Interface

Visible Facial Difference

Moebius Syndrome and Face Equality

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Moebius Syndrome and Face Equality

The Author

Patrick Adamson

Our next Face Equality Week blog is on Moebius Syndrome and face equality. It is written by Jonathan Cole, a professor at the University of Bournemouth and a consultant in clinical neurophysiology at Poole Hospital. In addition to empirical neuroscience research he believes the first person experience of impairment is essential. In this regard he has written several books, on living with severe sensory loss, with spinal cord injury and with facial disfigurement. His account of Moebius Syndrome, (The Invisible Smile, OUP), was written with Henrietta Spalding, who has the condition herself.

Moebius Syndrome and Face Equality

One of the most extraordinary things about our species is that our faces all look different, (barring identical twins); the face is a unique identifier. Whilst we accept differences within certain constraints, and indeed celebrate them, if people have differences beyond the norm or the accepted, then terms such as disfigurement appear, and people can be stigmatised. (Disfigurement being the preferred term amongst many with such visible differences). The purpose of those of us working in this area is to reduce such stigma, and to value different people and their faces, hence facial equality.

Our faces have evolved not solely to look different, but are less hairy and more mobile than other primates, to be more visible and to reflect and express our more complex emotional experience. Facial expression is so much a given, so taken for granted, that we have tended not to focus on it as an important aspect of being human, compared say with language, cognition or ever the opposable thumb. Yet it can be the cause for judgements just as damning and ill-considered as those seen in disfigurement. Some with Parkinson’s find facial mobility is reduced and can be considered to have become ‘dull and boring.’ There is, however, at least one condition in which facial mobility is absent from birth and whose experiences allow insights into facial expression which might otherwise be unobtainable and indeed unimaginable.

In Moebius Sequence or Syndrome the nerves controlling movement of the eyes outwards and of movement of the muscles of facial expression do not develop, so from birth children with the condition cannot suck, or close their mouths or their eyes. Other more variable features may include other problems with cranial nerve function leading to difficulties in movement of the tongue and swallowing, as well as abnormalities in development of the hands and feet.

Initial care may focus on feeding and then, later, on eye care and dentition. People with Moebius may require surgery to their eye lids, to their feet and hands as well as needing speech and language therapy to learn to talk without lip movement. Some are astonishingly good at this. The everyday practicalities of living without lip or eye movement, as well as many other difficulties are life-long. One person with Moebius described their body as like a ‘rusty old car,’ needing continuing medical attention.

As well as these physical difficulties, people with Moebius also have to face psychosocial problems, some arising from their condition but others imposed by others. An example of the latter is that in the past children with Moebius were thought to have an increased incidence of autism and of learning difficulties. More recent research has not confirmed this. Instead it is suggested that children with Moebius, without facial expression and frequently with eye problems and gaze palsies, as well as with difficulties in speech, have been considered autistic – the judgement of which depends, in turn, to an extent on mutual eye gaze and social success – because of their physical limitations, a sort of somatic straight-jacket. Likewise, learning difficulties faded away once people with Moebius, who unsurprisingly can have learning delays, were allowed sufficient time to perform the tests and see the questions, and properly aged and development matched. Even medical professionals have, in the past, seen physical differences and presumed illusory intellectual deficits.

Moebius is rare, so few health care professionals will meet a case. Because of this, mutual support across the community becomes more important. Organisations such as the US Moebius Support Foundation facilitate support and knowledge between and with differing age groups. Many with Moebius thrive socially, especially with good family and friends’ support, just like the rest of us. But, like the rest of us too, some do find social interaction problematic and increased rates of depression and reduced educational and work success have been reported. Children with Moebius and their parents seeking advice and support are often at the forefront of concerns, but then those children grow up. While some ages are always difficult, say adolescence, for people with Moebius, early adulthood, watching friends start families when they might not be, can be additionally problematic. When considering facial equality, age related phases of life should not be forgotten.

Some with Moebius, again like the rest of us, develop excellent social skills but a few can find these difficult. A few also describe a childhood with impoverished emotional expression and indeed experience, possibly as a consequence of reduced bodily expression and social reinforcement. It is important to introduce emotional and social experience, by encouraging talking about feelings and by the increased use of gesture and prosody.

