Alice Sheppard’s <Where Good Souls Fear>, Performance Space New York, 2019. Photo: Mengwen Cao
Open Up
BY Madeline Charne

I wanna be with you everywhere (festival)
Performance Space New York
April 2019

“What does it mean to call a poem an adaptive device? ”

This line from Leah Lakshmi Piepzna-Samarasinha’s poem “Adaptive Device,” performed in a reading of her works, served as a protective specter, haunting and guarding I wanna be with you everywhere at Performance Space New York—a festival of poetry, dance, music, and theater created of, by, and for disabled artists. Piepzna-Samarasinha’s message of art as survival is a revelatory assertion of the power of poetry in the struggle for disability justice. For the disabled community—particularly the black, brown, Asian, and lgbtq disabled community—art is not supplemental: it is a crucial tool for justice, persistence, and independence.

The power of performance as a community-building and identity-affirming tool was ever present in this gathering and celebration. The event was organized as a collaboration between Performance Space, Arika (a uk-based political arts organization) and the Whitney Museum of American Art and was divided into four days, with twelve public performances at Performance Space and one day at the Whitney dedicated to an invite-only convening of disabled and non-disabled writers, curators, academics, artists, and cultural workers. The artists, organizers, interpreters, and audience for the festival came from across the United States and Canada and from across the artistic and disciplinary spectrum, but they were united in questioning how those of us who identify as disabled make and consume art and how we live within that identity. Over the course of the festival I heard artists wrestling with vital questions: What happens when a festival is organized around access? Or, when messiness is just a part of rigor? What happens when disability aesthetics is where the questions start, not where they end?

In 2010, Tobin Siebers published Disability Aesthetics, a book that changed the conversation around disability in the arts and whose reach could still be felt nine years later in every piece in this festival. Siebers examines not the exclusion of disabled bodies from discussions of aesthetics, but rather modern art’s “love affair with misshapen and twisted bodies, stunning variety of human forms, intense representation of traumatic injury and psychological alienation, and unyielding preoccupation with wounds and tormented flesh,” a trope extending from Picasso’s earliest works of proto-modernism all the way to the contemporary theater of director Romeo Castellucci.[1]  By making visible the longtime artistic preoccupation with disabled bodies, Siebers established disability as a critical framework that questions underlying definitions of aesthetic production and appreciation, positioning disability as an aesthetic. Disability aesthetics, as Siebers defined it and countless artists, philosophers, and theorists have elaborated, refuses to recognize the able body and its definition of beauty as the sole determiner of aesthetic value. The field of disability aesthetics embraces the beauty in that which seems (by traditional, ableist standards) to be broken and considers those things more, not less beautiful as a result of that “brokenness.”

I wanna be with you everywhere started from this framework with a celebration of how the disabled “bodymind”—a term used by many disability and trauma scholars to describe the relationship between mental and physical processes—creates art without regard for “normal.” Each dancer, poet, filmmaker, theater maker, musician, and community organizer in the festival brought their own body experience to the weekend; instead of attempting to conform or to perform ability, they were given space to create directly from a disability aesthetic. The results were purposefully messy, lovingly haphazard, and full of unadulterated joy.

In her solo dance-lecture piece, Where Good Souls Fear, Alice Sheppard, a New York based dancer, choreographer, and founder of the socially-oriented, interdisciplinary dance collective Kinetic Light, does not use her crutches and chair to try to imitate how able-bodied people move through a space. Instead she embraces each and every possible combination of movements her adaptive devices can execute—dragging, rolling, arching, scooting, pulling, and gliding through the space. Sheppard—perhaps the best-known of the artists featured—does not try to emulate “normal;” she finds the specific beauty in how her body interacts with the objects she moves with and the obstacles she encounters. Her crutches become extensions of her arms, her legs, they are crossed in front of her neck and held under her arms to push herself and her chair up into a forward bridge. She uses her wheelchair to propel her, to arch above herself like a shell as she moves on her stomach, to rock herself in seeming defiance of gravity as she tilts backwards onto the wheels. As she informs us in a lecture sequence within the dance piece, she thrives in her “excess.” Too often disabled people are asked to take up less space, to be less visible, less noticeable in their disability. Alice Sheppard rejects these ableist demands in her dancing and instead teaches her audience, abled and disabled alike, how to take up space—by refusing to contort or diminish her body to suit the demands placed upon it she shows us how to do the same.

