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
Leading
Politics
7 min read

Leaders wanted for these testing times

We need leadership that is famous for fifteen miles not fifteen minutes.

Elizabeth Wainwright is a writer, coach and walking guide. She's a former district councillor and has a background in international development.

A deflated looking woman stands aside from a protest rally, holding a small doll of herself that reads Recall Knope'.
Local leadership: Leslie Knope serving Pawnee, Indiana.

We are in a year of elections – locally, nationally, and in the US, and I have been wondering whether it’s true that we get the leaders we deserve, whether political leadership has always felt this way – this detached, divisive, even dangerous? More about ambition than integrity, about individuals more than our common life? Where might we find leaders that can take us into an increasingly hard to navigate, uncertain world?  

I find myself thinking back to local leadership and difficult conversations I was involved in as a district councillor. These were often conversations about priorities, and money – mainly, the fact that there wasn’t enough of it, and what there was continued to be pared back and back until only the absolute essentials were covered. Many council tax bills have recently gone up, usually with an explanation of the reason for the rise. Local authorities in Scotland recently voted for a council tax freeze but only after the promise of funding from the Scottish government to make up the shortfall. During my time on the council, we would write letter after letter to government ministers seeking clarity about grants or cuts. When extra funding was announced we were pitted against other councils to bid for meagre pots of money, taking time away from officers who were already stretched too thin. Each councillor, each officer, each member of the community we served had their own idea about how to approach budgeting and spending. Sometimes those ideas aligned, but often they did not. Councils are in an impossible situation.  

And yet decisions made at this level impact us all. National leaders might set the direction, but local leaders steward and implement and envision and listen – they are close to the people they serve, their decisions impact us all day-to-day: councils are responsible for things like children’s services, highways, housing people, parks and pools, and lots more

The people who have played the biggest role in my life have been the people that made me feel valued, seen, heard, capable. 

Conversations about how to fund local authorities are difficult at any time, but especially so now, with crises coming from every angle – cost of living, climate change, ongoing post-covid recovery, austerity, and so on. To be a leader now – nationally yes, but especially locally, means making sure that essential services keep functioning despite lack of funding or clarity from government, and whilst also tackling climate change and all the other pieces of our fragmenting world. To be a leader now who shows vision and humanity and care despite the seemingly cynical and hurting spirit of the age – is, I think, a test of the meaning of leadership. This test of leadership doesn’t just face local and national government though. It faces all of us right now as we contemplate an unknowable future.  

Essayist Ralph Waldo Emerson believed that “our chief want is someone who will inspire us to be what we know we could be”, and we are all capable of helping others be what they can be – whether a neighbour, a colleague, a community, a team, an organisation, others we come into contact with; we can all lead. Author, poet, and civil rights activist Maya Angelou said that “people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” The people who have played the biggest role in my life have been the people that made me feel valued, seen, heard, capable. They have seen who I am, and who I could be, and they walk with me as I move in that direction. I think the best leaders do this too.  

It is not glamourous, but, like a lighthouse that shines by just staying where it is, it calls people, lights the way, watches, serves, guides. 

In contrast, the worst leaders seem to cling to traditional ideas of power, to control more than setting people free, to achieving their goals through any means necessary. I think of authoritarian regimes that rig elections and limit freedoms, and corporations that pursue profit at the expense of employees and the environment, and political campaigns that prioritise controlling the narrative over informing people. These embody warped leadership traits. And these warped ideas of leadership are given airtime, they fuel our news and our social media feeds and our anxiety. They make us angry, but they can also disempower us and close off the possibility that there is another kind of leadership, one more aligned with the Old English root of the word ‘leader’, meaning ‘one who guides and brings forth’. There are, though, places we can look that point to that other kind of leadership – to something more beautiful.  

One place is my own doorstep. Here, there are people that see a need and organise people to fill it – whether hunger, loneliness, lovelessness, this is a kind of roll-up-your-sleeves leadership, the kind that is famous for fifteen miles not fifteen minutes. It is not glamourous, but, like a lighthouse that shines by just staying where it is, it calls people, lights the way, watches, serves, guides. 

I try to hold on to the fact that we do not need to wait for national elections to call forth the kind of leaders we want. 

Another place is the gospel, where again and again Jesus turned traditional ideas of leadership upside down. He taught that it must serve, not be served; that it can be great through humility not self-importance. He criticised religious leaders for seeking prestige and personal gain. And Jesus did not just teach this stuff, he lived it – he washed the feet of his disciples, he empowered them rather than wielded authority over them. He lived as a shepherd that leads and tends his flock with his love. He laid down his life for his friends, for all of us. And this I think is where leadership starts to look a lot like love. Jesus showed how true leadership that transforms individuals and communities, that heals division and brings people together, is led and motivated by love, not power. He taught that leadership without love is hollow and even harmful. He showed that leadership, and the love that fuels it, guides and inspires and cares for people. We need these kinds of leaders now more than ever. My own experience tells me that hard conversations become easier to navigate when care, humility, and listening are present.  

In the UK, many of us are trying to get the measure of Rishi Sunak and Kier Starmer. An Ipsos poll in February explored how the public view these and other political leaders – a significant number were unclear about what they both stood for, but Starmer was ahead of Sunak in various leadership traits including experience, capability, strength. I want to know what other traits we’re seeking and demanding of our leaders nationally, locally and in ourselves. On the council I served on, I saw elected councillors asleep in meetings, ill-prepared, voted in because people did not think their vote or questions or care made a difference. On some level at least we do get the leaders we deserve – those we are prepared to be curious about, and call out, or encourage, or demand more of; more than just the ability to stay awake during meetings, more than just capability and strength, but also aliveness, care, compassion, humility, love.  

We need to demand more of our national leaders, especially now. But I try to hold on to the fact that we do not need to wait for national elections to call forth the kind of leaders we want. We can call them forth in ourselves, in each other, in our communities – these are the leaders that impact us closely, every day. I think of some of the best leaders I have known: theirs was a leadership of passion more than position, invested in people more than prestige, offering both humility and vision – a combination that feels hard to find in our current political landscape. They call to mind what writer and aviator Antoine de Saint-Exupéry said, that: “if you want to build a ship, don’t drum up the men to gather wood, divide the work, and give orders. Instead, teach them to yearn for the vast and endless sea.” Good leaders will help us see and navigate this endless ocean, these present storms – cost of living, conflict, division, ecological and economic unravelling. They remind us, like the gospel does, that the ship is a means to an end – one of new horizons, of togetherness, of love for this beautiful wide world.