A memory of the Coventry Blitz

It is so long since I have blogged that I had forgotten this was still active at all.

Anyway this is not a post from me, it is a post from my dad, 75 years ago tonight, as tonight is not an ordinary night, it is the 75th Anniversary of the Coventry Blitz.

Then came the night of November 14th 1940. It was a cold but moonlit night, the full moon was so bright that it was almost possible to read a newspaper outside. The sirens sounded their warning about 7 pm and almost immediately we could hear bombs whistling down in the distance, and the sound of distant explosions. Anti aircraft guns added to the general din, the noise they made when they fired was a hollow bang like someone hitting an empty oil drum with hammer , and the sound of shells going off thousands of feet  in the air was a lazy crump, almost like a car door being shut. After about half and hour we realised it was going to be a big raid so we huddled under the stairs. There was my mother, my elder brother Fred who was 11 years older than me, and myself. I thin there was also one of  my elder sisters, but I am not sure. To be quite honest I was never sure where various members of the family lived at various times. My brother Fred armed himself with an axe and went out into the night. After a while he came back to tell us that fires were burning everywhere and the Germans were dropping a new type of incendiary bomb which exploded when it had been alight for a minute, scattering white hot burning magnesium for yards in every direction. They were very dangerous and much more deadly than the older type. By about 8 0 clock the raid was well under way, there was an almost continual noise, the sound of bombs screaming in the distance, the sudden whoosh of a bomb dropping neared followed by the blast of the explosion and that followed by the almost musical tinkle of shattered glass falling in the street. Then the bang and crump of anti aircraft guns, The noise of falling shrapnel from these was like hail,  occasionally a large piece would fall with a hiss and a plop as it went through a roof tile or bounced off the pavement. Sometimes a brick or chunk of masonry would crash to the ground outsider, flung hundreds of yards by some distant bomb and in between the sounds of the various crashes and bangs could be heard the very deep  pulsating roar of the German bombers as they flew at will over the city. We huddled in our cramped shelter under the stairs with only a hurricane lamp for light. Quite early on the electricity, gas and water was put out of action. I do not thing we had a drink of any kind, we were caught unprepared for such a long raid. The air became thick with the smell of smoke mixed with the acrid smell of burnt explosives and the peculiar smell of old houses that have been blown apart, a mixture of old plaster and soot. Although Crabmill lane was a couple of miles from the city centre, we were not very far from various factories. Around us, within ten minutes walking distance in every direction lay the factories of Morris Motor Works, Courtauld's, the rayon spinning firm, a little further on, Daimler and so on, and many smaller manufacturing companies. All these were potential targets for the Germans so bombs rained down all around us. I was only thirteen years old, and I was not really aware of the danger of the situation, but the fear was there. Time seemed to stand still and minutes became hours and gradually my senses were dulled by continual noise. I didn't know what time it was, it may have been about 11 or 12 o clock but suddenly the house shook with a terrific explosion. The rooms were full of dust and glass, the windows and doors were blown in, there was no sound, just the choking smell of plaster, hot air, and burnt gasses. Later on we discovered that a very large bomb had blown a crater in Stoney Stanton road only 70 or 80 yards away. Time stood still. I don't know if I dozed  off or not, but I remember a voice shouting "is there anyone in here" it was a warden. When we answered he told us that we must move out. There was a land mine sitting near the bomb crater just up the road. We moved quickly and gathered up a few clothes. I had two cats, one of which had disappeared. I was more concerned with them than anything else. The air raid warden guided us out and told us to make our way to the shelters in the Morris  Motor Works on the Bell Green Rd about half a mile to the north. We hurried out past burning buildings, perhaps relieved to be getting away. Eventually we found the comparative safety of the Morris underground shelter. The rest of the raid was spent there. I do not remember the "all clear" being sounded on the factory sirens, but by six o clock there was no more sound of German Aircraft. The only place we could go was to my married sister’s house at 284 Bell Green road. We stumbled out into the dark morning passing the wreckage of bombed buildings. The air stank, smoke hung everywhere, and here and there we passed a burning house, left to burn itself out, for there was no water to fight the fires, WE reach my sisters house which was full of refugees like ourselves. Most of them were women and some of hem had babies in their arms. I remember that one or two were feeding their babies from their breasts which I felt was a little embarrassing. I was just old enough to feel the awakening of sexual differences. No one really bothered, I guess we were all glad to be alive. I am very vague about the next few days. I remember my brother coming in, he had been into the city, he said it was a ruin.

Here is a link to a site from the BBC 

Sic Transit Gloria Mundi

You may well see me on the allotment and think I look reasonably fit, but it takes it's toll and in the evenings, and often the mornings too, I am none too mobile. Sitting at my computer does not do me any better than walking to and fro on my plot, digging and weeding and whatever, because that does my back in as well.

None of it is getting any better, my years (I was 58 last week) and the turn of the year hardly help. It's a wonder I don't go down with seasonal affective depression too, now the nights are longer. Indeed it maybe a bite from the old black dog that has brought this particular post on.

