MOROGORO, TANZANIA—Richard Costar is worth more dead than alive. Strangers call him “money” or “deal” for the cash they could make by selling his body parts to a witch doctor. On the street he has to be cautious not to travel alone, and even at the age of 22 he feels he must live at home with his uncle, for safety.
Costar is one of the many thousands of Tanzanians born with albinism, in which mutations to genes that normally provide instructions for melanin production leave individuals with little or no natural pigment. The telltale lack of melanin elevates the risk of skin cancer for Costar and others with albinism. But here in this East African country it also leaves him vulnerable to attacks fueled by superstitious beliefs that albinos’ body parts can lead to power and wealth. A rash of more than 100 crimes against individuals with albinism have been reported in the past seven years in Tanzania, according to the Tanzania Albino Society, an advocacy organization.
The United Nations last month issued a report on crimes against people with albinism, noting that in Tanzania alone there had been 72 murders of people with albinism since 2000, only five of which have resulted in successful prosecutions. The report highlighted the challenge of tracing the crimes as well as ferreting out which witch doctors make albino charms and potions and who buys them. In one incident from the report an unidentified individual tried to sell a man with albinism for $250,000. Children’s body parts are particularly prized and can yield thousands of dollars. "Some even believe that the witchcraft ritual is more powerful if the victim screams during the amputation, so body parts are often cut from live victims, especially children,” the U.N. report stated. “The use of children is likely linked to the pursuit of innocence which, it is believed, enhances the potency of the witchcraft ritual.” Children’s physical weakness also makes them vulnerable. Moreover, a widespread belief that individuals with albinism cannot die and that they may just “disappear” contributes to a lack of empathy for the crimes.
The genetic condition occurs rarely globally—only one in 20,000 individuals have albinism—but the numbers are much greater in Tanzania and its neighboring countries. In Tanzania approximately one in 2,000 people are born with albinism. A pigment deficit under the sub-Saharan African sun makes affected individuals particularly vulnerable to sun damage and to skin cancer, a top killer of people with albinism here. Tanzanians with albinism rarely live past age 50.
The condition also leads to poor vision and hearing, subjecting many individuals with albinism to a vicious cycle of poverty. Their skin vulnerability makes farm work (which employs about three quarters of the country) difficult, and their poor eyesight means they often struggle in school.
To make matters worse Tanzania has a chronic shortage of both specialists and resources to treat issues associated with albinism. Eyeglasses remain out of reach for many. Glasses would cost somewhere around 70,000 to 100,000 Tanzanian shillings ($44 to $63), but beyond the cost lies another obstacle: a scarcity of the required lens type, says Shukuru Majlyo, an optometrist with a practice in the city of Iringa. And even with glasses many people still would not have optimal vision, because melanin plays a key role in the development of certain optical nerves.
There is also a worrying shortage of dermatologists in this country of 48 million people, according to Alfred Naburi, a dermatology officer at Kilimanjaro Christian Medical Center (KCMC). The official government policy is that people with disabilities can receive care for free—especially crucial when it comes to paying for pricey skin cancer therapy—but in reality that often is not the case, say Naburi and others. Some people may be turned away due to lack of supplies. Moreover, the challenge of getting to distant medical facilities often means people seek care when it is already too late.
Signs of progress
Traveling around the country, it is clear that the situation for albinos varies drastically across different regions. In the northern city of Moshi, near the Regional Dermatology Training Center housed at KCMC, individuals with albinism are relatively safe, both from attack and sun damage, Naburi says. He and colleagues have been doing albinism outreach there since 1993. Driving down the street, a visitor can see people with albinism decked out in protective long sleeves and wide-brimmed hats, walking along the road or working on their farms.
In July Naburi’s facility became the first to produce a Tanzanian-made sunscreen. The local manufacture of sunblock slices the cost from around $25, for imported lotion, to around $5, according to Mafalda Soto Valdes, the project manager for the KCMC’s sunscreen production. The low cost of manufacture allows the operation, which is supported by donations and supplied with raw materials by the chemical company BASF, to distribute sunscreen for free.
Naburi says that in recent years conditions have improved for albinos, as anecdotally evidenced by increasing numbers of marriages between people with and without albinism. Three years ago Tanzania also elected its first albinotic member of parliament, a man who spoke publicly about fears for his safety. In July KCMC started offering vocational training for people with the condition, bringing in sewing machines for tailoring with plans to expand to cobbler work as well.
Still, some families with albinotic children in Tanzania do not send them to school, and teachers do not always provide extra assistance to students who need it, Naburi says. For security reasons, some parents also may send their children to special protection centers or orphanages.
The situation remains particularly dire in part of the northern part of the country. Near Lake Victoria fishermen are known to weave albinos’ hair into their fishing nets in the hopes of improving their catches. Witchcraft beliefs are more entrenched in that part of the country, making individuals with albinism particularly susceptible to attacks. “When I was growing up it was not like this. It was just stigma, but not people coming to cut bodies,” says Zihada Msembo, 60, a leader of the Tanzania Albino Society, during an interview elsewhere in the country. In the past five years, she says, the attacks in Tanzania have gotten worse. But what has prompted the new attacks remains unknown. Whereas the attacks are most prevalent in the so-called “Lake Zone,” Nsebo says that “people travel to hunt for albinos” throughout the country.
Ironically, the attacks have actually helped combat stigma by raising the profile of albinism in the media and helping to dispel mystical misconceptions, including the idea that albinos are immortal. Local chapters of the Tanzania Albino Society also conduct outreach efforts, even forming a traveling dance troupe.
Janet Anatoli is one member of the dance troupe. Although she is only 28, her skin, spotted from the sun, makes her look much older. She draws pink eyebrows on her face (her husband likes them) and wears a wide-brimmed hat to ward off the sun. She and her husband both have albinism, but none of their three children inherited the recessive trait. For that, she is grateful, because they will not have to face the same challenges she did in school. She says she was beaten by her teacher for failing to take notes when she could not see the blackboard.
“You can’t move freely like other people,” says Zakia Matimbwa, 37, lamenting that she would like to travel and dance, but she is scared to travel alone and sometimes needs to be escorted. Matimbwa says she worries she will get skin cancer and will not live to see her kids grow up. Already, she has had several moles removed.
As for Costar, he does not know when—or if—he will be able to leave his uncle’s home. But if he does, he says he will live with other relatives, for protection.
Stigma and loneliness remain central pillars in his life; people often do not want to touch him. He cannot drive a car because of his poor eyesight. But looking down at hands that remain free of sun damage, he says he knows he is lucky. A tourist saw him on the street as a toddler and told his parents about albinism, loading them up with a free supply of sunblock before the family found a local donation center. But for Costar and many other albinos in Tanzania, the danger remains—both in the light and in the dark.
Dina Fine Maron reported this story in Tanzania as a fellow with the International Reporting Project (IRP).