Erik,
indeed Jennifer should. Like Christopher someone who left us much too early.
Cheers
Gregor
Dr. Gregor Wolbring
Assistant Professor
University of Calgary
Phone 1-403-210-7083
webpage: http://www.bioethicsanddisability.org
On 03/11/2010 9:44 PM, erik leipoldt wrote:
> Is it a perhaps a good time to consider an Australian bioethics institute based on disability perspective? It needs a focus which is difficult to achieve within disability organisations themselves and could be a valuable resource for them, as for broader change.
>
> I am aware of only a bit of past Australian disability advocacy on euthanasia, and other bioethical issues, not present. The very articulate late Jennifer Fitzgerald, in a Queensland Advocacy Inc.bioethics-focused part of its disability advocacy iwas a major contributor, though probably not widely known/remembered in the present Australian disability movement. She should be.
>
> Some of her work here:
> http://www.metafuture.org/articlesbycolleagues/JenniferFitzgerald/Bioethics,%20Disability%20and%20Death.htm
> Excerpt:
> There are many perspectives missing from the euthanasia debate - women, indigenous people, ethnic minorities, the poor, people of colour, the Third World, and the perspective of people with disability. These are the perspectives of those who have been constructed as 'Other', as falling outside the 'paradigm of humanity'. When the perspectives of even those marginalized groups who are articulate and more visible within society are excluded from the euthanasia debate, it is not surprising that the perspective of people with disability has been absent, for the culture of negative silence has been strong amongst people with disability.
>
> For people with disability, their history is largely a history of negative silence. The lives of people with disability have not only been constructed as 'Other', but frequently as 'the Other' of 'the Other'. People with disability are marginalized even by those who are themselves marginalized.
>
>
> http://books.google.com/books?id=96M-fS8qN6gC&pg=PA267&lpg=PA267&dq=jennifer+fitzgerald+euthanasia&source=bl&ots=QeA21Mbgl9&sig=LUxDqG-p-IaGFBC7ZNoRfKDazsQ&hl=en&ei=vx7STMbDJorEvQP47bX1Dg&sa=X&oi=book_result&ct=result&resnum=4&ved=0CCYQ6AEwAw#v=onepage&q=jennifer%20fitzgerald%20euthanasia&f=false
> It's a 'Google book', meaning it has assumed the right to put it on the web. Out of print it seems but available to buy here http://www.abebooks.co.uk/servlet/SearchResults?isbn=9789041110862&afn_sr=CJ&cm_ite=cj&cm_ven=aff.
>
> A great compilation of reflections here: http://www.qai.org.au/index.php?option=com_content&view=article&id=41&Itemid=50
>
> A thoughtful philosphical piece arguing for deep transformational change: http://www.futuresevocative.com/Articles/Marcus/critical-spirituality.html
>
> A Jennifer Fitzgerald memorial Lecture here (Leipoldt, 2006)
> http://www.jfs.tku.edu.tw/10.3.15.pdf
>
> The late Christopher Newell is another Australian voice on the subject:
>
> Parsons& Newell. (1996). Managing mortality: Euthanasia on trial. Villamanta Publishing service.
>
> Newell (1998). Euthanasia, death and dying. An Anglican resource. The Social Responsibil8ities Commission. The Anglican Church of Australia
>
> Newell,C. (1996). Critical reflections on euthanasia and peopole with disabilities. The Australian Quarterly.
> http://www.jstor.org/pss/20634738
>
> On ABC radio
> http://www.abc.net.au/worldtoday/stories/s237007.htm
>
> A Newell biliography here: http://media-dis-n-dat.blogspot.com/2008/06/australia-loses-top-bioethicist.html
>
> Jeff Heath, a disability advocate, and Australian Democrats candidate, who started and edited Link Magazine, was an opponent of euthanasia. He wrote two editorials on the subject in Link I believe, but cannot locate.
>
> Cheers
>
> Erik Leipoldt
> http://www.onlineopinion.com.au/view.asp?article=10613
>
> http://www.amazon.com/Euthanasia-Disability-Perspective-Erik-Leipoldt/dp/3639247159/ref=sr_1_1?ie=UTF8&s=books&qid=1274750443&sr=1-1
>
> ----- Original Message -----
> From: Frank Hall-Bentick
> To: OZAdvocacy ; AFDO Members Elist ; [log in to unmask] ; ANSWD Australasian Students Network ; IDA CRPD Forum ; UK Disability-Research
> Sent: Thursday, November 04, 2010 8:20 AM
> Subject: [OZAdvocacy] Australian Parliament debates Euthanasia
>
>
>
> Recently an Australian Disabled Peoples Organisation was asked their views
> on Euthanasia by a Senator to contribute to Parlimentary debate.
>
> This of course raises many issues.
>
> One of which is, can initial safeguards protect people with disabilities
> from the negative perception of some in society that the lives of people
> with disabilities are not worth living.
