Saturday is the first International Albinism Awareness Day, declared by the United Nations, because 40 years ago a Canadian boy was bullied for having poor eyesight, pale skin, and white hair from a genetic condition as old as humanity.
That boy with albinism survived the taunts and punches. But decades later, Peter Ash saw reports of others who did not survive their attackers. In parts of sub-Saharan Africa, Ash learned, people with albinism are considered ghost spirits, called zeru zeru or “nothingness.” They are thought stupid or evil. They are deemed both less and more than human. (Read about rising violence against Tanzania's albinos.)
Their body parts are coveted for witch-doctor potions that promise riches, bounteous harvests, and election victories. An albino arm might sell for $4,000 and an entire body—limbs, genitals, ears, tongue and nose—can fetch up to $75,000, according to the International Federation of Red Cross and Red Crescent Societies.
In Tanzania, the first African country Ash visited, he met the family of a 6-year-old girl whose assailants hacked off her arms and her legs, then slit her throat and cut out her tongue. (Pictures go inside the lives of Tanzania's albinos.)
“My wife and I, fortunate to have done well, had been wondering how we could serve,” the Vancouver investor recalls. “When I got to Tanzania, I felt truly called.”
He had worked for a time as a minister and counselor before changing his career to commercial real estate investor. But he is now best known as probably the world’s leading activist for albinism education, inclusion and protection. By lobbying the United Nations, he helped create International Albinism Awareness Day, which will occur each June 13.
Rounding Up Children
Albinism is most common—and most feared—in sub-Saharan Africa. In Tanzania, one in about 1,400 children are born with it.
In North America and Europe, the rate is far lower, about one in 20,000. A parent may have normal skin and hair pigmentation and mate with a partner who looks the same but, if each carries the recessive gene for albinism, a child will be born with the condition. Albinos, or people with albinism, the term they prefer, suffer reduced eyesight and increased risk of skin cancer, but the condition does not affect intellect or ability.
A nonprofit organization Ash formed, called Under the Same Sun, reports that at least 378 people with albinism—about two-thirds of them children—have been murdered or maimed in the past 15 years in 25 sub-Saharan nations, almost half in Tanzania.
“We’ve seen an increase of killings in people with albinism over and over again in the run-up to elections,” Ash says, pleased that a government minister this month warned politicians to avoid witchcraft. Girls and women with albinism are also raped by men who believe the myth that their HIV can be cured that way.
In 2008, the Tanzanian government, embarrassed by reports of attacks, rounded up hundreds of pale African children and shipped them to nine schools already designated for children with disabilities, including blindness. (People with albinism are often declared legally blind and, in adulthood, typically do not drive.)
The photos above were taken at one such school, the Kabanga Protectorate Center.
'I Always Travel With Security'
Under the Same Sun considers those schools to be overcrowded and ineffective. Instead, it supports the education of 320 children with albinism, from kindergarten through college, at private schools whose staffs are trained to understand albinism. Its aim is to nurture such children into productive members of society, working in roles that will help change societal attitudes toward the condition.
“We already have a young woman economist working in the prime minister’s office,” Ash tells me. “We have woman at Barclay’s Bank. And we have a teacher.” Two members of the nation’s National Assembly also have albinism; one was appointed, one elected in 2010.
Among Under the Same Sun’s Tanzanian staff are 10 people with albinism who travel southern Africa to educate. Ash is in Tanzania to participate in festivities for the awareness day, but carefully.
In Tanzania, which he has visited 18 times since 2008, “My face has been in every newspaper and on every TV station, and I’ve made some very strong statements” against lax government response to the attacks. So, he says, “I always travel with security.”
In rural areas of other nations, including China and India, babies with albinism are often considered unlucky and are abandoned to orphanages or kicked into the streets to beg. Last month in India, a first-grade teacher told a girl’s mother to keep her child home, explaining that “she is too white so other parents object to her presence and don’t want their children to study with her.”
Ash knows from his parents’ stories that when his older brother Paul was born in 1957, the hospital staff said simply, “Oh, you have a fair-haired child.” That brother was not diagnosed with albinism until his mother noticed his poor eyesight.
Now almost 50, Ash said he still encounters medical professionals clueless about the condition. “Most people,” he says, “have never met someone with albinism.”
Follow Susan Ager on the web.