1 Case 9: Martin
Documents, human rights and the protection house
Martin had a special home in Kyangwali. Behind the small police station, a fenced compound enclosed two concrete houses with separate rooms. A uniformed police commandant scrutinized me critically, and told me not to open the gate for anyone, as people were under protection in this place. Martin sat in front of one of the rooms in a plastic chair, his legs stretched out on a wooden bench and a metal walking frame in front of the open door to his room. He listened to Lingala music playing from his radio, and showed me his glasses with a sigh. They had been mended with tape at the broken part in the middle and made it difficult for him to read. Martin apologized when he could not remember the English words he wanted to use during our conversation, so had to draw on French and Swahili expressions. I sometimes found it hard to decipher his words, but mainly because of his unclear pronunciation. One side of his round face was partly paralyzed, a remnant of a stroke he had experienced four years earlier.
Martin left Congo many years previously, leaving a wife and children behind, because he had been politically persecuted. He and his brother had traded cars from abroad in Uganda’s capital after he fled his home country. He told me a long story, supported by a multitude of documents – often both originals and copies – which he carried folded up inside his belt bag. Showing me his travel documents, he emphasized that it was important for him to be able to support himself instead of being dependent on the UNHCR, even though he had been given refugee status when he was living in Kampala. He fished out several police reports for me to read while he recounted how his brother had been poisoned. Following this incident, which led to his brother’s death, he told me that he had experienced a blackout when he was in court for his brother’s case. This made him believe that he might have been poisoned, too. He had great difficulty in remembering exactly what had happened after that, but he felt that his memories were becoming clearer and clearer every day.
Martin did not agree with his doctors’ diagnosis of a stroke, now unfolding a number of medical documents for me to have a look at. With a sharp laugh, he told me that Ugandan doctors did not like refugees, so would even write impossible things in their notes. Considering a stroke to be something that afflicted
Although Martin managed to do few things on his own, he was dependent on assistance in his daily activities. An aid worker told me that he already had four different carers who cooked, cleaned and washed for him.1 During my entire fieldwork period Martin lived in the ‘protection house’, as it was called by inhabitants and aid workers alike. From inside the compound one could see through the fence to the AHM offices. This proximity allowed Martin to have frequent exchanges with several aid workers: sometimes I would find him chatting with them in front of their office, an aid worker would bring him his food rations and give him a coin or two, or the medical doctor would visit him to inform him about his medication. His most important contact seemed to be a senior officer in the UNHCR. Martin often referred to her mediations to explain progress when his medicine was delivered, his transport to Kampala organized, or his resettlement files advanced further through the process. He eventually even managed to have electricity from the police station installed in his house.
During the course of my research, Martin was referred to Kampala for medical check-ups several times. Like any other refugee who was referred to Kampala for medical purposes from the various settlement locations, he would stay at the Medical House, which was run by an aid organization in Kampala, for days or weeks. In order to visit him there, I first had to be security cleared by the main office of the organization in charge in another part of the city. I soon realized that most of the aid workers in that organization were familiar with Martin’s name too. Although Martin was seated next to a new walking frame still wrapped in plastic where I found him at the Medical House, he still used his old one when we moved into the shade of a tree in the compound for more privacy to talk. Martin moved very slowly, first placing the walker an inch in front of him, before following along step by step.
Martin told me about his challenges with the food in that place. He was supposed to take his medicine with food, and there were certain kinds of food he was meant to avoid for his health, such as salt and oil, but the Medical House’s kitchen used those in their meals. He emphasized: “I have the paper, the recommendation from the doctors. If you just say this as a recommendation without a paper, they cannot accept it, but for me I have the paper from
Another time when I visited Martin back in Kyangwali, he was reading in front of his room at the protection house. He turned down his radio’s volume and put his special reading glasses on an empty chair next to a pot of greens and a flask. Martin’s physical condition had visibly improved since the last time I saw him at the Medical House in Kampala. His words were clearer, and he was able to read much more again. He gave me a book and guided me to find the page where he was shown in a photo. A section of this book profiled him as a representative of a human rights organization in Congo. In his black briefcase next to his chair he carried a letter from this and other organizations, including the Refugee Law Project that was affiliated to Makerere University, and a Swiss organization I had not heard of before. These organizations would help him leave the country due to his medical conditions and protection issues, he explained. Martin used to work as a human rights activist and lawyer, and his knowledge clearly helped him with his own case. He commented: “I know very many articles, I cannot mention all of them to you. The human rights, the UNHCR ones, I know the articles, I know my rights. It is my right not to stay like this! … The UNHCR has to help me and support me with eating, housing, everything. I want good treatment and good protection”.
