UNIVERSITEIT GENT

FACULTEIT POLITIEKE EN SOCIALE WETENSCHAPPEN

Between a hazy community and a concrete elite: An ethnographical deconstruction of albinism awareness campaigns by a local NGO in Tanzania

Wetenschappelijk artikel Word count: 9629

Jean-Baptist Vandeneede

MASTERPROEF Conflict & Development

PROMOTOR: (PROF.) DR. Karen Büscher COMMISSARIS: (PROF.) DR. Maarten Hendriks

ACADEMIEJAAR 2015 – 2016

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Inzagerecht in de masterproef (*) Ondergetekende, Vandeneede Jean-Baptist geeft hierbij toelating / geen toelating (**) aan derden, niet-behorend tot de examencommissie, om zijn/haar (**) proefschrift in te zien. Datum en handtekening 15 augustus 2016

Deze toelating geeft aan derden tevens het recht om delen uit de scriptie/ masterproef te reproduceren of te citeren, uiteraard mits correcte bronvermelding. ----------------------------------------------------------------------------------(*) Deze ondertekende toelating wordt in zoveel exemplaren opgemaakt als het aantal exemplaren van de scriptie/masterproef die moet worden ingediend. Het blad moet ingebonden worden samen met de scriptie onmiddellijk na de kaft. (**) schrappen wat niet past

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Between a hazy community and a concrete elite: An ethnographical deconstruction of albinism awareness campaigns by a local NGO in Geita Abstract Background: In recent years attacks on persons with albinism (pwa) were picked up by different media. Mainly in Tanzania pwa are targeted, especially in regions where albinism is common. They are stigmatized and are discriminated in daily life. Local NGOs have been starting to specialize in spreading awareness about albinism and the false beliefs that are still present. Goals/relevance: The academic world, however, has carried out very little research about how NGOs address the problems associated with albinism in Tanzania. The goal of the research was to deconstruct the discourse as well as the actions with regard to the awareness campaigns created by a local NGO NELICO in Geita, Tanzania. Method: An ethnographical approach was being used to get insights in the narratives and activities of one specific NGO and its awareness campaigns on the pwa issue. On the basis of ethnographic observations and qualitative in-depth interviews with members of the NGO and individuals closely related with the awareness campaigns, insights were provided to the research. Results: The paper argues that community participation (of pwa), in the setting of spreading albinism awareness, remains a buzzword for the NGO. However, this official discourse shows a clear discrepancy with the daily practices and the implementation of their discourse. In reality, pwa do almost not ‘participate’ in the campaigns as a ‘community’, and those who are the main participants of the campaigns appear to be part of the local governmental and non-governmental elite. Tension between a discourse of a bottom-up argument versus a top-down practice is found. Government officials, media, and donors have a clear impact on the campaigns where NELICO has to try to keep in control. Room for participation of the community is limited, especially for pwa themselves. Key words: albinism; ethnography; deconstruction; awareness; NGO; Tanzania

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Content article Introduction............................................................................................................................................. 8 Albinism, development and NGO-approach: previous research and debates...................................... 11 ‘Witchcraft’ ........................................................................................................................................ 11 Development anthropology .............................................................................................................. 12 Power, knowledge and elites ............................................................................................................ 13 Methodology ......................................................................................................................................... 14 Location / site .................................................................................................................................... 14 Method .............................................................................................................................................. 15 Ethical considerations & challenges .................................................................................................. 16 Analysis .................................................................................................................................................. 17 local landscape .................................................................................................................................. 17 NELICO ........................................................................................................................................... 19 Government .................................................................................................................................. 20 Current situation ........................................................................................................................... 21 The discourse of NELICO ................................................................................................................... 22 Community participation in practice................................................................................................. 24 The power of/over the community: opportunities ........................................................................... 26 Discussion .............................................................................................................................................. 27 References ............................................................................................................................................. 29 Appendix (CD-ROM) .............................................................................................................................. 33 Content article ................................................................................................................................... 33 Summary in Dutch ............................................................................................................................. 33 Acknowledgment............................................................................................................................... 33 Extra information about interviews: Method ................................................................................... 33 Interviews: Coded 2nd round (in remarks) ......................................................................................... 33 Interviews: Nvivo Method ................................................................................................................. 33 Topiclist and interviewquestions....................................................................................................... 33 Garantees before fieldresearch ........................................................................................................ 34 Passages from diary........................................................................................................................... 34 Analysis .............................................................................................................................................. 34 Location ............................................................................................................................................. 34 Respondents overview ...................................................................................................................... 34 Pictures for analysis ........................................................................................................................... 34 VLIR grant .......................................................................................................................................... 34 6

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INTRODUCTION On the last Sunday of October 2015 national elections were held in Tanzania. In the run up to the elections, different media and organizations warned for possible negative consequences of the upcoming elections, in particular in relation to attacks on persons with albinism (pwa). In Tanzania, specifically in the northwestern lake region, there have been violent attacks on pwa in recent years. Academic research, media and United Nations (UN) reports ascribe these attacks to superstition in the society derived from traditional doctors who spread false beliefs (United Nations, 2016). These false beliefs consist of the idea that people can become prosperous when they bring an albino body part to a traditional doctor, often known as witchdoctors, to make a ‘magical brew’. Because albinism is relatively common in this region, 1 out of 4000 births, it has a high visibility, but quite a low in-depth understanding of the phenomenon (Ackley, 2010; Cruz-Inigo, Ladizinski, & Sethi, 2011). Campaigns run by national and international organizations try to address this problem and raise awareness of what albinism is and especially what it is not. These campaigns often include addressing the actual violence by supporting families of victims and working closely with the police. Nationally there are different measures taken to stop the attacks, but pwa do not experience substantial changes in their lives (United Nations, 2015). Measures put in place by the government are focusing on a legal framework to punish the perpetrators. In 2016, laws were approved by parliament to discourage people from getting involved in superstitious practices which harmed pwa, but the implementation of these laws is still in progress. Locally, steps have been taken to tackle the problem with different local groups in Geita 1 that are involved in the matter of albinism. Local government agencies have to implement the national policies, but in practice there are a lot of obstacles. Cases of violence against pwa are reported to the police, who are situated in Geita City. Most cases, however, occur in the remote village areas. Most international non-governmental organizations (NGOs) address the problem due of lack of knowledge about albinism. Local NGOs focus on awareness campaigns to reduce violence against and the stigmatization of pwa, which the NGOs perceive as an issue for the ‘community’. Due to high numbers of national and international NGOs in the area, local and national government institutions are neglecting their responsibility to fully address the problem of stigmatization and discrimination of pwa 2. This paper, however, rejects the idea that there are only benefits for the government when they transfer their responsibilities. Local government officials, NGOs and traditional healers are the actors who are closely involved in the issue of attacks on pwa. Analyzing the complex relations between different groups of actors, involved in the issue of albinism, 1 2

