Most Likely Not To… is a romantic comedy musical with a twist: it was written by and stars people who have spinal muscular atrophy (SMA), a neuromuscular disorder that leads to loss of motor neurons in the spinal cord, causing muscle weakness and wasting. Many members of the cast are successful singer-songwriters, models, and actors in real life.
The musical, which is sponsored by the drug company Genentech through its SMA MY Way program, debuted in New York City at the Times Center in February and is now available for streaming at MostLikelyNotTo.com. The plot revolves around a famous fashion designer of adaptable clothing who flies home for her 20th high school reunion. During the flight, she comforts a fellow passenger who’s terrified of turbulence. It turns out the passenger went to high school with the fashion designer and had a huge crush on her when he was a senior and she was a sophomore. “It’s a comedic subversive take on life with a disability,” says Adam Pryor, creative director of SMA MY Way.
During her travels, the fashion designer endures several indignities that ring true for many people with disabilities. Airline staff don’t always speak directly to her and the chance that her wheelchair might break in the hold of the plane haunts the journey. Otherwise, the show portrays people with SMA just as they are, living joyful and rewarding lives.
“Any time a story, picture, video, or performance breaks stereotypes and stigma about disability, that’s great,” says Seth Keller, MD, FAAN, a neurologist in Lumberton, NJ, who treats patients with SMA. “Seeing people who are disabled in a realistic light is so important.”
The actors agree. “Disability is usually portrayed negatively either as the butt of jokes or to be pitied,” says James Ian, a singer-songwriter and fashion model. “In our play, we show people with disabilities who are leading full lives.” Joel Rodriguez, who uses a wheelchair, plays the former class president in the musical. “I’m glad to be an example of someone with a disability,” he says. “Regardless of your specific circumstances, you can still pursue your passion and be successful.”
SMA My Way launched two earlier projects: a song called Spaces by Ian, who performed it in Most Likely Not To… with Rodriguez; and a fashion show featuring people with SMA in stylish adaptive clothing.
“Theatre is a perfect medium to showcase the creativity and talents of this amazing community,” says Pryor. “It elevates their voices and advances the conversation around disability.”
Learn more about spinal muscular atrophy at Brain & Life's Disorder Resource Center. For resources related to SMA, visit Cure SMA, SMA Foundation, the National Organization for Rare Disorders, or the National Institute of Neurological Disorders and Stroke.
