Interface

Visible Facial Difference

The face race

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The face race

The Author

Fay Bound-Alberti

Blog originally posted at the Net Gains site.

In our latest piece for Net Gains? Professor Fay Bound-Alberti discusses how the technological face race is one example of how an interdisciplinary approach is crucial to understanding the future of technological advancements in medicine.

The face race

In 2005, Amiens – France, the first face transplant in the world took place. The recipient was a 38-year woman, Isabelle Dinoire, whose face had been mauled by her pet Labrador while she was unconscious. There had been discussion since the 1980s of the potential of a face transplant one day, though France was a surprise forerunner. It was Peter Butler’s team at the Royal Free in London that was popularly, at least in the British media, expected to be first past the post; to win the face race. That very language – of medical firsts – is important, because all technological innovation involves the desire to improve, to enhance, to create, to push current practice in the presumed spirit of ‘progress’ forward in leaps and bounds, rather than inches. For the winners there is kudos and often riches – prestigious research grants, professional reputations. Along the way, however, there are failures, and risks.

In medical contexts, technological innovation is especially fraught, for the risks that are involved involve human subjects – especially those who are in a fragile emotional or physical state, sometimes on the brink of death. Each of us wants our medical professional, especially surgeons, to be enormously skilled and experienced in the procedure that we need – to have undertaken ‘more transplants than you’ve had hot dinners’ as one cardiac specialist said to me. But someone must be first to receive a new procedure, as well as the first to undertake it. The history of medicine is littered with so-called ‘guinea pigs’ on whom technological interventions have been tested, and not always successfully. The cardiac surgeon Christiaan Barnard made it to the cover of TIME magazine for his first successful heart transplant in 1967 but his patient – Louis Washkansky – lived only 18 days.

Face transplants, like hand transplants, are undertaken to enhance rather than save lives – though ‘Quality of Life’ is a much-debated concept. It is often possible to reconstruct faces using an individual’s own tissue, or to involve advanced prosthetics, just as technological innovation is increasingly able to emulate the touch and functions of a human hand. So why choose a face transplant?

Face transplants are a functional and aesthetic choice; reconstructed faces can have a taut and patchwork appearance, with burn patients needing multiple, ongoing operations. The complex skin and nerves around the mouth cannot be reconstructed by traditional means. In medical terms, face transplants are rare and risky procedures – even more than hand transplants; there have been fewer than 50 around the world since Isabelle Dinoire’s pathbreaking operation. There are many reasons for this: a lack of donors (few people want to give away the faces of their loved ones); a limited number of multidisciplinary teams with the skills to undertake the procedure; prohibitive costs – and in countries like the US no third-party insurance coverage – and the risks of taking immunosuppressants. Ten of those people who received face transplants have died of complications relating to the procedure, of cancer (like Isabelle Dinoire, who died at just 49), or by suicide. Two people have received re-transplants when their faces failed.

The future of face transplants is uncertain, especially as the large experimental grants given by the US Department of Defense are running out. New technologies are being adapted and developed to take their place, with tissue engineering being held up as the future promise for patients. Tissue engineering is a branch of Regenerative Medicine that combines stem cells and biomaterial scaffolds to restore organs after injury or disease. Emerging technologies relevant to face and hand transplants include 3D bioprinting, bio fabrication, pluripotent stem cells that are capable of self-renewing, and developing into the three kinds of cells that make up the human body. At present, tissue engineering plays a relatively small role in patient treatment and the procedures are still experimental and costly. These new technologies also come with their own controversies – around animal experimentation, human tissue use, informed consent, scientific integrity, and societal impact. The history of medicine informs us that ethics all too often fall by the wayside once a procedure moves from the bench to the bedside.

