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Disability & Society

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Labeling albinism: language and discoursesurrounding people with albinism in Tanzania

Giorgio Brocco

To cite this article: Giorgio Brocco (2015) Labeling albinism: language and discoursesurrounding 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.

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Labeling albinism: language and discourse surrounding peoplewith 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 andterms attached to 28 people affected by albinism in villages in Kilolo district,Tanzania. Even though national and international attention to killings of peoplewith albinism has attempted to improve general knowledge of albinism andreduce discrimination, most of the community members within the study had lit-tle knowledge of the (bio)medical explanations for albinism and tended tomarginalize people with albinism. Framed within a wider moral discourse on ill-ness, disability and socially appropriate behavior, albinism is mostly consideredto be God’s will or the consequence of past misdeeds within the family, andmany 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 inTanzania.

• The study additionally takes into account the influence that national andinternational campaigns about and on behalf of people with albinism have hadon local perceptions of albinism.

• Examination of the labels and terms attached to people with albinism leads tothe analysis of the ideas and discourses surrounding albinism in Tanzania, andvice versa.

• Persons with albinism explain and conceptualize their physical condition byadopting institutional terminology introduced by western media campaigns anddebates on their behalf.

• The present study is among the first ethnographic accounts of the everydaylives of people with albinism in Africa and of the labels attached to them incommunity and media discourse.

Introduction

Following the report of the Tanzanian BBC journalist Vicky Ntetema in 2008, whichexposed the alleged outbreak of killings of people with albinism in Tanzania’s

*Email: gbrocco85@gmail.com

© 2015 Taylor & Francis

Disability & Society, 2015Vol. 30, No. 8, 1143–1157, http://dx.doi.org/10.1080/09687599.2015.1075869

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north-west regions (as well as in Democratic Republic of Congo, Burundi andRwanda), national and international media debates began to focus on the problem ofthe murders and highlighted the generally poor situation of people with albinism inthe country (Bryceson, Jonsson, and Sherrington 2010; Ntetema 2008). Soon afterNtetema 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 condemnedthe murders. The killings were predominantly explained by these actors in terms ofTanzanian ‘traditional superstitions’ and ‘witchdoctor practices,’ yet they tookalmost no notice of the sociocultural circumstances that could have caused such aphenomenon, and did not hint at the life experiences of people with albinism exceptin pitiful terms (Burke, Kaijage, and John-Langba 2014). Given such intense andfar-reaching attention to the killings, many non-governmental organizations (NGOs),such as the Red Cross, have implemented human rights programs in Tanzania todefend and support people with albinism and spread awareness campaigns on theirbehalf (Burke, Kaijage, and John-Langba 2014; Red Cross 2009). However, despitethe outcry over the killings of people with albinism in Tanzania, few scholars andjournalists have thus far focused on the everyday life experiences of people withalbinism, their families and the community contexts in which they live. Littleattention 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 communitymembers, within the villages of Kilolo district, an area in the Iringa region ofTanzania, where the research was conducted. In pursuit of this goal, the analysis isconcerned, on the one hand, with ideas and discourses that provide an explanationfor albinism and, on the other, with the labels and terms attached to people withalbinism. The first point of analysis proves useful for examining whether past ideas(i.e. those prevalent before international attention was drawn to the killings) inTanzania regarding albinism (such as albinism being a curse because of pastmisdeeds within the family) have been modified and/or combined with (bio)medicalknowledge about the congenital condition, as spread by (inter)national awarenesscampaigns. The examination of ideas and discourses includes communitarian per-ceptions of albinism, cultural assumptions about the body, and meanings connectedto physical difference (Ingstad and Whyte 1995, 4). The second point of analysisconsiders the various labels and terms related to albinism as a way in which stigmaand deviance (Devlieger 1999a) – or, conversely, attitudes of acceptance andinclusion – are articulated by other members of the community and are thus anexpression of the general ideas circulating in Tanzania about albinism. The articlewill show how persons with albinism try to explain and conceptualize their ownphysical condition by identifying themselves as disabled and by adopting institu-tional terminology generated by western media campaigns and debates on theirbehalf.

