As A Different Man begins, writer-director Aaron Schimberg sets the stage for a film that will question the performance versus the lived experience of disability. Viewers first meet Edward, a man with neurofibromatosis (Sebastian Stan, wearing prosthetics to mimic the condition’s facial tumors), in a generic office. He groans in pain until a co-worker (whose face is not disfigured) comes in to check on him. As the shot pans out, we realize that they are merely acting, in what we will later learn is an instructional video for office workers to help them adjust to the prospect of working with individuals with facial differences. The performative nature of this scene introduces the deep desires that will motivate Edward’s decisions over the course of the film. Edward desperately wants people not to take notice of his unusual face, and to be as ‘normal’ as possible, a dream that will lead him to sign up for an experimental treatment that ‘fixes’ his genetic condition. Yet he also wants to be seen—not for his face but in spite of it.
Edward makes his way through the world in a constant state of paranoia, perpetually on guard against people who might take special notice of his unusual appearance. His paranoia is justified, a byproduct of a society that views ugliness—and, in particular, disfigurement—as cause for disgust and rejection. It’s impossible for Edward to forget how people see him, since he’s even treated poorly in his own apartment building: one of his neighbors mutters “Jesus Christ” every time they cross paths, shuddering at the sight of Edward’s face. On another occasion, a stranger at a bar insists that they’ve met before, standing too close to Edward as he talks, claiming, “I don’t forget a face!” Is this man mocking him, or is he just a drunk? Edward can never be sure.
Even those who treat him with more kindness still view him as a curiosity. In one scene, his landlord asks him to feel his neck, as though the tumors on Edward’s face have made him qualified to detect tumors in the bodies of others. Another tenant cheerily tells him that “all unhappiness in life comes from not accepting what is.” Though this advice is undoubtedly correct, it’s easier to dispense than to live by, and this tenant undermines his message by condescendingly referring to Edward as “little man.” (Sebastian Stan is six feet tall.)
In film and in life, disabled people1 are often treated as children who are unable to make decisions or to desire sex—an attitude Edward seems, at least partly, to both resent and believe himself. Edward pines for his conventionally beautiful new neighbor Ingrid (Renate Reinsve), but their relationship is awkward, impeded by Edward’s desperation and Ingrid’s lack of interest. Though Ingrid is friendly to Edward, her kindness is inextricably entwined with morbid fascination. She is startled by the sight of a photo of Edward and his mother when he was a child, before his facial tumors began to grow, and in one scene she comes up with an excuse to try to touch his face, embarrassing them both. She can also be clueless: in one scene, when they are eating by a restaurant window, a stranger appears outside, smiling darkly and waving insistently at Edward. She is baffled by the sudden presence of this stranger, apparently unable to conceive of the harassment that is a normal feature of his life.
Ingrid is a particularly beautiful woman by traditional standards, and is no doubt used to men throwing themselves at her feet whether or not she’s interested in them. She also doesn’t owe Edward her affection. But instead of seeking connection (and possible romantic fulfillment) elsewhere, Edward sinks further into despair, until he chooses a radical experimental treatment to ‘cure’ his condition.
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American society has long treated ugliness, and by extension disability, as something to be hidden away and rejected. In the late 19th century, for example, cities across the country passed “ugly laws” prohibiting visually different individuals, and disabled people more broadly, from begging and even sometimes appearing in public. One woman, “Mother Hastings,” was told in Portland c. 1916 that she was “too terrible a sight for the children to see.” While such laws no longer exist, disabled people continue to face discrimination in the workplace and social rejection. The instructional video in which Edward appears, which reminds workers without disabilities that they should treat their colleagues with facial differences like human beings, illustrates this ongoing problem. “Ask how they’re doing occasionally, as you would ask anyone else,” the perky narrator suggests.
