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.

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.

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.

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.

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.

Five and Four make nine

Just as the 29th of October will be the tenth anniversary of my diagnosis, tomorrow (the 26th as I write this) will be my 54th Birthday, and I recall some problems during my 53rd, not the least I demonstrated how innumerate I am by adding 5 and 3 together to make 7 :(

Oh well this last couple of days has not been too brilliant either. Yesterday I managed to scrape the paintwork on a parked car as I tried to manoever my tank of a 4wD into a tight parking spot in a supermarket, I thought I was too close to the car on the other side and when leaving more room for that one, managed to catch the side of the other one with my politically incorrect bull bars.

Oh well I don't know what that is going to cost to put right, but I expect a phone call at any time to tell me how much I owe for a paint job. Just when I am desperately short of cash as it is.

At least I gave the car owner my proper address and phone number, but not everyone does this, as later in the evening, (I presume it was overnight) I seem to have fallen victim to another motorist who can't judge distances, as I got up this morning to discover my door mirror had been smashed against the side of my door. I am not even sure I can get a proper replacement for that, I shall have to fix an odd one, like I did on the other side, (that's two of them gone now) but I suppose if I do, they will at least match again. Though it is exceedingly annoying to have to drive out to the only sort of place that keeps suitable mirrors in, and then fix it on.


Apart from that my video experiment is very close to launch. For all of those who filled in the first questionnaire what must be more than a year ago, and have watched for any signs of life, it will soon be so, after my supervisor gives it the final approval.

Never the same water twice

October 29th 2009 marks the tenth anniversary of my diagnosis.

Much water under the proverbial bridge, and I question whether I am the same person I was in October 1999 (or any other time for that matter)

Well in one sense I am. I am a continuity since childhood of certain characteristics, physical and neurophenomenological that govern the way I react to the external world and the way it will react upon me. However in another sense because the world moves on and one cannot step into the same river twice I am not the same. The environment one lives in, the circumstances one finds oneself in, all go toward moulding the person as surely as the set of characteristics one has been dealt to begin with.

Not all of the times in those ten years have been good ones, and my blog is also full enough of bad times when I have felt really bowed down by circumstance.

To begin with ten years ago I was much shaped by those circumstances, still reacting to the death of my mother, and the personal misfortune of finding myself after a failed business venture on the job market, heavily disadvantaged by fortune and circumstance both.

At the time my diagnosis came as a relief, it got me off the hook so to speak for various things which I had been 'taught' by society and my peers were character flaws, which if only I tried hard enough I could work on.

However at that time I did not know much about Aspergers syndome and autism, and I was on the first rung of my ladder of understanding. Much that was available on the internet, in books and articles was pretty negative about the impairments and limitations of being on the autistic spectrum. I sometimes felt like they were not describing human beings at all, and it was depressing, not only to be like that, but to be thought of like that.

Fortunately I had the experience of the social model of disability to guide me, so I did not fall into the trap that so many other have fallen into, of simply identifying themselves with the medical model traits of autism and internalising that as something real.

I thought this is not the be all and the end all of autism, there is much that is not described, there is much that is unknown, and I will not be limited by the descriptions of what I can't and never should be able to do. More than just rebelling against that I had an inner desire to change it all, and I started with the NAS.

Now the NAS was not the same organisation of today, soon to be celebrating the passing of an autism bill. It was an organisation stricken by financial crisis and debt, and I expected that organisation, which still did not accept me as an equal to the parents who had formed it to do something for me to improve my position in society! Well 'no' that was never going to happen so I got involved. The rest is history.

I am a different person, as much as the NAS is a different NAS, and the field of study of Autism is different too, adults like myself have contributed to that, with our writings, our videos, our activism, as much as we have been research fodder for the scientists.

One thing I was never going to do though, was to become a self narrating zoo exhibit, to merely parrot the impairments and relate them to my 'sorry' state. I have to own that Jim Sinclair, was a big influence there. I wanted to change things, and if it meant going back to college and University in the process, to gain the knowlege and the qualifications to be taken seriously then I was going to do that, and did, never mind the financial cost and the struggles that took in social terms.

Would we be able to celebrate the passing of an autism bill, had I not taken the actions I did when I did? Who knows? I think if there were to be a bill without my having existed on the autism stage it would be very different, more swayed by the kind of garbage that comes from Autism Speaks, with the emphasis on 'defeating autism' and useless research that is leading in the opposite direction of anything that is of practical benefit to the here and now, never mind the future.

Perhaps I did make a difference, and for some terminator to go back and change history so I did not exist might mean it neverwould have happened, but then again I think I can safely say that for everyone else that had a hand in making these same changes it has been a team effort, not only those on the inside of the tent pissing out, but all of the sometimes raucous mob on the outside pissing in.

Perhaps now it is time for me to be on the outside pissing in again, as the air inside the tent gets foul after a while not to take a metaphor too far :)