3/29: this was put up at autisable, but retitled.
Have I said before that I miss a lot of the stuff going on in the vastness of the interwebz relating to autism? I'm pretty sure I have. Those of you who read me on a regular basis know that my emphasis is on countering the misinformation that places like Age of Autism and Huffington Post put out there about autism, treatments, and other woo while trying to promote a positive perspective on parenting children with issues and promoting the tenets of acceptance, accommodation, and appreciation for individuals with neurodifferences and disabilities.
I don't go onto many of the yahoo boards or the various forums that are out there, and I know that I don't know about the vast majority of them. My interwebz world is fairly limited, at least as it relates to that area of autism support groups on the internet.
I had no idea in saying I support Ari Ne'eman's nomination to the Council on Disability in my last post that I would get the whirlwind of exchanges I did, but it was an illuminating experience, to say the least. If you haven't glanced through the comments, I think it's worth your time, if for no other reason than as a reminder of how easy it is for communications to be misunderstood, even when two parties believe they are being explicitly clear. Ah well. We put ourselves out there, we communicate in good faith, and we hope for the best.
People (well, most people, anyway) like to categorize things, arrange them. It's why we have stereotypes and various heuristics: we make use of mental shortcuts to help us navigate the social (and outer) world successfully. These often fail us, though, and when we become aware of the pitfalls of these heuristics, like confirmation bias and availability heuristic, that we can take them into account when we're making up our minds about the outer world.
But what do we do when we are communicating with someone and the way we use language to communicate differs, as I found happening in last night's thread? We've all run into problems where we use words differently, to mean different things. Sometimes, these are agreed upon differences in connotation and we can work around it. Other times, though, the person is using the word in a way that we would argue based on all known definitions is wrong. Take censorship, for example. AoA's Katie Wright argues that Sebelius is calling for censorship of the anti-vax position by the media. Orac argues that censorship doesn't mean what she thinks it does.
It's no big deal, I suppose for Katie and Orac that they disagree on the word; they'd both willingly assert they are on opposite sides and nary a desire on either part to reconcile. And to a large degree, when there is a clear divide: autism is caused by vaccines/science shows no link between the two, I think a failure to reconcile the terminology chosen is understandable and unavoidable.
What do you do, though, where there is a disagreement on the usage of language between individuals who aren't at opposite sides? It's an interesting dilemma. Certainly, a willingness to operationalize the definitions by both parties so that each can see how a word is being used differently and at least have an insight that they are, in fact, speaking of different things and using the same word can be incredibly helpful to shifting the dialogue back on track.
What is also helpful, undoubtedly, is a willingess to hold one's ideas with a certain tenuousness, a malleableness to it, that allows one to bend when a miscommunication is signalled, or when new and contradictory information comes in, so that one can adapt to the situation and to the new information. Dogmatics and ideologues, like those in the "vaccines did this to my child" group, hold fast and tight to their version of reality, refusing to consider that their version of reality is not in keeping with the known scientific evidence at hand.
When we become closed, so certain of our version of reality, of events, that we will not shift, not one iota, we have, whether we like it or not, become dogmatic. It is not an adaptive trait. It certainly isn't conducive to constructive conversation and debate. It shuts it off, in fact, when one party is dogmatic.
All one has to do is wander over to Huff and read the exchanges in the autism-related articles and watch the dogmatics hammering away at each other, day after day. It looks like they're talking to each other, but they're not. They're using the other as a prop and nothing more.
We should want to move towards dialogues. Not between the dogmatics; I think once we've ascertained that someone is being dogmatic, just I've asserted before about not being rational, we can move on from trying to engage that person. I think I specifically said in a previous post, that unless you enjoyed the feeling of pissing in the wind, there probably wasn't much point to it.
I use the phrase autism community as a short-hand, not because I think we fit the definition of community particularly well, but because parents, educators, scientists, physicians, other support specialties, and the individuals on the spectrum all comingle on the various sites relating to autism. Community suggests we at least hold certain positions or beliefs in common. In a real-world community, we might all live in the same area. Or we might attend a church and hold core tenets in common.
I am not at all sure that the people navigating the internet world coalescing around autism have any core tenets in common, at all. I think there are many subgroups that do, but I think it's highly likely that as a whole, the center does not hold. People who believe their children are vaccine damaged and really, really sick are not talking about the same thing as parents who do not see their children that way. And that's just one division in the community. There may be very few commonalities, very few words or constructs used in the same way.
Unification of the autism community as a whole is not possible nor is it desirable, if we aren't even agreeing on the core tenets. We need, instead, to clearly delineate where we stand, how certain we are of our footing, and what our goals are.
If we agree on the operationalization of definitions, if we agree that we'd like to end up in the same place: acceptance, appreciation and accommodation, then I'd say we're in the same community, even if there are key differences in where we are coming from. Perhaps in this way, miscommunications can be averted and the center hold.