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.

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

Comments (8)


  1. Mark Stairwalt says:

    H/t to Lili Marlene at Incorrect Pleasures, where the tagline currently reads, “Peter Mark Roget was the (autistic) ‘man who made lists.’ Lili Marlene is the (autistic) woman who makes lists.”

  2. Lili Marlene says:

    We are the people who bought the latest technology to your doorstep? I can say on both sides of my family there were fathers who sold or installed or did skilled technical work on new technologies that are now accepted parts of our modern lifestyle. There’s also in our family a female ancestor who worked with a manually-operated precursor of the electronic computer. Techies make the world go around! My parents met through what was a novel technological form of communication. This is the result.

  3. Mark Stairwalt says:

    I’ve written here and there that tech is where I expect autism to first become a mainstream, non-pathologized reality. I think tech people are by and large already aware of their connection to autism, but have yet to decide whether and how to claim it openly. That decision may not come for decades, or it may begin to come next month. As much as geeks and nerds have been functioning as autism’s proxy warriors, I think it’s also likely that “the autism wars” for and against the concept of neurodiversity are being watched out of the corners of the tech community’s eyes. There may not be much movement on their part until some of the smoke clears from the battles being fought by those who already identify as autistic.

    But yes, absolutely, I agree. The whole reason computers for instance are “hard” for the general population is that they were conceived from the ground up not by what is now the typical end user, but by people who love and understand “systems” — by, in a word, the minds of a certain type of autistic people. It’s autistic people who have given the entire world these godlike powers of being in many places at once, of transcending time and place altogether — and this is part of the reason I’m looking to tech to see autism come out of the closet.

  4. Lili Marlene says:

    My optimism is tempered by my knowledge that technically-minded people can have no apparent interest in becoming involved with the more people-intensive areas of life, such as activism and psychology, even people who might privately admit that they are on the spectrum. And male autists always have the option of hiding behind male stereotypes (men are inarticulate, men like to play with big boy’s toys, boys develop later, men often don’t have close friends ….). I think this is why I do what I do. In the world of women I always feel like a complete outsider. Finding a comfortable niche has never been easy for me. I do like to whinge.

  5. Mark Stairwalt says:

    Agreed, but at some point I think the prevalence of autism among tech folks becomes enough of an open secret to make possible a “100th-monkey effect,” wherein suddenly everyone is claiming they knew all about the widespread autism all along — and they will in fact be telling the truth. Whether it’s optimistic to think this will happen in our lifetimes is another question — it may be that a critical number of diehards will in fact have to pass on first, and you and me with them — but you’re right, what’s not to like about placing a hand on the Great Wheel, and then watching others imagine the world we’ll be in should it give to our touch.

  6. In the interest of telling our own story, a few points from this practicing Jew:

    The G-d of the Jewish people is not called Yahweh. Please, please, please don’t use that word. Yahweh is a Christian vocalization of the Unpronounceable Name YHVH (Yud Hey Vav Heh). It appears without vowels in all of our sacred texts because it symbolizes that G-d is beyond our understanding, beyond what we can see or imagine. In this, the G-d of the Jewish people is very different from the Christian God. When the Christian translators of our texts saw the unvocalized letters, they immediately tried to give our G-d a pronounceable name. In this, they completely misunderstood what we were getting at-or simply dismissed it.

    We do not refer to any of our sacred texts as “The Old…” anything. The term “The Old Testament” is a derisive term, meant to signal that our sacred scriptures are outmoded. To us, they are not. We refer to the OT of the Christian Bible as the Tanakh (an acronym of the first Hebrew letters of the three main portions of the text).

    You are correct in your assessment that we don’t depend on a single interpretation of the text. While there are many Jews who believe in the literal truth of the Tanakh and Talmud, understanding metaphor is essential to our worldview, and even the most orthodox among us understands that the “literal” word must be interpreted, discussed, and argued. For most of us, whether the stories are factual takes nothing away from their essential truths.

    When I was a child in Hebrew school, one of my classmates asked whether Moses had really existed. Even at the age of 11, I knew that was the wrong question. It didn’t matter whether anything in the Bible had actually happened. What mattered was the energy of the stories, the truths embodied by the stories, and where the stories got you. To me, that a group of people, in the midst of an oppressive and unjust social structure, perceived that G-d is a G-d of liberation and justice is far more miraculous than anything else they might have written!

  7. Mark Stairwalt says:

    Thanks Rachel. Have made changes accordingly. Had considered using the vowel-less spelling, but was worried I might simply confuse some readers — and Tanakh was a new term for me, thank you. I was indeed writing from the Christianist perspective that at times seems pervasive in the US, and am happy to be corrected; your suggestions improve the piece. Thanks again.

  8. Mark, thanks for making the changes, and for a very interesting article.

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