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 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.

Column

Comment

General Election 24

Morality

Politics

2 July 2024

4 min read

Make it a morally decisive election

This week we’re making more than a political decision.

George Pitcher

George is a visiting fellow at the London School of Economics and an Anglican priest.

A AI generaed montage shows two politicans back to back surrounded by like, share and angry icons.

The divide

Nick Jones/Midjourney.ai.

I still treasure my copy of the New Statesman from almost exactly 13 years ago, which was guest edited by the then Archbishop of Canterbury Rowan Williams. I’ve kept it partly because I organised the edition and deputy edited it on his behalf. And partly because it cost me my job as public affairs chief at Lambeth Palace after it provoked predictable Conservative backbench fury for his alleged meddling in politics.

Digging it out now, there are some surprises from near that beginning of the 14 years of Conservative rule that’s expected to come to its end this week. The first is how mild mannered is the archbishop’s leader comment that cause so much trouble. In the years since, politics has become brasher and blunter, more facile and reductive.

The second surprise is the fuss it caused at the time. Williams is politely critical of politics across the board and there’s a plus ca change moment when he wonders “what the left’s big idea currently is… we are still waiting for a full and robust account of what the left would do differently”.

And he could be talking about now as he concludes by hoping for a “democracy going beyond populism and majoritarianism… capable of real argument about shared needs and hopes and real generosity; any takers?”

A magazine cover lists articles on one side and an image of half a face on the other.

That final question may get its answer this week. But at this distance, the furore that Williams caused in government takes on a different perspective. We can see, partly as a consequence of what’s happened latterly, that he wasn’t really mounting a political argument at all. His was a moral case, a prophetic voice calling out how the government, any government, “needs to hear just how much plain fear there is.”

That fear hasn’t abated 13 years after that article. It has built around a faltering economy, an island mentality inflamed by the perceived threat of migration and a sense that a political elite has abandoned its people.

Political policies alone aren’t going to salve this pain. The response to it needs to be as much a moral as political one, as caught by the headline I wrote above Williams’ piece all those years ago: “The government needs to know how afraid people are.”

The government in power for the past 14 years has chosen not to address, or has ignored, or has been incapable of addressing the morality of our societal decay, favouring instead a search for eye-catching policies and initiatives that it has hoped, admittedly with some success until now, would also be vote-catching.

That it has now run out of road has as much to do with its moral as its political failure. When Williams published that piece, we were talking about the Big Society, the prime minister was on a mission to save the planet and urged us to “hug a hoodie.” Such moral imperatives seem very distant now and a moral degeneration in government has tracked the downward slide of the governing party in the opinion polls.

So we’re not asked just to make a political decision this week. We’re making a profoundly moral one.

We haven’t had a prime minister for whom morality was a governing principle since David Cameron laid claim to one (perhaps disingenuously) in his early days, before being led by his chancellor, George Osborne, into enforced economic “austerity” with surely one of the most cynical assurances of modern times that “we’re all in this together.”

Brexit did for Cameron and his successor Theresa May. She, I believe, is guided in public life by a personal morality, rooted in her Anglo-Catholic clergyman father, but by now there was no room for all that. Her “hostile environment” for illegal immigrants, with vans telling them to go home, was a moral low point which then found its hideous nadir in the Windrush scandal, with elderly people who had lived here all their lives threatened with deportation.

Boris Johnson thought that he could make a political virtue of his immorality, a demonic possession that made him believe that he’d be loved for it. So he fiddled while Covid burned, partying in Number 10 while those who had voted for him were denied access by his rules to their dying relatives.

I wrote in the Guardian that he wouldn’t be able to hide his immorality in Number 10 when he became leader and was sadly proved more right than I could have known. Liz Truss is said to be on an autistic spectrum, which is the kindest way to explain her mini-budget that offered tax-breaks for the wealthiest in the midst of a cost-of-living crisis for the rest of us.

Rishi Sunak is widely said to be a decent man, but it's too late. This government had already rotted from the head – witness the spivs in its ranks hoping to make a fast buck out of the date of the general election.

So we’re not asked just to make a political decision this week. We’re making a profoundly moral one. It’s time to turn the fear that the archbishop observed into moral indignation.

It’s not really about who we want in government. It’s what we need, morally, to expel from it.