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.
Links to all 7 parts:
ReplyDeletePart 1
Part 2
Part 3
Part 4
Part 5
Part 6
Part 7
I can't even think of words worthy of how to respond to this, Kassiane. "Fractally fucked up" is a perfect descriptor, and I'm left speechless and gobsmacked at how, at every possible fork in their decision tree, the people whose job it was to make sure shit didn't hit the fan chose to lob another shovelful of shit at the fan.
ReplyDeleteI just wanted to comment about how fucked up the whole situation and their handling of it was. I can't even articulate what I'm thinking about it except: I'm sorry they did that to you, I'm sorry they didn't respond appropriately, I'm sorry they jumped to conclusions, and I'm sorry they've wronged you in so many different ways. Nobody deserves that sort of treatment.
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ReplyDeleteYou're correct. I have no idea what you're intentions were, especially after reading the last 7 post. I never said or meant to imply that you are "mean", merely explosive.
ReplyDeleteSorry about double posting and deleting. There was some confusion in creating a blog profile.
ReplyDeleteAnd yet you said it over and over, that my intentions were a fight or to be right or whatever, that you didn't need to ask me because you had read other things on my blog.
ReplyDeleteAnd you still aren't asking. Though you're finally acknowledging that you don't know. Months after making assumptions.
This is me being annoyed. I read what you said and it was unfair. Everything since then was unfair. Anything fair got censored, but I don't censor.
That includes not censoring my thought that what you, and many other people, decided to say, without ever talking to me (I'm not completely convinced I've *ever* spoken to you, though I believe we spoke onlist about being physically active folks) is unfair and kind of bullshit.
Not that you asked, but I published this--all of it--because people deserve to know ALL of what happened. Context matters. The ENTIRE truth matters. Not just the edited censored POOR JIM crap.
Dear Kassianne;
ReplyDeleteFirst, I think you are an awesome young woman. You remind me so much of one of my granddaughters, and because of that I might have elevated you to an impossibly high position. I apologize for that in advance.
Also, because I do have nurturing and maternal feelings for you it makes what I want to say to you extremely difficult, yet important.
Jumping right in. Autreat. What happened to you at Autreat sucked. I feel especially sad about it because in the prior year you were so overjoyed that you had finally found family there.
Finding family and finally being accepted is beyond wonderful.It is so easy to get caught up in the euphoria to such an extent that we forget that familes,even super good families can fuck up...Bigtime.
I keep thinking about what happened at Autreat. And I cry. I cry for you. I cry for Jim. I cry for the many people who were disillusioned. I cry for the chasm this has caused in the neurodivergent community.
I started thinking about what I would have done if I were the one in charge of Autreat [not what I would have done, but what I probably SHOULD have done.
Okay, so here I am at Autreat. I am so tired. The planning has been so stressful. I have tried so hard to ensure autistic space for attendees but I know that there are probably dozens of things I could have done differently. But I have really worked at it because it is my lifes purpose. I am fatigued beyond belief and fighting a meltdown. But I am happy. I mean look at the great people here.Especially the speakers. I think of Kassianne Sibley and what an incredible and important issue she is going to speak on.
Then I hear about the problem. Crap. I sneak behind my trailer and have a cigarette to relax as much as possible and figure out what I should say or do. Hopefully no one will notice because, well, not exactly a good thing to do anyway, but especially since I am on chemotherapy for breast cancer.[ I know]
From what I heard, this whole thing got ugly. On the bright side, all people involved are beyond incredible and everything will be alright very soon. I am just being paranoid to think otherwise.
I know Kassianne is beyond upset. I also know that she has an incredible support system here and that it would be presumptuous of me to assume that I, just a silly old granny, could offer the type of support she needs. I might even accidentally make it worse.
So, I speak with person number one. OMG, she's really upset and hurt too. I talk to her and I'm sure I say a few stupid things.
I find out that you would like to speak to me. I go to see you. I try to say all the right things. But I say all the wrong things. Much stupider things than jim did. You are, understandably even more upset. I feel a meltdown coming on. I feel so tired, so confused, so stressed.
