8/25/2011

Imagine...

Learning will be cast into the mire and trodden down under the hoofs of a swinish multitude.
--Edmund Burke, brilliant bloke

Imagine a belief so tightly held that any one who spoke against it was instantly vilified. The autism community wastes so much time, so many bytes, vilifying others because of differences in beliefs about  causations, differences in beliefs about treatments, differences in beliefs about whether autism is a personality to be cloaked in pride or a crippling disability to be cure of at all costs.

Stephanie wrote a follow up piece to one I wrote on facilitated communication and the central proponents of neurodiversity being staunch advocates and promoters of FC. In the comments she wrote that she doesn't commit "to the hard-line scientific stance" I do.  Ah, and there's the rub. In the autism community itself, I'm not sure very many do. Fair enough, in the wider world, most don't.

Most people are not skeptical. That doesn't make me superior, better, or infallible. It doesn't even make me insusceptible to well-packaged woo. Hurt enough and you'll try a lot of stuff to make the pain go away. Suffer enough and you'll do anything, skepticism gone in the midst of desperation.


I get it: most people like a little bit of woo in their lives, dwell in grays so much better, appreciate the idea of things that can't be reduced to scientific facts.  My first thought after reading that comment was that if more people adhered to hard-line scientific stances, there'd be a whole lot less people getting hurt by woo.

And there's so much pseudoscience masquerading as science that one wonders that anyone can wade through the muck of it and come out clean. And this is endemic. Perhaps even epidemic. Nay, I say it is a veritable frakking tsunami.

So while I wish more people took a more skeptical approach to the treatments they choose to use, endorse, sell, etc, I understand how compelling testimonials are, how persuasive the pitch men are, how bad it can be when one is suffering and simply wants relief, whatever the cost: my beef isn't with them. It's with the charlatans who take advantage of others. And, yes, it's against those individuals who, despite the exposure to the science, choose to push it, promote it, and skewer anyone who dares to speak out against their own sacred cow.

Rachel asked in a comment to my post on Autism Speaks and Wakefield if I would back off my denouncement of the neurodiversity movement given Autism Speaks' unfortunate,  misguided decision to sponsor the National Autism Association's convention. I'm not backing off my denouncement of a group that's supported FC since at least 2008. That's not evolving; that's maintaining the status quo.

I'll acknowledge political expediency and the need for groups to appeal to the largest number of people when raising money. Sometimes inclusion isn't about a belief in inclusion. Sometimes it's about the money, and there can be no doubt that the more inclusive a group is of its core constituency, the more money it will raise, the more supporters it will have.  This is true of all the autism organizations that raise money or accept donations. Most of those organizations are run so that there are 990s each year for them so that some level of transparency of what funds are raised and how they are dispersed is there for the public to make a decision. At least we can look and make our decisions based on that level of transparency.

"When bad men combine, the good must associate; else they will fall one by one, an unpitied sacrifice in a contemptible struggle.  --Edmund Burke
We stand, this community, in so many divides now, that it's a wonder any two of us can get together on anything. And yet we do.  I know we do, as I see it in bloggers who support each other on a daily basis, wishing the others well, praying, caring, giving.

"I am convinced that we have a degree of delight, and that no small one, in the real misfortunes and pains of others." --Edmund Burke
Yes, some seem to travel the interwebz looking to get their rage on. It happens far too often and has nothing to do with the people they attack or what the people are saying. Reasoned argument far too often gives way to nasty mudslinging to see who can inflict the most harm. And this is certainly not restricted to our community. Oops. How dare I call it a community, right? Divisions...

A community doesn't mean everyone is homogeneous and shares the same features. It doesn't even mean it will share all the same goals and core beliefs. And we constantly shift our communities, from the micro level to the macro to suit our needs at the time.

Money, well, that's a great leveler. Everyone can belong. And so is hate. Hate the same group as us? You're in, buddy!

Here's the thing. I get that the people in the autism community are just that: people. They have agendas, ideologies, axes to grind, all the grist and mill that accompany social groups of people. Add to that, we have the fact that almost everyone in this community has some issues communicating clearly, and that's even if they're "neurotypical."

