Sunday, December 28, 2008
Maybe someone out there will have a better new year. For my part I am glad that the big Christmas disruption is over, it takes some time however to get back into a routine, and indeed to address many of those issues that have not gone away in the meantime.
I intend to have one last fling while I have a hire car, one journey into Wales is not enough, I am going back, but this time to the South before the year is out. Be warned, there will be photographs.
Friday, December 19, 2008
Here is my Christmas Card. (I am not very good at posting them out IRL) and below is a video cobbled together out of something else which probably is closer to the mood I am in. It's the winter, it's normal for me to be feeling down.
"Into my heart an air that kills
From yon far country blows:
What are those blue remembered hills,
What spires, what farms are those?
That is the land of lost content,
I see it shining plain,
The happy highways where I went
And cannot come again."
Sunday, November 23, 2008
Well it is not the worst that could happen, no indeed, something worse has happened.
I was getting over it, ready to move back in next week, but I have just received a very disconcerting email.
Trivial for some, but not to me, because my research and hope of making something of myself academically has been the main thing that has been sustaining me through this current bad patch.
Well not any more because Research Autism has turned down my funding application, and frankly I do not see how I can continue without any funding at all.
I guess I ought not to say what I think of them at this current time, anger is never a good basis for a sensible post, but I will have a score to settle, that is for certain, how I go about it with common sense is another matter.
Well I do obsess a little about the significance of dates and numbers, and this is coming up to the tenth anniversary of my most determined desire to kill myself.
I wish I had, because all that the intervening ten years has held out to me is an empty promise.
Terra Incognita, the unknown land, that far country from whose bourne no traveller returns. Well the bourne beckons, and December 25th will be decision day, at least I am staying that long in this world, but really, I am not sure I want to be here next year, because I don't think I am going anywhere but a life of poverty and underachievment.
Did I survive for this? who knows what is written, but running up the down escalator is my progress, not otherwise.
Good job I am not drunk isn't it, but I still do have things to complete never mind how I feel tonight, and perhaps it is that determination that is the only thing that will keep me going.
Gawd, what a whinger, shoot me now eh :)
Wednesday, November 12, 2008
If you follow the link you will see why.
Having limited internet access is what really sucks right now.
Well I am comfortable enough in B & B for now and I have recovered the things that are important to me.
All will be well in the long term, but in the short term, it is difficult for me to maintain my various responsibilities, however it is important to me not to pass my misfortunes on to any one else and let them down with regard to stuff I had arranged to do with them.
Talk about fifteen minutes of fame, our block was headline news taking up two pages in the local paper yesterday.
More to follow when my situation is back to normal, sorry no video of the fire, safety comes first, but I hope to post a video diary or something on youtube :)
I have never looked smarter BTW, had to buy new clothes cos I only had what I stood up in, which smelt like a barbecued kipper.
Anyway my flat is relatively undamaged as I was furthest away from the seat of the fire, but if the fire brigade had not attended so promptly it might have been a different story.
The sh*t comes from dealing with all the bureaucracy you have to go through just to keep any kind of roof over your head.
I am through the worst of it now and have been able to go back and recover some essential items from my flat including my flute, documentation (which you don't even exist without these days) and my precious video hard discs which I was working on when the fire broke out and had to abandon.
Tuesday, November 04, 2008
The building is of course threatened with demolition, never mind it's historical significance, It was designed by Frederick Gibberd and is actually the prototype for Liverpool Catholic Cathedral, in terms of a circular structure with a lantern.
There is something unique about a circular market and I know of no other like it.
Monday, October 27, 2008
Friday, October 17, 2008
Yesterday in what I suppose must be a moment of madness, I submitted my DVD “Whichever way” to an assessment clinic at a local Institute of Videographers exhibition.
I was there to check out all the new equipment which I cannot afford, though fortunately I will be getting some editing equipment out of my Disabled Students Allowance as it is essential for my studies.
Anyway I told them from the beginning that it would be “different”
“Doesn’t matter, we have seen all sorts” the guy said.
However it was apparent right from the outset that it was to them jaw droppingly different, being as they are used to wedding videos, narrative stuff and that sort of thing.
Firstly they criticised it for being too wordy …. Well it is a lecture after all, but when I got to the end, the part where it is pure visual, they said they said it could benefit from a voice over, you can’t win, I took the voice over out on the advice of an artist who said I did not need it, the pictures said it all.
Then they criticised me for holding the same shots too long. Now hold on a minute, I have seen Tony Atwood’s videos, there is one camera angle throughout, not uncommon in a lot of straight to camera material that still exists in the genre. If I had stuck to the conventions of the action movie and never held a shot for more than 5 seconds the whole piece would look crazy. It is a lecture for goodness sakes, aimed at a reasonably literate audience, not action junkies with the attention span of a goldfish.
Then they did not understand some of the cut away shots that were there. Well I said, you are not supposed to understand them, it is a video about autism, some of the cutaways are meant to invoke a state of cognitive dissonance.
They criticised my delivery, reading from a sheet, well that was a deliberate Trope, that is to say, I deliberately made no attempt to engage the potential audience in vicarious eye contact, this is about autism after all.
Worse than that they suggested I ought to have got in a professional voice over artist.
Well again I said, what would be the point of that, I am autistic, there would be no authenticity you would lose all the voice inflections, and prosody of an autistic presenter, it might as well be someone else’s documentary if I did that.
They said that I could have cut out a lot of what I said, dumbed down.
Well again the point is to deliver a complex idea, a mini thesis as it were.
They obviously have not seen a great many educational videos, which would make mine look considerably more sophisticated by comparison.
I give up, NT’s want to see what NT’s want to see, they don’t care about the lyrics of a song so long as they can whistle the tune, they are not looking for depth and sincerity.
Maybe it achieved something, as I took the autism out to somewhere it was not expected.
It is interesting by contrast that many autistic people, whose opinions I have sought are seeing something else in the video, they are picking up the message of the graphics, and cut-aways and not remembering the text.
