Medical approaches to albinism try to understand the body from the outside in.
A window poster at the Legit fashion store in Campus Square, Johannesburg, had an inscription that read: "I am a woman of colour". Of personal significance was that the photographed model would be described as an "albino".
The caption spoke volumes about the way the woman was being configured. Conceived as devoid of colour herself, it was the colours of the clothes that were being highlighted. Coded and deliberate aesthetic choices allowed for visual contrasts and deliberate double entendres – the poster relied on prejudices and anxieties around albinism to attract attention.
Billed as South Africa's first working albino model, Refilwe Modiselle is at once embraced and rejected by the accolade. In his article The Dundus and the Nation, published in Cultural Anthropology, Volume 11. Issue 4 (1996), Charles V Carnegie explains how albinism upsets the idea of a homogeneous nation by not being what the mainstream "wants". But the albino model can still simultaneously be the complete "other" while satisfying an aesthetic/commercial imperative.
As Joan Entwistle's 2002 essay in the Journal of Consumer Culture put it: "[T]he aesthetics of cultural production are not abstract, but grounded in everyday commercial practices ... A culturally valued look (the model's body) is produced through processes of cultural valorisation, through the exercise of culturally valued forms of knowledge and through winning prestigious forms of work within the fashion modelling network[.]"
The person with albinism as model is not new. Connie Chiu, Shaun Ross and Diandra Forrest serve their versions around the world. Their success is a testament to their tenacity, not societal shifts in acceptance –ironically, it is the very lack of acceptance that determines their success. So "maintaining the other as abject" is the name of the game in this case.
Let me start by stating that there are no albinos, just people with a hereditary condition called albinism. Western medicine treats albinism as if it is a fundamental flaw in the make-up of the person, while non-Western medicine simply regards the whole body as dispensable, dividable and dispersible. So a Chinese baby boy with albinism can be discarded, umbilical cord still intact, whereas Southern African mothers are advised to kill their babies, and sometimes they do.
Both traditional and Western medicine impose their perceptions on the body with albinism, assuming that the body can be understood from the outside in. Albinism in South Africa and around the world has therefore been medicalised, seeking to describe albinism while ignoring the person.
Fixation on conditions associated with albinism – such as skin cancer born of the neglect and ignorance that result from poverty; complications and assumptions around eyesight and communal normalcy; and the cumulative social consequences of all these factors – renders the body of the person with albinism a priori unwell, subject to manipulation, and accordingly a subject of the medical industry. And using terms such as illness, sickness, disease or ailment allows for the distancing of the self from the other-as-malady, and with apparent justification, if the self is to remain well. Conversely, as a medical specimen, using body parts of those with albinism by "doctors" and "patients" to alleviate conditions such as poverty, HIV and Aids or even a poor harvest, bears its own macabre rationale.
Jennifer Kromber and Trefor Jenkins, in their essay "Prevalence of Albinism in the South African Negro", which surveyed the population of Soweto in 1982, start by defining albinism: "Oculocutaneous albinism" is "a hereditary defect in the metabolism of melanin resulting in the decrease or absence of this pigment in the skin, mucosa, hair or eyes. Among Negro peoples, affected individuals have a chalky-white skin, blue or more often light brown eyes, and white or sand-coloured hair; they usually suffer from photophobia and nystagmus because of a lack of pigment in the eyes, and the condition is inherited as an autosomal recessive."
Though problematic in their condescending scrutiny and "reward" structure, their placing of the research and language within a medical trope is intriguing. Deemed a people apart, those categorised as albinos are rendered singular aberrations, and without the benefit of a unified culture or inherent solidarity to address the objectification of a collective body rendered abject, a rational and irrational language of medicine steps in as "explanation".
Myths surrounding the birth of a person with albinism abound. These include the mother being infected with albinism through seeing or touching an albino (contagion), the mother sleeping with the "wrong person" or a tokoloshe (infidelity), making fun of an albino (social impropriety), or the child simply being the result of a curse (supernatural punishment).
"Prevention is better than cure"
But between screening for the "albino" gene in potential partners, and pregnant mothers spitting when they see a person with albinism (it is believed spitting will expunge the contagion), I guess the medical adage "prevention is better than cure" comes to mind.
Once born, the child is often considered burdensome and ascribed supernatural powers; that their hair and body parts (sold in sections – hands, heads or feet, or as parts, such as bones) will bring wealth to their procurer; or through contact bring good or bad luck to an individual.
Throughout life, albinism embodied is then treated as viral, as evil, as ghostlike, as spirit and, in the end, it is purported that those with albinism do not die – they simply dematerialise. Simultaneously assumed to be strong and weak, albinism poses a psychical conundrum for those obsessed with their melanin infusion.
It would be easy enough to assume that the above are superstitions held by the unlearned, but a survey of Hollywood's productions and popular culture soon shows that origin myths, supernatural ability and demise maintain a particular similarity around the world.
That the person with albinism is fundamentally malevolent is so well established within popular culture that to see an actor with albinism within a film is to confront evil personified – think of Albino Farm. Even animals with albinism simply prove the foil needed to establish dangerous difference, Herman Melville's Moby-Dick probably being the best known.
Infanticide and neglect in literature – such as Kamala Markandaya's Nectar in a Sieve and Alice Walker's The Third Life of Grange Copeland – and in real life reinforce the dispensability of bodies seen to be neither black nor white.
While albinism is most easily noticed and defined among populations normally perceived as having dark skins, antipathy towards albinos in populations with light skins is just as intense. Films such as Powder and Me, Myself and Irene merely illustrate what life entails. And who can forget the undead Lazarus of Dan Brown's The Da Vinci Code phenomenon?
It is necessary to question the language of charity, disablement and incapacity used to describe albinism from the outside, and the necessitated demand for recognition of "humanity" for those who have begun to question their value as people from the inside. I repeat: when the human body is parted like that of a chicken (hands, feet, thighs, genitalia, head – sold by weight) and convention supports this; when objectification by Western medicine (eyes, skin, melanin, DNA) is left unquestioned; when adults are being locked in "camps" "for their own protection"; when children are denied an education; when teenagers are systematically refused any semblance of value in their own existence; and when society sits back in indifferent consumption, a paradigm shift is desperately needed.
Raimi Gbadamosi is an associate professor in Wits University's school of arts