Monday, May 10, 2010

The can of worms

For Martin Luther it was the diet of worms, for me it seems a can of worms, I'm not going to eat them :-

It seems I still have not made myself clear enough. Over the past few days and if you look at Square 8 and LBRB you can see more discussion, hub bloggers have been indulging in even more navel gazing and recriminations, old wounds have been opened, disputes going back almost a decade, re unearthed.

This is not about who is or is not a "fake" autistic. I want to knock on the head the assertion that was made by a former prominent autistic speaker, that people like me should tote their diagnostic papers to conference organisers before being allowed a platform. I have said, that it would be an extraordinary requirement, and one unprecedented in the world of disability organisations in general. To begin with distinguished academics are accepted without having to hold their degrees and diplomas aloft. Parents do not have to put their children's birth certificates on display. Not only that it would certainly be illegal in the UK to treat one section of the community, a disabled one less favourably than the neurotypical, who ought in return to display a certificate that they have never even remotely been diagnosed with anything in the DSM. I'm guessing the same discrimination argument would hold elsewhere, it's a lawyers charter. It's the sort of idle speculation one can make in the public bar, along with other pledges to set the world to rights, but it does not belong in the real world, and it surprised me that any one with a respectable organisational and administrational pedigree (in the ASA) could ever make that suggestion. There is no discussion on this issue, don't bother to post to my blog about it. The issue is closed.

Of course for anyone to masquerade as something they are not is Fraud. This is an issue covered by Kathleen Seidell with respect to the qualifications of AoA's favourite scientists elsewhere,. It's something I probably cannot repeat directly on my blog, I don't have the protection of the first amendment. I am not really at liberty to play the popular parlour game of naming suspect celebrities either, those who have not already been open about their diagnosis, as given the current stigma that still surrounds "autistic spectrum disorder" a stigma I might say that is encouraged by the likes of Autism Speaks in the USA, to name any individual, even Bill Gates as Temple Grandin frequently does, could technically be considered defamation in the British courts.

Of course it is unlikely that Mr Gates would sue every individual who has ever perpetuated what is in effect nowadays an urban legend, however it does remain as impolite, and inaccurate to speculate about any living person's diagnosis, especially without the background details.

I wish I did not have to preface my post with all that, but there are matters that won't lie down. Especially regarding functioning level, which I covered in my last post. You might have thought that post was about Amanda Baggs. It was not, it was about my Mother.

I know what I have frequently been accused of on the internet, of being a "shiny aspie" that is to say one of the elite who is at University post grad level. And that is pursuing only one narrow section of interest. To repeat that assertion is a defamation as much as anything else. I do not think I would have been elected onto the board of the National Autistic Society on that basis at all. Neither is the National Autistic Society, as some have alleged, and organisation that only cares about one section of the autistic community. Far from it. The organisation is made up for the most part of parents still, and I would think it reasonable to assume that a poll of those parents would show that they are caring for offspring at every level on the autistic spectrum in the same proportion as such people exist in the general population. The NAS has pioneered care for people on what is sometimes called "the more complex end of the spectrum" and even on the hub there are parents whose children represent a variety of "ability"

I am not even going to use the word "severe" not because I dispute it, because experts do. When you only see what is closest to you, you don't see the whole picture. If I based my advocacy solely upon my own wants and desires, I would not be doing anyone a service least of all myself. Yet on AoA and elsewhere we constantly see parents whose only care (perhaps rightly so in the context of their lives) is only for their child, or children like their child. When that advocacy steps over the line and makes accusations at others and seeks to disenfranchise them either for advocating for their own proper rights, or those of others, that is no longer advocacy it is discrimination.

There is a post doing the rounds at the moment, regarding Amanda Baggs. I am sorry I still have to raise this topic. It says that she, at a much younger age than she is now, wished to advocate for the autistic children she worked with when she was hospitalised for schizophrenia . Is that a crime or something to be praised?

I have a friend, no doubt a shiny University aspie too now. (Though I knew her before then) who also works with autistic children. So did Claire Sainsbury author of "Martian in the Playground"

Mike Stanton, a parent of what many would call a "shiny aspie" is also a teacher of children with profound intellectual impairments. and so it goes on.

The difference with us and Harold Doherty for instance, is that do not draw a line above a notional IQ of 70, or a given level of functional speech and say, I don't care about the rest of you. We care about everybody.

And so did my mother, she was a leading light in a broad disability movement, that respected people with intellectual impairments and amonst the people she would assist, and who she worked with were parents of children with profound impairments every bit as "severe" as those portrayed in the negative focused videos that exist alongside ours on youtube.

Of course this ought to be an end of it, I fear it won't be. Feeding the Trolls is an exercise that never ends, the more you feed them, the hungrier they get.

I'll end on another poem entitled "the can of worms

The weary worms come out the can
Struggling in comprehension of
Who canned ‘em up
You, or I or some also ran
Canned up the worms
Can we then come to terms
With the lowly weary worms ?


Lyn said...

The whole being black enough thing comes to mind. Folks should stop that sort of thing.
Your mother seemed like she was very cool and extraordinary.
Questioning whether someone is autistic enough seems rude.

Justthisguy said...

I remember when Miss Baggs listed me as an "autistic blogger" and I begged to be excused from the distinction, being not really sure about my autitude, and thinking myself to be um, "mostly normal."

It comes in degrees, people!

My own opinion is that a touch of the "A" is generally good for one, and a lot of it is not necessarily horrible. There are in-between states, too. All humans are humans and should be treated as such.

I of course will have no truck with post-modern feminist silliness.

Justthisguy said...

Oh! And further: I think of Jeff Knox, the son of Neil Knox, of NRA fame. He has admitted having a "developmental disability" in public print. I have exchanged email with him in which he urged me not to carry on with my plan to have "Autistic Gun Nut" printed on t-shirts and sell them to people. Mustn't Scare the White People, you know.

And then there is Eric S. Raymond. I betcha you've heard of him. He had a blog post a while back in which he discussed neurotypicality, and the absence of it. He says he's not autistisc, but does have Tourette's Syndrome and a bit of Cerebral Palsy.

Doesn't seem to slow him down much; he seems to be a dab hand with sword and pistol.

Weird, strange people are the salt of the human stew. It would be very bland and tasteless, so to speak, if we didn't exist.