Anna wrote:
<< I am an honours student and my thesis is about the theoretical
barriers and possibilities of widening service approaches for people
with an intellectual disability. It discusses the contrast between
discourses of congitive impairment, the social model and social
exclusion models. >>
[snip]
<< I am particularly interested to discuss the nature of agency in the
social model (or critical theory) with consideration to the issues
that face people with cognitive impairment. The sociological concept
of 'agency' refers to the assumption that people are reflective and
capable of choice and action (Barnes, Mercer & Shakespeare, 1999).
This term is meshed with the notion of rationality, which is in simple
terms the ability to use reason. >>
[snip]
<< So critical theory and the social model upholds the importance of
reason, and therefore the subjugation of the body to the mind which
marks out people with a cognitive impairment in the first place. >>
I spent a long time trying to understand what Anna was saying. Now, I
*think* I've got most of it.
Agency = the ability to make choices, and control your life. What many
of us would call "self-determination".
Many people think those of us with cognitive disabilities can't be
self-determining-- that our disability itself prevents this. The major
barrier to our ability to make "good" choices is seen to be our
disability itself-- not the sort of societal barriers faced by people
with physical or sensory disabilities.
Have I understood that correctly? If so, I have some comments :)
1. People with cognitive disabilities *can* make choices. With
appropriate support, many of us can self-determine in most, or all,
areas of our lives. And even the most severely disabled amongst us can
indicate (say) likes and dislikes-- through facial expressions, for
example.
2. Many people with cognitive disabilities aren't *given the chance*
to self-determine-- except in very limited areas of our lives. People
make choices for us, decide what they think is best for us.
3. Some people with cognitive disabilities have *never learned* to
self-determine-- because they've never been in a situation where this
was encouraged. People living in institutions have very, very limited
choices available to them-- so people leave institutions ill-equipped
to make them. That doesn't mean they *can't* learn to make choices,
and be self-determining-- only that they haven't done so yet.
4. People with cognitive disabilities *do* encounter societal
barriers-- barriers that limit our ability to self-determine. Jargon
is a barrier. Complex language is a barrier. Lack of information is a
barrier. People's assumptions (the assumption that we can't make good
choices, for example)-- they're a barrier.
5. The important question: "What can be done to help people with
cognitive disabilities self-determine?" Not "why can't they?", but
"what will make it (more) possible?"
6. I recently heard a self-advocate say: "Everybody talks about ramps
to buildings. What about ramps to minds?" "Ramps to minds"-- I thought
it was a wonderful phrase. Plain English can be a "ramp". Audio tapes
can be a "ramp". Pictures and video can be "ramps".
7. Lastly, a story. Friends of mine used to support a self-advocacy
group within a large institution. When the institution was going to
close, Jacqui and Sue worked very, very hard to give all the residents
info about the closure. They also helped everyone choose where they
wanted to live. They used video, and lots of pictures. They asked
people how they felt about leaving-- happy or sad (they had pictures
of happy and sad faces for people to choose from). They told people
some of the other places they might be able to live-- a house, another
institution, or... (they didn't assume that people knew what choices
were available). They asked where (geographically) people wanted to
live-- near their family, with friends from the institution, or...
(again, they didn't assume people knew what choices were available).
The whole process took *months*-- but by the end of it, everyone
living in that institution knew what was happening. And everyone had
decided where they wanted to live. Of course-- people's choices were
often ignored :(:( Staff decided for people, or families did. In the
end, policy issues and numbers ruled (120 people were going to live in
a new institution, built on the site of the old one-- regardless of
their wants and needs...). Yes, many of the people living in that
institution had severe cognitive disabilities. Even so, they *were*
able to self-determine-- if/when others *let* them, and provided the
support (the "ramps to minds") they needed.
- Ria
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Ria Strong
Melbourne, Australia
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