Ragnarok

 
Veit ec at ec hecc vindga meiði
netr allar nío,
geiri vndaþr oc gefinn Oðni,
sialfr sialfom mer,
a þeim meiþi, er mangi veit, hvers hann af rótom renn. 

Við hleifi mic seldo ne viþ hornigi,
nysta ec niþr,
nam ec vp rvnar,
opandi nam,
fell ec aptr þaðan.

David Cameron (if that is your real name) and Ian Duncan Smith, do you think you can resist your destiny, your doom?

You are numbered!

The academic grind

My key note presentation at the Normalcy conference last week, went down a storm, the material I quoted from fellow blogger Chaotic Idealism was particularly well received. It was certainly the best presentation I have done so far and I don't think, for a variety of reasons, that it will be forgotten in a hurry.

But that is not the end of it. I have just about completed my poster on Ethics for the Birmingham Post Grad Poster conference and I have a couple of 'gigs' after that, starting with my appearance alongside Laurent Mottron and Dinah Murray at the UCL followed in July by a presentation for the Education School conference .  The theme of my next three outings is ethical research again.

That's enough to keep me busy into the summer anyway. I know my enemies will be hating this, but what the heck, this is what I do these days, I wouldn't be doing it if I had nothing to say that people were not willing to listen to. The University's motto is Per Ardua ad Alta, which means in English by hard work (or adversity) to the heights, and it is hard work as well, I didn't get here by accident.

My detractors ought to take notice, that it is not my "super shiny" aspieness that is getting me attention, it is the quality of what I say and my attention to detail in it all.

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 ?

A true story and a little lesson about functioning level.

Picture a women, who is so physically impaired that she cannot even get out of bed or sit up in it without assistance.
She cannot get dressed without assistance or use the toilet. When she does her number 2's somebody has to wipe her bottom for her.
She cannot cut up her food, and sometimes can't even even lift it off her plate to her mouth.
Her hands don't look like hands ought to any more, they are twisted and distorted, she can't even type, but has to use a machine that chooses the letters one at a time and painfully labours them into words and sentences.
Indeed she needs attention 24 hours of the day.

What kind of functioning level do you call that?

You, don't of course. Functioning levels are a discourse of intellectual impairments not physical ones, created out of older distinctions, wrapped up in Greek words to look respectable, words like "imbecile" "moron" "idiot" -- "low grades" and "high grades" the categories of the institutions used to sort out who could do useful work in the laundry and who could not.

The categories are not ones we use now, far too "politically incorrect"  even when rationalised by a later generation (in the UK at least) to educationally sub normal, mild and severe - or what they are in autism, remind me again lest I have forgotten "low and high functioning". Do those labels bear up in the real world?

The person I started this post with did not die in an institution though. When she died the civic business of a City stopped, as Council chiefs, Hospital administrators, MP's, Trade Unionists and Disability advocates paid their respects at her funeral.

And did they turn out purely for pity, because a once functional body had been brought so low? No they did not, they turned out to pay tribute to an individual whose legacy is all around, in the form of ramps and electric doors, a women's health centre, buses and taxis you can take a wheelchair onto. Her epitaph on her tombstone "A champion who fought for others"

That woman, through pain and fatigue, immobility and constraint, was a tireless worker, for civil rights, for access and a host of other things beyond the world of disability.

She left another legacy though. A strange son, who she came to be dependent upon to do all those physical tasks for her. A son who could be an embarrassment though. An individual given to bizarre fits of rage, where he could punch through a solid door, break the furniture, even smash his computer screen.  How do you explain all that yelling to the neighbours? A carer, who could not keep quiet in meetings, who had embarrassing outbursts at public functions. An individual whose own brother would not accompany him to the shops in fear of the consequences as he loudly berated the shop for this or that. As the computer era dawned she bought him laptops, very expensive and rare at the time, portable tape recorders to aid his difficulty with the written word.

What was his functioning level in the community? Clearly in the orthodox social domain, very low, a liability, but when she died, he went back into further and on to higher education where he is pursuing his doctorate now. Intellectually very high functioning, yet still an embarrassment at public meetings.

It becomes not a matter of how you define function, or even if you define function, but why?

The mother could have been described as physically very low functioning, in terms of self care; low functioning, but in the civic and social spheres she was very high functioning indeed. When she was interviewed for a position of considerable responsibility, one of the interviewers said to her face, that he had not expected the candidate to be so obviously disabled as she was, sitting in that room in her electric wheelchair with the impedimenta of wrist and neck brace, and shapeless fingers. He said had he seen her first, he would not have believed her capable of all the things she had done on her CV.

