December 5, 2012
Because I remember
Two major considerations of autism and the place of autistic people in society sort of collided in the news media this past week. First, the New York Times’ Sunday Magazine ran a long piece, “The Autism Advantage,” on a European company, Specialisterne, whose mission is to find supportive employment opportunities for people with Asperger’s Syndrome in the tech world. And second, the House of Representatives held the first hearings in a decade on rising diagnostic rates of autism spectrum disorders.
In both forums, it quickly became apparent, as it often does, that by having any ability to take an active role in our own lives or discussions about us, our right to do so is discounted by many. The comments section of the Times article quickly exploded with criticism that because some autistic people are too severely affected to ever hold jobs, the article was irresponsible or trivializing, that the employment concerns of the so-called “high-functioning” had no place in discussions about real autism.
And the originally slated panel of witnesses to Congress included zero autistic people of any stripe. When Michael John Carley and Ari Ne’eman were added in response to pleas from the advocacy community, complaints resulted that two such “high-functioning” men couldn’t truly represent autistic people, or did so inadequately because their testimony didn’t focus on the need for a cure for “lower-functioning” people.
Effectively, that because some autistic people have severely compromised communication abilities, we should not have been represented, in a Congressional hearing about the federal response to our existence, at all.
And I’ve lost count of the number of times in online discussions when I’ve been told that I’m nothing like someone else’s child, couldn’t possibly understand what their child goes through or have any idea what it’s like to be their child…before they list off a litany of experiences that sound a whole lot like my own childhood.
(Or sometimes not. Sometimes someone else’s experience with the autism spectrum is actually radically different from mine. It’s called a spectrum condition for a reason, and we know this, better than anyone.)
I may never be able to convince these people that my experience has anything in common with their children’s. I know that no single human being can ever truly know the experience of being another, but I also can’t convince myself that I have no place standing up for those kids.
Because I remember getting the message so often, in so many ways, that there was no place for me in the world as I was, that I was never going to make it in “the real world.” That I wasn’t going to be allowed to make it if I wasn’t going to do a better job of pleasing others.
I remember not being able to look the way I was supposed to, talk the way I was supposed to, dress the way I was supposed to. I remember not being what anyone wanted.
Because my heart broke for your kids when Michael John Carley asked the nation to remember, when we talk about the autistic, that the vast majority of us can hear and understand what you say about us—and a gallery full of people behind him angrily shook your heads “no.” Because I remember being told again and again that I could not be perceiving what I was perceiving, and being told that I couldn’t or shouldn’t be able to do what I knew I could.
Because I remember having no one who spoke or understood my language, and losing hope that I ever would. I remember having no one who thought that the world as I experienced it was worth respecting or understanding remotely enough to be any help to me.
Because I remember the constant implication that the ways I was being treated were acceptable because the way I am was not acceptable.
These things wear you down, day after day. The memory of it all wears on me still. I want better than that for your kids. I think we can all do better than that for your kids. I’ve cited before, and probably will again, the quote from Adrienne Rich:
When someone with the authority of a teacher, say, describes the world and you are not in it, there is a moment of psychic disequilibrium, as if you looked into a mirror and saw nothing.
I think that all of your children deserve to see a world with them in it, and belonging in it.
And far from our abilities disqualifying us from that role, I believe that our communication abilities and everything that we’ve done and learned for ourselves are all the more reason why we have a responsibility to stand up for kids like yours. If I were to decide that because of the gap in our apparent abilities, that they and I have nothing whatsoever to do with each other….If I said “You’re right; because I can speak and write and have a job, and your child might not ever, then his rights, dignity, and well-being have nothing to do with me,” then I really would be guilty of the accusation leveled against activists so often–that we care nothing about the well-being of the more severely disabled.
But I don’t think that’s true.