Hard News: Total Attitude
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Anyway, are we ready to be entertained, even motivated, by an intellectually disabled comedian? Should we?
Of course we are. (IMO) People is people and when any person can gift, motivate, entertain another, that is just fine in my book.A few years ago, I helped on some educational piece about learning to walk again up at Ak Hospital (which I found beneficial to me, and, it passed boring Hospital sleep time)At times it was downright funny and that is always good. Nothing like laughter. We should all try it a little more often. :)
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The most inspiring aspect of the conference I was at in Melbourne last week (ASSID) was the self-advocacy stream. Here are people with ID telling their own stories of institutionalisation and doing their own research on today's residential care. A group of People First self-advocates from Christchurch did a great presentation on self-advocacy rights including employment, independent living. People First - a group for people with ID - now has its own Ministry of Health Disability Information and Advisory Service. So as the word spreads...
Joe Wylie - have you tested this theory on people with lived experience of being locked up in institutions? There are many around who can tell you what it was like including NZer Robert Martin who spoke to the UN as the head of global self-advocacy NGO Inclusion International during the work on the convention.
And as for humour - of course. I once saw the results of a workshop Philip Patston took with teenagers with intellectual and other impairments
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Joe-
The school thing is for another day - but where said student was concerned we got "Oh you mean blind people like to go far walks too ?"
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Joe Wylie - have you tested this theory on people with lived experience of being locked up in institutions? There are many around who can tell you what it was like including NZer Robert Martin who spoke to the UN as the head of global self-advocacy NGO Inclusion International during the work on the convention.
Hilary - I'm not theorising - carrying out social experiments on the intellectually disabled is something I'd find reprehensible. All I'm doing is drawing on my own experiences of what I've been privileged to witness and experience. To be "locked up" in an institution sounds pretty unpleasant, and I've no doubt it was.
It's misleading to imply, though, that all former institutions for the intellectually disabled were places of incarceration. Levin's Kimberley Centre, for example, provided a real sense of community which, for people with certain needs, nothing seems to have adequately replaced. My concern is that people who might have once found a pleasant home in such a place, or just an opportunity to prepare for life in the wider community, have been effectively reclassified as criminals.
Sofie - thanks for that. One of the wittiest people I've known is classed as having an intellectual disability. There's often that grey area, though, of whether you're laughing at or with. Whatever, it's an aspect of life that's full of surprises.
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My concern is that people who might have once found a pleasant home in such a place, or just an opportunity to prepare for life in the wider community, have been effectively reclassified as criminals.
And tragically, some people are quite okay with that. I heard tell of a meeting in which Rodney Hide declared that Act's corrections policy would fix the problem of support for the mentally ill by keeping them in jail.
I'm the parent of two ASD boys, and well aware of the over-representation of people on the autism spectrum in prisons in most countries. The idea of that as a solution gives me the shivers.
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I'm the parent of two ASD boys, and well aware of the over-representation of people on the autism spectrum in prisons in most countries. The idea of that as a solution gives me the shivers.
After Martin Bryant went on his shooting spree in Tasmania, rumours circulated that he was diagnosed with Aspergers. In truth, he was assessed as legally retarded, but from what I remember the lies travelled halfway round the globe before the truth could punch in its username and password.
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After Martin Bryant went on his shooting spree in Tasmania, rumours circulated that he was diagnosed with Aspergers. In truth, he was assessed as legally retarded, but from what I remember the lies travelled halfway round the globe before the truth could punch in its username and password.
He was actually assessed as Asperger in the official psychiatric report. In a report for the defence, another psychiatrist agreed there was some evidence for Asperger Syndrome, but also important evidence to the contrary.
A further complication is that AS had only just entered the diagnostic manual at that time, and clinicians seemed to be sticking very closely to the letter of that, while I think now the thinking is more flexible.
Bryant may well have been AS -- his failed, clumsy attempts at social engagement seem to have stoked his anger -- but he clearly had many, many other problems, including low IQ.
