The careless conflation of independence, autonomy and dignity

As Jersey begins to legalise assisted dying, there’s keyword confusion.

Henna Cundill

Henna is a researcher with the Centre for Autism and Theology at the University of Aberdeen.

A elderly women in a care home stands and places her hands on the shoulders of a seated woman.

Eberhard Grossgasteiger on Unsplash.

Reviewing Canada’s legislation on assisted dying, one anonymously authored article raises the concern: “Does it make dying with dignity easier than living with dignity?” This insightful question cuts to the centre of the debate: dignity. Or more particularly, the unwitting conflation of dignity with independence, and of independence with autonomy.

As Jersey becomes the first place in the British Isles to begin the process of legalising assisted dying, I feel that we should listen carefully as to how and where these terms are being used, both in the formal debate, and in the commentary that surrounds it. The States Assembly in Jersey voted to allow the development of assisted dying legislation for those with six months to live (or twelve months if their condition is neurodegenerative). A second vote to make assisted dying available more broadly to those who experience conditions that entail “unbearable suffering” was defeated by a narrower margin. Reading the flurry of press releases that followed the vote, these keywords, autonomy, independence, and dignity, are everywhere. But are we really thinking about what these words communicate?

People in positions of wealth and power have more independence and autonomy, more choices and freedoms, but it is we who ascribe dignity to those in that position.

The word dignity comes from the Latin word dignus, meaning ‘worthy’, and this is still the primary definition given to the English word dignity today. The OED has it as “the quality of being worthy or honourable”, immediately followed by reference to “honourable or high estate”. If this is so, then dignity is not something that can be bought, nor assumed – it is a status conferred upon someone by the esteem in which other people hold them. The haughtiest person in the world can still be esteemed undignified, as can the richest. Moreover, the opposite is also true: we are never prevented from conferring dignity upon, and esteeming the worthiness of, those who live the humblest of lives.

And yet, if we are honest with ourselves – do many of us not quietly associate the idea of becoming rich and powerful with becoming dignified? Do we not tend to assume the worthiness of those in high office – at least until we meet them and realise pretty quickly that they all put their trousers on one leg at a time, the same as the rest of us. This association happens because we have such a tendency to conflate dignity with independence (the ability to live without assistance from others) and autonomy (the ability to make one’s own decisions, and not have those decisions limited or interfered with). People in positions of wealth and power have more independence and autonomy, more choices and freedoms, but it is we who ascribe dignity to those in that position. It is society who sees the autonomy of those in high status, and esteems it as dignified.

Does this not unwittingly suggest that choosing to live in a state of extreme dependence on palliative care is, by implication, undignified?

Repeatedly ancient wisdom, in the bible, warns us not to assume that dignity comes with the freedom of wealth or power. All the great ‘heroes’ of that book suffer their indignities. Fresh from the success of his Ark project, Noah gets drunk and exposes himself. Elated from a victory against an enemy, King David dances half-naked through the streets. These are just two examples of the catalogue of embarrassments and mishaps that beset nearly all the kings and leaders whose stories are told as part of the Christian story. One after another, they stumble and struggle with life and leadership. The apostle Paul explains that this is because God uses the foolish things of this world to shame human pride, “for even the foolishness of God is still wiser than human wisdom.” Therefore, Paul argues, God chooses to speak to us through the weak and the lowly things and people of this world. Never was this demonstrated so clearly as when Jesus was born in a draughty stable, lived a life of poverty, and died a criminal’s death on a cross.

But what has all this to do with the debate over assisted dying? Well, I am struck by how often the idea of losing one’s independence (through disabling or terminal illness) is conflated with losing one’s dignity, and so dying through personal choice (autonomy) is presented as regaining it. One campaign group that speaks to this debate even calls itself ‘Dignity in Dying’ – but does this not unwittingly suggest that choosing to live in a state of extreme dependence on palliative care is, by implication, undignified?

Independence is not possible for everybody, or not possible to the same degree. And dignity? Well, dignity is possible for anyone.

