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")


Anonymous said...

Wow, this sounds like a nightmare and I'm glad you came out of it okay (at least, I hope your presence online means you're okay.) I had been hoping to go to Autreat 2014 in the hopes that it would be a more sensory-friendly place than another autism convention I've been to, but after reading this I'm seriously reconsidering.

Lia said...

And may the truth finally come out, and may the proper people (yes, you Cara and Jim!) finally be shamed for it.

Unknown said...

Glad to see this coming out in one narrative. I know it's hard, but people need to know what actually happened, not just the rambling complaints of the people who feel that they can do as they please.

Thank you. Our community needs to get better, and they won't get better if they keep silencing their critics. Your refusal to be silenced shows how committed you are to making things better for all of us, and those of us who see that will have your back.

Elizabeth J. (Ibby) Grace said...

Word. I have your back.

Anonymous said...

I wasn't there, so it is good for me to read what you say about what happened, because all I have otherwise are rumors third-hand. You are my friend and I believe you and I believe in you and I am here for you.

AutiDiva said...


The Truth Hurts until it Heals!

The world thinks We Autistics are nonconfrontational, timid, shy, unable to Articulate, Empathetically, How We FEEL and What We Are THINKING.

Well, the Worlds Got It WRONG!

It's a New Day and the NU AUtistics Are Here, To Stay!

I'm going to Law School to Fight for Human Civil Rights for the Autistic Human Being and I Will just as long as You All are willing to fight the good fight for Your Rights.

I have no faer cause I don't even know what that is :-)

Anonymous said...

there are two sides to every story. and when an organization prevents the telling of one side of it...and actively prevents the other side of it from being told, that organization has zero credibility. autreat is that organization.

Lindsay said...

I'm so sorry this happened to you! It boggles my mind that Autreat would not take into account people who have seizures, because a lot of autistic people do!

What also boggles my mind is the callousness with which Cara treated you! Someone like that does NOT deserve to be on the planning committee!

Unknown said...

This did not happen the way its being reported here. I would not, and did not treat anyone with callousness. My daughter is autistic and has epilepsy. I do not understand the reason for the continued slander. This is dividing the community.

Janna Willard said...

Dear Cara,

If this isn't how it happened, maybe you should write up how it happened from your point of view. This is Kassiane's take on things.

The truth is probably somewhere in the middle, but I doubt you are totally blameless here.

Neurodivergent K said...

Then what did happen Cara?

Did someone else tell me I wasn't going to die & titrate the TV for your daughter?

Did someone else tell me autistics can't care about other people?

Did someone else tell me that they were on the planning committee, there from the beginning, and therefore they did what they wanted? (while you were teaching Hannah she does whatever the fuck she wants, by the way, I was learning how to defend myself against physical attacks from people twice my size. Being there wasn't exactly an option. But thanks for the power trip!)

Jim and Phil may believe your doctored version of the story, but they also failed spectacularly to ask anyone else what actually happened. Shit, at this point YOU may believe your doctored version of the story.

The truth, though, is that you, yes you, created an access violation and argued about it.

Alexander Cheezem said...

I was there, Cara, for the discussion referenced in Part Two. While Kassiane's account is rather broken and somewhat incoherent, reflecting the state of her memory and the extent to which she was triggered and distressed, and leaves stuff out... it generally does match with the other accounts. Hell, it generally matches Jim's.

Yes, Kassiane's account is belligerent in tone, hostile, and rather snarky. This is justified.

Yes, it includes her interpretations of things -- and some of what she read into it may be questionable (if, for instance, she missed some sarcasm). This doesn't matter -- things were handled extremely poorly... and that's me being as absolutely polite as I can about the matter.

And no, not all of the fault is on your shoulders. Key parts of Kassiane's emergency plan were not followed, for instance. The problem is that any fault there was drowned out by other stuff.

Alexander Cheezem said...

So... yeah. This isn't, by any means, slander... and its continuing because the entire situation continues to be mishandled.

Also, while I mourn the division it's causing (deeply and personally, as it's pretty much gutted a leg of my support structure), that isn't Kassiane's fault.

Anonymous said...

a differing perspective who has not been given the opportunity to provide input to the official incident report does not divide a community. especially input from the victim. even if kassiane got every single thing wrong about the original incident, the way she has been treated since Autreat is deplorable. The fact that Autreat, as an organization, cannot get its shit together enough to recognize this is what is dividing the community.