In this research Geita is ‘Geita City’ but it is also a district and since 2012 recognized as a ‘region’ in Tanzania Own research in the area in 2014 and 2016

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is not only crucial to understand how the problem is being addressed, but also important to provide insights in the awareness campaigns of the local NGO ‘New Light Children Center Organization’ (NELICO). Power and knowledge are central in the relations and interactions and strongly determine social relations (Foucault, 1982). Power and who has the power will be studied to examine NELICO and their position in relation to albinism awareness campaigns. It is done to deconstruct the awareness campaigns of NELICO and more specifically to deconstruct the discourse, the (actual) practices of the NGO and the possible outcomes created by NELICO. Now one year after the elections there can be noticed that the number of attacks on pwa in Tanzania was not as high as some expected 3. It is worth taking a closer look at awareness campaigns that have been launched on albinism by NELICO, a local NGO. For greater insight, it is essential to explore both the content and goals of NELICO. This paper explores the role of this NGO in the awareness campaigns about albinism and presents a deconstruction of their campaigns and discourse. It examines what they say they do, what the real implementation is and how pwa perceive the campaigns. While most of the academic literature on issues of albinism is situated within the biological discipline (Manga, Kerr, Ramsay, & Kromberg, 2013), this study is situated in the academic debates of development anthropology. This research makes an in-depth analysis of one particular actor, the national NGO ‘NELICO’, and its position and role in the approach of the ‘problem’ of albinism in Tanzania and more specifically in the Geita region, where there are frequent reports of albino killings. This study will also examine the complex relations between NELCIO and different other local actors. In combination with the in-depth-analysis of NELICO, this leads to insights to deconstruct the awareness campaigns. Close partners of NELICO are some international NGOs like Plan International and Under The Same Sun (UTSS), local authorities and pwa themselves. Because these are the partners in their official discourse, these actors are being interviewed to research what the real implementation and effects of the campaigns consist of. The reason to conduct research in this particular area is because of the uncertain situation for pwa in Geita. Evidence shows that this group is vulnerable for health problems, such as skin cancer, and they also are targeted for discrimination as a result of stigmatization and false perceptions (Ackley, 2010; Masanja, Mvena, & Kayunze, 2014; Wilson, 2015). Research on albinism in Tanzania is still in the initial stage and studies on how campaigns on albinism are conducted and what level of impact they have, are non-existent. Previous research concentrated on the stigmatization of pwa in Tanzania, where pwa themselves are seen as actors with very little agency

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Own research in the area in 2016

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(Ackley, 2010; Cruz-Inigo etal., 2011). 4 Anthropological studies about NGOs supporting pwa in Tanzania have only been carried out by one researcher in the last year (Brocco, 2015; Brocco, 2016). The relevance of this study lays in its specific focus on albinism and the deconstruction of the discourse and practices of an NGO, NELICO, around the topic of awareness. Together with the existing gap in the academic literature, in which an ethnographical approach has not yet been taken, it was the decisive factor to conduct the research. This study focusses specifically on albinism and deconstructs the discourse and practices of an NGO: NELICO, with regards to awareness raising. The central argument of the study is that NELICO creates a bottom-up discourse, where community participation is strongly encouraged, but that they implement a strong top-down approach. A clear discrepancy between both has multiple reasons. Firstly, donors and (inter)national government authorities expect that the community is involved in the awareness campaigns in order to get positive outcomes. Secondly, NELICO operates in a difficult and precarious environment: financial support is scarce and more NGOs in the region are specializing in albinism matters. This leads to a situation where NELICO tries to maintain control, and community participation is consequently reduced. Thirdly, the board is not always conscious that its actions are limiting community participation. Partly this happens unconsciously because they do not have the means and resources to involve the community in setting up an awareness campaign. It is not with bad intentions that NELICO operates in this way, but because of what (inter)national partners and donors expect from a well-functioning NGO. Also the involvement of mainly elites in the campaigns is due to the specific structure of the NGO and the campaigns. Elites, like local authorities and directors of NGOs, are using these campaigns to strengthen their position and creditability in the society. The remainder of this paper proceeds as follows: the next section explores the contextual background of the social and physical insecurity of pwa in Tanzania and provides an example of an NGO awareness campaign with a specific focus on elites and the community. The role of NGOs in this kind of setting, with their campaigns, are provided to embed the study in current debates. This study is embedded in the academic disciplines of 'anthropology of development' and 'development anthropology'. The following section discusses the methodology, where the ethical dilemmas of the research are also examined. The method of the qualitative interviews takes a central role in this part. Ethnography is the method which has been used and seemed to be appropriate to deconstruct the development discourse of the campaigns and NELICO. The argument for this lays in the opportunities given by ethnography. It gives the possibility to explore a domain where previous research is scarce. Interviews and close participation with the NGO, in relation to the campaigns, provides meaningful insights. The third section presents the findings of the research. There is a discrepancy between the

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Contested by own research in 2014

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bottom-up discourse NELICO states it does and the reality of their top-down approach to work and campaigns.

ALBINISM, DEVELOPMENT AND NGO-APPROACH: PREVIOUS RESEARCH AND DEBATES ‘WITCHCRAFT’ According to the literature, Witchcraft seems to play an important role in certain specific areas in Africa in health care (Adjiwanou & LeGrand, 2014; Baker, Lund, Nyathi, & Tayleret, 2010; Braathen & Ingstad, 2006; Hong, Zeeb, & Repacholi, 2006;). The World Health Organization (WHO) is one of the institutions which provides numbers and statistics about the use of traditional medicine in African countries. The WHO estimates that in Africa eighty percent of the population relies or depends on this kind of primary healthcare (WHO, 2003). Research has concluded that witchdoctors are the source of the attacks, because they spread the idea that body parts of pwa can bring fortune. The body parts, processed in a mixture, have to be brought to the doctor, who knows what to do to get the desired result. In literature witchcraft has mainly a negative connotation (Mesaki, 2009; Douglas, 2013; Sanders, 2003), even the terminology for this kind of medicine has negative connotations. Instead of the more neutral term ‘traditional healer’ 5or ‘medicine man’, the common description remains witchdoctor. Media, NGOs and government officials use this description. The WHO uses the term traditional medicine, but in their definition they use a non-neutral wording. In a special document they evaluate what traditional medicine is and more, they give guidelines on how research can study this in detail. It seems quite objective but between the lines people can read a sceptic attitude against traditional medicine and its practitioners. Although the practices of these witchdoctors are seen as primitive (Austen, 1999; Cimprin & UNICEF, 2010; Douglas, 2013), many people are using this form to get access to health care in Tanzania (WHO, 2013; Stanifer et al, 2015). The idea of a primitive form of medicine is based on the notion that the doctors have supernatural qualities and are using magical powers. This stands central in the discourse of opponents to traditional medicine. This research does not engage in the debate about the benefits and disadvantages of this kind of medicine but it tries to go beyond the negative assumptions.