Sheppard is not alone in finding beauty in the form of the disabled bodymind. From poet and activist Leah Lakshmi Piepzna-Samarasinha, who held her cane tucked under her arm as she performed her moving poetry, to interdisciplinary musician and writer Johanna Hedva’s confrontational expression of pain through noise music in Black Moon Lilith in Piesces in the 4th House, to DeafBlind poet John Lee Clark’s lyrical display of ProTactile poetry (a touch-based language used by the DeafBlind community), each artist in the festival embraced the ways in which disabilities contribute to their artistry. Five minutes into the solo theater piece Lover of Lower Creatures, radical political choreographer and performance artist neve (who uses the pronoun they), dances a transfer between their wheelchair and a stationary, wooden chair. The process is meticulously choreographed—a push on the chair, a slide forward, a shift of weight. As they transfer, a chorus of crickets, cicadas, and wind swells, turning into a steady, drumming beat that fills the air of the theater. Pushing onto their legs, neve begins to tremble. It begins with the seemingly natural movement of their leg as weight transfers between arm and foot, but soon the movement cascades, shifting from a tremble to a beat. NEVE stays balletic, quick, virtuosic in their movement as their leg vibrates, beating in time with the cicadas. Although the piece has uneven moments—a shadow-play scene drags on too long and their use of props feels incomplete—in this moment neve transforms impairment into art, embracing the sheer messiness of moving in disabled bodies while capturing the beauty that can arise from that mess. The bodies in this long weekend of performances sometimes shook, other times crawled, drooled, walked, rolled, or danced; they sang and signed and smiled and cried and they rested when they needed to. Each body (and mind) found its own pinnacle and the festival was rich in its embrace of these differences.

To me, it was particularly striking that the festival could accommodate these differences offstage as well as on. Frequently when theater and arts spaces decide to pay attention to disability, they do so from only one end: they take steps to bring disabled performers into their venues, or they make their spaces accessible to disabled audiences. But the producers and curators of I wanna be with you everywhere took the directive “by and for” seriously, embracing accessibility as closely as they did disability aesthetics on stage.

Accessibility—true accessibility—means so much more than mere compliance with the Americans with Disabilities Act. As art filmmaker Jordan Lord (who also uses the pronoun they) states in their profoundly intimate documentary film After…After…(Access), which premiered at the festival: “access is almost always a confrontation with a structure that is closed, but could be open.” Access is not just a ramp on stairs or a door widened to three-feet to allow for wheelchairs to pass. Access is about removing the barriers that prevent all but the bodies and minds that society has determined to be the norm from moving freely through the world. In After… After…(Access), Lord explores the issue of accessibility through the director’s attempts to gain access to filming their own open-heart surgery. As Lord contends with the complications of allowing surgeons access to their body, the film explores diverse meanings of access—from trying to make the film accessible to blind audiences by audio-describing each frame, to the historical etymology of the word with roots in fourteenth century theories of disease. Lord’s film ends as the director is rolled into surgery: Lord was not granted filming access after all and the irony of this closed door carries over into the final credits.

I wanna be with you everywhere embraced the open door of access in just about every aspect of the festival, and as a consequence, I have never felt more welcome in a space. Accessibility work started even before arrival, with tickets priced on a sliding scale from free to $25 to acknowledge the economic inequality that disabled people experience. A local travel fund, made possible by the Whitney Museum and Creative Scotland, was set up by the organizers to help reimburse mta transit fees, Access-a-Ride trips, and cab rides for those who could otherwise not attend. On arrival, I was greeted by a welcoming front-of-house team who immediately asked about my access needs—did I want audio-description headphones? Assisted Listening Service (als) devices? Earplugs, cushions for the seats, or a subpac (a device worn like a backpack that pulses sound through the body as vibration)? Although there were moments of access failure, such as when the live captioner fell woefully behind script or when the venue ran out of comfortable chairs, the lobby team remained available all weekend, finding ways to make the space work for everyone in attendance. For those too sick to attend or whose access needs could not be served, a livestream brought nearly all of the events into their beds, couches, and hospital rooms, and every day started out with a message: “Thank you to those who can’t make it today,” the organizers said, “and to those who can’t make it any day. We see you and we love you.”

