How I experienced inclusion (and didn’t) during my education

On Saturday, I presented at the Participation — Inclusion in Action Conference 2024, which was held in my home of Singapore for the first time.

My physiotherapist at the National University Hospital, who’s also a disability and healthcare researcher and one of the event’s key organizers, invited me to participate in February. In my talk, titled “Participation in Education: An Autoethnographic Exploration,” I shared my experiences navigating Singapore’s mainstream education system while living with Duchenne muscular dystrophy (DMD).

That’s been a challenging journey that taught me invaluable lessons in adaptation and advocacy. It began in my childhood and continues to shape my life profoundly.

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In kindergarten, when I could still walk, school was a place of joy and discovery. But I had significant barriers to access when I started elementary school. That’s when I began using a manual wheelchair, transitioning to a motorized one two years later.

Despite my principal making me feel welcome, the school underwent renovations midway through my first year, forcing everyone to relocate to an older, inaccessible building for two years. When my caregiver could no longer carry me up the stairs, my parents had to lease a wheelchair lift so I could continue attending classes.

When we returned to the newly rebuilt campus, I was horrified to find no wheelchair access to the school hall, where mandatory morning assemblies were held. Determined to overcome this obstacle, my family used my artwork to raise the $10,000 needed to build a ramp. Eventually, the school advisory committee covered the costs.

In high school, things improved. The campus had elevators, and the principal ensured I was included in all school activities.

However, systemic barriers persisted. Despite our early application and medical documentation, the Ministry of Education didn’t approve my exemption from the practical component of my science exam until weeks before the test. The ministry required an expensive occupational therapy assessment, which we had to finance ourselves.

Forging friendships was challenging because I couldn’t participate in many activities. Sitting out of physical education classes made bonding with peers hard, and their lack of awareness about DMD led to my unintended isolation. I often felt like an outsider, yearning to be included but unsure how to bridge the gap.

Being included

Despite these challenges, I found solace in learning. Art, history, literature, and mathematics became my refuge, influencing my career choices. At the post-secondary Temasek Polytechnic, I encountered supportive faculty and an inclusive campus environment, though systemic obstacles remained — including being graded lower for oral presentations as a result of my limited vocal stamina.

Continuing my studies at the Singapore Institute of Technology for a bachelor’s degree in criminology and security conferred by the University of Liverpool, I experienced a more inclusive environment. The university proactively discussed my needs before the term started, leading to a disability support plan. A plan of this sort highlights how vital it is for educational institutions to prioritize inclusion through their policies and facilities.

Throughout my education, I’ve learned that inclusion isn’t just about physical accessibility; it’s about fostering an environment where everyone feels valued and empowered to contribute. Acknowledging and accommodating our experiences can make a difference for those living with DMD.

My school years with DMD taught me about perseverance, the importance of community, and the profound impact of inclusion. Education is a fundamental part of our lives, and with proper support and understanding, it can be a place where people with disabilities can learn and thrive.

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.