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The article will use the term ‘traditional doctor’

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DEVELOPMENT ANTHROPOLOGY Anthropology is one of the first disciplines which studied the phenomenon of witchcraft in relation to albinism (Douglas, 2013). This discipline explores domains where previous research is absent or limited at present. A historical overview and socio-economic analysis is often the key to explain phenomena. An anthropological approach with an ethnographical method seemed suitable to explore development debates in the domain of discourse creation by NGOs. The specific topic on albinism makes it a first step to deconstruct the activities of an NGO specializing in raising awareness of albinism. This research examines how the campaigns are in reality and if NELICO uses an inclusive approach. Inclusion is essential for effective community participation, especially for people with disabilities (Milners & Kelly, 2009). Insights of development anthropology and ethnography are used to deconstruct the campaigns of NELICO. These studies make critical deconstructions of how these NGOs function and what impact they have. Many anthropologists have unveiled discourses (Lehmann, 1997), especially in the postmodern tradition anthropologist try to deconstruct the discourse and language from NGOs (Linstead, 1993; Gardned & Lewis, 1996). This exploration of discourse helps to unmask ‘hidden’ or implicit agendas of organizations and their members. One of the first steps for a critical deconstruction of a development discourse by the NGO is to provide a description of the landscape. Previous studies give some necessary insight for a critical analysis of the function. The composition and efficiency of NGOs are only a couple of topics for development anthropologists (Hilhorst, 2003). Complexity stands central in the ethnographical approach, which will be also confirmed by this research. A second step is to see who the different actors are who are related to the campaign or action. The purpose for this is to see who in the campaigns will be examined to give insight in the working of the campaigns and the consequences. The development practices are often different from the discourse by an NGO, but the mechanism behind it is not always explained. With central concepts and an ethnographical approach a deconstruction of the discourse in the campaigns is elaborated. The central concepts in this paper are: community, participation, power and grassroots. From an ethnographical approach these concepts are being studied. An insider perspective is being used to examine how these concepts are fulfilled by NELICO in their campaigns. The concept of community and specifically ‘community participation’ was first examined in the 1950’s (Chowdhury, 1996). In the 70’s it became quite popular (Cornwall, 2000), but it seems to be losing the glamour of the 1970’s and 1980’s in recent years. However this is contested by the results of this research. In academic debates community seems to be a concept that has lost some of his power in the development discourse (Cornwall, 2007). This research questions this because albinism is a topic that only recently arose on the (inter)national agenda of NGOs, donors and government. So the question ‘who is the community for NELICO?’ has to be elaborate. Previous 12

research defines it on different elements. It can be in geographical terms, but also in cultural ones (Brown, 2004). In this research this narrow definition of community is not being used. Community in this study is defined as a feeling. ‘The’ community is after all an imaginary construction and is not objectively observable (McMillan & Chavis, 1986; Ledwith, 2011). NGOs often try to give a simple image of the community for their cause. When they can prove that there is a homogeneous community they can get funds more easily (Gilfoy, 2014). A key question linked to this concept is: ‘Is the target group, which is seen as a community, really being involved?’ (Cornwall, 2007). Community is also a concept where the definition is strongly influenced by the context in which it occurs. Here we can see that the liberalization of services in Tanzania had a ‘positive’ influence on an upcoming discourse about (community) participation (Freire, 1971; Fowler, 1996) and a demand for accountability in the NGO-world (Fox & Brown, 1998). More responsibilities were given to the private sector, so local NGOs arose and settled down on specific themes. International trade agreements and liberalization accelerated this process, a process in which the role of the World Bank cannot be underestimated. Later on the government picked up some of their duties, but in the case of albinism this evolution did not take place. The reasons for this are twofold. First, the violence was not perceived as big problem by the people, in fact, many people were unaware of the incidences. Secondly the government had set other priorities between 2006-2010 in comparison with 2013-2018 6.

POWER, KNOWLEDGE AND ELITES Often the assumption is being made that NGOs arise because there is a need in the community, where the government falls short. For a part this assumption can be supposed correctly, but this and much other research does not follow this idea completely (Fisher, 1997; Call, 2008). The concept of community (participation) in this research is being linked to the notion of grassroots approach by NGOs. Academics have debates whether NGOs are more focused on a grassroots approach in their way of working or not (Fox & Brown, 1998). A grassroot approach would mean that the issue of albinism came on the agenda because of pwa themselves and that pwa have the power in the NGO and the agenda of the campaigns. NELICO is a local NGO, which could be an indication that they started from the grassroots and have a bottom-up approach, in contrast to international NGOs which are often viewed negatively due to their bureaucratic way of working (De cordier, 2013). The idea that NGOs have a more bottom-up approach, inspired the research question of how awareness campaigns are being held by NELICO both in their discourse as in real practice. Bottom-up, or grassroots organizations were welcomed warmly by the international 6

Report of the National Institute for Medical Research http://www.nimr.or.tz/national-health-researchpriorities/

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community (Alvarez & Escobar, 1992). But soon after the enthusiasm, the grassroots movement was evaluated critically from the academic world (Lehmann 1997). This envisioned the critical approach in this study on NELICO as an NGO specialized in albinism matters. A deconstruction of the actors in the development sector is present in the deconstruction of a discourse by an NGO (Hilhorst, 2003; Shivji, 2007). This study sees the members of NELICO as actors who give meaning to their situation and by their social relations structure their reality (Schutz, 1970; Tajfel, 2010). Power and power relations are present in every society, but especially in societies where the inequality is high. Patronage is very common to get jobs, to get into good schools or to improve your way of living in Tanzania. The idea of Foucault, that power can only exist because of the social relations (Foucault, 1982), has been elaborated on by development studies to study NGOs and the social relations they have (Escobar, 1984). The vision of Foucault in development studies is useful in revealing the important assumptions about how development should be achieved by the NGO and the processes with NGO-funders and the their relations. It can reveal what NGOs state they do and what they actually do (Escobar, 1984). Directors of NGOs, donors and local authorities are important actors in the development world. They regularly use the concept of community participation to promote inclusiveness (Maginn, 2007; Sihlongonyane, 2009). Often there is a hidden agenda behind these actions which leads to governmentality (Grue, 2009). It can strengthen their position and this will be examined. Finally in power relations, language plays a crucial role. People who can spread a certain message and have control over what people talk about in the society have a specific position in the society. Research of Alfini and Chambers (2007) focusses on the language that is being used in the development aid sector. The English language plays a dominant role in the development sector and this can affect who can participate and who cannot (Alfini & Chambers, 2007). Literature often suggests that power is held by very few, particularly those with elite positions (Mills, 1956). This has consequences for the ordinary citizen for whom the actions are meant. It would suggest that pwa are relatively powerless and are subject to ‘manipulation’. In combination with the idea that language and knowledge is power, it is interesting to find out who has access to the knowledge around albinism, who can participate in actions and who benefits from it.

