Congolese albinos refugees in the Rwamwanja camp (Uganda)
Text and photos J. Ignacio Martínez Rodríguezfrom Rwamwanja (Uganda)
The violence in eastern Democratic Republic of the Congo has forced thousands of families to leave their homes and leave their countries. Many of them have reached the Rwamwanja refugee camp, in Uganda, where security measures have been reinforced to protect people with albinism.
When, ten years ago, Issa Atibu, a 39-year-old man, became a father, his wife brought two albino twin girls into the world. He did so in the province of South Kivu, in the eastern part of the Democratic Republic of the Congo. But when he arrived at the Rwamwanja refugee camp, in southwestern Uganda, he did so accompanied by only one of them. Now he tells his story with eyes full of tears sitting on a bench in the patio of what has been his home since then, a small plot in that settlement that has a couple of trees in a battered garden and a house made of adobe and sheet metal. «Sometimes my girls slept separately. One of those nights, a group of people attacked my house, entered the room where one of them was and cut off her arm and head. We heard her scream, but by the time we wanted to do something it was too late. The police later told us that they wanted to sell those parts of his body,” he says.
Firdaus Atibu, the other girl, the one who survived, who is now 10 years old, listens to what her father says, nods every so often and looks at him without adding anything. Issa continues: “That’s why we decided to escape. She, three other sisters and I came here. But the countryside is not a very safe place either. There continues to be persecution, discrimination. I’m still afraid. I need people to always accompany my daughter. To school, to the doctor… Everywhere.
The Rwamwanja camp was opened in 1964 to welcome Rwandan refugees and closed in 1995 with the repatriation of its last inhabitants. Years later, in 2012, it was reopened to shelter thousands of people fleeing the violence in the two Kivus provinces, in the Democratic Republic of the Congo. According to statistics from the United Nations Refugee Agency (UNHCR), more than 82,000 people live in the settlement, of which 82% are women and children. Although there is a Rwandan and a South Sudanese community, the vast majority, more than 98%, are of Congolese nationality, a nation devastated by continuous conflicts. On its website, UNHCR indicates that there are 6.3 million internally displaced people in this country. In addition, almost a million Congolese seek refuge in other African states. In Rwamwanja, there is also an area with reinforced security for about 40 families with at least one albino member.
Tulipawa Mayani, a 29-year-old woman, arrived in Rwamwanja from South Kivu. She did it accompanied by her four children. The oldest, Junior, who is now 12 years old, is albino. And their last baby, Juliana, who was born in the countryside two years ago, too. «Junior was kidnapped when he was just three years old. Two men put him in a backpack and tried to take him away, but the police discovered them. Then I went to the Red Cross, I told them what had happened and they organized my trip here,” he says. And he also says that life in the settlement is difficult, that UNHCR only gives six kilos of corn, three of beans and some cooking oil per person per month, and that this amount is insufficient. The boy adds: «Some classmates at school have bitten me. Others prefer not to use the same chair as me or leave me alone. “My mom told me that maybe it would be better if I never went to school again.”
Always in danger
Psychiatrist and dermatologist Gaylord Inena Wa Inena directs the Corbetta association, focused on defending the rights of people with albinism in the Democratic Republic of the Congo. He says: “They are in danger, especially those in rural areas and in the eastern part of the country. It is due to limited knowledge about albinism among the population and distorted beliefs that albinos possess some special power in parts of their body. “This has been aggravated by the increase in the level of general insecurity in that area and the influence of citizens from neighboring nations, where the situation is worse.” Inena Wa Inena explains that problems usually begin at birth and can last a lifetime. «There are men who reject the baby and accuse the mother of cheating, so they withdraw their financial support. At school, albinos suffer rejection, stigma and poor performance due to poor vision, which is why they often drop out. And in adulthood they have difficulties finding work and even getting married.
This vicious circle, which perpetuates poverty among albinos, is often seasoned with large doses of violence. Corbetta has documented several cases, both of attacks and of exhumation of bodies to trade the bones. The doctor continues: «They hunt them to sell parts of their bodies. And defenders of people with albinism like me also put ourselves in danger by reporting these cases. That is why many families flee to other places where they feel safer, such as the Rwamwanja refugee camp.
Cancer and climate change
But there is another strong enemy for people with albinism: the sun. When suffering from a deficit in the production of melanin – which translates into the absence of pigmentation in the hair, skin, eyes or all of them at the same time – the sun’s rays are extremely harmful. Inena Wa Inena says that it is common for people born with albinism in the Democratic Republic of the Congo to die from skin cancer. “80% of albinos here do not reach the age of 40 and that is the main cause of death,” he explains. And those living in the Rwamwanja refugee camp are no exception. This doctor has been to the settlement on several occasions treating patients with this serious injury, and comments on this: «In 2023, the number of people with precancerous lesions was already around 37% and four of them have developed cancer. ».
This aspect may increase in the coming years according to the latest publications from international organizations. The UN stated in October 2023 that climate change is having a dangerous impact on people with albinism around the world, contributing to high death rates from skin cancer in some regions. “In Africa alone, it is estimated that albino people are up to a thousand times more likely to develop skin cancer than those who are not,” says Muluka-Anne Miti-Drummond, an independent expert on albinism. He also advocates for free sunscreen. “It is a medical product that saves lives of people who do not have the means to afford it,” he says. Uganda, where estimates suggest that temperatures will rise by up to one and a half degrees in the next 20 years, is one of the poorest nations in the world: here, some 18 million people, 42% of the country’s total population, must live on less than two euros a day, according to the World Bank.
Anna Mpanya, 14, also knows what it’s like to live surrounded by all these problems. Coming from the Democratic Republic of the Congo, she says she came to Rwamwanja because the war made her father think that both she and her oldest brother, both with albinism, could be in danger. It was five years ago. Now, the firstborn of the Mpanya family is in Kenya; An NGO has paid for his trip to be treated for skin cancer. Anna lives in a humble home with her father and two of her brothers. Philippe, one of them, speaks: «I remember once I dropped a memory card and Anna bent down to pick it up, but she couldn’t see it because of her eye problems. “Everyone was laughing at her.” Adds John, the other: «She is seen in a different way; “You can’t do the same thing as everyone else.” Anna concludes: “My school is not adapted nor can I go out during the day with my friends… I simply do not have the same opportunities.”
Just a few meters from Philippe, John and Anna’s house lives fellow Congolese Machumu Cimanuka with his wife and six of their nine children. Your case is a rare bird: He is 63 years old and has albinism. He arrived in the countryside in 2015 and has lived there since then. «I have been discriminated against since I was little. So much so that my father thought it could be dangerous for me to go to school, so I have never gone,” he recalls. Cimanuka says that he has seen his brother, also with albinism, die from a skin disease. Who saw how a group of men exhumed his grave to get hold of his bones. That, as a refugee, they attacked him with a machete, but he managed to escape. That he reported that and other attacks to the police. And he regrets the poverty that comes from being albino. He concludes: «I don’t have a job, but here you can only work the land and it is dangerous for me to do so. We live on what UNHCR gives us and on the corn and beans that my wife grows. That’s all”.
