Monday, November 18, 2013

What autism really is.

So Suzanne Wright from Autism$peaks sent out more of the same hatemongering that was tired before her grandson was even born, about how autism is terrible because the faaaaaaaaaaaamilies and we might eat food from the fridge or something and that's the worst thing ever.

That is not what autism is.

This is autism:

one very fair skinned female presenting person with light brown hair & a pink hoodie and a pink and purple haired fair skinned person with glasses, an orange shirt, and a white shoulder riding cat

Autism is friendship, the kind you can only have when you meet someone who is like you. Allistic people don't so much understand what that is, because they expect that most people are on their wavelength. But Autistic people know how special that is, because it is rare and it is precious. Someone who understands intuitively, who speaks your language, is worth their weight in something way more valuable than gold.

And autism is community that comes together. There's this idea that we can't do that, but that idea is wrong. Never have I ever seen another community that takes care of its own so much. We have our issues, as all communities do, but we also have fierce loyalty and ferociously fight for and care for our own. We know what it is to not have that. Again, we know how beautiful that is once we find it.

Autism is adventure. Or craving it at least. Jumping into that freezing cold water because it was there. And then jumping in again and again because it was freezing but it was a delight every single time. It may not be the normal thing to do, but it was better than normal. It was exhilarating.

Jumping into that water? I felt more alive than I think most people ever do. It was just me, the air, then the water. The sensation of my stomach rising? Stopped time until the water woke me up. It was actual perfection in an experience.

black and white photo of a dark haired fair skinned person doing a leap. their back foot is up by their head and their front knee is bent at an acute angle

Autism is focus. This leap is called a double stag. My focus was right on the sole of my foot, visually speaking. Internally speaking it was only on what I was doing. There was no thought as traditionally described. There was me, music, the mat, and movement. That's it. I can do that. I cannot meditate in the usual sense, but I can become one with movement. Everything else goes away.

So it is when I am focusing on something that I love. The way I love? It is deep. Autism is deep love. People write it off as special interest or obsession, but even if it's not something I can excel at, I can excel at loving what I love, loving what I do, loving who I love. Autism is being able to be consumed by love and interest, it is giving 100% because it is an insult to the thing one loves to give any less. Autism is going big or going home.

Autism is finding myself and losing everything else while jumping, flipping, spinning. And this is the best thing ever.

dark haired fair skinned adult female presenting person and dark haired fairer skinned boy presenting person on a couch. they are smiling and the boy is pressing his forehead and shoulder into the adult

And now we are back to autism is love and community. Autism is also sharing. Autism is knowing people because of autism. My young friend, Leo of Squidalicious fame, shared with me. He shared his iPad and his stims and his love. And he and his family are just a few of the many people I care about deeply who I would not have met if there was no such thing as autism.

No one ever said that being Autistic is easy. But we do say that it's worth it. We're okay. We love and deserve to be loved.

Thursday, November 7, 2013

The tyranny of indistinguishability: performance.

A consequence of everything being about "children with autism": no one thinks about the adults. They desire desperately to make us indistinguishable from peers (using a very interesting definition) and then as soon as we meet that goal, we're allbetternow. No one spares a thought for the adults who, years ago, were declared to have made the goal, hit the holy grail of "normal enough".

Indistinguishability isn't a moment though. It is an unending job, and it gets more and more complex as you age. Demands keep increasing: academic demands, including those that require figurative language and abstract thinking, increase. Time management demands increase. As we grow up, we are expected to take on more responsibilities at home and eventually move into our own homes. We're expected to get a job, do that job, maintain our own homes, all at once.

And maintain that visage of normal. We always say autism is developmental delay, not developmental stasis-and indistinguishability cannot be static either. The Allistic Emulator software we run on our Autistic operating system needs constant attention. Have you ever run an emulator program? Like all of them, mine is slow, it is buggy, and it takes up processor power that'd be better off being devoted to another task. And it constantly needs upgrading to perform anywhere close to spec.

When I was 6, I could play a board game with only slightly more meltdown potential than the other little kids. I could make reasonable, if messy, facsimiles of the art projects we did for every season in my first grade class. In structured activities-and so much of a 6 year old's life is structured-I could kind of pass. I was on the sloppy, reactive, and odd side of the bell curve, but I was on it.