Whither am I going, and how much of a hurry am I to get there?  Well truth be told, I have prevaricated and excused and put off and procrastinated for too long to the point where I am not even concerned about reaching the end of the academic journey.

My priorities are all mixed up. To say that I am (literally) building a hedge against a Government that has managed to survive for too long (unlike me) about whom if one were to say (in lengthy peroration and nesting parentheses (see I can't help my prolixitiy any more than my lax joints (and perhaps bowels, (look you another nest of brackets) , ),),) about whom I will say, that to say they have little regard for the common people is taking litotes and understatement a little far, they have a positive hatred of us, to say that I am building a hedge against them is what I have been doing on my allotment and it has been more relaxing for me than the academic grind.

(or from trying to understand that last paragraph, which I shall dedicate to Frankie Happé and Kristina Chew)


I am not quite losing my marbles, though I did lose a black lens cap amongst the fallen leaves in Wappenbury wood on Sunday. However I have lost my enthusiasm for the academic project. I no longer have any desire whatever to pursue another set of grandiose post nominals.

I do feel however, that the write up of the Thesis is the boring part, and difficult too, when I run away with my own prose, (or it runs away with me, how strange this language, allowing such chiasmus)

I feel it is a stage I am not in a hurry to complete, and I feel the prize at the end, of wearing a silly hat in a big hall in front of lot's of others in similar Monty Python outfits is not the real prize at all.

I feel that the real end product, is the Autonomy journal. That is what has been made possible by this academic journey, it is the contacts I have made, and the learning, and research, learning not just how the peer review system and literature works, but figuring out how to make the new opportunities of open publishing and software work for me. I hope the internet will do the rest and that it will eventually take on a life of it's own ever further from mine.

And what has autism to do with all of that? Well for as much as autism is embedded into my being, for good or ill, I am embedded in the wider phenomenon of autism. Themes for Autonomy to explore, as we go a stage yet beyond self narrating zoo exhibits, a stage beyond so called "self advocacy" a term I have come to profoundly dislike for reasons I shall go into another time, but a stage where we take our proper place on the stage and get to challenge those core assumptions and assumed rights that we are always the subjects and never the originators of the ideas that have come to be included in the field of "autism studies".

Peer pressure and the press

Being the editor of a new academic journal is nothing like I thought it would be.

Whilst I set out from egalitarian principles I have come to realise that the exigencies of peer review means that I have had to reject more potential articles than I would have liked.

This partially explains the delay of the second edition (which is in preperation)

Anyone who has been involved in trying to get published will realise the gestation period is a long one. That is out of my hands, because one is dependent not only on overcoming ones own inertia, but the sometimes long response times of others in the chain.

It has been  tempting to slip in an article of my own (no questions asked, I am the editor after all) but that will not do, albeit the first edition does showcase a short essay of mine, it is there for historical more than current relevance along with reprints (can one talk about reprints in a digital context?) of other important work, which is part of the journals ethos as well as new papers.

Anyway this bloggy blogatory whatever style of writing won't do, and I have had to reject an article of my own, even though it can be found on a bona fide academic repository. It's just not good enough.

The article in the next edition that does bear the Author's authorship has had to be considerably rewritten to pass muster, even though it has been presented orally in an international context.

I am afraid the second edition of Autonomy will be nothing like as compendious as I had hoped, but I shall have to get over that, I guess it takes time to build it up and there are articles currently coming up for peer review or under consideration that just are not ready for this edition, delayed though it is.

What is the impetus for getting it together at last? Well the summer has been a long vacation for me, my allotment has made the most demands, and the round of NAS meetings the next after that.  The NAS is out of the way now I have retired, I shall only be having four meeting a year after this. My doctorate can wait, (who needs it?) but people at my Uni have been asking questions about Autonomy, so I had better get a move on. Anyway vanity publishing apart, no edition would be complete without an editorial and that is even more difficult to write than a paper or a review, because that requires me to actually read the stuff that has been submitted and approved for the current edition.

Which reminds me, I don't know about anyone owing a cock to Asclepius, Aesculapious or whatever his name was (Socrates would probably know) but I had better get round to invoicing the NAS for the first commercial transaction of the Autreach Press. Well this enterprise does need to be self supporting doesn't it?

And yes folks, for all you doubters, although it is hosted in my web space, which I pay for, it is nonetheless an authentic registered journal with an editorial board and peer reviewers.

The parting glass.

This has been quite a significant weekend for me, not necessarily because I am getting increasingly careless and forgetful, leaving a bag with my nightclothes and spare underwear in the hotel room, and now glad to be home for a change of underwear and socks, oh no, not for that.

I have now ceased after I think 12 years (or maybe more, I told you I was getting forgetful) on the Council of the NAS and 9 on the Board, to be on either.  I didn't resign, I was pushed. The NAS instituted a constitutional ammendment ( I think the USA could do with a few of those right now) limiting the number of terms one could serve, so it was time for my retirement.

