My Disability

I have a nueromuscular disease called Spinal Muscular Atrophy (SMA) type II. Here is a brief description from FightSMA.org:

Spinal Muscular Atrophy (SMA) refers to a group of diseases which affect the motor neurons of the spinal cord and brain stem. These critically important cells are responsible for supplying electrical and chemical messages to muscle cells. Without the proper input from the motor neurons, muscle cells can not function properly. The muscle cells will, therefore, become much smaller (atrophy) and will produce symptoms of muscle weakness. — Robert T. Leshner, M.D.

The “type II” bit refers to the severity of the disease with type I being the most severe and type III (or type IV) being the least severe. Type I affects infants, who never walk or stand, and who usually develop problems swallowing and breathing. SMA is fatal, especially to people with type I. People with type II can live close to a normal life span if properly cared for. SMA was chosen by the National Institute of Health to “be a model for translational research because it is the closest to a treatment or cure out of all 300 neurological disorders.” (FightSMA.org)

In the beginning

SMA gets worse over time. When I was very young, I could stand and even walk a little by holding on to a sturdy piece of furniture. I can barely remember this. I got my first power chair when I was three years old.

I went to school at the proper time. The Jackson Public School district wanted to enroll me in special education courses. I didn’t.

In early elementary school, I could raise my hand. When I got to about fourth grade, I couldn’t. My grandfather traced my hand and cut out a wooden hand shaped like mine. He put it on the end of a stick he made. It had a nice handle. I used it until kids took it from me and broke it in middle school.

I switched to a private school for seventh grade, and high school was good. I hit a few bumps in the road, but nothing bad.

My high school graduation made the news. I was one of four seniors. I had my first real part-time job that summer doing data entry work once a week. During my senior year, my Mom and family friend Donna helped me prepare for what would be the biggest change in the way I lived: college.

Thankfully, I was able to get in to an accessible, on-campus apartment. I’ve been in the same room since I started. It is close enough to the main part of campus that I can go to my classes on the sidewalk.

I don’t know that I could have undertaken this task without the help of my family, friends, and the number of organizations that helped me, including Mississippi State’s Disability Support Services.

The Bulldog Nation

It was at Mississippi State that I became more aware of my disability. At my small, private high school, everyone knew me. It wasn’t like seeing strangers everyday. And there were so many buildings. Mississippi State has one of the largest campuses in the United States.

One day, I was admiring the view on the Drill Field of central campus. Student government candidates were out campaigning. One of the candidates running for president, left a crowd of potential votes and walked over to me. He asked me about any concerns I had. We discussed a few. Then he asked me to apply for a position on his cabinet if he was elected. Sure enough, he was elected and I became co-director of Students with Disabilities Affairs.

In that capacity, I helped organize activities during disability awareness month (October) and held an appreciation banquet for all the assistants and attendants who help people with disabilities.

The next year, I was recruited by the Disability Coordinator at DSS to be in a student organization for people with disabilities called United Students. It was just getting started back up after a few dormant years. I became the president and served in that capacity for two years. We worked with the Student Association (student government) to host events, including panel discussions, game nights, movie nights, and the events I mentioned earlier.

This is still an unfinished story.