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1:09am October 10, 2013

➸ "You don't need this junk. You need a cat.": clatterbane: It’s one of those days that what I can apparently do is...

thegreenanole:

clatterbane:

It’s one of those days that what I can apparently do is mess around on the web and/or listen to cheesy metal.

And I’m trying not to kick myself too much, because I kind of overdid yesterday. And there’s not really anything wrong with that, anyway.

I just get tired sometimes of…


I have to fly out to AutCom tomorrow.

And present Friday and Saturday.

And I got so little of what I meant to get done for it this week, done. Aaargh.

Sending love and solidarity and good vibes to everyone. Cause we all have times like this.


AutCom… Lots of memories there.  I wish you lots of the good kind.

My body, especially under stress, goes out of my control. To where I may be unable to move, may be moving all over the place, but I can’t control my reactions to other people and they often think I’m an unperson.

But one day, leaning against a wall, not even able to move my eyes, Sandra Radisch’s staff person walked up and complimented me on my talk. I couldn’t respond. She didn’t care. She didn’t speak with even the slightest sense that she saw me as not there. Later, I cried.

They didn’t bet an eyelash when I had to present from the floor after slamming myself into the walls for ten minutes.  Then I got a migraine and some godawful shutdown and my body froze down the middle, half limp, half rigid.  Someone helped me type when I couldn’t BOTH lift my hand on my own AND choose the letter. Nobody saw it as odd that I’d gone from ten finger typing to assistive typing in five minutes.

These acceptances were a big deal to me. Autreat tries to be as accepting, but it is by far dominated by people whose bodies don’t behave like that except, sometimes, under the most extreme conditions, for brief periods.  But most of them don’t live it.   And most at AutCom do. And that makes a difference even for those with the best of intentions, just as AutCom has had its own frictions in the opposite directions, like assuming anyone who talks fluently is “high functioning” enough to handle changes in routine. Lots of assumptions all around.

I’ve run afoul of AutCom too, been not like my childed during my own presentation… switched at the last minute to include pro guardianship speakers when it was supposed to be me and one other guy telling severely disabled people how to avoid guardianship.  And then that same woman drive by snarked my private conversations the rest of the day even after knowing she’d driven me into a massive head banging meltdown on national TV.

Then there was my last flight to AutCom, followed by collapsing and turning grey and feeling awful for frightening people with my health problems.

But my history with being unable to control my body is a history of misunderstanding at best and abuse at worst.  One person used to lock me outside every time I became slowed down and unable to speak. He did it to teach me I would not receive negative attention for being unable to control my body. What I learned is that people who should know better are so egocentric that they think our neurological dysfunction is all about what we want from them, as if their attention is so desirable.

In that context the ways AutCom people treated me like an ordinary person are still often enough to make me cry, remembering. 

Other people report condescension from some people there. I don’t doubt it.  I will never be one of those people who has found my home in the perfect conference. I have seen the bad side of AutCom just as I’ve seen the good and bad sides of Autreat. When they were good they were very very good, and when they were bad they were horrid, as the saying goes.

I hope you experience the best side of AutCom that you can. I hope you can rest after presenting, it’s exhausting work. I hope you enjoy yourself as much as possible and avoid the messed up parts of things as much as possible.  And the best of health throughout. I even hope maybe you get one of you those experiences like I’ve had where you later cry because at your most vulnerable they treated you like a real, competent person.