Disability and Assisted Suicide: A Lethal Combination?
At the completion of the Rio Paralympics in 2016, Marieke Vervoort, a Belgian silver medallist in the 400 metres, and a winner of silver and gold medals at the London Olympics announced to a BBC interviewer that she had completed the requirements to receive medical assistance to commit suicide at a future time of her choosing.
Marieke explained that, notwithstanding her satisfaction at winning the medal: there is also another side to the medal, the side of suffering and of saying goodbye to the sport. Because I love the sport, sport is my life. Referring to her future plans, she confided: I know when it’s enough for me, I have those papers.
The evolution of Belgian eligibility requirements was illustrated by the chair of the regulatory authority, Wim Distelmans. For example, if a person is seeking suicide because of depression engendered by lack of a family then, as Wim can’t manufacture a family’, the solution he offers is assisted suicide.
Whilst the Victorian legislation acknowledges risks of coercion into undertaking suicide, and includes some simplistic regulatory precautions to avoid this, it entirely ignores a greater hazard. Sure, coercion can be overt, when an individual is directly targeted, but this could be much less frequent than indirect impacts on people living with disability.
That potential for people living with disability to be indirectly impacted is best exemplified by accounts of those actually living with disability. Two such examples concern statements to the UK parliament in response to the ‘Falconer’ bill to legalise assisted suicide. A third related to legislation proposed in Massachusetts. The three severely disabled individuals were highly articulate and readily attracted media attention.
Baroness Campbell and Tanni Grey-Thompson
The contribution to a House of Lords debate in 2014, by Baroness Campbell severely disabled since birth with spinal muscular atrophy was notable. Description of the Baroness in some media accounts as being ‘confined to a wheelchair’ reflects a prevalent societal perception of disability. (She would regard herself as confined without her wheelchair).
In the event that the Falconer bill became law, she identified a heightened euthanasia ‘danger’ to the disabled and elderly. Referring to ‘hardened attitudes’ among the UK community as a reflection of the economic depression, Baroness Campbell warned that hostility towards the disabled and elderly meant that it would be dangerous to consider changing the existing law on assisting at a suicide. Words such as burden and scrounger were coming into routine use. Hate crime figures in relation to vulnerable people have increased dramatically.
The personal experience of a House of Commons MP, Tanni Grey-Thompson, reported in The Guardian in 2015 described the impact of community attitudes on a person in a wheelchair: One thing that has always surprised me is how many people throughout that period have said to me, “It’s so sad you’re in a wheelchair,” and even at times, “You must have thought of killing yourself.” These comments are as infuriating as they are ridiculous. I’ve had ups and downs, like most people, in my personal and professional life. But I value those – and it is disappointing that others sometimes don’t.
These UK parliamentary comments recall the conclusions of a House of Lords Select Committee two decades previously:
The message which society sends to vulnerable and disadvantaged people should not, however obliquely, encourage them to seek death, but should assure them of our care and support in life . . .. It would be next to impossible to ensure that every act of euthanasia was truly voluntary. We are concerned that vulnerable people – the elderly, lonely, sick or distressed – would feel pressure, whether real or imagined, to seek early death.
Whereas the 1994 Select Committee was concerned with medical ethics in general, more recent bills have had as their specific remit the decriminalisation of assisted suicide.
A compelling account of a disabled person’s US perspective of euthanasia was provided by a 2012 ‘op ed’, Euthanasia by choice: Not so fast. in the New York Times, published when assisted suicide was under consideration in Massachusetts
Its author, Ben Mattlin, was, like Baroness Campbell, a victim of spinal muscular atrophy. He wrote, using a voice-controlled computer:
Next week, voters in Massachusetts will decide whether to adopt an assisted suicide law. As a good pro-choice liberal, I ought to support the effort. But as a lifelong disabled person, I cannot.
My problem, ultimately, is this: I’ve lived so close to death for so long that I know how thin and porous the border between coercion and free choice is, how easy it is for someone to inadvertently influence you to feel devalued and hopeless — to pressure you ever so slightly but decidedly into being “reasonable,” to unburdening others, to “letting go.”
Perhaps, as advocates contend, you can’t understand why anyone would push for assisted-suicide legislation until you’ve seen a loved one suffer. But you also can’t truly conceive of the many subtle forces — invariably well meaning, kindhearted, even gentle, yet as persuasive as a tsunami — that emerge when your physical autonomy is hopelessly compromised
I learned how easy it is to be perceived as someone whose quality of life is untenable, even or perhaps especially by doctors: “How have you survived so long? Wow, you must put up with a lot!” This is but one of many invisible forces of coercion. Others include that certain look of exhaustion in a loved one’s eyes, or the way nurses and friends sigh in your presence while you’re zoned out in a hospital bed. All these can cast a dangerous cloud of depression upon even the most cheery of optimists, a situation clinicians might misread since, to them, it seems perfectly rational.
And in a sense, it is rational, given the dearth of alternatives. If nobody wants you at the party, why should you stay? Advocates of Death With Dignity laws who say that patients themselves should decide whether to live or die are fantasizing. Who chooses suicide in a vacuum? We are inexorably affected by our immediate environment. The deck is stacked.
Yes, that may sound paranoid. After all, the Massachusetts proposal calls for the lethal dose to be “self-administered,” which it defines as the “patient’s act of ingesting.” You might wonder how that would apply to those who can’t feed themselves — people like me. But as I understand the legislation, there is nothing to prevent the patient from designating just about anyone to feed them the poison pill. Indeed, there is no requirement for oversight of the ingestion at all; no one has to witness how and when.
Normalisation of Suicide
The normalisation of suicide, a foreseeable consequence of the Victorian legislation, may well have the impact on some disabled people acknowledged in the Select Committee report:
Some disability activists have raised concerns that more permissive legislation will have a negative impact on such groups, many of whom have suffered from stigma, bias and marginalization.
As practice evolves, it may become significant that eligibility hinges on conditions being incurable. Incurable conditions are not necessarily untreatable.
More articles on Assisted Suicide and Disability:
True Inclusion and What Disability Advocates are Saying about Euthanasia and Assisted Suicide by disability advocate, Daniel Giles
More articles by Peter McCullagh:
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