Sunday, July 16, 2017

Academic without portfolio

It is just over a year since I graduated as a Doctor of Philosophy but my shibboleth access to online journals had been turned off almost as soon as I had submitted. My academic email lasted a little longer, but that was eventually replaced with an alumni one marking the transition from Doctoral candidate to what I have since seen described as "early career academic". That is to say I had transitioned from the highest status  for a University student, to the lowest rung on the professional academic ladder

Indeed it was somewhat strange to consider myself in this position given that I am presently less than 5  years away from age at which I can expect to draw my pension and realism has set in when you consider that only a lucky few PhDs walk into a well paid post doctoral research position within a year of graduation, and that times are getting tougher for academics, what with Brexit, and neo liberalism, notwithstanding that social research into autism is pretty much the cinderella of autism research at this time as the National Autism Project report says amongst many other things.

However am I really an academic without portfolio? One thing is for sure I have no funding to follow my interests further, and have to rely on what tidbits I can pick up in the way of expenses to attend conferences and seminars.

Nonetheless and surprisingly for me, I have kept my hand in, not just with the National Autism Project where I was one of a truly outstanding team of autistic advisors, but with such things as the Participatory Autism Research Collective,  the Shaping Autism Research seminars, and even more surprisingly being invited to present on my Thesis at the Annual Conference of the British Sociological Association. I have also found time to become a research subject (something I swore I would never do again) and seminar particpant concerning autism and the criminal justice system.

Finally perhaps I am not entirely without portfolio, as I after all the principal editor and founder of Autonomy which must count for something.

However in terms of actually undertaking any further research, the opportunities are simply not going to come my way by just waiting and persusing the academic vacancies. For someone like me, who struggles in this world, I have to take the dictum of Hannibal and make my own way, and I think I have actually found one, (which does not include elephants, {in the room or elsewise})

As my blog of some moments ago indicates, I have an interest in diagnosis, it is not a new interest either, as I have spoken on the topic at Autscape and elsewhere before, particularly in terms of what means for identity, the contradictions of it all notwithstanding.

I think I have a very good opportunity to put together a research project, for which there is currently no funding, but would not either be impossible to fund or undertake, and as with all good criminals, I have both the motive and the opportunity at the moment, so it is all looking up.

Thursday, July 13, 2017

Disentangling diagnosis.



Diagnosis is a difficult concept for the radical autist to deal with. It is so enmired in the medical model (which for people like me serves only to identify and remedy where possible broken bones and physical maladies) It has always seemed wrong to me that Doctors of Medicine (who are not even real “Doctors” in the sense that I am, Doctor being merely a conventional appellation, but I digress) that Physicians, should have such a powerful goal in gatekeeping those important definitions that have an impact both on selfhood and on social and legal “realities” in the world beyond that having nothing whatsoever to do with bed rest, medication and surgical intervention.

A lot of us talk not about diagnosis in our personal self constructs so much as about discovery. Diagnosis from the Greek means a learned opinion, discovery means the uncovering of something that was not known before, and usually discovery leads to  change in some way or another.
I am not sure Martijn Dekker agrees with some of the things he wrote about many years ago when I was on that discovery path of exploration but they meant something to me then, so I keep the ideas alive. The ideal was of peer validated diagnosis. In common speech you might put it as “it takes one to know one” or you might see it as the Autistic analogue of Gaydar. (Which incidentally I wrote about in my Thesis) for to me the diagnosis wasn’t enough, I wanted to know other people like me and to see if we really did have anything in common beyond the label, and I think we do.

However from the realm of ideal societies and utopias to what can really change, there is certainly a clear and present problem that is being exacerbated by Austerity.

A recent quick survey of the news revealed these two articles. . https://www.tes.com/news/school-news/breaking-news/plans-restrict-autism-diagnoses-will-increase-pressure-schools
http://www.newsandstar.co.uk/news/10-month-wait-over-autism-appointment-fd8bec53-eea5-488d-8511-39315ca1ad85-ds

Those concern children, but believe you me, the failure to discover the inner autistic is going to have a major impact on that childs education and everything that follows after that.