At 30? Board games have largely given way to to unstructured conversations, where turn taking is marked not by handing over the dice but by nonverbal cues. The length of turns and what a turn includes varies moment to moment. Talking too much, not enough, oddly? Gets noticed. Not catching nuance? It shows. Echolalia? Stands out. Auditory processing problems are interpreted as not caring. The skills that make you slide by in first grade are not enough in adulthood. There's nowhere to hide.

If there is anything I learned from How To Be A Real Person In 1000 Data Sheets, it's that hiding is essential. Being noticed is the end of the world. When I gave a shit about my safety & about the people who taught me this--which was everyone in my life in my youth, as that's how these things tend to work--I was constantly upgrading my emulator. Constantly relearned more in depth performances. It made me tired, anxious, cranky, and it failed frequently. The failures were distinguishable in the worst kind of way.

Failures were marked in tears. In full on meltdowns. In self loathing and self injury. Inability to do anything--eat, sleep, move--because of exhaustion and inertia. Did I mention self loathing? Severe anxiety. Self isolation (if I do it first they can't!). Intimately detailed, ritualized recitations of all the ways I failed at being a human being. Because keeping up the act of humanity is what is required to be thought of as human. How very Lovaas.

So much energy was put into being a real person that I didn't have the cognitive capacity to do as well as I could at any of a number of things. Between the day to day facade and flat denial of my visual support nerds, all my learning bandwidth was diverted into running my shitty, self defeating emulator. My shitty shitty emulator did not help me do well in school. It is so stilted that it actively impeded my ability to socialize. But the whole "normalcy as top priority" stuck, even as my mother was hitting me for my grades or the disaster that was my room.

Because it was a condition of being treated as an almost person? I thought everyone worked this hard. I didn't know it was effortless for most people. I didn't understand how they did it and everything else. I didn't know why society picked this as it's normal, as the standard. The refrain of my childhood, "just be normal!" ingrained itself that far. They had me convinced that everyone has to choose that, that everyone is putting in all that effort all the time.

I was 20 when someone finally told me that I could be a kickass autistic or a shitty fake NT. It hadn't completely occurred to me that it was an option! It had to be an option shortly thereafter, because everything went to hell at once, but "be your true self" had never even crossed my mind. It took a while to find my true self. It takes effort to make my true self stand tall and proud.

Real me has friends--something I was told that I had to keep the act going to make happen. Real me has a bit of a job. Real me is getting good grades in school instead of spending energy on figuring out all sorts of interpersonal things. Real me functions better, albeit weirdly, because real me acknowledges and acommodates support needs.

Indistinguishability is tyrannical, because once you achieve it, it is the goal of every moment-to not be distinguished. That is no way to live a life. That actually isn't a good goal at all. If the best prognosis you can possibly get is "will spend life hiding and exhausted", you need to rethink your plans for that individual. Hiding is no way to live.

Friday, November 1, 2013

Autistics Speaking Day: truth to power part 7

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.
Or, what could have been.

This is a fractally fucked up thing. The initial incident was a fuckup: Something the planning committee should have noticed was going to cause a problem for Autistic people at an Autistic-safe event was not noticed. Then an allistic member of said planning committee was using said access violation, creating multiple kinds of access barriers (sensory and seizure). And then said allistic planning committee member, instead of fixing it immediately, instead started being even more terrible.

Then the handling was a fuck up: She then told a very doctored story of events to the Autistic planning committee members. Who were then 17 kinds of terrible to me. Who, in another level of fuckup, decided on a response of let's see how many more kinds of terrible we, as a community, can find!

Benoit Mandelbrot is either horrified or impressed.

Could this have been handled better? Um, obviously. Even if the TV was still there, no where was it written that Cara Wilson had to be so terrible. As awful as many Planning Committee members have been to me, I doubt that "argue with someone about their access need. Declare that Autistics can't care about other people" is part of the official manual.

Had Cara still been shitty, could it have still been handled better? Obviously. There was no need to make the entire debriefing about Cara and downplay that actual harm had been done and catastrophic harm could have been done. There was no need to chastise people reacting in the moment for not being allistic enough (also I am still not sure why fighting with someone about their access need is acceptable? And why Autistic people are being held to a higher standard than an allistic person in this instance?). And there was no need for us to wait for hours for this farce to happen.

The next day? Ok so there were plenty of people who knew I was not fine. There were also plenty of people who knew that those people might know what was up. Asking would not have been hard. Asking me what happened? Also would not have been hard, either Wednesday night or Thursday morning. It would have given the illusion of giving a shit.

