Disability Visibility by Alice Wong
Title: Disability Visibility: First-Person Stories from the Twenty-first Century
Editor: Alice Wong
Published: 2020
Type: Non-Fiction
Pages: 275
Embracing my own joy now means that I didn’t always. Hope is my favorite word, but I didn’t always have it. Unfortunately, we live in a world that assumes joy is impossible for disabled people, associating disability with only sadness and shame. So my joy – the joy of professional and personal wins, of pop culture and books, of expressing platonic love out loud – is revolutionary in a body like mine. I say this without hyperbole, though fully aware that the thought may confuse, frighten, or anger people. As a black woman with cerebral palsy, I know what it is like to encounter all three.
In Brief:
Such a powerful collection with a remarkable variety of perspectives and emphasis on intersectionality – I strongly recommend it as an introduction to disability discourse/literature/action.
Rating: 4.3
Synopsis:
Again, I’m going to cheat and pull from the Goodreads summary to help me catch up:
“According to the last census, one in five people in the United States lives with a disability. Some are visible, some are hidden—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 an urgent, galvanizing collection of personal essays by contemporary disabled writers. There is Harriet McBryde Johnson’s “Unspeakable Conversations,” which describes her famous debate with Princeton philosopher Peter Singer over her own personhood. There is columnist s. e. smith’s celebratory review of a work of theater by disabled performers. There are original pieces by up-and-coming authors like Keah Brown and Haben Girma. There are blog posts, manifestos, eulogies, and testimonies to Congress. Taken together, this anthology gives a glimpse of the vast richness and complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own assumptions and understandings. It celebrates and documents disability culture in the now. It looks to the future and past with hope and love.”
Where I’m At:
Perhaps obviously, the main thing that affected my reading of this book was my own privilege. There are many ways in which I often recognize my privilege – my whiteness, economic background, education, being cisgendered – but I often forget to count my health, my able-bodiedness, among those unearned advantages. My body is a constant companion, an ever-present object of scrutiny, yet I hardly appreciate all it does for me, or take time to think about those who are different.
Why is that? I don’t think I’m an un-empathetic person. I try to take myself seriously, think about my background, and the implications it bears. I’m not perfect, but I try to be anti-racist, try to be inclusive, try to listen and learn – but disability and issues of ableism just don’t occur to me very often.
Some of the answer probably lies in the title of the book – there’s such little visibility for people with disabilities in the United States, such little attention given to the intersectionality of it. There’s such a deep stigma in our culture, a sense that people with disabilities should be hidden. Reading these stories was humbling and eye-opening, capturing my attention and hopefully moving me towards better, more complete allyship.
Getting Into it:
Due to the vast variety of stories in this book, it’s hard to formulate a consolidated review. There were so many different perspectives, styles, formats – which, on its own, was fantastic. There were 38 individual essays, offering an effective way to learn about a diversity of experiences. It also kept the read engaging – the essays are short quick to get through, always something new and interesting.
Given just the abundance of authors, there’s also naturally a range of technical quality among the essays– though I can hardly critique the content, some were just stronger than others. Some were more engaging, or had better writing – I can’t say it was a uniformly flawless collection. But it hardly mattered, given that if you (as the reader) don’t particularly love one essay, it’s over quickly and you can start anew with the next.
It’s also technically ordered in a way that makes sense – the essays are grouped by “Being,” “Becoming,” “Doing,” and “Connecting.” The very first essay does an impressive job framing the rest of the collection – disabled activist Harriet McBryde Johnson ruminates on her interactions and relationship with Peter Singer, a famous modern philosopher (and major influence in Effective Altruism, which my job is related to – just to disclose any bias I might have). Along with his more well-known advocacy for vegetarianism and animal rights, Singer supports infanticide for babies born with disabilities like Johnson’s, arguing that favor should be given to non-disabled babies who will have a better chance at happiness. Despite his views, his questioning of whether Johnson should even exist – Johnson extends empathy to Singer. She doesn’t treat him like a monster in the way other activists encourage her to, refuses to see him as anything less than human. This reflects one of the core messages of the book – that all people, including those with disabilities should be given their due, brought into society, and acknowledged as nothing less than human.
The collection particularly shines an light on intersectionality. One of the most powerful stories to me was “The Erasure of Indigenous People in Chronic Illness” by Jen Deerinwater, which discusses the health issues faced by indigenous people, and the ways it’s compounded for people who are women, and disabled. There are stories about people who are queer and disabled, Black and disabled, incarcerated and disabled. So many of these issues I usually think about independently weave together, ableism right there with racism, vital for society to tackle.
Overall, I think this book is really important, and definitely recommend it. It provides the reader with a glimpse into what it’s like to live with a disability (or several) in a highly ableist world, as well as the ways in which the challenges can be overcome. Even more than that, it reminds the reader that people with disabilities are still just people – people with rage and joy and hobbies and pettiness – not defined by their disability. It’s sad that it even has to be said, but still a worthwhile reminder, worthwhile read.
