Friday, March 31, 2017

AAPAPE Day

I remember, years ago, when I was called to be on a panel discussing Special Olympics. It was to be a sports panel and the question being debated boiled down to: "Special Olympics, it's cute but is it sport?" This was to be on the CBC on an early Sunday morning. I agreed to be on the panel only if they also invited a Special Olympian. At first they said 'no' and therefore I said 'no' and I thought that was that. But they thought about it and called me back, they had invited a Special Olympics Gold Medallist to appear on the show. He and I sat on one side, the sports broadcasters on the other side and, well in all modesty, we obliterated their arguments.

Why did I insist on a Special Olympian to be on the show with me? Was it to amplify the voice of people with disabilities? Was it to ensure that those who participate were those that spoke? Yeah, yeah, it was all those things but, primarily, I knew that we'd win. Who can look in the face of a gold medallist and say that their accomplishment, and years of training, were meaningless? Who can listen to a sportsperson speak passionately about their love of sport and then say, "Sorry, we don't consider you a real athlete." Speaking truth to power" is only possible if the truth teller has an authentic voice - anything else is "Speaking opinion to power."

April 2nd is World Autism Awareness Day and this morning on television, as I was answering emails, I heard that there would be a discussion on the local news about the day and about Autism. After the commercial the host introduced some doctor from some hospital that specializes in serving people with autism and then a parent of a person with autism. And that, dear readers, was it. Lots of room on the couch but not an Autistic person to be found.

The doctor talked about research and the importance of research. The mom talked through the 'devastation of diagnosis' to the ultimate joy in parenting her child. The host, in the most patronizing voice ever, pronounced autistic people to be human. Well, thank heavens for that. But as always the tone was about his granting humanity rather than humanity being an automatic part of what it is to be autistic.

The host is the host and the host does what hosts do. But I am disturbed than neither the parent or the professional thought to insist that someone with autism be there to speak their truth from their point of view, it's much different to be devastated by a child's diagnosis than to experience your parent's devastation at your diagnosis.

And, yes, of course, I'll be contacting the station and protesting their coverage what turned out to be Autism As Professionals and Parents Experience It Day.

4 comments:

Unknown said...

Sheesh....we humas collectively are really dumb - deluded - disappointing.
And rather frightening in how easily we 'disappear' and 'discredit' these who are different than we are even as we proclaim that we are 'helping' and 'advocating'!!
you could say i am disgusted!
clairesmum

Elliefint said...

This is part of why a lot of the autistic community (myself included) celebrates it as Autism Acceptance Day/Month. "Autism Awareness" doesn't mean anything to me, it barely has anything to do with me.

Rachel S said...

And it's always parents of children or adolescents. What about the parents of grown autistic people? And those of children with other disabilities? It's not like their parents cease being their parents when they have an adult who may need more assistance/advocacy/etc than most people. What about their experiences, and those of their adult offspring?

Oh, yeah, I forgot - they're not cute kids anymore, who you can look at and say, "Awwww," in a patronizing way and get away with it, and tell their parents how wonderfully totally awesome they are for parenting their children.

autistic-on-wheels said...

So absolutely typical. Good on you for insisting on them having a Special Olympian and sticking to your principles! That's how it should be (although hopefully in future we won't have to insist on it because it'll be done automatically. It's constantly done about us without us and that is NOT ACCEPTABLE.

Autism Bewareness Day (as a lot of us autistics refer to it) is definitely about the parents, etc. Actually-autistic people don't come into it. AAD is all about creating fear of autism, holding up the martyr parents and congratulating them because we're SUCH HARD WORK and aren't the parents brave and wonderful and so on. Oh, and promoting Autism $peaks (they chose blue, that's why the official colour is blue, because most of those diagnosed are male - thus completely invalidating and obliterating female autistics from the narrative), which as far as most autistics are concerned is an anti-autistic hate group.

As Elliefint says, it's all about Autism ACCEPTANCE Day/Month. That's where you'll find the autistics. "Awareness" dehumanises us; "acceptance" includes us. Come and join us in changing it to Autism ACCEPTANCE Day/Month! Look up the #30DaysofAutismAcceptance theme, too.

#nothingaboutuswithoutus