Fighting the stigma of albinism
People with albinism face major health problems, including skin cancer, involuntary eye movements, and poor eyesight. According to a new study in the journal Anthropology & Medicine, many of them also suffer severe discrimination and social stigmatization.
To understand just what they go through, Giorgio Brocco of the Freie Universität Berlin spoke with several people with albinism in Tanzania, a country with a much higher than average prevalence. Worldwide the condition affects roughly 1 in 20,000 people, but in Tanzania, that figure is 1 in 1429.
Brocco writes: "The majority of people with albinism in Tanzania live in marginalized social conditions and a state of economic vulnerability because, apart from having a different physical appearance and suffering from visual impairments, they cannot actively take part in agrarian work due to their sensitivity to the sun, and this effectively excludes them from engaging in the major productive activity in most rural areas."
In the north west of the country, many people with albinism have suffered an even worse fate than poverty. In the mid to late 2000s, some so called 'traditional healers' and a small group of criminals, began to target people with albinism in order to kill them and use their bones and blood to make good-luck charms.
Pressure from the UN and the EU in response to the killings raised public awareness and led the Tanzanian government to take action. International NGOs and the broadcast media now play a large part in trying to raise the standard of living for those affected by the condition, principally by fighting stigma through education.
Brocco's informants are open about the issues they have faced. One struggled in business, because no one in her village would buy food or drinks touched by a person with albinism; another's husband threatened to sell her body to traditional doctors for 'a huge amount of money'; still others have struggled to find suitable work or education, making daily life a struggle.
Despite his focus solely on Tanzania, Brocco's study illustrates the effect that family ties, globalization and religion can have on the lives of people with albinism worldwide. Albinism, like other illnesses, diseases and other congenital conditions, can make people more vulnerable and affect their social and economic status. But there is hope. Religious views which see the condition as simply 'God's will' coupled with the work of charities towards normalizing the condition and family/social support can help people with albinism develop their own sense of identity, overcome the stigma and lead normal lives.