Article
Assisted dying
Comment
Death & life
Politics
5 min read

The careless conflation of independence, autonomy and dignity

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

Article
Comment
Community
Nationalism
5 min read

I protested against the Unite The Kingdom protest

The need to see one another

Thomas is a writer exploring the intersection of faith, politics, and social justice.

CCTV footage show two rival protests divided by a line of riot police.
CCTV image of the rival protests on Whitehall.
Met Police.

I don’t know why I was so concerned about the horses. I kept noticing them swaying through the sea of shivering bodies. I was so drawn to them that I tried to take a photo, a rare occurrence for me, but I was too far away. The horses riders, dressed in full riot gear, were being pelted with beer bottles. Maybe the horses were getting hit too, but it felt like they were recoiling on behalf of their riders. 

In front of the horses, engulfing Trafalgar Square, were tens of thousands of “Unite the Kingdom” protestors. From what I could see, they were predominantly white men. Many of them were dancing and waving flags, but a sizeable contingent was furious, drunk, and insisted on attacking any unfortunate police officer in their way. 

Behind the horses, lining the streets of Whitehall, were five thousand counter-protestors, including me. Unlike our opposite numbers in Trafalgar Square, we were trapped, surrounded on every side by St George’s flags, Union Jacks, and, oddly, some Georgian flags too. Maybe the shop had sold out. To my right, I could see the counter-protestors defiantly dancing. To me left, I could see a group chanting “Nazi scum, off our streets” whilst swearing towards the St George’s flags. 

There in the middle, I found myself feeling a curious mixture of discomfort, sadness, and anger. Uncomfortable because I’d been trapped for four hours, stuck on a continuous cycle of rinse and drain. Sad, because I knew that much of the “Unite the Kingdom” violence was built on misinformation and the scapegoating of refugees, a group I know well, and because this fog of violence blew over the counter-protestors as they hurled insults towards the St George’s flags. And angry, because figures like Elon Musk were using their extraordinary wealth and influence to spread fear and lies: “Whether you choose violence or not, violence is coming to you. You either fight back or you die. You either fight back or you die. And that’s the truth. It’s only a matter of time till that happens to towns and villages. It will spread. And no one will have any peace.” Over the years, I have spent many hundreds, if not thousands, of hours with refugees and asylum seekers, both in my home and at my church. I had experienced no violence. In that moment, I was surrounded by “leftists”, socialists, and trade unionists, and the only violence I was experiencing was from the glint of beer bottles raining down on the police two hundred meters away. 

I was grateful for the interruption of an elderly lady asking if she could get past. I’d been asked a number of questions throughout the day, primarily because I was one of a group of four Christians holding signs like “Jesus was a refugee”, “love thy neighbour”, and “I was a stranger and you welcomed me”. At the start of the protest, an older lady and a young man joined our circle. The young man asked “I’m glad to see there are some Christians here. What do you think of Christian nationalism? Your religion doesn’t feel much like Jesus?” He was a brave Saudi Arabian refugee with a bright smile, earnestly questioning the fractures in my community of faith. Taken aback by the poignancy of the question, I fumbled a response before being rescued by one of my friends. 

Protest signs written on cardboard.
Tommy's protest signs before the rain.

 

After a while, the older lady started speaking. “Sorry for interrupting. I used to be a Roman Catholic, but I’ve lost my faith. On days like this though, I always want to pray. I don’t feel much hope for the church. A while ago, I went into a catholic church. I asked if the church could do anything about the divisions in our community and the anger at refugees. The priest shrugged and said no. I’m glad you’re here.” Her short, staccato sentences mirrored the tension of the day. I told her about how our church serves refugees, how I struggle with the anger of days like today, and how some of us have forgotten that the bible tells us to welcome the stranger dozens of times. As they walked away, I felt touched by the honesty both the young and old had gifted to four strangers, and I was glad to be carrying our smalls signs of hope. 

The megaphone brought the present back into view with another question. “Could everyone please get ready to leave up the left of Trafalgar Square?” it said. The police had cleared a path for us to leave, the sea of flags artificially parted by riot gear. We were escorted to Green Park tube station, at which point we turned off towards Oxford Street. My wife remarked at how quickly normality returned. I was devastated by the day, but felt too tired to weep. I wasn’t quite the same Tommy that I’d been that morning. The man who shares my name, and the chaos he wrought on my city, had turned a dial in me a little further than it had been turned before. 

I knew that I would have more days like this. In the midst of my discomfort, sadness, hope, and fear, I knew that I was supposed to be there, holding my soggy “Jesus was a refugee” sign, shivering in my damp clothes, and praying under my breath. I knew that I needed to gather other reluctant protestors alongside me, holding their own soggy signs and praying their own prayers. 

And I also knew that there was a better way to carry this fragile message of unity in our increasingly fragile land and increasingly fragile time. As a half-British, half-South African man, I’ve had the privilege of growing up with the stories of the anti-apartheid movement, stories which steward the hard-earned truth that defiant, tenacious, persistent love is the only antidote to hatred, misinformation and fear. As Desmond Tutu once said, “when we can accept both our humanity and the perpetrator’s we can write a new story”. Saturday left me feeling that we desperately need a new story, and that requires us to look beyond the swaying horses and see one another clearly. 

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