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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For Face Equality Week 2021, Emily Cock writes about encountering facial difference in historical documents, and the associated emotional and ethical issues.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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When face transplants fail: Carmen Tarleton and the world’s second retransplant

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

The Author

Fay Bound Alberti

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

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

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

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

Identities

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

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

https://youtu.be/8e41-ado7dE

No simple ‘before’ or ‘after’

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

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

Second face transplant

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

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

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

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

Progress

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

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

Public conversations

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

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Drag Face: exploring my identity through masculine performance

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Drag Face: exploring my identity through masculine performance

The Author

Isabel Adomakoh Young

Isabel Adomakoh Young discusses identity, race, and performing as a drag king in this week’s guest blog. Don’t miss our other blogs exploring the connections between faces, expression and identity: Daring to be Different, by Amanda Bates and Owning by Face, by Marc Crank.

Drag Face: exploring my identity through masculine performance

As a young woman in the final years of her Bachelor’s degree, I had a complex relationship with my face already. It’s well known by now that women are under an onslaught of marketing and socio-historical pressure to take issue with our natural appearance. Young women, only just getting to know themselves and how they interact with the world around them, are susceptible to this in specific ways. 

Then there was the fact of my being one of a handful of brown faces across the entire university – “the beans in the rice”, as an African American man I once met put it. I was lucky enough, however, to have been raised with priorities beyond surface appearance, and with a sense that I was both Ghanaian (father’s side) and English (mother’s), rather than neither. I was also lucky that my appearance passed for ‘normal’ in all the insidious ways that make some people’s lives easier and some people’s incredibly hard.

I appeared confident enough to my peers, apparently, to be invited to perform in theatre shows, which I did with some trepidation and a lot of enjoyment, until one day I was asked, quite out of the blue as it seemed to me, if I wanted to come to a drag workshop. An actor I knew a bit had cooked up the idea with a director to get a group of women together and explore ‘drag kinging’. It was the first time I’d heard the phrase and it took me a moment to understand. Drag queens are historically men exploring femininity, so… kings must be women exploring masculinity! It makes perfect sense when you think of it, but I certainly never had. 

As the years have gone by since, I learned that not many people have, even now. (The binary concept of swapping opposites has also been exploded by the fantastic variety of drag performance I’ve since encountered, across the gender spectrum. But that was all still to come.) And they’d chosen me, for reasons I was never clear on, as someone who ‘might be interested’. I was.

Image credit: Alex Wojcik

A group of us met in a big college space they’d booked, with carpeted floor and wraparound windows. The two directors did a little presentation; some quotes from gender theorists, images of music hall performers, 80s musicians, smoky cabaret shows, boy bands. Gradually, we moved from discussion to action, pulling on miscellaneous pieces of clothing people had brought, watching the lines of our bodies alter. We asked, what makes a man? What do we do that most men don’t? How would you signify masculinity without words? What might your body do in public space? Alone? What is male seduction like? What about men who don’t read as conventionally masculine? It was fascinating. 

I suddenly became aware how hard I worked, almost unconsciously, to signify femininity to those around me. Decisions I’d made years ago, as a pre-teen, about “what a woman does”, how my face rests or moves, where and how my body should be. Weight on one leg, give way on the pavement, lively smile not slack neutrality. Attractiveness, passiveness, correctness. I’d grown out of ideas like putting your tongue in your back teeth when you smile, or perfecting the America’s Next Top Model “smize”, but there were stealthier, less conscious things still in there. Feminist activism had highlighted oppressive norms to me by then, but not down to my own physicality. 

I realised then that I could let go of some of those behaviours; the ones that I’d chosen not from a place of authenticity but of fear and shame, the ones that didn’t express me.

Not many of the group knew each other, but we leaned in close, sharing eyebrow pencils and contour brushes in what would become a familiar routine, but was, that first time, revolutionary for us. With the scanty internet guidance we could find, and lots of discussion, we re-invented ourselves. Moustaches and beards, sure, but subtler things too. Of course each man is different, but how to signal masculinity to an audience? Might eyebrows be heavier, might an adam’s apple protrude more, a jawline be more square? The art of contouring; many of us were well-practised in traditionally feminine makeup, but now we were in uncharted waters, our old habits useless. It was exciting. I followed along with the group’s decisions, only later recognising that a broad rule for Caucasian men may not be right for a mixed-race king.

