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Transplantation narratives on screen: a Halloween blog series

October 14, 2022 by Fay

Interface face

Transplantation narratives on screen: a Halloween blog series

The Author

Fay Bound Alberti

An introduction to our October blog series, exploring the ties between transplantation and the horror film genre. Don’t miss blogs on Les Yeux sans Visage, The Eye, and Hollywood’s negative representations of facial difference.

Transplantation narratives on screen: a Halloween blog series

At InterFace we work according to a strict code of ethics around respect for human life and dignity. We care about the language that we use to talk about facial difference and appearance, and about the emotional, ethical and socio-economic challenges of transplantation. That work and care, takes place within a wider cultural context in which the major themes of our research – facial difference and transplantation – are not always treated with sensitivity or regard for human experience. Indeed, as the founder of Face Equality International and our own Sarah Hall has shown, facial difference is associated with negative personality traits in popular culture; Hollywood “baddies” carry facial scars that mark them out as separate from (and antithetical to) civilised society.

Transplantation is also a subject that has, since its inception, generated considerable public interest and anxiety. Transplanted organs, as historians of literature, film and ethics, have shown, are invested with a wide range of meanings, whether it’s the Hands of Orlac (1924) which an experimental graft gives a concert pianist the hands of a murderer – who continues to murder. Or Face/Off (1997) in which FBI agent Sean Archer (John Travolta) and master criminal Castor Troy (Nicholas Cage) change faces, and with it their entire social and familial identity. Stories of body swapping, organ harvesting and enforced donation have been part of the literary landscape since the 1960s, and these influence, and contribute to, broader social and political concerns about bodies, citizenship, and personhood.

Throughout October, and as an antidote to the casual exploitation of horror narratives around appearance and the limits of the body, we will be reflecting on transplantation narratives in fiction, with a series of fascinating guest blogs: Sara Wasson will be writing about Eyes without a Face (1960), a film that invites audiences to contemplate ‘unbearable and unspeakable’ around transplant ethics; Lauren Stephenson will be writing about The Eye (2002), a film that, like Hands of Orlac, continues the fear of the ‘haunted organ’; and Paddy Adamson will be exploring the Hollywood’s exploitation of spectacles of facial difference. Thank you to all our contributors.

Further reading

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Filed Under: Face Transplant, Popular Culture, Transplant surgery, 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.

Further reading

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

Diminishing their Voices: Face Transplants, Patients, and Social Media

October 13, 2021 by Fay

Diminishing their Voices: Face Transplants, Patients, and Social Media

The Author

Patrick Adamson

Public Engagement and Events Officer, Sarah Hall, writes about facetransplant patients and social media. In this blog, Sarah explores the familiar narratives that circulate in the media, and argues that the primary voice should be restored to the patients themselves, giving them control over their own narratives.

Diminishing their Voices: Face Transplants, Patients, and Social Media

A video showing a woman inside a spider monkey enclosure at El Paso Zoo, Texas, started circulating on social media in late May 2021. The woman allegedly broke into the enclosure to get a video of her feeding the monkeys Flamin’ Hot Cheetos. She did so for her social media channels. The video predictably gained a lot of attention, much of it negative. Commenters decried the woman’s reckless disregard for her own and the animals’ safety. These reactions are familiar to those of us on social media. Whether because of the relative anonymity that it affords, or because we are so strongly encouraged to share our opinions on any given issue, we are used to witnessing, feeling, any maybe even contributing to waves of collective outrage. But such moments are fleeting, and the outraged crowd will flock to a new issue before long. 

Social media is core to my work on AboutFace. The Institute of Historical Research’s History Labs+ recently invited me to speak about my work in this area. Namely, on how we present sensitive histories on our social media channels. Over the past six months I’ve come to realise that social media is capable of being far more than a tool for disseminating research. Additionally, it can be a space in which to conduct research. A valuable place to connect with trends, conversations, and public feeling. 

Drawing Parallels

It was while looking for recent tweets mentioning face transplants that I came across the video of the woman in the spider monkey enclosure, and the vitriol that followed it. I noticed that a number of angry responses mentioned Charla Nash. Nash (pictured) received a face transplant in 2016, after being brutally attacked by her friend’s pet chimp in 2009. Tweeters drew parallels between the real life attack and the potential for a repeat occurrence. However, few actually named Nash. Comments instead mentioned ‘the woman overseas who needed a face transplant’. One referenced what happened to Nash indirectly, writing ‘I see a face transplant in her future’.

