For most of my life, Duchenne muscular dystrophy has defined how I navigate the world. Duchenne is a genetic condition that causes progressive muscle loss. Over time, it weakens the arms, legs, breathing muscles, and heart.
Many adults with Duchenne, including me, use wheelchairs and rely on a ventilator to breathe. Daily life often involves planning around energy levels, medical equipment, and accessibility barriers.
Living with Duchenne also means encountering systems that weren’t created with people like us in mind. A hospital corridor may be too narrow for a wheelchair. A digital form might not work with assistive technology. A public service may assume that every person can walk, see clearly, or breathe without support.
After decades of facing these barriers here in Singapore, I began asking a simple question: What would happen if the people affected by accessibility problems helped design the solutions?
From an art studio to an accessibility consultancy
This question sits at the center of Rebirth Ensemble, the accessibility consultancy that my partner, Amanda Yip, and I co-founded in 2024. Amanda lives with retinal degeneration, a progressive eye condition that gradually reduces vision over time. Our lived experiences with disability shaped the company’s direction.
Rebirth Ensemble did not start as a consultancy. We began as a disability-led art studio that sought to employ disabled artists, before shifting to making accessible art for people with vision impairments. That early work showed us something unexpected: Accessibility is not only about accommodation. It can improve the experience for everyone.
Today, we’re making a deliberate pivot. Rebirth Ensemble has expanded beyond the arts into a design consultancy and innovation studio that advises businesses, institutions, and nonprofits on accessibility, inclusive design, and service improvement.
Singapore has several national policies encouraging greater inclusion. One of them is the Enabling Masterplan 2030, the country’s long-term government strategy to improve opportunities and participation for disabled people. Many organizations now face new expectations tied to accessibility standards, sustainability reporting, and disability inclusion.
Turning Duchenne experience into practical solutions
My life with Duchenne changed how I see those challenges. When you depend on a wheelchair and assisted breathing, design decisions stop being theoretical. The height of a counter, the layout of a website, and the path through a hospital all influence independence.
Years of moving through inaccessible systems taught me to observe details others might overlook. Those lessons now shape the consulting work we do.
Our projects may involve reviewing a hospital’s patient journey to help visually impaired patients navigate it independently. Other assignments will focus on helping organizations redesign services so that disabled customers are not excluded.
For me, this shift carries meaning beyond business. Duchenne has taken away many physical abilities throughout my life. Yet, it’s given me a perspective few consultants possess.
My body forced me to study systems closely. Each barrier became a lesson, and each workaround became a design insight.
Duchenne still travels with me everywhere I go. These days, it also sits quietly beside me in my work, guiding the ideas I hope will make the next person’s path a little easier.
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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