Nearly three years after its debut, the Genentech-backed song “Spaces” made it to perhaps its biggest stage yet.
James Ian, the singer-songwriter behind the tune, performed “Spaces” at an event held Monday at the White House in honor of July’s Disability Pride Month, only a few days after the 34th anniversary of the Americans With Disabilities Act. Ian’s performance followed a series of presentations about policy changes in the works to better serve people with disabilities and a panel discussion with disability advocates about taking action to combat ableism.
As he closed out the day’s events, Ian introduced the song by noting, “A lot of the panelists up here mentioned disabled people occupying spaces and being in various spaces.”
“‘Spaces’ is a first-of-its-kind song that highlights the beauty and the vibrance of the spinal muscular atrophy community and the larger disability communities,” he continued. “Media representation of disability is often dismal and inaccurate, and I think that the song and the music video do a very good job of representing disability accurately because it shows disabled joy and pride, and it puts it in front of the world.”
He added, “I’m very, very proud to have been the songwriter and the vocalist of ‘Spaces.’ Thank you to everyone who made today possible, and I’m very, very honored to perform for you all.”
“Spaces” made its debut in late 2021, after Genentech joined forces with Ian, who has spinal muscular atrophy, and other members of the SMA community to create the song and its accompanying music video.
The song was written to empower people with SMA and other disabilities to proudly take up space and leave their marks on the world. It includes lyrics like, “I’m proud of who I am, no one I’d rather be; I am worthy of anything and everything.”
Though Genentech commissioned the song not long after its Evrysdi earned FDA approval in August 2020 to help treat people of all ages with SMA and was inspired by comments from patients on its “SMA My Way” patient support website, the company has said that “Spaces” isn’t explicitly aimed at boosting awareness of Evrysdi, Genentech or even SMA. Instead, it’s designed to push back on traditional media portrayals of people with disabilities, the source of many frustrated comments on the “SMA My Way” site.
“We really wanted to help create something for the disabled community by the disabled community,” Michael Dunn, senior director of marketing at Genentech, previously told Fierce Pharma Marketing.
The song is a certified hit, with hundreds of thousands of views on YouTube alone, and has also become something of an anthem to empower people with disabilities: Before making its White House debut this week, Ian performed “Spaces” at the closing ceremony of the 2022 Special Olympics USA Games in Orlando, Florida.