Friday, November 1, 2013

Autistics Speaking Day: Truth to Power installment 3

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.
As mentioned in my last post, during the wildly meandering off points meeting after a truly heinous accessibility violation at Autreat 2013, my brain shut down a bit. Nothing I could say would make the point that it wasn't ok, it shouldn't have happened, that it did happen was a big problem rather than a "thing we may want to think about not having  happen in the future", and my brain started checking out a bit.

I cried a lot Wednesday night, even after having a lot of bursting into tears and confusion during the meeting. Everything was wrong and backwards. I was bewildered. The rug kept getting pulled again and again.

I do not like being confused.

I do not like things being backwards.

I do not like things that are supposed to be accessible being not accessible if the "right" person is the one causing the access violation.

I do not like being told that things that plainly happened couldn't have happened because it "doesn't sound" like the person who did them. That's telling me my reality isn't real. That's gaslighting.

I don't respond well to confusion or frustration or bewilderment. I respond with tears. I fell asleep crying on Wednesday night.

And then I woke up convinced that leaving the room was the worst idea in the history of bad ideas. Leaving that room was not going to happen. Nope. Fuck breakfast. Fuck everything.

And the tears again. Because I cannot go without breakfast and because the world is still backwards and upside down and fucked up and wrong.

Someone brought me breakfast. I don't remember who. I remember it was rained on, a lot. It was just dumping rain. It was really unappetizing, too. Hummus and potatoes and rain water and a cup of coffee. I was more anxious than is acceptable but I drank the coffee anyway; last thing I needed was a headache.

And I had to give a presentation. But I wanted to go home. I had told Jim the night before that I wanted to go home. It was midnight, that couldn't happen, the way I was told they could make that happen made it sound mightily like they could make that  happen Thursday morning. And I wanted to go home. All I wanted out of life was to go home.

All I could do was cry. And bang my head. And panic. There might very well be a K's Head shaped dent in the wall. People were in and out all morning and I wanted to go home.

I thought maybe Phil Schwarz could make it so I could go home. He's planning committee, was a site person, and I've known him for nearly half my life. We did workshops together in 2004 or so, for fuck's sake. So several someones went to find Phil for me.

That went poorly. Very poorly. Surprisingly poorly. I'd been crying and headbanging and bursting into tears all day and it ends up with Phil yelling at me. Because he didn't know what happened. He knew what Cara said happened. And yet again it was all about poor Cara and yet again "that doesn't sound like the Cara Wilson I know". Yet again with the telling me what happened did not.

I expected way better of Phil. And all I wanted was to go home. And instead I got yelled at for preventing a medical emergency-the ER counts got brought up again, again hilariously oblivious to the fact that Shaun & Katie had prevented another one--and gaslit and the going home decidedly did not happen. Yet another rug, pulled. That awkward moment when you find out that someone you had trusted for over a decade can't be assed to ask what happened before he yells at you.

I ended up having Mandy email Phil for me, because he came in yelling and words and crying comes at a high volume for me (oh and yes I was still bursting into tears--I have the stamina of a trained athlete and the lung capacity of a choral veteran). She emailed him. Told him I wanted to go home. He said something about how he shouldn't have opened his "fucking Aspie mouth" (his words not mine), which is the closest thing I've gotten in all of this to an admission that maybe the Autreat folks aren't fucking perfect. And he told Mandy they couldn't send me home. I had heard differently from Jim the night before.

Wailing ensued. Some more. Because it was not safe to be anywhere but the room or on the way home. Autreat was not safe. Most of the words I was capable of were "I don't know" for most of the day and forcing out sentences was not particularly worth it.

People came in and out a bit morning and early afternoon. Alyssa and Ibby and others. Lunch was not appetizing either, again it was rained on and mushy. The food the other days was ok, but it was really quite unacceptable on Thursday. People came to see me-I did not go to see them. It was not safe.

Eventually I took a shower because I thought it might help the anxiety. No. I had an anxiety attack so fierce I had to sit in the shower to catch myself.

I could not give my presentation or be Alyssa's 5A First Witness or do my swing set at the dance that night or anything. No. It could not happen. I couldn't. I told several other people that I could not could not do it, that if Jim wanted it to happen, then xe probably needed to talk to me in a way that showed that Autreat was a safe space. Because it wasn't a safe place. Leaving was not safe. Leaving was inviting being attacked with seizure triggers again.

I was in no shape to give a presentation. With 10 minutes to go before said presentation (talk about cutting it close), Jim showed up at the door. And what followed was not good at all.

And I cannot write about it now. The triggering is phenomenal. Just writing about the anxiety is speeding my heart and making me want to beat my head until the thinking stops.

To be continued...