The 'gorilla in the room' Or benefit versus risk: how do we count the costs of face transplants?

In September 2019 Carmen Tarleton, best known as a face transplant recipient, was at the centre of new headlines, as it was reported her transplant was failing. ‘Woman Badly Burned by Abusive Husband' Needs Second Face Transplant’, said the Metro. ‘Her Face Transplant is Failing after Six Years. Now this Patient Awaits an Uncertain Future’, announced the Boston Globe.

Tarleton previously made the headlines back in 2013, when news of her transplant circulated around the world’s media. Since that time there has been a heightened awareness of the incidence of domestic abuse on a global scale, and of the horrifying figures of women killed by intimate partners. Though there needs to be more consideration of the differences between the gendered forms of trauma that often result in face transplants, we know that domestic violence victims often suffer damage to the face, neck and head. The weapons used, however, differ.

In 2007, Tarleton was separated from her husband when he broke into the home she shared with her two daughters, and attacked her with a baseball bat and a bottle of industrial strength lye. He caused burns to 85 per cent of her body and devastating facial damage. In fact, Tarleton’s injuries were so terrible that she was put into a medically-induced coma for three months. Tarleton herself went on to become a nationally recognised advocate for women who had suffered violence at the hands of their partners. Tarleton’s ex-husband died in jail.

Tarleton was already suffering from extreme physical and emotional trauma, then, when she was taken to hospital. There her surgical team undertook multiple skin grafts on her body; some taken from cadavers, and some from her own thighs. Tarleton’s life was saved, but under new terms. She was unable to blink because she had no eyelids. She was unable to smile or breathe through her nose.

Tarleton spent years living in pain and discomfort, adjusting to a new appearance, before Dr. Bohdan Pomahac, who had already had success in the field, got in touch to offer her a face transplant. This was still a largely experimental procedure, for which various protocols were in place to determine whether Tarleton was a good candidate. Her physical and mental health were assessed over a lengthy period, from the strength of her immune system to her social relationships, the question of risk - and this was a risky procedure - was continually balanced against the potential benefits of the procedure. A procedure with unknown long-term or psychological outcomes.

Once approved for a face transplant, Tarleton waited more than a year for an eligible donor. There was and is a shortage of donors in the US, and an even greater shortage of faces. To be eligible, a donor needs to be brain dead and a match for blood group, skin tone, texture, age and sex. The permission of the donor family also needs to be secured.

There are risks here, too, in opening up the field of face transplantation to public scrutiny: how to create a field without raising expectations and criticisms? How to be open about what is involved while generating more donors?

Each step of the preparation and face transplant process is necessarily lengthy and complex. Each step is also a negotiation of risk. Aside from the demands of the surgery, there are risks around the immune-suppressant regime and the possibility of chronic rejection - in which case the transplant would need to be removed immediately. There are also physical and psychological risks that need to be managed by the entire surgical team as well as the patient, the patient and donor family.

Tarleton had undergone 55 separate surgery before her face transplant, and may of her facial functions could not be restored. The strain placed on an individual’s mental and physical wellbeing as a result of such intense and relentless operations must be profound.

Additional risks were created for Tarleton, moreover, by the nature of those surgeries, that included skin grafts and blood transfusions that compromised her immune system. Pomahac believed that there was a 20 per cent chance that a new face would be rejected entirely. In the case of such an event - which Tarleton is now confronting - her face would have to be reconstructed again from tissue taken from her own body, or from the bodies of cadavers. Heavy doses of immunosuppressants are needed to prevent rejection. And those drugs themselves carry medical risks: of multiple illnesses, infections, cancers and kidney failure.

"That’s the gorilla in the room’, Dr Kodi Azari, chief of reconstructive transplantation at UCLA has said: That’s what keeps me up at night. You’re basically taking an otherwise healthy person, and you’re giving them drugs to impair that health."

The question of risk, then, comes up again and again for face transplant candidates. It is not simply a question of balancing the evidence of reconstruction against transplantation in pursuit of quality of life. There are unknown hazards of surgery that is widely recognised as life-enhancing rather than life-saving. Though to some extent that distinction balances on what is considered ‘life’: eating and drinking, kissing and talking, breathing without support - these are all functions that help make humans physically embodied and socially communicative. What are the psychological risks of their absence?

The life expectancy of a face transplant is uncertain. Most estimates say 15 years, but that is based on the lifespan of a kidney. And episodes of rejection are common. Tarleton had several incidences of rejection, when her drug cocktail was tweaked successfully. In August 2019, however, the face transplant started to fail. She reported terrible pain as her skin blistered and swelled. Parts of her face began to die - one nostril, some of her transplanted hair, her eyebrows.

The choice is now a stark one: Tarleton must wait for a replacement face and hope that her existing face survives that long. The alternative will be another reconstruction. And in the meantime, she lives and breathes and laughs and worries and spends time with her friends and family and supports other face transplant recipients and candidates. And the entire surgical team waits along with her. Waiting for a face, of course, means waiting for someone to die. Which is an unsettling, tempered kind of hope.

Traditional risk-benefit ratios play anticipated benefits off against expected risks. But so much of innovative medicine is uncertain. Those risks are heightened by a lack of evidence. And the humanity of those risks needs to be considered.

These are important considerations because face transplants need to be viewed in that wider social and psychological context. Ethical and psychological justifications often play catch-up to medical and surgical innovation, and face transplants are a case in point. In clinical terms, risk in medicine tends to be viewed through a narrow lens: does X produce better medical outcomes than Y? And in this, surgical teams make split second and long-term decisions based on a range of clinical factors. Yet the sociology of risk is complex, especially in relation to medicine and health. The surgical teams I have spoken to understand this clearly; while subjective perceptions are seldom articulated in clinical terms, and there is enormous variability between the characteristics of different teams, individual professionals take decisions that are often intuitive, and based on an emotional understanding of an individual patient.

