Making Disability Aesthetics Thrive: Creating Access and Eliminating Barriers
Since childhood I’ve known and appreciated Mexican artists like Kahlo, Rivera and Orozco. The music my family listened to, like Vicente Fernandez or Juan Gabriel, brings back memories of different moments in my life. Today I am drawn to actors and filmmakers like Gael Garcia Bernal and Guillermo Del Toro, who are authentic voices in the Latinx community. The language, food, music, colors, books—I feel a strong, clear connection that this is my culture and I’ve always been very proud of this part of me. However, I did not recognize that my life and work have been part of another culture for over half my life.
At the age of 13, I was paralyzed from the chest down in a car accident. I have limited mobility in my upper extremities, and I use a powered wheelchair to navigate the world. Early on I learned to advocate for myself and the disability community, but for many years my art was intentionally kept separate from my disability advocacy. I began to explore, understand and lean into weaving my two worlds in 2014 when I came across the Creative Access Program, administered by the Alliance of Artists Communities. The program offers artists with disabilities two-to-eight-week residencies at one of four host sites, including room and board, a stipend, and—the deal-maker for me—a travel award for a personal assistant/caregiver to come with me. I had never seen something like this offered! I applied, and I had a wonderful transformative experience at Vermont Studio Center that led to showing my work and curating art shows with other disabled artists.
The following year I had a brief conversation with Carrie Sandahl, associate professor at University of Illinois at Chicago, where she is director of the Program on Disability Art, Culture, and Humanities, that changed my relationship with my work. She explained that
to be an artist with a disability or disabled artist doesn’t mean the content must always be observably about disability, but more so that what we create is uniquely a result of how our bodies and minds exist and interact with our environment.
It seems like an obvious idea, but I had not considered this. I stopped being afraid of being labeled a disabled artist and became proud of presenting myself as such because I had a lot to offer the world. It was an “a-ha” moment that liberated me from following the rules that hadn’t quite worked for me.
Doing Our Own Thing
Sandahl first became involved with disability art and concepts about disability aesthetics and cultures in 1995, at the University of Michigan, which hosted the first conference for disabled artists led by disabled artists. It was the first time many of them were meeting. “So many times we’ve just been turned down or we had been told, ‘It’s not a thing,’” Sandhal explains. “This was about creating something new because none of us in any of the disciplines we were in belonged there, and the reason is because we don’t fit. So instead of trying to fit, why don’t we do our own thing?” Until then, many of the artists were working in isolation but connecting with each other and with their communities; this concept began to take off.
In 2009 Sandhal and Esther Grimm, executive director of 3Arts, a Chicago-based organization supporting artists of color, women artists, and artists with disabilities, began a partnership that has resulted in a robust community of artists with disabilities in Chicago. Together they have helped elevate the work of artists working in various media. A pivotal point was witnessing the work and performances of wheelchair dancer Alice Sheppard. A new form was being created before their eyes—new shapes and movements. Grimm recalls, “Experiencing disability aesthetics embodied in the artworks led to this moment of going, Wow, I’ve just seen something fantastic! It’s like the explosion of an art form. The hair on the back of my neck stood up.”
Today, Sandahl and Grimm have ongoing conversations about barriers for our community—physical, financial, educational, legal, the complicated history of disability policy…and sometimes simply that the portfolios of artists with disabilities are different. For example, they learned from deaf folks applying for grants for American Sign Language (ASL) poetry that their work didn’t fit in as poetry because funders wanted to see written text. “People didn’t understand that ASL is a different language than English,” Sandhal says. “It doesn’t translate and it also wasn’t counting as performance, so they would get stuck in between categories.”
Sandahl and Grimm started a unique residency program in Chicago with the goal of providing opportunities for artists with disabilities who were reluctant to participate in traditional residencies because of issues with access, transportation or leaving their homes for weeks without their medical teams or personal care attendants. “It was a powerhouse of a realization, like a big lightbulb, for me to think about what immense opportunity there is in disability aesthetics, in the sense of expanding rigid boundaries of art,” says Grimm. The pair continue to ask questions, learn from the artists and evolve the program. They find new ways to support artists and share what they’ve learned with others one-to-one or via events and conferences.