The son? Well he became one of those "shiny aspies" didn't he? But then he nearly did not get that far. When his mother died, his structured and goal oriented life fell apart, he nearly took his own life because the strains of trying to direct it for himself were overwhelming. What physically he did for his mother, became hard intellectually for him to do for himself without that world of constant prompts and timetables. He still struggles with it.  This Sunday morning he sits and types away, he isn't dressed, he hasn't shaved or showered, and he certainly has not had, nor will have breakfast, he is running out of food and will need at least to get some clothes on and get down to the shops while they are still open to get something he can put in the microwave. But still he types ..........

It's not about functioning is it. It is about appearance, prejudice, jumping to conclusions. A functioning label that is built around whether someone is verbal, or non verbal, has a low IQ or is gifted, doesn't tell you a lot about the person at all. It tells you only about what someone else considers as important.

For the shiny aspie, it's not important to him right now that he eats, or gets dressed, he has something else on his mind.

My last post was about Amanda Baggs. There are some people who will have fallen out with me for even raising her name in the same sentence as "controversy". People who I have worked closely with even.

Well I've not entirely finished yet. The story I have posted is a true one, and it doesn't take too much guesswork for those in the know, to know who I am referring to.

During a time some people will have forgotten, there was the usual flurry of negativity coming from "Autism Speaks" there was an appalling video "autism every day" and not the only one, which focused on only one side of the picture of autism, much as one could focus if one wanted to only on one side of the life of the disabled woman I have instanced in my true story. You could focus on her pain, her frustration, her inability. But that was not the whole truth was it?

There was another piece doing the rounds, purporting to describe from the inside the life of a "low functioning" autistic boy. That wasn't truth, it was written by a so called "high functioning" motivational speaker, not even of the same gender. It was written for a reason, as a piece of propaganda I am sure.

Well somebody constructed a clever response to all that negativity. A serious of photographs, purporting to show one pitiable reality. Then the photographs were shown again with a different set of captions, showing another. That site was initially anonymous, The photographs did not even look like the photographs of a well known person who had a web site previously. You had to think about it to even suspect who it was.

Well it was Amanda Baggs, and the site was called "Getting the Truth Out". eventually the authorship of the site became common knowledge.

There was a danger though in that presentation, that the first set of pictures was as deep as anyone would go. Stark Black and White photographs, a parody of much classic charity poster advertising of the kind covered in David Hevey's seminal photo essay "creatures that time forgot"  People might believe that the object of the photo series was to invoke pity, the opposite of the intention. Well indeed that is all that some people did see, they constructed there own realities around that, and then there were the follow up videos when the authors identity was known. I foresaw that, and the gloss put on it all by CNN, it was out of control.

I made a video too, "whichever way you look at it, it's still autism" It also used pictures in an ironic way, it was all carefully crafted initially as a response to a "cure autism now" video, deconstructing the forced negativity of it, and concluding with the notion that different people see different things when they are talking about autism, they colour it with their own perspective no matter what. The parent sees the child differently to the child themself, and that is because they are both on different journey's at different ends of life, whether autism and disability is in the frame or not.

There will be no more comments on my last blog post. My answer to them all is here.

Stop trying to pigeon-hole people into functional categories - see the individual - realise their perspective on things is not necessarily yours.  Change is what life is about. coping with change is what can make it difficult. The mother I started out with was not always as physically incapable, her body regressed. The son was not always as "shiny" he progressed.

Motivations are what come from within, sometimes the author does not know what they are, but this much, you can be sure that if the author does not, no-one else does either.

The Amanda Baggs controversy

No links there, no pack drill.

I have been drilling down within this (what to outsiders is no doubt incomprehensible) controversy which has exploded on the autism hub.

There is, and has been for some time a lot of controversy over the veracity of Amanda Baggs.

Statement by Larry here. "I do not believe and never have that Amanda is low functioning"

Now the qualification for that statement ought not to be controversial because the definition of functional ability in autism is essentially a normalising dialogue, a socially constructed dialogue and when one withdraws ones "gaze" from autism and looks at notions of disability, impairment and difference altogether it is a nugatory or "piffling" dialogue.

I think I do need to come out here, and state what is, what I have said privately in other fora:

I first encountered Amanda in early 1999. You could say that was an exciting time as I was discovering a lot of things then with regard to this autism which I had been "framed" with.

I think the major condemnation I have seen against Amanda is a number of previous tentative diagnoses including (yes wait for it) the unmentionable Schizophrenia.

Well lets get real folks. Those who tend to condemn in all probability have never had any contact with mental health services, they do not know even what "diagnosis" means or what many psychiatric "survivors" will tell you, that you can see a psychiatrist who will diagnose you with x and a month later you can see another one who will rediagnose you with "y"

Yes it has happened to me too.

There is a lot of stuff out there, if you know where to look for it, that replicates what Amanda had to say prior to my first encounter with her.