In the case of face transplants, then, the gorilla in the room is not only predicting health outcomes, but also what considering what risk means personally to surgeons, nurses, physiotherapists, anaesthesiologists and all those involved in face transplant surgery. Understanding the perception of risk on surgical teams, and listening to the range of disparate voices that might exist within that team, is a necessary counterbalance to the perception of ‘risk’ as a clinical monolith.

It is also important to consider what risk means to the psychologists and psychiatrists and ethicists who predict and support and help define ‘recovery’, for healing is not a single state, or even a clearly defined process; it has fits and starts, curves and bends and may lead to sudden decline as swiftly and unexpectedly as it does to recovery.

And what of the family and friends of the recipient and the donor, whose emotional engagement with the process will be complex and long-lasting? Who might worry about identity replacement, or whether there is suffering, or how to engage with the changing, or disappearing face of a loved one? Or the people living with disfigurement who might be considering their eligibility in the future?

On a more pragmatic level - which is relevant for Tarleton’s case, since the newspapers applauded her ‘optimism’ (in ways that are both gendered and layered with the expected behaviours of a face transplant patient), how and when should we frame face transplants as a legitimate and viable solution for severe facial disfigurement? At what point do surgeons, hospitals, nations decide: we are ready? And how do we constitute “success” in psychological, emotional, physical and social terms?

A separate but critical accounting of risk, of course, applies to the institutions and Trusts that are considering face transplants and their reputation amid inevitable economic, national and international impact. Weaving these threads of risk together, and considering what risk might mean for different people, in a range of circumstances, as well as how the concept of ‘risk’ is defined on an emotional and intellectual level, is critical if we wish to have a more systematic, rigorous understanding of face transplants as an innovative form of surgical intervention.

This are the kinds of questions I am exploring in my UKRI Future Leaders Fellowship at the University of York. This interdisciplinary project brings together arts, humanities, social science and science research. My team and I are working with leading surgical teams, ethicists, journalists, historians, writers, artists, psychologists and others to ensure a better understanding of the issues at stake. Please get in touch if you would like to know more.

***

NB I have chosen not to illustrate this story with a photograph of Tarleton. The judicious and reflective use of medical photography is something that I have been considering in some detail. There are times when the use of a patient’s image is necessary or rhetorically effective (and these are not always the same thing). So here I am using, instead, a section of a painting by Lucy Burscough, one of my collaborators. Even when vision is lost, as is often the case in face transplant recipients, the eyes remain one of our most commonly used signifiers of humanity and emotion.

https://www.lucysart.co.uk

https://www.lucysart.co.uk

It's emotional: face transplants and embodied research practices

I had an intensely emotional experience in a hospital recently. Not as a patient or relative, but as a researcher. I am mindful of the impact of hospital spaces in my life - in many people’s lives - as places that can be profoundly affective, for good or ill. The smells, the sounds, the colours, the lighting: all these sensory factors weigh in on the body, after all.

On the train home my head was filled with the images I had seen, the painful, heart stopping stories I had encountered, I reflected on the strategies I would need to employ to separate myself off from the emotional dimensions of the research. Yet this created a dichotomy that didn’t seem helpful; after all, it is my emotional engagement in the research that opens up new directions and facilitates new ways of seeing.

Indeed, there have been some fabulous discussions on Twitter recently about the use and abuse of researchers’ emotions. The historians Beatriz Pichel and Chris Millard have made original and important interventions into the role of the historian’s body in empathising and engaging with the subjects of research, as well as the ethical challenges involved. These challenges are moral and practical for institutions as well as the individuals involved, especially in relation to mental wellbeing and secondary trauma.

This seems to me to be an overdue and critical development of the field of emotion history. There has been a long-standing presumption of eradicating ‘bias’ (as an intellectual position, as though reason can be disassociated from the emotions), but this is something else: a profound recognition of the socially, sensorially and physically embodied nature of research.

What we feel about our research subjects might differ according to our intellectual stance, political views and personal experiences, but it is disingenuous to suggest that researchers don’t feel.

As part of this wider reflection on the emotionality of research, I’d like to share some thoughts on how these development connect to my own research into facial disfigurement and transplantation, which includes the relevance of the temporal dimension, and researchers’ lived experiences.

My project, AboutFace: the affective and cultural history of face transplants, was in development for almost five years. That, in itself - and even the term ‘my project’ - is a measure of how emotionally invested historians can become in their sources, methodologies and priorities.

Leaving aside what momentous emotions are generated by the search for funding ( including hope, anticipation, depression, dejection, fear, worry and occasional elation), these emotions connect to the relationships forged with sources, colleagues, collaborators, research strands, networks, and one’s own academic identity.

Based at the University of York and funded by a UKRI Future Leaders Fellowship, AboutFace explores the emotional and cultural history of face transplants. With an eye to the playing out of gender, ethnicity and difference, its interconnecting strands explore such themes as:

  • Photographic sources and the ways we use (or don’t use) problematic images

  • Literary descriptions and the role of emotional narratives

  • Appearance matters in the age of the selfie

  • Historically-situated attitudes towards disfigurement and emotional wellbeing

  • The affective relationships between surgical teams and patients

  • The emotional meanings of innovation at a societal and political level

These areas connect to my research over the past 20 years in emotion history, body history, cosmetic surgery and the relationship between expression and feeling. I have written about subjects as diverse as love letters, vulvas, hearts and loneliness, always with a view to the role of emotion, gender and the construction of meaning. And I have deployed a wide range of interdisciplinary analytical approaches, from anthropology, sociology and gender studies to literary theory and philosophy.

But nothing has moved me quite so much as the human face. I have been able, mostly, to exercise detachment in my analyses by focusing principally on narratives and literary construction. This intellectual distancing is characteristic of many theoretical approaches. Though it also reminds me of the charge of sterility levelled against the intellectual turn: where do you go when all meaning is up for grabs? Where is the political and the polemical?

