1 Whose Event? An Unequal Encounter
One day in mid-April 2015, the Kyangwali refugee settlement hosted a special event. In the grounds of a primary school, people arrived one by one, some slowly while leaning heavily on crutches, others limping, supported by wooden or metal sticks. Camille1 extended her left arm to greet me before she sat down on one of the green and white plastic chairs that were arranged under the festively decorated tents. She had lost her right arm in an arson attack in the Democratic Republic of Congo. Mugenzi stood on the seat of his tricycle2 with both his amputated legs to gain a better view over the grounds where the event would take place.
The occasion was to celebrate the completion of a one-year aid project that aimed to improve access to water and sanitation for people with disabilities. The project also educated them in matters of hygiene, and promoted their participation, inclusion and empowerment more generally. A huge banner bearing Aid Global’s3 logo, the international non-governmental organization (NGO) that had carried out the aid project, was prominently hung up along the wall of one of the school buildings. Along with the disabled people,4 a large number of aid workers from various NGOs operating in Kyangwali waited in chairs beneath the tents that protected them from the scorching sun. However, when the black Mercedes Benzes and the beige Land Rovers arrived, they had to make room for the invitees from the Ugandan government and international aid agencies, accompanied by journalists and cameramen, to be
The event’s format and procedure – the speeches, the guests, the waiting and the cameras – signified that the project had been a success. A professional film crew went around capturing beneficiaries of the project for a promotional video and interviewed various stakeholders. A government official applauded Aid Global for acknowledging the plight of people with disabilities through national and international legislation towards their inclusion. His words on the project’s impact were repeated in the glossy, photograph-filled brochure that was published after the event: “They [people with disabilities] are now recognized, respected as full and equal members of society, with increased self-esteem and reduced dependence on other people.”5
They [Aid Global] helped us a lot, and if they were still here, maybe they could have been helping us with more good things. They helped us with water, and I think they would be giving us more of those soaps that we are missing. They said that they were going to give us goats as well, but they left before that project was put into action.
I started the main phase of my ethnographic research in Kyangwali just a couple of days before this celebratory event, but I had come in contact with Aid Global’s project when I visited Kyangwali on earlier occasions the previous year. Initially, the disabled people I interacted with had appreciated the intense attention and special assistance given by Aid Global. They perceived the project as very generous in comparison to what other aid organizations in Kyangwali had to offer. Over the course of my engagement with them throughout
These different feelings of hope, possibility and disappointment that evolved around Aid Global’s project exemplify disabled people’s experiences with the aid system more generally. Yet, rather than simply being a result of the limitations of Aid Global’s project, I will argue in this book that disabled people’s experiences with the aid system stemmed from an encounter of the different logics and practices of distribution at play in Kyangwali. By logics of distribution, I mean the principles upon which a person was deemed entitled to assistance and resources, and could claim them. Importantly, while the aid agencies had an explicit discourse about their logics in written guidelines, policies, and procedures, this was not the case for the refugees. This book is therefore equally concerned with practices of distribution, expressed both in actions and words.
Logics and practices of distribution shaped the relationships between aid agencies and their beneficiaries, disabled people, in manifold ways: through humanitarian assistance categories that defined and channelled access to aid, or through the ways disabled people understood their own position in the social fabric of the aid system, its organizations and their staff. In examining these different logics and practices, it became exceedingly obvious that aid agencies’ assumptions about who should be entitled to what support, based on which principles, often did not align with refugees’ perceptions and expectations, and thus often failed to fit their realities.
2 Disability as a Distributive Category
Disability can be defined in terms of ideas and values about distribution. So argues political scientist Deborah Stone in her seminal book The Disabled State (1986), in which she shows how disability as a category determines who is entitled to social aid. With the emergence of the disability category within welfare states’ distributive mechanisms, certain kinds of people – formerly targeted as the infirm, invalids, lunatics or defectives – have been assigned a social and political identity, either as one of a group, or as individual citizens. The relationship between disabled people and the global aid regime was constituted similarly to that between states and citizens: my interlocutors in Kyangwali
When I inquired about disabled people during my first encounters with aid workers in Uganda, they immediately referred to the humanitarian assistance category ‘PSN’, which stands for ‘person with specific needs’. They also pointed out that this category had to be distinguished from the ‘EVI’ category, which stood for ‘extremely vulnerable individuals’ and may or may not include people with disabilities. Disability thus worked as a distributive category within a larger standard set of hierarchically ordered categories and sub-categories that aimed at distributing scarce resources in the most fair and effective way possible. Like people with disabilities, orphans, elderly people, single mothers or those with chronic medical conditions were also categorized as being vulnerable, due to their assumed physical, economic or social disadvantages.
In Kyangwali, as in every other context in which it operates, the UNHCR’s approach to ‘vulnerable’ people7 was guided by the UNHCR booklet Guidance on the Use of Standardized Specific Needs Codes, which informed about the use of the PSN category. It divided the category ‘Disability’ (coded DS) into the sub-categories physical, mental, intellectual, or sensory impairments and disabilities. These sub-categories were further divided into ‘moderate’ and ‘severe’. As universal codes, they were used to manually and biometrically register refugees upon their arrival, but also in ongoing needs assessments. The EVI category that designated ‘extremely vulnerable individuals’ was used to indicate priority eligibility for any kind of support. In Uganda’s refugee context it was especially relevant regarding food aid.
The categorization approach to vulnerability was implemented worldwide through the working procedures of the UNHCR and its partners, the various humanitarian organizations active in a particular refugee context. By
A focus on these categories is important because they impact on matters of distribution and personhood, and because aid workers and aid recipients alike deal with them on an everyday basis: for assessing and registering information about people, for programme planning, reporting and accounting, as well as for allocating aid and services like hut construction or resettlement to a third country. In contrast to the detailed documentation on the inclusion and exclusion criteria of the PSN or EVI categories, there was almost no written guidance on the entitlements that resulted from these categories. The entitlements were subject to constant changes in funding and funding priorities, yet they determined a refugee’s opportunities to access aid immensely.
Very early on in my fieldwork in Kyangwali I observed for myself that disability could be a desired category. When I made my way around Kyangwali, I was frequently approached by strangers pointing to a scar, a slightly malformed finger, or putting their hands on their hips to emphasize their claims that “I’m also a person with a disability!” As humanitarian aid was present in the Eastern Democratic Republic of Congo, where most of my interlocutors had fled to Uganda from, residents in Kyangwali were well aware that people with lost limbs, deformed legs or back injuries were perceived as vulnerable by the aid agencies and therefore qualified for special support. As they knew about the potential advantages of being categorized as disabled, it was unsurprising how many of them identified themselves or someone they knew and cared about as such. Disability was thus an important and contested category in Kyangwali, the definition of which was constantly being negotiated by affected people and aid organizations alike.
