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
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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Since Spring 2023, our readers have enjoyed over 1,500 articles. All for free. 
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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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