When Martin’s health had improved significantly, the authorities planned to move him out of the protection house. For this purpose they had built him one of the houses for PSNs like they had for Jacob (case 4). During my last visit to Kyangwali in early 2017, Martin was waiting for his bed for the new house to be finished, which was also a service provided by the UNHCR. As it was my final visit, Martin asked me what I had taken him as a farewell gift. As I did not have anything to hand, I helplessly said, “memories”. But, as he understood that to mean a memory card for his phone, I agreed to take him one the next day. When we left, a friend who had accompanied me joked indignantly about Martin’s boldness. He admired his cleverness and imagined that at some point he would be demanding a cooker and a fridge for his new place from the aid agencies.
2 Case 10: Bernadette
The market, bullets and prayers
Bernadette had just returned from church and was sitting on a small wooden seat next to the cooking zone, where she was preparing mboga, cassava leaves, that filled the hut with an aromatic flavour. Due to the heavy rain we had
Despite the pain she often experienced, Bernadette was always busy and found it difficult to refrain from any kind of work. Her house was located right beside Kyangwali’s biggest weekly market, and Bernadette made the most of this location. She rented the space in front of her house to friends selling handmade chairs or kitenge cloth. Her house, and especially her compound, served as a place where people stored their goods or poles and plastic sheets to erect their market stalls. On those market days Bernadette usually sat in front of her house and collected notes and coins from both Ugandans and refugees, handing out the key to the compound which she always tied around her crutch. As well as her customers, other visitors also frequented Bernadette’s home. Some dropped in to rest a while and chat, others to rearrange their goods, or to leave a baby behind to sleep for a while. Many people called her shanga, or shangazi, the Swahili word for ‘aunt’, which Bernadette explained was an expression of their good relationship with her. Before visitors, myself included, left her home in the evening, she prayed for and with them – a practice she also engaged in when someone she knew lay ill at home or in hospital.
Although Bernadette had arrived in Kyangwali on her own, over time she had found more and more people she had familial ties with, and she introduced people we met in the market or on the village street as a distant uncle, a cousin or a sister-in-law. The most surprising and incredible incident for Bernadette, however, was when she met Priscilla, her brother’s daughter, who only lived a village away in Kyangwali. Bernadette used to take care of her like her own daughter after the girl’s mother had died. Bernadette explained that many families had already been torn apart and scattered across Congo during the long years of conflict. While many people had fled the country, Bernadette had stayed with her family, not willing to leave: “We could move somewhere very
During one of the market days, after a torrential downpour had interrupted the traders’ activities, I took shelter in Bernadette’s home along with Camille (case 6). The house was squeezed full of people sitting and standing in the dark room, waiting for the rain to stop. Among them I recognized Claire (case 7), and Bernadette told me that they knew each other from the meetings that were organized by Aid Global. Although Bernadette was very critical of, and eventually disappointed by Aid Global’s services, she emphasized that the organization had united people with disabilities and encouraged them to be more self-confident about their abilities: “They [Aid Global] are the ones that brought us together, they really assisted us so much. They talked to us about being disabled. They said we should not break down because we are disabled, being disabled is not a crime. You can be disabled and still be intelligent!” Bernadette had been in much better health when she arrived in Kyangwali, being able to walk longer distances and do more heavy work. However, one day in Kyangwali she was attacked by a cow and injured again, and since then her physical condition had worsened and she started to feel a lot of pain in her back and her leg. She was taken to Mulago Hospital in Kampala where she was issued with a report that stressed the necessity of treatment abroad.
Bernadette often told me how difficult it was to obtain the medicine she had been prescribed in Kyangwali. As medication was frequently not available in the health centres and was too expensive to buy in the privately-owned pharmacies compared to her home country, she sometimes tried to arrange medicine with travellers between Congo and Uganda. Bernadette believed that she could heal with proper medication, and this is why she put so much effort into her resettlement case. She retrospectively argued: “This stick is what made me be accepted [for resettlement], but they had first also refused, because I came after them [other refugees]. I made a strong follow up until I got it … I do not know how life in America is. For me, in my mind, I think when I reach America, maybe they will treat me and I will be fine like the others are”.