I can’t win but this in a way was a useful experiment, an adjunct to my research in fact, so far as it demonstrates anecdotally at least that there are differences in the way in which autistic people decode and understand video, what they are attending too.
Well I know that the video deals with a very difficult subject and one that is not popular, a subject I have been dealing with since before Stuart Murray wrote his book I might add, he will have seen the video first. “Outside In” which deals with a more conventional perspective easily outsells it. I can’t force NT’s to listen to the message I want to give them, and so often it has to be sugar coated and wrapped up in what they want to hear before you tell them it ain’t necessarily so.
You can bring a horse to water but you can’t make him drink, and I think sometimes trying to explain the rich beauty that can be seen in autism and that comes from autism, is the equivalent of trying to teach poetry to frogs.
If you are interested in a more general overview of the kind of videos I make you can visit my YouTube channel, it seems that the most popular is me playing the flute, maybe I really should pick it up and play it during my presentations after all.
Wednesday, September 17, 2008
Now a year ago at the same time as I began my swimming lessons I embarked upon my doctorate and this weekend will be addressing an international conference and giving a way better performance than the token autie, Mr Stephen Shore I am sure. (at least I acknowledge that it is performance and I will entertain as much as I enlighten I hope)
However that is less of an achievement to me than my achievement in the swimming pool today.
All that I have done of course is to have achieved the basic standard that any 11 year old is expected to achieve and forty years late at that.
Well if anyone who attended Finham Junior school is reading this, A couple of years ago I met a former schoolmate who remembered me as the boy who never learned to swim.
How anyone learned to swim is actaully beyond me. For years parents raised money for what seemed to be a magnificent project to build a school pool. However by the time they achieved their aims the pool was nothing more than an open tank between the playground and car park.
We boys did not even have the privilege of a changing room, because the architects only built one, and that was reserved for the girls, we had to change in a corridor, and every week march barefoot in whatever weather across the tarmac playground to this open tank.
If that was not bad enough I was put off swimming for life by a teacher whose reaction to my reluctance to duck my head under the water was to hold it under.
Never mind that no-one ever appreciated the other difficulties I had with swimming namely a dyspraxic lack of co-ordination.
Well in my next school at least we had the luxury of going to the simply huge "olympic pool" in town, but by that time the damage had been done, and increasingly nobody bothered with the slow learner so I was sidelined, and gave up swimming as soon as I was able to.
What a loss that was as it is now something I really enjoy.
Friday, September 05, 2008
I decided to stay an extra day in the accommodation so I would not be so tired, to catch the train tomorrow, and since there was no meal or anything provided I decided to use the kitchen, to make myself a pot noodle, to stave off my hunger for the evening.
There were a couple of other delegates who were staying overnight too, and they were asking the usual questions, what was my research about, where did I come from etc.
Anyway there was guy who was staying there, by the name of Volker Schönwiese from Innsbruck University who said he came from Austria. So naturally I asked him if he had heard of Hans Asperger. Not only had he heard of him, he had been sent to his clinic as a 10 year old child
He was a wheelchair user, and when he was younger his family wanted him integrated into the mainstream school, but the authorities were resisting it, so he was sent to Dr Asperger for a consultation. Apparently Dr Asperger did all sorts of tests including an IQ test, and wrote up a report saying that children with Polyarthritis were extraordinarily gifted and he should be given all the facilities he needed to go to a mainstream school.
It was a white lie of course because there was no scientific evidence to support that notion, but it illustrates something of the character of the man back then, that he would write something like that into an official report to ensure that a disabled child got the same schooling as everyone else, and not the second rate schooling he might have got if he were sent away to a special school.
He said that Dr Asperger was a pleasant and very kind man. Sometimes it is a small world, and now I have met someone who met with Hans Asperger.
I have included a link to a pdf of Professor Schönwiese's presentation which may be of interest to people in the wider disability world.
Friday, August 29, 2008
One of my abilities is the ability to think in pictures though images is probably a better way to talk about it, as there is nothing particularly flat or two dimensional about this. I believe this allows me to easily create analogies and to be able to approach problems from different directions, that would never occur to someone who has to construct everything in words. Which part of the neurodiverse territories this comes from does not matter for the argument here. I want to give you a little example illustrating the fallacy of trying to find a medical cure for complex neurodevelopmental differences.
I don't suppose many of you have seen either a Stevengraph, or know the workings of Jacquard loom. A Stevengraph was an elaborate silk picture, woven on a Jacquard loom which uses punched card to determine how the threads are all woven together. To see one in action as I have at Coventry's museum in the past is quite amazing.
Anyway if we were to consider the Stevengraph as the brain, we could see that the punched cards are perhaps the DNA, and the mechanical maintenance of the machine, that keeps it oiled, the parts fitting together properly, and feeds in the different coloured silk could be seen as the epigenetic or environmental factors that also have to gel to create the flawless finished product.
Now imagine one of these wonderful artefacts gone awry, perhaps with rivers of red silk running through it, or sections of the picture missing. How can you fix it? If you unpick all the silk that ought not to be there, or attempt to patch in what was missing, you will not get the original intended picture back, it won't have the same structure, it won't be the same at all. And to try and go back one stage further and discover just where it went wrong, if it is in the punched cards for instance, to discover which particular extra holes, and which missing ones caused it all to go awry would be a nightmare.
Well a Stevengraph elaborate though it is, is a lot less complex than the brain. You can no more expect to unpick dyslexia, or autism, and get the whole picture back, than you can unpick the silk. There is no easy magic pill. You can't just oil the cranks and get it to run right, it's more than that.
That is why I do not believe in easy medical answers and quick fixes. The medic is akin to the mechanic, trying to keep the machine running, not the designer who punched all those holes.
Saturday, August 16, 2008
How would they have conceptualised me photographically and textually within their limited knowledge then and what would I make of it reading it all back today?
I do not know the half of it even. I know the pictures at least but the text is lost, and even so what would it say about me today, about what I am and what I became. It would have been at best an incomplete story.
