Wednesday, June 27, 2007

The one eyed King welcomes the one eyed Prime Minister.

At last we have a new Prime Minister not only is he one eyed, but he has been accused of being autistic (in an unfortunately pejorative sense) too. (click on the link to find out more).

Well Gordon, when your predecessor came to Parliament in a landslide victory I posed ten challenges about what he was going to do to redress the balance of the previous Governments misrule over disabled people.

I shall pose again those ten challenges from 1997 with a summary (in red) of what has been and what remains to be done:
  • 1. Immediate and emergency action to ensure that the Lords decision in the Gloucestershire case is invalidated. That is we demand a restoration of a needs led absolute duty upon local authorities to provide the care in the community
  • This was never reversed and today the situation has worsened to the degree that local authorities continue to be able to evade statutory duties on cost grounds.

  • 2. The government to take whatever fiscal means are necessary to ensure that local authorities have the resources to spend on care/adaptations and assurances that these funds will be ring fenced so that they cannot be spent on other non related services.
  • Goes without saying that it has not!
  • 3. The introduction of new regulations giving statutory powers to the Disability Council to pursue and where necessary prosecute cases of discrimination, on the lines of the equal opportunities and racial equality commissions.
  • The disability rights commission replaced the Disability Council, but now we will lose that within an overarching equal rights body which has already been criticised for weakening the force of what legislation we have.

  • 4. The Immediate implementation of remaining sections of Tom Clarke's 1986 Services and Representation Act and an end to the delay in implementing the extensions to part M of Building regulations to include housing.
  • It never happened, instead we had the Community Care act, not essentially focused on disabled peoples rights and not leading to adequate assessments or provision. Jack Ashley has recently proposed a new private members bill but will it be allowed to progress?

  • 5. The government to bring forward the dates for implementing next stages of Disability Discrimination Act with regard to the duty to make adjustments and the introduction of transport regulations.And to allocate finances from the millennium fund to facilitate this as the only proper and lasting way to mark the new millennium.
  • We had to wait long enough, but the final provisions are now in force.

  • 6. An Immediate review of recent social security regulations which have had a negative impact on disabled people. including the scrapping of housing benefit cuts for single people under the 60. an overhaul of the incapacity for work test, payments of DLA mobility whilst in hospital, restoration of full backdating of benefits and last but not least revision of the rights of appeal which have been steadily loaded against unrepresented appellants.
  • It has only got worse with new legislation once again penalising and victimising disabled people as work shy and scroungers.

  • 7. Parliamentary reform to ensure that private members bills relieve a proper hearing and are only ever defeated on legitimate grounds not the ruritanian procedural farces we witnessed all too often under the last government.
  • There have been some Parliamentary reforms including the abolition of hereditary peers and some of the stranger procedural customs, but private members bills such as the Independant Living Bill refered to earlier, still face an uphill struggle against official business.

  • 8. Reform of the legal system to ensure that individuals are given the resources to challenge government and local authority decisions quickly and easily whilst limiting of the scope for local authorities and government to involve individuals in lengthy and potentially expensive appeals to a circus of higher and more remote courts. A Courts judgement should stand and should only be counter challenged in exceptional circumstances if a judge in a lower court does not have the legal knowledge to make such a decision, then that judge is unfit to be in office.
  • No way :( do you think the judges and the lawyers would ever agree to universal access to justice? Legal aid reform has neither made access to law easier for the disenfranchised elements in society nor reduced the exorbitant fees that lawyers charge for doing less than it takes me to write this blog.

  • 9. An end to the massaging unemployment figures by inappropriate use of poorly funded and administered "training courses". Everybody should have equal access to suitable training without it prejudicing their rights to benefit and forcing them into unsuitable and short term expedient courses or low paid work.
  • I am not sure about the figures, it is not like it was under Thatcher, but the quality of training has not improved one jot, is equally irrelevant and poorly administered by companies who milk the nations taxes to merely massage the figures.