METHODOLOGY LOCATION / SITE Research was undertaken in one site in Tanzania, namely Geita, where NELICO is focusing their activities. Approval for study was granted by relevant regional boards, in particular NELICO and local authorities. The location of NELICO is situated in the northwest of Tanzania and more specifically inthe lake area. The period of the fieldwork was in January-February 2016. The reason for 14

conducting research in this area was the frequency of attacks reported by the media on pwa in the Geita Region. The high frequency of attacks is partially a result of mining and fishing activities. In these occupations there is still a high level of superstitious belief, which is mainly due to the low level of education of most residents. Free movement in the area was not an issue because of good local contacts and a thorough understanding of the situation. NELICO played a central role in giving relevant information, because they are specialized in issues with albinism and this was a decisive factor for choosing NELICO for this study.

METHOD7 To deconstruct the discourse and practice of the awareness campaigns of NELICO, qualitative methods were deemed suitable. The ethnographical method was used to examine the NGO-working, their discourse and practices. The reasons and arguments to use this approach were multiple. First the ethnographical method gave an insider perspective of NELICO as an organization. Following the organization from the inside and interviewing members and persons related to NELICO, gave insight into their work and campaigns, which provided a nuanced point of view. Secondly the local context could be taken into account in the analysis, which could also reveal the process behind the decisions of the organization and campaigns by NELICO. Different (power) relations within NELICO were examined with this ethnography. Thirdly the social reality of Geita and NELICO could be better understood. NELICO was seen an actor with its own (created) reality. Accessibility to the organization and the campaigns could be revealed and also internal tensions could be studied. Lastly the ethnography gave the possibility to provide a study where the participation was high due to a close relation with the organization and an understanding of the context. No hypotheses were formulated before the actual fieldwork as the group (pwa) are particularly hard to reach. Furthermore, the matter of albinism has had limited local interest and matters such as female genital mutilation and the political system have received more attention. However, some topic lists were drawn out and some questions for members of NELICO and other groups were written in advance 8. Analysis of the data was done in different stages. Every day the interviews were replayed to gather relevant information and to use them in the next ones. Thirteen interviews were recorded: five of the interviews were with members of NELICO, three with pwa and two with traditional medicine men. The remaining interviews involved partners of NELICO and within the local authority. The interviews focused on the NGO, to get a better understanding of their work and their awareness campaigns. These target groups are key actors in the problem of violence against pwa and they are crucial to deconstruct the awareness campaigns. 7 8

Extra information concerning the method is added (attachment/appendix) Topic lists and interview questions in attachment

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Good connections with NELICO and local contacts provided applicable and important interviewees. Table 1 gives an overview of all persons in the dataset. Tabel 1 Overview respondents

Initial Abbas Aaliyah Babette Babak Cadman Dacey Cadence Dabria Ealasaid Fabio Gabor Fabienne Ian

Age9 37 26 28 70 42 50 37 39 39 47 40 35 47

Birthplace Musoma Mwanza Mwanza

Gender M F F

Geita Morogoro Shinyanga Musoma Geita Geita Shinyanga Mwanza Texas (USA) Bukoba

M M M F F F M M F M

Function Member NELICO: Social worker Member NELICO: Social worker Member NELICO: Child labor officer Member NELICO: program coordinator / Persons with albinism programs Member NELICO: Resource mobilization officer Medicine man / farmer-piki piki driver 10 Medicin man/woman Counselor of an area / Businesswoman Secretary of TAS / Business (cereals) Chairman of TAS / pastor / farmer Business (water) NEEMA House director Project manager of PLAN international in Geita

Finally, extra information was gathered from my own previous research in the summer of 2014. The study sample was pwa and people closely involved with the issue of albinism. The aim was not only to learn more from the people affected by albinism themselves, but also to take into account the different views of local actors and to explore the phenomenon of albinism in detail to get a better understanding of how it is perceived and experienced in this specific context. Content from interviews is being used to get more background information about the situation for pwa in the Lake Area and to get insight in Geita and the region. The first section of the results gives an overview of the current situation, with a comparison between July 2014 and February 2016, to see if the discourse around the awareness campaigns of NELICO changed over time.

ETHICAL CONSIDERATIONS & CHALLENGES To the respondents it was explained that their participation in the study was fully voluntary, and that the data collected would be kept strictly confidential and used for the research purposes only. To avoid misunderstandings, the participants were informed about the goal of the interviews, possible compensations and the research as a whole. All respondents gave their permission to use what they said in the interviews for the research. Good communication was central to achieving the

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Minimum age of 26. No issue of parental consent Taxi with a motorcycle

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goals. Members of NELICO spoke good English, so there was no translator needed. When the interviewees did not speak English, a translator was present. The translators were members of NELICO, 11and their only request was to mention NELICO in the article as reimbursement. Translators were in some interviews necessary because some respondents did not speak English. The loss of control in these interviews were compensated by a good trust in the chosen persons for this task. Guarantees of anonymity were given. Finally pwa are proven to be a difficult group to reach (Ackley, 2010; Brocco, 2015; Brocco, 2016). To reach the pwa, NELICO was necessary. It was a context of constant uncertainty, where flexibility of the researcher was crucial. However, security was always assured by the local promotor during the research. Guarantees were given to hold the interviews. The privileged position as a western researcher was already experienced in the previous study and was also taken into account in this research 12.

ANALYSIS LOCAL LANDSCAPE Geita is a city in the northwest of Tanzania, known for its mining activities by the international South-African Ashanti mining corporation (Kitula, 2006; Emel, Plisinski, & Rogan, 2014). Visually, Geita is one big road where smaller (dirt) roads lead to the rural areas of Geita. Most companies are settled close to the main road. NGOs are no exception, as they settle here because of accessibility and a potential ‘market’ for their activities. Geita is easily accessible by car from the city of Mwanza. Poverty and abuse of the less fortunate are still visibly present in the society 13. Because of this precarious situation numerous international NGOs moved into the region accompanied by local NGOs either linked by international NGOs or independent. They have mainly settled in Geita City since the beginning of the 21th century 14. The local NGOs target mostly international key topics on the international agenda for example HIV campaigns, maternity health and malaria prevention 15. NELICO started focusing on the albinism issue in 2009, however the violence on pwa has been present for a long time in Geita 16. The attacks on pwa stood out and people came to know more about the attacks since the turn of the millennium. The moment of shift towards heightened awareness of albinism by NGOs, came as a result of more attention by local and international media, which led to a theme in the upcoming

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The possible ‘selection bias’ was recognized and taken into account (during the research and the analysis) Communication about this issue was in every interview present 13 Interviews 1-13 and observations 14 Timeline of events and start organizations in attachment 15 Observations and information from the director of NELICO 16 Interviews with pwa and NELICO 12

