People with disabilities can be found in all of the same spaces as nondisabled people. But singer-songwriter James Ian wants to make sure the world knows they’re doing lots more than occupying space.
“We’re leaving our mark and doing millions of things, anything you can think of,” Ian, 39, who has spinal muscular atrophy (SMA), said. “We’re coloring the spaces with our existence.”
That’s the main message Ian hopes people hear when they listen to “Spaces," an original song he co-wrote and performed that aims to celebrate people with disabilities including progressive neuromuscular disease SMA.
The Los Angeles-based musician teamed up with members of the SMA community and Roche's Genentech, which makes the SMA drug Evrysdi, to create the song and music video, which debuted earlier today (Tuesday) on YouTube. The song can also be listened to on music streaming platforms such as Spotify, Pandora and Apple Music.
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People with SMA worked on all aspects of the unbranded project, from coming up with the messaging to designing the album art, said Michael Dunn, Genentech’s senior marketing director for neurological rare diseases.
Ian pitched the song title during a brainstorming session last summer. Filmmaker and Hollywood disability consultant Dominick Evans, who also has SMA, directed the music video from his bed, and the pair worked with a Grammy-nominated producer to bring the vision to life.
Ian said he didn’t hesitate when Genentech first approached him about the project.
“Once I heard about it, I was really passionate about it,” Ian said. “I just felt it was really important to have our voice heard and to represent people with SMA and disabilities accurately.”
Dunn said the idea was born out of Genentech’s relationships with SMA patients through its patient support website, SMA My Way, who shared a frustration over the way people with disabilities are often portrayed in the media.
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“The purpose of 'Spaces' is really to focus on the real achievements … as being great teachers, creative artists or talented musicians in this case,” Dunn said. The company underwrote the song as part of its commitment to treating patients holistically, he noted.
The video opens with Ian entering a concert hall, where he’s about to perform solo on stage. Interspersed with his performance are snippets of real people with SMA celebrating milestones and enjoying life. Shane Burcaw and Hannah Aylward, who gained internet fame with their YouTube channel about life as an interabled couple, are shown in footage beaming on their wedding day.
In the video, Ian tapes a Polaroid to his microphone of himself as a child. When he was diagnosed just before his 15th birthday, he remembers worrying about what his adult life would look like. He sees the song as a “love letter” to that younger self.
“It’s just saying, ‘Life is going to be great. It’s going to be better than you can imagine,’” he said.
Genentech’s Evrysdi became the newest drug to enter the SMA space after winning FDA approval in August 2020 for patients two months and older. It competes against Biogen’s Spinraza and Novartis’ $2.1 million gene therapy Zolgensma.