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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Psychology

12 July 2024

7 min read

How to get the best time out of your downtime

The joys and perils of taking time out for summer holidays.

Roger Bretherton

Roger Bretherton is Associate Professor of Psychology, at the University of Lincoln. He is a UK accredited Clinical Psychologist.

A pair of sunglasses beside a swimming pool.

Jakob Owens on Unsplash.

For the first few days of any summer holiday there seems to be something wrong with my brain. Having looked forward for months to the moment when I can finally down tools and get some rest, having yearned for weeks to be free of the relentless schedule of emails and meetings, the moment finally arrives and I, well… hate it. I’ve wanted to stop for ages and then when I get the chance, I don’t want to. The flywheel momentum of the to-do list somehow carries over into the holiday and turns the first few days into an obsessive nightmare of drivenness.

This usually manifests in the agitation of wanting to rest while being unable to do so. My schedule says stop but my mind hasn’t got the memo. Instead of gently sculling across the pool, I’m swimming time trials through an obstacle course of inflatable beds and dayglo sea creatures. My family is quick to remind me that the languid currents of the pool were designed for relaxation, not for achieving a personal best. ‘It’s called the lazy river, Dad, not Verstappen at the Nürburgring.’ It makes me laugh, but it doesn’t make me stop. Nor does it stop them shouting things like ‘He’s taking the apex’, and ‘Dad’s got DRS’ from their sun loungers every time I sluice past.

In the old days, psychiatrists used to call it the Sunday Neurosis, the mild state of agitated low mood that afflicted people on their day off. The inescapable feeling that we should be doing something on days when there is nothing to do. The realisation that we’re not quite sure who we are when we are freed from the daily demands we can easily resent. I don’t know what you have planned for the summer- a beach party in the Bahamas or an Airbnb in Bridlington or the classic post-Covid staycation- but if you’re planning to take a break of any kind there are a few things you should perhaps keep in mind to make the best of it.

If we must work full throttle to the final hour – we may have to accept that we’ll spend the first few days on holiday getting used to being on holiday.

First. Slow down slowly.

We have a tendency to think that life can change at the speed of thought. Just because our diaries say holiday, doesn’t mean that our bodies are working to the same schedule. The autonomic nervous system that governs our state of physiological arousal largely operates automatically. It isn’t synched to our Outlook calendar and can’t deliver relaxation on demand, no matter how much we would like it to. Psychotherapist Deb Dana likens changing our state of physiological arousal to taking a lift down a few floors. It takes time to move from a highly active state, to a more relaxed and connected way of being. It doesn’t happen at the flick of a switch and we only agitate ourselves more thinking it should. She says we should befriend our nervous system. Instead of impatiently asking ourselves why we aren’t more relaxed, we should simply ask whether we need to be this agitated right now. And if we don’t, accept that it may take us some time to adapt to a less demanding environment.

When it comes to holidays, this suggests we should allow ourselves some time to acclimatise. Our bodies don’t automatically relax the moment they hit the beach, or hike the mountains, or lie under canvas - they need some time. We can do this before the holiday starts, by slowly decelerating as time off approaches. Like a car approaching a junction, if we want to stop smoothly, we might want to hit the brakes long before we reach the stop sign. And if we can’t do that – if we must work full throttle to the final hour – we may have to accept that we’ll spend the first few days on holiday getting used to being on holiday. It may not make us a pleasure to be with, but we can at least understand that it’s just how our bodies work. We are not droids, there isn’t an off switch on the back of our heads.

On holiday, we can take time to savour the experience of living- to be in our bodies, not just use them.

Second, get into your body (and out of your mind).

There’s a reason people spend so much time on holiday exercising their bodies: surfing, climbing, walking, riding. And weird stuff too, that you’d never dream of doing at home. One time in Normandy we booked a hand-pumped locomotive and huffed/puffed our way up and down a railway line for an afternoon. If I didn’t have the blisters to prove it, I’d think I’d dreamed that. Why do we do these things? Because it feels good to be aware of our bodies. Even my laps around the lazy river had a certain logic to them.

Many of us spend most of our time in disembodied thought. We can sometimes feel like the involuntary participants in a workplace time and motion study, in which worth is measured by output. It doesn’t matter where you work – home, school, office, a boat, the woods – sooner or later a spreadsheet will find you. You can run, but you cannot hide your data. And the impact this has on us is that we tend to be more aware of whether we have hit our targets than we are of the toll these targets take on our bodily wellbeing. Just recently I was asked to support a management team going through a stressful restructuring. One guy claimed he didn’t feel the stress of it- he just got on with the job. But when I sympathetically suggested he might be paying for it with his body, the litany of physical ailments he produced sounded like the list of side effects in a 1980s pharmaceutical commercial. He didn’t think he was stressed, but his body kept the score.

Let’s face it, going on holiday itself is stressful. It’s ranked 42 on the Holmes-Rahe Life Stress Inventory, just above ‘minor violations of the law’. Apparently packing for Marbella is more stressful than being pulled over by the cops. But it’s worth it if it creates a space in which we can de-stress, a space in which we can remember that we have a body, a body that needs to be looked after. Of all the benefits of bodily awareness – the positive sense of how our body feels, not the crippling consciousness of how it looks – perhaps the greatest is its capacity to turn off the hyperactive judgement of our minds. On holiday, we can take time to savour the experience of living- to be in our bodies, not just use them.

If we are defined by our output, who do we become when our output drops to zero?

Third. Make time to connect.

What happens when we slow down and learn to live in our bodies again? We become open to connection: socially, emotionally, even spiritually. Back to Deb Dana. She notes that when we take that slow elevator down from the souped-up state of busyness to a more relaxed and open state of mind, we activate the ventral vagal nervous system. She calls it our ‘home away from home’- which seems especially apt for being on holiday. In this state we are happier to be seen by others and therefore to be in relationship with them. Whether it’s a conversation while walking, or an evening card-game, or a meal together, all of them offer a chance for us to dwell in our home away from home in connection with others.

One of the things that can keep us so obsessively busy, is that we are not always sure who we would be if we stopped. We’re not certain we have a right to exist when we’re not being productive. If we are defined by our output, who do we become when our output drops to zero? This is why for thousands of years the practice of rest has been enshrined in spiritual practices. Without space to detach ourselves from the hectic pace of life we will inevitably confuse who we are with what we do. The Judeo-Christian tradition called it sabbath, not just a day of rest, but a way of being in which there is nothing left to prove. Holidays can offer us that opportunity, if we are willing to take it. Because after all what do we call someone who becomes more relaxed and embodied and connected? I think: more human.