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Lightness, a 13-year-old girl with albinism, and her family attend a Lutheran church every Sunday. Ukerewe Island, Tanzania @2016 Sacha de Boer

All names have been changed for pseudonyms.

“My mother told me that my father refused me,” Amanda, a nervous 12-year-old, tells us. She is sitting in an empty classroom in Mwanza, northwestern Tanzania, her fidgeting hands placed over the skirt of her school uniform. “I miss my mother,” she adds, “the last time I saw her was in 2015 and she came only for a day.”

Like all of us, Amanda’s experiences are a result of life’s grand lottery. She was born with albinism, in a region where some see her as a commodity.

In many parts of East Africa, people with albinism are targeted for their body parts, which some believe hold magical powers and bring good fortune. Over the last decade, Under the Same Sun, a Canadian group working with people with albinism, estimates that over 200 people with albinism, many of them children, have been killed in Africa or had their body parts amputated. They say at least 75 people with albinism have been killed in Tanzania since 2006. Faced with increased international scrutiny, Tanzania began to mobilize resources to fight off traffickers and protect people with albinism.

Local organizations told us that since 2007, Tanzanian authorities ordered hundreds, maybe thousands, of children with albinism to be placed in closed government boarding schools that acted as protective shelters, separated from their families. These placements sometimes happened without consultation or consent of child or parents. People were often pressured by community leaders to bring relatives with albinism to shelters to avoid having to protect them at home. Some parents used the shelters to abandon their kids.

At six, Amanda was taken to one such shelter, about an hour and a half from home. “I was left there alone by my mother and I felt sad because she said she’d come back but barely ever did,” she said. An international organization later sponsored Amanda to attend an inclusive private school that has children with and without albinism as its students. Amanda embraced this opportunity to thrive, despite being away from her family. “I want to become a doctor. I like to help my friends and even people I don’t know well,” she tells us.

Ten years on, killings and attacks have decreased because of Tanzania’s protective measures and stronger response to ritual crimes and attacks against people with albinism. It is therefore no longer acceptable that children with albinism be forced to live in shelters. Recognizing this, local organizations are now making efforts to reunite children and families.

This can in part achieved because the Tanzania government worked at improving their security at home, by investigating, arresting and prosecuting those who attack or sponsor attacks against people with albinism. In 2009 and 2015, Tanzania banned witchdoctors and the BBC reported  that over 200 suspects, including some allegedly involved in killings of people with albinism, were arrested by the authorities. But the Tanzanian government needs to do more to reunite families, to combat stigma within communities and ensure that family caregivers have the financial and social support they need to care for these children.

Local organizations have for years reached out to communities to raise awareness and acceptance about albinism and provide direct services, such as health screenings.

In a village three hours south of Mwanza, we met 7-year-old Laila and Atiena, her 85-year-old  grandmother. Unwilling to accept a child with albinism, Laila’s father abandoned her. Her mother struggled to cope and eventually the government decided to place Laila in a shelter for about a year. In 2016, the government brought Laila back home and told Atiena to take care of her. “Now, I cannot assist the other grandchildren. I only have the strength for Laila,” she tells us.

Laila, on the other hand, is thriving. “I am happy to be here, I love my grandmother,” she says. “I cannot go alone without her. I don’t go around and play with the other children because some beat me and say bad words to me. Then I always cry.”

Laila would like to go to school, learn and read books. “I don’t have the money to put Laila through school,” her grandmother says. “I am also concerned about how Laila would be perceived in school. There are people who don’t view her well at all… I wish for Laila to become a doctor or a teacher. I don’t want her to simply become someone’s wife.”  

In addition to protection and financial resources, children with albinism need love and a sense of belonging, like any child. While no government can force parents to accept their children as they are, they should create sensitization programs to debunk myths and educate parents.

Samuel, a retired professor, could serve as a good example. He values loving his children regardless of what they look like or what others think of them.  “I have four children with albinism – two boys and two girls. It is the choice of God. God is giving. So you should be with your children, as a father,” Samuel, 73, tells us proudly. “These are our children and you should not expect them to be just like you. You should just be with them.”

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