This piece was originally published in The Globe and Mail and references photographs embedded in the original piece. To view these photos, please navigate to the original article via the link above.
Three years ago, assailants broke into Cecília’s house at night to kidnap her. Cecília, 17, is from Mozambique and has albinism, which makes her a target. The kidnapping failed, but police told her parents to keep her and her brother out of school as a precaution. “I’d like my children to go back to school but there is no security for them there,” says her mother. “... Whenever they are outside of the house, I’m always afraid.”
In Mozambique, some people with albinism are hunted and mutilated by those who believe their body parts are good-luck charms. They are kidnapped from their homes, ostracized at school and discriminated against by employers. Here, a principal in Tete province commissioned an anti-discrimination mural in his school after a surge in attacks against children with albinism.
Joao, left, is 19 years old and dreamed of being a teacher, but dropped out of school after a kidnapping attempt. Now, he plants beans and maize in the fields with his father, where the work is hard and the sun hurts his skin. “I still have the dream but I can’t go to school,” he says.
But Mozambicans with albinism are resilient. They are organizing. They and their allies are changing attitudes so that children like eight-year-old Josina (left), pictured here in 2018, can go to school in safety.
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.
Josina (left) and Luisa, shown in 2019, are best friends. Luisa is also Josina’s niece. At school, where students once called Josina hurtful names, education about albinism has made life easier. Even so, her family and older neighbourhood boys keep an eye out to make sure that she’s safe.
Josina’s teachers are supportive allies, but Fatima, 20, wasn’t so lucky. She dropped out of Grade 5 after teachers bullied her. When she would try to sit in the front of the class to better see the blackboard, one teacher would yell, “You albino, you stay where you are.” Her father’s complaint to school authorities only made things worse.
Alvin, 9, does go to school, though his mother fears for his safety. “Until last year I would walk him to school and back but I don’t any more, because he’s older and he doesn’t like me to take him to school,” she says. “He says ‘I’m a big boy now and I don’t need anyone to walk me to school.’ ... He probably feels ashamed for others to see him walking with his mom.”
“Most people with albinism hide from society and isolate themselves. Their parents are not born with albinism and don’t know how to protect them,” says Nina, 23, a volunteer for the non-profit Albimoz. She visits communities to explain albinism and teach families about the challenges their children will face. “The biggest challenge is when children with albinism go to school. It’s the first time that they are entering society so it’s a crucial period in their lives.”
But going to school as an adult isn’t necessarily easier. Fiera, a nursing student, is harassed so often that she rarely leaves the house, and when she does, she avoids markets or other crowded areas. Strangers call her “money” or “business,” in reference to her body parts.
Cesaria is a part-time teacher in Tete. In class, she’s overheard students wishing for another teacher because of her albinism; outside class, she’s often called names and insulted. “When people say terrible things to me, I never answer. ... I wonder, why can't they treat me like a normal person?”
Even after death, there is no peace for Mozambicans with albinism: Sometimes, those hoping to sell their body parts resort to graverobbing. In 2015, Flavia Pinto’s father died at the age of 52, probably due to albinism-related health complications. Almost a year later, thieves broke open his grave and stole parts of his body. He was a well-known representative of people with albinism in the community.
In her father’s honour, Ms. Pinto, right, and her family founded Azemap, a volunteer group that helps more than 200 people with albinism in Tete with crucial skincare products. That includes soap for sensitive skin, sunscreen, prescription glasses and eyedrops.
Eight-year-old Letizia, left, wears a pair of glasses she got from Azemap. She excels in school, but was once punished by a teacher for coming late to class from the bathroom, and made to stand outside unprotected in the sun. “That day she came home with burns on her arms,” says her mother, who believes she was singled out for her albinism. Letizia hopes her glasses will help her better see the chalkboard in class: “I’m so afraid of damaging the glasses; if they break, I will have nothing.”
Ms. Pinto is also in the process of adopting a toddler, Elisio, whose father was convicted of attempting to sell him and whose mother abandoned him. “It’s so exciting, because I have a connection with this child from the first time I saw him,” Ms. Pinto says. “... And I know that I’m going to do my best so that he’s a healthy and happy child.”