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‘Like Changing a Windshield on a Car’ – Transplantation and The Eye (2008)

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‘Like Changing a Windshield on a Car’ – Transplantation and The Eye (2008)

The Author

Dr Lauren Stephenson

This piece on transplantation and The Eye (2008) is the second blog in our series on Halloween, Horror Films, transplantation and the face. In this installment, Lauren Stephenson (York St John) explores the tensions between science and the body, and matters of the soul and the self. Catch up with the other blogs in the series, by Fay Bound Alberti, Sara Wasson and Paddy Adamson. Our final blog in the series, by Paddy Adamson, will be released next week

‘Like Changing a Windshield on a Car’ – Transplantation and The Eye (2008)

The Eye (2008) is a U.S. remake of the earlier Pang Brothers film Jian Gui, released in 2002, which arrived in theatres as the Hollywood penchant for adapting successful (and sometimes notorious) East Asian horror films reached its zenith. As such, it is perhaps most often discussed as part of a debate regarding remake culture in the U.S., within which fans and scholars alike tend to become combative over the superiority of the original texts, and uninhibited in expressing their disappointment with their often cynically marketed remakes.

What becomes lost or minimised during this debate, however, is how both films (original and remake) attempt to re-examine our relationship with our corporeal selves, passing commentary on the ethics of transplantation by focusing not on the procedure itself, but rather the protracted process of adjustment and recovery which follows it. For the purposes of this piece, I’ll be focusing in particular on the U.S. remake of this transplantation narrative, which reveals an ambivalent stance towards medical procedure, but demonstrates tangible anxiety regarding notions of selfhood and identity after transplantation has occurred.

A ‘haunted organ’

The film begins by introducing us to our protagonist, Sydney (Jessica Alba). Sydney has been without sight since she was 5 years old, when an accident with fireworks damaged her eyes. In the opening moments of the film, Sydney monologues about her desire for sight and vision; a musician by profession, Sydney comments; ‘I bet music looks beautiful’ – an interesting comment which seems to suggest that even predominantly auditory experiences are, for Sydney, incomplete without her sight (an ableist narrative which is equal parts challenged and reinforced throughout the unfolding film).

This desire to regain her sight and restore a ‘complete’ experience leads Sydney to attempt a bilateral cornea transplant (the representational accuracy of which is questionable). We learn later that this isn’t the first time she’s undergone the procedure, with her first transplant corneas rejecting during a procedure when she was 12 years old. Following a successful second attempt, the film begins to shift consistently between a conventional third person perspective and Sydney’s first-hand POV, hypothetically placing the audience in the position of a recovering cornea transplant patient. Sydney’s vision is, to begin with, blurred, and it is here where the film’s central conceit – that of the ‘haunted organ’ – begins to exploit the recovering organ and patient as facilitators for horrific ambiguity. Sydney, and by extension the audience, begin to witness blurry figures and unexplainable visions; it quickly becomes clear that Sydney’s eyes have not only given her sight in the conventional sense, but have left her with the ability to see what others can’t: the dead.

Recovery

Sydney’s status as a recovering transplant patient means that her authentic experiences of her new eyes are readily dismissed as hallucination or a failure to adjust post-op. Medical professionals are conspicuously absent from the narrative, with the most consistent representative of the medical field being a Dr Faulkner (Alessandro Nivola), a post-transplant specialist whose behaviour throughout the film vacillates between gaslighting and romantic interest. As Sydney’s sight improves, so too do her supernatural visions become more vivid. Seeking help from Dr. Faulkner, his troubling and flippant response seems to suggest that Sydney’s vision are not only imagined, but a device to maintain her sense of self as ‘special’ following her op:

Faulkner: ‘You just discovered that you’re like the rest of us’

Sydney: ‘You know, when we first met, I didn’t think you were such an ass’

Faulkner: ‘That’s ‘cos you didn’t know how to spot one. See? Progress.’

Denying Subjectivity

The reframing of Sydney’s ongoing trauma as something self-inflicted and self-interested poses an interesting ethical question; Faulkner’s response denies Sydney subjectivity, autonomy and respect in her recovery, delineating her instead as a gothic heroine and hysterical woman (Showalter, 2000: 190). In framing Sydney’s narrative within the confines of transplantation, and with a fixity on eyes and vision, the film makes explicit the conventional use of the unreliable narrator; Sydney’s recovering vision means that what she witnesses can easily be derided or explained away.

