The story of the Honourable Al Shaymaa J. Kwegyir

Al Shaymaa J. Kwegyir, a Tanzanian member of parliament describes albinism as a “disability just like any other form of disability” but in Tanzania it's a condition where many sufferers are forced into hiding for fear of their lives.

Voices: A side-event organised by the UN Human Rights Office at the Durban Review Conference © UN Photo/ Patrick BertschmannNot only do many Tanzanians believe albinism is a curse, the body parts of albinos are sought by witch doctors for use in potions sold to bring wealth and good luck.

Kwegyir was speaking at Voices: ‘Everyone affected by racism has a story that should be heard', a daily side-event at the Durban Review Conference in Geneva .

She was born into a family with nine children, three of whom are albinos. Kwegyir was more fortunate than many in the albino community. “We were loved by our parents and relatives. There was no stigmatization within the family”, she said.

When Kwegyir asked her mother why she was white, what was the problem, her mother always assured her there was no problem.

For many other albinos it's a very different story. Not only are they often cast out by their own families, in some tribes they are killed immediately after birth, and they are commonly hunted down and murdered because their body parts are used by witch doctors.

There are no figures on the numbers of albinos in Tanzania but albinism is more common in Africa than the rest of the world. Around 1 in 20,000 people world-wide have albinism, a genetic disorder which results in significant reduction or absence of pigmentation in the skin, eyes and hair.

In Tanzania very few albinos manage to go beyond primary school level and they have few opportunities to compete for jobs. The incidence of poverty amongst albinos says Kwegyir, is alarming.

Their poverty also makes it impossible to access appropriate medical care including the preventative medications for skin cancer which is common amongst albinos especially in tropical zones.

With the support of her family Kwegyir managed to go on through secondary school despite the daily taunts she faced on the streets and to a career in the civil service. For many years she has campaigned for the recognition and rights of albinos in Tanzania and last year her efforts were recognised by the President who appointed her a member of parliament.

With the support of the government, Kwegyir now campaigns on behalf of all disabled persons but particularly for albinos.

At the first of the Voices side-events, Deputy High Commissioner for Human Rights, Kyung-wha Kang reminded delegates that, “amid all of this great and important weight of words, we must never forget that such words must both convey and address real experiences in the lives, struggle and suffering of individuals.”

Over the course of the week, 15 individuals will offer their personal experiences of racism at scheduled sessions each day. The “Voices” event was inaugurated at the 2001 Durban Conference against Racism.

Kang spoke of the participants in Voices as the “main event” of the conference. “Your stories represent the challenges that we are all here to confront. They will inspire and remind us of the very real effects of racism, racial discrimination, xenophobia and related intolerance on lives everywhere.”

April 2009