… It’s Hard to Remember Your Original Objective Was to Drain the Swamp

AlligatorsR(continued from When You’re Up to Your A** in Alligators)

With that in mind then, how to make full and best use of a site like Shift Journal?

Actually a tiny, excellent example happened just this Monday in an exchange of comments on one of Andrew Lehman’s entries. Andrew, abfh, and Laurentius Rex had a go-round that is exactly what I‘d like to see more of here, both in comments and in posts.  In answer then to KWombles question, “Is there another way to be, to think about autism …?” why yes, yes there are many, and we had better start knitting some of them together soon.  And here were three people beginning to do just that, comparing and sorting through ideas, feeling their way toward working out together and for ourselves what autism means, and—eventually—who we are, and how we are to be seen and understood by the rest of the world.

We need to be having thousands of conversations like that one, not just here but all over.  What’s happened at Shift is that a space has been created in which such conversations can take place, and where potentially, a consensus can begin to form—about who we are and what autism is—which can be advanced into the rest of the world to take the place of the one which leaves us vulnerable to being delegitimized as people.  This is not the sort of thing though that can or should take place under constant enemy fire.  As I wrote to KWombles:

… For instance, last Friday I took a stab at re-defining the word “spectrum.” I’d like to invite others to attempt similar re-definitions of other words and concepts, including autism itself.

So, from where does appropriate criticism for such efforts come from? From AoA and Autism Speaks? Should we even entertain criticism from corrupt, profit-driven folks who thrive on spreading hate, fear, doubt, and misinformation? Or should we have a space in which in which we can work these ideas out, maybe in public but not in direct engagement with our detractors? Perhaps one day we’ll have a brand new consensus on who we are as a population, an identity based on inherent worth and self-definition, which we can then advance under a united front. I see us taking years to get there, though, and I don’t see any help coming from the current crop of critics.

And also:

… I simply want to open up a space for new possibilities where the agenda is not dictated by whichever tribe of misguided goons last said or did something reprehensible. I think we can just ignore certain folks at Shift, unless they are able to establish themselves in their conduct and in their writing as peers. So far, the combination of obscurity and the tone Andrew has set here has kept us from really having to actually confront any of this. I’m not too worried about it, and if I have a message for potential contributors, it’s that I don’t want them to be worried about it either.

To which she replied in part:

… the idea of it being a safe haven, a place to regroup and reconsider before going back out into the fray are admirable ideas.

In fact, our whole discussion here would lend itself to a wonderfully thought provoking post, I think.

Recast with the idea of what if there were not a war going on for the definition of autism as a vaccine injury, what if a segment of parents weren’t subjecting their children to dangerous woo, where would the discourse on autism be? How would autism be framed if it were being framed from the perspective of autistic individuals themselves? How does self-identification play a role in the changing of perceptions on autism? How do we recast autism from a psychiatric disorder of dysfunction and abnormality to one of personality traits on a spectrum?

No one is going to give us permission to ask questions like this, or to begin answering them.  And until we stop waiting for that permission, start answering such questions, and make our answers known to the larger world in which this struggle is taking place, I believe we are only leaving ourselves open to more grief.

on 03/12/10 in Politics | 4 Comments | Read More

Comments (4)


  1. Mark Stairwalt says:

    For the record, I admire, endorse, and resonate strongly with KWombles’ definition of autism, which is deeply insightful, grounded in her love for her children, and a far, far cry from “It’s not vaccines!” I’d just like to see definitions like hers front and center and in the public eye more often. *We* all understand what motivates us to fight against dangerous, bad medicine, as this seems self-evident — to *us*. I don’t think it’s at all so self-evident to onlookers though. *That’s* what I want to change.

  2. KWombles says:

    Mark, wonderfully done.

    When a majority defines a minority, you’ve got problems. Psychological research shows that to a large degree (and I’m speaking off the cuff, but am more than happy to track down the actual studies), we define ourselves as individuals based on the feedback we receive from the people in our lives. There is no “I” without a “you.”

    Now, we may define ourselves in opposition to what others say about us and feel about us or we may take it all to heart and become what the other says (and most do). Or we may mix it up, but it is still a definition based on opposition.

    Oddly enough, unless I’m writing specifically about my children, how I write about autism most of the time (since it is spent in countering misinformation) has nothing to do with what goes on in my family’s life. We’ve grown over the last two decades of parenting my oldest, so that we can now see those things that make up autism that appear in my children in ourselves and our extended family. We take great delight in connecting the traits of my parents and siblings with the traits my children. My husband and I have said for nearly that two decades that when you take uber geeks and nerds, what did you expect?

    Yes, my children face issues. Oh, but so do I, and so do we all. How we face them is what matters. I am teaching mine to face their issues and get around them if they can’t surmount them, to find the joy in the uniqueness. And, if like me, there are issues they can’t get around, to find the humor. Laughter makes a world of difference in how we cope.

  3. KWombles says:

    “with the traits my children have.” There, better.

  4. Mark Stairwalt says:

    Thanks K; would that everyone had the well-drawn psychological boundaries and thoroughfares you and your family have.

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