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The elegies that fail the forgotten places

Storytelling’s not about giving people a voice, it's about listening to what they’re singing.

Elizabeth Wainwright is a writer, coach and walking guide. She's a former district councillor and has a background in international development.

A book's front cover beside a portrait of the author, JD Vance
J.D. Vance book promotion, 2017.

Does it matter who tells the story of a place? It’s a question I’ve sat with as a writer, a community worker, and as someone who returned to my native West Country after a long time away. My departure and return to this place brought with it a sharper awareness of the labels this rural region could invite; of the way its people could be portrayed; of how easily they can be reduced to a one-dimensional stereotype that fosters little understanding.  

And I am both reducer and reduced. I am a proud Devonian, rooted in soil thick with my ancestors, whilst also craving the culture and variety of elsewhere. My story of life in this place is complex. It’s a story that’s mine to tell, and not representative of anyone else from here – just as the people I’ve worked with in communities here and across sub-Saharan Africa taught me too: this person is not this place. This story is not this people.  

Stories matter – stories told; stories hidden. They shape our identity, our opinions, our possibilities. John Steinbeck wrote that:  

“A man who tells secrets or stories must think of who is hearing or reading, for a story has as many versions as it has readers. Everyone takes what he wants or can from it and thus changes it to his measure. Some pick out parts and reject the rest, some strain the story through their mesh of prejudice…”  

Stories told reflect stories carried, like light refracted through a prism. A story’s colours tell us something about who tells the story and how they see the world. Which is one reason perhaps that JD Vance’s memoir Hillbilly Elegy: A Memoir of a Family and Culture in Crisis came under scrutiny, especially since he was named Donald Trump’s vice-presidential running mate in the forthcoming US election.  

Hillbilly Elegy tells the story of Vance’s white working-class family, from his grandparents in the Appalachia region of Kentucky to his own coming of age in Middletown, Ohio. Vance raises questions about how local people, including his own family, are responsible for their own misfortunes, including poverty and addiction. His book came out in 2016, at just the right time to give many Americans an insight into why so many people like Vance’s relatives and past neighbours had voted for Donald Trump. It was painted as the voice of a forgotten community, and it became a bestseller, admired by some for its portrayal of Appalachian culture by someone from the inside. But reading people who know the places he talks of, it becomes clear that the book is “rife with stereotypes and classic Republican talking points peddled under the guise of lived experience,” as one commentator said.  

Sarah Smarsh, author of books including Bone on Bone: Essays in America by a Daughter of the Working Class, said in a Guardian piece published in 2016,  

“that the media industry ignored my home for so long and left a vacuum of understanding in which the first glimpse of an economically downtrodden white is presumed to represent the whole.”  

A Bitter Southerner article responding to Hillbilly Elegy said that generalisation means that “…complexity gets simplified, the edges get rounded out[…]Appalachia has been written about and photographed in such a compelling (if fabricated) way that the descriptions of passersby took on more weight than the lived experiences of the people being described. What remains is a concept of a place that is both wildly romantic in its natural beauty and backward enough to justify the destruction of that very nature.”  

We live in divided times, but often I find it hard to discern real division versus the media-created story of division. Theirs is a story that gets things wrong. Smarsh reflects how “countless images of working-class progressives…are rendered invisible by a ratings-fixated media that covers elections as horse races and seeks sensational b-roll. This media paradigm created the tale of a divided America…” This is why it matters that we hear stories that do not fit that paradigm. A many-voiced 2019 publication Appalachian Reckoning: A Region Responds to Hillbilly Elegy offered some of those stories in response to Vance’s painting of Appalachia.  

Vance thought he could write the story of a 13-state region, but many Appalachians were unhappy about him becoming their spokesperson, especially when he seemed to blame the poor for their poverty. Appalachian Reckoning is a graceful counter to this: not silencing Vance’s own story but offering many more views and stories from Appalachia. Its co-editor Meredith McCarroll said she wanted to “complicate any singular view simply by including multiple ones. I wanted to create a chorus of voices, “each singing what belongs to him or her and to no one else,” to borrow from Walt Whitman’s view of place.” The publication offers cultural nuance, emotional connection, and a “context for some of the claims Vance makes in his book when it moves beyond memoir, and to pass the mic to a wider range of writers, poets, photographers, activists, and artists who make Appalachia a place far too complex to capture and far too dynamic to die.” 