As Heather Laine Talley argues in Saving Face: Disfigurement and the Politics of Appearance, all kinds of bodily disfigurement and variance can cause social stigma and discomfort, but facial difference is uniquely othering. The writer Lucy Grealy, whose face was disfigured due to cancer treatment in childhood, writes in her memoir Autobiography of a Face that “I was my face, I was ugliness.” Though Grealy went on to have a robust social life and find success as a writer, as she writes in her book, her feelings of self-loathing and alienation due to her appearance were acute.
Given the culture in which she lived, this is hardly surprising: “Facial appearance,” Talley writes, “is currency”; without that currency, individuals suffer acutely, are liable to experience social death. While there is no standardized definition of social death, one sociologist describes the condition as being “manifested when people no longer have any hope of engaging in social roles and having social participation and are considered dead while biologically alive.” Without his tenuous connection to Ingrid, Edward arguably fulfills this definition.
One way to avoid experiencing social death, or at least to stave off its worst elements of despair, is to seek out others who share your experiences. Despite acting in an instructional film alongside other actors with facial differences, Edward has no social contacts living with a similar condition. To borrow the language of disability activist Mia Mingus, he is “descriptively disabled”—“someone who has the lived experience of being disabled”—without being “politically disabled”—someone who “has a political understanding about that lived experience.” Given this lack of insight, it’s perhaps unsurprising that, when given the opportunity to potentially ‘cure’ his neurofibromatosis, he jumps at the chance.
Edward’s doctors recruit him for a medical trial in which he is injected with a drug that should cure bodily “defects”; which, as his doctor proclaims, “is paramount to a patient’s physical appearance.” As the days pass, he notices first that a minor wound in his hand has entirely healed, and then that chunks of his face are, well, falling off. As these scenes progress, Stan lets out ever-more agonized howls and tears at the disturbingly convincing prosthetics on his face, which come apart in a nauseating slide of viscous tissue and blood. When the “healing” process is finally complete, Edward is left with Stan’s real, conventionally handsome face, a change so dramatic that he spontaneously decides to vanish from his old life without a trace, leaving the few people who knew him to imagine that he’s died by suicide.
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In having Edward successfully seek a cure for his neurofibromatosis, A Different Man references other narratives in which disabled characters are miraculously cured; The Secret Garden and Heidi are two particularly famous examples. In those books (and their adaptations), however, the sick characters just miraculously get better, whereas Edward makes an active choice to seek a cure.
Many disability activists and theorists have argued against medicine’s fixation on cure. As Eli Clare argues, this focus suggests that disabled people are inherently wrong, flawed, impure. While some disabled people, particularly those with painful chronic illnesses, would happily accept a cure, many others do not see their conditions as detrimental to their experience of life. Deaf communities, autistic people, and others (including Clare, who has cerebral palsy) do not want to change; instead, they ask society to better accommodate their needs. Disability is a natural part of human variance, and as Clare points out, curing these variances means “eradication and the many kinds of violence that accompany it.” Edward’s screams as he pulls off bloody sections of his own face are, if nothing else, a violent eradication.
As philosopher Yves Saint James Aquino has argued, cosmetic surgeons have increasingly treated ‘ugliness’ as a medical pathology even outside the context of facial difference. “[T]he framing of unattractive features as a type of disease or deformity” allows cosmetic procedures to be “reclassified as therapy or medically necessary treatments.” Aquino allows that there are cases—including birth defects such as cleft lips—where intervention has long been considered medically necessary, but in many more cases, “the distinction between cosmetic and therapeutic is not straightforward.” As I read Aquino’s article, I wondered whether Edward’s experimental procedure would be considered cosmetic or therapeutic, and couldn’t come up with a satisfactory answer. But his argument is based on the idea that the distinction between those two terms is becoming increasingly foggy, and ultimately that medical professionals as well as society at large are increasingly sending patients the message that changing their appearance is a medical necessity.