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Tanzanian elections and also resulted in a scientific report about the issue of albinism in Tanzania (Ntetema, 2009). The media report of Vicky Ntetema in 2008 led to the attention of NGO Under The Same Sun (UTSS). UTSS was established in 2008 17 in Canada and not much later, in 2009, they opened an office in the capital of Tanzania. This gave a direct incentive for NELICO, especially for the director, to support activities of UTSS and to start addressing the violence against pwa. The attention of an international NGO was an extra ‘push factor’ for NELICO to start activities around albinism 18. NELICO now focuses mainly on this topic and in the following years other local and international organizations started to work on the issues with albinism in the region. NELICO however remains the key player over the years by maintaining a strong position in campaigns about albinism. They make a clear profile of their organization: an organization focused on children with an extended link to children with albinism and pwa in general. Because they were the first local organization in Geita specializing in albinism they obtain a lot of acknowledgement within the international donor world. They work closely with international NGOs like ‘Plan International’ and

‘Terre des Hommes Suisse’. In addition, also at local level in Tanzania and Geita itself, they get a lot legitimacy. The ‘Tanzanian Albino Society’ (TAS) has close relations with NELICO. It is an organization by and for pwa. TAS itself was founded in 1978, but it is only in recent years that they are becoming more influential at the regional and national policy level in Tanzania. In Geita, TAS remains a rather symbolic group without any real financial means to organize actions and campaigns 19. They are highly dependent of NELICO for materials, financing and logistic help. An example of this is the need for sun cream for pwa. This could be organized by TAS, but today TAS has to contact NELICO for sunscreen, provided by their donors and partners 20. The hierarchal structure of the organizations, where chairmen and directors are in control and make the important decisions is notable. The chairman of TAS has close relations with the director of NELICO, but he is still dependent on decisions made by NELICO. As a chairman he can organize events and campaigns but he, and TAS in general, lack the means to do it so they often organize meetings with the TAS members to analyze the current state of the situation and how bad it is, but real actions to improve their situation are absent. The exact number of members of TAS, as the number of pwa in the region, is uncertain, because there is no official registration 21. Therefore NGOs and government officials have the power to ‘manipulate’, whether or not profitable for pwa themselves. So having ‘knowledge’ about data is having power.

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In 2009 the office in Tanzania was settled in Dar es Salaam by founder Peter Ash Informal talks with the director 19 Interviews 9-11 and informal talks with director & finance manager NELICO 20 Interviews 9-11 21 Government officials, directors of NGOs in Geita and online sources could not provide data 18

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NELICO The current landscape around the topic of albinism awareness is quite diverse and complex, but a deep analysis of the campaigns reveals that only a couple of key players have a meaningful role. NELICO itself plays a crucial role in the theme of albinism in the region. They started as an NGO in 2004 with a focus on HIV/AIDS and orphan care, because in the region there are numerous orphans as a consequence of AIDS (Unaids, 2015; Unicef, 2015). Today, 2016, they are still hosting campaigns to raise HIV/AIDS-awareness, but they now focus mainly on issues with albinism. As mentioned above, higher media attention and reports from international groups like the United Nations, initiated the shift. The change to this topic reformed the internal structure of the organization. More people were employed by NELICO and members of the NGO specialized in specific topics such as albinism. A full time staff of 21 employees, all from Tanzania, have been installed over the years, where it started with just three individuals. As mentioned the NGO is structured hierarchically, but a certain flexibility can be noted. Members have a clear position in the NGO, but if board members feel there is a need in a certain topic, for example in albinism, they can decide to transfer the members to this theme, to use the NGO to its full capacity 22. NELICO is the organization that connects the most with other organizations. This allows them to take a central position in the landscape in relation to albinism. The initial international attention was raised before there were national actions in Tanzania and the Geita region. However, a certain evolution may be noted since 2009 as an increasing number of people gain interest in the topic of albinism, with the government as one of the most important ones. Pwa themselves see the government, in cooperation with NGOs, as the most important actor to solve the problem, but in combination with a raise in their own empowerment. Participation in campaigns becomes a resource for a certain position in the local society (Grillo, 1997; Ledwith, 2011). After some years members of NELICO enjoy a raise in status in society. Their expertise in setting up campaigns on albinism cause legitimacy and authority which has a direct impact on their own living(standards). At the individual level the members of the NGO have strong personal motives to join the organization 23. The NGO offers opportunities on different levels. The motives are internal and external. Internally they want to have some impact on the society. External motivations are translated into financial support for themselves and their families. The notion of personal motives is strongly related to the definition of development of Korten (1990), who states that development is a process in which actors in a society increase their personal and institutional capacities to mobilize resources. Due to the harsh conditions in Geita, employees of NELICO seek opportunities. NELICO offers not only the financial aspect they need in life, but also NELICO gives a certain symbolic capital. 22 23

Interviews 1-5 Interviews 1-5

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When individuals join NELICO they have to do an internship of a couple of months before the director decides if he/she may get the job. The first years most members do not enjoy much respect in society, but gradually given time, people see what members of NELICO financially can achieve and they obtain more respect. An exception is when a new member goes to a country outside of Africa. For example, if a new member visits Switzerland to follow some courses for a couple of months (related to the working of NELICO), the returning member enjoys a lot of credibility in NELICO but also in the society 24. This is strongly linked with the idea of whiteness (Ferguson, 2006; O’Neil, 2016) as being white is still associated with success and money, therefore being linked with ‘white’-associates generate respect. Speaking in English also seems to receive more respect. In Geita, the English language is commandeering more success, thereby strengthening the position of the elites, as only the existing elites have the ability to converse in English 25. While NGOs in Geita experience sometimes a feeling of desperation, they try to change this feeling both internally as externally. Internally they have to motivate the members to work on campaigns and create a feeling of ‘one team, one mission’ 26. Members of NELICO know the overall goal of the NGO, but also the specific targets sought by the individual campaigns for albinism. Members of the organization from drivers to the financial manager, know exactly what is happening in the NGO in relation to campaigns. This was a surprising finding, because for example the driver of NELICO has no direct input in the campaigns involving albinism but he knew exactly what the campaigns were about.

