Hard News: Emma Hart is a werewolf
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So on these sorts of issues - like this case - we need to be aware that our own values and perspectives are our own and not universal. What seems straightforward to us, may actually have negative implications and repercussions for others.
And do you really want me imposing Catholic canon law and doctrine on you? If Italy wants to become a theocracy, where a competent adult citizen has NO RIGHT TO DECLINE MEDICAL TREATMENT OR INTERVENTIONS, so be it. But it's no country I want to go anywhere near.
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In the 50s and 60s there were a number of microcephalics at the Levin Hospital and Training School, which later became the Kimberley Centre. I remember them because I grew up in a staff house on the hospital grounds. While I had the privilege of knowing a number of the residents there, I never had the impression that microcephalics were the kind of people that you might form anything other than a caring and protective attachment to.
I did encounter one when I was a teenager, who'd happened to wander at least a kilometre from his 'villa' into the neighbouring paddocks. When I spoke to him he seemed alert but unresponsive, almost like a bird. He was, I'm certain, a bone fide microcephalic, and while he showed no aptitude for speech he was certainly capable of negotiating fences and gates, not to mention breathing.
I do find the concept of an advocacy group of microcephalics to be purely hypothetical, though. The last sufferer from cretinism in NZ was an elderly woman in the 1960s, who presumably passed away from natural causes. Thanks to medical advances in the treatment of congenital hyperthyroidism the condition is now practically unknown in the developed world.So, if an advocacy group by and for sufferers had been formed in time, might they have opted for a different outcome? Personally I find such a possibility as far-fetched as animals forming animal rights advocacy groups. There's a real issue here of defining the needs of the vulnerable, which won't be solved by casting 'society' as some kind of crudely oppressive force bent on violating their rights. That has never been the main thrust of our history in NZ.
While I don't doubt Islander's midwife story 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.
I believe that we should learn from our history of how such things were treated, rather than subscribe to a form of received wisdom that most of what happened in the past was utterly barbaric. While there's been some dreadful institutionalised cruelty to psychiatric patients in this country, by and large the treatment of those with major intellectual disabilities has been progressive by world standards.
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Kia ora katoa- my midwife sisters have corrected me - it was anenocephalics who were quietly left aside. My bad. Apologies.
Microcephalics - pinheads - can live and breathe & --- but they're not functioning humans/people.And I agree o the Grok - I think - as a nation - we've done the best we could at the time for the severely intellectually impaired, and the mentally diseased ( and I use the latter term advisedly: some of my family have mental diseases - and they do feel dis-eased...)
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Russ, Simon Baron-Cohen is not proposing that the in utero testosterone level can be used as a test for autism. The research does not suggest that, it is only investigating the possibility that testosterone levels might play a role in autistic spectrum phenomena, not even autism.
The most he has done is call for a debate about what might best be done if a hypothetical test for autism could be developed. He is right that debate needs to be had and the polarisation you rightly describe would probably talk past each other over it.
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I say our kids are Asperger.
That is a term I can live with. Thanks RB.
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I note that we don't yet have a Disability Act, let alone a Diffability one. I do like the idea of that word but is it just me or does it risk sounding like a lisp?
I tried doing a lisping sound, but it is difficult. It's you methinks.
Agree, although we have some way to go to make a more compelling case than "interesting" for some of our harder-nosed decision-makers. I would be interested to hear your thoughts on that, Christopher.
The EEO did a good education campaign in mid/late 90s about the business case for diversity in the workforce. Other than that - I'm going to have a wee think about this...
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I want to think more about the names thing before posting.
But just a couple of comments about Autism testing etc.
The reality is that over the next 50 years, which is not that long, we will develop the ability to determine which genetic changes cause, or make it more likely that people will suffer certain diseases, eg Parkinsons or tooth decay. It is also likely that for many of those genetic changes we will be able to suggest treatments or drugs that will prevent the disease.
Now it's easy for tooth decay. Of course you want your child to have great teeth when they are 90. But the classic example is, if you could, should you prevent the child of a Deaf couple from being deaf? For example by reversing a genetic change in the feotus. That child might find society as whole easier but may be disconnected from the Deaf community.
Russell's personal example is in the same difficult category. We know people with different brains have difficulty in our society. If we could, should we make it easier for them? Do we have the right to make that choice for the child? Do we have the right to NOT make that choice for the child? Are these people with different brains the next step in human evolution?
These are really really difficult questions.
But developing a test that could identify an Asperger child early would allow the parents to prepare a different and better school experience for them. Surely that is a good thing? But the same test may allow parents to choose to not have that child.
These are really difficult questions that societies will have to deal with as we develop the knowledge and technology. There is no point in expecting us scientists to provide the answer to the social questions. Because while we may understand the technology and may have been talking about it a few year earlier than the rest of society, we are simply members of society too and able to get it as wrong as anyone.
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However, when it comes to addressing groups in big social and political processes then the language we use does matter. I want to discuss that in a separate post rather than rushing it here.