It is fair to say that an emphasis on embodiment means the political and the polemical are making their way back into historical approaches. It will be interesting to see how claiming a space for emotions as critical response will work with and around the historicity of which it is part. And without falling back onto the essentialism of the 1970s. Indeed, essentialism is at the heart of debates about gender identity in the early 21st century, a debate which has created unhelpful polarisations.

To be ‘distanced’ has historically invoked a masculinist lens of logic. New directions in emotion history reminds us that there are many forms of embodied knowledge - sensory, haptic, intuitive - that are traditionally feminine and dismissed as such. Yet these are found in co-curation, in the medical humanities, in the health humanities. They have been implicit in the emergence of social history since the 1970s and emotion history since the 1990s. And they are finding their way back into a range of disciplines concerned with thinking through the body.

The question for me is: how do they intersect with historical distance? How do we judge their value? And how do we separate the lived experience of the historian from the subject being explored? After all, we encounter tragedy and pain in our own lives as well as the lives of our historical subjects. Can empathy inform our critical approach?

By focusing on the face, the traditional site of emotional expression, identity and individualism, I have found this question to be intensified. In content, because the encounter with a damaged and transplanted face invokes a set of affective responses that depend on one’s own emotional and intellectual frameworks. And because the face is not only an index for individual character and identity, but also the space where humanity is most commonly manifested, as Sharrona Pearl has argued with intelligence and empathy.

Visual images make all the difference - as does the type of image being viewed. They bridge the gap between what is seen and imagined. It is not so simple as saying images create empathy of course, as the rise of violent pornography shows. But there is an affective difference in a viewer’s reaction that might be engendered by a woodcut and a photograph, both depicting smallpox. Of course this difference is itself a product of the age in which artefacts are produced, including the transformative power given to objects and the conception of the self that engages with the world.

Yet this chronological distance and the priority of the text was one reason why it was easier for me to remain disconnected from my subjects when I worked on 17th and 18th century sources,.That does not mean that in interpreting domestic violence cases from the church courts in the 1700s I did not feel enraged at abusive men or sympathy for the women bringing cases against them. I did not have personal experience of an abusive husband, but I did have a keen awareness of how emotional language could be used to construct and shape reality - as well as its constraints.

Yet it is the visual culture of the 19th-21st centuries that has refocused my attention on emotional bodies. The photography discussed by Beatriz Pichel and others which necessarily invokes a different set of responses because it taps into historical frameworks of meaning by which the self, subjectivity and emotions are articulated.

Material culture makes a difference too of course, and there are plenty of early modernists who are affectively engaged with their subjects as a result of objects. Using prosthetic masks is another example of the way emotional embodiment can connect to the sensory experience. The image I have chosen to illustrate this blog is a full-face prosthetic of an elderly woman. It invokes a wide range of emotional responses, which is why I have chosen to show only part of the object here. I will address the affectivity of prosthetics in another blog.

In addition to visual and material culture, it is the sensory environments where I work that has raised the subject of embodied research: hospitals, care homes, support groups - spaces where the everyday, lived experience of disfigurement and transplantation brings us up close to the physical realities of the diagnosis, the surgery, the prognosis. The waiting times and infections, fears of rejection (tissue and social), the shock, horror and fear that is invoked often simultaneously with stoicism, hope and endurance.

I have found that my research practices have become more mindful as a result. I am mindful that my own emotional response to a subject must take a backseat to what is happening in the moment, in the encounter between patient and physician, subject and other, self and mirror. But that my own emotional response is also a means by which I can see things differently, notice the flicker of doubt in an eye, the tremble of a lower lip, ask questions that might not be obvious.

I am conscious of the role of secondary trauma for the researcher (and the need for research time to be managed accordingly), as well as the significance of the temporal dimension. The questions asked by the researcher necessarily change in relation to their own life experience, intellectual positioning, emotional capacity. There are some subjects I can no longer tend to (child sexual abuse, rape, violence). And others which are increasingly interesting because they are entangled up in my own experience: ageing, isolation, loss.

So the questions raised by a focus on the researchers’ emotions are vast. They include the sensory, the environmental, the temporal, the perceptual, and the historical climate in which the researcher is active.

It seems to me that this focus on reflexivity, in ‘owning’ one’s affective responses, in being mindful of their impact on others, connects to bigger questions about truth, authorship and integrity in the 21st century, where emotions have been used as evidence in election campaigns and populism is on the rise. For the neuroscientist Manos Tsakiris, we are in an age of ‘visceral politics’, where the relationship between the physiological and the social has profound political significance.

Writing researchers’ bodies into qualitative health research is not new. Nor is an awareness of embodied learning across the lifespan, which we can extrapolate into the field of historical studies. Qualitative researchers are aware of the importance of their contribution to the interviewing process, to what affective experiences might be shaped and created by their own perspective.

What will be challenging, and interesting, for emotion historians, is the ways in which embodied research draws attention to the role of subjectivity in the historian’s craft. How might we, as embodied researchers, develop priorities, parameters and values by which affective subjectivity and conventional academic ‘rigour’ go hand in hand?

Portion of a full face silicone prosthetic.

Portion of a full face silicone prosthetic.

Engaging research: the foundation for science and technology

One of the most important but challenging aspects of research is making sure that it has impact. To ensure my research makes a difference, I work with a wide range of collaborators, from policy makers and surgeons to patient groups, artists and writers. This interdisciplinary dimension is critical to understand the emotional and ethical meanings of face transplants and their historical evolution. So the space and opportunity to meet with a wide range of people with shared interests is important.

Which is why I am delighted to have been selected to the Foundation Future Leaders programme, organised by the Foundation for Science and Technology. The Foundation exists to provide an impartial platform for debate on issues with a scientific, medical or technological component. The Foundation Future Leaders is a cohort of 30 people - government civil servants, parliamentary civil servants, researchers and people from industry - working together to explore key challenges in how science, engineering and technology are considered and used by Parliament.