Government NELICO perceived an increase in incidents of killings and direct discrimination of pwa. In combination with a strong sensation that the government did not take serious measures. The relationship between NELICO and the government changed over time as the government saw that NELICO gathered expertize in albinism. NELICO organizes the awareness campaigns, but they still need permission from the government to organize the awareness actions in a public area. Therefore, the government plays an indirect role in the campaigns but at the same time they are increasingly involved in the operations. The goals and aims of the NGO came by demand and higher visibility because of the international institutions such as the United Nations (Ntetema, 2008; United Nations 2015). As most other African countries, Tanzania has a colonial legacy as well. This history of English and German colonizers, has a visual impact on the national and regional structures of the government (Saul, 1974; Max, 1991). Research revealed a strong local autonomy of government 24

Interview 3 Observations in 2014 and 2016 in the region 26 Informal talks with the director and in the interviews (1-5) this feeling was strongly observable 25

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institutions, especially some government elites who benefit from the campaigns 27. The leading party in Tanzania, Chama Cha Mapinduzi, works closely with local leaders in which the local leader can maintain his/her power 28. In this research the government are local leaders, but also regional government officials. The role of the government officials is to make and enforce the laws. In relations to albinism, they have the power to implement the laws, which are often made at national level. The role of the local leader in Geita is mainly symbolic but in the society in Geita it remains important to have the support of these kind of individuals. They can provide a piece of land for campaigns, give their ‘blessing’ or use their influence to reach many people. Bureaucracy is still the usual way to organize events and to structure the organizations and actions 29. For albinism we see that NELICO has to contact different government officials at various levels to organize actions and that they have to follow the rules of the government. Despite local and national government institutions outsourcing various duties towards pwa, the government still sees itself as the crucial actor in the scene. A small group of people, under the title of ‘elites’ in this article, undertakes various actions.

Current situation An analysis of the respondents with albinism, who should be the number one actors in the campaigns and policy matters, show that the pwa their agency is indeed limited by economic (poverty), cultural (stigma and lack of knowledge about their condition/education) and social (interpersonal power relations) constraints 30. At the individual level, people experience difficulties in daily life. Both the young and the elderly face problems in the public and private sphere. In the public domain children and teenagers have problems with attending school and the schools lack adequate materials to their lessons for pwa. When pwa reach the age where they can go to work, they have trouble gaining employment because people have the idea, or the belief, that pwa do not have the same abilities. However, pwa do find strategies to cope with these constraints. Previously conducted research showed that coping within groups is more successful than trying to handle a situation individually. Coping within a group seemed to be fruitful, however, segregation and marginalization of pwa is present at different levels in the society. The outcome of this previous research should suggest that inclusion of pwa in the NGO should not only improve the understanding of people close to pwa, but also increase the wellbeing of pwa. However, between 2014 and 2016 there was no increase in the wellbeing of pwa found by this research. To provide a more complete account of the situation, the research took different 27

Observations in Geita and interview 8 Interview 8 29 Observations in NELICO, others NGOs and local government institutions 30 Interviews in 2014 (only pwa) and observations in 2016 28

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perspectives into account. Not only the government and NELICO were examined, but traditional doctors and pwa were interviewed as well. Furthermore, partner organizations are in the study as the knowledge NELICO has about albinism came primarily from international donors and partners, especially from UTSS. Other actors in the region are pwa who form a group under the TAS. This seems a crucial group in order to tackle the issues with albinism, because it could improve their empowerment. Their role, however, is rather small as the rest of article will show.

THE DISCOURSE OF NELICO An overview of the activities of NELICO can provide an insight in the working on albinism in Geita. Here we can see that there is not a consistent approach due the lack of sustainable funds and interest of possible partners. The first actions were in 2009, but in the following years campaigns came and went, with a clear rise just before and after the elections of 2015. In the approach of NELICO, the only effective local NGO in Geita 31 concerning albinism, is the buzzword of community important to ‘sell’ their story. The focus on discrimination and violence on pwa is important as it brings the message to (international) partners, in combination with a discourse of evolution in the perception of the community. A focus on the actors, pwa, is rather neglected. On the one hand a positive approximation is replaced by an exclusive discourse of violence happening against pwa. This to raise enough funds. On the other hand they use a positive way to handle with the campaigns: according to the members of NELICO, NELICO involves the community. Besides the internal cohesion, NELICO spreads one message into the local environment and to the international donors and partners, to highlight what they stand for and what their goals are. The idea that the problem could be over in a couple of years, suited the current idea of development aid (Cornwall, 2007; Crewe & Harrison, 1998). There was a demand on both sides. The international development sector and the pwa. The problem solving approach suited well. In the initial years the government was not very involved, but over time, as the attention systematically grew, they became more concerned with the situation and their involvement grew. Despite the fact that the members of NELICO feel sometimes that they have a low impact on harsh situations, they have to send a positive message to possible partners, donors and people interested in the NGO 32. This approach is applicable for all their campaigns and particularly for campaigns on albinism, because this is a recent direction of the NGO. The reason for this is because the director perceived that the attacks became more violent, but also because more attention was raised for the issues with albinism in Tanzania. NELICO examines if it is interesting to be involved. If there is a lot of attention from donors and partners and 31

Other NGOs like UTSS and Standing Voice are also in Geita, but they have are not exclusive in this region. Also other community organizations are present, but they are not active 32 Informal talks with members of NELICO

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if they can strengthen their position as an NGO, then they try to get involved 33. In the specific theme of awareness NELICO handles with a precise discourse. The campaigns try to explain what albinism is and what it is not. NELICO tries to let the false beliefs around albinism disappear. This happens to point out the biological aspects of albinism and the fact that pwa are also Tanzanians and members of the community. In their discourse, NELICO sends a positive message to the society, in which they announce that albinism is not something supernatural 34. The exact explanation, however, is not always consequently given in the campaigns. Through the NGO discourse, an ‘easy’ story of ‘bad and good guys’ is being used, where the government are the good party and the traditional doctors are the cause for the attacks. This story strengthens the idea that the government should take a central role and NGOs can fulfill functions such as spreading awareness. As an NGO they send a double message to possible stakeholders in their organization. Firstly, they address that there is a problem that should be solved. Secondly, they link these problems with the approach of NELICO and how they are solvable when there are continuing actions and programs. One can notice that NELICO handles with a double discourse. On the one hand to the (international) donors and partners that they let pwa participate and other community members to solve the issues with albinism. On the other hand, they construct the discourse to the local community and the pwa that NELICO is the one that can solve the problems. As such the donors expect that NELICO involves the community in their campaigns. The concept of ‘community participation’ stands central. Donors wish that the different layers of the society in Geita participate in the campaigns and that different groups are being reached with the awareness campaign, especially pwa themselves 35. NELICO tries to follow this discourse by holding different actions. The main awareness actions are being held in public places to provide information about attacks or to tell what the problem is with traditional doctors. In their terminology they are described as witchdoctors 36. They attend the market with some members of NELICO, sometimes with the chairman of TAS, taking dancers with them to attract the attention of the public. When they have an audience they let someone speak about albinism from the region. Finally, they conclude that pwa are closely involved and that they participate in their campaigns 37. In this way they try to meet the expectations of donors and partner organizations.

