Arts Philanthropists Need to Change the Way They Think About Disability. Let’s Start by Collaborating With Disabled Artists


Traditional thinking tends to frame disability in the arts as a deficit of one form or another. It acknowledges a lack of disability visibility, a lack of professional and training opportunities, a lack of support, and a plenitude of longstanding, seemingly unsolvable problems. It recognizes that the challenges disabled creatives face, from employment to access to resources, have been laid bare and made worse by the COVID-19 pandemic. According to Americans for the Arts’s pandemic research, disabled creatives are anticipating lower annual income ($16,000 total annually) and higher full unemployment (67 percent) than their nondisabled peers.

But these data points are only part of the story. And if, as a culture, we allow this information to be the primary determinant of contemporary philanthropic and artistic practices, it risks further compounding inequity. 

<i>Hi, Are You Single?</i> (2017). Production still from Ryan Haddad's solo play Hi, Are You Single? Photo by Michael Bernstein. Image description: Under cool stage lighting, Ryan Haddad sits at the end of a bed beside his metallic walker. He wears square glasses, a teal polo, patterned shorts, and lower leg braces.

Hi, Are You Single? (2017). Production still from Ryan Haddad’s solo play, “Hi, Are You Single?” Photo by Michael Bernstein. Image description: Under cool stage lighting, Ryan Haddad sits at the end of a bed beside his metallic walker. He wears square glasses, a teal polo, patterned shorts, and lower leg braces.

The Real Problem

Framing disability in this way—as a series of deficits—adds to the problematic thinking that interprets access as questions of patron services, facilities, or technology. Disabled artists have been identified as absences, and, with the best will in the world, some organizations with the means to do so have sought to address this absence by welcoming select disabled artists. But inclusion or the presence of a few disabled artists does not redress years of inequity and inattention. Such gestures are performative and tokenizing.   

If we focus on disability as a problem, we will never know the artistry, ideas, and pure brilliance of a large part of the creative world. The question is not how to include disabled artists. The fundamental question is, how do we build our cultural spaces and aesthetic frames in such a way that we move towards equity and adopt a Disability Justice framework? 

We want to consider intersectional disability in the arts in all of its raw, conflicting, and provocative multiplicity, and draw attention to our history of cultural production, our artistic sensibilities, and aesthetic intuitions. The wisdom of disability and expertise of disabled artists are in part that we are not monoliths subject to single cultural narratives.

What might the future hold if we commit to disability as an artistic and generative force? What does it look like if artistic, disability, and philanthropic communities work together? 

Time is something disabled people experience expansively, and dreaming our future should not have to be a radical act. 

We’re writing this together, as an artist and a funder, to invite you to dream big with us. We’re a part of Disability Futures, a new fellowship initiative funded by the Ford Foundation and Andrew W. Mellon Foundation and administered by United States Artists. The learnings of the first year of this fellowship could offer a template for change that would transform the practice of support for disabled artists. 

Alice Sheppard. Image description: A Black woman leans forward and smiles brightly, teeth showing and eyes closed, as she rests her chin in her palm. She has light brown skin, curly shoulder-length hair with subtle highlights, and wears a black blouse and sleek gold necklace.

Artist Alice Sheppard. Image description: A Black woman leans forward and smiles brightly, teeth showing and eyes closed, as she rests her chin in her palm. She has light brown skin, curly shoulder-length hair with subtle highlights, and wears a black blouse and sleek gold necklace.

Nothing Without Disabled Creatives

There is a mantra, “nothing about us without us,” coined by disability advocates in South Africa in the 1980s. Reframed by contemporary activists as “nothing without us,” this principle attests to the fact that disabled people know what is best for ourselves and our communities. When it comes to the arts, this means reimagining everything about the way that business has been done. 

There are some easy recommendations: employers must hire disabled staff. Boards must elect disabled members. Funders must invite disabled creatives to join advisory groups and the panels that decide funding allocations, and compensate us for our time. 

But even before we arrive in these places, there must be space and willingness to transform. Adding disabled staff does not create change unless an organization and its people are willing to change. Deep structural transformation is necessary. Deep reeducation is necessary. Complex re-envisioning of the very things that seem unchangeable is necessary. Now is not the time for stopgap measures or window dressing.

Lane Harwell. Image description: A nondisabled presenting white person with short blond hair and blue eyes behind black rim glasses smiles at the camera. They are wearing a white collared shirt with a light blue bowtie and a dark blue blazer against a red background.

The Ford Foundation’s Lane Harwell. Image description: A nondisabled-presenting white person with short blond hair and blue eyes behind black rim glasses smiles at the camera. They are wearing a white collared shirt with a light blue bowtie and a dark blue blazer against a red background.

To build a new future, funders must collaborate with disabled creatives to reimagine such fundamentals as application and review processes, restricted and unrestricted funding, time, process and product, as well as other creative support structures. Nothing can be assumed. Nothing should be left unexamined. Everything is—and should be—open to reimagination.

Disability Futures is for, by, and with disabled creatives on many levels. Each of the 20 inaugural fellows received an unrestricted grant. For the Disability Futures Festival, which runs July 19–20, Ford and United States Artists employed a “nothing without us” curatorial approach, inviting the fellows to spotlight their artistry and saying yes to the production, access, and financial resources they need. The result is a disability-led dance party, performances, and conversations that could spark a new kind of dialogue between creatives, funders, and gatekeepers.

 

Understanding What Access Really Means 

Transforming support for disabled creatives may start by looking inward. We need to educate ourselves about ableism and audism, be vulnerable, and understand how our personal relationships to disability have influenced our public work. 

For Lane, the work has shifted them from identifying as nondisabled to claiming their disability identity and anxiety and depressive disorders, and mining how this identity is bound up with their white privilege, queerness, and gender expression. Showing up is an ongoing process; it can be joyous, it can be painful. Everything that we learn will affect the ways we work.   

(do not) despair solo (2018). Performance, Abrons Art Center. Image credit: Ian Douglas. Image Description: On stage, Perel leans across their cane in front of an X-Ray projection showing screws and a rod inside of a hip socket. They wear black leather pants, and a golden sleeveless top lit up by a pink light from the side.

(do not) despair solo (2018). Performance, Abrons Art Center. Image credit: Ian Douglas. Image Description: On stage, Perel leans across their cane in front of an X-Ray projection showing screws and a rod inside of a hip socket. They wear black leather pants, and a golden sleeveless top lit up by a pink light from the side.

Disability intersects with every contemporary issue, from abolition and education to healthcare, policing, transportation, and climate justice. Through Disability Futures, Ford has had to learn to think of access as a language, not a solution, and work through how it impacts the institution as a whole. 

Access is fundamental to our human connection with one another. If funders cannot invest in that, there is no point.

Investment and innovation in this space, including disability-led technology, is one way to connect disabled creatives and audiences. But we cannot rely on technology as a fix; access is more than a matter of compliance, checklists, or technologies tacked on to make creative work accessible to patrons. Instead, we must put aside our assumptions about what works and prepare for a time of artist-led discovery. 

Disability Futures was conceived prior to COVID-19, but the meaning, the configuration, and experience of the fellowship took place during the pandemic. The virtual festival of conversations and gatherings invites audiences to meet a powerful group of Deaf and disabled artists in a format well-known to the disability community even before the pandemic. And so it’s with the intersection of the festival, funders, the pandemic, and disabled artists that we begin.

 

Lane Harwell is a program officer at Ford Foundation. Alice Sheppard is a choreographer and an inaugural Disability Futures Fellow.

The Disability Futures Festival will take place online from July 19 to 20.

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