Language and Discourse Surrounding People with Albinism in Tanzania

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

Published online: 25 Sep 2015.

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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 little knowledge of the (bio)medical explanations for albinism and tended to marginalize people with albinism. Framed within a wider moral discourse on illness, 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]

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 understandings 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 institutional 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 attending 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 prevalence rates are particularly high in sub-Saharan Africa. While the prevalence of people 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. The main reason for this is the visible mani- festation of albinism, namely the hypopigmentation of the skin. In Africa, people with albinism are often either considered supernatural beings in contact with the anti-world of sorcerers (Devlieger 1995) or water spirits (Cimpric 2000; Machoko 2013), or viewed as common persons who are being punished for the past mistakes of their family members (Blankenberg 2000; Djatou 2009), particularly the inﬁdelity 1146 G. Brocco

of their mothers (Görgen 2003, 59). In addition to these explanations, albinism can be also articulated as God’s will (Baker et al. 2010; Braathen and Ingstad 2006). People with albinism – as people with other disabilities – are mainly perceived as ‘different’ and ‘deviant’ (Goffman 1963; Reid-Cunningham 2009; Susman 1994), and as the research shows this is particularly the case for individuals not personally familiar with them. Conversely, some people with albinism are easily accepted and included by their families and communities (Braathen and Ingstad 2006), as is the case in Malawi (Braathen and Loeb 2011), and they try to counter stigmatization by forming albinism associations or self-help groups; such groups in Western Africa and Central Africa include Asmodisia in Cameroon (Chelala 2008) or the Tanzania Albinism Society. A clue to the stigma attached to people with albinism in several African coun- tries is present in the labels used to deﬁne them. In the Congo, for instance, Ogrizek (1983, 28) reports that individuals with albinism are called mbunzu gozo (black eater of manioc) in the sangho language, a deﬁnition that emphasizes the ambiguous status of the disability within the social sphere of the community. In Mali among the Bamana and Maninka, people with albinism are called gomblè (red man) because they are susceptible to severe sunburn which turns their skin red (Imperato and Imperato 2006). Furthermore, mzungu (white man, European) and napwere (which refers to a pea-brownish color) are common name-calling terms for people with albinism in Malawi (Braathen and Ingstad 2006, 606).

Stigma and acceptance: past and present explanations and ideas about albinism Although cross-cultural work in anthropology and disability studies has highlighted the fact that the western definition of disability does not necessarily have a clear correspondence to how people define disability in other parts of the world (Ingstad and Whyte 1995), Groce (1999) points out that all societies and cultures do nevertheless have explanations for why some individuals have physical or mental differences as compared with ‘the norm.’ As underlined by Ogechi and Ruto (2002), for instance, although persons with a disability in Kenya are usually considered ‘normal,’ other villagers do try to understand the reasons why disability occurs. In Tanzania since around 2008, numerous awareness campaigns for albinism have been conducted by national organizations such as the Tanzania Albinism Downloaded by [81.255.145.177] at 04:55 20 October 2017 Society and international organizations such as the Canadian NGO Under the Same Sun, and public debates have been held in the national media run by the Tanzanian government. These efforts have, however, largely failed to increase significantly the (bio)medical knowledge of albinism at the local and rural levels; and, as my own research has shown, this is especially so in more impoverished areas of the country where people generally have less education. Many Tanzanians, especially those who are poorly educated, are not aware or are only partially aware of the (bio)medical explanations of albinism, and this lack of knowledge complicates the process of inclusion/acceptance of people with albinism in their communities. While some past ideas about albinism have definitely disappeared or are not seri- ously upheld in contemporary African societies (Ogechi and Ruto 2002), such as the idea that a child with albinism is a laana (curse) to the family, others remain valid and go through syncretic processes combining (bio)medical knowledge with traditional conceptions and religious explanations. Certain ideas which are no longer popular owing to the influence of schooling, (bio)medicine as well as Christianity Disability & Society 1147

