Sunday, May 09, 2010

A true story and a little lesson about functioning level.

Picture a women, who is so physically impaired that she cannot even get out of bed or sit up in it without assistance.
She cannot get dressed without assistance or use the toilet. When she does her number 2's somebody has to wipe her bottom for her.
She cannot cut up her food, and sometimes can't even even lift it off her plate to her mouth.
Her hands don't look like hands ought to any more, they are twisted and distorted, she can't even type, but has to use a machine that chooses the letters one at a time and painfully labours them into words and sentences.
Indeed she needs attention 24 hours of the day.

What kind of functioning level do you call that?

You, don't of course. Functioning levels are a discourse of intellectual impairments not physical ones, created out of older distinctions, wrapped up in Greek words to look respectable, words like "imbecile" "moron" "idiot" -- "low grades" and "high grades" the categories of the institutions used to sort out who could do useful work in the laundry and who could not.

The categories are not ones we use now, far too "politically incorrect"  even when rationalised by a later generation (in the UK at least) to educationally sub normal, mild and severe - or what they are in autism, remind me again lest I have forgotten "low and high functioning". Do those labels bear up in the real world?

The person I started this post with did not die in an institution though. When she died the civic business of a City stopped, as Council chiefs, Hospital administrators, MP's, Trade Unionists and Disability advocates paid their respects at her funeral.

And did they turn out purely for pity, because a once functional body had been brought so low? No they did not, they turned out to pay tribute to an individual whose legacy is all around, in the form of ramps and electric doors, a women's health centre, buses and taxis you can take a wheelchair onto. Her epitaph on her tombstone "A champion who fought for others"

That woman, through pain and fatigue, immobility and constraint, was a tireless worker, for civil rights, for access and a host of other things beyond the world of disability.

She left another legacy though. A strange son, who she came to be dependent upon to do all those physical tasks for her. A son who could be an embarrassment though. An individual given to bizarre fits of rage, where he could punch through a solid door, break the furniture, even smash his computer screen.  How do you explain all that yelling to the neighbours? A carer, who could not keep quiet in meetings, who had embarrassing outbursts at public functions. An individual whose own brother would not accompany him to the shops in fear of the consequences as he loudly berated the shop for this or that. As the computer era dawned she bought him laptops, very expensive and rare at the time, portable tape recorders to aid his difficulty with the written word.

What was his functioning level in the community? Clearly in the orthodox social domain, very low, a liability, but when she died, he went back into further and on to higher education where he is pursuing his doctorate now. Intellectually very high functioning, yet still an embarrassment at public meetings.

It becomes not a matter of how you define function, or even if you define function, but why?

The mother could have been described as physically very low functioning, in terms of self care; low functioning, but in the civic and social spheres she was very high functioning indeed. When she was interviewed for a position of considerable responsibility, one of the interviewers said to her face, that he had not expected the candidate to be so obviously disabled as she was, sitting in that room in her electric wheelchair with the impedimenta of wrist and neck brace, and shapeless fingers. He said had he seen her first, he would not have believed her capable of all the things she had done on her CV.

The son? Well he became one of those "shiny aspies" didn't he? But then he nearly did not get that far. When his mother died, his structured and goal oriented life fell apart, he nearly took his own life because the strains of trying to direct it for himself were overwhelming. What physically he did for his mother, became hard intellectually for him to do for himself without that world of constant prompts and timetables. He still struggles with it.  This Sunday morning he sits and types away, he isn't dressed, he hasn't shaved or showered, and he certainly has not had, nor will have breakfast, he is running out of food and will need at least to get some clothes on and get down to the shops while they are still open to get something he can put in the microwave. But still he types ..........

It's not about functioning is it. It is about appearance, prejudice, jumping to conclusions. A functioning label that is built around whether someone is verbal, or non verbal, has a low IQ or is gifted, doesn't tell you a lot about the person at all. It tells you only about what someone else considers as important.

For the shiny aspie, it's not important to him right now that he eats, or gets dressed, he has something else on his mind.

My last post was about Amanda Baggs. There are some people who will have fallen out with me for even raising her name in the same sentence as "controversy". People who I have worked closely with even.

Well I've not entirely finished yet. The story I have posted is a true one, and it doesn't take too much guesswork for those in the know, to know who I am referring to.

During a time some people will have forgotten, there was the usual flurry of negativity coming from "Autism Speaks" there was an appalling video "autism every day" and not the only one, which focused on only one side of the picture of autism, much as one could focus if one wanted to only on one side of the life of the disabled woman I have instanced in my true story. You could focus on her pain, her frustration, her inability. But that was not the whole truth was it?

