I hope it will not be thought discourteous if I reply to
several replies in one go through you, Laurence. It is good
to hear about the likely similarites and differences among
the people contributing to the issues in autism and in self
advocacy. I liked the point about helplessness as that is
something I began to learn about when I first entered an
adult 'subnormality' hospital as it was called in 1981.
Helplessness was seen as linked to outer directed locus of
control and aspects of depression and although the theories
have been refined and the relationships clarifed the issue
remains. More recent writing has emphasisied 'taught'
helplessness - I cannot remember the source so would
welcome identification of this. I think that understanding
it as 'taught' emphasises the power relationship in service
settings. The example given by you Laurence, highlights how
different it could if staff are given different targets to
work for by their managers and social beliefs about the
myriad of variations in human existence. We do not learn
well from the long march of history as other items about
medical choices and CAN show.
I too shudder at things like CAN especially in the context
of genome projects which risk being misused. What are we
teaching - what are our peers learning.
Jim
On Fri, 7 Jul 2000 21:59:01 +1000 Laurence Bathurst
<[log in to unmask]> wrote:
> Ria wrote
>
> > I'd like to involve less-empowered people with disabilities in
> > self-advocacy-- people still living in institutions, people in
> > community residential units, people in adult training and support
> > services, people in sheltered workshops, people at home with
> > over-protective parents. Other self-advocates would like this too.
> > We've talked about it amongst ourselves.
> >
> > It's so hard, tho, to reach some people. The services they use often
> > don't want us to spend time with them. And even when we do-- some
> > people have been so disempowered for so long, it's hard for them to
> > see that things could be different. They can have choices, and
> > *should* have choices. That they can and should be able to speak up.
> > It sometimes takes a long time for people to realise that.
>
> This brings back memories of my first employment experience as a recreation
> worker for people with intellectual disabilities who were living in an
> institution. I recall how difficult or impossible it was for many of the
> residents of that institution to be able to express their choice. I would
> ask the huge group of 50 or so people just sitting in the recreation room
> wating for the dinner bell to go, "who would like to go swimming?" I would
> watch as the people who were keen would become agitated but would not say
> yes or stand up. Their eyes would dart around the room looking for the cues
> of approval. I would ask out loud again "who would like to come swimming?"
> and there would be more silence and the same people "chomping at the bit".
> I would then ask individually "Sally would you like to go swimming?"...."Oh
> Yes Please!".."what about you John" and John would go to the door eager.
> "What about you Lynn?" and Lynn would burst into tears and scream holding
> her stomach as if in tremendous pain and lash out at the person next to her.
> "A simple yes or no will do Lynn - do you want to go swimming?"
> ..."NO!!!!!!!" she would shout. I would then praise Lynn for saying "no"
> and go off with the others.
>
> Five and a half years later, many of the residents of that place felt
> comfortable enough to say no without having to feign illness, throw a
> tantrum or completely ignore me. The majority however remained compliant to
> earlier teachings - no choices. There are people still in this place who do
> not talk...not 'cannot' talk...DO not talk. I understand that...why bother?
>
> The ability to be able to even conceive that you have the right to speak on
> behalf of yourself is a challenge to many people. It works against the many
> many years of teaching the exact opposite. I think many of the people Ria
> mentioned are demonstrating this same thing. Convincing people that they
> *can* make choices is the first hurdle.
>
>
> Laurence Bathurst
> University of Sydney
> School of Occupation and Leisure Sciences
> PO Box 170
> Lidcombe NSW 1825
>
> Ph: 61 2 9351 9509
> Fax: 61 2 9351 9166
> Home Ph: 61 2 9818 2050
>
----------------------
Jim Wood
University of Exeter
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