Identity

The Face That Looks Back

On transplants, disfigurements, and identity

8 min read

A black and white photo of a range of facial prosthetics–fake noses attached to glasses, fake cheeks, fake eyes, and fake ears.
Facial prosthetics designed for British soldiers injured in WWI. Image credit: Imperial War Museum
The logo for How We Get To Next's Identity month–a piece of paper with a face made up of other faces.

When checking out potential mates, we use neurological and evolutionary cues to screen faces. High cheekbones, a strong jaw, and a square chin are all desirable features. Smiling is seen as a sign of agreeability, and striking a kooky pose can mean we’re open to new experiences.

Consider the arrangement of the face. It is key to our relationships, both with ourselves and with others. The face we show the world reveals a part of who we are–what we’re thinking and feeling.

Now, imagine what happens when you lose your face and gain someone else’s. In 2005, Isabelle Dinoire blacked out, having overdosed on sleeping pills in a suicide attempt. When she awoke, she noticed a pool of blood where she had lain and looked in the mirror. Her face had been mauled–her pet labrador had chewed her nose, mouth, and chin in an attempt to revive her.

Fast-forward six months, during which time Dinoire had difficulties speaking, eating, and swallowing–she described how she looked as “nightmarish”–before she received the world’s first partial face transplant. In a grueling 15-hour operation, doctors took skin, muscles, and bones from a brain-dead donor–the facial tissues needed an active blood supply–and delicately stitched them onto Dinoire’s skull.

The procedure was a cornerstone in facial surgery. Some three-dozen partial and full transplants have taken place since. But they’re not without their risks. In April of this year, Dinoire passed away; reports suggested that her body had rejected the face, and the drugs she had taken since the surgery to reduce the chance of this happening had left her vulnerable to cancer.

While there’s always a high probability that the human body will physically reject any foreign part transplanted into or onto it, there’s also another risk to consider: one of becoming psychologically detached. Dinoire admitted that she battled with what she looked like; whenever she stood in front of a mirror, she was confused as to who was staring back at her.

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It’s worth noting that although identity is not the same as facial recognition, being familiar with our appearance helps us to recognize personal identity.

Anne-Marie Martindale is a post-doctoral researcher at the University of Manchester who is studying acquired facial disfigurement and how it makes sense of identity shift. For her research, Martindale interviewed 13 people, all of whom had experienced a change in appearance by different circumstances. Her participants agreed that looking in the mirror–like Dinoire had done–was “a powerful and seminal moment.”

“Most of the people struggled with who they thought they were in the aftermath of becoming facially disfigured,” she said. “Looking in the mirror, they didn’t always recognize the lives they had led before, or ones they had anticipated.”

While all 13 candidates were eventually able to negotiate a revised sense of self, it took some of them months–others years or even decades–to achieve. “The loss of control of what they once were led to quiet lives, unhappiness, and an ongoing sense of fracture,” she said.

People with disfigurements have to navigate the possibility that they might be judged negatively by others. While most of this judgment may be unconscious, there is a lingering association between facial appearance and moral character that stems as far back as Ancient Greece.

“Philosophers debated whether a beautiful appearance was illustrative of a good moral character and whether, inversely, a deformity might indicate the presence of sin or evil,” Martindale said. “This has been perpetuated over the last 2,000 years through religion, art, literature, and most recently, through pseudoscience in the 18th and 19th centuries. The idea was that you could tell a person’s moral character by looking at his or her face, or by measuring the bumps on their head.”

Consider what this type of interpretation might mean for those people who are unable to make normal expressions with their mouths, due to nerve damage causing weakness of the face muscles, or others who experience involuntary movement of their eyes.

It’s probably time that I fess up and say I have a disfigurement. I was born with it, and it’s had a major effect on my outlook. My childhood and teenage years were filled with bullying and stares, and even today I find myself in my late 20s and still bear the brunt of people’s curiosity and ignorance in both professional and social situations. I wouldn’t say I’m resilient–you might remember your parents packing you off to school, telling you that sticks and stones may break your bones but names will never hurt you (or something similar). That sort of talk is nonsense. I have just experienced such behavior to an extent that it’s become normalized.

When someone has acquired a disfigurement later in life they might not be able to cope as well as someone who was born with one. The adjustment process can be harder because he or she has been able to shape their interests, career path, and relationships without being at a social disadvantage. They know what it’s like to be able to walk down a street and not be the subject of intrigue and awkwardness, and suddenly that freedom has been pulled away from them.

As for me, no amount of angling my face a certain way can disguise the fact that it isn’t symmetrical. I don’t want that to be the sole thing I’m known for–though it appears Google’s autocomplete algorithm thinks otherwise. Type my name into the search engine and it’ll suggest “face” is what you’re looking for, over any of the publications I’ve written for.

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Why is that? Well, Martindale argues it’s because of the emphasis society places on the facial region. Appearance is central to navigating life, to making friends, finding jobs, and falling in love–factors that can influence identity. When people no longer recognize their face, they no longer recognize the person they are and have become.

But here’s where it gets complicated. There’s a lot of academic literature which infers that losing your face means losing your identity. Martindale disagrees: “There’s a theory that the transplantation of one person’s face onto the body of another will lead to identity changes, because identity is located within faces. It’s based on inaccurate ideas that we are divided into separated minds and bodies and faces, and so identities are transplantable.”

It’s the person as a whole who is responsible for shaping identity and not just outward appearances, continued Martindale. Our gender, ethnicity, and education are just a few lenses through which we live our lives and see the world, along with culture and politics. Having a disfigurement doesn’t change this; it simply throws up challenges which we use our lenses and the lessons we’ve learned to navigate.

