night that witnessed black teenager Stephen Lawrence brutally murdered in a racially motivated attack as he waited for a bus. The night that cemented my fear, that the colour of my skin does matter. The same night that confirmed my indifference as a British Asian in the United Kingdom - were we really united? Fast forward to May 25 2020, the murder of African-American George Floyd by a white policeman was the turning point for British Asian author and my lovely friend, Shweta Aggarwal to finally break her silence and narrate her story of colourism, in her new book, " The Black Rose. "

Aggarwal's gripping memoir emits so many emotions; that of an awakening, a voice that has been suppressed for years, filled with anger, mistrust and guilt. But most importantly, "The Black Rose" successfully disrupts the narrative that consistently allows society to box someone as indifferent based on a visibility factor. For Shweta, this factor was the colour of her skin. The injustices she consistently endured via some family members and fellow South Asian peers throughout her life, was as a result of her skin tone failing to qualify as 'acceptable', or as she often quotes in her book, not ranking high enough on the 'fairometer.' Whether she was in India, Japan or London, the scale was never too far behind.

Within the first chapter, she recalls as a child in India, the distinct lack of subtlety displayed by certain family members through direct taunts of her duskier appearance in comparison to her parents. She realised that she wasn't in complete isolation from this prejudice, as her maternal aunt and uncle were also harshly nicknamed on the basis of their skin colour - Kaali (black) and Savla (wheatish). Aggarwal was left mortified by what many South Asians sadly still continue to casually exercise. Echoing similar incidents within my social proximity, it's infuriating witnessing the recipients of such remarks surrender to laughing at themselves too.

Except it isn't funny. Born into a culture where conversations on religion, caste and hierarchy in India are still so prominent, the comparison of Aggarwal's skin colour being as dark as that of the domestic help (often from poorer families), prematurely planted seeds in her mind that she simply didn't belong with her family, especially when she was sent to boarding school. Her lack of self-worth coupled with these taunts, gave her a whole new vocabulary for the letter B, that grew in parallel with the ongoing prejudice and anxiety. B for blackie, beggar's child, bedwetter! Not funny, but derogatory. Post her book launch that Brown Girl Magazine attended, she tells me,

I personally feel we are way behind when it comes to understanding the importance of mental health. Name-calling was normalised and if you objected, you were ridiculed further with remarks such as 'So sensitive! Can't you take a joke?' Body and colour shaming can lead to a feeling of inadequacy in the victim, which can further lead to depression and much worse mental illnesses.

During the 1984 Hindu Sikh riots in India, where over 3000 Sikhs lost their lives, Aggarwal recollects the frightening moment when she and her classmates fled into hiding to escape the violence during a school trip. As a means to save all the students from harm, the Sikh boys were forced to remove their turbans and long hair - their visible identities stripped to keep them alive. Yet, ironically, even in this horrifying situation, Aggarwal felt least at risk, attributing this self-assurance to her darker appearance.

The crux of her self-loathe was the love-hate relationship she formed with skin whitening creams. The birth of Fair and Lovely, India's most renown brand (now known as Glow and Lovely following a backlash) was notorious for selling the damaging message that fairer skin equated to a happier and fulfilling life. For it was fairer skin women that would qualify for marriage - clearly their only sole purpose!

Tactfully using famous fair-skinned Bollywood actresses in television ads and posters, their so-called perfection would scream out to vulnerable young girls. (Men were targeted much later on, but the importance seemed less). Akin to the wretched beach body posters plastered on every corner in January - because apparently bikinis only look good on a certain body type - the damaging message remains the same. Social acceptance comes at a cost, and that cost is to look a certain way.

It's an extension of the dated methods imposed on women from the womb, where mothers are lectured on drinking milk with saffron to ensure the baby is fair, traditional matrimonial sites asking women to specify skin colour, and women being told to stay out of the sun. These socially ingrained views are eventually developed into modern day methods in the form of cleverly marketed consumables. Aggarwal admits,

Most people only use the cream on their face just as I did. At that time, I didn't even think about the rest of the body. I felt that if the face becomes fairer, that will be enough for acceptance. My mum noticed the difference for sure and I was lighter by the time I met my husband, Amit. I must admit the addiction is a combination of three factors: the justification in your own head, the strong marketing message that ONLY fair is beautiful, and the 'compliments' from those around you.

I admired Shweta's honesty on admitting what essentially was a dangerous obsession that she remained faithful to throughout her teenage and adult life. A ritual that, whilst prompted gradual results in her appearance, was never going to eliminate the insecurities she felt within herself. Moments of joy with her husband and children on holidays abroad, would be broken up by the need to 'fix' any damage the sun may have inflicted i.e. reverse her tan. The booming tanning industry in U.K., her now home, and admiration of her 'sun-kissed' look by Brits initially surprised Aggarwal - as if her colour had now gained acceptance.

But who are we seeking acceptance from? A society that is still deep rooted in patriarchy forcing women even now to adhere to dated rites of passage that holds no relevance? Or a society that seeks to point out one's indifference because of how they look - their skin, their religious attire, their weight? Or a society that passes judgement on a woman's self-worth, and continues to abuse that same woman behind closed doors under the eyes of Goddess Kali? Aggarwarl goes on to explain,

The more damaging perceptions of colourism, are that 'fair is rich', 'fair is successful' and 'fair is better educated'. Essentially, 'fair is supreme' in every sense. And if that's the case, where does that leave dark-skinned people? In Ukraine, for example black and brown people were discriminated against and not given a fair chance to save their lives. Is it fair to be denied a basic human right - survival - based on your colour?

I personally was curious to know from my family what the definition of prejudice in the Hindi vocabulary is and how it is/was applied to in India. "Pakshappat" (taking sides) or " poorva dhaarna", were the closest pure Hindi definitions known to my cousin, yet rarely used. However, my dad stated that " hum bedh bhau nahin hai " was the common term used to state amongst family and friends when someone was not biased and believed in equality. Somehow, colourism never really came under that category. A sentiment echoed by some of my Chinese and black friends . Even in parts of China and Africa, the belief that darker skin is perceived as inferior, is accredited to stereotyping certain groups of people as manual labourers working under the sun, and therefore of a lower class or caste. Does Shweta believe we can change this attitude?

A couple of my aunts are still reluctant to help me with my mission. One even said 'it's pointless fighting it', while one said, 'everyone has the right to define beauty for themselves and being fairer is what beauty is for some.' The problem with this is that people then start to look down on people who aren't. Colourism, casteism and classism divide people, creating more unrest in society. If we continue to aspire to be fairer, we're still encouraging white skin privilege, and encouraging colonial values. The more we allow ourselves to succumb to these social constructs, the more enslaved we feel internally. Melanin is crucial for protecting our skin against the harmful radiation of the sun. Feel blessed that you have it and wear it with pride!

I wonder how we can dare to walk shoulder to shoulder with our black friends in the Black Lives Matter movement, if we refuse to face up to our own biases against colour? We seek equality in the U.K., but deny our deep-rooted prejudice, whilst a white privileged man lectures the world on the difference between racism and unconscious bias (yes Prince Harry, I'm looking at you!). "The Black Rose" has paved a way for many more voices to speak out against the damaging impact of colourism, and in my view, rightly belongs under the definition of prejudice in the collective South Asian vocabulary.

"The Black Rose" is available to purchase on Amazon.
Photo Courtesy: Shweta Aggarwal

Brown Girl Magazine's U.K. Editor Sejal Sehmi is an IT consultant by day, whose passion for writing stemmed from challenging ... Read more ›

I grew up in a household of strong Trinidadian women. I wanted to write about strong Trinidadian women, the roles they play, their histories and their backgrounds. - Sophie Jai

"Wild Fires" by Sophie Jai is a story about one Trinidadian family's journey through grief, identity and memory. Jai's debut novel takes readers on a journey of a past Trinidad and present-day Canada.

In conversation with Jai, we talk about Caribbean stories, the psychology of a house and what makes a family. The following answers have been abridged and edited for clarity and concision.

What inspired you to write "Wild Fires?"

I first started writing it for submission to a competition with the Borough Press . I wasn't sure what story I wanted to write because I felt obligated to write certain stories or write in a certain style. I pretty much got fed up and started questioning myself. When I put pen to paper and got serious, the story that came out was a story of grief not necessarily specific to my life. I knew I wanted it to be about a family going through grief for decades, and how grief can arrest and impact the family structure.

When you first started writing, which part of the story came out?

It was the very first chapter. The first three chapters of the book came naturally. What you read in the book is untouched from the first draft that I submitted. I knew it was about a family that was going through grief. I knew I wanted it to take place between Trinidad and Toronto because I was born and raised in Trinidad and lived in Toronto. I wanted that sort of cross-generational mixture of family in the book as well - to see how each generation dealt with grief.

Did you always want to be a writer?

I don't think I knew. It's just one of those things that you think is impossible, so there's no point dreaming about it. But when I was a young girl in Trinidad, I imagined myself carrying a leather briefcase and I don't know why, but I knew I was going somewhere important, and I had something important to do. I always loved writing, but the truth is people get in the way and they dissuade you. It's all around you - that the arts is not a viable career and if you pursue it, you have a 95% chance of failure. But after working 10 office jobs in three years, I'm like, 'I'm not happy,' so this is actually the failure. I knew I needed change.

How do you navigate the space of being told that art is not a viable career, especially in the Indo Caribbean community?

Those challenges were around me all the time. It wasn't even my family, but it even comes from friends and acquaintances. When you're young, being an artist is hard, and you're told there's no point in doing it. I listened to people who said that, and got office jobs and did what everyone else was doing because apparently, that was the way to be happy. Five years passed by and I realized I wasn't happy and I should have never listened to those people. I started writing. I started doing something that made me happy and treated it as a serious craft. I did not treat it as a hobby, but as something that was going to pave my path. I really worked in a tunneled vision. So I never told anybody what I was doing - I didn't want to be dissuaded. I had to be my own champion. I know that doesn't sound healthy, but back in 2012, I didn't know about community.

Cassandra, the main character is a writer, like yourself. How much of Cassandra's story is your story?

My family is very supportive of my writing and it took some time for them to get there. Like many families, they kind of saw it as a hobby. Once they saw that I got published, they took it more seriously. Now, they are supportive of my writing and I think in the book, Cassandra's family is not that supportive. They just weren't interested in her writing, which is why she didn't talk about it. It is a little bit reflective of my own experience.

Is the rest of the book based on a true story?

It wasn't based on a true story. That is something I get asked often - a lot of people say 'she's Trinidad and you're Trinidadian.' The places I wrote about are from my memory, but the plot itself is fiction. I wanted to challenge myself to write something truly fictional. I grew up in a household of strong Trinidadian women. I wanted to write about strong Trinidadian women, the roles they play, their histories and their backgrounds. The characters aren't necessarily based on anyone particular in my life. Overall, it was a joy to imagine and write it because each one of these characters are very different from the other.

The novel has nine major female characters and at most three major male characters. Why did you want to tell a female-driven story?

I grew up in a family of predominantly women, and most of my Caribbean friends also grew up in families of predominantly women. They really are, in my experience, our caretakers. For me, my family and my friends, our mothers are our worlds - we love and admire them. Family is their priority; raising their children is their priority. I wanted to write about Trinidadian women because I wanted to tell each of their stories. I want more Indo Caribbean and Caribbean women in fiction. I think anything that I write will always be about Caribbean women. I want to contribute to that field of literature. I have such enormous respect for them; all the sacrifices that they've gone through to bring their kids to new countries - some of them single moms. There's nothing else I really want to write about, to be honest.

One of the other things I noticed was keen attention to the setting. How many of these precise details came from your own life, if any of them?

For Trinidad, a lot of it is based on my memory of the island and my home there. But I did have to turn to my family for specific details that I thought I may have imagined. Because I grew up mostly in Toronto. I was insecure about writing about Trinidad, so I went back to my mom and my family, who lived there for over 40 years. In terms of the house in Toronto, some of that is from my experience and some from imagination. I've written and talked about this book before, "The Poetics of Space" by Gaston Bachelard, which examines the psychology of houses. I tried to construct a house that would accommodate the psychology of the characters. If the house seems very detailed, it's because I made it so, to accommodate certain secrets and people's personalities.

Why explore the psychology of a house?

It's not an original thought, but I think the way space is organized around us, or the way we organize ourselves in a space dictates physical behavior. If you're in a wide open space and you don't know anyone, that can seem intimidating. If you're in a closed space, that can also seem intimidating. I tried to organize the space to give each character privacy from the other, but then once they were in a common room, it really changed the dynamics of their interactions.

What makes a family?

I think people who have been through challenges with you for years make a family. That's not even a blood thing - I have friends that are like family because we've been through things together over decades. It's people you've experienced highs and lows with, but managed to stick with throughout the years. But 'family' can also be people who you haven't talked to for years, who you've had a fragmented relationship with. For those sorts of relationships, it can be an unhealthy loyalty or a wondering of what could have been.

The book doesn't have a happily-ever-after ending. Why?

Not ending the story in a neat little package was very important to me. I think there's a certain expectation in storytelling by readers that a story needs a conclusion. And, to me, this is not what actually happens in the real world. The reasons people read a book are different - some people are reading for escapism, others are to better understand cultures and other people - so it depends on the reader and what they're looking for. In literary fiction, readers are more open to an inconclusive ending because literary fiction can take things to a darker, more serious place than other genres. If I wrapped up the story with a nice little bow, it would be untrue to what this family has gone through. I wanted to show how unsolved issues can pan out. I didn't want to take the story from a sad beginning to a happy ending. Not all stories end happily.

What do you want readers to take away from "Wild Fires?"

I set out to write a story that had a universal theme. I wanted to feature a somewhat normal story with Caribbean characters. It wasn't centered around race or indentureship because a lot of the Indo Caribbean literature that I've read has been - and rightly so. That's where I learned about our history and our stories. But that was not a story that I wanted to tell first because it was not the story that was closest to my heart. When I started writing, I realized the story was really about grief. I wanted to show Caribbean women and Indo Trinidadian women, in a universal light. We are a result of these histories yet go through normal things like grief, secrets and family dysfunction.

Following the publication of "Wild Fires," Jai is pursuing her Master's at Oxford University as a Kellogg's Scholar. While attending school, she's looking to write a short story about Caribbean joy to contrast the dark themes of her debut novel and portray Caribbean women in unrepresented ways.

"Wild Fires" is available in Canada and the UK and will be available in the U.S. in Spring 2023.
Featured Image Courtesy: Sophie Jai

Usha Sookai is an undergraduate student at New York University, studying Journalism and Social and Cultural Analysis. With a passion ... Read more ›

In her new book "Dear Durga," author and life coach Shanita "Shani" Liu takes a different approach to self-help. Liu guides readers by providing a courageous framework. She writes to the Hindu goddess Durga Ma, who is a symbol of courage to Liu. Durga Ma represents power and protection in Hinduism.

