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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Politics

5 March 2024

5 min read

Politics needs some deep stirring emotion

In politics, the struggle between our reason and desire is a fair fight.

Henna Cundill

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

A young woman in a blue suit stands at a wooden box in a parliamentary debating chamber looking upward while speaking.

British Youth Council parliamentary debate.

British Youth Council.

“The government you elect is the government you deserve.” So goes the famous quote, variously attributed to Thomas Jefferson, Joseph de Maistre and George Bernard Shaw. Of all these thinkers, Maistre is perhaps the most interesting, describing the business of government as a kind of religion, a political “faith” – one complete with dogmas, mysteries and even ministers.

Maistre was, somewhat surprisingly amid the turmoil of eighteenth-century France, a staunch monarchist. His argument was that, if the authority of a political leader was only a product of social convention, then that authority would always lack a sufficient degree of legitimacy, leaving the door wide open for violence and strife. His solution was to defend the divine right of kings. This was a controversial position, as much then as it is now.

Aside from his famous quote about elections, Maistre’s political philosophy is oft-criticised as polemical, hearkening back to a golden era of European monarchy that never really existed. Nevertheless, within his writings, Maistre laid bare a reality that we often prefer to keep veiled: that our political will is as much about what we find to be emotionally compelling as it is about what we find to be rationally convincing, indeed, the latter is very much dependent on the former. The more social scientists are able to demonstrate the reality of subtle phenomena such as confirmation bias, unconscious bias, and racial prejudice, the more we see that we are often being governed by pre-cognitive or non-cognitive instincts, even those of us who like to think that we are better than that. In the end, we have to concede that when it comes to politics, as with so much else, the struggle between our faculty of reason and the desire of our heart is a fair fight.

“They have few standards by which to judge between falsehood and truth in revolutionary movements.”

Amy Buller

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In 1930’s Europe, there was certainly a lot of emotionally compelling politics around. Fascinated by the language and culture of the German people, thinker and educator Amy Buller made repeated visits to Germany from the 1920’s onwards, often accompanied by reading parties of British academics, church leaders and university students. In those decades, as the political landscape of Germany began to shift, her purpose became less about countryside walks and studying, and more about the facilitation of urgent, open and honest dialogue between Buller, her fellow travellers, and their German counterparts in the churches and universities wherever she had contacts. As Hitler rose to power, and even before the full horrors of Nazism became widely known, Amy was compelled to find out why so many people, especially young people, were being attracted by what she saw as a “brutish” ideology.

In 1943, amid the violence and destruction of World War II, Buller published a book, Darkness Over Germany, which gives a first-hand account of the many people that she and her travelling parties had met, and the conversations that had taken place. Like Maistre, Buller proposed that without God, politics was a dangerous kind of faith in something, one that tended towards violence. In the introduction to her book she writes of “…the tragedy of a whole generation of German youth, who, having no faith, made Nazism their religion.”

It’s common these days to hear complaints about the political apathy of the young, with polls commonly reporting that only about 50 per cent of British 18 to 24-year-olds are intending to vote in the next General Election. However, there are those who raise the caution that this may not be a symptom of apathy, so much as a symptom of the cultural and structural injustices that put barriers in the way of young people engaging with our nation’s political life. Young people are not likely to “believe in” a political system from which they feel excluded. As Buller’s writing notes – when this happens, young people are likely to put their “faith” in something else.

Maistre’s solution was perhaps too extreme for modern sensibilities: asking the politically minded populace to believe that their leaders were imbued with the authority of God, by God. In the twentieth-century, Buller took a more moderate view. As the Nazis began to view her with suspicion, trips to Germany became increasingly difficult to arrange, so she travelled elsewhere to places such as Hungary and Bulgaria. Wherever Buller went, she found more and more young people who wanted to talk to her about their political hopes and ideals. Summarising the whole, Buller suggested that Europe’s political landscape was eschewing “shallow rationalism” and instead being shaken by a “deep stirring” of emotion, particularly among young people. She recorded the observation:

“They all want change, and they all want a chance to play a part in that change, but so few have any religious faith, which means that they have few standards by which to judge between falsehood and truth in revolutionary movements.”

In a recent report, published by the Jo Cox Foundation, increasing the public’s “political literacy” was highlighted as a key response to prevent the outbreaks of abuse, intimidation and violence towards elected officials. As any educator will tell you, literacy is a two-way street – it includes not only the “shallow rationalism” of knowing information, or knowing where to access information, but also the ability to communicate that information effectively to others. Such communication comes from a much deeper, embodied kind of knowing, one which requires one to have assimilated knowledge and worked with it, feeling its malleability, and testing its apparent truth-claims against an internal standard of what is true and false, or right and wrong.

For Buller, this internal standard was inextricably linked to faith. To the end of her life, she remained open minded as to what form this faith might take, albeit her own religious practice was firmly Christian. Cumberland Lodge, the educational charity she set up to promote her aims, was from the start open to those of all faiths and none, and she warmly welcomed dialogue between those of different faith groups, including atheism. But in 1943, as Amy Buller looked with hope towards the prospect of a post-war Europe, she summed up the political landscape as follows:

We are now faced with the greater task of bringing healing to the nations, including our own, I am convinced this cannot be done without a faith in God adequate to the tremendous task of reconstruction.

Given Amy Buller’s open-mindedness, one can read the word “God” in this statement its broadest possible sense, as referring to whatever moral compass one takes as an internal standard of what is true and false, or right and wrong. But the point remains that the political will is therefore not a matter of rational thought, or not only of that, but is an expression of feelings and instincts that run far, far deeper.