Wednesday, May 30, 2007

Four legs good, two legs bad

I am not the only one who like Joel in his recent blog, can quote from 'Animal Farm'.

As I posted on his blog I very much feel at times like the pigs in 'Animal Farm' who having supplanted their masters in the revolution, now ape their habits and walk on two legs.

As the first person diagnosed with an ASD to have broken what I once thought to be an impenetrable glass ceiling (the metaphors come thick and fast I must be an AC apostate) and been elected to the board of the National Autistic Society, it is not just my fellow AC's I have to be looking at over my shoulder, for their accusations of having 'gone native' , * as I am equally liable to invoke the suspicions of NT parent councillors like Mike Stanton and his colleagues who might think the board are not pushing fast enough for the NAS to serve the needs of the many and not the few.

Be that as it may, the reason I am there is not so I can join the ranks of 'super-aspie' touring circus which Donna Williams has criticised for charging exorbitant fees - would that I had half a chance :) - I am there for the same reasons as I am becoming critical of a lot of posting in the autism hub itself, because I believe in the reasoning behind the slogan "nothing about us without us"

I have to say it, but the problem is that important though it is to disabuse the public of the notions that mercury poisoning = autism (which nobody much believes in the UK as we are still too busy blaming MMR) , important though that is, that is not where the main fight is, and that is to realise that autism is for life, and because most of us spend more of our lives as adults than children, that there we must have proper recognition and a place in society.

Furthermore, that although there are 'good parents' who agree with that and want it as an aim for there as yet young children, the message has to come primarily from us not them. If the parents continue to evoke that old line "but you can speak for yourself my child cannot" they run the risk of effectively taking our voice away, because we are the ones with the condition, the basics of autism are the same for everybody whether we have the IQ of an Isaac Newton, or the IQ of Forrest Gump (not that I set much store by IQ anyway which is another story). Well nobody reading this to my knowledge has met me as a preschooler, so how the hell can anyone compare a child to the adult the child became?

Amanda often makes the point so much better than me. So it is to Amanda's recent blog on privilege I now turn. As the pig who has learned to perform the circus trick of walking on his hind legs I am well aware of the privilege that invokes. In my most recent encounters with psychiatry, even when I was at my lowest ebb and most vulnerable, requiring the assistance of my laptop to communicate I can consider that I was less at risk than my less esteemed compatriots in that what I say these days carries authority. I am secure in my diagnosis for even though the last psychiatrist I saw entertained the common prejudice of the profession that my self awareness betokened very high functioning that she would not have recognised in our interview, she was not going to overturn the diagnosis, or recommend any horrendous regime of medication.

It was not always so. For before I got my snout so securely in the trough 'per ardua', I was not exactly welcomed by the other little piggies who to change the story now, definitely regarded me as the big bad wolf about to blow down their house of straw.

And while I am about it I'll huff and I'll puff and I'll blow Kristina's house down too, for you were indeed lucky that you were not present at the Liverpool conference last year, to have me blast you for your paper, (in suitably Hopkinsian alliterative style and Elioteric enigmacity) for having the audacity to psychologize the linguistic style of autistic utterance, that is fairly and squarely not your prerogative, it is Cosa Nostra and beware the Sicilian breakfast :)

Well I have now risked the hub's ice pick assassin for sure, for being so bold. I was always far too sympathetic with the rebel Snowball when I read Animal farm for the first time :)

* footnote, I was surprised to discover that Anthropologist Structuralist Claude Levi Strauss -the man who put jeans on the Amazonian tribes :) - was still amongst the living.

9 comments:

kristina said...

Always glad to be taken down----sorry I was not able to speak to you directly about the paper---one has to use the tools one has to try to understand, and be ready to stand corrected.

mike stanton said...

Good points Larry

Regarding biomed in general, the uk movement is growing. A lot of them are chelating and Amet's clinic is aiding the process. The Autism Biomed Europe group has over 500 members, who in my short time there seemed to be mostly British. So we still need to be alert to that.

But your main point, that autistic people have to lead the advocacy movement for autism is well taken. Meanwhile, parents like myself will continue to speak as we find, not because we want to pre-empt your role, but because we are trying to counter the current dominance of parents who advocate against autism.

Steve D said...

