Thursday, October 31, 2013

Autistics Speaking Day: Speaking truth to power. AUTISTIC power.

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.
Some background first:

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")

Friday, October 4, 2013

If you don't use your words you won't be indistinguishable.

"What's wrong with saying 'use your words'? My son's ABA therapists told me to!"

Yes, and your son's ABA therapists jobs are dependent on the promise of indistinguishability, their entire professional life revolves around creating a performance of typicality, not with helping Autistic people actually be healthy happy Autistic people. The whole indistinguishability series is all about that. Today, let's talk about "use your words". This will be a trip through all the levels on which that phrase is not awesome, semi stream of consciousness style.

So, what is wrong with "use your words"? Let's think for a moment. When do you say that? Do you say it when you have no idea what I am communicating? No you do not. Not generally. Those of you who give a shit establish if it's urgent, life threatening or something, first. But you know I'm not dying? You have a pretty good idea what I'm saying? "Use your words!"

This is you holding my needs and wants hostage to my ability to communicate your way. Once you're reasonably sure I am not actively being mauled by a bear? You've decided it isn't important enough to me if I don't communicate it how you want.

This is an extremely dangerous assumption to make, and completely backwards. If something is urgent and important, words are hard. Your brain may go to words first. Mine does not. Not even a little. "Use your hands & sounds" is a better way to get useful communication from me when something is urgent and important. What my body does? Far more reliable than what my mouth says.

The less impact and importance my speech has, the more reliable it is, especially in a real-time communication situation. That part of my brain shuts down when what I say has immediate consequences of any significance.

"Use your words" assumes the exact opposite of this. It assumes my words mean more under duress. They do not. You are going to get whatever words fall out of my mouth in an order that may or may not make any sense or relate at all to what I am trying to convey. It might even be the opposite of what I mean.

Making that assumption comes from a dangerous place. When you demand that I "use my words", the underlying attitude is that I can but am choosing not to. That I am intentionally doing something to make my life more difficult. No, I am fucking not flapping, semi-signing, making non-word sounds, crying, starting and stopping words just to piss you off. Allistics act like we're just trying to make their lives difficult or add annoyance to their day. So they tell us to use our words, like it's just that simple.

But if we could, we would be. Let's walk in some Autistic shoes. Is flailing and sound making efficient? No. No it is not. It causes me far more actual problems than it could possibly ever cause you. "Use your words" says that I am choosing the non-awesome results of being unable to speak in that moment. It's really presumptuous, actually, for you to make that assumption. It's very allistic-centering.

"Use your words" holds my needs hostage to performance of typicality and says I do not deserve to have my needs met if I cannot make that performance work. That is what you are saying when you tell me to use my words.

And you don't even really want my words. My words come in atypical syntax (which apparently is charming when I'm not trying to communicate something that you don't want to hear) and I do, in fact, say "fuck" a lot. Especially under duress. That is not the word you want when you condescendingly tell me to use my words. You want your sentence construction. You want "polite" and "respectful" and the genuine words I have access to are not perceived as either-not the words I can use in a stress situation.

The result of this and of a childhood of "use your words" isn't less swearing or more standard syntax. It is a library of scripts. My grocery store small-talk script is unlikely to be useful--and has actively sabotaged medical care when the nurse triggered the "I'm-fine-thanks-how-are-you?" sing song. Having to fall back on scripts rather than use my natural means severely inhibits communication--my message is falsely constrained to the socially appropriate things I can echo under stress.

They may not all sound like echoes. If a script is caught as a script, it is "meaningless echolalia" and not communication, unless of course it fits the least irritating narrative for the allistics involved (see: the nurses who decided I was fine when they triggered the grocery store script. I had cysts hemorrhaging on my ovaries at the time. Plural cysts. This wasn't life threatening but it causes scarring and incredible pain).

"Use your words" is silencing. "Use your words" is a tool used to silence those of us who cannot-not will not, can not, express ourselves on your terms all the time. "Use your words" is yet another thing that promotes a facade of normalcy at the expense of our very real needs and desires. "Use your words" is yet another thing that demands performance, or else. "Use your words" is emblematic of the idea that only typical people have a right to have needs or wants. It is a Lovaas-esque "the child has no right to behave bizarrely" tactic that pretends we are nothing but our superficial behavior, and that we can choose to change that if there is a strong enough reinforcer.

"Use your words" is oppressive ableist bullshit. These are my words: Touch your fucking nose.