Liu ties together the personal. She shares her experiences in witnessing fear-based patterns from her own Guyanese family and culture and noticing them in herself as a mother while proving coping strategies as a life coach. In this candid conversation, Liu explores the journeys of motherhood, writing, overcoming fear and leading future generations by example.

Where did the idea for this book come from?

It came from a diary entry I wrote in 2018 or 2019. I wrote that I was going to write a book called "Dear Durga." I created a folder on my computer and it said "Dear Durga Book" and it was almost like I was setting the intention. I didn't know what it was going to be about, but I did know that Durga and writing to her was an important part of my journey. And so I just had this intuitive feeling that I was going to be able to share this story one day.

How did you decide what the book would be about?

In 2021, we were going through the pandemic, I just had my third child, and Durga was very much like, 'okay, now you're going to go write your book.' And I was like, 'Wait, what? I'm sorry. I'm, like, trying to navigate motherhood again and my business and everything else that was going on.' And she was like, 'no, you're going to participate in this writer's workshop. You're going to learn how to write a book proposal. You're going to enter it into this contest. You're going to win the contest, and you're going to write a book.' And I thought she was nuts. And all of my fears started coming up - who am I to do this, I can't do this, I'm not enough, what am I writing about?

I had to muster up the courage to write this book. And so Durga was a catalyst for me to call on my courage and say, 'it's time.' This moment made me realize what I've been doing professionally for the last seven years is walking folks through my framework to help them activate their courage. So even though I was terrified, I realized this book can take the personal and the professional pieces of this puzzle and really put it all in one place.

When you say that Durga was your driving force for action, do you mean spiritually and religiously, or something else?

For everything, yes-emotionally, spiritually. In 2015, when I was falling apart and embarking on these major life changes in my life, she came through. It was the catalyst for me to say, "I have to start breaking myself out of these fear-based mindsets and really start entering these new phases of my life with courage and disrupting old patterns."

Describe the writing process for this book. How did you find that courage to move past your fears?

Definitely writing to Durga. Knowing that the book was going to be about this journey of me connecting with my courage, I had to accept the challenge. I'm a writer by training. I've been writing my whole life. I was an English major, so I knew I could write, but I had to sit down and excavate six years of my life. I had to go into my journals from 2015 up until when I started writing the book at the end of 2021.

It was wild to re-experience myself going through these various obstacles, these discouragements, these discomforts and then find the strength through this courageous energy I had within me, to take these small steps and overcome each obstacle. The excavation of my own life was an interesting part of the process for me to get clear on the themes based on what I remembered.

The writing process was very spiritually and emotionally transformative because I've been doing all this work with my own courage that I sort of had to channel it with my own creativity to write and to marry what I had been doing professionally and what I had been going through personally. So, once I formed the book proposal, the blueprint for what I was writing, and submitted it to the Hay House contest, I then learned I won the runner up prize, I was able to write the manuscript pretty quickly. At that point, I was like, 'okay, I know what I'm writing about now. I know I have the courage to do it.' Durga was right, after all.

Walk us through the four steps for somebody who is just hearing about this and is interested in your way of approaching courage.

I have a Courage Kit framework, and I've had to walk my talk through it, but I've used it with hundreds of clients. It's a four-phase process to support you with activating your courage and keeping it alive. The first phase is activating your courage and calling it in, identifying your courage metaphor, how to access that energy and how to commune with it and build a relationship with it. The second phase is about aligning with your needs because, as mothers and women, we don't ask ourselves what we need due to this societal expectation and cultural conditioning. That's an important part of emerging victorious. Victory is important because it means to attain fulfillment. Being victorious means having the courage to honor yourself so that you can be victorious, whatever that is like for you. The third phase is alleviating stressors so you can feel your best. Then the fourth phase is taking action so you can start making baby steps towards your goals.

How was this journey impacted by being Indo Caribbean? What role did your culture play in this?

The role that my culture plays is huge. In the book, I talk about the legacies of sacrifice that I come from because of indentureship. I'm three generations removed from that history of colonizers exploiting indentured laborers. When you come from these legacies of sacrifice, fear-based mindsets and behaviors accompany it. When I was acting from a place of martyrdom and sacrificing my own needs, I realized I learned that from the women who came before me, who learned it from the women before them.

When you zoom out you realize this has happened across cultures. Why are women in our culture asked not to use our voices? Why are people telling us to shut up, play small and don't cause trouble? Our voices have been collectively suppressed, and over the last few decades, we've been liberating ourselves. We're going to honor all parts of ourselves and express ourselves as we need to, and we need courage to do that.

Why dedicate the book to your younger self?

I had to dedicate this book to my Little Shanny because her voice was suppressed, and due to cultural and societal expectations, she wasn't allowed to be her fullest self. She's very lively and creative. In the book, she is writing and we make rap songs and other things to call on our creativity. This book is an honoring. As I was honoring all parts of myself and healing my own emotional wounds, I was liberating her at the same time.

How would you describe your relationship with Durga Ma? How can others who are not Hindu achieve that sort of relationship with their metaphoric courage figure?

Regarding Durga and myself, I don't say, 'I got this courage metaphor, now help me.' You have to build a relationship with it. In the last eight years, I've been able to build a solid relationship with her where my courage is almost automatic. If I feel or think about fear, my automatic courage alert starts going off. The stronger connection I build to her, the stronger our relationship becomes, and the more self aware I become about making courageous choices.

But, in the introduction of the book, I clarify that folks can use the Durga archetype or work with Durga whether they are Hindu or not. It doesn't matter what walk of life you come from because she embodies victory over evil, maternal protection and an unapologetic courage that we need for fulfillment. So I encourage folks to connect with her because people who are meant to resonate with it will resonate with it and if Durga doesn't resonate with you, you understand you have this courageous wisdom inside you. If telling my story about the way it looks for Durga and I, inspires somebody to ponder a relationship like that, that's great! In the end, I just want folks to walk away feeling comforted and equipped with tools to be their most courageous selves.

How do you take this idea, this archetype, and apply it to yourself or anybody?

We're human beings and I think sometimes we just need something visual or tangible to hold on to. Sometimes I need an idea or person to help ground what's coming up for me, so the metaphor is really helpful because I can visualize and interact with it.

The metaphor offers information because when you're scared and fear is clouding your judgment, it's easy to default to doubt. Your courage metaphor offers information, encouragement or directions - targeted guidance. As long as you connect, communicate with and build a relationship with it, it will help you. That's why I use "Dear Durga," channeled writing, as a common thread throughout the book, it's one modality that works. If this modality doesn't work for you, then try interacting with it differently. But at the end of the day, regardless what modality you find, you can leverage that metaphor's information to inform your next step.

How did motherhood and becoming a mother play a role in writing this book and also your career as a life coach?

I started life coaching when I became a mother. I was pregnant while I was in my Life Coaching Certification Program, and Durga Ma showed up just a few months before I found out I was pregnant. I think she knew I was going into the next phase of my life, and I couldn't continue on my own anymore. So motherhood was a huge act of courage for me. I left a toxic job so I could embark on motherhood and begin making professional choices that would support me once I became a mom.

The beautiful thing about motherhood is that you become a different person - you change. Your ability to care, give, create and grow changes. Motherhood informed the work that I did with other women in their mind, body, spirit wellness and it forced me to focus on my own wellness. Also, Durga Ma just happens to be this maternal archetype, so maternal protection and nurturing felt important to my process as I was healing wounds. This is a powerful energy that can support other moms because we need support. We're caring for little human beings and, as it is, most moms are under-resourced. Courage is a resource that doesn't cost any money, that can help with life's challenges.

Did you have to endure little battles with people around you to gain support for the kind of work that you do?

I don't think anyone around me discouraged me. The battle was within myself and having the courage to say, 'I'm this life coach who's going to focus on courage.' I had to get over my own impostor syndrome, self doubt and fears that were weighing me down about coaching with this mindset among many other coaches. When I started, I was focusing so much on self care, but then I realized it's so hard for women to self care because we have a fear of doing it. Everything goes back to fear. That's why I realized the root of all of this is coming back to our courage.

As an Indo Caribbean mother, there can be a lot of expectations. Did the courage framework also help with that?

Absolutely. Most moms are givers, especially those of Indo Caribbean heritage. We saw our moms constantly sacrificing everything so we can have high-quality lives. But this trajectory of motherhood and bringing my courage in through my own framework forced me to ask for help, set boundaries and put my needs first. Obviously we put our children first, we're always protecting them. But I began to honor myself. To realize I can honor myself and my needs while managing motherhood felt really important. But that doesn't happen overnight. It takes time to do that because we're breaking out of old patterns from our family's example. This is why, in 'Dear Durga' I tell a lot of stories about my grandmother, because she was a major influence in what I thought motherhood should look like.

Can this in turn create a healthier experience for the child?

Absolutely. You're a demonstration to your children. Your children do not do what you say, they do what you do. I have daughters and a son, and I don't want my daughters growing up thinking that when they get married or have kids and start a family, they have to clean the house all the time and never experience joy. I want them to see that Mommy can experience joy and fun and she can work, and she can do these things. It may not look perfect, but they can see that I can do all of these things without it costing my mental health and sanity.

Do you have a favorite story that you use in this book for reference?

It's not my favorite, but the story about my grandmother's death and the shock that my family and I felt stands out the most. She was the matriarch and anchor to our maternal line. So, when she passed away, it created chaos. As a little girl, it wasn't until she passed away that I questioned: 'Who was she? What was her life like?' It allowed me to see what my grandmother was like outside of being a grandmother. When the funeral happened, I heard stories about how she sacrificed, whether it was for her education or her family. It gave me perspective on everything that went into my family coming to the U.S. But it also made me think, now that I have the privilege and the opportunity to change things, am I going to take advantage of that?

Liu champions personal growth and overcoming fear, emboldening us to find our courage, be vocal about our needs and refute the age-old myth that Indo Caribbean women must struggle to be successful. "Dear Durga A Mom's Guide to Activate Courage and Emerge Victorious" is now available for purchase.

Usha Sookai is an undergraduate student at New York University, studying Journalism and Social and Cultural Analysis. With a passion ... Read more ›

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Chronically Brown: Dismantling Chronic Illness and Disability Stigma in South Asian Communities

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July marks Disability Pride Month, a time to honor the efforts of advocates past and present, For the disability community, a time to call for greater visibility.

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Remaking a world that wasn't built for us

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Remaking a world that wasn't built for us

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South Asian American Digital Archive (SAADA)

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I was the shining star of the predominantly Hindu, Indian American community in which I grew up in Charlotte, North Carolina. I checked every box. I was an obedient and respectful Duke Medical School-student with a handsome, desi, future-doctor boyfriend by my side. Aunties and uncles beamed at the sight of me. They asked me to talk to their kids, hoping some of my glow would rub off on them. They pestered my parents, "What did you do right?"

Then, at age twenty-three, during my second year of medical school, I had a spontaneous stroke that left me with locked-in syndrome. I was paralyzed bilaterally from head to toe and unable to speak, but I was cognitively intact. I lost my career, my love, and my secure future-everything the aunties and uncles of my community once glorified me for and everything I had learned to glorify in myself. All that was left was a wheelchair and shame.

Today, there are approximately 1.4 million Asian Americans with disabilities in the United States. ¹ Some of our disabilities are congenital and some are acquired; they may be physical, sensory, cognitive or another type of disability. But there's one thing we have in common. Our perceptions of disability unfold in relation to our respective cultural norms. Ideas of beauty, normalcy, and success emerge through a complicated convergence of our family backgrounds and how we grew up, and this profoundly influences how we see ourselves and our disability. Even though there is not a single or homogenous "South Asian American community" or even an "Indian American community," for that matter, the intersection of disability and culture has been central to my experience.

Viewing a person with a disability as inferior is referred to as ableism. When people with disabilities project that negative belief onto themselves, it's referred to as internalized ableism. Outdated beliefs about the competency of people with disabilities, the cause of their disability, and their value in society perpetuate ableism. Some of these beliefs are so entrenched, they are thwarting progress in the disability community because they are reinforcing internalized ableism.

In every community, there's a battle between old beliefs and new, reductive stereotypes and progressive visions, that needs to be resolved as we work toward disability inclusion and acceptance. This essay considers how South Asian American activists with disabilities and their allies are pushing back against harmful, ableist beliefs. They, like me, are using their voices to try and break through and combat longstanding stigmas against disability.

"We Are Not Less Than"

"Hi Harshada. I'm Raj uncle, Amit's dad. Do you remember me?" asked Raj uncle as he bent down to my eye level.

My smile vanished like a forgotten dream. Everything inside me clenched up. I searched for the words, but I couldn't find my voice. My throat felt raw. Just say yes! Or nod! Do something!

But I was stunned and a simple 'yes' didn't feel like enough. My gaze fell to the floor as I waited for him to move on to a conversation with someone else. I felt like the tiniest person in the world.

I've known Raj uncle for twenty-five years, but after my stroke he introduces himself to me every time we meet. He's not the only one. People in my community have treated me like a child on countless occasions, or, like Raj uncle, severely misunderstood what my disability means. They see that my body isn't what they consider to be 'normal' and correlate it with assumptions about my intellect and memory. Whenever I'm at a community event or the temple, for example, strangers will come up to me and hug me, kiss me, or whisper random "God bless you's" in my ear. Their actions disrupt the fun I'm having with my friends or family and remind me that people don't see me as normal.

What I'm describing here as my experience is in fact widely shared. In the semi-autobiographical novel Family Life, Akhil Sharma tells the story of the Mishra family's struggle to create a life in Queens, New York, in the late 1970s. Sharma describes how local aunties or uncles who visit the Mishra's house first touch the feet of the nonverbal, teenage son, Birju who has sustained a severe brain injury from a diving accident, in order to acquire his blessings. ² The actions of the local aunties or uncles may be well-intentioned, but they conspicuously label Birju as an 'other,' as if a wheelchair or scar doesn't do that enough already.

The profound misunderstanding and overwhelming pity over my disability, and disabilities more generally, are jarring, annoying, and dehumanizing. There's a palpable dismissiveness in such treatment; it's as if I'm now worthless and not even worth knowing, or that my significance starts and ends with my disability. This pity-soaked dynamic is othering and creates a hierarchy. Regardless of intentions, it leads to patronizing and isolating treatment of people with disabilities.

