At roughly 7:00 AM yesterday, I was standing in an upper floor hallway of the Radisson Hotel in Manchester, New Hampshire with Autcom President Emily Titon and my new friend Ivan. We were at the Autism National Committee’s 25th Anniversary Conference, and Emily and Ivan were trying to get in touch with the other board members while I tagged along. The previous day, one of the attendees had used a flash camera in the presence of well-known Autistic activist Kassiane Sibley (who writes the blog Radical Neurodivergence Speaking – you should read it). Like 30% of the Autistic population, Kassiane is also epileptic, and for this reason, flash photography was to be strictly prohibited at the event. This was the first point on the rule sheet, and was also brought up during the opening remarks. Apparently the person who used a flash had not been able to attend the opening announcements, and had not received his information package. Emily and Ivan both supported the removal of this person from the event, which was the repercussion decided upon for the breaking of this rule. The other (mostly Allistic) members of the board demanded a meeting. After I left Emily and Ivan to get breakfast, they met and apparently things got ugly (more on that later).
This was not Kassiane’s first time attending Autcom. She had presented at the event in 2008, and at that time a board member had harassed her with a flash, and the caretaker of a co-presenter had refused to alter a slide show that featured strobing imagery. This caretaker had instead suggested that she decide not to have a seizure. (That’s not how epilepsy works, in case you didn’t know.) Many promises had been made about the fact that things would be different this time. Because of these past events, Kassiane made it very clear that any incidents would be treated as attacks and not mistakes. When I exited the ballroom after finishing breakfast, I found Kassiane and a number of other people engaged in heated conversation with several Autcom board members and volunteers. From across the room I could hear Linda Rammler, a volunteer and keynote speaker, loudly proclaiming that she comes to Autcom for peace and this was not peaceful (Oh, no! People attending the human rights conference are demanding to have their human rights respected!).
She stormed off shortly thereafter, and Autcom board member and former president Sandi McClellan stepped in to take up the slack. Sandi said a lot of god awful things and it’s really all a blur. Some of the highlights included telling Kassiane that she wasn’t being rational, repeatedly using a shortened version of her name that she does not like, telling her that she didn’t belong at Autcom and tone policing her (the word fuck was too “uncomfortable”). She also implied that if Kassiane left at that point they would not cover her plane fare home, because they had brought her there to present. Other board members and volunteers chimed in to suggest that Kassiane essentially beg the photographer to not do it again. I asked them why they couldn’t enforce their own (uncomfortable language) rules.
Among the most disturbing things said by these board members was the implication that the mostly nonspeaking photographer was incapable of understanding what he had done, because he was mostly nonspeaking and had been in institutions for part of his life. This is disturbing for a number of reasons. It is infantilizing as fuck, and it is particularly awful because AutCom is known for doing a great deal of work with nonspeaking Autistics and is supposed to be committed to the idea of presuming competence. A number of the board members we were arguing with were actually wearing “presume competence” shirts, and yet they presumed incompetence in the case of the photographer, and tried to use this as an excuse to not take responsibility for their fuckups. Incidentally, when the photographer came downstairs he immediately apologized and agreed to leave his camera (which means a great deal to him) upstairs for the remainder of the event.
Emily Titon was not present for most of this incident. She came down when called on, but was promptly pulled away by another board member because someone wanted to meet her. As mentioned above, when the board members met earlier, things got ugly. Linda Rammler actually threw a full cup of coffee at someone, and several other members apparently threatened to quit if the rules were enforced. Later that day, at a panel about racism and the Autistic Rights Movement, featuring Lydia Brown, Kassiane, Finn Gardiner, and Morenike Onaiwu, Sandi asked a bizarrely racist question that had already been answered by the presentation itself. Perhaps she was trying to illustrate the way the Autistic Rights Movement is geared primarily toward white people, but I somehow doubt it. Linda Rammler has also continued to harass Kassiane through Facebook. Kassiane has almost died because of seizures in the past. Her access needs are not fucking negotiable, and when standing at the bottom of a deep hole, it’s best to stop digging.