It used to be that when searching for famous artists with disabilities, you’d come up with a short list of mostly men: Van Gogh, Beethoven, Monet, Matisse, Chuck Close. If you searched for performing artists with disabilities, the list was even shorter—Ray Charles, Stevie Wonder, Peter Dinklage, —and still mostly male. Deaf actor Marlee Matlin was a welcome outlier.
That’s changing. Art museums extend Yayoi Kusama’s exhibits due to popular demand. Ali Stoker made history as the first wheelchair user to win a Tony in 2019. And after winning the 2016 Tiny Desk Contest, Gaelynn Lea went on to compose original music for the Broadway reveal of Macbeth in 2022. These artists (and others) are holding the door open for other disabled femme artists, and the arts and culture world is beginning to take notice.
Ava Xiao-Lin Rigelhaupt is no stranger to “firsts.” She was the first autistic creative consultant on Broadway for the groundbreaking Broadway musical featuring openly autistic actors (How to Dance in Ohio) and now, a writer for the first PBS KIDS’TV series to feature an autistic protagonist, Carl the Collector (premiering Nov. 14). Ava’s mission is to represent the autistic community on stage and on screen in nuanced and non-cliched ways. “When people came and saw How to Dance in Ohioit was the first time that some people saw themselves represented on stage authentically, and also really felt welcomed into a Broadway theater,” she says. As the Broadway show’s creative consultant, Ava also did a lot of work on outreach and accessibility initiatives. “We wanted to say, ‘You’re welcome here’…It really showed people that it was possible for autistic people to be actors, and to be actors on our huge Broadway stage.” Ava believes making allies is important in building a career as a disabled artist. “It’s not going to be the entire industry that changes overnight…For me, it was finding these different allies that want to do the work with you and uplift your voice—historically marginalized voices.”
Heather Bergersona research- and process-based visual artist, also finds connecting to community important. “Artists need each other. By nature we are social beings… The artists who make the most impact choose collaboration.” Heather works with children’s hospitals, mental health facilities, and cancer centers, and connects with other visually impaired artists, and with artists in her hometown of Albuquerque, New Mexico. She recently founded her own business and plans to launch a tactile mural business soon, keeping community in mind. “I need to create. And I’m going to create something that’s meaningful. And I want people to tell me what they need… I use (my business) The Meandering Artisan as a way to connect with my communities here and to learn about what their needs are, what their hopes and dreams are, and how I can offer that as an arts entrepreneur.” Heather is quick to say that she also makes art as a way of understanding the world she inhabits, like defying the idea that “women are delicate flowers” with her series of carnivorous plants: “Like many women, I live in fear,” she adds. “And so a lot of my drive to create comes from fear…Fear is so intriguing to me…As somebody who has lived through trauma and continues to live with PTSD (post trauma stress disorder), I’m ultimately trying to understand myself… What I realized through my healing process (from the 2020 car accident that caused her vision loss) is that my artwork, what ties it all together, is that I am interested in survival traits.”
Ariel Baska uses fear as a way to reclaim power. “I was a disfigured child…When I was five, I had a bad babysitter who brought over a bag of weed, her boyfriend, and A Nightmare on Elm Street on VHS. And I fell in love with Freddie, because I thought that was me.” They explain, “Everything in the eighties (re: disabled people) was either monsters or martyrs…Freddy had agency….I liked the idea that I could have an effect on the world, and Freddie was sort of my avatar for that.” Ariel is currently raising funds for a film that uses this story arc, titled Monstrous Me. Though Ariel had always been an artist, it wasn’t until lockdown when they made their first film. Our First Priority about medical gaslighting, found success through collaboration. After pulling together a creative team and raising funds on Kickstarter, the film had a lot of good words of mouth. Ariel also considered all the intersections the film hit—like disability and horror, and entered it to a wide range of festivals. Our First Priority ended up playing over twenty festivals. It also won the Advocacy Award from Superfest Disability Film Festival, which opened the doors to several other opportunities, including an in-flight screening on Alaska Airlines. Ariel also founded Access Horror, a two-day festival that included films, panels about disability and horror, the history of horror, and horror as an agent of change. “I didn’t want it to just be a film festival,” says Ariel. “I wanted it to be a summit about changing the way people make films…and the way people perceive them.
Another filmmaker (and theater/performing artist), Regan Linton, also hopes to change the process of artmaking. A performing artist who’s worked across the nation, she says, “I had conversations with top people at top theaters who said, ‘People are…afraid of doing the wrong thing, and they just want to avoid it rather than getting into it and feeling like they mess up.’ So much of my work is…to assist them in developing solutions, so that they feel less afraid.” Regan was the first wheelchair-user to train in acting at the University of California San Diego, where she studied all facets of theater. “You have to get out there and learn the craft,” she advises emerging artists. “You need to learn your voice. You need to learn your body. You need to learn about direction and design. You need to learn all these different things that are going to be a part of what you’re building.” She also stresses the importance of mentors and honest feedback. “It’s that balance of ‘What am I creating? What am I passionate about? But also understanding the larger context of how it resonates in the world, because ultimately, the only way you make an impact is if it resonates.” Regan believes people with disabilities can make a big impact. “There are so many unique humans who don’t fit the box, and therefore…their lives are so much more interesting and complex…What are those narratives that we don’t hear, that we don’t experience? And how can we work differently?”
The impact of artists with disabilities can positively impact the wider world,” Regan continues. “When we listen to the unheard narratives, and respond with human-centric art making, we can then try to build something that welcomes everyone.”
About The Author: Cindy Brown Is A Fellow With The Loreen Arbus Accessibility Is Fundamental Program, A Fellowship created with Women’s ENews to train Women with Disabilities as Professional Journalists so that they can write, research and report on the most Crucial Issues Impacting the Disabilities Community .
