How art fosters a sense of belonging in my life with Duchenne
I've discovered that belonging is built through simple presence
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On Jan. 31, I visited the former Supreme Court Foyer at the National Gallery Singapore (NGS) for the final Artsplaining session of Light to Night Singapore 2026.
NGS is a leading visual arts museum with the largest collection of Southeast Asian modern art. Artsplaining is its program designed to make the arts accessible to everyone. Light to Night Singapore, an annual visual arts festival, takes place in the Civic District as part of Singapore Art Week, our country’s signature visual arts season that celebrates arts and culture across both physical and digital spaces.
My girlfriend, Amanda Yip, a vision-impaired accessible arts practitioner and the lead artist of Rebirth Ensemble, the disability-led accessible fine art studio we co-founded, spoke alongside Diana Tay, a fine art conservator and the founder of Beneath Art Research and Conservation Labs, a research-driven conservation studio.
Life in layers
I live with Duchenne muscular dystrophy, a genetic condition that gradually changes how my muscles work. It shapes how I move, breathe, and organize my life. I use a wheelchair full time and rely on a BiPAP ventilator around the clock.
Leaving the house requires preparation: arranging transport, coordinating with my caregiver, and carefully planning my days so I can be fully present once I arrive.
That evening at NGS, Amanda spoke about experiencing art through touch rather than just sight. The Gallery’s Hands-On Learning and Development Collection adapts paintings into tactile versions, allowing visitors with visual impairments to explore them through raised textures and audio guides.
Listening to her, I recognized something familiar: Life with Duchenne is also lived in layers. I once walked independently. I once drew for hours, never thinking about stamina. As my body changed, I adjusted and found new rhythms.
Sitting there, I was aware of how visible I am. An adult with a ventilator attached to his wheelchair is still an uncommon sight in cultural spaces, especially in Singapore, where suitable transport isn’t always available for those with advanced muscular dystrophy. Yet I felt calm, grounded, and fully present.
My older brother, Isaac, died of Duchenne-related heart failure at age 28. I am 30 now, a number that carries meaning. Being out in public spaces is personal, not performative.
People with Duchenne are often spoken about in hospitals and awareness campaigns. We are less often seen simply living, listening, loving art, and supporting the people we care about. That evening reminded me that belonging is built through simple presence.
Art beyond sight invites people to experience the world differently. Living with Duchenne has taught me to experience life differently, too. At NGS that night, I wasn’t overcoming anything. I was simply there. And that felt right.
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.
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