I am not alone in this. Cara Yar Khan, the Atlanta-based disability advocate, argues, "Our community still prescribes to the charity model or the medical model of disability and so it is this idea that because now I have a disability, my life will not be as fulfilling or as happy. Or, hope is only possible if there is a potential treatment or cure for my condition." Her statement underlines that people with disabilities are not believed to have the same potential as able-bodied people in South Asian communities. Jigna Desai, Minneapolis-based professor of Critical Disability Studies, has come to a similar conclusion in her research, noting, "This [ableist] perspective is often based on assumptions that disabled people are less capable, less valuable, less competent, etc."

Much of Khan's analysis also comes from her life experience. Khan's parents were very loving and supportive after she was diagnosed with a degenerative muscle-wasting disease at 30, but members of her extended family expected her to lower her future goals as a result of her diagnosis. In a conversation we had, Khan shared: "I was trying to tell people I'm still the same person, I have the same hopes and dreams, I have the same determination and grit, I have the same desire to fall in love one day and have a husband and maybe have children, but the fact that someone else now thought I was no longer entitled to that or I wouldn't be able to find it, that for sure was hard."

Why is it that the default perspective for some people is to see a person with a disability and automatically think she's somehow 'less than'? This was even my own perspective until a friend said to me, "So what? You're in a chair. You're still the same person. Still smart and beautiful." My mind was blown.

Khan came to a similar conclusion herself: "I don't need to walk again to be a powerful advocate for my community. I don't need to be able to raise my arms in the air to be a loving and doting daughter, you know? I don't need to be able to shake my *ss on a dance floor to be a great friend, you know? I can still be all of those things with the impairments that my condition presents."

People like Raj uncle and countless others haven't taken the time to understand different disabilities or maybe just haven't been exposed to many people with disabilities. Virali Modi, a disability rights activist based in Mumbai, India, told me that when she is outside her home in her wheelchair, individuals will congratulate her for going out. Their statements indicate just how little exposure they have to disabled persons and their experiences. Modi believes that disability visibility is key to changing people's attitudes towards disability. She and other disability advocates are raising their voices on social media and have become popular influencers in hopes of increasing disability visibility. Modi herself has led successful campaigns to get portable ramps installed at train stations and restaurants in Mumbai to increase accessibility-a huge barrier for the disabled population. ³ Modi has also dabbled in modeling and explored online dating; she's pushing for disability inclusion in all parts of her life and the world in which we live.

Khan agrees: "Exclusion is the result of invisibility." She says that for any community to change, we all need to see more people with disabilities out in public and at community events. Disabled South Asian Americans need to go out for Diwali or for Eid or even just to the grocery store to increase disability visibility-and they need the support, resources, and access in order to be able to do so comfortably and confidently.

"We will not stay silent"

"What's in here?" said an unfamiliar boy from just outside my room.

Every muscle in my body tightened. I could hear several boys whispering to each other. I guessed they were about 8 or 9 years old.

"I peeked, I think it's her," said another.

It was the first time my parents had invited people over since my stroke. It was just two or three families for a brief puja, but I begged my parents to let me stay in my room and watch TV. I didn't want to see anyone. I didn't want anyone to see me. As I sat in my power wheelchair staring at the television, I wished my makeshift downstairs 'bedroom' had a door instead of a curtain.

"I dare you to open the curtain and look at her," the first boy said.

"No way, you do it." They all giggled.

As a child, I learned that health problems were supposed to remain private and within the family. It was considered "the white way" to speak openly about anything that could be fodder for gossip in the community. ⁴ Flaws and problems were meant to stay hidden. But how was I supposed to hide a wheelchair?

Many of us growing up in Indian American communities have learned to hide things we feel ashamed of, things that don't fit the norm. In my case, I couldn't hide my wheelchair, so I just tried to hide myself. It's still an emotional roller coaster for me when I attend community events, even though it's been thirteen years since my stroke.

Priya Ray, an Asheville-based artist, musician and founder of DIYabled, had a similar upbringing. "Everyone's hiding this from this person, and hiding that...But that's how it was always growing up. [My mom would tell me,] 'Pretend like it's not happening. Pretend like you don't have a problem. Pretend like you're not disabled. Pretend like I don't have arthritis," says Ray.

In fact, research has shown that some Asian American parents of children with disabilities don't always feel comfortable taking their children out in public either. Another study suggests that in some families, the existence of one disabled child is thought to negatively impact the marriage prospects of the siblings, so the disabled child or disability itself is hidden. The disability is seen as genetic or contagious or, sometimes, a suitor's family just doesn't want their own to be caregivers all their life. In some cases, the disability or illness in question isn't acknowledged or accepted, leading families to avoid treatment. ⁵

In my experience, we flaunt our successes and gloss over our vulnerabilities. I don't know if it's because our parents want us equipped with the most attractive biodata or if the question "log kya kehenge?" ("what will people say?") has us brainwashed, but the obsession with keeping up appearances prevents many of us from acknowledging or discussing real issues. Khan says, "[If] we don't fit that ideal, it's frowned upon to 'put yourself out there', right? To let people in to see the truth. To some extent, we want to keep this façade of perfection." If a person feels depressed, he feels ashamed, so he doesn't talk about it. But the shame exists in the first place because no one talks about depression. It's a self-perpetuating shame cycle, and it just adds to the stigma.

I used to say I was sick, instead of disabled. Khan told people she had a limp, instead of a muscle-wasting disease. The family of a friend with cancer referred to it as "a little thing on her chest." In Family Life, Birju's mother insists on implying her son is in a temporary coma instead of acknowledging his severe brain injury. This erasure of a person's identity can lead to an inordinate amount of shame and isolation.

Afshin Bhimani, a Mental Health Case Manager from Sacramento, told me, "Sometimes I find myself hiding my disability even from myself, like my brain tries to trick myself into believing that I'm a typical person. But that's my internalized ableism. The stigma is so strong. My family is not even fully okay with me sharing about my life as much as I do." In 2021, Bhimani started the website "Desi and Diseased" to give people a space to talk about what it's like to be chronically ill and South Asian American. ⁶ Despite her family's misgivings, she wants to be the one to tell her own story.

After my stroke, I felt the same way. I didn't want whispers and gossip to shape my story, so I decided to give up my shame and sit in plain sight, for all the world to see. Against everything I had learned about vulnerability and privacy, I started a blog and began freelancing for a wide range of publications. ⁷ I was an open book. I described in detail every experience I had in the hospital, as well as every emotion and every weakness. It was raw, honest, and authentic.

Khan refuses to stay silent as well. "No society in the world when you talk about beauty or perfection or the ideal would show someone with a disability, which is a little crazy," she says. As a result, disability has traditionally never been something people talk about in an honest way. To change this, Khan travels the world and gives candid speeches about her disability; she even broaches bold topics like relationships and disability. She says she's happy to be "a renegade and a rebel" and shaking up the minds of people in our community by "putting herself out there."

"Disability is not 'karma'"

"When will I get better?" I spelled out with my eyes on my alphabet board.

No one said a word. In a small voice, one of the doctors eventually said, "We don't know."

I started sobbing. I hated this answer. But it was better than hearing "never," which is what all the literature at the time said. Most literature said I would stay in this conscious but fully paralyzed and mute state until an infection got the best of me.

I looked up at my parents from my hospital bed, tears obscuring my view. They both smiled back at me and said unflinchingly, "Don't worry, you'll be fine. You'll get better, just have faith."

I don't know if I ever managed to have faith-God and I haven't been on speaking terms since my stroke-but they were right, I did get better. Not at all a full recovery, but my body broke out of its locked-in state.

Religion and spirituality have a significant presence in many cultures, including the predominantly Hindu, Indian American community in which I grew up. Studies show that although families in our community, broadly defined, accept medical explanations for their family member's disability, they also hold onto what some might call "traditional beliefs."

Faith can be a beautiful thing when it gives people strength to get through difficult times. Like in my story, faith can give people hope when there isn't a shred to be found anywhere else. That little, defiant hope might have saved many of us from falling into a pit of inaction and depression. The family of a disabled child is sometimes able to accept the disability by seeing it as "God's will" or a "blessing from God." Some believe that "God will grant me the strength to handle this."

But faith can also contribute to heartbreaking self-blame. What if I hadn't gotten better? That little hope would not only go from looking brilliant to looking delusional, but it also would make me feel like I was responsible for my own ill fate, as if "I didn't have enough faith." As a student of science, I know that this can't be farther from the truth, but not "recovering" or transcending one's disability or ill health can feel like a personal failure: "I didn't believe enough." The guilt this puts on a person is debilitating and unfair.

The most harmful part of faith for many Indian Americans with disabilities, though, comes from karma, which is both a Hindu-derived concept and one that has been secularized into a general principle of cause-and-effect. Karma "represents the idea of universal justice, the belief that in the end, good will be rewarded and wrongdoing punished. Karma is an impersonal force operating to meet out consequences of actions." ⁸ When it comes to disability, some Indians, particularly Hindus, believe disability is a result of our karma, or a "punishment for past sins." Thus, people hold the disabled person, or the mother of a disabled child, responsible for the disability. This is another reason why people with disabilities have so often been shunned and excluded from society. It would be one thing if outsiders just saw a person with a disability and believed it was a sign of that person's moral failure. But this belief has become so ingrained that even some people with disabilities believe at one point or another that it's their own fault.

Nicolas Uppal, a political activist based in Atlanta, was involved in a motorcycle accident in Beverly Hills that left him with a spinal cord injury and brain injury when he was 25. He says, "I've castigated myself for my injury being as a result of karma." There's nothing he could have done, in this life or any other, to warrant such an injury. He's not alone. I think many people with a disability have thought at one time or another about what they might have done to "deserve" their disability.

Desai speculates that people are just trying to "make sense of atypicalities and provide a sense of causality" by blaming themselves, or searching for behavioral, moral, or karmic causes for the injury, illness, or disability. She says, "It seems to me that this creates some sense of agency that something can be done to avoid or ameliorate the situation." Moreover, people need a reason to explain why something bad happened to someone else, so that they can feel secure that it won't happen to them. Blaming a person with a disability for her disability is damaging and pernicious, yet widespread. Trying to undo that "bad karma" to ameliorate the situation can just lead to more false hope and self-blame.

Rhi, who is based in the UK, says she was told for years that karma caused her chronic illness. In a September 2021 Instagram post she writes, "I truly believed that I had done something so terrible, in this life or a past life, to deserve what was happening to me. I believed I was an awful person, that I was evil and tainted." With time and therapy, she has realized she didn't do anything to deserve her illness, and now she wants to help prevent others from feeling that way.

She ends her post with a message in all capital letters: "THIS IS NOT KARMA. THIS IS NOT A PUNISHMENT. YOU DID NOTHING TO DESERVE THIS!"

"We do not need to be fixed"

"Harsh, you know what?!" my mom said excitedly. "They held a puja for you at the temple."

I nodded, feeling a little flutter in my stomach.

"And last week, they dedicated the katha to you. Everyone loves you and is praying for you to improve."

The flutter in my stomach continued but it turned into a knot. I wanted to get better and needed all the good wishes I could get. I should appreciate this, shouldn't I?

I nodded again, slowly this time. Imagining all these people feeling bad for me-I felt embarrassed.

Many of us will see a person with a disability and think, "That person needs a cure." It's a belief that is the basis of medicine. When I was in medical school, if a patient came in with a fever, our job was to find the right antibiotic to bring the temperature back down to normal. Simple. Sensible. Return abnormality back to normal. Cure the illness. Fix what's broken. It's a belief that I and many other newly disabled people have believed as well.

Before my stroke, I was the ideal young achiever. Like so many other Asian Americans raised in a society that views us as "model minorities," I had learned to value myself in terms of my quantifiable achievements. After my stroke, I didn't know who I was.

I was determined to fix what was broken and to erase every trace of my stroke and disability. The original Harshada was dead and gone, but I didn't know that yet. I thought that if I worked hard enough, I could bring her back to life. I was going to fight, defy the odds and succeed, because that's what I was taught to do. As a child I observed the celebration of spelling bee champions, valedictorians, and tech geniuses. I expected this form of success of myself and everyone around me expected it of me, too.

This pressure to get better is often internal, or sometimes it comes from family. Priya Ray says, "I try to ignore that kind of pressure, but in reality it's so ingrained in our upbringing that it's hard to ignore it and we put pressure on ourselves, too. Sometimes even more than the people in our lives." In our culture, accepting a disability is sometimes seen as admitting failure. ⁹ Thus, many Indian Americans, and South Asian Americans more generally, refuse to fully accept their disability or prognosis. It's common for families to see a disability as temporary and something that will eventually be fixed. Research shows that parents constantly trying to find solutions to their child's health problems can actually have adverse effects on the child's progress. Children can feel the disappointment and frustration inherent in that "emotional over-involvement" and the resulting pressure can have psychosomatic effects. ¹⁰

Here's an example of this kind of "solutionism." Often, walking is linked to "normalcy" and social inclusion, so it is a common benchmark of success. Parents of children with disabilities try to get their child as much rehabilitation as possible because it's presumed that more therapy will mean success, even if the likelihood of walking is quite low. ¹¹ In addition to regular rehabilitation, Indian American families often spend time and money pursuing alternative treatments such as Ayurvedic medicine, naturopathy, homeopathy, healers, prayer and other traditional avenues with the hope of curing the disability in question. ¹²

I used to hate it when my physical therapist would spend our session working on propelling my wheelchair. I didn't want to accept my disability, and I didn't even want to accommodate it. I just wanted to fix it. In Sarika D. Mehta's collection of stories documenting the experiences of the deaf South Asian American community in Washington, DC, Zara Husain shares that her parents refused to learn sign language and encouraged her to get a cochlear implant. Her parents weren't willing to accommodate her disability; they just wanted it to go away; they just wanted her to be "normal." ¹³

Such pressure can be external, too, and even come from strangers. Vyoma Raman, an undergraduate at UC Berkeley with Spinal Muscular Atrophy, recalls a time when she was approached by an elderly man at a community function, and he advised her to pray at a certain temple. Every Indian American with a visible disability has experienced some version of this encounter. Well-intentioned strangers offer their opinions on how to get better, even when they don't know the situation. Raman adds, "I've been told about the benefits of Ayurvedic medicine several times, with a poorly disguised intent of steering me to fix my disability (which no herbs can prevent)."

It can come across as cavalier as well. In Family Life, after Birju's accident, numerous strangers from the Indian American community visit and claim that they can make Birju normal. Ajay, Birju's younger brother, says, "I did not like these 'miracle workers.' It seemed to me that they wanted to try their so-called cures on Birju because doing so would make them feel that they were at the center of important things."

