Friday, September 26, 2008

Who You Are Isn't Good Enough!

We recently got Catherine Maurice's Let Me Hear Your Voice for a conference presentation my mother and I are doing (about the use of war metaphors in autism - something that book has a lot of).
I was shocked, when I read her book, to see:

"I mean only to say that this autism thing was taking over the very essence of who Anne-Marie was. She did not 'have' autism; she was autistic. She was already so alien, so distant. When no light shone in her eyes as she glanced at us, no smile or recognition crossed her face, then no longer could we find a self in her."

The phrase in bold rang in my head, because so many autistic self-advocates say the exact same thing. But it's different.
Many parents 'fighting' autism are pretty clearly using the 'trapped child' metaphor, that something - autism - is imprisoning their child, who is somewhere in there trying to get free. The use of person-first language parallels this. But Catherine Maurice had more of a 'stolen child' metaphor, that her child was being replaced by someone else (although her view of Anne-Marie has elements of both).
What shocked me was that she viewed autism as part of the essence of who her daughter was (at least after her regression) and yet she still wanted to change her - to make her normal. If she really could do that (she had the usual 'magic-like' notion that just forcing a child to do normal things would change their brain into a normal brain) then she would actually be destroying the autistic Anne-Marie, in order to get a completely different (normal) child in exchange. And yet she felt it was for Anne-Marie's benefit!
What she was trying to do is a lot like a parent who aborts their Down Syndrome infant and then gets pregnant again, to 'replace' the DS child. The only way you can view something like that as at all benefitting the DS child is if you consider their live so worthless, so tragic, that nonexistence is prefferable. Leben unwürtiges Lebens*.
Of course, in reality, ABA does not make your child into someone else any more than any other life experience does. It can't make an autistic brain neurotypical, just teach an autistic to act neurotypical.

* A German phrase meaning 'life unworthy of life', used by the Nazis to refer to disabled people.

4 Comments:

Blogger wrongshoes said...

Fantastic idea - why not just make life easier for everyone?

I love that you mention subtitles - I am not deaf but always have the subtitles on when available.

7:15 PM  
Blogger wrongshoes said...

Whoops, my comment above was meant for the next post about "Special Accomodations and Proving Disability."

But I did want to comment on this one also - I see this issue from both sides. I know what it's like to be considered abnormal while considering myself to be just who I am, but I also know what it's like to parent a child who turns your world upside down.

I agree we need a cultural shift that allows people to be accepted for who they are, but I also think we should have compassion for the parents who are living in the world we have today, parenting the best way they know how.

8:05 PM  
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