For adults it is no better, there is a movement, not a new one alas, but increasingly justified by the bean counters that there is no point in referring adults for diagnosis when there are no services available for them. You could say it is a total dereliction of duty, given that the NHS at the moment whether or not they are the right or wrong people to administer the diagnostic process because they are at present the de facto gatekeepers.

What I am ultimately coming to is the change I would like to see, and the change I would hope I can influence in some small way, and that is the demedicalisation of diagnosis that is actually possible within the current constraints of our society, without having to evoke those revolutionary changes towards the ideal world, where like in William Morrises Nowhere it never rains.

I think at the very least that Autism is within the capability of a decently trained psychologist to evaluate, indeed at a practical level you don’t even need that prior qualification (other than as a socially constructed gateway) to train in the current diagnostic schedules, lay people could easily do it.

Dyslexia and other specific learning difficulties (to use the conventional terminology whether I approve of it or not) have long been the domain of suitably qualified education psychologists to evaluate, Autism isn’t any more complex, and if you say it is, well you know if you identify in the course of the process something that needs another specialty then of course you refer to it, just like an optometrist who comes across glaucoma or macular degeneration in their practice.

I am writing this because of what I know about processes going on in the NAS at the moment, and I want to be both a catalyst and a part of this change. I am hoping if I am given the cold shoulder, that you will all be behind me when I come back from the ropes for another round of boxing.

Watch this space folks, Dr Larry is back in the blogging business.

Wednesday, July 12, 2017

Twenty years ago today (12th July)



This is a significant day, as this is the twentieth anniversary of my mums passing, and rarely does a day pass when I do not think of her, but she is a long way away now.

I look with regret at a world that seems to be going backwards, as so many of the rights she fought for are being disregarded by Governments obsessed with penny pinching austerity and to heck with the lives of the people who depend upon them acting with equanimity on matters of equality instead of rushing ahead with knee jerk policies without a proper audit of the consequences.

Still what does it all mean to me, I am a changed person, I have not abandoned the fight but I have done something neither of us would have dreamed of back in the day, that is I got my doctorate, and I earned it with a piece of research that fully recognised the participants as my equals.

My mum I hope is not only alive in my memories, but in my activities, seeing through my eyes as history gives way. I wanted to do right by her, not knowing what I meant by that phrase, and I think I have. She was only a couple of years older than I am now when she passed, and she was beginning to engage that academic world I since took on, in delivering a lecture to a group of masters students at Warwick University. I was not allowed to listen to that, but I prepared the slides for her. Back then it was transparancies. 

Here is the text of one of them:

Discrimination then, is any act which diminishes a person’s status, rights to do anything, or go anywhere which would be normal for a person in similar circumstances without the impediment of: disability, race, religion, gender, sexual orientation or class, which are cause of prejudice.

She was ahead of the game in the intersectionality of rights, and I wish she had have had time enough to follow the academic path I have.


Tell me not, in mournful numbers,
Life is but an empty dream!-
For, the soul is dead that slumbers,
And things are not what they seem.

Life is real! Life is earnest!
And the grave is not its goal;
Dust thou art, to dust returnest,
Was not spoken of the soul.

Not enjoyment, and not sorrow,
Is our destined end or way;
But to act, that each to-morrow
Find us farther than to-day.

Art is long, and Time is fleeting,
And our hearts, though stout and brave,
Still, like muffled drums, are beating
Funeral marches to the grave.
               
In the world's broad field of battle,
In the bivouac of Life,
Be not like dumb, driven cattle!
Be a hero in the strife!

