Dear Rhoda,
thanks for your reply and taking further some of the
points. I have become aware of an'autistic'community on the
web and am interested in this. In some ways people
accessing and using such resources remind me of the issues
which used to get raised about the development of
self-advocacy for people described as having learning
disabilities. It was clear that there was/is a wedge or a
difference between those who could (and managed to get the
support) and those who were not self-advocates( because of
the limitation imposed on them by their overpowering care
regimes). My concern is very much that in the research I
have been involved in there is a significant divergence
between those developing and involved in the autistic
culture and those who are surrounded by a fortress of care
which seems designed to placate and meet the needs of
parents and others.
I agree about the social interpretations and (I did not
make this clear earlier) believe the wider (neuro-typical)
community can learn to be less intolerant if not wholly
inclusive.
I believe there are some major issues of rights developing
which our care systems (as they have developed in the last
decade) are succesfully hiding. Our research is into
understanding what care is described to be and how it meets
person-centred needs, quality of life etc. Because of the
funding structure we are restricted to how much we can
effectively say about what we find. Having said that, the
group of us who are involved are clear there are some real
problems in service provision and the dominance of
technologies for cure, magic bullets, and all the other
diversions from the real job of supporting people get a
real slice of decent life.
At the risk of an overlong reply I remember recently being
brought up smart by a parent (and subsequently by someone
with Aspergers Syndrome) when I described autism as part of
the disability movement. Having mostly experienced work in
learning disability I had perceived the struggle to be
similar and I saw autism within that framework. I have to
accept my mistake and the challenge to my understanding.
I am still learning so would welcome support and teaching
which guides me to a more effective appreciation of how I
describe the collective struggle to overcome the social
(and medical) oppression of people with autism/non
neuro-typical people.
On Mon, 03 Jul 2000 17:08:56 -0700 Rhoda Castle
<[log in to unmask]> wrote:
> Dear Jim
> I was really pleased to hear that someone on this list has an interest in
> autism. I belong to a list for university students with autism and their
> parents, and although there are obvious overlaps there doesn't seem to be
> much actual contact between these groups and the disability movement more
> generally. With reference to your point about people with autism being
> disenfranchised, I think there is a growing assertiveness now with phrases
> like 'autistic culture' and 'this is autistic space' mentioned. Also, the
> limitations of 'NTs' (neuro-typicals) is a frequent topic of conversation.
> However, this may well not have 'trickled down' to the people who are more
> likely to be recipients - and providers - of social care services. Also, it
> seems that many professionals emphasise the 'intrapersonal factors' you
> mention - which in my opinion cannot be treated as no more than 'social
> constructions' - to the extent that the behaviour of others is not
> problematised as much as it needs to be. Also, autism seems to attract more
> than its fair share of miracal 'cures' and treatments, which seem to be
> imposed on people irrespective of their wishes. I think a line needs to be
> drawn between 'making adjustments' or making social environments more
> inclusive, based on what is understood about this dimension of human
> variation, and attempts to 'normalise' autistic people.
>
> There does seem to be some self-organisation, paricularly in the US, and
> this might be relevant to your project. I think Andrew's question about
> points of convergence/contention between disabled people and
> parent-activists is very relevant in autism services, although I don't
> think it entirely mirrors issues for disability generally. I'd be
> interested in hearing about your research.
>
> Rhoda Castle
>
> At 10:35 03/07/00 +0100, you wrote:
> >Dear Andrew,
> >I am sorry I cannot provide what you wish for but I would
> >like to be kept in touch with any info you get. My
> >involvement is with a project for types of care within EU
> >for people with autism. I have a real concern about the
> >issue sfor people with autism about how they are or are not
> >involved (disenfranchised) from effective particiaption in
> >their services. Clearly there are intra-personal factors
> >which could be perceived to have a bearing on this but I do
> >not believe there is no way to make significant change to
> >this over time. People will need support and acces to a
> >larger voice - hence my interest in the results of your
> >query.
> >The only information I have gleaned about disability in
> >europe is from Munday and Ely 'Social Care in Europe'which
> >provides an overview of the formal structures.
> >Jim Wood
> >
> >On Sun, 25 Jun 2000 12:26:06 +0200
> >Andrew Azzopardi <[log in to unmask]> wrote:
> >
> >> Dear list members,
> >>
> >> Thanks for bothering to read this mail. I am currently reading a
> Masters at the University of Sheffield. I would like to ask list members
> whether they can guide me to;
> >> 1. a site or a book that gives a detailed outline of the development of
> disability politics in Europe;
> >> 2. how could one define 'disability movement';
> >> 3. what are the points of contention and those of convergence between
> disabled people activists and parents (of disabled people) activists.
> >>
> >> Thanks,
> >>
> >> Andrew Azzopardi
> >
> >----------------------
> >Jim Wood
> >University of Exeter
> >
> >
> >
> R. Castle
> <[log in to unmask]>
----------------------
Jim Wood
University of Exeter
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