Hard News by Russell Brown

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Hard News: Emma Hart is a werewolf

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  • Hilary Stace,

    Granted if I'm describing deafness then deaf is just fine.

    Well that depends on how individual deaf people like to describe themselves. Some use Deaf (with a capital D) as they consider themselves a cultural/linguistic minority. Others are happy with deaf, or maybe hearing impaired. Unfortunately, you can't make assumptions, but best to check with each person as you've done.

    Wgtn • Since Jun 2008 • 1901 posts Report Reply

  • Emma Hart,

    Granted if I'm describing deafness then deaf is just fine. But what if I'm referring to one of several possibilities?

    In the interests of satisfying general interest, no, it probably isn't.

    'Deaf' with a capital D means culturally deaf. Someone who is part of the Deaf community, someone who uses NZSL.

    My daughter is hearing-impaired. This isn't political correctness: she has a lower level of hearing loss - severe, rather than profound. She is not deaf, and somebody who was Deaf might be offended to see her described as Deaf.

    Minefield? You bet.

    Christchurch • Since Nov 2006 • 4285 posts Report Reply

  • Bart Janssen,

    Oh no :(

    Good grief I don't think I ever knew there was a difference between Deaf and deaf. And now you've pointed it out it makes sense.

    Hearing-impaired makes sense too, heck I'm slowly but surely heading that way myself especially from the right ... and if someone is asking me to do something.

    So apart from making mistakes and then hoping for forgiveness what words should one use? BTW that sentence was hard to figure out without stepping into the minefield.

    I'm serious, I cause enough offense with my opinions as it is without doing it accidentally as well.

    Auckland • Since Nov 2006 • 3108 posts Report Reply

  • Steve Parks,

    I'm not suggesting that, but it is a thin edge of the wedge thing.

    Not really following you : no one has suggested she was disabled (including you) and this is not about actively ending her life (as with the Nazi example); this is not even not euthenasia. The doctors, at the request of the father, removed artifial life support after 17 years.

    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.

    Who are these others? ...

    Politians like Berlusconi? I don't care what Berlusconi thinks.

    The family? They appear to be the ones wanting to stop the life support, in this case.

    Eluana? Agreed, her values/perspective here is the most important, but unfortunately we cannot ask her what she would want. That's what makes this a tricky issue, if that's what you mean.

    Wellington • Since May 2007 • 1122 posts Report Reply

  • giovanni tiso,

    Yeah, I'm not really seeing the thin edge of the wedge thing either, and took an extremely dim view of campaigners, including the odd (very odd, actually) disability advocate and the hordes of pro-abortionist ones who turned the issue into 'their' thing. To those people I'd say that nothing justifies torturing a woman and her family, and that at any rate compassion has to go around and be applied to the suffering and discrimination of all.

    I think you'd also have a pretty difficult time arguing that in the countries that have limited euthanasia laws and allow people some say in the manner in which they will die, people with disabilities are afforded less dignity than they are elsewhere.

    Wellington • Since Jun 2007 • 7315 posts Report Reply

  • Mark Harris,

    Bart
    The area of life commonly and under protest referred to as the "disability community" is no more complex than any other community. Which is to say incredibly fucking complex.

    There are not protocols you can learn for dealing with those of us who are so defined that will cover every facet, just the same as there are no nationwide protocols for dealing with Māori that apply across all marae, iwi or hapū.

    The key thing is to treat people with respect and ask where you are not sure.

    A blind friend of my acquaintance refers to "blindies and crips" and she's not talking gangs. I'd never use that phrase, except with her, because others might see it as offensive, even though I'm damn near a 'crip' in some lights myself.

    Some, in a black-humoured way, are okay with being labled as 'disabled' - it's just a label, after all and on the whole I'd rather be disabled than an accountant. But many don't share that joke.

    There are some who don't want to be seen as different in anyway from anyone else, and will take offense if you treat them differently.

    We are legion, and I'm afraid we're all individuals. Personally, I prefer you to say what you think in order to get the job done and I'll let you know if I'm offended ;-) (just like an "able" person would ;-)

    Waikanae • Since Jul 2008 • 1343 posts Report Reply

  • Mark Harris,

    Re the gravatar: what browser are you using on what OS?

    Waikanae • Since Jul 2008 • 1343 posts Report Reply

  • Christopher Dempsey,

    disabled. I hate that word. I HATE it.

