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

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.

A wonderful collection of personal stories about disability justice by disabled writers, artists, activists, researchers, people. Here are my notes about some of the ones that struck me the most...

I am embarrassed to admit that I did not know Peter Singer - one of the people who inspired my ethics around veganism - was such an ableist eugenicist. Harriet McBryde Johnson talks about this in the first story in the anthology, her story of how she confronted Singer in the early 2000s.

The Isolation of Being Deaf in Prison by Jeremy Woody as told to Christie Thompson is chilling.

Common Cyborg by Jillian Weise is a mind-bending reflection about technology, AI and disability: "The cyborg is the engineer's dream. The engineer steers and show more manipulates the human to greater performance. As a common cyborg, I subvert that dream." (Note to self to look into Donna Haraway's 'A Cyborg Manifesto,' which Weise critiques because it "promised a cyber-feminist resistance" but instead, tech "has been so effective at erasing disabled women that even now in conversation with many feminists, I am no longer surprised that ability does not figure into their notions of bodies and embodiment.... Our lives are not metaphors."

The emotion of "How to Make a Paper Crane from Rage" by Elsa Sjunneson is palpable: "With each closed door, with each insult, I fold. I crease. I twist. I bend. I make something out of the rage that wells up inside of my chest. It sits somewhere beneath my collarbone; I can feel it sometimes. I live in a world that doesn't want me."

A.H. Reaume's story about how her friend Maddy helped her finish her novel was powerful in its simplicity - all too often the simple, basic ways people care for and support each other are overlooked - not necessarily at the individual level, but at the societal level. They are rendered invisible. I love the way she gives visibility to this.

Incontinence is a Public Health Issue - and We Need to Talk About it by Mari Ramsawakh. Yes!

Six Ways of Looking at Crip Time by Ellen Samuels. Brilliant. I love the way they take something supposedly as simple and straight forward as time and completely redefine it, and make you question all your assumptions about it.

Disability Solidarity: Completing the 'Vision for Black Lives' by Harriet Tubman Collective. Such an instructive piece. Also, it is a reminder that no movement is perfect. To have no heroes.

Leah Lakshmi Piepzna-Samarasinha's poetry and visions are beautiful. I want to read her book about care work.

Stacy Milbern's "On the Ancestral Plan" is part dedication to ancestry and a moving reflection on the power of ancestry. Instructive, too.

Finally, the last piece "The Beauty of Spaces Created for and By Disabled People" by s.e. smith is a concise, powerful, accessible piece about safe spaces and why they matter. show less

Thank you @netgalley and Penguin Vintage Books for this ARC of @disability_visibility. What a fantastic anthology! As a person with a chronic illness I am so grateful to this collection of authors. The experiences that these authors recount are, by turn, heart wrenching, relatable, funny, educational and most importantly, deeply human. I was exposed to people whose lives are being lived in the shadows and I was confronted with my own ableism in spite of being disabled myself. We have so far to go towards equality for people with disabilities. I commit to doing the work necessary to amplify the voices of people with disabilities.

I can't say that I enjoyed this book, I didn't take pleasure in the reading of it, when I finished an essay I didn't eagerly reach for the next page and yet despite that I think this is a good book. Reading these essays made me uncomfortable, made me squirm in my seat. It forced me to really think about things that I take for granted and made me aware of issues I hadn't had any knowledge of. I felt foolish at times, why had I never heard of these things (issues and movements within the disabled community) before? Why had I never stopped to consider my assumptions about what someone who is disabled would consider quality of life? To make an effort and do a little research? This book definitely gave me the kick I needed to start thinking show more critically about disability issues, showed me how little I know and gave me a jumping off point to other literature I can use to educate myself. show less

Not an easy book to read, and I appreciated the content warnings, but necessary reading for everyone, disabled or not. These are the kind of stories you don't easily forget, and you shouldn't.

Favorites: "There’s a Mathematical Equation That Proves I’m Ugly", "Radical Visibility: A Disabled Queer Clothing Reform Movement Manifesto", "How to Make a Paper Crane from Rage", "Why My Novel Is Dedicated to My Disabled Friend Maddy", "Six Ways of Looking at Crip Time", "The Fearless Benjamin Lay: Activist, Abolitionist, Dwarf Person", "Love Means Never Having to Say…Anything"

there's a wide mix of essays here but is a great place to start for learning about disability and the issues that come with it. but i definitely learned more from/resonated with some than others.

in jillian weise's essay, i couldn't believe that insurance can decide on whether or not someone walks enough or too much in order to qualify for another prosthetic: "I'm told by the technician to maintain an average amount of walking on a daily basis. Don't go overboard, but don't be lazy, either. Stay in the middle. The insurance company could pull my data and decide whether I have used my leg enough to justify the next one."

in the antiabortion bill you aren't hearing about by rebecca cokley: "It is hard to be a pro-choice disabled person who show more understands that believing in bodily autonomy means you have to support the idea that other people--your friends, your peers, your siblings--may choose to abort a pregnancy because their child could be like you. Yes, it's hard. But that's why it's a conversation we have to have, because if we don't, decisions about us and our futures get made by others, without us." and "What's equally harmful is that those on the pro-choice side often use disability as a monster under the bed, framing our lives as lacking dignity, independence, or value. Our lives are valuable because they're our lives. Why is this not enough?" and "We also live in a country where Buck v. Bell--the 1927 U.S. Supreme Court case in which the sterilization of people with disabilities was ruled constitutional--has never been overturned."

the end of leah lakshmi piepzna-samarasinha's poem: "There will be an after/Survive for it." show less

I liked this collection of essays, and especially how they focus on different disabilities and the intersectionality between disability and other marginalizations. I learned a lot from it; I was aware of some of the issues already, but many were things I was not aware of or didn't realize were as bad as they are.

The narration was good, including both the main text read by Alejandra Ospina and the introduction written and read by Alice Wong. It felt like all of the people (who wrote the essays) and marginalizations were treated with care and respect, and the content warnings added to the start of appropriate essays would be helpful to those who needed them.

My only minor complaint with the audio version of the book is that even though show more each new essay was introduced with the title and author's name, they were all narrated by the same person. While Alejandra Ospina was a good narrator, I couldn't get a sense of what the author's intersectionalities were unless they were specifically stated in the essay. I think I wouldn't have had that issue in a print book, since I could have more easily paused to look up the author before continuing. show less