I recall it because we'd just had the AS diagnosis for our older boy at the time, and the impression via the media was very much AS = mass-murderer. It doesn't, plainly, but thank goodness I was able to determine that for myself with this new thing called the internet. I wrote about that here.
There was a fairly calm discussion on the autism web about the news of the childhood AS diagnosis of the VTech mas-murderer Cho Sueng-Hui. I wasn't the only one who had thought about it before that news came out. But if he was AS, like Bryant, he also had a hell of a lot of other problems. One expert declared that he had a "perfect storm" of personality disorders.
With both men, you have to wonder if they had received better childhood intervention tragedy might have been averted. Bryant's parents and doctors don't seem to have had any idea what they were dealing with (he was medicated for hyperactivity, among other things), and Cho's family just went into denial about it.
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you have to wonder if they had received better childhood intervention tragedy might have been averted
I suspect you could say the same about most criminals.
It argues that one of the most complex and difficult things we humans do is raise other humans from childhood. Because there are such huge differences between each individual it becomes and enormously difficult task. So difficult that we (society) get it wrong a lot.
I think we are getting better at it though.
cheers
Bart -
Re Kimberley. The Donald Beasley Institute in Dunedin was contracted to do some research on the effect of the closure. While their research on the attitudes of staff who worked at Kimberley might support Joe's theory, some other aspects of their research strongly refute this.
There was also a really interesting govt-led restorative justice approach whereby people who had been in institutions before 1992 could tell their story in confidence. The report (2007) can be found on the www.dia.govt.nz website - called Te Aiotanga: Report of the confidential forum of former in patients of psychiatric hospitals (or something similar).
I think that those with lived experience of the experience have the most valued expertise on issues affecting their own lives. Parents, carers, staff have different expertises.
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Curtis at Attitude tipped me off that this thread was hotting up - great to see. Thanks Russell for posting the clip and Hilary for the kind words. Bless.
I always feel slightly torn when considering contributing to these kinds of discussions around impairment and disability, mainly because the language used is so inconsistent and, in many cases, either confusing or just semantically inaccurate.
Disability, disabilities, disablement, different ability, physically/ intellectually challenged, mentally retarded etc...all are words used in such an ad hoc manner that they become meaningless in my mind. Sometimes they are used to define and categorise individuals; at other times to describe social processes; then again to paint a picture of behaviour. The only thing they have in common is that they serve to draw a comparison between what we interpret as a "normal" experience of being in this reality we call life, the world, society (look, more ad hoc, confused semantic redundancy).
Russell alluded to my talking about human diversity in place of disability on Wednesday night. That's part of it but I'm actually more interested in diversity of experience and how we describe and value it. For instance, look at our quest for "normality" and the high value we place on our children "being normal". What if we reframed "being normal" as "having a common experience" and revalued it as somewhat dull and boring? How tedious to experience life as a human being with the same physical, cognitive, emotional, social etc capacity as most other people. How would that change in value impact on us as human beings, individually and collectively? How would it change the world? If common experience became passe, old hat, would we all start hankering after a "unique experience" of life? Unique means "different in a way worthy of note", and having a unique experience is a much less emotive, constructive and interesting way of being different than being disabled (or having a disability for that matter). Who cares about medical diagnoses to explain why and how you are different from everyone else, when you are fascinated with being as different as possible from everyone else?
Alas, I forget how scared most people are of being different, let alone in a way worthy of note, and how important it is to fit in. Not to mention how our popular culture teaches us to catastrophise and demonise anything out of the ordinary. Personally, I blame soap operas and reality TV. I think people spend a lot of time trying to add drama to their lives to make them as interesting as Shortland St, Neighbours, Days of our Lives and Coronation St. Disability in it's current frame is all one needs for a lifetime of cliffhangers.
Great to have a rant - and now I can update my own blog for the first time in months.
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Hi Philip,
Russell alluded to my talking about human diversity in place of disability on Wednesday night. That's part of it but I'm actually more interested in diversity of experience and how we describe and value it.
