(listen to this series introduction, read by the author—and the series’ special guest editor)
For the past year, I have been collaborating with interdisciplinary artist Perel on Life (Un)Worthy of Life, which connects Perel’s strands of intersectional Jewish, queer, and disabled history. In the recent performance at Kampnagel, in Hamburg, Germany, Perel added a section of the show in which they confront an empty chair. Perel says, “The empty chair symbolizes the absence of disabled lives, not only the loss of physical lives, but the loss of disabled stories and voices throughout history.”
As Perel and I put this history on stage, and as I write about Aktion T4, the Nazi program that mass murdered disabled people, in my forthcoming book Stumbling Over History: Disability and the Holocaust, we know disabled people live “worthy” lives. Or, to counteract current coronavirus parlance, disabled people are not merely living with “underlying conditions.” We are far more than only vulnerable.
This morning, I was reminded what disabled artists are up against. In “25 Best Films of the 21st Century So Far,” New York Times film critic A. O. Scott names, as 3rd best, Clint Eastwood’s Oscar-winning Million Dollar Baby, in which Maggie Fitzgerald, a boxer who, after being disabled, wants her trainer to kill her. The manager complies. There is evidence that F.X. Toole, on whose stories the film is based, knew about Katie Dallam, an actual female boxer with a similar history to the fictional Maggie Fitzgerald. But Dallam is still alive. Once again, we are in the literal narrative dead end that awaits most disabled characters in our culture, a narrative firmly rooted in the medical model of disability in which the choices are to kill or cure disability.
This morning’s Times article is surely not the only reminder, and unfortunately surely not the last. There are few, if any, “mainstream” critics who can provide the necessary historical, sociopolitical, and cultural context to the important work of disabled artists. An example: In 2013, in a review of Rare, a theater piece by nondisabled Canadian playwright Judith Thompson performed by actors with Down Syndrome, Globe and Mail critic J. Kelly Nestruck wrote he could not review Rare in “a standard way” because of the casting of “nonprofessional” actors. However, “standard” reviews were written for previous Thompson plays that employed “nonprofessional actors.” Obviously, Nestruck did not know the history of disabled performers. He did not know of San Francisco Bay Area’s Sins Invalid or Zurich’s Theater Hora.
And this is not a one-off situation, and relevant not only to critics. Major nondisabled artists, even those who started on the fringe, are unaware of how the disability content in their work continues not only to misrepresent disability but also reinscribes dangerous stereotypes. Just two examples: In Taylor Mac’s A 24-Decade History of Popular Music, Mac instructs the audience to don blindfolds to simulate blindness, perpetuating long held myths of blindness; and in a 2019 Deutsche Oper Berlin production of Alexander von Zemlinsky’s rarely produced Der Zwerg (The Dwarf ), director Tobias Kratzer cast a little person as a non-singing doppelgänger to the nondisabled tenor who sings the role. At the production’s end the nondisabled singer kills his disabled counterpart. Both Mac and Kratzer are either unaware that disability is more than a metaphor or, if they are aware, are cavalier about how they employ such metaphors in their work. I have not come across any critical response to these productions that unpacks or questions what these artists are saying about disabled lives.
None of the above-mentioned artists—and this is just a cursory list—seem to know much, if anything, about the rich history of Disability Arts. Even many disabled artists do not know this history. Carrie Sandahl, Director of the Program on Disability Art, Culture and Humanities at the University of Illinois at Chicago, and Director of Bodies of Work: A Network of Disability Art and Culture, says, “Many disabled artists I encounter are not aware of the complexity of what has come before.”
Sandahl also points out that because of lack of education and training opportunities for disabled artists, many disabled artists often did not have, and still do not have, access to the wider cultural conversation inside and outside Disability Arts. She adds, “Once they know this they can move to work that really interests them, which is usually not the ‘what happened to you’ story.’”
An example: too few know about the importance of the Contemporary Chautauqua on disability and performance first held at the Mark Taper Forum in 1994. Vicki Lewis, who directed the Taper’s Other Voices program for disabled playwrights, invited disabled writers and artists from across the U.S. to gather in Los Angeles. I was fortunate to be among the invited artists, which also included Anne Finger, Susan R. Nussbaum, Lynn Manning, and Ayofemi Folayan. Lewis’s brilliant idea was to include disability historian Paul K. Longmore and activist Douglas Martin, who provided a wider context to our work. The Chautauqua led to my editing Staring Back: The Disability Experience from the Inside Out, which was the first multi-genre anthology of U.S. disabled writers to be published by a mainstream press.
