Nobody Teaches You How to Tell People You're Disabled

Telling people that I have muscular dystrophy has been interesting throughout the years. I was in the first grade when I found out about the disease, and I was excited. I finally had an explanation of why I was different from the other kids and spread that information around. However, the kids my age didn’t understand what it was, and I didn’t know how to explain it properly. People lost interest, and I moved on.

I didn’t think of letting people know about it again until I was in the seventh grade. I hated science and hated studying for exams for that subject even more. This resulted in getting D’s and F’s on all my tests. The normal response would have been to study more, but I stupidly thought that was beneath me. I decided to do extra credit instead.

Now, the extra credit took way more time than just studying for the exam, but somehow this logic made sense to me. Instead of studying, I was doing deep dives on whatever we were studying and presenting it in front of the class. Eventually, it got to the point that my science teacher dubbed me the extra credit queen. I wore that title proudly even though I really shouldn’t have. It came to the point that I had run out of things to do for extra credit. I pondered about science topics that I could talk about, and thought, why not just talk about my MD?

It was something I knew a lot about at this point, and I could use personal stories instead of a lot of research. I talked to my teacher about it, and he approved the subject. So, I created a presentation and talked about the disease in relation to me. My teacher asked my classmates if they knew I had a disability. Most of them knew that something was wrong with me, but didn’t have a term for it. I haven’t thought about that day in years until I talked to a former classmate about it. They told me they were glad that I shared something so personal and meaningful in the class. However, I didn’t think of it that way. All I saw was a boost in my grade, not an inspiration for others.

The next time I would tell people about my disability was when I went to Six Flags. My parents were concerned because going through Six Flags required a lot of walking. They had me use a wheelchair and then got a special pass so that I could go to the front of the line on all the rides. I would have to explain that I had a disability on every ride we went to. Normally, I wouldn’t care. However, I became embarrassed when people saw that we were getting special treatment and tried to convince the ride attendants that they were with us. I hated the whole experience so much because I didn’t like being the center of attention. People just saw me as someone they could take advantage of instead of a girl who has issues walking around and just wants to have the chance to participate as everyone else does. Every time I went to Six Flags after that, I would choose just to walk and not cut ahead of the lines. I didn’t want to be used that way ever again.

The next time I would mention my muscular dystrophy again was when I entered the 9th grade. This was the first time I went to a school that had multiple levels. They had an elevator that I could use to go between floors. I also got to leave class early to get to my next class. Since I was leaving class early and using the elevator, it kind of forced me to talk about my disability to everyone to explain why I was getting special privileges.

I found the situation annoying until it came to lunchtime. Lunch at the school was special because they had food vendors. They had Subway, Pizza Hut, and Vienna Hot Dogs. Because I got to leave class early, I always got to the lunch room before the food was all gone. It was the one time when I had any positive association with my disability. It also made answering questions about myself worth it.

The most embarrassing moment of explaining my disability came when I entered the 11th grade. I was in a different high school by that point. The only ones that I really discussed my disability with were my teachers. The reason they knew was in case something happened. I foolishly thought that nothing would happen for them to have that information, but I was sorely mistaken.

One day, while walking to class, I felt my foot slide forward. When that happened, I felt myself fall backwards onto my ass. I was staring up at the ceiling, mortified, while other students were wandering around. I was scared because I didn’t know how to get up.

My Spanish teacher saw that I had fallen. She was elderly and couldn’t pick me up herself. She started screaming in the hallway that I was disabled and needed help getting back up. I wished a hole would swallow me up at that moment. I was so embarrass of the whole thing. However, I felt arms wrapped around me, getting me off the floor.

I had no idea who the people were who helped, but I ultimately appreciated that they did. For the rest of the day, my teachers asked if I was okay. I got a note from the nurse’s office asking if I wanted to call my parents and go home. Then rumors spread from me just falling to being seriously hurt. My youngest sister came during one of my classes to see if I was okay because she was told I had broken my leg. The incident forced me to explain myself to students who asked what happened. It took several days before everyone else moved on to the next big things.

What did I learn from all of these instances? I would tell staff, coworkers, and classmates first before anything happened. It wasn’t because I necessarily wanted to. It was more so that I had control over my narrative with muscular dystrophy. I didn’t want people to make assumptions about what I could or could not do.

I know letting others know about your disability is different for everyone, and a lot of people tend to want to keep their disability private. However, I would like to think of it this way. The people who know about my disability won’t be taken off guard the next time they meet someone else with a disability. Hopefully, letting people know about my disability will make it seem more normal, and that we see people not because of their disability, but what they are despite it.