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Beyond the pale

The albinos of Tanzania fear being hunted and killed for their 'magical' powers in a country where the majority of people still heed the word of witch doctors, writes Sean Robson. Pictures by Benjamin Schilling

 

 

Bleached by Aids, the product of sex with the ghosts of white people, a result of sex during menstruation and players in a nefarious plot to re-colonise Africa - these are some of the accusations levelled at the albinos of Tanzania.

"When I had my son, I thought I had given birth to a European," laughs Janeth Msuya. But for Msuya's husband it was no laughing matter. "Because the baby was delivered by caesarean, he thought the hospital had switched our child for a mzungu, or white child," says Msuya.

Albinism is a disorder that affects one in 20,000 people worldwide and is caused by the body's inability to produce melanin, which results in patches of pale skin. Albinos are more likely to contract skin cancer and have poor eyesight. In order for albinism to occur, both parents must have the gene, although they may not be albinos themselves.

Msuya's son, Gift, is now a soft-spoken 10-year-old with dreams of becoming an accountant and being able to support his mother. Msuya has divorced Gift's father for reasons, she says, that go beyond their son's albinism. She spends her days selling food on the streets of Arusha, a city close to the Serengeti and Mount Kilimanjaro, while trying to take care of her son and his 14-year-old sister.

"It's a challenge having an albino child. It is difficult because I don't feel free to go and leave Gift alone and he needs protection. Protection in the form of clothes and sunscreen and how he interacts with others. Sometimes there is danger," says Msuya. 

The danger extends beyond the health risks. Seventy-one albino killings have been reported in Tanzania since 2006, and it is assumed many attacks and murders go unreported. The fact that a mere nine people, all of whom are on death row, have been convicted for murdering albinos does little to quell the fears this aggression stirs up.

It is estimated that 60 per cent of Tanzania's population believe in the abilities of traditional healers, or witch doctors, and although the vast majority of those who visit one go in search of medicines to treat colds, blood pressure and other illnesses, some are looking for potions to promote wealth and good fortune. 

The possession of albino body parts - or their use as an ingredient in a potion - is seen by some healers and patients as just such a remedy. Fishermen and miners, for example, make use of small pieces of albino bone and hair woven into their nets and other tools to aid success.

Yet hunters are taking entire legs and arms, and as many limbs as they can get. Estimates vary on the value of an albino leg but it is rumoured one can fetch as much as US$2,000, an astronomical figure given the majority of Tanzanians live on less than US$1 a day. This suggests that those buying the body parts are wealthy, which may explain why no buyers have so far been arrested.

The Tanzanian government placed a ban on traditional healers in January 2009, but that was revoked in September 2010, ostensibly so that the registering and monitoring of healers could take place. Some sceptics have suggested, however, that it was no coincidence the law was revoked a month ahead of a general election.

The issues albinos face in Tanzania are not new. Children born with albinism were once routinely killed at birth.

"Yes it's true," says Dilunga Seif Dilunga, chairman of the Mwanza branch of the Union of Traditional Healers and Midwifery in Tanzania. "There was that belief that when a woman gave birth to an albino, the midwife would kill it, but now ?we have educated the midwives on how to handle these situations."

Cases of relatives wanting to harm an albino child still occur, though, he says. 

At 78 years old, Mabula Fimbo has seen his share of loss and heartache, but nothing could have prepared him for the tragedy that befell his family in 2009. One December night, Fimbo woke to the sound of his son screaming. Men had broken in and attacked his five-year-old granddaughter, Miriam, who was an albino. They slit her throat, catching the blood in a bowl, which they drank from before hacking off the little girl's legs and making their escape.

Fearing grave robbers, the family buried Miriam without fanfare inside their house; her grandfather now sleeps in a bed built on top of her tomb.

"After her death, people were telling me that the bones have richness and can make somebody rich if you use them with other mixtures of herbs and potions," says Fimbo, a tall, proud man who does not share his grief easily.

"When I was young, meeting someone with albinism was lucky and not a regular occurrence; yet if you told your parents they would tell you to keep quiet about it," Fimbo says. "Albinos were also being buried secretly then; this is according to the culture."

Another of Fimbo's seven grandchildren, nine-year-old Manyasi, is also an albino. The death of Miriam galvanised the local government and Manyasi was removed from the family home and placed in a boarding school many miles away.

"When Manyasi was born I took it reluctantly. I was not sure if this was a blessing, [a sign of ] good luck for our family. I advised the parents to take it easy," says Fimbo, who had been warned by his own greatgrandmother that albinism existed in the family. Neighbours told Fimbo he'd been blessed when his first albino grandchild was born.

"I was waiting to see this luck they talked about. Now, at the end of the day, is this luck?" he says bitterly.

"It's ironic that albinos have gone from being seen as bad luck to good luck with the money coming in between," says Vicky Ntetema, a former BBC correspondent who was one of the first journalists to report the attacks on albinos. Ntetema is now country director for Canadianfunded NGO Under the Same Sun. "The superstitions are still ahead of the money. Albinos are not regarded as people and so it's a lot easier for the guys who do the killing to be persuaded that they are not really killing a person."

On the whole, Tanzanians are reluctant to discuss the issues facing albinos, and many of those who do say the problems are in the past and the government has acted to stamp out the discrimination and violence.

