The experiences of people with Albinism

Fierce superstitions marginalize those with Albinism, but this are changing, like in Ukerewe, a small island on Lake Victoria.

Tanzania has the largest community of people with Albinism in the world, and also one of the most persecuted communities. Many believe that bones or organs of these people brings money and luck. Or that the ashes of their bodies, mutilated and burned, can heal diseases. There is no end to the horrors to which these people are subjected. But something is slowly changing.

In 2013 a UN declaration condemned all these cruelties while a few years earlier, in 2010, a person with albinism, Salun Khalfani Barwani, was elected to the Tanzanian parliament and certainly influenced the choices made by President John Magufuli (who passed away in 2021), with the creation of local special teams to combat violence against those with albinism.

And so regional protection associations began to spring up supported by international ones which bring about a real improvement in the situation, and now they are becoming more integrated into wider society.

Meanwhile, Alfred Kapore, responsible for the Mwanza region for those with albinism (a condition he has himself), explains that with this hereditary genetic disease, the lack of melanin leaves the skin unprotected. In Tanzania, one new-born baby out of 1400 is affected – it can become difficult to work, to move, especially in small villages, where there is poverty and often what is needed to protect oneself from the sun is lacking. Creams, glasses and hats. Where even these basics are lacking, those with albinism must keep inside away from the sun, which can feed superstitions and misconceptions.

However, there is a place, an island, which for a long time has offered refuge to these persecuted people. Like a promised land, the island of Ukerewe, in the middle of the immense Lake Victoria, still welcomes Kapore and his family. And many like him. We embark, with a nostalgic look at the elegant and dying Vittoria ship, heading for Ukerewe.

The island is large and hosts, as Ramadan Alfani, president there tells us, 82 people with albinism. It offers relative tranquillity in the shade of trees that all have a person who takes care of them, on land that is not abandoned and in front of waters full of fish.

The small children show us the pride of being able to go to school, where they are welcomed with enthusiasm by their classmates, and then, from their houses, they fetch creams, glasses, and hats (gifts from Canadian NGOs).

Here families have managed to stick together with humble resources linked to fields and fishing and, thanks to oversight by the community, dangers are fewer. But even here we must take good care of the children as they come and go to school and when darkness falls.

An island elder explains why they are afraid. People cut off arms and legs, or the genitals, and leave the corpse behind. A mother tells how her son is laughed at and excluded. There is even the desecration of burials and the fear of kidnappings. But in Ukerewe, they tell us, acceptance and integration are better observed and for this reason, many live there and form families. And there is also a legal office and a hospital, both dedicated to supporting them with their condition.

(Donatella Penati Murè)

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