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
Community
Politics
6 min read

Camden: what’s up in Keir’s backyard?

The new Prime Minister’s constituency has valuable lessons for the country.

Simon Walsh is a communications consultant, journalist and non-stipendiary priest in the Diocese of London.

Kier Starmer walks along a residential development's path with two other people.
Starmer and local councillors in Camden.

‘What good ever came out of Nazareth?’ was asked of Jesus. The same might now be said of Camden, which lies at the heart of the Holborn & St Pancras constituency. A safe Labour seat since the 1980s, its present incumbent is Sir Keir Starmer who has been handed the keys to Downing Street in the General Election.

His wallet apparently has on it ‘Take me home to Kentish Town’. Two buses link Kentish Town, where he lives, with Whitehall – a route of about four miles. He will go into government with a very full in-tray, and many of them are issues he knows first-hand from his own constituency. I know them too, having lived there for 20 years.

Sometimes I cover services for a clergy colleague in the nearby parish of St Mary’s, Somers Town. The church is on Eversholt Street which runs along the eastern side of Euston station, incidentally the capital’s first mainline railway terminus. Last year, as I arrived for a mass one rainy Saturday morning, a random group of people sheltered in the doorway. They were, I discovered, addicts waiting for a drugs drop. Towards the end of mass, one of the group – a young woman – came into the back of church and found a pew in which to start preparing her fix. Once I had disrobed, I asked if she wouldn’t mind doing it somewhere else.

Another time, in the same church, a young woman from Spain was asking for money. She had answered a job advert on social media to come and work on a chicken farm. Having arrived and paid her accommodation for a week, she found there was no chicken farm, and trying to find other work was almost impossible because of paperwork. What could we do to help? The church itself is in dire need of financial support too.

St Mary’s Flats... were among the first examples of public housing in the country to have electricity and Jellicoe became something of a social housing celebrity.

Somers Town was transformed 100 years ago when its energetic parish priest, Fr Basil Jellicoe, created the first housing association. Dismayed by the squalor of Victorian tenements, he set about raising funds for The St Pancras House Improvement Society. Jellicoe was only in his mid-20s but had a solid Anglo-Catholic background founded on mission and a heart for the poor. The cramped and filthy conditions with extreme poverty were ‘an outward and visible sign of an inward and spiritual disgrace’ – for him, the opposite to the sacraments.

By the time Jellicoe moved from the parish in 1934, the slums had been cleared and a number of the new blocks built, the first being St Mary’s Flats, with others given saints’ names. They were among the first examples of public housing in the country to have electricity and Jellicoe became something of a social housing celebrity. Tragically, having worn himself out he died at the age of 36. His legacy is one of praxis – active Christianity meeting social problems where they are – and his model became the blueprint for many other housing associations since.

No surprise, therefore, that families struggle to afford to live in the area and migrate further out. As a result, schools have started to close. 

The area remains a swirl of social problems in addition to the drugs. Mental health issues are rife. There are plans to redevelop St Pancras Hospital which houses mental health services. The area suffers from traffic and noise pollution, and lacks communal spaces. Camden Council recently saw fit take one corner of a public green in Somers Town on which to build a tower block of multi-million pound flats, handy for nearby St Pancras Station. Crime rates are high with muggings and mobile phone thefts a daily reality. Last year, as mourners left a funeral one Saturday afternoon at St Aloysius Church just a few streets down from St Mary’s, a drive-by-shooting injured six people. Starmer called the incident ‘appalling’ and spoke of ‘extra patrols and community support’ after a conversation with police.

The area has become highly expensive. Local businesses are being priced out by increased rents. Very little social housing has been built this century. The average house price in NW1, which encompasses the Nash terraces of Regents Park, the council blocks and social housing of Somers Town, is £1.3 million. A two-bed flat is in excess of half a million quid. No surprise, therefore, that families struggle to afford to live in the area and migrate further out. As a result, schools have started to close – four in as many years recently. In his acceptance speech in Camden Council’s offices near St Pancras station, close to the world-renowned Crick Institute and Facebook’s UK headquarters, Starmer namechecked the mythical ‘girl from Somers Town’ and his hope for her future.

Charles Dickens went to school around here and knew these streets well. His 1848 novel Dombey & Son detailed the destruction and chaos caused in the area by the building of the railway line through it. 175 years later, it has been HS2, the great White Elephant which has dug up streets, seen whole blocks of accommodation and hotels demolished, diverted roads, and axed much-loved institutions like the Bree Louise pub. There has been no benefit to locals so far (quite the opposite, in fact) and it is a stain on both Labour and Conservative administrations. Sir Keir says he is furious at the ‘big hole’ left by the down-tools project. There is fear now that the redundant land will be subject to a ‘gold rush’ as developers circle to pick up some prime real estate.

Interviewed in June by the Camden New Journal, Starmer said: ‘The government has earmarked money for Euston. I want to see that money and obviously, if we come into power, we’ll see through all this money – and not stripped away from other projects which is the usual trick.’ He also said: ‘The other thing is we need housing. Camden desperately needs housing as many places do. So we will use it – if we are privileged to come into power – as part of our plan for 1.5 million homes.’

His manifesto has five pledges: 

  • Kickstart economic growth 

The cost-of-living crisis is biting hard here and the inequalities are stark. People need real money.

  • Make Britain a clean energy superpower 

It’s going to need more than a few on-street charging points for electric vehicles. And the carbon footprint of that HS2 project? 

  • Take back our streets 

He wants to halve crime rates but London has around 106 crimes per 1,000 people and his own constituency feels less safe than it used to. 

  • Break down barriers to opportunity 

Camden already ranks highly in the deprivation index where barriers are concerned: schools, homes, jobs… 

  •  Build an NHS fit for the future 

Again, the hospitals and GP services are cracking – high demand combined with under-investment is deadly. 

A prophet is not welcome in his own country, it was said. Although the new Prime Minister was elected with a majority in his home seat, it was down to 18,884 votes from the 2019 endorsement of 36,641 votes – a drop of almost 50%. In this election, an Independent candidate called Andrew Feinstein polled 7,312 votes with his pledge to improve life for local residents. Starmer’s constituents will be counting on him to fix the nation along with the problems on their own streets. Otherwise, safe seat or not, he may no longer be welcome in Camden either.