  • 10. Finally if these demands appear to be overtly political so be it. Charities should have the right to engage in the full political process without restraint. If it has become apparent that one or other named political party has become inherently resistant to the principles of equality and human rights which the charity stands for it is both a duty and a right for that charity to actively engage the issue and not step around it for fear of incurring the wrath of the charities commission.
  • Hear hear to that, we still labour under antiquated Elizabethan throwback charity law which was not designed for the modern age. It is about time the old categories of charity were simply abolished and replaced by a simple European wide registration category for not for profit non governmental organisations which would allow overt political challenge to the status quo in any European state without compromising tax advantage, so long as they were genuinly organisations for the welfare of Europes citizens, controlled and directed by the categories of people they represent. Yes NAS unless your policy is set at top level by autistic and neuro diverse people, you should pay a tax penalty !!! That is not force, that is incentive...

Friday, June 22, 2007

The reality of my autism.

I have often used the phrase, running up the down escalator to describe the way my life seems to be rushing ahead to stay still.

Amanda Baggs has portrayed the reality of her autism in 'Getting the Truth Out'.

The reality of mine is rather different as this article shows. The article is not real, it never appeared in a newspaper, I just made it up to look as if it were a proper article a few years back now when I was studying media, not a bad attempt at getting inside the skin of a journalist eh? It was the same time as I made this following video for the same course which is now on youtube. Unfortunately for me even though my life is full of positive goals, not a lot has changed in my environment since then, the flat is still condemned with the date being forever postponed.

No my life is not like others who are totally isolated either for I have a very active outside life with my academic work and my work for the NAS and other groups and that is the problem.

It all came to breaking point not very long ago as I have blogged, when I faced total psychological collapse, and I am only just bringing myself back from the brink and can see the stress building up again.

The problem is not that my support is breaking down, it simply is not there.

I live as the article portrays, in environment that is totally unsuited to me, in a flat which I cannot properly maintain in order or cleanliness, which is altogether the wrong place for me to be in terms of size, location, and state of repair, threatened as it is with demolition with no prospect of having anywhere more suitable to move to, which really meets my needs, because replacements are not being built fast enough, and nobody is building autistic or disabled friendly either. Three flights of stairs daily is getting to me.

Not only that the mechanisms that gave structure to my life when that was written are not there either, the mechanisms that ensured I ate regularly and healthily for instance.

Here I am making plans for the future, to stay on top of the world of autism, making an input into it via research and advocacy and I can barely keep myself going at the same time.

I am fearful of another collapse and it does not take much.

People only ever see the public aspect of me, whether that be at meetings, or at tutorials, at conferences, or through my writings on the internet.

You don’t know inside of me at all, and yet the hypocrisy is there all over. If I have the slightest failing in the way I present myself to the world, I am hammered for it because I am not allowed to refer to my autism as any kind of limitation or stressor. For it is not the limitation of autism per se that is difficult but the stress of functioning beyond its limits without anyone being prepared to accommodate for them.

I am either considered too intelligent to use autism as an “excuse” or damned if I do for "malingering" and for wanting an easy ride out of the pit I have dug myself into, or then not even allowed to play the autism card at all because that would be considered to be patronising me. Well equality is not ignoring the condition, it is taking proper account of it and creating a "level playing field"

Whichever way round when society has labelled you with a disability (which need not necessarily be autism) you become a performing circus trick as my mother did before me. A public property whose popularity depends upon perfect performance every time since the audience allows no in betweens, once you fall off that tightrope the mob will turn on you for letting them down. (viz my recent savaging at the hands of the autism hub

But the article concludes by reference to the Human Rights I want;

That is all that Larry wants, not charity, not tear jerking human warmth stories but the right to make his way in life on equal terms with the next person.

Monday, June 18, 2007

Forks in the road or "whosever diggeth a pit shall fall in it."

