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
Freedom of Belief
Politics
5 min read

The UN promised freedom of belief — but 80 years later, it’s still elusive

Flawed, fragile but still vital to those without a voice

Steve is news director of Article 18, a human rights organisation documenting Christian persecution in Iran.

Trump address the UN.
Trump addresses the 80th session of the United Nations General Assembly.
The White House.

It’s been 80 years since the United Nations was founded, at the end of the Second World War, primarily in an attempt to avoid a third global conflict. 

So on that score, at least, I suppose one must accept that the UN has achieved its primary objective. But why, then, does the overall feeling towards the organisation today seem negative? 

The UN’s founding charter outlined three other major goals alongside maintaining “international peace and security”: developing “friendly relations” among nations; international cooperation in solving economic, social, cultural or humanitarian problems; and respect for human rights and fundamental freedoms, “without distinction as to race, sex, language or religion”. 

Given that the UN is comprised of 193 countries, it is perhaps little wonder that “friendly relations” and “cooperation” between all sides have not always been forthcoming, and that instead clear cliques have formed between Western countries on the one hand, and much of the rest of the world on the other. (Perhaps the clearest such clique at the moment is the 2021-founded “Group of Friends in Defence of the UN Charter”, the identities of whose members - China, North Korea, Iran, Russia, Venezuela, et al - may lead one to wonder what exactly it is in the UN charter they wish to defend. Short answer: “sovereignty”, code for doing whatever they wish, without interference.) 

As for the pursuit of “human rights” - my primary focus as an employee of an NGO - perhaps the greatest obstacle remains the lack of a truly united consensus over which rights should be included in the definition. 

The closest that the nations of the world have come to an agreement on this score was the adoption in 1948, three years after the founding of the UN, of the Universal Declaration of Human Rights (UDHR), which was backed by 48 of 58 member states at the time, but which failed to secure the support of others, including apartheid South Africa, the former Soviet bloc, and Saudi Arabia. 

A primary objection in the case of Saudi Arabia was to Article 18 of the declaration - the bit about religious freedom and which includes the claim that everyone should have the right to change their religion or belief, an issue that remains problematic for many of the not-so-united nations of the world today. 

The UK, meanwhile, was happy to ratify the UDHR but expressed frustration at its lack of legal force, and it was nearly 20 years before another treaty, the 1966 International Covenant on Civil and Political Rights, attempted to correct this.  

But while the 174 signatories to the ICCPR - including Iran, Russia, Cuba and China (though the latter two without ever ratifying the treaty) - are at least on paper legally obliged to uphold this international treaty, the challenge of enforcement remains. For example, while the signatories of the ICCPR are obliged to provide freedom of religion as defined by Article 18 of the covenant, which closely resembles the same article of the UDHR, few practical tools exist to hold to account any state that fails to meet its obligations.  

In the case of persistent violators like Iran - the focus of my work - it seems the best we can currently hope for is to see a “resolution” passed by the majority of member states, outlining the ways in which the particular violator has failed to provide its citizens with the religious freedom (among other things) that should be their right according to the international treaties it has signed, and calling on them to do better.  

But when pariahs like Iran can merely continue to deny that such failures exist, call them “biased” and “political”, and all the while prevent access to the country to the independent experts (“Special Rapporteurs”) best able to ascertain the veracity of the allegations, such “resolutions” can at times appear rather hollow. 

At the same time, for advocates of human rights in non-compliant countries like Iran, the public shaming offered by such resolutions at least provides an opportunity for otherwise voiceless victims to be heard on the international stage. And when real change inside the country can sometimes appear nigh-on-impossible, you tend to take the small wins, such as hearing the representatives of member states mentioning the names of individual victims or groups in the public arena. 

Many mentions are made, for example, about the plight of the Baha’is during every UN discussion of human rights in Iran, and while it is less common to also hear about my own area of interest - the persecution of Christians in Iran - there is usually at least one mention, which for us advocates (and we hope also the victims we represent) provides some comfort and hope for future change. 

So 80 years since the establishment of the UN, it is clear the organisation has much room for improvement, but I remain persuaded by the argument that if we didn’t have the UN, we’d have to invent it. 

“Friendly relations” - a helpfully loose term - between our disunited nations will always be a challenge, but increased economic ties globally over the past 80 years have also provided potential pressure points for those who fail to follow the rules. (If, for example, Iran wishes to see sanctions removed, Western countries can and should continue to demand improvements in the area of human rights.) 

As for the UN’s endeavour to see increased “respect for human rights and fundamental freedoms”, the question of what such rights and freedoms should entail will continue to be debated, with persistent areas of challenge including not only religious conversion but also abortion and same-sex relations. 

It is not uncommon, for example, to hear representatives of Muslim states such as Iran questioning what Western nations really mean by “human rights” and accusing them of using the term only as a “pretext” for their own “biased” agendas. 

But for all its challenges, 80 years after its establishment the UN continues to offer the only forum today where countries of contrasting beliefs can come together to discuss their differences on the world stage.  

Whether that is a worthwhile exercise remains a matter for debate, but to the degree that it is, the UN remains the primary channel through which such conversations can take place. 

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