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‘People say, just get surgery, and I’m like: Bruh, this is after surgery’

October 14, 2024 by Fay Bound Alberti

‘People say, just get surgery, and I’m like: Bruh, this is after surgery’

The Author

Fay Bound Alberti

‘People say, just get surgery, and I’m like: Bruh, this is after surgery’

Cosmetic surgery fuels the fallacy that looks bring happiness. But what is it like to live with a striking visible difference? The star of a new film about the subject shares his real-life experiences

Cosmetic surgery is back in the news. After six facelifts, a brow lift, neck lift and a lip lift, the reality star Katie Price has new “butterfly lips”, created with tape and filler that make the lips bigger and curled upwards. Price may have had more aesthetic surgery than most, but she’s not alone in going under the knife. Last year there were 35m such treatments around the world. Facial surgeries – eyelid lifts, rhinoplasties, lip fillers – rose by 20% in 2023. Whatever else is going on – pandemics, economic and political crises, wars, human rights abuses – we cling to the belief that if we fix our looks, we can improve our lives.

It’s an understandable – if solipsistic – belief, given the attention paid to beautiful people; they are the ones who seem to get the jobs, the relationships, the Oscars. We are far more likely to trust, forgive and believe people who are good-looking. And if we can have a piece of that, why would we not, despite knowing some treatments end in tragedy. Last week Alice Webb, a 33-year-old mother of five, died from complications following a non-surgical “Brazilian butt lift”.

Our quick-fix culture prioritises appearance over everything else, including mental health. Social media and artificial intelligence exacerbate this trend. One in three women look at Instagram influencers and feel they ought to get some work done after comparing their faces unfavourably with those created by AI. The more algorithms define “beauty”, the more they lead people to those unattainable versions. It’s a doom spiral.

Not all treatments are influenced by fashion or a fear of ageing. Some 100 million people in the world live with a facial scar, mark or disease that creates “visible difference”, the term used by advocacy groups. “Disfigurement” sounds more pejorative, but it is a surgical term and a protected characteristic under the Equality Act 2010.

Surprisingly, people with major facial injuries do not necessarily experience more psychological distress than those worried about having thin lips or acne scars. Low self-esteem linked to facial difference is entirely subjective, and mental illnesses such as body dysmorphia, are on the rise. Surgical solutions are often peddled as a short cut to cure. But there are no quick fixes, and no proof that cosmetic surgery makes us happier. On the contrary, the more treatments we have, the more we pursue; that “new you” is always just around the corner. For Price, it’s her buttocks:“‘I’ve lost weight. So… that’s the next thing to be filled. A nice, courageous [sic] plump, plum bum.”

The fallacy that being more handsome or beautiful will make us happier is at the heart of A Different Man, now on US release. Directed by Aaron Schimberg, the film stars Sebastian Stan, Renate Reinsve and Adam Pearson. Pearson has neurofibromatosis type 1, a genetic condition that has covered his face in benign tumours, and he is a powerful advocate for people with visible difference. He has previously contributed to my Interface project, which explores the emotional history of the human face, from cosmetic surgery to face transplants. We meet at the King’s College Gordon Museum of Pathology in London, where, surrounded by wax teaching models of facial injury, we talk about A Different Man, and what it might reveal about our makeover culture.

Stan plays Edward, a man with neurofibromatosis, the same condition as Pearson. Edward lives an unfulfilling existence – he is “plodding along”, Pearson says; “he is not unhappy but he’s also not happy”. He lives in a cramped New York apartment and appears awkward and shy, especially around his new neighbour Ingrid (Reinsve), a wannabe screenwriter who thinks she might write a play about Edward. But before that can happen, Edward “gets involved in a medical trial that ‘cures’ him”. Edward becomes a conventionally handsome man (played by Stan without his prosthetic mask). After casting off his old life, and killing off Edward, Guy rises from the ashes. He reinvents himself as a real estate agent, using his looks to sell the dream of a new life.

