In Which Our Names Do Appear: Our Disabled Bodies and the Body’s World

Introduction to the Third Cohort of “Disability Futures in the Arts”

by Kenny Fries

(listen to this introduction, read by its author, Kenny Fries, the series’ Special Guest Editor)

We are, I am, you are
by cowardice or courage
the one who find our way
back to this scene
carrying a knife, a camera
a book of myths
in which
our names do not appear.

—Adrienne Rich, “Diving into the Wreck”

As an undergraduate, when I first encountered the poems of Adrienne Rich, I did not know she was disabled. It wasn’t until I was at a reading she gave in the Bay Area in the mid-1980s, that I realized Rich was disabled. When I returned to what she wrote in “Contradictions: Tracking Poems,” I then read it with a new understanding that these words were not just a metaphor but also the embodied words of a disabled poet:

The problem, unstated till now, is how
to live in a damaged body in a world where pain is meant to be gagged
uncured        ungrieved over       The problem is
to connect, without hysteria, the pain
of any one’s body with the pain of the body’s world
For it is the body’s world they are trying to destroy for ever
The best world is the body’s world
Filled with creatures     filled with dread
misshapen so yet     the best we have
our raft among the abstract worlds
and how I longed to live on this earth
walking her boundaries       never counting the cost

My personal relationship with Rich began when I inquired about using this part of Contradictions: Tracking Poems in Staring Back: The Disability Experience from the Inside Out, the anthology of U.S. disabled writers writing about disability, which I was then editing for Plume.

I often return to Rich’s words, and did so again as I put together this third, and final, cohort of essays for “Disability Futures in the Arts.”
What strikes me about this cohort is how each essay tells a personal story but, as Rich wrote, also connects one’s body with the world in which our bodies live. As these essays attest, though there are challenges presented by our disabled bodies, what most challenges us as disabled artists and writers is the societies in which we live.

In “Love Letter to London,” sculptor and artist Emilie Louise Gossiaux writes intimately about the profound influence her relationship with London, her guide dog, has on her work and in her life. But at the same time she also writes about how “During the start of the coronavirus pandemic, it was emotionally painful to read about the way disabled people were receiving less care, and were viewed as expendable the way thousands of livestock animals were slaughtered because American meatpacking factories were shut down. I was reminded of the time someone I was close to dehumanized me by comparing me to a dog, needing to be walked and cared for by someone everyday because of my disability. I thought of all the times I had to face discrimination for traveling with a dog, being denied access into restaurants, taxis, and shops, which is always so infuriating.”

Similarly, in “Bipolar Artist Reflections,” TJ Cuthand powerfully writes about how bipolar experiences have affected both his life and work. Cuthand limns the challenges posed by the medicalization and hospitalizations he experienced: “it was a highly adversarial relationship to psychiatry that ruined my trust in doctors for a very long time. I’d been in four-point restraints for wanting to use the phone during nap time, got locked in my room once because the orderlies were pissed at me. I never knew what they had against me, if it was because I was an obvious dyke (this was pre-my coming out as trans) or because I was Indigenous. I also think they had an adversarial relationship to all the patients.”

Brazilian artist and performer Carolina Teixeira, in “Prosthetic Existences: Disability and Art as a Resistance Practice,” writes of “the constant demand for activism” because of the ableism in her country. She asks: “What art can my body generate if it can only rely on state aid? What policies does my art breathe and exhale from my experiences bled into the body? I have sought to create between gaps, infiltrating myself as part of society that does not want to acknowledge itself as whole, or with a project of an ‘artist’ that simply must conform to the will of the art systems.”

In “More Human: Mental Heath and Art in Indonesia and Beyond,” artist Hana Madness writes about her experience of mental health in Indonesia. She emphasizes that “Lifting up people with lived experience is not just about healing; it’s about building solidarity with other marginalized communities and realizing the fact that we exist and we deserve to be a part of this world. People with lived experience happen to be some of the people who suffer the most because of our inability to function optimally in society and our needs are always considered as an exception by the existing system.”

This cohort, and the series, ends with musicians Tommy Carroll and Stephanie Alma’s “Souls above Water: Building a Scene for Disabled Musicians in Chicago,” a jointly written essay in two voices, which traces the beginnings of their practices, as well as how they found each other. Tommy Carroll writes about the tensions of “being a bold disabled artist who actively championed disability culture in my music,” while Stephanie Alma writes that she doesn’t “get the chance to explain myself and default[s] to saying I am a self-taught singer,” despite knowing “I am not ‘self’-taught because of all I learned from church and the Mexican singers I’ve listened to throughout my life.”

In concluding their essay, the two Chicago-based musicians write in one voice: “We want to cultivate spaces that allow people in our community to exercise multifaceted ways of thought and action, because accessibility means something different for everyone and for every type of event. We are working to build systems and networks that solidify paths to artistic development and increased worth for disabled artists.”

I can’t think of a more apt description of what I hope “Disability Futures in the Arts” can mean for an intersectional and international community of disabled artists.

In my initial introduction to the series, I wrote: “I aim to create a space where disabled artists are central” and in the introduction to the second cohort I put forth my hope that “Disability Futures in the Arts” will help “to connect various intersectional disabled communities and to counter disability culture’s tendency to be disappeared.”

As powerful as each artist’s individual story is, it is the sum of the fifteen essays written by sixteen disabled artists that is a true testament to the flourishing and vital importance of disability arts. It is with profound thanks to the cohorts of artists, the staff at Wordgathering, and funding from the Canada Council for the Arts, that has made this work of disabled artists more visible, providing a resource for all artists, but especially for disabled artists.

Ultimately, these essays show how disability, when named, with all its pains and joys, with its oppressions and expressions, is indispensable not only to the work of disabled artists, but also to all of our lives.

“Disability Futures in the Arts” is supported by the Canada Council for the Arts/Conseil des arts du Canada.Logo for the Canada Council for the Arts/onseil des arts du Canada

Back to Top of Page | Back to Disability Futures in the Arts | Back to Volume 16, Issue 4 – Winter 2022

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. His books of poems include In the Gardens of Japan, Desert Walking, and Anesthesia. Twice a Fulbright Scholar (Japan and Germany), he was a Rockefeller Foundation Arts and Literary Arts Fellow, a Creative Arts Fellow of the Japan/US Friendship Commission and National Endowment for the Arts, and a Cultural Vistas/Heinrich Böll Foundation DAICOR Fellow in diverse and inclusive transatlantic public remembrance. His current work-in-progress is Stumbling over History: Disability and the Holocaust, excerpts of which have appeared in The New York Times, The Believer, and Craft, as well as form the basis for his video series What Happened Here in the Summer of 1940? He is a 2022 Ford Foundation/Mellon Foundation Disability Futures Fellow.