>
> Frank
>
> ----- Original Message -----
> From: samconnorwa
> To: [log in to unmask]
> Sent: Thursday, November 04, 2010 10:12 AM
> Subject: Pdca Re: euthanasia for people with quadriplegia
>
> This is such an important debate.
>
> Christian's dad committed suicide in 1996. Christian (Perth West Australia)
> also tried to kill himself in 1990 (prior to acquiring his disability) - he
> tried to drown himself in strong surf at Cottesloe Beach after taking a pile
> of painkillers. His mother saved him. Christian had been battling depression
> for some time after a previous workplace injury and was later glad that his
> suicide attempt was unsuccessful.
>
> I have no doubt that Christian thought his position (as a person with
> disability who also had severe depression) was untenable. I've lived with a
> man with chronic depression for over twenty years. But this debate is not
> about euthanasia; it is a debate about the right to commit suicide.
>
> Christian was not asking to be euthanased. He was asking for feeding to be
> withheld so that he would starve to death as a conscious choice. The act,
> therefore, would be his alone.
>
> Suicide, the intentional taking of one's own life, is no longer an offence
> in any Australian jurisdiction.
>
> Attempted suicide is now an offence only in the Northern Territory. However
> it is an offence in all Australian jurisdictions to assist or encourage
> another to commit or attempt to commit suicide.
>
> If politicians are going to debate the legality of suicide, I have no
> problem with that. But euthanasia is another whole ball game. In Holland,
> they allow children as young as 12 to be euthanased, with parental consent.
>
> In Holland, euthanasia must be performed with "due care," in response to a
> "voluntary and well-considered" request from a patient who sees "no other
> reasonable solution" to "lasting and unbearable" suffering. The patient's
> request may have been made years earlier, before incurring an illness or
> injury. There is no requirement that the patient be terminally ill.
>
> Read this article about people with disability in Holland and how they feel
> about euthanasia law, and what has become accepted practice. Its scary.
> http://www.disabilityworld.org/05-06_01/gov/euthanasia.shtml
>
> I think disability groups have a *responsibility* to consult with their
> members on this issue and to bring their views to the forefront. Politicians
> are discussing the possible fates of people with disability without
> discussion with the people involved. It is an absolute travesty that Senator
> Boyce's office would ring a disability organisation on the day to get a 'bit
> of an idea' prior to discussing such an important issue.
>
> Cheers
> Samantha
>
> --- In [log in to unmask], "erik leipoldt"<eleipoldt@...> wrote:
> >
> > Earlier I referred to Mark Parnell MP who introduced his euthanasia Bill
> > in the South Australian Parliament recently. He used Christian Rossiter's
> > case in WA, a man with quadriplegia, in justifying his Bill in order to
> > address such "suffering."
> >
> >
> >
> > Subsequently, Mr Parnell has now amended the record by saying he was wrong
> > about Mr Rossiter being terminally ill - he was not. He did, again though
> > refer to such experience of 'suffering' from quadriplegia, AND as being
> > eligible for euthanasia under his Bill.
> >
> >
> >
> > "The Hon. M. PARNELL: Yesterday, in speaking to the Consent to Medical
> > Treatment and Palliative Care (End of Life Arrangements) Amendment Bill, I
> > referred to various recent cases that highlighted the need for voluntary
> > euthanasia law reform. In my speech, I highlighted an unnamed case from
> > Western Australia and said that the person involved was terminally ill.
> > That was incorrect. I would now like to correct the record and acknowledge
> > that the Western Australian case involved a Mr Christian Rossiter, who was
> > not terminally ill but was suffering from severe quadriplegia and had
> > asked for his feeding tube to be removed from his stomach because he no
> > longer wished to live.
> >
> > The evidence before the court was that he was not dying from his condition
> > and he could live for many more years. However, there was no doubt about
> > his ability to understand his condition and to make reasoned choices on
> > his own behalf. He described his life as a 'living hell'. Mr Rossiter died
> > on 21 September 2009 from a chest infection, 5½ weeks after the Western
> > Australian Supreme Court confirmed his right to refuse food and medicine.
> >
> > On the evidence available about Mr Rossiter's case, if he were a South
> > Australian resident, he would have not have qualified as a person able to
> > request voluntary euthanasia due to being in the terminal phase of a
> > terminal illness. However, it is likely that he would have qualified under
> > the second criterion in the bill, namely, as a person 'who has an illness,
> > injury or other medical condition (other than a mental illness within the
> > meaning of the Mental Health Act 2009) that irreversibly impairs the
> > person's quality of life so that life has become intolerable to that
> > person and who desires to end their suffering by means of voluntary
> > euthanasia administered in accordance with the Act'."