Conversing with people with Moebius, one soon learns to tune into conversation without facial expression, with nuances of meaning revealed elsewhere. One person told me of taking her wedding photos into work. Someone said, ‘But you are not smiling.’ Despite working with her for years, they had not realised she lacked a visible facial smile, so successful was she in conveying emotion through other channels.

When considering face equality one might, naturally, focus on appearance, and disfigurement. But those with Moebius and, say, with Bell’s palsy have reduced or asymmetrical movement of the face, while others, such as with Blepharospasm and torticollis, have unwanted movement. Faces have both a static appearance and have evolved to be dynamic reflections and read-outs of emotion. Face equality is about both appearance, and expression and movement. An increased appreciation of the diversity in faces is not only a humane imperative, we can all learn much from those who live with conditions which question our normal assumptions about faces.

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Daring to be Different

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Daring to be Different

The Author

Amanda Bates

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!

Daring to be Different

Dr Amanda Bates, CPsychol, is a Patient Experience and Public Involvement Lead in the Centre for Health Services Studies at the University of Kent. She brings health researchers and service users together to enable patient involvement in the design and management of research using best practice principles of Patient and Public Involvement (PPI). Aside from these roles, Amanda conducts freelance training in disability equality, resilience and living with difference. As someone with a facial difference from birth, Amanda is also involved with the charities Changing Faces, The Cleft Lip and Palate Association (CLAPA) and Face Equality International and has carried out media work on behalf of all three organisations. Amanda sits on our Lived Experience Advisory Panel (LEAP).

Daring to be Different

Despite numerous surgeries in my childhood and teenage years owing to a cleft lip and palate (and other differences), staring strangers and intrusive questions, I rarely spoke about my appearance and what it meant to me. Although I was okay with my reflection, I had put my appearance–my face–and therefore a significant part of who I was-in a box and locked the lid so tightly that opening it seemed an impossibility.

How I relate to my appearance has changed over time (flipped 180 degrees actually) but eventually I found my voice as a self-advocate, grew into my own skin and ultimately learned to like who I was, as a whole person.

As a child/teenager, I was seen as someone who generally coped well, was sociable and ‘lived’ life. It was presumed I’d accepted my difference. Far from it I’m afraid; it wasn’t until my early 20s that I started grappling with the issues.

Why did I separate my appearance from myself and my identity for so long? Well, difference was a taboo subject in my family. My Mum and I were busy protecting each other by not discussing it and my Dad founded the British stiff upper lip society. Therefore, I assumed people didn’t want me to talk about it as it was difficult for them.

Growing up, difference scared me as I assumed it was always a bleak, woeful experience, something to be avoided and certainly to never identify with. Multiple signs reinforced this; being bullied, rarely mixing with anyone who was different, media stereotypes, never seeing disabled people on television…the list goes on. When at times I was forced to face my difference (usually via bravery awards – well-meant but utterly mortifying) or by people telling me they would ‘throw themselves off a cliff’ if they were me, I saw it as a reluctant, unwanted challenge and would shake it off pronto.

A traumatic thread running through everything was surgery. Healthcare culture is mostly different now but growing up I had no say and felt I was on a treatment conveyor belt whereby surgeons were determined to ‘correct’ my appearance, regardless of my feelings. The many required ‘corrections’ surely meant my difference was far from desirable? Given everything, it’s unsurprising that to cope, I locked my face away so it was a separate entity to my being; I had no reason to see it positively, to embrace it as part of my identity, why would I?

The catalyst for change happened when pursuing a health psychology qualification. I deliberately chose a course that incorporated the topic of visible difference so at some level of consciousness I must have wanted to explore these issues, albeit in a ‘removed’ way via academia. Rather inevitably however, when suddenly immersed in a culture where it was acceptable and encouraged to talk and write about visible difference, I was no longer able to hide from myself. My ensuing emotional reactions were immensely powerful and cut deep. Letting go of the well-rehearsed, protective mechanism of projecting myself as someone who wasn’t different in any way, shape or form, was, for a time, catastrophic.

I felt isolated and on display, terrified I would be asked to talk about appearance issues. I started counting the number of times I was stared at. My difference, although always evident to others, was newly noticeable to me and I started to reflect upon my family and hospital experiences. A fuse had been furiously lit within me and I knew my perception of myself and my past was changing; I was powerless to stop it. I realised I couldn’t continue to separate myself from my difference–it was a significant part of my identity. I reached out for support from friends, family and professionals who all answered the call.

