Please Don’t Stop The Music

Filed Under (Acceptance) by Estee on 02-04-2012

It’s “Autism Awareness Day.” I’m not sure I like all the “awareness” events that still grieve the autistic person, “locked inside” a body. Every day is an autism awareness event in our lives, and it can be rather tiring. It seems to take a huge percentage of our time justifying our right to be in school, regarded as intelligent, included in programs, or to be viewed just as any other person would want to be regarded and treated. It’s difficult to be included and accommodated without people wanting Adam to become more “normal.” It’s hard to find a seat at the table.

When I stood with my favorite autism moms at Adam’s school the other day, their children still toddlers, I witnessed, how dreary language and media representation effects our view of ourselves as well as our children. I’ve always felt that the way people make us feel for being different (aka “abnormal” and in need of fixing) makes life harder, not easier. It amazes me how parents lose faith so early on in the autism journey, and while it can be tiring with those sleepless nights, we have to learn that we are “normal” or “quirky” in our own right. This should be a day of celebration and acceptance. I find laughing at our autistic quirks in this house, with respect, helps us live more happily. Laughter enables us to accept ourselves.

At Adam’s school, they play musical chairs. You know how musical chairs goes — the music goes on, then it stops suddenly so the kids have to sit in the available chairs as quickly as possible. There is always one less chair than there is a child…go figure. Whomever doesn’t get a chair, loses. I’ll bet this game in particular is difficult for autistic kids who can’t catch the rhythm of social interaction and games like this one. Temple Grandin describes a scene like this when she’s watching a circle of people talking. She’s trying to participate but she describes it like trying to jump in on a game of Double Dutch (skipping for those who don’t know it). She just can’t get in.

For Adam, we’re still in the turn-taking and sequencing phases, and he’s learning to be patient while waiting for a turn. Yet he loves to dance with people! The music plays, he probably starts to dance or follows everyone in the circle, then probably doesn’t understand why he doesn’t get a chair. I’m not there, you see. But I can just imagine.

Adam gets upset when they turn off the music. I can picture him dancing and jumping with that ecstatic smile on his face. He’s probably thinking “What the ____? Put that music back on!”

Some days it’s hard to be an autism blogger or purporting a belief in autistic people, more than it is just to live in the moment and dance with Adam. He wants to dance with us. Please don’t pull away his chair at the table. He deserves a place there. Please don’t stop the music.

For viewing:

Here’s a video choice from John Michael Carly of GRASP who spoke at the Colombia University Centre for Bioethics last year.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.