Article
Assisted dying
Comment
Death & life
Politics
5 min read

The careless conflation of independence, autonomy and dignity

As Jersey begins to legalise assisted dying, there’s keyword confusion.
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 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 dictionary 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
Identity
Nationalism
5 min read

Which nation are you flying the flag for?

Flag raisings, Ed Sheeran, and my split national identity

Juila is a writer and social justice advocate. 

A Union Jack is draped over a railing, next to a red flag saying Jesus.
A flag demonstration, Portsmouth.
TikTok.

Flags are flying from lamp posts around England. It’s newsworthy here – and yet reports barely note that for those of us from Northern Ireland, we know something of this. A couple of weeks ago, the backlash was loud when Ed Sheeran declared himself ‘culturally Irish’, attributing greater significance to his family’s heritage than being born and raised in England. When it comes to signs of identity, things can quickly get personal. 

In my family – Northern Irish mother, English father, two daughters born in London but most of our childhood spent living just outside Belfast – we’ve been known to debate points to tot up our national identities over the dinner table. Does a place of birth outweigh the school years? When does formation finish – on turning 18 or do the months away at university count for anything? Does it matter how our mixed DNA actually expresses in our hair, our eyes, our stature?  

It’s a game and it’s our deeply felt reality. It’s the years spent with my schoolmates teaching me to correctly say ‘how now brown cow’ – and the arrival in England to find people couldn’t understand me saying my own name. It’s the stomach churn I still feel when I see flags flying, having grown up in a country where banners signal who is in – and therefore who is out. It touches on the questions of belonging and home.  

Irishness seems to travel well. The popularity of the island’s artists and art (from Paul Mescal to Derry Girls) are all signifiers of this cultural moment. But being Irish has always carried more cachet when I’ve been abroad, and I confess that when it has suited, I have led with my more ‘palatable’ half (or quarter or… the family maths is still up for debate). It’s convenient – but there’s also a discomfort in the enduring appeal of ‘Irishness’ outside of the island. It’s an ‘otherness’ that evokes intrigue and warmth, rather than fear. Difference that is more than acceptable, sometimes desirable. Distinct enough to be interesting but unthreatening for often being associated with white skin. 

Underneath the light-hearted arguments of our dinner table is a question of formation. Ed Sheeran attributes his sense of being Irish to the things that he feels have shaped him. It’s in being away from Belfast, living in England, that that I have seen more clearly the ways that Irishness has formed me. Watching Derry Girls with my English husband I freely laughed at what I assumed were universal jokes, only to have to hit pause and explain them. The show unearthed memories – not bad, just not often recalled – of Bill Clinton’s historic visit and the ‘across the barricades’ style gathering of primary schools from different sides of the community. 

Signs and symbols matter. I recently rewatched an episode of tv show, The West Wing, in which the US flag may – or may not – have been burned as part of a trick by magicians Penn and Teller. A media maelstrom follows. Whether or not the flag burned matters, as does the symbolism of this act taking place in the White House, itself an emblem of national identity and power. 

Reflecting on the news, I find myself thinking about the signs of a different kind of kingdom, one that transgresses national borders. In the Bible there's the story of one man who died once for all the world. And in dying, he brought forth his kingdom – one that crosses boundary lines to be truly global. The signs of this kingdom are not division or disconnection but peace and justice, joy and comfort, healing and presence. 

This is not about homogenisation. It’s not about the erosion of cultures, but about the beauty of all represented. As Harvey Kwiyani, a theologian from Malawi, puts it: “We are all welcome to God’s kingdom with our unique cultures. Being in the kingdom of God does not erase our cultural differences… The kingdom of God finds its fullest expression in intercultural mutuality. It is a multicultural kingdom.” The kingdom of God in all its richness – that’s a tempting proposition.  

It’s easy to see that we aren’t living in the fullness of this yet. But the world is not a static place. One metaphor used to describe the kingdom of God is yeast; living cultures filling the dough, making it rise. This is an image that is expansive, generous. The kingdom isn’t wholly realised yet, but we can see more and more of it. 

And like the yeast, we have a role to play in culture changing. As Graham Tomlin wrote following debates about ‘Englishness’, belonging to the kingdom of God means we have an identity not defined by where we live. Being part of this kingdom, we also become active participants in it. Formation is not just about us; we get to play an intentional role in the formation of a kinder world, in the coming of God’s kingdom. In the midst of fear and uncertainty, our ability to engage in such life-giving action offers a concrete hope.   

This is not a defensive position, but a brokering one. The kingdom is bigger than our individual lives, churches or communities; recognising this helps us to break out of a fortress mentality. So far, this century has been marked by fortification. As well as the raising of flags, there have also been walls. At the end of the second world war there were fewer than five border walls; there are now more than 70, most of them built in the last two decades. But the kingdom of God offers a view of home that is not about defence, not about perimeters, or even places. It’s a relationship with God, who made and sustains this world, who crosses the divide to meet each of us. In meeting him, we can partner together in seeing more of his kingdom on this earth.  

Anthropologist Andrew Shyrock defines sovereignty as “manifest in the ability to act as host”. Or to ground it in the day to day: to be able to offer a cup of tea. Perhaps some of the anger about Ed Sheeran’s claim is because of what it seems to either take or reject, pulling towards one nation while turning a back to another. Belonging to the kingdom of God invites us to think beyond what we can have to how we can intentionally serve. It has room to honour heritage and at the same time, it bends forward towards eternity. In the day to day, I find this a comfort: to see formation as not just about the past, but also the power of creative act after creative act in shaping the world that’s coming. 

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