Book: Disablity Visibility: First-Person Stories From the Twenty-First Century edited by Alice Wong
Genre: Memoir essay collection
Publisher: Vintage Books, Penguin Random House
Publication date: 2020
Source: Trade paperback, borrowed from the library
Summary: Disability Visibility is a collection of personal essays. The writers and topics are diverse in all kinds of ways: types of disability, race and ethnicity, gender and sexuality, goals and dreams. Together, they represent community — often with much more verve and creativity than the community that I see created among those of us who claim to be abled.
This was the January book for the Community for Understanding and Hope Book Group, a book club that has existed since the summer of 2008. Disability Visibility was the 133rd book that we’ve read together. We’ve mostly read books about race in America, focusing especially on the Black and white experience.
Disability Visibility was our first book on the disabled experience, even though, as we talked about last night, it’s the largest of the marginalized groups in America and one that we are all likely to join, for either brief or long periods during our lives.
Thoughts: Here’s where my thoughts went.
I started with an appreciation for my plan to grow up to be a physical therapist. That didn’t come to fruition, but I did read and experience enough to get past a notion that I absorbed from society even as a child — that life wouldn’t be worth living as a disabled person. There were enough counter-examples in the material that I sought out to jump over that hurdle.
Some of that material, however, was what a few essays in this book labeled as “inspiration porn.” These stories taught my young self that if disabled people could accomplish things with their challenges, imagine what I could do! It’s not too hard to spot the lack of empathy in using other people’s challenges for my own purposes, while not engaging with them as people.
I had a small taste of this as a 23-year-old cancer survivor. People would say “You’re so brave.” That sounds like a compliment, and I took it as such. But I also took the strong message that this person didn’t want to hear about my fears of relapse or dying, of losing my job or my health insurance. They didn’t want to know about how much I dreaded my next chemotherapy treatment and its accompanying impacts on my already battered body.
Disability Visibility built on that to give me a new insight. This quote comes in a passage about assisted suicide in the first essay, “Unspeakable Conversations” by Harriet McBryde Johnson:
I argue that choice is illusory in a context of pervasive inequality. Choices are structured by oppression. We shouldn’t offer assistance with suicide until we all have the assistance we need to get out of bed in the morning and live a good life. Common causes of suicidality–dependence, institutional confinement, being a burden–are entirely curable. (pp. 20-2)
The things that make abled people think that living with a disability would be unsustainable are fixable.
That thought opened me up to the many examples in other essays of what it can look like when people with disabilities are valued for their abilities. It was expressed in lots of ways, but here’s a succinct quote from “On the Ancestral Plan” by Stacey Milbern where she recognized the disabled people of the past as part of her lineage:
My ancestors are disabled people who lived looking out of institution windows, wanting so much more for themselves. It’s because of them that I know that when I reflect on the meaning of a “good life,” an opportunity to contribute is as important as receiving the support one needs. (p. 269)
What if family, community, and society were organized in a way that each of us is supported in our quest to live a good life, by our own definition of that? A good starting point for that project would be the people who have the most challenges with living in society as it is structured today. What we learn from changing systems to improve the lives of people with disabilities, following their lead, will help us all.
Here’s a final quote about how that might play out in the ability of the human race to survive climate change. This is from the essay, “To Survive Climate Catastrophe, Look to Queer and Disabled Folks” by Patty Berne:
In this time, people need strength models. Strength isn’t just about momentary power to jump building to building; it is also the endurance to handle what is less than ideal. It’s the gritty persistence that disabled people embody every day.
Even in the moments when we’re in pain, when we’re uncomfortable, when the task ahead feels overwhelming and we feel defeated by the sheer scope of everything that’s wrong in the world, we don’t have to give up on life or on humanity. Queer and trans disabled people know that, because that’s how we live. At this moment of climate chaos, we’re saying: Welcome to our world. We have some things to teach you if you’lll listen so that we can all survive (p. 235)
Appeal: This isn’t just my opinion; this is the consensus of my book group — everyone should read this book.
Challenges: Disability Visibility counts for two of my reading challenges. This is my first of five books for the 2023 Diversity Reading Challenge and the second of six books for the 2023 Nonfiction Reading Challenge.
Have you read this book? What did you think?