The Dean of Jersey, the Very Reverend Mike Keirle, has spoken of his concern that the change in legislation will make vulnerable people feel pressured to end their lives. Examples from Canada, where physician assisted dying is already available, show that his concern is not unfounded. In 2022, Canadian veteran and Paralympian Christine Gauthier phoned her caseworker to chase up the over-due installation of her new wheelchair ramp. She then describes how she was horrified to find herself being advised to consider assisted dying instead.

"It is remotely just what they're doing,” says Gauthier, “exhausting us to the point of no return. […] I was like, 'Are you serious?' Like that easy, you're going to be helping me to die but you won't help me to live?"

Gauthier is not alone – she spoke out when she learned that four other Canadian veterans had reported similar experiences. In these unhappy moments, one can see how dangerous the assumption can be – the assumption that no one would want to live a life of needing help. Here are disabled people who do want to live, and this assumption, this careless conflation of independence, autonomy, and dignity, leaves them fighting for their right to do so. Why should anyone have to fight or even speak for their right not to commit suicide? It is little wonder that disabled actress, Liz Carr, describes assisted dying legislation as “terrifying” for disabled people.

I respect that there are terminally ill people, and those who love them, who speak from a desire to end their suffering; it is clear that people on all sides of the debate need to have this difficult and emotionally charged conversation. But whatever the eventual outcome in terms of legislation, we must be careful that it is not based on careless assumptions, or on the conflation of one thing with an entirely different other. Independence is not possible for everybody, or not possible to the same degree. And dignity? Well, dignity is possible for anyone – it is a state that can be conferred whenever, and upon whomever society chooses to confer it. Autonomy is the matter in question – we are talking about autonomy in dying. And whatever happens, we should by no means legislate in a way that leaves disabled people esteemed unworthy, left open to the indignity of fighting for their right to live.

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9 May 2024

5 min read

Bitterness and weaponised words can’t soften scars

Finding peace for Daniel Anjorin, Salman Rushdie and Bishop Mar Mari.

Krish Kandiah

Krish is a social entrepreneur partnering across civil society, faith communities, government and philanthropy. He founded The Sanctuary Foundation.

A man sits being interviewed and holds a hand to the side of his face, one lens of his glasses is tinted black.

Salman Rushdie discusses his attack.

BBC.

Knife crime around the world is unacceptably high, and with around 50,000 offences expected this year in the UK, it is sadly no surprise when we hear tragic news stories involving knives and sharp instruments. Recently, it was the terrible circumstances of the death of Daniel Anjorin that made the headlines. The gentle, much-loved, 14-year-old boy was on his way to school in East London when he, along with several others, was randomly attacked by a man with a sword. He died from his wounds shortly after being taken to hospital.

I happened to be in the middle of listening to Knife, a memoir by Salman Rushdie, when the news broke of that tragedy. It is another heart-rending story. Rushdie describes how, in 2022, during a speech he was giving about the need to protect writers, a man ran onto the stage and frantically stabbed him 15 times. Rushdie was airlifted to a hospital and survived the attack but lost an eye. Then began his difficult physical and emotional journey towards recovery, documented in the book he never wanted to write.

It was not the first time Rushdie had been the victim of aggression. In 1988, following the publication of his novel The Satanic Verses, the Iranian government called for Rushdie’s death by issuing a fatwa against him. His book was perceived to be blasphemous to the Islamic faith, and despite ten years of round-the-clock police protection in London, he faced several serious assassination attempts.

The fatwa was lifted in 1998, but twenty-four years later, Rushdie was clearly still not safe. He recounts the moment when he saw the man running at him in the darkness as he gave his lecture.

“My first thought when I saw this murderous shape rushing towards me was: So it is you. Here you are…. It struck me as anachronistic. This was my second thought: Why now? Really? It’s been so long. Why now after all these years? Surely the world had moved on, and that subject was closed. Yet here, approaching fast, was a sort of time traveller, a murderous ghost from the past.”

