On Feb. 10, the Eliot-Pearson Department of Child Study and Human Development hosted a screening of the documentary “Life, Animated” (2016), about an autistic person named Owen Suskind with a special interest in Disney characters. The Coalition for Autism Support at Tufts (CAST), of which we are officers, agreed to co-sponsor this event. However, after having participated, we were extremely disappointed by the way it was managed. The event pushed autistic perspectives as far into the margin as possible, which is antithetical to the values of our club.
CAST is a club primarily run by and for autistic Tufts students. We host weekly discussions for autistic students and neurotypical allies, along with larger events aimed at increasing autism acceptance on campus. Given that part of our mission is to empower the autistic voice, we were hoping that this event would be another opportunity to have our message heard. Instead, it was an opportunity for neurotypical people to pat each other on the back and tell the story of our lives without our input. Having attended the event and participated in the co-sponsorship process as CAST’s discussion coordinator, I would like to tell the story of this event from my autistic perspective and describe what went wrong, in hopes that readers will be able to learn from this debacle.
When Senior Lecturer Julie Dobrow first emailed us on behalf of Eliot-Pearson, she described the “panel of autism experts and activists” that they were planning to assemble and asked us for co-sponsorship. After we agreed, we heard nothing until a month and a half later, when there was a mass email to all co-sponsors, listing the members of a fully-formed panel that was appallingly lacking in the aforementioned ‘activists.’ The panelists were Owen Suskind’s father Ron, who wrote the book on which the film is based, and three academic or medical professionals: Eliot-Pearson Associate Professor Calvin “Chip” Gidney, Associate Professor of Social and Behavioral Sciences at the Harvard School of Public Health Michael Rich and Boston Medical Center’s Autism Resource Program Coordinator Lauren Bartolotti (G ’12). Not a single panel member was autistic.
We emailed back, asking for autistic people from our club to be included on the panel. Professor Dobrow replied that the department would love to have “a speaker” from CAST included. One autistic speaker to serve as the sole representative of all autistic people. One autistic speaker on a panel of five. Did we get what we wanted? Could we really justify asking for more?
We picked Justin Robbins, our club president and our most experienced speaker. Professor Dobrow’s plan for the panel was to pose questions to panelists herself, then open up to questions from the audience. She asked Ron Suskind two questions, each other neurotypical person one and Justin none. She took two questions from the audience, the second of which was mine. Other than my question, Justin was never given the opportunity to speak. In addition, after anyone else was done speaking, Ron Suskind would jump in and talk uninterrupted for a long time, as though he automatically had the floor. Thus, Ron got the vast majority of the speaking time, whereas Justin barely got a word in. Here is Justin’s description of how he felt at the event and how he chose to respond:
“When you’re autistic, there’s one thing you’re never taught in social skills classes: what to do when someone else messes up. That’s how I felt at the ‘Life, Animated’ screening. When I was passed over by the moderator, I knew something was wrong. Listening to the simple questions, my own sidelining and Ron Suskind’s near-continuous talking and interrupting, I realized what the entire event was: a self-congratulating publicity opportunity for Mr. Suskind.
I was miserable. I was anxious. I was panicking. How are you supposed to navigate that social situation? How are you supposed to raise your voice when the expected behavior screams silence? I had to interrupt, every chance I got. I had to pick out the millisecond-long lulls in monologue and jump in perfectly, passing it all off as casual and affable. I had to do this every chance I got.
I wrote to Professor Dobrow, explaining my concerns. She responded by claiming she did ask me a question. I asked multiple people in attendance about this, and none of us recall her alleged question. I was led to question my own memory of events I witnessed based on the false statements of Professor Dobrow. This is gaslighting.
My name is Justin Robbins. I am the co-founder and president of the Coalition for Autism Support at Tufts. I am an autistic advocate. I am not your diversity token. I am not your bauble. I am not an object to be exploited so that you can feel better about yourself. I sat down at that panel ready for a nuanced discussion of the film’s strengths, weaknesses and implications. Instead, I got a deluge of ableism. I am disappointed, but I am not defeated. We will not allow that hypocritical and prejudiced behavior to silence us. We have been through far too much to let that happen.”
