I was caught off-guard in a major way earlier today at the park. I was already jumpy and out of sorts after my staff had, accidentally and as a result of a sudden mechanical problem, almost squished my dog’s head in a car window. Then at the park we met a special educator.
I can only blame my lack of having my guard up on the earlier things today and my general cognitive friedness lately. I answered every question she had, in detail, in more detail than I like to give strangers. She was a special ed teacher, she had a few autistic students, and wanted information about communication devices.
Generally, I’m willing to give information about communication devices to people who want that information. It’s when they start getting into the mechanics of my own functioning that I start to get antsy. But I had no way of stopping the questions or my responses to them at the time. I’m not sure I can explain how this feels to a non-autistic person and have it make any sense. It’s a sense of violation, but at the same time I did absolutely nothing to stop her or let her know things were getting invasive. I didn’t have any brain left over for that, I was too busy answering questions.
To make matters worse, my staff, who had only just met me for the first time this morning, started answering questions and volunteering information that I wasn’t comfortable with. She told the person about my website. She told the person information about me that isn’t even true, like that I never need anyone to push my wheelchair or anything. She based this on the fact that I didn’t want anyone to push it on the level ground in my apartment building or on the mostly-level ground of the park. Today. She talked about me in the third person, giving out information both true and false that I’d never told her she was allowed to give. And I didn’t — couldn’t — stop her.
One of the reasons that people in my position have such a hard time enforcing such simple rights as privacy, is because everyone acts like those rights aren’t there to begin with, like it’s totally natural to be discussing the intimate details of how someone’s body functions on a day to day basis.
And I can’t figure out how she figured she knew all those things about me, or could state them in the particular knowing but totally inaccurate way she did. I have no idea not only how she decided she had the right, but how she decided she even knew me well enough. She herself judged the interaction a success based on how curious this other woman was about me and how receptive she was to all the information I gave her.
What bothers me is that failing to provide the information did not even cross my mind. That my staff, rather than doing what she’s supposed to do and actively displaying both to me and to the other person that I have a right to privacy, volunteered all sorts of information that I would have never given out on my own. Partly because some of the information was dead wrong, and certainly not the kind of thing that a person could know about me in a day.
This feels like a less intense version of the time that two people stood in front of me touching me, talking about sex, and trying to get me into a car with them, and I didn’t realize what was going on until hours later, when I was at home and had time to figure it out. Fortunately some of my instinctive responses at the time — not to them, but to other aspects of the situation — saved me from the fate they were planning for me.
While today was not as extreme, the sensation is similar: Two people were being invasive and intrusive, not physically but in other ways, and I did not even think to stop them until long after I wasn’t talking to them anymore. True, they were not being intentionally predatory the way the sex-talking couple were, but they were still being invasive, whether they knew it or not. Not knowing something is wrong doesn’t make it right.
I don’t know what to do. I don’t know how to explain this to anyone who’s never been there, in a way that makes sense. Maybe this: I’m supposed to be learning not to let people into my apartment just because they knock on my door. Because of this, staff are supposed to knock and wait for me to open the door or tell them to come in. They are not supposed to do what they’d done before, and just enter my apartment as soon as they got here. In the same way as I lack the standard alarm at strangers entering my home, I also lack the standard alarm at strangers both asking me personal questions and talking as if they know things about me that no stranger could possibly know. Just like staff are supposed to be making it easier for me to do things the right way with doors, they should be making it easier, not harder, for me to resist personal questions. In fact, I bet most of them are trained to, because I’ve discussed this extensively with my case manager.
I still don’t know what to do. This person now knows things about me, some of which almost nobody on the Internet knows and only a few people in the offline world either. I don’t know anything about her other than that she’s a special ed teacher and what kind of dogs she has. This seems uneven, disturbing even, but I don’t know what to do about it. I especially don’t know what to do with the fact that she’s been given false information or at best half-truths about me by someone who doesn’t know me at all but apparently thinks she does.