Disability Visibility

 Book 38 of my 2021 Reading Challenge

Disability Visibility by Alice Wong

Summary (via Goodreads)

published 2020

One in five people in the United States lives with a disability. Some disabilities are visible, others less apparent—but all are underrepresented in media and popular culture. Now, just in time for the thirtieth anniversary of the Americans with Disabilities Act, activist Alice Wong brings together this urgent, galvanizing collection of contemporary essays by disabled people.

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.

First Impressions/Judging a Book by Its Cover

I can't remember exactly where it was but I added this book to my "to-read" list after it was mentioned in an article about books covering disabilities.  This topic is very important to me - I have a mom with MS, a sister with Down Syndrome, and I work as a respite/SCL provider.

Books with stories/essays by multiple authors appeal to me and especially in this book, I imagine I will hear many perspectives.  I'm looking forward to reading it.

My Opinion

3 stars

As I mentioned above, my sister was born with Down Syndrome when I was 5 and my mom was diagnosed with MS when I was 14 so I have the personal experience.  I also have a psychology degree and work as a Respite/SCL provider so I have professional experience as well.  With that being said, there are still a range of disabilities and experiences I've never seen so this book made me think about things I hadn't before.  For example, reading about the deaf prisoner.  In his experience, all cellmates with disabilities were put together so he had a blind cellmate the majority of the time; this left them with no way to communicate at all (there were other ways that he wasn't treated equally but I pulled this most cut-and-dry one as an example).  I didn't need a reminder that there's a difference between being technically compliant and actually providing equal service but his was a viewpoint I hadn't heard before.  

This was a really interesting project and unique concept.  I think stories like these are necessary because it matches how I feel.  Not everyone living with a disability is heroic or "brave" and their stories are just as valid as anyone else's.  For all the stories about "regular" individuals, that doesn't happen with people with disabilities; their stories have to be magical and about perseverance and overcoming obstacles to meet "norms" to be heard.

You don't have to be "handicapable" (good grief, that term makes me cringe!) to be seen and allowed to exist.

I especially resonated with the essay by Ellen Samuels comparing disability to time travel.  When you don't hit milestones at typical ages you also don't experience life in a linear fashion.  Sometimes you're treated as older (her example was attending a water aerobics class filled with people decades older than her; their symptoms were the same, theirs from typical aging after living an active life but hers from a physical disability, so they were a good peer group for commiserating but not the same because of experiences beforehand) and sometimes you're treated as younger (such as when people don't factor in adult hormones when working with someone with a mental disability).

As with any book with essays by multiple authors, there were some I liked more than others.  The 3 star rating reflects that; I'm glad I read it but I'm also not recommending it to everyone I know.  I am very very happy that this book exists and people who may have been overlooked in the past were given a voice/platform.

A Few Quotes from the Book

"I know only that in chasing to achieve the person I once was, I will miss the person I have become." ~ Jillian Weise

"As disabled people, we are often both hyper visible and invisible at the same time." ~ Leah Lakshmi Piepzna-Samarasinha