Recently I had a meeting at Under the Same Sun (UTSS), a local NGO that aims to improve the lives of persons with albinism (PWAs) in Tanzania through advocacy and education. Albinism is a genetically inherited condition that affects people all over the world. In Europe and North America it affects approximately 1 in 20,000 people, while in Tanzania and the rest of East Africa albinism is much more prevalent, affecting around 1 in 2000 people. I’ve only ever seen (or noticed) a couple people with albinism in Canada, while in my one month in Tanzania I’ve already seen quite a few. The effects of albinism include a lack of pigmentation in the hair, skin, and eyes. This leaves persons with albinism more vulnerable to sun exposure and other bright light, and they have a much higher risk of skin cancer and impaired vision or blindness. The sores and scars they get from sun burns and skin cancer can look like a contagious disease to people who don’t know any better, so PWAs are often avoided, mocked, and bullied. Another serious problem in Tanzania is widespread social discrimination of PWAs because of powerful beliefs, including the belief that raping an albino woman will cure AIDS and the belief of many people that the body parts and organs of PWA’s have magical properties that can help people obtain wealth and success. PWA’s are often killed for their body parts which are then used in potions and spells by witch doctors. This is a problem that has not been majorly publicized, as there is a belief that PWAs in Tanzania “disappear”, they don’t die, and therefore deaths are not often reported.
|Some interns and I with the staff of UTSS|
Read the article by Vicky Ntetema that first brought attention to the murders of persons with albinism in Tanzania here.
The majority of PWAs are classified as legally blind, and this makes excelling in school and the workplace extremely difficult. Glasses, magnifiers, and special vision sensitive computer equipment are in low supply in Tanzania. Students often do poorly in school simply because they can’t see what they are reading. A lot of them fail the standardized grade 7 exam because the font size on the test is too small, and they end up dropping out of school. Without an education PWAs are often discriminated against in the workplace and have difficulty holding down jobs because of their impaired vision and inability to work in the sun. Once teachers are educated on the condition they can make provisions for these students by letting them sit closer to the blackboard, giving them more time on exams, and increasing the font size on class handouts. Parents also need to be educated on the condition. Many parents don’t bother sending children with albinism to school, because they don’t see the point. Sending a child to school is seen as an investment, and if a parent doesn’t expect their child to excel, or even live past the age of 30 (the average life expectancy of PWAs in Tanzania), why spend what little money they have on them? To combat this problem, UTSS is currently sponsoring 318 PWAs to go to school through their Education Scholarship Fund, in levels ranging from primary school to PhD programs. Students chosen for these scholarships are generally from rural, more vulnerable areas or they have already been attacked or abandoned. The post secondary sponsorships are particularly important, as very few PWAs pursue higher education. The hope is to have a high output of educated PWAs in Tanzania, so that they can advocate for and defend themselves.
Persons with albinism have a lack of melanin – the pigment that protects skin from ultraviolet light - putting them at an extremely high risk for skin cancer. Students sponsored by UTSS are taught how to protect against the sun’s harmful rays and are provided with items essential to their health which may be unavailable in rural areas such as high SPF sunscreen, long-sleeved shirts, trousers, and wide-brimmed hats. They are also provided with health education and medical treatment such as eye exams, skin care, and cancer treatment should the need arise. With adequate protection from the sun and access to medical treatment, persons with albinism in Tanzania should live as long as any ordinary person, as they do in other parts of the world.
When we met with Ntetema at UTSS she told us about some of the beliefs surrounding persons with albinism in this country. There is a myth that PWAS’s are not human, but ghosts, and this is why when they disappear people don’t do anything about it. Related to that, there is a myth that albino children are the result of their mother sleeping with a white man or with a European ghost. They don’t realize that the father must also carry the gene that causes albinism, so many men abandon their families when an infant is born with the condition. In the past it was believed that any family with albinism was cursed by the gods, and touching the child would bring bad luck. If anything went wrong in a village, say a bad crop or a drought, the family with an albino child would be blamed. For a time, in northern Tanzania albino children would be treated like family by the chief and given anything they needed as they grew up, only to be buried alive in the chief’s grave when he died. This was so they could serve the chief in the afterlife. Somewhere along the line a money hungry witchdoctor came along who started telling people that the organs, body parts, and blood of PWA’s could solve their problems, rather than cause them. At first it was taboo to kill a PWA for body parts, but it was ok to take parts from someone who was already dead. So people began robbing the graves of PWAs. This led families to bury their albino family members in the floors of their homes, in unmarked graves, or in graves sealed with cement. Eventually, as the demand for body parts rose, people began attacking and killing or maiming PWAs. Bodies are usually found with missing limbs and sometimes with a whole in the neck where their blood has been drained out. Since 2007 there have been reports of 70 attacks on PWAs in Tanzania: 60 murders and 10 attempted murders, as well as 10 looted graves. The actual number of attacks is most likely closer to 100. Despite the fact that most of those killed are children, murders and attacks go unreported because often the family is involved or they are too scared of retribution to report these crimes.
Ntetema told us the story of a Tanzanian father of four children with albinism. In the year 2000 three out of four of his children were poisoned and killed when they ate a meal provided by someone they knew. The youngest only escaped because he was a one year old baby and therefore did not share the poisoned meal with his siblings. After the grieving father had buried his two teenage daughters and young son some men came knocking on his door, looking for his youngest child. To protect his only surviving son he left everything and fled with him to another village, as thousands of other Tanzanian albinos are doing. So many families have fled their villages that refugee centers have been set up for them in schools. UTSS is currently working with UNICEF to improve the conditions of these centers, which are not equipped to handle so many people. In the case of this father, he found out after fleeing to another village that two of his children’s bodies had been stolen from their graves. The father didn’t even report the murders until years later, and not because he didn't love his children. Up to 90% of Tanzanians believe in magic and witch doctors, everyone from your average farmer all the way up to politicians. Even the president of Tanzania did not publicly decry the killings until there had been 19 murders reported. 19! Clearly even the president believes in the magical properties of PWA organs, and only spoke out when pressured to. Most of the murderers of PWAs are not taken to court because of corruption, fear, and Tanzania’s culture of secrecy. Even in cases where murderers have been charged, justice is only very slowly being served. Out of 63 murder cases where charges have been laid, only 3 have gone to court. From these 3 court cases 11 people were sentenced to hang, but all 11 of them are still alive and well, albeit alive and well in prison.
The problems facing PWAs are much more widespread than just Tanzania. One witch doctor has said there is a powerful network of people involved in the murders of PWAs and the export of body parts all across East Africa, including police officers and politicians. Murders of persons with albinism have also been reported in Kenya, Burundi, the Democratic Republic of Congo, Swaziland, South Africa, Guinea, and Nigeria, and have surely gone on unreported all over Africa. I had no idea that persons with albinism in Africa faced such hardships, as I’m sure most of the world has no idea. More people like Vicky Ntetema, Peter Ash, and the staff of Under the Same Sun need to take the risks and publicize this issue, or innocent men, women, and children are going to continue being murdered or mutilated simply because they were born without pigment. The rest of the world needs to hear about the heads of infants with albinism being transported across borders and the fingers of PWAs being worn on necklaces as good luck charms. The world needs to wake up to this tragedy and something needs to be done.