The donor’s eyes thereby become a narrative metaphor for the routine marginalisation of women’s voices and experiences. The donor’s death, we learn later, was at the hands of her community who failed to heed her supernatural warnings of an imminent factory fire, later blaming her for the incident once lives had been lost. When these become Sydney’s eyes, the shared vision of donor and recipient combines to present a reasonably compelling account of the systemic dismissal of women’s accounts and experiences. However, this allegory comes at the expense of dramatising and exploiting the very real disorientation, dissociation and loss of selfhood associated with transplant recovery.

Credit: Richard Foreman/Lionsgate

An ‘ideal’ horror heroine

With this in mind, despite the ways in which the film draws upon established conventions of the ghost and the body to create its impact, some of the most unsettling moments within the film come not from scenes of overt horror (though there are several) but from the way in which Sydney, her regained sight and her recovery are treated by her friends, her doctors and colleagues in the first act of the film. In one early scene, Sydney returns to her home post-surgery, only to find it filled with family and friends, hosting her a ‘surprise’ welcome home party. As faces, some of which she’s never seen before, swim before her, we experience a sense of overwhelming claustrophobia – an experience which eventually drives Sydney to retreat into the kitchen, away from the crowds.

In another instance, Sydney’s conductor becomes noticeably agitated and frustrated when it appears she cannot immediately adjust to playing her violin sighted after the operation. It would appear that the timeline for Sydney’s recovery, and indeed the way she processes that recovery, is consistently framed within the expectations of others. Her recovery is either not fast enough, not full enough, or not simple enough, to sustain investment from any of the other principal characters within the film, and this creates an isolation that sustains her as an ‘ideal’ horror heroine.

The Body and the Self

Later in the film, Sydney is shown a photo by her sister, and realises that the woman she is seeing in the mirror isn’t her (this recalls a moment in her opening monologue, where she comments that she doubts she will even recognise herself once her sight is restored). The woman Sydney sees in the mirror is in fact her donor, and the dissociation this speaks to, however clumsily, seems to demonstrate some fear or anxiety surrounding the nature of the body itself, and its relationship with the person, soul or being that inhabits it. This is particularly pronounced in that the organ here is the eye; the ‘window to the soul’.

Notions of ownership and selfhood are explicitly challenged here; Sydney’s eyes work in tandem with her body, yet they show her images, visions and events past and present, not all of which belong to her, and none of which she has control over. Indeed, in the final act of the film, Sydney embraces her role as a kind of ‘custodian’ of her donor’s eyes, allowing to be guided by the premonition she has been seeing in excerpts throughout the film. She saves countless lives in doing so (thereby inferring that this was the correct and heroic thing to do) but also sacrifices her sight once again to ensure the safety of others.

Sacrificial Heroine

In the end, the supernatural and a pseudo-religious belief in the soul and afterlife trump science in The Eye. Unlike many ‘surgical horrors’, which characterise science as ‘the deus ex machina, promising to restore limbs and faces that have been irremediably lost’ (Aldana-Reyes 2014: 147), The Eye, and Sydney as its protagonist, regard science as a means through which to restore something less tangible – Sydney’s relationship with her donor eyes restores justice and peace to her donor and delivers dozens of people from death at the hands of a freak accident.

In its complicated relationship with the ethics and responsibilities of the transplant industry, the film eventually side-lines a consideration of transplantation itself in favour of casting Sydney as saccharine sacrificial heroine; one whose relationship to her new eyes is happily relinquished in the interest of saving others.

That the final scene of the film imagines Sydney as more complete and fulfilled without her donor eyes than with them speaks volumes; transplantation here is seen as a means to a narrative end – in The Eye, matters of science and the body are no match for matters of the soul and self.

Works cited:

Jian Gui (dir. Pang Brothers, 2002)
The Eye (dir. David Moreau & Xavier Palud, 2008)
Reyes, X.A. (2014). Body Gothic: Corporeal Transgression in Contemporary Literature and Horror
Film. (Cardiff: University of Wales Press).
Showalter, E. (2000) ‘Dr. Jekyll’s Closet’ in Ken Gelder (ed.). The Horror Reader. (London: Routledge).
p.190.

