Sunday, November 29, 2009

"It is a tale told by an idiot, full of sound and fury, signifying nothing"

If I have had it bad I should look at my dads life.

Before the second world war he had already lost his own dad, a drunk, who drunk away the profits of his bootmakers shop. Before long he was to lose his mother too, a diabetic. He always blamed himself for her death, because her last request was for a bottle of stout, which my dad duly delivered to her. He was sure it killed her.

After that he spent a life on the move between his elder sisters and brothers, heavily disrupted by the war.

By the age of 12 he had already left school, so many children were being evacuated he figured they would never notice if he stopped going.

You will notice he spent his war in Coventry, and experienced all the bombing and the Blitz.

I recently saw a play at the Belgrade Theatre entitled one night in November which tried to recreate those events. (curiosly I was a refugee myself when I saw that, having been temporarily driven out of my flat by fire)

Well my dad was driven out by a bomb. Later on during the war he got into uniform for the first time as a boy messenger for the fire brigade, dangerous work, and by the end of the war he was called up and posted to the middle east, where during the troubled post war era he served in Palestine. It wasn't any different then, the equivalent to a posting to Iraq today, he had to carry a concealed sten gun whenever he got any leave, and was once mistaken for a terrorist when he forgot the password to get back into camp.

To top it all, he was probably autistic, one of us, Is it any wonder he turned to drink?

I am not making any casual retro diagnosis on my dad. I know sufficient of his character, his reactions and bearing to see myself in him, and he had enough contact with the psychiatric profession in his life, with two stays in mental hospitals.

His diagnosis eventually was personality disorder, but I think had he lived a little longer to see my diagnosis, he would have been rediagnosed with AS.

In any case he did not realise what a stigma personality disorder was in itself, but insisted he was not mentally ill.

My mum on the other hand did not understand these distinctions at all, she could not understand why he acted the way he did and called it mental illness.

She used to tell us children there were two daddies, a good daddy and a bad daddy and that the bad daddy could not help himself, while she put up with the beatings and the smashing of furniture and all the other fun of the fair that made up our normality.

I later joined in the smashing of furniture myself, why not, it was really crazy sometimes with things flying through the window, including an antique 'marble' clock. I had a recent conversation with my brother with us trying to recall who threw what and where :)

From that you can conclude that my mum had a difficult time, never mind what later became of her when she contracted rheumatoid arthritis and finally left him, to be looked after by me, of whom she was also sometimes afraid, because I had not given up the furniture smashing habit. We argued over many things, including disability politics, and when I got worked up I went out into the garden and just broke up whatever was out there, (helped to get it into the bin anyway)

My mum feared I had the same 'disease' as my dad. After some dealings with psychiatric services I decided to leave that alone, and never sought any more "help" until after she died. I was wise enought to fear the sort of lable I could end up with.

Well my dads behaviour was none improved by drink. He was a nice enough bloke when sober, but once he lost his temper, it was off down the pub, come in rolling drunk and prolong the argument all night sometimes or until he became insensible.

Now I seem to have painted a very unpleasant picture of my dad, but the truth is more complicated than that.

He was fundementally a decent bloke, he was just dealing with forces he did not understand. He was well liked by his workmates, although he hated his work, it was a noisy smelly factory that caused continual stress because of his sensory sensitivities, something that allowed him to understand me somewhat better when I reacted spectacularly to things like the toilet flush, or the vacuum cleaner. He took my side in school disputes explaining that I was reacting in pain to noise and that I could not help it.

He was a singer and a musician, although in frustration he more than once smashed his instruments (he ought to have done that on stage and one upped Pete Townsend) and he was a keen photographer, my best days with him spent cycling and walking in the countryside with a camera, later spending the evening in the dark room developing the results. At least that gave my mum some temporary peace from the both of us.

So what can I say. Is domestic violence forgivable? Well probably not to the extent that it should go unchallenged. My mum later worked at a refuge for 'battered women' as it was termed then, she turned that adversity into strength and that formed the groundwork of all her later voluntary efforts, deep down she loved my dad, they were just incompatible and he was thoroughly conditioned by a false expectation of social norms to understand what domestic life should be like. He had nothing to model it on, but the movies, and to him the man should be master in his own home, and was entitled to chastise his wife, a fundementally victorian morality.

His dad was a Victorian, who spent his first 25 years in the reign of Victoria an exact contemporary (and companion) of my great grandad on my mum's side of the family. This is his picture, he looks quite avuncular, he was probably drunk at the time, rumour has it that he was drunk at my dad's christening, he would have given him his own name 'Benjamin' but all he could muster was Ben,.

