I’m not invisible, I’m an original/
I’m so much more than what you see or what you bargained for—Lyrics from 'SPACES'
For many disabled people in creative industries, opportunities are arbitrarily limited by ableism. Dominick Evans, a disabled film director, and media researcher is one of the people trying to change that. He was involved in a recent project that brought together a group of artists who all share a disability: spinal muscular atrophy (SMA). That project became “SPACES”, a music video – funded by Genentech, a biomedical company – that Evans says is meant to show the possibility of lived experience.
Building a space
“The whole idea came from us taking up spaces, they [Genentech] wanted to give us a place to show off our talent and also provide something for the community that kind of shows that we belong in this world, and we belong in these spaces, and we deserve to be as human beings.”
Evans, who uses both he and they pronouns, directed the project from their bed and was joined by singer-songwriter James Ian and YouTubers Shane and Hannah Burcaw, alongside others who have the condition or are parents of children with SMA. For his part, Ian has called the project “A slap in the face to the status quo.” It’s part of a wider awareness campaign called SMA My Way.
“Spaces, spaces/
I leave my mark on these places”
After some initial trepidation about the intentions of the project’s funders, what with the disability community having a tenuous relationship with the medical industry at the best of times, Evans says the piece is at a place where it defies the typical limitations put on projects led by disabled people.
A music video at its core
“At first I thought, ‘This is gonna be a little indie project. it'll be adorable, [but] do I really want to sign on to it? Is it just going to be something kind of kitschy and cute?’ And the more I got involved, the more I said no, this is a really serious [project]. At the heart I want this to be seen as a serious music video. This is a disabled project, but at its core, it's a music video that could stand on its own against other music videos and any other song.”
Part of the strength of the song is that it was written collaboratively. The visual design was done by Zarek Elizondo, who also has SMA, and the song integrates input from a variety of people from within the SMA community, all noted in the acknowledgments. A core commitment to diversity was important to Evans, including countering the overwhelmingly white representation that can often be seen in disabled advocacy spaces.
Representation, or a lack of it, is something Evans has been researching for several years. They run a project called FilmDis where they, alongside collaborators, catalog representation of disabled people in film and television. He says that while representation of wheelchair users is poor, the representation of those with neuromuscular disabilities is even more scarce.
Representation
“Last year, we watched 250 TV shows, and I would say that SMA was maybe one character, if that, it's not something that's really represented.”
Evans says that many of the limitations on disabled creatives are industry-related. He also points to a need for the disability community to recognize those who may not be as visible within activist spaces.
“I really hope that they start taking people like me more seriously, as creators and contributors [...] And a really big (important) part of that is finding ways for activism to include those of us who can't get out and go protest and be involved in that kind of work.”
“I really hope that this will show that there's an easy way to make space for us if you're intentionally inclusive.”
“I’m proud of who I am, no one I’d rather be/
And I am worthy of anything and everything.”
Spaces, by James Ian, was released on November 9, 2021, on YouTube.
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