The distribution of aid or assistance of any kind by the means of categories always requires applying objective criteria to define how deserving an applicant is. Social scientists have demonstrated how these criteria for disability are grounded on assumptions about inability and dependence, which are above all medically defined and based on the individual body (see e.g. Ingstad and Whyte 1995; Kohrman 2003; Petryna 2013; Stone 1986). This book further explores how people with disabilities were considered and categorized as being in need of assistance, and what kind of aid this entitlement entailed. However, it considers these questions in an institutional and social context,
3 Different Logics of Distribution
In welfare states, the basic principle of distribution is work (Stone 1986, 15). State-based social security systems target citizens who are unable to work, such as the elderly, the disabled, or those caring for children, as being entitled to claim social benefits. The concept of disability became especially relevant in this development during industrialization, and capitalism rendered people with disabilities into the category of those being eligibly dependent (Oliver 1990). In a society where each individual is responsible for fulfilling his or her needs by working and earning, the disability category functions as a boundary device to define the line between the ‘normal’ state of work and social benefits (Stone 1986, 21).
The centrality of work for distribution says something about personhood and ideas of dependency in the global North more broadly. People are ideally expected to be independent through work, instead of being dependent on social aid. Thus, the notion of independence, as inscribed in disability through its absence, is at the core of a Western individualized understanding of body and personhood (Devlieger 2023, 7; Ingstad and Whyte 1995, 11). Moreover, values of equal opportunity derive from a Western ideal that Ingstad and Whyte have called a ‘desirability of equality’. For people with disabilities, this ideal became important after the First World War in Europe when, in order to care for the war wounded, rehabilitation emerged as the response to restore a previous, assumed ‘normal’ condition, and special entitlements were given to support people who had difficulty competing within the labour market (Ingstad and Whyte 1995, 7–8). Although these understandings of disability and broader ideas of personhood and distribution are anchored in very specific historic and cultural backgrounds, they travel in definitions, criteria and standards that are seemingly universal (Ingstad and Whyte 2007, 2). They came into contact with disabled people in Kyangwali through the humanitarian assistance categories, as well as disability programmes.
In geographical settings where possibilities for formal employment or social security through welfare institutions are largely absent, distribution works differently. In his book Give a Man a Fish (2015), James Ferguson leads us through distributive practices within the pre-colonial Ngoni state, colonial and apartheid Southern Africa, ultimately drawing our attention to the ongoing importance of relations of patronage in contemporary South Africa. He shows how
Although not dealing with the issues of disability or displacement, Ferguson’s work on the politics of distribution in southern Africa is of special importance to me, as he tries to differently value dependency in its respective contexts. He argues that people in southern Africa desire dependent relationships with powerful others because these allow them to make claims from their patrons (2015, 25). He introduces the concept of ‘distributive labour’ to demonstrate that the ability to make claims on other people’s resources is the result of the “long and careful work [that] goes into building the sorts of social relationships that make such distributive flows possible” (97). This represents a radically different stance on dependency from that in the global North, where a predominant fear of dependence has derived from the Enlightenment paradigm that promoted individual freedom and equality. To position oneself as dependent, Ferguson argues, is perceived as the exact opposite of this developmental progress (143).
This also reveals how far dependency is perceived as something inherently negative within the humanitarian world. Anthropologists have critiqued humanitarian interventions along this line, by pointing out that they produce highly unequal relationships between displaced people and humanitarian agencies (Harrell-Bond 2002; Harrell-Bond et al. 1992; Malkki 1996; Müller 2013). In Kyangwali I observed that aid agencies saw the so-called ‘dependency syndrome’ – the fear that aid creates passivity and excessive demands (see Harrell-Bond 1986; Malkki 1992; Nabenyo 2019) – not only as problematic for the refugee population in general, but for disabled people in particular. An aid worker articulated this in an interesting way, when she evaluated Aid Global’s project: “Sometimes the ‘disability syndrome’ is in the mind, so the more we bring them [people with disabilities] on board, the more the level of dependence will reduce”.8
4 Uganda’s Success Story: Promoting Self-Reliance
In 2017, Uganda became the largest refugee hosting country in Africa, when it reached the record number of 1.4 million refugees, mostly from South Sudan (1,037,400 refugees) and the Democratic Republic of Congo (226,200 refugees) (UNHCR 2017, 17). Uganda then not only hosted the third highest number of refugees worldwide (after Turkey and Pakistan), but had also adopted one of the most progressive refugee policies that existed in the world (Betts et al. 2017). “Is Uganda the Best Place to be a Refugee?”, asked an article in The Guardian from 2016, reviewing the country’s unusual open policy for refugees (Patton 2016). On several other occasions during the ‘Refugees Welcome’ campaign in Europe, Uganda featured in the Western media as an exemplar for its progressive refugee policies, particularly when considering what available resources an African state is assumed to have to host refugees (e.g. Givetash 2018; Thompson 2016; Urech 2017; Wülser 2016).
Uganda had become known for its unusual open refugee policy since the implementation of the Uganda Refugee Act in 2006 and the Refugee Regulation of 2010 (Givetash 2018; Patton 2018; Thompson 2016). It granted refugees rights to property, work, and movement, as well as access to public services including education.9 Most crucially, it aimed to encourage refugees
The naming of these policies – self-reliance, development, empowerment – are telling in regard to this overall transition from emergency assistance to development-oriented refugee aid, which is a wider global phenomenon. Since the late 1980s, diverse actors have pursued the idea of self-reliance – not only in refugee camps, but also in development cooperation and the fight against poverty. In line with neoliberal values as a governing principle, various measures encouraged refugees to actively take on more responsibility to meet their basic needs in order to get by with as little humanitarian aid as possible (Ilcan et al. 2014, 1; Ramsay 2017, 85; Svedberg 2014, 12; see also Easton-Calabria and Herson 2020). Uganda’s settlement approach ought to provide an enabling environment in which refugees can develop their capacities and – at least in theory – become economically independent. This was implemented in practice by allocating land to refugees in 14 assigned rural settlement areas, where they could carry out subsistence agriculture.11 Refugees were initially given food rations and materials to build a home, and given access to basic health care and education – services which were not provided (for free) to refugees living outside the settlement areas.
The Kyangwali refugee settlement hosted around 40,000 people in 2016, mostly from the Democratic Republic of Congo, and was – like other refugee settlements in Uganda – not fenced, in order to facilitate entrepreneurial activities. The biggest of its 16 villages at the entrance to the settlement, Kasonga, offered a range of shops, restaurants and bars, and was home to hairdressing
The 147 square kilometres of land were allocated to host Rwandese refugees in the 1960s as they were sparsely populated (Adelman and Suhrke 1999, 10). After the majority of Rwandan refugees were repatriated from Uganda in 1994–1995, the settlement area was declared vacant until 1997, when Congolese refugees began arriving with the rise of the current crisis in Eastern Congo (Werker 2007, 463). During my fieldwork, the place did not look much different from other places in rural Uganda. Some of the homesteads with grass-thatched or iron-sheeted roofs, sometimes equipped with a solar panel, were of a more temporary nature though. The people’s clothing could also be discerned as a difference. The traditional kitenge13 dresses were much more common than elsewhere in Uganda, and a noticeably large number of people wore T-shirts bearing the logo of a humanitarian organization.