Inside, however, nothing has changed; Guy remains awkward and insecure. When he meets Ingrid and discovers she has written a play about Edward, he auditions, with the help of a prosthetic mask. He is right for the role because, he tells Ingrid, one of his best friends has a facial difference. But it’s a role he never knew how to play, as he realises when Oswald appears, played by Pearson. In the film, as in real life, Pearson is charming and gregarious, fun to be around. He fizzes with energy and confidence, unlike Guy, who even in his beautified state moves stiltedly, like he’s afraid to take up space. Oswald takes over the play, showing how things should be done, and Guy starts to unravel. As Pearson puts it: “He sees these echoes of the past, or the past he could have had, but he couldn’t bring himself to achieve. And there follows a real descent into madness for Edward.”

The crisis at the heart of the film is that Stan’s character isn’t comfortable in either of his social masks. He couldn’t thrive as Edward, either because he anticipated that others would reject him or because he had already rejected himself. Nor could he flourish as Guy, since the change was merely surface deep. In the end, the disability in The Different Man is how society treats Edward, and how he treats himself.

This fits what psychologists of appearance know about the challenges of facial difference. It is easy to internalise the abuse received by others, and people with visible difference are routinely bullied and harassed, mocked and abused. Just last week it was reported that Oliver Bromley, who also has neurofibromatosis Type 1, was asked to leave a restaurant in south London because he was “scaring customers”.

Those with visible difference are not helped by our historically entrenched regard for beauty, and use of facial difference as a shorthand for evil. Think GoldenEye, Skyfall, Casino Royale and Joker; or Darth Vader; Freddie Krueger and Voldemort. There have been films specifically about visible difference – Freaks (1932), The Elephant Man (1980), Open Your Eyes (1997) – but little from the perspective of the individual concerned, and virtually nothing in the past 20 years. Why these films are made, and who is involved, matters. “Is it because they have lived experience,” Pearson wonders, “or is there some kind of fascination about the whole thing; are they trying to make audiences more compassionate and empathetic, or are they going for shock value?”

Pearson is open about the abuse he has experienced. When we met at King’s Cross, he had already spent the morning dealing with social media trolls. Today, with so much emphasis on cosmetic enhancement, people expect Pearson to be able to physically transform, as Edward does. That would be impossible, even if he wanted to: “All these tumours are wrapped around blood vessels and nerves, and I don’t think people realise that. People say, ‘just get surgery’, and I’m like: ‘Bruh, this is after surgery.’”

There is more than one way of being socially marginalised. AI, which promises so much in terms of medical diagnosis and treatment, does not serve people with visible difference well. “Bane of my bloody life,” says Pearson. “Just reading my passport, you do it online and it says, ‘this is a bad photo’, and you say, no, this is a wonderful photo, but your software doesn’t appreciate it. I have problems with the automated booths at airports; I have to unlock my iPhone with a pin number as it won’t recognise my face.”

Oliver Bromley, who has neurofibromatosis Type 1, was told to leave a London restaurant as he was ‘scaring customers’.

Pearson shouldn’t have to be so resilient, but he is. Similarly, his character Oswald turns the presumptions of the viewer upside down by his seeming disregard for his condition. Oblivious to the fact that he might feel socially inadequate, Oswald goes into the world expecting to be accepted and liked. And that, psychologists of appearance say, is the only way to be – because if you are downcast or awkward, if you exhibit the timid gestures that Edward does, you invite awkwardness from others. It is true that confounding expectations makes people act differently; a lot of the time when people avoid the gaze of those who are visibly different, it is because they are uncertain how to act.

What’s uncomfortable about this approach is that it puts all the work on to the person with visible difference. It requires individuals like Oswald – and by extension Pearson – to be exemplars for the “facially different community”. It’s a role that Pearson has taken on graciously, though not always one he has chosen. “When you get the ‘role model’ label thrust on you, and it does get thrust on you, sometimes people think you’re speaking for everyone. And I can only speak for myself. I care about advocacy. Whereas other people might be, ‘that’s not my job to explain it to you’. But then whose is it? Who is better equipped to do it than me? So, if me talking about it ad nauseam, until I get bored, and that means someone like me gets an easier ride, and it makes the world a better place, then rock and roll. It’s not all about me,” Pearson laughs. “It should be, but it’s not.”

