The post had been up for about three hours when I was doing something in my house and thinking about it, and thinking about the video, when it suddenly struck me: I only mentioned the parents in the video. I didn't mention their son. The boy in that video is 15 years old and has cerebral palsy, he is very much aware that he is the target of bullying, and yet I left him out of the discussion?
I quickly ran to my computer and made the change but then I couldn't stop thinking about it. In a discussion about how the word "retard" is painful, I only mentioned the parents of the disabled boy and not the boy, himself. Surely he feels more pain at being the target of bullying than his parents do, and yet.... I left him out?
That struck me as very profound, that I would do that, and it's very indicative of the theme of the writing that I read from my friends who are autistic, that disabled people are being left out of the discussion about disabled people. How can we talk about the health and well being of disabled people if we're only talking about their parents and not them? I was part of the problem.
It was kind of an epiphany, actually; it was one of those "a-ha" moments that marks the beginning of a change in my perspective that will stick with me. (It's probably pretty obvious to a lot of you, but I guess I needed a bigger learning curve). And so, I wanted to give a shout out to the people who I credit with changing my perspective, my friends Rachel and chavisory. They are autistic self-advocates and are both my facebook friends. I read what they write, on their blogs and in comments on other people's blogs, and I know that they are patient, kind, smart, wonderful women. I know that they discuss the issues without attacking and without judgment, and I know that they will tell me the truth if it's something I need to hear. And I know that they are right. And it is their experiences as autistic people that will help pave the way for my son; I can't do it without them.
I know that as an autism parent it is my responsibility to not just talk about myself in this experience; to exclude my son from the dialogue is to defeat the whole purpose of everything that I'm doing. And I know this because of them; because of my friends.
So, I just wanted to tell them both: Rachel and chavisory, thank you. You have changed me.