Though Edward’s condition does require medical maintenance, Schimberg presents it as primarily an aesthetic problem (one that his doctors, like the cosmetic surgeons in Aquino’s study, are eager to try to resolve). Edward struggles, first and foremost, with how other people perceive him and how aware he is of their perception. Disability activists would argue that having neurofibromatosis is only a problem if people react to you with scorn or fear, but changing the attitudes of everyone around you is no easy task. Edward is justifiably hyper-aware of how the world around him sees him, and that awareness inhibits him. He believes that curing his neurofibromatosis, and moving closer to society’s agreed-upon aesthetic ideals of beauty, will ‘fix’ his life. But as we discover in the film’s second half, life is rarely so simple.
As most people know, cure is a fantasy. Even if being able-bodied would radically improve your life—as it would for many chronically ill people, myself included—fixating on a solution that probably will not come can be punishing. Disabled activists instead encourage other disabled people to learn to live with their conditions. But Edward, who exists outside the disability community, has no reason not to yearn to be ‘normal.’ As a straight, cis, white man, he will be catapulted into the envious position of being in the most powerful demographic in America if his treatment is successful. While we might expect that other marginalized groups—including disabled women and people of color, would be more motivated to seek cure, being multiply marginalized can also lead to an enhanced political understanding of disability, an appreciation of the variance of human experience, and solidarity with other marginalized people, disabled or not. Edward, who does not view his disability through a political lens but instead as an individual disaster, has little motive to feel pride in his appearance or solidarity with others who share his experience.
Edward’s fantasy of belonging to the ruling class comes true immediately. When he visits the bar he regularly frequents, no one recognizes him. Instead of being mocked or ignored, he is welcomed into the fraternity of loud, unruly drunk men who flood into the bar, seizing his shoulders and whooping. “Yeah!” Edward shouts into another man’s face. “Yeah!” Later that night, a woman gives him a blowjob in a dingy bathroom while Edward gazes lovingly at his own face in the mirror, amazed at how easy it is to fit in if only you look like everyone else.
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Edward’s new face does change his life in some significant ways. Now going by “Guy,” he works a cushy real estate job that pays well enough for him to move into a spacious, light-filled apartment. He dates a beautiful woman. But although his face has changed, he cannot forget the decades of his life he lived as Edward. When he discovers that Ingrid has written a play inspired by him and is looking for men with facial difference to audition for the role, he is desperate to play the part despite his current appearance. Instead of explaining his situation to her, he auditions with a mask of his old face, claiming that he is drawn to the role because he had a childhood friend with neurofibromatosis. (Like Edward, this ‘friend’ ‘died.’) He gets the part and goes to bed with Ingrid, a fantasy his past self could not achieve—events that seem to prove his decision was for the best.
But things start to go wrong for Edward when Oswald (Adam Pearson), another man with neurofibromatosis, arrives at a rehearsal. (Pearson has neurofibromatosis in real life, unlike Stan.) Unlike Edward, Oswald’s life is not defined by his appearance; outside of the play, he rarely mentions it. Instead, his life and relationships are characterized primarily by his carefree attitude and love of life, forcing the audience to reassess how much of Edward’s previous isolation and misery were the result of his appearance rather than his own self-defeating behavior. Oswald is much happier than Edward was before his treatment, and he is crucially also much happier than ‘Guy’ is now, even though Guy seems to be living Edward’s dream life. Oswald charms Edward’s colleagues, he is beloved by women all over the city, and he is so rich that he doesn’t have to work. He treats Edward—whose performance as a man living with facial difference many would find offensive—congenially, which makes Edward resent him even further. Eventually, predictably, Oswald begins to usurp Edward’s role in the play: first they share the part, then Edward’s presence becomes unnecessary. Also predictably, Ingrid falls for Oswald and loses interest in Edward (or Guy, as she knows him).
