Conducting fieldwork with refugees with disabilities
Finding oneself in discomforting situations is part of every fieldwork experience. Medical anthropologists, in particular, are often confronted with precarious lives and social inequalities that contrast with their privileged position. Given the location of my doctoral research, in a refugee settlement in Uganda among disabled people who have fled from eastern Congo, I anticipated, as a well-off outsider, that I would encounter some tough moral situations when engaging with people living in simple dwellings, owning few clothes, and experiencing physical and emotional pain. The notion that situations of discomfort – be they frustrating, troubling, or shocking – can be especially productive for new insights is nothing new (see, for example, Agar 2006; Malefakis 2015). Yet, in the midst of personal doubts of one’s position as a researcher and the methodological challenges involved, it is not always easy to gain knowledge in these moments. This essay talks about the difficulties of recognizing such unpleasant situations as ethnographic ‘rich points’ (Agar 1996, 31) and making sense of them.
One of these situations occurred during a busy market day in Kyangwali. As I made my way through the wooden stalls and past the plastic sheets on the ground that displayed everything from potatoes and dried fish to electronics and clothes, a stranger suddenly approached me. The tall man eagerly unbuttoned his shirt, pointed to a scar on his shoulder and claimed, ‘I’m also a person with a disability!’ Since many people knew about my research at that time, this situation was far from exceptional. I certainly found interest in learning how people negotiated their bodily status in order to identify with a potentially productive humanitarian assistance category. Nevertheless, I sometimes also felt annoyed when, for example, a young man showed me a slightly malformed finger or an elderly woman put her hands on her hips to complain about backache. I assumed that these individuals only approached me with their claims of being disabled in the hope that I could be of help in some way or another. Similarly, when I strolled over the fields where sacks of beans and maize were unloaded from lorries, people lining up to collect their monthly food rations turned towards me and complained, with their hands on their bellies, that ‘the food is not enough’.
My persistent incomprehension can be understood as what Michael Agar has called ‘rich points’ – the moments in research the ethnographer repeatedly does not understand …
I was well aware that ‘contingency colours interactions’ (Whyte and Siu 2015, 27) and that people’s hopes for potentially promising connections also shaped my fieldwork experience. The perception of wazungu (Kiswahili for ‘white people’) in Kyangwali is associated with decision-power and money. White people often occupy the highest positions within the UNHCR or visit the settlement as part of donor delegations. Assuming that people would likely perceive me as connected to organizations and services, I was careful to not be associated with the aid agencies. Hence, I moved around with a bicycle or by foot, visited people outside office hours, and took part in activities like preparing cassava leaves for dinner. Despite these strategies, food-related and other complaints were continually recurring topics, even among good acquaintances who certainly knew that I was not an aid worker or journalist.
My discomfort arising from this situation was manifold. Experiencing a moral dilemma when being confronted with people lacking food, medicine, and transport money, I doubted whether and when to provide assistance, given the dual risk of enforcing asymmetrical relations and undermining the validity of my research results. This also left me wondering whether the food aid and other assistance provided were indeed not enough, and whether I had succeeded in retrieving the ‘real’ information. I spent hours wracking my brain over what kind of additional insight I would gain by trying to survive on the food rations myself, or what I might learn by moving from the Catholic guesthouse where I was staying to the home of a disabled woman in order to observe how often she cooked and where she received food from. My constant scrutiny of people’s claims and complaints made me question my ability to empathise with disabled people and their concerns. My irritation continued as I was confronted with demands for expensive made-to-measure mobility appliances and medical referrals for surgery to one of the best hospitals in the country, especially when I compared the existing assistance to what people with disabilities can expect in other rural areas in sub-Saharan Africa. I similarly felt puzzled when, after receiving the usual gifts of soap, sugar, and maize meal for her newborn child, one mother continued asking me for additional things like a hat or milk powder for the baby.
My persistent incomprehension can be understood as what Michael Agar (1996, 31) has called ‘rich points’ – the moments in research the ethnographer repeatedly does not understand – suggesting a mismatch of one’s own, usually implicit, assumptions about how the world works and what actually happens. Recognizing the potential significance of claims and complaints for my research, I reflected on why I felt particularly offended when I was asked for something I deemed inappropriate, or why I was more at ease with giving something small when the receiver for example mended my broken sandal in turn. I became increasingly aware of my ethnocentric reasoning and patronizing stance. In many respects, my discomfort resulted from my unquestioned assumptions about what is appropriate to ask for, and my own expectations of how gratitude or even equality should be expressed.