Even before he married my dad was known as eccentric and difficult, my mum's parents were against the marriage but they relented and she was married at just age 19, hardly experienced in the ways of the world, is a disaster looming of titanic proportions.

What can I say about my dad's drinking? I hardly know anyone who drinks at all who does not drink more than the miserly recommended limits at least once or twice a week, I am no example to criticise in retrospect, but it has to be said my dad took to drinking as a refuge from domestic life

From his perspective he could not understand women, he had not had much experience of them before my mum other than his sister's dominating influence in his life. His first sexual experience was with a prostitute in the army, something my mum did not forgive in him when he revealed that during one particular drunken row. There are more dark secrets there, of marital infidelity. My dad could be a jealous man,and was jealous that other men (his friends) found my mum attractive and easy going. My mum found friendships in general a lot easier than my dad, people just liked her and some more than that, she had been accused often enough that she the accusation became reality in the end, but then by that time the marriage was all over, and my dad was also looking for a replacement in bed.

The army was his only stability, and he wanted to run his home on army lines when he got married, and my mum was too independant for that she had her own ideas.

Things could have been very different, if they both had a greater understanding of things that simply were not known then in the foreign country of the past.

My dad had a life every bit as difficult in it's own way as my mum's shortly after they met he spent months in hospital recovering from Meningitis, illness was no stranger to him, he had had childhood diptheria too.

My mum also had a disrupted family life, during the war she had been evacuated to no less than 3 different locations, and ended up moving back into Coventry with her Aunt because there was no room at home, I don't think she had much idea of what family life should be like either and was somewhat mesmerised by my dad's charismatic mask. He spoke foreign languages (Arabic, Polish and German) he played in Jazz bands, was a friend of Ronnie Scott , George Melly and Humphrey Lyttleton, going down to London and playing on the river boats where:

"Everybody knew everybody. We all squeezed on to a little boat which chugged up-river to Chertsey. At the locks there was jiving on the tow-paths. Beryl Bryden swam to enthusiastic cheers. The music and the moving water, the bottled beer and the bare arms, melted into a golden haze. The last defiant chorus from the band as the ship turned in midstream before heading for the pier in the warm dusk sounded really beautiful". and seemed to her to be so sophisticated." (George Melly)
He seemed so sophisticated, and Beryl Bryden quite shocking as she recalled.

Well was it worth it? If it was not there would have been no me here to tell the tale!

All in all my dads life was a tragedy of Shakeperian proportions, such unfilled talent that he never had the breaks he deserved and wanted more than anything that his children should have a better life than him and never have to endure meaningless toil in a factory. We were part of the tragedy too, because neither of us suceeded at University in his lifetime, he saw us becoming increasingly distanced from him, and his final diaries some of which I have read, others which my brother has and destroyed because he thought they would be too painful for me to read, tell of his alienation, and his fears for me, that I would never be able to make it in the world of work at all, I would never marry and would end up on the streets.

I could go back and say that for all I know his Dad led a tragic life too, there are suggestions of family difficulties going back yet another generation, and it is of course impossible to speculate what traits of autism, my grandfather carried, suffice it to say, that among his six children, my dad was not the only odd one. Maybe I shall save that for a later chapter ......

Saturday, November 28, 2009

On the psychiatrists couch

My recent classic PTSD reaction to a recent posting on Facebook, bringing back painful flashbacks of something far in the past, has given me to much reflection, and my blog is about to take a somewhat dark turn as I confront and try to out the many demons of my childhood that still have the power to possess me with fear, shame and emotional pain.

Now this is still going to be an autism relevant blog, but what it will not be is a blame the parents blog, because I know that ones childhood takes place in a social context beyond the family where people are effectively conditioned by class, upbringing, education, media and general cultural ethos into a set of beliefs embodied in the zeitgeist.

It is my belief that many parents turn to biomed as a reaction to the evils of the Bettleheim era, and to many genetic implication is still a form of blaming the parent.

Well I am also aware, and have been since my diagnosis that there are a variety of perspectives on everything. I see it from the inside in one way, my parents saw it in another, and people outside the family looking on at my parents often difficult marriage saw it another, taking sides as they saw fit.

That is why it is very difficult for me to embark on what I am about to do.

Some of it is already hinted at in the autobiography I provided back in the days when a geocities page was the thing to have. I wrote that post diagnosis as a personal journey into my past recontextualising in the light of what I had recently learnt of myself. Perhaps I was wrong to do that, but it is too late now that so much of my life is already out there for people to pick at and come to there own conclusions, coloured by whatever experiences they have had and how they look at the world in general.

