Thursday, July 3, 2014

Letter to Sesame

This essay is written by Sarah Akin. She can be found on twitter at @crythecrawling.

I know what you've been told:
We're just a fringe group of Aspies who don't think autism is a disability.
We're too "black and white" in our thinking to separate the affliction from the individual.
We don't know suffering and are wholly incapable of empathizing it.
Maybe you've heard that we're angry "loners."
Maybe you've heard that we're not Autistic at all.

Well, if that's what think, you haven't been listening. Not to us. You haven't heard a word. You put up your defenses the minute we challenged your preconceived notions.

Put down you defenses for a moment. It's alright. This information needn't alter your sense of self. But your perception of me needs altering. And that's something a compassionate person would want to know. Sesame promotes compassion. Put down the defenses that hinder it.

I'm Autistic. I'm speaking. This is what I have to say.

Yes, I do consider myself disabled. I have social deficits. I get lost easily. I have great difficulty multi-tasking. I have little sense of time or chronology. I'm unable to drive. And, like all Autistics, I sometimes get overstimulated to the point of shutting down completely. Neuro-psychological testing confirms all this. And I have a lifetime of experiences to confirm that I'm "odd." In the language of diagnostics, I have a marked, noticeable learning disability.

But diagnostics doesn't define me. And diagnostics doesn't define autism, either.

You see, that's the thing about language. Someone creates a diagnostic category and suddenly we're all thinking in absolutes. And I don't just mean the myth of high/low functioning. I mean that, quite suddenly, this profile arbitrarily determined by humans becomes, through language, a solid entity in our collective consciousness — one to be isolated, dissected, extracted. To put it another way, diagnostics is very black and white. Those of us on the Autistic spectrum tend to take a more nuanced view.

Hans Asperger said, "For success in science and art, a dash of autism is essential." Singular thought and singular determination, passion, focus, attention to detail, experiencing every moment in full technicolor, asking questions, seeking answers, and meeting challenges with care and an enduring childlike whimsey. That, too, is Autism. That's also Sesame Street. Along with the rest of my generation, I grew up on your street. I loved, and still love, its residents. I loved, and still love, Jim Henson and all that he stands for. Preserve that legacy. Preserve the fragile spark that exists in every child, including the child that was me.

As for suffering, well...
Yes, I've suffered. I've been called "stupid," "creepy," "stubborn," "naive," "embarrassing," "antisocial." I've been exploited…and then blamed for my own exploitation. I've been forced to suppress the self-stimulating/self-soothing behaviors that enable me to function. I've been taught to disregard my own boundaries and my own experience as irrelevant. My spark was smothered. And from the first moment I encountered Autism Speaks, I understood — without being told, without knowing others felt the very same way — that harm was being done to me and to my community.

But let's really talk about suffering.
Let's talk about punitive electric shocks. Let's talk about seclusion, restraint, food deprivation. Let's talk about people exploited/degraded on film with not a thought to consent or human dignity. Let's talk about a mother detailing thoughts of murdering her Autistic daughter, right in front of her daughter, and explicitly stating that her other child is the reason she didn't go through with it. Let's talk about children blamed for divorce, debt, and any/all emotional instability exhibited by adult caretakers. Let's talk about violence written off to "lack of services" while putting only about 3% of funds into said services (and 10x that into salaries). Let's talk about the systematic dehumanization that makes all this possible — because children have, in fact, been described as "missing," "kidnapped," "soulless."

This is what you get when you partner with Autism Speaks. This is why Autism Speaks lobbied against expanding the role of self-advocates.

They never apologize. They never listen. They control the narrative, distort what is plain — and deny, deny, deny.

These are not the values you claim to represent.

1 comment:

  1. Thank you for this. I'm not sure that I'm autistic exactly, but I'm not neurotypical. It took me a longtime to recognize my kinship with autistic people precisely because the way autism was described to me, over and over, made it sound as though they aren't really people. And I, too, have been dehumanized by experts.

    You mention the concept of "separating the disability from the person." My thought on that is why are we even supposed to? Why are we supposed to say someone "is" a genius but "has" autism? Why are we only allowed to claim those aspects of ourselves that are convenient to others?