I'm hugely aware of that with our boys. It was a large and useful step to grasp that they weren't going to see things my way because their experience of the universe was profoundly different to mine.
For instance, look at our quest for "normality" and the high value we place on our children "being normal". What if we reframed "being normal" as "having a common experience" and revalued it as somewhat dull and boring?
Parts of the autism rights community are big on that: they're neurodiverse and the rest of us chumps are neurotypical.
OTOH, I get frustrated with the there's-nothing-to-fix mantra. Some AS people do have cognitive problems that really make their lives hard to live. I wish for the day when our younger boy gets over his eating problems. Most food looks, smells, feels and tastes repellent to him, which, obviously, severely limits his diet.
(It's actually been a good week, though. As part of an incentive scheme of his own devising, he wrote a 2000-word essay on the Wrath of the Lich King extension to World of Warcraft and then -- which was a bigger deal -- consented that it be posted to the WoW community on NotSchool, the online learning programme he rather reluctantly participates in. He proceeded to completely pwn some other kid on the forum who insisted that Warhammer was better, but hey ...)
I also have a story up on Humans from an Asperger woman who finds life hard to live and is anxious and angry about what's happened to her. Actually, if anyone wanted to do a good deed, a friendly and supportive comment under her story would be cool ...
Great to have a rant - and now I can update my own blog for the first time in months.
Link whore! ;-)
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OTOH, I get frustrated with the there's-nothing-to-fix mantra. Some AS people do have cognitive problems that really make their lives hard to live. I wish for the day when our younger boy gets over his eating problems. Most food looks, smells, feels and tastes repellent to him, which, obviously, severely limits his diet.
Ah, but is that about the value placed on eating food orally and tasting it? I have a friend in Adelaide who, because of his unique function, can't swallow many times of food. So he now has a food tube directly into his stomach. He now eats small amounts of what he can and supplements it with his "direct line". I saw him the other week and said I'd quite fancy getting one because, quite frankly, eating for me is tedious often and, at times, damn difficult, especially in public. I'd love the choice to eat just what was easy and enjoyable, while popping food into my belly directly for sustenance.
Why couldn't this be an option for your son? He could then just enjoy what he liked and not have to see, smell, feel or taste the rest.
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Re Kimberley. The Donald Beasley Institute in Dunedin was contracted to do some research on the effect of the closure. While their research on the attitudes of staff who worked at Kimberley might support Joe's theory, some other aspects of their research strongly refute this.
For the last time, Hilary, "theory" has nothing to do with anything I've posted here. I'm not claiming any professional expertise. All I'm doing is expressing opinions drawn from my own experiences.
Right now I have an issue with a close neighbour who's recently moved in after being released from jail. From my experience of such people I believe that it's a tragedy that someone like him should ever have been imprisoned. The poor guy is friendly, perhaps overly so, and is being taken advantage of by some very unpleasant associates, leading to daily visits from the police. The kind of petty pilfering that's been taking place in the neighbourhood is either done by or at the behest of these people. For example, he told me he'd like to start a garden. I gave him tomato plants, but soon after others in the area lost garden tools and equipment, which were quickly traced to and recovered from the hapless jailbird. He offered the excuse that he couldn't afford such things, and a "mate" had put him up to it.
I have enough experience of the Kimberley centre - precisely what form of experience is, as 81st Column would say, a story for another day - to know that my unfortunate neighbour would have received a degree of protection there that he simply doesn't have in the outside world. For example, at one stage Kimberley's Villa 8, for mature and capable male patients, had a magnificent aviary. I remember the pride of one of the patients as he gently lifted the lid of a nest box to show me a fantail pigeon on a clutch of eggs. My poor neighbour may be exercising his right to live in the community, but I truly fear that there's little I can do to stop him returning to jail by Christmas.
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Link whore! ;-)
Just leveraging, Russell, just leveraging :-P
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And how is "unique" any different from "special"?
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It's not much different at all (see below), except that "special" has taken on a schmultzy, sickening connotation, which "unique" doesn't yet have. It will, eventually, and we'll have to change language again to reflect new ideas, identity etc, in the same way that the changes catalysed by the civil rights movement was paced by language, ie. Negroes, Black Americans, African Americans.
