Article
Assisted dying
Care
Comment
Ethics
6 min read

It's a dreadful thing when we regard the disabled, the dependent, and the different as disposable

A MND sufferer reflects on the historic vote to legalise assisted dying
A crowded House of Commons awaits a vote.
MPs await the result.
Parliament TV.

I can’t say I’m surprised, but I am disappointed. The euthanasia juggernaut has been gathering momentum throughout the western world. In this country it appeared as the Voluntary Euthanasia Society, to be later rebranded as the richly endowed Dignity in Dying. It’s been beavering away for decades, with well publicised personal stories and legal cases which have been very effective in persuading general opinion that dying is frequently nasty and that we should have the right to choose when and how to die. That organisation resisted using the term ‘suicide’, which is what they advocate, realising that it opens up the accusation of devaluing life. So, I’m not surprised that MPs have, after an impassioned debate, by a narrow majority, eventually given way to the pressure.

A fortnight ago, I had my annual check-up at the motor neurone disorder clinic and subsequently received the GP letter.

“Date seen 02/06/2025…  Diagnosis (this visit) Primary Lateral Sclerosis…  Symptom onset 2000”.

I well remember the year 2000, my voice deteriorating, my balance starting to fail me, resulting finally a year later in the consultant’s verdict, “You have a motor neurone disorder.”

I knew what that meant as at the time Diane Pretty, backed and publicised by the Voluntary Euthanasia Society, was fighting through the courts as far as the European Court of Human Rights for the right for her husband to take her to commit suicide in Switzerland in the Dignitas “clinic”. It was a frightening time to receive an MND diagnosis, and it still is today. The normal progression is both swift and relentless. However, the Motor Neurone Disease Association does say “in the majority of cases, death with MND is peaceful and dignified”.

At that time I could have been depressed; I could have known how much care I would need, how much it might eat into our savings; I could have feared the physical and emotional toll it would take on my wife; I could have been desperate about the future. Certainly I was vulnerable. Fortunately, I was of an optimistic nature and had plenty of reasons for living.

But it could easily have been otherwise. I might well have panicked and opted for a doctor to help me die, if the law debated in the Commons today was in effect. Then I wouldn’t have seen two sons getting married nor grandchildren being born and growing up. I would have missed out on twenty years of an increasingly restricted but paradoxically fulfilled life.

Of course you might argue that I’m ‘lucky’ to have, as became clear over the years, my exceptionally rare and slow form of MND, but I wasn’t to know that, as indeed none of us do despite our doctors’ best predictions. Indeed I am lucky to be alive.

However it was my experience that brought me face to face with the fact of my own mortality and the issue of assisted dying. There seemed to me to be four main drivers. First, the desire for autonomy; second, the insistence of independence; third, a sort of compassion, and fourth, finance. There were two further factors: fear of death and fear of being “a burden”.

Autonomy

It’s a modern western concept that humans are by nature autonomous beings, meaning that choice is an inalienable right. I once co-wrote a book with the title, I Choose Everything, based on a quote of Therèse of Lisieux. It was from a childhood incident, but it did not mean she reserved the right for total autonomy, but rather the opposite. As she later wrote, “I fear only one thing: to keep my own will; so take it, for ‘I choose all!’ that you (God) will!”

Absolute choice is not a virtue. Choosing where to drive your car is not a virtue as it can endanger other road users. There are many limitations on freedom or taboos that protect others in a society. Taking someone’s life directly or indirectly is a universal one. Individuals submitting to a higher authority holds a community and a nation together.  

Independence

Another related modern heresy is the ideal of independence. How utterly fatuous this is! None of us is born independent. We’re born relational. All of our lives we are interdependent. Being cared for is not to be lacking in dignity. Being 100% dependent does not deprive someone of their human dignity. Even the most disabled person is a human being made in the image of God. It is a dreadful thing when a society regards the disabled, the dependent, the different, the mentally deficient and the declining as inferior and potentially disposable. Of course the advocates of the Bill would vehemently deny that they or it implied any such thing. Yet the history of the twentieth century bears witness to how subtly a society can be seduced by the pernicious philosophy of eugenics.

