A report from a Victorian parliamentary committee is expected to recommend legislative changes that would permit assisted dying. The stage for such change has already been set through a series of recent media articles and public events.
Earlier this year, The Age reported the case of 55-year-old Anthony Virgona, who died after declining to undertake the regular dialysis treatment that had been keeping him alive. After 20 years of living with multiple sclerosis, 12 years of residential care, and three years of kidney disease, he’d had enough. Before his death, he told The Age that he believed that patients like him should be able to “make a choice to go peacefully” by taking a pill, rather than by waiting to die from renal failure after the withdrawal of treatment.
Of course, he was not alone in this belief. Earlier this year, The Age ran a lengthy story about octogenarian Peter and Patricia Shaw’s double suicide, undertaken in order to avoid what they considered to be the unbearable humiliations of old age. And late last year, broadcaster Andrew Denton embarked on a campaign in favour of legalised euthanasia in a series of events including a public lecture, podcasts and an episode of Q&A.
Both Denton’s op-eds and the report about the Shaws’ suicides have been widely circulated on social media, where they received a sympathetic response from many who fulminated about right-wing religious politicians refusing to allow patients to choose the time and manner of their deaths. And it’s an issue that is gaining momentum. The legalisation of euthanasia is Greens policy and is widely supported by many who would consider themselves to be broadly left-wing and/or feminist. Yet I would argue that this constituency ought to be very wary of the attitudes and assumptions underlying legalised euthanasia.
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I did not give the issue of euthanasia any serious consideration until after my diagnosis of multiple sclerosis. Like so many others, I considered that opposition to euthanasia was a cause for right-wing social conservatives, not for leftie feminists like me. However, as the disease becomes more active, I began to see the ways in which the campaign to legalise euthanasia devalues the lives of people living with a disability and/or chronic disease.
Those who support the legalisation of euthanasia stress that it would be voluntary and that since they would not impose their beliefs about euthanasia upon me, I am not entitled to impose my beliefs upon them. However, this claim is based on an extremely reductive understanding of the context in which such decisions would be made: we are not all equal players in the healthcare market. Euthanasia advocates loudly proclaim their commitment to maintaining their independence, even at the expense of their lives.
But “independence” of the type under discussion is perhaps better described as privilege. For Andrew Denton, the fear that legalised euthanasia would undermine the welfare of people living with a disability is a cynical red herring. It would be “voluntary”, after all; disabled people need not fear that we would be coerced into taking our lives. However, this reads to me like a wilful misunderstanding of our concerns. I wish with all my heart that the late, great, disability activist and euthanasia opponent Stella Young were still here to give him the good hard kick up the arse that he so royally deserves for his patronising exclusion of disabled voices.
I have no trouble envisioning scenarios in which I might prefer death to another round of excruciating physical pain. I support the right of patients to refuse treatment (especially in cases where the treatment is more painful than the disease that it is supposed to treat), as well as their (our) right to be provided with sufficient medication to relieve pain, even when it might shorten their/our lives. But these measures occupy an entirely different moral space to euthanasia. Those of us who live close to the margins know how often the choices provided to us are nothing more than Hobson’s choice.
Studies have found that support for euthanasia is significantly lower among African-Americans than among the general population. Some analysts speculate that this is due to higher levels of religiosity, and this may well play a role. But in a society that is still coming to terms with the idea that “Black Lives Matter”, it is not paranoid for African-Americans to be concerned about the implications of medically assisted suicide. The Victorian parliamentary inquiry has not had the time or the resources to adequately assess the impact of legalised euthanasia upon the most vulnerable members of Australian society.
I would like to have met Anthony Virgona. Although it is important to emphasise that multiple sclerosis has taken a far less serious toll on me that it did on him, some aspects of his online journal are hauntingly familiar. The journal is clumsily written, but it is also lively and engaging. In its early stages, he says he wants it to provide hope to other people coming to terms with a diagnosis of multiple sclerosis. He also chronicles episodes of suicidal depression in the early stages of the disease, during which medical staff did not leave him unsupervised for fear that he might “do something silly”.
Some euthanasia advocates (most obviously Philip Nitschke) believe that patients like Virgona ought to be provided with the means to “do something silly”, even at that early stage of the disease. Others, of course, believe that euthanasia should only be an option when death is already imminent. Virgona himself got through those early suicidal periods to become an advocate and mentor for other patients living with multiple sclerosis. For me, his life ended as and when it should have done — when the only means of prolonging it would have been to force him to continue an intrusive and grueling treatment against his will.