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
Culture
Digital
Film & TV
Work
7 min read

What my film about the prodigal son really means

Our relentless focus on productivity devalues the things that make us human

Emily is designer and animator at the Theos think tank.

An animated man runs through a jungle.
In Sync with the Sun.
Theos.

Watch now

In his 2021 book 4,000 weeks: Time Management for Mortals, Oliver Burkeman observes that an obsession with productivity doesn’t give us more control over our lives, ‘instead, life accelerates, and everyone grows more impatient. It’s somehow vastly more aggravating to wait two minutes for the microwave than two hours for the oven - or ten seconds for a slow-loading web page versus three days to receive the same information by post.’ 

With technologies like artificial intelligence rapidly accelerating our lives, this constant demand to squeeze more into our time is not only limited to the mundane tasks that we have to do and wish we didn’t. It seeps into what we want to do and indeed must do in order to flourish: creating art, spending time in community, and caring for others. The problem is that these things cannot be measured in productivity metrics because they inherently do not function in that way. How do you measure how ‘productive’ a conversation is? Or a work of art? Artists such as Vincent Van Gogh or Emily Dickinson didn’t see their influence in their own lifetime. 

The more we measure our lives in productivity metrics, the more we devalue the things that make us human, ultimately making our lives and the world around us increasingly artificial. This is the basis of my recent film, In Sync with the Sun, which is a short animation about the rhythms of activity and rest that are written into our world, and what happens when an obsession with productivity takes over.  

I wrote the initial script for the film after a period of burnout. I was fully in the “make the most of every second” mindset, which left me feeling exhausted and confused about where my value resides. In response, I began researching the sleep-cycles of various animals and I was liberated by surprising details such as the fact that lions, which we see as mighty and majestic animals, sleep for around 21 hours a day. Even creatures like jellyfish, which don’t even have brains as far as we know, still have cycles of rest. Every living thing thrives in these rhythms of activity and rest, even down to plants and minuscule organisms. Our whole world is built on this pattern, in sync with the sun. Yet for us humans, our rhythms have been broken by technology, leaving us confused about our limitations and what we should do with our short lives.  

The film begins in nature, deep in the jungle where some leopards are sleeping. But the tranquility is abruptly interrupted by the voice-over declaring, “the war against sleep began when artificial broke into the night.” Brilliant white light breaks up the deep blues and purples on screen, until the screen is filled with blinding white. I wanted it to feel like that moment you peer at your phone in the middle of the night - the pain of your pupils trying to adjust. If you think about it, for 99.9 per cent of human history, our eyes would have never had to do that - until now.  

Artificial light wasn’t powerful enough to change that. Instead, it’s given us an unquenchable guilt about how we use our time. 

With his invention of the light bulb, Thomas Edison was determined to banish the night, and the limitations it enforced on us. Edison was known for being fiercely obsessed with productivity and, as a result, was an anti-sleep warrior who believed,

“There is really no reason why men should go to bed at all.”

As someone living a century on, I find it baffling to imagine that humans should eradicate sleep entirely. Perhaps because just 100 years later we are seeing the results that sleep-loss and over-working can have on our physical health and wellbeing. Maybe we cannot supersede nature after all, since we are an embedded part of it. It seems that “Sabbath" rest is written into our world and into our humanity. Artificial light wasn’t powerful enough to change that. Instead, it’s given us an unquenchable guilt about how we use our time. Now we decide when the day ends, so whoever can rest the least wins. 

The battle is still raging; incandescent bulbs only set aflame that root desire to be increasingly productive. The hamster wheel is spinning uncontrollably, and we must keep up. So, what do we do? The attempt to remove the limitations outside of us has revealed that they are in fact inside of us too. Therefore, the only way to keep up is to remove the human from the hamster wheel altogether. The failure of artificial light leads to the birth of artificial minds.  

 As a creative, this is what frustrates me most about artificial intelligence; that it is mostly being driven by this quest to bring everything under the reign of productivity. It goes without saying that this is greatly needed in some areas of society. Just like artificial light, it can and will do a lot of good in the world. However, when the obsession with productivity is prioritised over human flourishing, that’s when we know there is a big problem with how we view our lives.  

Thinking back to the examples of Van Gogh and Emily Dickinson; what is lost when we don’t allow space for artists, carers, mothers, or any skilled role that requires an element of patience? For me personally, I can’t force creative inspiration, instead it comes at me, often at times when I’m not looking for it. Similarly, sometimes that inspiration leads directly to an instant idea, but most often it’s a vague idea I jot down to which later life experiences and opportunities then build onto, forming it into something bigger and more in-depth. This could be compared to a role or situation that requires relationship building. Sometimes there are moments of instant bonding and “productive” progress in relationships, but it’s often more complex where external experiences or changes, which are outside of our control, may unexpectedly deepen understanding between people after long periods of frustration. 

In my animation, I used the metaphor of a butterfly to illustrate this sentiment. After the character realises he is not made for a life of relentless productivity, he steps out of the black and white skyscraper into the lush wilderness. A butterfly lands on his productivity badge and the voice over says, “You’re not a machine.” I imagine the Creator saying this to the loved creation. Creatures like butterflies seem completely unproductive to our human standards. They take weeks to form in the chrysalis and exist in the world for less time than that. Yet they are a source of wonder and beauty for anyone who has the privilege of seeing one up close. A reminder that nature is not in a rush. Where AI is concerned, however, speed and profit are the focus of desire. But looking at the world around us - that we are a part of - it’s clear that not everything can or should be valued by these limiting metrics alone. 

The overarching narrative of In Sync with the Sun is loosely inspired by the biblical story of the prodigal son. The main character has travelled far away from his home in pursuit of success, and he eventually realises that this master does not love him. At the end he comes home again, finding connection in community and in the good rhythm of productivity and rest that he came from. I wanted the film to address the issues that an unhealthy obsession with productivity can cause, and instead evoke a desire to accept and live more in sync with the boundaries and rhythms that are embedded in the natural world we are a part of.  

The film ends with the line, “The only thing that can stay awake is not awake at all.” In the midst of the changing world of AI, humans might be tempted to measure our productivity levels in comparison to these machines. However, technologies always raise the productivity bar higher and higher, and one day we need to accept that we simply aren’t going to be able to reach it. We don’t sit apart from nature like technology does, so let’s stop resenting that, and instead celebrate it. To quote Oliver Burkeman again,  

“the more you confront the facts of finitude instead - and work with them, rather than against them - the more productive, meaningful and joyful life becomes.” 

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