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 :)


Clay said...

Love the photos, the juxtapositioning of them is brilliant. I celebrated my own 10 year anniversary this past July, and in some ways, we've taken the journey of self-discovery together, and been influenced by the same persons and events. I applaud all that you've been able to accomplish, and appreciate that you acknowledge that there were others on your team. We, all of us, need to continue to work together to defeat the medical model and all that comes from it.

Nice that our blogs are listed next to each other today!

The author said...

Photographs are full of fakery of course, it is certainly not the same water.

The first photograph was taken on Lake Windermere when I was about 7 or 8 and my hair was still fair. The second is from this Summer on Lake Vyrnwy which I have been visiting on and off since the the late 70's and now my hair has turned grey.

I should have posted a responce to your Simon and Garfunkel piece, that was a favourite of mine too, but it all goes back to John Donne "No man is an Island" because whether we acknowlege it or not we are all part of some vast interconnected web. Everything is interconnected, and it is my hope that the kind of culture shock that Autism Speaks has met on our side of the Atlantic, will rebound on your side.

Back in 99 there were not so many of us on the internet, but I am glad to have travelled with those who I found as my inspiration.

mike stanton said...


your contribution within the NAS has been immense and overwhelmingly positive. Long may you continue.