Posts by Hilary Stace
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My father's cousin (Dr Rogers - former MP) had the safe house in Hamilton. He had to do a lot of bandaging and his wife a lot of comforting.
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Hard News: An open thread while I'm down…, in reply to Leopold,
That motorway one was quite fun. Just near where we lived. Trevor Richards updating the crowd via a loud hailer as he was listening on a transistor radio to events elsewhere (was that the Hamilton game?). Wonder what the protest technology of 2041 will be?
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Hard News: An open thread while I'm down…, in reply to Kate Hannah,
In 1981 there were several of us young mothers who took our babies on the marches in those striped buggies. But things got nasty at Molesworth Street and we didn't take them after that as it was too dangerous (that night we escaped and went home to watch the royal wedding, but I remember the shock of seeing women's bloodied faces under the streetlights). After that the fathers and friends regularly padded up with newspapers and bike helmets and it was quite an anxious wait until they came home again. Last Friday night there was a '81 Molesworth Street tour reunion. My daughter went along to hear first hand what she had participated in. And the current Sth African ambassador talked about what it had meant for them.
But what struck me most about it all was how young the anti-tour protesters had been then, and how brave, staunch and how organised they were (and without cellphones or computers).
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Hard News: An open thread while I'm down…, in reply to Joe Wylie,
Some of the saddest stories I've read are by those who were severely physically disabled and also non-verbal. Very vulnerable and a universal assumption that they were also intellectually impaired. I've been to two conference presentations by such people relating their experience of institutionalisation. Very powerful.
On the other hand I have a young and prolific Facebook and Twitter friend who has a similar very high level of impairment and also does not use spoken words. Yet he lives with his mother, goes to school, plays music, has the freedom of the neighbourhood (as much as you can in a power chair with very limited personal mobility), and has an active social media life. So better is possible.
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In the mid-60s you could have wandered in and had a look for yourself, it was pretty open.
But could the residents have readily left? From the account of the family member in the Spectrum Care book trying to get her older brother out in the 1980s was not possible.She talks about being only allowed to take him out for a short time and the distress of both of them when she had to take him back.
Anne McDonald (who wrote her story in "Annie's coming out") was in a similar institution in Melbourne, St Nicholas's, in the 60s and 70s had to have a long court case to be able to leave.
I have a friend who only recently found out he had a sibling who lived and died in Kimberley, and is angry and sad about it. I know it was a different era but surely we can keep trying to do better to our fellow humans.
We still have remnants of such thinking in policy that only lets disabled adults who are in supported living, home for a few days a year. The provider needs them on site to get payment from the MoH. So harmless aging disabled people have to ration their trips home to see elderly parents or to attend family events.
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Thanks, Joe, for that perspective.Kimberley is now a huge abandoned site about a kilometre long just past the State Highway One turnoff to Shannon. I'm not sure what era you are talking about but the growth era of our 'mental deficiency colonies' came after the 1953 Aitken report which recommended their expansion and extension, in spite of that being outdated best practice from the WHO, and against the wishes of parent groups (who wanted more community-based support). The role of psychopedic nurse was an NZ invention. Have you read the deinstitutionalisation study by the Donald Beasley Institute. Different perspectives all fascinating: staff, patients and families.
My interest is mainly in the stories of the residents of such institutions and the families who sometimes found lost family members as they started to close. Spectrum Care's 2010 book "Extraordinary journeys' has the story of one adult who was in Kimberley unkonwn to his large family for many years. When they located him it took them several more years to be allowed to take him home with them. When he finally reconnected with his whanau they put on a big powhiri to welcome him back.
Institutionalisation of disabled people was all done in the name of policy and with the best of intentions.
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Andin, please don't stop making deep philosophical points on my behalf. Sometimes it's hard to get the nuances of arguments when we only have digital words to go by, and not the whole person.
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Hard News: An open thread while I'm down…, in reply to Sacha,
Careful Sacha. There was a ghetto of disabled people at Levin for many decades - up to 800 at its height in the early 1970s from small children upwards. It was called the Kimberley Hospital later Centre and it took until 2006 to close it. I drive past it often and think of those who had no identity or choice in their lives to the extent they had no clothes of their own and were called after the name of their dormitory. Attitude had some good coverage of it when doing a documentary on Robert Martin a couple of years ago. The camera panned around the empty buildings while Robert described what life was like there.
(But, on the other hand, it was probably cheaper to keep disabled people ghetto-ised.) -
Ross, thanks for telling me that the Guideline get a mention in the WHO disability report. I had a quick read of that the other day but it was a such a big file I only printed off the summary to read later. I noted that they had included NZ information so good the Guideline gets a mention. I (and possibly others) have mentioned it in conference presentations here and in Australia, and my major publishing achievement was getting a letter on the topic in the New Scientist last year. The compilation was a very good and worthwhile exercise to do - but it is only part of the picture. Really needs to be implemented, which isn't really happening. There is a Living Guideline Group which has updated the evidence on about three small areas and is currently looking at autism and employment (and not finding much of that randomised control trial evidence because it just hasn't been done). The earlier LGG reports are at www.nzgg.org.nz if you are interested. Otherwise my Guideline serves as a handy rest for my computer mouse.
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Hard News: An open thread while I'm down…, in reply to Ross Mason,
The NZ ASD Guideline contains over 300 recommendations graded according to international guideline methodology.So yes as evidence-based as you can get which is not really that helpful as there is no real research evidence base yet for many of the services and supports required. Many just graded as good practice by the various teams who worked on them (included paediatricians, psychologists, parents, teachers etc). But already probably a bit out of date considering they were published in April 2008 and bulk of research dates from mid 2000s.
And the main problem is implementation which is a totally different area. Great to have best practice guidelines, but turning them into real services and support for real people and families is another thing altogether and we have only gone a tiny bit along that path.
Need to know anymore (my recently submitted thesis had a bit of a focus on the ASD Guideline)? You can download the Guideline from the MoH website (big file) or ask for a free hard copy via their site.