and Islam (Ogechi and Ruto 2002), however, were expressed by some elders in the village of Pomerini. One elderly man explained, for instance, that ‘previously’ individuals affected by albinism were believed not to be human, to ‘disappear’ (today understood as a euphemism for being hidden or killed by the family members) instead of dying, or to be the result of the union between a ‘white man’ (mzungu) and a ‘black woman’. In contrast to these ‘past’ ideas, most individuals with albinism in Kilolo District remarked that being born with pale skin, sandy-colored hair and light brown eyes is a plan of God (mpango ya Mungu) or a condition due the work of God (kazi ya Mungu). Lepida, a 19-year-old girl with albinism who was born and still lived with her parents, affirmed that although she did not have any firm knowledge of what albinism is, she knew for sure that God had created her (niliumbwa na Mungu)as she was, as ‘he created all other creatures on earth.’ A similar conception was expressed by Jasmin, a young mother with a daughter with albinism. When asked how she felt about having a child with albinism, she answered: Even though I was aware that it was a plan of God, I was really scared and depressed when she was born because of her white skin. I do not know the reasons why her skin is white, I cannot say anything about her body. The only thing I know is that she was born this way because of God’s will. (Jasmin) According to Jasmin, God’s plan must be accepted by human beings, even if it causes disgrace, sorrow or regret. Albinism is thus perceived as a condition attribu- table to God’s will and therefore included among the multifaceted domain of reality. The idea that albinism is a physical condition determined by a divine plan was also voiced by some of the other villagers. The explanation that God has a plan which is ‘unknown to human beings’ is one that came up in many conversations. In Hehe society (the main ethnic group that inhabits Iringa region), God (Mungu) is believed to be the primary source from which all creatures originated, and thus he is the only one able ‘to put these creatures in order’ as well as evaluate and judge individuals’ ethical and moral behavior (Crema 1987, 144). This conception of God, deeply influenced by decades of Christian evangelization as well as contact with Muslim believers from costal Tanzania, currently seems to be strongly alive. God, imag- ined as the ruler of the world, is furthermore perceived as able to bring about ’ Downloaded by [81.255.145.177] at 04:55 20 October 2017 various diseases and physical conditions. Maladies caused by God s will therefore fall within the normal course of things (Bellagamba 1991; Feierman 1981, 355) and are seen as usual or common (kama kawaida). Within the range of such diseases and conditions, albinism is even included among those inherited (urithi) from past generations. In contrast to the categories of maladies such as illnesses of man (brought about by sorcery) or of spirits (mashetani or majini), illnesses and diseases caused by God can be furthermore believed to happen with no moral cause (Dilger and Luig 2010; Feierman 1981; Meier zu Biesen, Dilger, and Nienstedt 2012). Even though the puzzling plans or will of God lie outside the bounds of human understanding, three of my informants stated that albinism may appear due to a lack of iron (madini) in the blood of affected persons. This explanation was expressed by Maria, a 17-year-old girl with albinism who was attending the special secondary school for girls with disabilities: 1148 G. Brocco

