Hard News by Russell Brown

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  • Sacha,

    And New Scientist is always beautiful to look at, which helps.

    Ak • Since May 2008 • 15711 posts Report Reply

  • Joe Wylie,

    Joe, have you seen "Out of Sight, Out of Mind"?

    Thanks Sacha, wonder how I might be able to track that down?

    I've known a few people who worked at Templeton as far back as WW2, and a few who were 'patients' there. A couple of them are still on deck. I'm more familiar with Levin, which was started just after WW2, largely with former Templeton staff and inmates.

    Attempting to build a case for a sinister historical eugenics-driven agenda in NZ doesn't quite stack with reality. Please remember, at a time when euthanasia in the name of eugenics was being carried out in Europe and Japan, the wartime NZ government was 'manpowering' people into caring for the intellectually disabled., often against their will. I've heard stories of more than one nervous breakdown suffered by people who were totally unsuited to such work, and by the disturbing sadistic tendencies of some staff.

    Fortunately this was NOT the prevailing culture. Surely it's a testimony to the inherent humanity of this country's policies that things worked out as well as they did. Interesting that you mention Plunket. While Truby King seems to have held some barkingly nonsensical views, I doubt that anyone would dispute that the organisation was a major force in improving child healthcare.

    My impression is that, while 'psychopaedic' institutions such as Templeton eventually grew too large and centralised to meet the needs of a changing society, up until the 1970s they were, by world standards, largely humane and progressive.

    While too much time has passed now, it would be great to have a better record of the stories of inmates - to the extent that this would be possible - along with staff and, perhaps as important as any, parents and caregivers who either surrendered or volunteered their charges to such places.

    I'm not interested in casting myself in the role of apologist for the methods of an era whose time is well past. Just saying, in the late 80s I visited a group of former patients I'd known from my younger days at Levin, adult males whose facility had been closed in order to place them in Salvation Army care. Without the community and freedom to move about that they'd once enjoyed their lives seemed sadly impoverished. It was largely a cynical cost-cutting measure carried out on the pretext of patients' rights.

    I don't believe that extreme concepts of racial purity and 'breeding out' congenital deficiencies were given any real credence here by the 1950s - the prevailing culture was far too pragmatic for such nonsense. There was an enormous emphasis on providing quality of life within the institutions of the immediate postwar decades. That's the essential difference between the way things were then, and the current emphasis on integration into the community. Rather than congratulate ourselves on our comparative enlightenment, we might do well to realise that we have a worthy history to learn from.

    flat earth • Since Jan 2007 • 3291 posts Report Reply

  • Hilary Stace,

    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.

    Wgtn • Since Jun 2008 • 1901 posts Report Reply

  • Joe Wylie,

    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.

    I'm sure you'd have found a lot in common with those who fought to improve the lot of people with intellectual impairments, such as the late Charles Guy, head attendant at Levin from its inception until his retirement in the 1960s. Your mention of the advantages brought by technology is very much reminiscent of his enthusing about the huge improvement in the quality of life enjoyed by hydrocephalics since the development of the cerebral shunt.

    Respect, Hilary - you're advancing an honourable tradition.

    flat earth • Since Jan 2007 • 3291 posts Report Reply

  • Rob Stowell,

    Joe, have you seen "Out of Sight, Out of Mind"?

    Thanks Sacha, wonder how I might be able to track that down?

    Try googling "frank film" in NZ.
    Gerard is Chch based, and would probably be happy to talk. The "Eugenics" doco screen about three years ago, I think. (Out of Sight has never been on NZ television, which is truely daft.)

    Whakaraupo • Since Nov 2006 • 1353 posts Report Reply

  • Sacha,

    Rob, Out of Sight was on telly a few years ago - because that's where I saw it - but I've never heard anything further about the eugenics project. Google is not much help in either case..

    Ak • Since May 2008 • 15711 posts Report Reply

  • Hilary Stace,

    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.

    Wgtn • Since Jun 2008 • 1901 posts Report Reply

  • Kerry Weston,

    I think it will be very interesting to read reports and personal accounts in about 30 years' time about people's experiences of community care. I wonder how many abuse cases will have piled up and investigations been done into the quality of care provided through private agencies?

    Some hard and guilt-laden decisions have to be made in families dealing with family members with serious mental health disorders. In my extended family, we have someone who lives alone, by choice, who is utterly unpredictable and spends a great deal of time walking the streets alone. I won't go into the details other than to say, a better way for the family to cope hasn't been found. Still, we may all come to regret the consequences.

    Manawatu • Since Jan 2008 • 494 posts Report Reply

  • Joe Wylie,

    Hilary, very much appreciate the links, especially the Donald Beasley Institute. While I've yet to read the reports in detail, I'd like to say that, while the transition and closure seems to have been handled admirably, through the 80s the institution was allowed to run down for politically expedient reasons. This is hinted at in the Beasley Report's mention of the "working life in an institution in its heyday and as it gradually closed". I don't believe that this was done in the best interests of the inmates.

