Background:
In 2008 I went to the Autcom conference, as supposedly they’re a good conference and good organization that doesn’t suck. Their board member Gail GIllingham Wylie followed me around with a flash camera, knowing that I have photosensitive epilepsy. THe parent & support person of a person I was supposed to be presenting with also really crossed the line; her son had a lot of lighting effects in his power point, I said no don’t, epilepsy, & she said to just choose to not have epilepsy, I have speech so obviously I can just, you know, not. Irony: that panel was supposed to be about not making assumptions about one ability or disability based on others.
THey were not sorry until very recently, because it wasn’t politically expedient to not be sorry anymore (I stand by that hypothesis in light of their current behavior). To prove they were dedicated to doing better, they were going to take these steps:
-actually say the S word (sorry is the s word)
-indicate they meant it
-by funding attendees from underrepresented groups
-and actually meeting my godsdamned access needs.
Um. They did one of these things. I was worried about the access needs thing bc not a single thing went out indicating flashing things aren’t ok to presenters or to attendees & I made it crystal clear that because of their history (GGW did not lose her board position for assaulting me with a deadly weapon, nor was she asked to stop by anyone she listened to. Neither did anyone from AutCom say they were sorry they condoned hurting me with their silence, although they did have members throw big whiny fits all over because I don’t drop that shit for obvious reasons).
I almost didn’t go. I almost let them eat the cost of the plane ticket, but they supposedly learned. Maybe they didn't send out the guidelines in advance because they're disorganized?
No.
We are not cool at all.
On Friday night another attendee, who I am not naming because that’s actually not necessary, took flash pictures all over the everywhere. The insert of the conference materials said no flash photography, there was time devoted to the no flash photography speech, etc etc. I said if he did it again I’d shove the camera up his nose, which is not a literal thing & my go-to for such things because it can’t be taken seriously as a threat yet is a ‘no really I mean it stop’ thing to say. He was upset & this is when his support person decided to acknowledge the rule (support people! If the folks you support need assistance in respecting rules, that is so very part of your job! To say they just can’t is presuming incompetence!). I made sure the president of AutCom knew, as she’s the one who made promises; the rest of the people I talked to dropped out of the conversation (which is why I almost decided not to go at the last minute).
And this is where the timeline gets fuzzy because I’m time agnosiac anyway & It’s a big mess of what the actual fuck. Everything happened; I might have the order wrong. Bear in mind this is an organization that made me promises to indicate they learned & are going to do better. They had 7 years to figure it out.
Just before heading down to breakfast, my conference roommate Alyssa & I got a text message from someone we were going to present with, asking if she could come talk to us. Yes, of course. Beth comes down & sayeth unto us that there’s a big argument outside her room between Emily Titon (President of Autcom), Sandi McClellan (a past president), & Linda Rammler (honestly I have no idea what her position is except volunteer). The power structure in AutCom is really weird, as the president should be able to make promises & agreements & be backed up. That isn’t a thing. Emily had told me anyone that flashed would be removed. I didn’t believe her because I’m aware of how people (read as: AutCom. They have their own prejudiced preferences) are and honestly that’s a nuclear option anyway. She was trying to fix the night before.
So that’s exciting.
When I headed downstairs with Alyssa to find breakfast, we encounter another access barrier: there is an attendee who touches everyone as they go past her. She is in the doorway. The other door does not open. It is impossible to avoid her & when asked not to touch people she ignores them (or at least she ignored my wishes; she broke into a run to touch us when we were trying to take evasive action, as saying "don't touch me" did not work). Do not violate my boundaries first thing in the morning, or indeed ever. I may use my teacher voice about how godsdamn are you people ever terrible at access. Because, um, you are. And I did. Touching me isn’t ok, flashing isn’t ok.
Apparently having boundaries isn’t allowed any more than having photosensitive epilepsy is (you want to know where I got the idea I’m not allowed access needs? It’s organizations that are supposedly ours. Are you proud?)