Research methodology

The ethnographic research on which this article is based took the form of narrativeinterviews, group discussions and direct and participant observation conducted over

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two periods totaling 11 months (August–November 2012 and November 2013–May2014) in Ilula ward and other villages of Kilolo district, in the Iringa region of thesouthern 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 parentsof persons with albinism or simply as community members. In addition to theseinformants, traditional healers (waganga wa jadi), NGO staff members and religious(Christian and Muslim) representatives were interviewed. In order to preserveinformant anonymity, all of the names used in this paper are pseudonyms.

Although I refer to a large number of informants and participants, the presentinquiry mostly focuses on 28 individuals (13 males, 15 females) with albinism. Theparticipants in the survey ranged in age from seven to 70 years, with a median ageof 24 years. The majority of the males with albinism had finished primary educationand were working as farmers or were unemployed. A further three participants wereemployed 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 orhad recently completed primary school. Of the female participants, six were attend-ing or had recently finished primary school, and three were attending secondaryschool. Only two women worked on farms not far from their homes (one of thesetwo women was not affected by albinism herself but was the mother of two childrenwith 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 alongthe paved street passing through Ilula ward, and additionally traded charcoal in thenearby villages. Of the respondents who were between 16 and 24 years old (andthus considered of marriageable age locally), two of the female and four of the maleinformants 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 relatedconditions resulting from a genetic mutation that causes a deficiency in melanin pro-duction (Aquaron, Djatou, and Kamdem 2009; Lund 2005). There are two maintypes of albinism and several subtypes. People with oculocutaneous albinism, thepredominant 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 isreported to have albinism (Hong, Zabeed, and Repacholi 2006) and in Tanzania onein 1429 (Cruz-Inigo, Ladizinski, and Sethi 2011; Kromberg and Jenkins 1982).

People with albinism are exposed to stigma all around the world, in the UnitedStates (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, peoplewith albinism are often either considered supernatural beings in contact with theanti-world of sorcerers (Devlieger 1995) or water spirits (Cimpric 2000; Machoko2013), or viewed as common persons who are being punished for the past mistakesof their family members (Blankenberg 2000; Djatou 2009), particularly the infidelity

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of their mothers (Görgen 2003, 59). In addition to these explanations, albinism canbe also articulated as God’s will (Baker et al. 2010; Braathen and Ingstad 2006).

People with albinism – as people with other disabilities – are mainly perceivedas ‘different’ and ‘deviant’ (Goffman 1963; Reid-Cunningham 2009; Susman 1994),and as the research shows this is particularly the case for individuals not personallyfamiliar with them. Conversely, some people with albinism are easily accepted andincluded by their families and communities (Braathen and Ingstad 2006), as is thecase in Malawi (Braathen and Loeb 2011), and they try to counter stigmatization byforming albinism associations or self-help groups; such groups in Western Africaand Central Africa include Asmodisia in Cameroon (Chelala 2008) or the TanzaniaAlbinism 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 eaterof manioc) in the sangho language, a definition that emphasizes the ambiguous sta-tus of the disability within the social sphere of the community. In Mali among theBamana and Maninka, people with albinism are called gomblè (red man) becausethey are susceptible to severe sunburn which turns their skin red (Imperato andImperato 2006). Furthermore, mzungu (white man, European) and napwere (whichrefers to a pea-brownish color) are common name-calling terms for people withalbinism 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 highlightedthe fact that the western definition of disability does not necessarily have a clearcorrespondence to how people define disability in other parts of the world (Ingstadand Whyte 1995), Groce (1999) points out that all societies and cultures donevertheless have explanations for why some individuals have physical or mentaldifferences 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 albinismhave been conducted by national organizations such as the Tanzania AlbinismSociety and international organizations such as the Canadian NGO Under the SameSun, and public debates have been held in the national media run by the Tanzaniangovernment. These efforts have, however, largely failed to increase significantly the(bio)medical knowledge of albinism at the local and rural levels; and, as my ownresearch has shown, this is especially so in more impoverished areas of the countrywhere people generally have less education. Many Tanzanians, especially those whoare poorly educated, are not aware or are only partially aware of the (bio)medicalexplanations of albinism, and this lack of knowledge complicates the process ofinclusion/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 theidea that a child with albinism is a laana (curse) to the family, others remain validand go through syncretic processes combining (bio)medical knowledge with tradi-tional conceptions and religious explanations. Certain ideas which are no longerpopular owing to the influence of schooling, (bio)medicine as well as Christianity

