Engaging in normal conversations is difficult while in a wheelchair. If people stop staring long enough to say anything at all, it likely will be related to my disability. My appearance evokes a variety of questions ranging from ignorant and annoying to genuine and understandable. While I can’t fault anyone for asking questions of the latter form, answering them does get old.
I am passionate about raising awareness about SMA, but sometimes I just want to have a normal discussion that doesn’t somehow focus on my disability. I won’t go into great detail here, because in one of my previous columns, “Tongue Slips and Shoulder Chips,” I talked about several examples of funny encounters I’ve had. But I will share a couple new stories to illustrate my point.
Not too long ago, I ran into a man (not literally) I hadn’t seen in a while who remarked, “Still rolling around, huh?” I thought, “Yes, sir, just like you will still be walking around until I run into you (literally).” Another person asked my mom, “How does he communicate?” I wish Mom would have replied, “Well, he’s making progress, but right now we’re just happy if he smiles and nods his head.” Then I could have said, “Hi,” indicating that my mom should jump back in mock surprise and exclaim, “He speaks! It’s a miracle!” Those were two of the more outlandish comments I’ve received, but they amused me more than anything else.
“What happened?” is the question I receive the most. Again, it’s a reasonable question, and I have no issues explaining my situation. But because of my desire for normal conversation, I am experimenting with ways of diverting attention away from the abnormalities and toward other things. I dislike attention in general, but I would much rather attract attention for typical reasons. I have, fortunately, discovered some surprising solutions.
In March, I got some Kyrie “March Madness” shoes that are quite flashy. Shockingly, I get compliments on them probably 90 percent of the places I go. At this point, I’m actually surprised if I go somewhere without them drawing attention. It’s great, because instead of having to tell my I-was-born-with-a-disease story, I debate people about whether the bottom of my shoes looks like paint or Legos. Or, what color the Nike Swoosh is. (It appears to be a different color depending on the lighting.) I often explain that they are Kyrie Irving shoes and that he is my favorite basketball player. This can even lead to a sports debate, which is one of my favorite hobbies.
While no other item has received nearly as many comments as the shoes, a few others have helped as well. I wear a lot of team jerseys and hats that stand out. I even have a pair of op art shorts that people jokingly say makes them dizzy.
Anything that can distract attention away from my unusualness is welcomed. It helps me feel more like a member of society.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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