Though Edward is now beautiful, he has not managed to shed the paranoia and self-consciousness that inhibited him before his transformation. Oswald begins appearing so often and in so many areas of Edward’s—or Guy’s—life that Edward begins to suspect him of nefarious intentions, but Oswald never gives Edward real reason to think he is trying to harm or undermine him. Oswald’s real offense is living a fulfilled life with the condition that Edward once found an intolerable burden. The crisis this inspires in Edward is twofold. First, Oswald’s happiness forces Edward to consider (or perhaps desperately avoid considering) the possibility that the problem was not his face but his personality, which the treatment has not changed. Ingrid leaving him for Oswald challenges every assumption he had made about his ability to form relationships with women. If no woman could possibly desire a man with a face like his, how can Ingrid desire Oswald? And what does this say about Edward?
More troublingly, though, Oswald’s presence in Edward’s life serves as a constant and paradoxical reminder of what he has lost by curing his neurofibromatosis. As the second half of the film progresses, and Edward becomes increasingly psychologically unstable, it seems hard not to interpret that instability as a result of his decision to erase a fundamental part of his identity: his disability. He longs to play the title role in Ingrid’s play about him, despite its maudlin dialogue, and to once again be seen and recognized with the (now prosthetic) face that was his for so many years of his life. But Edward’s desire to control how he reveals parts of himself prevents him from any real emotional disclosure. Although he could confess that he has faked his own death to Ingrid, he never does. Nobody in the movie ever sees him for who he really is, perhaps because he doesn’t really know himself.
After Oswald takes over his role in the play, Edward is left at the bar, listening to a white, male audience member reflect that underneath “all that,” Oswald must be a regular guy—right? Later, when Edward is recuperating from injury and living with Oswald and Ingrid, his physical therapist, also a man, also white, whispers, “What the fuck is going on with his face? Is he rich or something?” Edward, who has been struggling to walk, manages with a burst of energy to cross the room to stab the therapist in the chest. The fraternity of men that Edward once longed to join is not so desirable when you are asked to collude in treating someone whose experience mirrors your own as less than human. Edward may hate Oswald, but he cannot forget that he once looked just like him.
The rare films that actually choose to depict disabled characters typically treat them as sources of inspiration (e.g., The Theory of Everything), relegate them to secondary roles in which they support an abled character (e.g., CODA), or infantilize them (e.g., Music). Facial difference primarily appears on screen as a sign to the viewers that a character is a villain. A Different Man, by contrast, takes the experience of disability seriously by refusing to engage in these tropes—a refreshing change for disabled viewers, like me, who rarely get to see our experiences depicted on screen, and are used to being condescended to on rare occasions when we are represented.
Unlike Edward and Oswald, my disability is invisible: to the outside world, I appear able-bodied, and so my experience largely consists of convincing people, especially doctors, that my long Covid and ME/CFS (chronic fatigue syndrome) symptoms really are debilitating. Edward, by contrast, can’t escape being identified with his disability; in some ways, his quest in this film is to achieve a version of my experience, in which disability is a hidden, internal experience. Despite how radically different my experience has been from this character’s, though, I felt both recognition and relief watching A Different Man. Disability is a wide umbrella term, one that encompasses a wide variety of lived experiences, but all of us exist outside a prescribed and idealized norm of what the body is supposed to be. Though embracing this outsider status can be liberating, as Mingus argues, it can also be isolating and immiserating. Though Schimberg does not valorize Edward’s misery, he does not dismiss the real struggles he experiences, either.
Most importantly, Schimberg sees this central character not as an inspirational symbol (or as a frightening symbol of evil) but as a normal, flawed human being. He complicates familiar and over-simplified disability narratives, asking viewers to sympathize with Edward but also to recognize that his refusal to accept his disability impedes his ability to maintain relationships with other people. As Edward slowly drowns in the muck of his own deception and self-loathing, Oswald dances in and out of the frame, a puckish reminder that an alternate life exists, if only Edward had the ability to reach for it.
- In the disability community, there are several opinions about preferred language and terms. We’ve chosen to use identity-first language in this essay—that is, “disabled people” rather than “people with disabilities”—based on the preference of the writer and the National Center on Disability and Journalism’s style guide.