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
Development
Justice
Music
5 min read

Millions of people are still cold, hungry and naked – will you be there?

The call to justice that echoes from Trafalgar Square to primary schools

Pete Moorey is a campaigner for Christian Aid.

A school choir sings in an ornate abbey setting
Twyford School Choir sings in Westminster Abbey.
Dean & Chapter of Westminster.

I’m getting close to my 50th birthday, so I’m prone to nostalgia. My mind wanders back forty years to my primary school days in the early 1980s in a village in Sussex.  

Once or twice a week, we’d have school assembly. This included singing hymns. Not something that a shy seven-year-old would usually enjoy. But, in fact, we belted out a series of classics with gusto, accompanied by an almost proficient teacher on an almost tuned piano. 

To Be A Pilgrim with its lyrics about fighting giants. All Things Bright And Beautiful and those purple headed mountains. And then our favourite When I Needed A Neighbour with the opportunity to scream out the words “I was cold, I was NAKED!” at top volume, cheekily looking at your classmates as you asked, “Were you there?” 

The thing about those hymns was that the lyrics stuck. Not just now, decades on, but even back then. And so when a teacher in assembly started to talk to the school about the famine in Ethiopia or the hurricane in the Caribbean, you began to think “Is that my neighbour?”  And when your church encouraged you to deliver envelopes door to door to raise money for Christian Aid Week, you asked yourself “Was I there?” 

Of course that was the intention of those songs. The story of When I Needed A Neighbour is bound up with the history of social justice movements in the UK and in particular the organisation I work for, Christian Aid. 

Christian Aid was founded in 1945 by the British and Irish churches, who felt convicted to do something to tackle the refugee crisis and poverty sweeping across Europe following the Second World War. 

By the late 1950s, it was running Christian Aid Week - a big charity appeal to tackle global poverty long before Live Aid or Comic Relief. And as Christian Aid reached its twentieth anniversary in 1965, this annual fundraiser was a big deal. 

Such a big deal in fact, it decided to launch the fundraiser in Trafalgar Square by running a Beat & Folk Festival. You can find an old newsreel of the occasion on YouTube. Nelson’s Column is surrounded by thousands of young people listening to the Christian equivalent of Peter, Paul and Mary and getting fired up about global injustice. 

For the occasion, the then Christian Aid area secretary for London, Brian Frost, decided that a new song needed to be written. And so he approached the modern hymn writer of the moment, Sydney Carter. Two years early, Sydney had written his most famous hymn Lord of the Dance

Brian was of that era when Christians were at the heart of the anti-apartheid movement and committed to ecumenical action. And so combining this passion for social justice and the folk song mastery of Carter - When I Needed A Neighbour was born.  

As Christian Aid marks its 80th anniversary, we revisited this classic. When you watch the newsreel of an early performance in 1965, you quickly realise its folk credentials. It’s not just the fact that it’s being sung by marvellously hirsute men, it’s also there in the folk melody, guitar accompaniment and sung refrains.  

A year later Sydney Carter would record an EP that included Lord of the Dance which featured the folk royalty of Martin Carthy on guitar. For folk aficionados, you’ll know him as one of the English folk music greats - married to the incredible Norma Watterson and father to Eliza Carthy. For those less familiar with the genre, he was also an important inspiration for Paul Simon and Bob Dylan - yes, him off A Complete Unknown. 

There’s no evidence that Martin appeared on When I Needed A Neighbour but I think his involvement a year later confirms that the song sits firmly in the Sixties folk music boom. To young ears, it would have been hip. To older ears, perhaps scandalous.  

How do you reimagine such a classic as When I Needed a Neighbour, 60 years on from its birth - and now 80 years into Christian Aid’s history? Especially at a time when we witness our global neighbours in Gaza, Sudan, Ukraine, the DRC, and more wondering if - in the face of conflict and humanitarian disaster - anyone is there. 

We started with the lyrics. In 1965, Sydney Carter captured something of the simplicity of the issue at hand. People are cold, hungry and in need of shelter. And there’s something that each and every one of us can do, in our common humanity, no matter who we are, whatever our creed, ethnicity or background. 

Within a few years of the song being written however, Christian Aid had a lightbulb moment - it wasn’t enough for us to respond to emergencies around the world. Not enough also to work with communities on long term economic development. No, if are to live out God’s call to act justly and to love mercy, then we needed to be part of movements tackling the unjust structures and systems that result in poverty and inequality around the world. 

And so in returning to When I Needed A Neighbour and working with hymn writer Ally Barrett, we have now written new words that act as a call to each and every one of us to be a neighbour by speaking out for justice. This is something that Christian Aid has done throughout our history, calling for action to drop the debt in the 1990s or as one of the first development organisations campaigning for climate justice in the 2000s. 

This week we marked our 80th anniversary at Westminster Abbey by recommitting ourselves to God’s call for justice. And this included the Kingdom Choir (who famously sang at Harry and Megan’s wedding) and the Sacred Choir from Twyford Church of England school in London performing a gospel-tinged version of When I Needed A Neighbour

My hope is that, 60 years on, the song will still carry resonance. In an age when conflicts rage, the climate crisis runs riot and inequality is rife, isn’t it time to answer When I Needed A Neighbour’s call again? 

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