| Title | : | Disability Visibility: First-Person Stories from the Twenty-first Century |
| Author | : | |
| Rating | : | |
| ISBN | : | 1984899422 |
| ISBN-10 | : | 9781984899422 |
| Language | : | English |
| Format Type | : | Paperback |
| Number of Pages | : | 309 |
| Publication | : | First published June 30, 2020 |
From Harriet McBryde Johnson’s account of her debate with Peter Singer over her own personhood to original pieces by authors like Keah Brown and Haben Girma; from blog posts, manifestos, and eulogies to Congressional testimonies, and beyond: this anthology gives a glimpse into the rich complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own understandings. It celebrates and documents disability culture in the now. It looks to the future and the past with hope and love.
Disability Visibility: First-Person Stories from the Twenty-first Century Reviews
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2/9/20
This was just a great piece of literature! Incredibly insightful, heartfelt -- I learned so much from this and I'm thankful that this exists. Will definitely be discussing this on my
Youtube channel in the future :)
1/7/20
I have been looking for exactly this kind of book and it came in the mail today -- so so happy to have it!! :D
You can find me on
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The Storygraph -
not going to review this one beyond saying - a must read.
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In a world where the disabled voice is often viewed through the lens of what disability rights activist Stella Young coined as "inspiration porn" or with the rah-rah sympathies of the latest Lifetime Channel movie, a book like "Disability Visibility: First-Person Stories from the Twenty-First Century" is an act of revolutionary love and claiming of space.
There is no "Chicken Soup for the Soul" to be found here. In its place, you find #CripLit at its finest - bold and brash, heartfelt and passionate, and incredibly well-informed essays and reflections on the vast diversity of the disability experience as told by a relatively small smattering of the leading disability voices in the 21st century.
Trust me, there are more. Lots more. However, "Disability Visibility" editor Alice Wong has chosen her subjects well in representing the remarkable love and chaos of the disability experience. The writers themselves, representing a broad spectrum of disabilities both visible and invisible, have written with tremendous authenticity, remarkable transparency, and a vulnerability that frequently had me in tears throughout this rewarding collection.
Being released just in time for the 30th anniversary of the Americans with Disabilities Act (ADA), "Disability Visibility" doesn't mute the harshness of the disability experience. Indeed, many of the essays in the collection begin with content warnings regarding the subject matter about to be discussed - "Disability Visibility" is relentless and fierce in its commitment to an honest portrayal of the disability experience.
It begins with Wong's own introduction to the collection, an introduction birthed out of Wong's own life experiences and her own work with the Disability Visibility Project, a collaboration with StoryCorps, that serves as the framework for this collection.
It would be unjust to describe the essays in "Disability Visibility" with any detail, though some highlights include Harriet McBryde Johnson's riveting and squirm-inducing account of her debate with Princeton University philosopher Peter Singer, an animal rights activist who doesn't possess the same kind of regard for the lives of persons with disabilities. Upcoming authors Keah Brown and Haben Girma share involving original pieces, while some of my own favorites included s.e. smith's essays on crip space, Jamison Hill's poignant and beautiful "Love Means Never Having to Say...Anything," Leah Lakshmi Piepzna-Samarasinha's "Still Dreaming Wild Disability Justice Dreams at the End of the World," the intelligent and angry Harriet Tubman Collective's "Disability Solidarity," Britney Wilson's disturbing essay on NYC's Paratransit program, and Mari Ramsawakh's "Incontinence Is a Public Health Issue And We Need To Talk About It," the latter being an essay that truly connected with pieces of my own disability experience as a 54-year-old writer, creator, and film journalist who is also a paraplegic/double amputee with spina bifida.
There were more essays that I loved, truly loved. There were essays that flew over my head including Jillian Weise's "Common Cyborg." I felt like I wanted to find Wong or Weise on social media and say "Explain this to me, because I have the feeling it's brilliant and I just don't quite get it."
The truth is that I'd be hard-pressed to cite a single weak essay. These essays are revolutionary proclamations of the incredible richness and complexity of the disability experience. While there is much pain and anger within the pages of "Disability Visibility," it is also filled with much love and hope and wonder. As Neil Marcus so beautifully stated "Disability is not a brave struggle or "courage in the face of adversity." Disability is an art. It's an ingenious way to live."
