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Twenty years ago, I edited Staring Back: The Disability Experience from the Inside Out, the first commercially published multi-genre anthology of writers with disabilities writing about disability. The anthology was published by Plume. In the introduction, I wrote: “Throughout history, people with disabilities have been stared out. Now, here in these pages — in literature of inventive form, at times harrowingly funny, at times provocatively wise — writers with disabilities affirm our lives by putting the world on notice that we are staring back.”
In the large scheme of things, not much has changed in how disability is represented in our culture since I edited Staring Back. In most popular culture disability continues to be defined by the nondisabled gaze. Movies, which have the most cultural visibility and impact, continue to spread stereotypical, and harmful, depictions of disability.
Perhaps the best, or should I say worst, example might be last year’s Me Before You, based on a UK romance novel, in which the young Louisa becomes caregiver for Will, a wealthy banker recently paralyzed from a car accident. At first, Louisa rescues Will from his bitterness. They fall in love. Still, Will decides he cannot bear living a life with a disability and decides to kill himself, leaving Louisa a considerable inheritance.
This typical narrative promulgates disability as something from which the nondisabled learns and profits; the disabled character dies. Through such depictions we learn little about the actual life lived with a disability, but a lot about how our culture uses disability for its own purposes and disvalues disabled lives.
Last year, Carrie Sandahl, who heads the Program on Disability Art, Culture, and Humanities at the University of Illinois at Chicago, and other Chicago cohorts, ran a successful Kickstarter campaign to fund the completion of Code of the Freaks, a documentary that looks at how movies have misrepresented, and continue to misrepresent, disability.
And far from the Hollywood gloss, writers with disabilities steadily, if sometimes not commercially, have been pushing back against the mainstream depictions of disability. In 2013, Susan R. Nussbaum, whose one-woman play Mishuganismo appeared in Staring Back, published Good Kings Bad Kings, written in the voices of a culturally diverse group of teenagers who live in an institution for juveniles with disabilities. The novel won the PEN/Bellwether Prize for Socially Engaged Fiction and was published to acclaim by Algonquin Books. The book was chosen as the One Book Villanova selection, and distributed to all students at Villanova University while an academic-year-long series of events were held focusing on the themes of Nussbaum’s novel.
Earlier this year, Cinco Puntos Press published The Right Way to be Crippled and Naked: The Fiction of Disability, a follow-up to its groundbreaking Beauty is a Verb: The New Disability Poetry. These anthologies included work by some of the writers included in Staring Back, (Larry Eigner, Tom Andrews, Anne Finger, Stephen Kuusisto, Raymond Luczak) and a host of others whose work deserves a larger readership. Cinco Puntos will continue to publish work by writers with disabilities when it brings out A Woman in Bed, Anne Finger’s new novel in 2018.
Recently, young adult writer Sherri L. Smith was about to teach a class on writing and empathy. She asked me if there was something similar to The Bechdel Test for disability. The Bechdel Test, named for well-known lesbian cartoonist Alison Bechdel, asks: Does a work have at least two women in it? Do the women talk to each other? And, if they talk to each other, do they talk about something other than a man?
I thought a bit about before telling Sherri about what she now calls The Fries Test: Does a work have more than one disabled character? Do the disabled characters have their own narrative purpose other than the education and profit of a nondisabled character? Is the character’s disability not eradicated either by curing or killing?
When Sherri asked me for examples of fictional work that passed The Fries Test, I could think of Nussbaum’s Good Kings Bad Kings, Katherine Dunn’s Geek Love, and not many others. Clearly, despite the work writers with disabilities are doing, we have a long way to go in overturning the dominant narratives that keep disability on the margins and being defined by the needs of the nondisabled.
Kenny Fries is the author of the recently published In the Province of the Gods, which received the Creative Capital literature grant. His other work includes Body, Remember: A Memoir and The History of My Shoes and the Evolution of Darwin’s Theory, winner of the Outstanding Book Award from the Gustavus Myers Center for the Study of Bigotry and Human Rights. He is the editor of Staring Back: The Disability Experience from the Inside Out and the author of the libretto for The Memory Stone, an opera commissioned by the Houston Grand Opera. His books of poems include Anesthesia, Desert Walking, and In the Gardens of Japan. He teaches in the MFA in Creative Writing Program at Goddard College.