I got to be part of this panel on Autism + Representation organized by Vanderbilt University's Frist Center for Autism & Innovation.
My Responses
Introduction
I’m Hari. I used the He, Him pronouns. I'm a minimally speaking autistic. I was diagnosed at age 3 and my autism is very very visible which presents its own set of issues. At U C Berkeley, I’m a major in Psychology and minor in disability studies. Incidentally I notice my co-panelists have ADHD and I actually have that formal diagnosis too. The doctor pretty much gave me a dual diagnosis that time itself. I have so many things going on as well like oral motor apraxia, body schema, sensory regulation, social anxiety etc.
I’m currently visiting my grandpa in India so this is a new workspace for me with a big light just behind me. Hopefully you all can see me.
I am many things I think, scholar, writer, activist, philosopher, and poet. I’m a student journalist at the Daily Californian, research assistant at the Psychology labs and the UC Berkeley Disability lab which is this unique makerspace lab. This is my fifth semester as a student instructor for a semester long class on autism. I’m the first non speaking autistic president of Spectrum At Cal, which is the student campus org for autism. I am on the ASAN board, and Council of Autistic Advisors for Autism Society of America. I'm involved in a number of other parallel projects from academic to policy. And I do a lot of creative writing including maybe around 200 poems.
Why am I here today?
So i wrote this really long article for Alice Wong’s disability visibility project in Feb on this very topic which got a lot of coverage. So I have a strong feeling that’s why I am on this panel today. LOL
Examples of representation you have grown up with.
I think at the time of my diagnosis, my folks were asked if they had seen Rain Man to acquaint them with what autism even was. So I overheard about Rain Man a lot when I was young. Others I can think of outside of documentaries and in the fiction arena are Forrest Gump, What’s Eating Gilbert Grape, I am Sam, Big Bang Theory, Imitation Game, and the Good Doctor. Of late there has been Pixar’s loop, The Accountant etc. And I recently saw Pixar’s Float which while it does not say autism, so spoke to me.
To address what you said Claire earlier about some show characters not given a formal diagnosis is probably intentional as then the writers don’t have to feel like they are boxed into what the character is allowed to do.
On Representation
On representation, There are 2 parts to representation that Judy Heumann talks about in her white paper for the Ford Foundation. If you haven’t read it, I would highly recommend it. So it's both authentic representation and positive representation. So let's break that down.
Let's talk about the positive representation part first and I will give you four examples.
A classic example is that most stories with a non speaker almost always are about the non speaking autistic having a meltdown as that is sensational and provides lots of drama, trauma, and entertainment value. My question is surely there is more to the non speaking individual than a series of tantrums. This is the case in Sia’s movie too. There are multiple times where the character of Music has meltdowns and people even sit on her as that is how they get to control her. So what is the message being transmitted about non speaking autistics to the community? That they are some sort of wild beasts to be controlled, to be sat on.
The second of course is the use of restraints. When a movie gets a Golden Globe nomination, it is bound to get even wider viewership which means that the use of restraints gets normalized in the public psyche and in one swift move over turns decades of advocacy against the use of restraints. It is reminiscent of the residential Judge Rotenburg Center where GED devices, which deliver electric shocks, were routinely as aversives in behavior therapy. After decades of advocacy by organizations like ASAN, congress finally got on board to urge F Dee yay to finalize its rule on banning these electric shock devices. While the FDA did finally finalize its rule towards banning these specific electric shock devices last year, it does not preclude other forms of punishments, harsh aversives, or restraints by the JRC or any facility. Currently there is little accountability or reporting and it makes the news only when someone dies. So there is still much work to be done. Movies like Music are a major setback to such advocacy efforts.
The third is the fact that the 90 journalists who make up the Hollywood Foreign Press Association, the ones that get to nominate the Golden Globes, thought it was perfectly ok to nominate Sia’s movie. No one talks about this but if you think about it, they are partners in crime and need to be held accountable too. Their action in nominating this movie directly amplifies such negative messaging.
Another disturbing messaging I am finding in all the movies, is to send autistics away to a facility which in my mind translates to institutions. What I found most disturbing in the movie Rain Man was the ending where the implication was that he is better off at an institution than living in the community. In the good doctor, I think it was in season 2, there is an episode where the character of Dr Shaun Murphy tells the parent she needs to send her autistic son away and he would get used to it just as Shaun had as a foster child. That analogy did not even make sense and seemed rather cruel to advise parents to send their kids away. Sia too wants to keep sending Music off to a facility, finally puts her in a facility, then takes her back to show character growth on Sia’s part etc. Overall the messaging is that a majority of autistics need to be tucked out of sight of society and out of mind of society at the earliest possible time, unless they have learned to so camouflage and mask their autism, that they can pass muster and be allowed to live in society.
We talked about positive representation so far. Let's come to authentic representation. Again a couple of things to consider here. One of course is that one that has received the widest publicity of late which a disabled character in a movie plot be played by a person who actually has that disability, just as a White person can’t be an authentic representation of a Black person.
But if we dig deeper it also means that non-speaking characters, like in Sia’s movie, need to be played by non speaking autistic actors and not just by any autistic actor. Else that is not really an authentic representation for someone like me. Therein lies the challenge as there are not really enough non speaking autistics around. And why is that. We go back to all the tragedy of systemic discrimination and gatekeeping that is keeping them out of education and other opportunities and most are headed for facilities where they are out of sight and out of mind of society.
This is where positive representation again loops back in. Positive representation goes a long way to normalizing what is acceptable in society and can reduce stigma and gatekeeping. Then we will truly see both authentic and positive representations across the spectrum.
The future of Disability; will it get better?Yes it will get better and we have to work towards it.
We have to create more and more noise, consistently and frequently as public memory is very short and fickle.
You know I never used to hear about disability in India and this year. With all the free time during covid, I was watching their republic day parade this time. For the first time, they had a float for people with disabilities. So we have to keep chipping away.
And I want to quote the late John Lewis on this. "Do not get lost in a sea of despair. Be hopeful, be optimistic. Our struggle is not the struggle of a day, a week, a month, or a year, it is the struggle of a lifetime. Never, ever be afraid to make some noise and get in good trouble, necessary trouble."