It should be obvious that Justin was treated extremely rudely before, during and after the event. I now want to explore the ways in which, as Justin mentioned, ableism factored into this situation. Justin’s mistreatment bears a great deal of similarity to the ways that autistic people have been mistreated countless times.
With “Life, Animated,” Mr. Suskind cements himself in the grand tradition of neurotypical people profiting off autistic experiences. From “Rain Man” (1988) to “Extremely Loud and Incredibly Close” (2011), this tradition stretches back as far as psychiatric recognition of autism. The authors in this tradition have been accepted in our culture as more worthy to portray, in intimate detail, the thoughts and feelings of their autistic protagonists. Their voices are amplified over those of autistic people, despite these authors’ at times reckless disregard for the authenticity of their descriptions.
Thus the necessity of having autistic people on the panel. We asked for autistic representation, because we saw that a film about an autistic person would be presented by neurotypical people to other neurotypical people, and we could not in good conscience allow that to happen in a public forum without a member of our community there to provide critical analysis.
Why a member of our community? Because we autistic self-advocates are the foremost experts on portrayals of autism in the media. We know what it is like to be autistic because we are autistic. We know which types of portrayals of autistic people are empowering and which are damaging, because we directly face the consequences of the ways in which the media chooses to portray us. No one else, not even a Pulitzer Prize winner, can claim to be better qualified to make judgment calls about those topics than autistic people themselves.
However, the experience of being denied a voice by neurotypical people who think they are qualified to speak for us is all too common. People with degrees or professional experience tend to think that because they wrote, or at least read, the book on autism, they don’t have to consider first-person perspectives. Parents of autistic people tend to assert that because they know their children so well, they should be able to speak on their children’s behalf with just as much authority. The public subscribes to both of these beliefs, but they are misguided. A parent can love, understand and listen to their child, but they are not their child. No matter how much they ‘get it,’ they will never be more qualified to talk about autism than an autistic person, and they should recognize that in their thoughts and actions.
Ron did not do this. It was clear from his conduct at the screening that he supposed himself to be the automatic and default center of attention and did not consider the autistic person five feet away from him to be anything but a prop to further elevate himself, his work and his organization, Sidekicks. After Justin spoke, Ron would say, “I love this guy!” or he would wax inspirational about the incredible resilience of autistic people in their eternal struggle to communicate. Everything he said was presumptuous or condescending. I hope Ron will forgive me if I don’t find it particularly inspiring how Owen, Justin and I are forced by society, on pain of eternal loneliness, to develop strategies for communicating with others. As I sat in the audience watching a parent’s voice prioritized over an autistic person’s, I couldn’t help but feel that it was symbolic of the way autistic people are treated in the wider world.
When Professor Dobrow came up to Justin and thanked him after the panel ended, I wondered: What was she thanking him for? Given how she treated him, it certainly couldn’t be that she actually wanted to hear him speak. If Justin was not at the event to speak or to be asked his opinion, then why was he there? Was he there as a prop for Eliot-Pearson so that the department could appear politically correct? Was he there as a prop for Ron Suskind so that he could self-promote and advertise his company? Was Professor Dobrow thanking Justin for allowing himself to be used?
To truly amend this situation will require more than just words. An apology might make Justin and I feel slightly better, but it wouldn’t do anything for the people who sat with me in the ASEAN Auditorium that afternoon, and it certainly wouldn’t do anything for the multitude of autistic people who have experiences like ours. A promise not to make the same mistake next time wouldn’t help either, since I expect that CAST will be wary about collaborating with academic departments from now on. If you are reading this op-ed as a member of the department and feel directly or indirectly responsible for what happened, here are ways you can show it: Read about ableism and how it pervades academia. Read about the intersections of ableism with other identities. Identify the ways that the organizations you work for or run perpetuate ableism and do your part to end it. Impress upon your colleagues and students the importance of listening to autistic voices. Advocate against autism ‘treatments’ that are really abuse and against autism ‘charities’ that are really hate groups. Do all these things even when you’re not facing a challenge to your reputation or an attack on your character; do them more than you need to. Then, maybe we’ll believe you when you say you have our interests at heart. As it stands, though, we’re sick of being silenced, and we won’t be coming back for a second helping any time soon.