Almost every major media outlet in Canada seems to have reported the story of little Miles, a boy in New Westminister, BC who has spinal muscular atrophy and uses a wheelchair. In the young student’s class picture you can see that he is sitting off to the side in his wheelchair, a few feet away from the rest of his classmates — leaning as far over as he possibly can in order to get close to his classmates — with the sweetest, biggest grin on his face.
When I first saw the photo I cried. I’ve written before about how we pulled Syona out of her school because it just wasn’t as inclusive an environment as we wanted. I’ve also shared my thoughts on how frustrating it is when people don’t include disabilities when they discuss issues of diversity. But what it really boils down to is that inclusivity needs to exist on every level. (On that note, please keep in mind that this post is about our personal experience so I talk mostly about Syona and our experiences with her physical disability. Many other special needs are different in nature and often invisible, but I believe the concept of inclusivity applies to all.)
The mom of this boy is heartbroken, and I completely understand why. Any parent or any person who cares about any child — special-needs or not — will understand why.
If you don’t get it, ask yourself: How would you feel if you lived in your own world but were always left three to four feet away from anyone around you? Or if the world thought of you as an afterthought?
When you are living with a disability — in our case it is my daughter’s disability — you see the gaps everywhere: the lack of accessible parks, swings, too-small doorways that won’t fit her wheelchair, impossibly placed door openers, etc. I know this list will continue to grow as she gets older and we go farther down the road that is part of our journey.
People often think of inclusivity as a concept that ensures people with special needs get to take part in what happens around them. But I think it is about so much more than that.
To me, true inclusivity is when my daughter has the choice to participate in an activity in a way that she is able. Yes, the activity will be altered but that is OK. But this way she is not an afterthought. Wouldn’t Miles’s class picture have been way cuter and more inclusive had they placed him in the centre of the photo and had kids sitting on benches on either side of him or standing around him? Would it really have been that hard? I don’t think so.
I read through a lot of the comments on the story — most were supportive and encouraging. But there were an alarming number of comments that were so ignorant, rude, dismissive and downright nasty. A lot of them commented on how parents of children with special needs were sensitive. The truth is that we are sensitive — in the same ways as any other parent — but we just have a lot more on our plates. Some of the comments implied that we should sit idly and be content that the child was even in the picture.
Really? The concept of creating an inclusive society is that offensive? It takes something away from your existence? I choose to believe that these people are not the majority. However, there are a lot of people that just don’t think about it — probably like the teacher, or the photographer or perhaps even the school board (who could easily put policies, procedures and processes in place that help create truly inclusive situations). Most aren’t out to be malicious, they just aren’t aware.
And that’s why stories like this are important. This post is my way of saying thanks to Miles’s mom, Anne Belanger. She was brave and honest and found a way to share their story. And because of her willingness to speak out so many people are now better informed.
Stories like this are sad, yes, but they can help create a more inclusive environment, which I believe can lead to a more inclusive society overall… and wouldn’t that make our world just a little bit better?
How do you encourage inclusivity? What do you think of this story? Tweet me at @AnchelK.
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