Neurodiversity

We Are the People Who …

One of the struggles autistic people have begun to join over the last decade or so is over who is to be allowed to define autism, and on what terms.  Is it to be defined from the outside, by those who do not identify as autistic?  By autistics themselves, as we generally assume any other people have a right to do?  Tied into this question is whether autism should be defined in reference to an absence of wholeness or health—by those who are possessed of their own self-defined wholeness and health, and who may not perceive those unlike them to be “a people.”  I’m already telegraphing my own bias, but if we are to take autistics to be a people, then we can look around and back in time to see how other peoples have negotiated what is surely a recurring challenge in human history.

That’s what I’d like to do here, at least with one example.

James Hillman tells the story of the reception given to a decades-ago archaeological discovery which lent unprecedented support to the stories told of the Maccabees, Jews who rebelled against efforts to eradicate their culture and religion (and whose victory has been celebrated ever since in the festival of Hanukkah).  The archaeologists’ finds were welcomed excitedly by Christian leaders, who viewed them as being of great significance because they represented confirming evidence for the truth of what to many had “only” been apocryphal stories.  In contrast, the excitement of Jewish leaders fell well short of that of their Christian counterparts.  What explained this in Hillman’s view was that the validity of Jewish cultural identity does not rest on any crucially literal facts such as a virgin birth or a resurrection—and that this in turn is reflected in the importance Jewish culture attaches to literal historical facts.

Even if, say, a Moses didn’t really part the Red Sea or receive the Ten Commandments direct from YHWH, those stories are not so central to the validity of Jewish identity as a literal and miraculous Jesus is central to Christianity’s legitimacy.  For all that devout or literal-minded Jews might believe in the stories of the Tanakh they are not in such a precarious position, in terms of their identity, as are believers in Jesus who have so much less reason to identify as Christians if Jesus was not really born of a virgin and risen from his tomb after three days.

Jews, in short,  know who they are regardless. They are “The People Who Wandered for Forty Years in the Desert,” even if they cannot document this with archaeological evidence, and even if it did not happen exactly as described in the Torah.  And, they’re okay with that—this approach has served them well, preventing much instability and insecurity from coming into their world with the rise of scientific thought.  Christians however, unless they are merely admirers of the teachings ascribed to Jesus, bet their identity on the fact that his birth and death as described in the Bible really happened.  For all that Christianity has historically been at odds with Science then, this is oddly enough where they find common ground: evidence-based reality matters deeply to both.  Hence the excitement of Christian leaders over any evidence that corroborates even non-miraculous stories from the Holy Land—let alone, say, the validity of the actual remains of Noah’s Ark.

We might say that while Christianity is based on facts (however unprovable), Judaism—or at least the identity of Jews as a people—is based on story.  Advantage Judaism, I suggest—for not having to be on pins and needles over every twist and turn in the archaeological or any other scientific record.  “Nothing” after all, as Edward Abbey pointed out, “could be more reckless than to base one’s moral philosophy on the latest pronouncements of science.”  Science of course progresses by reversing itself.  Open to self-correction as the scientific method is, to hitch one’s identity to what science says about you is simply to ask to be jerked around, each generation forced to stand and salute whatever passing truths support contemporary scientific theory.

Also crucial here is that Jews have been in charge of defining themselves all along.  Many more powerful forces have tried to define them as vermin and worse, but even when those perspectives were literalized into pogroms and death camps, Jewish people themselves have been remarkably successful at not internalizing definitions imposed on them from outside.  True, some do buy into outside opinion, but even they are arguably the exceptions who prove the rule in that they are set off from the rest of the population via the long-recognized cliché of “the self-hating Jew.”  While autistics have our counterpart specimens, we have yet to similarly set them apart with their own label; I suggest that when we do, it will be a sign that we are defining health and wholeness on our own terms.

Somewhere I have seen it eloquently expressed that story may be all there is, that the universe itself may be made of nothing but story.  I suggest at any rate that this is an insight which Jewish culture has grasped and put to good use, and that autistics have much to learn from their example.  All of our origin stories, for instance—our stories of how the various autisms came to be and got their names—are set in clinics, featuring doctors and diagnoses.  And then we wonder why we keep banging our heads against the Medical Model.

Multiple origin stories are allowed.  Even the Bible has two; this is what kept alive the story of Adam’s starter wife Lilith, whom I’ve suggested is autism’s founding matriarch—but there’s plenty of room for others back there in the misty reaches of time.  I’m sure there are multiple matriarchs, and patriarchs as well, other mythical and not-so-mythical ancestors to whose tribes we belong, if we only knew.  Re-member-ing those tribes should be our business.  There are historical ancestors and contemporary stories to be recognized, recovered, and returned to autism as well—if in fact “autistic” is the most apt term for us.  With aut-ism’s etymological roots planted into the notion of “self,” we are entitled to doubt this; it is in any case not a term we chose for ourselves.  I offer no specific suggestions, only that names can be spells, cast off as well as cast.  Just as we can have multiple origin stories, we may well have other, truer names besides autistic.

We are not the people who wandered the desert for forty years (though the intriguing argument has been made that for us it may have been more like forty-thousand years), however “We are the people who … ” is a sentence we need to learn how to finish for ourselves, and not with one answer but with many.  There is much that properly should be based “on the latest pronouncements of science,” foremost at least where autism is concerned being the efficacy of treatments, therapies, and “cures.”  But as much as I look forward to being informed by what light scientists can shed on autism, what science focuses on this decade or this century will not be what it chooses or is able to focus on in the next, or the next.  There’s no more need to allow our very identity to be dragged willy-nilly along whatever haphazard trail of shiny objects happens to catch the eyes of present or future scientists than there is for the identity of any other people to be dragged along at the end of any other leash.

To date of course, we are the people who have allowed exactly this to happen.  It is still within living memory that scientists were explaining us by way of our “refrigerator moms.”  Rather than putting science on probation for a century or three for that gem, still so many of us unquestioningly take the position—the recklessly precarious position—of looking to neuroscience and psychiatry to tell us who we are.

We are the people, I believe, who can do better than that.  We are made not of brain scans, test scores, and clinical evaluations, but of stories—and it’s time we started learning them.

Mark Stairwalt on 07/23/10 in Art/Play/Myth, featured | 8 Comments | Read More