I might have continued on the Council, but I made a decision there was no point. It is always the case that (unless you have done something spectacularly bad in office) you stand a greater chance of being re-elected if you have already been in. I thought that my continuing when there was no chance of progressing back to the board, would only be blocking the opportunities for others who could do so if they were elected onto the Council.

In other words seniority or senility notwithstanding, there is a time to move on and leave it to people with more remaining energy than oneself.  I shall not miss the somewhat stressful journeys to London and back, and the stays in a hotel I have to confess I find less than pleasant (even with clean underwear and socks).

It also means I can potentially change my relationship with the NAS.  I can be more critical (theoretically that is, as I am told I have never particularly pulled any punches in what I have said when I have disagreed with it) but more than that I could engage in a commercial or employment relationship, something I have been unable to do for all those years I have been in governance.

If you should ever catch my little cameo appearance in the NAS "Ask Autism" product/project about to be launched at anytime, I might add I was not paid for that, or anything else I have ever done for the NAS, beyond my train, bus and taxi fares. There you might be enlightened for if they have not edited out I inform the world that I was not by over a decade the first autistic person to be elected onto the board of an autistic organisation, that was Thomas McKean on the Autism Society of America back in the 90's.

I was the first on the board of the NAS though, and as I leave I learn that another was elected on Saturday.  I hope I have done my bit towards making that a less exceptional fact than such things would have been considered in the past.

Return to Blogging

Perhaps now is the time to dip my toe back in the water.

I guess those turbulent waters have settled somewhat and maybe the fanatics and the fools have all left the blogosphere by now, leaving this sometimes fanatical and foolish blogger free rein to reign again. (have I got my spelling right there?)

Anyway I may well change my profile picture and other stuff but here goes.

This year will see some changes. I have for the most part spent my time on my allotment which has been a particularly important focus in my life given as it has fed me quite well, never mind it needs constant attention. I have built a shed, and am quite pleased with myself for that, and something that approximates a greenhouse. Next year I intend to construct something on the lines of the fruit cage I inherited to protect my brassicas from marauding pigeons.

Other than that I have fitted in a fair amount of travel, with the NAS, Birmingham University and conference speaking. Not international travel mind you. That is not for me, nor ever will be. I do all my international business right here on the internet, with my servers sitting in sunny California creating a jurisdictional nightmare I suppose should I ever get on the wrong side of the tyrant Barack Obama or his minions (dare I say controllers)

Well that is enough of the politics. The state of UK politics is even more dire, the most any sensible person can hope to do is survive until the next election, which of course brings me back to the allotment.

I shall be retiring from the NAS for the most part next month. It will be the end of 9 years on the Board and I think something like 12 or 13 on the Council, I have lost count. I retire from the board because I have to. There is a new set of rules that prevents anyone from completing more than 3 terms in a lifetime of membership. I retire from the Council of my own free will, to make way for fresh blood in the hope that there is going to be some continuity of autistic membership on the board, which I would only be in the way of if I remained, blocking the career path of some other autistic wannabe trustee.

I will not be gone from the NAS scene for good however. That is not my style, it has played all too much a role in my life for me to be able to deal with that change.

I shall remain on the Brand and Development committee, which is the "innovative" arm of the NAS, it's commercial part, which for statutory reasons is registered as a seperate company from the NAS charity itself. I think it is important for me to remain there, and at this current time it is where I can both keep an eye on things, and I think be of maximum effect in the organisation.

Will I ever complete my Doctorate? Well I have finished the formal period anyway and am this month entering what is technically called "Thesis awaited status" In other words I have a terminal date by which I must submit my thesis, so I shall be slowly completing the write up. It is no longer the most important thing in my life, the qualification will just be a gloss on what I already know, I don't really need it unless I am intent upon a carreer in academic teaching, and I see now, this close to my sixtieth that it is probably not going to happen unless there are major reforms and changes in academia, which is still moving rapidly in the wrong direction away from the sort of mileu I would be happy to be permanently employed in.  Still "Thesis awaited" status is a convenient way to remain connected for as long as I can, and get some continuing advantage out of University affiliation.

For the record my last academic presentation at the Sheffield Normalcy  conference was probably my least academic in terms of subverting the paradigms of Normalcy, something which too few presenters seemed to be interested in doing. I am not a musicologist, but I presented on Moondog I sang the introduction, launched immediatly into playing a Moondog piece on my flute and puntuated the proceedings with recordings of Moondogs extraordinary and influential music.  Ok there was a sociological and disability studies context and autism is never far away from the picture, as it is what I literally do every day, but it certainly was not the kind of thing I have done elsewhere. It's not the first time I have done something quite like that however, as many years ago I did a similar thing called "From William Morris to Morris Dancing" for the local branch of the William Morris society where I interspersed a more than hypothetical connection with recorded and actual performance.

