The winner of the Public Anthropologist Award 2024 is Maria-Theres Schuler for her book Disability and Aid. An Ethnography of Logics and Practices of Distribution in a Ugandan Refugee Camp (Brill, 2023). Maria-Theres Schuler is a social anthropologist, journalist, and filmmaker with expertise in global inequality, corporate responsibility and social movements. Disability and Aid is an important book written with a commendable ethnographic sensibility. Of potential interest to experts and students of humanitarian, development and disability studies, as well as anthropology and African studies, the book provides a nuanced investigation of the dynamics of aid to disabled people in a Ugandan refugee camp.
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Antonio: Can you tell us something about your journey as an anthropologist within and outside of academia?
Maria-Theres: I still remember the very first lecture I attended as an anthropology student. My professor said at the time: “No matter what you do with it, anthropology will teach you something important for life.” To this day, I find it immensely valuable in everyday life how much this field of study has taught me to question my own values and world views. Very important moments in this process of understanding were my fieldwork experiences. During my studies, I was part of an exchange program with Ugandan students in which we explored the interplay between disability and technology, and the regular exchange in this intercultural learning setting was enormously valuable. The exchange program grew into a long-term research collaboration between Makerere University in Kampala and the University of Zurich, and I was able to learn from the intensive collaboration with stakeholders such as disability organizations as well as from the exchange with the Ugandan researchers during my PhD on refugees with disabilities, on which the book Disability and Aid is based.
While writing my dissertation, I discovered my love for narrating stories and so, after my PhD, I quickly found my way to journalism: this allowed me to combine what I was passionate about – asking questions, researching and discovering in detail – with writing engaging stories for a wider audience. In order to allow me to maintain some level of autonomy that I was used to as an academic, I joined a self-organized journalistic collective in Zurich. In our online magazine, we write from a leftist perspective on topics such as climate, inequality, feminism, social welfare, migration and tax policy. In this work, I continue to apply anthropological perspectives, although it was initially a big challenge for me to deal with topics in a shorter time and not spend a whole five years on them! Somewhat by coincidence I came across the medium of film: when I was in Goma in the Democratic Republic of Congo in March 2020 for a journalistic project, Covid-19 was spreading drastically, and horrific scenarios were expected for the African continent. Together with a friend who had already made films, we began to chronicle what we experienced on an everyday basis. The resulting documentary “Corona in Congo. A Diary of Uncertainties”, tries to show how the global Corona crisis has even reinforced existing inequalities. So meanwhile I am working more and more outside of academia, yet still with a strong relationship to science. For example, I recently started teaching as a guest lecturer in a CAS in Science Journalism.
Antonio: What’s the story of Disability and Aid? What motivated you to write this book and what hopes and goals did you have for it?
The story of Disability and Aid is, on the one hand, a rather familiar one: in the context of aid, different perspectives collide and good intentions often have unintended consequences. In the Ugandan refugee camp where I did my research, this was for example the case for an aid program focused specifically on access to water for refugees with disabilities. The project built boreholes that were accessible to a person in a wheelchair, for example, yet the people concerned did not start using them – because fetching water was usually the duty of children, and my research participants had no problems finding this help. Moreover, it was an important aspect of personhood to be able to count on this help. The aid project, however, assumed that the most desirable thing was for people to be autonomous. Their help was therefore more focused on the individual than on what was necessary or even desirable in this context.
On the other hand, the story of Disability and Aid is perhaps a little surprising. This concerns an overall shift from charity or emergency aid to sustainable development. That was the case for Uganda’s refugee policy, which pursues a self-reliance strategy by providing refugees with land to cultivate in order to become as independent as possible from aid. With regard to refugees with disabilities, this shift has been particularly relevant since the UN Convention on the Rights of Persons with Disabilities found its way into humanitarian aid. Refugees with disabilities were viewed less and less as helpless, vulnerable victims, but as actors with abilities who make important contributions. Participation, independence, and empowerment were important aspects of this rights-based approach, which seemed promising – not least because charity and dependency run counter to any goal of transformative development aid.
However, I found that this approach was neither very helpful nor very relevant in disabled people’s everyday lives in the refugee camp. My interlocutors did usually not use the language of rights when claiming help and support, but they understood their entitlement based on comparisons with aid given to other people, at other times or in other places. Such concrete everyday concerns and personal experiences were more readily available and meaningful for them than abstract human rights. Maybe more importantly, the aid delivered through this rights based approach – which preferred skills trainings and sensitization workshops over material and financial hand-outs – did not really help disabled refugees to build social relations, realize projects to make a living and invest sustainably in their futures – and thus did not support them in their pursuit of attaining personhood, which meant above all taking care of one’s children and family. Furthermore, I observed how my interlocutors experienced this shift towards a rights-based approach: in order to promote their inclusion, refugees with disabilities were increasingly asked to express their opinions on what would help them most and thus have a say in the services provided. What they repeatedly asked for were higher food rations, medication, support for their children’s education – preferably in the form of money so that they could decide on spending themselves. However, most of these demands could not be met, either because they were not in line with the criteria of the donors or with the project budgets. What’s more, from the perspective of my interlocutors, they fulfilled what was expected from them: they constantly provided the necessary information for the aid agencies’ reports and working procedures, allowed themselves to be photographed and filmed for their promotional material or played in a drama group that fought negative attitudes around disability when donor delegations visited – all things that helped the aid agencies acquire resources. This experience, whereby people with disabilities were recognized within the framework of universal rights, but in the end hardly benefitted in a manner that would have made them more equal, is what I call “disappointed recognition”.
