A new film reminds us of the importance of disability representation

A few days ago, my friend Reena Deen, a disabled independent filmmaker with complex post-traumatic stress disorder and dyslexia, shared with me that her film “The Damned Ones” was selected for the After Dark Program at the 2026 Torino Underground Cinefest.

“The Damned Ones” is a mystery thriller about a blind university student named Siti who goes missing. Her hard-of-hearing friend Laura tells police that Siti is trapped in a haunted, abandoned village. But Laura is a compulsive liar, leaving audiences questioning whether she’s telling the truth. Siti is played by my vision-impaired girlfriend, Amanda Yip.

All of the film’s disabled characters were played by actors with disabilities. I appear briefly near the end as an environmental professor. Being part of the production made me reflect on whose lived experiences make it to the screen.

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Rare disease stories deserve to be told

As someone living with Duchenne muscular dystrophy, I believe that rare neuromuscular conditions like mine deserve a place in disability-led storytelling.

I’ve explored storytelling through theater, too. I wrote my first play, “The Other Side,” about a young adult with muscular dystrophy who faces heart failure and contemplates assisted suicide. I had planned to perform the lead role, but rehearsals became unsustainable for my body and stamina, so I focused solely on writing the play.

I later appeared alongside Amanda in Reena’s film “Lov-Able,” which portrays two disabled partners navigating love and interdependence.

These experiences have made me think more deeply about what Duchenne representation could look like on screen. I rarely encounter stories reflecting life with a progressive neuromuscular condition like mine.

More than a diagnosis

Much of the language around Duchenne is medical: muscle weakness, respiratory support, heart function, and other realities. Those things matter, but they don’t describe an entire person.

I fall in love. I work. I create. I argue and laugh. I think about independence and my future. My ambitions evolve alongside my body.

That is what I want to see reflected on screen. Duchenne can be central to a character’s life without becoming their entire identity. People with Duchenne should also have opportunities to shape how our experiences are portrayed, whether as performers, writers, or collaborators.

Finding my place in disability-led media

I once thought stepping away from acting meant leaving performance behind. My cameo in “The Damned Ones” reminded me that creative participation doesn’t have to be all or nothing.

I don’t know what my next creative role will be. But I do know that I want to contribute to projects that place Duchenne at the center of the narrative and show the fuller lives behind the diagnosis.

I’m ready to help tell those stories.

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