The Coming of Neurodiversity (Part II in a series)
This whole project, and maybe even the motivation behind my coming to Petri Town in the first place, was in service of a question: If there is a cure for Fragile X, who would it turn The Boy into?
Questions of identity and the “I” are pretty salty ones, and whereas it was once the province of men in togas and the French, now the self can be subjected to neurological study — and modification, via genetics and medicines. So what happens if a Fragile X cure appears in the next few years affects all our selves. The Boy may become The Boy 2.0, and then, through the wireless signals of family, I too would have to upgrade my operating system.
These issues have circulated more widely in the last decade, in slightly different forms, in the autistic community. As has been discussed, the debate about whether vaccines cause autism was once just a discursive blob; it then split into two cells: those who believe vaccines cause autism and those who don’t. But there is a third faction whose existence begins to answer that first question of mine.
As higher functioning autistic and Asperger’s folks (autie and aspie in the parlance of our times) begin meeting online and appearing more in media coverage, so too does a name for this community arise, out of necessity or, more likely, our need to categorize. The first reference to Neurodiversity is in an Atlantic story in 1998 in which writer Harvey Blume suggests that “[n]eurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment? Cybernetics and computer culture, for example, may favor a somewhat autistic cast of mind.”
The media begins to like the taste of this; in June 2000, the question of How the Autistic Fit Into Society is broached by the New York Times. And slowly, slowly, as the autistic find one another online and recognize that they have a collective identity, they also realize that their identity is synonymous with disease. In order to change this, their Community will have to become a Movement.
Whether they know it or not, the time is coming when a Celebrity Spokesperson will have to be named.
Amanda Baggs’ first YouTube video in early 2007 brought this conversation to a wider audience. (Many of the ongoing discussions and arguments contained in the various comments sections of blogs and video postings from here on out are well worth looking into, though I warn you they will pull you into a world of opinions that, like anything else on the Internet, is best administered in small doses.)
Baggs is far more “autistic” than those erudite, if awkward, Asperger’s people in all those articles. Through her videos, she seems to represent the dark side of the disease, the imprisonment and isolation. But when she reveals her ability to communicate fluently through some rapid-fire typing, the media knows it has a rich vein of story potential. People are moved. And so Baggs is featured in a whole dang whirlwind series of CNN pieces, beginning in February 2007 with this story in which she’s kind of heralded as the autistic oracle, bridging the vocal world of Us and the mysterious, silent world of Them. In short, she very quickly became a celebrity.
A British news show catches up with Baggs in August of that year, at which point she’s already up and running on Second Life, the virtual world which, like most stuff on the Internet, occasionally finds room for a Movement amidst all the people looking for sex.
I first learned about Baggs and the neurodiversity thing after reading a Wired article in February 2008. I thought then of a kind of thesis: If a cure for Fragile X can be applied to autism, how many people in this newfound community will refuse the magic pill? It’s not a disease to be cured, they think, it’s an identity to be embraced. I’d guessed that there might be a community before I’d read about Baggs, but I had no idea, really.
My question was about The Boy; now it extended to a … what? A group? A community? If autism is, as Blume suggests, a bit of human biodiversity, would “curing” it be a poke in the eye of evolution?
But, gosh, these questions will have to wait their turn. First we have to deal with the pretty immediate controversy that bubbled up in the neurodiversity community (“ND” from here on out) over Baggs being sort of named unofficial mascot for the movement (because what’s a Movement without internal strife?).
Oh, and plus the accusations that Baggs is faking the whole thing.
Nov 16th, 2009 3:12am