The Arts and Humanities play a critical role in helping navigate the complex questions of risk and ethics, of quality of life and the value of human experience. In the case of face transplants, qualitative research is critical to help surgeons evaluate patient outcomes. The experience of drinking through a straw might be a clinically measurable way of determining the success of a transplanted face. How it feels to kiss a loved one with the mouth of another, or to be kissed by that mouth, is not. But it isintegral to the human experience of facial transplantation, as explored by my Interface project, which is funded by a UKRI Future Leaders Fellowship and uses interdisciplinary methodologies to understand the emotional impacts and ethics of surgical experimentation. Interface explores themes relevant to a wide range of technological interventions: from facial recognition systems to deepfakes; from identity politics to cosmetic surgery, from 3D printing to transplanted faces. Such interventions tend to reflect rather than subvert traditional ideas about race, gender, ethnicity, and ability. How we live well with technologies of the face is a pressing ethical and social question. 

The Interface project is housed in the Department of History at King’s within the Faculty of Arts and Humanities. The project is affiliated to the Centre for Technology and the Body, directed by Professor Fay Bound-Alberti ,as part of the Digital Futures Institute.

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Disfigured Faces, “Accursed Ugliness”, and Hollywood

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disfigured

Disfigured Faces, “Accursed Ugliness”, and Hollywood

The Author

Patrick Adamson

disfigured

The fourth and final blog in our Halloween series, written by Paddy Adamson, brings together the key themes of Hollywood and disfigured faces. As a researcher in film, and a member of Face Equality International’s Lived Experience Group, Paddy brings a unique perspective to the topic. Don’t miss the rest of the series, starting with Fay Bound Alberti’s introduction, Sara Wasson’s blog on Les yeux sans visage and Lauren Stephenson’s analysis of The Eye. Let us know what you think!

Disfigured Faces, “Accursed Ugliness”, and Hollywood

One of the best-known scenes in all of silent cinema unfolds about halfway through Rupert Julian’s The Phantom of the Opera (1925). Young soprano Christine Daaé (Mary Philbin) has been carried down into a suite prepared for her in the cellars under the Paris Opera House by the Phantom (Lon Chaney), a mysterious masked composer who haunts the venue. He promises her a great career, providing she can devote herself to following his orders.

But curiosity about what lies beneath her mentor’s disguise gets the better of her. Stealing up behind him as he plays “Don Juan Triumphant” at his organ, peering over his shoulder as he faces the camera, she snatches the Phantom’s mask away, revealing directly to the audience a cadaverous face of sunken cheeks, protruding teeth, and flared, elongated nostrils. When he turns to look at her, intrigue gives way to screams; the film cuts between the Phantom’s true face and the terror and disgust it inspires in hers.

Said to have led to screaming and even fainting among moviegoers of the day, the Phantom’s unmasking is a shocking spectacle of physical difference and an iconic moment in horror film history – the unveiling of a face that has continued to fascinate in the near-century since. Created by Chaney himself, an actor famed for his extreme transformations, the villain’s look was kept secret until release. Today, his elaborate make-up can be imitated for the price of a high-end Halloween mask.

“Feast your eyes”

Yet, for all that the Phantom’s command as he forcibly turns the cowering Christine’s face toward his – “Feast your eyes – – glut your soul on my accursed ugliness!” – could equally be directed at the film’s audience. There is more to the scene than the thrill of seeing Chaney’s make-up artistry paraded on screen. It provides a revelation vital to the story. Confirmed by the disclosure of his deformed face is the Phantom’s monstrous true nature. The corrupted body of this gruesome physical spectacle befits the corrupted soul of this dangerously deranged outcast from Devil’s Island, his disfigurement the outward expression of the ugliness within.

Film still from The Phantom of the Opera (1925)

For me, as a disfigured viewer, this is the most striking aspect of this iconic moment. Not only is it testament to the longevity and pervasiveness of an all too familiar tendency, unavoidable at this time of year – the imitation of appearance-altering conditions in the name of a “spooky” costume – but it is an uncomfortable reminder of what it means, in the codified world of Hollywood cinema at least, to be facially different.

