View all of Issue 3: "Artists Challenging Normativity"

Artistry and Activism: Building Movement for Disability Justice

Sins Invalid performance featuring Nomy Lamm and Cara Page.

Sins Invalid performance featuring Nomy Lamm and Cara Page. Sins Invalid is a disability justice based performance project that incubates and celebrates artists with disabilities, centralizing artists of color and LGBTQ/gender-variant artists as communities who have been historically marginalized. For more information, visit Photograph by Richard Downing © 2009, courtesy of Sins Invalid.

Jaklin Romine’s video work ACCESS DENIED (2018) begins with the artist at Bergamot Station in Santa Monica, CA. She faces away from the camera, at the bottom of a yellow staircase that leads from the parking lot up to one of the galleries. In her black power wheelchair, she is still. There is music from an event outside the frame. Cups left on a nearby ledge suggest a celebration is happening inside. Someone moves past Romine to climb the stairs. Someone else descends.

The sequences in Romine’s piece do more than document the ways that Los Angeles-area galleries are inaccessible to physically disabled people. She calls the piece a “compilation of experiences.” Slow-shutter still images capture a blur of nondisabled visitors ambling up and down entry stairs. The video uses ambient lighting and audio recorded from the street, where Romine remains for most of the scenes in the work. The piece divines an aesthetic of built exclusion.

Artist Jaklin Romine’s video Access Denied installed in the exhibition TALK BACK at Flux Factory, which featured works by contemporary artists with disabilities that dismantle systems of ableism.

Artist Jaklin Romine’s video Access Denied installed in the exhibition TALK BACK at Flux Factory, which featured works by contemporary artists with disabilities that dismantle systems of ableism. Image courtesy of moira williams.

ACCESS DENIED can also be understood as part of a key moment in contemporary disability artistry. It was made in LA but installed in New York, as part of a disability arts exhibition at Flux Factory called TALK BACK. It refuses the neat separation of aesthetics and access, two spheres that legal and regulatory notions of compliance imagine to be separate. When Romine explains to a gallery-goer that entering an inaccessible space is a choice to leave her behind, she gets the middle finger and the video captures the aggression that rises against disability direct action protest. When Romine directs her friends lifting her manual wheelchair up a flight of stairs, we get an impassioned joy that lives alongside the rage. If we could think of ACCESS DENIED as a work of “socially engaged art,” the piece teaches us that the term also includes a wide set of institutional practices whose depoliticization constitutes pervasive and ongoing engagements to social exclusion.

Disability artistry is having a moment. The Flux Factory show, with an array of works and programs, happened when disability artistry was unusually conspicuous around New York for several months. A festival called I wanna be with you everywhere at Performance Space New York featured four days of performances, readings, and study sessions. The Whitney Biennial curated the work of two disabled artists about disability. Movement Research’s Artist of Color Council featured an evening of disability dance artistry at Judson Memorial Church. Ali Stroker became the first wheelchair-using Tony Award winner for her performance in Oklahoma! Joe’s Pub hosted a sold-out show by disabled playwright, actor, and crooner Ryan Haddad exploring gay and disabled romance fantasy. And beyond New York, too: A disabled drag queen won the 11th season of RuPaul’s Drag Race.

Cultural organizations are recognizing that disability equity requires learning and humility— ongoing and transformative. Often this means disabled artists and cultural workers are asked to do the uncompensated work of offering advice and summarizing decades of disability scholarship and organizing over a cup of coffee. But there are models of excellence in some parts. Gibney, a dance and performing arts hub in downtown Manhattan, has conceptualized disability equity across all its offerings: programming disability arts in its season and special events, offering disability-centric dance classes, hosting conversations about disability and the arts, and partnering with disability arts activists to grow the field of activists who will make change across the city. Gibney is making disability part of what it is as an institution, resisting the idea that disability arts equity is only for organizations that focus solely on disability arts.

What do we call this? The lessons from decades of disability activism temper our rush to confer a “movement,” a word some offer with excitement. When protestors slammed sledge hammers onto the entrances to crosswalks where curb cuts should have been on Denver’s sidewalks in the late 1970s, they were in fact protesting the city’s decision to halt curb cutting that had started the year before. Too many city systems and cultural institutions hold tight to one-time initiatives, looking for landmark moves without troubling a whole system of inequity we call ableism. The work is not contained in a checklist, and celebrations of success must also be calls to continue.