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Informal talks with director and interview 5 Interviews 1-5, informal talks with director and observation of campaigns 35 Interviews 1-5, 12, 13 and informal talks with director NELICO 36 Also media uses this term to bring a story that is easy to understand in Tanzania 37 Interview 1-5 and informal talks director 34

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COMMUNITY PARTICIPATION IN PRACTICE From the interviews and the observations by the ethnography in Geita City one can provide a good image of the organizations and people who are in the community and participate in the awareness programs. The official organizational discourse and the real implementation of actions often differ from each other. ‘The community’ seems to be a concept that is still a buzzword in the context of awareness campaigns in Geita. In many other development settings community is a concept which has lost relevance or which has been outdated (Cornwall, 2007). For the awareness campaigns one can see that community still plays an important role to connect with partners, to attract donors and to send a clear message to the pwa. This message is mainly that NELICO can reinforce them, the pwa, in their struggle by the awareness campaigns. The approach to tackle the problem is in that way quite passive, because pwa themselves are not encouraged to take action. An explanation for this is twofold. Firstly, pwa are a minority group and it is very difficult for them to organize themselves in an effective way in Geita, where daily life is still harsh (Kitula, 2013). Secondly NELICO tries to maintain their position in relation to albinism in society. Outsourcing duties is risky for them, especially in maintaining funds 38. So one can already question the idea of ‘community participation’. In the campaigns an in- and outgroup is being found. The in-group consists of all members of NELICO, who are officially registered, the chairman of TAS Geita and some local leaders and government officials. This limited group shows already that the outgroup is larger than the ingroup. No pwa, traditional doctors, miners or fishermen are being involved in the campaigns, despite the fact they are members of the community and more importantly they are the key figures to solve the problem in the official discourse of NELICO. When NELICO organizes a campaign in a public area, the market is the most chosen place, they address all the people who are able to go to the market or going to the city. Reports show that most incidents are happening in the rural areas of Geita. The people involved in the campaigns are not a representation of the community and the target group is not fully reached. Although the question “who determines the partakers of the programs”, seems an easy question to answer, it nevertheless had a surprisingly different outcome. Expectations were that the programs were set up between the NGO and a group of pwa. Furthermore the prediction was that traditional doctors were involved because they are being accused of spreading false beliefs. After the first interviews with the members of NELICO it was clear that pwa are not involved in the campaigns, nor the traditional doctors. Pwa can go to NELICO, mainly for advice, but in their eyes real empowerment is not being given by NELICO, as they do not support pwa financially. Pwa expect the

38

Talks with director of NELICO and observations in NELICO and partner organizations

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organization to help and improve their daily situation with the support of financial aid. NELICO tries to support pwa with the help of general awareness campaigns, but pwa do not experience direct benefits, although they do appreciate that NELICO stands up for them. The money NELICO owns is being used to grow as an NGO in the expertise of albinism and to set up new campaigns. They support TAS financially in some level, but because of this help it seems that TAS remains dependably of NELICO and TAS do not start own actions to generate money. Surprisingly pwa are not really involved in the campaigns. Only their chairman takes part in some campaigns but he has merely a supporting role. NELICO wants to keep control over the programs and members of TAS are not actively supported to take over the campaigns. Pwa do not help directly with the programs, neither do they have an input in the campaigns. This is not a conscious strategy of NELICO, but it has grown organically this way 39 and it is very difficult to change this. Empowerment of individuals is something that NELICO tries to direct to the government and partners, in combination with advocacy actions for the rights of pwa. Pwa themselves experience the campaigns as positive, but say that their own situation does not improve that much in the short term. Discrimination and a bad access to the labor market are still common for them 40. Traditional doctors are not being involved because the international discourse about them is very negative. NELICO takes that position so they can still receive support from partners and donors who are against the practices of those doctors. Also pwa have a very negative attitude against the traditional doctors because of the incidents in the (recent) past. For this reason, NELICO chooses to neglect the traditional doctors in the campaigns. The question ‘who determines who is in the programs?’, is tricky. We could argue NELICO chooses, but in the end the power is in the hands of international donors who have an idea over the situation and want a simple solution for the problem. Some elites determine how the actions are taking place and who is involved. These are mainly internal elites in NELICO. Crucial positions in the NGO like financial manager and director determine how the campaigns are being fulfilled. Recently, they added the function of ‘resource manager’, which has a big influence on the finances and the choice of the campaigns. ‘The community’ is a concept being used by these elites that state that they speak for the whole community, but in fact they operate to maintain their own position. Furthermore external elites, outside the NGO, are present. Specific to the campaigns are the local authorities and government officials closely involved. Government institutions, for example, are mainly in charge of the community, but with pwa we see that NELICO and partners play a central role. The elites around the theme of albinism in Geita are in the first place NELICO and the government.

39 40

Data from documents (start till now), informal interviews with the director and members of NELICO Interviews 9-11 and interviews in 2014

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THE POWER OF/OVER THE COMMUNITY: OPPORTUNITIES So the discourse in the awareness campaigns of NELICO is a promotion of community participation for pwa. However, in their daily practices they do not evoke pwa and even more striking is the absence of pwa in the awareness campaigns for albinism 41. An explanation for this, in Geita, is the strong hierarchy in the structures of NGOs 42. Elites, for example directors of NGOs and local authorities, want to set up programs, but with these programs they want to enforce their position in society. Because they specialize in albinism they gathered expertise over the last few years in albinism and raising awareness, which led to more authority and legitimacy. International donors recognize NELICO and openly support them. Locally, this support leads to extra legitimacy from local authorities. By keeping control of the campaigns and by getting international support they enjoy support at local level 43. Another explanation for the exclusion of pwa in the campaigns, is the educational level of pwa. Ordinarily, pwa are still not as well educated as other Tanzanians. This a combination of bad vision, unsuitable material to overcome these problems and stigmatization, often leading to negative school results and dropouts. For this reason, the relevance of this study lays in a broader framing of contemporary struggles of people with disabilities in Tanzania. In the context of engaged research, the article aims to have societal relevance and impact. From this study not only negative aspects of NGOs came up. It was a conclusion that empowerment seems to play a role in the campaigns, but the power does not grow that much for pwa, but more for the organization and people who are involved in the campaigns. The research discovered that the participants of the campaigns are mostly not pwa. This is not on purpose, but more how todays practices are going. NELICO is still adapting their campaigns and is willing to change in their possibilities. They are dependent of donors and NELICO gets both implicit and explicit orders for their campaigns. Explicit orders consist of instructions on how they should address a problem, for example for the awareness campaigns they get materials to explain the biological aspects of albinism. Implicit orders are more visible at NGO congresses, donor meetings and director meetings. A Buzzword like community participation is still important in the issue of albinism. Power is crucial in relationships and also in the NGO world power plays a vital role (Fisher, 1997; Hilhorst, 2003). NELICO tries to maintain their position in the (inter)national NGO scene. To stay in control in the matter of albinism it seems to them, rather in an unintended way, important to fix all the issues of the awareness campaigns. Although NELICO states that pwa should be involved in community matter, they do not involve pwa themselves. Legitimacy and authority play an important role for NELICO in their practices. After their specialization in albinism they enjoy legitimacy of the 41

Observations, interviews 1-5 ; 9-11 Observations, interviews 1-5 ; 12-13, informal interviews with the direction 43 Observations, interviews 1-5 ;8-13 42

