Why actors with SMA deserve greater media representation, part 1

First in a series.

Maybe it (sadly) goes without saying, maybe it doesn’t, but if you Google “spinal muscular atrophy actor,” you won’t find a single SMA patient with a long filmography filled with recognizable projects.

You’ll find Alexa Dectis, the child actor turned entertainment lawyer and one of Forbes’ 30 Under 30 in 2022.

You’ll find the cast of “Most Likely Not To…,” a rom-com musical sponsored by the pharmaceutical company Genentech as part of its SMA My Way initiative.

You’ll find Sawsan Zakaria, an actress and model featured in a New York City fashion show with other patient advocates. The event was also part of SMA My Way.

You’ll find a handful of SMA influencers and actors in small community projects, I can promise.

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June 21, 2021 Columns by Brianna Albers

When Disability Representation Falls Short

But you won’t find an actor with SMA who’s starred in a summer blockbuster film, Oscar bait, cult classics, prime-time television, a streaming hit, and so on.

There are a plethora of reasons for that. Ableism is alive and well, affecting everything from perceived disinterest in disability representation to unhealthily long working hours. It’s only recently that we’ve seen an increase in stories about disabled characters onscreen, even if not all are played by disabled actors.

What if we could change that, though? Slowly but surely? What if we could question the status quo? What if an SMA patient, like myself, wants a recognizable filmography and is willing to train hard and advocate for accessible working conditions to get it?

And … action!

“You interest me very much, Sherry,” said Peter Sau, the head of performing arts and artistic development at Singaporean disability arts nonprofit ART:DIS. I’d consulted him about my desire to act, as I knew Singapore’s first disabled actor on a national drama, Timothy Lee, was under ART:DIS’ tutelage. Sau sat opposite me in one of their classrooms, scrolling through my résumé and articles. “I didn’t know you were interested in acting.”

“It was my dream as a child.” I smiled sheepishly and explained I’d given up on my aspirations until I saw disabled actors in wheelchairs such as Ruth Madeley and Marissa Bode. Everyone in Singapore’s disability advocacy scene knows me as a writer, researcher, and SMA advocate. My writing is how ART:DIS knew of me; they’d published my children’s book, “Loud Little Mermaids.”

Going from behind a screen to on it would be quite the pivot.

But if Madeley and Bode could be in “Doctor Who” and “Wicked,” respectively, two influential projects in mainstream culture, then maybe the ableism in show business has faded some. I wanted to see more disability representation in Singaporean and international media, to show other disabled aspiring actors they could fight for their dreams, too.

Core to my mission, I told Sau, is that I want to be good enough to audition for and acquire roles not originally conceived of as being for disabled actors.

“Unless a role is physically intensive, there’s no reason I can’t play any character of my age and gender. Disabled actors shouldn’t only get to play roles centered around their disability,” I said. “I refuse to be pigeonholed.”

Because why can’t I play the comedic best friend? Or a tragic Greek myth figure? Or the black sheep of an elite family? Or Elizabeth Bennet? (If a web series adaptation of “Pride and Prejudice” can win an Emmy, is an adaptation with an interabled cast that hard to imagine?) Or any other role you can think of?

Already, in terms of gender representation, we’ve seen magic happen if we’re willing to adapt roles originally intended for men for female actors. Michelle Yeoh’s Oscar win for best actress in “Everything Everywhere All at Once” is part of the proof.

Sau told me if I was indeed serious about acting, I ought to attend ART:DIS’ Beyond Display 2025 showcase — a series of capstone projects for ART:DIS’ current cohort of budding performance artists. That way, I could experience what the organization had to offer, and prepare to audition for the next cohort should I elect to join.

I agreed.

We didn’t expect that I’d join 2025’s cohort, essentially as a last-minute understudy trainee, for my friend Shalom Lim’s play. Though the role offered does center on a disability arc, it’s written by someone with muscular dystrophy and is emotionally complex and challenging enough that I was happy to learn it.

I will save the details of my acting training and what I’ve learned from rehearsing for Lim’s play for the next column in this series. For now, I’ll say this: My training makes me believe more than ever that SMA patients belong in mainstream films, series, and plays, Singaporean or international. And I’m going to do my best to prove it.

In my next column, I’ll share both how acting has benefited me and its challenges.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.