Physical Appearance as Cinematic Shorthand

Filmmakers have long exploited the meaning-making potential of distinctive physical characteristics, using non-normative appearances as an expedient shorthand for character. The most notorious example of this physiognomic logic is the prevalence of facial scarring among movie villains. Examples range from the monstrous of horror cinema – the burn-scarred Freddy Kreuger foremost among them – to the crime lords and Sith Lords of the latest James Bond and Star Wars blockbusters. Visible evidence of a past gone awry, stated or otherwise, their scars offer a convenient rationale for the malevolent course they now follow.

At the same time, there can be little doubt that the appeal of figures from the Phantom to Kreuger owes also to a fascination with such bodies and the uncomfortable feelings they are supposed to excite. They are the frightful icons behind many a Halloween costume, after all, evidence of a pleasure found in the display or performance of physical difference that can be traced back through the history of film and the freak show. Chaney made something of a career of it, earning the nickname “The Man of a Thousand Faces” for the lengths he went to: strapping his lower legs to his thighs to play a double amputee in The Penalty (1920); labouring under a skin-tight rubber suit and seventy-pound hump as Quasimodo in The Hunchback of Notre Dame (1923); and apparently combining his famed make-up skills with painful wire hooks to create his iconic Phantom.

LOn Chaney

The Man Who Laughs

Paul Leni’s The Man Who Laughs (1928) typifies this marriage of exploitation and empathy, using the non-normative appearance of its protagonist to directly interrogate conventional ideas about the face and the role it plays in how we understand ourselves and others. Originally planned as a Chaney vehicle, this adaptation of Victor Hugo’s novel stars Conrad Veidt as Gwynplaine, a travelling show attraction famous for his wide frozen grin, carved into his face as a child by a Comprachico surgeon under orders from the King of England.

While his condition does not, in theory, preclude his entry into the spaces and pursuits enjoyed by the masses, Gwynplaine’s world is circumscribed by his facial difference. Most welcome on society’s edges, in carnivals and freak shows where difference is a valued commodity, he internalises the daily ridicule and the aesthetic and moral judgements of a callous, grotesquely prejudiced, yet superficially “normal” public; he fears he is unworthy of the woman he loves, Dea (again played by Philbin), for her blindness prevents her perceiving the real him.

To portray a man who can only laugh, Veidt’s wide grin was held in place using a bespoke, and apparently painful, appliance that deprived him of access to normative facial expressions, along with the social cues associated with them. Where the face is conventionally seen as inseparable from selfhood, the foremost means by which we recognise each other, Gwynplaine’s face not only fails to reflect his inner self but seems to contradict it, thanks to the fixity of its lower half; when not covering his mouth via a protective gesture of sorts, he is seen to grin his way through incidents to which such a reaction rarely seems appropriate. His character divorced from his appearance to jarring ends, the result invites audiences to search for an understanding of his agony in his eyes and comportment, and, in the process, perhaps reflect on their assumptions about how a face should react and look.

A Damaging Reliance on Disfigurement

And yet, for all the nuance, or at least ambivalence, that The Man Who Laughs brings to its handling of disfigurement – being, at once, indebted to and critical of the exploitation of facial difference – the film’s enduring place in the popular consciousness again owes overwhelmingly to the unusual look of its protagonist. In 1940, a photograph of Veidt in make-up as Gwynplaine was used by DC Comics artists as a model for a new villain: the Joker – flamboyant nemesis to the noble, honourable Batman.

A staple Halloween costume today, the Joker has gone through numerous incarnations in the intervening eight decades, with the extent and cause of his scarring and famous malevolent grin being repeatedly reimagined. The latest, in 2022’s The Batman, finds him with full-body scarring and a permanent smile attributed to a congenital condition. Director Matt Reeves explains, “…he’s had this very dark reaction to it, and he’s had to spend a life of people looking at him in a certain way…and this is his response.”

