Friday, July 16, 2010

"Fully Funtional"

Leah Jane is an Über-liberal, nerdy, feminist, American-Canadian, secular humanist, skeptical, pansexual, overeducated, intellectual, philosophical, artistically inclined, white-tea drinking, loudmouthed, agnostic, politically correct, mordant, autistic Jewess who likes to draw, write poetry, study languages and smell flowers. She runs her blog, The Quixotic Autistic as a way to cope with a world that seems to want nothing more than for her to speak, but tells her to be quiet and let the neurotypicals talk when she tries to. 

Up until a few months ago, I used to define myself as either having Aspergers or being a "high functioning autistic". I was not familiar with any other terminology, apart from occasionally using ASD (Autism Spectrum Disorder) to explain the exact nature of my disability.
Looking back on that now, I shudder in embarrassment at my own arrogance and obliviousness to how I was reinforcing ableist, divisive thinking about people with autism, my own community! After some help from a friend who works in disability advocacy though, I started thinking more carefully about the language of "high functioning" versus "low functioning", and matching them up against my own experiences with what I thought neurotypical people associated the phrases with. When I visualized "high functioning", I recalled all the beaming praise people had for those suspected to have autism in the past, like Isaac Newton, Albert Einstein, and Glenn Gould. It was associated with creativity, eccentricity, intelligence, and ability... It was as though the word "disability" had been stripped away, because clearly, someone this smart is not in need of any assistance or acceptance.  Low functioning, I realized, conjured up images of the qualities of autism that are often emphasized within the "curebie" movement: Pity for the child whose sensory overload prevents human contact, the nonverbal one who is assumed to be worthless because she does not communicate in an acceptable fashion, the one allegedly stolen from his parents that is described as an empty shell or husk. It did not carry the positive associations that "high functioning" brought to mind. I thought about other words used derisively towards non-neurotypical people: Retarded. Slow-witted. Imbecile. Invalid. Low-functioning fit in perfectly with the lot of them, as a tool for othering people on the spectrum and turning them into extensions of the feelings of neurotypicals, burdens to be handled by saintly parents, curiosities serving the purpose of teaching a Very Important Lesson to neurotypical teachers, classmates, and community. Not human beings, as they rightfully should be thought of as. Just nice ideas to be used as political or social pawns when convenient, and then negated to the background when the time came to talk about autism's positive qualities and potential. 
That was what made my brain spiral into regret and horror. I was reinforcing the idea that intelligence equalled a person's worth to the world, that people with autism who could not possibly build rockets or cure HIV were not as valuable as the oft-touted supergeniuses used to justify our existence and given as the reason autism should not be cured. 
I am trying now to correct my language, and I have started referring to myself and my fellows with autism as "person(s) on the spectrum", to avoid the unfortunate connotations of high versus low functioning, and, most important of all, place the emphasis on the word "person". Often, in the struggle to find a balance between seeing us all as nearly inhumanly ingenious creatures who can learn Icelandic in a fortnight, count cards better than a computer, or discover relativity, versus being symbols of loss and sadness "locked in our own worlds", we sometimes forget that regardless of level of abilities, we all remain human beings. That is the only justification we should require for being treated with honour and respect to our autonomy and independence.
 I cannot speak for other persons on the spectrum. But I know that I want all of us who fall under the umbrella of autism's definition to have dignity and personhood. If we are separated into grades of high and low-functions, like machines or raw ingredients for a cake, we'll never achieve our goals of being seen as people, not puzzles. 
The next time you catch yourself using "high functioning" to describe someone verbal and articulate with any disability, or low functioning for someone who may not have mastered the tasks neurotypicals take for granted, stop and think about what you are saying. You are assigning an arbitrary value to human beings based on something as arbitrary as IQ or verbal ability. Do not think of our functioning in terms of how well we talk or how good we are at feigning eye contact. In an environment where we are all welcomed, accepted, and loved as we are, not for what we contribute to the intelligentsia, then we may all end up being called high functioning, because in that type of environment, we will all thrive. Measure us not by our intelligence, but by how well our environment is realizing our needs and desires and making an effort to include us all.