Shakira Hussein is no stranger to pain that, on a scale of 1 to 10, goes all the way to 11. She writes that one day her multiple scelorosis may usher in ‘the body-snatchers’ for good. This would, she says, provide an overwhelming tempatation for her to ‘destroy the dwelling’ that is her body. Yet she is against the legalisation of euthanasia. She explains why.
Neurology wards are not the location to make pop culture references to Rob Reiner’s 1984 comedy This is Spinal Tap. Asking your medical professionals whether they know Spinal Tap will put you at conversational cross-purposes, with one party to the discussion explaining the relevance of a much-loved rock and roll mockumentary to their current physical health while the other party thinks that they are talking about lumbar punctures.
It’s a pity, because I think of a scene from Spinal Tap every time a doctor asks me to evaluate my pain levels on a scale of 1 to 10. It’s the scene where lead guitarist Nigel Tufnel shows off the band’s speaker system to the filmmakers. Nigel proudly explains that while the dials on ordinary amps go from one to ten, the Spinal Tap amps go all the way to eleven.
I’m pretty sure that at times, the neuralgia associated with my multiple sclerosis has pushed the dial all the way to 11. Worse still, I’m not sure just how high those dials go. I make stupid jokes rather than put a number on my pain because of the fear that what I believe to be the worst agony that I could possibly experience will turn out to be only halfway along the spectrum. The mere possibility pushes my stress levels over the cliff and all the way to 100.
Whatever the numerical evaluation, I have experienced enough pain to know that I do not enjoy it and will go to great lengths to avoid it. If and when I should develop a sudden desire to explore the darkest realms of my psyche by pushing my pain threshold to its outer boundaries, believe me when I say that I would deal with it by signing up to the suddenly middlebrow BDSM scene and writing a trillion dollar bestseller. I would not place myself at the mercy of a pitiless disease that does not believe in the use of safe words. As masters go, multiple sclerosis makes Christian Grey look like a warm, cuddly teddy-bear.
When debating an issue as emotive as euthanasia, we could usefully start by acknowledging that some experiences are near-universal. Only the most fortunate or unfortunate among us will live our entire lives without experiencing physical decline and pain. Many (if not most) of us will also witness the suffering of loved ones towards the ends of their lives. And yet, conversations about euthanasia often commence with a lengthy description of how horrific these experiences can become, as though that was ever in question.
I do not oppose the legalisation of euthanasia because I fail to understand the desire to circumvent pain and dependence. I oppose it because I believe that it is inherently discriminatory for the state to determine that the desire to end life is in some circumstances a psychiatric condition to be combated, but in other circumstances a rational choice to discontinue a life that is seen as holding less value. I oppose it because I do not think that euthanasia is an autonomous choice in a society that so stigmatises diseased and disabled bodies, that sees ageing as decline rather than accumulation, that does not provide speedy and universal access to palliative care, that has long waiting lists for access to pain management clinics, that allows patients to slip through the cracks and does not provide them with the resources to exercise informed and autonomous choices regarding their treatment.
Euthanasia advocates point out that according to the international experience, patients seeking euthanasia are well-resourced and even privileged. But even if this should remain the case over time (and I have my doubts that it would), their supposedly autonomous choice undermines the capacity of others to choose by reinforcing the belief that an impaired life is not a life worth living.
Pain and disease appear in our lives as body-snatchers that invade the vessels once inhabited by the people we love, rendering them unrecognisable as the strong, healthy parents, partners, siblings, and friends that we regard as their true selves. And the body-snatchers wait in the wings to claim us, too. Every so often, they inhabit my body for awhile, and when they depart they take with them a little bit more of my physical strength and energy.
If and when my remitting-relapsing multiple sclerosis becomes progressive, the body-snatchers will have moved in for good. The only way to evict these squatters will be to destroy the dwelling. The temptation to apply for the demolition order may well become overwhelming.
But if and when I reach that point (and I think it will be ‘when’ rather than ‘if’), I do not wish the state to make itself an accessory to my suicide.
Dr Shakira Hussein, from the Asia Institute at University of Melbourne, will be one of the speakers in next week’s Intelligence Squared debate, arguing the proposition that Euthanasia Should Be Legalised, next Wednesday 7 November at 6.30pm.
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