With time and support, I realised I wasn’t born knowing how to cope with looking different. None of us arrive with a handbook (if only!) and much less support was available when I was growing up compared to nowadays. I just lived my life; I didn’t question how and why I did things a certain way.

Talking with others gave me permission to explore my difference and related issues in a way that I hadn’t ever done. I gave myself permission to talk and to feel, too. In time, my experiences at last felt validated and understood. I started working for a disability rights organisation and volunteering for visible difference charities; these strands further enabled me to grow into my own skin, find my voice and explore societal views about difference.

Facing my past and processing all that had happened allowed me to embed my appearance and related experiences into my identity. It was a lengthy and difficult process, but a liberating, rewarding and ultimately empowering one. I stopped counting the number of times I was stared at and went on to deliver disability equality workshops and take part in media interviews about appearance diversity. Quite a journey…

How anyone deals with their difference is of course a personal issue and no-one should be forced to feel a certain way about it. I just chose a path that was ultimately right for me.

Difference is perfectly normal and should be respected as such. Not hidden, not dehumanised, not infantilised. Societal perceptions and images around difference have started to change, but there is still some way to go to achieve Face Equality. We all have a role to play to facilitate positive changes so people living with difference don’t feel they have to hide either all, or part of themselves, away.

Have open and honest conversations with friends and family about difference, embrace the normality of it. Start early, talk with children about it. Don’t cross the road or sweep the issues under the carpet, making difference awkward and shameful. Treat others as you would wish to be treated. Respect and value difference.

That’s enough from me, so over to you…what will you do to help bring about Face Equality?

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The challenges of living with an unusual appearance: What do we know, why don’t we know more and where do we go from here?

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The challenges of living with an unusual appearance: What do we know, why don’t we know more and where do we go from here?

The Author

Nicola Rumsey

Nicola Rumsey

Our second Face Equality Week blog is on the subject of living with an unusual appearance, and is written by Nichola Rumsey. Nichola is Emerita Professor of Appearance Psychology, University of the West of England, where she founded the Centre for Appearance Research in 1992 and was its Co-Director until 2018. Nichola was a member of the RCS Expert Groups on Face Transplantation from 2003-2004 and 2006-7. She was appointed OBE in 2016 for services to people with disfigurement. Nichola now works as a Consultant Research Psychologist and is developing training and clinical aids designed to improve standards of patient care in the cosmetic and reconstructive plastic surgery sectors.

The challenges of living with an unusual appearance: What do we know, why don’t we know more and where do we go from here?

The AboutFace project has given me the opportunity to reflect on the debates about face transplant that ranged from 2002-2006 in the UK and in doing so to reflect on what we currently know (and don’t know) about the challenges of life with an appearance that is different from the norm.

We live in a society that attaches considerable importance to an attractive physical appearance.  Social media and the internet, together with marketing and advertising funded by the ever-expanding cosmetics industry, have conspired to produce and then fuel unprecedented levels of dissatisfaction, worry and anxiety about “looks” in most segments of the population (for more, see Nuffield Council on Bioethics Report, 2017).

In our daily lives, we are bombarded by images of people exemplifying current appearance ideals, often accompanied by explicit or implicit messages that suggest that we should be striving to match up to these ideals ourselves. To a greater or lesser degree, we take on board these messages and the resulting belief that changes to our appearance will enhance our relationships and social lives, maybe even our achievements at work.  For many people, the value placed on outward appearance is becoming disproportionately large compared with other aspects of self-esteem and sense of self-worth.

In this social context, living with an appearance that is noticeably different to current ideals is widely acknowledged to be challenging.  Visible differences result from a diverse range of causes.  They can be permanent, temporary, progressive or fluctuating and yet, despite this diversity, the psychological and social issues that people experience are similar.  The emotional impacts can be extensive, encompassing anxiety – particularly in social situations, shame and embarrassment, negative body image, self-consciousness and a lack of self-confidence.  These impacts can also influence behaviour.  For example, the experience of negative emotions, coupled perhaps with unwanted attention or questioning from others, can lead to the avoidance of potentially anxiety provoking social situations – such as meeting new people, forming new friendships or embarking on an intimate relationship.

Despite similarities in the experiences of many people living with a visible difference, there are also striking variations in their levels of adjustment and wellbeing. Some people experience these challenges as no more than a minor inconvenience, whereas for others, there are devastating effects on psychological wellbeing and daily life. Interestingly (and often in contrast to the beliefs of healthcare professionals and the lay public), the extent, severity and cause of a visible difference are not good predictors of adjustment.