I can write my own story now, though my past has to be written partly by reference to my parents memories (such as I remember their memories) as you can see in autobiography, but what did I "write" back then before I could read or write and how did I negotiate my existence and self in the myriad of situations I was placed in? How much would have been true and how much construction?
Who knows and we never do, I certainly do not. It is unfortunate that my parents are dead now so this debate cannot be had at an adult level with them, but my wasn't I cute ....
Friday, August 15, 2008
I intend to turn aside from the sociological rumblings around autism and back to what seems to be everyone's favourite topic in the blogosphere, which is the science of autism.
I will be presenting a paper very soon, which is rather critical of that science, and I expect the that those devotees who see everything in science as either black or white will be muttering to themselves "There goes would be Dr Larry again, with his sour grapes, knocking everything down but not putting anything in it's place" I had similar comments on my school reports when I refused to take the standard theories of the day at face value simply because they came with the authority of the teacher.
Well for once I shall defer a little to authority, to a more experienced researcher than myself who has doubtless read more papers than I know existed.
Incidentally it is an article of his that gave me a lot of pause for thought when writing my recent paper.
His name is Dermot Bowler, and he has not long ago had a book called:
"Autistic Spectrum Disorders, Psychological Theory and Research"
Published by Wiley in 2007
Now whilst his literary style would not gain him an A* pass in todays A level exams, I should be the last person to hold that against him :)
There are a number of chapters there where he reviews the current theories and the studies out without interposing his own position too much.
I would just like to quote a couple of pertinent passages from the final chapter of the book where he talks about the somewhat erratic nature of all the research so far:
"Failure to replicate findings can be explained in a number of ways. Either the phenomenon does not exist and the initial, positive finding was a random event. Or perhaps there were differences in the samples used; one study may have tested higher-functioning or older individuals while another used those with lower IQ. Many studies have small sample sizes and as a consequence have insufficient statistical power to reveal between group differences. Procedural differences may also yield different outcomes......"There speaks someone who has read many studies critically in the way they should be read, and he even includes his own work in that summary.
Further on he says at the very end of the book:
"The speculations in the last paragraph bring us back to the question of what it must be like to be autistic (See Frith and Happe 1999). Ultimately, the psychology of ASD must provide an answer to this question. But it must also provide an explanation. Readers who have made it this far (as well as those who have skipped straight to here) may be expecting such descriptions and explanations as well as a punchy take-home message. Without wishing to be unkind to colleagues in the field (or perhaps wishing to be unkind to those who often misinterpret their ideas), the message is probably that we are sometimes too quick to generate quick snappy messages and that we are often too uncritical of the work we ourselves do. Autism spectrum disorder is now known to be a set of conditions that should not be reduced to a simple dichotomy of presence and absence. When present the conditions are multidimensional and complex, and although they share the common characteristics of social impairment and repetitive behaviours (at least from the perspective of a typically developed person) they often exhibit additional features that are not necessarily defining features of the spectrum. Such complexity requires a more subtle explanation than a simple reduction to an absent theory of mind, a failure of affective appreciation, diminished sense of self of fragmented perception. The complexity of ASD requires us to take a more distanced view and to go beyond simply trying to find new ways of describing the fact that people with ASD are autistic Science is about the reduction of complexity to simpler sets of entities and processes that interact in ways that are controlled descriptions of the behavioural manifestations of ASD. The challenge that faces us now is to step outside our own narrow conception of the issue and to work out how they fit together and why."It is very pertinent for me to be considering that too, at a time when I am currently trying to attract funding to my own research in the hope that I will in turn not replicate the faults of all too many small scale studies.
Sunday, July 27, 2008
For the last two years Autscape has either been preceded by or followed by an operation, this year I have far more to worry about on my return :)
The trouble is nothing is without criticism, and this blog is not the place to rehash all of the various concerns about the venue, and about the ethos of Autscape, whether it should be outward or inward looking, been there done that and got the T shirt as they say. Suffice it to say I sometimes find myself in the middle, defending against unfair criticisms, but adding a few of my own. Nothing is ever perfect and we should always be striving for what is most important is that there are enough people willing to continue with it in whatever form the future dictates.The theme is Inertia and Action, and sometimes I feel I am too much stuck in the former, I know that when I get back I have to spring into action again and finish off all those half finished presentations I am due to make in September notwithstanding trying to wrestle up some money to continue my research, without which these presentations might suddenly lose their context.
Where the big money in Autism is, is certainly not where I am at anyway, educational approaches to autism get overlooked, and the new black is going to be cultural studies, where yet another strand of non autistic academics find rich picking studying all those funny autistic "tribes".I ought to have welcomed Stuart Murray's book on the representation of autism, but I do not, because well researched though it may be, it is part of a wider economic/social process of marginalisation which I have fought even to get a toehold in academia myself. Every book that is written about us by someone else is one less book written from within.
Why don’t I write a book myself, I hear the protest back, well it has to do with the fact that the likes of Stuart Murray, and Roy Grinker and dare I say it Kristina Chew (whose blog I nonetheless enjoy), have effectively colonised the genre wherein I would write.
Sunday, July 13, 2008
As followers of this blog might know, I recently had to give up my land rover, not by choice but by financial necessity. Well I can at least say I feel I have done something for the environment even if I would not have done it otherwise.
I see the news and it distresses me, story after story about melting glaciers, extinction of corals, and I am not distanced from that because I can see close at home the waste that contributes to it.
Gordon Brown was right that we waste too much food. I remember growing up before supermarkets when there were few brands and less packaging, I can't say I grew up malnourished or deprived because of that, any more than I was deprived because my dad did not own or drive a car.
Today I watched once again the world on wheels, so many cars and wondered where they were all going, and why, and just how this might look on a global scale. To be honest I was on a bus at the time, travelling across the city to a swimming pool so in a small way I am still part of that great daily trek that seems to put all other transcontinental treks into insignificance because of it's banality.
