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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Wednesday, February 28, 2007


We Learn to Include By Including

This rendition of "Not a Puzzle," from our autistic board member of The Autism Acceptance Project, Brian Henson. It comes on the heals of many other renditions of autistics not viewing themselves as a "puzzle," as represented in so many charitable campaigns today.

Last night, Adam didn't sleep until 5 a.m. Once in a while we have the episodes. They seem to coincide with too much stimulation in the evenings, or if we forget and let him run and jump around. He sure is a happy little guy, so it wasn't a distressing evening. He simply didn't want to go to sleep. Believe me, we've had many of those nights in the past. About three years solid from the time he was born. I have to admit, I got to a point where I was so sleep deprived, I was in tears some days. Luckily, we moved beyond it and sleep soundly most nights, so this is now an exception.

While I was awake, I was thinking about Brian,Martine and Michael, our autistic board members (and we want to expand our autistic membership), and other members of the TAAProject advisory. Recently, we had a visioning meeting. It was wonderfully stimulating, as we discussed all the issues about autism these days. We have a forum where we can do that at TAAProject with the one goal to keep it positive and guided by our autistic members. Us "non autistics" have a lot of opinions about autism. Our board has clinicians on it, a lawyer who for us, represents "public perception" about autism, some parents and of course, autistic people. What I notice is that the autistic members are quiet. They let us non autistic people go on and they don't aggressively edge into the conversation -- largely because they can't and often because they won't. I often had to stop the conversation in order that they could "have the floor." Afterall, this is who we are doing it for, so we put the weight of our decisions there. It made me think how safe environments for autistic individuals to participate is steamrolled over by most of us. It made me consider when I began moderating comments on this blog when an autistic person from the US called us at TAAProject and said "thank you, I didn't feel safe to comment before."

Michael, Brian and Martine can come to meetings. Some autistic people cannot. Last year, when I considered putting on a panel discussion to debate the ethical issues with Wendy Roberts (a genetics researcher), heads of charities here in Canada, and other autistic people, the overwhelming consensus was that it would be difficult to process in that type of setting for the autistic members of the panel.

All of this has made me consider what it is we have to do at TAAProject to make it work so that autistic people CAN participate -- how do we provide access? How do we enable "panel discussions" to work be it through live feed, be it providing questions and have people write answers in advance of presentations? Afterall, Dr. Roberts and the like get the floor often enough, and autistic people do not. How do we make autistic people who currently feel unsafe, safe to discuss the important issues that face them every day? How do we honour certain sensitivities for individuals who want to participate, with light, noise and unrelenting stares? How do we use technology and forums to further allow autisitcs to particiapte world wide?

These are the considerations that will hopefully turn to action on our part. Asking autistic people what they need and observing how one can sucessfully accomodate, is the first step to inclusion.

"You learn to read by reading.
You learn to write by writing.
You learn to include by including" -- Paula Kluth


Blogger Peggy Lou Morgan said...

I so know about the sleep deprivation. We go through long periods of that. In the beginning I didn't want to medicate. Eventually we tried some things but Billy Ray builds up tolerance to medication very quickly so nothing really works for long. Fortunately it is cyclic. We will fight it for a while then catch up on sleep for a while.

I totally agree about including. If we can adadpt to what an individual needs to be successfully included that "including" brings true joy both for the individual and the community as well.

Awareness is achieved by including someone so he or she becomes a known person. With that knowing acceptance and tolerance for differences improve.

9:19 AM  

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