Against Being Disappeared: On Disability Culture, “Inclusion,” and Community

Introduction to the Second 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)

Historically, disabled people have been excluded from participation in society. Disabled children were educated in separate schools from the nondisabled, if educated at all. Physical and attitudinal barriers excluded the disabled from a wide range of activities, including employment, transportation, and culture. Our history was unwritten. Even when “inclusion” became a hot topic in academia and the arts, disability was excluded.

In 2002, when I first lived in Japan, a main issue for the disabled was “inclusion” in “mainstream” schools. When I first arrived in Germany in 2013, a similar “inclusion” debate about “mainstreaming” disabled children in schools was evolving. While this issue continues to dominate in education, it has now migrated to arts and culture, with some societies being more “inclusive” than others. 

But increasingly I’ve come to distrust “inclusion.” Inclusion connotes that there are people who hold the power to include. Most often these gatekeepers are nondisabled. Inclusion seems like charity. The very idea of inclusion seems excluding

Last June, interdisciplinary artist Perel and I collaborated on a virtual version of Life (Un)Worthy of Life: A Queer Dis/Crip Talk Show, Season 3, Episode 1: Chicago and on the Zoom Ramp of the Universe. We knew we did not want simply to transfer what we had done on stage in Berlin and Hamburg to the virtual realm. So, we re-imagined the project with Carrie Sandahl, director of Chicago’s Bodies of Work. Instead of a live performance in Chicago, we focused on videoing a discussion with 11 Chicago-based disability artists, scholars, and activists about Aktion T4, the Nazi program that mass murdered disabled people, a main subject of the piece. 

We met with “the 11,” as Perel and I called them, one Sunday afternoon via Zoom, recorded our discussion and then edited it into a 35-minute video, which we then premiered online. Both the Zoom conversation and the online premiere had access features including American Sign Language (ASL) interpretation, captioning, and self-description. 

Perel and I realized the tenor of the conversation we had with “the 11” was remarkably different from the discussions that had developed when the show was presented live in Germany. Yes, “the 11” were a diverse bunch of Americans, which had something to do with the difference from what transpired with German audiences. But what most resonated was that all of us—Perel, Carrie, me, as well as “the 11”—were disabled. Though the audience for the video was both disabled and nondisabled, the creation of the piece itself was disability-centric.

After decades of being “included” on many panels and in many events where our “inclusion” was tokenism, and in which disability often seemed an afterthought (even for events that were focused on “inclusion”), this was a huge relief. This time, because we were all disabled, it felt, and was, different. 

When I received the drafts of the essays for this second cohort of “Disability Futures in the Arts,” I was pleased the writers and artists I asked to be part of this cohort focused their essays on disability-centric work. Each essay focuses on a specific work or challenge, which has its root in disability/Deaf aesthetics. 

Film, television, and the stage still exclude disabled actors (despite some progress, the casting of nondisabled actors for disabled roles continues), and work by nondisabled writers writing about disability still gets more attention than writing by disabled writers. As a counterpoint, the essays in this second cohort of “Disability Futures in the Arts” is both a personal and collective record of the work of Pelenakeke Brown, Calvin Seretle Ratladi, Elsa Sjunneson, Syrus Marcus Ware, and Meg Day. These essays, and the work written about, redefine inclusion. This cohort makes inclusion, as it is usually understood, obsolete.

In “Rotations: Crips and Care During Covid-19,” Pelenakeke Brown tells us about Rotations, a project rooted in “our relationship to technology” forged during the pandemic. Brown writes, “Rotations grew from a longing for home (the one I had established as an adult), crip kinship, knowledge sharing, and wanting to create our own space for crips in the digital world.” This project, which Brown co-founded with Yo-Yo Lin, shows the importance of true community, not only foregrounding disabled artists but also showing a way forward for cultural care.

