Closing your eyes to the cruelty of life is, in my opinion, both stupid and sinful. There’s very little we can do about it. So we have to at least acknowledge it.
—Amos Oz, The King of Norway (2011)
There is no shortage of ugliness in the world. If man closed his eyes to it, there would be even more.
—Forugh Farrokhzad, The House Is Black (1963)
What is ugly? In her short documentary film, The House Is Black (1963), the Iranian poet Forugh Farrokhzad states that leprosy is ugly. The effects of the disease are ugly; our reaction to the disease is ugly. The film asks us to bear witness, to understand, to consider something fundamental: that leprosy is as much social ailment as medical illness. Part way through, Farrokhzad suspends her disembodied and insistently poetic narration, leaving a doctor to list a set of clinical symptoms: deepened and enlarged wrinkles, eaten tissue, dulled senses to heat and touch, blindness, destroyed septum, weakened liver, weakened bone marrow, withered fingers. Some symptoms are visible, some invisible, some debilitating, all defining. We study frankly the figures, their bodies, skin lesions, facules, macules, nodules, loss of pigments, thickened nerves, and flaccid eyelids daubed with make-up.
The film’s opening image is of a deformed woman, half-hidden, studying herself in a mirror. One eye is alert, the other misshapen and still. Farrokhzad’s melancholy poetry and modernist compositions frame these portraits, honouring their subjects through unadorned and expressive form. From this, the film derives its political and emotional potency. We see leprosy sufferers as both human and distinctive, as equally deserving of autonomy and pity. Farrokhzad asks us not to be surprised by their relatively normal or exceptional status, merely to look. By delineating leprosy as a singular disability, Farrokhzad exposes its particular effects.
Leprosy is also central to Yomeddine (2018), the first feature from Egyptian writer-director AB Shawky, who details an ostensibly heart-warming, quasi-paternal bond between Beshay (Rady Gamal), a middle-aged man cured of leprosy and left disfigured, and Obama (Ahmed Abdelhafiz), a 10-year-old Nubian orphan. After his wife dies, Beshay leaves his colony in search of the family who have long abandoned him. It premiered in competition at Cannes and was Egypt’s submission for Best Foreign Language Film at the 2019 Academy Awards.
Shawky’s screenplay is sentimental to a fault, and by romanticising Beshay’s path to contentment, it simplifies and universalises anguish particular to leprosy sufferers. Aesthetic choices skew and sanitise Beshay’s experiences: saturated colours; woozy focus; slow-motion sequences; mid-range, unobtrusive cinematography; a swooning, admonishing score. These are complemented by well-worn narrative cues: popular tropes of adventure fiction, crude dream flashbacks, implausibly didactic dialogue, and an overinvested donkey. All of this together contributes to a peculiar distancing, a thwarted act of striving for sympathy or engagement.
When Beshay ferrets through garbage for profitable discards and scratches his head because of upset or frustration, it articulates a personal grief. When he shields the sun from swollen and blinking eyes, or handles donkey reins through malformed palms, or lets these loose through stiff fingers, it is affecting. As a boy he is left covered in sackcloth; as a man he is abused through a makeshift veil. These events speak to private interior existence and a specific surface malady. But the distorted recurrence of Beshay’s headwear draws comparison with the real and rendered lives of Joseph Merrick, whose exact condition remains disputed.
When Beshay is further lumbered with dialogue taken straight from David Lynch’s study of Merrick, The Elephant Man (1980)—“I am a human being!”—it encourages an uncomfortable observation. The effects of leprosy are not equivalent to the effects of all suffering. This is not a question of degree but of unique experience. To suggest that a leprosy sufferer is akin to Merrick by virtue of his disability demeans rather than humanises the subject. Shawky offers this facile universalism throughout: we accept empathy as superficial, and with that, meaning is superficial, too.
Non-professional, first-time actor Rady Gamal plays Beshay without prosthetics, and this casting provides leprosy sufferers with nominal representation and voice. As Shawky noted when I interviewed him, “if we had cast a celebrity it would have been a totally different film, a different experience.” This runs counter to an industry that readily encourages ‘cripping up’ from able-bodied actors, a move which panders to our emotional investment in disabled people but shields us from their direct image and worldview. But should we have to relate to Beshay?
To elicit empathy, filmmakers often favour characters who have become disabled through accident or illness, rather than seeking to excavate hereditary cases. Recent films that enforce this trend include Stronger (2017), starring Jake Gyllenhaal as double amputee Jeff Bauman, and Breathe (2017), starring Andrew Garfield as polio sufferer Robin Cavendish. Both are based on true events; both solicit a response in which the act of becoming is deemed crucial for public address, to present a palatable difference by misfortune. Yet leprosy offers a distinguished case.
