Spinal muscular atrophy student

Angie L.

Student

Introducing myself and my disability

First impressions are crucial for everyone in that they can determine how someone views you for a lasting time. Unfortunately, first impressions often involve an individual’s appearance, and for those with SMA, our differences are all the more apparent. After living 18 years with SMA, I have learned that it is better to address my disease right off the bat when meeting someone new.

03/2018

Though you may think the conversation may be awkward at first, I have noticed that people become a lot more comfortable after I explain my situation to them. As my English teacher would say, it is important to remember your audience when deciding the best way to introduce yourself and your disability.

When I was in elementary school, my biggest audience was my homeroom class—the group of about 25 kids I would spend nearly six hours with every single day. During the first week of school, my parents would help me write a letter to my classmates, introducing myself, my likes and dislikes, and my disability. I wrote it in a fun tone, exclaiming that my wheelchair was named “Reddy” because it was red and always ready, and explaining that SMA simply meant I was born with weak muscles and that, no, it isn’t contagious. This is still how I explain SMA to little kids today. I also made sure it was clear in the letter that SMA does not affect my brain—other than the fact that I was in “Reddy” and might need some help with things, I enjoyed many of the same things as my peers. I printed out enough copies of this letter for everyone, and my parents asked my homeroom teacher to send it home with each student. That way, my peers’ families would also be aware of my situation, and the kids could discuss and ask their parents any questions, which my parents and I were more than happy to answer. One time, a girl in my class wrote a letter back thanking me for explaining my situation and introducing herself, too!

As I grew older, I became mature enough to speak about my disability in person, and my peers became mature enough to process the information on their own without having to discuss it with their parents. Usually the first day of middle and high school consists of a bunch of cheesy icebreaker activities. I took these opportunities to incorporate some variation of my usual spiel: “Hi, I’m Angie. I love singing, writing, and hanging out with my friends. If you’re wondering why I am in this wheelchair, I was born with a disease called SMA. It’s genetic and basically weakens all of my muscles, but other than that, I’m just living my life like the rest of you!” I make a point to start off introducing my personality and interests first before ending with my disability, because I do not want to be first defined by my disability. Communicating with my teachers at the beginning of the year has also been beneficial for me. I usually email them saying all the same things that I tell my classmates, but I also include that my immune system is weak, so I’m extra cautious about catching any simple illness and tend to stay home from class, even if I’m just a little under the weather.

Ultimately yes, it is a bit of a hassle to worry about introducing my disability on top of the general stress that everyone feels when meeting new people. Although SMA does not define me, it is a part of me and that’s something I can embrace. Helping other people embrace that same truth as soon as they meet me creates a level of comfort and understanding for everyone.

Other posts by Angie

Getting involved in high school

The night before my first day of high school, I laid in bed wide awake, the butterflies in my stomach fluttering as I pondered what my life for the next four years would be like. Would my classes be hard? Would I get lost? Would I make friends easily? However, I had a big question lingering on top of all these: How would being in a wheelchair and having SMA affect all this?

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