Tanzanians counter myths, stigma of albinism

At risk of violent attack and cancer, those with the condition just want to be treated like everyone else

Sep 28, 2015 by and

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CHITARE, Tanzania — In a Mennonite church packed with about 180 people, workshop facilitator Specioza Kifutu guided 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.

During an MCC-supported village workshop in Chitare, Tanzania, Sister Martha Mganga, founder of MCC partner Albino Peacemakers, leads a discussion time. In front with her is Ismaimaili Maila. — Terry Morton/MCC

During an MCC-supported village workshop in Chitare, Tanzania, Sister Martha Mganga, founder of MCC partner Albino Peacemakers, leads a discussion time. In front with her is Ismaimaili Maila. — Terry Morton/MCC

The answers were 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. Babies with albinism are sometimes killed at birth or left to die.

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. Youth almost always develop 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.

The church is called to this work — to see beyond what the community is saying about people with albinism and to care for all, said Jumanne Magiri, general secretary of the Tanzania Mennonite Church.

“Who is my neighbor?” he said, 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, surveyed 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 said.

Information, not myth

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, said facilitator Kifutu, who is the program manager.

“It’s only knowledge that will be the solution,” she said.


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