Nearly a century on from the unmasking of Chaney’s Phantom, and in a world where media images are routinely decried as a source of body dissatisfaction, Reeves’s comments illustrate the extent to which popular cinema’s damaging reliance on disfigurement as a visible expression of inner corruption or evil continues to go unexamined in many circles. Moreover, they speak to the unique challenges faced by the facial difference community and how these extend beyond the cosmetic and the medical, beyond even the more overt forms of discrimination and abuse to which many of us have grown up accustomed.

Everyday Prejudice

Yet, for all that characters with facial differences are disproportionately given (often lurid) backstories involving some kind of “dark reaction” to what is treated as an inevitable social stigma, the toll such everyday prejudice can have on the life experiences and mental health of those affected by it has rarely been addressed via bespoke legal protections or support. Recent years have, it should be highlighted, seen some more promising signs on this front: the British Film Institute’s 2018 commitment “to stop funding films in which negative characteristics are depicted through scars or facial difference”, and the ongoing efforts of Face Equality International, a global alliance of NGOs working around disfigurement, advocating the overdue recognition of facial difference as a human rights issue in its own right. These are significant steps and, in their being so, reminders of how much remains to be done.

Author Bio

Patrick Adamson is an editor and independent film researcher who lectured at the University of St Andrews from 2021 until 2022, having received his PhD from there in 2020. Specialising in silent Westerns, early popular historical filmmaking, and universalist discourses in 1920s Hollywood, he has been published in journals including Film History and received awards for his research from BAFTSS (British Association of Film, Television and Screen Studies) and SERCIA (Société pour l’Enseignement et la Recherche du Cinéma Anglophone).

He is a member of the Face Equality International Lived Experience Working Group.

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Transplantation narratives on screen: a Halloween blog series

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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.

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Artificial Intelligence and Facial Discrimination

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AI

Artificial Intelligence and Facial Discrimination

The Author

Phyllida Swift

Phyllida Swift

This blog on artificial intelligence and facial discrimination is the fourth and final installment of our series on facial recognition. Don’t miss our first blog by AboutFace PI Fay Bound Alberti, about what history can teach us about technological innovation, our second by guest author Dr Sharrona Pearl, on human facial recognition, face blindness and super-recognisers, or our third by George King at the Ada Lovelace Institute, on regulating facial recognition technologies.

Artificial Intelligence and Facial Discrimination

Over the past couple of years, here at Face Equality International we have experienced increasing numbers of requests from academics, policymakers, government bodies and businesses to input into commentary and research on artificial intelligence, and in particular ethical considerations around the effect of AI technologies on the facial difference community. The most obvious technology of concern is facial recognition and its potential for bias, exclusion and censorship. All of which are issues with a growing evidence base, but with little progress or acknowledgement of such evidence from technology companies, regulators, or businesses adopting AI into their practice.

At Face Equality International (FEI), we campaign as an Alliance of global organisations to end the discrimination and indignity experienced by people with facial disfigurements (FD) around the globe. We do this by positioning face equality as a social justice issue, rather than simply a health issue, which is all too often the case.

For any equality organisation, the public dialogue on how AI has been proven to replicate and reinforce human bias against marginalised groups is deeply concerning. Granted, it’s reassuring to see increased recognition in society, but this is not without great fear from social justice movements that generations of advancements could relapse at the hands of unregulated AI.

Because as it stands, AI is currently unregulated. A regulatory framework is in development for Europe, but ‘the second half of 2024 is the earliest time the regulation could become applicable to operators with the standards ready and the first conformity assessments carried out.’

Back in March, I was invited to share a statement at an event attached to the United Human Rights Council led by Gerard Quinn, the UN Special Rapporteur on the Rights of Persons with Disabilities. This came off the back of a thematic report into the impact of AI on the disabled community. The themes in this blog will follow similar lines as the statement, in less formal terms.

