NAIROBI, Kenya (GPI)-- 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.
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