How AI can support my daily life with Duchenne muscular dystrophy
It's crucial for disabled voices to help shape the future of AI
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On Feb. 19, my girlfriend, Amanda, and I presented at a seminar titled “AI in Social Work” at the National University of Singapore’s School of Computing, on behalf of our accessible art studio, Rebirth Ensemble. It explored how we can harness artificial intelligence (AI) to drive social impact by supporting accessibility innovations for vulnerable populations. We were invited by Quek Khor Ping, my internship supervisor at IBM’s Singapore office a dozen years ago, and now a university director, faculty member, and fellow.
For me, it was about my daily life with Duchenne muscular dystrophy, not an abstract discussion. Duchenne is a genetic condition that causes progressive muscle weakness, affecting mobility and respiratory and cardiac function over time.
By adulthood, most of us depend on wheelchairs, ventilators, and round-the-clock care to survive. Technology has become intertwined with my existence, so this conversation about AI felt deeply personal.
How technology supports life with Duchenne
The seminar brought together students pursuing a master’s module in AI who were interested in learning more about how the technology can be used for social good. Social work plays a critical role in hospital discharge planning, disability services, and community support systems, especially in Singapore’s super-aged society. AI is now entering those spaces.
I depend on a BiPAP ventilator 24/7 to support my breathing. I depend on digital tools to send WhatsApp messages on my phone. When people talk about AI supporting people with disabilities, I am living proof of what that can look like in reality and in practice.
During the seminar, we discussed speech recognition tools being trained to understand atypical speech patterns. For someone like me who lives with Duchenne-linked restrictive lung disease, clarity of speech can fluctuate.
The idea that technology can learn and adapt to different voices renewed my hope. Communication is dignity. When your body changes, your voice shouldn’t disappear with it.
Why disabled voices must shape AI
In Singapore, nondisabled government and social services leaders typically form task forces that consult the disabled community to design and implement disability policies.
Yet, tokenistic consultation without authentic participation and genuine representation of disabled voices isn’t true inclusion. To belong in society, people with disabilities must have a seat at the table to shape the tools that could further entrench ableism and systemic inequalities if schools and workplaces don’t use them responsibly. This is best encapsulated by the guiding principle of the global disability rights movement: “Nothing About Us Without Us.”
Living with Duchenne has taught me that true independence doesn’t mean doing everything ourselves. To me, it means having the right support at the right time. AI cannot replace human care, nor should it. My caregivers, doctors, and family remain central to my life.
That said, smart tools can reduce strain, prevent burnout, and expand access to communication. I often think of my late brother, Isaac, who also lived with Duchenne and died at 28. He didn’t have access to many of the digital supports I now use daily. Every advancement feels like a quiet continuation of his story.
Technology will keep evolving, and Duchenne will keep progressing in my body. What matters is that people with disabilities remain seen, heard, and valued in these conversations. If AI is to truly serve humanity, its developers must listen to those who are navigating and adapting to muscle loss, ventilators, and fragile hearts.
For as long as I still have breath, I will keep contributing my lived experience and voice to today’s AI-disrupted future alongside Duchenne, my lifelong partner in crime.
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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