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
Comment
Mental Health
Politics
4 min read

Rachel Reeves’ tears: public life still mocks those who show anything but the positive

‘Mental health awareness’ is failing, our words are not matched by our actions

Rachael is an author and theology of mental health specialist. 

 

 

A woman sits and holds back a tear.
Rachel Reeves on the front bench.
Parliament TV.

It’s a bad day at work. Everyone is on high alert, and tempers are frayed. You have your own reasons for being extra ‘on edge’, but now isn’t the time to get into it because it’s the big weekly meeting and everyone is going to be there - worse still, the cameras are going to be there. Despite this, you take a deep breath and take your seat (which, although an honour, is regrettably in the front row).  

But as the fractious meeting begins, you feel the ache of impending tears at the back of your throat, and to your horror, your eyes fill. You do your best to wick them away, but you know they’ve been spotted when someone opposite announces how miserable you look. 

Many of us will have been in a similar, if probably less public, situation at some point in our careers when the emotions we stuff down in the name of professionalism spill out - but I doubt any of us will have done so in the House of Commons with cameras trained on every movement and a less than friendly crowd opposite.  

There have been countless articles already speculating about the reason for the tears of the Chancellor, Rachel Reeves, during Prime Minister’s Questions - but most seem devoid of sympathy or empathy, concerned only with the political implications, but not the person at the centre of this story.  

Our reaction to Rachel’s tears is an echo of the sentiment behind the Welfare Reform Bill, which seems to say that need is unacceptable and we should all be able to don that famously British ‘stiff upper lip’ and just get on with life.  

Regardless of what you think of the Welfare Reform Bill, the way it has been briefed and communicated has raised anxiety and fear amongst the disabled community (me included).  

The main message has been that too many people are receiving Personal Independence Payments (PIP) for mental illnesses such as anxiety and depression, with even the former Prime Minister Tony Blair telling people to ‘stop diagnosing themselves’ to combat out rising welfare bill - despite the fact that accessing PIP requires rigorous assessments and support from medical professionals. (It also has a 0.01% fraud rate and was designed to compensate people for the extra cost of being disabled which is estimated to be up to £1000 a month.) 

This tableau is emblematic of how ‘mental health awareness’ is failing in this country; our words are not matched by our actions. 

We know, 27 years after the first ‘Mental Health Awareness Week’, that mental health is important, that emotions are natural and valid - and yet we mock any leader who shows anything but positive emotions.  

We know that people suffer, are disabled by and killed by mental illnesses, and yet we seek to strip support from those who need it most, claiming that they are diagnosing themselves. 

We need a different approach, both to how we handle emotions in public life and the way we talk about those who need extra support due to their mental illnesses.  

Emotions aren’t bad - they help us connect, keep us away from danger and allow our bodies to release unbearable tension, as in the case of crying, whereby tears of pain are intricately designed to help us cope. The tears we shed when faced with chopping a pile of onions are chemically different to those that fall when we are grieving, angry or in pain. Tears of pain should inspire us to reach out to the one in pain with compassion not contempt.  

The way Jesus led 2,000 years ago shows us another way, both of leading and emoting.  

Jesus consistently welcomed those most in need; from healing the woman who had bled for twelve years, considered unclean and rejected by her community, to healing a paralysed man lowered through his roof by friends.  

And yet his ministry was not just one characterised by miracles and might, but demonstrated humility and humanity as he wept over the death of his friend Lazarus and allowed himself to be stripped of all strength as he hung on a cross made for criminals.  

The night before he died, he gathered his friends and through tears and blood-soaked sweat submitted to the Father in the most painful way, and I, like many others, draw comfort and strength from Jesus’ willingness to cry.  

As preacher Charles Haddon Spurgeon said, "A Jesus who never wept could never wipe away my tears."  

So perhaps rather than mock Rachel’s tears, they should cause us to rethink how we approach need and recognise none of us are immune.  

Perhaps, we may even join with Paul’s words in his letter to the Corinthians: “For when I am weak, then I am strong.” 

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