It has been the basis of a disagreement I came to have with an author, who gave my web pages added publicity by including material from them in a book. I felt later that there was a danger that by saying some things about my dad that could be more wideley read than the internet, might rebound on me because I feared the hostile reactions of people who were my dad's friends, and who had seen him in a more sympathetic light than I was forced to view during family rows and disputes.

I mistakenly believed by allowing my words to reach a wider audience that might enhance my prospects of following the likes Of Donna Williams, Wendy Lawson, and Lianne Holiday Willey and becoming a writer myself.

Well let's just say I was naieve at the time, and was mistaken. I have since come to the conclusion that if I have any ambitions as a writer left, it is to be a scholarly writer and not a sensationalist autobiographer.

Which is why it is going to be so awkward now to turn back to some of those things in my childhood, inevitably related to my autism and other 'disabilities' or 'difference'

To deal sensitively with the outside as well as the inside perspectives, and not to lay the blame on anyone for my parents sometimes rocky marriage, or the still traumatic events of my schooldays which have been revisited to me last night.

These things happened, and I cannot be silent about them forever. I make this turn in order to excorcise those demons.

The link from today's blog may be puzzling some, what it has to do with the Coventry Music scene, well the article mentions includes a picture of my dad lifted from my former geocities (RIP) web site, which shows that local people, my dads friends amongst them have read it, and I feel sorry for what I said about him and want to make some ammends now, by attempting to dissect the whole social context of what led to those difficult times without invoking the whole sorry farce of blame the 'aspie' husband.

Sunday, November 15, 2009

Another ten minutes, another 9 years

Here is a companion piece to "ten minute roughcut" I made all of two years ago now.

This is also set around an NAS AGM. At the time of "Ten Minute Roughcut" I recall the board was just being introduced to the various top candidates for Chief Exec, of whom Mark Lever was chosen.

Well it is altogether 9 years since I went to my first NAS AGM, and I did not know what to expect from the organisation. It has changed, but I am not altogether happy with everything as will become apparant from the clip.

In reply to Socrates, later this week I am going to the launch of a new NAS branch in Coventry, a branch formed by autistic people, that was unconscionable 9 years ago. I have always refered to the NAS as a dinosaur for a very good reason, it takes a long time for anything to get from the head to the tail, and some branches are very much the dragging tail of the dinosaur when it comes to dealing with Autistic Adults. However I would like to think this new branch might end up shaking the beast from the tail end too.

Linking Socrates' concerns back to everyday life and experience, some branches of a big chain like the co-op give worse service than others, however the one cannot be responsible for the other, the structure is loose, and in one way what happens in branches is the responsibility of the branch not the body as a whole, although of course it is shamefull if the activity of one branch causes people to reflect badly on the whole.

We do have a great deal more parity in the organisation, gone are the days when the constitution effectively limited our numbers on the council because we were unequal members, however what people did not realise at the time, the restrictions against non parent members were created to keep professional influence at bay.

Well I feel the NAS is about to take a step backward in that respect, so far as allowing a potential professional advantage, which has already had the unexpected and probably unintended step of ending my tenure on the board.

Here are my usual hotel room ramblings and my question to the Chairman, posed the following day.

Judge for yourselves from the answer.

Sunday, November 08, 2009

Danger and Fear

I have a confession to make, I like to read travelogues about danger and hardship, especially from the comfort of my armchair. I was recently googling up the Yungas Road in Bolivia, reputedly the most deadly in the world and I can believe it. I am not at all sure I would want to risk driving it.

However it set me to thinking about perceptions of risk. Everyday we walk along pavements, sometimes by the side of very busy road where stepping out would be certain death, the pavement may not be very wide, but do we think about it? I would hazard a guess if instead of the road to ones side there were a vertical drop of several thousand feet we would be stricken by vertigo and find the route much more difficult.

For what it is worth I have driven roads as difficult as the Yungas Road, there are loads of them in Wales, even narrower in parts, the difference being that there is not the traffic, and not the same degree of sheer drop. Mind you a couple of hundred feet, or a couple of thousand, does it make that much difference once you are off the edge?

Perception of danger is clearly relative, the picture at the top is not the Yungas Road, it is the Bylch y Groes in Wales, the two below are the Rhos Y Gwaliau on the other side of the mountain.

Below is the Yungas road and I know which ones I am going to stick to :)

And for good measure, added last night, me driving one of the Welsh examples.

