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.

Essay

Comment

Politics

War & peace

30 August 2024

7 min read

What it takes to travel from ceasefire to peace

With Bertie Ahern, Kevin Hargaden explores an unlikely journey.

Kevin Hargaden

Kevin is a social theologian studying ethics and economics.

A TV graphic labelled 'ceasefire' lists bullet points

How the news was reported in 1994.

RTE.

August 31st marks the thirtieth anniversary of the historic IRA ceasefire. After decades of effective civil war in Northern Ireland, on this day in 1994, the nationalist paramilitary force announced “the complete cessation of military operations” and declared that they looked forward to a just and lasting settlement with “a spirit of determination and confidence”. While not without interruptions, that ceasefire has led to more than just a cessation of conflict. While still fragile, Northern Ireland has a functioning parliament, closer ties than ever with the Republic of Ireland, and the dissident threat – still present – is marginalised.

One of the remarkable elements of that day at the end of summer 1994 was how unlikely it seemed just a year before. The intensity of “The Troubles”, as the conflict is called, varied over the years but a series of atrocities in 1993 left an already traumatised population in a state of desperation. In March of that year, the IRA exploded bombs in the market town of Warrington. This callous attack clearly sought to strike terror into the hearts of English civilians – people who had no real connection to whatever injustices had been inflicted on the nationalist communities of Northern Ireland. Two children, Jonathan Ball and Tim Parry, were killed and almost sixty people were injured.

Another IRA bombing, in October of that year, caused outrage and disgust across Britain and Ireland. Again, hitting a civilian population, the Shankill Road bombing had been intended to target Loyalist leaders but ended up devastating a fishmongers. Ten people were killed.

Brutal responses followed from the Loyalist side. Five days after the Warrington bomb, the Ulster Defence Association murdered four construction workers and a week after the Shankill Road bombing the same organisation descended upon a Halloween party held in a bar in rural Derry, killing 8 people and leaving 12 with dire injuries.

Along with many other atrocities, the year ended with most people on the island dreading another generation of pointless violence. But below the surface, intense grassroots efforts and official negotiations were beginning to bear fruit.

The viewer is bound to see the peace process that emerged as a kind of miracle. How could forgiveness reign in the face of such savagery? How can a society build a future out of the wreckage of such a past?

This story is told vividly in the BBC documentary Once Upon a Time in Northern Ireland. Spread across five episodes, the show does not intend to offer an encyclopaedic analysis of how the Troubles emerged. Instead, it focusses on the experiences of the ordinary people embroiled – whether intentionally or not – in the conflict. The effect is deeply moving, even overwhelming at times.

So often, our culture engages with war and conflict as abstract concepts to be debated. Even in the context of active, live battle, we are typically presented with “talking heads” offering expert opinion. But in Once Upon a Time in Northern Ireland you get to hear from the people who planned the attack, or who conducted the arrests, or who were just trying to buy some fish for dinner when a bomb exploded in the shop. This direct testimony from those were caught up in the Troubles allows the viewer a visceral understanding of what is at stake, without having to understand the centuries of colonialism, conflict, and oppression that generated the civil war. That human trauma, that is glimpsed in great poetry or felt as an echo in a folk song is captured in this series directed by the award-winning James Bluemel.

There is a stubborn misunderstanding that the Northern Irish conflict was “Catholics against Protestants”. Once Upon a Time in Northern Ireland disposes of this myth, if in part by showing how those two groups were never distinct. It was a complex conflict fuelled by land and ideology, traumatic history and conflicting cultures. Religion was a component of course, but expressed through the lens of sectarianism, the almost racial animosity that grew up between the opposing tribes, the marker that differentiated them. When one man, named Michael, is shown tending gently to the racing pigeons he keeps, the effect is incongruous in the extreme because his story is one of unimaginable despair.

He was raised Catholic; his mother was Protestant. She had ten children. And one day, two women showed up at their home and took his mother away and she never returned. The IRA killed her. It wasn’t because of her views on Papal primacy or biblical authority. Something even more absurd and terrifying was at work here, a hatred that at some point did not even need justification.

