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

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In time for the thirtieth anniversary of the Americans with Disabilities Act, activist Alice Wong brings together a collection of personal essays by disabled people that celebrates and documents disability culture in the now. Review by Nila Gupta

Headshot of author

Alice Wong

Trying to summarise a collection like Alice Wong’s Disability Visibility Is daunting. The scope of the collection is epic, there are a vast array of positions, impairments, and types of voice. I’m going to try instead to give you a flavour of what waits for you in this impressive series of personal accounts.

I often struggle with reading, so I’m going to follow a great suggestion from one of my Brown Queer Crip fam. If you only have scope/access to read one thing, read Alice Wong’s introduction. It offers the reader an overview whilst providing a powerful manifesto for radical disability liberation – a theme that links this and Wong’s previous collection, ‘Resistance and Hope’.

“To me, disability is not a monolith, nor is it a clear-cut binary of disabled and nondisabled. Disability is mutable and ever- evolving. Disability is both apparent and nonapparent. Disability is pain, struggle, brilliance, abundance, and joy. Disability is socio-political, cultural, and biological. Being visible and claiming a disabled identity brings risks as much as it brings pride.”

“As a marginalized person, I don’t feel it’s enough to just keep saying, “Hey, pay attention to us, we’re here! We exist! We’re just as human as you!” I want things to improve even while grappling with this impulse, with the tension between “subject” and “audience.” I want to center the wisdom of disabled people and welcome others in, rather than asking for permission or acknowledgment.”

book cover

Disability Visibility

Wong opens with a strong statement of intent but does the collection deliver? ‘Disability Visibility’ is the first, hopefully not the last, on-paper offshoot of Wong’s Disability Visibility Project. The DVP began as a short-term, one-off archive of our lived experiences, but has grown way beyond that into an ongoing living testament to the state of Disabled people’s lives.

Themes tackled in this collection include race, colonialism, gender, climate catastrophe, organising, politics and accounts of multiple ‘impairments’. Many of the best pieces here wrestle with the whole concept of ‘impairment’ and who gets to decide. There’s no ‘crip-spiration’ here – the pieces are angry, sad, passionate, raw and above all real. I recognise so much of what I read, and at a time of heightened isolation, the visceral sense of connection is surprising and welcome.

I also learnt a lot: eg regarding historical figures of the US disability justice movement. Eugene Grant’s deeply-researched account of the life of Benjamin Lay opens up a fascinating slice of early US disability activism:

“On another occasion, he kidnapped the child of slaveholders temporarily, to show them how Africans felt when their relatives were sold overseas.[6] The most notable act occurred in Burlington, New Jersey, at the 1738 Philadelphia Yearly Meeting of Quakers. Dressed as a soldier, he concluded a diatribe against slavery, quoting the Bible saying that all men should be equal under God, by plunging a sword into a Bible containing a bladder of blood-red pokeberry juice, which spattered over those nearby.”

A dominant theme of this collection focusses on Disabled peoples’ relationship to death. Several of the most powerful pieces left me gasping; I needed to take a lot of breaks. I was also really glad to see many pieces dealing with the sacred, with what being a disabled religious person means. There are pieces by people who are no longer with us in this world. Living in a world of the Uprising /Black Lives Matter and Covid hammers this home. A profound demand for the fundamental value of Black lives is shaking the world, and Covid has meant many of us confronting our mortality (and disposeability) more then usual:

“People sometimes assume ancestorship is reserved for those who are biologically related, but a queered or cripped understanding of ancestorship holds that our deepest relationships are with people we choose to be connected to and honour day after day.

Ancestorship, like love, is expansive and breaks man-made boundaries cast upon it, like the nuclear family model or artificial nation- state borders. […]

I believe that our ancestors laugh, cry, hurt, rage, celebrate with us. Most important, I believe they learn as we are learning, just as we learn from them. We grow knowledge and movements with them. We crip futurism with them”

Talia A Lewis’ generosity in sharing her obituary for her life partner, Ki’tay D. Davidson moved me to tears:

“Thank you, Ki’tay, for consciously sharing your love with us.
Thank you, Ki’tay, for your countless quiet sacrifices in the name of love, liberation, humanity.
I wholeheartedly recognize and am forever humbled in knowing that you are the mightiest of all our miracles.
May we ever uplift, share, and act out your truth: Love Wins.”

There’s a lot of emotion and passion in this collection, and it touched off many emotions leaving me with a deep and generative anger at what ableds called disability – small d. Ie that which ableds locate in our ‘failed’ minds and bodies – pathologising, individualising and blame. What this collection blazes forward is Disability with capital D; Disabled people as a material category as per social model of disability.

I came away powerfully impressed by the breadth of knowledge about how our bodies and minds flourish when we do the hard work of throwing away all notions of our individual failure. The chapter that will stay with me longest, and taught me most, is probably Jamison Hill’s ‘Love Means Never Having to Say … Anything:

“Our experiences differ. Shannon can briefly get up to use the toilet, bathe, and, on a good day, make herself a meal. I, on the other hand, have to do everything in bed—brush my teeth, bathe, and use the ‘bathroom’—a plastic bag for bowel movements and, for urinating, a dubious-looking plastic container attached to a tube feeding into a bucket on the floor. These are not sexy things but are part of life—my life and ours together.”

“I had never thought about it like that — the possibility of two sick people being in a successful relationship together. I have always assumed that one person in the couple would need to be healthy. Two sick people can’t take care of each other.

But Shannon and I take care of each other in ways I never thought possible. I may not be able to make a meal for her, but I can have takeout delivered. And she may not be able to be my caregiver, but she can post an ad looking for one. We have done these things and many others for each other, from opposite ends of North America. ”

This piece made me deeply question some internalised disablism/my assumptions about ‘being too mad and sick to love’.  Jamison and ??? , I thank you for sharing the depth of what Mia Mingus calls ‘Access Intimacy’. I may never find this (and to do so I have to be open to looking) – but getting to ‘spend some time’ in your relationship is a gift I will treasure.

This collection is angry, loving, and profoundly futurist: it argues that our future begins now, began with our ancestors and is our battle to continue. I came to this collection feeling broken and useless, I leave feeling fired-up and ready to fight. I want to leave you with some words from Ricardo T Thornton sr: who grew up in an institution, fought to be released, became an advocate and succeeded in shutting down the same institution:

“We can’t go back. We can’t go back to a time when people are moved against their will to places where they have no opportunities to learn, grow, and contribute. We need to keep moving forward. People invested in me and my wife and brother. When we were in the institution, we didn’t have a voice. We were thought to be incompetent, so no one took the time to teach us things. But people can accomplish great things with support. Having an intellectual disability doesn’t limit what you can contribute. Being put in institutions limits what people can do and guarantees that people will be dependent for the rest of their lives”

Read this collection, and keep loving and fighting. Black Disabled Lives Matter.


You can check out Alice Wong’s Disability Visibility Project website for more information about the book, online events plus a free discussion guide & plain language summary.