In theory, a clear distinction is made between refugee settlements and refugee camps: the latter does not provide access to land for farming or freedom of movement, and has a much denser population (see e.g. Schmidt 2003). In Kyangwali, the borders of the settlement were somewhat fluid. According to Uganda’s Refugee and Host Population Empowerment Strategy (ReHope), 30 percent of the assistance that humanitarian organizations provide should reach the host community. Basic services like education and health facilities were meant to be also accessible for Ugandans.14 Most of the Ugandans living in close proximity to the refugee settlement were of Batooro origin and thus spoke a Bantu language, which considerably eased communication between the refugees and their hosts. They interacted in various ways, for example as
Although the borders were fluid, they did exist, and could mean barriers in certain circumstances (see Turner 2016, 141). Freedom of movement, for example, was not always as simple as it seemed. While not legally required, people in Kyangwali often waited for days to receive a ‘movement permission’ issued by the governmental camp authorities – a document that officially served as protection, for example during police inquiries. Some of the literature thus suggests that camps and settlements are essentially the same when it comes to the ways that people are organized and controlled (Hovil 2007; Kaiser 2008; Malkki 2012). Although humanitarian and governmental staff in Uganda reprimanded me vehemently when I used the word ‘camp’ – in their eyes erroneously – in this book I will use the terms settlement and camp interchangeably, acknowledging both the differences and similarities between these structures, and acknowledging the way that my interlocutors called it campu in Swahili.
The official authority in Uganda’s refugee settlements was the Office of the Prime Minister, which houses the Directorate of Refugees. Referred to simply as OPM by refugees and humanitarian staff alike, their offices were situated right by the entrance to Kasonga, the settlement’s largest village. A forest of signposts announced their presence and pointed towards the offices of the various UN agencies and NGOs operating in the settlement. The OPM’s main activities were to determine refugee status and to allocate land to refugees, as well as to physically protect the refugee population, through the presence of the army and police. People who held a high military rank usually occupied the senior posts of settlement commandant or deputy settlement commandant in the OPM. People often queued up in front of the gate to the office compound while waiting to be issued with all sorts of documents – refugee attestation cards, food ration cards, or permits for travelling outside the settlement.
The UNHCR offices were much less accessible, their high new walls in gleaming white and blue surrounding their expansive compound, topped with barbed wire. The UNHCR’s mandate in Kyangwali was to protect refugees in line with the UN Refugee Convention, and it coordinated and monitored diverse activities between the various implementing and operating partners in the camp. As the main donor, it decided which responsibilities and domains were awarded to which NGOs as implementing partners.15 While not
Not just the humanitarian assistance categories, but also the physical structure of the camp, the legal framework, as well as international policies served as practices and measures through which to implement Uganda’s self-reliance strategy. In the Kyangwali refugee settlement, most people had fled from Eastern Congo between 1998 and 2014, leaving behind all their worldly goods, and often losing family and friends during violent conflict and displacement. In the remote area of Kyangwali on the shore of Lake Albert, they were given land to cultivate and build their new homestead on. I was intrigued to discover how people with bodily challenges were considered in this physical and institutional environment that clearly assumed able-bodiedness as its norm. The idea was that refugees should become self-reliant by farming the land allocated to them, while the aid agencies gradually scaled back their relief operation by reducing and eventually phasing out their food rations. People who struggled to use the land efficiently due to their health status, age, mobility or the number of dependents they had to care for were categorized as ‘extremely vulnerable’ and entitled to special food aid. It was against the background of the self-reliance strategy that my research interest fell on people with motor and mobility disabilities.
5 On the Humanitarian Agenda: A Paradigm Shift
In April 2015, when Aid Global’s project ending event took place in the Kyangwali refugee settlement, paying special attention to disability among refugees was a rather recent development. The UNHCR had adopted the Conclusion on refugees with disabilities and other persons with disabilities protected and assisted by UNHCR in 2010 (UNHCR 2010), and published guidance on Working with Persons with Disabilities in Forced Displacement in 2011 (UNHCR 2011b). More recently, the Charter on Inclusion of Persons with Disabilities in Humanitarian Action was developed in advance of the World Humanitarian Summit in May 2016, and then ratified, aiming to reduce barriers for people with disabilities within the humanitarian context (UNHCR 2016a).
When the UNHCR extended its original mandate – the borders of Europe and the 1951 Refugee Convention – its founding principle of legal protection was also transformed: from legal advice to humanitarian relief. With its expansion, the assistance itself became tailored more and more to specific groups of people. Historian Joël Glasman has examined this for the African Great Lakes region, arguing that the UNHCR’s expansion demanded a specialization of its interventions and resource allocation (2015). Thus, categorizations became more important and the UNHCR increasingly prioritized refugees through a prism of needs relating to their level of vulnerability. In the 1980s and 1990s, experts in health, nutrition, education, shelter, and sanitation defined UNHCR’s ‘minimum standards’ for assistance, and the basic needs of refugees became associated with immediate, life-saving services in emergency situations. People were thus classified not only according to their legal status, but also according to their – often bodily defined – vulnerability.
The concept of vulnerability is important for recognizing and protecting marginalized groups and individuals who are at risk. It evokes “the need to help” (Malkki 2015), and is therefore also important for aid organizations’ fundraising activities. However, in recent years prior to my fieldwork there had been an important paradigm shift in how it was thought disabled people should be recognized as in need of attention and support, and how the aid agencies should best address their situation: while approaches on disability in humanitarian settings were long embedded in a medical and rehabilitative paradigm (Mirza 2011b, 1528–1529), attention had increasingly shifted to focus on issues of accessibility and human rights. It is no surprise that the initial focus on disability in humanitarian settings was individualized and medicalized: humanitarian approaches are typically embedded in principles of charity and draw on compassion as the rationale for intervention (Ticktin 2006, 34). With its overall imperative to reduce suffering and save lives, the humanitarian approach towards disability has thus centred on vulnerability in the individual person’s body. Within a more holistic approach that focuses on human rights, however, vulnerability was becoming situated within social and environmental structures. This approach argues that people are not vulnerable per se, but are more or less vulnerable in specific situations and due to certain circumstances (Clark 2007; Clark-Kazak 2011; Epstein 2010).
Within humanitarian practice, the focus on rights presents disabled people as being capable and active, instead of viewing them as vulnerable and passive victims (Njelesani et al. 2014, 85). Consequently, rights-based approaches advocate creating equal opportunities and access for disabled people, and overcoming discrimination through advocacy, empowerment and participation, instead of merely providing emergency aid in the form of material assistance for basic needs with the idea of compensating for a bodily deficiency. This shift from charity to rights is relevant not only in relation to disabilities, but also within a broader sustainable development discourse, as in the Global Agenda 2030 (UN 2015), in which the ideals of inclusion and equality have a firm standing.
