Despite the limitations of SMA, I’m still capable of many things
When I was in college, I had a professor doubt my abilities because I was disabled. I started struggling in their class early in the semester, so I went to their office for two reasons: to get extra help and prove I was determined (and doing what I could) to excel in the class.
Instead, the professor undermined what I was capable of and claimed the class was beyond my comprehension. Because of my disability, they assumed I’d never be able to hold a job or amount to anything. Great logic, right? (That was sarcasm.)
I left their office in tears. I was just a college student trying to figure out how to prove my abilities while living with a disease that robs me of them. I felt lost and worried that college wasn’t the right fit for me after all.
Sadly, this wasn’t the first or last time I encountered ignorance about life with SMA or disability in general. I’ve had strangers discount my abilities simply upon observing that I’m in a wheelchair. I’ve had people infantilize me and speak to me as though I’m an infant and my wheelchair is a stroller. I’ve had people pay no regard to my existence and ask the person with me to answer on my behalf — even after seeing that I’m capable of answering for myself. The list goes on.
To a degree, I understand their position. Every person with SMA has different physical abilities. Some may need others to speak on their behalf. Others may need people to take a gentler approach when addressing them. At first glance, a stranger can’t determine these necessities, which I understand.
The problem lies in how disabled people try to prove themselves, but still get written off as incapable. Disability doesn’t always mean inability. I wish the narrative around this tendency were different.
The SMA community brings great value to the table. We’re hardworking, talented, and worthy of the same opportunities and experiences as everyone else.
This misconception that disability means inability leaves so much untapped potential for flourishing relationships, jobs, friendships, and more. And when this misconception gets construed as a reality, our opportunities become limited.
In my previous column, I wrote about how I’m dependent on others for my physical needs. Even so, that doesn’t negate that I’m still capable of things. I can write these columns, hold a job, manage life with SMA by ordering medications and corresponding with my doctors, and so much more.
My life doesn’t end at my inabilities. It’s time we challenge this notion and create a more inclusive world.
Note: SMA 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 other 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 SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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