Father knows best?

31 May

Larry made a couple of comments on my last but one post regarding the vaccine/autism link that puzzled me a bit. I thought at the time that he’d missed the point.

Larry is not quite as enamoured of science as I am – fair enough – although he sees the dangers of the anti-vaccine lot he sees a wider picture. Thats what he was trying to get at.

Trouble is, of course, that blogging is not a great medium for seeing a wider picture. Blogs of all kinds tend to hone in over time on a very particular idea. For this blog, its become the poor science sometimes associated with autism. This is inevitable as a blog ‘ages’. I write about this as I feel it is vital to expose the end result of autism related quackery. Injury, abuse and death.

Around the same time, there was a brief flurry about an article concerning Sigourney Weaver’s take on autism, which is refreshingly positive.

I was going to blog this article myself a few times but there was something bothering me about it that prevented me. I click on to what it was yesterday after thinking about Larry’s comments. Here’s an excerpt from the article:

The movement has a strong Web presence at such sites as Neurodiversity.com, Left Brain/Right Brain, Autism Diva and The Autism Acceptance Project, http://www.taaproject.com

So what’s wrong with that? Its great to get a mention, of course it is. But what bothers me about it is that, of the four sites listed, only _one_ is owned and run by an autistic person.

That isn’t right. That’s wrong. Something has gone wrong when the web presence of ‘the movement’ is painted as being mainly non-autistic.

Larry wrote a piece yesterday that elaborated on his thinking.

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?

I’ll be frank, it took me aback to think that Larry though that way about the Hub. However, he does and it needs addressing. And as much as I might want to take the easy way out and pooh-pooh it, my mind keeps coming back to that article listing the web presence of ‘the movement’ as mainly non-autistic.

This is not to say I agree 100% with Larry as I do not. I do not think that ‘the message’ should come primarily from autistic people, not parents. I believe it should come from both, equally. However, I believe that the message should be formed by autistic people and those of us who are not autistic should support that message. I also know that Larry’s assessment of the situation in the UK regarding mercury is sadly wrong. It is getting worse, not better and it needs to be actively challenged and fought.

However, I _do_ agree that the science/medical issues are very much secondary to the fight as Larry defines it. I _do_ agree that no parent who claims to be an ally of autistic people should be using the line “but you can speak for yourself my child cannot” and I would be horrified to think that any parent on the Hub _has_ used that line or any equivalent of that line. I _do_ agree with the adage (to paraphrase) “nothing about them without them”.

So what do we do? I cannot ignore this, but at the same time I will not stop blogging about what _I_ care about.

What needs to change? I think the Hub needs some addressing. I have a loose system in place wherein any entry I’m unsure about I refer to two other people, at least one of whom must be autistic for their decisions. If it requires a casting vote then I do that.

Maybe the Hub requires more direct control from its autistic members? How would that happen?

Any other ideas? What else can happen to address concerns like Larry’s?

51 Responses to “Father knows best?”

  1. Kev June 1, 2007 at 18:32 #

    _”Yes this section of the internet, hub call it what you will is misrepresenting neurodiversity to the opposition because “we” are not representing a wide enough spectrum of neurodiversity and have allowed the impression to proceed that neurodiversity is about autism only and that the creed of neurodiversity is only to prove that mercury has nothing to do with our being here.”_

    OK, thats it. I’m out of here. Please count me out of neurodiversity.

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