A Progression of Process
For filmmaker Jason DaSilva, disability arts and culture is its own unique form. “It is telling my own stories through the film medium and from a participatory perspective,” he says. “That means putting myself on camera with my disability and telling my story honestly with no curtains drawn.” Sixteen years ago, when Da Silva was diagnosed with Multiple Sclerosis, he was already making films. As his disability progressed, his vision and mobility declined, and he went from walking to using a cane and then a wheelchair.
“The filmmaking has not drastically changed,” DaSilva continues. “My sense of control is different because my vision has gotten worse. I have to rely on my editors and cinematographers more…It makes new ways to use the creative form of filmmaking. At the same time, the constrictions are limiting, so I have to find new ways to work and work with others.”
His 2013 film When I Walk earned critical acclaim; its 2019 sequel, When We Walk, is on its way to distribution following a successful festival run; and he is actively working on the final film in the trilogy, When They Walk. This will be the first documentary trilogy about and by a person with a disability. DaSilva’s creative process and vision are constantly shifting as his disability progresses, forcing him to constantly adapt and find new ways to tell a story. “I can continue to make films, but the process is always different,” he says.
Part of the artmaking process often involves funders that support the work, are open to new forms and understand the challenges or barriers artists face. “It’s important to get our stories heard, but grant makers have to be supportive of the fact that we need additional help,” DaSilva explains. “I personally feel like I’m in a place of privilege. I’ve been able to make it work. But I don’t think that everybody has the option; it’s still a constant effort that requires having a team of development staff that are empathetic to the issues.”
There are common barriers that artists with disabilities face and funders or program directors share a responsibility to change the culture of their own organizations and transform the creative world to be more inclusive. It starts by actively listening and then examining what they are doing and how to improve.
Accommodations. One of the biggest unmet needs for artists with disabilities is having funding to pay for accommodations if they are doing a public presentation (ASL interpreter, captioning, or audio description for the blind) or if they need accommodations for their own practice (modified equipment/tools or paying a personal assistant).
Access to Education. Education or development programs (film, theater or arts) are not accessible to students with disabilities if spaces are not accessible (stages or labs) or requirements include ability to carry, operate or move equipment. Curricula and internship opportunities can have expectations that a student be available for long stretches of time on set or in a studio.
Application. Barriers manifest even before getting into the program. For example, artists with disabilities may not feel welcome in applying for a program or funding because a website is not accessible for screen readers, or the language or images are not representative or inclusive of disabled artists.
At the Table. Most decision-making bodies lack representation from the disability community, so grant panels and advisory boards miss out on disability perspectives that intersect with all identity groups.
So, people don’t apply to the program or pursue a funding opportunity, or they choose other career paths. Are we missing out on some brilliant and creative minds?
Deb Dormody, director of the Creative Access program at Alliance of Artists Communities, suggests, “Funders should examine the opportunities they are offering and who they might be leaving out. If the premise behind the fund is that it's open to any artist who meets the eligibility criteria, examine whether any artist—and in particular artists with disabilities—could actually take advantage of what's being offered. Intentional investing in programs like Creative Access is critical toward becoming more equitable.” She adds the importance of offering flexibility in artist payment structures so as to not compromise benefits; consider travel to and from the residency and the different ways an artist might want to get there; provide clear transparency of what access is available, without artists having to request it; and plan for a cushion in the budget to sufficiently cover the cost of an artist's personal care assistant if necessary.
Sandahl and Grimm find it important to seek and compensate grantees and applicants for feedback on the process of applying, any challenges and what could be better. Sandahl emphasizes, “We have broad categories that shape how funds are distributed but we also trust people to know what they need and tell us. I think that’s always been fun in working with artists.”
We must acknowledge that disability is a human experience relevant to everyone.
To artists with disabilities, if you didn’t know, now you do—disability aesthetics is a thing, continuously redefining itself, but a thing! If you’ve felt like you and your work don’t fit in, throw those rules out the window and confidently create your own path. To funders and program directors, while you support the development of something new that probably isn’t in the already-established vocabulary of the arts, Grimm assures, “You’re going to experiment. You might consider that you fail sometimes. You try again. You learn things from the failure. It’s how you work through creating art.”
Reveca Torres is an artist, filmmaker and disability advocate. She is founder of BACKBONES, co-director of ReelAbilities Film Festival Chicago and a 2020 IDA Documentary Magazine Editorial Fellow.