Yet many albinos disagree, claiming NGOs, not the government, are taking the lead in educating the public as well as delivering care. But even the NGOs are viewed with scepticism and distrust, "With all the publicity of the killings, many NGOs came and began to make money out of us," says Peter Kundy, secretary of the Kilimanjaro branch of the Tanzania Albino Society, who claims money earmarked for sufferers is not reaching them.

"Zeru zeru" is a phrase one hears whispered as an albino walks down a busy city street. This Swahili term essentially means "ghostlike person".

"It is a bad word because the meaning of zeru zeru is something like 'inhuman being', and people believe that that means albinos have a big power," says Tito Ntanga, the 33-year-old director of the Albino Revolution Cultural Troupe. "They can do anything, they can appear everywhere. For example, now sometimes we are here and then we appear at the bus stop. It is not a good word for us."

Ntanga's troupe consists of 11 members, all of whom suffer from albinism. Otherwise unemployed, they work to educate the public about their condition and predicament.

"We are doing traditional dancing. We are musicians performing hip hop and R&B. We do traditional drumming and we are even making films. We are going to use traditional dance and performing; it is a weapon for us to fight for our rights," says Ntanga.

The group performs in and around Tanzania's commercial capital, Dar es Salaam, and embark on the occasional field trip.

Skin cancer and other health issues are major concerns for albinos.

The dermatology department at Kilimanjaro Christian Medical Centre (KCMC) has been studying skin disease for more than 30 years.

"Albinism is just one of the skin diseases we treat, like leprosy and xeroderma pigmentosum," says Dr Alfred Naburi, head of the Albino Care Project. "In 1992, we began a programme to combat skin cancer and sun disease among albinos."

Naburi helps train medical graduates from across Tanzania and elsewhere in Africa in the treatment of albinism, aspects of which include skin care, vision correction, public awareness, poverty and personal rights. KCMC has registered what it believes to be almost all of the people living with albinism in Kilimanjaro, one of the 26 regions that make up Tanzania.

"We have registered almost 1,200 people and a big part of it is the mobile clinic outreach that we offer at 22 stations across the region twice a year," says Naburi.

The clinics distribute sunscreen, protective clothing and eyewear while skin-care specialists see patients and perform small operations.

Nurses dispense medicine and offer education in an attempt to extend the life expectancy of albinos beyond the current mid-30s.

Recent interest in the plight of the nation's albinos has been a mixed blessing, says Naburi. "What worries us is this duplication of activities and efforts [by well-meaning, but unco-ordinated NGOs]. They could listen and learn from us when it comes to health care instead of distorting the message and work."

Sister Martha Mganga has been an advocate for albino rights since 1989, when she started visiting rural villages across the Kilimanjaro region to connect with fellow albinos.

"In my family there was segregation ?this was what made me go out to educate families to love albinos and let them know that albinos are like any other human being," she says.

Mganga has faced her fair share of distrust and fear and, many times, has been forced to sleep in the bush, away from villages.

"Sometimes they say I'm a dead person who has happened to come alive again because when albinos die, you can't know where they are. I went to a village in [Tanzania's capital] Dodoma to meet my relatives and I tried to introduce myself, saying, 'I am your relative.' They said, 'No we don't have such a person,' so I spent the whole night outside the house," says Mganga, who, nonetheless, believes attitudes towards albinos are improving.

The Bukumbi Centre is a home for the elderly, the disabled and lepers. In the past few years, it has welcomed people with albinism, too.

Situated in the Mwanza Region, on the southern shores of Lake Victoria, in the northwest of the country, Bukumbi consists of dormitory-style accommodation and is administrated by doctors and nurses appointed by the government.

Angelina Jonas and her sister came to Bukumbi after their father was brutally murdered and one of his legs hacked off. The family had been sitting down to their evening meal, says Jonas, when some strangers entered their home, asking for directions. Her father offered to guide the visitors to their destination after they declined an offer of food.

"Father ?went outside with them. Not long after, we heard him shouting and when we ran outside and down the road we found him lying there with his leg gone. He bled to death right there," whispers Jonas.

Only 20 years old, Jonas sees Bukumbi as a safe haven.

"We are being supported in every way, with food, clothes, medicine and other needs," says Jonas, while admitting she misses her relatives and cannot leave to visit them because of security concerns.
Since the media spotlight began picking out Tanzania's albinos, government organisations, NGOs and private individuals have rushed and stumbled to do their part and, in some instances, claim their share of the spoils. Centres such as Bukumbi are often the all-too-easy first option when decisions about the future of individual albinos are made and, if anything, could prove detrimental as they marginalise sufferers.

Good luck, bad luck or no luck at all, before the albinos of Tanzania can finally feel safe in their own communities, be they in small villages or the big cities, others will have to accept them for what they are: dancers, farmers, children, adults - and most importantly, people.

 

 

The youngest of five girls, 18-month-old Suharlla (right, with her parents), or Chi, as her family affectionately call her, is the only child with albinism to have been born to the Haji clan, who live in the Tanga region, which borders Kenya.

Chi's father, Haji Mbuguni, says that while he and his wife, Shamila, were a little surprised to see the newborn, they immediately accepted their daughter. Both Mbuguni and Shamila had been aware of the presence of albinism in their family trees.

"My grandma was smart and albino; that is why … my wife and I believed that [Chi] was a special gift," says Mbuguni. "At the moment we are not afraid but maybe in future, because she is going to start to move from place to place, there is going to be danger." Sean Robson

 

 

 

 

 

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Beyond the pale

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