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
Church and state
Comment
Community
Trauma
5 min read

After Southport: how to communicate amid tragedy, rumour, and riot

Handling the media in the aftermath brings dread, discretion and dignity

Stuart is communications director for the Diocese of Liverpool.

A media pack await a press conference in a street.
Media covering the Southport attacks.
The Emperor of Byzantium, CC BY-SA 4.0, via Wikimedia Commons.

Working from home in the quiet town of Ormskirk, about four miles from Southport, the first I noticed was a cacophony of sirens accompanied by our local Facebook groups buzzing with speculation over what it was this time. The news started breaking. An incident in Southport, vague details at first but enough to start that feeling of unease.  

Then the phone call and email. The local vicar and one of our Archdeacons seeking advice as inevitably the media would be looking for comment. I’ve taken a similar call many times over the 20 years I have worked with the church. It sets a mix of contradictory emotions. Selfishly you can’t help thinking there goes my plans for the day before you are sharply brought up to the knowledge that the reason for this is a tragedy for others.  

Southport brought out a further emotion. When I was a student, I lived for a year close to the location of the stabbings. 30 years on and the suburban area I knew was seemingly unchanged. Yet everything was different. 

The role of the press officer at this point involves navigating a tricky balance. You have a job to do, the journalists you deal with have a job to do. You are constantly fielding phone calls, jotting messages juggling time slots. You have a relentless barrage of people putting interview requests in and you want to ensure the right voices are heard and that those who represent aren’t worn out by interview upon interview. 

Then you remember what caused the story in the first place. You think of the emergency services working hard to support those in need. Above all you think of the victims and the families – at that time not knowing how many or how serious. And the sense of gloom deepens as the rumours of how serious the situation spreads before you get word of a police conference fearing the worst before the worst gets confirmed. 

At these times the mood amongst the media teams always feels strange. Acutely aware of the pain of the situation and sympathetic to what’s happened they can’t escape the job they have to do. I have seen this over many years mainly through the management of the press pens outside funerals at Liverpool Cathedral and churches across the region. You get to know some of the pack well, mainly and somewhat grimly reuniting at the next tragedy. They are massively co-operative with a strong sense of camaraderie, yet you can feel the pressure coming down to them from their news and picture desks. So, a sharing of resources and support occurs underpinned by a hint of journalistic competition.  

The press officer’s role here is to feed the machine. It’s hungry. They have time to fill and very often, particularly so close to when the event happened, everyone is more speculative than informed. The machine needs feeding whatever and the church voice can be a calm voice of authority speaking the anxieties and wishes of the local community. However, we don’t want to be rent-a-voice, we are not helpful if we seem to be trying to grandstand over someone else’s grief. We need to show the compassion and love that our faith and Christian values teach us. 

That became critically important on the second night when things turned ugly and the story was hijacked by rioting right wing mobs. Having been to the peaceful and respectful vigil on the afternoon I drove back past the scene of the stabbings on my way home. You could smell the tension in the air as people were converging on the streets exuding a purpose that did not seem like the sorrow from earlier that day. 

The media aftermath for the church was then to support the efforts showing the community rebuilding whilst also calling for harmony, standing shoulder to shoulder with representatives from all faiths. 

And on to the funerals. 

There are many patterns to organising press coverage at a funeral. Usually, we need a pen to marshal the cameras in a way that enables them to get the pictures they need whilst maintaining a respectful, sympathetic distance. It feels there is a nigh on obligatory picture of the service order, my hand featuring in many of these shots. There is a lot of standing and waiting, clarifying the minutia of the service so the reporters can tell the story and capture the atmosphere.  

Yet for me each funeral is different as I try to ensure the family’s wishes predominate. Southport was a case in point. Of the two funerals in Anglican churches (one victim was from a Roman Catholic family) one family wanted no coverage and my role was simply to make sure that wish was honoured. The other saw cameras in and around church and a full suite of reporters so we work hard with them to ensure respect. Mostly that involves a combination of setting consistent fair rules and supplying enough for them to tell the story. Journalists can cope with told they can’t do something provided their rivals are getting the same message. Lose the consistency you lose the pack as I experience outside Ken Dodd’s funeral when I had to scream at the press pack to get back in their pen before the cortege arrived.  
I see this as a ministry. I have learnt techniques over the years, witnessed fights in graveyards, stood soaking waiting for the funeral to end and the coffin to leave so I can relax. Doing this is a privilege which spills over into the funerals I conduct as a priest. As do the learnings from those funerals that, in turn, inform my ministry. Get it right it becomes a fitting, respectful and dignified way for the wider community to say goodbye to a victim. 

Then when it’s done we move on. The press pack to the next day’s story myself to the tasks from the routine job that I had to ditch. That’s easier for us. But the families and loved ones can’t easily move on from their pain and grief. 

Support Seen & Unseen

Since Spring 2023, our readers have enjoyed over 1,500 articles. All for free. 
This is made possible through the generosity of our amazing community of supporters.

If you enjoy Seen & Unseen, would you consider making a gift towards our work?
 
Do so by joining Behind The Seen. Alongside other benefits, you’ll receive an extra fortnightly email from me sharing my reading and reflections on the ideas that are shaping our times.

Graham Tomlin
Editor-in-Chief