Is That Paint or Legos?

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.

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