I was totally in character for the Moondog part however, dressed (stylishly according to some commentators) in a blanket and I even managed to perform on the streets of Sheffield in the early morning waiting for the Uni to open it's doors.

So the big question? Why am I blogging again. Well I expect I still have things to say, and saying them on Facebook is a bit parochial, not to mention limited.

From Facebook an epic whinge, all too common these days.

I have just awoken this blog out of obscurity to post my current disgruntlement with the lack of ability of our national health service to communicate with me, what I desire to know.

Here it is a transcript of comments from Facebook. Needless to say nobody has phoned back yet!

Feeling somewhat depressed this morning, it's a contradictory mood, I am thinking positively about my thesis, writing stuff in my head, but depressed and despairing about my general long term health. I feel that never mind the economy there are still a vast range of health services for people in my situation I am missing out on, because my GP surgery has effectively written me off. It's a communication thing really, I don't know where to start to remedy this and get a bit of person centred planning into my life. Pain and fatigue just whacks you day after day. It's just not properly recognised or catered for.

Like · · Promote

• 

  Laurence Benjamin Arnold So here we go, it's not as if I don't try and do something about my situation, but it is often pointless. GP is the wrong place to start you need to be forearmed with information and know how to give them a shove. So I just tried PAL's and I have to say absolutely useless, failed to really grasp just what the problem is or diagnose a realistic way out of it.

  4 hours ago · Like
• 

  Laurence Benjamin Arnold And of course the NAS helpline is on answerphone.

  4 hours ago · Like
• 

  Laurence Benjamin Arnold Really what is the point

  3 hours ago · Like
• 

  Laurence Benjamin Arnold So now I ring the number PALS passed the buck onto, and they say they don't like the tone of my voice!!!!! I started out mildly desperate, I am now increasingly desperate. Sometimes it does not pay to even try and find anything out, you get disappointment after disappointment and rejection.

  3 hours ago · Like
• 

  Laurence Benjamin Arnold So this bloody autism act, where is the local number an autistic person can call to get there health problems sorted? it doesn't exist does it!!

  3 hours ago · Like
• 

  Laurence Benjamin Arnold How many different numbers have I tried to ring now? None of the autism charities are available, got two rather unsatisfactory answers from different parts of the NHS, including one number that was wrong so I don't know what it is now, and finally put through to another dead end answerphone. This is the NHS in the 21st century, can't say it was a lot better in the 20th either, but it ought to be. All I want is the information to start with, and to know what to do with it!!! That can't be that hard can it, and before anyone can say websites, have you ever seen a decent and clear "official" website out there that doesn't provide further obfuscation and misleading information, never mind leaving off the vital point of contact that you can rely on to be there.

  2 hours ago · Like

This is my last Blog

This is my last Blog.

The system no longer works, it is practically impossible to comment on blogs due to Capcha's because they don't work, I know I typed a response correctly but it still wouldn't let me in. The technology is unreliable, totally broken, and other than that people are migrating from the blog world in droves.

No I am going back to the original concept of my web site. I shall over time be reforming that and all I shall post hereafter are links to it.

This blog will remain as historical material  until Google finally pulls the plugs (which I expect they will eventually)

Autism Hub, Autismo, you too are history, avec les neiges d'antan and newsnet in it's time.

Call for Papers ‘Cure or curiosity, What drives autism research?’

Please distribute widely

1^st Call for Papers

The theme is ‘Cure or curiosity, What drives autism research?’

This is the first call for papers for “Autonomy” The critical Journal of Interdisciplinary Autism Studies, published through the Open Journals System, by the Autreach Press.

We are an open access peer reviewed journal, with the aim of encouraging discourse between the different academic disciplines engaged in autism research, with the focus on being autistic led. We  therefore particularly welcome and encourage papers from autistic scholars who have not been published before.

We invite submissions, Academic Papers, Comment, and Reviews. (This includes reviews of all media including conferences)

The submissions process is on line but not exclusively, so we will also accept papers submitted by email, provided they are in a format that can be understood and edited. Alternative modes of submission will also be considered if this is an access issue, please contact the principal editor for further details

We do not set a house citation style, but do require citation and referencing.

Authors retain copyright but grant the journal a creative commons attribution 3 licence on any material submitted.

Further details can be found on http://www.autreach.info

For any further queries please email the Principal Editor at autonomy@larry-arnold.net

The deadline for the next issue is December 18^th 2012

Laurence Arnold PGCert (SpEd) FRSA

Principal Editor

The Autumn of my years

Is it really three months since I last blogged? Evidently so. I suppose like a lot of ex bloggers I have migrated to Facebook, which I guess is a little bit selfish of me.

Well I have lost over a stone in weight since I last blogged here. Gotto be a reason for that. Oh yes I have been digging for victory haven't I? Of late I have also been eating the produce of my allotment albeit it has been one heck of a struggle against the elements this year, with the rain and the slugs who have had more than there fair share of what I have been trying to grow. I lost a lot of crops that hardly even got started.

