This post is for anyone who saw the Hub presentation yesterday at USD. Others are welcome to read it, too.
Sometimes people are invited to speak to groups not because they are good speakers, but because they do a good job of expressing themselves in writing. Sometimes this works out well; frequently it doesn’t. It is often the case that these skills, writing and speaking, do not come packaged together, and this is also true for people not on the autism spectrum. For someone like me, though, the transition from written to spoken word can be dangerous, a word I use here not in a metaphorical sense, but in the very real sense of creating false impressions which could ultimately cause very real harm to oneself and/or others. Physical harm, irreversible harm.
There are times I almost forget that I can’t always make my mouth say the things I tell it to. There are cues on the slides I use to remind me of what I mean to say next. Nevertheless, these thoughts might fail to assemble themselves unless written out word for word. This is for anyone who attended the talk at USD yesterday, because these things cannot be left out, and this is the way I have to tell you that I know will work.
First, I need to say how very much I appreciate being invited here as a member of Autism Hub, and how much more I appreciate the work being done at USD’s Autism Institute. I have attended a number of mainstream autism conferences; this is the first one I’ve seen truly dedicated to understanding and supporting autistic people and our differences, rather than discussing how to change us. Thank you for that, Dr. Donnellan and Martha Leary, as well as all others involved.
The idea of supporting people rather than trying to force them into those behaviors the majority can more comfortably tolerate, the correctness of this seems so very self-evident, I often forget what a radical concept it is, how much we are sometimes hated for expressing it. This is what I wanted to tell you:
The video by Kev about the history of Autism Hub was well received. So many of us are indebted to the work he did to start this and nurture it into what it is today. What we didn’t talk about is why Kev wasn’t there with us, why he isn’t writing here on the Hub anymore. Kev’s family was threatened by someone with an agenda. His daughter was mocked, funds were falsely solicited in her name, words denouncing Kev were falsely attributed to her.Kev is not the only person who has been attacked for speaking out about the rights of autistic people. Threats have been made against scientists, researchers, bloggers. Yet there are some who accuse us of "attention seeking." Why would threats and intimidation not be worthy of attention? Why would we not seek to show the dangers of being autistic, of speaking out?
I wanted to tell this small piece of Kev’s story as an illustration of why this work matters so much to me. Far more important though, is the story of Katie McCarron. I didn’t put her name on the slides; I was sure there was no way I’d forget to talk about Katie, and I knew exactly where the story fit, but somehow, knowing I had already exceeded my allotted time, I didn’t manage to say it.
Katie was killed by her mother, Karen McCarron on May 13, 2006. She was three years old. Karen McCarron has said that she wanted to "take the autism out" of her daughter, that she wanted a "life without autism." This was several days after the release of the video Autism Everyday, in which Alison Tepper Singer discussed her thoughts of killing her own autistic child. I'm not saying there is a cause and effect relationship; she may or may not have seen the video. I am just saying what happened because some of you, some who may be new to the Hub, haven't heard it before.
McCarron's trial started Monday, the same day as this conference. For more information on the trial, see Autism Vox. Think this is just horrible, but surely an isolated incident? See more reports of violence against autistic people here.
Does the way we talk about people, the words we use, the layers of meaning behind those words influence the treatment of those groups by others? Possibly?
Discuss. If not here, then somewhere. I'm asking you to consider the possiblity that it does.