Fear and inclusion

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In a world that sometimes seems so heavily dominated by the fear-driven politics of division, I am grateful to live in a country that cites inclusion as a core value (or at least our PM does). And while the idea of neuro-diversity is gaining traction (case in point: at a recent pitch session I attended for local tech investors, "neuro-diversity" was mentioned by three separate, unrelated presenters); it's still far from being a mainstream concern. With much of the world still struggling with the basics - religion, ethnicity, gender, orientation (even in Canada, as much as we like to emphasize diversity, we still don't treat our aboriginal peoples very well); it's hardly a wonder that acceptance of people with neurological conditions is slow to catch on.

So yes, I remember signing my kids up for things like soccer camps or youth groups and being afraid to mention that one of them had "special needs" - because in my opinion he didn't need special treatment, and I was afraid of him being judged, stigmatized, or left behind if I confessed on a form that he had a diagnosis of a "mental disease". Of course in retrospect that sounds ridiculous. Obviously, the people who would be working with my kid just needed a heads up that he might respond in unusual or unexpected ways to situations. And maybe what to do about it.

My error was in wanting my child to be perceived as "normal", rather than accepting and admiring him for who he was. Fear makes us irrational.

What I eventually realized, later than necessary perhaps, was that yes, people will judge you and they will judge your child. Let them. They will judge, possibly even criticize your parenting, and overwhelmingly for the most part, will do their best to help. Because that's what people do. We all try to sneak a curious stare at that guy with a missing eye, or the girl with half an arm. But we will stop to open the door for the wheelchair, so why would we treat people differently if their affliction or uniqueness is mental rather than physical? Mostly we try not to, but part of it is that we just don't know what to do, how to help. I can now often identify an autistic overload freakout moment, but if it's someone else's kid I wouldn't know what to do unless they told me. Most people who haven't experienced this kind of thing would think "what's wrong with that kid?" There aren't always visual cues for autism.

Sometimes though, the community comes together and inclusion wins. A few weeks ago I attended the year-end music concert at our local high school. My on-the-spectrum son graduated from there last year but my not-on-the-spectrum daughter is in Gr.11 and was playing in three different bands (hyper-achiever; she comes by it honestly). One of the choir members is a girl with Down Syndrome. That's a highly visible condition of course, and I've had the opportunity to see this girl perform every year at every school concert since elementary school.

On the surface, it looks like she just doesn't belong in the choir. She doesn't usually sing and when she does it's not on key, in time or even the right words. She struggles with the music. She's always looking around, making occasional outbursts, and on very rare occasions some anxiety takes over and she needs to be helped off the stage. On the surface, you might think she doesn't belong in the choir.

You'd be very wrong to think that. She belongs there because everyone - staff, students, audience - decided she belonged. Year after year, a conscious decision made without any apparent complaint, dissent or hesitation. So she struggles with the technical aspects of the music. Who cares? Nobody. She loves the music and she loves being part of this group, year after year. She's not afraid to stand up on stage, and she's not embarrassed to show everyone how the music moves her. Nor should she be. She's part of the choir - she belongs - and that makes her more important than the performance. But her being there doesn't in any way ruin the performance - by bringing out the best in everyone else, it elevates it into something beyond the music itself.

Sometimes I wonder if conditions like autism, Asperger's, Down Syndrome etc afflict our children in order to teach us some important wisdom. It's not always easy but the most important lessons are often the hardest.

What are we afraid of?

2 thoughts on “Fear and inclusion

  1. Tammy Enesco

    Wow. All I can say is Wow. This was a powerful post and one I will remember and share. Compared to so many other countries(well most, actually) your country’s leader is perceived as the most open minded, down to each and involved leader we have ever seen. He joins pride parades and youth/woman’s marched without an armed escort. He speaks out about the need to protect our planet and our planets biggest gift, our children. Having a leader like that bodes well for your people, your country and all of our futures. Our Neuro Divergent children are in better hands than ever before. With that being said I have looked over your Website and have signed in for a Demo!! Amazing blog. Keep it up!!

    1. Joephafine Hunt

      I completely agree about your leader. He is someone who could help turn the world around. Your blog is pretty amazing I must say. Your web site leaves a bit to be desired. Hopefully your product is better than your site setup.


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