My skin is white because there is a lack of iron in my blood (kuna ukosefu wa madini). This lack of iron in my blood, that makes my skin change (kuboresha) color, is due to God’s will. Look at my skin! Even though it is white for lack of iron, I think it is not different from black skin. A similar thought was articulated by Renatus, a traditional healer (mganga/ waganga wa jadi) in Ilula. When asked about albinism, he affirmed that it is a condition basically due to God’s will that is manifested as a lack of iron in the blood. In cases where there were no other persons affected by albinism in past generations (ki/vizazi) or among kin ties (u/koo), some interviewees added that a deficiency of iron, aside from being a divine plan, could be passed by the mother to her soon-to-be-born baby. Albinism is thus perceived to be owing to a plan of God that directly involves the relatives and/or mother of affected individuals. When neither of the parents have albinism themselves, it is not by chance that women are the first to be blamed by their husband’s relatives, and consequently by members of the community, for being the primary cause of albinism in their children. The most frequent epithet addressed to these mothers is ‘sick person’ (mtu mgonjwa/watu wagonjwa). According to the data collected, while women with albinism are often considered watu wagonjwa, those who are not themselves affected by albinism, and are thus categorized as ‘normal women’ (wanawake wa kawaida), can come to be labeled as wanawake wagonjwa when they have a child with albinism. In cases where there are other persons with albinism in past generations, however, the mother of a child with albinism is not held responsible for her child’s condition, and albinism is therefore classified as ‘normal.’ No matter whether the woman is affected by the congenital condition herself, the most important element of the dowry that a bride-to-be has to assure is that she will give birth to healthy (and black) children. The only way that a woman can assure she will not be considered ‘sick’ is to live a ‘moral’ life and commit no misdeeds. In this case, God will not punish her and her entire family with a child with albinism. An example of this social attitude is represented by the case of 15-year-old Fadhili. When his family members were asked about their reaction to having a child with albinism, Fadhili’s mother said that when she and her husband looked at the white skin of their son, they started wondering how it could have happened. For Downloaded by [81.255.145.177] at 04:55 20 October 2017 several days after the birth, they consulted many relatives and found out that a dis- tant cousin was also affected by albinism. This discovery, according to Fadhili’s mother, ‘made us really relaxed, because since then we have understood that Fadhili is not different from other persons but for his white skin.’ Albinism is thus often considered to occur due to God’s will. The Creator’s divine plan, although unknown to human beings, materially appears as a lack of iron in the blood. When albinism is not present in past generations or in other members of the family, however, it is believed to be inherited from the mother of the individual affected. Obviously, such ideas regarding albinism strongly influence the self-esteem of people affected by the condition. People with albinism must constantly prove that they are as normal and human as other persons. Julius, a farmer with albinism, stated: ‘We are human beings (binadamu), but we have always to prove and explain it to the others.’ Disability & Society 1149

The strength of the words: language and labels for people with albinism In the case of albinism, it is interesting to discover how the bodies of people with albinism ‘get languaged’ (Ramanathan 2009) by community and family members in Tanzania. Language and labels are in fact not only the medium through which ‘our engagement with our worlds happen[s] but also the medium through which our collective notions of disability and able bodies get discourses into place’ (2009, 3). Connections between language(s) and disabilities are multidirectional and inter- twined. This means that it is not only through language that social ideas and discourses on disability and albinism emerge, but also that language itself constructs ideas and discourses about disability and albinism (Ramanathan and Makoni 2007). In general, labels for people with albinism testify that individuals with albinism are perceived as different by other community members, but they also reveal the assignment of social importance to that difference (Green et al. 2005, 201). In other words, through the examination of the language and terminology of albinism, it is possible to understand how notions of normalcy and difference are produced and reproduced (McPherron and Ramanathan 2011). Previous studies on the language and labels of disability have highlighted how, on the one hand, name-calling terms shape understandings of the bodies of persons with a disability within a community and, on the other, how they reflect relations between norms that, in conjunction with other societal and (bio)medical tropes, shape a shared visual field of normalcy and bodies that are not included in this category (McPherron and Ramanathan 2011, 7). Language and labeling can constitute proof of the social position of those who are labeled (Avoke 2002). Derogatory terms for people with a disability express how a community perceives them as less than human, and they create images and codes for particular conditions and disability in general (Corbett 1996). Labeling and terminologies attached to individuals with a disability thus represent clues about the society within which these persons live (Bolt 2005) and how this environment in itself may be disabling. The community, furthermore, while highlighting the perceived difference of persons with a disability from other individuals, influences such persons’ self-perceptions and self-esteem (Corbett 1996). This constitutes a further level of disability for persons with a disability and albinism. Discriminatory language has just as much power to exclude as other forms of marginalization (Gottlieb 2001; Singal 2010). It therefore represents an effective lens through which to analyze the social position and considerations of people with a dis- Downloaded by [81.255.145.177] at 04:55 20 October 2017 ability – in this case albinism – within the community under study. For the purpose of the present article, the labels attached to people with albinism also highlight how perceptions of albinism have changed over time, and how this shift has been partially influenced by national and international campaigns and media debates striving to create a stronger sense of inclusion for non-normative social actors (Ginsburg and Rapp 2013). In Tanzania, people with albinism have been traditionally named zeruzeru,a label that is generally translated as ‘ghost,’ even though it is the official term for people with albinism according to the Dictionary of Swahili Language (AA.VV. 2005). According to the Dictionnaire Swahili-Français, its origin can be traced back to idioms stemming from Bantu languages such as Kizaramo and Kizigua, in which zeru means cendré (Engl. ashen) and blanc (Engl. white) (Institut d’Ethnologie 1939, 1039; Lagercrantz 1979, 62; Schühle 2013, 9). In the Iringa region and Kilolo district, although the meaning of this term is known by the majority of the 1150 G. Brocco