But then look at it properly. I am not sure what I am going to say does a lot of favours to Amanda, but you have to look at age in this. I was a teen once, though looking at my grey hair and whiskers you would find it hard to believe.

I have had the good fortune to watch other autistic teens grow up and mature.

Anybody, think about it. If you ever kept a diary when you were sixteen, whether you would want to see that published now?!

Amanda, has made some big mistakes (as I see from my perspective)  I won't go into them all, I commented at the time, Amanda is aware of what I said. Heck it is no worse than what I have said to Michelle Dawson, or Ari Neeman particularly Ari Neeman over the same naivity with dealing with the media.

Media is one of my specialties, I would know about it. I have myself been accused of not speaking to the media, but I had good reason to distrust.

Some of the fallout amongst the erstwhile autism hub involves personalities. Lets not deny. It involves those who do or do not support Ari Neeman (the young pup who ought not to teach his elders how to such eggs) or Michelle Dawson (whose knowledge of the philosophy of science is distinctly lacking) or Amanda Baggs, who came out of California where those big trees grow, need I say more (ironically)

Beyond that there are all the "ace faces" out there who might turn out to be no more than bell hops - (this is a reference to the movie Quadrophenia BTW)

It's not about personalities, it is about diversity and the right to be.

Larry Arnold is the ultimate clown king in all this. I learnt (was forced) to take that role. Licensed folly. It's a precarious tight rope I can tell you.

There are no plastic saints or Icons in this autistic world, all of us are flawed and human. There is so much crap being exchanged right now, condemnations, accusations. When it comes down to it, it is not about the bigger picture, it is about selfish perspectives and self constructed holier than thou bullshit. Yes on every side.

Who has the guts to admit it though? When we all do, then we can move on......

Damned if you do, and damned if you don't

It will not fail to have reached many fellow bloggers notice, that yet another internecine war has broken out between hub and ex hub posters, never mind the long rumbling war between hubsters and the age of autism, and their associates.

Perhaps it has come time to call a halt on the hub and for each of us to go our separate ways, as the criticisms I made of the hub, when I was the subject of an internecine war still stand.  Indeed the existence of the hub does not seem so much to serve its stated purpose, as to provide a magnet for malcontents to characterise all whose blogs are associated there as one mind in group speak, when it is quite clear that the opposite is the case and that a variety of shades of opinion and involvement in any movement are covered there.

It has to my mind only encouraged the building of a straw man out of a rallying call of "neurodiversity" which like the term autism itself means different things to different people.

I for one am ashamed to associate with a notion of neurodiversity which is not inclusive and does not include all of the work that is being done outside of the limited coverage of the internet. The origins of the word, and it's various applications are badly misunderstood and sometimes deliberately so.

Fortunately those who use the word pejoratively are in the minority in that wider world beyond the narrow focus that leads one to think that ones blogging "cronies" are the whole world. It is an unfortunate illusion that any clique allows to foster.

I can well see why so many people opt for anonymity, and indeed I can see why so few (if any) respected academics in the field are seen to put their wellies on and enter into this mire.

I generally wish I had left it alone too, now.

Given a series of recent events that occurred before this latest war broke out, I think I shall have to add a standard disclaimer to all of my  posts from now on, showing that a comment on any particular blog is neither to be taken as condoning nor condemning what ever else is on the blog, and whatever else anyone has posted except where it is in direct reply to any specific point.

The insults have to stop, they do not contribute either to good order or good debate.

From now on bloggers who merely wish to fight proxy wars on my blog, using inflamatory language, will not be allowed. That's not censorship, that is common sense. Besides I have legal and professional obligations not to publish such comments.

But of course whatever I do, someone will damn me for it.

Not what you expect, but then it never is.

I think I may have almost missed the boat for this "blogging against disablism day"

For a start off it is ableism, cognate with racism, not disablism, whoever contorted the language to come up with that one?!

But having got that particular semantic horrorshow out of my system I will procede with a poem, not even a new one, it has a date which is it's title  - “Be not afraid” - 9th Oct. 1980

Yep you see impairment is not just for Beltane, it is for life :)

It's a poem about a different way of seeing, the way of the migraineur:


After an image, imagination, rash-null explanation.
Apparition, Shun the lot!
A walking-waking dream or not?
I saw out a window, twenty mile and more
Reduced to thirty yards or so!
Seen, scene from my fabled Film.
And wake to crooked consciousness,
An overbearing bent bathroom.
And where wallpaper was,
A super-fluidity of flowery-field
The green-grass glare, an insane painting pattern
Like an early episode among -
Galactic collection coloured red...
If satan had a hand in I'd be shocked
As if in recollection not so strange as it all seemed,
It was another vision,
Serenity returned a day.