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. 

Interview
Assisted dying
Culture
Politics
S&U interviews
5 min read

Marsha de Cordova: the personal experiences driving her passionate politics

“What disabled people need is assistance to live, not to die.”

Robert is a journalist at the Financial Times.

 

A woman wearing a red jacket stands formally beside an office stair case.

When Marsha de Cordova talks about most issues relating to her work as the Member of Parliament for Battersea, in south London, she sticks to the standard position of her Labour party. Meeting at her constituency office by the busy Clapham Junction railway station, she dutifully defends her party’s government, elected last July. She points to ministers’ work to reform planning and improve renters’ rights as evidence they are making progress. 

But when conversation turns to the Assisted Dying Bill currently going through parliament, her tone becomes unmistakeably more urgent and her passion more obviously personal. 

The strong feelings mark de Cordova out as one of a group of Labour MPs who have been spurred by personal experience and, in many cases, religious conviction to oppose the Assisted Dying Bill introduced by a colleague, Spen Valley MP Kim Leadbeater. While the legislation is a private member’s bill without official government support, it has been widely seen as reflecting the views of Prime Minister Keir Starmer. 

De Cordova, who is Black, expresses similarly trenchant views about the government’s rhetoric on immigration. She is also a strong supporter of rapprochement with the European Union. 

However, her views on assisted dying – informed partly by being a committed Christian – are particularly forcefully expressed. She answers tersely, “No, I’m not”, when asked if she is happy about the political capital the new government has expended on the Assisted Dying Bill. She adds that she voted against it at second reading, the first parliamentary vote on a bill. She intends to oppose it again at third reading, before it passes to the House of Lords. 

“We didn’t need to expend so much capital on it,” de Cordova says. “The aim now has to be to ensure the bill doesn’t pass third reading.” 

Many of the Labour MPs who have opposed the legislation have cited religious objections. In the Cabinet, they include health secretary Wes Streeting and foreign secretary David Lammy, both Christians, and justice secretary Shabana Mahmood, a Muslim. 

De Cordova also links her opposition to her disability. De Cordova is registered blind because of nystagmus, in which the eyes repeatedly move involuntarily, disrupting vision. There have been fears assisted people could come under greater pressure than others to seek assisted death. 

“As a disabled woman, I’m incredibly concerned,” de Cordova says. “What disabled people need is assistance to live, not to die. That should be our government’s priority.” 

“My faith is an integral part of who I am. It really is part of my values, my beliefs, my politics.” 

The assisted dying fight has garnered unusual levels of publicity for the Battersea MP, who entered parliament seven years ago when barely expecting to do so. De Cordova, now 49, was serving as a Lambeth borough councillor when the 2017 snap general election was called and decided to seek the Labour nomination for Battersea, then held by the Conservatives. 

The seat was one of several Conservative seats in pro-Remain areas that fell to Labour’s surprisingly strong showing in the election in the wake of the 2016 Brexit referendum. 

“No one really thought I could win here,” de Cordova says. “Obviously, Brexit I would say played a role in that I’m a strong Remainer.” 

De Cordova increased her majority in 2019 and last year’s general election. She sees strong continuities between serving as an MP and her previous role in the charity sector. She had been working when elected as the engagement and advocacy director for the Thomas Pocklington Trust, which supports blind and partially sighted people. 

“I didn’t grow up wanting to be a politician,” de Cordova says, of her upbringing in Bristol. “I’ve always had the desire to be making a difference. All of my work before becoming a politician centred around that – being that voice for the voiceless.” 

She links her work to her faith. She became a Christian in her late 20s and now attends Holy Trinity Clapham. The church is famous as the spiritual home of William Wilberforce and the “Clapham Sect” of early 19th century campaigners against the slave trade and other social evils. 

Her faith has led to her appointment as second church estates commissioner – the liaison between parliament and England’s established church, who answers questions in the Commons on behalf of the church. 

“My faith is an integral part of who I am,” de Cordova says. “It really is part of my values, my beliefs, my politics.” 

It becomes clear speaking to her that her objections to the policies of the government – and the Assisted Dying Bill, which many of her party colleagues support – are clustered around areas involving challenges to fundamental rights. 

She objects to the Assisted Dying Bill because she sees it as part of a steady erosion of disabled people’s rights. 

“The issue will have a hugely, hugely disproportionate impact on disabled people,” she says. “That, for me, is a no-no.” 

Provision for disabled people was “hollowed out” under the last Conservative government, she says. 

“That, for me, will always be the issue,” de Cordova says. “I want to campaign and fight for full equality for us.” 

She also views immigration issues through the prism of immigrants’ rights. 

Asked if she wishes the government took a less hostile tone on the issue, she replies: “From my perspective, when I think about immigration, I tend to think about it in a compassionate way.” 

She calls for the establishment of “safe routes” to ensure people fleeing persecution can claim asylum from outside the UK, without making dangerous Channel crossings. The government has shown no signs of introducing such rights. 

“Let’s think about immigration in a positive way,” de Cordova says, adding that her grandparents were immigrants to the UK from the Caribbean. “The Tories and the right have always tried to portray it as a negative. It’s not always a negative.” 

For de Cordova, the unglamorous role of church estates commissioner forms part of that pattern of advocating for the voiceless. 

The job entails dealing with every aspect of MPs’ questions about church life, including the status of historic buildings and other less obviously morally important questions. 

However, de Cordova, who was appointed a month before publication of the Makin Report on the church’s handling of abuse by John Smyth, is clear the church has urgent problems to resolve. 

The Makin Report has to be a “turning point”, she says. 

“I understand steps are being taken to address the challenges,” de Cordova says. “They need to set out over time how they’ll ensure such abuse never happens again.” 

The campaigning approach is part of de Cordova’s wider philosophy. She says she has faced many challenges as a result of her disability and tried to overcome them. 

“I want to ensure that I can break down the barriers for people coming after me, so that people don’t have to face those same experiences,” she says. 

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