> >
> > On such grounds Mr Parnell is on a par with shockjock Howard Sattler, who,
> > at the time advocated Mr Rossiter ought to be able to have euthanasia,
> > because:
> >
> > Since the former extreme sportsman was rendered quadriplegic he has been
> > forced to endure immobility, embarrassment and perpetual pain.He has no
> > movement, relies on nursing home staff to clean up after his bodily
> > functions and is continually dosed up on painkillers.In his own words life
> > is a living hell.
> > (http://blogs.watoday.com.au/madashell/2009/08/a_cruel_and_unu.html )
> >
> > It is crystal-clear then that euthanasia is an issue that, despite the way
> > opinion poll questions are usually asked (involving a condition of
> > terminal illness), is one based of a view of disability as suffering, and
> > therefore, there is no real safeguard against its use for people with
> > disabilities. That is so, in my view, even if Mr Parnell would remove his
> > second criterion in the Bill, as his intentions, short- or long-term are
> > clear and it will not stop here. The defeated WA euthanasia Bill, likewise
> > left the gates wide open to any sort of "suffering" as being eligible.
> >
> > In my research people with quadriplegia overwhelmingly said they would not
> > want euthanasia for themselves for reason of their disability but they
> > thought it was a personal choice. Do you think you should be able to apply
> > for euthanasia because your disability makes your life too hard? For how
> > long would a great public body of opinion of life with disability as
> > unbearable suffering be held back before a choice became a sense of
> > obligation?
> >
> > Will there be a disability voice this time?
> >
> > Erik Leipoldt
> >
> > http://www.amazon.com/Euthanasia-Disability-Perspective-Erik-Leipoldt/dp/3639247159/ref=sr_1_1?ie=UTF8&s=books&qid=1274750443&sr=1-1
> >
> > http://www.onlineopinion.com.au/view.asp?article=10613
> >
> >
> >
> > A policy proposal for disability organisations, disability movement, or
> > individuals.
> >
> > While we believe that progress has been made with regard to the social
> > position of people with disabilities in Australia over the last hundred
> > years;
> >
> > Mindful of the continuing low social status that the Australian society
> > accords disability and people disabilities, involving exclusion from
> > society in many areas of life, including the existence of hate crimes
> > towards people with disabilities;
> >
> > Mindful also of a prevalent public cost-benefit attitude to providing the
> > best care and support to people with disabilities;
> >
> > Mindful of our rich country's insufficient care and support to people with
> > disabilities;
> >
> > Mindful of the medical profession's prevalent view of disability as a
> > medical condition, and therefore equated with suffering;
> >
> > While knowing that it is also the medical profession that will play a
> > crucial role in any future euthanasia legislation, including who may use
> > it;
> >
> > Knowing that elsewhere, for example The Netherlands, euthanasia
> > legislation has over time resulted in new-borns with disability receiving
> > euthanasia (including spina bifida), and of 12- (with parental consent)
> > and 16-year olds (without required parental consent), while there is a
> > current strong public push in that country for a right to have
> > medically-assisted suicide over age 70 if one feels one's life is
> > 'complete';
> >
> > Believing that generally people with disabilities are insufficiently heard
> > as to their needs and wishes within many health, care and support
> > services;
> >
> > Fearing that for some vulnerable people a 'right' to die may in practice
> > translate as feeling an obligation to die;
> >
> > Accepting that good quality palliative care is a socially responsible and
> > effective approach towards suffering at the end of life while the coverage
> > of palliative care in Australia is grossly insufficient;
> >
> > Asserting that the onus is on those seeking to change the status quo with
> > regard to euthanasia to show beyond doubt how their proposed legal
> > euthanasia avenues towards suffering pose no threat at all to vulnerable
> > people (with disabilities) for the foreseeable future;
> >
> > While we believe that personal choice and human rights are important goods
> > for anybody, we point out that in the life experience of people with
> > disabilities these are sadly wanting. This makes us vulnerable to some of
> > the same parties (medical profession, services) that deny us such rights
> > and choices in many areas of life but ironically not with regard to a
> > 'right to die';
> >
> > We not want to leave it to others to use examples of what is essential to
> > disability experience of good life, ie acceptance of dependence on others,
> > 'loss of dignity' in having personal care tasks, and so on, to be cast as
> > reasons for legal euthanasia.
> >
> > The disability movement/organisation/name therefore opposes any legal
> > euthanasia at this time, until such time as:
> >
> > It sees evidence of safeguards that guarantee against abuse of such
> > legislation involving highly vulnerable people, such as many people with
> > disabilities are;
> >
> > The best palliative care is available to all Australians, including people
> > with disabilities, and has been allowed to exist in such a state for a
> > considerable time in order for its merits to be fully understood by the
> > public;
> >
> > All people with disabilities possess in a real and meaningful way all
> > those rights and choices that help us live 'ordinary lives' and be
> > protected from discrimination, isolation, neglect and more, circumstances
> > which often construe real suffering;
> >
> > A culture of real, sufficient and meaningful support, and a welcoming
> > inclusion of people with disabilities in our communities is a reality.
> >
> >
> >
> >
>
>
>
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