Discrimination of the vilest kind
by Paul Russell
Since the Canadian Supreme Court overturned the protections in law that prohibited both assisted suicide and euthanasia in February 2015, the nation has been in something of a free fall. With Quebec going its own way to create its own permissive regime, which was suspended and then re-instated by the courts, with no consensus yet on the form of any national legislation to give voice to the will of the courts and with stakeholders both pro and con engaging in a tug of war somewhere on the spectrum between protecting vulnerable people, on the one hand, and open season on the other, euthanasia and assisted suicide will continue to be of great public interest for quite some time to come.
It reminded me of the aftermath of the passage of the world’s first euthanasia legislation in the Northern Territory of Australia in 1995. The Rights of the Terminally Ill Bill 1995 (ROTI) was introduced into the NT debating chamber on the 22nd of February that year by the Chief Minister, Marshall Perron and was immediately referred to a committee of inquiry. The final vote in that single chamber parliament was taken on the 25th of May 1995 with the Act finally receiving assent on the 1st of July the following year.
In the interim, the bill was reviewed by the same chamber and amended in March 1996 so that the references to psychiatrists functioned as intended. Three other bills, all designed to repeal ROTI, were defeated at about the same time. In July 1996, shortly after ROTI was proclaimed the NT Supreme Court rejected an appeal by the then head of the AMA in the NT, Christopher Wake and Aboriginal Yolgnu Elder Dr Djiniyini Gondarra, against the law . An appeal to the High Court was planned but never executed given the introduction of the ultimately successful Euthanasia Laws Act in the Federal Parliament in September 1996. In other words, far from settling the matter, the passage of the ROTI Bill, like the Canadian Supreme Court decision, created more heat than light.
The NT’s Rights of The Terminally Ill Act (ROTI) bill passed at second reading by one solitary vote: 13 to 12. It has been recorded in various places that the vote of the Member for Arnhem, Mr Wes Lanhupuy, was the crucial ‘swing vote’. Lanhupuy, the sole Aboriginal MP to support the bill, according to one source, was ‘convinced to vote for the bill on the personal urgings of Marshall Perron.’
I was reminded of all of this recently by an article about Canada’s Northwest Territories and the trouble the Inuit and First Nations people of the region are having coming to terms with both an understanding of the possibility of doctors legally killing someone and the practicalities of the remoteness of the region and lack of access to medical services generally. The parallels between Canada’s Northwest Territories and our own Northern Territory on this issue are striking; the conceptual and practical concerns are also shared by the Maori and the Pacific Peoples.
Some years earlier, in the late 70s as a young bank clerk doing ‘country service’ in the town of Katherine, Northern Territory, I met and spent time with Wes Lanhupuy on a number of occasions. In the 1970s you could still find a hitching rail and a donkey tethered in a vacant block in the main street of town - real frontier territory. As things turned out, I also played basketball with John Ah Kit; member of the Northern Land Council and the man who succeeded Lanhupuy in the NT Parliament in the seat of Arnhem when Lanhupuy died unexpectedly later in 1995.
Ah Kit, also an Aboriginal man from East Arnhem Land, went on to support repeal bills and amendments that would have created a sunset for ROTI, but none were successful. Ah Kit’s position was much more in keeping with traditional Aboriginal law and culture which, I imagine, is not too distant from the Inuit and First Nations people of northwest Canada; nor from the Maori and Pacific peoples to our East.
Jesuit Priest, lawyer and human rights activist, Frank Brennan summed up the attitude of the Northern Territory’s Aboriginal population at that time:
‘Also many Aborigines from remote communities with traditional belief systems and fear of “white fella” medicine will be even more afraid and confused by doctors and hospitals when the foreign medical technology is known to be used not just for sustaining life but also for imposing death. Even the late Wesley Lanhupuy, the one Aboriginal parliamentarian who supported the Perron bill, admitted in debate, “The people at every Aboriginal outstation that I visited told me to ‘give it away’”. If the legislation were passed, he wondered whether “suspicion will be held forever by the family because of the powers given to the doctor in this bill.”’
It is worth remembering, as recalled by Kissane et al, that in 1995:
‘Representing one sixth of the country’s landmass, the Northern Territory has a population of nearly 180,000 people , one quarter of whom are indigenous people. Like the Australian Capital Territory centered on Canberra, the Northern Territory does not have the full legislative powers of Australian States, and its laws are subject to review by the Commonwealth when it can be shown that its Acts are in conflict with the views of the nation. However it does have a parliament of 25 elected members who sit in its capital, the modern city of Darwin – a city rebuilt after its 1974 destruction by tropical cyclone Tracey.’