Edward de Bono makes this point. He says that language is simply a symbol of meaning that changes as meaning changes. So he advocates changing langue to reflect as well as encourage changes in meaning. In fact he makes up words to avoid existing connotation "sticking" to existing words. The word "gay" -- a mneumonic [sp?] for Good As You -- is an interesting case of a hybrid -- it existed before and was a word made up by the gay community who rejected "homosexual".
Disabled people could do with making up a new identity descriptor, methinks.
spe·cial adj
1. distinct, different, unusual, or superior in comparison to others of the same kind
2. of the greatest importance
3. regarded with particular esteem or affection
4. unique to or reserved for a specific person or thing
5. made or used for a particular purpose or occasion
6. planned for a specific occasion
7. in addition to or more than is usual
8. designed or intended for educating children who have physical disabilities or learning difficultiesu·nique adj
1. being the only one of its kind
2. superior to all others
3. different from others in a way that makes something worthy of note
4. limited to a specific place, situation, group, person, or thingEncarta® World English Dictionary © 1999 Microsoft Corporation. All rights reserved. Developed for Microsoft by Bloomsbury Publishing Plc.
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I also have a story up on Humans from an Asperger woman who finds life hard to live and is anxious and angry about what's happened to her. Actually, if anyone wanted to do a good deed, a friendly and supportive comment under her story would be cool ...
Done.
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The report (2007) can be found on the www.dia.govt.nz website - called Te Aiotanga: Report of the confidential forum of former in patients of psychiatric hospitals (or something similar).
Confidential Forum for Former In-Patients of Psychiatric Hospitals for those playing at home
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Around 1990, i worked for a while at a hostel for people with mental health dilemmas - about 12 lived in, with a fulltime carer, I used to relieve so she could have time off. I don't know how it compared to other similar places, we certainly tried to be a bit laid back. We had a big garden and grew quite alot of food, everyone was rostered for cleaning and cooking, or most would simply have stayed in bed or in their armchairs. I found humour to be my best friend in getting to know people and earning their trust. Most of our residents had been in Porirua, Lake Alice or somewhere similar - some were glad to be out, others weren't. Almost all would not have survived outside a supported environment where someone kept an eye out, organised, made the effort to be inclusive. Some had employment, others went to sheltered workshops, and others couldn't have coped with any kind of regular job.
i just think that there are people who need sanctuary in this world. And it's cruel not to provide it. There is a place for independent living and one for shelter too. As for "institutionalisation" - how many of us work in hospitals, schools, tertiary education, govt departments, etc etc? They are all institutions. It's not the building and routines that make it a bad thing. It's always how we go about running them.
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Ta, Philip. "Unique" and "special" do seem the same, and here's perhaps where we differ about the implications of that (diversity in action):
I'd say that belonging is important to more people than being distinctive is. While those people with attention-seeking exhibitionist personalities (ie: performers, politicians or small children) may be perfectly willing to trade off blending in for getting their needs met, others just want an ordinary life with no fuss and without having to be part of some kind of freakshow to justify that. Whatever social change we pursue must acknowledge this.
As a society we aren't doing a good enough job of honouring the values we already profess, without putting energy into making new ones.
Dignity and privacy are important to many of us, and especially our older citizens. So are compassion, achievement, fairness and a bunch of other useful values. Contribution is one I'm particularly fond of, so I am glad the attitude awards recognised that.
Time for dinner.
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alas, I forget how scared most people are of being different, let alone in a way worthy of note, and how important it is to fit in. Not to mention how our popular culture teaches us to catastrophise and demonise anything out of the ordinary.
