In a Mennonite church in the rural Tanzanian village of Chitare packed with some 180 people, workshop facilitator Specioza Kifutu guides the crowd in voicing what they’ve heard about those living with albinism — an inherited condition where people lack pigmentation or coloration in their skin, hair and eyes.
The answers are chilling. “The hair of an albino will bless a family.” “If you are touched by an albino, you will become one.” “Why bury albinos? They disappear anyway.”
In Tanzania, the rate of albinism, often accompanied by impaired vision, is one in about 1,400 births — more than 10 times higher than in Canada, the U.S. or European countries.
But Tanzanians with albinism — especially in northwestern regions around Lake Victoria — are at great risk.
They have long been stigmatized and marginalized by their families and communities — with babies with albinism sometimes killed at birth or left to die from neglect.
In addition, over the last several years in northern Tanzania, rumors that the body parts of people with albinism will bring great wealth have led to killings, mutilations and grave robbings; at least 75 people have been murdered since 2000.
On top of that, skin cancer is an ever-present, often-fatal danger, with youth almost always developing precancerous lesions by the time they are 15.
In response, MCC, in partnership with Albino Peacemakers and the Tanzania Mennonite Church and with the support of Rotary International, is bringing workshops on albinism to rural communities throughout the Mara region.
The church is called to this work — to be a prophetic voice, to see beyond what the community is saying about people with albinism and to care for all, says Jumanne Magiri, general secretary of the Tanzania Mennonite Church.
“Who is my neighbor?” he says, referring to the parables of the Good Samaritan and the Good Shepherd. “Your neighbor is somebody who’s in need, and these people need protection.”
As the program began, Terry Morton of Klamath Falls, Ore., MCC Tanzania’s albinism peacebuilding coordinator, remembers surveying people with albinism to see what needs they felt the most strongly.
What topped the list was not addressing violence, despite recent attacks, nor skin cancer, although most people with albinism in Tanzania die of cancer by their 30s.
“It was that people in their communities would know that they are people just like them,” she says.
In areas where people often think only infidelity or a supernatural cause could result in two dark-skinned parents having a child with albinism, workshops teach that albinism is inherited when both parents carry the recessive gene for it.
Participants hear from people living with the condition, including Sister Martha Mganga, founder of Albino Peacemakers who has spent the last 25 years using her experiences with albinism to educate and inspire. A traditional healer helps counter myths that albino body parts have supernatural properties.
Much of the information is new to participants — sometimes even to those with albinism, says facilitator Kifutu, who is the program manager.
Take student Cecilia Dotto Maiga. Before a January 2015 workshop in her home village of Wanyere, no one had talked to her about albinism or the effect sun had on people with the condition.
Realizing the gaps in education, Mganga met with participants living with albinism to talk about skin care.
Afterward, Maiga began using sunscreen and wearing her one long-sleeved shirt as much as possible — changes that have made her skin less red and painful and reduce her chances of developing skin cancer.
Learning a neighbor had threatened to abduct her, workshop leaders helped her family enroll her in a boarding school for blind and visually impaired students, including many with albinism.
Organizers, even as they plan follow-up workshops, are clear that much work remains for communities to become safe places for people with albinism.
It will take time to know whether people’s attitudes and beliefs really have changed, Kifutu notes. And for those living with albinism, especially teens who want to look like their peers, advice to always wear long sleeves or to never be without a hat is tough to follow every single day.
But the facts about albinism are reaching far more people than expected.
The project proposal anticipated each workshop reaching 30 people. Attendance at many has topped 100.
And for Kifutu, that’s a welcome sign that people are eager to learn.
“It’s only knowledge that will be the solution,” she says.
Marla Pierson Lester is managing editor of A Common Place magazine.