Posts by Hilary Stace
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Joe - I'll think a bit more about this but two reactions.
First, take away the intellectual impairment aspect, and how would you prevent this happening to any vulnerable person? Ideas could include good life skills and budgeting education at school, supervised work placements while at school etc. Students with ID should be getting this at school too.
Secondly, to the ID. There are ways of supporting people in the community that probably haven't been utilised much here yet that don't rely on paid people or family members to be the only friends and carers. The Circle of Support idea that is being tried by some families, based on the Canadian Plan programme, creates a circle of friends and supporters around a person in a semi-formal process.
I have long proposed a model that creates a support circle of professionals and friends around a disabled person from diagnosis and eases the person (and parents) through all those transition points such as starting, changing or leaving school, and starting employment or independent living. Membership of the support group could change as the person's needs change, eg you might have a preschool educational support worker at the beginning and a person with employment support expertise when they are an adult.
Otherwise employment and life awareness is the sort of the thing that People First advocates with ID are well-aware of and teach other people in their training programmes. But these are only available in a few places at the moment.
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It all comes back to the social model of disability. People have a variety of impairments - intellectual, sensory, mental health, ASD, physical - but it is society (attitudes, structures, laws, even pay rates etc) that disables. A movement can unite against the disabling society even though within that community there is a huge variety of people and experiences.
It is a similar process to how people unite against racism and sexism or homophobia - you don't have to agree on everything, but by working together on what commonality there is, creates change that benefits everyone.
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Here is the preview in the Listener for Out of sight, out of mind when it screened just before Xmas 2004. Gerard Smyth showed it at one of those conferences I mentioned in my post above in 2005 (It was the Many Faces of Abuse Conference - which attracted some media controversy itself), and I'm sure he has copies available - it was a very moving documentary and the main subject has since died.
And here is a research report on the community participation of ex-Templeton residents.
Joe, the Donald Beasley Institute in Dunedin has just finished a large research project on the de-institutionalisation of Kimberley for which they interviewed staff, parents and residents. Fascinating stuff, and reports are available on their website
The Report of the Confidential forum of patients, families and staff of psychiatric and psychopaedic hospitals takes a sort of restorative approach to the subject of personal experience.
There was a radio programme on NZ and Eugenics in the Sunday morning Ideas slot about 4 or 5 years ago, but I can't find an on-line reference.
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I have been to about four conferences where keynote presentations have been given by people institutionalised as children for their severe disabilities, either intellectual or physical or both, and some are still non-verbal, and require extensive support. All fought to live in the community. Technology has now allowed those who do not speak to communicate through words.
It is always a humbling experience to be in the audience on such occasions and it teaches never to make assumptions.
Re eugenics in NZ this article dates from 1998 and some research I did at that time.
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Joe, apologies for offending you. As parents of people with ID we do our best, and I'm sure it's easier for each generation because of the efforts of those who went before. That's why I will keep fighting for parents, and for people with ID to be supported to make their own decisions about their own lives. I admire People First as a model of an organisation in which people with ID are involved at every level including governance.
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For those in Wellington who want to go along, Back Benchers starts again tonight (Wed 18). It's filmed live at 9 pm at the Backbencher pub in Molesworth Street (and shown on TV7). New Green MP Catherine Delahunty is on tonight.
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I believe that this country has largely treated the severely intellectually disabled in a humane fashion. Euthanasia was hardly ever the norm, and eugenics never gained a real foothold.
With respect, Joe, there is a great deal of evidence, including personal testimony, that people disliked being locked up in institutions, or denied their personhood and citizenship, for who they were, not what they had done. And eugenics underpinned public policy for most of the first half of the 20th century, and is still only just below the surface of much political and media commentary.
And re microcephaly, I know adults with this condition who not only walk and talk, but have been to school, play sport, have friends etc. This wikipedia article is interesting.
People First is a self-advocacy organisation for people with learning disabilities (their preferred term) and I'm sure it has members with microcephaly.
And re the in-utero testosterone level thing. Another study reported in New Scientist implicated high levels of uterine testosterone as a cause of successful financial trading in the resulting adult children!
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People have impairments, but society disables. That's why we need disability legislation, to address the disabling society. And some people prefer to call themselves disabled people because it affirms them as people oppressed by the disabling society.
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severely intellectually disabled people - e.g.microcephalics
(who are NEVER going to have any kind of human life/independent life) and the pointlessness of keeping people alive - just to keep them alive.There are two different issues here. The first is an example of assumptions made from our able-ist perspective. If there was a advocacy group of microcephalic people (they are people not a condition) they might disagree with you about your assumption about their human deficit.
The second I agree with. Why are we so afraid of death that we keep people alive who have previously expressed a wish not to be kept alive by technology if they ever became vegetative? (and we should all make sure we have made enduring power of attorney decisions about this should we be that vegetative person). This decision should be left to a group of people who know and love that person, and can come to a consensus about what they would have wanted, without political or religious interference.
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Hear hear Russell. And some aspies, aspergians, auties and autistics object to 'living with autism' as it is not their flatmate.
If in doubt ask about chosen identity and language. It's just like checking with someone to get the pronunciation or spelling of their name right.
Just don't say 'What's wrong with you?'