Watch this space for updates!


logo.png

A Biography of Loneliness and the course of a (research) life

Finally, my new book A Biography of Loneliness: The History of an Emotion has landed.

I used to roll my eyes at the idea of birthing a book, perhaps because metaphors are so emotionally charged and my own pregnancies, births (and miscarriages) were traumatic. But there was something about this book’s process that has been about transition, birth and death and everything in between: the ‘pinch points’ of experience that mark us in such different ways.

Loneliness has a biography in its own right - and it intersects with our own biographies, hence the book’s title. I started writing this book as a cultural historian intrigued by the panic about loneliness: had it really become worse? I discovered that loneliness came about at a distinct historical moment. That it could be linked to social and economic changes, as well as theological ones. That it was shaped by individual circumstance and experience but also by political ideology.

Many people seem to be lonely: the married and the single, the young and the old, the bereaved and the homeless, the mentally ill and the outwardly happy. Sometimes loneliness is transitory and other times it is chronic. Sometimes it causes illness, other times it is a blessing. And we cannot understand what loneliness means without appreciating its historical and personal evolution.

During the research for the book I questioned whether I was lonely too, and I thought about its causes. Between submission of the manuscript and the publication, I moved house, changed jobs and divorced. I found happiness in a new city, a new job and a major new research project.

Significant life changes or pinch points are transformative by their nature: they force us to consider what we need from ourselves and others, what we will and won’t tolerate, the people we want to be connected to and the communities that matter to us.

This is important because though loneliness has no opposite, it is remedied by community: physical, symbolic, practical and emotional. It is not the number of connections that matter, it is the nature of those connections. It is whether there is empathy, compassion, understanding and a sense of ‘community’, a word itself that means many different things, as my book shows.

A Biography of Loneliness traces the emergence of loneliness as a ‘new’ emotional state under neoliberalism, as well as the incidence of loneliness in the lives of historical others: Queen Victoria, Sylvia Plath, Virginia Woolf as well as some lesser-known names. It shows that loneliness is a social as well as a psychological emotion; that it can be ‘a disease of the blood’ as Plath put it, but how it can also be a source of liberation and creativity.

I talked to Canada’s CTV recently about why a loneliness pill isn’t the way to solve a so-called loneliness epidemic. Our solutions need to be social and collective as well as individual. And that means taking responsibility and accountability for others - in the online and offline worlds.

It is the nature of the individualistic West not to be accountable for others, to see this lack of accountability as ‘natural’ somehow. So we pretend not to see the suffering or others, or to know that someone is unhappy. We tell ourselves stories about why people are homeless or alone or depressed. We choose not to look beyond the charming man facade, to see the abuse that it might hide.

We turn a blind-eye to the troubles of others because neoliberalist society tells us that’s OK. Or at least a vocal enough section of that society that passes as the norm. Libraries closing? So? We don’t use them. Social and housing benefits slashed? Scroungers should find jobs. Elderly people having nobody to change their bandages? Their families should do it. No work? Must be the immigrants. Teenagers struggling? Blame social media. Kids in cages? Not our kids.

I wonder how loneliness would be reframed in an age of compassion, if we acted as though we were each conjoined, somehow, in a bigger project of human kind. And is that so preposterous an idea? ‘No man is an island’, no woman either., as the poet John Donne put it in 1624: ‘We are each ‘a piece of the continent, a part of the main’. (MEDITATION XVII Devotions upon Emergent Occasions.)

What would happen to loneliness if we embraced collective responsibility to one other with the commitment and bravery of a 16-year-old girl crossing the Atlantic on a yacht?

To find out more, check out A Biography of Loneliness. You can pre-order from the Oxford University Press website directly with a 30 per cent discount using this code: AAFLYG6

IMG_1409.jpeg

About face: An update

I am delighted to announce that Dr Victoria Hoyle will be joining Dr Stef Eastoe as a PDRA on my UKRI FLF project “About Face: the affective and cultural history of Face transplants.”

Stay tuned for some exciting developments taking place in the next month, including new clinical partners, the first Advisory Board meeting in September and a project launch event in October.

About Face will explore the psychological and cultural meanings of face transplants as well as the broader histories and ethics of disfigurement and surgery - and the meanings of the face in 21st-century culture. We will be asking a LOT of questions, like:

What does disfigurement mean mean to you?

Is your identity in your face?

Would you give away the face of a loved one?

What are the ethical limitations of innovative surgery?

How do concepts of gender, ethnicity, beauty and culture Influence the “value” of a face?

What makes a face, a face?

Our social media and website will be up and running in the next month and I can’t wait to share what’s happening and ways you might like to get involved.

Face perception at the University of Iowa (2011)

Face perception at the University of Iowa (2011)

Why a Loneliness pill is not the answer: my INTERVIEW wIth ctv newS

The problem with a loneliness pill, which has been promised by some researchers (with the best intentions) is that it medicalises and pathologises loneliness. It suggests that loneliness is a single state rather than a complex and historically-situated social one.

We need to understand loneliness in relation to the complex theme of belonging rather than presume it is inevitably connected to depression or anxiety. Sometimes loneliness is positive. Sometimes it is temporary. Always it is linked to our engagement and sense of belonging in the social world. Alleviating the negative symptoms of loneliness with a pill just takes us further away from understanding its complexities. And branding a perceived increase in loneliness as “an epidemic” is damaging because it presumes we have no control. Loneliness “happens to us” in this model, rather than being a product of modern life and individualism.

I explore these themes in some detail in my book A Biography of Loneliness which will be out on 12 September. In the meantime, Please link the below link to see my brief interview with CTV News Canada on the limitations of a “loneliness pill”.

https://www.ctvnews.ca/video?clipId=1753011

public.jpeg

A pill for loneliness? Interview for the National Post

I was interviewed recently by Sharon Kirkey on the subject on loneliness. I’ve had some amazing conversations with Sharon before about face transplants so it was a lovely coincidence to discover she was writing a piece about loneliness in Canada.

