Hi there. You may be interested to know that there is a new
philosopy/trend in the U.S. for people with intellectual disabilites that
is called "self-determination". Alot of the work is being funded by the
Robert Wood Johsnon Foundation, a major philanthropic organization which
generally focuses on health care and long term care issues here in the
To find out more, you can go to the following website:
Ria Strong wrote:
> 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. >>
> << 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. >>
> << 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
> 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
> Ria Strong
> Melbourne, Australia
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