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Thursday, 28 October 2010
Page: 1088

Senator BOYCE (4:33 PM) —I would like to congratulate both Senator Scullion and Senate Crossin, whose speeches I have had the pleasure of hearing, on their strong advocacy for states’ rights.

Senator Stephens —Territory rights.

Senator BOYCE —Territory rights, as Senator Stephens quite rightly corrects me. This is about territories having the same rights as others, although I was somewhat startled to hear Senator Crossin’s suggestion that there should not be a conscience vote on this issue. Given that, as I understand it, it was a decision of the Labor Party caucus to have a conscience vote, we seem to have some strange opposition going on in all sorts of directions.

As both Senator Scullion and Senator Crossin have pointed out, the Restoring Territory Rights (Voluntary Euthanasia Legislation) Bill 2010 is about territory rights. It is about the right of the Northern Territory to pass the same sorts of laws that states have the right to pass. However, I would suggest that, if this bill were called the Restoring Territory Rights (Government Charges) Bill 2010 or the Restoring Territory Rights (Possible Land Title Issues) Bill 2010, it would not have been presented by the Greens. The fact that it is about such a controversial, media worthy topic is the whole reason that this bill has been brought to this place by the Greens. The intention is to cause debate not just about territory rights, which I think everybody in this place would agree should be upheld in the same way as states’ rights, but to cause debate on the topic of euthanasia itself.

So I want to focus a little on the subject of euthanasia, or what I shall refer to as often as possible throughout my speech as assisted suicide. The definitions of euthanasia, voluntary euthanasia and involuntary euthanasia become wider and stranger as we go, so I think assisted suicide is a better term to use when talking about this subject. I would like to quote from an article by a UK disability group founder and advocate, Alison Davis, called ‘No less human: voluntary euthanasia and disability. A personal story’:

The terms denoting the killing of human beings, for their own supposed benefit or that of others, have changed out of all recognition since the ancient Greeks coined the term ‘euthanasia’ meaning ‘a good death.’ Progressively this became some-thing of a taboo term, and ‘assisted suicide’ or ‘assisted dying’ have become the preferred term. Usually now the term—

and she is speaking of the UK—

‘dying with dignity’ is used to mean deliberate killing, as in the UK where the ‘Voluntary Euthanasia Society has recently changed its name to ‘Dignity in Dying,’ suggesting that only a procured death is ‘dignified.’

Ms Davis goes on to say:

… I know from my own experience that what is needed is not to be abandoned or presumed to be ‘better off dead,’ or to have one’s worst fears of being ‘burdensome’ confirmed, but rather to be surrounded by those who care.

She puts an argument, which I am going to go through in terms of a number of disability advocacies, about the fact that euthanasia in many cases is a disguise for ageism and ableism—that is, discrimination against the aged and discrimination against those with a disability. She says:

What hasn’t changed is the sort of people regarded as having a right to have their lives ended prematurely. Terminally ill people always seem to qualify for what I’ll call, for the sake of clarity, “euthanasia” or “assisted suicide.” Incurably or profoundly disabled people as well as elderly people also often qualify for having their lives deemed “not worth living” whether or not they have asked, or can ask, to be killed.

This of course raises issues about people with intellectual disabilities, disorders or conditions that might prevent them from having a view or an understanding of the effect of assisted suicide.

Interestingly enough, the argument has been put by Physical Disability Australia and other groups that, in fact, the United Nations Convention on the Rights of Persons with Disabilities mitigates against legalising euthanasia in Australia. They point out that Australia was one of the first countries to ratify the United Nations Convention on the Rights of Persons with Disabilities. Article 10 deals with the right to life. It says:

States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis ...

The contention of many disability groups would be that this is impossible to achieve. Given the current attitudes towards older people and people with disabilities, it is impossible to achieve that equal basis of quality of life, effective enjoyment of life, for people with disabilities. In fact, it is the beginning of a slippery slope that we begin to march down if euthanasia were legalised.

The 1993 House of Lords select committee decision—which I think has been mentioned already—in what was referred to as the Bland case, stated:

We do not think it is possible to set secure limits on voluntary euthanasia. It would be impossible to frame safeguards against non-voluntary euthanasia if voluntary euthanasia were to be legalised. It would be next to impossible to ensure that all acts of euthanasia were truly voluntary, and that any liberalisation of the law was not abused. Moreover, to create an exception to the general prohibition of intentional killing would inevitably open the way to its further erosion, whether by design, by inadvertence, or by the human tendency to test the limits of any regulation. These dangers are such that we believe that any decriminalisation of voluntary euthanasia would give rise to more and more grave problems than those it sought to address.

This was referred to by what was the Human Rights and Equal Opportunity Commission in Australia in December 1996. They called it the ‘sophisticated version’ of the ‘slippery slope argument’ but point out that it must be taken seriously because the question is: is it possible in practice, with the best of intentions, to conceive a legislative scheme which is immunised against potential abuses? My contention, and the contention that I am raising today in support of the many disability rights advocates, is that it is not possible to do that.