I can’t imagine how I would cope in his shoes. I have not had to experience the daily fear of assassination for decades as Rushdie has. In all my years of delivering speeches and sermons on stages around the world, I have never had cause to even contemplate the possibility of an attempt on my life. Nevertheless, I was surprised to hear in Rushdie’s voice, the words he chose to say to his attacker:

“If I think of you at all in the future it will be with a dismissive shrug. I don't forgive you. I don't not forgive you. You are simply irrelevant to me, and from now on, for the rest of your days, you will be irrelevant to everyone else. I'm glad I have my life and not yours and my life will go on.”

Rushdie admits that his words are his weapons – and he certainly uses them to good effect. They are sharp. They are designed to eviscerate. They are calculated to cause pain. They express derision towards his attacker. Part of me cheers him on: a defenceless man in his seventies who walked into a lecture hall expecting to give a speech to rapturous applause but left barely alive as the victim of a brutal frenzied attack. Like the plot of every action movie I have ever seen, the story seems to have a happy ending – the hero is saved, the bad guy is locked up and justice is seen to be done.

But there is another part of me that knows these Hollywood endings can’t be trusted. Those 27 seconds of violence have clearly left Rushdie reduced to spitting insults at a young man in prison. He claims his life now is “filled with love”, but sadly there is little evidence of it in the way he addresses the radicalised 24-year-old. Bitterness and weaponised words, however eloquent, can’t soften the scars, nor do they make the world a safer place.

Indeed, I have found it difficult to forgive the comparatively trivial experience of being metaphorically stabbed in the back.

I can’t help but compare Rushdie’s reaction with that of Bishop Mar Mari Emanuel. The day before Knife was published, the Iraqi-born bishop was preaching at his church in Sydney, Australia, when he too was attacked by a young man with a knife, and, like Rushdie, ended up losing an eye. The attack was an overt terrorist act against Bishop Mar Mari, a controversial figure who has spoken dismissively about the Islamic, Jewish and LGBTQ+ communities.

Despite the striking similarities between the two men’s terrible ordeals, the contrast in their response couldn’t be starker. Speaking just two weeks later at a Palm Sunday service, Bishop Emanuel affirmed that he had forgiven his teenage assailant:

‘I say to you, my dear, you are my son, and you will always be my son. I will always pray for you. I’ll always wish you nothing but the best. I pray that my Lord and Saviour Jesus Christ of Nazareth, to enlighten your heart and enlighten your soul your entire being to realise, my dear, there is only one God who art in heaven…. the Lord knows it is coming from the bottom of my heart. I’ll always pray for you and for whoever was in this act. In the name of my Jesus, I forgive you. I love you, and I will always pray for you.”

Woven into the fabric of every form of Christianity is a commitment to love and forgiveness, clearly exemplified for us here by Bishop Mar Mari. His words resonated around the world this week as he returned to the pulpit where he was stabbed, bandage over one of his eyes, to speak out with kindness and compassion.

I am deeply challenged by the bishop’s response. I have never experienced the physical pain and emotional trauma of a knife attack. Indeed, I have found it difficult to forgive the comparatively trivial experience of being metaphorically stabbed in the back. I know how hard it is, to be gracious to those who deliberately cause pain to me or to my family members through their actions. Like Rushdie, I sometimes I would like nothing more than to see them locked up, living a loveless, meaningless, irrelevant life. But this is not the Christian way. I follow Jesus who forgave the soldiers driving nails through his hands and feet, so I must strive to be compassionate to those who do us much lesser harm, as well as seek, in his name, to tackle the underlying causes for the greater dis-ease in society.

The issues that lead to knife crime are many and complex. They include poverty, fear of victimisation, gang culture, radicalisation, distrust of authorities, lack of education, experience of violence in childhood, and much more. Whatever we can do to tackle these problems, we do for the sake of love and peace in our world. Perhaps as we seek to overcome these things together, we can work towards a day when what happened to Daniel Anjorin on 30th April can never happen again.