That truth, that disability is an ingenious way to live, is brought to life again and again in this groundbreaking collection of first-person stories from the twenty-first century that challenge and confront, claim space and serve as a literary companion of sorts. There's so many enlightening truths to be explored here, truths that will be easily embraced and understood by those with disabilities and their allies yet truths that also invite readers to challenge their own assumptions and understandings of the disability experience and disability culture.
"Disability Visibility" is a book that illuminates the disability experience with equal parts intelligence and authentic emotional resonance. It's a book that is, at times, difficult to read yet a book that is necessary to read. It's a book I will undoubtedly revisit time and again, yet it's also a book that required I pace myself due to its stark honesty and and the often trauma-tinged stories of individual disability experiences. It's a book that captures it all and for that I am grateful and for that I highly recommend it. -
Absolutely stellar.
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I was expecting a collection of essays with people talking about their experiences living with disability and how it's impacted their lives. I really wanted to be able to take this and give it to people and be like, "This is what's it's like. Read this if you want to understand." And there are a handful of good essays in here, such as "Imposter Syndrome and Parenting with a Disability" by Jessica Slice. "The Isolation of being Deaf in Prison" is a really powerful essay about how poorly one disabled man was treated in prison. Whenever someone just sticks to telling their story, it's good. I also really liked "The Anti-Abortion Bill You Aren't Hearing About" which is a really clear articulate argument about why disability advocates should rethink their stance on abortion. I would have welcomed more debate style essays like that.
But lot of this writing (especially in the first half of the book) is just inarticulate anger that's directed at the reader. A lot of it is vague and chaotic and, I hate to say, cringy.
Like this isn't a book I would give to someone to help them understand, and I wouldn't give it to someone to help them feel less alone. Even though there are a few solid essays, there are more bad ones.
I feel like this book tries to have lots of diversity, and there's a lot of focus on having authors who are POC, or queer, or trans, or of different religions. Which isn't in itself a problem of course, but there isn't as much diversity of disabled experience. Like why aren't there essays on what it's like to live with an invisible illness? Why aren't there essays on how different disabled people have different needs and disability isn't a monolith? Why aren't there super specific essays on issues that are only mentioned in passing in some of these essays? Like disabled people being seen as undeserving of life if they're not productive enough, or how hard it is to deal with doctors, or what it's like to relate to able bodied people like friends, families, partners. There are so many conversations to be had and this book doesn't have them. I think there's only one essay about mental illness. That doesn't seem like enough.
I think I assumed when I saw the title that this book was about disabled experiences, and visibility through story telling, but I think it's more about...being loud and proud about being disabled? Maybe? I don't even know. I think this book is trying to be too many things at once so it lacks focus and kind of ends up being about nothing. It's even divided into four arbitrary sections: Being, Becoming, Doing, and Connecting. I think there could have been way clearer sections like: Political, Personal, Activism, Working, and Creating like...really tie the essays together by what they're about.
So yeah. I would skip this. -
Wow, what a force of a book.
For many who read Alice Wong's Disability Visibility, this anthology will serve as an important jumping-off point into disability discourse as opposed to a final or concluding work. If you go in knowing that it'll leave you with an infinite number of experiences to read more about elsewhere, you'll get a lot out of this book.
As with any anthology, some essays are a little more solidly constructed than others, but every single one touches on an important part of what it means to live with a disability in a modern world. And as one essay touches on, ableist standards of what's "complete" in publishing often keep disabled writers and editors from sharing their truths.
In terms of notes for reading, I recommend taking on a few essays at time to really let them sink in, especially because they run the gamut in terms of subject matter and structure. I also commend Wong for including an incredibly thorough list of resources at the end for those who want to learn more about the disability community as well as key conversations and debates.
Another shout out goes to Wong for including specific content warnings at the top of every essay, making it easy for people to decide what they're okay reading about or maybe need to skip. -
A fabulous dive into the experiences and perspectives of an oft-marginalized group. As someone shamefully ignorant about disability and its many facets, my eyes were opened. The essays bring together a diverse group of voices. Many are in agreeance with each other, but others take opposing perspectives. An argument can be made that even greater diversity would give the collection better scope, but that just means there's plenty of room left for a volume two.