Reading the Hansard it is evident that Marshall Perron drove the debate on ROTI very hard. Comments abound about a rushed process and not enough consultation etc., but from the distance of the years it is impossible to judge based on those comments alone whether they reflected reality or were perhaps themselves, part of the general argy-bargy and positioning that takes place in these kind of debates.
Perron created a few broadsides himself. In his closing speech at the second reading he said: “The campaign by the AMA and Right to Life groups at least has been dishonest and, whoever told traditional Aboriginals that we would round up the sick people and put them down ought to be ashamed of themselves.”
That last comment is incredibly poignant and historically significant. There is no telling whether Perron’s recollection is verbatim or whether he is summarizing and synthesising a number of anecdotes, but there is no doubt that issues raised by Aboriginal people and concern for Aboriginal peoples, their fears, their laws and culture, remoteness, low life expectancy etc. was a significant part of the initial debate spilling over then into the Federal debate on the Euthanasia Laws Act through 1996 and 1997 and even gaining mentions in subsequent euthanasia debates in other states many years later.
Syd Stirling, MP in the seat adjoining Lanhupuy’s (Nhulunbuy) came to oppose the ROTI bill after consulting his electorate:
‘Some 40% to 50% of my constituents are Aboriginals whom I know to be opposed 100% to the provisions of this bill. Clearly, therefore, the Nhulunbuy electorate would be opposed to the legislation in any case.’
‘I visited and spoke about this bill with Aboriginal people at Elcho Island, Yirrkala and Gunyangara in my electorate. As a member of the committee, I visited Hermannsburg, Yirrkala, Milingimbi and Nguiu. The view of these people was unanimous. They stated very clearly that it was wrong. They said that, when old people knew they were going to die and the land knew they were going to die, they had to come home to die on their own land and to be with their own family. I will quote Wally Wunungmurra from Yirrkala who gave evidence before the committee. He said: “Ethically, culturally and morally, traditionally, it's wrong as far as Aboriginal people are concerned.”
‘That view was expressed in one form or another in every Aboriginal community we visited and by every Aboriginal individual to whom I spoke throughout my electorate.’ (NB: The full Hansard can be found here)
Stirling went on to complain that the lack of understanding evident in local Aboriginal communities was only exacerbated by the shortness of the consultation period (3 months). Lanhupuy himself lamented that two key remote communities were not visited by the committee. Stirling thought that the outcome might have been better had the parliament undertaken an ‘exhaustive educative program’ over perhaps a full year. Two key players were later to observe that it was not a lack of understanding nor the fearmongering that Perron alluded to that caused the offence, but the inability of Aboriginal culture, heritage and law to find a way of dealing with people being made dead legally at the hands of another.
Chips Mackinolty, artist and activist working as an advisor to Aboriginal organisations from the mid-1980s in the Northern Territory was commissioned to undertake an education program amongst Aboriginal communities about the operation of ROTI from June to October 1996. A supporter of euthanasia laws, Mackinolty reported that through 21 community meetings and 900 individual interviews, only 2 Aboriginal people expressed support for the law, and even then, only in private. He concluded that it was adherence to traditional views about life and death and not the influence of the Christian Churches that underpinned such overwhelming opposition.
Mackinolty gave testimony about his work and findings to the Senate Committee looking into the Euthanasia Laws Bill 1996 which eventually overturned the Northern Territory Law (ROTI) in 1997. That testimony was summarized in an article in the Alternative Law Journal in 1997 (Vol 22, No.2, April 1997) where it becomes clear that his approach and objection is not so much about vulnerability as understood in the ‘whitefella’ debate but a deeper problem with Aboriginals avoiding health services altogether out of fear of this strange medicine (and thereby exacerbating the already poor health outcomes for aboriginal people).
Six months earlier and Rev Dr Djiniyini Gondarra OAM sent a ‘Letter Stick’ to the Commonwealth Parliament urging MPs and Senators to support the Federal Euthanasia Laws Bill (overturning ROTI) calling it a ‘sacred responsibility’ to undo the ‘illegal action of sorcery’ by the NT Parliament which, he said, is an offence against Yolngu Customary Law. He talked about the Marrnggitj, or good doctor (healer) and the Galka or doctor-sorcerer adding that their (Aboriginal peoples) personification of good and evil in the doctors explains why the voluntary nature of ROTI made no difference to their thinking. (NB: ‘Letter Stick’ or ‘Dharpa dhawumirr’ is a message form of the Yolngu people of the Arnhem Land)
Gondarra also explained that the Yolngu have a complete system of law that, in its observance, creates the state of Magaya, a state of peace, freedom from hostilities and justice for all. Western law has that aim also, though perhaps in the circumstances Gondarra could have be forgiven for thinking otherwise. But he doesn’t; he cites to his great credit the Constitution of the Commonwealth of Australia and reminds us that Section 51 holds a similar charge to ‘make laws for the peace, order, and good government’ of the Commonwealth.