    Christopher, please, what word do I use instead? Not being snarky just a pure honest question because damned if I can find a word that describes er you know ... that hasn't been made derogatory. I end up with that word because it feels accurate without being as derogatory as some others.
    Granted if I'm describing deafness then deaf is just fine. But what if I'm referring to one of several possibilities?

    Thanks for asking Bart.

    Use differently abled instead. 'Dis' - abled removes the person to whom you are applying the label from society. 'Dis' indicates a lack of ability, which is not true of course. And lord knows that 'ability' is critical in our society, culture - it says in part, who we are.

    I myself have a ton of abilities, and I suspect that even the most 'disabled' person, mute and incoherent, unable to move except in basic ways, has abilites - by being that person make us think, and trust me, that's an ability. Our abilities are there - they are just different.

    So, I'm differently abled.

    As for deafness, I prefer hard of hearing. I'm not Deaf as my loss is moderate to severe and I have some residual hearing, which permits me to function in a hearing world - to a degree. But functioning in a hearing world, even with hearing aids, taxes my mental resources so it's exhausting sometimes. Smiling and nodding goes a loooooong way sometimes.

    Again, thank you for asking Bart, it's appreciated.

    Parnell / Tamaki-Auckland… • Since Sep 2008 • 635 posts Report Reply

  • Russell Brown,

    Interesting conversation.

    The one that's thrown me so much that I don't quite feel up to addressing it is the pre-natal test proposed by Simon Baron Cohen et al for autism spectrum conditions.

    The thing that makes like a thought experiment is that the technique -- measuring testosterone levels in utero -- is very coarsely-grained. From what I can make of it, you only know if you have a high chance of an ASD child -- you don't know if you're getting a non-verbal child who needs constant care, or Einstein.

    Perhaps I'm biased, but I think all ASD lives are worth living. Not everyone will think that way. But even then, there's a huge societal risk in losing ASD.

    Bram Cohen, the creator of the BitTorrent protocol, is Asperger syndrome. If he wasn't, he might not have been moved to create a rules-based protocol for reciprocal relationships (most of us don't consciously form rules, we just muddle through). It would be a serious bummer if we lost those people. We need systematising nerds.

    But that risk is real -- and, ironically, it's heightened by the kind of "cure autism now" campaigning that is common in the US.

    There's a huge and unpleasant war between groups of parents who desperately want their child "cured" of autism, and the autism-positive people. The latter, I think, frequently ignore the massive and distressing challenges faced by parents of ASD kids, and the former are almost contemptuous of who their own children actually are. The guy who runs the "Hating Autism" blog is just scary.

    Anyway, my personal language point is that I don't talk about people "having" Aspergers. I say our kids are Asperger. It is who they are. And understanding that has been an enormous help in understanding who everyone else is. It's quite a bonus for a journalist.

    Auckland • Since Nov 2006 • 17938 posts Report Reply

  • Hilary Stace,

    Who are these others?

    People who don't get a say, because others in positions of power or judgement can't see beyond their own prejudices, and so have decided their life has no worth or quality.

    I see this as possibly leading to the situation where murdering a disabled person (eg a child), or even withdrawing care as in the case of a disabled child in some societies is seen as less of a crime, than killing a so-called normal person.

    It all comes down to what our view of people. I say that we are all equally human and no one has right to say one human life is more valuable than another. Others of course disagree.

    And re disability language I hope Martin contributes to this discussion as he has written about this from an academic disability rights perspective.

    Wgtn • Since Jun 2008 • 1901 posts Report Reply

  • Hilary Stace,

    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?'

    Wgtn • Since Jun 2008 • 1901 posts Report Reply

  • Russell Brown,

    As for deafness, I prefer hard of hearing. I'm not Deaf as my loss is moderate to severe and I have some residual hearing, which permits me to function in a hearing world - to a degree. But functioning in a hearing world, even with hearing aids, taxes my mental resources so it's exhausting sometimes. Smiling and nodding goes a loooooong way sometimes.

    My friends in Wellington have a friend in the moderate-to-severe range. She parties with the best of them, and participates socially when people can remember to face her when they speak. But even then, I've known that she's sometimes smiling-and-nodding. I imagine that it works to have another drink and go with the flow.

