Samer Muscati is a Canadian lawyer, documentary photographer and former journalist. As a senior researcher for Human Rights Watch, he focused on women’s rights in conflict zones. He runs the International Human Rights program at University of Toronto’s faculty of law.
Like so many eight-year-old girls, Josina loves going to school. She sits in the front row, close to the blackboard, enjoys learning her alphabet and mathematics, and hanging out with her best friend. Her most-desired gift though, is unusual for a child her age: sunscreen.
Josina lives in Tete province, Mozambique, and has albinism. This genetic condition, which affects as many as one in 5,000 people in sub-Saharan Africa, leaves people at very high risk of skin cancer. And it can lead to a range of significant human-rights violations that spans their entire lives – from “cradle to grave,” says Ikponwosa Ero, the UN’s Independent Expert on the enjoyment of human rights by persons with albinism.
From the moment they are born, children with albinism in Tete province are at risk of infanticide or abandonment by fathers who may believe the child is cursed or diseased, or the product of an extramarital affair. Often, children grow up in a world of widespread discrimination that includes constant verbal abuse, bullying, exclusion from public services and difficulty finding jobs. Some even face extreme violence, including killings, abductions and mutilations because some people believe their body parts hold magical powers and bring good fortune.
A wave of kidnappings and attacks that terrorized people with albinism in Mozambique started in 2014. At the peak of the abductions and physical attacks in 2015, Ms. Ero received reports from civil-society groups of more than 100 attacks in Mozambique in that year alone.
Despite recent efforts by Mozambique’s government and organizations to sensitize the general public, progress in understanding albinism remains fragile, especially in rural areas. In these communities, people with albinism continue to face stigma and rejection, sometimes from their own families.
With help from the non-profit group Azemap – founded by Flavia Pinto, whose father died in 2015, likely due to health complications related to his albinism – I, on behalf of Human Rights Watch, interviewed 42 people with albinism and their relatives in Mozambique, as well as community leaders, teachers, school principals, albinism advocates and government officials. (In order to protect their privacy and shield them from potential repercussions, I changed some names or used only first names.)
Ms. Pinto’s organization performs a crucial function in a country where the government does little to prioritize the needs of people with albinism. Azemap is working with officials to create a public-awareness campaign and get kids who have not been able to go to school into the classroom. The better that people with albinism understand their rights, the more they will demand action from their government.
It may take a village to raise a child, but the state also has its responsibility. The Mozambique’s government has an obligation under international human-rights law to ensure these kids have the same opportunities as everyone else to learn and thrive. Josina, and so many other children with albinism, is counting on it.