Like I said, now is when order gets fuzzy. So let’s just hit some highlights. People representing AutCom involved in this clusterfuck include Linda Rammler & Sandi McClennan as already indicated, as well as Anne & Eric Bakeman. I am unclear on their actual titles or the power they are supposed to have because they were wielding a lot, and things were not ok. If I specify an individual said something, by name, that means I am certain that person is who said or did it. Also for the unfamiliar, AutCom supposedly supports civil rights and has tshirts that say “presume competence” and has done much of their work with issues that effect people with more obvious or intense support needs and AAC users. Sandi was wearing one of those shirts and I believe Anne was as well.
I had many well projected (thank you choir!) words about how they can’t manage to keep a fucking promise about a fucking common access need. Yes, I swear. I did not swear at or about anyone but about behavior. People may not like profanity but it is not an attack unless used as an attack.
Attacks I endured from AutCom include:
-persistent shortening of my name without permission (this is a dominance move & is extremely disrespectful. It’s more disrespectful down a power gradient)
-Sandi telling me that I didn’t belong at AutCom, because I insist on promises being kept & on my access needs being respected.
-Being told that I was irrational for defending my access needs. This is gaslighting and it is unacceptable.
-Continual ignoring of ‘do not call me <Shortened name>. Apparently this boundary is also irrational.
-Being told that my need to not be faced with seizure triggers is less important than someone’s attachment to his camera.
-Being told that my access need not to be faced with seizure triggers is less important than board member’s unwilligness to talk to the flash camera person themselves; it's too much work to enforce the rules they agreed to
-Being told that my access needs would literally be the end of AutCom.
Not-attacks-but-still-not-ok included:
-Tone policing.
-Anne condescendingly suggested I try saying please.
-Very many iterations of “you need to politely fix it” when I had been promised I would not have to fix things, as if I have to fix them it means they didn’t actually address the issue.
-Being told to not use ‘uncomfortable language’ (meaning, ‘fuck’) while simultaneously shortening my name and telling my my access needs are not real.
-Every indication that there is no way I could be nice enough about their godsdamned access barrier that i shouldn’t have had to deal with and that they promised I wouldn’t have to deal with.
-In a real ironic twist, the folks wearing “presume competence” shirts told me the man with the camera didn’t understand, couldn’t understand, he is mostly nonspeaking (they said nonverbal. I find the distinction important for respect reasons) and has been institutionalized so he can’t possibly be held to the rule. Eric Bakeman was a real pusher of this, as was Sandi.
-Continual pushing of the idea that a grownass adult and his grownass support person cannot be expected to follow a simple rule.
-The undercurrent of “Your support needs don’t real”
-When I requested to go the fuck to home since I apparently don’t belong there, they told me I owed them presentations because they flew me out there. That was not the deal. The deal was I would give them a second chance. I don’t owe anyone shit.
-being asked the same question over and over and having my answer ignored. I don’t want a fake apology. I want people to not fuck up. I can only say that in so many ways.
-having words put in my mouth that I did not say. Don’t do that.
-consistently ignoring how apologies work (say you’re sorry, say what you’re sorry for, do a thing to try to fix, make a plan to not do again, go forth & actually do it) while doing the attacky things listed above.
-”all access needs matter” conflation of intensity. Everyone’s access matters. Potentially fatal things really do need to come first in common areas. Bodily autonomy, too, in the case of the woman insisting on touching everyone.
During this I called Emily Titon on the phone & said, effectively, "you. here. now." but as soon as she got there she was whisked away for a reason I do not know. So the president of AutCom, who made these agreements, brokered these arrangements, missed all the conflict about them. She was just whooshed off into the ether as soon as she got downstairs.
During this I called Emily Titon on the phone & said, effectively, "you. here. now." but as soon as she got there she was whisked away for a reason I do not know. So the president of AutCom, who made these agreements, brokered these arrangements, missed all the conflict about them. She was just whooshed off into the ether as soon as she got downstairs.
At some point Linda Rammler also threw a cup of coffee at (actually at) Beth, though that was not where I was. Upon being told that expecting my access needs to be met was irrational, I did also throw a cup. Mine was empty. It hit exactly where I was aiming, 10 feet above & 4 feet to the right of all people. She is not held responsible for this that I saw, although I was told to just not have epilepsy then, repeatedly, in many different ways.
