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Focus

Black but white

by Daphne Blaauw
Albinism is a genetic defect that leads to a disability to produce melanin, which is vital to pigmentation in eyes, hair and skin. The sun, instead of tanning, just burns the skin of the people who lack this pigment. Moreover, UV-light can cause severe health problems. Albinos in tropical, sun-rich countries are especially at risk. Roughly 30% of African albinos suffer from skin cancer by the age of 30. The African Albino Foundation tries to help people in eight countries by providing sun cream and raising awareness. However, there is also a social stigma. Albinos often face discrimination and prejudices. [ By Daphne Blaauw ]

The fact itself that most albinos in Africa don’t know the cause for their condition is no surprise. When an albino is born, no one in the family speaks about it. The topic is taboo to such an extent that most albinos never even ask their parents why they were born with a white skin. Doing so would seem rude and demonstrate a lack of respect.

In countries where religion is strong, albinism is seen as a kind of predestination. Some the people with this genetic defect believe that it is God’s will. They do not need to know more, they just have to live with it.

Apart from the belief in God’s will, many other explanations of albinism exist in different African countries. Often they are not publicly expressed – but as they are in the people’s minds they matter. One such notion is that a spirit impregnated a woman and via his mother entered the albino’s body. An albino I met once stated: “I am not part of the human world. I am part of the world of the spirit.” This is what he was told. Another belief is that parents had sex at the wrong time – for instance during the woman’s period, at full moon or during daylight.

Albinos may be rather well integrated in some African societies – but nowhere are they fully accepted. In their everyday life, they have to deal with lots of prejudices and preconceptions, some of which are not negative. For example, albinos are often considered as being very intelligent. The way they are seen as many a time is rather contradictory and ambivalent – as is often the case with people that are different. Some people believe albinos bring luck, others think they carry misfortune. Many people believe that albinos possess special powers, so that it is better not to turn against them, as one never knows how they might react.

The hair and blood of albinos is said to obtain special power that will bring prosperity, power and luck. The downside is that albinos are in constant danger of being hurt or even sacrificed for purposes that have to do with obtaining power and good fortune. In some countries, albinos have brutally been killed for body parts to be used in potions. In Tanzania, albinos have demonstrated against practices as these. There are many stories and rumors of albinos “disappearing” at election time.

Health risks

On top of such problems, albinos are exposed to special health risks. Their skin and eyes are in particular danger. Unsurprisingly, their self-confidence is affected too. Being black with a white skin makes you immediately stand out socially. The clear marks that exposure to the sun leaves on their physical appearance – skars, blisters, rashes and else – makes them stand out even more. Obviously, constant sun burn is, in itself, painful and embarrassing.

Most albinos are not aware of the damage exposure to the sun can cause and do not take measures to protect themselves. But even if they knew about the deadly cancer risks, only few would have the means to act accordingly. Sun-screen lotion, a rather common product in western life, is practically unknown in African society. In many parts of the continent, it is not available – and where it is, it is ridiculously expensive.

In 2004, the African Albino Foundation started to send bottles of sun cream to intermediaries in several African countries. These intermediaries take care of the distribution of sun-screen lotion and also provide advice and health education to prevent skin cancer. Moreover, albinos have to protect their eyes against UV-radiation with high-quality sunglasses.

The board of the Foundation consists of five volunteers. Many more people help out. For the time being they distribute sun cream to more than 1500 albinos in eight countries (Malawi, Zambia, Uganda, Guinea-Bissau, Senegal, Burkina Faso, Mali and Tanzania). The Foundation’s aim is simple: to improve the quality of life of African albinos. And yes, providing sun protection has a direct impact. Unbelievable that something as simple as sun cream – which we in the western world can readily buy in any chemist’s shop – can make such a difference.