Acknowledging my disability, and becoming an advocate

As a woman with a disability, figuring out what defines me, and how I define myself, has been a tricky thing. Some parts of my identity are easy – I’m a brunette, a Carnegie Mellon graduate, Hamilton obsessed, a public health researcher. But I also have Spinal Muscular Atrophy (SMA), a neuromuscular disease, and have never been able to walk. Does this make me disabled? A wheelchair user? A woman with a disability?

While I’ve always been a disability advocate in some way, simply out of necessity, for many years I hesitated to become more formally involved. I never tried to hide my disability (when you’re a kid, a purple and pink Mattel Barbie wheelchair tends to make you stick out), but I also wanted to make sure that people didn’t see me as just the girl in the wheelchair. So I studied engineering as an undergraduate, and got a job working in public health research. I worked hard to make sure that people saw me beyond my chair.

In some ways, that’s still really important to me. There is still a real stigma around disability – I see it all the time, in the way people stare at me, in the way they talk to the people around me instead of directly to me, in the way they jump out of my way when I’m driving down a sidewalk. So I do think it’s important that people see that I’m not defined by having SMA, and that people with disabilities have all kinds of interests and work in all types of fields.

But I’ve come to realize the importance of acknowledging my disability, as well. While I’m not defined by having a disability, it is an important part of me. It affects so many parts of my life. Most importantly, if others don’t understand how having a disability impacts my day-to-day life, they won’t understand how many things remain inaccessible to me. And if they don’t realize that, how can things ever change?

So I got to work. To become more involved as a formal disability advocate, I took all of my experiences and knowledge, and combined it with my desire to improve accessibility for people with disabilities. From my time at Carnegie Mellon, I take the knowledge that new and emerging technologies have huge potential for improving lives of people with disabilities. From my public health experience, I take the understanding that accessibility is a public health issue in addition to a civil rights one.

I’m now proud to say that yes, I’m a woman with a disability, and an advocate for accessibility and people with disabilities. Claiming this as part of my identity doesn’t take away from the rest of who I am, but rather, helps others understand how important accessibility is.

By Heather Tomko, Research Coordinator, University of Pittsburgh’s Graduate School of Public Health