Other things that I was told happened but did not personally witness included non-competence-presuming people threatening to ragequit if Emily held AutCom to their rules. They said that respecting my access needs would be the end of AutCom to my face and possibly elsewhere as well. Linda Rammler went so far as to say that enforcing the rules would prove Simon Baron-Cohen right. This is a nasty, hateful thing to say.
The gaslighting started basically immediately, also. But the thing is: there are witnesses. There were a dozen people at my side telling them they were wrong, they were fucking up, they were violating the first rule of holes (stop digging), that they were violating their own claimed values (“presume competence” and “civil rights for all”). They gave no fucks about my civil rights & said that enforcing them would destroy them. They said that the man who flashed the camera is incompetent. Those are things they did.
Apparently the man with the camera, incidentally, was sorry as soon as he understood the situation, he wanted to apologize. Yes, okay. I am actually pretty fucking reasonable. He is sorry, will not do again, kept camera in his room, we’re cool. As long as it doesn’t happen again, we’re fine.
There were many many witnesses to what went on. Loads of witnesses. Other attendees jumped in with their examples of rules being violated causing a hazardous environment for them (numerous people had issues with the touching, people were getting headaches from people ignoring the scent free policy). It’s like if you can express your needs orally, AutCom has a policy that they’re preferences. Autism does not work that way. They should know that but are not displaying an understanding of that.
After the panel I was on about parents and autistics collaborating to bring meaningful social change, Sandi did accost me (yes, it felt like that. There was no escape & I didn’t want to speak with her) to nonpologize. I say nonpologize because the words “I’m sorry” never escaped her lips, nor did acknowledgement that telling someone that they don’t belong somewhere is fucked up, nor did acknowledgement that telling someone their access needs are irrational is more fucked up. “I handled it very badly” is the closest she came to that & I felt pressured to say words that I don’t mean & therefore didn’t say them. It wasn't an apology; it was a litany of excuses. We aren’t cool. We aren’t cool at all.
It’s never cool to fly someone across the country to show them how actually you haven’t learned at all. That isn’t how “we’re sorry” works. I know I’m not allowed access needs, & this is the latest example that I can give people.. Flying me across the US to show me how much you don’t care to do better is phenomenally unacceptable. Making liars of my friends is unacceptable. Presuming incompetence when it’s easier & feels like an absolution of responsibility is never cool.
We are not cool at all.
Other people who witnessed this, and oh were there ever loads, may be writing their accounts as well. I am not the person to tell that my access needs are hard. I don't want to hear it, I already know I'm not allowed them. I fight every day for your right to supports, at least pretend you care about mine.
20 comments:
It is appalling that conferences for autistic people, 1/3 of which have forms of epilepsy, are inaccessible and dangerous for people with epilepsy.
What happened was profoundly fucked up. This must not be swept under the rug. https://wanderingautistic.wordpress.com/2015/09/28/autcom-25-human-rights-for-all/
I'm sorry you went through that. That is not cool!
Last I knew Emily was pretty decent. My regrets that the staff worked around their president for the purpose of screwing you over.
(And that people screwed you over at all.)
When these supposedly utopic "safe spaces" are created, inevitably they become safe and utopic only to the people running them and their circle of friends. If you look at human history of any society/group/nation of any size ever, this is pretty much what will happen every time. This is the standing definition of corruption.
This is never entirely preventable, but institutional democracy and some internal structure and organization (like an enforcer type person whose job would have been to deal with something like the camera person and touchy person) can control it to an extent (and give the marginalized an avenue of eventual justice). Autreat bluntly lacked any. AutCom gives the illusion of it, until the Autistic advocate serving as president is wisked away and the real power emerges, reproducing your experience at Autreat (at least from my point of view this appears to be reproduction of that incident).
I feel that these Autistic friendly conferences need to have the following:
Diverse leadership across the spectrum that has some democratic voting power in the direction of the organization. These conferences seem to be run by groups that are too small and not diverse enough.
Organization that includes roles like security, enforcement, conflict resolution.