Unusually, a number of replies came from British authors, who may have recently been reminded of, or learned about the event for the first time in a recently published Daily Star article. The article presented a graphic description of the attack, including audio of the 911 call made by Nash’s friend.

The news of Nash’s attack circulated widely in the US when it happened. And follow up coverage shared news of her face transplant. But coverage in the UK was limited to a few sensationalist pieces in the tabloids, while the broadsheets focused on surgical innovation. There is likely a link between the publication of the Daily Star article and the references to Nash’s attack in tweets from British authors. Tweets largely focused on the event, on the chimp, not on Nash herself, echoing the tone of the article. 

Familiar Narratives

Face transplants receive diverse treatment in social media. From flippant remarks to government conspiracies, fascination to condemnation and mockery of the aesthetic outcomes. Stories such as Nash’s circulate in public discourse according to familiar scripts. They are presented like films, featuring protagonists and antagonists, and readers treat them accordingly. Both social and news media present a fragmented view of reality, distancing audiences from the actual trauma of events. This process is exacerbated by the fact that most face transplant recipients are rarely the protagonists in their own stories. For Nash, people remember the chimp, Travis, before they remember her. They remember the attacker, not the attacked. If you Google ‘Charla Nash,’ the first result is the Wikipedia page for Travis, which remembers him both as perpetrator of the attack and tragic ‘child star.’ 

Contributing to this is the plurality of online discourse. Nash’s story, no longer simply her own, has been hi-jacked by multiple different parties. Just as some news outlets have used it to hail the victories of the surgeon leading her treatment, others have used it to mourn the tale of a wild animal raised in captivity. On social media, it circulates as a warning, a lesson against reckless contact with animals. Not long ago, it was employed to mock the people who had responded to a YouGov survey, claiming that they would beat a Chimpanzee in a fist fight. 17% of respondents answered that they would win. In these public spaces, Nash’s story is not her own, despite her efforts to present her own narrative. 

A fixed moment?

When the media, hospitals, and surgeons share news of completed face transplants, naming the patients, they catapult them onto the world stage, and directly into the public eye. Instantly, these patients’ stories are available to be picked up, claimed, shared, and transformed by others. Patients become supporting characters in other stories. I even find myself asking: were they were ever presented as something more? At AboutFace, we are concerned about this process. 

Face transplant patients are patients for the rest of their lives. There is no final ‘healed’ state, where they will no longer need medical care to monitor the donated tissue for signs of rejection. They may even have to undergo further surgeries to improve the function of their new face. But these are not the stories that are presented to the public. The people who continue to make passing, flippant remarks about face transplant, are presumably not aware of the ongoing challenges that transplant patients face. But there is no good reason that they should not be made aware. 

There is a sense, almost, that the moment the patient was presented to the media, their story became fixed in time. And it is that moment, that memory, that holds pride of place in the public consciousness. That is the moment that circulates periodically on social media, sitting below the surface until familiar details emerge in current events or conversations. Even then, it is sensationalised. These patients, who did not choose the spotlight, have been given it nonetheless.

Public Perception

It’s notable that the people referring to Nash’s story online rarely know more than the most basic details of her story, and even these details are not always accurate. As these narratives are picked up and reframed to suit the story being discussed, they take on new life. But what happened to the patient’s story in the process? 

With the distance afforded by the internet, social media users are removed from the reality of the people whose stories they co-opt. Face transplants can, in this space, continue to exist as both medical miracle and science fiction, and everything in between. The patient almost becomes irrelevant in the effort to prove a point, make a joke, or impress with a display of knowledge. But these narratives are still important to AboutFace, because they provide insight into public perceptions of face transplant. As an experimental procedure, where fewer than 50 have been performed worldwide, face transplants are still not common knowledge. We seek to understand what people know, what they want to know, and how we might contribute to more productive narratives. 

In this process, social media becomes an important research tool. We can quickly tap into the swift moving debates, opinions, and currents of public opinion. In few other spaces are people so willing to share their innermost thoughts. The anonymity afforded them provides a safety net. The nature of social media means that thoughts are shared instantaneously, without the pressure of, say, an online survey where people may seek to impress or please a reader, rather than honestly sharing their thoughts. Social media remains a performance, but it is a performance to which we have a front row seat.

