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Breath & Shadow

Spring 2021 - Vol. 18, Issue 2

"Necessary Discomfort: A Review of ‘Disability Visibility: First-Person Stories
From The 21 st Century’"

written by

Chris Kuell

“Remember--You aren’t the one who made you feel shame, but you are the one who can make you feel proud.”

-- Laura Hershey

When I heard about activist Alice Wong’s anthology ‘Disability Visibility: First-Person Stories From The Twenty-First Century,” I knew it was something that should be reviewed in Breath and Shadow. After all, our primary mission is to help get the voices of writers with disabilities out into the world. And since I’d just finished ‘Talking to Strangers’ by Malcolm Gladwell, and generally like to keep a nonfiction book going at all times, I decided I’d be the one to review it.

The book consists of 37 essays, blogposts, Op-Ed pieces, Congressional transcripts, a eulogy, as well as an introduction by Alice Wong. The collection is well-written, it’s powerful and emotional, and often made me feel, if I’m being honest, uncomfortable.

Firstly, there’s a lot of raw truth captured in these pieces, and often it’s not pretty. There is mistreatment and sexual and physical and psychological abuse. There’s testimony from someone imprisoned and mistreated, and the eulogy of a young trans person by someone who loved them dearly. Dead, at 22, when life was just starting. Put bluntly--it’s sad.

But, there is hope. There are valuable insights. We see a doctor who has struggles to overcome, and one of my favorites, Ellen Samuel’s philosophizing about ‘various Ways to Look at ‘Crip Time’. There is a story about a blind lady and how well she travels with her guide dog, and the frustration of people who want to buy clothes that make them feel sexy, even if they are in a wheelchair. So many people with disabilities grow up thinking they are the only ones who experience the world the way they do. Perhaps reading these stories will help them feel a little less lonely, and a little more hopeful.

It’s not a Chicken-Soup-To-Make-You-Feel-Better kind of book. It’s a glimpse into the incredibly diverse and intersectional world of people with disabilities., It includes writers from various cultures and experiences and socio-economic backgrounds. It’s a book that needs to be read by those who don’t see us, or look away when they do.   It’s a book that might make you feel a little bit uncomfortable, but that’s okay. We should feel uncomfortable. We need to feel uncomfortable in order to generate the energy to make things better.

“Yet, as disabled people, we know that one of our biggest gifts is the mad, sick, disabled, deaf dreams we are always dreaming, and have always been dreaming, way beyond what we are allowed to dream.”

--- Leah Lakshmi Piepzna-Samarasinha

Disability Visibility: First-person Stories from the Twenty First Century, edited by Alice Wong, Vintage, June 2020 309 pages

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