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When My Son Used a Wheelchair at School for the First Time

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That day.

That day that has been in the back of my mind ever since my boys were diagnosed with muscular dystrophy is here. This morning, my son took his wheelchair to school for the first time, as walking the long corridors in school is getting too hard for him and draining his energy.

Ever since their diagnoses, even from that very first day, for some reason the “he will have to use a wheelchair full time” sentence has always been portrayed as some sort of defining point in this process and progress of his disease. Usually, it’s a topic that is very lightly talked around in conversations, and always viewed from every point of view as a negative.

Why is that? Him getting to conserve his energy, lessen the risk of falling, making him more independent in getting to and from the places he wants to go to. It is actually quite sad that from the day a parent is told of such a diagnosis, nothing is ever viewed in a positive light. Yes, he will need to use a wheelchair, but you know what, nowadays there are very good wheelchairs, and they even look cool. It will make him more independent, help him navigate society and be his own person. There is lots of other equipment that he might get to help him do the things that are hard, so yes, it will be a little hassle to figure everything out, but it should be fine.

Not one professional has ever talked to us about the future in a positive light. Not a single one. Ever. And that is a problem in and of itself. We must stop viewing wheelchairs and being in one as a negative thing. It is not. Yes, it is different than what most people use to get around. But it is not worse.

I want to quote a great article I read once, A Primer Against Ableism for the Duchenne Parent Community:

“Walking is not better than rolling!”

Getty image by baranozdemir.

Originally published: May 13, 2021
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