JINJA, UGANDA — When Peter Ogik was born, people in his community said his family was cursed.
He has albinism, a rare genetic condition that results in a lack of pigment in skin, hair and eyes. His small community of Lake Victoria’s Kisima Island knew little about the condition, and there were few people with albinism on the island, he says.
Ogik’s parents were loving and protective of him and his younger sister, who was also born with albinism, but the community rejected them.
“Our family was isolated, and people always said my sister and I were a curse,” he says.
Neighbors advised Ogik’s parents against sending him to school, arguing that it was a waste of money because no one would employ a person with albinism. His parents disregarded that advice.
At school, Ogik was often mocked. Teachers and other students didn’t use his name but instead called him Namagoya, a Luganda word describing a person living with albinism, he says.
“No one ever wanted to share a desk or food with me,” he says. “Some teachers even did not want to touch my books.”
Ogik, thanks to support from his parents, went on to attend college, but even as he overcame some of the stigmas of albinism, he knew that many with his condition continued to suffer. Three years ago, while still a social-work student at Kampala University, Ogik founded the Source of the Nile Union of Persons with Albinism. Through the organization, he fights discrimination against people with albinism and educates communities about the condition in an effort to debunk dangerous myths.
Ogik, with two employees, is also leading a push for the Ugandan government to conduct a census of people with albinism so it can ensure that each person with the condition has access to education and support.
Albinism affects people of all races and ethnicities. One of every 17,000 people worldwide has some form of albinism, according to the Vision for Tomorrow Foundation.
It’s not clear how many Ugandans have albinism, because they are usually classified among people with disabilities, says Olive Namutebi, executive director of the Africa Albino Foundation of Uganda.
In most parts of Africa, where little knowledge exists about the condition, myths abound, Ogik says. Some communities, such as the one in which he was raised, consider people with the condition a curse. Others believe that people with albinism do not die and are ghosts.
In Uganda, some people believe that having sex with a person with albinism cures HIV. There have been reports of girls and women with albinism being raped in the country because of this belief, Ogik says, but there are no official data tracking how often that happens.
In some African countries, people with albinism are believed to have magical powers, and they are hunted and killed, their body parts sold to witch doctors. A July report by Under the Same Sun, an organization that works to end discrimination against people with albinism, documents 155 killings and 248 attacks on people with albinism in 25 African countries, including Uganda. The report, which does not state the period it covers, notes that many additional attacks and killings of people with albinism are not reported and documented because they are perpetrated by close family members and friends.
Such incidents are why Namutebi doesn’t support Ogik’s plan for a census of people with albinism. A list of people with albinism could put the lives at risk, she says.
“We have seen what has been happening in countries like Tanzania, where people with albinism are hunted and killed for their body parts,” she says. “Letting our numbers be known out there would motivate evildoers to hunt us down.”
Ogik hopes his work will dispel some of the myths that motivate those crimes. The questions he hears in his community-education sessions reveal that many people still believe them.
“Usually they ask questions like, ‘Do albinos also give birth to normal children? Do they die?’ ” Ogik says.
His organization provides a bottle of sunscreen to each of its 400 members every other month. The sunscreen, a special formula with a higher Sun Protection Factor than regular ones, costs about 170,000 shillings (about $50) – too expensive for many people. The organization also provides lip balms, hats and long-sleeve shirts to members to protect them from harsh sun rays that could cause skin cancer, he says.
In November, the organization started a financial support program for the most vulnerable of its members, including people suffering from extreme skin conditions and young mothers who have been abandoned by their families or the fathers of their children. About 30 people have benefited from this program, Ogik says.
Ogik gets funding from two U.K. organizations: Advantage Africa and ADD International (Action on Disability and Development). Advantage Africa also donates the sunscreen lotion that is distributed to people with albinism.
“Since I first met Ogik in 2012, he has become like a big brother to me,” says Sharik Obbo, a 19-year-old who is one of three volunteers with Ogik’s organization. “I have learned a lot from him, and he inspires many of us.”
Obbo says his paternal grandparents evicted his father from the family land after they learned he had children with albinism.
“The work Peter is doing will help change such attitudes,” Obbo says.
Mary Nabirye, 21, says she is financially independent because the Source of the Nile Union of Persons with Albinism gave her capital to start a business. A single mother of one, Nabirye says she is now able to pay school fees for her 6-year-old daughter.
“I used to do menial work in other people’s households,” Nabirye says. “We would agree on a fee, but after (the work was complete), they would pay me less than what was negotiated because they said I did not need all that money as an albino. Now I do not have to be exploited by anyone; I can make my own money and cater for my needs.”
Fazira Kawuma, vice chairwoman of the National Council for Disability, says Ogik works hard to promote awareness about issues of albinism.
“I believe people are now more aware about albinism in the communities,” she says. “Even those who had bad intentions against albino people now see them as human beings who have rights that should be respected.”
The police also recognize Ogik’s efforts.
“Sensitization is important in ensuring people with albinism report cases of violations of their rights to police and other law-enforcing bodies,” says Abdullah Sabila, the officer in charge of the Criminal Intelligence and Investigations Department at Buwenge Police Station in Jinja District.
Sabila says there is increased awareness in the communities about people with albinism, making life safer for them.
While stigma still exists toward people with albinism, Ogik says that’s slowly changing.
“I want to see a future where people with albinism are fully integrated in society,” he says. “I should not be seen as a person with albinism, but as any other ordinary person.”
Evelyn Lirri translated one interview from Lusoga.