AI and the disabled community

It’s unsurprising that the most apparent AI-related threat that is relevant to us is facial recognition software. For an already marginalised and mistreated community, AI poses the threat of further degrading treatment. For instance, we already see constant abuse and hate speech on social media, where people with facial differences are referred to as ‘sub-human’, ‘monster’, or ‘that thing’. But algorithms often fail to pick up on such slurs as being derogatory to the facial difference (FD) community, which should fall into the protected group under disability policies.

Social media also poses the problem of censorship through AI, where on several occasions we have seen photos of people with disfigurements blurred out and marked as ‘sensitive’, ‘violent’, ‘graphic’ content. When reported, platforms and their human moderators are still failing to remove these warnings.

There is growing evidence to demonstrate the extent of harms caused by AI software in disadvantaging certain groups. Such as when Google Photos grouped a photo series of black people into a folder titled, ‘gorillas’. We know that several FD community members have reported having their photos blurred out and marked as sensitive, graphic or violent on social media, effectively censoring the facial difference community and inhibiting their freedom of expression to post photos of their faces online.

We know from research that many people make assumptions about someone’s character and ability based on the way they look. A study in America from Rankin and Borah found that photos of people with disfigurements were rated as significantly ‘less honest, less employable, less intelligent, less trustworthy’, the list goes on – when compared to photos where the disfigurement was removed.

Facial_Difference

AI, Dehumanisation, and Negative Bias

Sadly, we’re seeing these assumptions play out in AI led hiring practices too, where language choice, facial expression, even clothing have been shown to disadvantage candidates, whose scores are affected negatively. In a notorious Amazon example, a machine had taught itself to search for candidates using particular word choices to describe themselves and their activities, which ended up favouring male candidates who more commonly used those words. How can we expect someone with facial palsy, for example, to pass tests based on ‘positive’ facial expressions.

We have heard several cases of passport gates failing to work for people with facial disfigurements, and the same goes for applying for passports and ID online. Essentially, this is because the various software tests required to submit photos are not recognising people’s faces as human faces when they are put through. For an already all too often dehumanised community, this is simply not good enough.

Non-recognition of people with disfigurements was recorded by World Bank when it was found that someone with Down’s Syndrome was denied a photo ID card as the technology failed to recognise his non-standard face as a face. This was also apparent for people with Albinism.

There are often alternative routes to verify identity outside of facial recognition, for instance when problems arise with smartphone apps which rely on facial recognition to access bank accounts or similar services. Systems which ask the user to perform an action – such as blinking – can cause difficulties for people with some conditions, such as Moebius Syndrome or scarring. Some apps offer an alternative route for people unable to use the automatic system, but this goes against the principle of inclusive design and may be more cumbersome for people with facial differences. As is often talked about in disability spaces, the additional admin required of someone with a disability or disfigurement can take an emotional toll. Self-advocacy of this kind can be a life-long occupation.

Ethical AI?

So the problem for us is not necessarily in proving that there is a glitch in the system, it lies in making ourselves known to the technological gatekeepers. Those with the power to turn the tide on this ever-evolving issue. Whilst building coalitions with fellow organisations pushing for ethical AI, such as Disability Ethical? AI.

Princeton University Computer Science professor, Olga Russakovsky, said, “A.I. researchers are primarily people who are male, who come from certain racial demographics, who grew up in high socioeconomic areas, primarily people without disabilities.” “We’re a fairly homogeneous population, so it’s a challenge to think broadly about world issues.”

What’s interesting to note is that when we have asked our communities to relay to us their potential concerns about the growing use of AI, across every aspect of society, through polls and forms promoted across social media and via our membership, the response has been rather limited. There is often a consistent dialogue between us and our online communities when discussing issues that affect the FD community, but it appears that when it comes to AI, there has been far less of a response.