The consequences of each callous and brutal attack rippled outwards, affecting not just the victims but their loved ones and then their community. By the end of the five episodes the viewer is bound to see the peace process that emerged as a kind of miracle. How could forgiveness reign in the face of such savagery? How can a society build a future out of the wreckage of such a past?

That was their baseline assumption throughout – no one at the table was “happy with the fact that thousands of people had been killed and maimed.”

This exposes one of the limitations of the format of the series. By placing the perspectives of ordinary people at the centre of the narrative, profound truths are exposed. But the mundane details of how the peace process developed – why it was the IRA agreed to a ceasefire and how things developed from there to the Good Friday Agreement and the years since – are unaddressed. Perhaps a sequel is required where the politicians and diplomats who made that possible are given the chance to tell that story?

One of the undoubted architects of peace in Northern Ireland is Bertie Ahern, who was the Taoiseach (Prime Minister) of the Republic of Ireland from 1997-2008. I sat down with him to do just that – to hear his recollections of the process that brought about peace. Since his youth, he had always taken a keen interest in Northern Ireland – “I took a particular interest in the Civil Rights movement when we were in school; that was before it got into the violence.” Raised in a Republican family just north of Dublin city centre, once the Troubles began, it was hard “not to be subsumed into everything that was happening on the island.” As he became a political leader, he was keenly aware of how the violent conflict exacerbated underlying problems – even his vision for economic regeneration in the Republic was blocked because “part of the reason that it was difficult to get investment and to get people to come here was the Troubles.”

As he remembers the process, it would be misleading to think it popped out of nowhere in the 1990s. There had been attempts through the years, notably with the Sunningdale Agreement in 1973 and the Anglo-Irish Agreement of 1985, but also through less publicised conversations between the peacemakers and paramilitaries, like the conversations led by Fr Gerry Reynolds at Clonard Monastery – which began to generate movement. He attributes the ceasefire to the Downing Street Declaration that was orchestrated by the British Prime-minister John Major and Ahern’s then boss, Taoiseach Albert Reynolds, on December 15, 1993. That showed a serious willingness from London to engage, and the 1994 ceasefire was the result.

But when the ceasefire broke down in 1996, all that work dissipated. “That was a disaster, really.” With the election of Tony Blair, Ahern suggested they “take it up again”. With a concerted focus – “I was nearly doing the Northern stuff full-time” – progress was restored. He remembers that the negotiations involved ten different parties, including the British and Irish governments and the active and influential participation from the American government and “went on practically non-stop from September 1997 to Good Friday 1998.” The strategy sought to be as inclusive as possible – “we would try and get everyone in” – and “to be as comprehensive on the issues” as possible, so that no issue was off the table. Patience and resilience were central. Although there was “a huge amount of conversation and talks up to Christmas, it didn’t really gather momentum until February.”

With the “totality of all the issues out on the table”, the dialogues began to bear fruit. How draconian legislation might be rolled back, how paramilitary prisoners could be released, how demilitarization would proceed and how the police could be reformed. He remembers that negotiations on that question – the reform of the corrupt Royal Ulster Constabulary police force – went on deep into the Good Friday night, April 10th. When an obstacle appeared, the London and Dublin governments reminded people of the goal of stopping the violence. That was their baseline assumption throughout – no one at the table was “happy with the fact that thousands of people had been killed and maimed.” The second guiding principle was that “you have to try to treat everyone with dignity, regardless of what views they have.” And slowly, rapport was built up between people who had been combatants.

When the agreement was finalised, a kind of euphoria followed. “That week we were just at it night and day; we had been at it night and day since March.” But the celebrations, as intense as they were, did not linger. The agreement had to be passed by popular referendum in both the North and the Republic of Ireland. And the work continued even after that. Ahern notes that it took years to achieve an agreement “and then another ten years to implement it”.

But the effort was undeniably worth it. “I think the big success of the Good Friday Agreement was that the Troubles have by and large ended.” And the story of how that happens traces back to a cassette tape released in August 1994 announcing the IRA ceasefire.