Providing a Voice

When face transplant patients are not the protagonists in their own stories, something is wrong. They do not have control over the way that their narratives are told. It is time for that to change. At AboutFace, we believe that restoring the patient to the centre of the narrative is essential if we are to fully understand face transplantation and its outcomes. We speak to patients, as well as the medical teams who work with them. In doing so, we seek to place greater attention on patient reported outcomes. This means identifying ways in which medical teams can more effectively record what it means to live with a transplanted face, and what success looks like. In doing so, we will give a voice to the people who are actually at the centre of the story.

Author Bio

Sarah is Public Engagement and Events Officer on the AboutFace project. She is an experienced events manager with significant experience in the Higher Education sector, and is interested in engaging with creative methods for disseminating academic research to different audiences. She manages the social media profiles for the AboutFace project, and offers training in social media use for ECRs. Sarah is a passionate believer in the benefits of interdisciplinary research and collaboration. She is also interested in academic outreach, and is committed to making research widely accessible to non-specialist audiences. Using a combination of qualitative and quantitative methodologies, Sarah’s research is interdisciplinary and engages closely with digital humanities.

Further reading

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Filed Under: ethics, Face Transplant, faces, facial injury, facial surgery, history, human rights, transplant, Transplant surgery

Robert Chelsea and the First African American Face Transplant: Two Years On

July 15, 2021 by Fay

Robert Chelsea and the First African American Face Transplant: Two Years On

The Author

Fay Bound Alberti

On 27 July 2019, Robert Chelsea became the first African American to undergo a face transplant. The facial injuries that led to a transplant occurred six years earlier, when a drunk driver struck Robert’s car, causing an explosion and third-degree burns over 60 per cent of his face and body. Robert received multiple reconstructions over several years. Once they had done all they could, his surgeons suggested Robert spoke to Bohdan Pomahac and his team at Brigham and Women’s Hospital in Boston. 

Robert Chelsea and the First African American Face Transplant: Two Years On

Bohdan Pomahac and his team had performed the second partial face transplant in the USA on James Maki in 2009, and the first full face transplant in the USA on Dallas Wiens in 2011. By the time Robert was referred to the team, there had been fewer than 50 face transplants around the world, and none, as yet, on an African American patient. In his late 60s, he was also the oldest patient to date that had been considered for facial transplantation. Pomahac, meanwhile, had established himself as one of the world’s leading experts in the field. Would he and his team be able to provide the improvements in form and function that were sought by Robert: to enable him to eat and drink normally? To walk down the street without people staring, and insects falling into his mouth? To kiss the cheek of his daughter Ebony? 

The First African American Face Transplant Patient

The decision to undergo the procedure was relatively swift for Robert, though the wait for a donor took time. A devoutly religious man, Robert believed that God had paved the way for the face transplant, putting Pomahac and his team in his path. For Robert’s family and friends, the decision was less cut and dried. Ebony worried that her father had already undergone more surgery than anyone could be expected to endure – how could he voluntarily undergo more? Her mother talked her round. Her father was doing it for reasons of ‘health’; he needed to be as well as he could be, even if that meant undergoing such a radical and risky procedure. 

Robert’s transplant has been the subject of many media stories, focusing not only on the fact of his being the first African American to receive a face transplant, but also on his being the oldest such patient to date. There has been coverage, too, of the racial nuances involved; the fact that of course Robert needed a face that reflected the right skin tone for him. The hospital did not, until Robert’s operation, cover a wide range of skin tones when it came to matching donors and recipients; it took Robert’s procedure for them to rethink the implicit racism of the default White face transplant recipient. For his part, Robert has openly engaged with questions of racial inequalities in the system: the fact that for historical and social reasons there are fewer Black donors of all kinds than White. This gives Robert’s journey an additional sense of purpose: perhaps his media profile can pave the way for more public conversations about organ and tissue donation. 

Robert Chelsea. Image courtesy of Brigham and Women’s Hospital

The Hidden Costs

When I spoke to Robert and his daughter Ebony, and to Robert’s godson Ricky, as well as some of Robert’s friends in advance of the second anniversary of his transplant on 27 July 2021, I was struck by the thoughtful reflectiveness of everyone concerned, and by the love and support that surrounded him. I was also reminded that Robert’s journey towards health is an ongoing one. One of the core concerns of the AboutFace project is the largely neglected cost for patients: social, psychological, financial, and physical. Because while most media reports focus on such innovative procedures as surgical milestones, and the visual transformations that can take place, there has been far less attention given to the lived experience of patients and their loved ones. 