This approach feels important now, in the world as is it, with a media that often overlooks nuance, and with a culture that has become so visual that the way things are styled and framed and presented to us online can often be quite different to the reality. It is important to know the difference, and stories can help us discern that.  

This symphony of existence can, if we give each voice its space, subvert paradigms of division and fear. 

There are stories that are easy to peddle and easy to buy into. In charity work, I saw how the story of the benevolent professional outsider could shape things, leaving little room for local stories and experience. In politics I saw how the story of opposition got in the way of all the people getting on with the everyday work of restoring and caring for their communities across lines of difference. We can, unknowingly, make a place and a people shrink or even disappear with the stories we carry or amplify, or ignore.  

Stories wielded unwisely can shrink faith as well as people and places. The Jesus who I did not grow up with but came to know slowly as an adult is a Jesus of nuance, compassion, and deep listening. He would not, I think, recognise the brand of Christianity that can be used to justify particular politics. That religion and politics have in places become so intertwined is perhaps a reflection of the reduction of the vastness of the Bible and the many diverse voices it contains into one story that serves a particular group of people. Jesus again and again subverted what empire and hierarchy and tradition expected of him. He invited people into his story over and over, curious about their own story but never using it as a reason to include or exclude.  

When I think about who tells the story of a place – or of a people, a time, a faith – I see that really, there is never one story anyway. There is a chorus of voices, each a little different, each part of a vast harmony that – if we have the ears and heart to hear it – sings a song of challenge and joy, of despair and illumination. Former US president Woodrow Wilson said, “the ear of the leader must ring with the voices of the people”. Storytelling is not about giving people a voice – something I heard a lot in charity work. It is about listening to what they’re already singing. This symphony of existence can, if we give each voice its space, subvert paradigms of division and fear, of biased framing and selective storytelling. It can sing us back to ourselves, helping us see each other. And isn’t that what softens hearts, isn’t that why we tell stories? Author Kazuo said in his Nobel acceptance speech that “stories are about one person saying to another: This is the way it feels to me. Can you understand what I'm saying? Does it also feel this way to you?” Stories are not tools of manipulation or power, but pathways to encounter, to relationship, to understanding. They are, perhaps, the only way through divided times. 

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Assisted dying's language points to all our futures

Translating ‘lethal injection’ from Dutch releases the strange power of words.
A vial and syringe lie on a blue backdrop.
Markus Spiske on Unsplash.

In the coming weeks and months, MPs at Westminster will debate a draft bill which proposes a change in the law with regards to assisted dying in the UK. They will scrutinise every word of that bill. Language matters. 

Reading the coverage, with a particular interest in how such changes to the law have been operationalised in other countries, I was struck to discover that the term in Dutch for dying by means of a fatal injection of drugs is “de verlossende injectie.” This, when put through the rather clunky hands of Google translate, comes out literally as either “the redeeming injection” or “the releasing injection.” Of course, in English the term in more common parlance is “lethal injection”, which at first glance seems to carry neither of the possible Dutch meanings. But read on, and you will find out (as I did) that sometimes our words mean much more than we realise.   

Writing for Seen & Unseen readers, I explained a quirk of the brain that tricked them into thinking that the word car meant bicycle. Such is the mysterious world of neuroplasticity, but such also is the mysterious world of spoken language, where certain combinations of orally produced ‘sounds’ are designated to be ‘words’ which are assumed to be indicators of ‘meaning’. Such meanings are slippery things.  

This slipperiness has long been a preoccupation for philosophers of language. How do words come to indicate or delineate particular things? How come words can change their meanings? How is it that, if a friend tells you that they got hammered on Friday night, you instinctively know it had nothing to do with street violence or DIY? Why is it that in the eighteenth century it was a compliment to be called ‘silly’, but now it is an insult?  