There was another piece doing the rounds, purporting to describe from the inside the life of a "low functioning" autistic boy. That wasn't truth, it was written by a so called "high functioning" motivational speaker, not even of the same gender. It was written for a reason, as a piece of propaganda I am sure.

Well somebody constructed a clever response to all that negativity. A serious of photographs, purporting to show one pitiable reality. Then the photographs were shown again with a different set of captions, showing another. That site was initially anonymous, The photographs did not even look like the photographs of a well known person who had a web site previously. You had to think about it to even suspect who it was.

Well it was Amanda Baggs, and the site was called "Getting the Truth Out". eventually the authorship of the site became common knowledge.

There was a danger though in that presentation, that the first set of pictures was as deep as anyone would go. Stark Black and White photographs, a parody of much classic charity poster advertising of the kind covered in David Hevey's seminal photo essay "creatures that time forgot"  People might believe that the object of the photo series was to invoke pity, the opposite of the intention. Well indeed that is all that some people did see, they constructed there own realities around that, and then there were the follow up videos when the authors identity was known. I foresaw that, and the gloss put on it all by CNN, it was out of control.

I made a video too, "whichever way you look at it, it's still autism" It also used pictures in an ironic way, it was all carefully crafted initially as a response to a "cure autism now" video, deconstructing the forced negativity of it, and concluding with the notion that different people see different things when they are talking about autism, they colour it with their own perspective no matter what. The parent sees the child differently to the child themself, and that is because they are both on different journey's at different ends of life, whether autism and disability is in the frame or not.

There will be no more comments on my last blog post. My answer to them all is here.

Stop trying to pigeon-hole people into functional categories - see the individual - realise their perspective on things is not necessarily yours.  Change is what life is about. coping with change is what can make it difficult. The mother I started out with was not always as physically incapable, her body regressed. The son was not always as "shiny" he progressed.

Motivations are what come from within, sometimes the author does not know what they are, but this much, you can be sure that if the author does not, no-one else does either.

6 comments:

mike stanton said...

This is an important post and deserves to be widely read. Thank you, Larry, for sharing this story of a remarkable woman and her equally remarkable son.

The author said...

Kent, in line with my new policy I am not letting your recent posts through, you do not get what this blog is about. It is a different reality of disability, that was not a particularly cosy one for my mum. For people who think I do not know about caring, consider what it takes to do that year on year, for as long as most people will spend on bringing up a child. Social services where mostly no more in the picture than they are not.

Our life was never an easy one, but I would not change it, because that is fantasy to change the things you cannot. What we concentrated on was changing the things we could.

The point is that functioning level, disability, and severity are not interchangeable terms, they exist each in a variety of contexts. We all have our separate realities and have to live them.

The issue over Amanda, is finito, no more proxy wars! No more invoking other peoples realities, (via youtube links) to support your own agenda.

There are autistic people, with a variety of needs and cognitive abilities, nobody is arguing otherwise so what's the point of prolonging a vendetta. People are free to believe what they will and to do the investigating for themselves.

Life is lived 24 hrs. but documentaries are constructed of selective editing, and it doesn't get more selective than when you only have ten minutes to cram it into on youtube.

And do you think I am really unfamiliar with adults who wear diapers? how do you think my mum managed during long meetings, and who had to change them?

hollywoodjaded said...

I agree with Mike...and what a lovely tribute to such a remarkable woman on this day. What you say about the functioning levels and _their origins_ is so important; it needs to be known. It needs to be ended. I know of students who have been tagged or attempted to be tagged with changes in functioning levels for things like losing access to their communication devices and for reporting abuse. As Mike said, thank you for sharing this story. Thank you for your steadfastness in all this thru all these many years. Thank you for your heart.

shiva said...

Great post, but the Getting the Truth Out link appears to be down.

It is/was a great piece of art-as-advocacy but the trouble with it is, as you say, that you have to keep going through it. When i first came across it, i sent the link to several friends, more than one of whom only got as far as the first few images, were disgusted/offended (as should have been!), then asked me why i'd sent them this charity model shit, and i had to explain that that was just the intro and you had to keep going through the site to get to the point.

Do you know you posted this on the American Mother's Day?

Phil Schwarz said...

What Mike Stanton and HJ said.
Thank you for posting this, Larry, and may the post's protagonist's memory be a blessing.

The author said...

"Do you know you posted this on the American Mother's Day? "

Yes I was aware of the significance of the date