Amanda said...
This comment has been removed by the author.
Amanda said...

Cara, I gotta tell you, you're not coming off as terribly persuasive or innocent right now; you are coming off as gaslighty and manipulative. If what happened according to you differs substantially in some way, you might explain HOW rather than pushing silencing buttons like telling Kassiane she's being divisive and accusing her of slandering you.

Lonhar said...

Links to all 7 parts:
Part 1

Part 2

Part 3

Part 4

Part 5

Part 6

Part 7

ratherunique said...

I stumbled upon this situation because I follow a few of y'all on twitter. I did my own reading on it and formulated a strong opinion based on what is out there. I kept that opinion to myself because I am not the most active member of this community, I was not there and I don't like to add to the problem. I was hoping for logic to prevail here but that is not going to happen, so here I go. I apologize for the length.

Kassiane had an expectation of safety at autreat. Surely she mitigates seizure triggers as bad if not worse than a TV with a sub every day. But she expects them in the open world and is defensive towards them. This trigger was unexpected. The moment Kassiane was exposed to that TV defenseless she was injured. She was as injured as I would be if I fell down my stairs and broke my knee.

Cara, you injured Kassiane. That TV was not supposed to be on. You are responsible for it and autreat as an extention. You violated the ADA.

Kassiane's controversial account of what happened from her perspective is 100% valid and should have been respected.

Cara, you and Jim call Kassiane a slanderer and a liar. You say that Kassiane was hostile. Kassiane's interpretation of all events and conversations that transpired after that trigger probably were heavily influenced by the anxiety and PTSD symptoms she was experiencing.

Hate to break this to you, but when you injured Kassiane, you are not only responsible for the seizure trigger, you are responsible for any damage caused by preexisting conditions you triggered as well, such as PTSD, child abuse trauma, loss of verbal ability. Kassiane shared her medical history and her needs with you (autreat) and you failed to meet her needs.

If Kassiane became vulgar and hostile during a meltdown triggered by your mistake, you are responsible.

If Kassiane's memory of events is as it was put in a previous comment "broken and disjointed", it is because you broke and disjointed her. You are responsible.

(Kassiane's version of the events is actually quite credible to me. I will get into that later)

Moving on. In the minimum, Jim should have been apologetic and professional to Kassiane when xe met her. I say in the minimum because from her view it seems that Kassiane was more than just an associate of autreat and a presenter. She gave autreat a years worth of free advertising on this blog. She crowdsourced a friend to go and she crowdsourced emergency medical treatment for Jim's cat.

Kassiane likely expected friendship and support from Jim and autreat leadership. Instead she discovered that autreat leadership has formed a clique that she is not a part of, no matter how much she publically supports the conference. People have a right to be douchebags on a personal level. (victims of douchebaggery have a right to call you on it as well) Jim does not have to be friends with Kassiane no matter how much she crowdsources on xyr's behalf, and it's obvious xe held her in absolutely no personal regard whatsoever.

People who host a conference however do not have a right to be unprofessional towards attendees and contributors, and Kassiane was both. Kassiane's complaint and medical condition was atrociously neglected by Jim and autreat leadership, I don't believe that it is a matter of perspective between Kassiane and autreat either. The neglect of Kassiane's complaint seems supported even by autreat's own version of events.

Kassiane and Jim agree that Kassiane agreed verbally to give the presentation. Kassiane says she was rendered defenseless and manipulated into the agreement. Autreat says her word must be taken at face value and an after the fact complaint is not valid. Once again, if the injury inflicted on Kassiane the night before and autreat's egregious neglect of her medical condition led her into survival behavior and she suffered as a result of that, it is valid and autreat is responsible.

ratherunique said...

part II

Now for Kassiane's claim that she was gaslit and manipulated by Cara and Jim respectively, and autreat's counter claim that she is a complete liar.... There is little to no evidence of this other than testimony of participants. Each side of this dispute will claim the other is biased and negate the testimony. What we have is circumstantial evidence, and that evidence is the unprofessional behavior of Jim and autreat leadership.

The situation that led to the injuring of Kassiane. Unprofessional and possibly illegal (ADA violation)

Handling of Kassiane post injury at the conference. Unprofessional.

Listserv moderation such as censoring all of Kassiane's support while allowing other users to invent beyond Machivellian conspiracy theories. General character assassination rather than addressing the issue and hurt feelings. Unprofessional and straight up hostile.