In a refugee policy context that starts from the premise of able-bodiedness, and at a time when disability is high on the humanitarian agenda, it is crucial to ask what it actually means to live as a refugee with a disability in Uganda. What is the significance of being categorized as disabled at this specific historical moment during a paradigm shift that places disability and its assumed vulnerability in a new light? This book diverges from the commonly-held view in much policy and other research that, when protracted refugee contexts intersect with disability, “the situation can be nothing short of toxic”, as Maria Pisani and Shaun Grech write (2017, 431).16 Rather than viewing intersections
6 When Aid Agencies Become Patrons
In addition to physical challenges or institutional blind spots, the aforementioned reports and literature consider disabled people to be vulnerable in displacement contexts due to the loss of important social relationships. They identify women, children and older people with disabilities as particularly vulnerable in such situations, being exposed to discrimination, exploitation and sexual and gender-based violence (e.g. Reilly 2008).17 Violent conflict in Eastern Congo and displacement certainly had led to drastic ruptures in my interlocutors’ social relations. They had lost or left behind family members, friends and neighbours. The large majority of disabled people I interacted with in Kyangwali were living with a spouse and their children. Yet, the network of extended kin had decidedly reduced, and no one I knew had a big circle of aunts, uncles or cousins nearby to draw on when in need of money for medicine or scholastic material, for example, or when seeking assistance for daily activities like child care, gardening or looking after a disabled or ill family member.
While social relations play important roles for everyone, they have significant implications for disabled people, compared to other refugees that often
In this book I argue that, in a way, the aid organizations became important providers through which claims could be made, support be secured and belonging negotiated as an alternative or an addition to people’s social networks. An incident at the World Refugee Day celebration in Kyangwali in 2014 exemplified these patron-client relations between the aid organizations and my interlocutors. Like any other organization, Aid Global had distributed promotional T-shirts to some of their beneficiaries that day. One of their aid workers handed a T-shirt to a disabled woman, who instantly pulled it on over the top of a T-shirt she had previously received from another aid agency. Seemingly offended by this act, an aid worker from the first organization approached the former, arguing that this person “belonged to their organization” (see also Whyte et al. 2014, 56).
‘Belonging to an organization’ has parallels with longstanding discussions about the concept of patronage in the workings of African political systems, in which moral obligations and expectations are structured around vertical ties of personal interdependence (e.g. Fortes and Evans-Pritchard 1987; Miers and Kopytoff 1979; Vansina 1990). Africanist scholars emphasize that actors are both patrons and dependents within long hierarchical chains of support: patrons need to fulfil their clients’ expectations to retain their reputation, while clients have to be loyal (Chabal and Daloz 1999). ‘Wealth in people’ (Miers and Kopytoff 1979) or ‘having people’ (Smith 2004) is what counts, because both clients and patrons provide access to opportunities and resources.
Social scientists have started drawing attention to how international NGOs and their representatives are increasingly taking on this role in societies where people are constantly looking for patrons and resources. Of particular interest is what clients do for their patrons in these relationships, such as providing information or being present when donors visit local NGO projects (Swidler 2009), or that aid in the form of charity seems to be more in line with the workings of patron-client relations than a form of aid that aligns with contemporary ideals of sustainable development (Scherz 2014). Building on these studies, in this book I look, on the one hand, at the interdependent relations between service providers and their own donors. On the other hand I inquire into how
Although a standardized categorization system with defined criteria guided the distribution of aid in Kyangwali, the interdependent relations between the beneficiaries, the service providers and their donors thoroughly shaped this seemingly transparent aid distribution. Access to aid was based not only on an applicant’s categorization as a PSN or EVI, but also on the hierarchical chains of support between different service providers and the funds they had available, as well as donor prioritization. Whyte and Siu draw on the concept of contingency to think about the interplay of personal and impersonal dependencies, distinguishing between social and historical contingencies. By the latter, they mean the largely impersonal interdependent relationships with institutions that are themselves linked to, and dependent on, larger events (2015, 20). I too analyze people’s dependence on changing donor priorities or political conditions in Kyangwali as being historically contingent – as processes on which people are ultimately dependent but have no chance to directly engage with through personal relationships.
Yet, access to aid was also thoroughly shaped by disabled people’s personal contacts with the aid agency staff who administered categories, conducted interviews, and made assessments. Aid agencies also depended on the beneficiaries’ cooperation – to follow the given procedures for aid distribution, to provide information and signatures and to be physically present – in order to keep the donor money flowing. It was particularly interesting in these interdependent relationships when disabled people expressed to aid workers their mistrust about the aid delivered – a very common situation – insisting on a certain morality of exchange, grounded in a logic of distribution in which they perceived the aid agencies as their patrons who also had to fulfill obligations towards the refugees. Especially as these agencies were powerful organizations that were obviously connected to a world of wealthy donors, disabled people felt that their initial and promising recognition as refugees did not materialize, leading to a pervasive and profound disappointment.
7 What it Means to Be a Beneficiary
Anthropologists have also analyzed the relation between people and aid programmes through notions of therapeutic (Nguyen 2008) or biomedical citizenship (Biehl 2004), showing how practices of legal recognition and claim-making have emerged in institutions and social arrangements around global health
What was conceptually important about disabled people’s relations towards the aid agencies in Kyangwali was that their position did not fit conventional approaches to either ‘clientship’ or ‘citizenship’. Citizens have rights, which, depending on the context, they can more or less successfully claim for. The concept of citizenship is predominantly imagined within the domains of equality and rights and in direct contrast to hierarchical and clientelistic relationships (Ferguson 2015, 236). Clients receive professional services, but have to give something in return (Whyte et al. 2014, 57). Disabled people in Kyangwali were mainly referred to, or referred to themselves, as ‘beneficiaries’. Being a beneficiary, as I argue in this book, implies above all the expectation that a person will receive something ‘good’.18 Within the disability movement that promotes the slogan “Nothing About Us, Without Us” (Yeo and Moore 2003), as well as in contemporary aid discourses, the term ‘beneficiary’ is despised, being perceived as counter to the promoted ideals of empowerment and inclusion. Yet it is what people used on the ground, and many disabled people’s experiences can actually be understood from this viewpoint.