Some words are so pregnant with possible meaning, they almost cease to have a meaning. What does “God” mean when you hear someone shout “Oh my God!”? Probably nothing at all, or very little. It is just a sound, surely? And yet no other sound has ever succeeded in fully replacing it. We are using the term “God”, as theologian Rowan Williams points out in his book The Edge of Words, as a “one-word folk poem” to refer to whatever we feel is out of our control.     

Both of these first two interpretations look at death, in some sense, ‘from the other side’ – evaluating the end of someone’s life in terms of speculation over what will happen next. 

This idea of an injection being verlossende seems to me to be the opposite. I find myself hearing it in four different (and not mutually exclusive) ways, each to do with taking control of this very uncertain question of dying. The first, releasing, sounds to me like an echo of the neo-platonic ideas that still infuse public consciousness about what it means to be dead. As we slimily carve our pumpkins for Halloween and the children clamour to cut eyeholes into perfectly good bedsheets, we see a demonstration of society’s latent belief that humans are made up of body and soul, and that at death the soul somehow leaves the body and floats into some unknown realm (or else remains, disembodied yet haunting). If we translate verlossende as releasing then we capture that idea – that of the soul, which longs to be at peace, trapped inside suffering, mortal flesh. 

Google’s second suggestion for verlossende was redeeming. This could be heard theologically. Christians believe in eternal life, that the death of this earthly body is only the start of something new – a life where there will be no crying or pain, and people will live forever in the glorious presence of God. In the bible, the apostle Paul encourages those who follow Christ to trust that they have been marked with a ‘seal’, meaning that they are like goods which have been purchased for a price, and that God will ‘redeem’ this purchase at the appointed time. Death, therefore, is not a fearful entering into the unknown, but a faithful entering into God’s promises.  

Both of these first two interpretations look at death, in some sense, ‘from the other side’ – evaluating the end of someone’s life in terms of speculation over what will happen next. But there is the view from this ‘side’ also. We do not need to speculate about what death means for some of those who experience acute suffering due to terminal illness, and who wish to hasten the end of their lives because of it. They too might want to speak of a releasing injection or a redeeming injection – given that both terms hint at the metaphor of life as a prison sentence. To be in prison is to have one’s rights and freedoms severely limited or entirely taken away. It is not uncommon to hear a sufferer refer to incapacitating illness as being ‘like a prison sentence’, and one can empathise with the desire to have the release date set, back within the sufferer’s control.  

This is the strange power and pregnancy of words – verlossende is able to carry all these meanings or none of them. Until I began researching this article, I had always assumed that the English term, lethal injection, simply meant an injection of some substance that is deadly. This is how the term is commonly understood, therefore, in a sense, this is its meaning. Yet, when I came to consider the possible origins of the word, I realised its likely etymology is from the Greek word lēthē, meaning ‘to forget’. In the Middle Ages, if something was lethal it caused not just death, but spiritual death, placing one beyond the prospect of everlasting life. By contrast, something could be fatal, meaning only that it brought one to one’s destiny or fate.  

With this in mind, as we try to speak clearly in the assisted dying debate, the term fatal injection might be a more precise way to describe this pathway to death that is in want of a name. After all, whether you believe in an afterlife or not, dying is everybody’s fate, and I can see that choosing to take control of one’s fate is, for anyone, an act of faith with regards to what comes next.  

  

This article was part-inspired by Theo Boer’s original article Euthanasia of young psychiatric patients cannot be carried out carefully enough, in Dutch newspaper Nederlands Dagblad.  Theo is a professor of health ethics at the Protestant Theology University, Utrecht. 

Read the original article in Dutch or an English translation below. Reproduced by permission.

 

 

Euthanasia of young psychiatric patients cannot be carried out carefully enough 

Theo Boer 

How is it possible to determine that patients who have suffered from psychiatric disorders for five or ten years and who are between the ages of 17 and 30 have ‘completed their treatment options’, wonders Theo Boer. It also conflicts with perhaps the most important task of psychiatrists: ‘offering hope.’  

The patients we are talking about now are not physically ill and therefore do not have the ‘comfort’ of an impending natural death. 