We can't help the way things are, because everything is organised around such treks and we can't avoid them, though at least I am using public transport and my bicycle more.
We are past the point of no return and with the coming recession we will all feel the negative side of our past exuberances there is no escaping it, and it is better to give up some things voluntarily in the interest of posterity than to have it forced upon us by inevitability.
I have turned off my hot water, I can't afford it, but at least I still have water, and that is going to be something that millions do not have, it already is. So much we take for granted is predicated upon continuing power supplies, the recent floods in Gloucestershire demonstrated how much we take for granted and how reliant we are on electricity for everything.
Back in the 1970's I recall the three day week and the winter of discontent, with regular power outages, but the shops still opened and did business, even the supermarkets, with tilley lamps and generators, but it could not happen now in this day of the swipe card, where even a disruption to the telephone lines means no sale.
Well in another couple of weeks I am off too Autscape, I am hiring a car to get me there, so whatever the price of petrol I am going to have to pay it and join the world on wheels again.
I might be getting away to autistic space, but that space will still depend upon electricity and piped water.
When I am done with Autscape however I will be done with that. I am going camping, roughing it, a simple tent, and no more water than I can carry, my bike will come in handy then.
My land rover was perfectly equipped for survival, solar panels the whole lot, trouble is it still needed an MOT and there you see it had to go because it would have failed. Unless you have land to keep one on, you have to keep it roadworthy and taxed. Doesn't seem fair, there was a time when my family were considering buying a piece of woodland somewhere, oh that we had.
Sunday, May 18, 2008
Note that I am just back from IMFAR and about to relax in a hot tub. When I have more time to do so, I hope to hotlink to papers, presenters, people and the issues I write about here, so come back in a couple of days to see how I have expanded this.
There are two mains things I can say about IMFAR, one is to give a report, or summary of the presentations, and posters, what my general impressions were and what I think was important and what was not.
The second, is to speak of my other role there as an advocate and ambassador.
During the presentations I was both, I wished to ask relevant and challenging questions of the science and the methodology where appropriate, but also at points to challenge the ethics where necessary. For example a study that was taking samples of CSF. I told the Dr behind that, that I thought that it was an unethical and intrusive measure considering it was not medically required. It raises all manner of questions about what is informed consent when dealing with minors and people who have impaired social understanding, heck I have been through the ethics meat grinder myself, so I ought to know.
Anway, I think the Introductory keynote speech by Frankie Happé was enlightening, she has come a long way from the article in Uta Frith's book, that 'dissects' the autobiographical style of those few published autistic authors there were back then.
She was questioning the single etiology of autism, and talking about multi axial conditions converging in autism. I challenged her to think even further to think beyond a triadic axis and to what it might look like if you forget the strictures of DSM IV TR.
There was an interesting 'round table' on diagnostic schedules, ADI ADOS, DISCO, Class’ battery etc. (can’t remember the name of the other one of hand, brain fade)
I raised numerous points about the inevitable restrictions of defining something and then only looking at what you define as within it.
The biggest challenge came on the second day with Geraldine Dawson’s key note speech. The Chair for that session was not allowing questions, so there was no roving microphone, but I was not going to be stopped from asking the question I wanted to, on ethics and respect.
I started by referencing an article in this months Journal of Autism and Developmental Disorder, which talked about autistic subjects and “healthy” controls
Did this not say something about an attitude towards ethics and a lack of respect that the science was dealing with real people who deserved that respect, as her peer researcher Morton Gernsbacher has pointed out.
What shocked me, and the audience I guess was not the answer, nor my mode of asking the question, as I was insistent but I don’t think rude, was the reaction in the audience from Matthew Belmonte, who immediately got up and bellowed that he was “tired of hearing that crap” and the usual complaint one hears about HFA’s not caring about non verbal and less intellectually capable autistics. Well that put me on the spot as it was difficult to avoid the proceeding degenerating into a 'Punch and Judy' show, but my response if I can recall properly was to say that I was misjudged by being automatically put into a ‘schema’, by someone who did not know what my involvement was across the whole of the autistic spectrum, a responsibility and duty that I have because of my position in the NAS never mind the many times I have challenged ‘Aspie supremacy, myself as hub members will be familiar I am sure.Anyway it wasn't my intention to disrupt anything, merely to ask an important question at a point where that ought to have been allowed in the agenda.Whatever, it put me somewhat on my guard for the rest of the day, however as a paid up student member of INSAR I did not neglect to raise the issue again at the end of the AGM and attempt to correct those misunderstanding of what I mean by respect. Something I don’t intend to let go of.
By the third day, I was worn out, couldn’t take in any presentations, certainly not really feeling competent to question and challenge any more, so I spent my time seeking out posters and speaking to those who were present to explain them. In fact I think having the poster presenters able to speak to their posters was a somewhat better means of exchanging information than the formal presentations.
At the end of the day, I was there to hear what is current, and seek out what is relevant to my own research and to follow that up, and besides the advocacy which was important, there were other researchers in fields that have a bearing on my own hypothesis who I wished to make contact with and exchange ideas.
As for any of the parties who were present for the event and are checking up on me via my blog. I expect eventually the paper (whose abstract I had submitted during the call for papers earlier this year) will eventually see the light of day somewhere. Most likely in an open access journal, because of my own ethics. You will have the opportunity to hear me present on my own Research during the NAS International conference later this year, and I promise to make it entertaining as well as informational as befits a media studies graduate.
Be seeing you :)
Monday, May 12, 2008
I dare not say much more about that and will leave you all to draw your own conclusions, but if the Uni cross the line too far I will cross over to the other side as well. I value my integrity more than I value a doctorate, and in the end it is the truth (whatever that is) that matters.
Of course my issues with academia do go beyond blaming Birmingham individually as I have even larger issues to take up with the academic paper chase for hubris that actually penalises those who think they are cool when they have been published and peer reviewed. If academics had a Union like the journalists do, then Reed Elsevier and the like would be quaking at the economic power they might have to concede in the interest of preserving both the authorial integrity of the originators of intellectual property, and the right to disseminate that as widely as it needs to be without the censorship of the proprietary rights grab.