By entering into dialogue with concepts of citizenship and clientship, I consider in which ways disabled people’s positions and experiences as beneficiaries in Kyangwali also differed from what these concepts describe. For this I draw on Julia Eckert’s approach that considers citizenship as something fundamentally social that develops in interactions with others, arguing that the understanding of rights and the perception of oneself as a rights-bearing subject emerge in social relations – collectively with others, or by comparison to others (Eckert 2011, 313). Based on my research, I argue that disabled people’s sense of entitlement was predominantly derived through comparisons with the benefits given to other people, in other times and places, as well as
Furthermore, the relationships that evolved around Aid Global’s project and people’s identification with it did not emerge first and foremost from shared experiences through bodily difference, as anthropologists have observed in other contexts, termed as biomedical or therapeutic citizenship (Nguyen 2010; Rose and Novas 2008). My interlocutors in Kyangwali rather gathered as a group of people with disabilities when meetings were initiated from the top down. Meetings were not primarily used by disabled people to share their experiences, and did not noticeably shape new identities and socialities around them based on their bodily difference. When disabled people told me Aid Global was the organization that recognized them, I first thought they meant that the organization was promoting their rights, or that they talked in support groups about what it meant to be disabled. Instead, taking part in such events predominantly provided opportunities to forge connections with important people and access to material benefits. That’s what my interlocutors were much more interested in than in rights-based activities such as awareness-building and training workshops.
However, when the support they expected from their recognition by the aid organizations did not materialize, the disappointment was great. At times, this disappointment took on an existential dimension, since interventions for refugees as beneficiaries, unlike aid in other settings, were based on their entire life worlds, considering that they had to build a new existence from scratch in a refugee camp. In addition, beneficiaries in general are in a much weaker position to complain than clients who, on the one hand, receive a professional service and, on the other hand, have a choice between different providers if they are not satisfied with one’s services (Whyte et al. 2014, 57). This was not the case for people with disabilities in Kyangwali, where aid was much more located in the realm of charity. Not only did they lack any choice of service providers, they were also expected to be grateful for, and appreciative of, any help they received, rather than complaining about its inadequacy.
8 Opportunities and Unintended Consequences
Yet, many of the people who had garnered one of the fancy bronze walking sticks from Aid Global liked to use them in public, and it seemed that nobody was ashamed to wear the green T-shirts and hats emblazoned with the organization’s logo. Just as Adriana Petryna argues in her study about biological citizenship after Chernobyl, a deviant body in Kyangwali was not something to be concealed, but rather to be exposed and used as a resource in order to be recognized and supported (2010, 208; see also Hollander and Gill 2014). This book supports this argument, revealing how disability actually gained important significance in a refugee settlement, instead of being rendered invisible and forgotten or of creating a situation that was “nothing short of toxic”. Despite the exclusionary characteristics of aid distribution that I will reveal in this book, I argue that special aid repositioned disabled people in these new communities in important ways. Even with all the challenges, life in the camp also opened up opportunities for people with disabilities – opportunities that they would not have had otherwise. Through their refugee and disability status, they could make important claims and receive assistance that was not available to either non-disabled refugees or Ugandan citizens. This demonstrates how the assumed ‘double vulnerability’ of people with disabilities also became
Ethnographies of disability in the global South have shown that the introduction of disability programmes has often conflicted with local contexts, where they did not seem to fit easily. They have shown that many African languages did not even include a word to describe individuals with different kinds of bodily impairments as a group for a long time (Livingston 2005, 10; Ingstad and Whyte 1995, 6–7). The term ‘disability’ is not easily translatable, as it conveys Eurocentric assumptions about normality and abnormality, especially in regard to what is experienced as disabling for personhood (Ingstad and Whyte 1995), and as it portrays meanings that are connected to a Western history of social exclusion, stigma and rehabilitation, but also of a struggle for political recognition.
Yet, despite its limitations, the international circulation of disability programmes based on a human-rights approach has opened up new spaces of identity building, recognition and claim-making based on the body (e.g. Berghs 2012; Biehl 2007; Nguyen 2010; Petryna 2013; Phillips 2011). In fact, the inhabitants of Kyangwali witnessed an influx of Western institutions, ideas and capital, which brought about similar trajectories to the developing welfare state: social assistance for disabled and other ‘vulnerable’ people, implementation of rehabilitation programmes, as well as a focus on sensitization about modern values, such as gender equality and hygiene promotion. Like much of the anthropological body of work in humanitarian settings, this book highlights the often undesirable outcomes of well-intended humanitarian work – although with a different focus. While much research has fundamentally criticized the medicalized perspective taken in humanitarian approaches, such as by emphasizing its depoliticizing and dehistoricizing effects (e.g. Fassin 2012; McKay 2018; Rieff 2003), I question the relevance of the apparently so promising rights-based approach for disabled people themselves.
For this, I specifically observed the shift from a more charitable towards a sustainable development approach based in rights and investigated what this meant in reality for people with disabilities in the Kyangwali refugee camp. Of specific interest for this point was the one-year Aid Global project on ‘Inclusive WASH’ (water, sanitation and hygiene) from 2014–2015. This project engaged people with disabilities to participate not only in designing various assistive technologies (e.g. accessible boreholes or special toilet seats), but also on other issues, such as challenging stigmatization, through a drama group. Futhermore, the project formed a disability association with disabled people as representatives, who assisted the project to mobilize people with disabilities for
The shift from a charitable towards a rights-based approach was rather a new development within the humanitarian world. And interestingly, anthropologists had earlier observed and criticized the trend in the other direction. Didier Fassin and Miriam Ticktin, for example, both commenting on a turn from rights to humanitarianism within French immigration and asylum politics – noting, for example, that human rights violations were increasingly being presented in terms of the suffering body. Importantly, they criticized how the medicalization of refugees and the focus on saving lives undermines claims to further social justice (Fassin 2001; 2012; Ticktin 2006; 2011a). Unlike the asylum situation in France and Western Europe more broadly, during my fieldwork I observed instead a turn towards a rights-based discourse about people with disabilities within humanitarianism, following on from the UNCRPD. In this book I will reveal the limitations and dangers of this rights-based approach in the specific setting of a Ugandan refugee settlement, especially by considering what people aim for in life and how they best can achieve it.
9 Becoming a Person through ‘Building’
To address the question of what my interlocutors aimed for in life and how they could best achieve it, it was necessary to consider what it means to be a person in any particular society. Even though there is no single notion of ‘personhood’ in African contexts, as Comaroff and Comaroff (2001) point out, literature from different central African contexts often reveal similarities. Referring to the Tswana of southern Africa, Comaroff and Comaroff demonstrate how personhood is something predominantly social, asserting that it is acquired through building and extending oneself through relations, and that it continuously needs to be confirmed through investing in these social connections with loyalty, care and financial resources (2001, 267–269). Regarding personhood in Uganda, Scherz shows that “one increases one’s standing and sense of being a full person by attaching oneself to others and by acquiring clients, not by becoming ‘independent’” (2014, 2).