And, you know? Jim could have come to my room while there was still processing time. Pushing up against the moment of means there isn't. Jim also could have not ejected Shaun. That really is rather egregious. Or it could have been made clear that not giving the presentation was acceptable. Or if it wasn't? Say it straight out.

And then instead of reacting with hateyness when I had processed, there is a whole lot junctures there where things could have been turned around. The censoring? Was pretty blatant. I certainly didn't agree to that gaslighty incident report, nor was I asked to write my own-indeed, that is what this is now. Exept I'm not pretending this is professional. This is me telling a true story about what happened.

And the spiral into the cesspool the list was last I looked? Completely shameful. It should have been prevented. That it wasn't is a complete indictment of all the people who have that power and elected to run in this direction.

There was lots of time for relationship repair. Loads of time. Contrary to popular belief (Marcie...), I am not particularly mean. I take no shit. There's a difference. I am capable of forgiveness. I forgave AutCom, for fuck's sake, because they sincerely apologized and made steps towards making things right. Now, unlike Autreat, they didn't build me into their big bad monster, to my knowledge, but forgiveness is a thing I do when people are actually sorry and not going to do it again.

There was loads of time for relationship repair. I waited months to write this out because of that. However, it is clear that this is not what Jim wants, or apparently anyone else either. There was time for that. It could have been better. Things could have been barely a thing at all.

Instead they may as well have just gotten the strobe light.

Autistics Speaking day: Truth to power, part 6

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.
Ok so this is where I regale you with ridiculous shit people have said about me that made it through moderation, even (possibly especially) after Jim took over sole moderation of the listserv. As though xyr official incident report wasn't eyebrow raisingly unprofessional enough, the cesspit that the list has turned into is pretty revolting.

Some things about me for you to remember:

-I live on SSI & student loans. So, I'm poor.
-I live on the West coast, a long costly flight from PA.
-I raised money to take a friend with me from the west coast.
-I fundraised for Jim's cat.
-I praised the ever living hell out of Autreat for a year and a bit.
-I was on the list of folks authorized to approach Jim while on an authorized-folks-only tag (unsolicited, xe sent me the email a week? before Autreat)

So this is rugpulling. Or you can listen to what other people have to say.

Oh right, another thing to keep in mind is that the reason Jim cited for being so angry and attacky is that using the word "manipulate" is ascribing motivation. I'd like you to keep that in the front of your mind.

Again, these are not in chronological order. But these are things that have been making it through moderation-while calmly worded statements by people who were actually there are not.

A gem from Marcie (who had a number of them and has never spoken to me ever): I do not want resolution, she says, I am just angry and want to be right. Does she know this from asking me? Nope. But she knows because she has read some of my blog and so she knows all she needs to know!

(what was that about ascribing intentions again?)

And then there's what has morphed into my evil plan. A number of people have been sharing this theory. It's very nice for the doctor on list to think this is financially feasible, but it is not. Nor is it sense making.

Apparently, according to these shining beacons of logic, I planned from the very beginning to go to Autreat, and take a friend to Autreat, and be scheduled to give a presentation at Autreat, and then have my access violated, and then have it poorly handled, shut down, et cetera as a pre determined plan to destroy Autreat.

You cannot make this shit up. But people are running with this one. Again, what is it about motivation attribution? Or is it ok when people are doing it to me because Reasons? And if someone can tell me on what planet that even makes sense, great thanks. I'd like to never go there ever.

There has been never ending attacking and speculation. I am a terrible human being who obviously just wanted to fuck up Jim's day.

Never mind that until this incident I held Jim in extraordinarily high esteem--which they would have known had anyone asked me (one person did. It took some shaming). Clearly because I say fuck a lot all I wanted to do was destroy things. I developed epilepsy just to inconvenience everyone else, is that where this is going?

Cara Wilson is claiming to be confused by how it went down. I'm struggling with this since she's benefiting pretty solidly from her throne in backwards land. Of course this is also my fault somehow. Oh right. She was defending her child. Her 22 year old child who was only in danger of "not getting to watch TV".

And Jim keeps talking about "clearing xyr name". Not about relationship repair. Not about not fucking up again (protip: next time don't be so subtle. Just bring the strobe and be done with it). About clearing xyr name. Again, I am confused: if xe stands so solidly by xyr actions, what needs clearing? And if xe is so convinced that the truth will do so, why is xe censoring the listserv so tightly? Why did xe not even bother talking to me about the incident report or about how poorly mangled things were? There was lots of opportunity for relationship repair. And instead it is a dogpile, with Jim at the head.