Image credit: Stephen Allwright

We laughed as students walked unwittingly past the huge windows, thrilled to be in these new unfamiliar guises. Looking into a hand-mirror, I saw someone known and unknown, like a long-lost brother. As a child, I’d been a tom-boy for years, wishing in some nebulous way to “be a boy”. What if that kid could see me now? I even found my face moved differently; my new character raised one eyebrow suggestively, hooded his eyes and held a sleepy half-smile. He pleased an imagined audience without trying. Where did this all come from?

As we explored the theory of drag more – discussing performative gender, preconceptions and limitations, norms and expectations – the fact that masculinity really is seen as the default was brought home to me. Part of what was so liberating about drag kinging was that we were breaking free of the age-old principle that a man is a blank slate, full of potential and possibility, but a woman is a set thing, constrained; a thing to get right or wrong. 

When we’d formed our company Pecs Drag Kings, and told people about it, we often met blank looks, questions like “But what do you even do?” etc. It takes some thought to realise that masculinity is just as performative as femininity. Just because men mostly don’t paint their faces these days doesn’t mean the concept’s not hugely contrived. Our fun, high energy, surprising cabaret shows bring that truth into focus in technicolour.

Image credit: Harry Elletson

While I’m proud of the brilliant work Pecs make, and the fascinating conversations it sparks – which I love eavesdropping on in the bar after the show – I am most grateful to drag for helping me to find my own gender expression. By pushing boundaries and exploring possibilities, I’ve found a more authentic version of my day-to-day self; in my appearance and in how I move through the world. I set the terms of my gender expression now, each and every day. I’m glad that through our workshops and shows we sow those seeds in others too.

Author Bio

Isabel is a queer theatre-maker, voiceover and writer of English and Ghanaian origins based in London. After studying English at Cambridge, she trained with NYT Rep, then joined the Royal Shakespeare Company for 2019. She co-created the binary-bending collective Pecs Drag Kings, inclusive arts event Brainchild Festival and the bestselling ‘Lionboy’ book trilogy, adapted and toured globally by Complicité.

http://www.isabeladomakohyoung.com/

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Future Faces

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Future Faces

The Author

Sarah Hall

Robotics

Future Faces is one of four events and activities that AboutFace is running for the Being Human Festival in 2020. Each day during the Festival we will premiere videos of our collaborators speaking about their faces, face transplants, and what their appearance means to them. Follow us at @InterfaceKings on Twitter and Instagram to learn more and explore your questions about donation and surgery. 

Future Faces

This November, we’re asking you a question. How do you feel about your face?

On the surface, this may seem a simple question. Do you like your face or not? But it’s also deceptive. Once you start thinking about it, more questions start to emerge: would you change it if you could? How would you describe it to someone else? What does it mean to you? These questions might be more difficult to answer, and they connect with something more than a superficial response to our personal appearance. These questions drill deeper. How do we connect with our faces? Our answers begin to reveal something less tangible than an image. They draw closely on our identities and emotions. 

This is why we are asking this question for the Being Human Festival, which is running from 12-22 November in 2020. It reflects how much our project has moved forward since our launch event. Our questions and our thinking have become more complex as we learn more about faces, surgery, and contemporary cultural responses to faces and perceptions of appearance. 

So, we asked our participants in Future Faces: ‘how do you feel about your face?’ And we will be sharing their responses in a series of short videos aired on our Twitter and Instagram feeds throughout the Being Human Festival. We also ask our audience to join in. We want to hear from as many people as possible! How do you feel about your face? 

But we aren’t stopping there.

As our research has developed, so have our interests. This year we’re also asking how people think others see them. It is a question that pivots the focus. And the answers we’ve received so far have been really interesting. One person worries that they don’t look as gentle as they are, another believes that it depends on the person observing them. For me, I’ve always been told that my face betrays exactly how I feel about something. It hasn’t always been a good thing!

We’re asking people to think about whether their face represents who they are. I found this particularly tough to answer. I just don’t know. Others see my face when they speak to me. They hav learned over time to read every small or significant emotional change as expressed in my features. Perhaps to them, my face does represent who I am. But I feel like I’m so much more than my face. I am my feelings, my experiences, my beliefs and my skills. I don’t see my face as often as other people do, so perhaps this question might generate different responses if we flipped it, asking friends whether our faces represent who we are. These questions will evolve as the project continues to progress – and stay tuned for more information about our exciting new Museum of Faces, that will launch in summer 2021. 

