Local Brewer with Albinism Erodes Stigma with Unforgettable Beer

KIRUMBA, DEMOCRATIC REPUBLIC OF CONGO — The bar is small and constructed from plastic sheeting. Inside, customers are greeted by the aroma of mandale, a locally-cherished style of beer, and smiles from the owner, who has white braids.

Denise Kavugho, 30, is a single mother who did not get very far in school. She attended primary school for a while, but she dropped out because of the way people treated her.

“Everybody was looking at me,” she says. “Some pupils used to laugh at me while others ran away from me. At school, there were many times I was left alone on the school bench.”

Kavugho has albinism, a genetic condition that affects the body’s ability to produce melanin, which gives color to hair, skin and eyes.

She struggled at home, too. Kavugho’s eyes ached constantly and she had poor vision, a common side effect for people with albinism.

“And since my biological father, who was a driver, abandoned me because of my albinism, my mother could not afford to buy spectacles for me,” she says.

Her younger brother Evariste Kasereka, 28, who also has albinism, faced the same problems.

“My younger brother, Evariste, and I were always together because everybody ran away from us,” she says.

Both kids dropped out of primary school to work in the fields to earn money and to escape bullying.

“We decided to abandon school to work in the fields. On the way to the fields, all eyes of passers-by were fixed on us. And once in the fields, we suffered the burn of the scorching rays of the sun,” Kavugho says.

But things changed for Kavugho and her brother when she learned the secret of making mandale from fermented maize. People prefer mandale because, at 200 Congolese francs (22 cents) per cup, it’s cheaper than imported beer and they like the taste.

Over the last 15 years, Kavugho became well-known in Kirumba as the area’s best mandale brewer. She has perfected a secret recipe with a distinct flavor, and customers say her mandale doesn’t leave them feeling bloated.

“Before, it was very difficult for me, since people feared to come to my bar to take the drink brewed by an albino,” she says remembering the early days before her famous recipe caught the attention of locals. “However, the reputation of my drink changed the whole scenario and now most people come to my bar.”

Beer, she says, has turned her life around.

“My trade, the beer, is important because it has given me value again. More importantly, for the first time, I am firmly integrated into society,” she says.

Kavugho says she saves 10,000 francs ($11) every week. That’s a powerful sum, given that the average gross national income per capita in DRC was just $380 in 2014, according to current World Bank data.

Kanyere Bayele, Kavugho’s older sister who does not have albinism, says her sister’s courage has changed the social balance of the community.

“Today I am proud of my younger sister, her strength and courage is an inspiration for me,” Bayele says.

Statistics about albinism vary greatly. One in about every 20,000 people is born with albinism, according to the U.S. National Library of Medicine. An estimated one in 5,000 to 15,000 Africans are born with the condition, according to survey results published in 2006 by BMC Public Health. The survey was conducted with the World Health Organization.

It’s in Africa where people with albinism face the most extreme forms of discrimination. One 2007 UNDP study conducted in DRC found that nearly half of parents of children with albinism felt ashamed when they discovered their child had albinism.

In DRC, some even fear eating food that has been prepared by people with albinism because of a belief that people with the condition have ties to witchcraft.

In Kirumba, Jean Paluku, the deputy coordinator of the local branch of Good Samaritan, a human rights organization, says there are 10 people with albinism in that small community. Four of those 10 are employed: One is a gas pump attendant and one is a telephone repairman. Kavugho works at her bar, and her brother is a cargo handler. The others, he says, suffer from low self-esteem and discrimination, which prevents them from working.

“We are sensitizing the population to treat the albinos as any other person in the society,” Paluku adds.

Kavugho, through her beer, has become an important person in the Kirumba community, says Kambale Munduvuyira, a mechanic and frequent customer to the bar.

“Her work is very crucial to the population because after having earned some [money], she in turn buys for the goods she needs from a neighbor. This promotes social and economic life,” Munduvuyira says.

He says he feared people with albinism before he met Kavugho. Now, he’s comfortable buying a drink from her.

Deshine Makembe, a cargo handler and customer, agrees that Kavugho and her brother have become fixtures in the community.

“Like any other member of the group, they participate in all the activities,” she says.

Despite the dramatic social changes Kavugho’s bar has affected, some local people are still hesitant to buy food and drinks from her.

Georgine Kahindo, a student and local resident, acknowledges that Kavugho has forged a place in the local community, but deep-rooted beliefs about people with albinism make her cautious about what she consumes at the bar.

“I feel some kind of reluctance to share with her food on the same plate or to eat the food that [a person with albinism] has peeled, for instance a green banana, because some elders say that they carry malediction,” she says referring to a common belief that people with albinism have ties to witchcraft.

But for others, beliefs are changing, even if slowly.

Justine Kavugho, who is not related to Denise Kavugho, says she believes some of the stories about people with albinism.

“Their skin is light and fragile and their color may remain on any object that they touch,” she says. “So I cannot even dare to touch their hands. But Denise lives in my neighborhood and I do greet her at a distance.”

Gisele Kavira, a local trader, says she once feared people with albinism too, but Kavugho has changed that.

“I use to fear them because it was said that they disappear. And it was rumored that whoever sees them again after their disappearance, will die,” she says.

But today, she says, she doesn’t believe that anymore.

“I always see Denise who sells mandale of such high quality,” she says. “We often take that drink without any reservation. She is helping herself while helping us also.”

Despite Denise Kavugho’s business success, she worries that her 4-year-old son, who does not have albinism, will still be affected by stigma related to her condition.

But through selling mandale, she says she’ll change perceptions, one beer at a time.

“My dearest wish is to make all people understand that to be an albino is not a curse,” she says.

Ndayaho Sylvestre, GPJ, translated this article from French.