Isaac Mwaura speaks at a press conference in Kenya’s Parliament.
NAIROBI, KENYA – When a mother gives birth to a boy in the Kikuyu tribe of Kenya’s Central province, women traditionally ululate five times to welcome him. But when Isaac Maigua Mwaura was born 31 years ago in the village of Kangengo, his community fell silent, he says.
Mwaura was born with albinism, which shocked and confused the community, he says. A lack of pigmentation in the eyes, skin and hair characterizes the genetic condition, which villagers knew little about.
“My mother tells me that I became the village spectacle,” Mwaura says. “My father said I was not his child, and that in his family’s history, no one had my skin color.”
The color of his skin even caused his father to abandon the family.
“He divorced my mother,” Mwaura says. “We had to move to my grandmother’s home, where my elder brother and I grew up.”
But Mwaura’s days of isolation are behind him. Now, he speaks from the lounge of Kenya’s Parliament as the country’s first member of Parliament with albinism.
In March 2013, the Orange Democratic Movement, a Kenyan political party, nominated Mwaura for a seat in the National Assembly, the lower house of Parliament.
Kenya’s Constitution reserves 12 seats in the National Assembly for members representing special interests, including young people and people with disabilities. Political parties nominate members to fill these seats.
Statistics defining the number of people living with albinism here vary widely. Mwaura estimates that there are between 30,000 people and 300,000 people in Kenya living with albinism.
Mwaura, who is also a founder and former vice chairman of the Albinism Society of Kenya, says a majority of the population is either blind or visually impaired as a result of the disease. The local community prefers “living with albinism” to “albinos,” deeming the latter derogatory, Mwaura says.
Five years ago, Kenyans living with albinism feared ritual killings because people used their body parts for witchcraft, Mwaura says. But now, society is beginning to see them differently, and he plans to use his new role to accelerate this change.
Mwaura says his nomination to Parliament is a milestone in his lifelong campaign to educate society about albinism.
“My nomination has brought a new narrative about us: that we can be leaders and that we can contribute to national discourse,” he says.
Mwaura has already spent much of his life attempting to change the discourse about albinism in Kenya. Growing up with little understanding of albinism was difficult, as few people knew the facts about the condition, he says.
“I asked myself many questions when I realized that I was different from other children,” he says. “In fact, I thought it was something I would grow out of.”
People in the village called him names and talked about him in his presence, believing that he could not understand them because he looked like a foreigner, he says.
“Some people think we are ignorant,” he says. “Sometimes, they sell things expensively to us, thinking that we are foreigners.”
Anthony Kangethe, 30, who grew up in Kangengo with Mwaura, says that Mwaura faced frequent teasing and misunderstanding.
“Most children used to call him ‘mzungu,’” he says, referring to a Swahili term commonly used to denote whites or foreigners. “But as I grew up, I came to understand his skin condition.”
Mwaura attended a boarding school for visually impaired children, where he fit in with other students also living with albinism. Villagers had told his mother that she should not even have bothered sending Mwaura to school, as children like him could not pass exams, he says.
“But I proved them wrong, as I was always top of my class, and I went all the way to university,” he says.
It was at Kenyatta University in Nairobi, Kenya’s capital, that Mwaura realized his political aspirations and his capacity to represent others. During his first year, students elected him to the Kenyatta University Students Association, thanks in part to his slogan: “You are special. I am special. Vote for someone special.”
After university, he took his advocacy work to a national level. The National Council for Persons with Disabilities, a government entity, appointed him to its board in 2004, and he helped found the Albinism Society of Kenya in 2006.
Alex Munyere, a former chairman of the Albinism Society of Kenya who currently works for the National Council for People with Disabilities, says in a phone interview that Mwaura’s success is inspiring.
“Mwaura’s nomination is a big inspiration to us,” says Munyere, who also has albinism. “It encourages us to look beyond our disability and become what we want to be.”
In particular, young people living with albinism look up to Mwaura and trust him to continue educating society at the national level, Munyere says.
“We are confident that he will be able to push for laws that will ensure more inclusion of people living with albinism and other forms of disabilities in national matters,” he says.
Mwaura’s success as an advocate and educator does not surprise Kangethe, he says.
“I could see leadership in him since we were young boys,” he says. “Whenever he speaks, people listen.”
Although his nomination represents a breakthrough for people living with albinism, Mwaura says there is still work to do to educate others on the condition.
During a debate in May, one of his colleagues in Parliament said he looked like a cowboy because of the hat he wore to reduce the light in his eyes. The remark angered him, he says.
“He was ignorant of my condition, and he apologized later, ” Mwaura says.
Attitudes toward people with albinism are already changing, he says.
Villagers who previously would not approach Mwaura now rush to shake his hand, he says.
“They call my mother ‘Mama Mheshimiwa,’” he says, using a Swahili title that means “Honorable Member of Parliament’s Mother.” “She has been vindicated.”
Encouraged, Mwaura is already planning to run for an elective seat in Parliament in 2017, and he is confident that he will win.
“I couldn’t contest in the last election because of lack of resources, and people didn’t know me as a politician,” he says. “But in 2017, I will be ready to go for an elective seat.”
