Nov. 9, 2021 — In July, close to a dozen artists and creatives in the spinal muscular atrophy (SMA) community gathered virtually for a brainstorming session hosted by Genentech, a San Francisco-based biotechnology company.
Genentech runs a program called SMA My Way, which aims to support the SMA community and raise awareness.
SMA is a rare genetic disease that causes weak muscles and can make it hard to breathe, walk, or sit up straight without assistance. It affects over 25,000 Americans and is the No. 1 cause of genetic death in infants.
The group collaborated to create the newly released single, “Spaces,” written and sung by James Ian, a musician and actor with SMA, and a music video, sponsored by Genentech.
“Genentech listened closely to members of the SMA community and heard reoccurring themes — that people with disabilities are underrepresented or misrepresented in media and social media,” says Michael Dunn, senior director of marketing at Genentech.
“They wanted to be known for their talents, not defined by their disabilities.”
Dominick Evans, who directed the “Spaces” music video, says the big-budget project proves that people with disabilities can be competitive in the media industry.
Evans, who has SMA, directed the entire video from his bed due to mobility restraints.
“How many disabled people are we holding back by not giving them access to funding or other things they need to make these kinds of media projects?” Evans says.
“I made this amazing music video, and having the support of Genentech, the SMA community, and the studio we worked with in Hollywood gave me the freedom to show what I’m capable of.”
About 61 million U.S. adults live with a disability, according to the CDC. That’s about 1 in 4.
But a recent USC Annenberg Inclusion Initiative study shows that this population is still not widely reflected on-screen, despite Hollywood’s various diversity initiatives over the past few years.
The study found that out of 126 films and 180 scripted series produced by Netflix in 2018 and 2019, 5.3% of leads or co-leads were characters with disabilities, and only 2.1% of all speaking characters had disabilities.
“Given the prevalence of disability in the U.S. population and thus among the Netflix audience,
this is an area where this entertainment company can seek to increase authentic representation — and can lead its industry peers toward greater inclusion of this community,” the report states.
In response to the study, Netflix pledged to invest $100 million dollars in efforts to help bring underrepresented groups into the film and television industries.
But even when increasing representation, it’s critical that people with disabilities are involved in the projects, according to Evans, who runs FilmDis, an organization that monitors the presence of disabled talent in media. He also works as a disability consultant to Netflix and Lionsgate show creators.
“I don’t feel non-disabled people understand our stories enough to get them right very often,” says Evans. “I personally struggle to find examples where it’s done correctly.”
“So, from the get-go of a project, disabled people need to be there. They need to be playing disabled roles, and disabled people need to be at all aspects of production.”
The already highly competitive media industry can be even more challenging for actors, musicians, and other creatives with disabilities, according to Evans.
“When you have a disabled actor getting one audition every 6 months, where non-disabled actors get six auditions a day, that’s a really big disparity,” says Evans. “That’s what’s happening right now, because they’re being relegated to roles that are considered ‘disabled roles’ and nothing else.”
Disability Media Network (DiMe) is a new TV streaming service looking to shift this disparity.
All content on the platform — documentaries, cooking shows, movies, and more — either features or is produced by people with disabilities.
The newest DiMe project set to be released Nov. 15 is the film The Anxiety of Laughing, written by and starring actor Andrew Justvig, a recent graduate of University of California at Riverside, who has cerebral palsy.
Cerebral palsy is a disease that makes up several disorders. “Cerebral” refers to the brain, and “palsy” refers to problems with your muscles. The disease can affect your ability to move and maintain your balance.
The film explores the relationship dynamics between a stand-up comedian with cerebral palsy (Justvig) his wife, who is non-disabled, and her unsupportive mother.
Disability attorney and DiMe founder Jennifer Price told Fox News that authentic depictions of people with disabilities are a major focus for the network.
This includes exploring topics surrounding disability that often go unmentioned.
“I want to address the topic of the intersection of sex and disability because that topic, I feel, doesn’t get discussed, or if it does get discussed, it is in a demeaning way,” Price said in an interview with You First Podcast.
Price said that she hopes storytellers “continue to have people with disabilities playing in speaking roles, but the disability is not a part of the story line.”
These days, social media can be just as influential as TV and film, which gives people with disabilities an opportunity to share accurate, firsthand information about their everyday life experiences.
Paula Carozzo, a Miami-based disabled content creator and inclusive activist, uses her platform to educate people about topics surrounding cerebral palsy and disability in general.
Carozzo, 26, had complications from tonsillitis surgery at age 5, which caused brain damage, ultimately leading to cerebral palsy.
She partners with various brands on social media, including Tommy Hilfiger and CeraVe, many of which are looking to reach the disability community in their products and marketing.
In a recent post, Carozzo challenged her over 17,500 followers who call her an “inspiration” to really dig deep and ask themselves why they feel that way.
“People have been brainwashed to see struggle, to see defeat, to see all these things as inspiration, that’s fine, but maybe it is time to redefine it,” Carozzo says.
“To me, it’s not inspiring that I don’t have an elevator to get somewhere and I have to struggle 30 floors up to get to where I need to be.”
Carozzo says she feels most rewarded when her content inspires people to stand up for the disability community in their own unique way.
“I receive DMs [direct messages] all the time, like ‘I saw somebody park in a disability spot. They didn’t have the placard, so I went and asked them if they should be parked here,’” Carozzo says.
“To me, that is a lot bigger than a brand deal and a paycheck.”
Combining personal gifts and talents with advocacy seems to be what many creatives with disabilities share in common.
“Spaces” is a great example.
“That one line — ‘If there’s one thing you’ll see, it’s my humanity’ — I think that’s the one thing that we all wanted to be the first thing that people would notice about us,” says “Spaces” singer James Ian.
“People with disabilities belong in all the spaces that non-disabled people occupy as well, whether that’s the leading role in a major film, or the lead singer of a huge, successful song.”