Article
Assisted dying
Death & life
4 min read

Behind the data: the social messages physician assisted suicide sends to the autistic

If intense suffering caused by society drives autistic people to seek assisted death, then society has failed.
A hand rest gently on another outstretched hand.
Alexander Grey on Unsplash.

Statistically speaking, autistic people are far more likely to die by suicide than non-autistic people. They are also, statistically speaking, far more likely to die by physician assisted suicide than non-autistic people, in countries where this is allowed.  

For example, in a study of 927 people who sought physician assisted suicide in the Netherlands (where this is legal) 39 of them were autistic. That’s about four per cent, but the prevalence of diagnosed autism in the Netherlands is only one to two per cent. The researchers go on to note that 21 per cent of these 39 people cite autism or intellectual disability as the “sole cause of suffering” that had prompted them to request assistance to die.  

I don’t like speaking statistically. For a start, 21 per cent of 39 people is 8.19 people, which raises obvious questions. A little digging reveals that what the researchers mean really is eight people. Eight people with eight unique stories that include an account of autistic suffering so intense that they asked for help to end their lives.  

But we do not have those stories, not really. Included in the report are carefully anonymised excerpts from the physicians’ notes, and this is the nearest that we can get.  

‘The patient suffered from his inability to participate in society [ … ] [He] was not able to live among people, because he was easily overstimulated. This made him isolated’ (2019 (22), male, 70s, ASD) 

‘The patient had felt unhappy since childhood and was persistently bullied because he was just a bit different from others [ … ] [He] longed for social contacts but was unable to connect with others. This reinforced his sense of loneliness. The consequences of his autism were unbearable for him [ … ] The prospect of having to live on in this way for years was an abomination to him and he could not bear it’ (2021 (26), male, 20s, ASD) 

The debate about legalising physician assisted suicide in the UK is ongoing, and the British Medical Association have provided a helpful guidance document which sets out the main arguments, both for and against, without making a recommendation either way. In the document, they observe that the reasons people ask for assisted suicide are predominantly personal and social, not clinical, and also that “laws send social messages.” I agree that laws do that, and I also think that those seeking assisted suicide send social messages too.  

For example, even just from these two tiny excerpts, I hear that a life worth living is one where people can participate in society and have social contacts, even if they are a “just a bit different from others.” It would be good to hear more. It would be good to sit down over a cup of coffee with each of these two men and ask them all my questions about their lived wisdom when it comes to autism.  

I could ask “2019 (22), male, 70s, ASD”: 

What causes the overstimulation - are there places where you don’t feel that?  

Can we create more such places for autistic people to socialise?  

And I could ask “2021 (26), male, 20s, ASD”:  

What makes you feel different?  

What kind of social contacts and connections do you think that you are looking for?  

But of course, I can’t do that, because these two men have been assisted to die.   

The word ‘welcome’ is striking to me here. What does it mean to welcome someone, not to merely include or tolerate, but to really welcome someone. 

When approached for comment, autistic theologian Claire Williams said:  

‘There is something of a personal and social tragedy reflected in these cases. If we understand that much of the difficulty that autistic people suffer is caused by society – as per the neurodiversity paradigm – then it is the case that these two nameless men were failed by society. They felt that their lives could not find a place in an unwelcoming world. It is, of course, their choice to end their lives but I do also think that God chose to start their lives and finds them to be infinitely valuable. They were both made in God’s image and reflect something of it. That they felt there isn’t a place for them that is suitable is a tragedy because society should do better to welcome them.’ 

The word ‘welcome’ is striking to me here. What does it mean to welcome someone, not to merely include or tolerate, but to really welcome someone, even if they seem ‘a little bit different from others’? Dr Léon van Ommen, another theologian who writes about autism, suggests that it is a matter of making oneself and one’s resources fully available to that person, to the point where they feel that you belong to them. This is not to promote relationships with unhealthy power dynamics, but to highlight that when a person feels truly welcomed by another, they feel the opposite of owing a debt or being a burden – they feel they are of value, that you would be lacking something without them.  

I feel we are lacking something without you, “2019 (22), male, 70s, ASD”. And I feel we are lacking something without you, “2021 (26), male, 20s, ASD”. Not to forget the 37 others who are a little like you. We can pause to reflect on the social messages that you have sent, what you are teaching all of us about what it means to live a “good” life. But I am sorry that you have all died now and we cannot hear more.   

Whether people in the UK should be able to choose physician assisted suicide, I, personally, am not yet sure. Like the BMA, I see and respect the very good arguments both for and against. But eight people have chosen physician assisted suicide due to autism or intellectual disability, and when it comes to the social messages that sends, I feel compelled to sit down and listen.  

