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.

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  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.

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

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  Laurence Benjamin Arnold Really what is the point

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  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.

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  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!!

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  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.

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