population, its use remains widespread in remote villages far from the regional capi- tal Iringa, although in more populous and urban areas it is no longer common. According to the social science literature on albinism in Tanzania and the ﬁeldwork experience on which this article is based, although it is impossible to establish with certainty whether the word always had negative connotations (McBride and Leppard 2002, 635; Schühle 2013), at least since the beginning of public attention to the killings of people with albinism in 2008, many persons affected with albinism (as well as many who are not) have declared the term zeruzeru to be highly denigrating. Despite this, some individuals with albinism stated that they did not perceive zeruzeru to be an offensive nickname in itself. Erik, for instance, stated that: Some people always call me zeruzeru or mlangala [transparent], but, up to me, these are not denigrating words at all. Perhaps they could become offensive if the individuals’ attitude towards me is offensive as well. According to Erik, some terms therefore acquire meaning depending on the social actors using them. In order to determine the meaning of a word, it is important to take into account the social setting as well as the way in which it is ’performed.’ In Erik’s statement he also refers to another term for people with albinism: mlangala (transparent). This term is the Kihehe (language of the Hehe people used throughout the Kilolo district together with Kiswahili) equivalent of the Kiswahili word zeruzeru. Even though largely substituted by zeruzeru in daily conversation, mlangala is also widely perceived as offensive. The main reason for this lies in the fact that both of the terms refer to past times in which individuals with albinism stood for bad omens within family and community settings, and were said to ‘disappear,’ referring to their possible murder by their family members and burial within the house. While the matter of the positive or negative connotations attached to the words zeruzeru and mlangala is still open, there is a relatively new label for albinism that is extensively thought of as denigrating: dili (a loanword from the English noun ‘deal’). Although its origin is unknown, the term refers to the commercial value of the body parts of people with albinism. Dili has come to be widely used to offend persons with albinism, probably as the result of news released by the (inter)national media of the killings of people with albinism. According to Anjela, a woman with albinism: Downloaded by [81.255.145.177] at 04:55 20 October 2017 There have always been some persons who call me zeruzeru, but I never got angry with them because this word is not an offence. Otherwise, I always get angry when strangers in the street nickname me dili, because they only do it to offend me. Dili is thus acknowledged as a word that is truly offensive because it denotes people with albinism as mere objects who can be killed and their body parts sold on the black market. Moreover, the term highlights the problems that many people with albinism face in their interactions with unfamiliar persons. Those who do not belong to their immediate family unit often represent a threat to individuals with albinism. Mindful of the reports of murders of people with albinism in the northern part of Tanzania, many individuals with albinism are highly frightened of strangers. Their fear increases when they travel outside their own villages and are teased with the nickname dili. The words of Benjamin, a 70-year-old farmer with albinism, are exemplary: Disability & Society 1151

