I’m waving goodbye to acting, but I’m not about to exit the stage

When I was 13 and fresh from spinal fusion surgery, I sat in a West End theater in London with my family, watching “Les Misérables.” The music stirred my soul and, for a fleeting moment, I imagined myself on stage.

But that dream quickly faded. Accessibility barriers at school here in Singapore stopped me from joining a production, and later, low enrollment stopped me from further studying literature. It felt as if the stage were closed to me before I even had the chance to step on it.

Sixteen years later, I finally got my first taste of acting. Last November, as part of the ART:DIS’ BEYOND DIS:PLAY program, I performed a brief monologue at a development showcase. ART:DIS is a Singaporean nonprofit that’s dedicated to empowering disabled artists, and BEYOND DIS:PLAY is its artists-in-training program for those in the performing arts.

The opportunity was exciting, but the rehearsals were grueling. With Duchenne muscular dystrophy, compounded by attention-deficit/hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD), I realized the grind of acting wasn’t sustainable for me.

This month, after physical burnout and mental distress, I stepped back from a co-lead role in my graduating showcase. It’s a live staging of “The Other Side,” the first script I wrote with the unwavering support of my mentors, all professional theater makers themselves.

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Inspiration from disabled-led theater in the UK

The decision is a bittersweet one, especially after hearing about a theater collaborator recruitment for a live stage production at Cripping Breath, a disability-led project at the University of Sheffield in England that rethinks the meaning of breathing and ventilation through disabled people’s lived experiences and creativity. Directed by disabled theater-maker Jamie Hale, it reimagines “Romeo and Juliet” with ventilated protagonists.

As a 24/7 user of a BiPAP ventilator, I was moved to learn that such a production is possible. Because the residency requires the right to work in the U.K., I cannot join, but it affirmed to me that disabled people can and should center themselves on stage.

As much as I admire that work, however, I recognize my own limits. Acting full time isn’t compatible with my health and well-being, but storytelling is still very much within my grasp. Theater is more than performance. It’s also writing, direction, and design.

Crafting stories that need to be told

That’s why I’m embracing playwriting. “The Other Side” explores the themes of autonomy, morality, and love in a near-future Singapore through the eyes of a young adult with a rare and fatal neuromuscular condition. The play is deeply personal. In giving voice to the characters’ struggle between living and letting go, I’ve processed my own fears and hopes.

Writing allows me to contribute to theater without jeopardizing my well-being, while still pushing audiences to reflect on dignity, autonomy, and love in the face of disability.

So as I wave goodbye to my childhood dream of being an actor, I feel relief rather than regret. Playwriting gives me both freedom and sustainability as it allows me to build a creative legacy that reflects the lived reality of ventilated people like me. Acting once seemed like the only way to step into the spotlight, but I now know that words on a page can shine just as brightly.

For those of us living with Duchenne MD, our voices don’t need to be confined to what others expect from us. Even if the stage isn’t always accessible, the stories we write can carry us there.

Note: Muscular Dystrophy 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 another 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 Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.