This book is a "must read" not in a page-turning-I-couldn't-put-it-down kind of way, but rather, because everyone should be exposed to the ideas in these essays.
As someone just beginning to learn about disability justice, I picked up the book after hearing about the editor, but all the writers were new to me. Pro Tip: There's an "About the Contributors" section towards the end of the book with a paragraph-long blurb on each author. I also found myself researching some of the writers online, to learn even more about who they are and what they do.
Some essays include "content notes" at the start of the piece, essentially a "content/trigger warning", so the reader is prepared to confront topics like sexual assault or suicide.
Was it uncomfortable reading personal stories about people's disabilities? Yep. But it was the kind of uncomfortable that everyone needs to sit with. These are people! These are their lives! There's the incarcerated deaf man who is punished as recalcitrant when he's handcuffed and unable to sign or write, and is denied an interpreter when his deafness is even acknowledged. The amputee with a prosthetic leg who needs to make sure she walks an "average" (p. 74) number of steps a day, recorded by the leg's technology, in case her insurance company tries to deny her the leg on the grounds she doesn't use it enough. All people deserve dignity and to be included in our definitions of humanity and society. People with disabilities deserve more than survival; they deserve to have access to all the opportunities and spaces abled people have, with whatever assistance they need, without feeling like a burden to others.
What's most striking about this collection is how intersectional the essays are. This book is not just about disabilities in themselves, but about being a disabled black woman, or making a significant contribution to science as a blind astronomer. Authors offer their perspectives on disability and parenting, or disability and sexuality. There's an essay about having to reconcile being disabled and Muslim during Ramadan, when those with medical conditions are exempt from fasting; a fashion manifesto about disabled queer clothing; a piece about navigating disability as an Asian American in an immigrant family with a culture that stigmatized disabilities. Some of the authors are born with disabilities, some are disabled by new onset medical conditions or injuries. Some accept their disabilities as part of their identity while others may hope for a cure or recovery. The essays drive home the point that "the presence or absence of a disability doesn't predict quality of life." (p. 9)
Since learning about disability activism, I've been increasingly frustrated at how DEI (Diversity, Equity, and Inclusion) leaders and organizations routinely ignore disability. They rightly fight for so many marginalized groups but somehow stop short of recognizing that "disability rights are civil rights" (p. xvii). According to an essay by the Harriet Tubman Collective, "60 to 80 percent of the people murdered by police are... Disabled and/or Deaf people." (p. 237) When the Movement for Black Lives completely omitted any mention of disability from their 6-point platform released in 2016, the Harriet Tubman Collective said, "It is disingenuous, at best, and violently irresponsible at worst, to claim to want justice for those who have died at the hands of police, and neither name disability nor advance disability justice." (p. 240) It looks like the Movement got the message, because their website does now mention disability and ableism. This awareness still needs work at the local level, where I have yet to see any DEI initiatives address disability. (Notably, in these covid times, widespread masking would allow people at higher risk for severe illness to more safely enter public spaces, yet masking as a disability accessibility issue is widely disregarded.)
On a personal note, I don't consider myself disabled, but having had cancer, and having gone through related surgeries and chemo and other treatments - some that have left me with permanent, uncomfortable-but-not-disabling side effects - I understand plainly that anyone can become disabled at any time, and I feel I've existed, perhaps sometimes still exist, temporarily, within the disability world. Some aspects of disability resonate with me and, in particular, an essay by Ellen Samuels struck me like an epiphany. (One of the many things I learned in this book is that the disabled community is reclaiming the word "crip", slang for "cripple"; I would not use the term myself, but I am including it below as part of the original quote.)
"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... Some of us contend with the impairments of old age while still young... we rage silently--or not so silently--at the calm straightforwardness of those who live in the sheltered space of normative time... Crip time is grief time... What I have found much harder to let go is the memory of my healthier self. With each new symptom... I grieve again for the lost time, the lost years that are now not yet to come... crip time is broken time. It requires us to break in our bodies and minds to new rhythms... It forces us to take breaks, even when we don't want to... It insists that we listen to our bodyminds so closely, so attentively, in a culture that tells us to... push the body away from us while also pushing it beyond its limit... crip time is vampire time... we live out of time, watching others' lives continue like clockwork while we lurk in the shadows." (p. 190-192, 195-196)
