Article

Assisted dying

Comment

Life & Death

23 May 2024

5 min read

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

Culture

Politics

9 July 2024

6 min read

When America presses in on you

A returning American feels the heat generated by contesting ‘realities'.

Jared Stacy

Jared Stacy holds a Theological Ethics PhD from the University of Aberdeen. His research focuses conspiracy theory, politics, and evangelicalism.

A runner passes a church and a flag in an America suburb, under billowing clouds.

Nick Jones/Midjourney.ai.

There’s a man. Running. My eyes snap into focus. Time slows - I catch his pace. Then, my eyes start widening. An odd feeling. Being forced into it. Seconds stretched out into minutes. Taking in more, looking for more, looking down that sidewalk, on a street corner in New Jersey.

Before? I was sitting there. In the backseat of my Uber. Winding our way through New Jersey. And I’m sitting there, tired, mindlessly scrolling my phone until that moment. He’s there running.

And I see him. T-shirt. Running shorts. And I’m sitting. And—a nervous flash—he’s running. Why?

And my eyes adjust, widening, scanning, checking detail, and I’m almost seized. My mind shaking itself, coming online, no more automation. My consciousness catches up: “you’re in America,” I tell myself.

Right. I’m not in Scotland. And that man is running. Here in New Jersey. In America. And I’m talking back to myself in this silent car. I’m watching him run. I’m asking why am I slowing this down? And—it flashes—“running from what?”

And I catch up to myself. To what I was trying to say, that people in America run from shooters, too. A wave crashing, sitting in the back of the Uber, and look. Now I’m really looking. Not forced. But naming. There’s other pedestrians passing him, walking. Slowing. On the other side of the street— no fast movement. No screaming. No pops.

I start breathing. I didn’t know I stopped. He’s out jogging. The automated safety check ends. The tranquility of tyranny resumes. I’m sitting in the back of an Uber. I make a note. Be more alert at the train station.

—

People ask me how the relocation back to America has been. And I don’t know what to tell them. There’s a wide gap between the visceral sense of it all pressing in on you, and more common—but also abstract—analysis.

The experience of coming back has been oddly particular. I lived in Scotland for three years, and most of it was spent studying America. From that distance, the broad strokes of American life, the larger trajectories and dangers of our shared political decisions and religious extremism, well, they’re a bit clearer.

But coming back, America presses in on you. And the only way of talking about that, maybe, is specificity. Kerouac was always good at articulating this. His America wasn’t the rise of the military industrial complex in the 50s. It was the road, the gas station on the way from Denver, it was jazz, the dim doorways of San Francisco bars. I’m thinking of Kerouac, but also Langston Hughes. Poets and artists who in their own time, held a mirror up to America, helped us move from the “I” to the “we” as Steinbeck said.

We’re all asking a version of “what’s wrong in America?” (And, do keep asking.) But to ask that question often assumes the broadest strokes, the ones that are most clear from a distance. Which means they are, in one at the same time, the most abstract.

These realities are everywhere, and no where. They are the air we breathe. They appear to the privileged as “logical” and to the powerless as “inevitable.”

Asking after democracy, after the election, and the increasingly nebulous “the church” — I’m convinced that answering “what’s wrong in America?” in the biggest of terms is leading me to (wrongly) believe that responsibility lies among the gargantuan free-floating concepts which we use to narrate our world. As if solving the “crisis of democracy” is a conceptual problem. When in reality, it is concrete, and involves more than coalition building or political activism.

Why more? Because the choices Americans have made over the last 10 years originate from imaginations which limits the scope and scale of what is possible. This is what I mean by “America presses in on you.”

Coming back to America has made this clear. I’m more aware than ever that we can produce good answers and generate compelling analysis about America without ever asking in what way these answers or analysis are sharp enough, concrete enough to puncture the bubbles of social reality in which people choose to live and in some cases are forced to live.

These realities are everywhere, and no where. They are the air we breathe. They appear to the privileged as “logical” and to the powerless as “inevitable.” They press in on us all in their own way.

In some cases, they dull our senses. We say, “as long as our Amazon deliveries continue, as long as the streaming services work.” In some cases, they don’t just press in on us, but press down and perpetuate injustice. As Dietrich Bonhoeffer asked, “where are the responsible ones?”

The visceral shock of return is ongoing. And it hits me in strange ways, on Uber rides and in worship. American life is everywhere and I’m seeing it with different eyes.

Do I care about democratic machinery? Yes. Am I concerned about whether or not the church is, in fact, the church, and not a gear in a partisan machine? Yes. But I’m increasingly convinced that responsible living in the American situation becomes most clear, most evident as we consider the large in terms of the small.

Responsibility emerges with attention paid to the concrete and intimate. January 6 is the subject of my dissertation. But before that, in the months leading up to January 6, I was a pastor just 40 miles from DC. For me, January 6 was a local event. That particularity, that specificity, is a window into a concrete responsibility.

And now, back in this same community, I found myself distracted in a church this weekend. The man in front of me raised his hands in worship, revealing a revolver hanging on his belt. What America is this? But also, what Christianity is this?

The visceral shock of return is ongoing. And it hits me in strange ways, on Uber rides and in worship. American life is everywhere and I’m seeing it with different eyes. And I wonder what it will take to break the spell of our most cherished illusions, of a certain type of freedom — one that tells us it is Christian to raise our hand in surrender to a god who we say is loving enough to save the world, but seemingly not strong enough to deliver us from our evil.

In the end, perhaps it’s best to say that it’s been proof of a good ruining. After all, we’ve experienced nothing short of a conversion, a move closer towards peace, towards hope, that unsettles all our strategies of security and comfort underwritten by violence and oppression. This is the kingdom of Heaven. Something Jesus announced that continues to unsettle and disrupt the likes of T.S. Eliot who put it well in Journey of the Magi:

We returned to our places, these

Kingdoms,

But no longer at ease here, in the old

dispensation,

With an alien people clutching their gods

I should be glad of another death.