A letter was recently leaked in which leading psychiatrists ask the Public Prosecution Service to investigate the course of events surrounding euthanasia of young psychiatric patients.  

One death mentioned by name concerns seventeen-year-old Milou Verhoof, who received the redeeming injection from psychiatrist Menno Oosterhoff at the end of 2023. It will not have escaped many people's attention how much publicity the topic has received in the past year or so. Together with a colleague and a patient (who later also received euthanasia), Oosterhoff wrote the book Let me go.  

The tenor was: it is good that euthanasia is possible for this group of patients, the taboo must be removed, their suffering is often terrible, they have already had to undergo countless 'therapies' without effect - can one time be enough?  

Or would we rather have these patients end their lives in a gruesome way? And who really thinks that psychiatrists make hasty decisions when they decide to comply with a euthanasia request?  

To be clear: we are talking about something completely different than what has been called 'traditional euthanasia' for years: euthanasia for physically ill patients with a life expectancy of weeks or months. Given the excellent palliative care that has become available, such euthanasia will actually be less and less necessary in 2024.  

Panic  

No, the patients we are talking about now are panicky, anxious, confused, depressed, lonely, often unemployed, poorly housed, without prospects. But they are not physically ill and therefore do not have the 'comfort' of an impending natural death.  

I have heard several of them say: if only I were terminal, then euthanasia would not be necessary. The fact that there is now attention for this group of patients, with whom we in our hurried and solution-oriented society know so little how to deal, is a gain. At the same time, I am happy with the leaked letter. You can criticize Oosterhoff's procedural approach ('why not an ethical discussion instead of a legal one?'), the lack of collegiality, this perhaps underhanded action ('why did you go straight to the Public Prosecution Service?'). But in my opinion, the letter writers are definitely hitting the mark with this crooked stick. Firstly: how is it possible to determine that patients who have suffered from psychiatric disorders for five or ten years and who are between the ages of 17 and 30 have ‘completed their treatment options’ (a criterion from the Euthanasia Act)?  

Review Committee  

Nobody disputes that their suffering is unbearable. At the same time, I know from my time on a Regional Euthanasia Review Committee that an illness becomes unbearable when all hope is gone.  

A psychiatrist who gives euthanasia to a young adult is also undeniably sending the signal that, like his patient, he has given up all hope of improvement. That is actually risky, because even patients who have suffered for years sometimes recover and, moreover, our brains are not fully developed until we are 25. But it also conflicts with perhaps the most important task of psychiatrists: offering hope. In their training, the risk of transference-counter-transference is consistently pointed out: a patient takes his therapist with him into despair, the psychiatrist transfers those feelings to this and other patients: ‘this kind of suffering is untreatable and cannot be lived with’.  

In the recent NPO television documentary A Good Death we see an embrace between a psychiatrist and her emotional patient. In doing so, this psychiatrist offers a unique form of involvement. But does she provide sufficient resistance to the cynicism, despair and negative vision of the future that is also widespread outside psychiatry?  

Sensible decisions?  

That brings me to a second objection: is it sufficiently recognised how much a psychiatric illness can affect someone’s ability to make sensible decisions? The hallmark of many psychiatric illnesses is a deep desire to die and an inability to think about it in a relative way. As a result, many are unable to think in terms of a ‘possibly successful therapy’.  

Boudewijn Chabot 

The main character in the book Zelf heeft by Boudewijn Chabot, Netty Boomsma, responds to Chabot's suggestion that there might be a life after depression: 'Yes, but then I won't be it anymore.' She wants to go down with her depression. I know differences. The people with a death wish who remark about a possible therapy: ‘I hope it is not effective, because then I will have to go through it again.’ 

 Another hurdle 

If a second psychiatrist is consulted and, for example, suggests trying one or two more therapies, many patients see this as yet another hurdle on the road to euthanasia. They do not see it as a serious opportunity to be able to cope with life again. There are no easy answers here. Nor are pillories appropriate. But let euthanasia remain complicated here, and let us continue to look for hope. 

 

Reproduced by kind permission