And I look forward to it, Sacha, because I'm sure it will be typically thoughtful and provocative, in the very best sense. But I'm the kind of person who would rather put the energy that so often gets frittered away on parsing semantics into engaging with the substance of what's being said. (And I agree Emma is right -- there's always going to be someone from the little village of High Dudgeon in the audience, no matter what you say. Spend your life trying to satisfy them, it's a one way ticket to whatever brick wall you bang your head against.)
I know it's not a perfect analogy, but anyone who knows me knows that you better not call me a "queer" unless your dental insurance is up to date. For me, it's a term -- much like "nigger" -- that has no positive or inoffensive connotations in general usage. (BTW, I'm far from convinced by the whole idea that you can "reclaim" or "re-contextualise" poisonous hate speech, like taking small, regular doses of snake venom to build up an immunity. Nice theory, shame about the reality it has to operate in.)
OTOH, the all-inclusive word salad of "gay, lesbian, bisexual, transgendered, inter-sex, questioning or other" hits my ear like a cartoon anvil, and I can sympathise with those who drop the Q-word in that context.
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I'm far from convinced by the whole idea that you can "reclaim" or "re-contextualise" poisonous hate speech, like taking small, regular doses of snake venom to build up an immunity. Nice theory, shame about the reality it has to operate in.
What pisses me off is that it seems as though each new word that is used gets turned into a derogatory term by the haters.
It's like trying to keep ahead of Flu virus, every new Flu jab is defeated by the next virus.
In the end the only word that is safe is the person's name, although that didn't help Neil when I was a teenager.
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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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Another study reported in New Scientist implicated high levels of uterine testosterone as a cause of successful financial trading in the resulting adult children!
Ugh!
It is a very natural human trait to see correlation and think causation. I'm betting most people are genetically wired that way.
But epidemiology, the statistical study of disease and health in populations, is rife with correlations that later proved to be either plain wrong or irrelevant.
It's an incredibly powerful science but it is just horrible when it gets reported in the press.
That there is a correlation may be real (may not be because it's really easy to do these studies and get the wrong statistical answer because your sample group was biased in some way you hadn't realised).
But the linkage may be several steps removed from testosterone and may even be well removed from events in the uterus. Women with high in-utero testosterone may be attracted to men with a genotype that is linked to mathematical skills which is in turn linked to a pheromone they produce.
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Women with high in-utero testosterone may be attracted to men with a genotype that is linked to mathematical skills which is in turn linked to a pheromone they produce.
"Mmmmmm, smells like... maths."
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It is a very natural human trait to see correlation and think causation. I'm betting most people are genetically wired that way.
But epidemiology, the statistical study of disease and health in populations, is rife with correlations that later proved to be either plain wrong or irrelevant.
It's an incredibly powerful science but it is just horrible when it gets reported in the press.
Yup, and while I've just given up expecting the standard of science reporting (and general statistical literacy and numeracy) in the MSM to ever improve, I sure hope the New Scientist was pretty careful about the distinction.
While it's not a peer-reviewed journal, it is still a pretty influential outlet. I'd argue that it's probably the highest profile science/technology magazine (with the arguable exception of Scientific American) among non-specialist audiences.
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Just to muddy even further, did they look at exceptionally poor trading skills? Maybe it causes risk-taking behaviour, which in a trader will produce extreme outcomes at either end... it depends what you call "successful trading".
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I sure hope the New Scientist was pretty careful about the distinction.
I'd hope so too Craig
So from the PNAS paper (the original peer reviewed article) we get
Our results suggest that prenatal androgens increase risk preferences and promote more rapid visuomotor scanning and physical reflexes. The success and longevity of traders exposed to high levels of prenatal androgens further suggests that financial markets may select for biological traits rather than rational expectations.
Key words here are "results suggest" and "may select". A quick skim of the paper shows that the linkage is not strong and performance is at least as strongly linked to experience as finger length ratio (which is used to infer androgen exposure in utero). There are more caveats in the discussion pointing out this only applies to the short term fast traders.
From New Scientist we get
SUCCESSFUL financial traders may be born, not made. Men who excel at fast-paced financial trading may have been exposed to higher levels of testosterone in the uterus than their less successful colleagues.
but they also get someone to say this
The study confirms that exposure to sex hormones early in life enables particular behaviours to develop, says Bruce McEwen of the Rockefeller University in New York
The problem is that while New Scientist retains the weasel words that are so important in the journal paper, most lay readers will think that what was said was in-utero testosterone causes...
Interestingly the paper also goes on to talk about the reverse correlation for maths and science departments and that long term investment traders are hired from those areas. That is, maths and science departments are full of people whose finger length ratios suggest that they have been exposed to less androgen in utero. And since anecdotal evidence suggests that there are a lot of Aspergers in maths and science departments you could look at the same paper and say Aspergers is correlated to less in-utero testosterone. Confused yet? See why I hate epidemiology?
But New Scientist did OK.
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Just a note. I don't mean to criticise Hilary about her interpretation of the New Scientist article. Science writing is a different language there is no way a lay reader can be expected to know how scientific writing uses weasel words like "may" or "suggests" etc.
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Thanks Bart well put.
