Thursday, April 30, 2015

Awareness Has Done Its Damage

Happy birthday, blog. This article was originally posted on the Autism Acceptance Month website, with appropriate trigger warnings for child abuse and murder. I also submitted it for the second edition of No Missing Pieces. The first paragraph is slightly tweaked because of the different contexts. What follows matches the No Missing Pieces version.

Every year, the Autistic community gathers to celebrate Autism Acceptance Month, while recognizing that we are describing the celebration by an unpopular name: Acceptance, not awareness. We understand this because awareness is not only history, but the present that we hope to change.

Awareness on its own is not a bad word. It's important to know about issues that affect the society around you, especially when you're among the affected. Knowledge is generally preferable to ignorance. Knowledge is also a component of acceptance.

The problem in the world of autism is that the popular model of an awareness campaign originates, and perpetuates, within a medical perception of autism. The parent and professional community has taken note of popular campaigns regarding breast cancer, HIV, smoking-related conditions and so forth, and simply copied those strategies, under the assumption that autism is correctly classified as a disease or disorder.

This sort of campaign typically focuses on the protections that prevent spreading the disease, medical treatments, and the ill effects that incentivize avoiding contagion. Of course, there are no precautionary measures against catching the autism virus, and no method for the equally absurd notion of a cure. Perhaps most obviously, autistic people do not suffer from autism.

So what is left to be made aware of? A comprehensive map of autistic behavior and experience? In practice, we've been far from successful at that. I was once told in a report from a certified psychologist that “no repetitive movements were observed” after watching me one-on-one for an hour, stimming continuously. I have been told that I “don't look autistic” or that you'd “never suspect” I was autistic while wearing a battery communication necklace, spinner ring, a chew toy, a noise-reducing hat, sunglasses, and flapping. Reassuring me that I'm not fully autistic is not an act of acceptance.

I contend that autism awareness accomplishes nothing more than repetition of the word autism. With that in mind, I must ask who has not already heard the word autism. Is there some Amish family in the mountains, living off of a tofu farm? Is that who we're raising awareness for? I jest. I know that the real beneficiaries of autism awareness are the various corporations with “autism” in their names.

When awareness continues to be promoted after we've already learned the word, the nature of the message usually transforms into one of burden and tragedy. We need to keep bombarding you with these messages until you're adequately scared of this horrible affliction! Even my friends and family can think of me as less of a person because of an identity that constitutes the entirety of my being. It is not difficult to imagine how that would be harmful to someone's relationships, opportunities, and self-esteem. Awareness is the cause of this harm, not the antidote.

When Daniel Leubner's mother burned him alive, she was aware that Daniel was autistic. When Kyle Dutter's father shot him, he was aware that Kyle was autistic. When Scarlett Chen's mother drowned her, she was aware that Scarlett was autistic. When Katie McCarron's mother suffocated her, she was aware that Katie was autistic. When Marcus Fiesel's parents suffocated him, they were aware that Marcus was autistic. When Glen Freaney's mother strangled him, she was aware that Glen was autistic. When Daniel Corby's mother drowned him, she was aware that Daniel was autistic. When Melissa Stoddard's parents suffocated her, they were aware that Melissa was autistic. When Randle Barrow's mother drowned him, she was aware that Randle was autistic. When London McCabe's mother threw him off a bridge, she was aware that London was autistic. If the length of this list bores you, let me remind you that those people no longer have the luxury of being bored. Their lives were lost because the people who were supposed to ensure their safety were instead afraid. How many times does a parent have to murder their child before we realize that the problem isn't that we just haven't raised awareness enough?

Acceptance is not just a positive attitude. It is a necessity. It is a matter of urgency. We the Autistic understand this, and we will not be safe until you understand as well.

Disabled lives (some autistic) lost to awareness

Sunday, April 19, 2015

Points In Space

This is my first time writing a poem (unless you count haiku), and it has a bit of an odd history: In my college choreography class, one of our individual assignments was to select a title from a list, then create movement based on the title. I overheard another student asking if we were allowed to use music for this assignment, and the teacher responded "no, but you can do spoken word" which inspired me to create a poem to accompany my dance. The titles provided in class were all from famous dances, so Points In Space shares its name with a dance by Merce Cunningham. I may post videos in the future, as Points In Space was always intended to be performed, not just read as text.

I was born into a culture that was not my own
  the rituals make no sense to me
  my brother hates that I am different
  and even my parents are not really my kin
I am a single point in space

For fifteen years I wondered who I was
  I tried to ask but my voice could not carry
  a silence for which no alternative was offered
In this way they told me my culture was empty
  I tried to read but the sensation of a story in my own tongue was always out of reach
  I might as well try to feel the sky as if it were braille
In this way they told me I am a sad little star
  shining alone in ultraviolet so no one can see me

I refused to believe this, and indeed I discovered the telescope
  but upon seeing the galaxy no later did I learn
  that the other stars are quadrillions of miles away
I shine with stubborn hope that my light will reach the others
  but how do I know they are even watching?
They are just points in space to me
  I know nothing more

I have grown to despise the space
  emptiness is my jail cell
  the other stars in other cells
  and the distance between us the bars
In truth I am no star
  I am a human being on a rock
  but just as the distance shrinks so does my jail cell
I curse the rock beneath me
  for it is the space that divides me from my culture
  from myself

And then, acceptance

This telescope that showed me the galaxy
  this screen that told me about myself
  it is not a jail bar
  it is the key to the cell
The stars and I may be at different points in space
  but we are already one because I am seeing their light
  that IS my culture

I do not ring the door bell when I come home
I press the power button.

Reading the poem at Autism HWY annual chalk festival, April 18, 2015.