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
Justice
Trauma
4 min read

Can life go on after wicked acts of violence?

We can fulfill the law in more ways that just the legal sense.

George is a visiting fellow at the London School of Economics and an Anglican priest.

A montage shows three people, an older man, a young man and young woman.
Ian Coates, Barnaby Webber and Grace O'Malley-Kumar.
Family handout.

It’s an all too human instinct to seek vengeance against psychopathic killers, especially those murderers of children and youngsters. If we’re honest, we can all feel a primal urge to “get our hands on them”, to inflict, in retribution, the pain, death and suffering that they delivered on their victims and their families. 

That must be why, shortly after his sentencing, the murderer of the three little girls at a dance class in Southport - Elsie Dot Stancombe, Alice da Silva Aguiar, Bebe King – was reported to have been beaten to a pulp by fellow prisoners. It went momentarily viral with the help of the likes of former support-actor Laurence Fox, who writes in short sentences because he thinks in them, claiming he’d heard it “on the grapevine”.  

The story was only slightly undermined by such giants of investigative reporting getting the jail where the convicted prisoner is incarcerated entirely wrong. 

It’s a kind of wishful thinking, if a herd can be said to think. It’s also why we have a rule of law in what we aspire to call a civilised country. It’s there to bring such perpetrators to justice, while ensuring that justice isn’t impaired by the wholly understandable desire of victims’ families to tear their killers to pieces and the knuckle-dragging, social-media lynch mob who think they know what justice looks like. 

Hard for anyone to know how to respond to this. It’s perhaps particularly challenging, for fear of being intrusive and trite, to see how a religious faith can respond. But I want to have a go. And to avoid those charges of hand-wringing solipsism, I won’t speak of hope and love and life in this context, which so often feels like throwing a handful of seeds into a raging storm.  

Rather, I think I want to ask what fulfilment of the law might look like. The full 240-page report into the killing In Nottingham in June 2023 by a paranoid schizophrenic of two 19-year-old students, Barnaby Webber and Grace O’Malley-Kumar, and separately a 65-year-old man, Ian Coates, has been published. Not unnaturally, the headline theme has been that the killer “got away with murder” through a series of chaotic failings by the NHS, in its discharges of its patient into the community, in its absent risk management and failures to medicate him adequately. 

Culpability for these crimes is a powerful driving force. But there’s something else going on here. After the report’s publication, the two young victims’ mothers, Sinead O’Malley-Kumar and Emma Webber, went on BBC Radio 4’s Woman’s Hour for an extended interview. And, yes, of course they share a campaigning spirit to change the health system so that this kind of tragedy is less likely to happen again. But Emma said that they’re “not witch-hunting with pitchforks” and Sinead observed with crystal clarity that “systems are made up of people”.  This was about human as well as systemic change. 

The go-to journalistic word here is “dignity” and, yes, these two mothers have it in bucket-loads. But, as I say, there’s something else. Struggling to identify it, I come up with the phrase that life goes on – and not in its platitudinous sense of bucking up and getting on with what’s left to us. There’s a feeling of continuation, not just of ending, dreadful as those endings are for families.  

Asked by interviewer Anita Rani (who, in passing, was first class) what sustained them, where their strength came from, Emma answered in a heartbeat “Barnaby”, adding quickly in a heartbreaking throwaway: “It’s that invisible umbilical cord.” Similarly, Sinead said she was strengthened on a “bad day” by the knowledge that she was “doing it for Grace.” 

They know, absolutely, that they can’t change what happened, but they’re there for each other. And not just these two mothers. Bereaved parents from Southport have been in touch, as they said, in “awful solidarity.” 

A solidarity unconfined to this dreadful cadre of the violently bereaved. When these two mothers visited Nottingham for a vigil for their lost children, they expected “maybe 50” to turn up. In the event, there were “thousands and thousands” in Market Square.  One of the two said simply: “There’s more good than bad out there.” Life goes on. Again, not in the sense of pulling your boots up and making the best of it, but in the sense of acknowledging that this is not all there is, that we’re working towards something infinitely better. 

I think that’s what fulfilling the law might mean. Not solely changes to human systems, but changes in humanity. And perhaps that makes some sense of the gospel line: “I’m come not to destroy the law, but to fulfil it.” Not just to fulfil prophecy; not just to improve legal processes, but to fulfil the immutable laws of humanity for which these two mothers – and so many others around them – work so tirelessly.  

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