I first heard you talk, Philip, quite a number of years ago when I was at (the then) ACE training to be a kindergarten teacher. I believe you had a friend who was a tutor in ECE. Anyway, I seem to remember that you talked of the common room for "special needs" students at your school, and the advantages and disadvantages of such a place, and you talked about the politics of the "disabled". You were funny, engaging, articulate, and, best of all, acerbic. And you impressed me greatly. I had always thought of myself as being egalitarian, but you made me question that. Because, it turns out, as long as a person could communicate with me verbally, I was fine. However, if a person was nonverbal in their communication, and if that communication took some time, I was a lot less willing to engage. There was a guy in the cafe at ACE, one day, having difficuty with his drink. I stopped to help him, and he wanted to talk. He used a speech board. And I couldn't get out of there fast enough. Since then, I've taught many children, some of whom were clients of GSE, some of Ohomairangi - and I thought alot about that guy at ACE who only wanted to talk. Made me a better teacher, that's for sure. So thanks, Philip. In the ECE world, there's a lot of talk of being reflective practitioners, and you certainly were a part of me taking stock of a few of my attitudes.
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. . . mental health dilemmas
:)
i just think that there are people who need sanctuary in this world. And it's cruel not to provide it. There is a place for independent living and one for shelter too. As for "institutionalisation" - how many of us work in hospitals, schools, tertiary education, govt departments, etc etc? They are all institutions. It's not the building and routines that make it a bad thing. It's always how we go about running them.
Beautifully put.
There's a "community house" in my area that provides pretty much that kind of facility. While I wouldn't criticise the quality of care the residents receive, for all the interaction they have with the local "community" they might as well be in one of the historical psychopaedic institutions. These are people who are unable to catch a bus or even visit the corner shop without protective supervision.
While many of the residents are in touch with family in the wider community there are a number who wouldn't receive Christmas presents if it weren't for volunteers from the community. Some might be surprised how many of these good samaritans are former psychopaedic nurses, often very elderly, who know and care enough to help where it's needed.
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While those people with attention-seeking exhibitionist personalities (ie: performers, politicians or small children) may be perfectly willing to trade off blending in for getting their needs met...
LOL do I sense an implication?
... others just want an ordinary life with no fuss and without having to be part of some kind of freakshow to justify that. Whatever social change we pursue must acknowledge this.
I never talked about a freakshow, although again your implication that freakshows are somehow negative is interesting. Celebrating unique experience can be as introverted or extroverted as one wants to be.
But I disagree anyway. I think people want to be acknowledged as individuals just as much as being part of a group. And I think awareness of individual identity is a prerequisite to belonging anyway. How can you truly belong if you do not have a strong sense of who you are?
Belonging with no sense of identity is what we have in society now - people looking outside themselves to others, to the media, to religion, to politics - to define themselves, fearful that if they don't fit in they'll be cast out. It's what makes young kids struggle with their sexuality, join gangs, commit suicide.
The compulsion to belong -- ironically, I believe -- leads to isolation.
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It's not the building and routines that make it a bad thing. It's always how we go about running them.
I agree also.
I was once asked my thoughts on systemic change. I said, it's a bit like driving. Give a bad driver a Rolls Royce and you'll be lucky to get where you want to go in one piece. Give a good driver a clapped out mini and you'll get there safely. And if they know about cars, even if it breaks down, they'll know how to fix it enough to get where you need to go.
Any organisation needs systems and people to drive them. But a great system with lousy people is ten times worse than a lousy system with great people.
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Yes, Joe, I too am rather cynical about what "community" means now. Suburbia is, by and large, deserted five days a week apart from oldies, a few young mums & kids (very few as it's now not the done thing to bring up one's own children, but put them into daycare at the earliest opportunity), and assorted others who don't do recognised work. All the busy families don't have spare time & energy to care about anything much beyond meeting their essential needs and a bit of entertainment.
If someone's scratching out a living on a sickness benefit, they're not going to be able to afford sports fees or club subs or even to go on a proper holiday. participation is limited by economics, even if they're brave enough to join a club.
There's still compassionate people around, but the old style community where you knew all your neighbours and helped each other out is gone - where kids ran in & out of any old house in the street and got to know everyone, with all their idiosyncracies. People just pitched in and did a little something to help - and all those little somethings added up to quite alot.
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