A very noticeable disfigurement is not necessarily an insurmountable impediment to a good quality of life. Neither are gender, age, or socioeconomic background good predictors of adjustment. Instead, research has demonstrated that psychosocial factors and processes play major roles in a person’s level of resilience or distress. The key role played in adjustment by a person’s outlook on life (this varies from optimism – the tendency to look on the bright side and make the most of things, to pessimism – a focus on the down sides) is now well established.  In addition, the extent to which a person’s feelings about his or her appearance contribute to the person’s sense of self-worth is important.

Think of someone’s self-esteem as a pie chart.  If the person has internalised the messages from advertisers, social media and their peers about the importance of appearance in many aspects of life, then their pie chart is more likely to be dominated by their feelings about their looks. They worry about what they “should” look like and fear that they will judged negatively by others because they are failing to match up to current standards. These people are more likely to experience distress and to judge their quality of life negatively.  If, on the other hand, the person has populated their self-esteem pie chart with lots of different elements (for example, their sense of humour; their ability at sport etc), with appearance occupying only a small segment, then that person is more likely to be resilient to the challenges of an unusual appearance (and also to many other hurdles they may encounter in life).

So, we have made some progress in understanding individual differences in adjustment to visible difference, but why don’t we know more?  The short answer is that these differences result from the combination of a myriad factors and processes  On the upside, this complexity makes us all unique. The bad news (for researchers at least) is that progress in understanding the detail is slow. Rather like trying to complete an enormous jigsaw made up of thousands of tiny pieces, some small clusters of the overall picture are now clear, but we are still a long way from completing the tantalising picture on the outside of the jigsaw box.

Researchers have very different ideas about the key variables in adjustment and use these different ideas to drive their own agendas for research. Many different methodologies and measures are used making it impossible to combine data sets from different studies. As a result, we are continuing to populate new, small areas of the jigsaw but less progress is being made with the inter-connections.  Researchers from The Centre for Appearance Research at UWE in Bristol are working hard to produce a framework of adjustment to appearance and a set of key measures, proposing these as a common currency amongst researchers in the field, but we are still in the foothills of persuading research communities across the world to join this effort.

The good news from a psychological point of view is that many of the factors that have already been identified as contributing to the wellbeing of people with visible differences are amenable to change.  For example, people predisposed to a pessimistic outlook on life can be helped to become more optimistic. The challenge is how to make effective interventions available at scale – both within the health services and also as open access resources online. Training packages designed to help health professionals and community workers to support people with visible differences have been developed, but we need to find ways to persuade those in charge of policy and practice to prioritise and fund the roll out of this training.

The biggest challenge is the societal one.  How can we bust the ‘beauty myths’ – the idea that a more ‘attractive’ appearance is the key to happiness, relationship and occupational success – and instead, promote positive attitudes towards diversity in appearance?  Achieving change at this level is complex, challenging and definitely not for the faint hearted.  To make progress, we all need to lean in and get involved.  Face Equality Week is a great place to start.

Nuffield Council on Bioethics report on Cosmetic Procedures.  2017.  Available from www.nuffieldbioethics.org

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Adam Pearson: Face Equality Week

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Adam Pearson: Face Equality Week

The Author

Adam Pearson

Interface face

This week, we are dedicating a series of blogs to Face Equality Week. The first comes from Adam Pearson, an award-winning disability rights campaigner, actor, presenter and speaker. He has a genetic condition called neurofibromatosis (NF1), which causes benign tumours to grow along the nerves.

Adam Pearson: Face Equality Week

So here we are, Face Equality Week 2020, though this one feels different to previous years. If I’d have been writing this article merely a few months ago, under normal circumstances this article would be very different in tone, style and conclusion. Though at this unique moment in human history I wanted to say something meaningful, something helpful.

Allow me to introduce myself, or for those of you who know me reintroduce myself. My name is Adam Pearson, I am a TV Presenter, Actor and Campaigner (and Celebrity Mastermind Champion). I, like over 1 million people in the UK, have a facial disfigurement / visible difference. Mine is caused by a genetic condition called Type 1 Neurofibromatosis (NF1). This condition is characterised by the growth on non-cancerous tumours, called Fibromas, on nerve endings. In the same way that cables such as iPhone chargers are wrapped in plastic, your nerves are wrapped in cells called Schwann Cells. It’s the over-multiplication of these cells that cause said tumours. The condition itself has a very broad spectrum, with effects ranging from mild to extreme, I am at the later end of the spectrum. I often refer to myself (within very selected circles) as the Spinal Tap of NF1 – and if you got that reference congratulations, you are officially cool.