Here the situation is relatively quiet, but sometimes when outside of the village strangers call me dili. Sometimes I felt really frightened because it could happen that one of these persons intended to kidnap me. One never knows what might happen. According to Benjamin, offensive terms such as dili can be interpreted as an initial sign of subsequent aggression plotted by other individuals. This is a fear that has grown since the widespread media attention to the killings. Nonetheless, Benjamin’s statement also reveals another truth, namely that most people with albinism experience marginalization and stigmatization when they come into contact with persons whom they have never met before. In contrast to this, they afﬁrmed that they are accepted by villagers and neighbors; people who are, more than strangers, acquainted with their physical appearance. Villagers might therefore condemn discriminatory attitudes toward people with albinism and even try to protect them. Jasmin explained: When my daughter [with albinism] was attending primary school, she faced many problems. During that time, many classmates of her used to laugh at her, tease her for her skin color, make a fool of her because she could not see the blackboard from afar, and sometimes beat her up. The situation became better only when her teacher repri- manded my daughter’s schoolmates and explained to them that she is as normal as other children. While strangers might often refer to people with albinism using the term dili, individuals with albinism living in Ilula ward (although much less so for people in Kilolo district, as will be explained later) preferred to call themselves watu/mtu m/ wenye ulemavu wa ngozi (individual[s] with a disability of the skin), albino/maalbino (individual[s] with albinism or albinos) or watu/mtu m/wenye ualbino (individual[s] with albinism). Since the widespread news reports surrounding the killings, the terms mtu mwenye ulemavu wa ngozi, albino/maalbino and watu/mtu m/wenye ualbino have been used in the ofﬁcial documents of NGOs and by state representatives. Spread by the national media, these terms consequently became more commonly used, at least among educated Tanzanians in urban areas, although even among the poorly educated respondents some people with albinism also referred to their condition in terms of disability. This could be explained by the fact that most of the interviewees were involved in or in some way connected to the public campaigns on their behalf that took place in Kilolo district. In addition to the terms examined up to now, another widespread label used to Downloaded by [81.255.145.177] at 04:55 20 October 2017 refer to an individual with albinism is mzungu (white man). This Kiswahili word commonly refers to white people of ‘western’ origin. When applied to people with albinism, its connotations are ambiguous, being either offensive but also possibly complementary. The alleged denigrating power of the term is achieved by highlighting the stark contrast between the poverty of individuals with albinism and the high economic status of white western citizens, and is thus considered mocking. Con- versely, if it is used to refer to individuals affected by albinism who have acquired wealth and status, the term is taken as a compliment. According to the words stated by one of the research’s key informants: If I call mzungu someone who is a poor and unemployed albino, it means I want to tease him because he is not as rich as a white man is. But if I use mzungu for referring to Keisha [a famous Tanzanian singer with albinism], I give her a compliment since she has lots of money. 1152 G. Brocco

All of the people with albinism in the study perceived the nickname mzungu as highly depreciative for two reasons. On the one hand, they were aware that it is a joke which underlines their poor conditions. On the other, they regarded it as a way for other black persons to try to exclude and marginalize them because of their physical features. It is not by chance that most of the interviewees affected by albinism frequently stated that they felt as different from white people as they did from other black individuals.

Discussion: reducing stigma in the contest of local–global intertwinements Many awareness-raising campaigns on behalf of people with albinism have been carried out by different actors within the Tanzanian public arena. The Tanzanian government, through public speeches by President Kikwete and other members of parliament, has condemned the killings of people with albinism and has tried to enhance their inclusion within their communities. One of the instruments utilized by the government has been the inclusion of people with albinism in special schools for children with other disabilities (especially schools for children with visual impair- ments). Therefore, the Kilimanjaro Christian Medical Center, a national hospital located in Moshi, has launched – in collaboration with the Tanzanian Ministry of Health, Under the Same Sun and Standing Voice (an NGO from the United Kingdom) – a project for the distribution of sunscreens, also providing patients with albinism free surgical treatments for skin cancer. Furthermore, international NGOs such as Under the Same Sun, founded in 2008 by Peter Ash, an entrepreneur with albinism from the Evangelical field, have distributed promotional materials such as posters, desk calendars and flyers throughout the country to sensitize the population to the theme of albinism (these posters were observed during the research in the Kilolo District Office as well as in the houses of some informants with albinism). These activities have been conducted in collaboration with the Tanzania Albinism Society, which has branches in every region in the country and is the national orga- nization of people with albinism in Tanzania. In addition, national newspapers (e.g. Mwananchi, Tanzania Daima and Habari Leo), tabloids (e.g. Amani, Sani and Iljumaa) and radio (e.g. Radio1Stereo, TBC and Radio1Africa) and television (e.g. ITV and Star TV) stations, whose primary language is Kiswahili, have reached the majority of the Tanzanian population, at both the national and local levels, with Downloaded by [81.255.145.177] at 04:55 20 October 2017 pleas to end the killings and accept people with albinism within the community (jamii), on the basis that they are human beings like everyone else. Despite these efforts, the Tanzanian community members of my study, who mostly live in rural areas in conditions of economic poverty and include both persons with and without albinism, continue to explain albinism in terms of religious discourses referring to the will of God. Such religious ideas have been interpolated with (bio)medical explanations for albinism by the younger generation living in villages closer to urban areas. For these latter interviewees, albinism is due to a divine plan that appears as a lack of iron in the blood of persons with the condition. This particular explanation for albinism can be interpreted as an example of the introduction of biomedical conceptions into traditional religious discourses, thus producing new meanings (Pool 2003). Aside from new explanations and discourses, media debates and awareness campaigns have (sometimes unwittingly) also contributed to the spread of new labels and terminologies for people with albinism. The diffusion among the population of Disability & Society 1153

