Disability Doesn’t Always Look Like a Wheelchair: Quiet Battles with an Invisible Disability

I wrote a creative nonfiction piece about my experience living with an invisible motor disability. With the guidance of my advisor, Professor Sue Hertz, I explore how my disability has impacted my life, my symptoms, and society's perception of me as a person with a disability not apparent to others. My disability is called spinal muscular atrophy (SMA), and I have a type 3 case. SMA is a genetic disease where your body doesn’t produce a crucial protein needed to transmit messages from the brain to your muscles. While I may appear able-bodied since I can walk without a mobility aid, some tasks take much more energy out of me. Activities like going up several flights of stairs, standing for a long time, exercising, and walking long distances are challenging. In this thesis paper, I explore the complex emotions surrounding my disability. I want to share my challenges with the world, but I fear that people will only see me as my disability and now the funny, kind, intelligent, and determined person I am. These aspects of my life make my story unique and hopefully moving to readers. I plan to build on my readers' understanding by including research about the Americans with Disabilities Act and the history of the disability justice movement. This will help the reader understand how far we have come and how far we need to go to improve the lives of disabled folks.