And finally, in Future Faces we continue to wonder how people feel about face transplants. Our research has shown that many people don’t know much about the procedure. We seek to change that with our flagship Being Human Festival event, What’s in a Face? We strongly recommend that you book your ticket now, and join us not only to learn more about face transplants, but about how this medical intervention connects with emotions, identity, and art.

Face transplants continue to represent a new world, in keeping with the Being Human Festival theme this year. They are an experimental form of surgery that takes us to a place that we might not be ready for. At AboutFace, we seek to bring to a public audience information about this procedure, which is so often confined to medical journals. 

We also want to help our audiences to understand that a face transplant is not only the procedure itself, but a careful consideration of patient welfare before surgery, and lifelong aftercare following it. The transplant is a process, not a single moment. 

During Future Faces, you’ll be able to hear the range of responses from our participants, but we also want to hear from our audiences! Why not join in with our conversation? Hear what others think and tell us your own opinions. We hope that it will encourage you to think about your own appearance and how far it connects with your sense of self. 

More widely, we hope that watching these videos and attending our other Being Human Festival events will help our audiences to think about face equality and the cultural beauty standards that surround us. This is the environment in which face transplants take place, and it is vitally important that we understand this if we are to understand the history of face transplantation. 

We hope to see you at What’s in a Face? and will be sharing more about this and our other short film premieres in the coming weeks. Keep an eye out for updates, or sign up to our mailing list at the bottom of this page. 

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Reflecting on Reflections

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Reflecting on Reflections

The Author

Barry Gibb

A guest blog from Interface collaborator Barry Gibb, as part of our series of outputs for the Being Human Festival, November 2020.

Reflecting on Reflections

I’m not a fan of the mirror, avoiding them rather than seeking reflections. While my consciousness, how I see and perceive the world, is entirely unique to me, my face, it seems, can only be truly known by others.

The problem with this is that every time I see myself in a mirror, it’s a bit of a jolt, an ‘aha’ moment, as I scrutinise this body part so much of my identity is pinned to. Over time, it’s become an itinerary of failures. My cheekbones are not high enough. One eye is wider and possibly higher than the other. My lips are too thick, nose too wide. I live in constant dread of it getting fat. I do what I can to keep wrinkles at bay, even though, in my heart, I know that ageing is a privilege.

The mirror is a truth that shatters the belief I allow my mind to hold onto of how I appear to others. Like I said, I’m not a fan.

Society’s obsession

Which is why working on the AboutFace project is so utterly beguiling and uplifting – it affords the opportunity to explore society’s obsession with and attitudes towards the ‘boat race’, the mug. But the project delves far deeper than my/our own personal insecurities. We now live in a world in which face transplantation is possible. A world in which, whether through accident, illness or mishap, there are those whose face demands a level of reconstructive surgery that borders on the magical.

This is humbling. At one end of this magical spectrum are the surgical teams pioneering techniques at the forefront of reconstructive surgery. At the other are people whose lives have been dramatically impacted by the significant loss of, or damage to, their face.

But this is a bit like talking about the issues of poverty and limiting one’s understanding of the impact it has on a person to them simply ‘not having money’. For something each of us rarely sees, a face’s impact is largely a reflection of how others react to us – other people are our mirror. The face is such an integral part of human identity, communication and interaction, that the consequences of its ‘absence’ must be far reaching and hugely emotionally complex for those living with facial difference.

But while much of society seems content to accept the replacement of other, internal parts of the body, such as the heart, kidney or liver – when it comes to replacing faces, there is a far more complicated, visceral, often negative, reaction. Clearly then, the face is not just an organ. It is a body part that carries tremendous emotional and psychological weight.

Faical Meaning

Facial meaning and our reaction to ideas of transplantation is what I want to help the AboutFace team tease apart during the upcoming Being Human Festival. As a documentary filmmaker, the only thing that matters to me is what’s in front of the camera. And if there’s one thing that’s become powerfully evident during the many interviews I’ve conducted, a person’s face is just the beginning of the journey of who they are.

Working with the AboutFace team, the general public, invited guests and the wonderful artist, Clare Whistler, I’ll be turning my full attention to this emotionally tangled area where the limits of scientific and human endurance merge. We want to ignite imaginations, stimulate conversations and challenge perceptions – of transplants, faces, you!

Because, maybe it’s just me, but there seems to be a peculiarly British response to this subject matter. Despite half the western world intent on capturing a photo of their best self, in the best light and applying a beautifying filter to it, we also seem emotionally reluctant or unable to discuss issues surrounding a less than perfect face, whatever that is.

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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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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