Author Bio

Lauren Stephenson is Senior Lecturer in Film and Media & Communications at York St. John University, U.K., where she teaches across the fields of Film, Media, Literature and American Studies. Her research interests include Horror cinema (in particular, British, American and New Zealand Horror), Gender and Horror, and women’s friendship in cinema. She is the co-founder of the Cinema and Social Justice project at YSJ (@cinemajustice) and has most recently written on folk horror, the Fear Street series and its adaptations, and First Ladies in U.S. disaster movies. Follow her on Twitter at @laurenrachel11.

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

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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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Before and After? What the humanities bring to medical images

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Before and After? What the humanities bring to medical images

The Author

Graeme Heward

In this short video, Graeme Heward shares his experiences of facial surgery, and project lead Fay Bound Alberti discusses what the humanities bring to medical images.

Before and After? What the humanities bring to medical images

AboutFace cares about the experience of patients and centres them as important historical narrators in the history of medicine. While before-and-after photographs serve an important medical function in recording a physical journey, our research goes behind these images to understand patients’ journeys, including the emotional and physical journey they go through. This video features Graeme’s story, and was produced by filmmaker Barry Gibb. Graeme is a physiotherapist who sits on our Lived Experience Advisory Panel (LEAP), and who has undergone more than 30 surgeries following a diagnosis of sinonasal cancer. Below the video, Graeme reflects on his feelings when watching it back.

Please note that this video contains graphic images of facial injury. If you would prefer not to view these, you can listen to the audio file below, or read the transcript here.

“The first thing I noticed on the video was the sound of my voice.  It was a little nasally however I was articulating my words quite clearly.  Even since that video my prosthetic has been improved and we are constantly trying to improve my appearance with facial stimulation and I’m looking forward to additional magnets soon to keep my prosthetic in better apposition.

It doesn’t make me feel sad to see the video.  It shows how despite some pretty brutal surgery the body and mind does recover and offers a new beginning.  As Fay says, it is not always a smooth passage through difficult times which I’ve described previously as a rollercoaster ride. It reminds me that the prosthetic (which I love) was spawned from a nasal reconstruction disaster not the initial consideration or intent of the surgeon.  I hope that there has been some reflection of my case and that future patients might benefit from a different approach.  I’m pleased the video will be up there.  As a subject it is easier to appear on video than in person – it softens the connection and emotion.

The video shows some brutal images which demonstrate the reality of the situation.  It also shows me smiling and happy in several frames.  There are many images of different phases of facial surgery and disfigurement which help to demonstrate the journey.  It is not just me who has to acclimatise to these changes.  My partner, sons, family and friends quickly get used to my new appearances.  They say it’s still me underneath!  I think Fay describes the before and after as I feel it and my appearance and words are accurately portrayed.”

Transcript – Before and After Photographs: What the humanities bring to medical images

Graeme Heward:
My name is Graeme Heward. I’m 60 years old and I’ve been dealing with sinonasal cancer for over 10 years. I’ve had thirty-two ops, two bouts of radiotherapy, and two chemotherapy cycles, and my average op duration is 3-4 hours. I’d say that six of those ops were absolutely brutal.

Fay Bound Alberti:
Before and after images have become so commonplace in 21st century culture, whether it’s weight loss stories or environmental impact, that we don’t notice anymore that we’re being led to interpret images in this way: as an absolute change from one state to another. Behind before and after photographs of facial transformation is a messy world that often includes adjustments, pain, failures, hope, maybe acceptance. AboutFace explores the history and cultural meanings of face transplants and facial surgery, and one of the key themes that we work with is the idea of ‘before-and-after.’ We take an interdisciplinary, historically informed approach to look at what’s happening when we put together images in a particular way, including the psychological transformation that is expected to accompany a physical one in the before-and-after sequence.

Graeme:
Radiotherapy, I had twice for mopping up following tumor removal. On each session, I endured a plastic mask formed to my face and shoulders that pinned me to a solid plinth. It was horrendous and it brought me to my knees. I was referred by my ENT [ear, nose and throat] specialist to a plastic surgeon. It didn’t go well. The surgeon tried to recover the situation in a further three brutal operations. On reflection, I had a very poor, life threatening experience, with a consultant who I felt was experimenting on me.