South Asian Americans with disabilities are pushing back and proving that they don't need a "cure." They, we, need a new world. Khan says, "People with disabilities are some of the most innovative and resilient because we live in a world that wasn't built for us." Yes, she notes, some may be focused on finding a cure for a particular situation, and there's a place for that. But people need to know that there's an alternate way to live your life, and that without that cure, one's life can still be as fabulous. She says we need to stop thinking that "our value, our happiness is intrinsically connected to a treatment or cure."

I'm somewhere in the middle of the two paths. I'm still trying to get better and stay healthy, but I know my happiness isn't contingent on getting better. My stroke and disability are beautiful parts of my identity, and I can find my self-worth not despite them, but because of them. I see my purpose in my loving family and friends, my writing career, and my nonprofit, We Win, that tries to help others recovering from neurological injury find their way forward in our broken healthcare system. ¹⁴ Because rehabilitation services are deeply underfunded by insurance companies, We Win helps individuals access physical, occupational, speech and mental health therapy. It may not be the perfect life I imagined, but it's still pretty great.

Lata Mani, an academic who suffered a traumatic brain injury after a car accident in 1993, describes a similar recalibration of her imagined life in the immediate aftermath of her injury: "I found myself needing to rethink everything from the ground up. To give one example, for several years my life seemingly consisted of little other than breathing in and out! I had to learn to set aside judgment and shame about the 'value' or 'purpose' of my life." ¹⁵

Before Ray's spinal cord injury at twenty-nine, her mother would pester her about her choice to become an artist and date Robert, a non-Indian musician. She wanted Ray to be an engineer and marry an Indian doctor. But after her injury, Ray could still be an artist, whereas a career in engineering might not have worked out. Robert stayed with her and supported her through her injury, and they are still together twenty-five years later. Her uncle joked that if she had had an arranged marriage with a "suitable Indian boy", he might not have stayed, given the cultural taboo on disability. Ray says, "This idea that you have to go to college, you have to become a lawyer, doctor or engineer...then you have to marry the perfect man that has the perfect job and then you have to buy a house and have children. I think I taught my mom that isn't always the life you have to live."

As a community, we have a long way to go to open people's minds, but I think we're on the right track. The first step is to increase disability visibility. The next step is to talk about these issues within our families and broader circles. In writing these words, I seek to amplify the powerful voices of activists like Cara Yar Khan, Priya Ray, Afshin Bhimani, Rhi, Nicolas Uppal, Virali Modi, and Vyoma Raman, who are contesting outdated attitudes towards disability. In reading and sharing these words, you, too, are making that change. 1. US Census Bureau.
Disability Characteristics, American Community Survey. 2019. Retrieved from https://data.census.gov/cedsci/table?q=S0201&t=Disability&tid=ACSST1Y201...
2. Sharma, Akhil. Family Life. New York, W. W. Norton & Company, 2014
3. Venugopal, Meera. "Virali Modi: The Disability Rights Activist You Should Know About." NewsBytes, NewsBytes, 3 Mar. 2021, https://www.newsbytesapp.com/news/inspirational/what-s-disability-asks-w....
4. Elias, P. "The silence about mental health in South Asian culture is dangerous." New Republic (2015).
5. Nguyen, Quynh, and Margaret Hughes. "Perspectives of first generation Asian American parents towards children with disabilities and their educational programs." The Journal of Special Education Apprenticeship 2.2 (2013): 4.
6. Bhimani, Afshin. Desi and Diseased. www.desianddiseased.com. Accessed on December 13, 2021.
7. See, for example, Rajani, Harshada. "I Loved Fashion & Getting Dressed Up - Then I Had A Stroke," Refinery 29. March 10, 2017. https://www.refinery29.com/en-us/2017/03/138726/wheelchair-fashion; "Why Do We Choose to Survive after Tragedy," Huffington Post. May 17, 2017. https://www.huffpost.com/entry/why-do-we-choose-to-survive-after-tragedy... and "After a Stroke, I Spent 4 Months Trapped in My Own Body - Here's What That Was Like," She Knows. November 14, 2018. https://www.sheknows.com/health-and-wellness/articles/1142051/locked-in-...
8. Larson, Paul. "Karma." Encyclopedia of Psychology and Religion (2020): 1318-1318.
9. Kim, Nayoung. "Asian Parents' Perceptions of Child Disability and School Contact for Services." Diss. 2010.
10. Spiegel, Alix and Lulu Miller, hosts. "The Problem with the Solution." Invisibilia, season 2, episode 3, NPR, 1 Jul 2016.
11. Daudji, Anisa, et al. "Perceptions of disability among south Asian immigrant mothers of children with disabilities in Canada: implications for rehabilitation service delivery." Disability and rehabilitation 33.6 (2011): 511-521.
12. Luthra, Nidhi. "The Experience of South Asian Immigrant and Canadian Mothers of Children with a Developmental Disability: A Mixed Methods Study" (2018).
13. Mehta, Sarika D. "Deaf South Asian Americans: Zara's Story." Sarika D. Mehta, 2 Apr. 2019, https://sarikadmehta.com/2013/07/09/deaf-south-asian-americans-zaras-story/.
14. See https://www.wewintogether.org/
15. Quoted in Subramanian, Arundhati, Women Who Wear Only Themselves (Speaking Tiger: 2021): 115.

Harshada Rajani is a young stroke survivor and freelance writer based in Charlotte, NC. She also co-founded We Win, a nonprofit dedicated to helping people recovering from neurological injuries access rehabilitation services. Read more about her story and her writing at harshadarajani.com.

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Remaking a World That Wasn't Built for Us

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Harshada Rajani, a young stroke survivor, recounts the harmful ways that South Asian American communities view disability. Through her story and the voices of other activists with disabilities, they are pushing back to break through old, ableist beliefs and longstanding stigmas to work toward disability inclusion and acceptance.

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A Disability History of the United States

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A Disability History of the United States

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Dreaming Disability Justice Into our Future

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Dreaming Disability Justice Into our Future

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Lydia XZ Brown: Dreaming Disability Justice into Our Future

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In recent years, disability activism has come into its own as a vital and necessary means to acknowledge the power and resilience of the disabled community, and to call out ableist culture wherever it appears. explores the art-activism of Sins Invalid, a San Francisco Bay Area-based performance project, and its radical imaginings of what disabled, queer, trans, and gender nonconforming bodyminds of color can do: how they can rewrite oppression, and how they can gift us with transformational lessons for our collective survival.

Crip Kinship

Grounded in their Disability Justice framework, Crip Kinship investigates the revolutionary survival teachings that disabled, queer of color community offers to all our bodyminds. From their focus on crip beauty and sexuality to manifesting digital kinship networks and crip-centric liberated zones, Sins Invalid empowers and moves us toward generating our collective liberation from our bodyminds outward.

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Crip Kinship: The Disability Justice & Art Activism of Sins Invalid

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Crip Kinship: The Disability Justice & Art Activism of Sins Invalid [Kafai, Shayda] on Amazon.com. *FREE* shipping on qualifying offers. Crip Kinship: The Disability Justice & Art Activism of Sins Invalid

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I Grew Up Latinx & Disabled — & I’m Creating The Change I Want To See

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"Many folks are so eager to highlight ableism in communities of color, yet lack a basic analysis of how white supremacy is a root cause that keeps communities of color from accessing information, education, and funding."

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National Coalition for Latinxs with Disabilities

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National Coalition for Latinxs with Disabilities

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NATIONAL COALITION FOR LATINXS WITH DISABILITIES

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Conferences

A safe space for Disabled Latinxs, our family, friends, and allies to come together to build community and set our agenda.​

Education

We educate on a variety of issues that are important to the Disabled Latinx community.​

Committees

Our CNLD leadership work together through committees designed to tackle specific interests of our coalition members. ​

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NATIONAL COALITION FOR LATINXS WITH DISABILITIES

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We imagine a society in which the human rights of Latinxs with disabilities are upheld and all their intersecting identities are embraced. *** Imaginamos una sociedad en la que se respeten los...

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No matter where your company is located, we are able to connect you live with job seekers from all over the US. You will talk one-on-one with talented jobs seekers with disabilities and, afterwards, fill your pipeline with resumes of all attendees.

Job seekers also have the opportunity to leave a 3 minute Video Message. There has never been a more complete online career site for recruiter and job seeker.

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Jobs for disABLED Talent - Online ABILITY Job Fair

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No matter where your company is located, we are able to connect you live with job seekers from all over the US. You will talk one-on-one with talented jobs seekers with disabilities and, afterwards, fill your pipeline with resumes of all attendees. Job seekers also have the opportunity to leave a 3 minute Video Message.

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Dave Coyne | Social Justice: A New Model of Practice for Sign Language Interpreters?

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Dave Coyne | Social Justice: A New Model of Practice for Sign Language Interpreters?

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Dave Coyne | Social Justice: A New Model of Practice for Sign Language Interpreters?

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" Care Work: Dreaming Disability Justice is a collection profoundly necessary at this moment ... the essays share a fundamental hypothesis: to achieve social justice, ableism must be destroyed. Personal narratives and accounts of organizing are voiced from Black and brown and queer disabled people, radically reimagining the ways our society is structured, uplifting visions and models for care webs that create collective access." &emdash; Broadly (Best Books of the Year) Care Work is equal parts on-the-ground dispatch from the disability justice movement and practical field guide to liberatory access. Rather than something to be begrudgingly tacked on, accessibility, Leah Lakshmi Piepzna-Samarasinha shows us, might be joyous and collective." &emdash; Smithsonian Magazine Brilliant Imperfection: Grappling with Cure and Exile Care Work . As one of the original thinkers of Disability Justice, I'm overjoyed that artists and activists like Leah are writing books like this one that helps water the roots of Disability Justice. This book is coming from the bed, the streets and on stages that Leah has spoke, taught, performed and struggled on -- that's why it's so accessible and brings lived knowledge into our outdated, stiff institutions and activist movements. In this era of hyper capitalism, toxic hypermasculinity, and White supremacy, we desperately need Care Work. " &emash;Leroy F Moore Jr., co-founder of Sins Invalid, co-founder of National Black Disability CoalitionM Archive

"Page after page, Leah Lakshmi Piepzna-Samarasinha documents the necessity, power, and sheer brilliance of disability justice. Be prepared for her words, stories, and political thinking to shake up what you know about care and access, revolutionary dreaming, and present-day resilience." &emdash;Eli Clare, author of and Spill

"As a Black disabled activist, cultural worker, and collector of art, books and music by people of color with disabilities for more than twenty years, I'm excited and thirsty for Leah Lakshmi Piepzna-Samarasinha's , co-editor of Revolutionary Mothering Care Work is a necessary intervention for those in queer/trans people-of-color spaces and white disability spaces alike, but more importantly, it's an offering of love to all of us living at multiple margins, between spaces of recognition and erasure, who desperately need what Leah has to say. This book is an invitation to dream and to build and to love, as slowly and imperfectly and unevenly as we need to." &emash;Lydia X.Z. Brown, author of All the Weight of Our Dreams: On Living Racialized Autism

"Leah knows that the world we deserve is a world shaped by the honest, messy, skillful genius of disabled queer femmes of color. Reading this book allows you to live inside the gorgeous, uncomfortable, emergent, compassionate world that disabled femmes of color have been making all along. Leah cares for us all with this work, but not in the apologetic, default, mommy mode you may be trained to expect. This care is the survivor-sourced, survivor-accountable, saltysweet truthtelling we need to (guess what?) SURVIVE." &emash;Alexis Pauline Gumbs, author of

"Leah writes brilliantly about sick/disabled/mad/neurodivergent genius, collective care work, and all-too-familiar patterns of abuse and trauma that happen even/especially in radical spaces/marginalized people's communities.

Leah Lakshmi Piepzna-Samarasinha is the Lambda Literary Award-winning author of the non-fiction books Dirty River: A Queer Femme of Color Dreaming Her Way Home and Consensual Genocide , and the poetry books Bodymap and Love Cake , and is the co-editor of The Revolution Starts at Home. A lead artist with disability justice performance collective Sins Invalid and co-founder of queer and trans people of color performance troupe Mangos With Chili, she performs and teaches across North America.

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Care Work: Dreaming Disability Justice [Piepzna-Samarasinha, Leah Lakshmi, Piepzna-Samarasinha, Leah Lakshmi] on Amazon.com. *FREE* shipping on qualifying offers. Care Work: Dreaming Disability Justice

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Disabled Asian Americans Deal With Racism and Ableism

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Disabled Asian Americans Deal With Racism and Ableism

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By Shruti Rajkumar, AsAmNews Intern
At the beginning of the COVID-19 pandemic, disabled Korean and transracial adoptee Mia Ives-Rublee would leave the house in North Carolina wearing a mask to protect others as well as herself due to her reduced lung capacity. Her ensemble was completed with a hood and sunglasses, which she wore to try to mask the fact that she's Asian as a way of avoiding racist comments.

"If they see that I'm Asian, and I'm wearing a mask, how are they going to perceive that?' It was just like, how do I make sure I don't get hate-crimed by wearing a mask and being Asian, and how do I make sure I protect myself?" said Ives-Rublee.

According to the Centers for Disease Control and Prevention, approximately 1 in 10 Asian adults have a disability. Disabled Asians, such as Ives-Rublee, face the dual struggle of experiencing racism and ableism in their everyday lives.

In the 1990's, chair and co-founder of Asian and Pacific Islanders with Disabilities of California (APIDC) Patricia Kinaga said that she didn't notice a lot of non-profit organizations out there supporting disabled APIs. After doing research, she found that some nonprofits were focusing on mental disabilities but not on physical or developmental disabilities. "Let's face it, as APIs in general, we're often invisible. So the additional overlay of APIs with disabilities [are also] invisible," Kinaga said.

This lack of intersectionality was something that Ives-Rublee noticed as well, especially in her college years. When she went off to college, Ives Rublee said others perceived her as an Asian American, an immigrant, and as "someone who doesn't belong here," which forced her to have a reckoning with her identities. She started getting involved in Asian American organizations and disability organizations, however, she said she never felt herself in those spaces.

A photo taken during Mia Ives-Rublee's work on the Warren Campaign. She was the Community Regional Organizing Director and was helping to do outreach to the Disability and AAPI community. This photo is of Ives-Rublee, Loren Whitaker (an organizer)(the tallest), and a friend of Ives-Rubles. Photo courtesy of Mia Ives-Rublee.

"I would go to my Asian American organizations, and I'd be like, 'Well, you're not being very welcoming of disabled people, you're going to restaurants that are inaccessible.' And then I would go to the disability community, and I'd be like, 'I'm very interested in healthcare, and education, but I'm also really interested in what it means to be a disabled Asian American, and what it means to face discrimination as an immigrant and what it means to be a person of color.' I never really felt like I was seen, I would either have to be promoting one side of myself, or another side of myself," Ives-Rublee said.

