Article
Assisted dying
Comment
Death & life
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
Loneliness
Mental Health
5 min read

What Bobby Brazier, Jo Marsh and Eleanor Rigby have in common

A public health campaign asks influencers if they are lonely.
a young man looks pensive as he answers a questuon while sitting in a fancy room.
Bobby Brazier at 10 Downing Street.
NHS.

‘Loneliness. It’s a part of life. Let’s talk about it’  

That’s the new slogan offered by the NHS in partnership with the Department for Culture, Media and Sport. As part of their campaign, they recently invited young influencers and TV personalities to Downing Street to do just that – to talk about loneliness.  

With those aged between 16 and 29 now twice as likely to report feeling lonely as those over 70, these celebrities were tasked with answering a few of the questions most asked by people within that age group. Their questions went along these heart-wrenching lines:  

Why am I so lonely?  

Is it normal to feel lonely?  

Will I always be this lonely?  

And while their answers to such questions were a little ‘meh’ (whose wouldn’t be? They were given seven seconds to answer some of humanity’s deepest questions), it doesn’t much matter, their answers weren’t really the point. Rather, viewers were presented with a handful of popular, successful, lovable (looking at you, Bobby Brazier) and happy looking people doing something notoriously difficult: admitting loneliness.  

And I think that may be the point.  

I am of the firm opinion that admitting to feeling lonely is one of the hardest things a person could do. I have certainly never had the bravery to do it.  

I remember watching Greta Gerwig’s 2019 adaptation of the beloved 1868 novel, Little Women, for the first time; I was always going to love it, I had decided as much before even stepping foot in the cinema. But there was one scene that felt as if it literally took my breath away. I was left winded in row C.  

It is toward the end of the film, and Jo Marsh, the feisty, strong and independent protagonist, is giving a feminist monologue  for the ages (albeit to her mum) as she stands in the attic of her childhood home. Jo speaks of women’s minds and souls, their ambitions and talents, she explains how sick she is of being underestimated, getting more impassioned with every word. That is, until she tearily ends her speech by declaring – ‘…but I’m so lonely.’ 

This isn’t in the book.  

This final line was written by Greta Gerwig specifically for this adaptation. And the only person who seemed to be more taken aback by Jo’s words than me (an owner of more editions of the novel than is cool to admit), was Jo herself, who instinctively clasped her hand to her mouth as if she couldn’t believe that she’d just said such words aloud.  

As far as filmmaking goes, it was genius. As far as human nature is concerned, it was, well, true. 

Not only do we find loneliness acutely painful, but we also tend to find it near impossible to admit to, so much so, the government currently feels the need to step in. Why is that, I wonder? Why does ‘lonely’ seem to be the hardest word? 

Those who admit to their own loneliness are wading into profoundly vulnerable waters. 

Part of it is certainly because there is a social stigma attached to feeling lonely. Ironic, isn’t it? How loneliness has social connotations. Nobody wants to be Eleanor Rigby, nor Father McKenzie, nor any of ‘the lonely people’ that Paul McCartney so pities, for that matter. It’s one of the only Beatles songs you wouldn’t want to have been written about you. Loneliness feels like a failure somehow, and so we struggle to admit it, even to ourselves. A failure because, we’re supposed to be self-sufficient, independent, free-thinking, emotionally-sturdy individuals (which is the operative word, of course). That’s what individualism has taught us, isn’t it? And so, how do we reconcile that with the piercing pain of isolation? How do we admit that there’s a deep crack within us that can’t be papered over by success, or wealth, or another episode of our favourite podcast? How do we go about admitting such a lack? A lack, which despite individualism’s best efforts, has us naturally wondering why it’s there in the first place; are we unpopular? Unattractive? Unlikable? Or worst of all, unlovable?  

Those who admit to their own loneliness are wading into profoundly vulnerable waters. And most of us are utterly unwilling to follow them there, lest we be spotted by a budding Paul McCartney and our loneliness be immortalised.  

And then, of course, there’s the other side of the coin: what does our loneliness say about the people who we are in relationship with? Nobody wants to unleash the panic and guilt tucked away in that can of worms (which, I must note, is unnecessary panic and guilt - there could be any number of reasons you’re feeling lonely, despite your very rich relationships).  

And so, we just don’t say the word. And that’s what appears to be making the NHS and, rather randomly now that I think about it, the Department for Culture, Media and Sport so nervous.  

We need to admit when we’re lonely. We have to pull a Jo Marsh and say it out loud. We must give language to the lack that we feel.  

To be known and loved is my deepest and truest need.

One of the things that I find myself most consistently thankful for when it comes to my Christian faith (you know, apart from the most obvious aspects…) is that it gives me such language. At the risk of sounding annoyingly self-centred, it dignifies the feelings that I find hard to even acknowledge. It offers explanation, and therefore, a comfort that I could never find anywhere else; a comfort rooted in truth.  

It may sound nuts, but I have come to understand the reality of loneliness, not through influencers on a sofa in Downing Street (although that’s great), and not even through Jo Marsh’s monologue (which is even greater), but through an ancient Hebrew poem. This poem tells me that to be alone is ‘not good’.  

Not good. Not right. Not as it should be.  

That’s God’s point of view at least – that to be alone, properly, completely and permanently alone, goes against the very fabric of the world. It is at odds with human flourishing. I’ve come to deeply value how concrete that is. I’ve also learnt to relax into the knowledge that not only is loneliness ‘normal’ (referring to one to the questions referenced at the beginning), it’s natural, in every possible sense of the word.  

To be known and loved is my deepest and truest need. I was designed for relationship, with God and with people. And therefore – with all the complex ways that life unfolds - to be lonely, is to be human.  

So, with all of this in mind, I’m tempted to end where we began, to come full circle and once again borrow the government’s words: 

‘Loneliness. It’s a part of life. Let’s talk about it.’