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.

Article

Comment

21 June 2024

4 min read

It's our mistakes that make us human

What we learn distinguishes us from tech.

Silvianne Aspray

Silvianne Aspray is a theologian and postdoctoral fellow at the University of Cambridge.

A man staring at a laptop grimmaces and holds his hands to his head.

Francisco De Legarreta C. on Unsplash.

The distinction between technology and human beings has become blurry: AI seems to be able to listen, answer our questions, even respond to our feelings. It becomes increasingly easy to confuse machines with humans. In this situation, it is increasingly important to ask: What makes us human, in distinction from machines? There are many answers to this question, but for now I would like to focus on just one aspect of what I think is distinctively human: As human beings, we live and learn in time.

To be human means to be intrinsically temporal. We live in time and are oriented towards a future good. We are learning animals, and our learning is bound up with the taking of time. When we learn to know or to do something, we necessarily make mistakes, and we take practice. But keeping in view something we desire – a future good – we keep going.

Let’s take the example of language. We acquire language in community over time. Toddlers make all sorts of hilarious mistakes when they first try to talk, and it takes them a long time even to get single words right, let alone to try and form sentences. But they keep trying, and they eventually learn. The same goes with love: Knowing how to love our family or our neighbours near and far is not something we are good at instantly. It is not the sort of learning where you absorb a piece of information and then you ‘get’ it. No, we learn it over time, we imitate others, we practice and even when we have learned, in the abstract, what it is to be loving, we keep getting it wrong.

This, too, is part of what it means to be human: to make mistakes. Not the sort of mistakes machines make, when they classify some information wrongly, for instance, but the very human mistake of falling short of your own ideal. Of striving towards something you desire – happiness, in the broadest of terms – and yet falling short, in your actions, of that very goal. But there’s another very human thing right here: Human beings can also change. They – we – can have a change of heart, be transformed, and at some point in time, actually start to do the right thing – even against all the odds. Statistics of past behaviours, do not always correctly predict future outcomes. Part of being human means that we can be transformed.

Transformation sometimes comes suddenly, when an overwhelming, awe-inspiring experience changes somebody’s life as by a bolt of lightning. Much more commonly, though, such transformation takes time. Through taking up small practices, we can form new habits, gradually acquire virtue, and do the right thing more often than not. This is so human: We are anything but perfect. As Christians would say: We have a tendency to entangle ourselves in the mess of sin and guilt. But we also bear the image of the Holy One who made us, and by the grace and favour of that One, we are not forever stuck in the mess. We are redeemed: are given the strength to keep trying, despite the mistakes we make, and given the grace to acquire virtue and become better people over time. All of this to say that being human means to live in time, and to learn in time.

So, this is a real difference between human beings and machines: Human beings can, and do strive toward a future good.

Now compare this to the most complex of machines. We say that AI is able to “learn”. But what does it mean to learn, for AI? Machine learning is usually categorized into supervised learning, unsupervised and self-supervised learning. Supervised learning means that a model is trained for a specific task based on correctly labelled data. For instance, if a model is to predict whether a mammogram image contains a cancerous tumour, it is given many example images which are correctly classed as ‘contains cancer’ or ‘does not contain cancer’. That way, it is “taught” to recognise cancer in unlabelled mammograms. Unsupervised learning is different. Here, the system looks for patterns in the dataset it is given. It clusters and groups data without relying on predefined labels. Self-supervised learning uses both methods: Here, the system uses parts of the data itself as a kind of label – such as, for instance, predicting the upper half of an image from its lower half, or the next word in a given text. This is the predominant paradigm for how contemporary large-scale AI models “learn”.

In each case, AI’s learning is necessarily based on data sets. Learning happens with reference to pre-given data, and in that sense with reference to the past. It may look like such models can consider the future, and have future goals, but only insofar as they have picked up patterns in past data, which they use to predict future patterns – as if the future was nothing but a repetition of the past.

So this is a real difference between human beings and machines: Human beings can, and do strive toward a future good. Machines, by contrast, are always oriented towards the past of the data that was fed to them. Human beings are intrinsically temporal beings, whereas machines are defined by temporality only in a very limited sense: it takes time to upload data, and for the data to be processed, for instance. Time, for machines, is nothing but an extension of the past, whereas for human beings, it is an invitation to and the possibility for being transformed for the sake of a future good. We, human beings, are intrinsically temporal, living in time towards a future good – which machines do not.

In the face of new technologies we need a sharpened sense for the strange and awe-inspiring species that is the human race, and cultivate a new sense of wonder about humanity itself.