In Ridley Scott’s Kingdom of Heaven (2005), King Baldwin IV, “the leper king of Jerusalem,” is deemed so grotesque that he only appears in ornate mask. Edward Norton did not want to be billed for the role, so as to add mystery to the character. Here, the leprosy sufferer is presented as barely human, a figure without face, a masked enemy of unfathomable opposition. His illness is not hereditary, and our empathetic gaze is thwarted. So, how must a leprosy sufferer feel to see their condition depicted by someone, crucially, who has their condition? This interaction must contain potency and profundity. It is curious, even perverse, then, to choose a leprosy sufferer as your lead actor, like Shawky does, only to subsequently universalise his condition.
Shawky achieves this by casting a double leg amputee, a dwarf, and a “normal guy” as a band of self-declared “monsters” who help Beshay on his journey. That they are disabled in different ways is significant. Ignored or demeaned by most, this bridge-dwelling set of beggars are at first hostile—their territory is invaded, after all—before rallying round Beshay, whose ugly encounters with the hard-hearted population have torn apart his confidence and resolve. The viewer takes their collective will to survive and empathy for one another as given. Initial antagonism between these characters falls away into an earnest support centre. Beshay is told that, “we’ll never be normal, but that doesn’t mean we should live in shame.” Abnormality is acknowledged, but from the perspective of disability rather than leprosy.
On the one hand, this depiction of a group of “monsters” produces a sequence of worthy emancipation through solidarity. On the other, it seems to dilute experiences that may share common ground but should resist an insulting fusion. One has dwarfism; one is an amputee; the other is able-bodied, albeit downtrodden. Beshay suffers from leprosy. The common denominator is perceived monstrosity, and we are expected to revel in their companionship and camaraderie. Should we not feel unease at this universal depiction, at what is, in effect, a naturalist metamorphosis of Tod Browning’s horror classic, Freaks (1932)?
Freaks holds a foremost place in the cinematic canon. Derided on release, it is now seen as one of the great, original films of pre-Code Hollywood, the short era between the widespread adoption of sound in cinema and the introduction of censorship guidelines. In Browning’s film, a circus of freaks, hosting a range of disabilities, are manipulated and abused by the able-bodied performers. The freaks band together to wreak ultimate vengeance.
Freaks is “subversive” and “fun,” according to the writer Colm Tóibín, because the title characters “are allowed to fall in love, get involved in treachery and jealousy, be greedy and nasty and horny” (LRB, 2017). The freaks exist in an identifiably Rabelaisian agon, one that eschews political emancipation for primal revenge. The film is better for it. Occupied on set by jealousies, rivalries, and entitlements, many of the disabled actors embody characters who are conniving, lovelorn, and pathetic. Humans, then.
Shawky similarly wishes to evoke the humanity of his subjects. He cites the “heart-breaking and at the same time interesting” wedding dinner in Freaks as its most profound moment. A table includes dwarves, amputees, Siamese twins, and pinheads. The able-bodied, scheming, malevolent Cleopatra (Olga Baclanova) rejects the disabled performers’ initiation ceremony, desecrating a universalism that Shawky, in his film, wants to build and uphold.
In Freaks, the celebratory, hallucinatory montage of the feast forges indistinction between normality and exception, culminating with the refrain, “we accept her—one of us—gooble, gobble—we accept her—one of us—gooble, gobble.”In turn, it is thematically simpler for Shawky to consider that his disabled group—the leprosy sufferer, the dwarf, and the amputee—is a homogenous Greek chorus, a law unto itself, and that to offend one is to offend them all. As such, Shawky does not overtly grieve for his characters, but nor does he distinguish between them, either.
Shawky suggests Freaks and The Elephant Man as cinematic examples that discourage “pity and poverty porn,” that “give dignity to [disabled] characters,” that “look at the world through their innocent view,” and that acknowledge their desire to live independently. These are fair points given dubious translation in Yomeddine, a formally conventional crowd-pleaser comprised of telegraphed narrative beats and asinine politics. It is valuable to invoke the image and humanity of a leprosy sufferer in order to protect him from prejudice, to make visible and appreciate his condition. But it is queasy to suggest he is akin to all downtrodden and disabled people through condition alone.
Like the constantly blinking kibbutz gardener in Amos Oz’s story The King of Norway, Shawky acknowledges cruelty and unfairness but chooses neither to pity nor apprehend those who suffer from it. In Yomeddine, disability is a concoction in which different individuals are stirred together, producing a liquid mixture of unity that debases particular experience. In rendering their lives this way, Shawky is caught mid-blink, in a confused bind of sight and sightlessness. And the viewer, in thwarted closeness, sees the disabled figure only as part of a cooperative enterprise, not as a life in itself.
An unsurpassed work, The House Is Black provides a fearless counterexample to Shawky’s rendering. Farrokhzad, instead, produces a stark, unsettling illustration of leprosy, one both normal and exceptional, unfettered by pleas to universalism. Near the end of the film, a teacher leads a discussion for the children in the colony.
“You, name a few beautiful things.”
A young boy answers, “the sun, the moon, flowers, playtime.”
The class giggles.
“And you, name a few ugly things.”
Another boy answers, “hand, foot, head.”
The children laugh wildly.
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