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People First is a self-advocacy organisation for people with learning disabilities (their preferred term) and I'm sure it has members with microcephaly.
Sure Hilary. And if the entire site wasn't designed, built and maintained by those with profound intellectual disabilities then I'm sure it's only due to the entrenched prejudices of people such as myself.
Having spent a fair chunk of my adult life involved in raising someone with an intellectual disability, I'm not unfamiliar with the glib admonishments of those whose involvement extends no further than advocacy.
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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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Joe, I understand your wariness but from my perspective People First is a good organisation that was fostered by IHC for years and then split off and has thrived since.
It's not only for people with a high degree of intellectual impairment - and as you know, being impaired in one way does not mean anything for other aspects of a person. I have met People First leaders who are great at reasoning but not necessarily at concentrating or remembering.
In general, in every population group those attracted to and capable of leadership are not likely to be average.
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Hilary, Sacha - thanks. I'm not knocking People First. As I'm a little underwhelmed by my past dealings with IHC I'm certainly impressed that the organisation has moved beyond that association.
I've learnt the hard way that one should attempt to remain open to all developmental possibilities, even when such hopes are sometimes rewarded with crushing disappointments. In my own case I've been incredibly fortunate, though I know of others who've wondered what they've done to have such a burden placed on them.
I'm aware that advocates for the intellectually impaired must often deal with cases where family members exploit the vulnerable. When you're responsible for someone who aspires to enjoy what the world offers, but is at risk because they lack the developmental skills, few things are more grating than receiving a well-meaning lecture on the rights of the disabled. I've felt a lot of resentment on occasion towards those who claim to know, but are able to confine their involvement to work hours.
I'm still somewhat troubled by references to people with profound and clearly identifiable intellectual disabilities being incarcerated against their will. While this no doubt happened, it certainly was never widely practiced in living memory. The notion that such people were largely potential Christy Browns or, Dog forbid, Forrest Gumps. is simply romantic.
Please consider that intellectual disabilities sometimes require a more intensive degree of care than any poor parent could provide. While many of the intellectually impaired continue to grow and develop throughout their lives, sadly there are those who won't, simply because it isn't physically possible. Along with a general advocacy of human rights for those with such disabilities we need to ensure that they receive appropriate care and support. Forgive me for harping on this point, but there are a disturbing number of people with intellectual disabilities in NZ whose 'rights' have only lead them to jail and alcohol abuse.
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Joe, one of my uncles was a psychopaedic nurse. He trained and worked at Templeton, and in the late 1960s, having helped my mother as much as he could, he headed to Canada. He experienced the 'emptying out' there, and arrived home again in the late 1980s just to see it start happening here.
We all know there were occaisions of abuse in State institutions (I think such institutions draw a certain kind of abuser whether they be run by State or religions.) But - a lot of halfway-house situations dont seem to have worked (I only know about the West Coast situation) and a lot of extremely vulnerable people - who *were* looked after at Templeton Farm School for instance- have totally fallen through the cracks.
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I'd argue that it's probably the highest profile science/technology magazine (with the arguable exception of Scientific American among non-specialist audiences.
Which may be true, but NS have admitted that the vast majority of their readership are scientists. This biologist uses it to keep abreast of the rest of science that isn't in the journals I read. I first became hooked because the Physiol dept at Otago had a subscription and I would read it in the common room with a cup of coffee. Now I have a personal subscription. I pass my copies onto a professor of Economics.
May family do read it, but they all either have a BSc or are studying for one.
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Joe, have you seen "Out of Sight, Out of Mind"?
Te Listener briefly noted in 2004:
Film-maker Gerard Smyth was asked in 1995 by parents of Templeton residents to produce a documentary that would help keep the Christchurch institution open. However, he found that, overwhelmingly, the residents wanted to leave as soon as they could.
Smyth’s inquiries led back to eugenics, or controlled breeding, a once-respectable movement that had legs until Hitler gave it a bad name. For many years before World War II, it was thought that disability could be bred out and, in 1928, the government here passed the Mental Defectives Bill, which established “psychopaedic” hospitals where the disabled were housed.
Denis Welch also did a good review in a later edition:
As Otago University professor Warwick Brunton explained, eugenics was a fashionable creed in the early 1920s, when the “scientific approach to having children” (remember Plunket and Truby King) held sway.
Many in the white West feared the adulteration of European blood by miscegenation. And not only was racial pollution considered a risk, but also the “mentally defective” were regarded as poor breeding stock. Theodore Gray, director-general of mental hospitals in 1927, said by excluding colour and those unfit to breed, New Zealand could have one of the “finest white strains” in the world.
Hence racist immigration policies and the tendency to lock away anyone thought likely to weaken that strain – and, as a further precaution, to segregate the sexes as well. (In the US, inmates were often sterilised.)
I understand Gerard was keen to do a follow-up doco broadly about eugenics in NZ.
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I'd argue that while NS is undeniably a high-level technical publication, it's pretty darn accessible. It helps if you're a rocket surgeon, but you don't have to be one....
And you could argue that it is peer-reviewed in the sense that they frequently publish letters that offer an opposing or different view of the data interpretation.
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