Trust no Future, howe'er pleasant!
'Let the dead Past bury its dead!
Act, - act in the living Present!
Heart within, and God o'erhead

Lives of great men all remind us
We can make our lives sublime,
And, departing, leave behind us
Footprints on, the sands of time;

Footprints, that perhaps another,
Sailing o'er life's solemn main,
A forlorn and shipwrecked brother,
Seeing, shall take heart again.

Let us, then, be up and doing,
With a heart for any fate;
Still achieving, still pursuing,
Learn to labor and to wait.

Henry Wadsworth Longfellow


Thursday, June 29, 2017

Latter day musings on being part of the community

I have always tried to be engaged in the community, even though this seems to be something that runs against the natural inclinations of an autistic person who finds engaging in social relationships somewhat difficult, but I have an over riding sense of moral responsibility, which I have to say I do not always enjoy.

After my mum died, I continued my involvement in those organisations and causes that were dear to her, albeit not everyone agreed that I should be her natural successor, and indeed I lacked many of the qualities she had.

Closer to home though, in my local area, I did engage very much with local health issues and tenancy issues, but over time I moved on to other things more related to autism, and I think that left a gap.

In my latter days I have become involved locally again, being chair of the allotment association, and also the local ward labour party, not because I particularly enjoy doing either, but because I could see that somebody needed to do these things as I don't think anybody ever comes to choice and most want to avoid the role.

There are aspects I enjoy, I did enjoy campaigning for Labour during the recent Mayoral, and General Elections, and yes there is comradeship amongst campaigners. The allotments are more difficult though, it has been very tough having chaired two very different committees and not necessarily sharing the opinions of those who are more eager to have a water supply at any cost than others. It is difficult being neutral and I can't say I have always been a success.

The worst of it all is that it takes up my time when I would rather be doing other things, and the same with the NAS, as although initially it was good to have an excuse to go down to London with someone else paying my train fare, it is not much fun now as I have never been very good at claiming my expenses and inevitably end up funding more of it myself than I need to because I do not have the MP's expertise in filling out claims forms and inventing expenses.

Another of my more recent involvements has been with the National Autism Project which was always going to be controversial, that has meant additional journeys down to London which for the record, I do not find travelling by Virgin Trains even when I reserve a seat, comfortable to do or without anxiety. It has not been plain sailing either, and it was touch and go whether all of us would remain on board for the Autism Dividend report, but we did, and perhaps the greatest personal highlight for me was speaking at a House of Lords reception, as the last speaker, after the Minister for Social Responsibility who was doing the usual politicking, and the challenge for me was remaining polite, but I did. Marcus my brother on seeing the pictures said I looked like Fidel Castro!

Well now the election is out of the way I hope I can spend a bit more time pushing that particular cause through my political networking.

Oh well Autscape creeping up on me, and this time I shall neither be staying on site or locally, I expect I shall be travelling down each day. It is also the first time ever when I made a proposal for a presentation that was turned down. Not that I mind too much, it will be a full schedule of presentations and it is less for me to worry about.

Monday, May 16, 2016

A foreign country



Once upon a very long time ago in that foreign country that is called the past when English (and I expect the Scots and the Welsh and Irish were also called "English" then) would play Cowboys and Indians, and Cops and Robbers with no hint of guilt associated with any of those roles (Doctors and Nurses notwithstanding). In those days of Harold Wilson's white heat of the technological revolution and MacMillan's  wind of change blowing through Africa it was a common question to ask any child of primary age "What do you want to be when you grow up?" Well notwithstanding a temporary glitch where I wrote of my ambition to become a rag and bone man in an essay (Steptoe and son was popular at the time) the cliche was that every boy wanted to become an engine driver (this is pre diesel) and every girl wanted to become a nurse (well my mum when she was a little girlie did and she nearly was as well which is another story)

As we got a little bit beyond junior school it was the talk in the family (and pretty much fantasy when you consider the chances of it ever happening) that Marcus would become a doctor because he was interested in nature and biology (to the extent that children brought him road kill to dissect) and I would become an Architect (or Town Planner) because that was my fascination.