Ultimately it achieves precisely what it sets out to do: bring visibility to disability. Considering disability is a fact of life, found on the entire globe, and can/will occur at any point in the human experience, it really is remarkable how taboo it can be to talk about. Why don't we talk about this all the time?
Any book that gets me thinking, breaks down barriers, and offers fresh perspective in a winner in my opinion, and this one hit all the marks. Highly recommended! -
There are highs and lows in this collection, but overall, this is an incredibly wide ranging group of essays exploring the lived experiences of disabled people. While the writing itself is not likely to stick with me too much, the topics and stories covered certainly will, and I highly recommend this as a consciousness raising book for those seeking to work through internalized ableism (which is basically impossible for us all not to have)
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۳/۵ ستاره
خواندن این مجموعه نوشتار مثل این میمونه که در جمع افرادی که با معلولیتهای مختلف زندگی میکنند بشینی و از مشکلات، دغدغهها، آرزوها و پیروزیهاشون بشنوی. وقتی که بحث حقوق و مسائل جامعهی معلول مطرح میشه، اکثر ما که بدون این مشکلات زندگی میکنیم شاید فقط بتونیم به پایهایترینِ این مشکلات فکر کنیم. درمان، آموزش، دسترسی و حمایت مالی
این نوشتارهای شخصی برای افرادی که در این زمینه مطالعهی زیادی ندارند سه جنبه داره
یک: آشنا شدن با گسترهی معلولیت
معلولیت فقط نابینایی، ناشنوایی و معلولیت حرکتی نیست. بیمارانی که با سرطان و ایدز زندگی میکن��د یا از مشکلات خاصی مثل عدم کنترل روی ادرار رنج میبرند هم معلول به حساب میان و مسائل خاص خودشون رو دارند. برام جالب بود که در این کتاب از ترنسجندرها، کوییرها و اِیسکشوالها هم صحبت شده
دو: درک اینکه اصلاً حقوق و مشکلات افراد معلول چه هست؟
صداهای این کتاب از مشکلاتی مثل دسترسی به البسهی مناسب، نگاه جامعه از نظر زیبایی و جذابیت به افراد معلول و مشکلاتی که والدین برای فرزندپروری دارند شروع میکنند و به معضلات پایهای میرسند. سواستفاده جنسی، اختهکردن و نرخ بالای کشتهشدن به اشتباه توسط پلیس
سه: مشکل جوامع پیشرفته، آرزوی جامعهی ما
در بعضی از مقالهها نویسندهها از نقطه ضعفهای سیستمها و امکانات کنونی میگن. مثلاً نویسندهای از مشکلات سیستم مخصوص جابجایی معلولان در نیویورک میگه و دیگری از قیمت نجومی تجهیزات کمکی پیشرفته صحبت میکنه. مشکلاتی که در عین اینکه باید در موردشون صحبت بشه، سالها با دغدغههای جامعهما فاصله دارند و این دردناکه
مورد سه دقیقاً مسئلهای بود که باعث شد من با کتاب به حدی که باید ارتباط برقرار نکنم. این اصلا به معنی بد بودن کتاب یا غیر مهم بودنش نیست. کاملاً برعکس. اینجور کتابها درهای جدیدی رو باز میکنند که قبل از خواندنشون حتی وجود هم نداشتند. ولی الان این موضوعات برای من خیلی خام هستند و بیشتر باید بخونم تا درکشون کنم
پینوشت
چون در مورد این مسائل به انگلیسی میخونم، کلمات مناسب برای استفاده در فارسی رو نمیدونم. با اطلاعات محدودم میدونم که استفاده از کلماتی مثل توانخواه یا روشندل برخلاف چیزی که به نظر میاد جالب نیست. برای همین در ریویو هم از کلمهی معلولیت استفاده کردم. اگر بیشتر در این مورد میدونید، لطفاً راهنمایی کنید
M's Books :کتاب و صوتیش
۱۴۰۱/۲/۱۶ -
5/5stars
Wonderful. Perfect. A great book for people unfamiliar with disability literature or theory as this is very accessible and easy to read as all the essays are very short and narrative-based.
