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4:08pm January 3, 2012

allies-person:

It is disappointing that so many “parent advocates” know so little about the disability rights movement writ large.

I feel like I want to institute a pop quiz. Who is Ed Roberts? What is ADAPT? True or false: the disability rights movement started out only for people with physical disabilities?

Hint: that last one is absolutely FALSE, despite what some ignorant people would have you believe.

One time I was at a conference. The focus was ending DD institutions in all forms, even the more stealthy varieties. And this father started going on at great length about what parents and professionals could do.

I asked “What about us?”

Mind you – I think I asked it ten times before he even noticed my presence, and then only because another parent pointed me out to him.

His response was essentially: “Parents are the heart of this movement. Self-advocates only have a voice because Gunnar Dybwad gave you one. Be patient and wait until parents may figure out something for you to do.”

I was flabbergasted. Meanwhile all the parents in my immediate vicinity were reacting to me as if a potted plant had just decided to talk to them. They were whispering things to each other about how amazing it was that I could type. (This was the event that finally got it through my skull that lots of people see my appearance as that of a “low functioning” person. People had been telling me for years but I didn’t believe them until then.)

As far as I’m concerned, self-advocacy happens wherever disabled people resist oppression. Whether it’s fighting back in institutions, running off and surviving after people tried to kill you as a changeling, making a place for yourself in a world that (socially) has no place for you in it. My great-aunt had to fight, at the height of the eugenics movement, to be allowed to marry another man with a developmental disability and as far as I’m concerned she was a self-advocate before the word was even invented. We’ve been doing this since long before parents got organized. Certainly ages before Gunnar Dybwad even existed.

But some people just Don’t Get It.