Now, this is where the difference lies. I do not handle situations like this well. Actually, Jim handles them much ideas I mentioned for preventing them in the future. You make a witty comment about the domino affect with triggers. I laugh, still crying, wishing that I could come up with funny "off the cuff" comments like you do. You tell me that you appreciate all that I have done for Autreat and that it must have been especially difficult for me because of my cancer treatments and being an old woman.
[continued, unless I acidentally deleted the first part, in which case none of this will make sense] I know that I am supposed to be comforting you, but, as usual, you are doing the comforting.
ReplyDeleteI ask someone to make sure that everything is alright in the shared area, and then you and I go down and decorate sugar cookies.While we are seeing how many red cinnamon candies we can get onto a lemon iced star, it suddenly hits me. It's almost time for Kassiannes presentation. Dilemma. I know Kassianne is still pretty shook up, definitely vulnerable. I'm not sure what to do. I really do not want to push[that's the last thing she needs] but, from everything I know about Kassianne, if she does not make this presentation, I fear that she will always regret it. Maybe I come across as pushy. Really didn't mean it. But Kassianne understands.
Wow. See how differently this turned out? All because I handled it so much less professionally than Jim would have. Whod've thunk?
Kassiane, please, take the high road in reesponse to what actually happened at Autreat. sometimes it doesn't really matter who is right, just that the right things are done to fix it. I have faith in you.
By the way, we're having a mini autistic retreat here in Colorado Feb 22 through 25th.[ at a nudist
resort] Of course you are invited but we have NO money to pay anyone. As a matter of fact we are asking every attendee, speaking or not, to throw a hundred dollars into the pot to allay expenses.
Also, with what happened to you in mind, we have a new trigger alert system that we are going to utilize at our retreat {AutHaven]
Because we are a small group, the same lodge where we sleep [roommates] will also have the kitchen and fireplace, so there will be cooking, coffee, and fireplace odors.
If you do wish to come, you do not have to speak [though we would love it] A little help in the kitchen would be great though.
Which reminds me. Not a vegetarian or vegan menu[ actually old fashioned comfort food...and prime rib] but we will make special meals for anyone requesting them in advance. [we'll try to do a little better than boca burgers, green salad and pasta with red sauce]
You can e-mail me at vickigleitz@gmail.com
I cry too, I cry too. Not a day is there that I'm not really sad about what happened. Some days sadder than others (because, well, I'm really not up for the kind of hate & accusations that have been thrown at me for months now. I don't have it in me. I just don't. I'm not as strong as people have decided I am. But I don't like to let people down so I try to pretend. And pretending is safer).
ReplyDeleteEverything is wrong and there's nothing I can do to fix it. I cannot lie and say that I'm sorry I was epileptic where Hannah was trying to watch TV, bc I am not, and apologizing for a disability sets a bad precedent. I can't lie and say I'm sorry I was triggered, cuz I have no control over that either. Nor do I have control over either the autopilot or whether other people notice it. I'm not sorry that the things to avoid another ER visit actually worked.
It sucks. It sucks. It sucked then and it continues to suck. And I wasn't even mad until the digging started. And then I was sadmad. I wrote this more sad than anything. But it needed to be said. We work through things, we learn from things that suck, if the info is out there.
I might be sending you an email. I hear Colorado in Feb is cold and glorious. And a flight to CO and $100-$200 is less than a flight across the country. Substantially.
Dear Kassianne; You have no idea how excited I am that you are considering attending AutHaven.If you decide to attend,and you are flying in, Bobby can pick you up at DIA
ReplyDeleteRegistration is before lunch on Saturday,February 22. It will be simple chili and go-withs because we want everyone to have plenty of room for dinner, which will be a traditional Thanksgiving type dinner,in Thankfulness for being able to all e together.
We have a few presentations and workshops planned. We could use more,but if we have what we have that's okay.that'll just give us more time for hanging with the deer, walking the mountain trails, de-toxifying in the sauna, playing pool and ping-pong, making jewelry, ,toasting marshmallows in the fireplace, raiding the ice cream shop, and getting to know our new friends.