"Well I have now risked the hub's ice pick assassin for sure, for being so bold."
Bold, shmold. You are telling us how you feel and I respect someone who can and will do that for an issue he feels strongly about in spite of other people's impressions.
I agree on so many points, Larry, and it is through reading the blogs of folks like you and Amanda, among others, that I arrived at my surrent understanding of autism. I'm glad you wrote this post, because I have been dweeling on the comments you left on my blog and was unsure that I completely understood them. Now I do.
So where does that leave us? I always felt the beauty of the hub was that one could look down the sidebar and see who was writing the blog - a person with autism, an NT family member, or a professional. I regret that (for example) my blog falls under the categroy which is causing you concern, but I am unable to change the facts of the situation. What I will always try to do is listen to those who perceive situations different than I, and incorporate those views as I continue to formulate my own.

Club 166 said...

To paraphrase a bit...

"Some Levi Strauss' are more equal than others" :)

------------------

You've got the wrong Levi Strauss.

Levi Strauss was a 24 year old German immigrant when he introduced blue jeans to people participating in the American California gold rush in 1853.

Source.


I didn't see the date of death, but I'm very confident in stating that the dude is dead.

As to paying attention to the mercury morons, you'd have to be here to understand how pervasive and damaging this point of view is. Once one accepts that kids are "poisoned" it is easy to demean them as "damaged goods", not accept that adult autistics even exist, and concentrate efforts on eliminating autism and autistics.

I think most of us on this side of the pond wish for a quick victory over this nonsense, so that we can, too, pay more attention to all the lifelong issues that face autistics.

Joe

Club 166 said...

Oh, and as for your thoughts regarding "nothing for us without us", I don't think you'll find much basic disagreement on the hub.

Like Mike and Steve (and I'm sure Kristina, too), I have no wish to preempt your role in self advocacy, and also consider myself better informed because of the writings of autistics I have read.

So consider to bash away, as you see fit. But get your Strauuses right. :)

laurentius rex said...

Actually I am well aware that there were two famous Levi Straussen I did not think I would have to explain that particular deliberate confusion, I was actually making a point about the way in which Anthropology has been far from passive observance but actually defined particular cultures.

It has long been a criticism of European missionaries that they imposed western values and dress upon indigenous societies.

Levi Strauss and his structuralism was famously taken to task by Derrida http://www.geocities.com/prknrvlour/derrida4.html

As for little bricolage about the two Levis Strauss I think the joke was first made to my knowledge in the seven percent solution http://www.imdb.com/title/tt0075194/ though there does exist a slight possibility I may be mistaken it is a long time ago now :)

Club 166 said...

"...Actually I am well aware that there were two famous Levi Straussen I did not think I would have to explain that particular deliberate confusion, ..."

I actually considered that possibility after I hit the enter key and re-read your original post.

My bad. Sorry.

Joe

Kevin said...

"I have to say it, but the problem is that important though it is to disabuse the public of the notions that mercury poisoning = autism (which nobody much believes in the UK as we are still too busy blaming MMR) , important though that is, that is not where the main fight is, and that is to realise that autism is for life, and because most of us spend more of our lives as adults than children, that there we must have proper recognition and a place in society.....Furthermore, that although there are 'good parents' who agree with that and want it as an aim for there as yet young children, the message has to come primarily from us not them."

I agree and disagree.

I totally agree that the vaccine/autism side issue is exactly that - a side issue. It is secondary to the 'main fight' of acceptance.

That said, your assessment of the MMR/mercury/UK situation is not quite right. The UK is sadly becoming more embroiled in the mercury quackery, not less.

I think it is heavily discussed because it is the most visible political aspect of autism right now. It is almost a microcosm for the formation and spread of false information building up stigma.

Where I disagree is where you say that the message must come primarily from autistic people, not parents.

I do not agree with that. I think that the message must come equally from both. That is, and always has been, the ethos of the Hub. However, within that message, the people who guide and form that message (as oppose to delivering it) should of course be the autistic people within the group. Anything else is meaningless.

Sharon said...

I live in Northern Ireland. In the Irish media, north and south, autism is usually presented as a tragedy, an affliction destroying the lives of families and their young children. The autistic organisations here are way behind the times; the main NI one was called PAPA, (Parents and Professionals and Autism). Now on the website they use that title and Autism NI interchangeably. I didn't join them precisely because of that. Perhaps I should have, but to be honest, at this stage, I don't have the time to be doing real world, out of the house, work on a charity. The NAS has also recently come to NI so I joined it instead, knowing that it at least, is improving in terms of autistic representation.

When I see Irish newspaper articles or blog posts crying out for ABA or quack autism 'treatments', and using dehumanising language in the bargain, I write letters and comments, to try to redress the balance. I'm not setting the message, just trying to do my bit to spread it.