Critics have applauded the film’s refusal to give viewers any easy answer to the question of facial difference. I am interested in how far we can move past it, to see a person in their entirety. When Pearson is in a film that doesn’t mention visible difference, we will have evolved as a society. As I walk him to his taxi, Pearson is stared at repeatedly, and I am unsure whether it’s because of his fame, or the way he looks. He tells me that when he first met Stan, and Stan wanted to get into the role, he had said to him: “I could talk to you for ages, until the cows come home, about having a disfigurement and you’ll never, ever get it. Though, equally, what you do understand is what it’s like to be known and lose privacy that way. I’ve always said the two ways to lose your anonymity in society are either to have a disfigurement or become famous. So, I’ve kind of shafted myself on both counts. The public still thinks they own you, or that you owe them something.”

Dr Fay Bound Alberti is professor of modern history at King’s College London, where she is director of Interface and the Centre for Technology and the Body. Her new book Face Value: A Cultural History of Being Human will be published by Allen Lane in 2025

Further reading

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Filed Under: Popular Culture, project update, Visible Facial Difference

The reconstruction of a 75,000-year-old Neanderthal woman’s face makes her look quite friendly – there’s a problem with that

May 9, 2024 by Fay Bound Alberti

The reconstruction of a 75,000-year-old Neanderthal woman’s face makes her look quite friendly – there’s a problem with that

The Author

Fay Bound Alberti

The reconstruction of a 75,000-year-old Neanderthal woman’s face makes her look quite friendly – there’s a problem with that

From a flaky skull, found “as flat as a pizza” on a cave floor in northern Iraq, the face of a 75,000-year-old Neanderthal woman named “Shanidar Z” has been reconstructed. With her calm and considered expression, Shanidar Z looks like a thoughtful, approachable, even kindly middle-aged woman. She is a far cry from the snarling, animalistic stereotype of the Neanderthal first created in 1908 after the discovery of the “old man of La Chapelle”.

On the basis of the old man and the first relatively complete skeleton of its kind to be found, scientists made a series of presumptions about Neanderthal character. They believed Neanderthals to have a low, receding forehead, protruding midface and heavy brow representing a baseness and stupidity found among “lower races”. These presumptions were influenced by prevailing ideas about the scientific measurement of skulls and racial hierarchy – ideas now debunked as racist.

This reconstruction set the scene for understanding Neanderthals for decades, and indicated how far modern humans had come. By contrast, this newest facial reconstruction, based on research at the University of Cambridge, invites us to empathise and see the story of Neanderthals as part of a broader human history.

“I think she can help us connect with who they were”, said paleoarchaeologist Emma Pomeroy, a member of the Cambridge team behind the research, while speaking in a new Netflix documentary, Secrets of the Neanderthals. The documentary delves into the mysteries surrounding the Neanderthals and what their fossil record tells us about their lives and disappearance.

It was not paleoanthropologists, however, who created Shanidar Z but well-known paleoartists Kennis and Kennis, who sculpted a modern human face with a recognisable sensibility and expressions. This drive towards historical facial reconstruction, which invokes emotional connection is increasingly commonplace through 3D technologies and will become more so with generative AI.

As a historian of emotion and the human face, I can tell you there is more art than science at work here. Indeed, it is good art, but questionable history.

Technologies like DNA testing, 3D scans and CT imaging help artists to generate faces like Shanidar Z’s, creating a naturalistic and accessible way of viewing people from the past. But we should not underestimate the importance of subjective and creative interpretation, and how it draws on contemporary presumptions, as well as informing them.

Faces are a product of culture and environment as much as skeletal structure and Shanidar Z’s face is largely based on guesswork. It is true that we can assert from the shape of the bones and a heavy brow, for instance, that an individual had a pronounced forehead or other baseline facial structures. But there’s no “scientific” evidence about how that person’s facial muscles, nerves and fibres overlaid skeletal remains.

Kennis and Kennis have attested to this themselves in an interview with the Guardian in 2018 about their practice. “There are some things the skull can’t tell you,” admits Adrie Kennis. “You never know how much fat someone had around their eyes, or the thickness of the lips, or the exact position and shape of the nostrils.”

It’s an enormous imaginative and creative work to invent the skin colour, forehead lines or half-smile. All these features suggest friendliness, accessibility, approachability – qualities defining modern emotional communication. “If we have to make a reconstruction,” Adrie Kennis explained, “we always want it to be a fascinating one, not some dull white dummy that’s just come out of the shower.”

