Why Are You in a Wheelchair?
This is the question that every person with SMA will be asked more times than anything else in their life.
Parents who have children with SMA probably hope that one day they and their child will get to stop answering this question. After 25 years, I can tell you with certainty that it will never stop.
Questions about my disability
Like every kid with SMA, I’d tend to shy away when confronted with questions about my disability. Most of them came from my peers who were just curious why I couldn’t climb the monkey bars with them or actively participate in their rock-climbing birthday party.
It’s only now that I realize the questions never came from a malicious place or a way to single me out as being different. Instead, kids are just trying to understand someone they want to be friends with.
My response to others asking about my wheelchair
So, when I was asked, “Why are you in a wheelchair?” or “Why can’t you walk?” I always answered with “I have weak muscles and this is how I get around.”
99.9% of the time that answer would suffice and I would go on to have a fun time on the playground. Of course, this response wasn’t something I thought of myself when I was 4 years old.
Understanding SMA as a child
If you’re an SMA parent, it’s important for your child to understand their disability as soon as possible.
As a kid, I probably didn’t understand the scientific intricacies of how or why. But by being involved in doctor appointments and listening to my parents, I understood that SMA meant I wasn’t as strong as my brother or friends. Because of that, I had to use a wheelchair.
Even with just this little information, it made difficult questions a lot easier to answer because I was confident in who I was and how to answer.
If your child is struggling with answering the wheelchair question, make sure they actually have an answer before making yourself and your child upset that the question was asked.
Answering questions in a positive and informative way
Like I said, unfortunately, these questions will never stop but they will slow down. In the meantime, come up with a game plan on how you and your child want to respond in a positive and informative fashion.
Feel free to steal my line about having weak muscles or add your own spin. Either way, it’s best to keep the response simple and fun.
For example, now as a young adult, I like to have a little fun with how I answer. Sometimes I share a fake anecdote about a freak circus accident that landed me in a wheelchair.
That just breaks the ice which I follow up with a simple version of the truth. Plus, wheelchairs are a great way to get that cute girl or guy at the bar to sit on your lap.
An opportunity to make new friends
But, going back to being a kid, there were obvious times I didn’t want to answer or explain why I’m different. That’s 100% fine but it never stopped me from making a new friend.
One time I was watching my older brother at his little league baseball game. I was probably about 4 years old when a girl around the same age approached and asked, “Are you handicap?” My answer was, “No, my name is Chaz. Do you want to play?”
Is self advocacy a part of your daily life?