A face transplant is a highly visual shift from one form of appearance to another. Less visible, but equally important, are the behind-the-scenes challenges that patients must go through every day. At a physical level, there is a punishing regime of medications that include the immunosuppressants that prevent the rejection of donor tissue, and also come with a wide range of side effects besides the body’s weakened immunity to disease. In the first instance these include loss of appetite, nausea, vomiting, and trembling. Immunosuppressants can also cause other conditions, including diabetes and kidney disease. 

Alongside these physical challenges are the social costs, as a patient is generally unable to work, as even when feeling relatively well. Being a long-term patient is time-consuming, and individuals rely on a steady stream of caregivers, paid and unpaid. Financially, the costs of those caregivers, of the medications, of travel to and from the hospital and day to day living expenses can rise far beyond that which is covered by medical insurance. Indeed, insurers do not tend to accept face transplant patients because it remains experimental medicine; the majority of such operations in the US have been paid for by the military. 

Quality of Life for Patients

It is critical that we, as a society, and within medicine, start to acknowledge these hidden costs, that are not as transformative, dramatic, or immediately visible as the surgical procedure, but equally important to determining how far face transplants can be counted as successful. Quality of life for face transplant recipients must include not only some of the functional and psychosocial aspects of the procedure, in this case Robert’s ability to eat and drink normally, to kiss his daughter, and to avoid the stares of others, but also the implications for long-term health and care. Most face transplant recipients in the US (and potential recipients) need to fundraise to provide for this care, though its requirement can be seen as a side effect of the procedure itself. Quality of life must also consider the psychosocial implications of becoming a lifelong patient, with all the challenges to identity and meanings that this brings. 

The work that we are doing at AboutFace, in collaborating with surgical teams, patients and their families, ethicists, sociologists, psychologists and people with lived experience of visible facial difference, shows how critical stories like Robert’s are to the historical framing of face transplants. Medicine does not, and has never, taken place within a vacuum. Like all other aspects of society, it is influenced by beliefs about race, ethnicity and gender (whether in the question of skin tone or  presumptions about acceptable female appearance), and it is intensely emotional. Not only for patients, whose journeys towards health can be arduous and circuitous, in terms of outcomes as well as the emotional stamina needed to keep going, but also for surgical teams, who balance ‘risk’ and ‘need’ alongside their own personal and professional desires to progress the field. 

Measuring Success

Historically, the experience of patients has not been core to evaluating the success of a surgical procedure. Christiaan Barnard’s first successful heart transplant in 1967 was not so successful for the patient Louis Washkansky, who died after just 18 days. Of course, surgeons care about their patients, but the long-term effects on the lives of patients and their families tend not to be prioritised when evaluating the clinical outcomes of procedures that are innovative and path-breaking. 

In part this hierarchy reflects the fact that ‘quality of life’ measurements (like many categories associated with ‘mental health’) are inherently subjective, but it also reflects the ways medicine advances by implicitly prioritising the future needs of the many over the present few. Indeed, it is only within the last couple of years that surgical teams have begun collecting patient reported outcomes, and comparison between countries and institutions remains rare. We urgently need a more open and balanced discussion of human experience, and historical, comparative analyses of patient-reported outcomes alongside clinical findings, to evaluate the evolving role of face transplants. Listening to people like Robert Chelsea is a good place to start.

Further reading

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Filed Under: Face Transplant, faces, facial injury, facial surgery, history, transplant, Transplant surgery

When face transplants fail: Carmen Tarleton and the world’s second retransplant

March 5, 2021 by Fay

When face transplants fail: Carmen Tarleton and the world’s second retransplant

The Author

Fay Bound Alberti

What happens when face transplants fail? Project lead Fay Bound Alberti discusses Carmen Tarleton’s retransplant in this blog on donation, innovation, and patient voices.

When face transplants fail: Carmen Tarleton and the world’s second retransplant

In 2007, Carmen Tarleton was attacked in bed by her ex-husband, who broke into the home where she lived with her daughters. He hit her with a baseball bat, then covered her face and body in industrial lye. Carmen’s injuries were so terrible that her doctors at Brigham and Women’s Hospital put her into a medically induced coma for three months. 

Carmen underwent at least 55 separate surgeries before she was given a face transplant in 2013. She had also undergone multiple blood transfusions, and this exposure to other people’s blood made the rejection of her face transplant more likely. As a nurse for 20 years, Carmen was aware of the challenges of rejection, as she explained in an interview with the BBC. Her face transplant was widely reported, and she was interviewed for the BBC in 2015. 