Those of you who know my main website will know the poem that introduces it which really sums up my life.

I am at another of those forks and don’t yet know the consequences but it reminds me of the way my life and career has been shaped by all those forks in the road going way back.

What brought on this bout of reflection was the necessity of filling in the same questionnaire I filled in back in 99 before being diagnosed in 99 and here I am, having been referred back again to the same department filling in the same questionnaire (of which more later)

Any way it has been a tortuous path to get to this particular fork, but each turning has confirmed the direction I would inevitably go.

Right now I have given up the chance of completing a Masters degree because of the cost. That leaves another pathway, either nowhere back amongst the plains, or a steep path up in the mountains barred by a high stile. If I get over the stile I go on to a PhD but if the stile is too high I end up back in the plains, whereas following the Masters route might have possibly got me to the PhD eventually via a longer route but without the particular obstacle I do not yet know if I can surmount.

But enough of that. My ways had actually been set long ago. I know more than ever where I want to go now and what stands in my, but back when I was eleven or twelve how was it?

Back then I thought that one day I could become an architect, my passion then being for drawing plans of houses, shopping malls and whole cities, never mind the odd cathedral or skyscraper.

Even before then my destiny had been set for I went not to a grammar school but a comprehensive. Well I don’t think I would have survived in the hothouse atmosphere of a grammar either, but that would have been another story.

And so it was that by the time I was twelve I was already being pushed in directions that were not what I wanted. I was not allowed to take Art beyond my second year or Technical drawing as I was not considered to be technically accomplished for either of them.

Even so if I had followed those courses I would still have been frustrated further down the line by a failure in A level maths since entry to a technical subject like architecture would have required something more than my dyslexic creativity alone allows.

Indeed I took a path that avoided A level maths and because I was a good mimic and seemed to do well in French and German I was pushed along the path that led to failure in languages instead as they became more advanced and bogged down in grammar.

I took a notion, then that I would be a lawyer and I might have been a good one for all I know, but by the time my A levels came I failed to get the grades necessary to take me to a good law school. It was already too late, so even though I got to Uni by the back door, through clearing for a subject that was related neither to law nor architecture, I was still without a maths A level in a subject that really demanded one. I got by on the condition being that I took an equivalent maths course at Uni, until you know what? I failed it L

So there you go obstacles were waiting there for me whatever road I took. Would I have passed my law exams if I had managed to get on that path? Probably not any more than I was able to pass my finals for politics and economics, the time wasn’t right.

Well so you see, decisions made on my behalf without understanding what my educational difficulties or strengths really were and the lack of knowledge regarding how dyslexia and unrecognised autism impacted my education governed so much of the future.

It could not have been much different I suppose for any of my generation of less obvious autistics. Society had got it in for a lot of folks and school was not so much about education than about being forced into social conformity whatever conformity was expected of your particular class, race, gender or neurological configuration.

And so fast forward to another fork in 1999 when I had to fill in that psychological questionnaire, that eventually led to recognition and diagnosis. I was in different situation than I am today, I was broken under the weight of circumstance and clutching at straws. I had managed to persuade my GP that I should be assessed by a psychologist rather than a psychiatrist, but I had the feeling he was only humouring me, expecting I would be back for a more conventional dx of sommat narsty in the woodshed.

I am cognisant of Amanda’s recent post about power relations and inequalities. Back then in 99 I was still afraid of what the system might intend for me, I had the spectre of Schizophrenia to afright me. Yes I remember all those old forgotten posts that others have affected to find, about Amanda’s past too, no big secret.

In the interim of awaiting a diagnosis I allowed myself to be prescribed an antipsychotic (Risperidone) and nearly succumbed to allowing a cocktail of psychotropics as it was suggested I supplement Risperidone with an antidepressant since it was doing nothing for my depression (and what else would have been a chaser to the side effects of the antidepressant I wonder if I had given in and not said enough is enough)

Well it is interesting that this time I have reached the same point via the psychiatric route and have been referred back to the same psychological services who diagnosed me with AS.

