A Question that Surprised Me

Having SMA means that strangers approach me on a regular basis. From the onlooker who’s infatuated with my service dog, to the 10,000th person who sees my wheelchair and asks me if I “have a license for that thing,” I’m quite used to comments from people that range from amusing, interesting, smart, dumb, and ignorant to simply hilarious.

That said, it’s quite refreshing when a 5-year-old asks me a more intelligent question than half the adults I encounter.

I was eating dinner at my favorite burger joint with a friend the other night, and as we were chatting, a young girl came up to me with her parents behind her. This girl couldn’t have been older than 5, and as she looked up at me, I was fully prepared for her to ask me why I was in a wheelchair. It’s not something I mind answering. Children are naturally curious, and I’m happy to educate them about SMA and people with disabilities in general.

Nevertheless, the question she did ask surprised me. With wide-eyed curiosity, she asked, “How does your wheelchair work?”

I found myself quite taken aback for a moment, but in a good way. Even at such a young age, this girl possessed the maturity to understand that I needed a power wheelchair to meet my daily needs. Rather than view my disability as abnormal and wonder why I couldn’t walk, she simply wanted to learn more about the specifics of how I live my life.

Fascinated by her interest in the technical aspects of my chair, I pointed to my joystick and explained to her that it controls most of the chair’s functions. I also showed her some of the other buttons on the control panel and my robotic arm, and tried to articulate myself as best I could. In all honesty, it was such a good question that I wasn’t quite sure how to answer it effectively.

This girl seemed content with my answer though, and I said goodbye to her and her parents as they walked away. I then resumed eating my dinner, but that brief conversation stuck with me.

I used to shy away from any questions related to my disability. Whether it was kids or adults who approached me wanting to learn about SMA or my wheelchair, I kept my responses as brief as possible and found these encounters terribly annoying. I didn’t want to stand out because of my disability, and I didn’t want the first thing out of a stranger’s mouth to be a question about my wheelchair.

As I’ve gotten older, however, I’ve changed my attitude toward strangers who ask me these questions. I welcome those who are curious, especially kids who possess a natural curiosity. This provides me with an opportunity to educate the next generation, and to show them that people with disabilities and in wheelchairs aren’t people to be intimidated by or seen as abnormal. We’re all just people, and some of us just do things differently than others.

I want to thank this girl and her parents for reminding me that curiosity is a wonderful thing. Not every person who comes up to me is there to drop the “don’t run me over!” line, and that alone gives me hope.

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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.