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and Islam (Ogechi and Ruto 2002), however, were expressed by some elders in thevillage of Pomerini. One elderly man explained, for instance, that ‘previously’ indi-viduals affected by albinism were believed not to be human, to ‘disappear’ (todayunderstood 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 Districtremarked that being born with pale skin, sandy-colored hair and light brown eyes isa plan of God (mpango ya Mungu) or a condition due the work of God (kazi yaMungu). Lepida, a 19-year-old girl with albinism who was born and still lived withher parents, affirmed that although she did not have any firm knowledge of whatalbinism is, she knew for sure that God had created her (niliumbwa na Mungu) asshe was, as ‘he created all other creatures on earth.’ A similar conception wasexpressed by Jasmin, a young mother with a daughter with albinism. When askedhow 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 depressedwhen she was born because of her white skin. I do not know the reasons why her skinis white, I cannot say anything about her body. The only thing I know is that she wasborn this way because of God’s will. (Jasmin)

According to Jasmin, God’s plan must be accepted by human beings, even if itcauses 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 alsovoiced 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 ethnicgroup that inhabits Iringa region), God (Mungu) is believed to be the primarysource from which all creatures originated, and thus he is the only one able ‘toput these creatures in order’ as well as evaluate and judge individuals’ ethicaland moral behavior (Crema 1987, 144). This conception of God, deeply influ-enced by decades of Christian evangelization as well as contact with Muslimbelievers 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 aboutvarious diseases and physical conditions. Maladies caused by God’s will there-fore fall within the normal course of things (Bellagamba 1991; Feierman 1981,355) and are seen as usual or common (kama kawaida). Within the range ofsuch diseases and conditions, albinism is even included among those inherited(urithi) from past generations. In contrast to the categories of maladies such asillnesses of man (brought about by sorcery) or of spirits (mashetani or majini),illnesses and diseases caused by God can be furthermore believed to happenwith 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 humanunderstanding, three of my informants stated that albinism may appear due to a lackof iron (madini) in the blood of affected persons. This explanation was expressed byMaria, a 17-year-old girl with albinism who was attending the special secondaryschool for girls with disabilities:

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My skin is white because there is a lack of iron in my blood (kuna ukosefu wamadini). 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 thinkit 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 acondition basically due to God’s will that is manifested as a lack of iron in theblood.

In cases where there were no other persons affected by albinism in pastgenerations (ki/vizazi) or among kin ties (u/koo), some interviewees added that adeficiency of iron, aside from being a divine plan, could be passed by themother to her soon-to-be-born baby. Albinism is thus perceived to be owing to aplan of God that directly involves the relatives and/or mother of affected individ-uals. When neither of the parents have albinism themselves, it is not by chancethat women are the first to be blamed by their husband’s relatives, and conse-quently by members of the community, for being the primary cause of albinismin their children. The most frequent epithet addressed to these mothers is ‘sickperson’ (mtu mgonjwa/watu wagonjwa). According to the data collected, whilewomen with albinism are often considered watu wagonjwa, those who are notthemselves affected by albinism, and are thus categorized as ‘normal women’(wanawake wa kawaida), can come to be labeled as wanawake wagonjwa whenthey have a child with albinism. In cases where there are other persons withalbinism in past generations, however, the mother of a child with albinism is notheld responsible for her child’s condition, and albinism is therefore classified as‘normal.’ No matter whether the woman is affected by the congenital conditionherself, the most important element of the dowry that a bride-to-be has to assureis that she will give birth to healthy (and black) children. The only way that awoman can assure she will not be considered ‘sick’ is to live a ‘moral’ life andcommit no misdeeds. In this case, God will not punish her and her entire familywith a child with albinism.

