Disability & Society ISSN: 0968-7599 (Print) 1360-0508 (Online) Journal homepage: http://www.tandfonline.com/loi/cdso20 Labeling albinism: language and discourse surrounding people with albinism in Tanzania Giorgio Brocco To cite this article: Giorgio Brocco (2015) Labeling albinism: language and discourse surrounding people with albinism in Tanzania, Disability & Society, 30:8, 1143-1157, DOI: 10.1080/09687599.2015.1075869 To link to this article: http://dx.doi.org/10.1080/09687599.2015.1075869 © 2015 Taylor & Francis Published online: 25 Sep 2015. Submit your article to this journal Article views: 2344 View related articles View Crossmark data Citing articles: 2 View citing articles Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=cdso20 Download by: [81.255.145.177] Date: 20 October 2017, At: 04:55 Disability & Society, 2015 Vol. 30, No. 8, 1143–1157, http://dx.doi.org/10.1080/09687599.2015.1075869 Labeling albinism: language and discourse surrounding people with albinism in Tanzania Giorgio Brocco* Institut für Sozial- und Kulturanthropologie, Freie Universität Berlin, Berlin, Germany (Received 4 December 2014; final version received 21 July 2015) This article is based on a qualitative study that set out to analyze the labels and terms attached to 28 people affected by albinism in villages in Kilolo district, Tanzania. Even though national and international attention to killings of people with albinism has attempted to improve general knowledge of albinism and reduce discrimination, most of the community members within the study had lit- tle knowledge of the (bio)medical explanations for albinism and tended to marginalize people with albinism. Framed within a wider moral discourse on ill- ness, disability and socially appropriate behavior, albinism is mostly considered to be God’s will or the consequence of past misdeeds within the family, and many of the existing labels for people with albinism express such ideas. Keywords: albinism; disability; language; stigma; media; Tanzania Points of interest • This article analyzes the labels and terms attached to people with albinism in Tanzania. • The study additionally takes into account the influence that national and international campaigns about and on behalf of people with albinism have had on local perceptions of albinism. • Examination of the labels and terms attached to people with albinism leads to the analysis of the ideas and discourses surrounding albinism in Tanzania, and Downloaded by [81.255.145.177] at 04:55 20 October 2017 vice versa. • Persons with albinism explain and conceptualize their physical condition by adopting institutional terminology introduced by western media campaigns and debates on their behalf. • The present study is among the first ethnographic accounts of the everyday lives of people with albinism in Africa and of the labels attached to them in community and media discourse. Introduction Following the report of the Tanzanian BBC journalist Vicky Ntetema in 2008, which exposed the alleged outbreak of killings of people with albinism in Tanzania’s *Email: [email protected] © 2015 Taylor & Francis 1144 G. Brocco north-west regions (as well as in Democratic Republic of Congo, Burundi and Rwanda), national and international media debates began to focus on the problem of the murders and highlighted the generally poor situation of people with albinism in the country (Bryceson, Jonsson, and Sherrington 2010; Ntetema 2008). Soon after Ntetema broke the first story, the Tanzanian government and members of parliament, the United Nations Children’s Fund (UNICEF), the United Nations (Alum, Gomez, and Ruiz 2009), the European Parliament and the US government all condemned the murders. The killings were predominantly explained by these actors in terms of Tanzanian ‘traditional superstitions’ and ‘witchdoctor practices,’ yet they took almost no notice of the sociocultural circumstances that could have caused such a phenomenon, and did not hint at the life experiences of people with albinism except in pitiful terms (Burke, Kaijage, and John-Langba 2014). Given such intense and far-reaching attention to the killings, many non-governmental organizations (NGOs), such as the Red Cross, have implemented human rights programs in Tanzania to defend and support people with albinism and spread awareness campaigns on their behalf (Burke, Kaijage, and John-Langba 2014; Red Cross 2009). However, despite the outcry over the killings of people with albinism in Tanzania, few scholars and journalists have thus far focused on the everyday life experiences of people with albinism, their families and the community contexts in which they live. Little attention has also been paid to the ways in which explanations for and understand- ings of albinism among the local population have been modified by the various (inter)national media debates. The present article intends to analyze the ways in which albinism is conceptual- ized by people with the condition, as well as by their families and other community members, within the villages of Kilolo