My favorites included:
- Unspeakable Conversations by Harriet McBryde Johnson
- If you can't fast, Give by Maysoon Zayid
- The Isolation of Being Deaf in Prison originally told by Jeremy Woody
- Guide Dogs Don't Lead Blind People. We Wander as One. by Haben Girma
- Nurturing Black Disabled Joy by Keah Brown
- Why My Novel is Dedicated to my Disabled Friend Maddy by A. H. Reaume
- Lost Cause by Reyma McCoy McDeid
- Disability Solidarity by Harriet Tubman Collective (a GREAT essay for people who are interested in learning more about the BLM movement and Black Lives in America as this touches on disabled/Deaf Black people and how they are not as represented in the BLM movement and what we can do to correct that!!)
- Time's Up For Me, Too by Karolyn Gehrig -
I can't express my love and joy at this book through words! My disabled self is LIVING! So many emotions I had while reading this book! Anger, at ableism and injustice, seeing that i'm not alone and relating to others on things that most just don't get, and joy at all the disabled joy! This is a book I HIGHLY recommend to EVERYONE! If you are disabled you'll find stuff to relate to and to love in this book. If you aren't I truly think it'll help you understand disabled people, disability justice and the ableism we face more.
These essays (37 if I counted right) feature a huge diversity of disabled people! Queer, Trans, People of Color, physical and mental disabilities, all very much featured in here! It's accessible and so very much needed. If I could ask everyone to read just ONE book, it'd be this one! No question about it!
Some of my favorite essays include:
"I'm tired of chasing a cure" by Liz Moore, which I found here
https://liminalnest.wordpress.com/201...
"Why my novel is dedicated to my disabled friend Maddy" by A.H. Reaume, which I found here
http://open-book.ca/Columnists/Interd...
"The antiabortion bill you aren't hearing about" by Rebecca Cokley, which I found here
https://rewirenewsgroup.com/article/2...
"Unspeakable Conversations" by Harriet McBryde Johnson, which I found here
https://www.nytimes.com/2003/02/16/ma...
as well as (I didn't look up all of them)
"For Ki'tay D. Davidson, who loves us" b Talila A. Lewis
"Radical Visibility: A disabled queer clothing reform movement manifesto" by Sky Cubacub (website here AKA the most beautiful thing i've ever seen after reading this essay!)
http://rebirthgarments.com/
"Incontinence is a public health issue- and we need to talk about it" by Mari Ramsawakh
"Six Ways of looking at Crip time" by Ellen Samuels
Those are just SOME of them and truly I loved this entire book! Every single essay. It gave me stuff to think on, stuff to relate to that no one I know in RL understands, learned things, joy. So much. Highly recommend this book❤️.
https://linktr.ee/Wickedjr -
So many incredible disabled voices, this was a phenomenal read
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A really fantastic, powerful and enlightening read. I would highly recommend this.
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I appreciated the essays on their own. Glimpses into the vast world of disability. A reminder of my own ableism and ghat disabilities are not one size fits all. I didn’t think the collection had any flow and I was sometimes confused why certain essays were chosen/included and how the essays fit into each section.
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I finished this book yesterday, but I haven't finished thinking about it. Full review to come
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This book is a perfect example of how to waste good intentions. “Disability Visibility”, edited by Alice Wong, is a collection of 37 essays by Americans with disabilities, few of whom are actually authors. Sadly, it shows. I don’t remember last time I read such badly written texts, which would however get such positive reviews. It suggests to me that people focus on the fact that it’s good this book exists, and its mere existence is more important than its quality. I can’t share this sentiment.
Many of the authors are queer, many are also POC. They have various disabilities and quite a few actually do not specify what their disabilities are. I expected to find personal stories that would shed light either on the disabilities and their implications in the authors’ lives or describe what in the American system is wrong and what and how it could be corrected. The few conclusions I was able to make is that Americans with disabilities, especially if they belong to ethnic minorities and are not straight are routinely discriminated against, abused as children and harassed as adults. The healthcare system is an abomination (which I knew before reading this book) and the whole country is terribly unsafe for people with disabilities. I learned a little - though too little - from brilliant essays about dealing with disabilities in prison, about awful New York City’s paratransit service and about the treatment of indigenous people with disabilities. Not much more. Most essays were full of undirected anger at just about anyone, many were simply unfocused, incoherent ramblings and over and over again I was asking: “Author, what are you trying to say?”. So much chaos, in such bad need of thorough editing. Several authors reflected on the notion of identity and whether disabilities are an intrinsic part of who they are - when well articulated these thoughts were fascinating to read.