Calvin Seretle Ratladi takes us into the mines of South Africa in “A Hole in Waiting: Delineating Embodiment into Performance.” And in doing so, he links apartheid— perhaps the most exclusionary political system—with the body. Ratladi writes, “The term ‘apartheid’ has a significant legacy that is directly linked with the spatial landscape of South Africa and racial segregation. As a theatre-maker, I contemplate much around the apartheid system as a political and social hole that has left a mark both emotionally and physically, and which poses fundamental questions in our bodies.” In reading Ratladi’s essay on the roots of his theater piece A Hole in Waiting, I thought of the homonym of hole/whole. I began to relate Ratladi’s quest in making theater to the transformation of a hole in our ecosystem into wholeness. 

Wholeness is not specifically mentioned by Elsa Sjunneson in her “Working for Exposure: The Dangerous Cost of Memoir Writing.” But when writing about her recently published Being Seen: One Deafblind Woman’s Fight to End Ableism, Sjunneson grapples with the cost of publicly putting our whole selves on the line. She mines the internal and external conflicts of exposure. “Memoirs are not safe spaces,” she tells us. “They are vulnerable because we have to tear out pages of our own memories to write them—but I think disabled memoirs are especially vulnerable because of the ways in which disabled stories get used by the nondisabled public.” By framing her story with the Japanese myth of The Crane Wife, Sjunneson adds both an intercultural and intimate undercurrent to her essay. She shows the sacrifices of exposure run both wide and deep. 

Syrus Marcus Ware highlights the importance—and primacy—of community. Ware writes about “Crip Your World,” a project of PDA: Performance. Disability. Art., “an artistic collective focused on the art of disabled people of colour,” he founded in collaboration with Leah Lakshmi Piepzna-Samarasinha. In “Performance. Disability. Art.: Public Celebrations of Love, Creativity, and Disability,” Ware writes, “Together, we wanted to create something new—an arts collective that focused on the contemporary production of racialized disabled people—in ways that were supportive and embracing of ‘crip ways of working.’” With “Crip Your World,” PDA realized its vision: “Crip Your World helped to create a (however fleeting) space to be free together, to find power in difference, and to feel a sense of both self-determination and community.”

Meg Day’s “Unfit to Print: Refusing the Page in Deaf Poetics” can be read as a Deaf poet’s quest to find community external to the printed page. Day writes, “As a Deaf poet writing in English, I have long tried to get paper to do what it won’t: accommodate me.” Day asks: “Did some other Deaf poet precede me? Probably. The ableism of publishing often prevents us from knowing, much less having, a recognizable lineage. I’d only ever seen ASL in visual art, performance, and dance…. The moments in my artistic life where I feel I have succeeded most in communicating genuinely have never occurred on paper.” Day deepens the idea of  “inclusion”: “DeafBlind poet and essayist John Lee Clark writes in his essay ‘Against Access,’ that accommodation via access is perhaps the lowest bar, & part of a larger, necessary conversation about inclusion & consent. When the nondisabled world—or nondisabled poetics—becomes concerned with making things accessible, ‘The arrogance is astounding. Why is it always about them? Why is it about their including or not including us? Why is it never about us and whether or not we include them?’”

Together, these essays ask: Does community and having an audience beyond one’s community need be exclusive of each other? Does the fulfillment of our disabled visions need to be ephemeral? Syrus Marcus Ware reminds us: “we are still doing this work in a disabling world, and these artistic interventions seem essential, precious, and yet also temporary and prone to disappearing.”

It is my vision that “Disability Futures in the Arts” helps to connect various intersectional disabled communities and to counter disability culture’s tendency to be disappeared. 

“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 15, Issue 4 – Winter 2021

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 JapanDesert Walking, and Anesthesia. His work has appeared in many places including The New York TimesGrantaThe Believer, Evergreen ReviewLos 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. In 2021, he was a Heinrich Böll Foundation and Cultural Vistas DAICOR Fellow for transatlantic diverse and inclusive public remembrance. His current work-in-progress is Stumbling over History: Disability and the Holocaust, excerpts of which are featured in his video series What Happened Here in the Summer of 1940? He is pleased to be a Special Guest Editor for Wordgathering (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.