And I reject neurotypicality. It doesn't exist. And for those who would tell parents that we not only don't belong to the neurodiversity community, we don't belong to the disability community, I'm going to borrow Colbert's wag of the finger (you decide which finger that is), and point out that the disability community is a large segment of our population and the older one is, the more likely one belongs to it. Don't assume that a parent doesn't have an issue, a disability you don't know about because he or she hasn't disclosed. I won't presume your functional level based on what you can do on a keyboard if you won't assume my lack of disability.


11 comments:

sharon said...

This is great Kim. Awesome even.

melbo said...

Kim, this is brilliant.

I've found myself struggling to think of any well thought out response to your posts lately so I've been quiet but have kept reading.

I have nothing of value to add except that one of the things I admire most about you is your ability to be both inclusive of all viewpoints and yet still able to call people out when they cross the line. It is something that is sorely needed.

While people are entitled to their opinions, not all opinions are valid or right. Some of those opinions can be downright harmful if they are not challenged.

I don't know if any of this makes sense. I just wanted you to know that I appreciate everything you post and that you put yourself out there in order to do so.

farmwifetwo said...

"In the autism community itself, I'm not sure very many do. Fair enough, in the wider world, most don't." Unless the ABA crowd attacks the floortime crowd claiming the lack of peer reviewed litterature... of which there is none for ABA either but they ignore that fact.

It's amazing how the battles are fought in link wars and not an iota of science anywhere.

I've learned to become a lot more suspicious and request a lot more information over the years. Ticks people off, both in autism-land and RL. But, my children are thriving. Mine have beaten the dx's and although only one will be "cured"... the other atleast will be able to make his own choices and use his own voice and be able to tell people ASAN and other high functioning autistics.. DO NOT SPEAK for him.

kathleen said...

YUP! (Can't forget the wanting to be top dog too..oh, and power..and recognition...Sometimes it would seem that some want that more than the actual agenda they are pushing...)
Well said..:)

chavisory said...

This is an honest question: Is it really that central leaders of the neurodiversity movement are proponents of FC, or that leading proponents of FC cloak it in the language of neurodiversity?

Because I count myself a proponent of neurodiversity, but I'm all with you on FC. Real neurodiversity means valuing people for who they really are, and FC has failed to demonstrate that the communication it produces is truly that of the people in question.

farmwifetwo, we--being the "high-functioning" autistics, at least those of my acquaintance; I can't presume the opinions of those not of my acquaintance--do not want to speak for your son. We're all speaking for ourselves and will be thrilled for your son to be able to do the same. But I would take care about presuming which positions he will and won't take for himself. He might or might not wish to tell ASAN any such thing.

jre said...

A conscientious person would rather doubt his own judgment, than condemn his species. He would say, I have observed without attention, or judged upon erroneous maxims; I trusted to profession, when I ought to have attended to conduct. Such a man will grow wise, not malignant, by his acquaintance with the world. But he that accuses all mankind of corruption, ought to remember that he is sure to convict only one.

- Edmund Burke

KWombles said...

Sharon and melbo, thank you.

fw2, it's so much easier to just link or call names than it is to invest the time and effort to have ducks in a row.

Kathleen, let those who wish to be top dog be so. All the better to keep working underneath the radar to effect real change.

chavisory, that's how I had defined neurodiversity, but the symposium clearly did not define it that way. Kathleen's and my blog Respect for Infinite Diversity was an attempt to explain our belief in the value and worth of all human beings regardless of their functional levels.

jre, Burke had a way with words.

Rachel said...

Kim,

This is a great post, but I think that you've still got a double standard going on here. You say that the ND movement has supported FC since 2008, so there is no evidence of evolution. Fair enough. But I could counter that Autism Speaks has never had an autistic person in a decision-making position, that the tokenism of having a single autistic person on its advisory board is not meaningful progress, that the exclusion of autistic adults from the recent Top 25 Autism Blogs list they sponsored with Babble.com reflects the very structure of the organization itself, and that most of its budget continues to be at the same sorry levels regarding services and supports for autistic adults as ever.

I'm not affiliated with ASAN or the ND movement (or any other organization or movement), so I'm not making a political argument here. I'm just speaking to the double standard involved. Fair is fair.

KWombles said...

Okay. I'll stipulate that Autism Speaks has inadequate adults on the spectrum on the board, in key positions, but given the level of harassment that the token autistic adults get from their fellow autistics, it would take someone with strong will to actually take on the position. Autism Speaks works with GRASP on many things. It works with Alex Plank, and the token autistic, John Robison, on one of its advisory boards takes a ton of crap from people.

