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.

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Article
Books
Comment
Digital
Distraction
5 min read

Reading is the perfect act of rebellion in our screen society

A fortunate meeting with the right text works an unfathomable, transformative magic.

Rachel is a reader and writer, a coach, and an educator. 

A young boy pores over a book tracing the lines with a finger.
Michael Parzuchowksi on Unsplash.

Every year out of the 22 years that I have been teaching, there has been at least one child, increasingly several, who lay down the gauntlet in September. They steady their feet and ball their fists before sizing up to inform me that they hate reading, they always will, no matter what I do, so there!  

I likely raise an eyebrow and one side of my mouth; I don’t rub my hands together but the flame inside me leaps as I accept this familiar challenge. I’ve faced it so many times before and have almost always emerged the victor come July.  

The secret is knowing great books, knowing the individual reader and knowing how to make that perfect match.  

To read or not to read? That is the perplexing and troublesome question bothering many a teacher and (in my opinion) not enough parents in the present day. Need convincing? Though numerous research studies have evidenced significant benefits to cognitive function, brain health, physical longevity, mental health, stress relief, empathy, intelligence and sleep patterns, the National Literacy Trust's 2024 survey of over 76,000 children found that reading for pleasure saw an 8.8 per cent drop in just one year from 43.4 per cent to a worryingly low 34.6 per cent. This represents the lowest percentage since records began in 2005. Furthermore, trends are much the same throughout the adult population. It’s perhaps not hard to work out why picking up a book has declined in popularity. In our high-speed world of fleeting concentration, where bright, moving images flicker and fade, the monochrome, demanding, inanimate pages of a book can seem dull by comparison.  

But a little effort can be hugely rewarding. Indeed, imaginatively creating, rather than consuming digital images, is the perfect act of rebellion in an utterly conformist, screen-based society. It is counter-cultural and subversive to sit awhile and demand that you bring your undivided attention to an effortful activity. To switch off devices and work your way into the unexplored possibilities of your own mind through the pages of a good book.   

Teaching this to children has been my mission through 22 years of teaching English. I consider myself one of the stalwart guardians of the flame. The responsibility weighs heavy, urgent, and terrifying as resistance increases year on year. I obsess over it, feeling rationally afraid that if I stop breathing onto those embers for even one moment, the opportunity for revival will be lost…forever.  

So, what of these books? What are we guarding? What is this paper-based treasure? 

Imagine, for a moment, the sensational day when some tech billionaire creates a functioning portal or time machine, facilitating transportation back to the Tudors or the Trenches at the touch of a button.  

Consider the mindless jostling to board a new rocket destined for a dystopian future not too distant or dissimilar from the present. Picture the frantic rush to buy personal transportation devices to enable visits to the rainforests of Guatemala, the Arctic glaciers or tropical island shores at a moment’s notice.  

Imagine the insatiable sales of holograms masquerading as friends next to whom we could sink into an armchair creating free access to the minds of the rich and famous.  

There would be jostling, posturing and frantic networking to get in on the action. That billionaire could set his price. Millions would be hastily spent to gain access. 

But when that experience can be easily bought for somewhere in the region of £7.99 and comes in a 20x13cm rectangular paper format with monochrome printed pages, the levels of sensation and desirability dramatically drop through the floor.  

In a world of fakery, a written encounter with truth transforms. Where empathy and compassion are eroded, accessing the imagination redeposits. 

We fail to see that our books are indeed those time machines, transportation devices and conversations with wise giants. We were gifted such possibilities at the time of the printing press. A well-chosen book should never leave you the same at its last word as you were when encountering the first. Between those two covers was a moment in time when you were profoundly and fundamentally changed for eternity. You acquired new knowledge, encountered new people and places, travelled through time, experienced ranging emotions and developed thoughts and ideas in conversation with the greats. Something within you was transformed for good or for ill with your choice of book. If nothing happened, you need help choosing. 

Content matters also. We should feed our minds as carefully as we should feed our bodies.  

In a world of fakery, a written encounter with truth transforms. Where empathy and compassion are eroded, accessing the imagination redeposits. Where loneliness and depression devour, explorations of good character and relationship will nourish. Where fame and power corrupt, examples of service and humility will heal.  

Good books will always nourish the soul. 

Whatever is true, noble, right, pure, lovely, admirable, excellent or praiseworthy – we should think on such things. This is why running our eyes over good words and filling our ears with exemplary voices is essential.  

It is nothing short of a miracle that I can consult the wisdom of C.S. Lewis, the brave imagination of Katherine Rundell, the compassion of Maya Angelou and the teaching of Tom Wright in the silent space surrounding my armchair. I can equally learn from those who knew Frederick Douglass and those who knew Jesus not as figures in history but as a friend and teacher, a person of flesh and bone, in their literal time and space. They saw his face, they heard his voice, they felt the warmth of his hands on their skin, and I can know about it from their contemporary writings. I can consult equally with the writer of those ancient songs of wisdom that are the Psalms and the writer to the citizens of Philippi and know that between the words on those pages lies a moment when I am profoundly and fundamentally changed for all eternity.   

Wise words are powerful, and they endure. They outlive a lifetime. They are miraculous and accessible. The world needs them. 

So, to read or not read? The question is significant. It defines humanity. We guardians know that those last glowing embers must never be allowed to die. To read is a gift. It is noble work. It is a powerful and necessary act of rebellion in a world so out of touch with the Word. 

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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.

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