Article
Assisted dying
Comment
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. 

Article
Comment
Justice
Life & Death
Politics
7 min read

Grenfell: a tale of two towers

The Inquiry offers an opportunity to change the way we treat each other

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

A wrapping around the Grenfell Tower bears a giant green heart.
The Blowup on Unsplash.

Graham Tomlin was Bishop of Kensington at the time of the Grenfell Tower fire. This is the first of a short series of articles reflecting on this milestone in our national life. 

The Grenfell Inquiry report is brutal. None of the companies involved in the renovation of Grenfell Tower escape. Arconic, Kingspan, Rydon, Celotex, Exova and many others – all have a lot to answer for.  Listening to the statement by Sir Martin Moore-Bick and reading the report, words such as ‘failure’, ‘dishonesty’, ‘misleading’, and ‘defective’ sounded like a tolling bell throughout his account.   

This was a tragedy that was decades in the making. Reports came out, warnings were issued and routinely ignored. A government which led a campaign of de-regulation without looking at the consequences for safety, a local council that failed to plan ahead for such an event, a tenant management organisation that treated the tenants they were supposed to serve with disdain, all played their part. The construction industry fared even worse. A culture of unholy competition, ‘value engineering’ (another term for deception), cost-cutting, a scramble for market share all took precedence over the safety of the people who were going to live in the newly clad flats of Grenfell Tower.  

In the past, initial reports such as those on Bloody Sunday in Northern Ireland and on the Hillsborough disaster, were weak affairs, failing to listen to the voices of victims, too careful to preserve the status quo, only leading to further anger, and further reports which finally began to address the key issues. This report has not pulled its punches – perhaps because they kept the human side of the tragedy in mind throughout. 

In the early stages, in an inspired move, the Inquiry decided to offer an opportunity for bereaved family members to simply describe the people who died in the fire. It was intensely moving as the richness and colour of each person was described, celebrated and mourned. As a result, this Inquiry has never quite lost the human nature of this tragedy and I suspect that is why its results have been so hard-hitting. 

No blame for the victims - instead he demands a radical national repentance, a re-examination of deeper social and spiritual trends, and for a radical turnaround of attitude. 

Jesus and another tower 

Remembering the human scale of the disaster is vital, yet in itself, it does not lead to change. At one point in his public teaching, Jesus was asked about another disaster involving a tower which led to the tragic death of a large number of people. At some point during Jesus’ time in Jerusalem, it seems a tower collapsed in a part of the city called Siloam, killing 18 people. This tragedy clearly had a significant impact across the nation, and people started asking what it meant, and what it said about the society in which they lived.  

Jesus' words were harsh:

“Those who died when the tower in Siloam fell – do you think they were more guilty than all the others living in Jerusalem? I tell you, no! But unless you repent, you too will all perish.’”

No blame for the victims - instead he demands a radical national repentance, a re-examination of deeper social and spiritual trends, and a profound change of mindset. If they don’t, such disasters will continue to happen. When disaster strikes, it doesn’t say anything much about those caught up in it, but it does give us an opportunity to take a good look at ourselves.  

Jesus said that the two most basic commandments, the things we should set out to do every day of our lives, were to love God and to love our neighbour - who is deserving of love because they are first made and loved by God. The Grenfell story is an object lesson in what happens when those commandments get ignored. This is what happens when these commandments are superseded by other imperatives, such as to increase market share, to beat the competition or to safeguard the reputation of our own organisation.  

Grenfell was the result of a culture that has become so individualistic that we have lost sight of the fact that we are our brothers’ (and sisters’) keepers, that we have a responsibility for each other, and that we find purpose and meaning in loving our neighbours as we love ourselves, whoever they happen to be. I am sure that the employees of Arconic, Rydon, Kingspan and the Tenant Management Organisation of RBKC, would have done anything they could to ensure that they and their families enjoyed a safe and secure home. They simply failed to do that for those they were meant to serve through their work. They took care of themselves and their own. They lost sight of the people their work affected. They did not take care of their neighbour.

It is the individuals and institutions that have the resilience and flexibility to face up to failure, learn the lessons and to be open to change which ultimately excel. 

What happens now?  

Matthew Syed’s 2015 book Black Box Thinking looked at responses to catastrophic failure. He contrasted the approach of the medical profession with the aviation industry. Too often, he argued, when an error is made in the world of healthcare, the instinct is to cover up failure for fear of litigation or in order to protect reputations. As a result, he suggested, the same mistakes are often repeated, which means that thousands of people continue to die in hospitals every year due to preventable error. When a plane crashes, however, the ‘black box’ is recovered, data painstakingly analysed, and no stone is left unturned in order to determine the exact causes of the disaster to make sure that it never happens again. As a result, plane travel has become one of the safest means of transport we have.  

The companies and organisations that were meant to protect the residents of Grenfell failed in that duty. Yet the moral of Syed’s story is that failure is not something to be feared — but an opportunity to change. It is the individuals and institutions that have the resilience and flexibility to face up to failure, learn the lessons and to be open to change which ultimately excel. It is what the Christian church calls confession and repentance – the willingness to admit when we have got something wrong, bear the consequences, ask for forgiveness, resolve to learn from the error of our ways and to become a better person through it. Repentance is not wallowing in self-pity or hiding in a corner from the wagging finger of guilt; it is an invitation to honesty, to growth and to transformation.  

Those responsible will need to face justice. Yet if we allocate blame, punish the guilty, and then carry on as before, then there is no guarantee that something like this will not happen again. We might issue new types of building regulations, or safety measures in construction, but even that would not be enough. The kind of repentance that Jesus, and indeed the Grenfell Tower fire calls for is deeper - a radical look at the way we live together in our society.  

This involves all of us. As Andrew O’Hagan put it in a long article soon after the fire in the London Review of Books:

“In all the loosening of cares and controls and emergency services, it’s not just the current government but a succession of them that lie behind those deaths, and who, if not all of us, voted such vulnerability into existence? No one did well. If civic life is dead, with a 24-storey tombstone beside the Westway, it died in the times in which we too lived, and by the values we lived by. The point of a society, if we have one, is that when bad things happen, it’s everybody’s concern.” 

Grenfell is such an opportunity that we dare not let pass. If we carry on as normal, with our atomised individualism, our addiction to comfort, our spiritual poverty, our disregard for our neighbours, we would miss a huge opportunity to address some of the deeper issues in our life together, not to speak of refusing to heed the call of Jesus for true repentance.

In his statement in the House of Commons, Keir Starmer pledged a “profound shift in culture and behaviour.” I hope - and pray - this is what happens. Yet it will take more than changes to building regulation and for safety. It needs spiritual and not just political change, as I’ve argued here before. It would mean each of us looking at ourselves, and the cultures of the organisations of which we are a part (yes - including the church), and responding to the call to love God – to re-orient our lives around something, someone bigger and better than us – and to love our neighbours as much as we love ourselves. What if Grenfell sparked a fundamental change back to that more connected vision of who we are and what we are here for? Grenfell - and this report - is a shock to our system. Let us not waste it. 

 

Listen to Graham discuss Grenfell on BBC Radio 4's PM programme.