My personal presentation will be on the autistic community within an already existing community in Thornton Colorado that my husband and I are planning to start [on a teeny tiny basis that, we hope will exponentially grow]
I am not entirely sure what others will be speaking on. Everything they are considering sounds incredible.
Included in the hundred dollar fee [and somehow we will come up with scholarships for those who cannot come up with that] are 3 nights lodging [shared rooms] all meals, handouts, presentations and entertainment [the last 2 provided by attendees]and a tripto the Denver Aquarium. plus, of course, your goody bag.
On Sunday, the 23rd, we have invited NTs' who have made donations to help us keep costs for the retreat down, to a 2 hour slot that includes dinner and a little education. [ which we would lov you to be part of]
I keep thinking about what happened at Autreat. Because of that I bought some stiff, sparkly red fabric and picked up some paint sticks and I am making red signs for people to hold up when there is any type of sensory issue. Since they will be interspersed throughout the room, as they are seen others will hold up signs, music turned off, lights dimmed, voices lowered, all without any screaming or begging or anything. The problem could then be calmly and lovingly taken care of. What do you think?
BTW, there are no fluorescent lights and flash bulbs are prohibited.
If you feel like dancing, we have a huge dance floor available. I will be dancing. I am old, super clumsy, my drugs have made me fat and also very stiff [half of the women on these meds are in wheel-chairs or have just said "screw the chemo, I'll just die with quality of life first] I attribute the dancing [belly dancing] to be a part of whats keeping me so mobile for now. So, a friend of mine [honestly, a friend who wants best for me] offered a $100 donation but only if I belly dance, so there will be a 2 minute presentation. People might e wanting to see some real dancing after seeing me, lol.
There are a few differences than Autreat.One, of course being smaller [and at a nudist resort. might see naked people, might not]
Two, we are not vegan, though we will provide vegan or whatever if requested.
Three, we are encouraging all attendees to share their experiences. We ask only for at least a week in advance notice so that if it is a talk, craft, or something that needs to be scheduled we can have it on the schedule.We want this to be EVERYONES retreat, not just mine.
Fourth, the cost is lower, much lower. One problem with that is that we will have no staff or cooks, or anything like that, so, we are hoping that most people will volunteer an hour or so every day to help cook, clean, ring in firewood, whatever.
Fourth, and yes I know you are brilliant. There are other brilliant people who will be there. Many autistics are very average in IQ, like me. i think that this will be the first autistic retreat for autistics, put together by NON brilliant autistics
BTW, I already have this gut feeling about something I want to put in your goody bag. It's not based on anything that you have written about at all. I just have a hunch.
Four,we cost less
Fourth 3 times? sorry, guess i have trouble with those ig numbers over one.
ReplyDeleteFourth 3 times? sorry, guess i have trouble with those ig numbers over one.
ReplyDeleteI was thinking of going to the National Convention whatever it is in Indy, but I have had a bad (flight 232) feeling about it for a while. I'm so sorry you had to go through any of this, I don't know any of this, but it feels like from start to finish you were treated very badly and every chance people had to do the right thing, they didn't. Thank you for sharing this.
ReplyDeleteI have no words for how badly I feel that you had to go through this. I didn't get on flight 232, so when it crashed I wasn't there for it. I'm not going to go to Indy either. I so hear you, and have been through things like this. I don't have epilepsy, but do have adrenal issues that can be triggered by stuff around me, and of course autism that can trigger the adrenal stuff, or vice versa, and both can be triggered by stuff and people around me. Like loud, or bright, or too much of anything or anyone. So yeah, I'm going to skip er trip(s) or possible death myself and stay home.
I'm really sorry you had to go through this, it's not right. Thank you for sharing. Wow, I'm so exhausted now. I hope you future travels and experiences will be better and that you don't have to go through anything like this again.
I'm thinking positive healing thoughts and sending love, light and hugs in whatever form you're okay with.