Like many places in the Western world, Canada is experiencing high levels of loneliness, especially in women in their 30s. One of the problems in assessing loneliness, however, is that there is little analysis of the ways we collect data and the categories used. How many women in their 30s complaining of loneliness are new mums for instance, for whom loneliness is an inevitable part of life sometimes - especially those “pinch points” where we transition from one way of being to another.

Other pinch points include adolescence, university life, marriage, parenthood, divorce, redundancy, retirement, widowhood - any of the moments that require us to reevaluate who we are and our place in the world.

We need a more nuanced approach to the “loneliness epidemic”. That includes who loneliness affects as well as the different emotions involved and the role played by time, gender, class, health and ability.

Sometimes loneliness is chronic and damaging, other times it is transitory and manageable (even pleasurable) and that is why we need a far more sophisticated approach to loneliness than we have at present. And we also need to consider the political function of loneliness: not only how political choices (like withdrawing benefits and closing libraries) can increase loneliness, but also how loneliness can serve an important political function. It can even give rise to populism and totalitarian governments.

Check out the article, which includes other key researchers in modern loneliness, including Susan Matt and Luke Fernandez. And consider: is the loneliness pill really a solution? I will discuss this more fully in my next post, which includes a live interview I gave for Canadian news organisation CTV.

https://nationalpost.com/health/all-the-lonely-people

Loneliness in Canada: a national epidemic?

Loneliness in Canada: a national epidemic?

Ideas worth Spreading at TEDSUMMIT 2019

I just returned from an exciting and fascinating experience of the TED Summit. I will be blogging my thoughts about that event over the next few weeks, and uploading my talk when it’s available online. For now, here’s a summary of my session - and what a privilege to share a stage with the First Minister of Scotland Nicola Sturgeon and the comedian Omid Djalili.

For a preview of what I spoke about - and what others in the session had to say - follow this link.

Me and the sign2.jpg

An emotional history of face transplants

I am delighted to share the news that I have been awarded a Future Leaders Fellowship by UK Research and Innovation. This was announced on 7 May by the Science and Innovation Minister Chris Skidmore. You can read about the remit of the awards here and what they promise to bring to the future of UK research and innovation.

My project will create a new cultural framework by which we can understand the emotional and ethical impact of face transplants internationally - and in the UK. There have been close to 50 around the world, but none so far in the UK, despite the fact that the UK has long been a leader in facial reconstruction work, and in preparing the ground for face transplants.

More details on my project are available here

One of the most emotionally challenging aspects of the project is the trauma that people receiving face transplants have undergone, and the transformative potential of this extraordinary surgery. The youngest person to receive a face transplant to date is Katie Stubblefield, who was treated at the Cleveland Clinic. Her story was written and documented by the writer Joanna Connors and the photographer Maggie Steber for the National Geographic.

You can learn more about Katie and her journey in the video below.

Please be aware that this video contains images and experiences that you may find upsetting.

interoception and the emotional body. or, how do we know what’s going on inside?

On March 1 2019, I convened a workshop on the visceral bodywith Professor of Psychology, Manos Tsakiris. Exploring the cultures of interiority and interoception (the subjective awareness of what is happening inside the body), papers drew on a wide range of historical, social, psychological, neuroscientific and artistic considerations. They explored the visual history of interiority – from medieval anatomy to 20th-century brain scans – and considered the relationship between subjectivity and objectivity, the meanings of ‘self’ and society, and how the two connect.  

 What struck me, as stories weaved from Jack Hartnell’s account of the 13th-century Abbey of Maubisson to Katerina Fotopolou’s research at the 21st-century London Neuropsychoanalysis Centre, was the different ways bodily subjectivity has been accessed and interpreted objectively. Most notably from the 19th century, with the emergence of scientific medicine, but also through the distancing lens of the other, as I discussed in my own contribution on the heart of Harriet Martineau (see also my book, This Mortal Coil.) Perceptions of emotions are no different. Modern neuroscientific accounts of emotion tend to focus on the brain rather than the heart – replacing the cardiocentric model of emotions that dominated Western medicine for two centuries. But the viscera are back: heart-brain and gut-brain interaction are becoming reintegrated into new interoceptive models.

Interdisciplinary events like these allow us to explore key areas like interception in new and exciting ways. And to consider the ways that historical ideas about medicine and health tend to find their way back into modern analyses. You can download the podcast of the day’s talks here: https://backdoorbroadcasting.net/2019/03/dissecting-the-visceral-body-across-time-and-disciplines/

I talk more about the emotional body in my forthcoming book with Oxford University Press on the history of Loneliness:, entitled A Biography of Loneliness: The History of An Emotion. Having submitted the monograph last July, the wait has seemed interminable. But copies will be available for pre-order soon, and I’m delighted to be able to share the cover with you at last.

FINAL COVER.jpeg

Writing women: World War 2 and the Railways

I haven’t posted for a while. I have been busy with writing and thinking and funding bids. Time has lost its regularity and its meaning as I play the waiting game. So I did what I do when I struggle for inspiration - talk to other writing women about what inspires them. This blog will feature on the History Girls website, for which I write on the 15th of each month.

For today’s blog I spoke to Susan Major, who has written a fabulous book about women working on the railways during World War 2. This book is important because although we know that women took on many traditional men’s roles during the war, very little has been published on women in the railways. Railways were a reserved occupation, so in theory men continued to work on the railways while their counterparts in other industries were sent off to war. In reality, the men working on the railways were often old and disabled. The issues confronted by women workers were those that existed in other activities:  economic, sexual, social and temporal, their lives being changed by the new habits and relationships brought by the war, as well as its ending. Susan’s book is a welcome addition to our understanding of the lives of working women in the Second World War, as well as its gender politics. 