A sensory sterile environment. It shouldn't need to be negotiated. It should be assumed that someone with the needs of Kassiane or greater will attend any Autism conference. There are others undoubtedly like Kassiane who are not represented properly in the Autistic community, probably because they feel it is not worth advocating for themselves in this Autistic space. Epilectics belong at neurodiversity related events, and the right to survive in the outside world in general.
I fear that the Autistic/Neurodiversity movement which you helped create is on the verge of marginalizing you out of it. This is morally atrocious.
To those who tone police this woman (who does seem to have a rather colorful repertoire of verbiage) Voices of dissent and of the minority and the marginalized have a right to exist and be safe. We would not be able to improve ourselves if no one complained or admonished. She has the right to tell that she has the right to be wherever she feels fit and to tell you not to tread on her.
Emily IS more than pretty decent. The touching person should have been, what? restrained because she does not have the ability to stop that compulsion? The person who was taking the pictures is VERY relevant. Just watch Wretches and Jabberers. Sandi was NEVER upstairs. I never threw coffee, I squeezed the cup and it spilled over me bc I, too, have PTSD. It was not outside Beth's room but in the elevator bank. Sensory sterile environments are impossible when celebrating the diversity of ALL because some do involuntarily vocalize loudly, some do run in front of people and accidentally crash because of visual challenges -- these have NOTHING to do with competence any more than having a seizure does. Seems to me that someone demanding so many accommodations ought to be a little more tolerant of accommodations and respect others needs for them. And, BTW, if the author had read the conference packet, she would know darn well who I am. As well as the fact that AutCom is supposed to be a safe place FOR ALL. Talk about fuckery. This post takes the cake.
I'm sorry this unbalanced woman keeps harassing you. Unbalanced woman, please go away. You only make yourself look worse.
comment addressed to the person with the name "The world does not revolve around Kassiane":
The touching person should have been told that other people have boundaries and you can't just go around touching people without their consent. That is a boundary violation, kind of like your commenting on Kassiane's blog, Facebook and PM's after you've been asked to stop. I have compulsions too, but my compulsions are not more important than other people's right to maintain their boundaries.
A flash could trigger a seizure and that could make someone die. So, you are saying that someone's need to take pictures with flash (which by all accounts, the individual who was taking pictures was apologetic and seemed to definitely understand this was not a matter of personal preference, but of life of death and safety and was very gracious about this situation as well) is more important than Kassiane's right to not have a seizure and die? You are treating an accommodation that LITERALLY can mean the difference between life and death as if it's just some little whim of Kassiane's because she dislikes flash photography. That's a load of dismissive bullshit.
Conflicting access needs....that's a thing. And sometimes, we have to live and work in spaces that will be too loud or too crowded for our individual needs, but we should not have to expect that spaces can kill us and it's no big deal. It IS a big deal and for you to minimize that is disgusting and reprehensible.
Also, I have PTSD too but that doesn't give me the right to assault people with hot beverages.
When was accidental crashing even mentioned in the post? When was "sensory sterile" as opposed to not flash photography and not purposeful touching without permission, mentioned?
No?
Yeah, that's what I thought. So that's kind of irrelevant to the issues brought up.
And if we're talking PTSD, let's talk trauma from being REPEATEDLY assaulted at conferences, including yours. Because that's a thing that happened.
We know who the heck you are Linda, and you need to STOP. VIOLATING. BOUNDARIES.
Get off Kassiane's blog.
Linda, wow, what a problematic comment and childish sign on name.
Have you seriously no clue that seizures can life-threatening? Go on. Look up SUDEP. Look up the stats on Autistic people and seizures/epilepsy. 30% ~ 1 in 3.
Since you're trying to throw them under the bus, perhaps you're unaware that the person with the camera apologized profusely and left their camera up in the room when they found out the issue. That person took responsibility, apologised, didn't do the thing again. They behaved exactly unlike you.
Possibly, since you say you have PTSD like it's an excuse, you've missed that most Autistic people also have PTSD. No it's not an acceptable reason to go throwing coffee at people or otherwise assaulting them.