In order to help the API and disabled communities reach one another, Kinaga connected with disability rights advocate Gordon Anthony, Hope Yasui, and Dr. Chong Suh to hold a statewide conference that brought together mainstream service organizations for disabled people, such as the Department of Rehabilitation, and API nonprofit organizations. That was the genesis of APIDC, Kinaga said.

APIDC aims to put a face to APIs with physical, mental, and developmental disabilities. Kinaga said it also puts a focus on empowering disabled APIs, connecting them with one another through conferences and their Youth Leadership Institute, as well as to educate policymakers on challenges faced by people of these two communities.

"Our thought is that will be how we can further build, empower, [and] educate. The intersection...that's what we're trying to [do], that's why we exist," Kinaga said.

Kinaga said that although the organization covers a lot of different topics and does support K-12 and college students, there is a focus on young adults. This is because primary schools and colleges have strong special education programs and student disability services offices to support disabled students, but there is little support for young adults.

"After graduation, there is a cliff. What we have focused on [at APIDC] is to support the development of the college students with disabilities so that they're better equipped to find a job afterwards, which is the focus of our Youth Leadership Institute. And that is exactly that, we're training future leaders," said Kinaga.

Jennifer Kumiyama, who identifies as a Black, API, cis-woman with a disability, said APIDC came into her life when she really needed it. At the time, it was the 20th anniversary of the Americans With Disabilities Act, and she was a performer at Disney California Adventure Theme Park. She said she had been dealing with mental health issues, and was feeling the pressure of being an advocate for the disabled community.

"I think APIDC was proof that there were people not just in the API community, but in the API and disability community, with their boots in the ground, really doing the work to advocate for the betterment of the quality of life for people with disabilities. If I could describe meeting APIDC at the moment in my life where I did, I would describe it as a big hug," Kumiyama said.

Ives-Rublee said she had somewhat of an atypical experience dealing with oppression since she grew up in a White family. Although she experienced a lot of alienation at school, ableism was talked about a lot in her family. Her parents always made sure she got the accommodations and medical care she needed, which taught her how to self-advocate. She knew how to deal with disability, however, she said she didn't know how to deal with racism.

"Growing up, I just didn't have the words to describe my experience very well. I don't really fault my parents for that...they never had to experience it. They didn't really know how to explain the issues that I was experiencing, and so I didn't really talk to them about those issues. I don't know if I really identified as being Asian American as a kid, because there's just not really something we talked about," Ives-Rublee said.

Kumiyama said that it's important to fully understand and accept that people don't just identify as one thing, and that disabled people are found within every category. She believes that disabled people should be at every table when discussing topics such as race, education, employment, and so on.

In reflecting on the recent hate against not only the API community but also the Black community, Kumiyama said it's important for there to be discussion on how disabled people within those communities can likely be in vulnerable positions when faced with hate crimes.

"I just think hate...regardless of what your color is, should always include the discussion of how it affects the disability community. We're stuck in our houses already due to this pandemic, and then we have these hate crimes that are going on. How much more exclusive can things in our society be at the moment for people with disabilities?" Kumiyama said.

Ives-Rublee at a Black Lives Matter protest with my friend Keri Grey. We organized to support Black disabled lives. Photo credit: Jennifer White-Johnson

Within the education system, Ives-Rublee said the history of different communities are taught in silos, such as a Black history unit and women's rights unit, which leaves out the experiences of those living intersectional lives. She said that it's important to acknowledge how systems of oppression are interconnected.

"We really can't be just fighting for one group's rights without fighting for all of these other groups' rights, because we're not going to fix the system without completely rewriting it. Being able to connect all of those dots, and then being able to have conversations with people...that emote what is going on in each community, and try and build those bridges in those gaps is extremely important to me," Ives-Rublee said.

Rather than sticking to one silo and participating in organizations that have no interest in developing an intersectional lens, Ives-Rublee said she finds fulfillment in talking to organizations about how disability intersects with their work and how they can do better.

"I just think it's important to gain more understanding about what ableism and what racism are, and how they interact with each other, and how they interact with so many other 'isms' that are out there. The biggest lesson to me has been that I will never know everything there is about ableism, about racism, about colorism etc. When you have gotten to the point where you're not willing to learn more about it, then you should be concerned," Ives-Rublee said.

AsAmNews has Asian America in its heart. We're an all-volunteer effort of dedicated staff and interns. Check out our new Instagram account. Go to our Twitter feed and Facebook page for more content. Please consider interning, joining our staff, or submitting a story or making a contribution.

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Disabled Asian Americans Deal With Racism and Ableism - AsAmNews

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By Shruti Rajkumar, AsAmNews Intern At the beginning of the COVID-19 pandemic, disabled Korean and transracial adoptee Mia Ives-Rublee would leave the house in North Carolina wearing a mask to protect others as well as herself due to her reduced lung capacity.

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Anti-Blackness and Ableism in the Workplace

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Anti-Blackness and Ableism in the Workplace

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When I went for a job interview in the summer of 2015 for a high-powered federal position, I remember thinking that unlike most people who had come in with hopes of obtaining the job, my anxieties were different. I was of course, questioning if my knowledge of writing and editing would be enough to convince them to give me the job. I was also thinking about the performance I was giving, because in a federal building, a black person in a manual wheelchair with tied dreadlocks in a mauve three-piece suit will always be looked at.

With my interview anxiety pushed aside, as I rolled down the hallway, I found myself unconsciously doing what most black people do without telling anyone: counting the number of black employees in a new space. By the time I reached the administrative assistant's office at the far end, that number was two, and it forced me to fix my face when I was later told that the total staff for the department was in fact, 42. Was I surprised? No. But as the interviewer surveyed my wheelchair and my suit and asked, "are there any accommodations you would need before you started?" I remember having to hide this information in my head and instead focusing on the issue at hand, thinking, maybe they get it. Most employers wouldn't bother to ask this ahead of a start date. They might not understand the critical lack of diversity they had, but at least they understood this. Right?

Fast forward three months, when a series of snowstorms came to Washington, D.C. and I found myself the sole occupant of the hallway while the rest of the department teleworked. Why? Because, as they put it, I was a new hire and had no personal leave available for snow days. But arguing over email at 6:00 a.m. as I stared at 2 feet of snow outside my window or flagging down buses in the middle of the roads while navigating icy sidewalks was not my idea of a "snow day."

When someone from the legal department later spotted me wheeling slowly to my freezing office, preciously cradling a cup of coffee in my lap, they asked me, "Isn't there a blizzard going on? What are you doing here?" I responded, "I was told I had to come by HR. Still on probation." Their answer gave me pause. "But that's...not right. That's a complaint on record against the department," They told me I should file one; but to borrow the metaphor from scholar Kimberlé Crenshaw, I heard the intersectional brakes squealing loudly in my head. How could I file a complaint? I was a young federal career worker new to the system (the 2nd youngest in my office and the lowest paid), the only visibly disabled person on staff, and one of three black people on the floor, in a position that, as one of the black women in the office told me, pulling me into the mail room on my first day, hadn't seen more than three black faces in the 40 years she'd been there.

Blackness and disability had gotten me the job initially as a "super diversity hire," which I overheard when they thought no one was listening, but it had also cornered me into an impossible position of silence and discomfort that demanded I do everything possible to keep my supervisors happy, at least initially. Even when situations arose where they were squarely in the wrong, I remained unable to speak.

Crenshaw notes that for too long, societies have struggled with trying to figure out ways to honor multiply-marginalized people in making use of their various talents. My job was no different. Hearing someone in my office tell me that I was a surprisingly highly qualified writer with two master's degrees in English felt like a backhanded compliment. Hearing a claim that to find me as a queer person with cerebral palsy too made me a virtual unicorn just cemented the issue further. This country has a sordid history in dealing with black labor and forasmuch as we claim inclusion and equity, watching black bodies make up disproportionate sectors of the service and minimum wage industries is a constant reminder of how we are actually seen. And disabled people are woefully under/un-employed. It stings to know that somehow making it out of the traps society places on us because of our identities is commendable.

My father once told me that he approved of affirmative action strictly because it forced employers to find people outside of their own biases and hire them. These days, however, we also need to look at the negative side of the equation for the hired person. An individual hired through affirmative action is often put into a position of unbalanced expectation, as though they need to be grateful to executives for the opportunity. This is where many diversity initiatives fail, because they don't examine the foundational lack of inclusion.

But this is also where the equation differs. There are repeated calls for a closer look at the lack of people of color in every level of employment. But disability is not as commonly considered "diversity," and it has much to do with stigma and assumption about things like performance and value. When connecting the two, the question of disabled people of color working in visible roles is one that often assumed to be covered under one umbrella or another. But so much of the work that I do in my current role as a doctoral student in racial disability theory looks at how the connected nature of black disability is not in fact, recognized.

Misunderstandings of what it is like to be both and black and disabled cause extra problems where there need not be any. I felt unable to question my employer during the snowstorm because I didn't want to be perceived as an angry black person, or to seem ungrateful to the people who essentially "took a chance" by hiring me. But in reflecting on this, I must remember not to undermine my own self confidence.

Employers must remember that employees are human beings who bring with them not only their personal experiences but also other people's assumptions. No one should be expected to express only parts of themselves in service to making a supervisor or another employee feel better. Coworkers with intersecting marginalized identities should be understood as valuable for the wealth of perspectives they provide, and should be honored in ways that are authentic to the company's mission. I know the value I bring to workplaces, but it's time for organizations not only to appreciate that value, but actively work to bring in more of it.
D'Arcee Charington Neal (he/they) is a professional storyteller, and 2nd year doctoral student at The Ohio State University in English and Disability Studies, focusing on the intersections of black digital media and disabled erasure within Afrofuturism. When not theorizing about black techno-agency, he works as a disability and writing consultant, and professional speaker for clients like Conde Nast, Uber, NASA, The World Bank, The Ford Foundation, and many non-profits. Ultimately, as a queer disabled digital griot, he believes that the future can and should be both, accessible, and in Wakanda, forever.

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Anti-Black Racism and Ableism in the Workplace - Disability & Philanthropy Forum

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by D'Arcee Neal When I went for a job interview in the summer of 2015 for a high-powered federal position, I remember thinking that unlike most people who had come in with hopes of obtaining the job, my anxieties were different. I was of course, questioning if my knowledge of writing and editing would be [...]

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Autistic Women & Nonbinary Network (AWN)

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It's my favorite time of the year! Halloween is coming up soon, and for many Latine people like myself, it's also close to Day of the Dead (Día de los Muertos). I love this season of spirits, spooks, and sweets.

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Autistic Women & Nonbinary Network (AWN)

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Disability Scholarships for Higher Education - Access Scholarships

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Great disability scholarships include: Microsoft Disability Scholarship, Wells Fargo Scholarship, OAR Scholarships, and more.

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Scholarships for Students with Disabilities

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Scholarships for Students with Disabilities

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Access and Disability Student Groups at Harper

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Access and Disability Student Groups at Harper

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Harper ADS New Student Programs: Harper College

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Available ADS programs and services including one-on-one disability advising and support, student clubs, and social activities.

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Welcome to Access and Disability Services! Since 1973, ADS has been committed to providing accessible programs, services, and support to the Harper community. We are a resource for Harper College students, faculty, and staff. Utilizing the social justice model of disability, we provide services on an individualized basis through an interactive and inclusive process.

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"Thoughtful and illuminating, this inspiring story is a must-read for activists and civil rights supporters."
- Publishers Weekly, Starred Review

"A driving force in the passage of the Americans With Disabilities Act looks back on a long career of activism . . . A welcome account of politics in action, and for the best of causes."
- Kirkus Reviews

"Consider this book an inspiring call for inclusiveness, courage, equity, and justice as well as a reminder of people's power to change the world for the better."
- Booklist

"Heumann's personality shines throughout. Her voice is witty, persistent, and at times irreverent as she immerses readers in her story."
- Library Journal

"With an energetic pace and a youthful voice, Ali Stroker narrates disability rights activist Judith Heumann's memoir. . . . Along with her friend and mentor, the late Ed Roberts, Heumann is a freedom fighter Americans need to know. This audiobook makes getting acquainted a delight."
- AudioFile Magazine

"Reading this memoir is like sitting down with a good friend and talking for hours, as self-described extrovert Heumann tells powerful and engaging stories from the frontlines of the disability civil rights movement."
- Health Affairs

"A moving chronicle of social change, Being Heumann will restore your hope in our democracy and the power of our shared humanity."
-Darren Walker, president, Ford Foundation

"Judy's advocacy for disability rights began as a fight for her own future and then, as a leader of the movement, spanned the nation and the globe. As secretary of state, I relied on Judy's insights, knowledge, sass, and wit to elevate advocacy for disability rights in our diplomacy. This important book will help ensure that every person gets a chance to live up to their full potential and will always have a place at the table."
-Hillary Clinton

"It's one of the ironies of American life that the one category into which almost all of us will fit at some time in our lives-people with disabilities-is often the last on the list of included groups in this country. . . . I met Judy Heumann almost four decades ago, and her writing, activist skills, and kindness helped me to see this simple truth. Her life story as an activist will enlighten readers everywhere."
-Gloria Steinem

"Judy's vision of a society that embraces all aspects of the human condition and where we face adversity with wisdom is truly transformative. . . . All who read her book will be better for it."
-Sheryl Sandberg, COO of Facebook, author of Lean In

"Judy's story has shaken me to the core. For the first time, I see myself in someone else. Her fierce advocacy and work changing the laws around disability rights have undeniably paved the way for me to achieve what I have today. . . . A must-read."
-Ali Stroker, Tony Award-winning actress

"A marvelous memoir by a disability hero who has paved the way for many of us. Full of fascinating stories from the disability rights movement, this book will guide future leaders as we work toward a barrier-free world."
-Haben Girma, author of the bestseller Haben: The Deafblind Woman Who Conquered Harvard Law

" Being Heumann changed me. This clear-eyed, gripping book is necessary reading for anyone in a body. Judy Heumann is a true heroine: practical, courageous, and totally badass."
-Sharon Guskin, author of The Forgetting Time

"Full of stories of triumph, love, and total badassery, Being Heumann is a look into a world and moment in history that very few know or appreciate. You don't have to have a disability to completely relate to Judy's story. Haven't all of us been dismissed by others at some point in our lives? Readers will finish this book with a whole new perspective on people with disabilities and on their own lives too. Judy doesn't just believe in the power of community and the potential of democracy to deliver equality and justice-she and her many friends and allies set out to prove, against all odds, that it is true. Their epic struggle to achieve civil rights protections for people with disabilities has remade our world, whether we realize it or not. Intimate and engrossing, this book is a profound gift. It should be read and cherished by all, as both an unforgettable portrait of one of our greatest activists and a road map for how to build a more just and inclusive world."
-Nicole Newnham and Jim LeBrecht, directors of Crip Camp

"For everyone who cares about human rights around the world, Judith Heumann's moving story and message of belonging is also a powerful call to action. A must read."
-Yetnebersh Nigussie, disability rights activist

"If you're searching for an excellent primer on the disability justice movement or a firsthand account of the power of the collective voice, you'll want to pick up this book!"
-Jey Ehrenhalt, Teaching Tolerance School-Based Programming and Grants Manager

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Being Heumann by Judith Heumann, Kristen Joiner: 9780807002803 | PenguinRandomHouse.com: Books

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A Publishers Weekly Best Book of the Year for Nonfiction "...an essential and engaging look at recent disability history."- Buzzfeed One of the most influential disability rights activists in US...