Susan Major completed a PhD with the Institute of Railway Studies & Transport History at the University of York in 2012. Drawing upon material from the National Railway Museum and the British Library, she focused on early railway excursions. Her book based on this research, Early Victorian Railway Excursions, was shortlisted for the Railways and Canal Historical Society Book of the Year Awards 2017. Her latest book, Female Railway Workers in World War II, was published by Pen & Sword in 2018. Susan was a programme consultant for the BBC series Railways: the Making of a Nation, taking part in the episode on leisure. She is retired and lives in York.

Fay: “So Susan, what drew you to the subject of women on the railways?” 

Susan: “Well I completed my doctorate, which later became a book, on Victorian railway excursions. Later, when doing some research about railway voices I discovered the National Archive of Railway Oral History at the Railway Museum, which contains many different  interviews with  people working on and associated with the railways. Quite a lot of this material has been digitised and indexed and transcribed. Among all the men recorded, there were some women and I realised that their voices had not really been listened to. And there were enough women talking about the wartime period, and about working in what were commonly perceived as ‘men’s jobs’, to form the basis of a book. And remember that even so-called ‘women’s’ jobs in those days, like working as a clerk, had been men’s jobs when in the railway context. And I wanted to know not only what everyday life was life for those women, but also how they were looked at by other people, by the companies who were employing the women as well as commentators in newspapers of the time.” 

Fay: “ Are there any particular women that stand out for you?Any stories that were especially memorable?” 

Susan: “There was a female porter at York station, when it was bombed in 1942. A train was also bombed on its way into the station, and these were terrible conditions to work in. The social conditions could be difficult too; she tells a story of a parcel foreman that the female workers had problems with and they sorted him out by giving him some chocolate, which happened to be laxative chocolate.”

Fay: “What can you tell us about the kind of women in these roles, their age or class for instance?”

Susan: “Well it’s a very select sample, dependent on who was chosen to interview. And these women would all have been young at the time, because the older women would have died by the time the stories were recorded. And they described liking the companionship of other women, the responsibility, and, unlike factory, work the variable and different activities involved.”

Fay: “Were the women all unmarried? I’m thinking about other roles of the time, which had very strict union rules”.  

Susan: “Yes. If you got married you had to leave. Most of these women were aged between 16 and 22 and often they met a railway man and got married and that was the last we hear of them. By contrast the newspaper reports were keen to tell readers about those women who might have 12 children and still carried out a role. And there was a sense that a woman wasn’t quite acceptable in publicity unless she had some link to a railway man. Women were not treated as individuals in their own right.” 

Fay: “Were most of these women working class women?”

Susan: “Not necessarily. Many were working class though there were also reports of quite posh women working on the railways. The ones that were interviewed were mainly ordinary women, who had a clear sense of their roles and their relationships with other women and you get a real sense of the culture of the workplace through the stories that they tell. Compared to other work, like factory work, the duties could be varied and interesting”.

Fay: “What do these interviews say about how it was to be a woman in a traditionally male environment?”

Susan: “There is some discussion about workplace harassment, much of which was taken for granted. For instance one of the accounts describes the experience of a typistThey had to go down and check their work with one of the men in the office. She said “And there were never enough chairs. So we used to share a chair with a man. And I think the feminists these days would be horrified. They'd probably be having all the men done for harassment. But we used to call it fun”

[Pause for reflection and a little teeth-gnashing]

Fay: “So these women would have to sit on their boss's lap.” 

Susan: “Yes, or share the chair. And there are a lot of examples of that. And women would talk about how they worked all day while their male supervisors stood around talking about sport. And at the end of the working day the women would get ready to go home and the men would say “overtime now”. And the men got paid more for the overtime, while the women had often families to get home to.There was also this concept of the “railway family”, which other historians have written about. Employees were encouraged to think of the railway as a family, and there were magazines prompting this image. And there was a sense that you could only get a job in the railways if your father put you forward, for instance, and while that wasn’t necessarily so in practice, it was how people thought about the railways as paternalistic employers”. 

Fay: “After the war did these women get sent away from the jobs, as they did in other industries?” 

Susan: “They were dispensed with, yes. Although I’ve focused on women working, the last chapter of my book is called: “and then the men came back”, which draws attention to the way women workers were dismissed. One woman, a guard, was sent a letter thanking her for her service. Only it wasn’t sent to her but to her boss. She had to travel a long way on the train to get to his office after a long shift, where she was shown this piece of paper, which he then kept, before trekking all the way home again”. 

Fay: “Thank you for a fascinating introduction to the book”

If you want to win a copy of Susan’s book, then check out the History Girls website on 15 February, when I will be running a competition for readers.

Railway women. To find out more  click here

Railway women. To find out more click here

The art and science of the heart

I recorded an interview for Radio 4 this week for their upcoming programme on the Art of Living, which looks at the work of artist Sofie Layton and bioengineer Giovanni Biglino at Great Ormond Street Hospital. Sofie and Giovanni worked with patients on visual images and stories about the heart, as an object of science and a metaphor for emotions. As an interdisciplinary art project, The Heart of the Matter is an important intervention into the different ways we look at, and think about the heart as both a pump and something so much more.

In Matters of the Heart: History, Medicine, Emotion published by Oxford University Press in 2010, I explored the reasons why we focus so much on the heart in popular culture - why the heart stands for authenticity, truth, meaning and emotion (especially love) - when it is widely regarded as a pump. The answer lies in the 2,000 years of medical history, when the heart was not only the warming centre of the body under humoral medicine, but also held a significant role in mediating the demands of the soul that worked in and through the physical body.

For the Ancient Greeks, as well as for the Ancient Egyptians and Mesopotamians, a Cardiocentric or heart-centred model of the body predominated. The heart swelled to attract all that was good and contracted to repel all that was evil; an early attempt to account for the sheer physicality of emotions as lived experiences. Not until the 19th century, when the brain was erected as the organ of the self par excellence, did the heart begin to diminish as an explanation of feeling and emotion, though the metaphors have continued, as I discussed in an interview in The Atlantic.