I’ve had some crazy appearances throughout my journey. Most notable was a pedicle graft from my forehead to my nose, which resembled the shape of a penis. And the second was a flap graft, from my thigh to my face, which looked like a panty-pad stuck to my face. I’m on my third prosthetic now, in three years. Each time it is a better likeness of my former self. I feel like I’m clawing back something that had been taken away, principally by the cancer.

Fay:
Now this ordering of before-and-after, which makes complete sense from a medical perspective in showing the visible impacts of surgery, matters because it implies a journey that it is not always as straightforward as it seems. AboutFace considers the language and framing of transformative surgeries in visual images, and asks how can we connect to and explore these stories that are hidden from view? Working with people like Graeme helps us to see why it is that bringing together arts and humanities approaches, that look at the history and the ordering of medical photography, for instance, reveals new insights about the social and emotional impacts of surgery. It also helps us think about the cultural meanings of facial transformation in a more human centred way.

Graeme:
My modus operandi has always been to carry on as normal, then other people will follow suit. In ten years of facial disfigurement, I’ve had very little trouble with comments. It’s mostly staring. I’m not for adults staring, but for kids I think that it’s an opportunity to learn something new and how to behave. They’re fascinated by something different and I answer them honestly, like “where’s your eye gone?” Well, it’s a fair question! Smile and the world smiles with you. If I can laugh at myself, then other people can too.

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

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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. 

https://youtu.be/tOLaDP5UgRI

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.

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

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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.

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History has Many Faces: researching histories of facial surgery

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History has Many Faces: researching histories of facial surgery

The Author

Emily Cock

For Face Equality Week 2021, Emily Cock writes about encountering facial difference in historical documents, and the associated emotional and ethical issues.

History has Many Faces: researching histories of facial surgery

This is a post about the conditions in which I am able to research facial difference in early modern history. It is a post about the ways in which book provenance and the building of research collections tie sixteenth-century facial surgery and medicine to the more recent past, and to contemporary ethical issues faced by libraries, archives, and the people who use them. Ultimately, it is a post about the historical research and book collection of physician Ernst Alfred Seckendorf, who was born in Nuremberg on 30 December 1892, and murdered in Auschwitz concentration camp on 11 February 1943.

Dr Seckendorf occupies a small note in a spreadsheet I constructed for my book on early modern rhinoplasty. I was recently reminded of this note while listening to one of the Folger Library’s brilliant 2020-2021 Critical Race Conversations talks. The conversation was a rich discussion between Urvashi Chakravarty and Brandi K. Adams on Race and the Archive. Please do check it out soon.

Adams and Chakravarty cover a lot of ground in the session, but I was particularly struck by their notes on the role of white supremacy in constructing and regulating access to archives. The presence of Seckendorf in my notes on sixteenth-century Italian facial surgery is an illustrative point that all research collections can prove this true, and that efforts to shed light on the stories of one discriminated-against minority can be contingent on the exploitation, subjugation, or even annihilation of another.

Seckendorf and sixteenth-century facial surgery

Seckendorf was a former owner of Chicago Northwestern University’s copy of a pirated edition of Gaspare Tagliacozzi’s De curtorum chirurgia per insitionem (1597; this edition was printed in Frankfurt in 1598 as Cheirurgia nova). As I began to research the provenance of copies of Tagliacozzi’s book during my PhD, I emailed libraries around the world for information on their holdings. I regret that Northwestern’s correspondence was lost with the end of my email account for that university, so I cannot name and thank the librarian who helped me at that institution (I have learned from this mistake in my practice, and now always try to acknowledge this labour!).

In this book, the Bolognese surgeon Tagliacozzi (1545–1599) detailed how a skinflap from the arm could be used to reconstruct a nose, lip or ear. Surgeons would continue to use this skinflap technology into the twentieth century: Sir Harold Delf Gillies (1882–1960), who led the immense developments in plastic surgery in WWI, conceded that the ‘There is hardly an operation – hardly a single flap – in use to-day that has not been suggested a hundred years ago.’ Tracing copies of Tagliacozzi’s and related books helped me to explore the circulation and reception of these ideas in the intervening centuries, and thus levels of access to facial surgery techniques for people with significant facial difference from injury, illness, or other causes.