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Visionaries of the Creative Arts (VOCA), a nonprofit organization based in Washington, DC, was established in July 2019 to provide space for Deaf and hard-of-hearing BIPOC artists to create and showcase their talents onstage and through the various mediums of creative arts.

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We are a digital movement and community that is committed to increasing the participation and representation of Black and brown women and girls with visible disabilities - DIVAS - Dynamic, Illuminating, Victorious, Achieving Sisters.

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We are a digital movement and community that is committed to increasing the participation and representation of Black and brown women and girls with visible disabilities - DIVAS - D ynamic, I...

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What is HEARD?

We are deaf and disabled people who support deaf/disabled incarcerated people. We believe that prisons should be abolished, even as we fight for the rights and dignity of our community members inside.

We support deaf/disabled individuals to fight for their rights, access emotional and legal support in their language, learn about prison and police abolition, and access financial support while inside and in the crucial months after release.

We support lawyers and advocates to learn about and defend the rights and dignity of deaf/disabled incarcerated people.

We organize disability communities and social movement organizations to understand incarceration and policing as part of a system that targets disabled people, that disables people, and that must be abolished.

We believe we must unite across identities, communities, movements, borders, and all forms of oppression and violence to end ableism, racism, and capitalism. We believe that deaf people are part of disability communities and that we must reject disability hierarchies and rigid definitions of disability.

Our Vision

HEARD envisions a world where multiply-marginalized disabled people are inherently valued and have the resources, safety and love they need to thrive and live self-determined lives. We dream of a world that honors our interdependence, invests in our healing from harm and trauma, recognizes our potential for growth and transformation, and ensures our collective liberation. There are no police or prisons in the future because our communities have created the conditions, developed and provided the resources, and shared the necessary knowledge to make all forms of policing and incarceration obsolete.

Support Our Work!

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Advancing the Human & Civil Rights of People with Disabilities in Illinois

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Advancing the Human & Civil Rights of People with Disabilities in Illinois News Quick Links Equip for Equality is interested in learning more about these tests and how they impact job seekers with disabilities. Please take this Big Box Store Survey and contact us with any questions.

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Yinka Shonibare CBE RA - Yinka Shonibare CBE RA

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Yinka Shonibare CBE RA's interdisciplinary practice examines race, class and cultural identity through the media of sculpture, painting, photography, film, textiles and public works.

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Disability Justice: Transgender Law Center

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Disability Justice: Transgender Law Center

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The Disability Project magnifies the leadership, collective power, analysis, and visibility of trans and queer disabled, Deaf, ill and Mad communities.

Believes that work about ableism is work about Eugenics, state control, and supremacy.

Understands that our work is inherently abolitionist.

Knows that ableism works as a mechanism and product of anti- Black racism, misogyny, and the hatred of the poor.

Recognizes that access is crucial to disabled people's dignity and participation and is a vital part of anti-ableism; yet it alone is not an organising strategy.

Knows that Disabled and Deaf trans people, especially Black and brown people, navigate intense amounts of police violence, surveillance, and state control.

Recognizes that the experience of disability and illness are highest within marginalized trans communities and overlaps exactly with a heightened experience of violence.

Believes that to achieve meaningful trans justice, disability activism, analysis, lived experience and expertise need to be properly centered and disabled leadership followed.

Is clear that without Disability Justice none of us are free.

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Disability Project - Transgender Law Center

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Housed at Transgender Law Center through a 2019 Soros Justice Fellowship, the Disability Project magnifies the leadership, collective power, and visibility of LGBTQ disabled/Deaf/ill constituents.

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Why Disability Justice is Crucial for Liberation

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Why Disability Justice is Crucial for Liberation

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Why Disability Justice Is Crucial for Liberation

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Leah Lakshmi Piepzna-Samarasinha, author of The Future Is Disabled, explains how disabled wisdom can help us all fight fascism and climate change.

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There Is No Justice That Neglects Disability

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There Is No Justice That Neglects Disability

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"Disabled people live at the intersection of all systems of oppression and social justice issues. There isn't one issue or one intersection where you will not find disabled individuals advocating for or experiencing the effects of those issues." - Daphne Frias, youth activist, organizer, storyteller, and peacebuilder.

If the philanthropic sector is to advance social justice, diversity, equity, and inclusion, then it must recognize disability as essential to its work. This supplement offers critical perspectives and recommendations for dismantling ableism. Sponsored by the Disability & Philanthropy Forum

Last July marked the 31st anniversary of the Americans with Disabilities Act (ADA), a historic civil rights law. We have seen progress in the expansion of access to services and spaces enjoyed by Americans, but the disability community continues to experience above-average rates of poverty, incarceration, disenfranchisement, and social segregation.

And yet there is hope. We have witnessed how effective an intersectional approach to organizing is, particularly on matters of racial and environmental justice. We have seen a revitalized commitment from leaders in various sectors, including government, business, and philanthropy. The moment has come to advance and recognize the promise of disability justice in the United States.

We work in different sectors-government and philanthropy-but share the conviction that by centering disability we have an opportunity to create a just society that is more accessible and inclusive for everyone. To make this belief a reality, our efforts must center conversations that have been relegated to the sidelines as well as the voices of expert advocates who were previously siloed. Government has addressed disability for three decades, with the ADA serving as a guide. The philanthropic sector is beginning to recognize disability inclusion as a core element in its justice work and acknowledges that each grantmaking organization is at a different stage in its disability inclusion journey. Today we are sharing our personal experiences to reflect on the potential of an intersectional, cross-sector approach that will advance justice for all.
If government is to serve the people, then disability justice must be a framework we bring to every policy discussion.
Rep. Ayanna Pressley: In January 2020, I disclosed my alopecia diagnosis in an interview with . The disability community welcomed me. Viewing my diagnosis as an asset and an opportunity to shed light on disability issues, members of the community reached out to me from various organizations and coalitions. In my approach to legislating, I have always prioritized intersectionality, but my dialogue with disability activists illuminated new ways in which the disability community has been systemically marginalized in public policy. Today, we are still in the civil rights movement, and the struggle for racial and disability justice are woven together. Some commentators give the impression that Rosa Parks sat, Martin Luther King Jr. spoke, John Lewis crossed a bridge, and then our full liberation was realized. But our struggle continues, and our destinies are bound together.

Far too often in the daily work of government, people are noted as numbers on a grid. But people live in intersectionality, not in checked boxes. Encouraged and emboldened by generations of activists, I am proud to be part of a new generation of leaders on Capitol Hill who take an intersectional approach to disability justice. This effort starts with recognizing that the disability community is not a monolith. From health-care access to employment, and from marriage rights to COVID-19 recovery, every policy issue is a disability issue.

In formulating my legislative agenda, I consistently look for the ways in which disability is affected by the proposals on which I am working. For example, discussions of the racial wealth gap that do not explicitly address the challenges facing Black and brown disabled people leave behind so many individuals and do not paint an accurate picture of the economic injustice these communities face. Amid the current national reckoning on racial injustice, we fundamentally believe that disability justice must be part of an intersectional conversation. We must affirm that Black disabled lives matter. Nearly half of the individuals murdered by police in the US have a disability, and Black girls with disabilities are criminalized in US schools at four times the rate of their white peers, beginning as early as preschool. We know that our systems are deeply broken, and together, we must legislate and invest in healing, justice, and accountability. We must start with honest conversations about where matters stand and what changes must follow.
The Numbers on Disability
Statistics show that disability is a natural part of the human experience. Philanthropic foundations must recognize this reality in their work.

26% (1 in 4) of American adults have some type of disability. In the United States, 61 million people live with a disability, which can be lifelong or acquired at any time. US and international law protects the rights of all people with disabilities including physical, sensory, intellectual, developmental, and mental health disabilities, as well as chronic illnesses.

15% of the global population lives with a disability. More than one billion people globally live with a disability. Eighty percent of persons with disabilities live in developing countries.

27% of people with disabilities live in poverty, compared with 12% of people without disabilities. Disabled people are more than twice as likely to live in poverty than those without disabilities. Poverty can increase the likelihood that a person with an existing health condition becomes disabled through inaccessible environments or lack of access to needed health services.

1 in 5 women in the world have a disability. Disability is part of diversity and intersects with all identities, including class, gender, race, ethnicity, and sexuality. Being disabled disproportionately affects those living in poverty, women, and people of color. People with disabilities are three times more likely to experience violence than those without disabilities.

1⁄3 of COVID-19 survivors have long-haul symptoms. People with disabilities face increased risk of contracting COVID-19, dying from COVID-19, as well as experiencing poorer health outcomes, whether or not they are infected with COVID-19. With one-third of COVID-19 survivors in the United States experi- encing long-haul symptoms, there is a "rise of long COVID as a persistent and significant health issue" that may lead to disability, according to the US Departments of Justice and Health and Human Services. If philanthropy is to build a more just and equitable society, it must combat ableism in its own institutions and practices, and recognize that disability is a key element in its work.
If the philanthropic sector is to advance social justice, diversity, equity, and inclusion, then we must recognize that disability is a key element in our work.
Rebecca Cokley: Growing up in the disability community with parents who were also little people, I saw disability as a beautiful thing. Bodies were amazing in their diversity, and people of all genders, races, and cultures found myriad ways to communicate, live, and exist. Based on the definition in the ADA, the disability community is large enough to encompass children in Flint, Michigan, who are approaching 5,000 days without clean water; Asian American victims of hate crimes; mothers with postpartum depression; and COVID-19 long-haulers. That the ADA definition of disability emphasizes the activities of daily life shows that disability is not about a diagnosis but about its effects on your life. When people assume that being a little person has the greatest impact on my quality of life, they're wrong. It's actually my migraines, and that's okay.

In my role at the Ford Foundation, I am responsible for developing strategy for our US disability rights program, the first of its kind at the foundation. In 2015, when the Ford Foundation issued its declaration to move its work to challenging inequality, disability advocates spoke out about the glaring absence of a disability lens. In the past, organizations have rarely responded to this type of response, in no small part because the disability community was not considered formidable or worth listening to. But in this instance, Ford Foundation CEO Darren Walker expressed his commitment to "embracing risk and reflecting honesty," which led the organization to examine disability bias, investigate the history of philanthropy's negligence and harm to the community, and determine a course of action to address historic harms with solutions.
We must seize this moment to advance and recognize the promise of disability justice in America.
Rep. Pressley and Cokley: The disability community has lived segregation, from specialized educational settings to community service programs and restricted employment opportunities. Our demand to philanthropy, government, and other sectors is not to be treated as a special case. Government and foundations alike must fund efforts to develop housing proposals to ensure a supply of affordable and accessible housing. Funders exploring ways to organize efforts in criminal justice reform must remember that 60 to 80 percent of people who are currently incarcerated have a disability, including individuals who acquired a disability while incarcerated. No effective approach to reentry, abolition, or de-escalation will be successful if disability is not included.

Disability is a cause and consequence of poverty. Philanthropic organizations that are committed to fighting poverty and inequality in the United States or globally will never meet their goals as long as disability is missing from their work. Even if a foundation is discomfited by the idea of putting up a neon sign that says "We fund disability," any philanthropic entity that addresses inequality or injustice in effective and comprehensive ways must include disability in its work. Any demographic data that is collected to understand populations served, affected, or employed must include disability if true diversity is to be reflected in the numbers.

Similarly, the federal government must move away from the bureaucratic excuses of the past, which required disabled folks to fit into specific boxes when it comes to data and benefits. This bias has resulted in public policy that does not acknowledge the community's diversity or recognize the fundamental rights of all people to pursue liberty, justice, livable wages, marriage equality, and fair housing.

The novel coronavirus has surfaced many existing inequities, and the impact on the disability community is clear. More than a third of all deaths tied to COVID-19 come from congregate settings, where people with disabilities make up a large percentage of all residents. More than one-third of individuals impacted by the novel coronavirus are likely to experience long-haul symptoms, a brand-new category of disability. COVID-19 has exacerbated existing mental illnesses due to increases in anxiety and social isolation, and for many individuals, there have been new diagnoses. The need for flexibility and rethinking how we work, how we receive health care, and how we learn has required us all to take a moment to ask ourselves why there isn't greater accessibility and flexibility to support how we live so that we may thrive.

Together, we can meet the moment, center individuals who are most impacted, and rebuild as a more just nation if we see disability as part of the continuing struggle for our full civil rights and liberties. We recognize that there is no justice that neglects disability.

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Help us further the reach of innovative ideas.Donate today.
Read more stories by Ayanna Pressley & Rebecca Cokley.

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There Is No Justice That Neglects Disability (SSIR)

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Achieving diversity, equity, and inclusion means putting disability justice in every policy discussion and making it part of the continuing struggle for civil rights.

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environmental conservation & protection - general

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nature / environmental conservation & protection

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nature/environmental conservation & protection - general

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social science / lgbt studies / gay studies

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social science / people with disabilities

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social science/lgbtq+ studies - gay studies

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women political activists - united states

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environmental conservation & protection - general

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nature / environmental conservation & protection

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nature/environmental conservation & protection - general

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social science / lgbt studies / gay studies

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social science / people with disabilities

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social science/lgbtq+ studies - gay studies

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Exile and Pride: Disability, Queerness, and Liberation

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Exile and Pride: Disability, Queerness, and Liberation [Clare, Eli, Spade, Dean, Morales, Aurora Levins] on Amazon.com. *FREE* shipping on qualifying offers. Exile and Pride: Disability, Queerness, and Liberation

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Krip Hop was founded by Leroy F. Moore Jr., an African American writer, poet, community activist who was diagnosed with cerebral palsy. Moore was born in New York in 1967 to an activist father loosely connected to the Black Panthers. His upbringing sensitized Moore to the challenges faced by African Americans and the disabled.As a youth, Moore discovered that most people had little knowledge of the historical impact of disabled African Americans. This led him to begin research, initially in the music industry.

