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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

Thursday, October 27, 2005

 
Back to my musings about CURES. I suppose I should clarify why it is I have the perspective I do. After working as an art curator, I became a very adept fundraiser, so much so, I was hired to lead various arts festivals and later, became director of corporate development for some health charities here in Toronto. I am the developer and the mind behind one charities' click to give program, which was called "Click for the Cure." Alongside one other major charity, I was the first in Canada to get it online and generate corporate support for it.

So I know the leverage and power of that word from a marketing perspective. In order to have the needs of the charity met, the drive had to be goal driven. Being goal-driven gives a reason to support a cause. If not a cure, then why? Why give? To give for any other reason than a cure seems too evasive and uncertain.

Of course, within autism, I do hold a different perspective. I believe that research has enabled us to understand the complex framework of autism so that we can understand people with autism and offer them a better quality of life through such understanding, and providing better and more appropriate education.

It is not as if I am saying stop the research. I am not daring or confident enough halting hundreds of years of PROGRESS. I do ask questions, though. I believe we are all asking the questions about what progress actually means, at what costs do we achieve it, and, are we really progressing?

Through science, technology, economics, we have nearly deified ourselves. We have come to a point where we believe we can FIX anything. The environment has gone to pot? -- it's okay, we can fix it when we need to. Getting old? -- don't worry, we can extend your age and cover it up with botox. Progress seems to be intrinsically entwined with having control, and with immortality. Remember Gilgamesh? We have become victims of our own hubris. Jane Jacobs states: "History has repeatedly demonstrated that empires seldom seem to retain sufficient cultural self-awareness to prevent them from overreaching and overgrasping. They have neglected to recognize that the true power of a successful culture resides in its example. To take it successfully, a society must be self-aware." (p. 176 Dark Age Ahead). In terms of a cure of autism, which will sometime be on the horizon, I ask that we continue to ask the questions that I mentioned in my previous entry.

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Adam is talking more than ever these days. I've been insisting that he answers questions, I model the answer or I have prompted it -- he had a difficult time understanding what yes meant until I put it over and over into context. Now, he's telling me he's hungry, he answers me when I ask him if he wants something (Yes or No), he calls for me, or Flor, he answers all kinds of questions and he understands receptively. He can print his own letters, and do so many things that he couldn't do a year ago.

As in progress, it is better to measure it in years and months than in days or weeks. It is easier to see the huge and deliberate strides Adam has made within a year.

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