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6 min read

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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7 min read

We don’t have an over-diagnosis problem, we have a society problem

Suzanne O’Sullivan's question is timely
A visualised glass head shows a swirl of pink across the face.
Maxim Berg on Unsplash.

Rates of diagnoses for autism and ADHD are at an all-time high, whilst NHS funding remains in a perpetual state of squeeze. In this context, consultant neurologist Suzanne O’Sullivan, in her recent book The Age of Diagnosis, asks a timely question: can getting a diagnosis sometimes do more harm than good? Her concern is that many of these apparent “diagnoses” are not so much wrong as superfluous; in her view, they risk harming a person’s sense of wellbeing by encouraging self-imposed limitations or prompting them to pursue treatments that may not be justified. 

There are elements of O-Sullivan’s argument that I am not qualified to assess. For example, I cannot look at the research into preventative treatments for localised and non-metastatic cancers and tell you what proportion of those treatments is unnecessary. However, even from my lay-person’s perspective, it does seem that if the removal of a tumour brings peace of mind to a patient, however benign that tumour might be, then O’Sullivan may be oversimplifying the situation when she proposes that such surgery is an unnecessary medical intervention.  

But O’Sullivan devotes a large proportion of the book to the topics of autism and ADHD – and on this I am less of a lay person. She is one of many people who are proposing that these are being over diagnosed due to parental pressure and social contagion. Her particular concern is that a diagnosis might become a self-fulfilling prophecy, limiting one’s opportunities in life: “Some will take the diagnosis to mean that they can’t do certain things, so they won’t even try.” Notably, O’Sullivan persists with this argument even though the one autistic person whom she interviewed for the book actually told her the opposite: getting a diagnosis had helped her interviewee, Poppy, to re-frame a number of the difficulties that she was facing in life and realise they were not her fault.  

Poppy’s narrative is one with which we are very familiar at the Centre for Autism and Theology, where our team of neurodiverse researchers have conducted many, many interviews with people of all neurotypes across multiple research projects. Time and time again we hear the same thing: getting a diagnosis is what helps many neurodivergent people make sense of their lives and to ask for the help that they need. As theologian Grant Macaskill said in a recent podcast:  

“A label, potentially, is something that can help you to thrive rather than simply label the fact that you're not thriving in some way.” 

Perhaps it is helpful to remember how these diagnoses come about, because neurodivergence cannot be identified by any objective means such as by a blood test or CT scan. At present the only way to get a diagnosis is to have one’s lifestyle, behaviours and preferences analysed by clinicians during an intrusive and often patronising process of self-disclosure. 

Despite the invidious nature of this diagnostic process, more and more people are willing to subject themselves to it. Philosopher Robert Chapman looks to late-stage capitalism for the explanation. Having a diagnosis means that one can take on what is known as the “sick role” in our societal structures. When one is in the “sick role” in any kind of culture, society, or organisation, one is given social permission to take less personal responsibility for one’s own well-being. For example, if I have the flu at home, then caring family members might bring me hot drinks, chicken soup or whatever else I might need, so that I don’t have to get out of bed. This makes sense when I am sick, but if I expected my family to do things like that for me all the time, then I would be called lazy and demanding! When a person is in the “sick role” to whatever degree (it doesn’t always entail being consigned to one’s bed) then the expectations on that person change accordingly.  

Chapman points out that the dynamics of late-stage capitalism have pushed more and more people into the “sick role” because our lifestyles are bad for our health in ways that are mostly out of our own control. In his 2023 book, Empire of Normality, he observes,  

“In the scientific literature more generally, for instance, modern artificial lighting has been associated with depression and other health conditions; excessive exposure to screen time has been associated with chronic overstimulation, mental health conditions, and cognitive disablement; and noise annoyance has been associated with a twofold increase in depression and anxiety, especially relating to noise pollution from aircraft, traffic, and industrial work.” 

Most of this we cannot escape, and on top of it all we live life at a frenetic pace where workers are expected to function like machines, often subordinating the needs and demands of the body. Thus, more and more people begin to experience disablement, where they simply cannot keep working, and they start to reach for medical diagnoses to explain why they cannot keep pace in an environment that is constantly thwarting their efforts to stay fit and well. From this arises the phenomenon of “shadow diagnoses” – this is where “milder” versions of existing conditions, including autism and ADHD, start to be diagnosed more commonly, because more and more people are feeling that they are unsuited to the cognitive, sensory and emotional demands of daily working life.  

When I read in O’Sullivan’s book that a lot more people are asking for diagnoses, what I hear is that a lot more people are asking for help.

O’Sullivan rightly observes that some real problems arise from this phenomenon of “shadow diagnoses”. It does create a scenario, for example, where autistic people who experience significant disability (e.g., those who have no perception of danger and therefore require 24-hour supervision to keep them safe) are in the same “queue” for support as those from whom being autistic doesn’t preclude living independently. 

But this is not a diagnosis problem so much as a society problem – health and social care resources are never limitless, and a process of prioritisation must always take place. If I cut my hand on a piece of broken glass and need to go to A&E for stiches, I might find myself in the same “queue” as a 7-year-old child who has done exactly the same thing. Like anyone, I would expect the staff to treat the child first, knowing that the same injury is likely to be causing a younger person much more distress. Autistic individuals are just as capable of recognising that others within the autism community may have needs that should take priority over their own.   

What O’Sullivan overlooks is that there are some equally big positives to “shadow diagnoses” – especially as our society runs on such strongly capitalist lines. When a large proportion of the population starts to experience the same disablement, it becomes economically worthwhile for employers or other authorities to address the problem. To put it another way: If we get a rise in “shadow diagnoses” then we also get a rise in “shadow treatments” – accommodations made in the workplace/society that mean everybody can thrive. As Macaskill puts it:  

“Accommodations then are not about accommodating something intrinsically negative; they're about accommodating something intrinsically different so that it doesn't have to be negative.” 

This can be seen already in many primary schools: where once it was the exception (and highly stigmatised) for a child to wear noise cancelling headphones, they are now routinely made available to all students, regardless of neurotype. This means not only that stigma is reduced for the one or two students who may be highly dependent on headphones, but it also means that many more children can benefit from a break from the deleterious effects of constant noise. 

When I read in O’Sullivan’s book that a lot more people are asking for diagnoses, what I hear is that a lot more people are asking for help. I suspect the rise in people identifying as neurodivergent reflects a latent cry of “Stop the world, I want to get off!” This is not to say that those coming forward are not autistic or do not have ADHD (or other neurodivergence) but simply that if our societies were gentler and more cohesive, fewer people with these conditions would need to reach for the “sick role” in order to get by.  

Perhaps counter-intuitively, if we want the number of people asking for the “sick role” to decrease, we actually need to be diagnosing more people! In this way, we push our capitalist society towards adopting “shadow-treatments” – adopting certain accommodations in our schools and workplaces as part of the norm. When this happens, there are benefits not only for neurodivergent people, but for everybody.

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