If I were ten years younger or more (those grey hairs) I would be leading a rebellion. The times they are a changing, and if peer review is to retain respect, if contributors are not to be cowed and intimidated by the academic publishing equivalents of the Murdoch's and Maxwell's there needs to be a new way.
Open Access as currently set up may be an answer but it needs to have the best aspects of objectivity, freedom of access, and decent peer review as well. Open Access without peer review could be too much of a quacks charter.
If this particular post disappears overnight you will know that pressure has been brought for me drop it.
Sunday, April 27, 2008
5 things found in your bag:
I shall extend the meaning of bag to include those items that are often carried in my pockets, as this is the way gentlemen continue to carry their impedimenta :)
First and foremost, my laptop; a laptop or similar has been part of my life since the mid 1980's. Currently this is averitable modern day "swiss army knife" for this indispensible serves me as research tool, memory adjunct (for all those senior moments), communication aid and last but not least security blanket.
Second, is my stainless steel mug, I may not always use it, but I prefer it to be there.
Thirdly, a dictaphone, useful for making quick notes when booting up the laptop is not a practical proposition.
Fourthly, a mobile phone, although for years I lived without one, I would feel very insecure without it these days.
Fifthly, having retired my veritable and non metaphorical swiss army knife, a leatherman juice, that essential fashion accessory for today's well dressed "geek"
5 favorite things in your room:
No doubt this is another invitation to burglary, but most of the stuff in my room is junk.
I have my cameras, my non functioning wall clocks, my photographs, my flutes and my books.
5 things you have always wanted to do:
I would like to design a landmark building
I should like to travel to the USA on the QM2.
I would like to have the income to afford a Land Rover
I would like to make a movie
I would like to write a book.
Two of those things are potentially within my purview, and the other two are dependent upon landing a good job when I have completed my research
The first just ain't gonna happen in this world.
5 things you are currently into:
It is no news to say that I am into Photography, Autism Research, Land Rovers, Blogging and Emailing
5 people you’d like to tag:
I will pass on this, I can't think of anyone who I would like to torment at the moment.
Tuesday, April 15, 2008
I could not bring myself to buy either of such guides considering the unfortunate history of both authors.
On the other hand it set me to think, not only do I want to buy this guide, but would I ever need such a guide?
Perhaps it contains advice I might have found useful at one time, but then when I needed such advice there were no such guides, because there wasn't any 'asperger's ' back then to write guides about just socially different and 'dysfunctional' people.
Nowadays in a way perhaps I find the label of 'asperger's' sufficient as an explanation.
One of the first autobiographies I read was Lianne Willey's "Pretending to be normal" I was not really impressed, I didn't go around pretending to be normal, because I did not know what normal was. I may have worn more or less socially acceptable 'mask's' at times. The conventions of a suit for an interview, black tie at a funeral and a formal dinner, that sort of thing but I doubt I was ever less than me in such clothes.
I think the problem with such guides is that they accept the notion that we are foreigners in our own native lands. It may be a good analogy for attempting to understand the customs of 'neurotypical's' but it also says something far more damning and negative about that society which we are by accepting the definition that it is 'foreign', not a part of. That it is a society which is not welcoming to what we truly are.
If I were to go into a Roman Catholic Church I would take my hat off, and if I were to go into a Mosque I would take my shoes off. However since I subscribe to neither of those particular belief systems I would still feel uncomfortable and unwelcome even though I had obeyed the customs.
I would like to think if I were inviting a foreigner into my house, that I would extend the tolerance in the other direction, to allow them their customs,* for we cannot always assume that there is a guide book on hand.
Anyway it is not really about showing respect to the customs of others so much as an issue of disability accommodation. More is perhaps expected of those whose difference is invisible on the surface. There is at least an inbuilt notion in most societies (even if it is not universally practised) to be accommodating to someone who cannot see, or who cannot hear, or for whatever physical reason cannot come up to the norms of behaviour (eating with a knife and fork when your hands don't allow you, you get the picture ...)
To me the notion of accommodation is that the most flexible ought to yield. I tend to lead a life with my friends where they know what I am like, and I know what they are like. That is why they are friends, I wouldn't really want someone who only knew the picture I had painted.
To know the rules maybe is an advantage, but to know that you need not have to live your life by them if you do not chose to is equality.
* footnote (I might draw the line with Borat )
Sunday, April 13, 2008
Here I sit in a University owned hotel lobby having just checked out, reviewing my life I suppose, whilst waiting for the coach to take me back to the remainder of the residential weekend.
You only have to turn the news on to see signs of the four horsemen of the apocalypse and uncertainly over everything in the future.
The future is always uncertain for me, because never mind world events, where do I go from here, and how do I fit in?
There seem to be altogether too many people on the planet for there to be a stable life, global warming, energy crises, food and water in short supply, it seems like the chickens of Malthus, whose prophesies were long set aside, are finally coming home to roost, and so is there room for one more person on the planet, me?
My parents have respectfully “shuffled off” there “mortal coils” and what is their legacy? Apart from myself and my brother, do they still live in anyone else’s memory?
Not everyone can leave a concrete mark even on their own generation other than the headstone that marks there grave.
I know my mum left concrete marks in the most literal sence, in the form of ramps to buildings. I know these would have come eventually since the law now demands them, but without the pioneering efforts and the campaigning would that be law now? I do not think so.
So whilst my mum was alive I was as active in those campaigns as she was, as active as I am now in the autistic world.
My dad? I don’t know, I suppose had he and my mum not separated, my mum would not have made those changes in her life that led to that campaigning, and by implication would not have drawn me in.
I suppose too he played some part in the community during his lifetime. He worked, contributing to the economy, making the tools that supported the industrial life of
He served in
Back in civilian life he was part of the popular cultural movements of his generation, as a jazz musician, and later part of the folk revival, which as you can see from an earlier blog I became part of too.