The biggest failure of this book is that it really doesn’t open a discussion. Most authors have such a condescending, patronising tone that they really don’t encourage readers to ask questions and engage more deeply - and that’s exactly what readers should be doing after reading. -
This was a solid collection of essays from voices rarely heard in publishing, or elsewhere. Ableism is baked into our culture. I read this for Read Harder this year, and this is why I like participating in that challenge every year, because there is always a couple books I probably would never have read otherwise, and this is one of those.
Like most essay collections, there are ones that are stronger than others. The standouts for me were the very first essay by Harriet McBryde Johnson, in which she famously took on a debate with a man who was advocating aborting fetuses with disabilities and genetic conditions, so basically a eugenicist, which means she was effectively advocating for her own right to exist for public spectacle. It was gobsmacking.
Other standouts were the essays by Ariel Henley (which takes on the Golden Ratio), Haben Girma (about seeing eye dogs), Keah Brown (about nurturing Black disabled joy), Zipporah Arielle (about Selma Blair and her fabulous cane), Wanda Diaz-Merced (about innovations in science that makes it possible to hear instead of see results), Shoshana Kessock (about being bipolar, in which she muses on Hannah Gadsby), and Britney Wilson (about NYC's paratransit network).
Read Harder Challenge 2021: Read an own voices book about disability. -
Everyone should read this. That is all.
Disability Visibility is a collection of essays from disabled authors of various backgrounds. There's no way to summarize all the types of disability because the community is vast and diverse. This book is beautiful in how it celebrates and uplifts all kinds of disability and disabled authors. Disability representation is still incredibly low in the publishing industry, I really hope it's something we see more of. Disabled people deserve so much better than what society and publishing has given them. It's long past time we had a seat at the table, accommodations to get there and are not boxed in to what we can write.
This book will make you rethink about disability and what you know. It will challenge you to learn more and do better. It will make you think about the books that you pick up. I hope it helps open more doors and start conversations that we desperately need to have. I cannot recommend this book enough.
CWs from each story as provided by the contributor:
Unspeakable Conversations: eugenics, infanticide, assisted suicide.
There's a Mathematical Equation that Proves I'm Ugly: bullying, suicidal ideation.
The Erasure of Indigenous People in Chronic Illness: settler colonialism, genocide, racism, sexism, ableism, erasure, sexual assault, violence, suicide, suicidal ideation.
The Isolation of Being Deaf in Prison: sexual assault, language deprivation, isolation, incarceration, trauma, audism.
Common Cyborg: hate, misogyny, harassment, rape threats, death threats, racism, suicide, sterilization, ableism, eugenics.
We Can't Go Back: institutionalization, abuse.
Last but Not Least: body shaming, groping, sexual harassment.
The Antiabortion Bill You Aren't Hearing About: bodily autonomy, eugenics, ableism, trauma, sexual assault, medical trauma, objectification, carceral state, sterilization.
Incontinence is a Public Health Issue...: suicidal ideation, bullying, body shaming, infantilization.
Failing/Burning: suffering, medication, spoilers for Hannah Gadsby's Nanette.
Lost Cause: abuse, racism, ableist language, child neglect, torture, poisoning, self-harm.
Disability Solidarity: state violence, anti-Blackness, racism, ableism, audism, police brutality, incarceration, murder, white supremacy.
Time's Up for Me, Too: sexual assault, intimate partner violence, abuse, trauma. -
Finally a book that lets those of us who struggle with disabilities feel seen and heard and validated. A wonderful collection of so many different voices and experiences. Raw and deeply honest. Wonderful. Alice Wong is flipping amazing!
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An anthology of essays and speeches by authors with disabilities, collected loosely under the headings, "Being," "Becoming," "Doing," and "Connecting." It was a very worthwhile read, and makes me want to read more about disability justice and by authors with disabilities. Many of the pieces were quite brief and overly general/broad in focus, but some really stood out and made me look at things with fresh eyes, in particular:
- "Unspeakable Circumstances," by Harriet McBryde Johnson, in which the author is hosted at Princeton by philosopher Peter Singer to debate his views on euthanasia of infants with disabilities.
