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.


kristina said...

Keep getting the truth out.....

Kevathens said...

It can be done.

For me, it was by saying I wanted to be like most people [whom I define as happy and secure: those were my massively solid goals], then bouncing the idea of myself off of that majority, redefining virtually everything along the way. Essentially 're-animating' myself. I started the process with my psychologist but am still continuing this after months of not seeing him.

Yes, near-meltdowns along the way. Those are awesome!

Anyway, hope this helps, and I will continue to monitor your progress, Mr. Rex. >:| Aka I wish you well.

ballastexistenz said...

Kevathens, you're proposing an individual solution to a political problem.

Socrates said...

strew L., you could've told me you've already lived my life lately... esp reading the posts below this one...