Some background first:
This Autistics Speaking Day, I am going to speak truth that certain folks with power in the larger Autistic community would rather I kept to myself. An access fail went down at Autreat 2013. The official incident report is a) not an incident report and b) utterly devoid of "having consulted with the person it actually happened to". Now it's my turn to report on the incident, and the ugly underbelly that was revealed in the immediate and distant aftermath.
Autreat 2013 was my second Autreat. I started saving to go back the day I got home from 2012, and I crowdsourced a local friend to go with me as well. It's a big financial undertaking, and a time undertaking as well, as it is a Monday-Friday event. Since we are from the west coast this means leaving a day early, flying back a day late. In short, I really wanted to go. I was invested in the success. Hell, I even prepared a presentation. I believed that Autreat was a safe place to bring a friend to, a place where it was ok to be. They make sure to ask about access needs, so one expects they're using that information.
Keep coming back to those things throughout this series.
The first few days of Autreat 2013 were not the magic that they were in 2012, but they were pretty good. I got quality face time with people who I know and love, and met some new people. A big group of people I know from online came and seeing them was a treat and a half. And then it was Wednesday. The incident on Wednesday night & the continued mishandling of it has eclipsed every other memory of Autreat I have this year, & tainted many from last year.
So, let's talk about Wednesday. Several folks were in the one and only kitchen with the one and only fridge, the one and only place someone could prepare meat. I was invited to dine on meat with some folks who know that my protein/fat/general calorie needs were not being met on the meal plan. In the same room as the one and only kitchenette are some soft pieces of furniture, stacks of nouns (sorry, they're objects, that's what I've got), and a TV. Also some of the most hellish fluorescent lights I've ever seen.
The TV was on, and loud. The lights were on, and bright. People kept leaving the room, citing the volume as making the room inhospitable. I didn't want to be in there either, with the light and the sound I was getting seizurey, but it's rude to just expect someone to cook for you, right? I took a walk to unseizurefy in the room next door--I was probably right on edge at that moment, the friends with me were acting as though I was acting seizurey--& when we came back in, it was, if possible, even louder.
So I asked the people who were using the TV, Hannah and Cara Wilson, if they could turn it down. No, they cannot, says Cara, because Hannah has a right to use the room too. Except Hannah's use was effectively chasing everyone else out of the room where they were storing the food. I sarcastically said well clearly autistic people can't care about other people, and she said, not sarcastically, that not caring about other people is what autism is!
Someone at Autreat, Cara Wilson, asserted that the definition of autism is not caring about other people.
I left the room abruptly because I was very seizurey at this point-I can't really do this whole "on the verge" thing for a long time. It gets worse, not better. And then I had to come back in for my backpack, which had my key to my room and had my rescue meds.
When I got back in, it was still loud and food was not done. And Cara was still crouched by the TV, manually calibrating the volume for her daughter Hannah, who was lounging in some fashion on the couch.
And then the TV, already loud, already booming with subwooferage, hit the forbidden frequency of bass. The seizuregenic one. Everyone else hit the floor, hands over ears, I yelled that it needed down NOW because it was a seizure trigger, Katie tried to turn down the TV, but it never got quieter and the floor kept shaking.
Cara Wilson said these things to me:
She told me that I wasn't going to die from a seizure (I have before, in 2005. I got better).
She told me that seizures are not a big deal (my actual doctor disagrees).
She told me that Hannah's want to watch TV matters more than anyone's sensory or medical needs.
She told me to go be somewhere else if it bothered me that much.
She told me that she was there from the beginning and is planning committee, ergo, she does what she wants.
Let me say that last one again: Cara Wilson pulled out "I'm planning committee" and "I have been here from the beginning" as reasons that she didn't need to take someone's access needs seriously. As reasons to dismiss someone's very real, documented, presented to a lot of people before hand medical issues. Because Hannah gets to do whatever the fuck she wants at Autreat, Cara will see to that! And it's ok because she's been there from the beginning and because, Doctor Cara says "autistics don't care about other people" is the definition of autism.
So it was loud and it was terrible and there was yelling and the ground was shaking and Katie & Shaun helped me leave the room with my backpack. Cara tried to follow me, still yelling at me, though I was at the point of stress and seizure activity where I do not know what the words were. I say tried because Yes, That Too's Alyssa saw what was going on and kept getting between her & me so we could get to the elevator and upstairs.
So that was the beginning of this whole nightmare, where what I thought was my community, a good community, turned access completely backwards and upside down in name of ego and claiming seniority. The beginning, and terrible, and never should have happened, but nowhere near the end.
Next episode: The "immediate" aftermath (immediate here meaning "a few hours later")