31 Days of SMA: Learning to Embrace SMA (Again!) in My Job Hunt

Photo courtesy of Madison Parrotta

Day 18 of 31

This is Madison Parrotta’s story:

From as early as I can recall, having SMA felt like being on the world’s largest Ferris wheel. There were ups and down, and plateaus in between, and being stuck in one place for too long meant that I was only rushing toward another place faster than I realized, all at the mercy of SMA.

Nothing so far in my life has made me realize that this extended metaphor is slightly off-kilter as much as my hunt for a fulfilling job.

Throughout my college career, I was confident that I would find a job I was incredibly passionate about just as easily as I could sign my name. I told myself that I would work in an office like any other nondisabled person, that the only thing I would need would be a personal care assistant by my side. I didn’t want to work remotely because I thought it would be fun to socialize and be around other passionate people. My disability would have nothing to do with me getting hired; hiring managers would see me for my smarts and the person I was rather than the physical presentations of my disability.

I thought it was that easy, but of course, I was wrong.

Not only did I have trouble getting hired at all because of blatant ableism, but I was also at the bottom of the Ferris wheel because my SMA was progressing. Something I thought to be so simple a year before — signing my own name — now took 10 minutes and used up a significant amount of precious energy. This would make it harder for me to work. I often fell prey to internalized ableism and asked myself what the point in even looking for a job was. Many nondisabled people seemed to think disabled people were inferior and weak, and I knew I couldn’t change their minds.

For a short time I gave up on what I wanted. But then the pandemic happened and I realized two things: I could have a fulfilling career in a remote working world, and my disability was an asset. I was tired of hiding who I was, so I came right out and wrote about why disabled representation was important to me in my cover letters and talked about it during interviews. My SMA is a part of who I am, and I’m better for it, but it’s not the only part.

Maybe I am still on that gigantic Ferris wheel, but now I’m helping run it.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.