Overlaying skeletal remains with modern affect reasserts the recent re-envisioning of Neanderthals as “just like us” rather than club-wielding thugs.

Only in the past 20 years have Neanderthals been discovered to share modern human DNA, coinciding with the discovery of many similarities over differences. For instance, burial practices, caring of the sick and a love of art.

This reimagining of Neanderthals is historically and politically interesting because it draws on contemporary ideas about race and identity. But also because it recasts the popular narrative of human evolution in a way that prioritises human creativity and compassion over disruption and extinction.

THE NEGLECTED HISTORY OF THE HUMAN FACE

It is creativity and imagination that determines the friendly facial expression that makes Shanidar Z sympathetic and relatable.

We don’t know what kinds of facial expressions were used by or were meaningful to Neanderthals. Whether or not Neanderthals had the vocal range or hearing of modern humans is a matter of debate and would have dramatically influenced social communication through the face.

None of this information can be deduced from a skull.

Facial surgeon Daniel Saleh told me about the cultural relevance of Shanidar Z: “as we age, we get crescentic creases [wrinkles] around the dimple – this changes the face – but there is no skeletal correlation to that.” Since facial expressions like smiling evolved with the need for social communication, Shanidar Z can be seen an example of overlaying contemporary ideas about soft tissue interaction on the bones, rather than revealing any scientific method.

This matters because there’s a long, problematic history of ascribing emotions, intelligence, civility and value to some faces and not others. How we represent, imagine and understand the faces of people past and present is a political, as well as social activity.

Historically, societies have made the faces of those they want to be connected to more emotionally empathetic. When cultures have determined, however, certain groups they don’t want to connect to and, in fact, want to marginalise, we have seen grotesque and inhuman ideas and depictions rise around them. Take, for example, anti-Black caricatures from the Jim Crow era in the US or cartoons of Jewish people made by the Nazis.

By representing this 75,000-year-old woman as a contemplative and kindly soul who we can relate to, rather than a snarling, angry (or blank featured) cypher, we are saying more about our need to rethink the past than any concrete fact about the emotional lives of Neanderthals.

There is nothing inherently wrong with artistically imagining the past, but we need to be clear about when that happens – and what it is for. Otherwise we ignore the complex power and meanings of the face in history, and in the present.

Originally published at the Conversation

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Filed Under: Popular Culture, project update, Visible Facial Difference

Standardising healthcare: the case of face and hand transplants

April 9, 2024 by Fay Bound Alberti

Standardising healthcare: the case of face and hand transplants

The Author

Fay Bound Alberti

Standardising healthcare: the case of face and hand transplants

In April I was invited to speak at a U.S. National Academies of Sciences, Engineering, and Medicine (NASEM) held a public committee workshop exploring how to standardise care in face and hand transplants. Hand and face transplants are forms of vascularised composite allografts (VCA) and to date they have developed without an international consensus on best practice. This is in stark contrast to other forms of transplantation, especially solid organs.

My project Interface has previously raised concerns about this disparity, especially considering how patient viewpoints have historically been neglected. In 2022 I held a Policy Lab at King’s College London with my project Interface (then AboutFace) to investigate why there wasn’t a standardised approach to face transplants, and what could be learned from bringing together experts from different sectors, countries, and perspectives. Our recommendations were made available online and developed into a publication for the American Journal of Transplantation.

This NASEM committee forms part of an important move towards recognition of the need for standardised care for hand and face transplant surgeries.

I spoke alongside surgical experts and patients, as the committee workshop brought together international perspectives from across the field of hand and face VCA, and a wide range of geographical regions. The workshop was held in two parts: patient perspectives first, followed by specialists in medicine and ethics. Face transplant recipients included Robert Chelsea and Carmen Tarleton; hand transplant recipients, Sheila Advento, William Lautzenheiser, Laura Nataf and Daniel Benner, all of whom brought important perspectives to bear on the question of patient experience. All talked of the health challenges involved in their journeys, and what they wished they had known before undertaking the surgery.