To be honest I do not think the diagnostic process back then was a good one, I was very afraid of the system and not as open to talking about things as I am now It was not the psychologists pronouncement that finally convinced me I am autistic at all, but what I have learned since from my peers and from my studies that convinces me that in spite of the provincial ignorance of one Digby Tantum's disciples (he is no friend of mine I can assure you) the dx was not wrong.

Today I feel the power relationship is different, even at my lowest ebb having been temporarily admitted as a psychiatric emergency and communicating via my laptop, I still had more credibility than I had as the flotsam of the system I felt myself to be in 1999, a lot has happened in between.

But what of all those who are still the flotsam and jetsam in this turbulent sea of psychiatry and psychology? What of all those who are wrongly diagnosed with psychotic conditions which then become an iatrogenic self fulfilling prophecy like the case of Piers Bolduc?

Now we have (not so) new mental health bill being debated in the commons in the teeth of opposition from nearly every mental health charity where the Lords amendments will be rejected because of nothing more than a Government's fear of the fear and prejudice of the people who they think elected them to make our country safe from "psychos and Muslims".

And who will it be tomorrow, cyclists and vegetarians perhaps?

Will the new mental health bill when it is inevitably made into (bad) law like the dangerous dogs act, prevent injustices like that suffered by Piers Bolduc, or will it make it all the more dangerous for all of us.

Does anyone care, when the autism debate seems to have trivialised itself and been caricatured into lame arguments about chemical causation?

Who is blogging about our human rights?

Never mind forks in the road, someone is digging bloody great holes and pitfalls in it.

We are a small axe up against a very big tree. But when it falls let us hope the sound rings around the world.

Wednesday, June 13, 2007

A reply to lies and calumny

It should not have come to this that I have to start a war of blogs because I am not allowed to reply to an untruth on a particular blog.

However the record is this, with respect to the journalist that Kevin Leitch alleges I did not contact, I have specific proof which I can furnish to anyone who contacts me privately that not only did I contact Emine Saner of the observer (if this is who Kevin means) and spoke to her on the phone, but that I have a transcript of what I said which she returned to me.

So now let the public judge, whether Kevin Leitch is acting the dictator in all this. He is not interested in any olive branch because he has made an open statement in an arena he controls against me and has not allowed me nor any body else who mentions my name right of reply. It seems that the parallels with Animal farm are all too real.

Where are your fine principals now Kevin ? I have hurt your ego, and you react like a spoilt child.

Do people now see why we must set our own agenda and reject those who purport to be our allies but are full of contempt.

And might I add that Kevin has gone back and deleted my replies to his various assertions on his previous blogs, that is total control freakery and suppression of anything he wishes to cover up.

Do as you would be done by Kevin, you have lost the argument for sure and I don't think too many people are convinced by this any longer, that I have suddenly become more of an enemy to you than John Best Jnr !?, there is something very very wrong if you regard me in that light.

Thursday, June 07, 2007

The Citadel.

This September may be the first time in 8 years when I am no longer able to record my status anywhere as a student (at least officially anyhow) in that personally I have little hope of actually continuing my studies even if the PhD proposal I completed today and submitted is accepted.

Indeed for I would be banking on rather a lot to expect it will be, never mind that I am still way behind in the completion of my PGCert

So rejection will be my fate, some things are insurmountable.

It shouldn't matter, because I won't be the first, indeed there have to be thousands of us who are academically able who can't study, indeed thousands who don't have my abilities who should not be denied the right to study at the level that is right for them either.

Why does it matter?

Well it has been my objective, to give academia a kick up the backside too - for being too busy doing something about us without us. So that when I ceased to study those things I am most able at, in the realm of the senses, art, video, music etc. and turned to autism itself, I wanted to change the way that autism is taught about, to deconstruct the very writings and learning materials themselves to expose that they are not objective, that they do come from a perspective.