An example of this social attitude is represented by the case of 15-year-oldFadhili. When his family members were asked about their reaction to having a childwith albinism, Fadhili’s mother said that when she and her husband looked at thewhite skin of their son, they started wondering how it could have happened. Forseveral 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’smother, ‘made us really relaxed, because since then we have understood that Fadhiliis not different from other persons but for his white skin.’

Albinism is thus often considered to occur due to God’s will. The Creator’sdivine plan, although unknown to human beings, materially appears as a lack ofiron in the blood. When albinism is not present in past generations or in othermembers of the family, however, it is believed to be inherited from the mother ofthe individual affected. Obviously, such ideas regarding albinism strongly influ-ence the self-esteem of people affected by the condition. People with albinismmust constantly prove that they are as normal and human as other persons.Julius, a farmer with albinism, stated: ‘We are human beings (binadamu), but wehave always to prove and explain it to the others.’

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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 withalbinism ‘get languaged’ (Ramanathan 2009) by community and family members inTanzania. Language and labels are in fact not only the medium through which ‘ourengagement with our worlds happen[s] but also the medium through which ourcollective 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 dis-courses on disability and albinism emerge, but also that language itself constructsideas and discourses about disability and albinism (Ramanathan and Makoni 2007).

In general, labels for people with albinism testify that individuals with albinismare perceived as different by other community members, but they also reveal theassignment of social importance to that difference (Green et al. 2005, 201). In otherwords, through the examination of the language and terminology of albinism, it ispossible to understand how notions of normalcy and difference are produced andreproduced (McPherron and Ramanathan 2011). Previous studies on the languageand labels of disability have highlighted how, on the one hand, name-calling termsshape understandings of the bodies of persons with a disability within a communityand, on the other, how they reflect relations between norms that, in conjunction withother societal and (bio)medical tropes, shape a shared visual field of normalcy andbodies 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 arelabeled (Avoke 2002). Derogatory terms for people with a disability express how acommunity perceives them as less than human, and they create images and codesfor particular conditions and disability in general (Corbett 1996). Labeling andterminologies attached to individuals with a disability thus represent clues about thesociety within which these persons live (Bolt 2005) and how this environment initself may be disabling. The community, furthermore, while highlighting the per-ceived difference of persons with a disability from other individuals, influences suchpersons’ self-perceptions and self-esteem (Corbett 1996). This constitutes a furtherlevel of disability for persons with a disability and albinism.

Discriminatory language has just as much power to exclude as other forms ofmarginalization (Gottlieb 2001; Singal 2010). It therefore represents an effective lensthrough which to analyze the social position and considerations of people with a dis-ability – in this case albinism – within the community under study. For the purposeof the present article, the labels attached to people with albinism also highlight howperceptions of albinism have changed over time, and how this shift has been par-tially influenced by national and international campaigns and media debates strivingto create a stronger sense of inclusion for non-normative social actors (Ginsburg andRapp 2013).

In Tanzania, people with albinism have been traditionally named zeruzeru, alabel that is generally translated as ‘ghost,’ even though it is the official term forpeople with albinism according to the Dictionary of Swahili Language (AA.VV.2005). According to the Dictionnaire Swahili-Français, its origin can be traced backto idioms stemming from Bantu languages such as Kizaramo and Kizigua, in whichzeru means cendré (Engl. ashen) and blanc (Engl. white) (Institut d’Ethnologie1939, 1039; Lagercrantz 1979, 62; Schühle 2013, 9). In the Iringa region and Kilolodistrict, although the meaning of this term is known by the majority of the

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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 fieldworkexperience on which this article is based, although it is impossible to establish withcertainty whether the word always had negative connotations (McBride and Leppard2002, 635; Schühle 2013), at least since the beginning of public attention to thekillings of people with albinism in 2008, many persons affected with albinism (aswell 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 perceivezeruzeru 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, theseare not denigrating words at all. Perhaps they could become offensive if the individ-uals’ attitude towards me is offensive as well.