    With hindsight, Kimberley should have been phased out earlier with the welfare of the inmates paramount, rather than first reducing it to a dismal shell of an institution. There's a book, the title of which I won't mention here, which purports to be a history of the place, but it's an abominably written travesty.

    Kerry, I'm glad that someone's mentioned psychiatric issues. I think this reinforces just how diverse the term disability is, and how overgeneralising can sometimes obscure issues. My interest is driven by my experience with intellectual disability, specifically those who measure as low IQ. This is completely different from, say, Russell's coalface involvement with Asbergers/autism, and the whole other world of psychiatric disabilities, not to mention the special concerns of the deaf.

    While the concept of a disability community might be useful in a given situation, many of these groups, if that's how they might choose to see themselves, have as little in common with one another as society at large does with the disabled in general. I've seen a young sufferer from birth trauma intellectual impairment recoil in horror from a group of Downs people that someone had suggested they might benefit from working with. At the time I could only sympathise.

    flat earth • Since Jan 2007 • 3291 posts Report Reply

  • Sacha,

    Disabled communit ies .

    Ak • Since May 2008 • 15711 posts Report Reply

  • Mark Harris,

    @Sacha
    I take your point about the plurality, but a) that's not how the political world views the diffabled* and b) united we stand and they see more of us than if we stand alone.

    What we need to recognise and get government to recognize is that a one size policy doesn't fit all and that we're all individual people (and citizens and voters and taxpayers, dammit) and need to be treated as such, instead of commodities.

    *not committed to this term yet, just taking it for a test run ;-)

    Waikanae • Since Jul 2008 • 1343 posts Report Reply

  • Sacha,

    It's complex. Disabled people are part of every other population group/community, and so I take Joe's point about differences.

    Can I suggest that it is not only about the traditional groups defined by impairment types though - although that's the level a lot of policy still responds to and it reflects our medicalised silos (which assume that all people with similar impairments are more common than different).

    A young urban female Korean disabled student is likely to have a rather different set of experiences than an older rural male Maori disabled farmer, even if they both share the same type of impairment. At the same time, alongside their differences they also have things in common, including being disabled and living in this country.

    Ak • Since May 2008 • 15711 posts Report Reply

  • Joe Wylie,

    medicalised silos

    heh!

    flat earth • Since Jan 2007 • 3291 posts Report Reply

  • Hilary Stace,

    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.

    Wgtn • Since Jun 2008 • 1901 posts Report Reply

  • Sacha,

    Hilary, no time now but I'll be talking soon about approaches that go beyond identity politics and human rights. Thanks for that eugenics reference.

    Ak • Since May 2008 • 15711 posts Report Reply

  • Joe Wylie,

    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 practical case: a young person leaves school and starts work in an IHC facility. Their earnings are supplemented by a disability benefit. Naturally they're delighted to be part of the larger world and have their own money to spend as they please. Unfortunately they're soon ripped off by an unscrupulous retailer, and make a ridiculously large donation to a predatory religious group, something they immediately regret. As they're a minor, their caregiver is able to place a limit on how much they're able to withdraw from their account.

    At their workplace, a social worker enquires whether they have any issues they'd like to discuss. They complain that they're not allowed free access to their earnings. The social worker visits the caregiver and delivers a sermon on the rights of the disabled. Over time the young person develops an ability to handle their own money that exceeds their caregivers hopes, but until then the social worker's admonitions are ignored, and the young person's access to their own money remains restricted.

    That story had a happy outcome, but I know of a recent case of someone with an intellectual disability who left home in their mid-30s, and quickly fell victim to loan sharks. No-one's rights were violated in resolving the problem, but there was a considerable cost to family members. In a better world, Hilary, how might such issues be avoided?

    flat earth • Since Jan 2007 • 3291 posts Report Reply

  • Hilary Stace,

    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.

    Wgtn • Since Jun 2008 • 1901 posts Report Reply

  • Joe Wylie,

    First, take away the intellectual impairment aspect, and how would you prevent this happening to any vulnerable person?

    Not sure what you mean by 'any vulnerable person'. Perhaps anyone who's taken advantage of in daily life could be seen as intellectually impaired?

    As it happened, the young person I've given as an example did attend a one-week course which involved such skills as deciphering supermarket ads. And they bought a sweatshirt especially for the occasion, with their own money, with 'University of Paris, Sorbonne' proudly emblazoned across the front. I'm sure the course helped.

    As a way of addressing the vulnerability of people with particular needs without violating or curtailing their rights , the Circle of Support concept sounds great. I only wish that such things had been more developed back in the day.

    Regarding the division between 'society' and the disabled, there are times when being a caregiver for a dependent person with a disability can seem like a disability in itself.

    flat earth • Since Jan 2007 • 3291 posts Report Reply

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