“Humans are conscious, connected, and embodied beings whose identities are formed and recreated through their sensory engagement with the world and by continually making sense of these experiences across the course of life. We do use our eyes, ears, nose, and mouth, and they are located within the facial region, but they work together and within a context,” she said.

“Some experiences we hope for; others, like illness or change in appearance, we’d rather avoid. Whether desired or unanticipated, all of them continually shape how we perceive ourselves,” she continued. “The face is part of who you are, but it doesn’t define you, and nor should it be allowed to.”

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Matthew Linney is in his early 50s and last year had surgery to remove a malignant patch of skin from the side of his nose; the following day he had the hole–roughly the size of a dime–filled in with skin taken from his chest. (He asked that a pseudonym be used in place of his real name because he struggles with the word disfigurement. He doesn’t want to claim it “as some sort of badge of honor,” and neither does he feel comfortable taking ownership of it.) “I know that once my scar heals my life will more or less return to normal, if that’s the right word,” Linney said.

For a couple of weeks following the procedure, his nose was swollen, red, and, at times, gunky and seeping puss. Fourteen months later, his prognosis is good, but the scar is still fading gradually.

“The initial few months were hellish,” he said. “I was off work for a while, but recovering at home meant I was spending too much time dwelling on the negatives. It was festering away in my mind about how people would react. My wife was great at encouraging me to get out of the house, take the children to the park, do a weekly shop. For the most part I tried to block out any unwanted attention, yet there were times I could tell [that] people–usually parents with their children, when I was with my family–were staring intensely at me. It felt like they were scrutinizing me, questioning my ability as a husband and father. I kept on thinking that they must be wondering why my wife is with me.”

Linney admitted that such reactions from strangers made him question his masculinity. This is an issue that is seldom talked about but very much affected when a body part is lost or becomes torn, burned, or damaged.

Thanks to innovations in surgery, doctors can help make some disfigurements less noticeable, using anything from prosthetic ears sculpted from silicone, to false eyes, to noses reconstructed from cartilage grown on foreheads, to realigned jaws where bone has been transferred from the hip to strengthen it. High-tech imaging software means surgeons no longer have to rely on building 3D skulls by stacking 2D scans together–this can give a patient a better idea of what they’ll look like and allow them to prepare for the final outcome.

Yet fixing an aesthetic issue doesn’t address the underlying challenge of altered identity. Surgery is no magic wand. This is why not everyone is a good candidate for these types of procedures–especially transplants–and why any potential candidates have to undergo a battery of tests beforehand.

Ten years ago, the recipient of the world’s first penis transplant had the procedure reversed soon after because he and his partner couldn’t cope. The New Zealand man who received the first hand transplant had it removed just a few years later–he had voluntarily stopped taking his immunosuppressive drugs. Jeff Kepner, the first man in the United States to receive a double-hand transplant, isn’t happy with his new body parts since they are more or less nonfunctional, but he was advised against having them amputated as it’s unlikely he’ll be able to receive prosthetics in their place.

Elisavet Moschopoulou, a Ph.D. student exploring factors associated with quality of life and impact of sickness in long-term head and neck cancer survivors, told me that regardless of the surgical techniques employed and the cosmetic outcomes, it’s possible surgery will reduce a patient’s quality of life and their psychosocial well-being.

“Having a supportive network plays a crucial role in navigating and dealing with the social and emotional challenges attached to disfigurement,” she said. “Family and friends can help buffer the impact the disfigurement can have on well-being.”

Moschopoulou’s Ph.D. is being supported by Saving Faces, a U.K. organization dedicated to improving research into treatments for all types of disfigurement. The founder, maxillofacial surgeon Iain Hutchison, said that in cases where surgery isn’t needed to restore physical functions, it might not make sense to operate on someone in their 60s who is, say, happily married with children and maybe grandchildren; however, it might make sense to operate on someone in their early 20s, because they are just starting out in life and shaping their adult self.

Martindale is of the same opinion, arguing that “appearance-related pressures may reduce with age, and more life experiences can give a greater sense of context.”

Still, it’s never easy to predict how people will react, regardless of preparedness or the support network in place. Moschopoulou added that there isn’t any specific link between the severity of a disfigurement and how an individual might react post-surgery.

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Let’s return to Martindale’s point about the face not defining us.

In modern culture, such false historical ideas have had an unwelcome influence on popular fiction, film, and television. It’s possible to count on one hand the number of times characters with disfigurements haven’t been portrayed as monstrous or sadistic.

Second, even if cultural attitudes and stereotypes were to shift, and tropes reducing disfigurement were no longer to be seen on our screens, there’s still the added pressure that life often favors the facially unblemished. Infantile skin is also prized, and in pursuit of it many are willing to have needles stuck into their foreheads to remove wrinkles. Plus, research shows that humans have long been genetically predisposed to healthy looking faces, based on the assumption that the bodies they are attached to are not diseased or suffering from a genetic mutation.

It should be noted that people who acquire disfigurements do lead successful lives. Still, many struggle with the idea that they’ve become socially invisible, yet at the same time highly culturally visible.

Acquiring a disfigurement is fraught with complexities. There’s the initial pain and operation, followed by recovery, and then potentially problems with basic functions like breathing and swallowing, followed by more operations. Once on the mend, there are the drugs for reducing infection and the chance that the body will reject its new body part. Finally, there’s the changes in appearance to cope with.

In an ideal world, we’d all be metaphorically faceless. People who grapple with who they see in the mirror on a daily basis could walk the streets free of stares and unwanted attention.

That begs the question, though: If we couldn’t identify our face, would we have an identity at all?

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The logo for How We Get To Next's Identity month–a piece of paper with a face made up of other faces.

How We Get To Next was a magazine that explored the future of science, technology, and culture from 2014 to 2019. This article is part of our Identity section, which looks at how new technologies influence how we understand ourselves. Click the logo to read more.