I have been calling this moment a “swell” to describe the marked increase in attention for disability arts as an increasingly legible and transformative field without having to cede my wariness about its maintenance once it’s revealed just how thorough-going the work of making arts accessible really is. A swell is a rush. It lifts. It is also liable to recede. The way we narrate this moment will determine what we think is possible and what we want next. 

In the fall of 2016, I co-founded an organization called Disability/Arts/NYC (DANT) with fellow activist and scholar Simi Linton. The City of New York had recently announced that it would craft a cultural plan, a unique policy genre that sets comprehensive and long-term objectives for public arts and culture. Through the end of 2016 and into early 2017, the NYC Department of Cultural Affairs rolled out a vast public engagement plan to source priorities and concerns from New Yorkers.

Having read the cultural plans of other major cities like Boston and Denver, I knew about the vagueness. Principles like “inclusion” and “affordability” pepper the plans without very much detail about what this means or how they get enacted. Some artists I spoke with rolled their eyes at this kind of city stuff, suggesting cultural policy is always too slow for the real work that needs to be done.

But I was fascinated by cultural planning because it calls everything in. It purports to serve an entire city’s cultural ecosystem. That means it doesn’t tarry with administrivia the way other policy documents do. It also leads to a set of unique tactical opportunities. When the Department of Cultural Affairs says it wants to learn from all New Yorkers, there is an audience for ideas that might seem impossible. You get to leave evidence that you were there and you imagined something serious. The radical potential of cultural planning is harnessing the horizon of impossibility to train our activist sensibilities and desires.

The Department of Cultural Affairs was attentive from the start. We insisted that disability equity includes inclusive hiring within the agency itself—and within months they had hired a disabled cultural worker whose role included designing and monitoring the agency’s disability equity efforts. We pressed them on the lack of data about disability in a recent workforce diversity study. They studied models for disability data collection in other cities. We insisted that disability be explicitly defined when the words diversity, equity, and inclusion are used in official communications. We documented their commitments.

When the plan, called CreateNYC, was released in July 2017, there was a lot to celebrate. Disability equity received a full page of recommendations, eight implementation strategies to “support people with disabilities at all levels of NYC’s cultural life.” The recommendations included regular meetings with disability arts communities, increased representation of disabled artists on funding review panels, and support for access-related capital projects.

The plan also left out many things we had discussed with the agency, like a strategy for gathering missing disability data. Disability equity is consolidated on one page of the section on equity and diversity, when we had been advocating for it to be reflected in a structural form across the whole document. Like other cultural plans, CreateNYC is vague.

But unlike other plans, CreateNYC led directly to a funding initiative we proposed during a disability arts-focused town hall in early 2017. We asked that the city designate a fund specifically for the cost of access features like American Sign Language interpretation and real-time captioning, called CART. Small and emerging arts organizations who are committed to disability inclusion often don’t have the budgets to pay access workers fair wages for this labor and we argued that the most equitable location for these costs is in the public.

The Department of Cultural Affairs devised a fund for disability arts, broadly conceived, called the Disability Forward Fund. In the end, the fund awarded $640,000 to twenty-two organizations’ projects, in grants ranging from $10,000 to $35,000. But the story of this fund tells us a great deal about the complexity of city-supported disability equity initiatives.

In their effort to launch the fund within a year of the release of CreateNYC, a helpful benchmark for what the agency called “immediate” implementation of the plan’s recommendations, the Department released the request for proposals less than a month before they were due. The eligible city-funded organizations rushed to form proposals, often without necessary time to develop the meaningful partnerships needed to implement the projects.

The proposal review process remains opaque. The Department has not released the names of the panelists who decided the allocation of the funds, nor the agency’s instructions to these experts. We don’t know, for example, if proposals designated as new projects would be reviewed differently than proposals for existing projects. What we learned during the agency’s two information sessions about the grant left room for significant interpretation, which ultimately rested on the makeup of the review panel.

We advocated for the Department to craft a system to study and report on the fund applications, including analysis about what kinds of projects were proposed from the full applicant pool and which kinds of projects received funding. At the time of writing, we have not received responses to these requests. And although the Department called the fund a “pilot initiative,” suggesting it may be renewed, there has been no update about whether the fund will continue.

