As I sit here writing, my back on fire, my feet feeling like they have shards of glass inserted deep into the tendons, I want to say this: I get it. I have understood since I asked my mum to remove the razors from my hospital bathroom. There is a desperation, a hopelessness of facing a life where your current, terrible situation is unlikely to improve that moves beyond depression into profound despair.
I am not pretending that I understand (yet) what it is like to be in a wheelchair, though I sometimes need to use sticks to walk. I am not pretending I know what it is like to be unable to wipe my own bottom, though there are days when I can barely get off the toilet and feel chained to it. I often have to make an unenviable choice between passing the day in bone-deep, strength-sapping pain or taking pain killers that dull the body and mind (not great when, as a PhD student, my primary occupation is thinking). So no one can and should accuse me of not understanding, of lacking compassion.
Because my fear is that this is where the assisted dying debate is heading. In his recent article reversing his opposition to assisted dying, former Archbishop of Canterbury Lord Carey cites the need to prioritise "compassion" over "doctrine" as being one of the key reasons for his change of stance (http://www.dailymail.co.uk/news/article-2689295/Carey-Ive-changed-mind-right-die-On-eve-Lords-debate-ex-Archbishop-dramatically-backs-assisted-death-law.html). There seems to be a growing, insidious assertion by some promoting the assisted dying bill that those in opposition are only against the bill because they cling to outdated principles ("dogma", as Lord Carey calls it) and place those principles above their compassion for fellow humans. "If only you experienced or witnessed the suffering," the argument goes, "you would surely change your mind."This argument, whether made overtly or covertly (and indeed deliberately or unconsciously) is deeply patronising. "I am further down the road than you - if you had seen what I have seen, experienced what I have experienced, you would come to the same conclusions as I have."
To which I say: no. I live in chronic pain, with little hope of long-term relief. I sometimes can't get off the toilet. I have trouble walking. I sleep for ten hours a night and still feel like I am wading through treacle. I know what it is like to suffer. Yet I am against assisted dying, in spite of the fact that there are days when I think: why go on? If this is it for the rest of your life, why continue?
My personal answers to those questions are based heavily on my faith in a God who loves us and is in control over what happens in our lives (a faith which, incidentally, is stronger now than it has ever been, not in spite of but because of the suffering I am experiencing). But even without such faith, there are strong arguments against ending your life. And crucially, there are stronger arguments against changing the law, which, we should not forget, is the primary issue which is currently being debated in parliament.
The main reason, as the current Archbishop of Canterbury Justin Welby has pointed out, is the precedent that a change in the law would set, such that many elderly and vulnerable people would feel duty-bound to end their lives (http://www.telegraph.co.uk/news/religion/10963362/Archbishop-Welby-Assisted-dying-is-sword-of-Damocles-over-vulnerable.html). To those who dismiss this fear, I say this: I am a young and independent person, yet I have sometimes fretted about the burden of worry and distress I place on my loves ones, and thought in my darker moments that it may be better for all concerned if I were to die and allow people to mourn and get on with their lives. If this has crossed my mind, how much more so those who have severe disabilities which place a great burden of care on their loved ones?
Up until now, premature death has not been an option. But if this bill were to pass, it would open up the possibility, which would be enough to cause great disquiet and distress in the minds of countless people who feel themselves to be a burden. Lord Carey argues that his change of stance is motivated by the desire to minimise anguish and pain, in accordance with the Christian message of hope. What about the untold anguish for countless numbers who would, if this bill were to pass, need to face the impossible decision of whether to end their own lives or continue living and being a burden on their loved ones? Surely this bill would compound the distress of themselves and their family in an already difficult situation? (For an excellent reflection on what this might look like, see Giles Fraser’s blog: http://www.theguardian.com/commentisfree/belief/2014/jul/04/assisted-dying-triumph-market-capitalism)
The pro-assisted-dying argument that counters the above assertion goes as follows: “this law would only apply to a limited number of people, and strict safeguards would be put in place”. But we can see from other countries such as the Netherlands that such laws rarely stay limited in this way (see the comments of Dutch Professor Theo Boer, a former advocate of assisted dying: http://www.dailymail.co.uk/news/article-2686711/Dont-make-mistake-As-assisted-suicide-bill-goes-Lords-Dutch-regulator-backed-euthanasia-warns-Britain-leads-mass-killing.html)
“But why should people in intolerable pain suffer for the sake of what might or might not happen further down the road?” Let me flip this argument on its head: why should the many disabled and vulnerable people who currently live in this country be put at risk of harm and distress for the sake of a few, understandable though their wish to die may be?
The quality of life argument is also an interesting one. Lord Carey argues that it is quality of life, not number of days, which is important. I agree. But poor quality of life is not something set in stone; an impairment can be mitigated by societal and personal factors. A person with chronic pain undoubtedly has reduced quality of life due to their condition; however, the support of family and friends, the use of medications and the development of new technological interventions can go some way to counterbalancing this (see here for an awesome new invention designed to help people who are paralysed: http://www.bbc.co.uk/news/health-27828553). Poor quality of life is not a hopeless death sentence. Can we not focus on improving people’s lives, rather than ending them?
I argue against assisted dying in spite of my current state of chronic pain, for the sake of others who cannot speak for themselves, and because ultimately all life is precious. You may disagree with me. But please don’t say that I will only change my mind if I could have experience of suffering. I have this in abundance.