I've unfriended numerous people who think that telling me to sit down and shut up and take it is an acceptable thing to do. At least I assume they think it's acceptable since they do it and then defend their actions to me and get huffy when I say I don't tolerate pro bullying stances. 

And there is more. So. Much. More. But really there shouldn't be enough for a post, much less for a series of 7, and here we are...

It's all kinds of bullshit. And since people are going to go all 'well what would you have them do then?' I will tell you in my next post. Though "don't fuck up so fractally" is the obvious answer.

Autistics Speaking Day: truth to power part 5

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.
This is what I'd classify as the immediate aftermath.

Friday is going home day. I couldn't even with the ending session. There were voices happening that made me feel panicky, and disconnected was better than panicky. I remember basically being aimless & still wanting to go home, but it was like I was resigned to not yet.

I could not wait til Beth got back from running folks to the airport. I felt wrong. But we didn't leave til the next day, so I squashed down my escape feelings. Shut myself down even more. Keeping busy wasn't a choice, but Shutdown & Stepford mode is unfortunately something I have experience with. My autopilot is pretty tuned.

We went to the hotel. We got food. That's what I've got. And then Saturday we got up to go to the airport for the flight.

I don't really remember the flights either, except that I couldn't focus and attempted to wind some lace weight yarn of Mandy's into a ball. And failed somewhat spectacularly. It's probably still a tangled mess.

And over the next couple days I started connecting to the world again, reassociating if you will, and realized that scripts used were ones that trigger dissociation and "whatever I need to do I will power through before this turns to extrabad" reactions. I wrote about that.

And then I did something unforgiveable: I said so. That I was not mentally present, that I shouldn't have done the presentation, that I was manipulated.

And people lost their shit. How dare I use that word? Manipulation involves intent.

Except that's not quite right. Manipulation does not require saying "I am going to go be manipulative right now bwah hah hah hah". It requires having an agenda and using your communications toward that agenda.

"Fifty people are waiting to hear your presentation" (or was it 70? I don't know. It doesn't matter) is communicating clearly towards an agenda of making that presentation happen.

And, you know what? I thought that Jim would want to know. Would be mortified perhaps, but would want to know that problem solving scripts and walls of words like that wall of words and such can be experienced that way. Even though xe had effectively kicked the person acting as support person out of the room, ridiculously enough I thought xe cared about me as a human being.

I get the impression that this was a silly thought.

The timeline here, again, is fuzzy, but these are immediate things that happened. It took me til Tuesday or so to find my body enough to not hurt myself, so my brain wasn't exactly there.

But I expressed that I shouldn't have, that I was manipulated, and all the outrage! Because intent is fucking magical!

I expressed that gaslighting is a thing, and it had happened, and even more outrage!

Autreat officials have expressed the view that if you don't sit down and say "how can I be abusive today?" you are not able to be abusive. This is a dangerous attitude for anyone to have, even if they never hurt anyone. It's far too callous towards survivors and far too forgiving of abusers.

So, shit hit the fan. Got really very ugly. Somehow it turned into folks were abusing Jim by using the m word (and then the g word) and how dare we?

Stress is a thing. Rhapsody's death is a thing that I was sad about too (and I helped fundraise his care, but people keep forgetting that). No one claimed that Jim was operating at the top of xyr game.

But that's not an excuse to trigger the abuse survivor script and then get angry when told you triggered the abuse survivor script. No. Fleeing to intentions when you hurt someone is really not actually all that illustrative of good intentions.

So then moderation went on and Jim ragequit after climbing up on the cross-apparently it is gaslighting now to point out gaslighting, and rugpulling to point out that the carpet didn't hold still for two days and counting? and of course all this is all my fault.

The moderation was...interesting. In that no one who was actually there could get a post released but all sorts of speculation did. The only time a post got through was immediately ripped apart by the moderator who approved it.

Which is interesting.

Doug Kline's post stating that "Autreat isn't supposed to be safe for child abuse survivors" got through, uncontradicted. No one has had an explanation about why this is acceptable yet. But anything anyone who was actually there says? Nitpicked to death.

So I disengaged. And watched myself be turned into a monster of epic proportions, for daring to be epileptic at Autreat.

