NAIROBI (Thomson Reuters Foundation) - When Ikponwosa Ero was five years old, she couldn’t walk down the street in Nigeria without being abused for having albinism — a lack of pigmentation in the skin, hair and eyes.
“(In) five minutes, almost 50 people have said something, pulled your skin, pulled your hair or sung (abusive songs) to you,” the United Nations’ first independent expert on albinism said in an interview with the Thomson Reuters Foundation.
“I was wondering why was I born? ... How will I get to my adult years and survive this? I don’t think I can make it.”
People with albinism are frequently shunned, attacked and even killed across Africa. In many countries, their body parts are believed to bring wealth and good luck and are prized in witchcraft for use in charms and magical potions.
Ero’s mother comforted her, telling her that God does not make mistakes, and fought for her to attend school, despite her poor eyesight, a common problem for people with the condition.
“I was often beaten in class when I said I couldn’t see because they (teachers) thought I was lying,” she told a Nairobi news conference, following a meeting with albinism activists from 15 countries across Africa.
Ero got through school by getting another student to copy the exam questions down from the chalkboard for her in exchange for the answers.
She went on to become a lawyer in Canada and, in 2015, the United Nations’ first expert on albinism, a congenital disorder affecting up to one in 15,000 people in sub-Saharan Africa.
Ero’s priority is to end the brutal machete attacks on people with albinism by assailants seeking to use their body parts in witchcraft.
More than 600 attacks have taken place in 26 African countries since 2007, with almost two-thirds of the victims being children, she said.
“There is the witchcraft belief that if the attacks are happening to people while they are alive, then the potion is more powerful,” Ero said.
“They want the person to scream because it’s believed that the scream adds to the potency of the medicines.”
Ero is drawing up an action plan which will use online fundraising to buy iron bars and sturdy locks for the doors of impoverished rural families at risk of attack.
“If this partnership works, give us 20 years and a lot of the attacks will be history,” she said, adding that Malawi recently received funding from the British government for such community protection measures.
Reducing stigma is also key, she said, as many fathers walk out when their wives give birth to a child with albinism.
“My black mother and father were so shocked when I came out,” she said. “They actually had a fight as to who caused this child to look like this.”
Fathers, uncles, aunts and stepmothers are often involved in attacks on children with albinism, she said, leading to underreporting of such crimes.
Ero was accompanied by Isaac Mwaura, Kenya’s first member of parliament with albinism, who organised in October a beauty pageant for people with albinism in Kenya to reduce stigma.
One person with albinism was killed in Kenya last year.
Before his nomination to parliament in 2013, Mwaura successfully lobbied Kenya’s parliament to allocate $1 million to provide people with albinism with sunscreen, hats, long sleeved clothes, eye care and cancer treatment.
Cancer kills most people with albinism before they are 40 years old, Ero said.
Mwaura plans to stand for an elected position in Kenya’s 2017 elections.
“You keep on breaking the glass ceiling,” he said.
“We will not relent.”
Reporting by Katy Migiro @katymigiro; Editing by Katie Nguyen. Please credit the Thomson Reuters Foundation, the charitable arm of Thomson Reuters, that covers humanitarian news, women’s rights, trafficking, property rights and climate change. Visit news.trust.org to see more stories.