    But that fatigue, I suspect, is common across the differently-abled sector. Our older boy has generally been utterly exhausted for his first two terms at a new school.

    I use the graphics card metaphor: the rest of us are wandering around with the latest Nvidia 3D graphics in our heads. ASD people are doing it all on the CPU. Life is a resource hog.

    Auckland • Since Nov 2006 • 17938 posts Report Reply

  • Russell Brown,

    Diffabled is a word.

    Auckland • Since Nov 2006 • 17938 posts Report Reply

  • Steve Parks,

    People who don't get a say, because others in positions of power or judgement can't see beyond their own prejudices, and so have decided their life has no worth or quality.

    I don’t see it as anyone saying her life was worthless as such (and I'm sure her father didn't think so), but how long are we justified in artificially forcing someone to stay alive when they would otherwise have died, naturally. (The most important thing, of course, is what they want, but sometimes we have to surmise what they would have wanted from the views of family and friends.)

    I see this as possibly leading to the situation where murdering a disabled person (eg a child), or even withdrawing care as in the case of a disabled child in some societies is seen as less of a crime, than killing a so-called normal person.

    As per Giovanni’s remarks, I don’t see any correlation between countries allowing people to die in this type of circumstance and less rights or respect for people with disabilities.

    It all comes down to what our view of people. I say that we are all equally human and no one has right to say one human life is more valuable than another. Others of course disagree.

    I broadly go along with “all people’s lives are equal”, but it isn’t for me to tell someone else they must continue to live, in all circumstances, no matter what, when they may not want to. This means I think you can consistently believe that all human life is equal, and still say there needs to be a limit to how long we artificially hold someone alive.

    Wellington • Since May 2007 • 1122 posts Report Reply

  • giovanni tiso,

    What Steve said.

    Wellington • Since Jun 2007 • 7315 posts Report Reply

  • Islander,

    "Life is a resource hog."

    Aint it, but.

    This is not challenging anyone, or anybody's stance - but there is the matter of common English useage.
    "She's blind as a bat." Ur, no: bats generally have good vision, and wonderful echo-location abilities.
    "She's *so* shortsighted." Meaning, incapable of realising/envisioning future consequences.
    "She's never been able to see the wood for the trees." Well, actually, that's true - up until I was nearly 7, I couldnt see the wood (forest/bush) but I could see the trees...after I'd smacked into them. And I could see details of & in the bark that ordinarily-sighted people couldnt, without magnifying glasses. But - that isnt what that saying means, eh?

    And multiply these relatively harmless sayings with hundreds of much more hurtful ones...

    I go along with -Steve P, I think? (Sorry have lenses out, and scrolling back pages is somewhat daunting at the moment) both about 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. Yes, there have been at least 2 fascinating examples of people thought to be braindead - but becoming conscious (in a rather limited fashion)- but they do not apply to unfortunates like Karen or Eulalia.

    Big O, Mahitahi, Te Wahi … • Since Feb 2007 • 5643 posts Report Reply

  • Emma Hart,

    She parties with the best of them, and participates socially when people can remember to face her when they speak.

    This is, IMO, much more important than semantics: remembering to face someone who's Deaf/deaf/hearing-impaired when you talk to them. And if they identify as Deaf, to make sure you keep looking at them when they're talking. We're conditioned that it's rude to stare. In Deaf culture, it's rude NOT to stare, because it means you're not paying attention.

    The vast majority of people we've met in the Deaf community are perfectly lovely, and asking what they want to be called will go down just fine. If someone's determined to be offended, they will be no matter what you do.

    Christchurch • Since Nov 2006 • 4285 posts Report Reply

  • Joe Wylie,

    I worked for a company in Australia that employed a deaf guy as a trainee. As most of their employees thought with some justification that management were tossers, I remarked to his supervisor that perhaps they weren't such a bad lot to give a deaf person a chance. Nah, she said, it's a cheaper way of assuaging their guilt about such things than having to put in wheelchair ramps and special toilets.

    What she did do, though, was take the initiative to call a deaf organisation, who sent someone around to explain pretty much what Emma's stated above, plus some basic signing. It was a great move for everyone.

    "She's blind as a bat." Ur, no: bats generally have good vision, and wonderful echo-location abilities.