The rise of Cardiology, the parallel rise of Psychiatry and Psychology - as I explored in This Mortal Coil: The Human Body in History and Culture - these were the processes by which the heart’s scientific status was limited to a passive rather than an active organ. The heart responded to the brain’s desires, but it did not have a life-force of its own; it as motivated by reflex rather than the soul.

The origin of these changes can be traced back to the seventeenth century, and the popularisation of the circulation of the blood by the physician William Harvey. I say popularisation because, contrary to popular wisdom, it was an Arab physician, Ibn Al Nafis, who discovered pulmonary circulation in the thirteenth century. This historical oversight reinforces the great man of Western medicine model at the same time as it diminishes the significant impact of Islamic medicine and culture on the West for thousands of years. Yet it took the Renaissance and the flowing of visual arts and books on human anatomy, most notably by the Flemish anatomist Andreas Vesalius, for the idea of circulation to take off in the West.

One could argue that it was not until artists made visible new ways of thinking about and imagining the physical body that physicians were able to see and create alternative narratives of the body and the heart. This is a reminder that science does not simply reflect the body “as it is” but partakes of the wider cultural context in which it takes place. Science works in conjunction with popular narratives and beliefs - such as the well-entrenched idea of the heart as the centre of emotion, feeling and the self - even as it rebuts them. I spoke to one eminent heart surgeon who was unable to contribute to a discussion about the metaphorical heart for a simple reason: it would be impossible to remove the heart from a human chest if it was the site of the self, or love, or emotions. And yet medical students often report anxieties about dissecting the heart - just as they do the brain. Both are weighty organs, after all.

Art and science are always linked, which is what this exhibition makes clear. Part of the reason is the shared languages, metaphors and visual images that provide hooks for our understanding; that help to make the interior visible, and coherent. Hearts are objects of the self and emotions as well as pumps. And after all, though we schematise hearts as pumps versus hearts as metaphorical symbols, physicians are aware of the two-way process between the hearts and the emotions. We do not have to go as far as cellular memory theorists, and the belief that the heart has more neurons than the brain (and is therefore capable of physical memory) to understand the significant ways the heart impacts on feeling. The brain-heart connection is a deep, enduring part of the chemistry of the human body.

That connection is also based in language and metaphor. Hearts were furnaces, now they are pumps. But they are also receptacles of feeling and compassion, and linked to our fears and anxieties around transplantation, and where the limits of the human might be. In other cultures, too, besides the West, hearts matter. The heart (or Anahata) is the fourth Chakra of the body in Hindu, Yogic, Shakta and Buddhist Tantric traditions. The heart Chakra is associated with balance and calmness, as well as truth. In Chinese medicine the heart is a yin organ, that governs joy among other emotions. As in the West, ‘heart’ means more than a mere organ.

Talking about the meanings of the heart is important. It reminds us not only that the body carries symbolism and meaning that is more than the sum of its parts, but also that the stories we tell are also carried along with us. As patients, parents, lovers and friends, as much as artists, philosophers, medics and scientists, we are all curators of an ongoing discussion of what the heart means in the 21st century.

 

Tending to the lonely body - or when 'social prescribing' might make a difference

As the government turns, piecemeal, to ‘social prescribing’ as a way of countering loneliness, I wrote this piece for the Guardian that emphasises the importance of the body as well as the mind. Tending to the body, I argue, is every bit as important as focusing on talking; after all, it is relatively recently that mind and body were conceived as separate states.

https://www.theguardian.com/profile/fay-bound-alberti

1633.jpg

An Interview with Amanda Vanstone at ABC National Radio

I talked recently to Amanda Vanstone, the Australian former politician and ambassador to Italy, now presenter of “Counterpoint” for the Australian Broadcasting Corporation (ABC). Our subject was the neglected history of loneliness. You can listen to and download the programme here.

Why not get in touch to let me know what you think?

ABC-Radio-National.svg.png

Sylvia Plath's Letters, Volume 2

I have just finished reading the second volume of Sylvia Plath's Letters, published by Faber and Faber. They make for sober reading. The first volume, published in 2017, covered the period 1940-1956. In those, a smiling, bikini-clad Plath beams out from the front cover, while the pages are filled with the optimism and hope of youth. There are pockets of doubt and difficulty, the hint of rape and a suicide attempt, but also Plath's growing certainty of herself as a writer, a woman and an equal to the towering figure of Ted Hughes, with whom she is forever linked.

It is evident from the book jacket that the second volume will be a more serious affair. Gone is the summer sun and the happy expression. Viewed from the side and in monochrome, Plath's expression is serious, her hair tied up in a no-nonsense style. In nearly 600 letters, we follow Plath's marriage to Hughes, their movement around the globe and the UK, her library successes and his more immediate recognition, childbirth and child loss, a breaking-down marriage and her suicide at the age of 30.

To Plath, Hughes was a giant, a genius, a literary God. He must be fed steak for breakfast and waited on, his needs tended to. Yet she also resented her domesticity, her entrapment to the demands of her husband - first moving to Devon because he wanted space, searching for childcare in order to write,  and juggling the demands of that writing along babies, cooking, cleaning and tending to Hughes. The marriage was intense. It was also violent. She wrote to her psychiatrist that Hughes beat her when she was pregnant, causing her to miscarry their second child. 

In the foreword to the book, their daughter Frieda meets these claims head on. She writes in defence of her father, justifying his apparent violence towards Sylvia - which is also recorded in Plath's journals - on the problematic grounds that what was meant by 'a beating' is unclear (a hit, a swipe, a push?) and that her mother had been difficult, needy, disruptive. It is difficult to read this perspective, and to compare it with the plaintiveness of Plath's own journals, the constant fretting about existence that hovers at their margins, her need to do right, live right, be right. 

