A DMD survivor’s perspective on the coming-of-age movie ‘CODA’

One cozy night last September, my parents and I relaxed in the living room after dinner. My father turned to me and asked for a movie recommendation. It’d been awhile since we’d done this — our cherished family tradition of watching movies together on weekend evenings.

In 2019, we lost my brother, Isaac, to Duchenne muscular dystrophy (DMD), and this loss reshaped our lives profoundly, leaving a void. In addition, my sister, Jane, had recently moved out to live on her own. We missed her dearly but saw this 2022 evening as an opportunity to bring back a nostalgic habit.

The movie “CODA” popped into my mind. I hadn’t watched it yet, but I knew it was a poignant story about a teenage girl who’s the only hearing member of her Deaf family. Intrigued, we decided to go for it. It was a heart-rending 111 minutes that utterly transformed me.

“CODA” had won Best Picture at the 94th Academy Awards that year. I’d also heard about it at the National Gallery Singapore during May, when I attended an accessibility and inclusion master class organized by ART:DIS, a Singapore organization that is among the first to serve the artistic development of members of the disabled community.

But nothing could’ve prepared me for how much I’d relate to the film’s protagonist, Ruby Rossi, played by Emilia Jones.

Recommended Reading

April 26, 2023 Columns by Shalom Lim

An important meeting helps me still believe in the impossible

Experiencing disability from both sides

You see, I, like my brother, live with DMD. I learned about my condition at a young age, but it didn’t truly sink in until I faced my first medical crisis in high school. Despite my situation, I didn’t see myself as disabled; still, I craved a connection with Isaac, my nonverbal, autistic brother who also had DMD.

As I watched Ruby grapple with being the sole hearing member of her family, I felt an echo of my journey. She balances helping her family with pursuing her passion for singing. Similarly, I’d found myself advocating for Isaac’s needs and working against societal norms that attempted to limit what someone with DMD could aspire to.

Disability isn’t just a physical or sensory impairment; it can affect our social emotions. I see that in Ruby’s struggle and in my own life, where the label of disabled has often been more constraining than my DMD itself. That’s an experience I share with my loved ones.

‘CODA’: Not just an Oscar-winning film

The path to acceptance is rocky, particularly when battling something as formidable as DMD. Watching “CODA” sparked a period of deep reflection, in which I revisited my role as Isaac’s voice to the world. As life has gone on, bringing me new joys like a rewarding job and watching my friend Sky’s BEYOND DIS:PLAY (an inclusive theater program run by ART:DIS) graduation showcase, I pondered how to keep Isaac’s memory alive.

Then it clicked. Inspired by Ruby’s powerful audition in a defining scene in “CODA,” I auditioned for the second cohort of BEYOND DIS:PLAY last month. As I entered the stage to perform the same song Ruby had sung, I felt a sense of peace. I saw life from both sides — through the lens of grief and the promise of new hope.

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 or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.