Some of those patients present – like Robert Chelsea – were openly critical about the systems of medical care that meant he, as the first African American to receive a transplant, was effectively used as a form of data, but without any recognition of the costs involved. Everyone involved in the field of VCA was benefitting in some way, Robert remarked – surgeons developing their careers and their grants; institutions developing centres; the field supposedly becoming more advanced – but what of patients like him, whose bodies and consent were critical to that advancement, but without any similar financial or ethical recognition.

Robert’s remarks were not engaged with by the panel members, other than the statement that nobody present was being paid for their involvement, but they are critical in understanding the history of medical innovation and its need for consenting bodies – at least since the Nuremberg Code.

Following Robert, I stressed the importance developing evaluation measures and metrics based on the subjective experiences of patience. This includes not only the physical experience of having a hand or face transplant, or the ways in which adherence to an immunosuppressant regime brings its own medical challenges, but also the emotional and social aspects of facial transplantation that are less commonly considered. And this neglect isn’t surprising given both the history of medical experimentation and the continued difficulties in measuring emotions as easily as one might, say, blood pressure or cell count.

Moreover, the development of surgical specialisms needs to recognise the historical and ongoing subtexts at work in medical encounters, from the history of slavery and experimentation on black bodies to the gendering of appearance.

The history of medicine matters to the practice of medicine now in complex and entangled ways, as Interface shows. It is impossible to talk about innovation of any kind without reference to the lived experience of human subjects, and the ways surgery is conceived of, practiced, and evaluated. Too often those on the receiving end of medical innovation (and indeed many forms of technological change) are the last to be consulted. The NASEM committee workshop marks an important shift in the right direction. We need to build on that and create space for more voices and more perspectives.


With thanks to the NASEM committee for inviting me to speak, and to my fellow presenters: Martin Iglesias (Angeles del Pedregal Hospital, Mexico); Simon Kay, Leeds Teaching Hospital; Laurent Lantieri, Université de Paris, HEGP Hôpital Européen Georges Pompidou, France; Patrik Lassus, University of Helsinki, Finland; Mohit Sharma, Amrita Hospital, Faridabad

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Filed Under: Popular Culture, project update, Visible Facial Difference

NEW YEAR, NEW YOU?

January 10, 2024 by Fay Bound Alberti

NEW YEAR, NEW YOU?

The Author

Fay Bound Alberti

Blog originally posted at Fay Bound Alberti.

Image of Aaron James, recipient of the first eye and face transplant with his surgeon, Eduardo Rodriguez, courtesy of the NYU Langone

NEW YEAR, NEW YOU?

Many of us turn to the idea of self-improvement in the new year, to changing who we are – whether it’s a new gym ritual, a new diet, a new job or hobby – a new face turned towards the world.

The New Year tends to be a time of resolution and change (even if those changes seldom last beyond the first week of February). So it’s no surprise that there’s a spike in cosmetic treatments every New Year as well as a rise in divorce petitions.

We want the face that fits, that reflects our essential sense of self. The face is, after all, the interface (literal and symbolic) between our ‘self’ and other people.

Yet the face that we have changes throughout our lives, and is changed by other factors, deliberate or intentional. Finding out who ‘we’ are throughout those changes is an ongoing process. And that’s one of the core theme of my project Interface, which took up its new home at King’s College London this time last year.

And what a busy year it’s been! Along with moving Interface, I set up the Centre for Technology and the Body, which is part of King’s Digital Futures Institute, and explores how technology intersects with the human body – past, present and future.

The DFI is uniquely concerned with how we live well with technology, a theme that resonates through my work with Interface. The Centre for Technology and the Body held a number of great events in 2023, and we have put together a fantastic programme for 2024, including Joanna Bourke on evil women and Kashmir Hill on digital faces.

Last year was also a year of international travel, with filming for a new project in the US (more on exciting development to follow), and I gave papers on my face transplant research at conferences in Mexico City and Los Angeles to name just two. It is a pleasure to work with surgeons and patients as well as qualitative researchers, as interdisciplinary research is key to my work.

In 2023 I secured (via my Future Leaders Fellowship renewal) the second phase of Interface’s funding from UKRI, into 2027. That funding will continue to support my work on the history, meanings and ethics of face transplants, as well as new work into technologies of the face: from cosmetics and digital filters to facial recognition systems and 3D printing.