Moore first spotlighted disabled hip hop artists in the early 2000s. He co-produced and co-hosted a three-part series on what he called „Krip Hop" for a Berkeley, California radio station. The „Krip Hop" series appeared on KPFA's Pushing Limits, which focuses on news, arts, and culture for the disabled community. The series' popularity inspired Moore to create Krip Hop Nation for disabled musicians, since little cultural work or music by people with disabilities had been recognized. „The Krip-Hop movement really makes the pain of the people feel visible", Moore said. „It goes a lot deeper than what people can see.

The primary goal of Krip Hop Nation is to increase awareness in music and media outlets of the talents, history and rights of people with disabilities in the hip-hop industry. In an interview, Moore expressed the hope that by listening to his music the audience would understand the need to question authority and the information provided to them. He said he wanted his listeners to learn about their community and to become open to all people. Issues such as racism and sexism are commonly discussed, and Moore hoped that people would examine possible ableism in their attitudes. According to Moore, Krip Hop Nation goes beyond producing music and the bling-bling associated with hip hop; the movement is about advocacy, education and overcoming oppression. For Moore the movement has sought to reclaim negative terms associated with the disabled (such as „crazy", „lame", „retarded" and „cripple"), using them to shock people into understanding and respecting the disabled African American community. Krip Hop Nation addresses discrimination against disabled artists in hip hop by publishing articles and hosting events, lectures and workshops. It has over 300 members worldwide. Moore has explained that „Krip Hop" is a play on „Hip Hop." Although the „Krip" part of the name refers to „crippled", it is spelled with a „k" to avoid association with the Crips.

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Krip Hop was founded by Leroy F. Moore Jr., an African American writer, poet, community activist who was diagnosed with cerebral palsy. Moore was born in New York in 1967 to an activist father loosely connected to the Black Panthers.

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6 Ways Your Social Justice Activism may be Ableist

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6 Ways Your Social Justice Activism may be Ableist

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I Am Not Your Inspiration, Thank You Very Much

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I Am Not Your Inspiration, Thank You Very Much

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Stella Young: I'm not your inspiration, thank you very much

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Stella Young is a comedian and journalist who happens to go about her day in a wheelchair - a fact that doesn't, she'd like to make clear, automatically turn her into a noble inspiration to all humanity. In this very funny talk, Young breaks down society's habit of turning disabled people into "inspiration porn."

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Disabled Person or Person with Disability? 

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Disabled Person or Person with Disability? 

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Disabled Person OR Person With a Disability?[CC]

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In recent years, on websites and new media locales, on flyers and in informal conversations, I've witnessed people add the word "justice" onto virtually everything disability related -- from disability rights based services and access audits to disability scholarship -- while doing nothing to shift either process or end goal, thinking that the word change alone brings that work into alignment with disability justice.

Not so. So when Jane Dunham with the National Black Disability Coalition asked me to write "What Is Disability Justice" for the 2015 SDS Pre-Conference Disability and Social Justice Summit, even though SDS was demonstrating NO commitment to Collective Access for those of us who cannot pay, physically or financially, for ableist transportation, I appreciated Jane's valuing my voice and contribution, and her efforts struggling with the unspoken and passive aggressive liberal racism of the academe, so I agreed. Plus, I really like Jane ♥. I wrote the following also knowing that it would serve as a good draft for the upcoming Sins Invalid project writing a Disability Justice statement, which will certainly be different and better after being worked through by the crew here.

However, I wanted to put it on this blog to continue my individual process of decolonization from ableist heteropatriarchal capitalism which tells me to keep a low profile lest I be hurt. So, with the deepest thanks and acknowledgements to Aurora Levins Morales and David Langstaff for their words intertwined with mine, and with gratitude to Aurora Levins Morales, Cara Page, Lisa Weiner-Mahfuz, Stacey Milbern, Kiyaan Abadani, Micah Bazant, Leroy Moore, seeley quest, Ernie Cath, David Langstaff, Nomy Lamm, Kay Ulanday Barrett, Laura Hershey, Leah Lakshmi Peipzna-Samaransinha, Natasha Simpson, Lateef McLeod and so many others who have all held fierce conversations and sleepy eyed dreams of what we building together....

I'd like to start off with a quote from Aurora Levins Morales' book :
"There is no neutral body from which our bodies deviate. Society has written deep into each strand of tissue of every living person on earth. What it writes into the heart muscles of five star generals is distinct from what it writes in the pancreatic tissue and intestinal tracts of Black single mothers in Detroit, of Mexicana migrants in Fresno, but no body stands outside the consequences of injustice and inequality...What our bodies require in order to thrive, is what the world requires. If there is a map to get there, it can be found in the atlas of our skin and bone and blood, in the tracks of neurotransmitters and antibodies."
There was phenomenal and historic work to develop the disability rights movement in the U.S., and it had many successes in advancing a philosophy of independent living and opening possibilities for people with disabilities through the establishment of civil rights for people with disabilities. Like other movements, the current disability rights movement includes advocacy organizations, service provision agencies, constituency led centers, membership based national organizations, as well as cultural and academic spaces.

And, like many movements, it is contextualized within its era of emergence and left us with "cliff-hangers": it is single issue identity based; its leadership has historically centered white experiences; its framework leaves out other forms of oppression and the ways in which privilege is leveraged at differing times and for various purposes; it centers people with mobility impairments, marginalizing other forms of impairment; and centers people who can achieve rights and access through a legal or rights-based framework. The political strategy of the disability rights movement relied on litigation and the establishment of a disability bureaucratic sector at the expense of developing a broad-based popular movement.

While a concrete and radical move forward toward justice, the disability rights movement simultaneously invisibilized the lives of peoples who lived at intersecting junctures of oppression - disabled people of color, immigrants with disabilities, queers with disabilities, trans and gender non-conforming people with disabilities, people with disabilities who are houseless, people with disabilities who are incarcerated, people with disabilities who have had their ancestral lands stolen, amongst others.

In response to this, in 2005, disabled activists of color, originally queer women of color incubated in progressive and radical movements that did not systematically address ableism - namely, myself, Mia Mingus, and Stacey Milbern, soon to be joined by Leroy Moore, Eli Clare and Sebastian Margaret - began discussing a "second wave" of disability rights and ultimately launched a framework we called Disability Justice.

Given the isolation enforced by ableism and classed boundaries, many of us have often found ourselves as agents of change from within our respective communities and isolated from in-person community with other disabled people of color or queer or gender non-conforming crips, finding "liberated zones" instead online. In many ways, Disability Justice is a nascent framework that some call a movement, still identifying the "we" - sometimes in fluid spaces and sometimes in each others' hoped and spoken words, touching each other through the echoes of those we mentor close by.

Given this early historical snapshot, I assert that Disability Justice work is largely done by individuals within their respective settings, with Sins Invalid, the NYC-based Disability Justice Collective, Seattle's Disability Justice Collective, and Vancouver's Disability Justice Collective being notable exceptions. Some voices may emphasize a particular component of the framework over another, as can be expected in early movement moments. However, what has been consistent is the leadership of disabled people of color and of queer and gender non-conforming disabled people.

Disability Justice activists, organizers, cultural workers understand that able-bodied supremacy has been formed in relation to intersecting systems of domination and exploitation. The histories of white supremacy and ableism are inextricably entwined, both forged in the crucible of colonial conquest and capitalist domination. We cannot comprehend ableism without grasping its interrelations with heteropatriarchy, white supremacy, colonialism and capitalism, each system co-creating an ideal bodymind built upon the exclusion and elimination of a subjugated "other" from whom profits and status are extracted. 500+ years of violence against black and brown communities includes 500+ years of bodies and minds deemed dangerous by being non-normative - again, not simply within able-bodied normativity, but within the violence of heteronormativity, white supremacy, gender normativity, within which our various bodies and multiple communities have been deemed "deviant", "unproductive", "invalid."

A Disability Justice framework understands that all bodies are unique and essential, that all bodies have strengths and needs that must be met. We know that we are powerful not despite the complexities of our bodies, but because of them. We understand that all bodies are caught in these bindings of ability, race, gender, sexuality, class, nation state and imperialism, and that we cannot separate them. These are the positions from where we struggle. We are in a global system that is incompatible with life. There is no way stop a single gear in motion - we must dismantle this machine.

Disability Justice holds a vision born out of collective struggle, drawing upon the legacies of cultural and spiritual resistance within a thousand underground paths, igniting small persistent fires of rebellion in everyday life. Disabled people of the global majority -- black and brown people -- share common ground confronting and subverting colonial powers in our struggle for life and justice. There has always been resistance to all forms of oppression, as we know through our bones that there have simultaneously been disabled people visioning a world where we flourish, that values and celebrates us in all our myriad beauty.

From my vantage point within Sins Invalid, where we incubate both the framework and practice of Disability Justice, this burgeoning framework has ten (10) principles, each offering new opportunities for movement builders:

Like the above principles, Disability Justice shares two additional principles with other justice-based movements - an Anti-Capitalist Politic and a Commitment to Cross Movement Organizing. We are anti-capitalist as the very nature of our mind/bodies resists conforming to a capitalist "normative" productive standard, with the actual construction of "disability" derived from the exploitation of the body in an economy that sees land and human as components of profit, deriding the integrity of our very real crip labor. Necessarily cross movement, Disability Justice shifts how social justice movements understand disability and contextualize ableism, lending itself toward a united front politic.

This is Disability Justice, an honoring of the longstanding legacies of resilience and resistance which are the inheritance of all of us whose bodies or minds will not conform. Disability Justice is a vision and practice of a yet-to-be, a map that we create with our ancestors and our great grandchildren onward, in the width and depth of our multiplicities and histories, a movement towards a world in which every body and mind is known as beautiful.

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Disability Justice - a working draft by Patty Berne - Sins Invalid

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In recent years, on websites and new media locales, on flyers and in informal conversations, I've witnessed people add the word "justice" onto virtually everything disability related -- from disability rights based services and access audits to disability scholarship -- while doing nothing

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My Body Doesn't Suppress Me, Society Does

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My Body Doesn't Suppress Me, Society Does

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My Body Doesn't Oppress Me, Society Does

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OUR VISION

Sins Invalid recognizes that we will be liberated as whole beings-as disabled, as queer, as brown, as black, as gender non-conforming, as trans, as women, as men, as non-binary gendered- we are far greater whole than partitioned. We recognize that our allies emerge from many communities and that demographic identity alone does not determine one's commitment to liberation.

Sins Invalid is committed to social and economic justice for all people with disabilities - in lockdowns, in shelters, on the streets, visibly disabled, invisibly disabled, sensory minority, environmentally injured, psychiatric survivors - moving beyond individual legal rights to collective human rights.

Our stories, imbedded in analysis, offer paths from identity politics to unity amongst all oppressed people, laying a foundation for a collective claim of liberation and beauty.

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Sins Invalid is a disability justice performance project that centers people of color, queers, nonbinary and trans people with disabilities.

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Our Mission:

Peer Support for Liberated Healing.

We build peer support collectives, lead political education, develop new knowledge and language around mental distress, organize and advocate for the liberation of our community members globally, and create innovative, peer-led, alternatives to our current mental health system.

Self-determination, opportunity, and equity for all Disabled, mad, neurodivergent, and mentally ill folks.
Learn More

Our Chapters

Meet the schools and universities embracing peer support.
Learn more.

$ REDISTRIBUTED IN MUTUAL AID
Since 2020, we have used our organization's access to resources to redistribute funds to multiply marginalized Disabled & Mad folks.

SCHOOLS SERVED NATIONWIDE
We've worked with over 50+ high schools and universities nationwide, building peer support resource systems embedded in the community.

PEERS SUPPORTED BY OUR PMHAs
Since 2013, we have worked with over 4K+ peers in high schools and on college campuses.

Project LETS sustains multiple programs centered on our core value of peer support.

HIGH SCHOOL & COLLEGE CHAPTERS

Intentional peer support, education, and organizing communities of students with lived experience of mental illness, trauma, Disability, and/or neurodivergence.

DISABILITY JUSTICE HEALING FUND

Financial support for the most directly affected individuals: queer and trans Black, Indigenous, people of color.

COMMUNITY-BASED PROGRAMS

Project LETS is building non-carceral, peer-led mental health systems through our C-PMHA program, community chapters, and our pilot mobile crisis response program.

PEER SUPPORT & ADVOCACY SERVICES

We offer free peer support advocacy services and rapid crisis response to individuals across the globe.

"

SEPTEMBER 2017

"The idea that someone from Project LETS might be up with a person since 4:00 in the morning and when the CAPS office opens at 8:30 a.m., they say, 'Let's go over there together.' From my perspective, that's awesome."
Dr. Will Meek / Read Full Article

Our Team

Everyone on our team has lived experience with mental illness, trauma, and/or neurodivergence. We are the people this stuff impacts most. And we design our programs with you (us) in mind.

Meet our team.

Start a conversation. Buy a t-shirt. Start your own club or college chapter. Bring a speaker to your school. Book us for a program or training. Volunteer for us. Share and spread the message of LETS in your life and community. See more opportunities below.

BRING US TO YOUR COMMUNITY
Project LETS facilitates workshops & trainings for: schools, organizations, and workplace environements.

Volunteer opportunities
Our organization has many opportunities available to volunteer your time and skills- from coders to therapists to school-youth!

Make a Donation
We could not exist without the generous community members who continue to sustain our work. Make a donation today.

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We build peer support collectives, lead political education, develop new knowledge and language around mental distress, organize and advocate for the liberation of our community members globally, and create innovative, peer-led, alternatives to our current mental health system. Meet the schools and universities embracing peer support. Learn more.

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The Disability & Intersectionality Summit (DIS) is a biennial national conference that centers the multiple oppressions that shape the lived experiences of disabled individuals, as told by disabled people, in a setting organized by disabled activists.

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By Hailey Hudson
The Disability Rights Movement established civil rights for people with disabilities, opening up opportunities for them to participate more fully in society.

This movement gathered speed in the 1960's and led to the Americans with Disabilities Act (ADA) being passed in 1990. The United Kingdom would pass a similar legislation: the Disability Discrimination Act (DDA) in 1995. Many other countries across the globe followed suit with similar legislation throughout the 1990's.

But the Disability Rights Movement fell short of examining how aspects such as the intersections of race, gender, class and sexuality play a role in the oppression of people with disabilities. That's where Disability Justice comes into play.

What is Disability Justice?

Disability Justice is a term that was coined in 2005 by Sins Invalid, a collective of disabled queer women of color, including Patty Berne, Mia Mingus, and the late Stacey Milbern. Disability Justice builds on the disability rights movement, taking a more comprehensive approach to help secure rights for disabled people by recognizing the intersectionality of disabled people who belong to additional marginalized communities.

