Back in May, I wrote the last major piece on anti-vaccine rhetoric; nothing much more to say, really, as the rhetoric hasn't changed. The article itself was rather innocuous, but the comments got heated. This morning, a person who has commented on that same piece, I believe (same IP), but under another screen name, wrote this in response to a comment left by Ken Reibel back in June:
Well now, Mr. Reibel, the answer to that is really quite simple. Because you have proven yourself to not be trustworthy in these matters in the past many times over is precisely why you were asked to leave. It's not rocket science. Just as much of what we debate about pertaining to autism is not. I am surprised anyone really had to spell that out for you. You are unaware of your own reputation within the community? I have my doubts. I think playing the victim simply suits you and furthers your cause.She then continued in general:
Frankly, I have a really hard time imagining "grown-ups" with nothing better to do than continue to whine and "debate" over this issue five months later. You do yourselves no favors here.It seems more than a bit odd that the thread has been dormant since the beginning of June and she accuses us of whining. I pointed out that the thread had been quiet until she came back and started it. Rather than responding again under the same screen name she switched from "An ASD mom and first time AO attendee" to "Wah, wah, wah....." and wrote:
The title alone says it all. What was Ms. Wombles and her posse thinking? It's not completely one-sided and intended to bait others? Seriously? Please. And you expect to be treated with dignity and fair play in return. Because that is what you do? ICK! Make me sick. Take a long hard look at your own whining selves, please. Any semblance of fairness is lost in the title, so why bother with any of you. Good grief.....
Considering that the title of the piece is "The Reinforcements That Community Brings: Anti-Vaccine Narratives Provide More Drama," it makes you wonder what exactly the person means. The article itself is fairly sedate and points out that the anti-vaccine community provides feedback and support in a way that the evidence-based community cannot do. It provides a continuous narrative that makes sense of the insensible and is therefore going to be more appealing. Nowhere in the piece is there whining. I stand by my piece from five months ago, enough to repost it below and let readers form their own conclusions about whether the evidence-based section in the autism community is "whining" and "one-sided."
The Reinforcements That Community Brings:
Anti-Vaccine Narratives Provide More Drama
from May 31, 2011
Most of us seek out like-minded individuals who will reinforce our worldview. As I remind my students, we hold no beliefs we think are incorrect. After all, if we thought we were wrong, we wouldn't believe it. There's a reason that it can be hard for us to agree to disagree or live and let live, too. If I am certain I am right, and you disagree with me, then you must be wrong.
You can see the problems here, right? I'm not willingly going to go to a place where everyone believes the opposite of me. Neither are you. We wouldn't feel comfortable and we'd feel judged. Now, if we get a buzz out of entering the fray, swaggering into the others' territory to clash, if we cast ourselves as warriors, we'll waltz in day after day, but it isn't like going in as a wolf in sheep's clothing; nope, it's about going into the situation in full-wolf mode, no trying to fit in or create community.
So we've got a fundamental problem here; if the differences in belief systems are too great, there's no way to ignore those differences, and building community becomes difficult if not impossible because there is no sense that we're part of the same in-group. Indeed, the differences are great enough that we cast the other automatically as the out-group, and often, as the enemy. All the better to create a dynamic that provides ready drama and instant hero-status for the in-group members.
This is abundantly clear in the vaccine wars within the autism community. Friday Ken Reibel and Jamie Bernstein were kicked out of AutismOne (lots of coverage on this; links available atLiz's). All that was necessary for the expulsion was Ken being recognized; he's the enemy, and no enemy is allowed inside the sacred walls. And this event allows both sides to reinforce the in-group cohesion and solidarity; both sides push against each other to define their own boundaries.
I'd like to say that the science-based side is the more reasonable side, and I believe it is (it's my in-group and self-justifying along with confirmation biases means I'm going to see it that way), but I don't think we should be at all surprised they expelled Ken. They did it in 2008, too, after all. I think this played out exactly as everyone expected it would and provided the opportunity for each side to reinforce its own narrative and draw its own members closer. It's what people do.
The real question here is how do we combat effectively the growth of paranoia that the Canary Party (Age of Autism and like-minded individuals' latest venture) promises?
How do we effectively rebut people like Alison MacNeil, whose educational background ought to have been sufficient for her not to fall for the fallacious appeals to popularity and belief so that she can matter-of-factly write, "I went to the Green the Vaccines Rally. In the cab back to the airport after the Rally I called my husband. I said 'Honey this really happened. I just stood with 8,000 parents with the same story. We’re not crazy.'”
