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
Change
Politics
7 min read

Hope is a choice, insist on it

Amid loveless politics, remember hope cannot exist in isolation.

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

A crowd of people stand in the side steps of the Lincoln Memorial
Easter services, Lincoln Memorial.
George Pflueger, via Unspash.

The other day – a cold grey day, the kind of day that makes summer seem as distant as a star – I encountered a woman who stood out. She was cheerful despite everyone else’s winter gloom, and she was wearing a home-made tabard. The tabard was covered in a layer that seemed to be made of tape and clingfilm, and underneath it were little Ukrainian flags, images, facts, and small everyday items like soap. I have seen her before dressed the same way. She stood out, I think, because of her attire but also because of the defiance she radiated – a defiant joy, but also belief that it is worth hoping and acting in the ways we can, even when all the evidence seems to tell us those actions make no difference. The news of Russian’s invasion on Ukraine in 2022 has lost its initial shock power. We are creatures who like stories, and so we like news that has a clear beginning or end. The messy middle can be hard to stick with, precisely because we do not know what comes next or how long it lasts. And so our attention moves on. This, coupled with our felt powerlessness in something so big and distant, can mean it is easy to lose hope, to stop taking action.  

But the woman who raises awareness most days in this creative way, with suggestions for what items to donate or how to send funds or how to host refugees, has been making me re-look at hope. Her posture – her insistence on hope as choice – feels life-affirming and countercultural. For a moment, she snaps me out of despair for the world. She faces looks of bemusement and seems to say, if not this, then what?  

What keeps us moving forward when the world seems heavy? Where does hope spring from, even in the face of overwhelming odds? Hope, I have learned, has been tangled with humans for as long as we’ve walked the earth. It ensured the survival of our ancestors because it drew them towards a future that might be better than today. It kept them going.  

In Greek mythology, Pandora opened a box out of curiosity despite being told not to. All kind of curses contained in the box spilled out into the earth. She wrestled the lid back on but not until it was almost too late. Almost, but not entirely. One thing remained in the box: hope. This myth always brings to my mind memories of visiting a slave fort that still stands on the coast in Ghana. The walls were oppressive, the words above the gate that led to the slave ships were haunting: ‘door of no return’. And yet I learned that there were songs. Spirituals and other songs that passed the time, helped members of different tribes feel connected when they were all shoved together, and conjured hope despite all the evidence to the contrary.  

Optimism asks us to sit back and hope for the best; hope knows that we have work to do to bring forth a better future. 

Ideas of hope have been with us always. And yet I find that hope can feel hard to conjure now, staring into the face of an increasingly unknowable and uncertain future:  authoritarian leadership that seems to be on the ascendancy, impacts of the climate crisis that are coming into startling clarity, and loneliness that has been declared a global health concern by the World Health Organisation. It is easy to feel that things are falling apart. Faced with these things and more, hope can seem naive, wishful, hard to get hold of.   

Perhaps one reason for this is that hope, in the age of the individual, is harder to come by because hope is relational, it cannot exist in isolation. It is transmitted through community, story, and care for others. Those old slave songs sang of hope because, I imagine, people had the reality or memory of each other. Hope said: people have been good, and they will be good again. Hope is insistently communal. It asks us not to bear the weight of the world on our own, but to face each other and distribute that weight via a web of relationship. Perhaps now, accessing a hope that can carry our burdens and our fears means first re-finding each other.   

Hope and blind optimism are, of course, different things. Rabbi Jonathan Sacks said that “Optimism is the belief that the world is changing for the better; hope is the belief that, together, we can make the world better.” Optimism asks us to sit back and hope for the best; hope knows that we have work to do to bring forth a better future. And so perhaps that’s why lately, hope has felt exhausting. I’ve worked with communities internationally and locally for two decades on all kinds of projects, always asking, is this how things have to be? How might we imagine and build better? And yet still the climate worsens, inequality persists, bad leaders get into positions of terrifying power. It is easy to stand back and despair, to question, to wonder if all the hard work has been in vain.  

Jesus knew this exhaustion. He knew what it was to work, encourage, and love hard, often to face rejection, mockery, and ultimately death. But still Jesus chose to enter into the persistent mess of the world. He chose the day in, day out work of becoming flesh. He affirmed the dignity of the marginalised, calling them into action, knowing that action would keep that dignity alive. He knew that new life would come through suffering, not by denying it.  

 

Strongman authoritarian leaders aren’t the problem, they are a symptom of a society who are divided and not encountering each other well 

Perhaps hope is hard too because though it is a posture which faces the future, it also asks that we live with integrity, love, and care right now, in this fractured world. Hope is not writing off the present in favour of some distant time or place. It is not wishing this world away so that we hasten to another one. It says, we can work for a better future, but we should not put off good work until then. That better future will only come if we invite it into our present, whatever the outcome might be. Hope is in living deep and timeless and world building values, even if there are no obvious or immediate results. Czech playwright and former dissident Vaclav Havel who led his nation after the collapse of communism said that

“Hope is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out.”

If a principle is right for the future, it is right for now, even if that requires work. If I espouse values of kindness, love, community, and imagine a future where these things rule, and yet ignore the marginalised, or distrust people not like me, or cut off people I don’t agree with, then my hope for the future is no more than optimism, because I am not willing to do the difficult work of living as if that future were here now.   

Hope is turning outwards and living these values with others, even when honestly sometimes it seems easier and more appealing to turn inwards and single-handedly try and fix things — a myth that has grown in our age of individualism, celebrity, and our self-referential rhythms of life.   

Hope has lately been asking me to take a Beatitudes perspective on things. In his Beatitudes, Jesus flipped the logic of the world on its head. The last will be first, the poor will inherit the kingdom, the weeping will find joy. Like the Beatitudes, hope asks me to take a different approach. When I look at the world through this lens I find new ways to think. Perhaps, for example, things aren’t getting worse but instead are becoming clear, truths are being unveiled – and so climate change is not the problem, rather, it is a symptom of a greedy economic system in which we are all complicit; Strongman authoritarian leaders aren’t the problem, they are a symptom of a society who are divided and not encountering each other well, and of money and distrust having too big a say in how we govern ourselves. This doesn’t mean we should stop addressing the symptoms, but that we have new possibilities in our scope for action.  

Now, as we enter another cycle of — at best — strange politics that is steeped in lovelessness and will have unknowable outcomes near and far, the thing I search for alongside wise voices is hope. And searching for hope means living a good future now, and finding others who can carry both despair and beauty with me. Novelist and critic John Berger said that

“Hope is not a form of guarantee; it’s a form of energy, and very frequently that energy is strongest in circumstances that are very dark.”  

So let us call on that energy, that light in the dark today. It is how we build the future.  

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