According to Erik, some terms therefore acquire meaning depending on the socialactors using them. In order to determine the meaning of a word, it is important totake 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 usedthroughout the Kilolo district together with Kiswahili) equivalent of the Kiswahiliword zeruzeru. Even though largely substituted by zeruzeru in daily conversation,mlangala is also widely perceived as offensive. The main reason for this lies in thefact that both of the terms refer to past times in which individuals with albinismstood for bad omens within family and community settings, and were said to ‘disap-pear,’ referring to their possible murder by their family members and burial withinthe house.

While the matter of the positive or negative connotations attached to the wordszeruzeru and mlangala is still open, there is a relatively new label for albinism thatis 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 ofthe body parts of people with albinism. Dili has come to be widely used to offendpersons with albinism, probably as the result of news released by the (inter)nationalmedia of the killings of people with albinism. According to Anjela, a woman withalbinism:

There have always been some persons who call me zeruzeru, but I never got angrywith them because this word is not an offence. Otherwise, I always get angry whenstrangers 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 peoplewith albinism as mere objects who can be killed and their body parts sold on theblack market. Moreover, the term highlights the problems that many people withalbinism face in their interactions with unfamiliar persons. Those who do not belongto 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 ofTanzania, many individuals with albinism are highly frightened of strangers. Theirfear increases when they travel outside their own villages and are teased with thenickname dili. The words of Benjamin, a 70-year-old farmer with albinism, areexemplary:

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Here the situation is relatively quiet, but sometimes when outside of the villagestrangers call me dili. Sometimes I felt really frightened because it could happen thatone 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 initialsign of subsequent aggression plotted by other individuals. This is a fear that hasgrown since the widespread media attention to the killings. Nonetheless, Benjamin’sstatement also reveals another truth, namely that most people with albinism experi-ence marginalization and stigmatization when they come into contact with personswhom they have never met before. In contrast to this, they affirmed that they areaccepted by villagers and neighbors; people who are, more than strangers,acquainted with their physical appearance. Villagers might therefore condemndiscriminatory attitudes toward people with albinism and even try to protect them.Jasmin explained:

When my daughter [with albinism] was attending primary school, she faced manyproblems. During that time, many classmates of her used to laugh at her, tease her forher 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 asother children.

While strangers might often refer to people with albinism using the term dili, indi-viduals with albinism living in Ilula ward (although much less so for people inKilolo 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/maal-bino (individual[s] with albinism or albinos) or watu/mtu m/wenye ualbino (individ-ual[s] with albinism). Since the widespread news reports surrounding the killings,the terms mtu mwenye ulemavu wa ngozi, albino/maalbino and watu/mtu m/wenyeualbino have been used in the official documents of NGOs and by state representa-tives. Spread by the national media, these terms consequently became more com-monly used, at least among educated Tanzanians in urban areas, although evenamong the poorly educated respondents some people with albinism also referred totheir condition in terms of disability. This could be explained by the fact that mostof the interviewees were involved in or in some way connected to the public cam-paigns on their behalf that took place in Kilolo district.

In addition to the terms examined up to now, another widespread label used torefer to an individual with albinism is mzungu (white man). This Kiswahili wordcommonly refers to white people of ‘western’ origin. When applied to people withalbinism, its connotations are ambiguous, being either offensive but also possiblycomplementary. The alleged denigrating power of the term is achieved by highlight-ing the stark contrast between the poverty of individuals with albinism and the higheconomic 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 acquiredwealth and status, the term is taken as a compliment. According to the words statedby one of the research’s key informants:

If I call mzungu someone who is a poor and unemployed albino, it means I want totease him because he is not as rich as a white man is. But if I use mzungu for referringto Keisha [a famous Tanzanian singer with albinism], I give her a compliment sinceshe has lots of money.

