Back in March, I wrote about how living with Duchenne muscular dystrophy (DMD) has shaped my perspective on accessible design. After decades of moving through systems that were not built with people like me in mind, I had come to appreciate how disability can offer valuable insights into solving accessibility challenges.
A couple of months later, I found myself revisiting that idea from a different angle. On May 20, I was invited to speak at a Global Accessibility Awareness Day event organized by 55 Minutes, a Singapore-based user experience design studio. Their mission resonated with me because it mirrors much of what my partner, Amanda, and I hope to achieve through Rebirth Ensemble, our disability-led art studio and design consultancy that seeks to make fine art more accessible to everyone by engaging senses beyond sight.
Amanda is vision-impaired, while I have DMD. For readers unfamiliar with DMD, it is a genetic condition that causes progressive loss of muscle tissue. We’ve spent our whole lives adapting to environments, services, and experiences designed without disabled people in mind.
Today, I use a wheelchair and a BiPAP ventilator and rely on round-the-clock monitoring and support from my caregivers just to get by. Accessibility isn’t a professional interest I can switch on and off, as it affects almost every decision I make.
From designing for to designing with disabled minds
During the panel discussion, an audience member asked how disabled people could be more involved in the design process. The question resonated with me as it touched on something I’ve experienced many times before. Accessibility barriers aren’t created deliberately. Most exist because decision-makers didn’t understand our needs well enough to make the right choices.
A hospital appointment system may assume that every patient can communicate in the same way. An event organizer may think that every wheelchair user has identical needs. A website may be visually functional yet unusable for someone who is fully dependent on screen readers.
Duchenne has taught me that disability is never one-size-fits-all. The needs of someone with a vision impairment differ from mine. My physical support needs aren’t the same as another wheelchair user’s. Accessibility becomes stronger when people with lived experience are part of the conversation from the beginning.
The perspective Duchenne has given me
One idea from the panel stayed with me after the event ended.
For most of my life, I’ve had to adapt to systems designed by others. Whether in healthcare, housing, education, employment, or transport, I’ve been expected to fit into environments that weren’t designed with Duchenne in mind. Yet those experiences have also given me a perspective I’d never have developed otherwise.
Because my body depends on accessibility for survival, I notice details others may overlook. I think differently about independence, participation, safety, and belonging. That is why I believe accessibility works best when disabled people are treated not only as beneficiaries but also as collaborators.
My life with Duchenne has taught me that accessible design isn’t about speaking for disabled people, but about listening to them first and working alongside them toward a solution that works for them. When this happens, it stops being an accommodation and starts becoming a partnership.
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.
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