Boaga, or building, is an important concept in Tswana personhood and life strategy, as it is for many people in the wider African region. ‘Building’ continually reaffirms personhood by forging connections over time and across generations – linking the doing of today and yesterday with tomorrow. Building may mean building families, herds, houses, churches, or small businesses such as tuck shops or poultry runs; accumulating furnishings and crockery; or developing gardens or orchards. All are important markers of adulthood, responsibility and success, and all build persons. (15)
Among the Banyabwisha from Eastern Congo, of which origin many of my interlocutors were, there is a proverb: “The old man is accompanied by his good deeds”. This virtue of investing in good things resonates with what Livingston explains, the other way round, as “those who earn but do not build are seen as irresponsible, unanchored, and unknowable in some ways” (2005, 15). In Kyangwali, children were considered to have an especially high personal and social value, often expressed in the way that someone was addressed as a certain child’s parent, for example, as ‘Mama Patti’ or ‘Mama Bahati’. Children needed care, but they were also a source of support and, for many of my interlocutors, their biggest concern and worry was being able to provide a good education for their children.
In this book I will show that being able to ‘build’ seems to be a more important marker of personhood than physical difference. This raises the question of how far the aid system and its logics and practices of distribution enabled people to ‘build’. As a counter-narrative to the idea that aid keeps people in dependence and runs counter to ideas of sustainability and empowerment, I will show that, in Kyangwali, it was precisely the aid and, consequently people’s positioning as beneficiaries, that enabled them to use distributions to build life projects and to invest in the interdependent relations with family and neighbours that were so crucial for them. Rather than self-reliance in the sense of independence from others, including the aid agencies, disabled people’s aim seemed to be crafting a fruitful form of relatedness. Yet, on the ground the aid agencies were vehemently trying to prevent aid dependency, resulting in far-reaching, possibly unintended consequences around accepting disabled people’s dependence within their social networks. While disabled people’s complaints from their position as beneficiaries could well be understood as justified claims for more equality, the aid agencies usually dismissed them
10 Conducting Fieldwork with Refugees with Disabilities
During my 12 months of ethnographic research in the Kyangwali refugee camp, I interacted with 30 men and women who had paralyzed legs or walking difficulties due to polio in childhood, who had lost one or more limbs as a result of bullet wounds or burns, or had difficulty using an arm or leg or experienced pain because of an accident or chronic disease. People in Kyangwali who were not conversant in English used the Swahili words walemavu and vilema to refer to those people. Although both words derive from the description of people with paralyzed limbs, my interlocutors also used both words as an overall term for people with disabilities. They also employed the term kajoriti (a Swahili rendering of the word ‘casualty’) for people who had acquired a disability through an injury or accident of any sort.
Although the term ‘disability’ cannot easily be equated with local understandings of bodily difference, I have decided to use ‘disability’ as an umbrella term to mean all of the diverse bodily impairments I encountered among my interlocutors. The way the word was introduced through the humanitarian interventions in Kyangwali, and how disabled people and aid workers used it alike, also made it an emic term which carried connotations of discrimination or political recognition. Given the assumption of able-bodiedness in Uganda’s refugee approach, I did not include people with cognitive disabilities, blind or deaf people in my research. All of my interlocutors belonged to the category of ‘people with specific needs’ (PSN), but they were variously categorized in other regards, such as entitlement to special food aid. The kind of disability as well as its visibility often influenced their assumed degree of vulnerability and thus the assistance they were given.
During my fieldwork, which took place between April 2015 and May 2016, I stayed at St. Patrick’s Centre for Integral Development (SPACID), a Catholic diocese with a church and a guesthouse in the middle of the settlement, that was run by Ugandan staff. At times, other researchers were present, but mostly I met visitors from aid projects who stayed at the guesthouse for one or two nights. Often though, I was the only guest. I bought a solar panel for my own
The material used in this book was mainly generated through the methods of participant observation and different kinds of interviews with people with disabilities who had mostly fled from the Democratic Republic of Congo. The Congolese refugee population in Kyangwali was comprised of various ethnic groups from Eastern Congo, with the majority belonging to the Banyabwisha, who had fled from the North Kivu region around Rutshuru and Goma between 1996 and 2008 during the first and second Congo Wars of 1996–1997 and 1998–2003. The people who arrived after the more recent events of violence in Eastern Congo in 2012 and 2013 belonged predominantly to the Batalinga from in and around the Beni region.
I conducted most of my interviews with them in Swahili and Kinyabwisha with the help of my research assistant and translator Amani Bakunda. Amani was in his twenties and had lived for most of his life in Kyangwali, having arrived when he was just a few months old. Thanks to a scholarship, he completed his education at a Ugandan secondary school and occasionally had temporary assignments with the aid organizations in Kyangwali such as inventorying storehouses, setting up tents for an event, or identifying children with special educational needs. He thus had an immense knowledge of all sorts of aspects of the refugee camp.
I additionally carried out interviews with family members, carers or neighbours of people with disabilities, as well as with aid workers from the UNHCR, the Africa Help Mission (AHM) and the WFP. They were mainly from Uganda, but also from other diverse countries, and I was able to conduct these interviews in English. The work of the UNHCR’s main implementation partner AHM was of special importance to my research, as it was responsible for the ‘community services’ sector, targeted at the ‘vulnerable’ refugee population. AHM was also the main reference point for people with disabilities, as it led the camp’s health sector. I found it particularly useful to talk to half a dozen community social workers that AHM had engaged for tasks within these two sectors. Community social workers were refugees who held a position which functioned as a link between the aid organization and the refugee population. Their role was to identify ‘vulnerable’ people in their village, assess their needs, and inform them about any relevant meeting or aid distribution opportunity. It was often through these intermediaries that disabled people found access to the aid organizations.
During the initial phase of my research I conducted semi-structured interviews with my disabled interlocutors. The follow-up interviews I did were
Even though ethnographic research is very different from the research carried out by humanitarian organizations, the different ways of inquiry presented a very fine line for my interlocutors. I was often equipped with paper and pencil, and when I asked about someone’s experience with an aid organization, I received reactions such as: “We have already been asked the same thing you are asking me now.” To avoid this, I took steps not to be associated with the aid agencies. Hence, I travelled around on a bicycle or by foot, I visited people outside office hours, or took part in activities like preparing cassava leaves for dinner. The conversations that unfolded spontaneously during such visits, but also in the market or on the way to church, were about immediate happenings and concerns, and often provided a different picture of personal circumstances to what people told me in interviews. During these occasions I was introduced to relatives I had initially not known about, or was able to observe who undertook which tasks in the household, or who came by for a visit.
Although I tried to escape my ascribed role as a humanitarian helper, my interlocutors, not surprisingly, continued asking for help. And I started reporting to the aid offices when, for example, someone had not received their food rations, when a tricycle needed to be mended, or when an individual required
When disabled people asked for things such as a small contribution for transport or to buy medicine, I was often unsure how to react. I feared both enforcing the already asymmetrical relations and undermining the validity of my research findings. One of my interlocutors challenged me one day, asserting that it was problematic for me to ask questions about the adequacy of the food rations without offering something to eat after receiving a negative answer. Such incidences sometimes left me wondering if the assistance was indeed insufficient, and whether I had succeeded in collecting what I initially thought of as the ‘real’ information.