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local government. In this specific context support of the local government is crucial to survive as an NGO, because of the regulation and bureaucracy, which seems to be more and more important. Beside the legal aspect, NELICO also has authority. People in the community can go to NELICO when they have questions about albinism. Knowledge is power. TAS also goes to NELICO when they need social and financial support. This strengthens the position of NELICO. They get more respect from pwa, but also from international actors in the struggle against the attacks on pwa and the ongoing discrimination. A specific discourse is created to satisfy the international community. Exclusion of pwa is in that way a conscious and unconscious process. They want to maintain their position by keeping control over their campaigns, but at the same time they also want to help pwa get a better position in the society. So profiling of NELICO is not only an economic matter, but even more a symbolic matter. The outsiders need to know in a simple way, what they do, especially for donations. A discourse of good versus bad guys (the government and NGOs versus witchdoctors) has therefore been used. For donors this is a key argument. There are people who are guilty and the problem seems to be easy to solve. When NGOs in Tanzania succeeded to ban the license for witchdoctors by the government this was perceived very positive by media and donors. Strengthening of government and NGOs and removal of these witchdoctors leads to the solution in this discourse. Finally, the discourse also has an impact on how people see the problem and how it should be addressed and tackled. People from outside the country expect that pwa are involved in the campaigns because they assume NELICO can achieve good awareness campaigns. In the NGO itself members expect that the government, locally and nationally, with the support of NGOs can address the issues with albinism. Therefore, community participation is a concept which is still important in the NGO world to attract donors and international partners and the idea also lives in the general opinion of people who donate. Bottom-up approaches are still being seen as favorable by donors, while NELICO, and other NGOs, have the feeling they have to keep control and can achieve the best results by using a top-down approach in their organization and campaigns.

DISCUSSION ‘We rise by lifting others’ is a known quote from Robert G. Ingersoll and illustrates one of the key points of this article. People all over the world are helping others because they cannot stand seeing people living in misery, but who is being lifted? Who is the other and are they really benefiting from those actions (Crewe & Harrison, 1998)? These questions provided a guidance for the central arguments of this article. The first question was answered in the article by giving an insight in the awareness campaigns by NELICO for albinism awareness in Geita. Pwa are being lifted by the 27

campaigns. However, this research made a deconstruction of the discourse and practices of (community) participation and led to the conclusion that the knowledge still remains in the NGO and that local elites like NGO directors, TAS leaders and local government benefit by the campaigns by being in control of the campaigns, enjoy legitimacy and enforce their position in the society. So the positive impact of the awareness campaigns of NELICO is limited to listed elites. So NELICO benefits mainly from their campaigns by taking a clear position in the matter of albinism in Tanzania. Therefore, the first goal of the research was to deconstruct the discourse around awareness campaigns by NELICO. Other studies showed that there are often other actors in charge, in comparison with what seems the most logical in the general opinion (Crewe & Harrison, 1998; Giri & van Ufford, 2003). Secondly, the article tried to go beyond the descriptive character of qualitative research. It gives an explanation for the reason why NELICO handles this discourse. NELICO has to send one clear message to start new campaigns and get fundraising. They have to take into account different actors who have clear influence on their practices. Local government officials, partner organization and international donors are the most influential ones. This needs an inventive and coherent approach. A hierarchical structure is being used to keep control over the topic, top-down, and spreading of awareness in the area. This in combination with a performance based approach to be seen as a ‘good NGO’. Performance in the NGO-world has seen an up rise since the end of the Cold War (Fowler, 1996). Thirdly, the research wanted to engage with the NGO, by closely following all the activities related to albinism and the daily life of the members of the NGO, to give insights in their strategy and activities in favor of pwa. One can notice that NELICO has a crucial role in relation to albinism awareness in the Geita region. Setting up public meetings to give lessons about albinism and organizing protest and awareness marches are only two examples. The dependency of external funding makes their position uncertain, which leads to an approach where awareness for the violence against pwa is being raised but real empowerment and engaging with pwa is not being done. In the future, NELICO might involve more pwa do show that their discourse of participation of pwa in the society in being done in practice. Showing the agency of pwa to the (inter)national and regional community could led to a more comprehensive approach. It would also increase the representability of NELICO as an NGO, to the society which eventually could lead to more opportunities and a better life for pwa.

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Unaids. (2015). Unaidsorg. Retrieved 31 July, 2016, from http://www.unaids.org/en/regionscountries/countries/unitedrepublicoftanzania Unicef. (2015). Uniceforg. Retrieved 31 July, 2016, from http://www.data.unicef.org/resources/thestate-of-the-world-s-children-report-2015-statistical-tables.html United Nations. (2015). Mutilation, killing of Tanzanian boy with albinism strongly condemned by UN rights chief. from http://www.un.org/apps/news/story.asp?NewsID=50128#.VUN3uyHtmkp United Nations (2016). UN News Service Section. Retrieved 16 June, 2016, from http://www.un.org/apps/news/story.asp?NewsID=53514

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APPENDIX (CD-ROM) Appendix: CD-ROM

CONTENT ARTICLE SUMMARY IN DUTCH ACKNOWLEDGMENT EXTRA INFORMATION ABOUT INTERVIEWS: METHOD INTERVIEWS: CODED 2ND ROUND (IN REMARKS) Interview 1: 08.02.2016 Geita Interview 2: 08.02.2016 Geita Interview 3: 08.02.2016 Geita Interview 4: 08.02.2016 Geita Interview 5: 08.02.2016 Geita Interview 6: 09.02.2016 Geita Interview 7 : 09.02.2016 Geita Interview 8: 11.02.2016 Geita Interview 9: 15.02.2016 Geita Interview 10: 15.02.2016 Geita Interview 11: 16.02.2016 Geita Interview 12: 17.02.2016 Geita Interview 13: 19.02.2016 Geita

INTERVIEWS: NVIVO METHOD TOPICLIST AND INTERVIEWQUESTIONS Topiclist 1 Topiclist 2 in Tanzania 33

Interviewquestions government Interviewquestions members NELICO Interviewquestions partners NELICO Interviewquestions pwa Interviewquestions traditional doctors

GARANTEES BEFORE FIELDRESEARCH PASSAGES FROM DIARY / DE NOMADEN ANALYSIS First findings: Tanzania & Belgium Staff NELICO Central codes & concepts Timeline / events Word cloud Conditional relationmatrix Concept map: Mapping relations Concept map: Mapping structure concepts Extra statistics / data

LOCATION RESPONDENTS OVERVIEW PICTURES FOR ANALYSIS VLIR GRANT

34

Albinism, development and NGO-approach - Universiteit Gent

Local NGOs have been starting to specialize in ..... bottom-up discourse NELICO states it does and the reality of their top-down approach to ..... Business (water) ..... to ban the license for witchdoctors by the government this was perceived very.

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