From what I understand, Autcom is designed for Autistic people, not for rage-filled, prone to assaunting others, non-autistic people looking for "peace" and refusing to pull up their pants when their asses are showing for all to see.
Oh, The world Does Not Revolve Around Kassiane,I do wonder which clusterfucker of the event you are based on your words...but ah that doesn't matter. You are clearly a troll as you created your profile JUST to comment here. Careful darling, your lack of integrity is on display. By the way, I am going to have tons of little terms of endearment for you, since you seem to need extra attention like a squealing little child.
I love that you are talking about AutCom being a safe place for all, while at the same time bitching about Kassiane's demands for accomodation, and also suggesting that the only way to stop a person with a touching compulsion is to restrain them. You know working with the individual might help you out on some ideas that don't involve one thing that us autistic people find abusive and horrifying, but it seems many at the event don't actually care about the people they supposedly help. Not all, and I love Emily to pieces, but people like you my rotten little peach.
I must say blaming your PTSD for your behavior is completely original. I have PTSD too my dear Johnny Rotten-crotch, which, if it is PTSD making you squeeze coffee cups and somehow get hot coffee on people, you would be more inlcined to apologize than be on the defensive. Just remember, you are not a special snowflake when it comes to PTSD. Get over yourself.
When I go into PTSD mode, I apologize after I have snapped out of it if there is anyone I have hurt. Seems to me someone not willing to do that meant to hurt others. Come on now, tell the truth, you enjoy hurting other people don't you my lovely twatwaffle?
It seems when someone tells you that they could die upon exposure to something, you would work your little hiney off to make sure that exposure didn't happen, unless you were some kind of sadist with sociopathic tendancies. I mean, you wouldn't smear peanut butter all over someone with a severe peanut allergy, would you? Well, maybe you would. I shouldn't put anything past you at this point, since this is not the first time this has happened to Kassiane.
If you are in any leadership capacity with AutCom, which I can't know since you don't have the cahones to put your name in here, I would say your leadership is lacking to the extreme. As someone who tries to come on here like they are the big Kahuna, the fact that you don't understand that there is such a thing as conflicting needs and that ALL need to be accomodated is pretty sad. It's ok, I don't actually feel sad, you are just a sad excuse for a human being. Please don't misinterpret my meaning here.
Seems to me like being a troll while shitting on the demands someone has regarding their accomodation needs would be more tolerant of people not believing her pile of bullshit when it comes to any innocence in this matter. I would think this is especially true in a life or death situation, but I could be wrong. Someone who names themselves "The world does not revolve around Kassiane," when interjecting themselves into subjects of life and death when accomodations are not met seems just a bit childish and selfish to me. Maybe you should scurry back to the hole you came from, and let the adults discuss this important matter.
Yeah, if ya'll could stop trying to pass off blame for your fuckups to a mostly nonspeaking Autistic that would fanfuckingtastic.
So my comment on my own blog got eaten, that's always unique.
A) I did not name the photographer bc he clearly feels like shit, I imagine he feels pretty used given how aggressively AutCom representatives tossed him under the bus & denied his competence. In his shoes I'd be embarrassed and anxious and angry. I don't really want to add to that, nor do I really want anyone to take this as an opportunity to debate his competence or level of comprehension. He did what he could do to fix when apparently rules hadn't been made accessible to him. So, no, naming him is not necessary & possibly cruel.
B) Not being touched is a legitimate access need. You wanna know what PTSD does? Since apparently that is an accomodatable disability but epilepsy isn't? Surprise touch or unwanted touch is a major trigger for many people. If I don't see it coming I tend to grab arms & twist, because trained reflex. Avoiding being touched by surprise is how I make myself safe to be around. If someone has compulsions or automatic reflexes that are unsafe for others, then it's important to find ways to mitigate that (replace compulsions. Classes to turn the grab reflex from "wrap this person's arm around a pole" to "merely elbow lock them & no one is actually injured". Etc.). Conflicting access needs are A Thing.
C) you don't get to make ANY calls on access needs as reasonable or not, given that you think breaking promises to not endanger people's lives is unreasonable, and declared an autcom where you can't chase people around with a fucking flash "the worst autcom ever". Nice priorities there, Linda.