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Martin and Bernadette’s stories charted changes to their bodies over time. These changes had come along with diminishing abilities to carry out certain
This chapter sets out from the starting point that the disabled body can be both a challenge and an opportunity for someone living in a refugee settlement. It thus examines in which ways disability is practiced and experienced as a category of difference, that is, in opposition to concepts of normalcy. The way in which disability figures as a category between difference and normalcy is decisive for how core problems around disability are understood, and subsequently approached by service providers. The service providers’ approaches in Kyangwali were not clear-cut in this regard. As outlined in this book’s introduction, both the medical and social models of disability played a role in Kyangwali. While disability was actually handled from quite a medical viewpoint in how it was defined, assessed, claimed and evidenced, a rights-based approach that promoted the social model of disability was gaining more and more importance. In this chapter I will look at the consequences that both these approaches were bringing about for my interlocutors.
First, I will explore the UNHCR’s official definition of disability. As a category within the PSN framework, disability was mainly understood from a medical standpoint. The importance of medical standards also came to the fore in how disability was assessed in Kyangwali. Who counted as disabled or not was, however, not a clear-cut issue. I demonstrate this by showing how the aid agencies’ available resources and a politics of numbers also shaped categorical definitions.
The second section of this chapter looks at disability as a category of difference from the perspective of people with disabilities. In their claims for support, but also in their experiences of acquiring a disability at a certain point in their lives, people with disabilities often dissociated themselves from watu wazima, an expression which literally means ‘whole people’. I will take into account how my interlocutors made claims via bodily difference, and show how the need for medical proof often led to disappointment when service delivery did not fit medical requirements that resulted from medical examinations. The section also considers in which ways bodily difference was entangled with personhood. Taking into account Livingston’s concept of “building”
Yet, disability held a particular place in the institutional and economic setting of the refugee settlement, precisely because it could enable access to resources, which were important for ‘building’ projects and relationships with others. The third section of this chapter focuses on the promotion of a rights-based approach and the social model of disability, investigating the critical consequences this had for disabled people’s attainment of personhood through ‘building’ relationships and opportunities in the refugee settlement. I argue that the turn towards this approach only created limited opportunities for equality, and instead produced the risk of perpetuating the unequal relations between service providers and people with disabilities.
3 The Definition of Disability as a Boundary Device
Ever since my first visit to Kyangwali I had tried to obtain the official number of people with disabilities in the refugee settlement, and this became a never-ending exercise. When I inquired at one aid agency’s office for any kind of statistics, they referred me to the next one, whose employees sent me further on or back again. Aid workers informed me that their numbers were not up to date, or explained that the numbers from the last assessments had not yet been compiled. My emails to the higher managers within the aid agencies were unanswered or deferred via friendly replies. I was taken aback that I could not get hold of this data, as I knew that people with disabilities were registered as such in a central database as soon as they arrived at the Ugandan border’s transit centres or the refugee settlement2 and that, for instance, AHM’s community social workers kept lists of all the ‘vulnerable’ people in their villages.
When I gradually gained access to the numbers, they diverged immensely. According to a January 2014 joint assessment from the UNHCR, the AHM and the NRR, 124 people with disabilities lived in Kyangwali.3 A first ‘rapid assessment’ by Aid Global in Kyangwali in early 2014 listed 574,4 while their promotional
The definition of disability, as Stone (1986) argues in her work on the welfare state, marks the boundary between the ‘normal’ state of accessing resources through work, and the special status of receiving social assistance. As the category works as a boundary device, its definition is of utmost importance: in comparison to other categories that entitle people to social assistance, such as old age or widowhood, it is much more difficult to determine eligibility for support based on someone’s ability to work through their bodily state (see also Kelly 2017, 110). Stone argues that it was because of a need to use the most objective criteria possible that medical diagnosis and certification became so crucial for the definition of disability (Stone 1986, 3).
Physical disability – moderate (DS-PM): Person who has a physical disability from birth or resulting from illness, injury, trauma or old age, which does not significantly limit the ability to function independently. This category may include mine victims and persons who lost fingers or limbs, which may be corrected with a prosthetic device.
Physical disability – severe (DS-PS): Person who has a physical disability from birth or resulting from illness, injury, trauma or old age, which severely restricts movement, significantly limits the ability to function independently or pursue an occupation, and/or requires assistance from a caregiver.9
As Smith-Khan et al. (2014) observed, this definition clearly starts from the bodily impairment as the cause of the disability, assuming that it is this dysfunction of the body that needs to be addressed in order for a person to “function independently”. Rather than viewing it as a result of the interaction between bodily, social and environmental factors, this definition of disability locates inability within the individual body, that “may be corrected”. The idea of “functioning independently” in this UNHCR definition is the criteria which is used to objectively measure disability. The definition of disability within the Guidance for the Use of Standardized Specific Needs Codes includes the following note: “Assessments of the patient to define whether the condition is moderate or severe would require a specialist/qualified personnel”.10 No clearer definition of “specialist/qualified personnel” is provided, but aid workers with whom I discussed this definitional requirement confirmed that this included medically-trained staff.