The space was also set up to facilitate access. Held on the fourth floor of the newly renovated (and finally ada compliant) Performance Space New York, the festival made use of both of the organization’s theater spaces, with one serving as the performance venue—with plenty of wheelchair spaces and comfortable, padded chairs pulled up in front of the traditional black folding ones—and the other as a quiet space. (I would implore every performance venue in America to emulate.) Set up with low lighting, arm chairs, couches, rocking chairs, and actual beds, as well as coloring books, plants, and a huge collection of stim objects—from stones to scarves, balls, and putty for those who needed them to self-regulate—the space was one of the most comfortable I have ever seen in a theater.  The space was for all of us and we used it well and often, returning to it again and again between performances, on frequent breaks, and when we needed to step away or decompress. Unlike so many festivals organized at a tight clip, there was no expectation here of exhausting ourselves for the sake of Art Martyrdom. The festival was organized on “crip time,” a phrase used by disabled thinkers and writers to refer to the different temporality some disabled people use to move through the world. As scholar Alison Kafer puts it in her book Feminist, Queer, Crip: “Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.”[2] The festival set its clock to us.

But access extended beyond these accommodations into the performed works. Although every show was audio described, live captioned, and sign-language interpreted, some artists took advantage of these access elements and fully incorporated them into their pieces. It was in these hybrid works of art that I found the most revelatory joys: access not only as a way to ensure we all can experience art, but access as an art in and of itself.

The multisensory dance piece Nearly Sighted/unearthing the dark by capably daring movement artist Kayla Hamilton was a beautiful experiment in how to make dance, a primarily visual medium, accessible to a non-seeing audience by playing with the nuance of audio-descriptions. An extended piece with many distinct sections, it starts with Hamilton dancing in the dark, illuminated by a stick figure of neon lights that stretch up her torso, around her neck, and up and down each arm and leg. As she dances, two ensemble members seated with us in the audience serve as audio describers, narrating her motions: a woman speaks in near-anatomical terms (“hop, slash, spinal rotation. Supinating the foot to spiral into the floor”), while a man speaks his subjective account of her movement (“long neck with nappy strings growing out of it every which way. Pump that booty”). Neither is able to capture the totality of the dance we see, but in the way the descriptions bob and weave around each other, we get a fuller sense of Hamilton’s intent. The audio descriptions become more than an add-on for those who need them: they shape how all of us in the audience engage with this work.

In a poetic essay she did not perform this weekend, Leah Lakshmi Piepzna-Samarasinha writes: “when I think about access, I think about love.”[3] Piepzna-Samarasinha’s love is not romantic or familial—it is love as a radical act of solidarity and care. When I think of the work I saw in I wanna be with you everywhere, I think about the love that was granted to each and every one of us in the audience through the access we were given. Access to a space of potential in which physical and systemic barriers—from stairs to ableism—did not prevent this group of creative, enthusiastic creators from joining together to make something beautiful.

On Saturday night, as the finale, playwright and dancer Jerron Herman used his exuberant piece Relative to turn the stage into “the accessible club of our collective underground dreams.” DJ-ed by scholar and media artist Kevin Gotkin, the lights melted from blue to pink to purple in time with the music (slow enough to not affect those unable to be around strobe), and Herman danced. He danced alone and with us. He danced with those sitting in the black folding chairs that were brought out to the stage and with those whirling around the space in their wheelchairs. He danced with those who could fully break it down and with those of us who swayed supported by a hand on the chairs or on canes. For once, the dance floor was accessible to everyone. And that access? It was an act of love. And that dance, that music, these poems, those films, this art? It harkened back to the first day of the festival, when Piepzna-Samarasinha asked what it would mean to call a poem an adaptive device. Medical dictionaries say that an adaptive device is “any structure, design, instrument, contrivance, or equipment that enables a person with a disability to function independently.”[4] But in centering disability justice and aesthetics, the artists and organizers of I wanna be with you everywhere rejected the medicalization of disability. With their potent performances and expressive works, they demand we look beyond impairment and see disability as a socio-political and cultural force, one capable of redefining aesthetics beyond the disabled community and across disciplines. If an adaptive device is something that enables us to function independently, then the works performed in I wanna be with you everywhere might just be non-medicalized, justice-oriented adaptive devices—granting our disabled selves a space of reprieve, joy, independence, and survival.


[1] Tobin Siebers, Disability Aesthetics, (Ann Arbor: University of Michigan Press, 2010), 4.

[2] Alison Kafer, Feminist, Queer, Crip, (Bloomington: Indiana University Press, 2013), 26.

[3] Leah Lakshmi Piepzna-Samarasinha, Care Work: Dreaming Disability Justice, (Vancouver: Arsenal Pulp Press, 2018), 75.

[4] Mosby’s Medical Dictionary, 8th edition. S.v. “adaptive device.” Retrieved April 22, 2019 from