I turn to some information that comes from an outstanding Canadian bioethicist with a disability in an article headed ‘Why disability rights movements do not support euthanasia: safeguards broken beyond repair’. He was very involved in moves for legislative changes in Canada. He pointed out that a Gallup poll in Canada showed that 75 per cent of Canadians were in favour of euthanasia where someone had a terminal illness; only 17 per cent were against. Fifty-seven per cent were in favour of euthanasia where people had an incurable illness and 32 per cent were opposed.

He was making the point that we slide from ‘terminal’, which is probably the understanding that most people would have of what euthanasia is about, to ‘incurable’. Where do we slide to from there? As I pointed out, with the embedded ableism and ageism already in our society, the tendency to keep moving the goalposts until you have ‘involuntary euthanasia’, not ‘voluntary euthanasia’, legal or illegal, would be massive. Professor Wolbring said:

As the above quotes show—

he is talking about the Gallup poll in Canada—

the term right to die is not limited to the term terminal anymore. Often the term incurable is used. Now what does that mean for the disability rights movement? With the change of one word, we include now everyone with a condition not viewed as mainstream. Even I, a thalidomide, am incurable! Very likely I will not wake up one morning with my legs being there—

that is, he will not be cured—

An Alzheimer person is incurable, as are people who are schizophrenic, a manic depressive person, HIV positive people—

they are all incurable—

 Public perceptions toward these characteristics—

as we all know—

vary. Certain characteristics are so stigmatized that the public views those people with these characteristics as being better off dead; that is, the quality of life is so low that no life at all is a preferable option.

The shift from terminal to incurable takes away the first safeguard against abuse—

of these laws. Further, in the same area, an alarming statistic is quoted by Dr Wolbring. He points out:

The British Medical Journal reported on 29 October 1994 that, “People in Britain are more likely to request euthanasia to avoid being a burden on their relatives than because they are in pain.”

This is even more so the case since the numbers have gone up. The push in both areas for the elderly and those with disabilities to stop being a burden is, in my view and the view of many in the disability rights area, an unintended but absolutely guaranteed consequence of our attempts to develop law in the area of voluntary euthanasia.

There is also some very good Australian writings in this area, and I would like to quote extensively from the writings of the late Associate Professor Christopher Newell AM, an amazing Tasmanian man who died in 2008. He was in a wheelchair and suffered throughout most of his life a number of illnesses and a lot of pain because of his disability. Professor Newell argues in an article called ‘Critical reflections on euthanasia and people with disability’:

Whatever one’s personal views—

the issues involved in—

so-called euthanasia cannot safely be legalised or even decriminalised.

That is his view, and it is a view shared very widely within the disability community.

Professor Newell was, if nothing else, an extremely persuasive and articulate advocate for the cause of disability rights. In fact, he was a well-known and famous educator. One of his books was called Better off Dead than Disabled, a sardonic reflection on the quality of education for children with disabilities, in which he goes through the many arguments that have been made on the topic of euthanasia. I must add here that everyone that I am aware of in this area has enormous sympathy for people who are suffering, and I hope to talk soon about what I see as the issues in that area.

Professor Newell, in his usual clear way, continues later in the article mentioned earlier:

… we live in a society which has oppressed people with disability via its very structures and norms, and where the dominant knowledge is that it is ‘better to be dead than disabled’. Indeed, unless one is presented with a positive social model which suggests that people with disabilities can achieve, and which challenges dominant stereotypes of the quality of life for people with disabilities, then inevitably it is seen as reasonable that people should either be allowed to end their lives, or have their lives ended for them, voluntarily or involuntary.

The reason I am speaking today is that the voices of disability advocates in this area are often not heard. Along with Professor Newell, I would argue that we must recognise that the calls for legalising medical killing for people who are considered terminally ill ignore the subjective nature of the judgement about the quality of life of people with terminal illness. Someone who is on a respirator, for instance, could be considered terminally ill; if you take the respirator away, they will die. There are also many practical problems, for people with diseases, that could kill them. Dr Newell makes the point that, under what was then the Northern Territory legislation—the very short-lived legislation—insulin-dependent diabetes could have been considered ‘terminal’ because without treatment it could cause death. That definition could have been applied.

It could be called fanciful or exaggerated to suggest that these are problems that would develop—I think that would probably be one of the last areas where we would see anything proposed—but it indicates the huge risk of unintended consequences of laws that do not respect the rights of the vulnerable in our community, the rights of people who are not seen to have the same status or eligibility for rights as the general population. Dr Newell quotes from research from the Netherlands:

… there has been a significant incidence of unrequested medical killing of aged people and younger people with disability—

in the Netherlands since the legislation there was introduced. This is research undertaken by disability advocates in Holland that has looked at how this has happened.

 It is a creeping change that just comes on. Dr Newell, again in his very articulate, clear prose points out that he can understand that people would want to undertake euthanasia. It is a cry for help and an opening up of a dialogue, in his view—even to attempt suicide. He says:

It is a very human cry of despair and one which I have experienced myself in requesting death.

But he goes on to point out that it is as much about power relations, social constructions, and ableist and ageist values.

I would also like to look also at the work being done by Palliative Care Australia who are meeting in Canberra today and, this very day, revising their position statement on euthanasia. They make the point that in fact requests to die, euthanasia, are in many ways simply a result of a failure to provide good and adequate palliative care. That is certainly something that we must change and must work on to improve.