Wednesday, November 04, 2009

A tale of two rivers

I suppose I ought to comment on the current topic of debate, the disapearing trajectory of Asperger's (syndrome, disorder, call it what you will)

I expect I could make all manner of historical comparisons and cite a number of sources, all of which I will subsequently have to do when I am writing up my research anyway. But (if I am allowed to start a sentence that way) I shall fall back into the land of analogy and go back to a geographical fable.

Once upon a time there were two countrymen, explorers both. One went away across the mountains to live in a foreign country but the other stayed at home. However each of them discovered a stream, the one who lived in a foreign land found that the stream got stronger and even though it went through a number of rapids on the wayit became a mighty river which he gave a name to.

The other explorer's stream seemed to meander on through deep woods and almost petered out. The explorer who tried to follow this stream was almost forgotten until one day a third explorer, familiar with the big river named after the first thought that neglected stream had water in it of a very similar hue and consistency to that in the big river on the other side of the mountains. This new explorer thought that the second explorer had been neglected and so named this newly rediscovered stream after him.

As time went on and more and more explorers followed these two streams, as they became rivers, down towards the sea, the rivers seemed to merge as they overflowed into the flood plain at the far end of the mountain range which divided the two countries. They seemed to merge, and then seperate, and merge again sometimes leaving isolated ox bow lakes in the way that mature rivers are wont too. Indeed it became difficult to say whose river was contributing the most water flow. People argued as to which of the names given by the explorers the delta should be named after.

Then one day, one day, somebody decided that instead of settling the issue by following the streams down to the sea, where the river had become so wide it had lost all distinction as it merged with the tide, that they would try and follow each river to it's source.

At last they discovered why the waters were so similar. Because both streams had the same source at the watershed. One flowed an easy path down one side of the mountain into the country the first explorer had moved to whilst the other flowed down the other side through secluded woods until it emerged at the bottom of the mountains onto the plain shared by both countries alike.

It was the same water all along, and the explorers names? Kanner and Asperger.

Tuesday, November 03, 2009

I feel honoured

I have made a number of presentations before, at conferences both great and small but never as a "keynote speaker".

That is about to change, I have actually been invited to be a keynote speaker for a conference to be held in Manchester next year, entitled "Theorizing Normalcy and the Mundane", which is a disability studies conference.

This is some step up for me, and all the more inspiring to me because I do not have a single academic qualification in that field at all, just a history of submitting a number of challenging papers in a genre I actually feel very comfortable since for all it deals with "theory" all of that theory comes from a very pragmatic background of dealing with that stuff and dealing with people who deal with that stuff, and dealing with people who administer that stuff in social services, and education and employment.

As Bev has explained in a wonderful graphic way this theory is actually a very practical and real way of dealing with the effects of 'impairment' or 'difference' whatever you call it.

Those who like to deny that find themselves to be in reality part of the same machine that creates the mythos of 'disability' and in effect they are colluding with there own stigmatization.

I shall be tackling the rather unfortunate consequences of an inclusion that is an empty policy without accomodation, negating the notion that one can ever be indistinguishable from ones peers (as that is meaningless) and challenging Wolfensburger's concepts of 'normalisation' and social role valorisation. It's all real world stuff and about the everyday crap that is served up in schools all over the country, indeed over the world, and in the false notions of ABA which in effect are only an extreme of the general ethos of a 'hidden curriculum' of conformity in education.

Dealing with how position and attitude affects the language that is used to describe identical situations but how it puts a pejorative and stigmatising emphasis on the 'deviant' subculture.

My detractors are going to hate this of course, hate it even more because this is not even an autism conference, although autism does inform my perspective, the points have generality beyond that.

So blow as hard as you like, I was not chosen to speak because I have nothing of value to say, and neither because I lack any of the theoretical and practical background to put it into context.

Monday, November 02, 2009

Ready to go:

This is a repeat of my post to my other blog and also a reminder for those who signed up for my research a while back and have forgotten about it. You will be emailed soon, or if you have changed your email since then and don't recieve a copy by tommorrow morning, let me know and I will resubscribe you to the research mailing list.

By the end of the 2nd of November (GMT) the online video experiment will be live. Those who are signed up to the mailing list will recieve a message concerning the URL and mirror URL.

I will also be launching an appeal for new participants as well, who will need to fill in the initial questionaire which details I will also publish again tommorrow.

Following this there will be an appeal for NT online participants (as a control group)

There will also be a version of the AQ/EQ test online which participants will be encouraged (though not compelled) to complete. Completion of the test will not be taken to be an endorsement of approval of the ethics or methodology of the test.