Ragequit resignation allowing for return only if the community works to "clear xyr's name". (Basicially inciting a mob) Unprofessional and hostile.

Posting on this thread accusing Kassiane of being a slanderer and of "dividing the community", rather than providing an actual defense and your own detailed perspective point by point of what occured. Ad hominem and unprofessional.

Kassiane gave rave reviews and completely unconditional support of your conference and your organization in the year preceding autreat 2013, as well as personal regard for your leader. She very clearly believed in autreat. She very clearly had her heart broken here.

This isn't "Conspiracy Theory II" I don't believe your counter claim that Kassiane is starting the Autistic Illuminati to take down Jim Sinclair, Autreat and ANI with fake seizures and panic attacks.

Jim Sinclair and ANI did a great thing by creating autreat, but you're not too big to make mistakes and you're not to big to fail. You do not have the right to throw Kassiane under the bus to protect your pristine reputation. If the community divides and if autreat disappears, You are responsible.

If you don't want to be responsible for that then take responsibility for everything else mentioned above. though I fear it might be too late.

Amanda said...

"Kassiane gave rave reviews and completely unconditional support of your conference and your organization in the year preceding autreat 2013, as well as personal regard for your leader. She very clearly believed in autreat. She very clearly had her heart broken here."
I'd just like to second this. I know about Autreat and was excited to maybe attend it someday ENTIRELY because of Kassiane's love for and excitement about the conference and many of the people involved in it. You have harmed and continue to harm someone who cared deeply about your conference, and it was up to YOU to make it right and show care for her, rather than being defensive jerks who pretend they can do no wrong.

Alexander Cheezem said...

A few points, ratherunique: One, the ADA isn't really relevant here -- we've mostly been complaining about people wronging Kassiane -- a matter of moral judgment rather than legal. Similarly, whether the conduct leading up to Kassiane being hurt was professional or not isn't really relevant -- what's important is whether or not that conduct was acceptable... and large portions of it are and were not. Large portions of it were exceedingly poor, in fact.

Two, I cannot hold Jim responsible for the initial incident. I cannot even hold Jim responsible for many aspects of the next-night follow-up (which were a result of xyr not knowing what had happened and getting xyr initial information from a biased source).

Three, statements regarding the amount of personal regard one person holds another aren't really justified. Statements regarding the amount of regard someone's actions show are. It's a subtle but important distinction.

Finally, we shouldn't expect Cara's posts here to be professional, either, and ad hominem doesn't really apply. What her statements are is simply unacceptable and often irrelevant -- a morally problematic straw man, in other words. Her actions weren't described as callous, for instance -- they were de facto described as an abuse of power and privilege. What Cara felt is irrelevant... and her intention intention and/or feelings do not change the substance of what she did.

Neurodivergent K said...

I can sure as shit hold Jim responsible for not doing due diligence & asking people who weren't Cara what happened. And for any actions that came from skipping what should be an obvious thing to do.

I also hold Jim responsible for kicking Shaun out of the room & for xyr persistent hostility & demonization of him, though that's...another part of this mostly.

Alexander Cheezem said...

I was referring to Jim's approach to the conversation immediately after, when Jim was asking people who weren't Cara what happened. The problem was that he asked Cara first, which gave him a rather biased account which colored his actions in said conversation.

Alexander Cheezem said...

Err... gave xyr a rather biased account which colored xyr actions. Gyah.

Unknown said...

Kind of new here, but de-lurking.
Reading this,just... wow. OMG WTF? Having autism means not caring about others? I have autism and I care a lot about others (probably too much). And the majority of autistic people I have met are reasonably considerate folks. We might not always understand social cues, but most of us really try to do the right thing and not hurt or upset others. It is clear that some people are really lacking in common sense and compassion.

Kassiane, it really disturbs me that so many people you've come across seem to not care about your health and safety. *hugs* I hope that things get better for you and everyone else who has experienced something similar to this.

Asptastic Allie said...

I attended autreat 2013 and while I was not present for this incident I would like to say that I am sorry you were treated with such disdain towards your health and well being. We were all made to believe this was a safe space and because of these events you were in fact put in a very unsafe place. If they do continue this retreat which is not looking very likely as no one moderates the yahoo group in at least a week they need to do much more to assure a safe environment for all.