D) Do not tell lies. DO not gaslight. Especially not in my spaces. You are not welcome in all of them. I was cold to you even before you jumped on the flagrant asshole train for a reason, & that reason is you're terrible to me at every opportunity.
E) Fuck the hell off all my spaces. Are you going to show up at my real door instead of my virtual one next? That goes over about as well as surprise touch.
So, what the fuck, Linda? What about people with sensory issues who cannot tolerate being touched? What about people with PTSD? Do they have rights too? Or this this a case of "this person's needs, welp, she can't stop touching people so this trumps other peoples needs! OH WELL." For someone who claims it is supposed to be a safe place for all you're doing a shitty job of representing that.
Safe for all means safe for all. It does not mean safe for a chosen few. It does not mean safe unless you are photosensitive epileptic. It means safe for all.
Holy shit, I just found out about this from Finn. Can't conference organizers get a clue?! This is not rocket science: this is disability 101 stuff here. Flash photography is an extremely well known seizure trigger.
And what the hell were the organizers thinking when they:
a. didn't get it together to make sure no one was using flash photography at the conference in the first place; and then having failed to do that,
b. didn't immediately take steps to solve the problem?
There is no excuse for their fuck ups: a person's life and physical safety are the highest priority. That this needs to be said is astounding to me.
Given this is the second time this has happened to Kassiane at Autcom, and that this has happened at two other conferences, I'm beginning to thing conferences are unsafe at any speed. Conferences can't expect to have good presenters if they're going to repeatedly assault, abuse, and gaslight one of the best presenters in our community.
[Linda, if you're still reading the comments: I have PTSD too, and recently there was this situation where I couldn't help yelling at (and thus making feel unsafe) some Autistic friends of mine. I took responsibility: I removed myself from that situation. *That's* what you do if you genuinely can't help acting out because of your PTSD. You stop hanging out where you're likely to mistreat people because of it. You work on yourself. You take a break and start seeing a therapist and/or take up meditation. And you *say you're sorry*. You *don't* keep harassing people because of your wounded pride. You learn some humility. That's what you do. Even if it might mean never returning to volunteering with that or any other organization again.]
I am so sorry Kasssiane that you had to go through all of this. These whole series of events at conferences really suck.
When are these conferences and many people who are not autistic going to understand they need to accomodate and create accessible things for all of us. I am so sad that we live in a world that does not care about any of us who are Autistic. We still have a long way to go.
Re: PTSD and apologies
I have PTSD, and it not only makes me act in ways that are harmful to others - it can *also* make me unable to apologize for those things (because in my irrational fear-filled Emotion Mind, apologizing means giving that person power over me). Plus, I can't always remove myself from the situation when I'm in full flashback mode.
I wasn't at AutCom, I've never personally met any of you, but I just wanted to point out that not everyone with PTSD is able to apologize & remove from the situation when they're harming others. I'd like to be able to do those things, and I'm trying to get therapy to help me do those things, but I'm not there yet.
I'm so sorry to read about all of this. I know it's the least important detail, but it really nags at me that they played the "we paid your way here so you owe us a presentation" card.. I mean, they made a fundrazr and raised $1150 in donations specifically earmarked for you and Nico to go to AutCom and Nico ended up not being able to go, so basically they got $1150 to bring you to the conference. I'm gonna guess there was even money left over after paying for your airfare, unless you had one of the fanciest first class trips ever (then again I have no idea what all those donations covered, only that the campaign said we'd be paying for you guys to go)... but yeah my point is, THEY didn't pay your way. They used your name to raise donations from OTHER PEOPLE, and those other people paid your way. And I think all of us "other people" would've understood your choice not to present.
I know, a minor detail but just annoying to read about everything and then on top of it have them claim to have paid your way when really what they did was raise donations above and beyond the cost of your airfare which undoubtedly got absorbed into their organization, and only happened because they were able to use you guys' names. They made money off you then played it like they spent money on you instead, the way I see it. And that us uber crappy. IMO... if I got this wrong then of course I apologize profusely, I read a lot but never post so.. yeah.
sorry again this happened.
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