Yet it is clear in Frieda's foreword how difficult it must be to have parents so utterly in the public eye and simultaneously capable of creating division. Plath was better known after her death than in life, with her books The Bell Jar (a semi-autobiographical novel about a nervous breakdown) and her poetry. Her writing is said to have contributed to the development of the confessional style in literature. And yet it is Hughes who is remembered in Westminster Abbey, not Plath.

Plath's final letters were written just a few days before she died by suicide in her London flat. She had successfully moved back to the city after being left by Hughes (he was unfaithful with their tenant Assia Wevill, who, in a terrible mirroring would kill herself and her daughter in the same way that Plath died). Plath seemed to be getting better; she had been knocked by Hughes' infidelity and the subsequent rejection of some friends, and she struggled with Frieda missing her father. She was convinced that her daughter had 'latent schizophrenia', and she fretted constantly about her wellbeing.

It took such effort on the part of Plath to reestablish herself, to find childcare, to push herself back into the London scene, that the exhaustion is apparent on the page. Her letters to people become repetitive as she tells one after another about Hughes' adultery and abandonment, the money he is to pay, his family's turning on her, her living in Yeats' house and how that was fate, and finally, the endless illness, colds and flu of her children. 

In the main, Plath's letters have an enforced jollity even when she is struggling. From time to time she was angry and critical with her mother, but she also felt responsible for her, writing to her sponsor, the American author Olive Higgins Prouty, not to pass on information that might cause Aurelia worry. Prouty had suffered with mental health problems too, so Plath felt she was an ally. Plath was convinced that Hughes wanted her to kill herself, something she refused to contemplate. 

But by the beginning of 1963, despite all her contrived hope and determination, Plath was sleep deprived, unwell, lonely and depressed. On 11 February, having previously convinced herself, and her psychiatrist that she was no longer a suicidal 'type', she left out a snack for the sleeping children, took precautions to seal the kitchen and gassed herself in the oven. 

Two years after her death, Plath's collection of poems Ariel was published by Ted Hughes. These poems, including the eponymous poem written on her 30th birthday, drew on the pain of abandonment and loss that had followed her marriage breakdown. This is the writing for which she is best remembered. 


ARIEL

And now I

Foam to wheat, a glitter of seas.

The child's cry 

Melts in the wall. 

And I

Am the arrow, 

The dew that flies 

Suicidal, at one with the drive 

Into the red

Eye, the cauldron of morning. 




Available from  Faber and Faber

Available from Faber and Faber

Libraries as a lifeline for the lonely

I have been thinking a lot about libraries and their links with loneliness. It seems that often we defend libraries on the basis of their links to literacy and equal opportunity, and I couldn’t agree more.

However libraries are more than spaces filled with books etc. I posted here for the History Girls collective on why libraries are also a lifeline for the lonely.

What do libraries mean to you? What was the first library you visited? Do you still visit the library, and if not, why? I would love to hear from you. 

https://the-history-girls.blogspot.com/2018/08/the-lifeline-of-libraries-in-age-of.html?m=1

IMG_8791.JPG

Oswestry library: my childhood saviour 

Suicide and loneliness

For the past couple of years I have been blogging regularly for the History Girls, a collective of bestselling fiction and non-fiction writers who cover every imaginable period of history. This week I blogged about the suicide of Anthony Bourdain, and the ways we talk about suicide in the twenty-first century. You can read that blog post here

One of the reasons I was thinking about Bourdain, aside from the terrible sadness of his death and the challenges we have as a society in framing suicide, was how alone he must have been in his final moments. I have just submitted my history of loneliness for Oxford University Press, in which I explore the meanings of loneliness across cultures and time periods. Being alone - not necessarily physically, but emotionally - recurs time and time again in discussions of suicide.

The language of suicide can be blaming - a person 'commits' suicide because it was a criminal offence until 1961, just like murder or rape. This terminology is outdated and unhelpful and it creates the sense that the suffering person is somehow selfish or wilful, rather than a person whose pain outstrips their coping mechanisms. 

Suicide, like loneliness, is difficult to talk about. Both states carry the whiff of shame because of the way they are talked about in the 21st century. Terms like 'Billy no-mates' or 'loner' create a gulf between the self and others. And like loneliness, suicide is linked with intense depression and a feeling of being shut off from the world; of seeing the world through glass. A population-wide study found close associations between feelings of loneliness and suicidal ideation, or an unusual preoccupation with thoughts on suicide.

Emotional separation, alienation, an unwanted sense of being alone, these are human experiences, but they need not be universal. The 'Time to Change' campaign has highlighted the importance of other people in reaching out to someone who is lonely or depressed. For people who are socially isolated, that is a challenging bind; the separateness from others creates an additional invisible barrier between the self and the rest of the world. 

The campaign to reduce the stigma associated with mental health has been credited with some success. Attitudes towards the mentally ill are harsher in climates of economic instability, however, when the most vulnerable members of society - like refugees - are the most common victims of scapegoating. And there is a limit to the effectiveness of encouraging people to talk while mental health budgets are being slashed. What must be more isolating than being ready to talk, yet finding nobody to hear? 

What Bourdain's death from suicide tells us, like that of the designer Kate Spade just days before, is that external manifestations of success or happiness are no real indicator of emotional contentment. I do not know whether Bourdain or Spade were lonely, though people can be loneliest of all when surrounded by other people. Dying alone, from whatever cause, is a lonely way to go. 

The ways we talk about suicide and loneliness matter. It can isolate people further, or create a welcoming space in which blame has no place. This is especially important when people are disconnected from others, when it seems impossible to talk because there's a gulf of experience, and language. It's not always good to talk; sometimes it's good to listen. 

A Biography of Loneliness will be published by Oxford University Press. 

Samaritans mental health hotline is open 24 hours a day, seven days a week. It can be contacted at any time from any phone for FREE on 116 123. 

photo-1501297875943-27f3803b4956.jpeg