A ‘Transparency Void’

After further investigation, our team believes this could be for a number of reasons. Firstly, AI is too broad a technological term that conjures up distant, futuristic notions of robots driving our cars and taking over the planet. Which is very much what I thought of when this topic first landed on my own desk.
The second potential reason could be what we’ve started to refer to in our commentary on the issue as a ‘transparency void’. Meaning that it is far less obvious when a machine is creating barriers, bias or discriminating against an individual on the grounds that they are facially diverse, than it is if it were to be a human giving away cues in their language, their eye contact and their behaviours. In a recent Advisory Council meeting, a member spoke of the frustrations of trying to navigate automated phone lines with set questions, when your facial difference also affects speech. How does one get through to an actual human when there is no option to pass certain automated tests?

AI discrimination will continue to place the burden on the victim of the discrimination to challenge the decision, rather than on the (often well-resourced) entity using the technology. Existing research shows that the number of cases brought in relation to breaches of employment law legislation is just a tiny fraction of those which occur, so this is not an effective enforcement mechanism.

A Rapidly Escalating Issue

This is perhaps the most insidious threat regarding the negative impact of AI on furthering the face equality movement. Who do we hold accountable when AI discriminates based on facial appearance? Because we know for sure that it is already happening, as therein lies another fear for us at FEI, in that many members of the FD community will already be experiencing disadvantages at the hands of AI, without realising it, or without comprehension for how quickly this issue is escalating, with the use of AI in recruitment, security, identification, policing, assessing insurance, financial assessments and across our online spaces. These are not emerging technologies, AI is already here with us in force, and it’s growing exponentially.

It seems the crux of the issue lies in narrow data sets. In simple terms, the faces that AI is used to seeing are only certain types of faces. ‘Normative’, non-diverse, non-facially different faces that is.
We at FEI want to get to the source of the problem, and prevent further damage. It is our understanding, as a social justice organisation, as opposed to a tech company, that the best way to do this is to lend ourselves to the meaningful, robust and ethical consultation and involvement of our community. Whether it’s a question of us supporting companies to widen the pool of faces to diversify their date sets, or us continuing to feed into research and policy consultation, we are committed to making our cause, and the people we aim to serve known to the companies that so often ignore them.

Author Bio

Phyllida Swift

Phyllida is CEO at Face Equality International. Phyllida was involved in a car accident in Ghana in 2015 and sustaining facial scarring. After which, she set out to reshape the narrative around scars and facial differences in the public eye, to champion positive, holistic representation that didn’t sensationalise, or other the facial difference community any further. She started out by sharing her story as a media volunteer for Changing Faces, before taking on a role as Campaigns Officer, and later Manager. During that time, she led the award winning, Home Office funded disfigurement hate crime campaign, along with working on multiple Face Equality Days, ‘Portrait Positive’ and ‘I Am Not Your Villain’. She shared her own experiences of how societal attitudes and poor media representation impacted upon being a young woman with facial scarring in her TEDX talk in 2018. Phyllida sits on the AboutFace Lived Experience Advisory Panel (LEAP).

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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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Owning My Face

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Owning My Face

The Author

Marc Crank

This guest blog by Marc Crank responds to the Changing Faces campaign ‘#YouAreNotAlone,’ and explores Marc’s own experiences of living with a facial difference.

Owning My Face

Reading about the current Changing Faces You are not Alone campaign, which tackles the subject of men with visible differences struggling to talk about their appearance, made me reflect on my own journey as a man whose appearance is certainly very different.

From the age of three or four I have had a very visible facial disfigurement caused by a tumorous condition. I am exceptionally lucky; I have a talented and incredibly loving mother who was determined that I should have as normal a life as possible. This formed the foundation of my relationship with my looks.

‘Our normal’

Protected by the loving support of my mother and doting grandparents I started life knowing that I looked different but being blithely unaware of why that should stop me from achieving what I wanted. Encouraged to develop interests and experience all that life had to offer; I am fortunate to have had a very happy childhood. We only have one infancy so, to a large extent, whatever we experience is ‘our normal’.