After I read literature on patron–client relations in African contexts and learnt more about hierarchical but interdependent relations of mutual exchange and obligations (see for example Whyte 2014; Scherz 2014; Ferguson 2015), I began to consider disabled people’s claims and complaints as signs of connectedness. These theoretical frameworks influenced my way of understanding people’s requests as not solely a consequence of my skin colour or position as a researcher. I began to conceptualize them as crucial claims of belonging towards people who were considered potential patrons or providers. More often than before, I detected instances where not only aid workers but also refugees with more money were similarly constantly asked for and provided support. I remember when the penny had dropped: I overheard one of my interlocutors asking a disabled friend for a little money to fix his tricycle. Although he had mentioned before that he had trouble with it, he did not ask me directly for any contribution. While some weeks earlier, I would have understood this situation of not being asked for help as having built rapport, I realized at this moment that it rather reflected my interlocutor’s interpretation of my role as a researcher to whom asking for a financial contribution would not be appropriate in this context.
This turning point did certainly not solve the larger moral concerns about reciprocity and research integrity. However, when I complied with people’s requests, I felt less remorse about participating in the unavoidable, existing social hierarchies I initially attempted to dismantle. Also, learning that it was more appropriate than I expected to reject certain requests (see also Durham 1995), I felt more comfortable turning down some of them. Preoccupied as I was with questions about my personal aptitude as an ethnographer immersed in the field, I nearly overlooked an essential characteristic of the reality of people’s lives. Instead of being an obstacle to overcome, the way people approached me was what Whyte and Siu (2015, 28) have characterized as ‘watchfulness for positive possibility’ among people being constantly on the lookout for opportunities. When disabled people were forcibly displaced, not only did they experience ruptures in their social networks but their states of interdependence and the possibilities for claim making fundamentally changed as well. In this particular situation, representatives of the aid agencies and other resourceful people are important potential patrons and providers. Disabled people recognize and cultivate these hierarchical relations; their claims and complaints are not only a sign but also a means to connectedness and belonging.
About the author
Maria-Theres Schuler is studying towards her PhD in social anthropology at the University of Zurich. Her dissertation explores disability among refugees and focuses on people’s engagement with the aid system in a refugee settlement in Uganda. From 2014 to 2017 she was a PhD candidate in the Disability and Technology in Uganda from Local and Global Perspectives project, funded by the Swiss National Science Foundation. She is currently a visiting PhD fellow at the Department of Anthropology at the University of Copenhagen.
Agar, Michael H. 1996. The Professional Stranger: An Informal Introduction to Ethnography. 2nd ed. San Diego, CA: Academic Press.
Agar, Michael H. 2006. ‘An Ethnography by Any Other Name ...’. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research 7 (4): Art 26. https://doi.org/10.17169/fqs-7.4.177.
Durham, Deborah. 1995. ‘Soliciting Gifts and Negotiating Agency: The Spirit of Asking in Botswana’. The Journal of the Royal Anthropological Institute 1 (1): 111–28. https://doi.org/10.2307/3034231.
Ferguson, James. 2015. Give a Man a Fish: Reflections on the New Politics of Distribution. Durham, NC: Duke University Press.
Malefakis, Alexis. 2015. ‘Rewarding Frictions: Fieldwork and Street Vending in Dar es Salaam, Tanzania’. Zeitschrift Für Ethnologie 140 (1): 177–89.
Scherz, China. 2014. Having People, Having Heart: Charity, Sustainable Development, and Problems of Dependence in Central Uganda. Chicago: University of Chicago Press.
Whyte, Susan Reynolds, ed. 2014. Second Chances: Surviving AIDS in Uganda. Durham, NC: Duke University Press.
Whyte, Susan Reynolds, and Godfrey Etyang Siu. 2015. ‘Contingency: Interpersonal and Historical Dependencies in HIV Care’. In Ethnographies of Uncertainty in Africa, edited by Elizabeth Cooper and David Pratten, 19–35. London: Palgrave Macmillan.