Friday, November 1, 2013

Autistics Speaking Day: Speaking Truth to Power part 2

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.
Several hours after the initial incident, the tremendous access fail/power trip, things were still not ok.

I spent the few hours waiting for Jim Sinclair to deign to actually speak to us chewing on my hand under my weighted blanket. I was upset because this is not supposed to happen at Autreat. At Autreat things are supposed to be accessible. "We do not discriminate on basis of disability or lack thereof," it says. Autreat is supposed to understand that sensory issues are a thing, and that co occurring conditions are a thing, and it is supposed to be a place where access is granted without a fuss.

The "go be somewhere else then" is not a thing that is supposed to happen at Autreat. No. That is not how it is supposed to be. And I could not stop crying and shaking about it because it is the same damn access fail as everyone else ever, that it always turns into "go be somewhere else". That it becomes "you're an extreme minority so fuck off of my party".

And that is the thought loop I was on when Jim deigned to show up. I'm not good at time and at order of things but that, I remember, that I was on that loop. I was on that loop & people were telling me that it wasn't like that, that Autreat was better than that.

And that it was immediately about how Cara was so traumatized and wronged because she said she was. Not asking me or Katie or Shaun or anyone else what had happened. Telling us that Cara was not doing well. This was not a good way to start. At all. Someone nearly triggers someone's potentially fatal medical condition (as I was definitely auratastic, technically did trigger it) and it is all about that person? What is this nonsense?

Only after telling us all about Cara did Jim ask us what happened. And we told xem as coherent a narrative as possible. I was upset and shaky and struggle with words even in good times, but the story was narrative and the high points (low points?) were hit.

Jim kept asking us where Hannah was in the story. This was odd. Hannah was on the couch while Cara titrated the volume for her. No, no one was blaming Hannah because, while she is a grownass adult, Cara let her lay on the couch and adjusted the volume at her command. It was really odd to me both at the time and now. It seemed irrelevant. It still seems irrelevant unless I am going to be uncharitable and ascribe motivations (which people have been doing to me for months, but that's getting ahead of myself). So, precious Hannah was on the couch. That's where.

And there was barely a cursory anything about what had happened. There was a lot of "I can't believe Cara would do that" and some lip service to how it shouldn't have been a thing, but the fact is it was a thing and telling me that Cara wouldn't do something she did, in fact, do is not helpful. It is the opposite of helpful.

Jim said lots of words. Some of those words were about seeing to it that this didn't happen again, beginning with the TV. The TV should never have been a thing was one of my frustrations-if Cara had been there from the beginning, even if she isn't autistic she should have known better, especially as she is throwing planning committee status around. It is pretty much Autism 101 that loud things are a problem. That loud things in common areas are an access barrier, even without conditions that make them medically dangerous. Random Jackass #22 off the street whose entire autism education is mass media knows that putting a TV in the common area a group of Autistics share is a poor choice.

I was not and continue to not be impressed with the planning committee managing to miss that one. 

Jim's reaction to Cara pulling the planning committee card is also not impressive; telling me that she's not on site as a planning committee site contact or whatever the title is doesn't really help. She is throwing around a position of perceived authority as a means of getting the upper hand in a conflict (that shouldn't exist because access needs trump optional preferences. Except not in Autreatland). That is not acceptable. You don't get to do that.

Somewhere in there were words as well explaining that it took hours to get up there and people were stressed because there'd already been a number of ER trips. This was apparently unironic, though Katie & Shaun's quick action and noticing that I was not fucking around were responsible for preventing another ER trip. And that ER trip would have been quite the adventure, as folks there weren't particularly familiar with either my communication idiosyncrasies or my flavor of epilepsy. Pointing this out did not seem to change the flow of words.

Other words were had that seemed to be telling Shaun & Katie that they fucked up with acting quickly to prevent an emergency that could have not been triggered easily in the first place. How they weren't nice enough or NT acting enough or something. Many words were spent on the idea of people having safety plans on file, that people should be designated to be supporters who thought they could do it. This baffles me. Autistic people are going to be Autistic regardless of what is happening. They did exactly the right thing, or tried to: neutralize the threat. Find somewhere not threatening. Be ready for the torrent of upset about how fucked up it is that I can't be places because other people are selfish sacks of crap. They did that. That's pretty much what can be expected. I could see my NT friend unplugging the TV in the situation. That's pretty aggressive. Katie & Shaun did the right thing and yet it seemed that we were being told that doing the right thing was wrong because logic I could not follow.

I shut down pretty substantially during the meeting. Between feeling like I had to defend my right to be epileptic in public--exactly what Autreat is not supposed to be like--and having attention diverted onto how Cara was not having a great time either and the minimization of things I checked out. It didn't fucking matter. It was discouraging and it was shitty. It was backwards upside down land. The choices were shut down, or keep bursting into tears and failing spectacularly to be heard. My brain decided that checking  out was a wiser use of my resources; I was confused and crying and just confused is far much less exhausting.

Installment 3 is the next morning. Which was not better.


Anonymous said...

As I read more of your experience I am so angry. This is so fucked up. I've been told that Autreat is supposed to be so sensory-friendly that people don't even clap. After experiencing my own noise-sensitivity nightmare at another autism conference, I had vowed to go to Autreat instead of that conference, and it makes me angry to read that Autreat fails in this realm also.

Lonhar said...

Links to all 7 parts:
Part 1

Part 2

Part 3

Part 4

Part 5

Part 6

Part 7