Singer-songwriter James Ian, who has spinal muscular atrophy (SMA), performed his song “Spaces” at an event celebrating people with disabilities at the White House on Monday afternoon.
The event commemorated Disability Pride Month and came just days after the 34th anniversary of the passage of the Americans with Disabilities Act.
Ian joined fellow patient advocates at the White House for a ceremony discussing disability pride and the importance of promoting opportunity, independence and respect for all people with disabilities.
Other notable speakers included Kelly Buckland, Disability Policy Advisor at the Department of Transportation, Carla Gilbride, Counsel at the Equal Employment Opportunity Commission, Rachel Patterson, Director of Disability Policy at the White House Domestic Policy Council, and Sachin Pavithran, Executive Director of the U.S. Access Board.
The song “Spaces” has long been an anthem for Ian’s community. The song was co-written with others living with SMA and contains a message about appropriate representation for the wider disability community.
Ian previously performed “Spaces” at the Closing Ceremony of the 2022 Special Olympics USA Games.
This project was made possible through Genentech’s SMA My Way program, a community collaboration led by the pharmaceutical company to help all people affected by the disease.
SMA is a rare, progressive neuromuscular disease that can affect basic life functions such as breathing, swallowing and walking. The disease affects 10,000 to 25,000 adults and children in the United States.
However, like most other disabilities, it is chronically misunderstood and often portrayed in harmful ways by the media.
Both the performance and the song itself emphasize the importance of embracing people with disabilities, rather than hiding them away or treating them like a burden.
Ian explained that the purpose of the song is to show others that people living with disabilities exist and are not afraid to be out in public.
“We’re loud, we’re proud, we’re bold, and we’re taking up space in a good way,” he said. “We want people to appreciate that and take notice.”
Ian also detailed the impact of abusive and insensitive portrayals of disabled people in the media, highlighting the negative impact this can have on an individual’s self-esteem.
He explained that he had already internalized much of the ableism he witnessed during his childhood after receiving his diagnosis at age 15. As a result, he quickly assumed his life was over because of his diagnosis, but that was far from reality.
Since then, he has realized that many people will experience the disorder, so he no longer sees it as a bad or good thing, but rather it is just a way of life.
“We all deserve a place in this world,” he said. “We all deserve the freedom to pursue our dreams, whether we have a disability or not.”
The performance also serves as a kind of kickoff for SMA Awareness Month in August, during which the community comes together to celebrate one another and educate the public about the disease.