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

Discussion: reducing stigma in the contest of local–global intertwinements

Many awareness-raising campaigns on behalf of people with albinism have beencarried out by different actors within the Tanzanian public arena. The Tanzaniangovernment, through public speeches by President Kikwete and other members ofparliament, has condemned the killings of people with albinism and has tried toenhance their inclusion within their communities. One of the instruments utilized bythe government has been the inclusion of people with albinism in special schools forchildren with other disabilities (especially schools for children with visual impair-ments). Therefore, the Kilimanjaro Christian Medical Center, a national hospitallocated in Moshi, has launched – in collaboration with the Tanzanian Ministry ofHealth, Under the Same Sun and Standing Voice (an NGO from the UnitedKingdom) – a project for the distribution of sunscreens, also providing patients withalbinism free surgical treatments for skin cancer. Furthermore, international NGOssuch as Under the Same Sun, founded in 2008 by Peter Ash, an entrepreneur withalbinism from the Evangelical field, have distributed promotional materials such asposters, desk calendars and flyers throughout the country to sensitize the populationto the theme of albinism (these posters were observed during the research in theKilolo District Office as well as in the houses of some informants with albinism).These activities have been conducted in collaboration with the Tanzania AlbinismSociety, 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 andIljumaa) and radio (e.g. Radio1Stereo, TBC and Radio1Africa) and television (e.g.ITV and Star TV) stations, whose primary language is Kiswahili, have reached themajority of the Tanzanian population, at both the national and local levels, withpleas 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, whomostly live in rural areas in conditions of economic poverty and include both per-sons with and without albinism, continue to explain albinism in terms of religiousdiscourses referring to the will of God. Such religious ideas have been interpolatedwith (bio)medical explanations for albinism by the younger generation living in vil-lages closer to urban areas. For these latter interviewees, albinism is due to a divineplan that appears as a lack of iron in the blood of persons with the condition. Thisparticular explanation for albinism can be interpreted as an example of the introduc-tion of biomedical conceptions into traditional religious discourses, thus producingnew meanings (Pool 2003).

Aside from new explanations and discourses, media debates and awareness cam-paigns have (sometimes unwittingly) also contributed to the spread of new labelsand terminologies for people with albinism. The diffusion among the population of

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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 andthe European Union) and through international campaigns for the rights of peoplewith disabilities (e.g. the UN international Albinism Awareness Day, adopted in2014), is not, however, uniform and unvarying. Despite this, individuals with albin-ism prefer being called maalbino and/or watu wenye ulemavu wa ngozi and/or watuwenye ualbino because through these terms of international origin they can gain arecognizable status within their own local communities. Such a status – which isdetermined and shaped indirectly by national and international political authorities –could be seen as displacing citizenship between the public domain and the domesticspheres of social life (Das and Adlakha 2001). People with albinism’s desire to becalled maalbino and/or watu wenye ualemavu wa ngozi and/or watu wenye ualbinois 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 albinismexperience their being-in-the-world (Csordas 1994, 2011) as persons with albinism.Their lived experience of being-in-the-world involves both the bodily internalizationof external influences as well as the externalization of bodily processes out into theworld (Csordas 1994, 2011). The fact of being defined as a person with albinism –and so with a disability – therefore allows these individuals to position themselvesin their communities using the power of global flows of information and labels atthe local level, while endeavoring to gain political and social status within their localcommunities and Tanzanian society as a whole.

In a disabling society – as Tanzanian society might be described with regard tothe (non-)inclusion of people with albinism – the definition of being a person with adisability constitutes a way for persons with albinism, on the one hand, to findalternative and more suitable epistemologies for albinism and, on the other, toexplain to other individuals why they cannot do certain things which people withoutdisabilities can do (e.g. due to the hypopigmentation of their skin it is not possiblefor them to carry out agricultural work under the sun as other black-skinned peopledo, 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 physicalinability to carry out given daily tasks, hails from the idea of normalcy withinTanzanian society in which every individual is expected to perform all duties with-out asking for support from others. According to some subjective experiences ofpeople with albinism involved in the research, the concept of albinism can be decon-structed by broader notions of kinship and different perceptions of the conditionwithin the family of individuals with albinism.