In their 2016 primer on disability justice, the organizers of the Bay Area-based disability arts collective Sins Invalid make an important distinction between the Disability Rights Movement and Disability Justice. Whereas the former relies on “litigation and the establishment of a disability bureaucratic sector,” it comes at the expense of “developing a broad-based popular movement.” Disability Justice finds a single-issue civil rights framework inadequate to address the wider weave of domination that able-bodied supremacy has been formed with. “The histories of white supremacy and ableism,” they write, “are inextricably entwined, both forged in the crucible of colonial conquest and capitalist domination.” As such, activism focused on civic bodies like the NYC Department of Cultural Affairs can miss the more fundamental ways in which those bodies already position multiply marginalized disabled people in uneven ways.

We learned this when we ran artist, activist, and cultural worker trainings we called “Boot Camps” in 2017 and most recently in partnership with Gibney in March 2019. The idea for the program came as we realized NYC needed a structure for bringing together experts in the field and distributing forms of knowledge about disability arts across the cultural landscape. Cohort-based trainings seemed the way to go.

When we gathered, we realized we were already assuming that everyone in the room was ready to engage in the city’s workshops and initiatives. When we asked participants to dream up new projects, we learned that the disability-related trauma in the room included a foreshortened sense of the future. Dreaming required an idea of a horizon that many kinds of state violence and dispossession can close off. Even the term “boot camp,” despite our attempts to deploy it tongue-in-cheek, called up disabling forms of correctional violence and able-bodied fitness supremacy that activated enforced vulnerabilities among the group.

Disability arts activism draws our attention to these complexities—which are routinely ignored by majority culture and in bureaucratic realms of all kinds, making it difficult to sort out priorities about “the arts” as if that category can ever exist independently from housing, employment, health care, transportation, labor, and other essentially interconnected aspects of disabled living.

Shannon Finnegan’s Museum Furniture project started with drawings of benches, chairs, and a chaise lounge. Text on the back-support surface of one bench says: “Museum visits are hard on my body.” On the seating surface it continues, “. . . rest here if you agree.”

The project switched media when Finnegan fabricated a few of the designs. Two large plywood benches are blue with white text. One says, “This exhibition has asked for me to stand for too long. / Sit if you agree.” The other says, “I’d rather be sitting. / Sit if you agree.”

Shannon Finnegan, Do You Want Us Here or Not? #5, 2017, Pen. Image courtesy of the artist.

Shannon Finnegan, Do You Want Us Here or Not? #5, 2017, Pen. Image courtesy of the artist.

The benches have been shown in several New York exhibitions of disability artistry. When I watch people interact with them, they’re cautious at first. Not just touching but sitting on works in a show draws out some hesitation. And then it melts away as people talk, or engage with nearby works for longer than they might otherwise. People spend time on the bench. Sitting on the benches is where access meets artistry, when the aesthetics of disability land on fundamental questions of how bodies and minds come into the presence of art.

These kinds of things are not access as an additive to art—they show us the ways that disability is a categorical intervention into what we understand art to be.

Disability aesthetics de-centers any one form of sensory and model engagement. “Visual” art becomes broader when artists design verbal or audio description of their work that opens access to blind, low-vision, and non-visual audiences. Museum programs featuring tours and events in American Sign Language spotlight Deaf culture as a form of knowledge in art spaces. These kinds of things are not access as an additive to art—they show us the ways that disability is a categorical intervention into what we understand art to be.

When people sit on Finnegan’s benches, the text about access gets covered up. For some visitors this becomes a game, trying to figure out what the bench says. The point, I think, is something else. The point is that the work has changed the space itself.

Kevin Gotkin is a Visiting Assistant Professor of Media, Culture, & Communication at NYU. In 2016, he co-founded Disability/Arts/NYC with Simi Linton. He received his PhD from the University of Pennsylvania in 2018. Since 2017, he has been the Artist-in-Residence at the Critical Design Lab at Vanderbilt University, directed by Aimi Hamraie. His writing has appeared in Dance Magazine, BOMB, and many scholarly publications. His artistic practice involves accessible media-making and disability-centric DJing.

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