In other words, by (1) complaining that AS doesn't do enough and then (2) branding autistic individuals as traitors, well, the self-advocates are keeping the issue from seeing progress.

Autism Speaks isn't an organization meant to support autistic adults and their needs. It was founded to raise money for research.

They are shifting their focus to looking into adult services, but this will take time.

My criticism of the neurodiversity proponents who did the symposium, redefined neurodiversity in the way they did, and then did it with FC funding it is specific to those issues; I don't lambast them because they aren't providing more services to adults on the spectrum, making sure that adults in an area they have a chapter who need help getting medication or housing or emergency funds don't provide that service, for example.

You seem to be confusing a decision to continue to serve my local community through autism speaks, with my "token" autistic son on the volunteer committee and my "token" autistic daughters doing what they can to help where they can as being a full-on, uncritical endorsement of Autism Speaks. It is not. It was not presented as such. My refusal to place support behind the narrowly defined neurodiversity symposium and my continued commitment to support my local community and Autism Speaks as the organization that offers support and information to that community, well, I respect your right to decide this is a double standard, but I disagree.

Rachel said...

Kim,

I'm not at all saying that you're making an uncritical endorsement of Autism Speaks, and I'm certainly not saying that your son and daughters are "token" autistics. There are many autistic kids, all over the country, who show up at Autism Speaks events. I'm saying that putting one autistic on an advisory board is tokenism; if Autism Speaks has invited any other autistics to occupy a decision-making position -- and if those people declined based on what ND folks might think of them -- please let me know, because I've not heard tell of it. It's pretty much a given in the disability world that if you run a research, charity, or service organization, you put people with that particular disability in decision-making (not just advisory) positions. The Asperger's Association of New England does just that, and they have for some time. Autism Speaks never has. I see no evolution in that respect at all.

In any case, I wasn't criticizing your association with Autism Speaks; I was criticizing your implication that Autism Speaks is somehow evolving more than that ND movement. From where I sit, they're both stuck in untenable, polarized positions and, frankly, it's why I just continue my walk as an individual, attempting to build bridges with other individuals. I agree with your assessment of the ND movement, and I was simply pointing out that one could say the same for Autism Speaks.

And I share your concern about anyone telling non-autistics that they can't be part of the neurodiversity movement. That's like telling white people they can't be part of the civil rights movement, or telling Christians that they can't fight anti-Semitism. Minority people need majority support or nothing gets done, and one of the prime reasons that I no longer associate myself with the ND movement is because I feel that there are more bridges being burned than built when it comes making alliances with parents.

I always do my best to support parents; they are NOT the enemy, and I am NOT their enemy. We're all getting chewed up and spit out by a world in which we have to fight like crazy for every little thing we get, so ending up at each other's throats serves no one except the folks who control the services, and who hope we burn ourselves out fighting one another, instead of getting together and fighting for what we actually need.

Hugs,
Rachel

KWombles said...

Rachel,

My children do more than show up at the events. Bobby is invaluable as a volunteer helping to bring these events off. He will be on this year's local walk committee helping to plan it. That goes far beyond showing up and lessens his contribution.

I looked at the composition of the board of AS and noted that every single person on that board has tremendous influence and/or the wealth to make things happen. No apparent autistics. I don't know whether they've asked and been turned down. I'm saying why would you expect that anyone would take a position on any of AS's boards when the online autism self-advocates immediately label them traitors?

It's a nasty, hostile environment.


But you know what, it resolved the dilemmas I'd been having. You know why? Bottom line: my son has been treated with respect, appreciation and admiration by the local AS staff up to the president of the organization. He wasn't treated as token, as different, as less than. He wasn't dismissed as not worthy of conversation back in June. Any organization from the president of it who treats my son as equal, well, there you go: they have my support.

It's certainly not uncritical support. It's not blind faith in them. I'll write and speak up when something could have been done better, note where there's still improvement to be made, and there's always room for improvement and growth.

But I'll also point out that it's up to our autism community how Autism Speaks evolves and changes. It has a slim 180 employees and relies heavily on volunteers for the events that are held in local communities and to carry off the walk. So these things are a direct reflection of the willingness to commit to action.