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11:27pm May 14, 2012

STOP STOP STOP STOP STOP STOP STOP STOP STOP

Almost out the door of a conference. Just telling a staff person what a great contrast it was to the last big thing I went out to. (The gallery opening where all I could perceive was a sense of endlessly falling and getting slashed to pieces.) The paratransit van pulls up.

(I interrupt this story to note that weird wailing sounds are currently coming out of my mouth.)

We are turning around my manual chair to get on the van. Because I’d never make it through a day there in my power chair.

Then suddenly there is blonde hair and voice doing name query sounding thing so I hold up my name tag. Something about this woman makes me unable to type in her presence. I don’t have the presence of mind to realize what a bad sign that is. But I don’t need to because she confirms it for me within the next ten seconds.

Then she goes…. some sort of capital letters babble that seems to want something. I nod, then turn away to try to get the guy to move me to the van. Oh shit I just agreed to meet her. Oh well. Probably won’t matter anyway. I meet a lot of people. Never been a problem. Wrong again.

“Will you remember me?” I nod. “LOOK AT ME LOOK IN MY FACE” AND HER FACE IS REALLY CLOSE TO MINE AND IT FEELS LIKE SHE IS STANDING INSIDE ME. STOP STOP STOP NO GET AWAY STOP. Will nodding make her go away? Apparently not.

“Pinky swear that you’ll see me tomorrow.”

I don’t move.

“Come on, pinky swear.” Ridiculous sing-song voice. She advances towards me holding her pinky waaaaaaaay too close to me.

I start shaking my head and trying to back off.

She follows.

I know somehow that if she touches me it will do damage. Not in any thought I’m aware of. Just instinctively. I try to grab my blanket and pull it over my head but it’s caught.

I grab my iPad and hold it over my head and try to curl in on myself.

She seems determined to touch me. “High five? No? YOU SHITHEAD.”

?!???!

It actually went on longer but I’ve already blocked out large chunks of the encounter.

As they pull me into the van I hear her demanding information about when I’m coming tomorrow and insisting that she WILL meet me there.

And this changed me from worn out but feeling okay, to overloaded in a way that may prevent my attendance tomorrow. I don’t know if she was staff, a sibling, or one of those disabled people who’s taken on essentially a nondisabled identity with respect to other disabled people. But whichever, there was no excuse for any of that.

Apparently I looked so rattled going home that the driver twice tried to persuade the guy who helped me get upstairs, to ride with me next time so I wouldn’t be so uncomfortable. Nobody’s ever done that before.

I honestly don’t think most nondisabled people even notice that we get shit like this. Or that we feel this awful when we get it. Or that talking to us like we are children and like they are entitled to our response and time and crap (or we are shitheads) is wrong.

I’m not sure I’ll sleep tonight. Entirely because of her. It took me half the way home to feel like she wasn’t inside me anymore. And now my brain is just relentlessly spinning and swirling in circles. I don’t know what would have happened if I hadn’t been leaving just then. Nothing good.

And the other thing. Even if I’d wanted to pinky swear or high five, I wouldn’t have been able to. In fact, at first I thought that was why I was pulling away from her. It took awhile to reconstruct the degree of threat she felt like to… if not bodily integrity, something similar but invisible. Then I realized I was mostly reacting to that threat. But most people wouldn’t call it a threat because they don’t live in my brain.

(Now Fey has grabbed hold of my sock with at least one set of claws. My feet are in that sock. It doesn’t feel angry, just relaxed, but it hurts.)

Then after I got into the van all conversation happened around me. As in from the driver to the staff person and back. And it was weird. Because on the one hand I hate that. But on the other hand nobody was being demanding. Sometimes being invisible is better than being visible. Sometimes.

Fuck. Fuck. Was a really good day, looking forward to tomorrow, and now not sure what I’ll meet there even if I can go.

And what I hate. Is that she was probably staff or a nondisabled (or non-DD) sibling. And I’ve met staff and siblings before who openly admit that they like working with/hanging out with DD people because we are so fun and friendly and have great smiles and let them not have to behave like adults around us. And I so totally could picture her as having that attitude.

Just before this happened I was thinking about what to write about when I got home. It sure as hell wasn’t this.