While I sometimes helped someone out with a little money, at other times I found myself justifying that it was not my role to take over the humanitarian agencies’ responsibilities or that it would create problems if I gave something to one person but not to another. Amani seemed uneasy when he had to translate my statement that I was unwilling to provide any individual help. There were instances when I overheard him saying that I had money problems at the moment, or similarly, that I was ill when I had not paid a visit to someone’s place for a long time and they wanted to know why. At that point in time, I was indignant about the liberties Amani took with his translations, and came to appreciate some of its nuances only later. I was sometimes also irritated when my interlocutors demanded me to help them acquire expensive made-to-measure mobility appliances or medical referrals for surgery at one of the best hospitals in the country – especially when I compared the assistance they were already receiving to services that people with disabilities can expect in other rural areas in Sub-Saharan Africa (see also Cole 2018). I similarly felt puzzled when I visited a family with a newborn baby, taking the usual gifts of soap,
My persistent incomprehension of such situations can be understood as what Michael Agar has called ‘rich points’ – the moments in research the ethnographer repeatedly does not understand – suggesting a mismatch between one’s own, usually implicit, assumptions about how the world works and what actually happens (Agar 1996, 31). It was only when I was preliminarily analyzing and coding my data, after a few months of fieldwork, that I realized how frequently such claims and complaints occurred and what significance they might have. What did they contain, who were they being made to, in what ways, and in which situations? What expectations did different actors have, and how did they express them? I realized that a big part of my existing data already answered some of these questions, and I tried to specifically focus more on them in the course of my research. As I reflected on these often uncomfortable experiences, I tried to understand why I felt more at ease giving someone something without being asked, as when I sometimes took bread or sugar along on my visits. And I asked myself why I felt particularly offended when I was asked for something I deemed inappropriate. I also realized that I was less reluctant to comply with someone’s request for money if I felt it was reciprocated, for example when a recipient mended my broken sandal in return.
Through my reflections I became increasingly aware of my ethnocentric reasoning. In many respects, my discomfort resulted from my unquestioned assumptions about what it is appropriate to ask for, or my own expectations of how gratitude or even equality should be expressed (see also Durham 1995). I especially became more conscious of my negative stance towards charitable actions, although it was actually me who was profiting immensely from the information my interlocutors constantly gave me. More and more I began to conceptualize people’s approaches towards me as crucial claims of belonging towards people who were considered potential patrons or providers, and not just as a result of my skin colour or position as a researcher that I had to overcome. I remember when the penny dropped. I had overheard one of my interlocutors asking a disabled friend for a little money to fix his tricycle. Although he had mentioned before that he was having trouble with it, he did not ask me directly for a contribution. While some weeks earlier I would have understood this situation of not being asked for help as having built rapport, I realized at that moment that it instead reflected my interlocutor’s interpretation of my role as a researcher to whom asking for a financial contribution would not be appropriate in that context.
Retrospectively, I also saw the reasons behind Amani’s translations as a sign of expressing respect towards our interlocutors, by retaining the possibility
These insights certainly did not resolve my concerns about reciprocity and research integrity. However, rather than resisting existing social hierarchies as I had initially done, they allowed me to understand the claims from a different perspective, as a kind of sociality. On the one hand, instead of being a methodological obstacle to overcome, the way people approached me was what Whyte and Siu have characterized as “watchfulness for positive possibility” – people constantly being on the lookout for opportunities (2015, 28). On the other hand, I realized that people’s requests made me feel so uncomfortable because of my culturally ingrained reluctance to enable dependency. Over time I understood that, rather than disempowerment or passivity, they signified recognition and entitlement (Ferguson 2013). I became increasingly involved in such interdependent relations with my interlocutors, which allowed them to make claims from me.
11 Structure of the Book
After this introductory chapter, the book builds its arguments over three parts, which all provide a different way of looking at how people’s sociality is entangled with aid delivered through humanitarian assistance categories or disability programmes. Each part contains two substantive chapters, each of which I introduce with two case studies that illustrate the theme to be explored in the chapter. Each chapter emphasizes one or more aspects of the different logics and practices of distribution at play in Kyangwali.
In Part 1, I explore how aid for food and shelter is distributed and accessed in terms of categories of entitlement. Chapter 2, Food aid beyond survival, first discusses the vagueness of the EVI category along historical trajectories within the different institutions involved in food aid. It then explores disabled people’s claims that “the food is not enough” by looking closely at everyday concerns and practices around food. I reveal that special food aid, which is calculated as a means of survival, does not treat people who cannot undertake
In Part 2 I broaden the focus to the daily concerns of care and work. As well as delivering emergency assistance, the service providers in Kyangwali aimed to support refugees to re-establish a home and a social existence. Yet, their actual support in this regard was limited, and service providers not only called upon disabled people’s individual responsibility to become self-reliant, but additionally upon that of the families and communities in which they lived. I show, however, how the aid organizations’ assumptions about individual responsibility and community support often failed to fit the reality of people’s practices. In Chapter 4, Care for “people who cannot help themselves”, I examine the broader category of ‘vulnerable’ people and consider how care was assumed and practiced towards people with disabilities in the absence of extended families. I first challenge the ideal of community support in this context and then look more closely at the ideal of an independent self that was also being promoted in terms of how disabled people were perceived as managing their daily lives. The chapter then shows how aid enabled and played into relations of care that emerged in the absence of extended families. Chapter 5, Work in view of “the life of the hoe”, takes into account the concept of economic self-reliance. It reviews how the aid agencies offered solutions to people with disabilities who were largely excluded from becoming self-reliant through agriculture. The chapter highlights crucial tensions around the aid organizations’ emphasis on economic empowerment through sensitization and training on the one hand, and their reluctance to provide hand-outs in line with a sustainable development discourse on the other hand. I also consider the tension that arose when disabled people became economically successful and therefore
In Part 3 I turn to the more general questions of what ‘disability’ and ‘refugee’ as categories and concepts meant for aid organizations and refugees themselves. Chapter 6, Disability as a category of difference, analyzes how the aid agencies in Kyangwali approached disability – through both a medical and a social model. I examine the varying definitions of disability and show how categories of vulnerability were not clear-cut even to those implementing them, especially since they varied according to the aims and resources available to different organizations. The chapter investigates in what ways disability served as a category of difference, and shows that, even though my interlocutors made claims on the basis of their disabled bodies, such bodies did not necessarily imply impaired personhood. I then consider what the turn to a social model of disability in conjunction with a rights-based approach meant for disabled people in Kyangwali, and point out the limitations and consequences of this shift. In Chapter 7, When the heart does not settle – life in transit, I observe disabled people’s temporality in the camp and consider what the refugee category meant in relation to being disabled in people’s search for a home. Taking a stance against a sedentary view, I show that people did not want to return to the place they had fled from. Nevertheless, when they spoke about “a life of suffering”, they were referring to their life in the refugee camp. They drew on comparisons with a bygone home as a ground for claim-making in the present. The chapter also reflects on people’s future prospects from the resettlement programme to a third country in the US or Europe, and notes the ‘double opportunity’ that disabled refugees had in this regard.