As the field of face transplants progresses – 2023 marking the first ever face and eye transplant – this research will continue to cast a critical lens on the meanings of technologies of the face as a cultural and emotional, as well as a surgical enterprise. As the Interface team showed in a recent article, we don’t know enough about the cultural and emotional impacts of face transplants as a specific and still experimental field of human transplantation. The history of emotion, medicine and the body helps us explore pressing issues in the present, as well as the past.

Interface will be advertising for a new project manager in March, to help us manage the exciting and busy years ahead. Watch this space for more information and links.

In the meantime: happy new year everyone!

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Filed Under: Popular Culture, project update, Visible Facial Difference

The making of a blueprint. How historical, qualitative research should inform face transplant policy and practice.

June 1, 2022 by Fay

The making of a blueprint. How historical, qualitative research should inform face transplant policy and practice.

The Author

Fay Bound Alberti

In December 2021, the AboutFace team convened a three-day Policy Lab with the support of the Policy Institute at King’s College London. The Policy Institute has a track record of bridging the gap between research, policy and practice, and making recommendations to UK policy makers. But the AboutFace policy lab was not looking to shape UK government policy around face transplants. Rather, its rationale was quite different.

The making of a blueprint. How historical, qualitative research should inform face transplant policy and practice.

One of the purposes of AboutFace research is to bring interdisciplinary, international expertise to bear on some of the pressing challenges around face transplants. I developed this programme of research into the history and ethics of face transplants because I wanted to ensure that all stakeholders were brought into the discussion: people with lived experience of visible difference, qualitative researchers, and extended surgical teams. The reasons why are quite simple.

Since 2005, when the first face (partial) face transplant took place, the emphasis has shifted in ethical debate from whether it could or should happen to how it happens. Yet many of the issues raised in 2003 and 2006 by the Royal College of Surgeons are still problematic. Heavy use of immunosuppressants carry a health burden for the whole patient and are life-reducing. The estimated length that a face transplant will survive is ten years, though there are some exceptions. There is no consensus on how patients should be selected, and no real data sharing across boundaries. There is not even any agreement on what success looks like in face transplants, a subject I am talking about at the International Society for Vascularized Composite Allograft conference in Cancun this week.

Creating a Gold Standard

In bringing experts from all around the world together, we wanted to create a blueprint that makes recommendations for best practice; a gold standard in how far transplant policy and practice should be led. We were heartened by the consensus in the room, and by the simplicity – but importance – of the recommendations being made to surgical teams to ensure patients receive the best possible treatment.

We believe that this Blueprint is also an example of how qualitative, historically-informed research can help shape and inform surgical practice, and make an international impact. We have included sections on patient selections and expectations, clinical frameworks, patient support networks, public image and perception, financial sustainability and data on patient outcomes and progress.

While this report has a surgical focus, because we are reaching out to extended surgical teams and nurses around the world, we will also be working to engage patients and their families with our findings. We will be releasing a series of videos and discussion points over the coming months. In the meantime, we invite you to read the report and let us know what you think. Any questions, ideas or concerns, get in touch with us.

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Filed Under: Face Transplant, faces, facial surgery, history, project update, transplant, Transplant surgery

Emotion, Lived Experience and Caring in AboutFace

March 21, 2020 by Fay

lived experience and caring

Emotion, Lived Experience and Caring in AboutFace

The Author

Victoria Hoyle

The Thursday installment of our Face Equality Week blogs comes from the project’s Research Associate, Victoria Hoyle.

Emotion, Lived Experience and Caring in AboutFace

AboutFace takes the position that research is not solely an intellectual activity. It is also emotional and sensory, impacting the body and the mind, and generating physical responses and feelings that become part of the process of creating new knowledge. This is central to our understanding of what it means to engage with the personal and traumatic experiences of individuals, including face transplant recipients and their families, donor families, and people living with facial difference.  It is also an integral part of working with professional communities – of surgeons, nurses, psychologists, ethicists and extended medical teams – who, despite the apparently scientific and objective basis of their expertise, also have complex emotional entanglements in their work. Reflection on these entanglements, as well as personal emotional discovery and empathy shape our research practice, in what has been described as ‘affective scholarship’.