terms such as ‘people with albinism’ or ‘people with a disability of the skin,’ brought by international agents and organizations (such as the United Nations and the European Union) and through international campaigns for the rights of people with disabilities (e.g. the UN international Albinism Awareness Day, adopted in 2014), is not, however, uniform and unvarying. Despite this, individuals with albinism prefer being called maalbino and/or watu wenye ulemavu wa ngozi and/or watu wenye ualbino because through these terms of international origin they can gain a recognizable status within their own local communities. Such a status – which is determined and shaped indirectly by national and international political authorities – could be seen as displacing citizenship between the public domain and the domestic spheres of social life (Das and Adlakha 2001). People with albinism’s desire to be called maalbino and/or watu wenye ualemavu wa ngozi and/or watu wenye ualbino is thus about how they ‘in turn understand themselves and act to make claims, demand protection, communicate and seek information’ (Ingstad and Whyte 2007, 21). In other words, language is one of the ways in which people with albinism experience their being-in-the-world (Csordas 1994, 2011) as persons with albinism. Their lived experience of being-in-the-world involves both the bodily internalization of external influences as well as the externalization of bodily processes out into the world (Csordas 1994, 2011). The fact of being defined as a person with albinism – and so with a disability – therefore allows these individuals to position themselves in their communities using the power of global flows of information and labels at the local level, while endeavoring to gain political and social status within their local communities and Tanzanian society as a whole. In a disabling society – as Tanzanian society might be described with regard to the (non-)inclusion of people with albinism – the definition of being a person with a disability constitutes a way for persons with albinism, on the one hand, to find alternative and more suitable epistemologies for albinism and, on the other, to explain to other individuals why they cannot do certain things which people without disabilities can do (e.g. due to the hypopigmentation of their skin it is not possible for them to carry out agricultural work under the sun as other black-skinned people do, or that because of their eyesight problems they cannot see at a long distance). The self-recognition of being a person with a disability, understood as the physical inability to carry out given daily tasks, hails from the idea of normalcy within Tanzanian society in which every individual is expected to perform all duties with- Downloaded by [81.255.145.177] at 04:55 20 October 2017 out asking for support from others. According to some subjective experiences of people with albinism involved in the research, the concept of albinism can be decon- structed by broader notions of kinship and different perceptions of the condition within the family of individuals with albinism.

Conclusion As has been shown, terms for people with albinism such as zeruzeru or mlangala are in prevalent use in the villages of Kilolo district, far from urban areas. This does not mean that these labels are not also present in urban settings. Furthermore, these two terms have different connotations in both rural and urban areas depending on, on the one hand, whether they are said by familiar people or unknowns to persons with albinism, but also, on the other, how and in which circumstances these labels are used. By contrast, terms such as albino, mtu mwenye ulemavu wa ngozi and mtu mwenye ualbino are mainly used within urban settings or larger villages close to 1154 G. Brocco

