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
Grenfell disaster
Trauma
6 min read

Grenfell: how long should we remember?

There are good and bad ways of remembering.

Graham is the Director of the Centre for Cultural Witness and a former Bishop of Kensington.

A white building wrap around a tower is topped by a green heart and the slogan: Grenfell Always In Our Heaets.
Grenfell Tower, Summer 2024.
Rc1959, CC0, via Wikimedia Commons.

For nearly eight years now, Grenfell Tower has remained standing as a reminder of one of the most painful days in recent British history. The news that the government intends to dismantle the remains of the Tower has split local opinion. Some of the bereaved and survivors suggest that the government has scarcely consulted them. For many, the building is a tomb, still containing the memory, if not the actual remains of their loved ones whose bodies could not be recovered. They understandably fear them being forgotten when the building no longer stands as a reminder. Last year I sat in on a gathering where bereaved families and survivors of the fire told their stories in the hearing of representatives of the companies who were responsible for the cladding which caused the fire to spread. The memories and emotions are still raw and unhealed.  

On the other hand, many local residents would like it taken away, as its constant, looming presence is a painful reminder of that dark night. They also see the logic in bringing down a fatally damaged and increasingly dangerous structure that costs the taxpayer millions each year to keep from collapsing under its own weight.  

The key issue at the heart of this debate is how we remember - especially, how we remember pain. In the rhetoric around Grenfell, as with many other tragedies, we often hear calls to ‘always remember’ and that we must ‘never forget’ the wrongs done which caused the deaths of those 72 people. The Grenfell Memorial Commission, which was charged with thinking about what memorial should stand on the site of the building in future, claimed as its aim to “make sure the Grenfell tragedy can never be forgotten.” 

Such calls to ‘never forget’ are powerful. They seem a proper tribute to those who died, they ensure that those culpable are not let off too easily, and that justice is properly done. To blithely forget such horrendous evils seems an affront to justice, and a morally culpable act. 

Yet must we always remember the hurts and pains of the past? Can we imagine a future where such memories fade into the distance and no longer cast their painful shadow over our lives?  

Whether and when Grenfell Tower comes down, is yet to be determined. Yet only when we keep in mind the destination of the journey of healing can we make good decisions...

Theologian Miroslav Volf asks all these questions in his book The End of Memory. He describes good and bad ways of remembering. We can remember to cherish the dead, to learn lessons for the future, to ensure justice is done. Yet we can also remember to nurse grievances, to cling onto grudges, to imagine horrible pain inflicted on those who wronged us. Memories of wrongs done to us can imprison and define us purely as victims, never in control, always subject to the actions for others, with no agency of our own. 

Volf’s Christian faith tells him that the human race is beckoned towards a new world, in the full presence of God, of what he calls ‘final reconciliation’. It is a place where we will be captivated by a vision of the beauty and goodness of God, a vision that we only dimly glimpse in this world. He asks the question: in such a world, will we remember all the wrongs done to us? Can we imagine still clinging onto the memory of the sins and crimes that others inflicted on us? Even if that were in principle possible, would we remember all the harm done to us? And the harm we did to others? If not, which sins would we remember? Which ones would we forget? Would not such memories blight the joy that such a world would surely offer? 

Reflecting on his own youthful and painful memories of interrogation in communist Yugoslavia, and other tragedies such as the 9/11attacks, Volf imagines getting to the point where we don't forget the terrible things that others have done to us, but when we actively don't remember them. They still occupy a place in our minds but are instead relegated to a corner of our consciousness, under our control, no longer rearing their ugly and painful heads when triggered by other events. Such an ability not to remember, he suggests, is a good thing: 

 "Non-remembrance of wrongs suffered is the gift God will give to those who have been wronged."  

At the same time, Volf is careful not to imagine getting to this point too easily. Wrongdoers cannot for a moment insist that those they have wronged forget their misdeeds. Such non-remembrance can only happen when truth has been told, sins punished, and justice done. Yet when all that has taken place, that ‘final reconciliation’, Volf imagines, might even embrace the unimaginable - an ultimate reconciliation between the wronged and the wrongdoers.  

Is it possible to imagine children whose parents were killed because of the negligence and culpable cheating of contractors who knowingly put unsafe cladding on Grenfell Tower, ever being reconciled to and even embracing the perpetrators? Volf suggests we can, while recognising that this can only happen when the crime has been identified, fully recognised, repented of profoundly, forgiveness offered and accepted and the appropriate penalty paid.  

While such a process remains incomplete, the obligation to remember remains, and reconciliation cannot yet take place. But true healing from such hurts is not to be forever dominated by them, defined by them, or to live in constant enmity and resentment because of them. It is, instead, to gain the strength and ability not to remember them, not to be defined by them, and even - possibly, perhaps - to find reconciliation with their perpetrators. 

The Grenfell Public Inquiry that reported last year was an important step for the bereaved and survivors. It was not the end of the journey. Far from it. The process of enacting justice through prosecution of the guilty lies ahead. But as an exercise in truth-telling, in giving perpetrators the opportunity to own up and confess their guilt, in a truthful recognition of what went wrong, it was a vital step towards the possibility of reaching that stage when the memory of Grenfell no longer defines its victims. It opens up the possibility at some point in the future, where they might be in control of their memories rather than their memories controlling them. 

The Danish Christian philosopher Søren Kierkegaard once wrote that we humans need to learn both “the art of forgetting” and “the art of remembering”. To know when and how to do one and when to do the other is the gift of God and an art of true wisdom. 

Whether and when Grenfell Tower comes down, is yet to be determined. Yet only when we keep in mind the destination of the journey of healing can we make good decisions about such fraught and emotionally charged issues. The Tower cannot remain as it is - everyone acknowledges that . Yet it's hard for many to think about its disappearance without knowing what will replace it. Which is why plans to demolish the Tower must go hand in hand with the plans for the lasting Memorial that will stand on the site. Yet that can only happen if it serves the goal of being able truthfully to remember no longer the pain and injustice of the past.  

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