It’s come to my attention (and been commented in my blog) that some people appear to believe that I am being used by various people. I suppose it’s more comforting for some people to believe that, than to believe that I could make my own decisions about which people, and which viewpoints, I prefer to associate myself with.
(Although I’ve also been told recently that apparently being severely disabled should make me incapable of even knowing my sexual preference or deciding whether to have children or not, so go figure. Hint on that one: It, is, done, all, the, time.)
This weekend Kathleen Seidel and her family (including autistic kid) came by. They visited me and Laura Tisoncik on their way somewhere, just to hang out. They walked my dog to the park with me, then came back and took me and Laura out to dinner, then hung out and talked for a bit afterwards.
It always amazes me, actually knowing Kathleen, how much vitriol is aimed in her direction. I know her as a nice person who cares deeply about other people, including autistic people, and who is working very hard not just for her child but for other autistic people. I have a fairly accurate bullshit-meter, and Kathleen does not peg it in any way. She also drove me to AutCom awhile back, gave me a good deal of assistance in the hotel (even down to facilitation when I needed my arm held so I could type), and read my speech for me, which was all about how to best provide assistance for autistic people, what does and doesn’t work. We gave that speech there alongside three other autistic people, one also who uses typing to communicate (but can then read his words allowed), and two who speak.
There was no exploitation going on — if anything, I was using Kathleen for a lot of assistance that I don’t normally expect from people, that she gave uncomplainingly the entire time. She has in the past even driven out here to provide assistance and backup at crucial meetings with the developmental services people who had wanted me to live in a more restrictive setting. She came out and helped me fight that. She strikes me very much as a person who doesn’t just talk the talk, she walks the walk. And she’s also generous and funny and interesting as a person, hence the fact that we just hang out sometimes. Our relationship is one of equals, it’s not even the sort of mentor relationship I have had with Laura, it’s just we’re people who like each other and have fun talking, and also happen to agree on a lot of disability politics.
Similarly, I met Anne Bevington awhile back at a booksigning by Dawn Prince-Hughes. She later came by my house to help me out when my staff was sick. She’s a lawyer with an autistic son. She also wrote a letter for me, in her legal capacity, when I was facing that same threat of a more restrictive living environment. And also volunteered to come to meetings with the Regional Center in California as my lawyer. Again, she’s a very nice person, who does more than just talk about things.
And then there’s Laura herself. She sacrificed pretty close to everything else in her life for awhile trying to get me on my feet in early adulthood, when very few other people knew what to do. She gave me step by step instructions on everything, sometimes for 12, 24, 36 hours straight, because I had so much trouble moving (compounded by having to do so many things, and not getting enough food to eat) that I needed constant reminders on what to do with every limb. She did this because she was my friend, and because she knew what the alternatives were. She helped me get services, and she helped me recover from my experiences in institutions enough that I’m no longer in a constant state of flashback. During that time period, she put many of her projects on the side in order to assist me, and her health deteriorated from lack of sleep and stress. (Note: I don’t think this is a natural effect of a disabled person on someone, I think it’s a natural effect of supports not being distributed well enough, so that everything falls onto one person.)
And she did this, not to be a do-gooder, but because she cared about me and thought it was the right thing to do — she also helped me gain a lot of skills I didn’t have at the time, including many related to communication. She did not want me to end up institutionalized or, like she had been at points in her life, homeless. While these days our relationship is far more equal — we even live next door to each other, and we help each other out pretty close to equally, if alternately — at that point she was doing way more for me than most people would for someone. (Relationships don’t have to be exactly equal at every point in time, that’s kind of unnatural given how humans work, and it also becomes ableist as an idea.)
And yet people accused her once of “using” me too. They assumed that she wrote my website, and stuck my pictures alongside her writing. When really, if it’s in sheer amount of assistance received from someone else, she’s done way more for me in terms of actual physical tasks and stuff, and at a lot more sacrifice to herself. But people don’t see that, they just see one person who looks more normal, and one person who looks less normal, and they see the one who’s more normal exploiting the one who’s less normal. Even if the person who’s less normal comes up with an idea, it’ll be credited to the more normal person.
I’ll also note that I’m selective about who I allow to assist me with certain things. I don’t let people stick around just because they are (or think they are) doing something for me. I’ve had both autistic and non-autistic people try that, and I tend to stop talking to them where possible. The people I end up liking, treat me with respect, they don’t treat me like I’m beholden to them (and have to like them, etc) if they do something for me, they just treat me like someone they like.
And what’s happening here, is that, I’m apparently, supposedly, not really choosing my friends, or my opinions. Even when I am the one coming up with the opinions, other people are accused of putting those opinions in my mouth — that’s even if I influenced them, and not the other way around, mind you. Last year when there was a major conflict at my apartment complex, I sometimes had ideas, and then Laura followed up on them, but she was accused of leading me into these things even if I led her into them. They basically did the “Don’t exploit the poor little retarded woman” line and even if I was coming up with some of the ideas they wouldn’t believe it.
It’s strange to me, though. I’ve been exploited by some people, and those people are often held up as paragons of virtue. But when I form friendships (which by the way, for most of my life I didn’t have, so this is amazing, that I even have casual friends now) of my own free will, and relationships based on shared opinions, in which our opinions flow back and forth between us freely, with kind, generous, funny, cool people that I happen to like and who care deeply about the world and other people, who sometimes help me out and I sometimes help them out, and so forth, then they are somehow evil and exploitative, and I am somehow their victim. How can these people — who seem totally genuine to me, more genuine than most people, and their words match their actions in so many ways — be the supposedly hateful, vicious, cruel, neglectful, exploitative people that others make them into? Just because, I suppose, their (and my) opinions are unpopular.
So just for reference: I don’t want anyone’s pity for anything, but least of all for having the great friends I have, or holding my well-considered political opinions.
Of course, this reply will probably be considered useless. The person who brought up exploitation also said, and I quote, “I don’t care what Amanda Baggs tells us now under the influence of Neurodiversity. Her opinion means nothing as it it the words of someone who has never known what it is like to enjoy life without autism.” When I tried to argue, I was told that my points are “meaningless” and that I won’t ever know independence or freedom. Oh well.