But as the founder of the Under the Same Sun, an international organization that is advocating for the protection of the rights of people with albinism, Ash – since 2008 when he woke up to a disturbing headline – well understands that life is not just slightly ‘less comfortable’ for his brothers and sisters in Africa. It is harder.
And that story was depicted within the opening ceremony – in a four-minute stage act in which a father turns his back on the screams of his daughter with albinism as she is attacked by men with machetes. The child, he argues, is not his responsibility since only the mother knows how she could have been born “that way” and refuses to take her, injured and bleeding, to hospital despite the heartbroken cries of mother and daughter.
The actors took a bow, but the terror and rejection linger in real life for the young albino actor and many in Tanzania with the skin condition which they genetically inherit from both parents. On the sidelines of the conference, a selection of pictures from the photojournalist Jacquelyn Martin’s trip to Tanzania in 2012, attempts to tell the story of people with albinism who now live out their lives in shelters like Kabanga Protectorate Center in western Tanzania, for fear of being attacked due to the superstitious belief that their body parts added to potions can bring one wealth.
Martin’s full collection features daily life stories – kids playing, women and men cooking group dinners; the boy listening to music on his mobile phone, women going shopping together at the local market… seemingly normal activities. And yet, the women are required to go out only in groups and to return early for their safety. The gates must close at a certain time. The roll call must be done several times a day to make sure all are accounted for.
At a roundtable discussion addressing the socioeconomic challenges faced by people with albinism that was hosted by the World Bank in Washington DC earlier this year, Martin told her audience that the people she interviewed during her three-week stay at the center didn’t want to spend their lives parked in government camps. “They want to be integrated, be able to marry, have children and have a life,” she said.
In the pictures are stories of defense – and defiance. Bethol Alfred aged 18 at the time planned to become a lawmaker, while Gilbert Andrews, 15, wanted to be a lawyer – so they can defend the rights of people with albinism. But there is also the story of Maajabu Boaz, the lanky 20-year-old who lives, not in the shelter, but at his parents’ home in Kibondo village. He is famous for the machetes that he moves around with to protect himself and has cultivated quite the fiercesome reputation around the village and beyond.
But for the Tanzania exhibit, only a few of the most poignant stories were selected – including that of the unforgettable Yonge staring out the window, with longing in his eyes to see parents that may never return for him… the six-year old carrying an infant on her back….
With the conclusion of the Pan African Albino Conference, the World Bank Group, together with the National Museum of Tanzania, has organized to extend the full Kabanga exhibition of the Martin’s work at the National Museum starting from today November 26, through January 2016 in order to continue to draw attention to the plight of people with albinism.
“Many people and organizations such as Under the Same Sun have been working hard to try and end the suffering of people with albinism and several achievements continue to be registered,” says Bella Bird, the World Bank Country Director. “However, the pictures from Kabanga also remind us of our duty to continue to work towards ensuring that no human being should be separated from their family for fear of betrayal and the World Bank will continue to work with partners towards this goal.”
“This is an important exhibit for our institution whose goal is to contribute to the social development of our country,” says – Prof. Audax Mabulla, Director General of the National Museum, the United Republic of Tanzania. “As people look into the eyes of their brothers and sisters in those pictures, we hope they will be compelled to further the discussion along with actions needed to ensure that all Tanzanians live without fear of being attacked or discriminated against.”