Article
Assisted dying
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Death & life
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. 

Essay
Attention
Comment
Feminism
5 min read

Sarah Everard: she was 'exactly like us'

An anniversary of anguish deserves the miracle of our attention.
A woman looks down slightly, smiling.
Sarah Everard.
BBC/Everard Family.

This week, three years ago, we’d been shut in our homes for nearly a year and things were anything but normal. I don’t know about you, but when I think back to those locked-down days, it’s all a bit of a haze, those weird weeks tend to blur into one.  

Except this week, that is. This week, three years ago, was a wholly different story.  

We, the public, had just learnt that Sarah Everard, a thirty-three-year-old woman in South London, had been abducted, raped and murdered by Wayne Couzens, a serving police officer in the Metropolitan Police. And the news of this heinous crime took our breath away. Do you remember it? How you felt when you learned what had happened to Sarah?  I can remember the anguish of hundreds of people ringing out from Clapham Common, reaching every corner of the country. I can remember that, legal or not, nothing seemed to quell the outrage that was drawing people to the vigil being held there. All that grief, it had to go somewhere.  

The anger that night was so visceral, it feels like it’s still in the soil of the Common. The fear, so palpable, it still lingers in the air. And at that point, we didn’t even know the half of it. ‘She was just walking home’ - That’s the sentence, isn’t it? The one that haunted those days, weeks, and months.  

Three years on and we’re no closer to coming to terms with what happened. Not really. In the wake of the recent Angioloni Inquiry, which concluded that Wayne Couzens should never have been allowed to become, let alone remain, a police officer, the BBC released a documentary that follows DCI Katherine Goodwin’s story as she led the investigation. From first seeing the bulletin of a missing young woman, to hearing the ‘whole life’ sentence come down on Couzens – viewers are walked through the whole thing, step by step. What led up to Sarah’s death, and what followed it. It’s something that we should all see, even though we’ll immediately wish that we hadn’t.  

Because it would be hard to unsee the grainy footage of Wayne Couzens standing next to a handcuffed Sarah on the side of a busy road, abducting her while his hazard lights flash, all of it so sickeningly hidden in plain sight. It would be harder still to unhear the victim statement from Sarah’s mum, who admitted that every night, right at the time of the abduction, she silently screams ‘don’t get in the car, Sarah. Don’t believe him. Run!’.  

All of it, it’s just so hard to know.  

The details are hard to think about, and harder still not to think about. But that’s the point, I suppose. I remember what philosopher Simone Weil wrote,

that ‘capacity to give one’s attention to a sufferer is a very rare and difficult thing; it is almost a miracle… it is a miracle’.

I’m just not used to a ‘miracle’ making me feel so nauseous. In theory, Weil’s words are beautiful, in reality though – they ache.  

I don’t tend to acquaint a feeling of utter helplessness with the miraculous. Where my understanding runs dry, my answers falter, and my tears flow – those aren’t the places I expect to see anything of any use, spiritual or otherwise. 

But Weil goes on:

‘…it is recognition that the sufferer exists, not only as a unit in a collection, or a specific from the social category labelled ‘unfortunate’, but as a man (or woman), exactly like us, who was one day stamped with a special mark by affliction.’  

Sarah Everard – her memory, as well as the people within whom her memory is most vivid, and her loss most keenly felt – deserve the miracle of our attention. Then, now, and for many years to come. We continue to grieve her, the woman who never made it home, as if we each knew more of her than her name. And that’s a beautiful thing, a human thing, a sacred thing. Because Sarah was more than her name, and she was more than her death. And so, she must be grieved as such, with our eyes fixed on the beauty of who she was, and the tragedy of who she will never be.  

And it’s tricky, because you can’t tidy up lament, can you? There’s no silver-lining, nothing to polish. You can’t put a neat bow on despair or grief. 

And then there’s Weil’s ‘exactly like us’ line to grapple with. And grapple with it, we do. The knowledge that it could have been any of us is ever-present. As a woman, I feel it every single day. If male violence against women is a spectrum - 1 being a wolf-whistle as we walk down the street, and 10 being death – the truth is that most of us will only ever face experiences that sit on the lower end of that scale. And yet, we are ever aware that 10 exists and that we could encounter it at any point. So, we are on the lookout for it. We are alert, always.  

Sarah walked home a specific way that night; not the quickest route, but the best lit.   

That’s what we all do. ‘Exactly like us’, indeed.  

Lament; I suppose that’s what this feeling in my stomach is. And maybe yours too. It’s a feeling that goes beyond the rage I feel toward the monstrous perpetrator, and the institutions that failed to stop him, and so many others. It’s a kind of wordless grief that things are the way they are, agony that we live in a world that hurts this much, despair at how things could have been so different. I felt all this three years ago, when I heard about Sarah’s death. And I felt it last night, when my sister walked home from my house in the dark with her hood up so that she was less distinguishable as a woman walking alone.  

And it’s tricky, because you can’t tidy up lament, can you? There’s no silver-lining, nothing to polish. You can’t put a neat bow on despair or grief, and you can’t pull yourself out of it by your own bootstraps. And that’s not to be defeatist, or to relinquish our responsibility to enact justice and fight for change. On the contrary, lament is rooted in the knowledge that things can be, and should be, better. But to try and find a way to solve the outrage we feel when it comes to the death of Sarah Everard is to completely misunderstand it, and ourselves, and reality. 

Bad things hurt. 

So, although writing this piece has been hard, I’m at least comforted in the knowledge that it was supposed to be a hard piece to write. And that the queasiness I feel and the tears that are threatening my professional resolve are the evidence of some kind of miracle that I don’t fully understand.