Tongue Slips and Shoulder Chips

When you are in a wheelchair, it is clear that something is awry. I look different. Some can see past it and treat me like anyone else, but for others, it is a barrier. As a result, I am often met with responses that, while ignorant, are also pretty comical. Even though these comments can be annoying, especially the unoriginal ones like, “You got a license for that?!” I don’t take offense because I recognize that people aren’t trying to be hurtful — they simply don’t know what to say. I will say that the one thing that does slightly irritate me is hearing, “I wish I had one of those!” It’s nice when people can show at least a tad bit of understanding. But hey, it’s not a big deal.

The most common question I receive is, “What happened?” Now, this is a pretty reasonable question. Something obviously happened. However, most people don’t consider the possibility of it happening genetically. Some go on to make assumptions. Someone recently asked if I was in the Army. Like yes, I was perfectly healthy, but the Army turned me into this.

Kids have the funniest reactions. Every kid I’ve ever seen stares at me as if they’ve discovered Bigfoot. They have asked me, “Why is your head broken? Why don’t you know how to walk?” But one time I had one of my football jerseys on, and the neighbor kid asked me if I play football. That was one of the funniest things I’ve ever heard.

I have also encountered some folks who are extremely off the wall. When I was younger, my dad and I would occasionally visit my great-grandfather who lived in a nearby retirement home. One time, I encountered a resident who thought I had stolen one of the facility’s scooters and demanded I put it back where I found it. As a young child who didn’t know how to handle the situation, I zipped back over to my father and told him what happened. He just laughed it off, but the man confronted my dad shortly after. Following an explanation, he reluctantly moved on.

Another time, I was simply making my way down an aisle at Walmart, and a woman lost her mind upon seeing me. And no, I don’t think it was my good looks in this particular case. She squeezed against the wall and yelled, “You’re fine! You’re fine!” implying perhaps that she had moved far enough out of the way so I wouldn’t hit her.

I’ve also had some funny experiences in movie theaters. Just last summer, I was waiting for a friend in the lobby when a couple walked up and handed me their tickets, thinking I was an employee. Another time, I took Ivy, my service dog, to the theater. An employee at the door said they didn’t allow dogs inside. When we explained that Ivy was a service dog, he assumed that I was also blind and came to the brilliant conclusion, “Oh. She’s going to watch the movie for him.” I’ll bet he wondered how I could drive my chair through the crowd while blind without Ivy leading me.

It would be so easy to take offense at many people’s ignorant observations and comments, but I’ve learned that life’s too short to carry the heavy burden of a chip on my shoulder.

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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.