DEFINING SMA: LIVING A LIFE OF ASPIRATION OVER INSPIRATION

I have always had an internal pressure to be *actually impressive*. Not inspiring, not motivational. Nope, I have always wanted to be realized for talents unrelated to my physical ability – for someone to say, “Wow, that’s actually impressive.”

When I look back on my years in high school and college, I realize that this need to prove something stemmed from lower expectations from teachers and peers. Implicit bias against disabled people has always held my awareness. When an able-bodied person sees a person coming at them in a wheelchair, a switch turns on. Something about the way they engage with the person with a physical disability changes. Whether it’s talking down (literally and metaphorically), avoiding eye contact, or cracking a joke to try and make the situation less uncomfortable (which ALWAYS works the opposite way it should), there is a fundamental difference in the way people treat those with disabilities, including their accomplishments in the classroom.

When I was five years old, I was diagnosed with Spinal Muscular Atrophy Type III. SMA is a rare, genetic, neuromuscular, and degenerative disease of various severities. For me, the use of my lower limbs is primarily affected. While I can walk around my house, I use a manual wheelchair to get around in the community.

Unlike other neuromuscular diseases, SMA doesn’t impact my cognitive or behavioral ability. However, I learned from a young age that the perception of my accomplishments was passed off as “inspiring” rather than true measures of motivation and work ethic.

It was as if, because I used a wheelchair to get around, I couldn’t possibly be expected to reach the honor roll or join a prestigious college. And if I did, then there must have been some way I had worked the system. Maybe I got extra time on a test, or perhaps I got in because I was a certain demographic of a student, a checkmark.

When it came to enrolling in college, I realized that my biggest hurdle wouldn’t be the stresses of midterms or narrowing down my major like most of my friends. Instead, it would be the physical obstacles that kept me up late at night — the impending doom of a snowstorm that would trap me inside, not being able to reach the food at the dining halls, the elevator breaking down. Here I listened to peers worry about getting an A or a B, and though I knew my grade would be high, I still had to worry about whether I would even make it to class.

College was the most challenging opportunity of my life. Not academically like most, but it was a real opportunity to learn to stretch my limits of independence – especially when my chair would break down on a hill, and my mom couldn’t drive out to fix it in five minutes. Like everyone else, I learned how to do laundry, go food shopping for myself, and manage my free time without restrictions. But unlike everyone else, I had to learn how to do these things in a way that was accessible, preserved energy, and was safe. But I learned these things because I had to, because not knowing how to do them in my case, wasn’t an option.

College also taught me that those with rare diseases, especially with physical disabilities, have to work twice as hard to get the recognition of becoming *actually impressive*. “Inspiring”, my least favorite word, has come to imply a person with a disability performing a task that an able-bodied person does every day. I am not inspiring for being an honors student, not for going on a date, not for living far from my parents.

Trying to avoid becoming the token disabled person in your inspiration requires becoming actually impressive. When you are not only remembered by peers for rolling around campus, but for the project you have contributed to or the positions of leadership you have held.

By no means do I think I have reached the peak of becoming actually impressive. But each day is a reminder to break the narrative of inspiration and be known for my brains and tenacity to solve problems bigger than how to do my own laundry.

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