them, such as Ilula. There is even social differentiation in the use of the terms. While albino, mtu mwenye ulemavu wa ngozi and mtu mwenye ualbino are mostly used by educated individuals, particularly those from the younger generation and those working with organizations on behalf of people with albinism, zeruzeru and mwangala are utilized mostly by older farmers and peasants who have generally only attended primary school. Despite the fact that the media and governmental scapes (Appadurai 1990) have not significantly increased (bio)medical knowledge of albinism, they have changed traditional perceptions of people with the condition. This shift is visible in the appearance of new terms attached to affected individuals. While the origin of some terms, such as zeruzeru and mwangala, can only be vaguely traced back to the past, other terms such as dili, albino, mtu mwenye ulemavu wa ngozi and mtu mwenye ualbino can be assumed to stem from national and international media debates and news concerning people with albinism. Especially, the highly denigrating term dili has been widespread through the news released by the national newspaper reporting killings of and atrocities about people with albinism. By analyzing the meanings and interpretations of these terms, it is also possible to understand which ones are taken as discriminatory and which of these terms are perceived as the ‘proper’ way to define individuals affected by albinism. According to the opinions of people with albinism themselves, dili and zeruzeru are mainly considered offensive and denigrating, since the former is always threatening and objectifying, reducing its worth to the value of the (dead) bodies parts of people with albinism, while the latter is taken to highlight the supposed marginalization of people with albinism – in the past as well as the present – within their communities and the fact that they could disappear suddenly. Even though zeruzeru can be perceived by the majority of people with albinism as a denigrating label, it has also a contextual meaning because it is evaluated as offensive only depending on the way and the context in which it is uttered. Moreover, the contextual evaluation of zeruzeru within Kilolo district is also due to the fact that the label, together with albino, is present as an official term to name people with albinism in the Dictionary of Swa- hili Language. Conversely, albino, mtu mwenye ulemavu wa ngozi and mtu mwenye ualbino are perceived as ‘official’ terminologies, and thus indicate a certain degree of acceptance. Finally, each one of the terms and labels described above, apart from dili, have positive or negative meanings depending on the context in which one is Downloaded by [81.255.145.177] at 04:55 20 October 2017 ‘performing’ them and on the perception of the situations and ‘label-performers’ that people with albinism have. Language terms are part of historically positioned discourses and culturally-bound practices (Devlieger 1999b). Every single label related to people with albinism in Tanzania provides possible understandings of larger social meanings, authoritative dynamics, global–local connections and tensions between language use and the immediate experience of albinism and disability (Whyte 1995) in Tanzania. Labels for people with albinism reveal ongoing social and political discourses surrounding albinism in and outside the country and existing (dis)connections between local shared ideas and global explanations for albinism in the wake of media attention and humanitarian aids. Instead of being passive recipients of humanitarian messages and (bio)medical explanations, people with albinism are able to generate innovative ideas of their condition by, on the one hand, redefining concepts of normalcy present in the Tanzanian society and, on the other, reconceptualizing their self-perception and corporeality in relation to the global flow of ideas and Disability & Society 1155

information about albinism brought by national organizations and NGOs on their behalf. Language thus discloses marginalizing and inclusive attitudes towards people with albinism as well as their everyday struggles to be accepted by their communities.

Acknowledgements The author is grateful to the Deutscher Akademischer Austausch Dienst for funding doctoral studies at the Freie Universität Berlin Institute of Social and Cultural Anthropology, the NGO Tulime Onlus, which financially allowed previous preliminary fieldwork research in Tanzania to be carried out, and the University of Palermo which provided financial support during a previous research stay at the Freie Universität Berlin. Furthermore, the author is really thankful to Prof. Dr Hansjörg Dilger, the members of the AK Medical Anthropology group and the anonymous reviewers of Disability & Society Journal for their valuable and useful comments on the first draft of this paper. Finally, the author would like to thank all of the men, women and children of Kilolo district, who made the research possible, and his family for their support.

Declaration statement No conﬂicts of interest.

Funding The present research is ﬁnancially supported by the Deutscher Akademischer Austausch Dienst under the research grant for Doctoral Candidates and Young Academics and Scientists [grant number 57048249].

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