Long periods in hospital and many operations was my childhood normal, it’s not the pain and stress of hospital that I remember but the days out, playing in the snow and the excitement of exploring new places and things. However happy childhood might be, adolescence comes. By my teens I was a bright and confident chap in many ways but with a growing sense of the disparity between how I saw myself and how other people saw me.

For me, how I looked was my normal, I didn’t spend much time thinking about how different that was from other teens. It’s a difficult time for everybody as they strive to develop their identity and individuality, very often by trying to look like everyone else. Choosing to adopt the same fashionable haircut as their peers or wearing the uniform that identifies them with a chosen music or culture genre. Having a facial difference makes that pursuit of an identity more difficult, particularly when some are only prepared to identify you by your disfigurement.

Avoidance

Avoidance became a way for me to deal with my appearance in my mid-teens, I would try to ensure that I didn’t draw attention to my facial difference. My embarrassment in an English class remains a vivid memory, as I awaited my turn to read aloud a passage that included a reference to scanning a page with both eyes; I don’t have two eyes and was sure that someone would point this out in front of my peers.

That was when I realised that I was actively avoiding anything that might lead to having to talk about the detail, reality or my feelings about my appearance. The all-too-frequent direct question “what happened to your face?” made total avoidance impossible, fielding intrusive questions however, is not the same as choosing to talk about one’s appearance. Even answering questions, I found myself effectively choosing evasive tactics by using quick and often untrue statements about it being a car accident or glib humour such as “I cut myself shaving”.

This avoidance of owning the cause and reality my disfigurement led me to a kind of epiphany. I noticed how much more comfortable people were if they could attribute my difference to something that they could understand, such as an accident. The easiest times for me were always during convalescence following surgery when I was often bandaged thus looking very much like the victim of some mishap.

Interactions

People generally weren’t disturbed by how I looked but rather by a fear of the unknown. People also seemed to be reassured in their own mind that I obviously looked like everyone else before and that somehow accidents could always be repaired, “The doctors will fix you up.”

This led me to be much more comfortable with and open about my appearance and why I looked different. By my late teens I would often seek to address the elephant in the room because dealing with that fear of the unknown made everyone more comfortable and hence normal interaction easier.

There are far more interesting things to talk about than my appearance but I’m no longer embarrassed or reluctant to discuss it; it’s part of who I am. It’s also a useful tool in trying to address the prejudice and inequality that exists today for all people with a visible difference, a passion I have had for thirty years.

#YouAreNotAlone

Being comfortable talking about your appearance does not mean that you should not have boundaries; I choose how much, when and with whom I share any detail about my appearance or how it makes me feel. Sometimes that choice can be taken away from you. Perhaps two of the most common albeit polar reactions people can have when meeting someone with a visible difference is to avoid any reference to the person’s difference or feel compelled to say something, anything to acknowledge it, both can be equally awkward but neither are intentionally offensive and both can be resolved allowing positive interaction.   I take great exception to those people that try to demonstrate how comfortable they are with me looking different by constantly making references to my disfigurement. Even worse are those that make jokes about how I look to show ‘how okay they are with it’! Looking different can create unique experiences that are really amusing, these experiences are something that I can laugh about with friends that genuinely are ok with it.

Author Bio

Marc Crank is a third Sector leadership and management consultant. He has been campaigning for more than thirty years as a disability and equality rights activist and also has twenty years’ experience as a regional and national charity CEO, specialising in disability/health advice, support and advocacy. Committed to multi-agency, cross-sector collaboration, Marc won an award in 2007 for his contribution to cross-sector partnership development across Staffordshire. Passionate about equality and empowerment of marginalised groups Marc combines lived experience with the skills and knowledge gained from his varied work and voluntary roles.Marc sits on the LEAP (Lived Experience Advisory Panel) for Interface.

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