Article
Creed
Death & life
Easter
Film & TV
9 min read

Harry Potter and the mysteries of death

Horcruxes and our digital consciousness

Jonathan is a priest and theologian who researches theology and comedy.

Hermoine rests her head on the shoulder of Harry Potter.
Harry and Hermione at the grave of his parents.
Warner Bros.

A couple of years ago I had a conversation with some friends that has stuck with me. One of them is a palliative care doctor, and we were discussing medical trends which seek the extension of life at all costs. My friends are Jewish, and we as were comparing religious notes, it was unsurprising that they asked me: "well what do Christians think about death?" 

I replied, without really thinking: "Well, death is the enemy that is defeated." Somewhat to my surprise, their response was quite negative. "Oh, I don't like that idea. That pushes us towards denying our mortality, and trans-humanism, and the inability to let aged relatives go. We need to become better at welcoming death, at recognising it as part of our humanity." 

And as I groped to try and explain why that wasn't quite what I meant, the best analogy I could find for articulating what Christians think about death came from Harry Potter. And in the years since that conversation, it is still the best analogy that I can find to talk about mortality. 

So, here is the version of what I wish I had said. 

The Harry Potter books have many themes, but above all they are about death. That may sound unlikely for a series of books apparently aimed at children, but the evidence stacks up... 

The main character is an orphan, and the majority of people he comes close to will die across the seven books. (Now seems as good a time as any to mention that the rest of this article will basically all be spoilers, so maybe stop now if you've been putting off reading the books for the last 20 years. I'm also going to assume you are at least reasonably familiar with the plot). 

Harry's life is defined by the death of his parents and his own close shave with mortality as a baby, and as the books continue the body count gets almost ludicrously high. 

Indeed, the author J.K. Rowling has said that Harry is "the prism through which I view death in its many forms." 

Unsurprisingly, given how central the theme is, there is a certain amount of explicit reflection on death, even if it is somewhat vague. Thus, we find that: "to the well organised mind, death is but the next great adventure." Dying hurts not at all, but is "quicker and easier than falling asleep." Those who die can "go on," perhaps by "boarding a train." 

If all of this sounds a touch sentimental and the sort of thing that might appear in bad funeral sermons, it is paired with descriptions of grief that are visceral and deeply moving. (I may have cried more than once whilst doing the "research" for this article). 

But where the discussion of death gets really interesting, at least to me, is in the plot, and the metaphysics that underpins it. By metaphysics I just mean the whole picture of the structure of reality that makes the world of Harry Potter work. 

And in this metaphysics we find that death is indeed an enemy. This becomes clear partly through the sheer excruciating depiction of loss that runs through the books - how could something that causes this much pain be anything but an enemy? - but in book seven it is also made explicit. 

In one of my favourite moments of the whole series, Harry stands before his parents' gravestone, and reads the epitaph: 

'"The last enemy that shall be destroyed is death"... A horrible thought came to him, and with it a kind of panic. "Isn't that a death Eater idea? Why is that there?" 

"It doesn't mean defeating death in the way the Death Eaters mean it, Harry," said Hermione, her voice gentle. "It means... you know... living beyond death. Living after death."' 

In Harry and Hermione's reaction to the quote on his parent's tombstone we find that there are multiple ways for death to be an enemy. 

The Deathly Hallows sounds eerily like a current technological advancement: the rising trend of griefbots.

Book seven, in fact, presents three ways to defeat death, and they are highly illuminating. 

Firstly, there are Horcruxes. This is Voldemort's project for immortality: the division of his soul via murder and the darkest magic, and the implantation of those parts of the soul into objects which guarantee that, even should he die, he will live on.  

This is, I think it's fair to say, not a vision of the death's vanquishing which the books present as appealing - Voldemort is the darkest wizard of living memory, and the creation of his Horcruxes takes him deeper into evil than anyone has ever gone. Yet it has strange parallels to various current attempts at death defiance. Dividing your soul up and placing it in objects sounds pretty similar to me to uploading your consciousness into a computer. 

Now I'm not saying that all transhumanists are evil wizards whose projects rely on murder, but I do wonder if the same impulse lies behind Horcruxes and downloaded consciousness. 

There is, in both, the same fear of death, the same refusal to accept that my life might end. And there is the same default assumption that the body doesn't really matter - that the centre of my being is somewhere else, and that I can separate it from this inconvenient vessel which is so subject to injury and decay. The inevitability of bodily death is acknowledged, but life can go on even if my body fails, because I can place myself into objects. What matters is my consciousness, and that can be made eternal. 