According to the city’s Wiki, Seckendorf practiced in the Bavarian town of Fürth from 1921, specialising in skin, urinary and venereal diseases. He had an interest in medical history, which extended to translation of Latin texts: his German translation of Italian physician Girolamo Fracastoro’s (c. 1476/8-1553) Syphilis sive morbus gallicus (1530) was first published in 1960. This was the first text to use ‘syphilis’ for a disease that plagued early modern Europe, accruing many pejorative and often xenophobic names. I am grateful to Sara Belingheri at the closed Wellcome Library for providing an ad hoc scan of the book’s biographical notes on Seckendorf and Fracastoro by German dermatologist and medical historian Walther Schönfeld (1888–1977). 

How research collections are formed

Last year, AboutFace hosted a workshop and published a series of posts about the emotional and ethical dimensions of researching and publishing medical images of the face. The contributors raised important issues about the invasion of the photographed person’s privacy, acknowledging and negotiating the emotional effects of these images on the researcher, and using difficult images in teaching, among other topics. But my contribution today perhaps shares the most ground with Michaela Clark’s call to heed the tactile and material when thinking about the photographs and other sources that researchers use to understand historical experiences and ideas of facial difference. In the case of Seckendorf’s copy of Tagliacozzi in an American university library, what conditions have contributed to the construction of archives and public availability of research materials? 

Seckendorf tried to leave Germany in 1937 but was denied. He is still listed in a 1937 medical directory as a “Jewish specialist for skin and venereal diseases” (in Schönfeld, 19). He was arrested in January 1938, officially for performing abortions and for attempting to marry a non-Jewish German woman. Most online portraits of Seckendorf are the photographs used by the police after his arrest, and in the Nazi media when targeting him just prior (see the news clipping on the general German Wiki). It was therefore striking to see an alternative, personal photo used on the Fürth Wiki page. These photographs are, after all, a new archive through which the public understanding of Seckendorf is to be built up, and the choice of image a very deliberate and consequential move. 

There are provenance notes inside the copy of De curtorum chirurgia that can be used to trace some of its sale history. At one point, publisher J.F. Lehmann sold the book in Munich. Someone purchased the book from the still-extant Munich Karl & Faber auction house in 1932. One of these purchases, or possibly even the selling of the book, might have been by Seckendorf. I do not know the circumstances behind Northwestern University Library’s acquisition of this book. Perhaps the prominence of Seckendorf’s bookplate at least indicates a disinterest in denying or destroying the book’s provenance by whoever sold it to the library.

But millions of books were stolen from Jewish owners, including on Jewish topics, with restitution a slow process that receives less attention and funding than for more glamourous objects like priceless art. Schönfeld says that Seckendorf had an extensive (‘umfangreiche’) library of medical literature and history. Further research by people more skilled in twentieth-century German book history than myself will be required to establish the full circumstances of his collection’s dispersal. 

Provenance as ethical practice

I do not know enough about Seckendorf’s practice to explain the specific information he might have gleaned from De curtorum chirurgia, but it intersected with his specialisations in the skin and venereal diseases, since destruction of the nose was strongly associated with syphilis. He published a number of articles on medical history and on current practice. I argue in my book that some surgeons in controversial fields like plastic surgery used history and bibliography to defend their practice: operations to reshape the nose, for example, were not just products of ‘modern’ vanity, but had histories of development to help men injured in wars, duels, and other honourable, masculine pursuits. Perhaps Seckendorf saw similar value in contributing to the historical understanding of venereal and skin diseases.

Tracing books by previous owner is a difficult process: provenance information is often held in libraries’ private or less-searchable catalogue metadata, assuming that they have had any budget to research and catalogue this information to begin with. Nevertheless, I hope that it is only a matter of time before Seckendorf’s library can be reconstructed, if only as a digital catalogue, and his contributions to medical history better appreciated.

In the meantime, Seckendorf’s copy of De curtorum chirurgia, and Adams and Chakravarty’s discussion, remind us of the many historical figures, structures and processes entwined around the research materials that we can sometimes take for granted.

Author Bio

Emily Cock is a Lecturer in Early Modern History at Cardiff University, and author of Rhinoplasty and the nose in early modern British medicine and culture (Manchester University Press, 2019). Emily’s research explores early modern social and cultural histories of medicine, sexuality, and disability.

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