I felt it was important to highlight these issues, especially now that disability is so high on the humanitarian agenda. By describing the different logics and practices of distribution at play in Kyangwali – one rather based on equality, wage labor or social welfare, the other one on hierarchy, social relationships and exchange – I also hope to contribute to a better understanding of the mutual mistrust so prevalent in this aid setting. Refugees felt the aid agencies were “eating their money” as they did not receive what they expected, while aid workers suspected the refugees of lying in order to receive more support. What the aid agencies perceived as excessive demands and unjustified complaints resulting from the “dependency syndrome” – the view that people remain dependent and do nothing for themselves when they receive help – could, however, be understood as rightful claims for resources and more equality. The book also shows how important it is for service providers to consider very different forms of dependency and to recognize how they are intertwined. Then one quickly can see which kind of aid strengthens other forms of important connectedness and which even reinforces problematic dependencies. Above all, direct aid enabled refugees with disabilities to invest in important and desired relationships of interdependence – and this was enormously important for them, as many had lost important relationships through war and migration.
Antonio: Thinking of your ethnographic fieldwork, what were the most rewarding aspects of it, and which ones the most challenging?
One of the rewarding aspects of my fieldwork was certainly when I felt that my interlocutors appreciated the relatively longer engagement over more than a year and not just a few days or weeks like many other researchers or visitors from abroad. However, this engagement was also a great challenge, especially in terms of what I hoped to achieve. I was aware from the start that refugees with disabilities saw me as a potential helper – be it to get a mobility appliance or to receive resettlement to a third country like the U.S. Therefore, I tried to distance my type of research as much as possible from the work of the aid organizations, for example by cycling or walking around the camp instead of driving a car like the aid workers, or by taking a lot of time to visit people outside office hours, helping them prepare cassava leaves for dinner or accompanying them to church. What unfolded spontaneously during such visits, often provided a different picture than what people were telling me initially in interviews, as I was for example introduced to relatives that I had not known about. Still, the closer my relationship grew with my interlocutors, the less I could escape the role of a potential helper, as I somehow intended. The claims for support towards me did not decrease, and this left me wondering as to whether I really had built rapport or if people were talking down the help they received.
So, I was often unsure how to react, when disabled people asked for things such as a small contribution for transport or to buy medicine, as I feared both enforcing the already asymmetrical relations and undermining the validity of my research findings. But then I took a closer look at these often uncomfortable experiences, and I tried to understand why I felt more at ease giving someone something without being asked, or when I felt it was reciprocated, for example when a recipient mended my broken sandal in return for helping out with money. Through these reflections I became increasingly aware that in many respects, my discomfort resulted from my unquestioned assumptions about what it is appropriate to ask for in which situations, or from my own expectations of how gratitude should be expressed or what equality meant. It was especially when I read James Ferguson’s book Give a Man a Fish, in which he demonstrates how people seek hierarchical connections to others and that this kind of dependency can also be productive and desirable, that I understood the importance of people’s claims for my research. These insights certainly did not resolve my concerns about reciprocity and research integrity. Yet they allowed me to understand the claims as a kind of sociality that was very important in this context.
Antonio: What are your plans for the future?
Maria-Theres: I intend to continue working at the interface between the social sciences and the public, and I can currently reconcile this very well with the kind of journalism I pursue: an ethnographically-oriented journalism that takes anthropological questions into account. In journalism, of course, there is a need to simplify very complex stories to a certain extent in order to reach a larger audience. Nevertheless, I always try to stay true to the very important nuances of how things work, which I think is particularly important in today’s reporting, which sometimes tends to oversimplify complex issues. I’m currently in the process of furthering my education in journalism and familiarizing myself with investigative journalism, for example by making inquiries to state institutions via the Freedom of Information Act. It’s often tedious work, but it gives you access to such important and exciting information, and there are so many stories lurking that should be told.
From an anthropological perspective, I am especially curious about human rights discourses and practices in connection with mining. There are so many initiatives to prevent human rights violations in this sector, which is of course very important. But what exactly do they mean on the ground? And are they enough to really bring about the necessary changes? During my journalistic work on mining, I came across similar mechanisms to those I experienced in the refugee camp, such as how communities are consulted when an industrial mining project is planned. There is a lot being done to ensure that human rights standards are met, and that, for example, schools and wells are being built and skills training is being offered to the communities. Yet, claims on the rightful share by these people seem to have no place in the current discourse and practice on human rights around mining.