Sunday, October 25, 2009

Five and Four make nine

Just as the 29th of October will be the tenth anniversary of my diagnosis, tomorrow (the 26th as I write this) will be my 54th Birthday, and I recall some problems during my 53rd, not the least I demonstrated how innumerate I am by adding 5 and 3 together to make 7 :(

Oh well this last couple of days has not been too brilliant either. Yesterday I managed to scrape the paintwork on a parked car as I tried to manoever my tank of a 4wD into a tight parking spot in a supermarket, I thought I was too close to the car on the other side and when leaving more room for that one, managed to catch the side of the other one with my politically incorrect bull bars.

Oh well I don't know what that is going to cost to put right, but I expect a phone call at any time to tell me how much I owe for a paint job. Just when I am desperately short of cash as it is.

At least I gave the car owner my proper address and phone number, but not everyone does this, as later in the evening, (I presume it was overnight) I seem to have fallen victim to another motorist who can't judge distances, as I got up this morning to discover my door mirror had been smashed against the side of my door. I am not even sure I can get a proper replacement for that, I shall have to fix an odd one, like I did on the other side, (that's two of them gone now) but I suppose if I do, they will at least match again. Though it is exceedingly annoying to have to drive out to the only sort of place that keeps suitable mirrors in, and then fix it on.

Apart from that my video experiment is very close to launch. For all of those who filled in the first questionnaire what must be more than a year ago, and have watched for any signs of life, it will soon be so, after my supervisor gives it the final approval.

Tuesday, October 20, 2009

Never the same water twice

October 29th 2009 marks the tenth anniversary of my diagnosis.

Much water under the proverbial bridge, and I question whether I am the same person I was in October 1999 (or any other time for that matter)

Well in one sense I am. I am a continuity since childhood of certain characteristics, physical and neurophenomenological that govern the way I react to the external world and the way it will react upon me. However in another sense because the world moves on and one cannot step into the same river twice I am not the same. The environment one lives in, the circumstances one finds oneself in, all go toward moulding the person as surely as the set of characteristics one has been dealt to begin with.

Not all of the times in those ten years have been good ones, and my blog is also full enough of bad times when I have felt really bowed down by circumstance.

To begin with ten years ago I was much shaped by those circumstances, still reacting to the death of my mother, and the personal misfortune of finding myself after a failed business venture on the job market, heavily disadvantaged by fortune and circumstance both.

At the time my diagnosis came as a relief, it got me off the hook so to speak for various things which I had been 'taught' by society and my peers were character flaws, which if only I tried hard enough I could work on.

However at that time I did not know much about Aspergers syndome and autism, and I was on the first rung of my ladder of understanding. Much that was available on the internet, in books and articles was pretty negative about the impairments and limitations of being on the autistic spectrum. I sometimes felt like they were not describing human beings at all, and it was depressing, not only to be like that, but to be thought of like that.

Fortunately I had the experience of the social model of disability to guide me, so I did not fall into the trap that so many other have fallen into, of simply identifying themselves with the medical model traits of autism and internalising that as something real.

I thought this is not the be all and the end all of autism, there is much that is not described, there is much that is unknown, and I will not be limited by the descriptions of what I can't and never should be able to do. More than just rebelling against that I had an inner desire to change it all, and I started with the NAS.

Now the NAS was not the same organisation of today, soon to be celebrating the passing of an autism bill. It was an organisation stricken by financial crisis and debt, and I expected that organisation, which still did not accept me as an equal to the parents who had formed it to do something for me to improve my position in society! Well 'no' that was never going to happen so I got involved. The rest is history.

I am a different person, as much as the NAS is a different NAS, and the field of study of Autism is different too, adults like myself have contributed to that, with our writings, our videos, our activism, as much as we have been research fodder for the scientists.

One thing I was never going to do though, was to become a self narrating zoo exhibit, to merely parrot the impairments and relate them to my 'sorry' state. I have to own that Jim Sinclair, was a big influence there. I wanted to change things, and if it meant going back to college and University in the process, to gain the knowlege and the qualifications to be taken seriously then I was going to do that, and did, never mind the financial cost and the struggles that took in social terms.

Would we be able to celebrate the passing of an autism bill, had I not taken the actions I did when I did? Who knows? I think if there were to be a bill without my having existed on the autism stage it would be very different, more swayed by the kind of garbage that comes from Autism Speaks, with the emphasis on 'defeating autism' and useless research that is leading in the opposite direction of anything that is of practical benefit to the here and now, never mind the future.

