Why I Welcome Children’s Curiosity About My Disability

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by Alyssa Silva |

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A few years ago, I wrote about the need for more understanding and awareness about disability. No matter how many years have passed or how much has changed, I’ve always felt strongly that this topic should be included in everyday conversations about disability.

In that column, I shared my experience with a little girl whose reaction to my disability was hurtful, and how her parents responded by leaving the scene. They should have handled things differently, but I can’t speak for that family or say I understand why they acted the way they did. However, what I do know is that the situation could have been a great learning opportunity for the little girl to better understand disability.

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I don’t know much about children, to be totally transparent here. But I do know that they are curious beings. They absorb everything around them and learn to process the world. As I’m sure many can attest, they are guaranteed to share their unfiltered opinions and tell it exactly how it is. (Kids say the darndest things, am I right?)

With this in mind, I have always encouraged kids to ask questions or engage in a conversation with me if the situation allows. Usually, a child will simply stare as they pass by, but every once in a while, I can say hello and gently break down the barrier that may exist when a child sees someone with a disability — or, in their eyes, someone who looks different from what they’re accustomed to.

Recently, I attended a training camp practice by the New England Patriots. These take place on a large, open football field next to the stadium, and guests can sit in the bleachers or on the grass along the sidelines. Tucked away in a corner, I had a perfect view of my beloved team. About 50 feet away, a little girl had a perfect view of me.

I had been a bit oblivious to the little girl watching me. After all, I was watching football right before my eyes for the first time in two years. Happy was an understatement. But after about half an hour, the girl’s mom approached me, asking if her daughter could say hi. Immediately, the girl felt shy. So, I asked her a simple question: “My name is Alyssa. What’s your name?”

Hesitantly, she answered. But the more questions I asked — her age, favorite player, etc. — the more she warmed up to me. Our conversation was short, but it was productive nonetheless.

Her mother thanked me for taking the time to chat with her. She explained that she noticed her daughter had been staring at me and wanted to encourage and entertain her curiosity in a positive manner. But it was actually me who was thankful for the experience. So, I extended my gratitude in return.

What I love most about this story is that I didn’t necessarily have to talk about my disability in order to cultivate more acceptance in this child. We talked about football, how old we are, and what types of exciting activities she did this summer. In doing so, she learned that I’m a human, too.

I’m sure the fact that I’m visibly disabled can be a lot for a child to process when they haven’t seen anyone like me before. I think each of us has some amount of curiosity toward people and things we have never experienced, no matter our age. Some just know how to handle it better than others.

With children, though, I have found that asking encouraging questions and striking up an everyday conversation can be both helpful and productive. The girl at training camp was one of many positive encounters I’ve had when applying these concepts. These small gestures can greatly impact a child’s perceptions of disability. They can move past judgment and learn that disability doesn’t dehumanize someone. Ultimately, this fosters more acceptance in the world.

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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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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