This is my post for Blogging Against Disablism Day. I hope to have more, but I’m exhausted from sitting up all the time (which seems to be the only way to keep out of the emergency room, but is hell on non-lung parts of my body), and although I have three or four topics I want to talk about, I don’t know if I’ll finish them all today.
When I was in grade school, there was a girl my age who talked in a loud, nasal voice with highly unusual intonation. She chewed on things that were definitely not food. She could get so absorbed in a book that the only way to get her attention was to move the book or put things on top of it. She did not get along with much of anyone socially. She had loud meltdowns and cried a lot when things went wrong, but she wasn’t spoiled or anything, she was clearly overloaded. Her name and mine were often said together by the other children (along with maybe two other names) as if we had something in common.
I don’t know if she was autistic or not, although it’s certainly my first thought. She definitely wasn’t a typical kid of our age. I vaguely remember her mother having told my mother something about “Jessica’s problems” and her theories about why they existed. (Her name wasn’t really Jessica, Jessica is just a common name for my generation and culture.)
You would think, given all that Jessica and I had in common, we would have liked each other. In reality, she might have liked me. I did not like her.
I did not like her because every time I saw the lack of modulation in her voice, I heard my own unmodulated monotone flung back in my face.
I did not like her because I could see that she got overloaded the same way I did, and I saw overload as a horrible flaw on my part, and did not want to see how it looked on anyone else.
I did not like her because I could read her body language, and her emotions seemed the same kind of raw that mine always were.
I did not like her because she lacked the emotional self-control that I also lacked and hated myself for lacking.
I did not like her because every time I saw her, it was like looking in a mirror. I hated to know what I looked like. Bullies and teachers had made it very clear to me which of my traits were desirable and which were not. Every time I saw myself I saw all those undesirable traits to my disgust and shame. And that is what happened when I saw Jessica. It wasn’t as much that I didn’t like her. I never got to know her very well. It’s that her presence made me profoundly uncomfortable with myself and reflected back and amplified every bit of self-hatred I experienced on a daily basis. I experienced her presence as pain.
Dave Hingsburger has told stories of a woman with, if I remember correctly, Williams syndrome, which tends to come with a certain shape of face. If she saw another person with Williams syndrome, or saw her face in a reflective surface, she would try to pummel her own face into unrecognizability.
I understand why she did this. I shouldn’t understand it — nobody should — but I do. I know what it is like to learn young that you are disgusting, defective, freakish, and shameful. I know what it is like to experience the presence of a person who shares your “defective” traits, not as someone who understands you, but as someone who brings all your self-hatred to the forefront.
What I want to know is why we live in a society that teaches so many disabled kids this lesson so young. I’m not the only person I’ve heard of who had similar experiences as a child, by far. As a child, I should have perceived this girl and others I met like her as people I could understand more easily and maybe even, if we got along well in other ways, make friends with. As it was, I don’t think I was particularly unfriendly to her, but I don’t think I was friendly either. (I only knew her for a year.) And I certainly was terrified of her and every sight of her made me ashamed and disgusted with myself.
Ableism (even on the individual rather than systemic level) doesn’t just affect how non-disabled people treat disabled people. It affects how disabled people think about ourselves, and about other disabled people. I don’t think it’s a coincidence that there are hierarchies in the disability community (more like communities, since there are more than one). People who are seen as better and worse. Terror of being associated with the wrong kinds of disabled people.
I have been in all parts of those hierarchies in different communities. I have been considered the most severely disabled (and hence for some reason undesirable) person in certain institutions. I have been put into the “top” academic class in special education (where they taught things I already knew how to do) and had people bewildered that my best friend was someone from the “bottom” one (where they were taught things I still don’t know how to do). I have been only able to sit in one spot and drool, and I have been told by professionals that I “could do better” than day programs that had people who drooled in them. I have been seen in various places as the weirdest, the most normal, and everything in between, and I’ve had different status assigned to me for each of those things depending on whether weirdness or normalcy is more valued. I’ve played along with these hierarchies, and resisted them, at different points in my life, and in different ways.
And I’m convinced a lot of the hierarchies come from this same internalization of all the ableist values we’re force-fed day in and day out.
I have also grown up being told that who I am is so deeply wrong that by a very young age I had already acquired a revulsion towards anyone who was “deeply wrong” in the same ways. This happened through day-in day-out bullying at school but was encouraged by teachers as well. People were always pointing various things out to me as major flaws and that’s how I came to see them, as disconnected from anything good about myself, but uncontrollable. I remember my horror when my ability to hide some of those “flaws” (a little, and for a short time) began to deteriorate and I saw that I was unable to avoid the category of people I clearly belonged in, and had no effective tools to deal with this realization because I couldn’t even communicate about it. And I remember the level of revulsion I felt when I saw Jessica, a perfectly nice girl my own age who had similar interests to me and was very comprehensible to me. Even her comprehensibility repelled me because I could see so much of what was going on underneath the surface — something I could not see in other people — and so much of it mirrored my worst fears about myself.
I want to know how this sets in so early.
I want to know how it can be stopped.
I still find something disgusting: Not my existence, not Jessica’s existence, but the structures of a society that allows and encourages this to happen to the minds of children, that some of us end up finding ourselves and those most like us disgusting and repellent.