- "The Isolation of Being Deaf in Prison," by Jeremy Woody, as told to Christie Thompson, which was absolutely infuriating and heart-breaking ("They housed us sometimes with blind folks, which for me made communication impossible. They couldn't see my signs and gestures, and I couldn't hear them.")
- "Common Cyborg," by Jillian Weise, which was really mind-blowing in claiming and problematizing a 'cyborg' identity, and contrasting it with non-disabled 'tryborg' enthusiasts ("It can be, can be, a bit intimidating to claim cyborg identity. I feel like I risk getting it wrong...I worry that the cyborg is just a sexy way to say, 'Please care about the disabled,' and why should I have to say that? I worry that the cyborg is too much an institution, an illusion of the nondisabled, the superhero in the movie, the mixed martial artist, the bots who either make life easy or ruin everything. Yet I recognize the disabled who double as cyborgs. ... There is a cyborg hierarchy. They like us best with bionic arms and legs. They like us Deaf with hearing aids, though they prefer cochlear implants. It would be an affront to ask the Hearing to learn sign language. Instead they wish for us to lose our language, abandon our culture, and consider ourselves cured. They like exoskeletons, which none of us use. They don't count as cyborgs those of us who wear pacemakers or go to dialysis. Nor do they count those of us kept alive by machines, those of us made ambulatory by wheelchairs, those of us on biologics or antidepressants. They want us shiny and metallic and in their image.")
- "The Antiabortion Bill You Aren't Hearing About," by Rebecca Cokley, in which the author argues from a prochoice perspective ("The right to decide what happens to our bodies is a fundamental principle in the disability community, and with good reason.")
- "Six Ways of Looking at Crip Time" by Ellen Samuels, a very moving reflection ("Crip time is time travel. Disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings. Some of us contend with the impairments of old age while still young; some of us are treated like children no matter how old we get. The medical language of illness tries to reimpose the linear, speaking in terms of the chronic, the progressive, and the terminal, of relapses and stages. But we who occupy the bodies of crip time know that we are never linear, and we rage silently - or not so silently - at the calm straightfowardness of those who live in the sheltered space of normative time.")
- "On NYC's Paratransit, Fighting for Safety, Respect, and Human Dignity," by Britney Wilson, a young disabled lawyer on the indignities and outrages of getting around the city ("As the driver got off the bus to let the lift down, he yelled, 'You're lucky I didn't leave you. It's been more than five minutes.' 'Five minutes?' she asked. 'I've been waiting for this ride for over three hours. The people in the McDonald's let me sit down and wait inside, and I didn't see you when you first pulled up.' 'You're over the bag limit,' the driver added. The limit is two. You have three. That's what's wrong with Access-A-Ride people. You take advantage. You're spoiled and entitled.'").
These are essays I'll be thinking about for a long time. 3.5. -
4.5/5
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🎉🎉🎉🎉🎉 (five stars, as ranked in confetti because this book is ABSOLUTELY PHENOMENAL!)
▪
Real talk: if you only read one book for the rest of the year - make it this one. This was outstanding from start to finish. Disability Visibility is made up of 37 short stories, written from the perspectives of thirty seven uniquely impressive and experienced individuals. Their stories touch on everything from the shortcomings of the fashion industry to the abject horror that is the prison industrial complex. Alice Wong has done an exemplary job of compiling essays and speeches into one, profoundly engaging and indisputably important piece of non-fiction. 🎉
The stories are earnest, fast paced and gripping while also densely factual. Further, everything that was first laid in front of the reader at the beginning is masterfully brought back around by the end. Truly remarkably. I found myself obsessively researching nearly each author’s respective body of work and am now following many of them. I am blown away that one such impressive collection of people can be so well represented within a single book and can not recommend your reading it highly enough. -
Disability Visability is an anthology which brings together a variety of perspectives from disabled people on the 30th anniversary of the Americans With Disabilities Act. Some of the pieces were written specifically for this anthology while others appeared previously in print or online. As with many such collections, this is somewhat of a mixed bag. All of the pieces are clearly written from a place of passion about each author's individual experience of disability. However, some of the writers are far stronger than others, and for every stand-out article there are a handful that at minimum needed another draft to reach their full potential. Still a worthwhile read.