Perhaps I did make a difference, and for some terminator to go back and change history so I did not exist might mean it neverwould have happened, but then again I think I can safely say that for everyone else that had a hand in making these same changes it has been a team effort, not only those on the inside of the tent pissing out, but all of the sometimes raucous mob on the outside pissing in.

Perhaps now it is time for me to be on the outside pissing in again, as the air inside the tent gets foul after a while not to take a metaphor too far :)

Wednesday, October 14, 2009

The Lord is my Rock and Salvation

When life is shit, God is still good!!

Never mind Maggie Thatcher (who perverted the words of St Francis) and her bastard son David Cameron:

All Creatures Of Our God And King

All creatures of our God and King,
Lift up your voice and with us sing,
Alleluia! Alleluia!

Thou burning sun with golden beam,
Thou silver moon with softer gleam,
O praise Him! O praise Him!
Alleluia! Alleluia! Alleluia!

Thou rushing wind that art so strong,
Ye clouds that sail in heaven along,
O praise Him! Alleluia!
Thou rising morn, in praise rejoice,
Ye lights of evening, find a voice!
O praise Him! O praise Him!
Alleluia! Alleluia! Alleluia!

Thou flowing water, pure and clear,
Make music for thy Lord to hear,
Alleluia! Alleluia!
Thou fire so masterful and bright,
That givest man both warmth and light,
O praise Him! O praise Him!
Alleluia! Alleluia! Alleluia!

Let all things their Creator bless,
And worship Him in humbleness,
O praise Him! Alleluia!
Praise, praise the Father, praise the Son,
And praise the Spirit, Three in One!
O praise Him! O praise Him!
Alleluia! Alleluia! Alleluia!

Sunday, October 11, 2009

The Myth of Genius

It was this somewhat misguided qoute on leftbrain/rightbrain that got me thinking;

"The severe autistics are in fact geniuses. Autism will eventually be seen as symptomatic of genius and not retardation."

Tuesday, October 06, 2009

The NAS and Autism Speaks UK respond to "I am autism"

Firstly this is what the NAS have to say:

"The NAS is aware of a campaign video called "I Am Autism", produced by the US charity Autism Speaks.

While we understand the huge pressure many families are under, we cannot support a campaign that is so negative in its portrayal of autism. We strongly believe that people with autism make a unique and valuable contribution to society.

Autism is a serious and lifelong condition. For many families and individuals affected by autism, we know that life can be extremely difficult, especially when they are not getting appropriate support. However, the right help at the right time can make an enormous difference. It is crucial that this support is available for all who need it."
And this is what Hilary Gilfoy the Chief Exec of Autism Speaks UK has to say:
“Autism Speaks in the UK is a quite separate and independent entity from Autism Speaks in the United States and took no part in the preparation of I am Autism, which reflects a view of autism which is very different – and alien - to the feelings of the majority of people in the UK including ourselves. As an organisation therefore we do not share, endorse or advocate the views expressed in it. Indeed we expressed our dislike of the poem by Billy Mann directly to him when he was in London last May.

The best way for autistic advocates to help secure change in such attitudes is by putting their views directly to Autism Speaks in the United States – as we have done. We know that they are aware of the strength of feeling that the video has aroused and have responded to this. We think it would be a great pity if this one short film were used to widen divides within the autism community, when we all share a powerful and common interest in ensuring a better future for all those affected by autism. It is for this reason that we have not put any general statement about the video on our website because we have no wish to draw further attention to it.”
Now whilst you will appreciate that I do have a connection with the NAS and it would be unwise for me at the current moment to comment further on the official statement, I do not have any connection with Autism Speaks whatever, however I did ask Hilary Gilfoy to make a statement on behalf of Autism Speaks UK distancing themselves from the video and she has obliged.

Ever since the demonstration outside Downing Street, which I took part in, against the failure to invite any autistic people to the "party" inside, I have heard rumours of what went on inside, which I am sure Dinah Murray, who was able to be on the inside would be able to substantiate, and that is that the Poem went down like the proverbial lead baloon.

Whatever we think of Autism Speaks UK, or the NAS for that matter I just wish to illustrate that even our "enemy" over here has a great deal more respect than Autism Speaks in the USA, and their kind of campaigning just does not go down well with anyone over here, even their friends. I hope that the USA learn that message as well, and that "I am Autism" is the last video of that genre that will ever be made.

I have not been able to make a video response myself, there are enough excellent ones out there already so here is an old one, it even features my favourite "whipping boy" professor "double barrel" himself being positive about autism.