My experience of living with a facial disfigurement has been filled with ups and downs, it has shaped who I am as a personal and dare I say it has made me a better person. When you boil it down, it has been one of the main driving forces in my career, after being bullied horrendously for all 5 years of secondary school I naturally fell into advocacy as an adult.

As a disclaimer I should point out that I handled being bullied terribly, at the age of 11 I guess that my emotional intelligence and social fluidity wasn’t then what it is now. I was also, be it for better or for worse, a lot smarter than the people who were calling me names and giving me grief, as a result I was able to outwit, and out-insult them at every turn, which at the time seemed both justified and hilarious but with the benefit of hindsight I now know better. Rather than defusing the situation, I was simply exacerbating it. I’m not into having regrets, though I regard secondary school, in all its dirty glory, as one of those regrets. I often say that, regardless of your position on his work, Darwin’s theory exists in perfect motion in school playgrounds across the earth.

Fast forward 20 years (God I’m old) the situation is very different, I have a voice, I have a profile, I get to travel the world making movies and documentaries, I get to talk to people about things that I am passionate about and get to hear what they, in turn are passionate about. However this whole media career was never the plan, moreover it is a very fortunate by-product of being very good at advocacy, about learning to recognise inequality (and there is a difference between things being unequal and thing being unfair) and being able to communicate that with grace, humility and humour. Even over the past year I have learned that not everything is a battle and that not every hill is one worth dying on.

Adam Pearson

I have always been incredibly grateful to have had an amazing support network, be it my parent, my friends, media professionals who were willing to take a chance on me, as an adult I’ve never really struggled to find my place in this crazy world – I am one of the lucky ones. However, I am also aware that there are people out there with a facial disfigurement / visible difference who haven’t had the same support I have.  People who live there live in constant fear of judgement and ridicule, for whom the outside world is a scary and unstable place, people for whom the idea of self-love seems so far out of reach.

If that’s you, trust me when I tell you it gets better, things get easier. I can’t wave a magic wand and make it all go away, but what I can do is be there, if your confidence is low, borrow mine, rest assured that there are people out there that love you for who you are right now, they aren’t looking back nostalgically at an older version of you they preferred. Nor are they looking to some future version of you that has their s**t together.  The person you are right now is plenty good enough, and if people have an issue with that, that is their burden to bear, not yours.

This is normally the point in one of these articles with the writer hops up on their soapbox and judges the world for its transgressions against a particular minority group, siting their own life experiences blow by brutal blow. Currently though that honestly doesn’t feel like the right tack, here in May 2020.

Right now, in the midst of COVID-19, the world has never been more equal.

Right now, for one reason or another, everyone is afraid to leave their house.

Right now, for one reason or another, everyone is staring at each other with fear, loathing and suspicion.

Right now, we all wish we could see our friends, hug them and know that, come what may, we are loved, honoured and respected just as we are.

Once this COVID-19 situation passes, that day will happen, those fears will fade, those anxieties lift and those friendship rekindle.  However, for many of the 1 million people who are affected by facial disfigurement / visible difference, the emotions may be conflicting. For them lockdown has been a welcome break from the cruel day to day life they experience, for many a return to “reality” is a return to a world that is rife with hostility, mockery and anxiety. Therefore, if you take anything away from Face Equality Week 2020, if there is one word I could burn into our collective consciousness, it would be empathy.

The very uncertainty we are all experiencing right now, that’s remarkably similar to the uncertainty I experienced at school. That feeling of being isolated, alone, not know where I fit within this ever changing world around me. So let me encourage you, no matter who you are, visible difference or not, when this is all over and we slowly go back to our lives, let empathy be at the heart of what you do.  If you see someone who looks different, smile, say hello, ask them about their stories, be united by our commonalities rather than stand divided by our differences.

Have a great Face Equality Week 2020 and thank for taking the time to read this article, I hope it helped.

