Albinism is a genetic condition causing a lack of melanin in the skin, eyes and hair. It is estimated to affect one in 3,000 people in Tanzania, seven times as many as in the West. Unlike those in the West who lead relatively normal lives, people with albinism in Tanzania face a life of prejudice and illness. Visibly different/marked out from their neighbours, and ill equipped for the harsh equatorial sun, their lives are further threatened by an alarming growing criminal trade in their body parts.
In Tanzania, the birth of an albino child is seen as a curse on the family for some wrongdoing in the past. The pale skin of an albino child has lead to associations with the ghostly and the demonic and to the nickname ‘Zeru Zeru’ meaning ‘nothing’ or ‘nobody’. Previously albino children were killed at birth and then more recently, although allowed to live, they have been kept inside, hidden from the outside world by their families, ashamed of their existence and believing them to be a burden, incapable of being educated or learning skills.
Previously, those that managed to persuade their parents to send them to school struggled with bullying from their classmates and a lack of understanding from teachers about their condition. Most people with albinism are virtually blind and have difficulty seeing the black board. The lack of melanin in their retinas means light floods in unfiltered, making it hard for them to focus on an image. Increased awareness has lead to children with albinism being offered a place at the front of the class and, where possible, being given aids such as telescopes and glasses to help them keep up with their peers.
Skin without pigmentation is unprotected and skin cancer is a constant threat. People with albinism are safest when the sun goes down and they desperately seek jobs indoors. However these coveted jobs are usually skilled, requiring an education that they don’t have. Awareness about sun protection is spreading but sun-cream is an unrealistic expense/unaffordable and it is not in their culture for women to wear hats. Young girls with albinism are reluctant to cover up preferring to feel integrated with their dark skinned friends.
The small minority of people with albinism that have managed to get an education find it almost impossible to get a job. Prejudice is ingrained/rules and the majority believe that people with albinism are not as capable as other human beings. Women are particularly discriminated against. Children with albinism are often rejected by their father and women albinism are rarely married, left to cope with offspring on their own by men unable to stand the stigma of being with a women with albinism or fathering a child with the condition.
Over the last year and a half, 40 people with albinism have been murdered in Tanzania, some as young as six months old. Many more have been attacked with machetes and their limbs stolen while they are still alive. The body parts are for use in witchdoctor medicine, where they are believed to bring wealth and success in business. A boom in the fishing and mining industries, particularly in the lake region in northern Tanzania, has attracted many fortune seekers hoping to get rich quick. The killings have now spread to neighbouring countries, like Kenya, Uganda and Burundi and an international market for albino body parts demanding as much as £2000 has been rumoured to reach as far as West Africa.
All photographs were taken in Tanzania November and December 2008 with the help of Sightsavers International - whose work includes helping children with albinism and other sight problems to access education - and Action on Disability and Development.
Sightsavers International www.sightsavers.org
Action on Disability and Development www.add.org.uk.
