Shh...Mum is Thinking

Sunday, July 16, 2006

Don't Tell Me What I Want, What I Really, Really Want

Is it now necessary for me to say I’ve never, not for one second, either idly or in frustration, wanted to kill my child?

I never thought I’d have to make a statement like that, but just to inform those who listen to Autism Speaks, just in case they’re come away with the impression that parent of autistic child= longing to murder that child, I guess I’d better step right up and set the record straight.

Just in case.

I read this recent article http://www.alternet.org/wiretap/38631/ and the comments by “Autism Everyday” video producer Lauren Thierry with such a feeling of disgust and anger I actually felt nauseated. I was going to write to have my say about the ‘autism parent’/’dreaming of murder thing’, and the gall of this organisation that--on the one hand claims to speak for all of us, parents and autistics alike--and all the while drags us through the mud to further their own agenda. But I’m just sick of it, and there is no way I can say these things better (or more rationally) than those who have said them before me. Please read:

http://momnos.blogspot.com/2006/07/alternate-view-of-autism-every-day.html
http://www.kevinleitch.co.uk/wp/index.php?p=396
http://www.autismvox.com/karen-mccarron-alison-tepper-singer-and-misplaced-compassion/
http://ballastexistenz.autistics.org/?p=159
http://autisticbfh.blogspot.com/2006/07/sick-sick-sick-sick.html

But I have to say, concerning this statement in the article:

“The majority of the harsh criticism surrounding the film is directed at Alison Tepper Singer, a mom featured in the film and a staff member of Autism Speaks. About midway through the film, Singer discusses her reaction to inadequate classrooms. "I remember that was a scary moment for me when I realized I had sat in the car for about 15 minutes and actually contemplated putting Jody in the car and driving off the George Washington Bridge. That would be preferable to having to put her in one of these schools." It was only because of her other child, she said, that she didn't do it.

Both autistic and typical families have reacted with outrage and disgust to Singer's statement -- calling for her children to be removed from her custody and even drawing a connection between her and Karen McCarron.”

The point I want to make is this: yes, that statement made in the video was despicable. But I think that claiming that was the worst thing about the video is not at all correct. Bad enough that Tepper-Singer made that statement, but SO MUCH WORSE to repeatedly imply or even say outright it stands for us ALL. It is the overall disservice that video and Autism Speaks in general have done our community and the individuals in it that is MOST wrong, not simply that one statement.

Autism Speaks claims to speak for us ALL, and yet they consistently sell us short and imply we are less than we really are. Why? To illicit pity from sponsors, to galvanize support for their organisation and ultimately to add money to their coffers funding research that suits their own agenda.

They claim they know what we want.

Well, I think I know what THEY want.

And I think it’s time they stop selling us all short to get it.



3 Comments:

At 10:32 AM, July 16, 2006, Blogger Sharon said...

It's a disgusting assertion and a dishonourable way to make themselves some money. I resent that they claim to speak for all of us. In reality, we are all sold-out for their pity-money.

 
At 5:00 PM, July 16, 2006, Blogger mumkeepingsane said...

Hi there. I am neither seasoned nor eloquent but I blogged about this recently as well and it is a hot topic for me. I've been reading your blog and wanted to say hi.

 
At 10:01 PM, July 16, 2006, Blogger Mum is Thinking said...

True, Sharon. I hope if we call them out on it often enough they'll change, but worry they'll just become more PR about it. At the moment, they're their own WORST PR, aren't they?

Hi mumkeepingsane, I'm enjoying your blog now, too :-) Welcome to the blogosphere...who says you're not eloquent? I think you are.

 

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