Still I know where it is at now, and what seems to grow well. Broad beans did fine, and I got quite a few peas eventually, and now I am waiting for the runner beans to swell out. I have some beetroot that looks healthy enough, and some strange red lettucy salady thing. 

Wasn't I supposed to be some kind of an autism researcher and academic?

Yes I guess I was, but you know how it is, when a new interest comes along. This last week however I was doing my academic bit and presenting at the 6th Lancaster Disability Studies conference, on the Social Construction of the Savant. Now how many academics do you know who can cite Oscar Wilde, C S Lewis, Arthur Figgis (AKA John Cleese) both of Shakespeare's professional fools and the usual suspects Treffert, Howlin and Hermelin in the same paper. I do because I can, like the proverbial dog and it's parts.

Well it has to be said on the Disability Studies circuit you are not anybody until you have experienced me walking out on your presentation at least once. There was the Nebraskan who had the temerity to do a presentation on Amanda Bagg's "in my own language" which he completely buried in the obscure language of cultural studies. As for the guy who was doing a Lacanian analysis. AAAARGH was all that I could say.

Nonetheless there was a strong contingent of allies, with Steve Graby, rising star Damian Milton, who is becoming less mute and inglorious by the day. Mitzi Waltz was also there complementing my performance (sorry I mean presentation) The BBC were also there filming our Damian for a documentary about ABA.

Well did I get drunk in the evenings? Not arf, but then you do, playing your flute in the bar and that sort of thing.

Next week I have a far more sober conference, the Hardest Hit, where I shall be repeating my paper of two years ago, the predictions of which were horribly accurate about the present Governments desire to control expenditure on disabled people by essentially denying the category. There are several ironies about this one. Firstly they don't seem to have got hold of the idea that they should arrange car parking for attendees. Secondly the big joke is the notion of secure and waged academics turning there gaze on the great unwashed and unemployed, it reminds me of the joke about the Pope who wears swimming trunks in the bath.

Then next week also sees the beginning of what will be (definitely this time) my final year of study at Birmingham University. In fact I have to be there tomorrow to sort some administrative stuff out.

Well it has been an interesting year even if I haven't blogged much about it. I don't think I mentioned that I will have three paintings on exhibition at the Hong Kong Convention and Exhibition centre from this November until the new year. I also have a short book chapter to write for a text book introduction to Disability Studies to be published by Sage next year.

Digging for Victory

In case anyone has wondered what has become of me of late, I should say my life has entered a new stage, or rather it has recovered an old one.

One of the things I very much missed after my mum died was the garden, where I used to take out my frustrations and grow vegetables in a very small urban plot, right in the centre of Coventry.

However that is all history now, I have acquired an allotment. It is simply huge compared with what I have dealt with before.

A little history:

The allotments are situated on what was a former sewage works, and were established in the 1960's. The sewage works must have been built at the end of the 19th Century or the beginning of the last one, and served Foleshill Rural District Council. Anyway the sewage works backed onto the River Sowe at Henley Green, and comprised the lower fields of Henley Mill Farm. The rest of the farm is still a farm today, and it surprising to find in an otherwise urban district. I drive down what is a single track country lane, from the back of Henley College and there it is.

Anyway my allotment came up surprisingly quick.I had applied earlier in the year during the snow, having done a neighbour a favour by taking an old carpet down as he does not have a car. He suggested that I should put my name down and I did.

So far as my allotment goes, it appears that it was formerly held by a group of disabled people, and had been made up with wheelchair paths. It had been abandoned about 6 months ago. The lower part of it however had been left to nature from before as it was too much for the group to cope with.

Since I did not acquire this allotment till May, it has been rather late to do much preparation and planting, as all the digging would have been done over winter.

I have had to clear wild brambles, cut back overgrown willow trees, uproot other shrubs which had taken over, before even contemplating anything else.

As it is a large part is still under tarpaulin until I have either the time and the energy to dig it. I have had to clear what I can with the help of my brother and plant a few crops hoping for the best.

The weather has not been ideal, except for the weeds, brambles and grass, which shoot up everywhere faster than anything I have planted.

Still it is early days yet.

Bloggers build walls and hide behind moats

I have been trying to comment on fellow Autism Hub Blogger Estee Klar Wolfond's  blog against her unfounded insult to William Morris. The security settings defeat this poor dyslexic fool.

But this is what I wanted to say, and you had  better listen, you smug and self satisfied mockers of the true genius of neurodiversity, yes none other than Morris himself, who could combine a ministry to the "swinish rich" with his standing alongside the workers on Bloody Sunday

This is what your blog settings would not allow me to post

"I do remind you again not to be so ignorant about William Morris, he was no stranger to neurodiversity. He had an epileptic daughter, and was possibly TLE or Tourettes himself. I dare say his parents had a lot to put up with, given young William's meltdowns, his adult ones are legend.

I do feel so offended that you are trivializing William Morris' life and struggles of which you apparently know little."

