Advocating disability in the arts
The presenting theme of the arts in 2018 is by and large inclusion. We saw it in the recent 90th Academy Awards when a jittery Frances McDormand fierily advocated inclusion riders to a crowd of hesitant yet emphatic cheers. The Grammys, in typically uncanny fashion, had a few cutesy symbolic gestures of their own and brought out rapper Logic to preach mental health awareness.
Despite Logic’s inevitable corniness, and the faintly musty smell of the Oscars, there was a sense that these organizations cared — or at least wanted you to know that they cared — about representing diversity.
There is a difference, of course, between the portrayal of inclusion and actual inclusion. People who have any sort of difference from the norm might be portrayed in film or in music, but whether they’re actually included within the process of the art making is an altogether different question, and one that varies community to community.
For people with disabilities, the question of whether they’re included in art making is almost always answered with a dismissive “no.” While people with disabilities make up nearly 20 percent of the U.S., they’re rarely included in the arts. A survey of 900 films from 2007-2016 found only about 2 percent of characters have a disability, and overwhelmingly those who do are portrayed by an able-bodied person.
Take the Oscar winner for Best Picture this year, “The Shape of Water.” The film follows a mute janitor who falls in love with a mythical sea creature. Because of her disability, the character speaks in sign language. The character was portrayed by Sally Hawkins, an able-bodied actress, and she spent months training with an American sign language teacher for the role.
Disability-rights advocate Susan Fitzmaurice said in an interview with The Daily that the portrayal missed a crucial detail.
“As the movie went on, she looked at her hands. Nobody who signs looks at their hands. That became a real distraction for me. It’s a great movie, but that one piece was a distraction. And for people who were deaf or mute, it became an extreme distraction,” she said.
Fitzmaurice is particularly interested in the intersection of arts and disability. For 10 years she’s been a volunteer for VSA Michigan, the state chapter of the international organization that focuses on arts and disability. VSA, or Very Special Arts, was founded by Ambassador Jean Kennedy Smith and is a department in the John F. Kennedy Center for the Performing Arts. VSA’s website explains their mission is “to create an inclusive society where people with disabilities participate in, learn through, excel in and enjoy the arts.”
Because disability can take many forms, VSA’s advocacy and consulting do as well. VSA teaches artists how to get involved in the disability community, and it teaches teachers interested in incorporating art into the classroom how to interact with a student with a disability. Many of these teachers have never received any kind of disability training.
VSA Michigan works with professional artists too, putting on exhibitions and local workshops around the state.
Fitzmaurice’s work with the organization is focused on accessibility. She makes sure the venues are accessible for events the organization puts on, visiting and testing each facility in person. Because Fitzmaurice uses a wheelchair herself, she said she can recognize the details that well-meaning facilities might simply overlook.
“I open a lot of eyes. I think a lot of people think about disability in terms of what they can see, and they don’t think about the little stuff,” Fitzmaurice said. She gives an example by shaking the table at which she’s sitting.
“Like how distracting it is if you have a table that moves around, and you have a kid that’s really distracted with movement.” She shakes the table again.
“You want them to pay attention and you want them to interact with the art, and instead all they’re thinking about is that this table they’re sitting at is moving. They can’t focus on what the art is trying to do; they can’t focus on what the teacher is trying to tell them to do. They’re focusing on this table that’s moving,” Fitzmaurice said.
Fitzmaurice is passionate about ensuring people with disability have equal access to art because she said it offers them the ability to express themselves in nontraditional ways. Art can be different, she said, as long as it speaks to you. People with disabilities can feel liberated in creating things that don’t necessarily look traditionally beautiful, because it speaks to their individual experience. People with disabilities can communicate through this form of expression.
“It’s OK that your art doesn’t look like everybody else’s art. Art may be perfect for who you are. And just that can inspire people to look at it,” Fitzmaurice said.
She points to a painting that sits atop a bookcase, a red and orange abstract expression.
“That was painted by an elementary-school student who had a disability. I walked in, it spoke to me, so I bought it,” Fitzmaurice said.
VSA Michigan assists in all forms of art. That means painting, but also film, music, performance, etc. She gives the example of an after-school rap group they worked with in Hamtramck and a young soloist program they have.
While VSA Michigan sometimes finds professional artists with disabilities to work with students, Fitzmaurice said it’s difficult because these systems aren’t currently in place in public education. Students with disabilities are rarely given the opportunity to participate and pursue art at a young age, and so people with disabilities are not always well represented in the arts community. Most of those who go on to have full careers in art, she said, are in film.
Nic Novicki, an actor, comedian and producer, understands the nuances of being a person with a disability in the film industry. From early on, he learned that to have a fulfilling career in film, he needed to carve his own path.
“I think the fact that I was producing my own content gave me the experience that traditional Hollywood wouldn’t have given me,” Novicki said in an interview with The Daily.
For Novicki, his extensive résumé of producing is what got his foot in the door for major roles, like his first on “The Sopranos.” He started doing stand-up comedy while in business school at Temple University and began writing and directing films, including “A Little Broke,” which was acquired by ShortsTV. Once he had that experience, he was able to land other TV roles, like his critically-acclaimed work on “Boardwalk Empire” as showman Carl Heely. Like any other actor, he said, it took years of consistent progress to get work in the industry.
Producing content also meant writing and portraying the roles Novicki wanted to play rather than roles that were focused solely on his disability.
“As a little person actor, it can sometimes be hard to find roles that aren’t so focused on the disability itself. But in doing my own work, I’ve been able to allow people with disabilities, even beyond myself, the role of the lawyer, or the bad boyfriend, or the good boyfriend, or a gangster,” Novicki said.
Realizing he was in a position to change the narrative of people with disabilities in film and TV, Novicki worked with Easterseals — a national organization that advocates for people with disabilities and of which Novicki is a board member — to create the Disability Film Challenge. For a span of 55 hours over the weekend, participants write, film and produce a three to five-minute short film. A winner is selected at the end of the competition.
While actors are certainly involved, Novicki is focused on getting people with disabilities behind the camera too. It’s the lack of representation in the entire film set and not just on screen that accounts for misrepresentation and stigmatization of people with disabilities, he said.
Winners of the competition include Jamie Brewer, an actress with Down syndrome, best known for her acclaimed work in “American Horror Story,” and Dickie Hearts, a gay and deaf man whose winning short film “Passengers” went on to win HBO’s Project Greenlight digital series competition in 2015.
The aim is to get the film industry and the disability community working together. According to Novicki, filmmakers and industry professionals often come to the festival to get people with disabilities involved in their projects. For people with disabilities, it offers a chance to get their name recognized, meet other filmmakers and gain experience in an industry that is not always easy to break into without an extensive network.
Novicki said now is the time for inclusion. He cites the ABC sitcom “Speechless,” which has multiple people with disabilities involved in production and writing, as well as “Game of Thrones” and “Breaking Bad,” both of which have characters with disabilities portrayed by people with those actual disabilities, as examples of what proper inclusion looks like.
“I have to say, it’s unbelievable to see Peter Dinklage on ‘Game of Thrones’ as this amazing, smart leader of a family, really the brains of the operation,” Novicki said. “And for all those people who watch the show, they’re not thinking of the helpless dwarf. They’re thinking of the leader.”
Despite the lack of representation now, Novicki is certain that the tide is shifting, and he’s confident that more exposure will lead to more opportunities for people with disabilities.
The 2018 Disability Film Challenge will be held April 13 through April 15, and registration is open until April 11. There is a 50 percent student discount.