Recognising the value of lived experience as a form of expertise is central to this approach. In particular, acknowledging those whose experiences have previously been marginalised or voices silenced in medical settings.  For example, while there is a voluminous and expanding literature of on the functional, surgical and aesthetic outcomes of facial transplantation, there has been no attempt to understand the experience of the procedure from the point of view of the recipient. Very few medical teams have worked with people with significant facial difference, some of whom may be potential candidates for transplant, to explore the surgery’s implications, meanings and challenges. Questions about appropriateness, ethics, identity, and what success looks like have happened within a scientific discourse.

Our aim is to change that, by focusing on what facial difference and face transplant mean to those directly involved and impacted.  As Linda Finlay describes it, we want to understand ‘the world as directly and subjectively experienced in everyday life, as distinguished from the objective physical world of the sciences’ (Finlay, 2009). Speaking to recipients and potential recipients, and their families, as well as donor families and wider facial difference communities is critical to this.  Rather than thinking about validated measures of quality of life or psychological wellbeing, which turn individuals into numbers and data for analysis, our aim is to build a rich, embodied description of face transplants as a human phenomenon.

AboutFace is doing this on two levels. Firstly, by working with our Lived Experience Advisory Panel (LEAP), which is made up of individuals with facial difference who are specialists in areas such as research practice, evaluation, patient participation and involvement, disability rights and advocacy. This group helps to shape the direction and priorities of the research, to ensure that the interests, needs and concerns of people with facial difference are given equal weight to those of other stakeholders as the project develops.

Secondly, by speaking to patients and families directly as part of an oral history process. This process focuses on collecting memories, opinions, thoughts and feelings, outside of existing medical or psychological frameworks for assessing people’s experiences. Our aim is to listen, reflect and consider individual narratives, respecting each person’s point of view as an autonomous, sense-making individual. Over the course of the project we intend to speak to over 100 people with lived experience of facial difference in this way, alongside surgeons, medical teams and others involved in the development of face transplantation.

As a researcher I have experienced the multiple benefits of centralising emotion and lived experience in this way. During the MIRRA project (Memory-Identity-Rights in Records-Access, UCL, 2017-2019) I worked with adults who had been in care as children, to explore their personal histories through the records that had been created about them by social workers, foster parents, the courts and others. The ultimate aim of the project was to develop a new framework for access to care records, to be used by social workers, information managers and care providers. This could have been achieved by desk research on best practice; by speaking to practitioners about structural barriers and challenges, and by designing routes for policy change within organisations. However, by involving care leavers as both co-researchers and participants the project found that the issues and challenges were not solely, or even mostly, procedural or structural.  They arose from the deeply personal resonances that records had for care-experienced people, who used them to fill gaps in their memories and answer critical questions about their early lives (Shepherd et al, 2020). It was the misalignment between individual’s emotional needs and institutions’ bureaucratic systems that led to poor, hurtful access to records experiences.

As a result we developed a framework that focused on love and respect rather than on retention schedules and data protection rules. The former were critical to fulfilling the needs of care-experienced people, for whom the mundane records of local authorities were the equivalent of photo albums and family stories.  We concluded that processes should arise from a fundamental appreciation of emotion and trauma, in a way that acknowledged the individual as a person rather than as the ‘subject’ of ‘data’.  This is what AboutFace also hopes to achieve: an understanding of the global history of face transplants from the multiple perspectives of people rather than of systems, data or theories.  This understanding can then be put to work in discussions about the appropriateness, success and value of transplantation.

Max van Manen (1990) describes this kind of lived experience-centred research as a ‘caring act’, which stems from a desire to deeply understand and do right.  He cites Goethe’s Elective Affinities, linking the pursuit of knowledge with the necessity of caring for the object of that knowledge:

‘One learns to know only what one loves, and the fuller the knowledge is to be, the more powerful and vivid must be the love…’

Which brings us back to the importance and potential of emotional and embodied research.  Although we may not categorise our feelings about our co-researchers, colleagues or participants as ‘love’ in the narrow sense, the broader perspective of the concept, grounded in notions of equality, respect and caring, is essential to the AboutFace research design.

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Filed Under: face equality, project update, Visible Facial Difference

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