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Spinal Muscular Atrophy

How Rebecca Van Fraassen Battles SMA Every Day to Live Life to the Fullest

spinal muscular atrophy rebecca van fraassen
spinal muscular atrophy rebecca van fraassen
Photo courtesy of Daniel Huszar

When Rebecca Van Fraassen was two years old she was diagnosed with spinal muscular atrophy (SMA), a rare genetic disorder. We spoke with Van Fraassen to learn about how living with SMA has impacted her as she grows older.

Tell us a little bit about yourself, your health journey, and your diagnosis.

I was born healthy. I rolled, I laughed, I crawled. It wasn’t until I was supposed to start to walk that my parents noticed something was different. My parents became concerned about why I was missing the milestones that a healthy child would have easily achieved. They brought me to see many doctors and specialists trying to find answers.

I was diagnosed with SMA at the age of two. From the age of four, my wheelchair has been a prosthesis for my legs. SMA interferes with my ability to get from place to place, and I depend on an electric wheelchair for my mobility.

What’s the biggest misconception about SMA?

I face challenges on a daily basis and I’m perceived differently by others because I depend on a wheelchair instead of my body. I’m often looked at with sympathy and confusion when I pass people on the street, or awe and shock when I reference anything about my social life. My perspective as an individual who relies on a wheelchair provides a distinct lens to more accurately reflect the complexity of the aesthetic–affective process of discriminatory behaviour that creates barriers of access to the environment.

In my lived experience, the primary barrier I face with my disability is prejudicial attitudes, a product of historical segregation and invisibility formed on the basis of aesthetic difference. It’s important to recognize that these barriers are constructed through systematic ideals, not the limitations of what’s possible for me and my body.

Have you seen your condition impact you differently as you get older?

Although I’ve always had some mobility, maintaining my independence has become increasingly challenging as I’ve gotten older. SMA is a disease that causes my muscles to slowly weaken over time, and it has taken away my ability to walk independently. My body has changed with my deteriorating muscles, giving me a curved spine and tilted hips from muscles that are too weak to support my body. It’s impossible to have any real health of body and mind if you are found alone trying to heal from the diseases that arise from too much civilization and too little empathy.

As humans, we share passivity and vulnerability through our embodied experiences, while our practices have ethical implications for each other. It’s important to bring attention to how my condition impacts me differently as I age. As an artist, my work questions the relationship between representation and embodiment, in order to recognize society as a cosmology of individuals being in constant flux.

What advice would you give to Canadians who have recently been diagnosed with SMA?

While the body is a vessel to society for able-bodied individuals, transmitting the physical self to the environments we inhabit, the wheelchair is the legs of my vessel to the surrounding world. My wheelchair is designed for my individual needs and is customized for my body. When I think about my life, it doesn’t incite direct associations with disability, but rather how I’m able to overcome the environmental limitations of society by my own body and mind.

I believe there is a greater power in understanding my illness, that by locating my body in space I’m able to recognize my ability to act on the world. As an individual, I hold my own power to seize life itself and to define my capabilities beyond the barriers of my environment.

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