Mackinolty called it ‘right legislation: wrong jurisdiction’; a clear sign of his internal conflict and a conclusion drawn out of a very clear and deep love and respect for and understanding of Territory Aboriginals. His candour is as refreshing as his priorities are sound. But I can’t help but think that this idea of a ‘state of peace, freedom from hostilities and justice for all’ probably meant more back then in remote Territory camps and settlements than in urban Australia, then and now. There are bonds of kinship that run through blood relationships in Aboriginal culture that are difficult to describe in words. The sense of being in relationship with clan folk and the land has a sense of awe about it that speaks of the sacred and of profound respect. Mackinolty explains:
“I personally support my having access to euthanasia – but not in the Northern Territory. It is arguably the right legislation – but certainly in the wrong jurisdiction. My reasons for this are both simple and complex.
“Whether the legislation is good or bad for us, as whitefellas within our own cosmology, is immaterial. I believe the very existence of the legislation poses an unacceptable risk to the health of Aboriginal Territorians who may delay or refuse to access health care because of fears they have of the legislation. Those fears are deeply embedded in Aboriginal world views. Put simply, it has the potential to lead to premature deaths amongst a group of people whose life expectancy is already unacceptably low.
“Due to complex ways in which Aboriginal belief, social and cultural systems do not ‘match’ those of non-Aboriginal Australia, external reassurances about the ‘voluntary’ nature of the legislation will be unlikely to lessen the very genuine cultural misgivings and fears Aboriginal people have about the existence of the Act…and the evidence to date is that those world views have already persisted for a substantial period despite long-term contact with non-Aboriginal world views. This persistence of such world views is not amenable to ‘education programs’ in general…no matter how much support and good will is afforded by such a program. People, no matter what their cultural background, do not ‘unlearn’ their world view so easily.”
“I do believe that there are very real risks to the health of Aboriginal people, by virtue of the existence of legislation: it’s what people believe about the legislation, not what may actually be contained within it. Frankly, I do not think that Aboriginal people need another potential ‘agency’, let alone cause of death.”
There are perhaps a few ways one can look at this unique slice of Australian history. I am tempted towards the conclusion that, had Perrin conducted a longer consultation with Aboriginal Territorians, the Rights of the Terminally Ill Bill would not have become law. This is not to criticise Perrin, often these things can only be fathomed in the rear-view mirror. What such an outcome may have had later on – given that without ROTI the Federal Parliament would likely not have removed the powers to determine such matters from the three territories – is guesswork. I would have thought, however, that the Australian Capital Territory may well have raised a bill and that it would likely have passed.
However I think that there are far more important questions to consider here. Mackinolty, it seems, would have removed the NT euthanasia law based on his observations about its effect on the Aboriginal population alone. From his evidence he was clearly representing the vast majority of Territory Aboriginals and his testimony was beyond reproach. His work was a significant influence in the Federal parliamentary debate that eventually nullified ROTI, but it was not the only consideration.
However, it is legitimate to ask: is it sufficient that a momentous public policy decision such as euthanasia can be scotched by reference to and under the influence of the deeply held concerns of a minority? After all, in recent history we have willingly halted or shunned developments found to pose a threat to the environment in some way? Surely the precautionary principle has far more potency and application to human life?
In terms of euthanasia we might traditionally think of a ‘minority’ as being the same or similar to the generic term ‘vulnerable people’. I am not sure that we should conflate the two in this instance. On the basis of what Mackinolty calls ‘Aboriginal world views’ I would suggest that the most proximate community concern would be for people living with disability. I base this solely on the fact that people living with disability will have a developed world view and life experience whereas vulnerability can be episodic, can affect us all and has no community nexus. (Note: I am not comparing Aboriginal issues or communities to disability issues or communities; I am just trying to find another lens through which to view the question.)
Or, is it acceptable that, acknowledging these concerns, we still go ahead and give the green light to euthanasia? Had the Federal Parliament ignored the concerns raised by Mackinolty it would be hard to argue that it had not thereby behaved in a patronising manner towards Aboriginal Territorians. Again, according to Mackinolty, there was no way that he could see of assuaging their deeply held concerns: “People, no matter what their cultural background, do not ‘unlearn’ their world view so easily.” In other words, there was no ‘quick fix’ that legislators could adopt to make the problems he raised go away.
Something similar can be found to be held amongst people living with disability. Not a homogeneous unit by any means yet still we find deeply held concerns about euthanasia and assisted suicide based on lived experience of being treated as though ‘better off dead’ by others and, in particular, by some in the medical community. Such experiences provide a backdrop or ‘worldview’ that is not simply ‘unlearned’ by patronising assurances to the contrary; especially when the discrimination and lack of meaningful life choices continues to be the experience.