Adam

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Visualising Evil: Depictions of Visible Facial Difference in Film Culture

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Visualising Evil: Depictions of Visible Facial Difference in Film Culture

The Author

Dr Sarah Hall

Facial scarring has long been used in the film industry to imply evil or villainy. In this blog, Dr Sarah Hall (University of York) explores the damaging effects of this outdated trope.

Visualising Evil: Depictions of Visible Facial Difference in Film Culture

At a pivotal moment in Star Wars: The Rise of Skywalker, the antagonist of the sequel trilogy, Kylo Ren, is healed of the facial scar that he received in The Force Awakens. That scar, which had mysteriously moved across Ren’s face by the time that The Last Jedi was released, was inflicted after the antagonist committed his darkest act in that film. That the scar healed as Ren was brought back to the light side was no afterthought. The appearance and disappearance of the scar represented Ren’s character progression from troubled, to unquestionably, abhorrently and violently evil, and back to redemption.

Visual Clues

It is a familiar trope. There is a long history of popular film culture relying on facial difference, particularly scarring, to denote villainy. Viewers are inundated with visual references to remind us of the immorality of the antagonists that occupy our screens, and the final Star Wars instalment continued to cement the narrative that a wounded face is a signifier of evil. To really bring the point home, we should perhaps remind ourselves that Ren’s redemption story failed to offer up any real reasoning for his change of heart, only that he was moved by protagonist Rey’s decision to heal him. The scar, then, becomes a primary signifier of his redemption. Not only is it a visual clue for the viewer, but its removal forms an emotional foundation for change from bad to good, dark side to light.

Star Wars is set in a galaxy full of archetypes. Good and evil form the balance on which numerous characters teeter in all three trilogies. However, this familiar simplicity should not prevent us from questioning why popular film repeatedly returns to this tired trope.

Scarring and James Bond

I am new to the AboutFace project. I will admit to not having thought critically about this issue in any depth until recently. It is something that I’ve had a background awareness of, I think you’d be hard-pressed to find someone that isn’t, but I’ve been afforded the privilege of not being directly impacted by these issues. Since joining AboutFace in March, I have been thinking about faces, facial difference, facial injury, surgery and their representations more than I ever thought I would. All of a sudden, the presence of villains with facial scarring became excruciatingly apparent. My timing was perhaps partly to blame.

After seeing a trailer for the new Bond film, No Time to Die, I decided to tackle my entrenched dislike of the Bond franchise and watch all of the Daniel Craig films before the release of the latest instalment, which was due in April but has been pushed back to November due to the Covid-19 pandemic. I was surprised. I did enjoy the films, but they also made me uncomfortable.

The Bond series is especially wedded to the trope that scars, burns, and other facial injuries signify evil. Even if you just take the recent releases, you can’t help but notice the trend: Mads Mikkelsen’s La Chiffre in Casino Royale; Javier Bardem’s Raoul Silva in Skyfall; Christoph Waltz’s Blofeld in Spectre (back for a second instalment in No Time to Die); and if one scarred villain wasn’t enough for No Time to Die, Rami Malek has also joined the cast to play a terrorist leader with an injured face, partially covered by a mask. That two facially scarred villains were written into a single film might suggest that the 25th Bond instalment may not, as hailed, be the ‘most woke yet.’ It might be fair to say that Bond films are not known for their subtlety or nuance, but these are villains played by talented actors whose abilities need not be augmented by visual scarring. Why, then, do producers continue to rely on this trope?

Credit: MGM/Columbia Pictures

The face, identity and history

The history of this association goes back further than you might imagine. Beauty ideals have long contributed to the notion that beauty equates with goodness and ugliness with evil, stemming from the classical world. While beauty ideals may have shifted over time, there is a consistent connection between the face and identity. In the early modern period, the face also carried deeper suggestions of honour, and severe facial difference or injury often carried dehumanising associations. The connection between villainy and facial scarring or difference is not new, it was not invented by film companies, though it has become their bread and butter.

These cultural and emotional histories have also been influential in contemporary medical intervention. It has been suggested that negative responses to facial difference could have emerged from a cognitive threat detection mechanism. Health professionals working on the human face, whether in psychology, dermatology or surgery, have drawn connections between disgust and facial disfigurement. Perhaps, then, producers and writers in the film industry are just playing on recognised human responses? But the argument that disgust is somehow an evolutionary response does not take into account the fact that disgust sensitivities are far from static throughout history, that ‘disgust’ is subjective, dynamic, and emotionally and culturally influenced. Is it not time to give current cinema audiences the credit that they might be able to work out which character is the villain without facial scarring?