The second option is a little more complex: the Deathly Hallows. These are three strange, mysterious objects, possession of which promises to make the bearer "master of death." The wand that gives murderous power. The stone that brings back the dead. The cloak that conceals. 

The Hallows dress up their promise in esoteric garb - they offer a quest for the initiated that requires a certain embrace of mystery, and they certainly seem friendlier than Horcruxes, since no one has to die to make them.  

But in the end, as Dumbledore admits, they are not really that different from the Horcruxes, for those who seek them also respond to the temptation to defy death, just like Voldemort. And if Horcruxes are about preserving the soul in the face of the inevitability of bodily death, the Hallows tease the possibility of avoiding death altogether, through the exercise of power. 

The wand gives the power of invincibility and conquest: the avoidance of death through the murder of all who might threaten to kill. 

The cloak gives the power to hide, to keep out of trouble, to evade death by escape. 

And the stone? The stone overcomes the loss of death by bringing its victims back, by refusing to accept that those we love might leave us.  

Again, the Deathly Hallows sounds eerily like a current technological advancement: the rising trend of griefbots. There is the same attempt to respond to grief by clinging to simulations of those whom we mourn, and the same despair at the end of the line. For the dead do not belong with the living, we are told, and legend has it the first owner of the stone was driven to suicide. 

The Hallows attempt to deny death through power, and this is why Dumbledore found them so alluring, and so destructive: they promised to wind back his own loss while giving him the victory he thought would give his life meaning. 

And yet, in reality, even when Harry unites them all, they don't give what they promise. Indeed, they only work to their full power when they are used for humbler ambitions: to hide friends from danger, to perform wondrous magic without boasting in the glory of the wand, or to face death with the comforting presence of those who have gone before. 

For the stone only becomes available to Harry when he finally embraces the third way to defeat the death. The way his parents believed in.  

Death, in the Potter books, is defeated by dying. Or perhaps more specifically, by dying for love - love of children, love of friends, love of a world gone tragically wrong.  

Harry's mother protected her son from dying multiple times, through the power of her sacrificially loving surrender. Dumbledore, in a complex way, protects Malfoy and saves the Elder Wand from Voldemort, thereby protecting the whole wizarding world, through his voluntary death. Even Snape, in the bitterest and most twisted story of them all, ends up giving Harry what he needs to win and finding a measure of redemption, in and through his own murder. 

And, in the climax of this long, convoluted story, Harry avoids death by going willingly to die. Because he loves his friends. Because he hates others dying for him. Because he recognises the terrible duty he faces, the terrible path Dumbledore has laid out for him, and he loves too much to run. 

Voldemort is wrong. Love does conquer death. 

The parallels to the Christian vision of death are stark. The quote on the tombstone which sparks these reflections for Harry (and for me) is in fact from the Bible. "The last enemy that shall be defeated is death" is a profoundly Christian idea. 

Yet my friends were right to react negatively to what they thought I meant by death being an enemy. 

For, just like the good guys in Harry Potter, Christians have traditionally been suspicious of attempts at immortality on our own terms. The Bible, I would suggest, knows nothing of a technological defeat of death, whether through downloading our consciences, or radical life extension, or technologies of power. Death cannot be staved off by any of our own work. 

But this does not mean that death is a good thing, simply a part of human existence which we would do well to welcome and learn to get along with (though I do think we would do better to think about death more, and be more honest about its existence).  

Death is an enemy. It is the final enemy. We are right to rage against it. To grieve those whom we lose. To feel its existential weight. 

Yet, perhaps paradoxically, we should not fear it. For death is an enemy that has been vanquished, but vanquished through Jesus' death.  

Immortality is not, for Christians, something we achieve, but something that is given to us. We believe in the Saviour who dies, and who rises again, and in whose resurrection, as strange as it may sound, we also will be raised. Death is defeated by love, but it is not our love, it is God's love for us. 

This gift, according to the early Christian writers, can only be received by going through death, not by avoiding death. Indeed, Paul's letters, which make up most of the New Testament, are full of the insistence that the pattern of Christian life is always death first, then life. Death in baptism, to new life in Christ. Death to sin, to life in freedom. Bodily death, to bodily resurrection. 

And so, what I should have said to my friend, is that Hermione is right. Death is the final enemy to be defeated, but this does not mean the ways of the Death Eaters. It does not mean projects of immortality, whether rooted in science, or a mystery cult, or power over others. 

Rather it means it life after death - a life that is given to us, by our saviour who has been through death and defeated it. 

Death is the enemy but it is not our enemy to defeat. That victory was won for us, on Easter Sunday 2000 years ago, in a cemetery near Jerusalem, when Jesus rose again. 

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