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Access: Right to die?

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  • Joe Wylie, in reply to Martin,

    prenatal screening is the new eugenics aimed at the elimination of disabled people in the womb

    While I have no problem with ensuring that any liberalising of the rules governing the right to die should absolutely protect the rights of the disabled, I’m reading that as advocating the privileging of the disabled over the supposedly abled, to the point where women will be compelled, even against their will, to carry a disabled foetus to term.

    flat earth • Since Jan 2007 • 4591 posts Report Reply

  • steven crawford, in reply to Martin,

    You gotta be kidding Steven.

    There's nothing funny about any of this. I try not to dismiss by trivializing, requests for human rights, to the best of my ability.

    Atlantis • Since Nov 2006 • 4310 posts Report Reply

  • Sacha, in reply to Joe Wylie,

    I recall Sacha appearing to make a case here for disability advocates to be given some form of counseling access to women who faced the prospect of giving birth to a Down syndrome child.

    My position as a member of the National Screening Advisory Committee at the time Down screening changes were proposed was that pregnant women and their families needed to make an informed decision.

    Currently they get bombarded with medical perspectives in a highly-pressured situation (and 90% of the time an abortion is the outcome). However, they are denied knowledge about what it is like to grow up with Down Syndrome, or to be a family with a member who experiences it. They must largely rely on what they already know about disability.

    I therefore suggested well-crafted video and written interviews and explanations, supplemented by access to people who could answer specific questions about what it's actually like. Only if people want that.

    Our committee's recommendation to the Director-General of Health and Minister also echoed what I wrote above about euthanasia - that investing in broader public disability awareness seemed a sensible counter-balance when you are about to implement policy that reinforces society's stereotypes about disabled people's value. That was of course ignored.

    Ak • Since May 2008 • 19683 posts Report Reply

  • Sacha, in reply to Joe Wylie,

    I’m reading that as advocating the privileging of the disabled over the supposedly abled

    It's not a zero-sum thing. We are capable of solving balancing acts like this in other areas of public policy.

    Ak • Since May 2008 • 19683 posts Report Reply

  • Joe Wylie, in reply to Sacha,

    It’s not a zero-sum thing. We are capable of solving balancing acts like this in other areas of public policy.

    Well that’s what I’d expect from you Sacha, given your past form here. But it’s not what Martin Sullivan appears to be saying.

    flat earth • Since Jan 2007 • 4591 posts Report Reply

  • Sacha, in reply to Joe Wylie,

    We have different approaches to activism, yes. :)

    Ak • Since May 2008 • 19683 posts Report Reply

  • Hilary Stace, in reply to Sacha,

    Thanks for that Sacha. Like Rosemary's earlier post it is informed by personal experience about how power and systems work in the real world.

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Sacha, in reply to Hilary Stace,

    Thanks. When it is clear something will be done regardless, sometimes the best we can do is lessen the harm.

    I'm pleased the committee chair included my recommendations in the final advice. Also managed some practical wins in the sparse consumer-oriented material created afterwards. However, lack of cohesive action or leadership around the issue was another pointer that we are not good enough yet at collective advocacy.

    Ak • Since May 2008 • 19683 posts Report Reply

  • steven crawford, in reply to Hilary Stace,

    And why is it different from euthanasia for baby girls (in certain cultures) because baby girls are of less value that boy babies?

    Are you talking about murder or abortion there?

    Atlantis • Since Nov 2006 • 4310 posts Report Reply

  • Sacha, in reply to Joe Wylie,

    to the point where women will be compelled, even against their will, to carry a disabled foetus to term.

    disabled people would have to be valued a heck of a lot more before that would ever happen.

    Ak • Since May 2008 • 19683 posts Report Reply

  • Joe Wylie, in reply to Sacha,

    to the point where women will be compelled, even against their will, to carry a disabled foetus to term.

    disabled people would have to be valued a heck of a lot more before that would ever happen.

    Which on the face of it appears to be Martin Sullivan’s agenda, and by unfortunate association possibly even yours. This is my problem with the blinkered nature of single-issue activism. Those who present any attempt at liberalising laws governing the right to die as a eugenicist plot to send Forrest Gump to the gas chamber can just as readily be accused of being stalking horses for the anti-abortion lobby.

    flat earth • Since Jan 2007 • 4591 posts Report Reply

  • Hilary Stace, in reply to steven crawford,

    After birth, so not abortion. Anecdotally common in many cultures. With baby girls not valued, disabled babies wouldn't have a chance of survival.

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Sacha, in reply to Joe Wylie,

    And that is the connection the NZ Bioethics Council enforced during their 2008 ‘Who Gets Born’ pre-birth testing project. Disability stakeholders were assigned to the same subgroup as religious anti-abortionists.

    Ak • Since May 2008 • 19683 posts Report Reply

  • Sacha, in reply to Joe Wylie,

    I'm really saying it would be a nice problem to have. Not going to happen.

    Ak • Since May 2008 • 19683 posts Report Reply

  • TracyMac,

    Rosemary gives us this scenario:

    The admitting doctor decides that a sixty year old tetraplegic has little quality of life and that dying of pnuemonia is 'par for the course'.
    The doctor chooses not to order any treatment..... "nurse for comfort". ...

    Another doctor comes on duty and, after further examination and discussion, performs an emergency tracheostomy and personally 'negotiates' for a bed in ICU...to give the man a chance of life. ...

    Imagine doctor no.1 standing at the foot of your sickbed clutching the consent form for the 'blue juice'.