Compassion

It is a modern paradox that medical advances have contributed to the illusion that death is to be feared. Yes, death has always been the last enemy and, yes, we hope it will be peaceful. But we shall all die. Contrary to received wisdom, the compassionate response to that fact of life is not to “put someone out of their misery”; compassion (literally suffering with) means to be with them in their suffering. This is what good palliative care provides, making the end of life dignified, worth living and even pain free.

As former Prime Minister Gordon Brown pertinently asked, “When only a small fraction of the population are expected to choose assisted dying, would it not be better to focus all our energies on improving all-round hospice care to reach everyone in need of end-of-life support?”

Finance

Of course palliative care costs more than facilitating patients to take their own lives. According to the Daily Mail “Legalising assisted dying would save the taxpayer £10million in NHS costs in its first year, rising to £60million after a decade, according to grim new estimates published by the government.” The estimates are indeed grim, but also attractive to politicians straining to balance the national budget. Yet they raise the fundamental question: do we want to live in a society which values money over life?

Which is the most fundamental of all the issues: the sanctity of life has been a core principle central to all the Abrahamic faiths, which undergird our culture and way of life. In the words of Job on hearing of the death of all his children, “The Lord gave and the Lord has taken away.” The start and end of life are not ours to determine. We lack the wisdom of God.

Apparently the majority of our parliamentarians have decided to place that prerogative into the hands of suggestible and distinctly fallible humans beings. We or our children shall, I fear, reap the whirlwind.

As an afterthought I have a number of friends who disagree with me, often after personal experience of watching a loved one die. I sympathise and I suppose that I must be glad for them that the MPs have represented their wishes. And I would never condemn them if they decided to choose the route of assisted dying for themselves. I hope they won’t have to.

Meanwhile I trust that, when the Bill comes to the upper house, their Lordships will fulfil their function of revising it wisely and effectively. They certainly have relevant expertise, for example in the field of palliative care - which is in danger of being squeezed following this bill.

Support Seen & Unseen

Since Spring 2023, our readers have enjoyed over 1,500 articles. All for free. 
This is made possible through the generosity of our amazing community of supporters.

If you enjoy Seen & Unseen, would you consider making a gift towards our work?
 
Do so by joining Behind The Seen. Alongside other benefits, you’ll receive an extra fortnightly email from me sharing my reading and reflections on the ideas that are shaping our times.

Graham Tomlin
Editor-in-Chief

Article
Comment
Identity
Nationalism
5 min read

Which nation are you flying the flag for?

Flag raisings, Ed Sheeran, and my split national identity

Juila is a writer and social justice advocate. 

A Union Jack is draped over a railing, next to a red flag saying Jesus.
A flag demonstration, Portsmouth.
TikTok.

Flags are flying from lamp posts around England. It’s newsworthy here – and yet reports barely note that for those of us from Northern Ireland, we know something of this. A couple of weeks ago, the backlash was loud when Ed Sheeran declared himself ‘culturally Irish’, attributing greater significance to his family’s heritage than being born and raised in England. When it comes to signs of identity, things can quickly get personal. 

In my family – Northern Irish mother, English father, two daughters born in London but most of our childhood spent living just outside Belfast – we’ve been known to debate points to tot up our national identities over the dinner table. Does a place of birth outweigh the school years? When does formation finish – on turning 18 or do the months away at university count for anything? Does it matter how our mixed DNA actually expresses in our hair, our eyes, our stature?  

It’s a game and it’s our deeply felt reality. It’s the years spent with my schoolmates teaching me to correctly say ‘how now brown cow’ – and the arrival in England to find people couldn’t understand me saying my own name. It’s the stomach churn I still feel when I see flags flying, having grown up in a country where banners signal who is in – and therefore who is out. It touches on the questions of belonging and home.  

Irishness seems to travel well. The popularity of the island’s artists and art (from Paul Mescal to Derry Girls) are all signifiers of this cultural moment. But being Irish has always carried more cachet when I’ve been abroad, and I confess that when it has suited, I have led with my more ‘palatable’ half (or quarter or… the family maths is still up for debate). It’s convenient – but there’s also a discomfort in the enduring appeal of ‘Irishness’ outside of the island. It’s an ‘otherness’ that evokes intrigue and warmth, rather than fear. Difference that is more than acceptable, sometimes desirable. Distinct enough to be interesting but unthreatening for often being associated with white skin. 