Identities

Asked what created her identity, Carmen replied that she had been a ‘disfigured person’ and a ‘person who had a new face’, and that the process had been strange and unsettling, though the ‘core’ of her identity unchanged. When she started dreaming again, which she did some months after the procedure, she began to dream about herself with her new face, suggesting some deep psychological acceptance. 

In surgical terms, Carmen also made an exceptional recovery. CNN reported how she had ‘fulfilled her wish to kiss her boyfriend. She wrote a book, headlined an organ donor float in the Rose Parade, lectured about resilience, learned to play the banjo and became a hands-on grandmother’. Carmen Tarleton, speaking at the Congress of Future Medical Leaders in 2018 shared her secrets of resilience in an extraordinary and moving presentation.

No simple ‘before’ or ‘after’

There  was no simple ‘before’ or ‘after’, however, between the ‘old’ and ‘new’ lives and faces, and this is a running theme of the work of the AboutFace project. As a society we tend to focus on transformations (of houses, landscape, weight, faces), but the reality is far more complex. Any long-term patient will experience multiple, often conflicting, emotional responses. Surgically and emotionally there will be successes and failures, good days and bad days. Like any transplant patient, moreover, Carmen lives with the day-to-day possibility of rejection; that her body would start to reject the organ she had received.  

And rejection is something that all face transplant recipients will experience, albeit to different degrees. Unfortunately, for Carmen, this process became impossible to reverse. By 2019, parts of Carmen’s face began to die as its blood flow was restricted; she began to lose some of her transplanted hair and eyebrows, and part of her left nostril. Her surgeon Bohdan Pomahac and others at Brigham and Women’s Hospital in Boston believed that the only option was another transplant, an even more challenging prospect than usual given the Covid-19 pandemic. 

Second face transplant

Carmen’s second face transplant made international headlines, just like the first. Some of those reported, incorrectly, that this was another surgical first: that there had never before been a retransplant. NBC News’ Today programme ran with the headline: ‘Domestic abuse survivor becomes 1st person ever to receive 2nd transplant.’ 

This is not the case, though Carmen’s second transplant was a first for the USA. In 2010 the French surgeon Laurent Lantieri performed the first face transplant on Jerome Hamon in 2010 in Paris; the second in 2015, after Hamon was given drugs that interfered with his anti-rejection medication. 

Carmen’s second face transplant took place over two days, which is unusual; she needed to be stabilised in the ICU halfway through the surgery due to excessive bleeding, and so the face transplant was resumed the following day. Given the excessively long surgeries involved in face transplants, ranging from 20 to 30 hours, the fact that in this case the procedure was able to take place over two days put less pressure on the surgical team. This might even be a model for future face transplants, according to Dr Pomahac. 

Carmen has met the family of her second face transplant recipient, just as she met the first. Her surgeon has told her that the transplant might only last for seven years, like the first, but Carmen is unconcerned about the future ‘I believe this face is going to last me until I leave the Earth’, she said in an interview to People magazine. ‘It is my last face. I won’t have a third’. 

Progress

The success of Carmen’s second face transplant shows how far the procedure has come, in terms of managing immunosuppressants, surgical skills and expertise, and the preparedness of the public to conceive of face transplants as an acceptable form of transplantation. Carmen’s donor family was unsure, the second time round, whether donating their loved one’s face was something they could do. 36-year-old Casey Harrington had died of a drugs overdose, leaving behind a 15-year-old daughter. And the family was understandably grief-stricken. 

Although Casey’s organs saved five more people, it was the idea of donating a face that was difficult for them emotionally. At least in the beginning. Researching the procedure, learning about its life-changing nature for other people, is what swayed their decision. The family and Carmen have since met online, and, after the lockdowns caused by Covid-19, they intend to meet in the flesh. 

Public conversations

Raising the profile of face transplants in the media encourages people to donate the faces of their loved ones. But it also opens up a space for a public conversation about the challenges involved – physical, emotional and social – of the circumstances by which people end up as face transplant recipients or donors, and the multiple impacts of the surgery. The voices of patients like Carmen need to be heard if we want to understand the emotional and physical impacts of face transplants as a form of surgical innovation. This is why it is critical to move away from headlines that stress the competitive and revolutionary nature of face transplants (the drive to be ’the first’ having long dominated the history of medical innovation) towards a more patient- and person-centred understanding of face transplant.

Further reading

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Filed Under: Face Transplant, faces, facial injury, facial surgery, history, transplant, Transplant surgery

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