The topics of food, shelter, care, work and the significance of being disabled and being a refugee were not only key in the interventions being provided, but also bring the reader close to the concerns of disabled people in the refugee settlement. The case stories at the beginning of each chapter give insights into a variety of lives, dreams and histories, but at the same time build the basis for each chapter’s argumentation and analysis. I also draw on these case stories in other chapters, while information about additional interlocutors provides evidence for my arguments and gives breadth and variety to my topics. As I will refer to my key interlocutors by their pseudonyms at several points throughout the book, each case story is described by three key words at the beginning, which is intended to help the reader remember better the various characters whose stories I recount. People’s case stories are followed by an introduction
In Chapter 8, the conclusion, Considering a different logic of distribution, I summarize my findings and arguments and make an overall appeal for considering a different logic, and thus practice, of distribution for disabled people in a refugee settlement. The chapter advocates taking a more differentiated view of dependency – with both theoretical and practical implications – and suggests recommendations for further research.
I use pseudonyms for all my interlocutors in this book.
A three-wheeled vehicle with a hand-crank.
I use pseudonyms for all aid organizations operating in Kyangwali except for the United Nations High Commissioner for Refugees (UNHCR) and the World Food Programme (WFP). This is partly to protect the anonymity of the staff, but also because the organizations discussed in this book represent many others.
I use the terms ‘disabled people’ and ‘people with disabilities’ interchangeably. The use of the ‘people-first language’ (i.e. people with disabilities) emphasizes that disability is not a person’s main signifier. The ‘disability-first language’ (i.e. disabled people) complicates this stance. Promoters of this terminology argue that the ‘people-first language’ inherently assumes that disability is something negative and advocate that disability should be celebrated as diversity or shared identity instead (see Mackelprang and Salsgiver 2016).
Aid Global, project brochure, handed out in Kyangwali in July 2015.
Several scholars have challenged existing conceptions of national citizenship in line with the globalization process. They argue that current forms of citizenship do not necessarily match territorial configurations, and that people are increasingly protected by, and entitled to support through, transnational institutions and international human rights frameworks (e.g. Eckert 2011; Feldman 2012; Ong 1999; Rose and Novas 2008). They show how practices of legal recognition and claim-making have emerged in institutions and social arrangements beyond the state, be it in refugee camps (Inhetveen 2010) or in global health projects (Biehl 2004; Nguyen 2008).
Throughout this book, I will put the word ‘vulnerable’ in quotations, when used as an adjective for people – assuming that it is certain situations and conditions that render people vulnerable, not that certain groups of people are vulnerable per se. However, this does not exclude a perspective that human life as such is something inherently vulnerable, as discussed, for example, by philosophers Martha Nussbaum (2009) and Martha Fineman (2008).
Aid Global, project brochure, 2015.
These rights are set out in the UN 1951 Convention and the 1976 Protocol in Relation to the Status of Refugees (Ramsay 2017, 85).
With the launch of the ReHope strategy in 2015, refugees were officially mentioned in Uganda’s ‘Second National Development Plan’ (GoU 2015).
The amount of land was allocated according to the size of a household on arrival: for both residence and agriculture, families of one to five people officially received a plot measuring 50 by 100 metres. Families of six to nine qualified for two plots, and bigger families for three plots (Norris 2013, 17; GoU 2014, 20). There were, however, significant changes in this land allocation over time, and the size of plots was repeatedly reduced or adjusted, depending on the number of refugees in the settlement at any particular moment. During the 2012 emergency, for example, when a large number of Congolese refugees arrived in Kyangwali, the plot sizes were reduced to 50 by 50 metres, and later on, residential land plots were again reduced to 20 by 30 metres (GoU 2014, 20).
Boda boda is the Ugandan description for motorbike taxis. The term derives from the border areas where they were initially used, as the conductors shouted out ‘border, border’ to attract clients.
Kitenge is the Swahili name for a widely-used, colourful printed fabric in East Africa. They are especially used to make women’s dresses, but they are also used as wrappers, headscarfs, blankets or baby carrying cloths.
Although the Congolese schooling system is based on French, once in Kyangwali, people received an English education according to the Ugandan curriculum.
In contrast to implementing partners, operational partners are organizations which have their own funding, but are nevertheless under the UNHCR’s supervision.
There is an expanding body of research that focuses on the hardships faced by refugees with disabilities and also, importantly, emphasizes vulnerability, barriers and discrimination against disabled people in displacement contexts (e.g. Couldrey and Herson 2010; Crock et al. 2012; 2017; HI 2015; Karanja 2009; Kett and Twigg 2007; Kett and van Ommeren 2009; Kett and Trani 2010; Mitchell and Karr 2014; Nagujja 2013; Reilly 2008).
I have refrained from using vulnerability as an analytical concept, not only because it is used by the aid organizations themselves, and often indiscriminately, but also because the word itself has little relevance in local usage. There is no word in Swahili that equates to the term ‘vulnerability’ or ‘vulnerable’. Disabled people as well as other refugees in Kyangwali used the expression watu wasiojiweza (Swahili for ‘people who cannot help themselves’) or the corresponding Kinyabwisha word batishobwoye to refer to ‘vulnerable’ people. These expressions were also translated by my research assistants as ‘the helpless’, ‘the weak’, ‘the needy’ or ‘the unable’. Furthermore, the aid agencies’ understanding of vulnerability had long considered certain groups and individuals as vulnerable per se (Bakewell 2008; Berghs 2015a; Clark 2007), and did not focus enough on the situations and conditions that render them vulnerable.
The term ‘benefaction’ is derived from the Latin word beneficium, composed of the terms bene (well, good) and ficium (-making), and thus can be understood as ‘doing good’ or ‘favour’ (Merriam-Webster 2018).
The belief that people with disabilities had traditionally been, and continued being, locked away in backyards as a general practice and attitude towards disabled people in African and other countries of the South was robustly denounced by Benedict Ingstad as ‘the myth of the hidden disabled’, the title of her book on community-based rehabilitation in Botswana (Ingstad 1997; for a critique see Livingston 2005, 186).
Aid Global, promotional video, shared with me in Kyangwali in July 2015.
Marine Thomsen used this term in her work with Congolese refugees in Tanzania at a presentation at the American Anthropological Association (AAA) Annual Meeting in Denver in 2015.
Even though I told them I would not use their real names in my research, they sometimes asked me to do so. I have nevertheless decided to use pseudonyms throughout, as I cannot guarantee that everyone’s perspective fits the characteristics of my research and its possible implications.