This was evident in how PSN assessments were made. I once observed a ‘Vulnerability Assessment and Verification’ exercise in Kyangwali. On the veranda of one of the aid agencies’ offices, aid workers had to use a ‘Vulnerability Assessment Tool’ to decide whether a person counted as a ‘person with specific needs’ or not and, if so, which sub-category they belonged to. Applicants approached the tables with their documents ready: as well as their attestation cards they carried reports from doctors and Uganda’s Ministry of Health, or exercise books with written diagnoses from local health centres. If people could not show the necessary medical attestations for the problem they claimed to have, they were refused the right to be considered in the PSN category, or were sent away with the instruction to see a doctor who would determine their grade of impairment. Thus, even though the UNHCR acknowledged the UNCRPD’s definition of disability, its defining criteria and practice of assessing disability clearly pointed to a primarily medical understanding of it.
For the aid agencies in Kyangwali who aimed to distribute scarce resources in a fair and systematic way, this medical definition of disability as a boundary device upon which decisions for deservingness were made played a crucial
The organization measured its project’s success by counting the number of people that took part in their workshops or needs assessments, as well as those that benefitted from the accessible infrastructure and assistive devices it provided (see Chapter 3). The fact that aid agencies can report a large number of beneficiaries proves the relevance of their projects and facilitates access to financial resources (see also Swidler 2009, 204). Just as Smith (2004) proposes that ‘having people’ as dependents within patron-client relations enables access to opportunities and resources, ‘having people’ with disabilities in a refugee settlement seemed to become especially rewarding for allowing aid agencies to obtain funding to implement their projects, due to the assumed ‘double vulnerability’ of these beneficiaries.
The UNHCR decided which aid organization it would fund to undertake certain domains of their protection mandate. The various NGOs that were appointed to deliver medical services, community services or food provision in the refugee settlements counted as the UNHCR’s implementing partners. At the time of my fieldwork, Aid Global had not yet obtained any funding from the UNHCR to implement their projects, so were aiming to become an implementing partner in the future. Their expertise on the topic of disability meant that they were very likely to achieve this aim, since the UNHCR was not well versed in the topic, and pressure to give disability more attention was growing rapidly, through both research and advocacy on disability in the humanitarian context.
This shows how institutions adopt diverging definitions of disability according to their respective remits and missions (see also Ginsburg and Rapp 2013). The definition of disability as a boundary device thus has a different function, depending on the situation for which numbers are required. For organizations in the settlement that were delivering aid to disabled people on
4 Disabled, Not Whole: On Claim-Making and Personhood
One day when I was talking to Daniel, who was unable to walk and in great pain since a motorcycle accident, he recounted how he had gone to the agencies’ offices and asked to be added to the list of EVIs: “I said ‘you can’t chase me [away from the office], I am disabled, and not whole’”. Daniel spoke very fast when he told me this story, but articulated his words very clearly when he said, “I am disabled, and not whole”. A disabled person asserting themselves to be “not whole” in the camp could mean many things. The term watu wazima was used to refer to ‘normal’ or ‘able-bodied’ people, and my research assistants mostly translated it as such. Yet, the term was also used to mean ‘adults’. Hence, people were not only using it with regard to their bodily capacities, but the equation of watu wazima with adults suggested it was also about responsibilities, roles, and social capacities. Starting from these different distinctions of ‘being whole’, I will explore bodily difference in relation to both claim-making and personhood.
In Chapter 3 I described ‘comparative benefits’ – how people with disabilities perceived themselves as being entitled to claim benefits through comparisons with others. They contrasted their own circumstances with what they saw other disabled people receiving, but they also made comparisons with able-bodied people in their claims of being dependent, unable and in need of support. Given the status of a ‘double vulnerability’, it was not surprising that disabled people particularly claimed entitlements via bodily comparisons. This section focuses on claim-making via the body in terms of proof, to ascertain the consequences the medical model of disability had for my interlocutors in this regard.
Since a disabled body could provide opportunities to access resources and services, problems of proof and deception became critical. Stone argues that
Martin relied on these medical examinations and documents to be recognized as in need of support. Based on medical assessments, doctors made recommendations for his specific treatments such as medication and food. While these recommendations increased Martin’s expectations and hopes, they turned out to be rather empty bureaucratic procedures for him. His medical reports advised him to stick to a special diet, but the food he received in the Medical House and from the aid organizations in Kyangwali did not support this requirement. Similarly, Bernadette was frequently unable to access the treatment she needed at Kyangwali’s NGO-led health centres, so she tried to acquire it more cheaply through intermediaries in Congo. Thus, whereas my interlocutors relied on medical proof to acquire their disability status, the situation of service delivery in Kyangwali often did not fit with the medical requirements that had been revealed through medical examinations.
