More than 1 in 5 people living in the U.S. has a disability, making it the largest minority group in the country.
Despite the civil rights law that makes it illegal to discriminate against a person based on disability status — Americans with Disabilities Act passed in 1990 — only 40 percent of disabled adults in what the Brookings Institute calls "prime working age," that is 25-54, are employed. That percentage is almost doubled for non-disabled adults of the same age. But even beyond the workforce — which tends to be the prime category according to which we define useful citizenship in the U.S. — the fact is that people with disabilities (or who are disabled — the language is, for some, interchangeable, while others have strong rhetorical and political preferences), experience a whole host of societal stigmas that range from pity to disbelief to mockery to infantilization to fetishization to forced sterilization and more.
But disabled people have always existed, and in two recent essay anthologies, writers with disabilities prove that it is the reactions, attitudes, and systems of our society which are harmful, far more than anything their own bodies throw at them.
About Us: Essays from the Disability Series of the New York Times, edited by Peter Catapano and Rosemarie Garland-Thomson, collects around 60 essays from the column, which began in 2016, and divides them into eight self-explanatory sections: Justice, Belonging, Working, Navigating, Coping, Love, Family, and Joy. The title, which comes from the 1990s disability rights activist slogan "Nothing about us without us," explains the book's purpose: to give those with disabilities the platform and space to write about their own experiences rather than be written about.
While uniformly brief, the essays vary widely in terms of tone and topic. Some pieces examine particular historical horrors in which disability was equated with inhumanity, like the "The Nazis' First Victims Were the Disabled" by Kenny Fries (the title says it all) or "Where All Bodies Are Exquisite" by Riva Lehrer, in which Lehrer, who was born with spina bifida in 1958, "just as surgeons found a way to close the spina bifida lesion," visits the Mutter Museum in Philadelphia. There, she writes:
"I am confronted with a large case full of specimen jars. Each jar contains a late-term fetus, and all of the fetuses have the same disability: Their spinal column failed to fuse all the way around their spinal cord, leaving holes (called lesions) in their spine. [...] I stand in front of these tiny humans and try not to pass out. I have never seen what I looked like on the day I was born."
Later, she adds, "I could easily have ended up as a teaching specimen in a jar. But luck gave me a surgeon."
Other essays express the joys to be found in experiences unfamiliar to non-disabled people, such as the pair of essays by Molly McCully Brown and Susannah Nevison in which the two writers and friends describe the comfort and intimacy between them because of shared — if different — experiences; Brown writes at the end of her piece:
"We're talking about our bodies, and then not about our bodies, about her dog, and my classes, and the zip line we'd like to string between us [... a]nd then we're talking about our bodies again, that sense of being both separate and not separate from the skin we're in. And it hits me all at once that none of this is in translation, none of this is explaining."
While there's something of value in each of these essays, partially because they don't toe to a single party line but rather explore the nuances of various disabilities, there's an unfortunate dearth of writers with intellectual disabilities in this collection. I also noticed that certain sections focused more on people who've acquired a disability during their lifetime and thus went through a process of mourning, coming to terms with, or overcoming their new conditions. While it's true — and emphasized more than once — that many of us, as we age, will become disabled, the process of normalization must begin far earlier if we're to become a society that doesn't discriminate against or segregate people with disabilities.
One of the contributors to About Us, disability activist and writer Alice Wong, edited and published another anthology just last year, Resistance and Hope: Essays by Disabled People, through the Disability Visibility Project which publishes and supports disability media and is partnered with StoryCorps. The e-book, which is available in various accessible formats, features 17 physically and/or intellectually disabled writers considering the ways in which resistance and hope intersect. And they do — and must, many of these writers argue — intersect, for without a hope for a better future, there would be no point to such resistance. Attorney and disability justice activist Shain M. Neumeir writes:
"Those us who've chosen a life of advocacy and activism aren't hiding from the world in a bubble as the alt-right and many others accuse us of doing. Anything but. Instead, we've chosen to go back into the fires that forged us, again and again, to pull the rest of us out, and to eventually put the fires out altogether."
You don't go back into a burning building unless you hope to find someone inside that is still alive.
The anthology covers a range of topics: There are clear and necessary explainers — like disability justice advocate and organizer Lydia X. Z. Brown's "Rebel — Don't Be Palatable: Resisting Co-optation and Fighting for the World We Want" — about what disability justice means, how we work towards it, and where such movements must resist both the pressures of systemic attacks (such as the threatened cuts to coverage expanded by the Affordable Care Act) and internal gatekeeping and horizontal oppression (such as a community member being silenced due to an unpopular or uninformed opinion). There are essays that involve the work of teaching towards a better future, such as community lawyer Talila A. Lewis's "the birth of resistance: courageous dreams, powerful nobodies & revolutionary madness" which opens with a creative classroom writing prompt: "The year is 2050. There are no prisons. What does justice look like?" And there are, too, personal meditations on what resistance looks like for people who don't always have the mobility or ability to march in the streets or confront their lawmakers in person, as Ojibwe writer Mari Kurisato explains:
"My resistance comes from who I am as a Native and as an LGBTQIA woman. Instinctively, the first step is reaching out and making connections across social media and MMO [massively multiplayer online] games, the only places where my social anxiety lets me interact with people on any meaningful level."
The authors of these essays mostly have a clear activist bent, and are working, lauded, active people; they are gracious, vivid parts of society. Editor Alice Wong demonstrates her own commitments in the diversity of these writers' lived experiences: they are people of color and Native folk, they encompass the LGBTQIA+ spectrum, they come from different class backgrounds, and their disabilities range widely. They are also incredibly hopeful: Their commitment to disability justice comes despite many being multiply marginalized. Artist and poet Noemi Martinez, who is queer, chronically ill, and a first generation American, writes that "Not all communities are behind me and my varied identities, but I defend, fight, and work for the rights of the members of all my communities." It cannot be easy to fight for those who oppress parts of you, and yet this is part of Martinez's commitment.
While people with disabilities have long been subjected to serve as "inspirations" for the non-disabled, this anthology's purpose is not to succumb to this gaze, even though its authors' drive, creativity, and true commitment to justice and reform is apparent. Instead, these essays are meant to spur disabled and non-disabled people alike into action, to remind us that even if we can't see the end result, it is the fight for equality and better conditions for us all that is worth it. As activist and MFA student Aleksei Valentin writes:
"Inspiration doesn't come first. Even hope doesn't come first. Action comes first. As we act, as we speak, as we resist, we find our inspiration, our hope, that which helps us inspire others and keep moving forward, no matter the setbacks and no matter the defeats."
Ilana Masad is an Israeli American fiction writer, critic and founder/host of the podcast The Other Stories. Her debut novel, All My Mother's Lovers, is forthcoming from Dutton in 2020.