district, an area in the Iringa region of Tanzania, where the research was conducted. In pursuit of this goal, the analysis is concerned, on the one hand, with ideas and discourses that provide an explanation for albinism and, on the other, with the labels and terms attached to people with albinism. The first point of analysis proves useful for examining whether past ideas (i.e. those prevalent before international attention was drawn to the killings) in Tanzania regarding albinism (such as albinism being a curse because of past misdeeds within the family) have been modified and/or combined with (bio)medical knowledge about the congenital condition, as spread by (inter)national awareness campaigns. The examination of ideas and discourses includes communitarian per- Downloaded by [81.255.145.177] at 04:55 20 October 2017 ceptions of albinism, cultural assumptions about the body, and meanings connected to physical difference (Ingstad and Whyte 1995, 4). The second point of analysis considers the various labels and terms related to albinism as a way in which stigma and deviance (Devlieger 1999a) – or, conversely, attitudes of acceptance and inclusion – are articulated by other members of the community and are thus an expression of the general ideas circulating in Tanzania about albinism. The article will show how persons with albinism try to explain and conceptualize their own physical condition by identifying themselves as disabled and by adopting institu- tional terminology generated by western media campaigns and debates on their behalf. Research methodology The ethnographic research on which this article is based took the form of narrative interviews, group discussions and direct and participant observation conducted over Disability & Society 1145 two periods totaling 11 months (August–November 2012 and November 2013–May 2014) in Ilula ward and other villages of Kilolo district, in the Iringa region of the southern highlands of Tanzania. The research was qualitative and exploratory in nat- ure, which allowed for the uncovering of new ideas and an examination of the com- plexities of the experiences of albinism. The survey consisted of a multi-site study. Participants were selected based on their status as persons with albinism, as parents of persons with albinism or simply as community members. In addition to these informants, traditional healers (waganga wa jadi), NGO staff members and religious (Christian and Muslim) representatives were interviewed. In order to preserve informant anonymity, all of the names used in this paper are pseudonyms. Although I refer to a large number of informants and participants, the present inquiry mostly focuses on 28 individuals (13 males, 15 females) with albinism. The participants in the survey ranged in age from seven to 70 years, with a median age of 24 years. The majority of the males with albinism had finished primary education and were working as farmers or were unemployed. A further three participants were employed as a secondary school teacher, a shop (duka) helper and a bus (dala dala) ticket clerk. The remaining individuals younger than 15 years were still attending or had recently completed primary school. Of the female participants, six were attend- ing or had recently finished primary school, and three were attending secondary school. Only two women worked on farms not far from their homes (one of these two women was not affected by albinism herself but was the mother of two children with the condition). One female participant from Ilula had started a small-scale busi- ness (biashara) selling fruit and vegetables from a stand made of sugarcane along the paved street passing through Ilula ward, and additionally traded charcoal in the nearby villages. Of the respondents who were between 16 and 24 years old (and thus considered of marriageable age locally), two of the female and four of the male informants were still unmarried and lived with their parents. Albinism and stigma: previous research and studies According to (bio)medical terminology, albinism refers to a group of related conditions resulting from a genetic mutation that causes a deficiency in melanin pro- duction (Aquaron, Djatou, and Kamdem 2009; Lund 2005). There are two main types of albinism and several subtypes. People with oculocutaneous albinism, the Downloaded by [81.255.145.177] at 04:55 20 October 2017 predominant type, can present a hypopigmentation of the skin, hair and eyes. Albinism is present within all ethnic groups and populations worldwide, but preva- lence rates are particularly high in sub-Saharan Africa. While the prevalence of peo- ple with oculocutaneous albinism is about 1:17,000 in the United States (Wan 2003, 277) and 1:20,000 in Europe, in Africa approximately one individual in 5000 is reported to have albinism (Hong, Zabeed, and Repacholi 2006) and in Tanzania one in 1429 (Cruz-Inigo, Ladizinski, and Sethi 2011; Kromberg and Jenkins 1982). People with albinism are exposed to stigma all around the world, in the United States (Wan 2003) as well as in Africa.