What Sandahl says speaks to why in 2017 I created the Fries Test for disability representation in our culture. And this is a main reason why I am curating and editing “Disability Futures in the Arts,” this series of essays to be published over three years in Wordgathering.
In “The Crip Couture Manifesto,” Chun-shan (Sandie) Yi writes, “Crip Couture makers follow Crip time: the design ideas do not arrive based on the production speed required by capitalism.” Thus, Yi sets the stage for the series by defining an alternative value system that can be promulgated by disabled artists.
Travis Chi Wing Lau reaches back to the 18th century, which might surprise readers. In “Refusing Recovery in ‘The Palace of Disease’,” he describes writing a dissertation on vaccination, when he found himself “frequently returning to eighteenth-century life-writing because of how it provided models for narrating the disorientation of illness and disability. As a poet, I wanted to know what poetic form could do with the seemingly formless states of pain and cognitive difference that have increasingly defined my experience of spinal curvature.” That he finds “crip poetics before crip is supposed to exist” is a revelation.
Sandra Alland also reaches back, and in doing so moves the possibilities of film forward. In “Remembering the Now: Documentation and Invention in Queer and Trans Disabled Film,” Alland connects the past, the present, and the future, one of the prime goals for which this series, as a whole, aims: “Instead of living in the moment or dreaming the future, marginalized artists have to write our own history as it’s happening. If we don’t want our communities to be forgotten, we face the burden of simultaneous creation and documentation, often in already-challenging circumstances.”
“I failed where they focused and I succeeded in secret,” writes Jerron Herman as he repurposes the history of physical education in his practice. In “Definition: A Praxis,” he gives us an intimate look at the development of two of his dance pieces, while at the same time challenging how he and his work has been perceived: “I’ve been deemed an ‘activist’ merely because of my identities of being Black and Disabled.” But he also knows, “Across marginal identities, whether historically or contemporarily displaced, we desire defense. There is no better defense than occupation, than habitation, and it’s here that I find purpose or drive.”
In “Aesthetics of Horizontal Access: An Ode to Lying Down in Art Spaces,” dramaturge Noa Winter literally takes a position. Winter’s essay shows how lying down, for both audience and artist, not only relates to access and anti-ableist practice but also to transformative creative work, as well as to how “choosing to create work around rest is a phenomenon not exclusive to disabled and chronically-ill artists. It’s rather a link between the experiences of different marginalized communities.”
Disability Arts does not have a received canon. And, as I write above, there are few critics well versed in disability aesthetics. This series will look at who and what disabled artists themselves look to, thus creating a legacy.
In this and future cohorts, I focus on disabled artists in a generation younger than myself. I aim to create a space where disabled artists are central, where we can talk among ourselves. At the same time, “Disability Futures in the Arts” creates a place where nondisabled artists interested in Disability Arts, as well as critics who are not usually exposed to Disability Arts, can turn to and learn about the relevance of this work to their respective fields.
As this first cohort of essays clearly shows, there is much work that has been created, is being created, and will be created by disabled artists that does not conform to the still omnipresent deleterious misrepresentation of disabled lives. These essays by profound practitioners draw on varied histories and role models as they create their groundbreaking work.
“Disability Futures in the Arts” is supported by the Canada Council for the Arts/Conseil des arts du Canada.
About the Author
Kenny Fries is the author of In the Province of the Gods (Creative Capital literature award); The History of My Shoes and the Evolution of Darwin’s Theory (Outstanding Book Award, Gustavus Myers Center for the Study of Bigotry and Human Rights); and Body, Remember: A Memoir. He edited Staring Back: The Disability Experience from the Inside Out and was commissioned by Houston Grand Opera to write the libretto for The Memory Stone. His books of poems include In the Gardens of Japan, Desert Walking, and Anesthesia. His work has appeared in many places including The New York Times, Granta, The Believer, Evergreen Review, Los Angeles Review of Books, and Lit/Hub. He wrote the Disability Beat column for How We Get to Next, and created the Fries Test for disability in literature and film. Twice a Fulbright Scholar (Japan and Germany), he was a Creative Arts Fellow of the Japan/US Friendship Commission and the National Endowment for the Arts, received a Rockefeller Foundation Bellagio Center Arts and Literary Arts Fellowship, and grants from the DAAD (German Academic Exchange), Canada Council for the Arts, Ontario Arts Council, and Toronto Arts Council. He teaches in the MFA in Creative Writing Program at Goddard College. He is pleased to join Wordgathering as Special Guest Editor (2020 – 2023) during which he will curate, edit, and introduce “Disability Futures in the Arts,” a series of 15 essays by disabled writers and artists focusing on role models and disability representation, a project funded by the Canada Council for the Arts.