Disability advocates have a meeting of the minds — and then in person
How a friendship with a fellow columnist has inspired my columns and activism
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Readers of my column are familiar with my Duchenne muscular dystrophy (DMD) story, which began with my diagnosis in February 1996. My older brother, Isaac, was diagnosed with DMD at birth in August 1991.
My family’s DMD story, however, dates back four decades from then, to 1951, when my mother’s oldest brother, Chee Kwong, was born. Chee Kwong arrived amid the post-World War II baby boom in Singapore. Our nation was then still under British rule, and Singapore’s founders struggled for independence.
My mother’s second-oldest brother, Philip, was born two years later. Both of these brothers had DMD, I believe, though they were never formally diagnosed due to Singapore’s lack of medical expertise at the time. The family physician labeled it a “muscle disease.”
A decade after my uncles succumbed to respiratory complications I believe were due to DMD, the late, pioneering disability rights activist in Singapore, Ron Chandran-Dudley, became an early leader of Disabled Peoples’ International in 1981. This was perhaps the dawn of disability as a societal issue in Singapore.
Fast forward more than 40 years, and Singapore now has the critical disability studies anthology, “Not Without Us: Perspectives on Disability and Inclusion in Singapore.”
Why it took so long for this book to happen is anyone’s guess. I met contributor and SMA News Today columnist Sherry Toh for the first time at the book’s launch in February, here at the National Library Board headquarters.
Rare disease survivors and Bionews columnists Shalom Lim, left, and Sherry Toh at the official launch of the critical disability studies anthology “Not Without Us: Perspectives on Disability and Inclusion in Singapore,” held Feb. 4 at the National Library Board headquarters in Singapore. (Courtesy of Shalom Lim)
A kindred spirit in the rare disease community
Sherry introduced me to Bionews, the parent company of SMA News Today, and invited me to apply to be a columnist for the company’s Muscular Dystrophy News in June 2022. I’ve been writing for the site since August of that year.
When I first got to know Sherry, I was near the end of my most challenging year, 2021, when I’d endured my worst depression crisis and was only beginning to recover from it.
I’d also just graduated from the University of Liverpool with a disappointing third-class honors degree in critical criminology. I then tried looking for a job and applied for two I was keen on, but I wasn’t shortlisted for either. With my abysmal degree grade and tough luck, I felt utterly lost and hopeless, without any direction in my life.
I realized I needed support from my community of like-minded disabled peers and disability allies.
Since I wasn’t going to have a job anytime soon, I decided to return to the “Disability Studies in Singapore” Facebook group, where I’d been active earlier in the year, to pick up where I’d left off with friends.
I met Sherry through that group in January 2022, after an editor of “Not Without Us,” Dr. Kuansong Victor Zhuang, read her writings online and invited her to join. He introduced her to the rest by sharing a recently published article she’d written for Rice Media. I read the piece from start to finish.
I was impressed by the critical ways she tied her lived experiences of disability to the wider angles of how disability functions as a social construct. I enjoyed how she critiqued the entrenched medical and moral construction of disability, which posits it as an innate flaw of the disabled individual. The essence of her works invites her readers to question prevailing normative assumptions on what it means to be disabled.
This brought back fonder memories of when I embarked on my undergraduate thesis, connecting my experiences of conversion-healing trauma as a disabled person in organized religion to the broader concepts of ableism in mainstream society.
Without hesitation, I garnered the courage to write her on Facebook Messenger. I introduced myself and affirmed her intellectual writing.
Soon after, we connected on WhatsApp and quickly became good friends, despite having met only online. I even volunteered to be interviewed by her, and roped in my mum, as well. It was a chance encounter of two like minds!
Since then, Sherry and I have become close friends. We also share several connections through the Muscular Dystrophy Association (Singapore), and we were even featured together in a CNA op-ed authored by a fellow disabled journalist.
Sherry will always be a dear friend to me. She’s given me the impetus to get busy living again.
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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