The Disability Justice framework asserts that we must include the experiences of multiply marginalized people with disabilities such as:

People of color

Immigrants

LGBTQIA+ People

Homeless people

Incarcerated people

People who have had their ancestral lands stolen

Disability Justice looks at all of these issues, recognizing how diverse systems of oppression interact and reinforce each other. Because of this broader focus, the Disability Justice movement is the most comprehensive way to create lasting change for people with disabilities and who are multiply marginalized.

Disability Justice has 10 main principles to examine the inclusion of people who are multiply marginalized, which Patty Berne outlined in a 2015 blog post:

1. Intersectionality

Intersectionality is a term founded by legal scholar Kimberlé Crenshaw in 1989 to address how Black women exist at the intersections of racism and sexism. Similarly, the Disability Justice framework applies this concept by explaining that disabled people each have a different background and experience regarding race, class, sexuality, age, immigration status, and other issues. Recognizing intersectionality means recognizing that abhorrent ideologies such as ableism, racism, sexism, xenophobia, homophobia, and transphobia often operate together and empower one another.

2. Leadership of Those Most Impacted

Disability Justice makes a point to center the leadership of the people most impacted by ableism rather than scholars and academics, or others who are disabled but still benefit from other types of oppression. The Disability Rights Movement has been criticized for prioritizing the voices of white disabled people, who have often continued to reinforce the racism and oppression that Black disabled people and people of color experience. Therefore, it is imperative to ensure that leadership, power, and opportunities are given to people most negatively impacted by the full spectrum of ableism to more effectively combat those issues.

3. Anti-Capitalist Politics

This principle essentially says that our worth as a person does not depend on how much we can produce. Disability Justice pushes back against the level of productivity a capitalist culture expects, as well as the systemic poverty that people with disabilities are forced into if they are unable to work. All people deserve to have their needs met, regardless of their ability to produce.

4. Cross-Movement Solidarity

Disability Justice combines with other movements seeking liberation - such as racial justice, environmental justice, anti-police terror, and others. Because every demographic of people includes people with disabilities, people with disabilities will not be liberated without the success of each of these movements. This effort helps disabled people to become more united and comprehensive in our activism.

5. Recognizing Wholeness

The Disability Justice movement holds that disabled people are whole people. They are not less than because of their disability. Disabled people have rich inner lives and valuable experiences.

6. Sustainability

Another vital principle of the Disability Justice movement is sustainability. Disabled activists and advocates need to be in tune with their bodies to pace themselves long-term and continue steadily working toward justice over time without burning out. Additionally, the sustainability of the movement is dependent on the community, and cannot be pushed forward by individuals alone.

7. Commitment to Cross-Disability Solidarity

Disability Justice focuses on all disabled people, including those who are often left out. Anyone who experiences ableism is included, whether they are chronically ill, neurodiverse, Deaf, Blind, mentally, intellectually, developmentally disabled, physically disabled, or have any other disability.

8. Interdependence

Interdependence allows us to work side-by-side, creating a stronger community as we work to liberate all oppressed individuals. Instead of solely promoting independence, which was a focus of the Disability Rights and Independent Living movement, interdependence acknowledges that none of us can thrive without support. This principle centers around building a sense of community among disabled people and organizing to achieve liberation.

9. Collective Access

The collective access principle explains that Disability Justice creates methods of doing things outside of nondisabled, neurotypical norms. In the Disability Justice movement, access needs are welcomed, respected, and acknowledged.

10. Collective Liberation

Collective liberation explains that disabled people move together as people with "mixed abilities, multiracial, multi-gendered, mixed class, across the sexual spectrum, with a vision that leaves no one behind." This principle acknowledges the decades-long work of those who have previously fought for liberation while also acknowledging what is yet to be. Collective liberation means envisioning a world that can be created when disabled people with various backgrounds and lived experiences come together to enact a movement of change.

Moving Forward with Disability Justice

When we focus on the principles of Disability Justice, we prioritize the connections between ableism and other systems of oppression. Disability Justice recognizes that disability is not monolithic - ableism looks different for people with various disabilities as well as people of different races, classes, and genders. Thus, Disability Justice is the most potent and effective way to secure the liberation of disabled and multiply marginalized people.

Catch up on our latest blog posts here!

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Moving From Disability Rights to Disability Justice - World Institute on Disability

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By Hailey Hudson The Disability Rights Movement established civil rights for people with disabilities, opening up opportunities for them to participate more fully in society. This movement gathered speed in the 1960's and led to the Americans with Disabilities Act...

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Disability Visability (Borrow in the Cultural Center!)

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Disability Visability (Borrow in the Cultural Center!)

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Disability Visibility: First-Person Stories from the Twenty-first Century is a collective anthology of short essays, interview transcripts, articles, blog posts, creative prose and more edited by Alice Wong to mark the thirtieth anniversary of the Americans With Disabilities Act (ADA). What unfolds within its pages is nothing short of a celebration of the universal and total nature of the disabled experience; it is raw and it is painful, but it is also beautiful and inspiring. Once you start, it is hard to put down.

Split across four sections - Being, Becoming, Doing and Connecting - each contributor leaves a piece of themselves within these pages, their voices distinct and experiences vivid whether they be expressed through ten pages or just three. This diverse range of perspectives, and mediums through which they're shared, makes this anthology a true demonstration of what intersectionality really means without even having to use it as a buzzword. It succeeds absolutely in what it sets out to do; to demonstrate the undeniable value of disabled lives and experiences - particularly those lives and experiences that are also shaped by colour, gender and/or sexuality - and why not only the world will always have us, but why the world needs us. Every essay is accessible - and clearly labelled with content warnings where difficult subjects are discussed - and is worth reading at least once, but I can see myself returning to this anthology to re-read it many times in the coming years.

Whether you're disabled or no, I think this is a critical and necessary read for anyone who is passionate about social justice, or who wants to gain a more intimate understanding of themselves and the human condition. The wisdom and rawness within these pages is something we can all grow from, and may we carry them forward into our communities and from humble seeds grow into mighty oaks, intertwined in interdependence from roots to branches. In my own journey as a young disabled man, I feel as if I'm just starting to reach the canopy, in no small part thanks to the richness of this book.

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Disability Visibility: First-Person Stories from the Twenty-First Century

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Disability Visibility: First-Person Stories from the Twenty-First Century [Wong, Alice] on Amazon.com. *FREE* shipping on qualifying offers. Disability Visibility: First-Person Stories from the Twenty-First Century

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From the disability rights advocate and creator of the #DisabledAndCute viral campaign, a thoughtful, inspiring, and charming collection of essays exploring what it means to be black and disabled in a mostly able-bodied white America. , Brown gives a contemporary and relatable voice to the disabled-so often portrayed as mute, weak, or isolated. With clear, fresh, and light-hearted prose, these essays explore everything from her relationship with her able-bodied identical twin (called "the pretty one" by friends) to navigating romance; her deep affinity for all things pop culture-and her disappointment with the media's distorted view of disability; and her declaration of self-love with the viral hashtag #DisabledAndCute.

Keah Brown loves herself, but that hadn't always been the case. Born with cerebral palsy, her greatest desire used to be normalcy and refuge from the steady stream of self-hate society strengthened inside her. But after years of introspection and reaching out to others in her community, she has reclaimed herself and changed her perspective.

By "smashing stigmas, empowering her community, and celebrating herself" (
In The Pretty One Teen Vogue ), Brown and The Pretty One aims to expand the conversation about disability and inspire self-love for people of all backgrounds.

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The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me

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Amazon.com: The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me: 9781982100544: Brown, Keah: Books

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People are complex and multi-faceted, with many interwoven attributes making up their identity. Disability is just one part of a person's identity, that may shape but not define them.

The term intersectionality first came about to describe the dialogue between feminism and women of colour, highlighting the different barriers women face dependent on the colour of their skin. This movement called for better inclusion and understanding of the different issues, such as racism, women of colour face in seeking gender equality.

Since then, the term intersectionality has broadened to include all protected characteristics, such as class, ethnicity, sexual orientation, age, religion, disability and gender. It's the idea that these layers do not exist separately from each other but intersect to form a person's identity, and can magnify the discrimination and marginalisation they might experience. To fully understand to what extent, it's crucial to look at the whole picture of someone's identity.

To illustrate, Eve, a black wheelchair user who is also a lesbian, transgender and Muslim will have a different lived experience to Sarah who is a white, heterosexual woman who uses a wheelchair. There's every possibility that Eve will have to navigate misogyny, racism, Islamaphobia, homophobia and ableism on any given day. Different parts of her identity might be focussed on dependent on the audience, which means she might experience discrimination for one or many aspects of her identity either simultaneously or in isolation. This oppression is multi-layered, deeply complex and no doubt very tiring...Jay and Kym AKA 'The Triple Cripples' address this issue beautifully (watch below):

Intersectionality and Disability

Language is central to disability politics; negative language can reinforce oppression and discrimination. Using positive language and the social model is vital to achieving an intersectional approach in building enabling and inclusive support services for disabled people. The social model is founded on the idea that our environment and societal barriers disable us, not a fault with the person. Seeing the whole person beyond their disabilitymakes a huge difference in understanding disclosure rates, prevalence rates and engagement with services.

For example, according to a study conducted by the NHS, black British women are the most likely to experience poor mental health at 29.3%, but the least likely to seek support at 6.2%. The most pronounced inequalities in uptake of support relate to age, sex and ethnic group. People with common mental health issues who are Black, Asian, non-British White, or of mixed or other ethnicity are less likely to obtain treatment than those in the white British group. This raises many questions around culturally informed attitudes and biases relating to disability. Also, whether health care services are shaped to cater to a broad range of people or if we're using exclusionary euro-centric models that don't translate to other understandings of health.

Recognising when an Intersectional Approach is Needed

ALWAYS! Evaluating whether a system or service is fit for purpose can be complex, but it helps to start by asking questions like:

Which communities are served and which aren't? Why?

Who gets to participate and who doesn't? Why?

Who has access to resources and support and who doesn't? Why?

Who's voices get heard and who's don't? Why?

This will help highlight points of exclusion and guide a more inclusive, intersectional approach.

Lived Experience and Representation

At Diversity and Ability (DnA) it's our view that support is only effective if it takes into account the reality of that person's lived experience. For example, we would be mindful of how someone's cultural background might feed into their perceptions of disability or mental health and what kind of treatment systems are familiar or acceptable to them.

DnA is a disabled-led organisation, with a diverse team who reflect the lived experiences of the people we work with. Lack of representation can affect emotional well-being, as well as societal outcomes in health, education, employment and relationships. Representation is important in helping people feel they belong. Delivering peer-to-peer support with inherent empathy and understanding can create solutions that are genuinely relevant and enabling.

Inclusive Support

As well as tailored one-to-one support, many of DnA's services are focussed more broadly around inclusion. We provide support that is on some level useful to a wide range of people, without singling out particular communities.

Positively impact on widening participation goals

Boost productivity, wellbeing and mental health

Increase attainment & retention

Create a positive culture shift towards increased acceptance of diverse learning styles, resulting in improved accessibility and inclusion

For example, in universities, we provide group 'inclusive technology' training sessions that are open to anyone who would like to learn new study skills and how technology may assist them in their studies. Many technologies developed to support people with learning differences actually benefit a broad cross-section of people, with or without diagnosed learning differences. This change in narrative opens up support avenues for students who may not have defined themselves as disabled due to culturally reinforced shame, class-based access, eligibility rules around nationality etc. Initiatives like these have the power to:

Chat to us at hello@diversityandability.com

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People are complex and multi-faceted, with many interwoven attributes making up their identity. Disability is just one part of a person's identity, that may shape but not define them. The term...

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Disability Horizons magazine is an online disability lifestyle publication that aims to give disabled people a voice. Founded by two disabled guys in 2011, Disability Horizons publishes articles on a wide variety of topics, all to support the aim of a world where disabled people live exactly as they choose to.

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"Creating, sharing, and amplifying disability media and culture"

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Skip to Content

Access Living is a center of service, advocacy, and social change for people with disabilities led and run by people with disabilities.

Eviction & Housing Resource List

As the eviction moratorium comes to a close this month, many people are facing the loss of their housing. Here is a list of low cost or free resources that may help you navigate or prevent eviction and housing loss.

Featured Stories

Access Living will continue to add to and maintain a list of general and disability-specific COVID-19 resources and information.

Access Living's award-winning youth mentoring program is called the Disability Justice Mentoring Collective (DJMC), and it connects young people who have disabilities with adult mentors.

In partnership with Access Living's Arts and Culture Project, the Disability Culture Activism Lab provides teaching and hands-on learning through disability justice-a framework that examines disability in connection to other forms of oppressions and identities.

Our Mission and Vision

We ignite disability power and pride, provide critical services, and break down systemic barriers to create a stronger, more inclusive society.

We envision a world free from barriers and discrimination - where disability is a respected and natural part of the human experience and people with disabilities are included and valued.

News

If you live in Illinois, we need your help today to fight against Source of Income (SOI) discrimination in housing,...

On Wednesday, September 15, 2021, Access Living Transportation Policy Analyst Laura Saltzman, spoke on behalf of the Transportation Equity Network...

Dear Access Living Friends and Allies, Today's action alert comes from NCIL concerning the money promised to Home and Community...

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Skip to Content Access Living is a center of service, advocacy, and social change for people with disabilities led and run by people with disabilities. As the eviction moratorium comes to a close this month, many people are facing the loss of their housing.

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National Center for College Students with Disabilities

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National Center for College Students with Disabilities

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Welcome!

The NCCSD is the only federally-funded national center in the U.S. with information and resources for future and current college students with disabilities, including those in part-time programs and graduate students. We work with students, their families, teachers, professors, and anyone with questions about disability and higher education. We're here for you.

If you have difficulty accessing information on the NCCSD website, please contact us at nccsd@ahead.org

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The NCCSD is the only federally-funded national center in the U.S. with information and resources for future and current college students with disabilities, including those in part-time programs and graduate students. We work with students, their families, teachers, professors, and anyone with questions about disability and higher education. We're here for you.

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The National Disability Rights Network works in Washington, DC on behalf of the Protection and Advocacy Systems (P&As) and Client Assistance Programs (CAPs), the nation's largest providers of legal advocacy services for people with disabilities.

NDRN promotes the network's capacity, ensures that P&As/CAPs remain strong and effective by providing training and technical assistance, and advocates for laws protecting the civil and human rights of all people with disabilities.

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National Disability Rights Network - P&A - CAP | NDRN

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NDRN promotes the network's capacity, ensures that P&As/CAPs remain strong and effective by providing training and fighting for people with disabilities.