Conclusion

As has been shown, terms for people with albinism such as zeruzeru or mlangalaare in prevalent use in the villages of Kilolo district, far from urban areas. This doesnot mean that these labels are not also present in urban settings. Furthermore, thesetwo 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 personswith albinism, but also, on the other, how and in which circumstances these labelsare used. By contrast, terms such as albino, mtu mwenye ulemavu wa ngozi and mtumwenye ualbino are mainly used within urban settings or larger villages close to

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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 mostlyused by educated individuals, particularly those from the younger generation andthose working with organizations on behalf of people with albinism, zeruzeru andmwangala are utilized mostly by older farmers and peasants who have generallyonly attended primary school.

Despite the fact that the media and governmental scapes (Appadurai 1990) havenot significantly increased (bio)medical knowledge of albinism, they have changedtraditional perceptions of people with the condition. This shift is visible in theappearance of new terms attached to affected individuals. While the origin of someterms, 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 mwenyeualbino can be assumed to stem from national and international media debates andnews concerning people with albinism. Especially, the highly denigrating term dilihas been widespread through the news released by the national newspaper reportingkillings of and atrocities about people with albinism.

By analyzing the meanings and interpretations of these terms, it is also possibleto understand which ones are taken as discriminatory and which of these terms areperceived as the ‘proper’ way to define individuals affected by albinism. Accordingto the opinions of people with albinism themselves, dili and zeruzeru are mainlyconsidered offensive and denigrating, since the former is always threatening andobjectifying, reducing its worth to the value of the (dead) bodies parts of peoplewith albinism, while the latter is taken to highlight the supposed marginalization ofpeople with albinism – in the past as well as the present – within their communitiesand the fact that they could disappear suddenly. Even though zeruzeru can be per-ceived by the majority of people with albinism as a denigrating label, it has also acontextual meaning because it is evaluated as offensive only depending on the wayand the context in which it is uttered. Moreover, the contextual evaluation of zeru-zeru 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 mwenyeualbino are perceived as ‘official’ terminologies, and thus indicate a certain degreeof acceptance. Finally, each one of the terms and labels described above, apart fromdili, have positive or negative meanings depending on the context in which one is‘performing’ them and on the perception of the situations and ‘label-performers’ thatpeople with albinism have.

Language terms are part of historically positioned discourses andculturally-bound practices (Devlieger 1999b). Every single label related to peoplewith albinism in Tanzania provides possible understandings of larger socialmeanings, authoritative dynamics, global–local connections and tensions betweenlanguage use and the immediate experience of albinism and disability (Whyte 1995)in Tanzania. Labels for people with albinism reveal ongoing social and politicaldiscourses surrounding albinism in and outside the country and existing (dis)connec-tions between local shared ideas and global explanations for albinism in the wake ofmedia attention and humanitarian aids. Instead of being passive recipients of humani-tarian messages and (bio)medical explanations, people with albinism are able togenerate innovative ideas of their condition by, on the one hand, redefining conceptsof normalcy present in the Tanzanian society and, on the other, reconceptualizingtheir self-perception and corporeality in relation to the global flow of ideas and

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information about albinism brought by national organizations and NGOs on theirbehalf. Language thus discloses marginalizing and inclusive attitudes towardspeople with albinism as well as their everyday struggles to be accepted by theircommunities.

AcknowledgementsThe author is grateful to the Deutscher Akademischer Austausch Dienst for funding doctoralstudies at the Freie Universität Berlin Institute of Social and Cultural Anthropology, theNGO Tulime Onlus, which financially allowed previous preliminary fieldwork research inTanzania to be carried out, and the University of Palermo which provided financial supportduring a previous research stay at the Freie Universität Berlin. Furthermore, the author isreally thankful to Prof. Dr Hansjörg Dilger, the members of the AK Medical Anthropologygroup and the anonymous reviewers of Disability & Society Journal for their valuable anduseful comments on the first draft of this paper. Finally, the author would like to thank all ofthe men, women and children of Kilolo district, who made the research possible, and hisfamily for their support.

Declaration statementNo conflicts of interest.

FundingThe present research is financially supported by the Deutscher Akademischer AustauschDienst under the research grant for Doctoral Candidates and Young Academics and Scientists[grant number 57048249].

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