Wait, what was that I was told wasn't going to happen? That my access needs weren't going to be twisted into an excuse to be exclusionary? That's funny. Autreat did exactly this, as neatly as Portland Lindy Exchange. And they're still doing it.

Next post we shall explore my new urban legends as well as some interesting double standards.

Autistics speaking day: Truth to power part 4

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.
 When we last left, I was on my bed with my weighted blanket, unable to really word coherently or stop bursting into tears. Any question that required much thought was greeted with "I don't know!" or "I want to go home!" and a torrent of tears. Several friends were in the room with me, soggy lunch was in the room with me, folks had offered to bring me not so soggy lunch and that did happen at one point.

And this is where I start having nothing but snapshots. My incidental memory is very very good but the order in which the photos go? Not so good. This is what I remember. This is the last part of Autreat where I was connected enough to remember things.

Jim came in. I don't think xe was accompanied by anyone but Sharon and/or Beth may have walked in with xem--I know they had talked to Jim earlier. This, again, was like 10-15 minutes before I was expected to give a presentation, a presentation I was actually very excited about, one I had worked hard on, one that was relevant to the audience, and one that I was in no condition to give.

The first thing Jim said was that xe wasn't going to apologize. And I am all stocked up on bullshit, so that's fine, don't fucking lie to me. But there were and are things that are not ok and that needs to be acknowledged in a way that isn't "poor precious Cara".

And xe said poor precious Cara is in a bad way and understands that it was unfortunate, and that Hannah understands as much as she can. This particular bit was odd to me-"where is Hannah? why aren't you holding Hannah responsible?" (on the couch and because she was utterly passive except for whining about not being able to hear the tv?) was such a big thing on Wednesday night. But now the emphasis on how she couldn't really understand was odd to me. And I remember processing that it was odd.

There were a lot of words. I wasn't processing words really, not all of them. Walls of verbal text. I needed my cognitive interpreter, but my cognitive interpreter lives in Oregon and is allistic and has a day job and that was just not feasible.

So Shaun stepped in. Shaun seemed to be the only person processing what was going on in those walls of words, and Shaun is at least conversational in Stressed Out K, and was at that moment able and willing to try to straighten things out and make sure everyone understood what was going on.

This is where the official report diverges a lot from the reality I experienced. Shaun was not aggressive. Shaun was polite. I statements. Clarifying questions. Trying to make sure that I understood what was going on. Ibby was on the bed giving me hugs, and Shaun was processing for everyone and trying to make sure things were understood. And I gained some understanding and part of that understanding was that attitudes seemed to still be mightily fucked up.

Jim stated that xe felt Shaun was hostile and aggressive and announced that either Shaun left or xe did. So Shaun asked if I wanted him to leave. I burst into tears and yet another top of lungs "I don't know!" and crying because I hadn't cried enough.

Another person said to Shaun "it might be best if you leave". And I do not hold that against this person at all, she thought she was doing what was best & wasn't processing--no one was really processing--but at that point Shaun left & there was no one who could translate for me. Or possibly, who even knew how little I was processing.

I was in no shape to do that presentation. But words and "there are 50 people waiting to hear your presentation" came up several times.

Let's think on "there are 50 people waiting to hear your presentation". That is a declarative statement. That is not remotely "are you able to do your presentation?" That is a statement that induces guilt about inability, it is a statement that makes sure you know what a colossal failure and disappointment you are if you fail to deliver.

That statement tells. That statement does not ask. That statement is very concerned about 50 people. That statement gives no fucks about the person sitting on the bed unable to stop crying or figure out wants and needs.

It is not a secret that I have an abusive upbringing. It is not a secret that I had compliance training. My brain shut down. It shut off. Everything needed to end and the right answer was not "do what you need to do, everyone else will suck it up". The right answer was "go to your little fort inside your head and let autopilot do the damn presentation". And it was not going to end until I did the fucking presentation.

I don't know what the final thing was that made it happen. I know that I gave that damn presentation. I know that I was shut down, because I do not remember my presentation at all. I do not remember Alyssa's 5A at all, and I was her first witness. I do not remember the dance (which I made a set for) or dinner that night or anything. Nothing. It's gone gone gone.

Going from sobbing to Stepford is a bigass problem. It was obvious and abrupt and it is not right. Shutting someone down does not mean the problem went away. It means the problem got bigger.

And it continued to get bigger, as I will write about in the next installment.

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...

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.