Like all of us, he did bad and regrettable things in his life, I can’t say I have not done any myself, but in subtle ways a world in which he had never been, would not have been quite the same.
I know I face upheavals to come in my life. I have the prospect of kitchen and bathroom works in my flat, the disruption of which I am not looking forward to, they are the necessary improvements which should make things better for a while, before the next upheaval when I have to leave my current flat altogether as it is still scheduled for demolition around the time I will expect to be graduating as a PhD
It is like that envisaged course completion, some way off, and in a way so far off I find it hard to believe whether or not it will ever happen to me, or if something else might happen in between to cause me to leave my flat or my course of study earlier.
So why am I writing all this now.
I suppose it is reflecting on the fact that I am here at Birmingham, a year on from when I was at Birmingham last year, on a similar study weekend, planning my final assignment, and unsure where that was leading. I did not feel well a year ago, the stresses had really got to me, but I survived and moved on. For those of you who have followed my blog, it is all there to see as it happened.
So this time I am not a part of the course, I was studying. I am enjoying the temporary status of a paid lecturer instead, and nervous as to how my delivery yesterday was received. Being as I was paid for it, could I have planned it a bit better? Given it more attention? If I have another opportunity at a further study weekend I can certainly use the experience to improve on it.
In any case I thought I need to improve my ability to be more impromptu in my delivery, to be confident enough that I do not need to read from my prepared script.
If you see me in my “Whichever way” video, you will see me delivering a script, literally. I am reading off it. So I was when I first made the presentation that I later had filmed to make the video. Well I am trying to lead my life a little bit off the script now.
Perhaps there is a hidden script behind my life, and the future is already written, but I guess, nervous as I am even for the events of this afternoon, when I hope to find my flat as I left it, and not burgled, waiting as I am for the results of a brain scan I had last week, I hope that there is no melodrama waiting me. For now this actor is better off not knowing, else I could never cope with the present.
What will the world wreak tomorrow?
Tonight I have no care, and only am.
One now, one never moving instant instinct.
Continue time to turn, throw over what I feel
Return the terror, trample my delight.
For burns in my mind, memory of the light.
Outside, the blackness, shadows of the night.
Inside my soul, shines celebration of the light.
Watch this space, same time same channel ……………….
Tuesday, April 08, 2008
For a start off, being named in this subpoena (which has no validity whatever in the UK, where I reside and blog and have my being) actually puts Mr Shoemaker in jeopardy as the law stands in the UK, in that he has published a libellous statement suggesting my web site and blog's complicity in a ridiculous conspiracy for which he owes me an apology. I don't think the fact that he is an attorney in the US gives him any immunity outside of his jurisdiction for that. I want that apology Mr Shoemaker, I want it in public. Do you have a sense of decency Mr Shoemaker? Then use it!
I would suggest to Mr Shoemaker if he is reading this (which I doubt given the factual errors in the subpoena) to look through my blogs and my website so that he will have no need to subpoena the "evidence" It is there in cyberspace in the full public gaze, and he will see what little I have to contribute to what I consider and have always considered to be a side show to the basic issues of Autistic and Disability rights which I am concerned with. Beware too it is covered by copyright and even the reproduction of such in a court document invites penalties. (There is case law on that somewhere in the asinine chronicles of the law as I recall)
Indeed it is a matter of record that I fell out with the Autism hub over the predominance of what I saw as a pre-occupation with the mercury Issue that to me is totally irrelevant to what I am about so far as promoting the much misunderstood and maligned concept of neurodiversity.
As for any financial support I am giving to neurodiversity.com, that is a leg to pull is it not? Never mind pulling your own, you won't have any left to stand upon.
It is a matter of fact that some years ago I attempted to snaffle unto myself the domain name Neurodiversity.Com and was somewhat miffed to discover it being sat upon, by I knew not whom, long before I discovered the identity of the Seidel's
Mr Shoemaker, if you would like me to appear in person in your proceedings, you would need to pay for that, and even then I cannot guarantee that the laws of your country would allow me a visa to travel so your attempts are really nugatory aren't they?
This whole thing reminds me of the classic tale of Canute commanding the waves.
If you look sensibly at this subpoena, you will realise that it is a pathetic attempt to command the impossible.
Nobody, and I mean nobody keeps records of the type that have been requested, and the demons that are being invoked here are invisible. Arthur Miller anybody???
In my jurisdiction I have little doubt that Mr Shoemaker would be regarded as a vexatious litigant, and more than that would fall foul of the standards of the law society and have to answer, just as Dr Wakefield is having to answer to his professional body, where the best advice in law will not protect him from the truth.
We may have stricter libel laws in the UK, and they do cut both ways for sure but hear this ... criminal Robert Maxwell used them for years to suppress adverse comment, but when he died the truth came out, that he was a swindler, and a cheat who abused the law.
Elton John may have used them to extract damages for the accusation that he was gay, but the truth is he is gay and has admitted it.
Worse than that Geoffrey Archer has gone to gaol for perjury over his libel suit.
There are consequences Mr Shoemaker, and if you do not face them in this world, you surely will in the next. Is it worth your immortal soul Mr Shoemaker? Is it?
A retraction is so simple Mr Shoemaker, can we have it? I hope I do not have to extract it through the courts in this land or yours.
Your argument is not my argument and never has been. You have gained precisely nothing in your endeavours and I am sure if Kathleen were to appear, the information that she would give would be to the detriment of your case not in it's favour.
Monday, March 24, 2008
However if I were to start a Christian blog there are many who would find it as offensive as the curebies find my stance on Autism.
One always has to chose a line to stand on, as Luther did.
By denomination I am a Baptist, and that no doubt already sends shivers down the spine of liberal Episcopalians and new age Universalists, but it also puts me beyond the pale of the equally 'heretic' established Churches, who are getting ready to submit me to the blogosphere's equivalent of 'auto da fe' no doubt. (see below)
That is the problem when you believe there is only one way, you tend to be exclusive.
