From Cradle
to Grave

Discrimination and Barriers to Education for Persons with Albinism
in Tete Province, Mozambique

By Samer Muscati
Photographs and Video by Marcus Bleasdale

Like so many of her classmates, Josina loves going to school.

The eight-year-old sits in the front row, close to the blackboard, enjoys learning her alphabet and math, and hanging out with her best friend, Luisa.

While these things bring her joy, what she would like most is unusual for a child her age: sunscreen.

Josina lives a thousand kilometres north of the capital in the central Mozambican province of Tete and has albinism, which means she has lower levels of melanin in her skin and therefore looks much paler than most of her classmates.

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. Because of this condition, people living with albinism often face a range of significant human rights violations that spans their entire lives – “from cradle to grave,” according to the United Nations Independent Expert on the enjoyment of human rights by persons with albinism.

From the moment they are born, children with albinism in Tete province and other regions of Mozambique are at risk of infanticide or abandonment by fathers who may believe the child is cursed or diseased, or the product of extramarital intercourse. Often, children grow up in a world of widespread discrimination that includes 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.

After a wave of kidnappings and attacks that terrorized people with albinism in Mozambique started in 2014, local police warned Josina’s mother, Joana, to take extra care to keep her child safe. While Joana was worried about her young daughter, she was also determined that Josina should have a normal life like other children without albinism. While some other parents kept their children with albinism at home as a precaution, she enrolled her in Grade 1 and walked her to and from school every day, even though that meant she had less time for farming – and, as a result, less food and income for the family.

“We would not let her go out to play with other children, we kept her close and kept her indoors,” Joana told us in 2018 when we visited Chiuta District in Tete province. “I didn’t go to the farm with my husband so that I could drop her off at school. She needed her education.”

When we met Joana again a year later, she had relaxed her vigilance a little: Josina is still in school, now under the watchful gaze of Luisa, who’s not just her best friend but also her niece, though both are eight now. Several older neighbourhood boys also accompany Josina to school, where she is protected and loved.

It wasn’t always this way: during her first school days three years ago, other students ostracized her and called her hurtful names. But her teacher, Revina, confronted those students and held a series of workshops on albinism for both teachers and classmates. She explained what albinism is and why her peers should protect and respect Josina. And of course Luisa, born just a week after, and who shares her bedroom, would sit next to Josina and help her write notes.

“I was sad a little when I had to repeat Grade 2 because I’m no longer with Luisa. We still see each other at recess and after school. She is my best friend. She is always asking if I’m okay, she helps me read after school and she looks after me,” Josina told us. “But my teacher also helps me at school a lot – she puts my desk in front of the board, explains things to me so that I understand.”

That teacher, Revina, is committed to helping Josina succeed, despite her struggles in Grade 2 with a different teacher. She allows her extra time to complete assignments, and pays her special attention despite having 70 more students. Revina also volunteers for Azemap, a local, volunteer-run non-profit that supports persons living with albinism in Tete province, distributing skin cream, sun block, eye drops, and soap for sensitive skin to Josina and other kids with albinism.

Despite widespread beliefs in many communities that albinism is a curse that brings shame on a family, Josina’s family and her community are standing by her. She was born the last of Joana’s six children, and the only one with albinism. Joana was shocked when she saw newborn Josina’s white complexion; the nurses explained that her baby was born with albinism, which Joana knew little about. She had heard long ago from her uncle that her grandmother had once birthed a white child, and only the adults were permitted to see the baby. Her uncle told her that the baby later disappeared, although her grandmother disputed the story.

Many fathers here abandon their wives after blaming them for a child with albinism, which they think is due to infidelity or an “impure” blood line, but Josina’s father accepted her. He has travelled to different parts of Mozambique as a soldier and had seen people with albinism, who are estimated to number between 20,000 and 30,000 in the country, although no government census exists.

Too many other stories we heard from children with albinism in Tete province were filled with discrimination and despair.

Joao, who is now 19, stopped going to class in 2015 because he was afraid of being kidnapped on the five-kilometer walk to and from school. “I love school, but I'm afraid to go,” he told us.