And yet, that is precisely what we saw on display last year in the ABC Q and A program on euthanasia in comments made by journalist Andrew Denton in response to a question on disability from audience member and disability advocate, Joan Hume. After misapplying the long held concerns about the effect of euthanasia and assisted suicide on the vulnerable, infirmed, disabled etc., Denton talks at Joan and says: ‘Your fears are very real, but that does not make them a reality.’ He repeated that very phrase recently on national radio.
Would Denton have had the temerity to front Chips Mackinolty or Dr Gondarra in the late 1990s with a similar quip in response to their claims? I seriously doubt it. On the Q & A program, Dr Karen Hitchcock responded to Joan Hume’s question in total agreement. Hitchcock speaks from vast experience and common sense but, I guess, that does not make her concerns a compelling reality either.
It is easy enough to dismiss other ‘realities’ if we can construct a framework that denies or extinguishes the potency of any argument arising from those realities. No-one to my knowledge anywhere in the world has ever said that the concerns for vulnerable people or for people with disabilities, if euthanasia were ever to become law, is based on abuses reported to peak disability and elder care bodies in places like Oregon, Belgium and The Netherlands. Denton claimed that this is what was represented at HOPE’s Adelaide conference last year. That is not true.
Denton made an assumption that this was the basis of our argument. His lack of practical experience in the field let him down. The vulnerability argument predates legal euthanasia and assisted suicide. It has been found to be the most significant blockage to euthanasia and assisted suicide in reports and parliamentary inquiries across the globe for decades.
Risks to vulnerable people remain the focus of every debate which is testament to the fact that there are both risks and vulnerable people. Just because Denton visited the ‘brave-new-world’ and returns with a Utopian vision of bliss does not change the reality. Joan’s fears arise from her experiences as a person living with a disability here in Australia; they are real and it would be that reality right here at home that would come into play if euthanasia were ever law and not some patronising assurances from a long way away.
Drawing us back to reflection on the work of Chips Mackinolty. I probably have little in common with his world but, from my few years living in the Territory, perhaps more than many. To me, he is an Australian legend because he stood up for what was right and for the many voiceless Territorians even though his own world view painted a very different picture and pulled him in a different direction.
I was tempted to write and readers might be tempted to the thought that Mackinolty stood up ‘for the underdog’. That’s a great Aussie reference, but it doesn’t fit here. Why? Because there is a real risk that we look at the principle of vulnerability, of genuine and deeply held fears and concerns from a ‘lowest common denominator’ perspective. In other words, there’s an implied condescension to ‘the little folk’ or whatever other diminution that comes to mind. This only re-enforces the idea of people being a ‘burden’ on society. Human rights may well be partly about a debt owed one-to-another because of our common humanity but it is also about inherent dignity that, at its best, seeks to elevate the other. Deficit thinking is not the right approach and I don’t believe that Mackinolty would have characterised his opus magnum that way.
I put it to you that by listening to Mackinolty and taking the concerns he raised on behalf of Territory Aboriginals that our lawmakers adopted a ‘highest common factor’ approach; the precise opposite of the above. In other words, they were careful to make space for a voiceless and challenged community to share its concerns, not because they were inconvenient or different but because they are part of our human story that cannot fail to provide insight and benefit to the whole nation. When Gondarra talks about Magaya: a state of peace, freedom from hostilities and justice for all as a consequence of good law, surely we should hear that wisdom!
Kevin McCloud, the presenter of the TV series, Grand Designs, once steered viewers through the design and development of a new home being built by a young British veteran of the Afghanistan conflict who had lost limbs in that conflict. With many design features built specifically for his access needs, McCloud commented to the effect that building design for people with physical disabilities actually benefits everyone – a ‘highest common factor’. I’m arguing that listening well to those deeply held ‘world view’ concerns and accepting that to ignore them is to risk damage to society, we raise a benefit. We actively elevate and esteem those that we listen to. We enhance our understanding by applying empathy. We destroy barriers through gaining understanding. We draw closer together.
The alternative is hard to comprehend. I don’t know what Joan Hume felt that night in the ABC studios when her perspective was diminished and virtually dismissed by Denton. I don’t doubt that it wasn’t the first time. I don’t know what Dr Karen Hitchcock felt when Denton talked over her on Q & A and treated her vast experience with little more than lip service on radio recently. What I do know is that if we ignore the world view and life experience of those who would say ‘no’ to euthanasia or assisted suicide because of specific, recognisable and legitimate concerns, based upon years of lived experience, then we sow division. We endorse the supposed ‘right’ of an elite few at the clear expense and alienation of others and we entrench discrimination of the vilest kind.
How is that ever good for a society?