Please read Kassiane’s full account of the unfortunate events which occurred at the Autcom conference in Manchester, NH.
My very dear friend Kassiane, like my daughter Evie and best friend Sharon daVanport, have photosensitive epilepsy. Being a photosensitive epileptic means that flashing and/or strobing can trigger a seizure. Seizures can and do kill people.
Prior to attending the Autcom conference, Kassiane expressed concern that Autcom had not done its due diligence in safeguarding Kassiane and other photosensitive epileptics from the potentially life threatening effects of these very real seizure triggers–although they’d quite literally had years to do so following a past Autcom event where Kassiane was subjected to a board member willfully following her around using flash photography. I exchanged several emails with Autcom board members in effort to assure no more malfeasance.
Exactly zero of these precautions were executed. This resulted in one of the attendants not being aware of the potential dangers of using his flash and doing so in the presence of Kassiane.
I woke up on Saturday morning to hear several conversations regarding what had transpired the day before outside of my hotel room door. These conversations were between Emily Titon, the Autistic president of Autcom, and several board members and/or folks who are involved with the leadership and planning of the Autcom conference. What I heard was disturbing in a few different ways.
Emily was advocating firmly to honor the promises Autcom made to Kassiane–expelling anyone who broke the rule. In return, the non-Autistic board members spoke to her as if she is a child–using “special voice” to splain why Autcom could not. The reasons included that the use of flash photography was not “egregious” and that the person who used it was a popular presenter. One Autcom board member disclosed, what I can only assume is confidential medical information, about the individual who used flash photography as an excuse for why that person needed to use his camera and indicated that he was not capable of understanding that the use of flash is dangerous–loud enough for me to hear it clearly through my hotel room wall. Further, there were threats from the non-Autistic board members–that if the rule was enforced, they would leave the board.
I went upstairs to Kassiane and Alyssa’s room to let them know what I’d heard. I suggested that we not present because I felt like Autcom was handling Kassiane’s accommodation needs with such disregard that there was a real chance that it would happen again. Understandably, Kassiane did not feel that she should need to leave the space–that the onus was on Autcom to make the space safe for her and other participants. I made my way back down towards my hotel room where I met Emily Titon near the elevator.
While speaking to Emily, a former board member and person involved in the leadership and planning of this conference approached Emily and began to berate Emily over her position–I don’t remember, specifically, what she said. Just that her tone was condescending and disrespectful and prompted me to engage in the following exchange (to the best of my recollection).
Beth: Don’t speak to Emily like that.
Autcom Person: I’m being sarcastic.
Autcom Person: No, I’m bipolar.
Beth: Me too. But are you Autistic?
Autcom Person: No, my son is.
Beth: You don’t get to tell Autistic people how to run their community. You don’t get to be disrespectful to Emily.
Autcom Person: You need to treat me with respect.
Beth: You need to earn respect.
Autcom Person: What about ___’s (individual using the camera) needs? He needs to use his camera. It’s important to him.
Beth: You can’t honestly be comparing a person’s need to use his camera to someone’s life or death accommodation need.
The Autcom person said something about a rage attack and that she comes to Autcom for peace–that this was the worst Autcom ever. I said if she was threatening to rage attack me that she needed to walk away. At this point, she threw her coffee in my direction–it didn’t hit me. Emily and I went to my room where Emily received a call from Kassiane asking us to come down to the registration table.
When we arrived, Kassiane and several of her support people were engaged in a heated dispute with a couple of Autcom board members. During the dispute, Kassiane was told that she she should ask the camera flashing participant to “please not use flash.” I was also told by a board member that there was “not enough time” to execute the steps that I outlined in my email above. It was clear that Autcom had no intention of doing its job as hosts of the conference. I asked Kassiane if it would be okay if I spoke to the person that had used the flash. She agreed.
I found the support person of the person that had used flash and was told that the person was very sorry and that he had put his camera away for the day. Please note, that I spoke to the support person ONLY because the actual person was not there and ONLY in the interest of expediency–we were scheduled to speak in less than an hour. I do not, in any way believe that this person is not capable of speaking for himself. The support person indicated that the person who had used flash was more than willing to apologize and make sure Kassiane understood that he would not do it again.
Shortly after, the person approached Kassiane and set her mind at ease. Kassiane graciously accepted his apology.
The events which occurred at Autcom highlight many of the problems in the Autism community. We talk about the presumption of confidence, often, in an abstract and idealistic way. But we need to do much more than talk about it. We need to do it. What does that look like in practice? It looks like those of us who are not Autistic stepping back and acknowledging Autistic people as the rightful leaders of their community. It looks like those of us who are not Autistic understanding that our roles in the community are support roles. We don’t set the agenda. We support and amplify the messages that Autistic people communicate.
When we presume competence, we know that Autistic people are capable of advocating for their own needs. “Don’t use flash photography. It could kill me.” We honor those needs without question because we presume competence.
We don’t speak to Autistic adults like they are naughty children. We don’t dismiss the content of their messages because they are angry or because they use language with which we are not comfortable. When we are called onto the carpet for messing up, we don’t react defensively. We don’t make excuses. We apologize sincerely or we don’t apologize at all. Our sincere apologies are always accompanied by a genuine desire not to repeat the same mistakes–which means we gather the information necessary to make sure that we don’t continue to make the same mistakes.
We don’t ask Autistic people to be patient while we excuse ourselves from wrong doing. We accept that we are deserving of criticism. We don’t make it about our hurt feelings. When we are so caught up in our own defensiveness, we fail to learn from our mistakes. And we all but guarantee that we will make the same mistakes again.
It would be like planting poison ivy as landscaping.