On the evening of May 26, four men pushed into Charity Zulu’s house in Kalumbu Village, Zambia. They cut off her hands, pulled out several of her teeth, and left her to die. Ms. Zulu had albinism.
Some believe that people with albinism are magical, with ghost-like powers, and that albino body parts bring good luck, health and prosperity. Arms and legs, bones and blood, fingers and toes are commodities, valued in U.S. dollars and traded across international borders. This bloody cycle of supply and demand has touched off an explosion of attacks, kidnappings, mutilations and murders across 25 African countries. Friends and family are often complicit.
Over the last decade, 147 people with albinism have been murdered. Another 229 have been attacked, mutilated or abducted. Graves often have to be entombed in concrete to prevent desecration in the pursuit of albino body parts. These are just the documented cases. Statistics are hard to come by in places where police refuse to think of such violence as criminal, or of people with albinism as human.
This is why in late 2014, after years of work by activists, the UN declared June 13 to be International Albinism Awareness Day. Activists are also coming to understand that for the most part, these attacks are a relatively recent phenomenon. Capitalism and mining exploration are reaching deep into some rural areas, displacing traditional forms of social organization. Longstanding myths about albinism have combined with market forces to fuel the growth of this trade.
Politicians and the rich are buying up bogus potions made from albino body parts. Demand increases in the run-up to elections. In Tanzania, where these attacks are most concentrated, voters go to the polls in October. But the biggest killer is actually skin cancer. With little or no pigment in the skin, hair and eyes, people with albinism have no natural defence against the sun. Less than 2 per cent of Tanzanians with albinism will live to see age 40. Sunscreen is unavailable or prohibitively expensive. The heads and faces of most children with albinism are already deeply marked by sun damage. And few will find work inside, away from the sun.
Having albinism myself, this chills me to the core. If not for the random chance of geography, it could be me. My platinum hair, low vision and lack of pigment mark this very rare genetic condition. Albinism means never looking anything like family, friends, classmates and coworkers. It means stigma and marginalization.
Popular culture in North America and Europe has its own negative stereotypes about albinism. From the circus sideshow of the 19th century to the Matrix Reloaded, the idea of the magical or evil albino is reproduced every year in Hollywood. The albino character in film is always some kind of evil mastermind, twisted freak or creepy killer. Albinism Awareness Day is a small chance to challenge this stereotype; to chart a path back from the margins; to show people with albinism as regular folks, not Bond villains.
In North America and Europe we are not hunted, kidnapped or murdered. No entrepreneurs make bogus potions from our body parts. We have sunscreen.
But the stereotypes contribute to social and economic marginalization. We face violence, on the playground as kids or on the street as adults. Children with disabilities suffer higher rates of physical and sexual abuse. Albinism also carries a social stigma. As people with disabilities, we experience higher rates of poverty and unemployment, face educational challenges, are often underserved by the health care system and are more likely to be victims of violence.
But the global albinism community and its allies are fighting back: organizing from Tanzania to Canada; making and screening documentaries in places where attacks happened — sometimes projecting the films on bed sheets in small villages; finding medical assistance and sanctuary for survivors of attacks; airing informational radio programming about the condition in Swahili; supporting refugees fleeing violence; decrying negative stereotypes in pop culture; manufacturing sunscreen with kitchen mixers in the shadow of Kilimanjaro; advocating at the UN for a day to raise awareness and for the appointment of a UN Rapporteur to inform the international community about the violations of the rights of people with albinism.
Until a couple years ago, I’d never met another person with albinism. Only one in 20,000 have the condition in North America, so you don’t just run into each other on the street. International Albinism Awareness Day can help break this isolation, so we don’t have to experience the social impacts on our own, so we can start to build a global community and change a world of bad ideas.