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

Community

Politics

28 November 2024

4 min read

Here's why we need to keep democracy holy

It's much more than a utilitarian deal that benefits the most.

George Pitcher

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

A sign reading 'polling station' stands by the entrance to a church.

Red Dot on Unsplash.

One of the more ludicrous constitutional contributions of late has been the parliamentary petition, with well past two million signatures when I last looked, demanding another general election be called, because the Labour government, elected in July, has “gone back on the promises they laid out in the lead-up to the last election.”

Prime minister Sir Keir Starmer has surprised precisely no one by saying that he won’t be calling one. And so we’ll move on. But, in passing, what is truly breathtaking is how little our democracy is understood and, apparently, how unseriously democracy in the west is now taken. If that sounds unduly censorious, I have a two-word response: Two million!

Little time need be spent on demolishing the premise of this spurious petition, other than to wonder how many of those signatories would have appeared on one calling for, say, a fresh mandate after the coalition government of David Cameron and Nick Clegg (where is he now? Ah yes) performed a massive reverse-ferret on a manifesto pledge not to raise university tuition fees.

Or how many of these same fearless electors believe the result of the Brexit referendum should be voided because of the lies of the Leave campaign, most notable the one painted on the side of Boris Johnson’s battle bus. But no – two million residual, self-righteous righties can only be mobilised against a Labour government.

This event none the less raises valid questions about what our democracy is (and is not) and why we should want to protect or even cherish it. These questions become the more critical because there’s a tangible feeling of slippage in western democracy, as if we’re growing a bit tired and even contemptuous of it.

There’s the ominous re-growth of nationalism across Europe. And not a few bien pensants – me included, to my shame – might admit to a feeling after Donald Trump’s re-election as US president that democracy is too important to be left to the people.

Slightly more seriously, we need to ask ourselves what the qualities of democracy are that we should seek to defend. The first of these is, quite obviously, the rule of law. Should a political actor seek to overthrow a democratically established electoral process, then that is a crime within the rule of law. Witness the horrors on Capitol Hill in Washington DC on January 6 2021.

That’s the Feast of the Epiphany as it happens, but nothing to do with the coming of wise men. With Trump at the centre of it. Draw your own democratic conclusions – and weep for the rule of law.

Natural justice is to ensure that vexatious petitions don’t overthrow legally elected governments, either by lobby or violence.

Again, why does this matter and what is it about democracy that we hold sacred, even holy? It can’t simply be that we hold dear a kind of hard utilitarian ideal that what we elect to do is for the benefit of most of the people, for most of the time, as decided by popular mandate among the demos.

If we believe in democracy, as I believe most of us do, we’re presented with a choice: We can look to secularism as a solution, universal Enlightenment principles built on citizenship and equality before the law. Or we can look to a multiculturist model, keeping the peace between essentially separate communities and the state.

Or we can shape something on Augustinian Christianity, that recognises the limits of political democracy, which would eschew undemocratic theocracy, but which would hold that no political order other than the Body of Christ (the Church) can claim divine authority.

We’re in classic Rowan Williams theological territory here: “[T]he Body of Christ is not a political order on the same level as others, competing for control, but a community that signifies, that points to a possible healed human world.”

Unsurprisingly, I buy that. Williams goes further to state this spiritual effect on the political environments in which we find ourselves is likely to be “sceptical and demystifying.” Which seems to be a reasonable manifesto in a democracy.

The principle of election can be a worrying one in theological terms. We don’t “elect” God, though some secularists would claim that the Godhead is our invention. Rather, it has sometimes been perceived to be the other way around historically.

Reformational Calvinism would hold, among many other things, the rather terrifying view that we’re elected by God. “The Elect” are those who will be saved, while the rest of us (I presume) can rot in hell. Little democracy there.

Less deterministically, a more modernist worldview would argue that the Christian faith, on which foundation western civilisation is built, offers a viable moral definition of the lawful state, with which politicians of all (democratic) persuasions can tackle issues of global justice.

One such issue of natural justice is to ensure that vexatious petitions don’t overthrow legally elected governments, either by lobby or violence. That’s an important aspect of Christian witness and will require true grit in in its application during the years ahead. That’s, if you will, our grit in the democratic oyster.