Little you know indeed!!

Watch this space

I expect that this link will have changed by boxing day into something other than a picture of a boozy beggar enjoying a pint of German beer in the middle of Brum.

http://larry-arnold.net/Scenery/wales.htm

The world does not know what it is missing

It is with a shared sadness that I repeat this email that was distributed to the disability studies list by Colin Barnes (professor of Disability Studies at Leeds University) today.

"Dear All

It is with great sadness that I have to report the death of Vic Finkelstein, arguably the most important figure in the history of the ongoing struggle for meaningful equality for disabled people both in Britain and the rest of the world.

As a disabled activist and writer since the 1960s in South Africa and Britain, Vic’s   contribution to our understanding of the oppression of disabled people is unprecedented. In many respects we are all living in Vic’s shadow..

Vic was admitted to Stoke Mandeville hospital on Monday with pneumonia and died peacefully yesterday evening with his immediate family around him (30/11/2011).

On behalf of everyone here at CDS (Centre for Disability Studies) at Leeds may we express our deepest condolences to his daughters Anna and Rebecca. "

There is nothing on Google news about this, indeed the passing of the truly great goes without the faux celebration that the nonentities of this world are showered with. The titled and the rich get their sycophantic obituary pages in the broadsheets. People you have never heard of get knighthoods and silly awards simply because they did the job they were paid to do and were lucky enough to do it in a world of privilege we can only watch and throw up at. Vic did more, he is truly the inspiration for a movement.

We who are aware of Vic's legacy will not forget and we will continue to change the world in order to bring justice to all the "dis enabled."

In 1649, To St. George's Hill....

I thought it was about time I commented on contemporary events and the crisis in capitalism, but as usual I will chose to do so from a historical perspective. Leon Rosselson wrote the song and I am sure given his political persuasions he will not mind me posting the lyrics, and Billy Bragg (amongst others sang it)

The video I include is from Kevin Brownlows film about Winstanley and the Diggers, who inspired the song I reproduce below. The times maybe different but the spirit is the same. The action may no longer be taking place in green fields but in paved squares and busy streets of London and New York, but the response of the authorities is the same. Shame on them today as it was shame on them yesterday!

"In 1649
To St. George's Hill,
A ragged band they called the Diggers
Came to show the people's will
They defied the landlords
They defied the laws
They were the dispossessed reclaiming what was theirs
We come in peace they said
To dig and sow
We come to work the lands in common
And to make the waste ground grow
This earth divided
We will make whole
So it will be
A common treasury for all

The sin of property
We do disdain
No man has any right to buy and sell
The earth for private gain
By theft and murder
They took the land
Mow everywhere the walls
Spring up at their command

They make the laws
To chain us well
The clergy dazzle us with heaven
Or they damn us into hell
We will not worship
The God they serve
The God of greed who feed the rich
While poor folk starve

We work we eat together
We need no swords
We will not bow to the masters
Or pay rent to the lords
Still we are free
Though we are poor
You Diggers all stand up for glory
Stand up now

From the men of property
The orders came
They sent the hired men and troopers
To wipe out the Diggers claim
Tear down their cottages
Destroy their corn
They were dispersed
But still the vision lingers on

You poor take courage
You rich take care
This earth was made a common treasury
For everyone to share
All things in common
All people one
We come in peace
The orders came to cut them down"

Interconnections

Never mind the internet, never mind the "modern" or if you prefer "post modern" world. We all have connections.

Last night while searching for something else I came across Nasa Begum's dissertation. "the burden of care"

The reason why I have a copy is because Nasa was a courteous and responsible researcher and made sure that those interviewees who contributed to her study had a copy. One of them was my mum, and so in turn I inherited that with her papers.

It is sad in many ways, not only that she did not even live as long as my mum did, but for me to be confronted by what was in that research. I had never bothered to read it before, but last night I did. For all the conventional anonymisation I knew which interviewee was my mum, and what is worse I knew she was talking about me. It's one of these times when I count autism as a blessing, and I think there is even a hint at my autism in there, for whilst she describes things that were difficult and embarrasing for her as a recipient of care she says that I would not "bat an eyelid"

Indeed I wouldn't but I have some retrospective emotions to see how much it bothered her to have to receive the kind of personal care that she needed. She was not born a "disabled person" and that's the difference between us, a difference she once pointed out to me. I can accept so much more because I learned so much from her. Then again it's what they call a "two way street" I think quite possibly that I taught my mum a few things about the acceptance of "difference" anyway.

However to get back a blog or two, the one thing where my mum and I are perhaps closest is that never mind all that serious stuff in Nasa's study we laughed together. Pain is such a strange phenomenon that I don't know whether I have more, the same, or less than she did now. She was not a neuroscientist nor a philosopher and I have pretensions to both so that gives me even more to laugh about I suppose. One thing is very clear from my reading and it was painful in the psychological sense. That is the reading in Nasa's study of  psycho-social element of disability. My mum learned in a harder way than I did because I have benefited from her learning.