Some people would follow him; others would call him dinheiro (money) and negócio (business), referring to their misperception that his body parts could bring value. Joao’s family went to the police after assailants allegedly tried to recruit his friend to help abduct him. They filed a police report but nobody was arrested.

His fear is exacerbated by recent kidnappings in the region, which he hears about in the news. He works the fields with his father, planting and cultivating beans and maize. It is hard and painful work, because the sun hurts his skin. Joao is also too frightened to go to the market alone. “My dream was to become a teacher. It's good work. I still have the dream but I can't go to school.”

At the peak of the abductions and physical attacks in 2015, the UN’s Independent Expert on the enjoyment of human rights by persons with albinism received reports from civil society of over 100 attacks in Mozambique that year alone. According to her, belief in witchcraft is one of the root causes, with assailants believing that the body parts of persons with albinism can produce wealth and good luck when used as ingredients in potions.

Although reports of physical attacks against and abductions of people with albinism have receded since then, the families of children with albinism still live in fear, some keeping their children out of school. The most recent attack reportedly happened in May 2019 when an 11-year-old girl was abducted in Murrupula District in Nampula Province and later found dead with her limbs cut off.

The culture of fear persists even though reports of attacks have since receded. According to local albinism advocates, many persons with albinism try to avoid leaving home, and avoid walking alone, perceiving other people as a threat.

Luisinho, 26, quit his job selling second-hand clothes on the street because he could not afford sunscreen and his skin would burn. He tries to find work as a singer.

Despite recent efforts by Mozambique’s government and civil society organizations to sensitize the general public, progress in understanding albinism remains fragile. In rural areas, people do not have electricity and don’t receive television and radio messages. In these communities, people with albinism say they continue to face stigma and rejection, sometimes from their own families.

All of the children living with albinism that we met in Tete province said they experienced some discrimination at school and in their communities, mostly name-calling. Because of the shame and negative perceptions, parents in rural areas tend to isolate their children with albinism, so their integration usually starts on their first day of school. Students face jeers and insults from other kids, who often refuse to touch, sit next to, or play with them. Albinism advocates in Maputo told us that such extreme first encounters tend to further erode self-esteem, limiting their ability to excel at school and leading to difficulties in finding work later in life, as well exacerbating mental health conditions, including depression.

Fatima dropped out of Grade 5 after insensitive 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 complained to the school but it only made things worse. “When the teacher would say those things to me, it allowed the students to do the same. There were no consequences for any of them.”

The United Nations Independent Expert on the enjoyment of human rights by persons with albinism noted that: “The complexity and uniqueness of the condition means that their experiences significantly and simultaneously touch on several human rights issues including, but not limited to, discrimination based on color, discrimination based on disability, specific needs in terms of access to education and enjoyment of the highest standards of health, harmful practices, violence including killings and ritual attacks, trade and trafficking of body parts for witchcraft purposes, infanticide and abandonment of children.”

And yet, many of the country’s education officials, including teachers and principals, do not recognize that many children with albinism have a disability: low vision.

With help from Azemap, we interviewed 42 people with albinism and their relatives in Mozambique, as well as community leaders, teachers, school principals, albinism advocates and government officials, between July 2018 and May 2019. In order to protect their privacy and shield them from potential reprisals, we changed some names or used only first names. We focused primarily on schooling because ensuring free, safe, and dignified access to education is key to upholding the human rights of people living with albinism and to combatting the stereotypes and stigma that expose them to mistreatment and fatal risk.

Cesaria, a part-time teacher in the city of Tete who leads the local branch of Amor à Vida, a national group promoting the human rights of people with albinism, noted the tremendous challenges that children with albinism face even if their parents allow them to attend school. She pointed out bullying and harassment by other students and even teachers, and that schools rarely make accommodations for children with albinism, such as providing them with large print textbooks, extra time for exams or seating next to the chalkboard.

