Think Before You Stare

There’s a paperweight that sits on my desk that reads, “People are going to stare. Make it worth their while.”

Apparently, a man named Harry Winston stated this. I did a quick internet search of the fella, and it appears he was a well-known American jeweler in the 1900s. I’d imagine Winston was quoted for this when he was discussing his jewelry line. He’d talk about the ways in which jewelry made a statement and how we could all adorn ourselves in silver and gold to attract the attention of others. Although I didn’t know this man personally, I’m going to guess this is a fair assumption on my part. However, the reason this paperweight is placed front and center on my desk isn’t because of fine jewelry or the man who said it. It’s because people stare, a lot, at the girl in the wheelchair.

In all my 27 years of living, I don’t remember a time when people didn’t stare at me. And, I’m not just referencing children here. I’m talking all ages, including full-grown adults who are more than aware that gawking at a stranger isn’t polite.

Recently, I found this to be especially the case when my family traveled to Disney World. Wherever we went, people stared and, at times, the situation became stressful. People would actually stop dead in their tracks to get a good look as if they have never seen someone in a wheelchair before. But not only did they stop dead in their tracks, they would stop dead in mine.

In Disney, I was dodging people left and right because, apparently, getting a good look at me was worth the risk of getting run over. Navigating through the parks was essentially a level in “Mario Kart,” and the park-goers were nothing more than banana peels I successfully, albeit barely, avoided. My mother made a joke that I should get a job at Disney because people stared more at me than at Cinderella. I think she was on to something.

All jokes aside, there’s still a question that remains to this day, one that may be left forever unanswered. Why do people stare and believe it to be acceptable? I get it. I’m an abnormally small 20-something that sits on a giant chunk of metal and arguably wears the prettiest sundresses in the summer. Only one of these things should give you a reason to stare, and I’ll give you a hint. It isn’t the abnormally small or giant chunk of metal part.

For years, I let this feeling of being stared at fester, for it made me uncomfortable and self-conscious. Why were they looking at me? What kind of judgments were they making? Most importantly, and something that I believe to be the root cause of this kind of behavior, what questions were they thinking?

People are curious beings. And although I don’t condone staring at a person, I now understand their curiosity. I now approach them with empathy. If a person stares, I smile back. If I’m not in a rush, I say hello. The simplest gesture could strike up a conversation and help break the stigma that exists for people with disabilities. It could even be the beginning of a friendship.

My mother bought me that paperweight many years ago to remind me to focus on unconditional acceptance. To understand when I’ve been misunderstood.

And, to always make their stares worth their while.

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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.