Before I leave the topic entirely I'm going to generalise a bit, no doubt i'll get four years in jail if I caught doing this, but I have to say this, and turning the subject towards the conventional narratives of autism from a parental perspective, you will often read the "pain" of the mother because the child supposedly "cannot" or does not say "I love you mummy"

Damn it all, I may never have said those words, but did I never demonstrate it?!!!!!!

 The "burden of care" was difficult for us both because it oscillated in different directions, towards the end of her life she understood more, those complications. I did what I did because it was necessary and would for all the world that others would do so and cut the social crap and embarrassment over it.

Harvard Referencing

I do not doubt that I have had a grumble about the necessity for this in the past, however I was recently reminded of a time when it would have been useful.

I was responding to a post in a research list and referencing my memory of an article I had referered to in a report which in turn had referred to a study, all this back in 1987 before google and the internet mind you.

Now that is vague if you want to find the original. My first fault, though I cited the publication back in my 87 report, was that I did not give the issue number nor the date, which means that you would have to search perhaps a year prior to the date of my report in order to get it. Of course it was an in house journal, and whilst I certainly did have copies of it back then, I have long since consigned them to the trash bin to make room for more journals. (I do not live in a library though it sometimes looks like it)

Next problem, whilst the journal referred to a study, did that give a proper citation in turn? Much googling has failed to turn up the original study, but suffice it to say it was undertaken in Los Angeles, sometime before 1987 and it was an investigation of the measures that the transit authority had put in force to ensure that drivers of the adapted buses did not make excuses to leave wheelchair using passengers stranded (lift not working etc.) There was a fair amount of activity in the States regarding accessible transport back then, and it showed the way for us in the UK.

That study is out there somewhere, my memory will not be faulty on that subject. Failing a copy of the journal which cited the study, I could hunt it down in a library if I really needed (I probably will)

But all that would be unnecessary if I had adopted the academic rigour that is forced upon me nowadays. Perhaps I have protested too much.

It's an anecdote that is not irrelevant to world of peer reviewed journals, science and the citations game, because the further back you go, the less rigour there is, it's not just me. What I wrote was adequate at the time for the joint local authority/health group who commissioned the report, it passed muster for the Department of Transport hearing where my mum presented it, and the West Midlands Passenger Transport Executive committee where I subsequently presented it.

The "facts" are that a lot of poorly referenced material has entered the mainstream through such means and anecdotal evidence has been incorporated into later fact without data checking. Not everyone who has referenced something in a paper that has then gone on to be cited again and again has had as reliable a memory for facts as I do and of course I could cite an example of that. I already have elsewhere :)

Oh well, I'm off to Autscape again, and I will be presenting there. It's not so much of a paper, and certainly not academic, as a number of supporting arguments for a general discussion. I will no doubt be making all manner of ad hoc references. They will all be there somewhere to google I expect as I'm not breaking new territory.

Some of the people who have written on the subject before me, have hardly been original either, they can't cite accurately because to do so would expose plagiarism, that is the way our utterances, in the blogosphere, in advocacy mailing lists and I dare say even in off the record private conversations, have been claimed, by the sociologists and historians who have been carefully colonising our autistic world.

I don't even know exactly what I am going to say, I only have a rough map, and I certainly don't know what the responses will be. Exciting isn't it..

Disability Assessments and stuff

Yes I can hear the sirens howling even now that I am one of the intellectual elite studying at a fancy University and I ought not to grumble, but when did that ever stop me. Yes I know my blogs get more esoteric by the bushel (whatever that is?) but heaven forbid I should write anything about "les evenements" and be thought of as a would be looter if I could just get it together to start a "riot" in this rather forgotten neck of the woods where there isn't much left to burn down anyway since the pub went up in flames ages back.

Anyway my sermon for today is taken from Student Finance England. 

Earlier this year, that august body assumed responsibility from the Local Authority for my Disabled Students Allowance.  It's been a bureaucratic nightmare ever since, what with lost papers to begin with, then lost identity numbers and finally not coughing up for the goodies in terms of paying for support that I had arranged and finding excuses not to pay for whatever post grad development course they considered I did not need to go on to the extent that I had to find alternative funding to do the most recent one (I picked up the certificate for completion of that one just today).

So it was decided that the best strategy for me, since things had changed so much since I started Uni (briefly) as an undergrad for what was at the time a rather different kind of course to the PhD I am pursuing now, was to go for a completely fresh assessment, which I had rather late in the summer for convenience, but what the heck.

I thought that would be an easy enough process and it would become much clearer as to what I needed but was it? I have to confess I wasn't any happier with that assessment than the one I had back in 2006 when I was still at Hereward College in rather different circumstances. It still seemed to be rather menu driven and concentrating on equipment and software rather than human support and the additional transport costs I have been struggling with.

