Hoping to spark a broader conversation about authentic representation in the disability space, Genentech has teamed with the spinal muscular atrophy community and musician James Ian on “Spaces.” The song and video, which debuted across social media today, was created from start to finish by individuals with SMA.
The project had its genesis during the pandemic, during which Genentech broadened its outreach to people with SMA. The effort intensified after the August 2020 approval by the Food and Drug Administration of the company’s SMA treatment Evrysdi.
“We know the medicine is only one part of the responsibility we have,” said Michael Dunn, senior marketing director, neurological rare disease at Genentech. “Our commitment to the community has to go a lot further than that.”
Key to the project was presenting a nuanced view of individuals with disabilities — not just people with SMA, but the one in four people in the U.S. who, according to Dunn, have some sort physical or psychological disability.
“Disability is often underrepresented or misrepresented in media,” he explained. “What we heard from our conversations with the community was that disabled people are labeled as ‘inspirational’ or ‘brave,’ rather than considered as artists or considered for what they do… We wanted to represent the community a little more thoughtfully.”
For Ian, a 39-year-old with Type 3 SMA, “Spaces” represents a full-circle moment of sorts. A musician and multi-instrumentalist, Ian had to learn how to balance the demands of his profession with the physical limitations imposed on him by SMA.
“There’s so much inaccessibility in venues,” he said. “Even just getting to the stage — stairs are difficult for me. I’ve had to ask people for help; I’ve had people pick me up on stage.”
Over the course of the last two decades, Ian has not only devised his share of clever workarounds — “I can’t carry my PA that well, so I would take off my belt, loop it through the PA handle and carry it over my shoulder,” he recalled — but also forged enduring bonds with members of the SMA community.
Ian considers “Spaces” a tribute to those relationships and to the inspiration he has derived from them. Over the course of the creative process, he did everything in his power to ensure that the song lived independent of the SMA cause, revising the lyrics time and time again to ensure that they were broadly relatable. He also consulted with leaders of the community to ensure that he didn’t fall into the trap of what he calls “inspiration porn.”
“I was getting really nitpicky,” Ian said. “There would be certain phrasings where I’d be like, ‘No way, this word has taken on a different kind of meaning.’ “I felt a huge sense of responsibility to get it right.”
The final product, Ian believes, succeeds on its artistic and creative merits while simultaneously addressing issues around authenticity in the representation of disabled individuals.
“I want to bring people in the SMA community together and show them that they can really go after their dreams,” he said. “I hope we’re taken seriously and given the opportunities to succeed the way we want to succeed in the areas we want to succeed in.”