The nearest I have ever come to Architect is with my shed and greenhouse building but I did at least achieve some brief influence on the City Plan when phrases that I had originated were adopted during a process of negotiation around objections.

Well be that as it may, Marcus never became a doctor, indeed like me he crashed at the time of taking our A levels and the best he could do at University was a joint honours in geology and biology that he subsequently dropped out of.

By the time I got to Uni, I had also long forgotten my ambitions to become an Architect of Corbusian shining cities even if I was on the Universities building committee dealing with much more mundane concerns such as the infamous white tile problem with Yorke, Rosenburg and Mardall's grand design, and the need to renew the subterranean heating system which was causing endless problems (New York in miniature)

I digress and short cut to the future, that is to say the present. It is ever so funny, that on a day today when my doctor (MD) congratulated me upon becoming a doctor (PhD) I am reminded of all this. Marcus himself doesn’t quite know what to make of it in that he has said to me “but I was the one that was supposed to become the doctor”

I guess in time the novelty will wear off, I will get used to the routine that this is my title now and I have earned it. Perhaps I will even find something useful to do with it, but for now I can still be somewhat incredulous that I got here.

Sunday, April 03, 2016

Anxiety

This is my first post as Dr Larry Arnold, yes I made it all the way through to the end, but not without a huge amount of anxiety on the way, so this post is about anxiety, anxiety and autism I suppose.

I would like to list the three greatest anxieties in my life, in order of the most troubling. This is not necessarily the way you might expect an autistic person to list them, but it is the way I do.

1. Financial worries.
2. Health
3. Social concerns

Yes, as a card carrying, diagnosed and dumpster diving autistic, social concerns are only number three, but why?

Number one is my financial state, I think it always has been, but it has certainly got more precarious in the last decade or so, particularly as I have been accumulating debt as the consequence of pursuing a doctoral degree without the background of a lifetimes accumulation of savings from income.

In the current environment it has got worse as my income is getting smaller as a result of cuts to benefits, and even what I have is threatened. Bankruptcy is a real threat, being unable to meet the ongoing debt payments is a real threat. Any unexpected bill is a struggle to meet and it will only take a perfect storm of unwanted, but not necessarily unlikely events to bring that about. Why is it worse for me because of autism? Well that is simple, because I am at a severe disadvantage in the employment market, at 60 plus a doctoral degree is not going to help a great deal there, but hey, for better or worse I am a PhD now.

The second of my anxieties is health, again it is not to be supposed that this is something that diminishes as one ages. Indeed as I age it becomes more of a problem, and whilst this is the case for neurotypical folk as well, the difficulty in being autistic and poor is that I can neither afford those things that the health service will not provide for free, eg physiotherapy, or am I capable of negotiating a proper consideration of my overall needs with the NHS because of the third of those anxieties which I am coming to.

Social anxieties.

Covers a multitude of things but they are not threatening me as much as the two above, however they are part of the mix.  I am anxious because I do not know how to deal with unruly neighbours, and I am anxious because of my responsibilites as chair of the allotment association having to deal with unruly meetings and a whole lot else besides.

These social anxieties may not be the most debilitating, but they certainly contribute to my difficulties in dealing with the other two.

Social security?

What does it mean, well it ought to mean that people like me have some security in our lives, that our homes are not threatened, that our basic wants are not threatened, and indeed for all too many of us, our liberty itself is not threatened as the number of us that are detained under mental health provisions far from "home" is not insubstantial.

Give me a day tomorrow which was like the day today and that would be better than anything Omar Khayam can offer anyway, because that is the way I like it, that I can look out of my window on the same world and feel safe in tha.

Give me a fair chance to use my skills, but you don't do you, no not the employers, the law makers, the councillors and counsellors, and least of all the geezer on the number 10 buz.

Just realise that I have given as much as I am capable of to making this world a better place and to helping my fellow, so I think after that I do deserve a little consideration.



Friday, November 13, 2015

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.