A ‘historical document’?

In an article for The New Yorker, David Owen wrote that over time, the body becomes ‘a kind of historical document.’ Dramatic moments are memorialised in scar tissue. It rings true for scars in film. Scars can be illustrations of a traumatic incident that either marks the point of descent into evil, as with Kylo Ren, or they might signify a past event in a character’s life that has contributed their villainous state. Suggesting stormy lives, filled with pain or violence, think Heath Ledger’s Joker in The Dark Knight, scars are visual clues to a villain’s (sometimes complex) backstory. All too often, however, the scar is little more than a device to make a character appear more sinister, as with the surprisingly superficial Isabel Maru played by Elena Anaya in Wonder Woman (2017). I say surprisingly, because the film was so widely praised for its progressive outlook. The suggestion in this case is that Maru is evil from the outside in.

But while there may sometimes be a rationale for choosing to give facial scars to on-screen villains, this does not negate the significant negative stereotypes that can be associated with visible facial difference as a result. In a video produced by the Guardian, the notion that scars are representative of past trauma is reinforced. However, the speakers remind us of some of the painful reactions people have had to their scars. Whether the scarring serves to reveal the hidden depths of a villain to the audience, or if it solely serves as a visual clue for evil, the association strengthens the notion that a visible facial difference marks the bearer as unfamiliar to many audience members, defining them as ‘other.’

#IAmNotYourVillain

UK charity Changing Faces sought to challenge this tired trope in 2018 and have continued fighting for change on our screens ever since with their #IAmNotYourVillain campaign. Their call for action followed numerous studies that highlighted the negative association between visible facial difference and villainy on-screen. The charity’s CEO, Becky Hewitt, told the Guardian that young people don’t tend to make the association between facial difference and negative traits until they are exposed to popular media representations. This would suggest that the prejudice is learned, and possibly at a young age.

AboutFace hopes to contribute to the efforts set in motion by Changing Faces, challenging prejudice and misconception as part of our research, which will explore cultural systems of conformity, beauty and facial perfection in the age of the selfie both through academic research and public engagement events. Our Lived Experience Advisory Panel supports us in this work. Their involvement at key milestones in the project will ensure the research is relevant and meaningful to those to whom it matters the most.

Representation

Misrepresentation can be incredibly damaging, but so can a lack of representation. Changing Faces has called not only for fewer negative depictions of facial difference, but an increase in positive representations. They encourage the diversification of occasions of facial difference in film, moving away from the most prevalent villainy or vulnerability. The reasons for this have been powerfully articulated by some of the charity’s champions, such as Tulsi Vagjiani, a plane crash survivor who told the Telegraph that she was compared to Freddy Kreuger when she was growing up. The makeup used to transform actor Robert Englund into the notorious horror villain was based on medical photographs of burn victims, directly connecting real scarring to the demonic Kreuger.

The BFI quickly moved to support the Changing Faces campaign in November 2018, making the decision not to fund films in which the villain has scars, marks and burns. Speaking about the decision, deputy CEO Ben Roberts referred to the criteria in the BFI diversity standards, which call for meaningful representations on screen. In 2019, the BFI helped to fund Dirty God, a film about a woman trying to reclaim her life after an acid attack, starring burn survivor Vicky Knight. The film has been hailed as a strong positive representation and has also had a positive transformative effect on Knight’s own outlook.

This might be new ground for film, but it doesn’t appear to be the herald of a new era. While high-budget, high-profile films like No Time to Die, continue to dominate, can we hope to see any meaningful change in the cinematic representation of visible facial difference? The AboutFace project is seeking to explore the social context in which facial transplantation happens. In doing so, we are drawing attention to the social pressures to look a certain way. This theme of the scarred villain is part of our broader discussions of difference in societies fixated by visual appearance.

Author bio

Dr Sarah Hall is Associate Lecturer in Public History at the University of York. She was previously Public Engagement and Events Officer on AboutFace.

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Emotion, Lived Experience and Caring in AboutFace

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lived experience and caring

Emotion, Lived Experience and Caring in AboutFace

The Author

Victoria Hoyle

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

Emotion, Lived Experience and Caring in AboutFace

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

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

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

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

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

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

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

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

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

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

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