This photo essay discusses the interactions between international and national non-governmental organizations (NGOs) and governmental organizations on the one hand, and local populations and people with albinism on the other, in Tanzania. From the mid-2000s onward, international attention started to be drawn to the aggressions toward, and the murders of, people with albinism in the north-western part of Tanzania (Ntetema 2008).
To date, around 74 individuals with the condition are said to have lost their lives (Smith 2015; Mlacha 2015; Shigongo 2015). Since the increase in attention to such issues, national health organizations as well as international NGOs have begun to carry out awareness campaigns on behalf of people with albinism. At the same time, they have implemented humanitarian aid programs, distributing sunglasses and sunscreen. Some organizations have also distributed grants and scholarships to allow people with albinism to pursue their education.
The following essay presents connections between these supra-local actors who are participating in the global flow of (bio)medical and human rights campaigns about albinism, and persons with albinism themselves who, instead of simply being passively exposed to such discourses, actively appropriate them in the making and remaking of their identities. In this regard, people with albinism capitalize on the global flow of (bio)medical and human rights campaigns on their behalf in order to enhance their inclusion within their families and local communities, while attempting to redefine ideas of normalcy and able-bodiedness in Tanzanian society at large.
Distribution campaign of sunscreen and hats to people with albinism, carried out by volunteers of the NGO Tulime Onlus. In the photo, a volunteer is giving the major (mwenyekiti) of the village and a boy with albinism explanations on how to use the sunscreen. During the census I conducted on behalf of Tulime Onlus as a researcher-cum-employee, I distributed sunscreen, hats and sunglasses, while simultaneously collecting data on the life conditions of people with albinism in rural areas.
At the same time, this process of appropriation incorporates previous conceptions of albinism derived from religious explanations, especially at the rural level, which has not been deeply reached by governmental and international awareness campaigns.
Oculocutaneous Albinism, which is the most widespread type of albinism, is a congenital condition that phenotypically appears as hypopigmentation of the skin, hair and eyes. Around the world, as in the USA and Europe, approximately one individual in 17,000-20,000 persons is estimated to live with albinism (Wan 2003). In some African countries, the percentage is notably higher than the global average, at around one in 4,728 in Zimbabwe (Lund 1996) and one in 3,900 in South Africa (Kromberg and Jenkins 1982).
A young woman in Ilula shows a poster produced by Under The Same Sun, which she has hung up in her house. She stated: „We people with albinism are human beings (binadamu).”
In Tanzania, according to the official National Population and Housing Census of 2012 (National Bureau of Statistics 2014), there are 16,477 people with albinism, which accounts for around 0.04 percent of the total population of 44,928,923 (ibid. 2014). A review carried out by the World Health Organization (WHO), though based on incomplete data, found the prevalence of people with albinism in the country to be one in 4,000 individuals (Hong et al. 2006: 3). Some of the informants in my study from the Tanzania Albinism Society (TAS) claimed, however, that the number of people with albinism is much higher, estimated at around 170,000 individuals.
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Hii ni Blog ya Watanzania popote walipo duniani kwa ajili ya kuhabarisha, kutoa/kupokea taarifa na kuelimisha mambo yote yaliyo chanya kwa Taifa letu. Tafadhali sana unapotoa maoni usichafue hali ya hewa wala usijeruhi hisia za mtu/watu. Kuwa mstaarabu...