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.