    In the original post, we have a handwaving assertion that countries with euthanasia laws aren't perfect, without any references to back that up.

    1. The scenario outlined above happens today. I personally know it does. I'm sure it also happens without discussion and the explicit consent of the affected people. Other than some doctors continuing to play god, you can't legally have an open discussion. Therefore consent is not explicit, even when there is consent, This allows god-doctors to get away with so-called grey areas.

    2. In countries that permit euthanasia (that I'm aware of; certainly the Netherlands and Switzerland), the scenario of the doctor waving the form at the bottom of the hospital bed in an acute situation simply can't happen. I strongly believe, as in those countries, that safeguards of a vigorous and drawn-out process be built in. Yes, multiple counselling sessions, forms, etc etc.

    3. In Switzerland and the Netherlands, every euthanasia death is accompanied by a police and/or coroner investigation. Your god-doctor can't wave his form signed under duress there. This safeguard should be implemented as well. No euthanasia law should be signed without providing this process.

    4. I'm sure there are possible ways to subvert the process in countries with euthanasia laws. But without concrete examples, it's hard to say. I can envisage an intellectually-disabled person being abused into signing a form... Except in the countries I know of, if you're not legally capable of signing a contract, you can't sign that form either.

    5. But I'm sure some people can come up with methods to circumvent legal processes. Is this any different and will it be more prevalent than in places that 'allow' silent withdrawal of life-saving care? I honestly doubt it.

    I want the option. Yes, we have pain and suffering in our lives, but we should also be capable of deciding when enough is enough, for ourselves (no, not for someone else's convenience).

    Yes, I have sat by the bedside of someone whose insides were being eaten by the cancer, and who begged God (yes, a devout Catholic) and us for an end in the few lucid moments between the morphine doses. I have also sat beside the bed of the person getting the same kind of care, and who peacefully went through her dying of several months.

    Would the first woman have taken the euthanasia option if it had been offered? Probably not, actually. But I would have wanted both to have had the option - no, not explicitly counselled for, but the background knowledge it would be legal.

    I have also read about plenty of instances of people in the UK who managed to obtain euthanasia supplies, and who in the end didn't use them, because they found their approach to death easier than they anticipated. No-one sane who supports euthanasia supports any reduction of the quality and scope of palliative care. Personally, I wish it were improved - there seems to be an element of 'postcode lottery' at times.

    To continue with the theme of us discussing our fears, I think it's important to have articles like these that reveal the fears of those who have significant and often on-going medical interventions, and who are the people who will be most vulnerable to mendacious carers and god-doctors.

    It alerts us as to just what we need to see in the way of safeguards to any law that might be proposed. If the safeguards look more like Swiss cheese, such a law should be rejected out of hand.

    We need to affirm the right to always choose for ourselves, and for that choice to be clearly recognised. A big component of my support for this kind of law is that big reduction in the unspoken grey areas we operate under now.

    Canberra, West Island • Since Nov 2006 • 701 posts Report Reply

  • Angela Hart,

    Any reduction in the unspoken grey areas would have to be legislated. At the moment these sit firmly in the "Doctor's professional judgement" category- not usually open for discussion with or challenge by the persons affected.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Hilary Stace,

    Found this relevant recent NZ blog post from Low Visionary Euthanasia: a disability perspective

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Russell Brown,

    Rebecca Macfie's Listener interview with Lecretia Seales on assisted dying is now free to read online.

    Auckland • Since Nov 2006 • 22749 posts Report Reply

  • Sacha, in reply to Russell Brown,

    She is such a great journalist.

    After reading that, I wonder why we would bundle permanently disabled people with terminally ill people?

    Why not legally permit early death only for the latter group? Would remove some of the obvious fishhooks.

    Ak • Since May 2008 • 19683 posts Report Reply

  • steven crawford, in reply to Sacha,

    After reading that, I wonder why we would bundle permanently disabled people with terminally ill people?

    I had no idea. In what whys do we that?

    Atlantis • Since Nov 2006 • 4310 posts Report Reply

  • Sacha, in reply to steven crawford,

    Large-scale stereotypes create strange assumptions because so many people's real lives end up so far apart from the stories. Many of us learned that disability is the same as being sick for a long time. That's because we understand being ill, for a short time.

    Ak • Since May 2008 • 19683 posts Report Reply

  • Martin, in reply to Joe Wylie,

    advocating the privileging of the disabled

    We're disable people Joe, not the "disabled". As the disabled we have been incarcerated in institutions, subject to experimentation, and a whole host of other dehumanising treatments including involuntary euthanasia...

    Palmerston North • Since Mar 2015 • 25 posts Report Reply

  • Joe Wylie, in reply to Martin,

    We’re disable people Joe, not the “disabled”. As the disabled we have been incarcerated in institutions, subject to experimentation, and a whole host of other dehumanising treatments including involuntary euthanasia…

    You poor dears. Having spent a sizeable chunk of my adult life providing care and support for someone with an intellectual disability I really have to confess myself a tad underwhelmed by your brand of scenery-chewing.

    flat earth • Since Jan 2007 • 4591 posts Report Reply

  • Sacha, in reply to Martin,

    disable people

    how does that work, linguistically?

    Ak • Since May 2008 • 19683 posts Report Reply

  • Martin, in reply to Sacha,

    sorry, forgot the d as in "disabled people", Sacha.

    Palmerston North • Since Mar 2015 • 25 posts Report Reply

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