I don't think we can; she's found a more compelling, more dramatic narrative than the one that evidence-based individuals can offer her. She perceives any criticism as that of the enemy and is consequently inoculated against it. She has no reason to reevaluate her premises. She's got a ready-made community of folks who are the underdogs, fighting the man, ready to accept her and build her up. All we've got are scientific studies and often-pitying head-shakes for her as she tells her tale. Not hardly compelling enough. We shouldn't be surprised when she chooses people who will validate her beliefs.
Of course, those of us who've been in the vaccine-injury trenches already knew we weren't going to reach those who are already in the bosom of that enclave. To them, regardless of how genuine our offers of support are, or how similar our experiences as parents may be, we are the enemy. So we're not going to reach them and trying is a waste of our time.
What most of us are trying to do, then, are the twin goals of holding up ridiculous beliefs to the ridicule they deserve (for a completely different subject, Harold Camping anyone?) while providing accurate scientifically-backed evidence, even when it means acknowledging what we don't know.
After all, it's important to point out that there's more than a bit of "uh-uh, no she didn't" factor to MacNeil when she writes that "The other side has reverted to discrediting the speaker," only to follow up in the next paragraph with this attempted discrediting: "And it’s not like I embezzled millions of dollars from the CDC or was a heroin addict." That's not really support for her claims, is it? Besides, although MacNeil continued that science-based people were trying to claim Wakefield is a "nut" and Jenny McCarthy is a "slut," I don't know of any evidence-based individuals who have alleged that Wakefield is a nut. Dishonest. Unethical. Fraudulent. Greedy. But not a nut. And we really shouldn't care if McCarthy is a slut (not a phrase I've seen used against her unsubstantiated claims, by the way). If her claims are backed by evidence, whether she gets around or not is irrelevant. I think the argument has been that she's a Playboy bunny who doesn't know what she's talking about (and since she thinks antifreeze is in vaccines, it's fair to say she doesn't), but that's not the same as claiming she's a slut and should be ignored.
But again, all this goes to make a more compelling narrative. If you believe that the icons in your group are being attacked by the enemy, it's much more interesting to focus on one's strawman versions of those justified rebuttals of Wakefield and McCarthy while pointing out that on the enemy side, one researcher has been indicted for the theft of 2 million dollars and that one science-based writer is an admitted recovered drug addict. The first is relevant and it's fair to ask what role he played in the studies themselves; the second is an actual attempt at an unjustified discrediting.
How do you reach parents to show support and get there before those with more compelling, dramatic explanations convince parents that there are answers for why their kids have autism and that they can be healed if you just try the right mining chelator or other quack treatment? How do we create a vibrant, supportive community that lets parents feel comfortable in the absence of certainty while having the courage to withstand the temptation of promises of instant cures? How do we make our narrative more compelling than the vaccine-injury's?
I'm not sure that we can, really. If we're not willing to make stuff up, if we're not willing to engage in hyperbole and flights of paranoia, if we're insistent on being as scrupulously honest about the limitations of what we do know, what we can know, and most importantly, what we can do about the limits of our knowledge, then we are at a disadvantage.
Others have compared the anti-vaccine or vaccine-injury movement to religion. And it is; their beliefs are held with the fervor and conviction of true believers so invested in the ideology that they will sell their worldly possessions and hand out pamphlets in New York City, looking mystified and forlorn when the appointed time for rapture passes.
It's been five months. Has the Canary Party done anything? Well, their facebook page has 4,020 likes, so it's grown in facebook following. Their website now has a store attached to it. And it looks like they'll be attending (and have been) various autism-related conventions. The Canary Party continues to offer what I said it did five months ago: a narrative coupled with a way to feel active in getting that narrative out.
Contrast that to those who don't think vaccines are implicated in autism, and you'll see that we don't offer people coming to grips with the reality of autism a clean, neat answer. We don't offer them assurances that their child can be healed or that there's anyone to blame. What we have are maybes and don't-knows and those will never successfully compete with guaranteed answers and the promise of easy fixes.
The reality of parenting a child with autism is that it is an often terrifying job; we don't know how to best help our children navigate the world and we are often second guessing ourselves. We are inundated with so many treatments, pills, books, etc., promising a fix to particular problems, and it's a minefield to navigate. The anti-vaccine segment of the community offers a solidarity and a united front against "the man." It's a lure that's hard to resist.