It's not that easy, though, or shouldn't be, to assign bad guy status, or to reduce people into simply two groups, with each group seeing itself as the good guys and the others as the bad guys. There are several problems here, not the least of which is the dehumanization of the other group, and the fact that getting along, finding consensus and problem solving ain't happening with a group you see as less than human and worthy of derision.
And it's come to that, in many ways, in what can be argued to be the autism-vaccine skirmishes (if not outright war). Now, I have very little doubt that those parents who are militantly anti-vaccine, who blame vaccines wholesale for everything that's gone wrong in their lives, want it to be a war of sorts. I've already written this week of their scorched earth policy.
It's enough. Using your bully pulpit to intimidate people, to harass people, threatening to sue people who disagree with you, it's enough. It's enough to begin to change the mainstream's opinion of your role. You're not the underdogs who've been dealt a blow by a big government-industrial collusion to damage children. This isn't Erin Brocavich. You know? You're not the little guy. You're not David. And I don't think even you would cast yourselves as Don Quixote. But perhaps you do; perhaps we all do. Isn't that the ultimate testimate to how we view ourselves? That we stood, and we stood firm.
I'd argue that it ought to be possible to stand firm to ideals that we will not dehumanize those who do not agree with us. Autism shouldn't be about ideology. It should be about science. But, in the autism-vaccine skirmishes, it is becoming just that: ideologically driven. One side believes vaccines did this. One side believes there is an autism epidemic. That the big pharma wants to turn our children autistic. Still stupid. Sorry. It is. Gonna stay stupid.
One side in the autism-vaccine skirmish needs someone or something to blame for their or their child's autism. Alcabes writes in Dread,
The Black Death is also our model for the central role of public reaction in defining an epidemic. Until there is a public response, there is no epidemic. Autism became an epidemic only once policy guidelines in the United States required that public schools make accomodations for autistic children.Later on, Alcabes notes,
An epidemic must be attributable to people who are disliked or activities that are disdained.
According to Alcabes,
Latter-day epidemics with elusive causes allow people to lay blame.
This is what is happening here. A small division of parents (sorry, internet yelling doesn't mean there's a lot of you), perhaps around 10,000 or so, although I'll double it and say 20,000, based on the various membership numbers of yahoo groups related to the autism-vaccine mythology, have laid the blame at pharmaceutical companies, the AAP, the federal government, Offit and Nancy Snyderman, and anyone on the IACC who has the temerity to not agree with their idea of causation.
So, how do people who think that autism is not vaccine damage, and do so based on the preponderance of evidence *back away from the exchange with the anti-vaxxers ** and not engage in the same scorched earth policy?
Well, for starters, we keep uppermost in our minds that desperate need for answers they are feeling.
We remember the need for feeling in control that is driving some of this.
We remember that sick feeling in our stomach when we know something is wrong and we don't know how to fix it. That's where they are, some of them.
And then, we remember that some of these people aren't nice people. They aren't interested in kumbaya, even if it's kick-ass. They don't want to make the world a better place. They just want it to be better for them. These are the people who bully. Who intimidate. Who threaten.
We don't have to demonize them; we need to feel compassion for them. We also need to remember that some of them are not to be trusted, are there not out of desperation, but to take advantage of that desperation. To use their bully pulpits.
And we stand. Maybe with a little bit of the Don Quixote in us, maybe with a lot of him. Tilting at windmills. Well. It's all the rage, you know. What these parents do, what these organizations do, the disinformation they spread, the fearmongering they engage in, the ugliness of spirit they show as they ravage and feed on each other's ugliness (go read what they write on Offit); all these things are actively hurting our children and adults on the spectrum. They're hurting us as parents of autistic children. If their portrayal of parents with autistic children wins as the dominant mainstream impression of what autism is all about, what parents are, well, holy shit, you really want any part of that? You want to be thought of as woo-loving, deranged-mineral-transport-believing, for Christ sake, RNA-melting on your tongue and draining-your-wallet gullible, desperate parents who think nicotine patches, HBOT, chelation, IGIV, and now pot are the way to recover your children?
I don't. So, I'll do a little tilting, if you don't mind. A little kick-as kumbaya.
For an excellent and absolutely important read that, well, tilts a little at windmills and stands, stands tall and proud and impressively, go read David Brown's "Sore Winner" at http://evilpossum.weebly.com/vaccines.html.
*(don't quote me the 14 studies; it just proves my point) --see http://www.nap.edu/catalog.php?record_id=10997 for the IOM's 214 page book on Immunization Safety Review: Vaccines and Autism that can be downloaded for free --
**(sorry, that's the label they get when they no longer spend their time advocating for research, for increased safety through testing for risk factors and instead spread the woo far and wide and call people who do vaccinate sheople and then go and write for and support sites like whale.to)