Who We Are

VisitorVille“Start Understanding Your Website Traffic In Ways You Never Imagined” is the pitch offered by VisitorVille, a service which provides website owners with a Sims-like representation of visitors to each of their site’s pages. Visitors who for instance find the site by way of a Google search are shown arriving on and stepping out of a brightly painted Google Bus, into a videogame-like building or city.  They can then be followed in real time as they browse from “room” to room, or “building” to building, each of which represents a page or section of the website.  Yes, especially as you are likely reading these words on a website at this very moment, you may feel a sudden urge to look over your shoulder, or peer up into the air vents to see who’s watching. Creepy, I know. Rest assured no code snippets from VisitorVille have taken up residence at Shift Journal, nor is anyone here paying the $6.95 monthly subscription fee that would allow access to its peephole cameras and one-way mirrors.  As for just who is tracking your every online move, I propose you take it up with a certain Mr. Schmidt.

Not that I’m looking to make anyone feel self-conscious; it’s just that there are a number of different potential perspectives represented among Shift readers, and it’s struck me that not everyone whose visits do show up in the site statistics is likely to be aware of everyone else who might be reading along with them.  I’d like to introduce you all to yourselves.

“Know your audience,” or “Know who you’re writing for,” is one of those English Comp 101 lessons I’ve come hard up against in writing at Shift.  At least before the site went up, I took my primary audience to be those who are new to whole issue of autism, those whose views about autism are unformed or not deeply held, and who might be stopping by here on their way to forming a deeply held view or two.  Most everyone of course has notions and associations having to do with autism, but by the same token most everyone has never been challenged to think very hard about them.

Writing for those who are looking to orient themselves after sighting the word autism on their horizon or bringing it home from their doctor’s office is still important to me; autism remains the largest, oldest secret society in the history of mankind, and orientation of newly identified members is a priority.  What’s also needed though for all of us is an overview, a rough working idea of how we are grouped in terms of identities—self-chosen, imposed by others, or yet to be recognized.  This is something that may be useful in many ways; the wide variety of identities that cluster around the word “autistic” is something I’ve become more aware of just from trying to keep them all in mind as potential readers.  One or two new ones come to light every couple weeks and before long, just using the word “we” in a sentence begins to feel like jogging on ice while juggling gluten-free muffins and chanting the drummer’s backup vocals from “That’s Not My Name.”

Just for starters, we have:

Old School pre-Rain Man autistics like my friend Rich Schull and his band of merry men, an international online group who’ve kept in touch for years, their shoulders to the wheel like everyone else, all while proudly disdainful of the “disability” label that they do very well without, thank you.

New School fighters for disability rights like Amanda Baggs at Ballastexistenz or Ari Ne’eman of ASAN and those who’ve lined up with them, embracing labels and claiming the right to define those labels themselves, underneath a banner that reads, “Nothing about us without us.”

Young autistic people coming of age and beginning to learn for themselves who is out here for them to identify with, perhaps while still under the roof of parents who may be in the thrall of an Autism Speaks, a Focus on the Family, or another group that sends the implicit message, “If we want your identity, we’ll give it to you.”

Those parents themselves, by turns confused, frightened, and exhausted, both by the unfamiliarity of autism and by the variety of directions they may be pulled in when seeking guidance on how to raise an autistic child.

That small but influential group made up of the professionals and volunteers who work with autistic people, and whose voices take on an authority that influences those who lack any other occasion to think very hard on autism.  This is a group, of course, which tends not to take its cues from uncredentialed bloggers—or from autistic people in general.

The incurious and not-very-autistic public, whose lack of curiosity about autism—rising in some cases to profound discomfort—actually does affect autistic people in millions of small and large ways every day, from federal legislation to common courtesies.

Those who, like economist Tyler Cowen, can wake up in the midst of lives that range from unremarkable to conspicuously successful to find they’ve been autistic all along, and who knew?  This group also has its members who are coming of age with autism nowhere on their radar screens, while ill-fitting identities are reflected back to them by families and communities who don’t see them accurately in the first place.  This population of unsuspecting or recently awakened autistic people of all ages is one I take to be huge, a sleeping giant, a majority over all others on the spectrum combined, and an important audience to reach—though how many have stopped by here is a question I expect even VisitorVille cannot answer.

I started thinking about all this when I noticed I was using “we” in different ways, sometimes in the same post, depending on who I was identifying with in any given paragraph.  Confusing maybe, but given that it’s a running theme of mine that autistic identities are not at all so separate and distinct as we’re led to believe, maybe not surprising.  I actually do identify with every group I just mentioned, and see plenty of overlap between them.  Any one person in fact might well belong to two or more such groups, whether named here or not, combining identities which might mix autistic and not-autistic perspectives at the same time.

Liminality is what social scientists call such a state of personal ambiguity, of being not-completely-this, and not-completely-that—at least when it’s not all so superficial as to amount to simply wearing two hats.  Some of us are comfortable with being permanently betwixt and between like this, and with being around others who have feet in two worlds—and some of us fight against such experiences with reflexive denial for our entire lives.  Autism in its many presentations makes for a lot of liminality.

So here we are.  However well or poorly our perspectives match up with those of others, knowing our way around begins with knowing what other identities and perspectives are out here, and how the territory around autism has been staked out.

on 12/11/09 in Autism, featured | No Comments | Read More

Leave a Reply