Jesus of course was not exclusive, except in the sense that he asked people to follow him and not some pharasaical sect. (and who can say for sure which our denominations are the new pharisees)
In following Jesus that puts me at odds with many folk including some of the original Apostles, who let's face it were not beyond criticism, and Paul was the biggest self confessed sinner of them all.
Why do I believe in my particular brand of Christianity?
- That is because I was convinced by Bible study that the way to demonstrate ones faith is through the testimony of adult baptism, as Jesus himself underwent.
Why I do I believe Jesus is the Christ and my saviour?
That is for two reasons:
- Firstly the word, the message, logos, call it what you will. The message of love, and peace and forgiveness, a forgiveness that is a free gift we have not earned, for which Jesus paid the price.
- Secondly because of the indwelling Holy Spirit, and I am not going to get into arguments of Filioque, let the Greek and Roman Churches sort that one out for themselves.
- If you look at me or my brother and listen to the way we speak, you have in a way seen oury genetic father, for we both bear his mannerisms either inherited or learnt. If you follow Jesus you have seen the heavenly father for I do believe that the message he delivered in his stay on earth was so powerful, so universal, so appropriate for all time that it can only have come from our Heavenly Father the maker of everything we are and exist amongst.
So was there room for Dinosaurs on the Ark?
- Don't ask me that one, I wasn't around at the time, you might just as well worry about trees falling silently in the forests of Berkeley (I like the notion of there being forests in Berkeley even if it may not be literally true, Californians please advise)
How do I square the idea of an immortal soul with my scientific belief in embodied cognition?
- H'mm I suppose I shall have to incline toward bodily resurrection and conjuring tricks with bones then :)
- Well actually it is post modernism that allows me to privilege the religious gaze over the scientific one if that works for me.
What I am anyway, is not yet decided, until I have been everything that I can be. My soul has to be the sum of everything which applies - not an equation in which only three dimensions apply.
I am not sure whether I shall allow comments on this blog, being as religion and faith are such personal things for this much is certainty. In the opinions of some I will be a hell bound infidel, and to others a delusional crazy, whose migraine auras have got the better of him.
It's something I can't force on anybody, you make your choice as I make mine, the same choice Adam had with the apple, take it or leave it.
Here endeth the sermon, you can see why they don't have me preaching in the pulpit at my home Church now can't you :)
and now for something completely different ...
Sunday, March 16, 2008
This is a job with great opportunities for one of us to do something about autism, where it matters, so here goes .....
Policy and Parliamentary Officer (Equality and financial security)
- Salary: £26,289 - £30,730
- Based in London
The National Autistic Society is the UKs leading charity for people affected by autism. Our ambition is to end the isolation of over two million people in the UK whose lives are touched by autism.
Working as part of a growing and dynamic team, you will lead on influencing government policy and legislation in the fields of employment, benefits, human rights and justice to promote the interests of people living with autism.
For an information pack please contact the Recruitment Team on 020 7903 3572 or email email@example.com stating in which format you would like to receive your pack electronically or via post. Alternatively, download a job description and application form below.
Applications are sought from all suitably qualified sections of the community but particularly welcome from those with a diagnosis of autism or Asperger syndrome.
Closing date for applications: Tuesday, 18 March 2008
Interview date: Thursday, 3 April 2008
Committed to Equal Opportunities & Investors in People.
Registered Charity No. 269425.
Wednesday, March 12, 2008
Now this is not a unique experience, it has happened before but on getting home I discovered the bomb had nothing to do with Osama Bin Laden at all but Adolf Hitler.
It is such a strange coincidence that I must report it, because tonight the Belgrade Theatre in Coventry (yes it is named after that Belgrade) was premiering a play about the Coventry Blitz
The premiere was cancelled because not 100 yards away in a building site associated with the Theatre redevelopment, a 1000 pound World War Two bomb turned up, and that is enough explosive to warrant cordoning off a considerable area.
It's hard to think of my parents surviving these things being dropped regularly on the City, my dad was rendered homeless by one of them.
The relics of war last a long time, and I doubt if this is the last bomb that will turn up. We need to consider the amount of ordinance that is still being expended around the world and realise just how long into the future that legacy is going to last.
Monday, March 10, 2008
Well whether I can even afford to replace it at the moment, is a moot point too, I think the money would be better invested in my studies right now. So it seems I shall have to part with the landie, and hope I can find someone who will be able to make use of the parts.
Once I started back at Uni, I suppose this was inevitable, that the conflict of expenses would come and I need to be realistic.
I had to get rid of my previous car for similar reasons in order to pay the fees for the first autism course I took at Birmingham Uni.
So here is some footage, it's all nostalgia now - gone avec les neiges d'antan :(
Friday, March 07, 2008
That is a real doozy of a paper which has to be meticulously referenced and well argued in scientific and sociological terms.
It is unfortunate I will not get to present it after all, but I guess it does not present in itself any new research on autism (which is what IMFAR wants) and so does not make the grade.
I do think though that it is saying important things that every autism scientist and social researcher should be listening to, but even if do I ever get round to submitting it to a journal instead, it has no greater likelihood of reaching it's intended audience.
I still live in hope of being able to presentit at the Disability Studies Association's conference instead, but it's not been accepted there either yet.
It's not a paper I am writing for the love of it, but out of necessity to get an important point across somehow, and it is tough work.
On the other hand, kudos to me, I am also working on another paper, for which I am being paid at the official lecturer rates for Birmingham University.
So far, because I am talking on a subject close to my heart, autistic politics and culture, it is almost writing itself, and the difficulty will be there to keep it within the timespan and subject limits of what I have been asked for.
Trouble is that being paid for it, raises all manner of questions, and I have had to go to the benefits people to ask permission to do this as therapeutic work.
It is therapeutic all right in that nothing lifts my self esteem so much as being paid for doing something like this. Everything else I have ever presented, I have ended up paying for one way or another, with accommodation, conference fees and all.
Being paid for once is a good start and a foot in the door at least.
