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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

REPORT: Profoundly Misunderstood

Tokyo Albinism Conference touches on some familiar themes for leprosy.

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A first for Japan: an international conference on albinism

Albinism is a genetically inherited condition. Leprosy is an infectious, curable disease. But in terms of society’s response, they share some unwanted similarities.

The recent Tokyo Albinism Conference highlighted the ways in which ignorance, superstition and mistaken beliefs about people perceived as different can have harmful—and, especially for persons with albinism—deadly consequences.

The conference was organized at the initiative of Nippon Foundation Chairman Yohei Sasakawa, who on his travels to Sub-Saharan Africa as WHO Goodwill Ambassador for Leprosy Elimination had become aware of the violence and discrimination that persons with albinism face. It drew panelists from Tanzania, Kenya, Malawi, Hong Kong, Canada, as well as host country Japan, among others.

Many with the condition live in fear of being assaulted or killed for their body parts.

Albinism prevents the body from producing melanin, the pigment that colors the skin, hair and eyes. Those born with the condition have reduced vision and are more susceptible to skin cancer—many people die before the age of 40 if they do not take proper precautions.

In North America and Europe, 1 in 17,000-20,000 people have albinism, but the prevalence rate is much higher in Sub-Saharan African countries such as Tanzania, where it is estimated at 1 in 1,400 people.

Problems persons with albinism encounter range from name-calling through discrimination in education and employment to violent physical attack. In Sub-Saharan Africa, because of superstitions that they have special powers, many with the condition live in fear of being assaulted or killed for their body parts, which are used by witchdoctors to make magic potions or amulets. Fueling the lucrative trade are politicians who consult witchdoctors because they want to stay in power, and wealthy business people who want to be more successful.

According to the UN independent expert on the enjoyment of human rights by persons with albinism, Ikponwosa Ero, there have been some 700 documented attacks on persons with albinism in 28 countries since 2006, involving murder, mutilation and sexual violence—and those are just reported cases.

A survivor of one such attack spoke at the conference. Ten years ago, Mariamu Staford was set upon in the night by four men, including a neighbor. Her arms were hacked off in front of her child, and she lost the unborn baby she was carrying.

A journalist who went undercover to investigate the lucrative trade in body parts for the BBC found her report displeased the authorities, for whom the image of the country was more important than the human rights of persons with albinism. “I was told I had tarnished the reputation of Tanzania,” said Vicky Ntetema.

WRONG THINKING

As with efforts to reduce the stigma and prejudice associated with leprosy, education and advocacy are crucial to changing mindsets.

“Wrong thinking exists in every culture,” said Peter Ash, who founded the NGO Under the Same Sun for persons with albinism. “There is misinformation around this condition even in countries with high levels of medical care.”

Governments need to be sensitized— “some government departments have no understanding of the issue,” the conference was told—and there needs to be political will to protect persons with albinism.

There needs to be engagement with media, with religious leaders and with tribal chiefs to increase acceptance of persons with albinism.

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Model and jazz singer Connie Chiu: “I have albinism. So what?”

Albinism needs to be fully recognized as part of the disability sector, with access to the considerable resources that exist there. The role of the judiciary is important to upholding the law and in prosecuting crimes against persons with albinism.

In particular, there is a need for more positive role models for persons with albinism—public figures such as the judge and the parliamentarian among the panelists—who can inspire through their words, deeds and successes, and help change society’s perceptions.

“Nobody will accept us until we accept ourselves,” said Connie Chiu, a Hong Kong-born person with albinism who has made a name for herself as an international fashion model and jazz singer. “I have albinism. So what? Those with the problem are society.”