When You’re Up to Your A** in Alligators …

AlligatorsLOne thing I’ve kept an eye on over the six months since Shift Journal launched has been, “What can we be doing here that isn’t already being done well elsewhere?” Last weekend KWombles and I exchanged some emails over this subject; at her suggestion I’m going to try and recap our conversation, doing my best to live up to her estimation that this should make for “a wonderfully thought provoking post.”

It’s clear to me that what is being done well elsewhere is that resistance is being raised against those who define autism as a vaccine injury, and who are intent in any case on curing autism regardless of all human cost but their own.  Autism self-advocacy in terms of disability rights is coming into its own more generally as well, with heady recent achievements of its own.  While these efforts are in good hands they can always use more momentum, and while Shift will continue to support them, it’s been clear to me almost from the start that this site is situated somewhere behind the front lines in the various Autism Battles.

The thing to do then, I believe, is to make full and best use of that fact.

In writing to KWombles about possible topics for Shift contributors, I tried to get at what this might mean by asking, “What are you all moved to write about when you don’t have bullets whistling over your heads, then?”

This prompted a charming shout-out from the tail end of a post at Countering AoA; I enjoy being charmed—and the post itself seems to gain substance with each re-reading—but I wasn’t satisfied.

“If all dialogue goes on in the context of opposition,” I suggested in another email, “then it’s all too easy to let that opposition set your agenda for you.”

KWombles replied, “Is there another way to be, to think about autism, that isn’t in counterpoint to those who are into biomed and believe autism is caused by vaccines?”

Now we were getting somewhere.

Consider that we have gotten ourselves into this vulnerable position in the first place by allowing others to define what autism is, if not for us then for the world at large.  When the vaccine-injury movement started, too few spoke up for us, because too few hearts or minds had been won over or even exposed to our view of who we are as autistic people, or what autism is.

What’s been done to correct this situation?  With the discrediting of Andrew Wakefield, we should be heading into the mopping-up stages of the vaccine-injury battle, yet what progress in the larger war has actually been made?  What’s to stop it all from happening again, with yet another likely suspect on which to “blame” autism?  What’s to stop us from winning these battles while losing the war, on and on with no end?

Do we in fact have an articulate, consensus view of who we are, or what autism is—or better, an array of well-articulated, complementary views—views that make readily apparent sense in such a way that will encourage widespread public skepticism the next time some half-baked cause or cure begins to gain traction?

The job of formulating such views seems to have been abandoned to a handful of scientists whom we hope “get” autism as we experience it and see it being experienced.  And yes, there are mysteries which will have to be unraveled by the slow progression of science, but here we are now, fully able to be in community on the internet, and to offer the world an accounting of ourselves as a community, on our own terms.

Not that I’m being remotely fair to KWombles here, but I suggest that if the best we can do to define autism for the non-autistic world is to steadfastly proclaim, “It’s not vaccines!” … then there is still a lot of work to do.

As things stand, we are still dancing to a tune called by those who have just been “defeated” in the Battle of Thimerosal, still attending more to their agenda than our own, and still nearly as unprepared for the next battle as we were for this one.  Yes, we will always have to deal with curebies and hucksters, but if part of the problem is that we’re always having to engage them on their own terms, then part of the solution is to disengage and turn some attention to defining and promoting the terms on which we are willing to engage.

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

(continued in It’s Hard to Remember Your Original Objective Was to Drain the Swamp)

on 03/12/10 in featured, Politics | 2 Comments | Read More

Comments (2)


  1. Clay says:

    I’d like to see a major push to discredit and label as snake-oil salesmen such people as the Geiers, Boyd Haley, and Rashid Buttar, and MADE KNOWN in the media as such. It should be easy, Kathleen Seidel has done all the groundwork, and they’re so far wrong it should be easy to prove it.

    We get journalist friends to spread the word how there are so many hucksters selling false hope, fighting for every dollar, taking advantage of parent’s desperation, ’cause that’s just what’s going on.

    We’re acting like Democrats who can’t get a Health Care bill passed, despite having a super majority in Congress. Victory is ours, if we grab it.

    Umm, maybe I should go to bed now. :-/

  2. Mark Stairwalt says:

    No argument here, Clay; them are the alligators alright. People need to know who we are though, as well as who we’re against. Even if we do discredit particular snake-oil salesmen, people will still be asking, “But who will cure the terrible, terrible autism!?” If on the other hand we can bypass those guys and make the case directly that “cure” is itself a questionable proposition, then that entire alligator swamp will have been drained, and the market for snake-oil dried up along with it.

    We’re also acting like law-and-order Republicans, with our righteous indignation and lust for justice, all of which is fine, which is excellent, actually—so long as we don’t also repeat their mistake of actively or passively enabling the legal or social environment that makes it so insanely profitable to sell bootleg liquor, or recreational drugs—or snake-oil.

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