Underneath the light-hearted arguments of our dinner table is a question of formation. Ed Sheeran attributes his sense of being Irish to the things that he feels have shaped him. It’s in being away from Belfast, living in England, that that I have seen more clearly the ways that Irishness has formed me. Watching Derry Girls with my English husband I freely laughed at what I assumed were universal jokes, only to have to hit pause and explain them. The show unearthed memories – not bad, just not often recalled – of Bill Clinton’s historic visit and the ‘across the barricades’ style gathering of primary schools from different sides of the community. 

Signs and symbols matter. I recently rewatched an episode of tv show, The West Wing, in which the US flag may – or may not – have been burned as part of a trick by magicians Penn and Teller. A media maelstrom follows. Whether or not the flag burned matters, as does the symbolism of this act taking place in the White House, itself an emblem of national identity and power. 

Reflecting on the news, I find myself thinking about the signs of a different kind of kingdom, one that transgresses national borders. In the Bible there's the story of one man who died once for all the world. And in dying, he brought forth his kingdom – one that crosses boundary lines to be truly global. The signs of this kingdom are not division or disconnection but peace and justice, joy and comfort, healing and presence. 

This is not about homogenisation. It’s not about the erosion of cultures, but about the beauty of all represented. As Harvey Kwiyani, a theologian from Malawi, puts it: “We are all welcome to God’s kingdom with our unique cultures. Being in the kingdom of God does not erase our cultural differences… The kingdom of God finds its fullest expression in intercultural mutuality. It is a multicultural kingdom.” The kingdom of God in all its richness – that’s a tempting proposition.  

It’s easy to see that we aren’t living in the fullness of this yet. But the world is not a static place. One metaphor used to describe the kingdom of God is yeast; living cultures filling the dough, making it rise. This is an image that is expansive, generous. The kingdom isn’t wholly realised yet, but we can see more and more of it. 

And like the yeast, we have a role to play in culture changing. As Graham Tomlin wrote following debates about ‘Englishness’, belonging to the kingdom of God means we have an identity not defined by where we live. Being part of this kingdom, we also become active participants in it. Formation is not just about us; we get to play an intentional role in the formation of a kinder world, in the coming of God’s kingdom. In the midst of fear and uncertainty, our ability to engage in such life-giving action offers a concrete hope.   

This is not a defensive position, but a brokering one. The kingdom is bigger than our individual lives, churches or communities; recognising this helps us to break out of a fortress mentality. So far, this century has been marked by fortification. As well as the raising of flags, there have also been walls. At the end of the second world war there were fewer than five border walls; there are now more than 70, most of them built in the last two decades. But the kingdom of God offers a view of home that is not about defence, not about perimeters, or even places. It’s a relationship with God, who made and sustains this world, who crosses the divide to meet each of us. In meeting him, we can partner together in seeing more of his kingdom on this earth.  

Anthropologist Andrew Shyrock defines sovereignty as “manifest in the ability to act as host”. Or to ground it in the day to day: to be able to offer a cup of tea. Perhaps some of the anger about Ed Sheeran’s claim is because of what it seems to either take or reject, pulling towards one nation while turning a back to another. Belonging to the kingdom of God invites us to think beyond what we can have to how we can intentionally serve. It has room to honour heritage and at the same time, it bends forward towards eternity. In the day to day, I find this a comfort: to see formation as not just about the past, but also the power of creative act after creative act in shaping the world that’s coming. 

Support Seen & Unseen

Since Spring 2023, our readers have enjoyed over 1,500 articles. All for free. 
This is made possible through the generosity of our amazing community of supporters.

If you enjoy Seen & Unseen, would you consider making a gift towards our work?
 
Do so by joining Behind The Seen. Alongside other benefits, you’ll receive an extra fortnightly email from me sharing my reading and reflections on the ideas that are shaping our times.

Graham Tomlin
Editor-in-Chief