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very grateful to have been able to read this anthology. i read a few pieces each day throughout the past few months and cannot recommend this enough!
some standout pieces for me were
- “unspeakable conversations” by harriet mcbryde johnson
- “the isolation of being deaf in prison” by jeremy woody (as told to christie thompson)
- “incontinence is a public health issue - and we need to talk about it” by mari ramsawakh
- “on nyc’s paratransit, fighting for safety, respect, and human dignity” by britney wilson
- “love means never having to say… anything” by jamison hill
brilliant overall! will be checking out more from the “further reading” section at the end as well -
This year marks the 30th anniversary of the Americans with Disabilities Act. You may or may not know that 1 out of every 5 Americans is disabled, whether visible or not, and that number is even more startling for Black Americans, wherein 1 in every 4 are disabled. This collection, expertly curated and edited by disability activist Alice Wong, is not only timely, but it’s a vital anthology for readers -- abled and disabled -- to understand the realities of disability and disability justice today.
Broken into four sections -- Being, Becoming, Doing, and Connecting -- each of the essays digs into something related to the theme at hand and each piece is tightly written by a wide range of contributors. Some of the names will be familiar, while others will be new names, but there’s not a single weak essay in the collection.
Among the ones that really stood out to me included “The Isolation of Being Deaf in Prison,” wherein Jeremy Woody tells his experiences being Deaf behind bars to Christie Thomas. It’s something I’ve never thought about, despite my own interest with prison justice.
In the Becoming section, Haben Girma’s piece on how guide dogs aren’t leading Blind people but instead are being led by them really made me pause. I had an incredible opportunity last year to spend time with Dr. Kathie Schneider, who founded and funds the Schneider Family Book Award for presentation of the disability experience in children’s literature, and she took me to the University of Wisconsin Eau Claire’s campus, wherein there’s a statue of a guide dog -- hers -- and what all it represents for the school and for the study, understanding, and humanity of those with disabilities. Girma’s essay was a reminder of how symbols mean so much more than what a general population might think they mean. This section also had a great piece by Keah Brown about Black Disabled Joy that reminded me how fantastic her writing is. Keshia Scott has a piece in this section, too, about asexuality and how it relates to the disability experience that will mean so much to queer -- especially ace -- readers.
Zipporah Arielle wrote a powerful piece about why more celebrities like Selma Blair speaking up and out about disability and living visibly with it could make a tremendous impact for disability justice.
Eugene Grant writes about Benjamin Lay, an abolitionist Dwarf, and how much a shame it is that people’s disabilities and bodies don’t take up more space in history books alongside what they did -- Lay’s story and experiences as a Dwarf would have changed so much, given that representation of Dwarfs in pop culture is as a joke or laughter or side kick and never central or hero.
s.e. smith’s piece at the end of the book explores what it is to see a performance on stage where literally every performer is disabled, where there are interpreters for the show, and wherein nearly the entire audience is disabled as well -- and what happens when someone who is able-bodied takes the mic in that space.
These essays will challenge you, whether or not you’re disabled, and they’ll be reminders of how much work there is still to do in order to make spaces accessible and welcoming to those of all disabilities, visible or not. Moreover, these pieces are a cry to center disabled voices and experiences when it comes to change and reform across all sociopolitical arenas, including in otherwise diverse spaces where disability is still not always part of an organization or movement’s mission.
Necessary reading that’s easy to read cover to cover OR, like I did, pick up and put down to really think about what the pieces each said. We don’t have enough books about disability from disabled voices. This is a crucial addition to the small -- but growing -- shelf. -
Really strong collection of personal essays from writers with a wide variety of disabilities and in some cases viewpoints. The "Visibility" part of the title of this anthology was a theme throughout the essays: and this collection made me realize how mainstream society isolates and literally marginalizes people with disabilities to the point where they are not usually seen - let alone listened to and properly accommodated.
One big aha for me was shifting my thinking about what defines a disability. I hadn't thought that "invisible" chronic diseases such as fibromyalgia and chronic fatigue syndrome were disabilities - I thought about them as medical conditions. Another theme that came up in several of the essays was about the medicalization and institutionalization of disabled people and how that in itself is both isolating and counter towards the better approach of systematic reforms in all areas of life such as education, transportation, and of course health care.
This book was also probably the most truly intersectional thing I've ever read. Kudos to Alice Wong and the contributors for sharing these stories.