Most are also hypersensitive to sunlight, yet teachers often make them participate in physical education classes outside without proper protection from the sun, such as hats, sleeves or sunscreen. Because of all these barriers, children with albinism lag far behind their classmates, she said.

Cesaria knows that stigma and discrimination firsthand. When she was born, her father walked out on the family; and she dropped out of high school after being followed by men she feared would kidnap her. She was so frightened that she never returned to finish the classes she needed to graduate. Even now, Cesaria has overheard her students wishing for a teacher without albinism. Outside of class, she is often called “money” and “business” and insulted in public: “Look at this business; if we take her, we can make some money.” Some students and parents initially refused to shake her hand or sit next to her, for fear of “catching” albinism.

“When people say terrible things to me, I never answer,” she told us. “I wonder why they can't they treat me like a normal person. I'm always afraid to go out of the house.”

Despite her fears, Cesaria dreams of becoming a full-time teacher: “I love what I'm doing; everyone should have a good life free from discrimination. The government must do something to take care of our basic necessities for education, provide equality also for employment, and prevent discrimination. They should protect our equality and rights. We need to have the same protections as everyone else.”

It is a perpetual struggle for people with albinism. Even after they die, there is no peace: their graves are at risk of exhumation by individuals or gangs attempting to obtain body parts to sell to witch doctors. Flavia Pinto’s father died in 2015 at age 52, likely due to health complications related to his albinism. Almost a year later, thieves broke open his grave and stole parts of his body.

“My father was a hero. It’s a cliché that everyone says, but he has this heroic quality,” Flavia told us. “What I learned from him is this contribution you have for your neighbour, the honesty, the respect you have for your neighbour regardless of color, race, religion ... he suffered many injustices.”

In his honor, Flavia and her family founded Azemap, which now helps more than 200 people in Tete province access critical skincare products. Because of the spike in murders and kidnappings, people are more afraid, she said. “When we go visit them, we have to wear T-shirts like these to identify that we are part of the organization.”

Her organization performs a critical function in a country where the government has taken positive steps, but has not done enough, to prioritize the needs of people living with albinism. Azemap is working with officials to create a public awareness campaign and get kids back to school. “They already suffer discrimination, and, to be illiterate is an even worse situation,” Flavia said, recalling her educated father as a model. “We, as an organization, we must fight for these children to have an education, because only an education will grant them more information on a global level, so that they have more information about the rights they have and the obligations they have, as carriers of albinism.”

The more people living with albinism understand their rights, the more likely they will demand action from their government – including to increase public awareness and dispel the deadly and discriminatory myths, train teachers, and equip schools to meet the needs of children with albinism.

For now, Flavia said, it’s up to families to build the foundation and teach children with albinism that they have the same rights as anyone else. “They will hear people point fingers, but they need to remain strong and tall,” she said. “As parents, we must help them be strong people outside.”

It’s a philosophy she’s applying at home. In 2017, Azemap learned of a couple arrested for trying to sell their toddler, Elisio, who has albinism. His father was convicted and sentenced to eight years in prison and his mother was acquitted. Several months later she abandoned her son, who was put in an orphanage. In February, Elisio’s grandmother brought him to Flavia and asked her to raise him. “The paperwork was submitted to the court yesterday,” Flavia told us. “I’m going to be his mom!”

Flavia, who has no other children, had helped to care for Elisio while he was in the orphanage, at the request of local officials. “It’s so exciting, because I have a connection with this child from the first time I saw him … so him coming back to me, a second time, this second chance, I think it has to do with destiny, it has to do with God, wanting me to be his mother,” she continued. “It’s a challenge that I accept with great pleasure. And I know that I’m going to do my best so that he’s a healthy and happy child.”

And there’s a good chance that Flavia will succeed. Josina’s story also shows that with a little support from groups – together with the government, educators, family, and community leaders – the lives of children with albinism can really be improved. It may take a village, but the state also has its responsibility: the Mozambique government has an obligation under international human rights standards to ensure that these children have the same opportunities as everyone else to learn and thrive. Josina, Elisio, and so many other children with albinism are counting on it.

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