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Assisted dying
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Life & Death
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 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. 

Review
Belief
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Life & Death
7 min read

Nick Cave’s Wild God challenges a too comfortable culture

Eavesdrop on profound discomfort and raw wonder.
A singer, wearing headphones, turns from a microphone in front of him.
Listen with Nick.
nickcave.com

In the fourteenth and fifteenth centuries, there lived an anonymous mystic who we’ve since come to know as Julian of Norwich. After coming chillingly close to death at the age of thirty, she spent the subsequent decades of her life in a small side room of St Julian of Norwich church (the inspiration behind her pseudonym), speaking to people only through windows and writing masterfully about her supernatural visions of God. 

Her anonymity, modesty, and creativity meant that she was free to write about God without the pressure of being theologically or doctrinally ‘correct’. She wasn’t too interested in making her writing academically bulletproof, nor was she too bothered with institutional rightness.  

Rather, she experienced, and she wrote. She pondered and she wrote. She suffered and she wrote. She rejoiced and she wrote.  

She was utterly captivated by God, and that meant that she was free.  

I think that Nick Cave is free, too.   

His latest album reminds me of Julian of Norwich’s work; baffling, subversive, mystical, rooted in a truth that can’t be proven. A truth he wouldn’t be interested in proving, anyway. It, too, swerves ‘rightness’. It, too, refuses to dilute the oddness of faith. It, too, is irresistibly intense. I pressed ‘play’ at around 8:03am this morning, assuming that this album would be the soundtrack to my mundane morning. But two songs in, I found myself sitting on my kitchen floor with my coffee, a notebook, and the album turned up to a volume that would have justifiably annoyed the neighbours.  

This is not a casual album. Any true Nick Cave fan would scold me for ever expecting it to be. 

The album is a ten-track-long ode to a Wild God who has met Nick in the darkest of places. Places, I’m sure, he never wanted to go. Places, I’m sure, he will never fully leave. Such a wild God is a challenge to a culture that has enthroned comfort. We’re too easily spooked. But Cave, through a combination of circumstance and intentionality, appears to have entirely shunned comfort. And so, he’s in prime position to introduce us to a God who will confound us.  

Julian of Norwich’s book and Nick Cave’s album are centuries apart – yet, somehow, it feels as though they have been made from the same materials: profound discomfort and raw wonder. 

Suddenly, you’re reminded that you’re eavesdropping on a man who has lost his son, conversing with a God who lost his too. 

This is Cave’s eighteenth album with the Bad Seeds. Together, they have created a soundscape to get lost in, a changeable climate controlled by their instruments: you get caught up in a cyclone during the title track, the cymbals crash like waves on the shore in ‘The Final Rescue Attempt’, you can hear the gentle droplets of rain fall in ‘Frogs’, the strings somehow sound like a sunset in ‘As The Waters Cover The Sea’.   

It’s music that baffles your senses. 

And then there are the stories that the songs are telling.  

The album opens mid-way through a bar, its first song – ‘Song of the Lake’ - sounds as if it was playing before you hit play. In 2015, Nick and his wife Susie lost their teenage son. In 2022, Nick lost another son. The last two albums offered up by Nick Cave and the Bad Seeds – Skeleton Tree and Ghosteen – they have an address, and the address is grief. They’re laced with palpable agony. And so, beginning this album mid-way through a bar, it’s as if Nick is telling us that we’re picking up a conversation where we left off in 2019. This album wouldn’t exist if the previous two didn’t exist.  

He uses the opening song to remind us of the tragic circumstances in which he lost his teenage son, Arthur, by referencing the nursery rhyme character, Humpty Dumpty – who, of course, ‘had a great fall’. Nick quotes, ‘… and all the king's horses and all the…’ before cutting himself off with ‘… oh never mind. Never mind.’ 

What’s the meaning of this recurring ‘never mind’? Is it agony or acceptance? Maybe it’s both. Maybe it’s neither. Maybe Nick, as usual, doesn’t want to be too knowable.  

Some of his thoughts feel finished and firm, others feel unexplored and new – like we’re hearing them at the same time that Nick is. On occasion it feels as though he’s teaching us something, on other occasions, he’s the one asking the questions. It’s about him, and then it’s not about him. It is intensely personal and then it’s cosmically minded. It’s sturdy, then it’s fragile. It’s from the point of view of a deity, then it’s from the perspective of a frog in his pocket.  

It is pretty uncontainable.  

But the song that my mind seems to have gotten snagged on is ‘Joy’, which sits about a quarter of the way through the album. Again, he begins the song by telling us how he ‘woke up this morning with the blues all around my head… I felt like someone in my family is dead,’ he speaks of his ‘pain and yearning sorrow’ – all of which hits you in the stomach, because such lines are wholly unexpected in a song entitled ‘Joy’.  

You could read a 100,000-word long thesis on the theology of joy. Or you could just listen to this song. I think it would teach you everything you need to know.  

The way Nick chooses to sign it off is to overtly tell us so. His goodbye is a direction, his epilogue is an invitation. 

Despite the references to his grief, Nick recently shared that he nearly titled the album ‘Joy’. And I get why. If you think of joy as some kind of light and fluffy thing, you might not spot it. But if you, like Nick and his band of Bad Seeds, perceive joy to be something that can hold tension, confusion, and even sorrow – you will see that it is all over this project. As Nick has already taught us, faith and hope can be found amid carnage. And Nick’s new(ish)-found faith has quite obviously turned him upside down.  

His wild God has clearly swept him off his feet.  

The remaining songs on the album - the ones that I don’t have the wordcount to do justice - they take God/death/life, and they ponder them from every angle. There is a childlike wonder to this album, a pure kind of excitement. The kind that you'd think would be irreconcilable with the realities of grief but is somehow able to sit right alongside it. Nick isn’t trying to explain the God that he has found, or the ‘conversion’ he’s experienced – he’s just celebrating it, and inviting us all to listen.  

He's simply loving God and enjoying being loved right back. It really is all very ‘Julian of Norwich-esque’. It will offend you if you try too hard to put it into a neat box.  

But then there’s the last song, which is where I’ll bring this gush-a-thon to an end. It is a hymn. Like, an actual, albeit tweaked, hymn – the last song is a rendition of ‘As the Waters Cover the Sea’.  

All of a sudden, there’s a gear change to grapple with. Nick is placing himself in a church, he’s tying himself to a particular religious tradition, he’s joining a particular community and affiliating with a particular history. It turns out the God of whom he speaks is not abstract, he’s the Christian God. You’re reminded that you’ve been eavesdropping on a man who has lost his son, conversing with a God who lost his too. The lyrics have been hinting at this all the way through the album, but the way Nick chooses to sign it off is to overtly tell us so. His goodbye is a direction, his epilogue is an invitation. He is basically saying -

If you’re intrigued by the Wild God, here is where precisely I have found him…  

And this kind of religious specificity being used to tie up an album so full of metaphor and mystery. An album I thought I had worked out, an artist I thought I had finally cracked, a message I thought I had deciphered… 

… Oh, never mind. Never mind.