Meet the OZY Genius Who’s Making Arts Programs More Accessible

OZY Genius Award winner Grace Fisher caught a rare disease that paralyzed her from the neck down. Is it stopping her? Not at all.

Why you should care

Because life is full of surprises — it's how you handle them that makes the difference.

At her 17th birthday party, things had started to go south.

“When my friends began to arrive at my house, I started to experience extreme pain in my neck and tingling in my arms,” Grace Fisher recalls. A super active kid whose penchant for music, both playing and listening, dancing and outdoor sports (mostly surfing), made her pretty much like the rest of her Santa Barbara, California, peers. Until the party.

“It was unlike any pain I’d ever had before,” says Fisher. The fact that both of her parents are physical therapists — and her mother specializes in neurological disorders — helped after she had been rushed to the emergency room and was told she was just having a panic attack. Debbie Fisher, her mom, demanded that her daughter be seen immediately, and, post-catheter and breathing tube, the word came down. Fisher had what news reports would later call a “mystery illness” but that medical professionals had a name for: acute flaccid myelitis (AFM), a rare neurologic disease that affects the body much like polio.

“She’s probably fine, she’ll be back in an hour,” is what people at the party were thinking, according to Fisher’s younger sister Emily. But AFM is not an hourlong disease. She would spend five weeks in the hospital, becoming the 101st patient ever diagnosed with AFM, before being transferred to a hospital in Colorado that specialized in spinal cord and brain injuries. Doctors had said that her spinal cord looked like acid had been poured on it.

“The arts have that special power, and it has that effect on everyone who is exposed to them.”

Grace Fisher

To put a finer point on it: The prognosis was grim.

But while she was ensconced at Craig Hospital in Denver, noted filmmaker (and family friend) Lynn Montgomery decided to make a short film about Fisher. Called? Amazing Grace, naturally.

“There was truly an angelic incandescence,” says Montgomery about being around Fisher, who often spent time at the Montgomerys’ house, given that their daughters were friends. “Gracie glowed. Gracie still glows.”

Mindful of the movie and wanting to participate, Fisher had asked if she could play the song “Amazing Grace” for the soundtrack. Classically trained in piano and cello, Fisher had also picked up the guitar as a teenager. And got good at it. For a little perspective: She was good enough that during her rehab at Craig Hospital, she was accepted to the Berklee College of Music in Boston for guitar.

“Music lives within me,” Fisher says. Which explains what motivated her to play for Montgomery’s movie, though by that point she was paralyzed from the neck down. But given a keyboard and a wand-like stick that she could control with her mouth, Fisher could make her way through the song.

“Spinal cord injury rehab is regimented, difficult, trying,” says Fisher, who is now back at home in Santa Barbara. But “it was in those moments I was creating that I didn’t feel broken. Art and music ground you in the present and proclaim your humanity.” Which is precisely what sparked Fisher’s eureka moment: People with disabilities could benefit from arts programs. Because playing an instrument is hard no matter who you are, and the focus necessary to learn and master the instrument takes you beyond the overriding reality of your day-to-day existence being disabled.

“The arts have that special power and it has that effect on everyone who is exposed to them,” Fisher says. So she decided to start the Grace Fisher Foundation (GFF) with a fairly singular mission: to bring arts programming to people with disabilities. At the same time, she was working toward graduating from University of California, Santa Barbara’s College of Creative Studies with a degree in music composition.

Then COVID-19 hit and her foundation work had to be completely reconfigured — a monkey wrench that she was ready for. Fisher and her foundation produced an animated short that featured her artwork, one of her original compositions and artwork from kids with disabilities who were attending GFF programs.

Side view of disabled musician with headphones in recording studio

The Grace Fisher Foundation has a fairly singular mission: To bring arts programming to people with disabilities.

Source Getty

The short is hitting film festivals, along with Montgomery’s film — though in another strange twist in a story full of strange twists, Montgomery was stricken while filming. After an episode of heart and respiratory failure, pancreatitis, neuropathy and a large thrombus in her aorta, Montgomery was rushed to the hospital.

“I had already started filming Gracie and I was determined to finish the project,” says Montgomery. So, anytime she could get out of bed for an hour, she filmed. One hour turned into two and then three. “Gracie was my inspiration to not let my illness get in the way of creativity.”

Amazing Grace premiered to standing ovations at the Santa Barbara Film Festival in January 2020. Montgomery has now 95% recovered. And Fisher? After winning the 2021 OZY Genius Award and the cash grant to continue her foundation’s work, she is soldiering on toward a future that’s uncertain but will certainly be full of the kind of disability advocacy that got her here.

“I want to establish a physical location in Santa Barbara to house all our programs. I want to continue to increase and improve our art, dance and music programs and create and produce accessible recreation areas like parks, gardens, trails and beaches,” Fisher says. “My only limitation will be my imagination.”

Which, as vast as it seems to be, is very likely going to be a continued source of surprises.