The day I yelled at Amaral not to use the cure word, I hope he got some sort of a message. It was not a scientific deconstruction of the work of MIND for sure, because that was even easier to accomplish than shouting at him, being as his methodology did not stand up to scrutiny any more than his obliviousness to the offence of his terminology.

However I would much prefer to challenge the ignorance, the 'para science' of these esteemed self perpetuating monarchs of the genre, on their own ground through the peer reviewed journals, but to do that I have to establish myself by the same standards, and that takes not only ability but serious money.

Yes sometimes credibility is the name of the game (unless your name is Geier that is), and it is something you have to earn playing by a set of rules that has you 'handicapped' in the old original sporting sense, from the outset.

If you google on my name, the para scientist Larry E Arnold is chasing my tail. I am in the wrong game for sure.

I have said in my DVD that beyond the so called Triad of Impairments, there is a sociological Triangle with autistic people at the base, parents on one side and academics/professionals on the other.

Now in the war of words, the talk about autism, the parents and professionals alike owe there right to speak on the subject to our existence, for if we were not, what would they have?

I am at the base so I can kick away at the two sides equally. Yes I have kicked at the patronising assumption that parents have as much right to this debate as we have, and yes I also kick at the ignorant assertion that the professionals and academics have any more rights than the parents to define the phenomenon of autism and how it should be studied.

Nothing about us without us. Dr Temple Grandin has her doctorate in Animal research. I want mine in Autism itself.

Sunday, June 03, 2007

I resign from the Autism Hub

I no longer wish to be associated with a forum that cannot take criticism from within.

I no longer wish to associate with any cosy self congratulating world that does not accept the outsider.

I wish to be free to say what I will without any thought of that being associated with a particular "party line"

There are many more autistic blogs out there, than are represented by the hub, and for sure a lot of them I don't agree with either but what is wrong with that, let a hundred flowers blossom!

I will let my blog free float with the rest of the autistic blogosphere.

And my final word - Neurodiversity as a concept arose within a wider disability movement, it does not belong to Autism alone.

Two sides of a very particular argument are distorting the image of what disability means in a wider societal context where autism is just one construction or label pertaining to the way in which people are discriminated against, devalued, disenfranchised because of bodily and neural differences.

Friday, June 01, 2007

You can't make an omelette without breaking eggs!

Continuing the Russian revolutionary theme ... (Animal farm was a parody and criticism of the way the Russian revolution ended up in tyranny) I offer the above quote from Lenin. Doubtless some scholar will tell me the quote is a mistranslation of the original Russian and meant something utterly different.

Others will tell me Lenin is not exactly the sort of role model to be quoting anyway, so I will quit that and go to Socrates instead who described himself as a gadfly stinging the Athenian conscience, and look what happened to him :(

The point is, if you are going to make progress in overturning established ideas and ways of doing things then you are inevitably going to upset somebody and that is not necessarily a bad thing.

There are various reactions to blunt criticism, both of them probably involve feeling indignant about it.

One is to slough off the initial knee jerk reaction to having ones ego punctured and realise that if nothing else it drew ones attention to the situation in a way that a subtle softly softly approach would not.

The other is to re-inforce ones prejudice by resort to ad hominems wherein the affronted folds back into there secure world and considers the critic as that nasty piece of work they thought they were all along.

I expect there are both kinds of reactions to my last blog, and so be it, I am not here to be in a comfort zone either.

And if I have broken a few eggs in the process, well my advice is to move on mop up and enjoy a nice omelette.

I suspect however as the pig that walks on two legs I am reverting too much toward my four legged origins and breaking eggs is not going to save my bacon so to end with another quote, from Jethro Tull this time :-

Really don't mind if you sit this one out.

My words but a whisper -- your deafness a SHOUT
I may make you feel but I can't make you think.
Maybe that is all I am "Thick as a brick" :(