Recommended. -
4.5
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"Stories are the closest we can come to shared experiences. ... Like all stories, they are most fundamentally a chance to ride around inside another head and be reminded that being who we are and where we are, and doing what we're doing, is not the only possibility." - Harriet McBryde Johnson
This quote lies at the heart of why I love reading books. The chance to experience other lives, other people's thoughts and emotions, other time periods and other worlds. It's also the driving force behind Disability Visibility and the reason why I highly recommend you read it.
To start with, set aside any desires to be inspired. "The word inspired is reviled by many in the disability community, who often are the subject of pity or undue praise for merely existing. ... There is a tendency in our culture to turn disabled people into objects of what's known as inspiration porn." -- Zipporah Arielle. Disability Visibility doesn't shy from the harsh reality of disability in today's world, all the challenges--micro and macro--that most people never think about or are even aware of. It can be uncomfortable as well as illuminating.
Disability Visibility is also designed to both broaden and give nuance and complexity to your images of disability. "The face of the disability community is very white. People don't often think of people of color or of LGBTQ+ people when they think of us. Instead, they think of cis white male wheelchair users who hate themselves, because that is so often the way pop culture depicts us." -- Keah Brown.
Two stories stayed with me the most in this collection. (And as a good sign of how well-curated the essays are, I see that other Goodreads reviewers had their own favorites.) The first was the essay by Britney Wilson as she shares the experience of using the NYC's Paratransit system. In theory, this sounds like a brilliant idea. The reality is far from it. And light years away from the experience that so many of us have with Uber and Lyft.
The second was by Jeremy Woody who served four years for a probation violation. He's Deaf and communicates with sign language. This was just part of the discrimination he faced: "I met several other deaf people while I was incarcerated. But we were all in separate dorms. I would have liked to meet with them and sign and catch up. But I was isolated." At times, things got farcical: "They housed us sometimes with blind folks, which for me made communication impossible. They couldn't see my signs or gestures, and I couldn't hear them."
At the beginning, Alice Wong, who curated this collection of essays, outlines how she wants Disability Visibility to help shift perceptions and to show "disabled people simply being in our own words, by our own accounts." As a collection of voices, identities and lives, it works (although not all the essays work individually). And by the end of reading this, you're left with one clear thought and reminder: "It is a privilege to never have to consider the spaces you occupy." -- Sandy Ho.
Thanks to Vintage for the ARC. All opinions are my own. -
This is a collection of essays by people with various disabilities, all of whom challenge the status quo, push back against ableist views, and write about their own unique life experiences. I found this very educational, and some of the essays are extremely engaging, like the one about the disability advocate who publicly debated Peter Singer about his eugenicist views. However, the quality varies widely. I ended up skimming some of the essays, especially as I got further into the book, because many of them are very repetitive and lack thought diversity.
There is nothing wrong with various people reinforcing the same points, but many of them did so in the exact same way. This was especially common when people were sharing political messages, and even though some writers conveyed political ideas in a meaningful way through their personal stories, others just repeated the same canned ideas again and again. I don't doubt the sincerity of the individual writers, but I began to wonder if disabled people who hold different political views, or who don't use the same slogans and phrases, would have even been invited to contribute to this collection.
This book would also have benefited from religious diversity. There is an essay from a Muslim about the challenges of choosing whether or not to fast for Ramadan, and a Christian woman wrote about learning to love and enjoy church apart from other people's expectation that she should seek divine healing. However, aside from one mention of someone else's involvement in a disability ministry at their church, that's it. Out of thirty-seven essays, two connect with someone's religious experiences, and a third mentions church in passing. The vast majority of the essays are completely secular, and a large number explicitly express atheist views.
I wish that this book were more inclusive and balanced, because even though it's fine for someone to create an essay collection that focuses on secular views or particular political philosophies, this book isn't billed that way. Its back cover description says that it conveys the "vast richness and complexity of the disabled experience," and its goal is to uplift the voices of marginalized people and help them share their stories to a wide audience. Thus, even though I would like to give this book four stars for the educational and persuasive power of the best essays, I am reducing it to three for its deceptively narrow focus. -
I keep typing out a review for this then deleting large pieces and starting over. This one hit home for me in ways that are difficult to discuss. I'll eventually put it together. For now the tl;dr is that this book balances struggle and analysis with hope, kindness, and liberation.
