I held my breath, waiting to see if the cry would come again.
“Help! Help! Help!”
I threw back my duvet, stomped through my room, and flung the door open.
“The Nazis are invading.”
“I know, but it all works out in the end, and the reason why I know this is because I have to write an exam on it tomorrow. Go to bed!”
I watched my granny turn out and shuffle back into her room. It was the fifth time that night she had called out, the 900th night in the row, and the early hours of the day of my first A Level exam in Year 13.
Young carers don’t get the kudos they deserve. Caring for an elderly relative is testing at the best of times, but it is a unique pressure on the young. I don’t resent having been a young carer for both my grandparents, nor did I ever frame my role in such a way at the time, it was only later that I came to realise that was what I was doing. It’s not glamorous. My life included wrestling with a chronic diabetic having a violent hypo, trying to get glucose gel on his gums whilst he tried to bite my fingers off; never being able to sleep properly because a dementia sufferer was able to work the stair lift and unlock the front door at 3 am; and one spectacular occasion where my beloved granny projectile pooed all over the living room floor, including my GCSE English coursework. (It may have been a fair reflection on my superficial comparison of Iago and Medea).
My granny died last year after nearly ten years of suffering from lewy body dementia, the most horrendous manifestation of what is an already awful disease. If I could go back and be a better carer to her, I would, I really would.
This week, Neil Conway is launching a challenge on the UK’s ban on assisted dying. Conway has motor neurone disease and his case at the High Court is for ‘the right to a dignified death.’ It prompted James Hale, a poet and disabled rights activist, to write an article for The Guardian, which is a moving read indeed. Hale writes,
As someone who relies extensively on social and medical care, I have great empathy for [Conway’s] fear of losing dignity, and the desire to avoid suffering or a drawn-out death. However, legalising assisted suicide is a dangerous way of achieving those goals.
Dying, even the ‘best’ deaths, is not dignified, how can they be when they are not part of God’s plan? But this does not mean that dying should be hastened, to get it over and done with.
My boss lives and works at a wood. It’s more complicated (and exciting) than this description, but just imagine a wood. Recently, she took a delivery of ex-battery farm chickens. To look at them, you realise why God designed chickens to have feathers, because chickens which don’t have feathers look… interesting. These poor chickens weren’t totally convinced of their new freedom and took some encouragement to venture out of their box. But one chicken, infamous in the office as Kamikaze Chicken, made it out of the box. She made it through the electric fence and into a bush where she made herself silent and still so she could not be found.
So often in discussions arguing in favour of assisted suicide there are utilitarian undertones. As a theological ethicist, I am necessarily wary of utilitarianism (which itself is varied and deserves more than being idly bandied about). The very very general gist is that an action is right in as far as it enables happiness, and that the greatest happiness of the most number of people is what to aim for.
The problem insofar as assisted dying is concerned is that the greatest happiness for the most number of people has led to the development of people being seen as burdens if they require a certain amount of care and support. It’s a false narrative. People aren’t burdens if they need caring for. Whether you articulate this as ‘love your neighbour’ or through the golden rule, to need caring for doesn’t make you a burden or an inconvenience. And we need to stop framing caring for the sick and dying as such. In a time where the welfare state in the UK is on a precipice, the attitude of casting off burdens could have – will have – fatal consequences.
Kamikaze chicken repeatedly made a break for it, and my boss repeatedly pursued her and brought her back to safety where she could be nurtured back to health. When your granny explosively craps on your English coursework, you mop it up and you make her a cup of tea. When someone is dying, you don’t frame your selfishness and reluctance to care for them as putting them ‘out of their misery.’ Not caring for them is what puts them in their misery.
Hale notes, ‘When social care visits are rushed, being left wearing a filthy incontinence pad feels undignified… But this is neither necessary nor inevitable.’ Human bodies are beautiful and terrible things. But when human beings care for each other as they should, when relationships are strong, there is no loss of dignity, despite what your body throws at you.
In his first novel, Leonard Cohen writes, ‘Children show scars like medals. Lovers use them as secrets to reveal. A scar is what happens when the word is made flesh. It is easy to display a wound… It is hard to show a pimple.’ In our promethean attempt to postpone death, we’ve over-sanitised our bodies. That is how loss of dignity has become something to be afraid of. But when we’re in relationship with each other, there is no loss of dignity because you don’t see bodily integrity as the marker of that person’s worth. Then you no longer fear showing pimples, rather you laugh at them, together. A bit of mess in an ‘oops,’ a featherless chicken sure looks interesting, but it is still a chicken.
The most amazing thing about the cross event, is that wherever you pause the story, hope always bursts through. Pause it at the crucifixion, and when you’re in pain and suffering, the hope is that you are not alone in it, for God is going through it with you. Pause it at the ascension, and you have the hope of God’s commitment to corporeality. Pause it at the resurrection, and the hope you have is death has been defeated.
Our discussions on assisted dying begin from a flawed premise, one where there is fear of bodies and dying, one which showcases how little human beings care for each other that loss of dignity and being a burden become reasons for wanting to hasten the end.
People are not battery farm chickens. We are not designed to give everything we’ve got and when we fail, be cast aside. We are designed to love one another, to care for one another, to look despair and decay and then death in the eye and say ‘not yet,’ rather than pushing someone into death’s grasp. With life to come, caring for someone until the very end, however messy it may be, is the affirmation that life really is worth it.
Kamikaze chicken needs a new epithet. She’s not made a break for it since her latest return to her fellow chicken friends. It’s amazing how you can bear all things when you know you’re cared for, when you know you’re loved.