    Only the microchiroptera. The megas - flying foxes of all types - get by purely on their eyesight. That's my pedant quota for the year gone.

    flat earth • Since Jan 2007 • 3291 posts Report Reply

  • Sacha,

    For my sins I have a professional as well as personal interest in disability language. Like everyone, we're complex people with many parts. Disability may be a bigger or smaller part of who we are at any particular time.

    One on one, I reckon by all means ask what people prefer if you are not sure.

    We have all learned terms from different places and times. For instance, you will often hear older people using words that younger folk wouldn't dream of (and yes the Billy T James effect applies and disabled folk ourselves can throw all sorts of rude terms around).

    Older people with impaired hearing tend to call themselves "hard of hearing". I often wonder how people with a high degree of deafness get to be called "profound" while others like wheelies have to settle for "severe".

    I agree with Emma that there are some combinations of words and people that will just provoke a response that you don't expect and can't necessarily avoid. As Craig said, putting excessive effort into avoidance can cause weirdness in itself.

    In my experience, most disabled people pay far more attention to what you do and your overall attiude than to the precise words you're using.

    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. Still trying to catch up on post-Foo life and admiring the wave of s92 action.

    Ak • Since May 2008 • 15715 posts Report Reply

  • Islander,

    Urm, I thought I posted a reply thanking Joe for his correction re the visual capacities of the megachiroptera? Seems it's vanished into the Great Ghostnet-

    Big O, Mahitahi, Te Wahi … • Since Feb 2007 • 5643 posts Report Reply

  • Christopher Dempsey,

    I use the graphics card metaphor: the rest of us are wandering around with the latest Nvidia 3D graphics in our heads. ASD people are doing it all on the CPU. Life is a resource hog.

    Word. And sometimes the CPU is last century's model.

    And thanks for finding the word diffabled. That's what I am. That's what my two brothers are. Diffabled. :) You've made my day. Thanks.

    I agree with all who've said that a) being diffabled is a little part of me but a big part sometimes b) that the diffabled community mirrors the abled community in all it's glorious wonderous diversity

    For my part, most people are GREAT when they realise I wear HA's (hearing aids). I remember often the kindness of a political opponent who, in a meeting, deliberately and with care asked if I could hear ok - it was a big meeting. That he took the time to check and care made me feel great.

    Perhaps I'm biased, but I think all ASD lives are worth living. Not everyone will think that way. But even then, there's a huge societal risk in losing ASD.

    Bram Cohen, the creator of the BitTorrent protocol, is Asperger syndrome. If he wasn't, he might not have been moved to create a rules-based protocol for reciprocal relationships (most of us don't consciously form rules, we just muddle through). It would be a serious bummer if we lost those people. We need systematising nerds.

    We certainly do need them. Diversity is key, and the different skills, abilities and wonderous natures of different people makes for an interesting world.

    Last night I was thinking that perhaps the Disabilities Act could be re-conceptualised as the Diffabilities Act, and a concept created where there is a continuim of abilities, and some provision is made for those at the more constrained end who need pragmatic assistance to express their abilities, and a little less provision for those less constrained, all the way up to the fully able end where there is no provision.

    You'd be looking at diffabilities on an abilities scale which to my mind seems to place emphasis on ability not the absence of ability.

    Just a thought. But I'm game to lobby to rename the Disabilities Act the Diffabilities Act.

    Parnell / Tamaki-Auckland… • Since Sep 2008 • 635 posts Report Reply

  • Sacha,

    the different skills, abilities and wonderous natures of different people makes for an interesting world

    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.

    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?

    Ak • Since May 2008 • 15715 posts Report Reply

  • Hilary Stace,

    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.

    Wgtn • Since Jun 2008 • 1901 posts Report Reply

  • Hilary Stace,

    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.

    Wgtn • Since Jun 2008 • 1901 posts Report Reply

  • Islander,

    Kia ora Hilary - microcephalics have NO portion of their brains that enable them to act -let alone think- as people. Most of them cant even breathe by themselves. Two of my remaining sisters are midwives. It was common practice to set microcephalics aside, make them comfortable (however that was construed), and leave them to die naturally.

    The second part of your post I totally agree with. Most of my family - I mean the adults! - have made living wills, power of attorney coda, and other instructions to deal with "what I want done when death comes."

    We love life. We know death happens to us all. We do the best we can, meantime-

    Big O, Mahitahi, Te Wahi … • Since Feb 2007 • 5643 posts Report Reply

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