Thirty years after the passage of the Americans with Disabilities Act, the importance of disabled voices could not be more crucial. Because of Covid-19, during this time of great personal, political, and cultural upheaval, those of us who live with disabilities have had to, yet again, expend considerable energy and resources to assert the value of our lives. We’ve had to defend our rights—including our right to live—as we made known the exclusivity of safety protocols, as well as the danger of crisis triage protocols, which, if enacted in certain states, would allow the disabled not only to be denied care but to be stripped of their own life-supporting ventilators needed to survive.
Thankfully, because of the ADA, and the warnings by disability activists and organizations, the Office of Civil Rights at the US Department of Health and Human Services deemed discrimination in crisis triage protocols unlawful. Still, on June 11, Michael Hickson, a disabled Black man in Texas, was refused treatment and died from Covid-19.
Despite the essential need for disabled writers to transform the understanding of disability and disabled lives, in the thirty years since the ADA’s passage, in literary circles, there remains a lack of representation of disabled people in gatekeeper positions and in our literature’s pages. There are an estimated 61 million people with disabilities in the US. But according to Lee & Low’s 2019 “Diversity in Publishing Baseline Survey,” 89 percent of those working in publishing are nondisabled. I would be hard-pressed to name an editor at a commercial publisher or a leading book critic who identifies as disabled.
“In 2017, I created the Fries Test for representation of disability in fiction and film, akin to the Bechdel Test for women. Soon after, disabled writer Nicola Griffith reported her social media call for novels that passed the test garnered fifty-five titles. ‘According to Stanford Literary Lab there are about five million novels extant in English,’ Griffith wrote in The New York Times. She calculated that ‘to proportionally represent the experience and reality of the American population, the number of novels on my list should be 1,250,000. One and a quarter million. And we have fifty.’”
Books written by award-winning disabled writers are rarely reviewed in mainstream publications. But nondisabled writers writing about a disabled sibling, or a parent writing about a disabled child, garner attention. Nondisabled writers still use disability as a metaphor rather than a lived experience. As I tell my MFA creative writing students, a scar must actually be a scar before it can be a metaphor.
When a disability-focused book does get noticed, mainstream critics are not equipped to put it into an historical or cultural context. Take Anthony Doerr’s Pulitzer Prize–winning All the Light We Cannot See. Stephen Kuusisto, author of Planet of the Blind, describes Doerr’s novel as employing “the familiar trope of an inspiring disabled person—in this case a teen girl who’s blind. Doerr fails to create a realistic blind character because she’s a tabula rasa—a slate on which he can inscribe both a compensatory intelligence—extraordinary sensitivity in the manner of an ancient blind seer, with profound dependence.” Critics who are not well versed in how disability has historically been misrepresented in literature missed this. This has a deleterious effect on how disability is still misunderstood.
There are currently no books by writers who identify as disabled that are part of the Big Read, a community reading program of the National Endowment for the Arts, despite its criteria that includes diversity of authors and a “focus on expanding the range of voices” in the Big Read library. Few would allow grants panels to lack representation of women or people of color, but the disabled continue to lack a seat at the table when grants are decided. In 1999, when I was awarded the Creative Capital literature award, I was the only disabled-identified artist in the room. Twenty years later, in 2019, when I was a mentor to Creative Capital awardees, there were only three disabled-identified artists among the grantees. Last year, when I was a Rockefeller Foundation Bellagio Center Arts and Literary Arts Fellow, there were many women and racially diverse fellows; I was the only disabled person in residence.
The last iteration of Best American Essays and Best American Short Stories did not include one disability-focused piece written by a disabled writer. As far as I know, there has never been a disabled-identified writer chosen to edit this prestigious series. The annual AWP conference has been consistently criticized not only for its lack of physical access but also for the lack of representation of disabled writers on its main stage. A 2018 open letter by The Disabled and Deaf Uprising on the VIDA reported the AWP response: “There just hasn’t been a disability moment yet.”
During last month’s queer pride celebrations, I scanned lists of events of writers and could find few, if any, disabled queer writers who had been invited to participate. Because events were virtual, it could have been easier for many disabled writers to be included.
Yes, there has been some limited progress. In recent years, poets such as Ilya Kaminsky and Molly McCully Brown have been justly rewarded for their important disability-focused work. Zoeglossia, a new organization “seeking to pioneer a new, inclusive space for poets with disabilities” held its first fellows retreat in 2019. Nonfiction titles by disabled writers such as Porochista Khakpour and Haben Girma have been lauded. But fiction by disabled writers published by commercial presses is still very difficult to find.
In 2017, I created the Fries Test for representation of disability in fiction and film, akin to the Bechdel Test for women. Soon after, disabled writer Nicola Griffith reported her social media call for novels that passed the test garnered fifty-five titles. “According to Stanford Literary Lab there are about five million novels extant in English,” Griffith wrote in The New York Times. She calculated that “to proportionally represent the experience and reality of the American population, the number of novels on my list should be 1,250,000. One and a quarter million. And we have fifty.” Griffith, whose So Lucky was published by the MCD imprint at Farrar, Straus, and Giroux, called this “a shocking result.”
In 2016, Darren Walker, president of the Ford Foundation, published an open letter about his awakening to the fact that at the time the foundation did “not have a person with visible disabilities on our leadership team; takes no affirmative effort to hire people with disabilities; does not consider them in our strategy; and does not even provide those with physical disabilities with adequate access to our website, events, social media, or building.”
Walker’s “first question was: How had this happened—how could we possibly miss this? The answer, simply put, is power, privilege, and ignorance—each of which multiplies the prejudicial effects of the other.” He did not want to “initiate a new program on disabilities” but rather to “integrate an inclusive perspective across” all programs. “As I’ve come to learn, the mantra of the disability community is ‘Nothing about us, without us’—words that ring true across our work.”
Walker took “immediate, practical action.” He wanted the renovation of the foundation headquarters to go beyond the requirements of the ADA. He offered other steps organizations could take: “For some, this might mean reconsidering the makeup of a board or leadership team—or reexamining recruiting and hiring practices that may unintentionally exclude certain people. For others, it might mean reassessing a program based on the context that surrounds it, or reflecting on the language we use when we talk about the people we work with. Or it might mean asking for uncomfortable comments and criticism, and seizing them as an opportunity for growth.”
Sheila Black, writer, arts administrator, editor of Beauty is a Verb: The New Poetry of Disability and co-founder of Zoeglossia says, “When we are not part of the diversity discussion—it merely serves to reinforce the status of people with disabilities as invisible and poor. I think invisibility is the biggest thing.” And this takes its toll. Black didn’t “come out” publicly as a person with a disability until she was forty. She says, “I just think there is a long long history of erasing us—even to ourselves.”
Role models are important, so a vital answer could be in education. For over twenty-five years, I’ve been the only disabled-identified faculty member in the MFA creative writing program where I teach. A few years ago, I worked with a creative writing grad student who had a brain injury. She had a singular and evocative way of seeing things that related directly to her disability. I encouraged her to write about both what she thought and how she thought. “I can’t do that,” she told me. “I don’t know how to be disabled.”
But during her MFA studies she did write a book of poems that proved she could do what she said she could not do. A fellow faculty member remarked, “She wrote a book which is written in a voice I had never read before.”
Before her graduation ceremony, my student asked to talk with me. She wanted to know what might be her next steps in being a disabled writer in the world. She pointedly asked, “How can I be you?” As personally moved as I was, I thought about the countless young people with disabilities who cannot find role models in our institutions and in our books.