Anyway with the aid of my key support worker at Uni (paid for out of the allowance) I was able to amend the initial report and yesterday I got a letter from Student Finance England to say that they had agreed everything ...  but I should be aware that the total amount allowed to post graduates was lest than the full cost of my agreed support. uh-oh :(

Never mind that had I looked more closely at the letter I would have seen that it referred to the academic year 2010/2011. It just so happens as I reported in my last blog that I have registered for the new year starting in October (although the first instalment of my fees has gone from my bank account already) which is the year 2011/2012. So I am mystified now, was that letter referring to what was left over from the budget for last year or what?

Adding to the complications, I had a letter from them today to tell me that I had not even applied for funding for 2011/2012 as they had rejected my form, being as it was the wrong one. Well to begin with I was referred to the website. (which I had trouble logging onto, technical blunders) for a form on line, but the only one I could find was for full time students only. So I asked them (via the interminable phone menu system) twice to mail me out the proper from. The first time they did not respond, the second they sent me the paper version of that same wrong form. Perplexed as to what to do next I sought advice from my key worker, before she went away on holiday and she was able to email me another different form. That was the one they rejected, as it is apparently only for students who are also eligible for a student loan, which I am not. So eventually I got the correct form this morning, which the person on the phone assured me did not need countersigning by anyone else. Wrong again, on checking it, it needed verification from the Uni as to what kind of course I am on. Fortunately I was going into Uni today anyway, so I was able to get that and my car park permit renewed at the same time.

It looks like I'll never see the end of this. It won't be the first time I have spent more time pursuing finances than actual research. I failed to get a competitive scholarship that would have covered my fees for this year, earlier on this summer despite having a very strong case, there is always someone with a stronger one.

And when this is all finally authorised, I am going to have to sort out a lot of paperwork to actually claim particular expenses for which I will have to furnish more proof than any MP ever has done to verify a mortgage on a second home, crooks the lot of them!


And now for something completely different.

This is going to be a long blog isn't it I've not even come to the trial PIP (Personal Independance Payment) assessment that I voluntarily underwent yesterday.

I could say a great deal about this insidious benefit which seems to me to be a ruse to do away with life time awards that could not otherwise be overturned by replacing one form of benefit with another which is purposefully much harder to get.

It won't effect me in reality until after 2013, and probably given administrative delays and legislative drag after 2014 in my estimation, so I hope the assessment will have changed by then. I really cannot say it takes account of autistic needs outside the home very well at all, never mind inside the home as it is oriented mostly towards physical capacity and only if you are too far gone with Alzheimers to know the day of the week. (although when signing the form I had to check both the month and the year eeek!) will you get it on mental incapacity grounds methinks. Trouble is I anticipated that I would be asked to subtract from a hundred in sevens, and told the assessor that was the next question that would be asked. I was correct, I then said it is simple you take away ten and add three and keep going, I may not know what the date is but I am not that daft.

As far as physical incapacity goes, well you might say I am lucky I have a few of those to throw into the equation. (lucky to have physical difficulties, that's my black humour and I did not spare the assessor any of it either) Well it's not much advantage even if the questions are slanted that way as the trick is if you can do whatever task, be that opening a packet, a jar, getting into the bath, with the aid of equipment then you are capable, never mind how you fund that equipment in the first place. Unfortunately I have bath rails, and use tools to open things, equipment left over from when my mum died that I had kept against the day I might need it myself. So despite the fact that I had an unequivocal letter from the Dr (left over from my DSA assesment) detailing certain physical impairments it will probably be score zero.

Other parts were more difficult for other reasons. Answering honestly was difficult when it came to talking about suicide and self harm, because the assessor, although she said that all the information was confidential and would be destroyed after the researchers collate it, she still had a duty of care to ensure that I came to no harm, that made it a little difficult to talk about the plans for suicide and self harm I have made, but in such a way as to put off either event from the immediate, as a coping strategy in fact even if a little bizarre to some folks way of thinking. She even talked about help available from the NHS to deal with my anxieties, but I had to tell her the truth there, if you are autistic it does not apply, you wait months to see a psychologist who then tells you that they cannot offer anything and then stands well back while you rage! I am too well acquainted with the realities, never mind the theory.

Other than that I think it was still important that I did volunteer even if it gives me little hope for myself as to where and how I will be able to get support when I am told by SFE that I need more than they can pay for!!! I think it was a good thing for me to do because afterward I was able to point out some of those things that are difficulties for autistic people in terms of communication and negotiating social networks that non autistic people take for granted. The fact that I have been non verbal under stress and close to being totally unable to understand language written or spoken, even that won't count for anything because it does not happen all the time, nor the fact that I have been so anxious time and again that I have taken myself to hospital emergency.

Well perhaps I won't be able to contain the desire to self harm much longer, because before the next year is out, I will face yet another assessment one I am also bound to fail because I am alive and can still breathe. Yes that is the dreaded ATOS one we all must face unless by some miracle the Government collapses first and takes the remainder of the Civil Service with it.