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
Character
Comment
Education
Fun & play
5 min read

Is your child school ready?

What really matters as a child develops
A teacher looks on as a young child concentrates on writing.
Department for Education.

In the coming weeks, those little critters will start to emerge, easily identified by their autumn plumage of coloured sweatshirts and oversized backpacks. Anxious parents and caregivers can be spotted, shepherding their young along paths and pavements, casting worried glances left and right at the pelican crossings. Listen carefully and you may hear the squeak of uncomfortable new shoes and juveniles complaining about the wearing of a coat, as adults of the species re-establish social bonds with cries of, “Back to school already, I can’t believe how fast it’s gone!”   

As they congregate upon the tarmac staging ground, some will be taking part in this ritual for the very first time. Neophytes who have maintained social bonds throughout the pre-school years might be seen to greet their fellows cordially, “Did you have a good summer? Can Flo make it to Izzy’s party?” Others will stand alone, scanning the playground for a half-remembered face from the bygone days of antenatal classes. That was only five years ago, but it feels like a millennium. The faces are changed; everyone looks more…tired. 

The world has been turned upside down in those past five years. It’s been said so often that it is almost trite, but nonetheless true: nothing prepares you for becoming a parent. In the UK, new parents increasingly raise their children without the immediate support of extended family, coupled with the tyrannous expectation that one will retain one’s employment rank and contribution to the labour market alongside this new and 24/7 full time job of looking after baby. The Key Performance Indicators of parenting are ambitious. Deliverables for the first five years include toilet training, instilling speech and language skills, establishing basic recognition of 26 alphabetical characters (including the child’s ability to recognise the alphabetical sequence that spells their own name) and ensuring the recognition of and (ideally) ability to correctly sequence numbers 1 to 20.  If your child can do all of this by the age of 5, whilst also learning not to punch, kick or bite other children, not to eat food off the ground, and not to stick rocks up their nose, then congratulations! Your child is school ready

It may comfort some readers to know that very few 5-year-olds manage to hit absolutely all of these milestones. As the education secretary, Bridget Phillipson, commented recently – parenting is too hard. She is working to establish a new iteration of Labour’s ‘Sure Start’ programme (rebranded as ‘Family Hubs’) to offer parents more support in the community. As part of her rationale she states, “When one in four children are leaving primary school without having reached a good level of reading, then something’s gone seriously wrong in those early years that has to go beyond the school gate.”  

Whilst I’m keen to see more support for new families – I’m intrigued by this particular rationale for it. Ability to read well by a certain age seems an unlikely metric by which to measure whether a child has had a positive experience of childhood; it appears indicative of what autism-researcher Anne McGuire calls “The normative time of childhood,” in which the success is measured against an imagined future of economically productive years. By this metric, if a child learns to read at a prodigiously young age this is taken as an indicator that they will enter the workforce with greater velocity than their peers, essentially that they will have “more future-yet-to-be-realized” than those around them. McGuire writes, “In a neoliberal regime where ‘time is money’, the child is figured as ‘time-rich’ and so represents a good investment opportunity indeed.”  

McGuire’s analysis is piercingly accurate of how we often talk about our children, despite knowing all too well that it represents a fallacy. There are multitudinous stories of adults who have gone on to make staggering contributions to human flourishing, despite being placed (literally or figuratively) under the dunce’s cap at school. But even without focusing on those who go on to excel, those who attract fame, fortune, or both, we don’t have to look far to find cause to re-evaluate what it means for a child to be school ready.  

My son’s year group recently finished their own primary school journey, and a quick glance through some of the leavers’ books reveals that children are very good at valuing each other for what is here in the present, without recourse to an imagined economic future. As children wrote goodbye messages for each other they said things like,

“Thank you for always having such good ideas for games to play.”

“You helped me on my first day when I got lost.”

“You’re a great house captain and you always help the teacher.”

No one was particularly keen to predict fame and fortune for the future of their friends, and there was an understandable indifference towards academic milestones. As a literary corpus, the leavers’ books were testament to the old adage that people will not remember you for what you say or do but will remember you for how you make them feel.  

One the subject of childhood, Jesus once said something that defies easy explanation. He was out, teaching in the open air, surrounded by crowds of adults including important religious leaders and wealthy individuals who wanted to ask complex and deep theological questions, but in the midst of it all there were parents bringing their children, elbowing their way to the front of the crowd to ask Jesus to pray for their little ones. When some of Jesus’ followers tried to usher the children away, Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.” The precise meaning of this utterance has eluded thinkers and theologians for centuries – what exactly is it about childhood that Jesus was alluding to?  

I wonder if it is something about the capacity of children to live in the immediate, and therefore to value what really matters – justice, kindness and friendship. In primary school, yes it helps in some ways for children to arrive aged 5 with a certain command of the alphabet and the ability to finish the day wearing the same set of underwear that they arrived in. But perhaps what matters more is children arriving ready to enter the fray of friendships – being kind, being helpers, having the self-confidence to know that they have something to give to the learning community that they are joining, whatever their learning speed might be. Such things are gloriously untethered to economic potential or a future-yet-to-be-realized, but they are closely tethered to a child’s understanding of themselves as a valuable and important person. If Labour’s intention to offer new parents more help in the community goes some way towards communicating to our pre-school children that they have that have – and will always have – value, regardless of what they will or won’t attain to academically or economically, then it will help many more children reach the milestone of being school ready.  

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