Monday, March 03, 2008
Thursday, February 14, 2008
Believe it or not I used to be part of Earlsdon Morris (Shown here in Utrecht) playing in the band until I committed some social faux pas I cannot recall. That is of course the everyday hazard of being aspie and undiagnosed (this was back in the 1980's) never mind that I was probably drunk at the time considering that Morris men are not renowned for staying sober when the opportunity presents.
Thursday, January 31, 2008
I assert my moral rights to the domain name on the basis that it is more legitimate for me as an autistic person, having some involvement in the world of advocacy to claim that autistics speak for autism in Europe and not organisations whose motivation is to falsely claim that they speak for autism, be that Autism Europe or anyone else.
Given the controversial nature of the claim I have just staked, I intend to keep it in the words of the advertising standards authority in the Uk:
Therefore I will not entertain any "NT" bashing or other slurs, I will maintain instead the position of equality of all persons no matter what their neurological make-up.
Because there is at present no one organisation run by autistic people that has a monopoly claim to representation any more than any other, I intend to use the site mainly as signpost to the multifarious world of autistic advocacy, with the usual "health warnings" that such sites as can be found via hyperlinking do not necessarily reflect the views of the this particular author. Though you can be sure that I will, because this is an EU domain, lean towards the much neglected European perspective.
Don't expect wonders from this site overnight, I am well busy at the moment, with my research and my various comings and goings in the autistic world.
Saturday, January 26, 2008
Well I did so the other day but had to explain that because of my studies and my other involvements that I had at least five better things to do, two that had deadlines in the next week and one that was already overdue.
That's my life, you have seen one of my mindmaps, the one for tasks outstanding is even more frightening in the number of branches.
I don't know who I am sometimes.
For instance I am going to London again on 5th February for an NAS launch, but I have booked my day out.
I am spending the morning with the NAS publicity guy as I have a lot of outstanding issues to be discussed with him (you may recall my challenge from an earlier blog) So I will have my advocacy hat on. I then need to take advantage of being unlike Elvis and still in the building to use the library, and I need to interview one of the staff members, so I will have my researcher hat on.
When I go to the big bash at Houses of Parliament (hoping I do not hold up the queue to get through security as long as I did last time because of all the OCD gear in my bag) I shall ostensibly have my NAS trustee hat on, wherein I am supposed to be nice to everybody, but I will have another hat on too, because I need to use this schmoozing opportunity to tap any potential "celebs" to get there support for Autscape.
Not forgetting the two papers I am writing and my next neurologist's appointment, or the endless hassle of phoning people up who are tardy in replying to my requests to use there facilities for my research.
Well this time last year I was heading for a breakdown, no me, not my lLandie (as that allways breaks down)
Sunday, January 20, 2008
I hope some of you may trouble yourselves to complete it, never mind it's faults, I am sure you will find many :(
I expect I will later on as well :( :(
I hope all the regulars here are convinced of the bona fides and you can keep up to date with the research on my research blog. http://autvideo.blogspot.com/
The survey itself is here, http://www.survey.bris.ac.uk/bham/autvideo
and only I can gain access to the results or information so it is confidential.
If you are answering from outside the UK, the ethnicity data is UK centric, however you can fill in a section to say that you are not UK resident, and that would help me know where the replies are coming from.
Naturally it would be extremely difficult for non UK residents and people who are distant from Birmingham to participate in the next stage so my apologies there.
Wednesday, January 09, 2008
I suppose, looking back that my blog has been much concerned with the trials and tribulations of being and Aspie in Academia.
I left the relative security of taught courses in further education for the insecurity firstly of a distance education course, and now research, travelling deeper into Terra Incognita with each move.
I know it is difficult enough for most of us at any level of education, either as children or adults. Support did not exist when I was a child and the whole ethos of education was radically different from what it is today (not that either is better than the other they are both as bad)
I was pushed toward University when I was younger, but I was clearly not ready for it, either academically or socially.
Today I am maybe more successful than many of my peers simply because I have all those years of living in the world behind me. In a strange way I never felt fully adult until both my parents were dead.
Nonetheless my particular path is not one I would recommend to any other aspiring Aspie academic, it has been taken of necessity rather than choice, both because of the limited funding available to me, and the choices dictated by my initial lack of the right qualifications. It is also a function of the callous disregard that this government has towards reskilling people of an older generation http://news.bbc.co.uk/1/hi/education/7178836.stm
For those of us who were not successful the first time round this is devastating news, socially, economically and educationally we are being written off.
For me nothing is certain, I was just about able to pay for my studies last year, and at the moment I have embarked on a long process of research with no certain future so far as funding is concerned.
Research that is not just for it’s own sake but I hope will make a difference to the understanding and conceptualisation of autism as well as having pragmatic applications for the design and delivery of education to my peer group.
It is something, whilst I await ethical approval and all the other bureaucracy, which is taking me deeper into the realms of cognitive neuroscience.
That is the problem with my research, it was bad enough last year having to deal with the lack of structure brought about by a non resident course, now I do not even have the structure of modules and guided learning to comply with. It is not so bad for all researchers, many will find that they simply slot into an already determined research programme, not for me alas.
I do find however that mind mapping software is invaluable, because I can keep my notes all linked within this structure albeit it is getting somewhat re-entrant in the complexity of its loops and links as you can see from the illustration that heads this blog, though in a way that appeals to my mind which seems to revel in multidimensionality. I have already conceived of a vast array of statistical tests I can carry out on my first questionnaire in order to see how many different sub sets I can create from one set of data :) All of that somewhat off topic perhaps.
According to my supervisor I am well ahead of the game, many students not having reached this stage until the second year, but without anything to guide me I actually feel awfully behind.
I have a desperate schedule to keep up as I have already been accepted to present on my Research in September, and before I can even get ahead with writing that paper I have committed myself to writing another of which more anon.
In some peoples eyes this would make me a despised “super aspie” but it has taken me more than forty five years since infants school to get this far, I am way behind Temple Grandin, Stephen Shore and Wendy Lawson as if anyone is counting.