You find for sure we, the disabled here in Kyangwali, we have no value at all. I can give myself as an example: when this crutch is spoilt, you cannot reach community service. And then they tell you “wait, wait, we shall first have to hold a meeting with the UNHCR, that is when you will get a crutch”. I don’t know whether they know that this is the leg of a disabled person.
The somewhat paradoxical outcomes between the need for proof and what was eventually provided became especially obvious in the case of resettlement. Martin showed me a letter from a doctor recommending that he should be medically treated abroad several times. This stated that the medicine available in Uganda was not ideal, and advised medical treatment in a European country. Martin placed a lot of hope on being resettled in a third country, as he expected that better treatment would help him regain his former strength and abilities. Martin constantly discussed his chances of resettlement due to medical reasons with different aid workers. He told me: “They promised me, and said to keep waiting. They said, ‘you be patient’. I am patient! But to be patient, I need to have the medicine!” The possibility of resettlement made disabled people invest in acquiring the necessary documents and proof of their need for further treatment abroad. As in Bernadette’s case, sometimes people were actually successful (see Chapter 7).
Yet, although the medicalization of disability in assessments and verifications emphasized people’s need in medical terms, the service delivery was often not forthcoming as recommended by doctors and thus expected by my interlocutors. Disabled people claimed their bodily difference along this medical understanding, so were disappointed when the aid agencies did not support them enough with medical treatment and assistive devices to make their bodies ‘whole’.
The ways that the expression watu wazima was juxtaposed in opposition to disability implied that disability denoted an idea of loss or lack. Coming back to watu wazima as an expression for adults, and considering a common perception that children are not yet ‘whole people’, disability seemed to be viewed as a state of personhood that signified some deficit (see also Zoanni 2018).11 It is interesting to note that other Swahili words describing people
I think all societies, be they “western” or “eastern” or “southern”, have a concept of the physically and mentally normal and a normative view of themselves (and their past) which people draw on to understand bodily difference. But in many societies where health and physicality are located and defined within social (particularly kin-based) relationships, notions of “normal” bodies and “normal” relationships are two sides of the same coin.
2005, 10
It is important to consider how my interlocutors perceived themselves and their disabled bodies as being positioned within social relations and in regard to other bodies. When I talked to Patrick, he asserted: “The way of our life here in the camp, we have no way to support ourselves like able-bodied people”. Claire (case 7) expressed worries about her relationship with her husband when she said: “He is also a human being, tomorrow he will get tired and throw me there! But they are just giving help to people who are normal. Those things annoy me very much”.12 The crux of these bodily comparisons seemed to be the way that being able to support yourself and your family was viewed as a crucial aspect of attaining personhood. Consider Claire’s statement about livelihood support for ‘vulnerable’ people: “The goats were given to women who are strong. The woman has a disabled child, but two hands and two legs and she is well – this is the one who received a goat. We, the disabled people in
Those wakubwa [Swahili for ‘leaders’] do not differentiate between the people with strength and ability and those who are weak and disabled. They say all the ‘vulnerables’ are entitled to help and support. Most times in the meetings they tell us that these people may be suffering from chest problems, asthma or other diseases, which make them fall under the ‘vulnerables’. Yet when you see them, you will realize that they are very normal. They even walk upright normally. What surprises us is that these are the people who receive the best of the distribution.
Claire seemed to define normalcy in certain bodily terms which were linked to appearance and visibility. Meanwhile, she understood the notion of personhood less in physical terms, but in social terms of successfully providing for a family or being a responsible adult. Therefore, despite this bodily association between disability and normalcy, being without a ‘whole body’ did not necessarily mean a lack in personhood, given that one is able to ‘build’ families. ‘Building’ suggests a concept of personhood that is processual and relational, “more than it does a sense of idealized body types or capacities” (Livingston 2005, 10; see also Ingstad and Whyte 1995, 11). Tyler Zoanni characterizes this state of personhood as “forward going” or “becoming”, something that an individual gradually attains during their life (Zoanni 2018, 67; see also Comaroff and Comaroff 2001, 271).
In this sense, some of my interlocutors experienced not having a ‘whole body’ as a difficult situation. Like Martin and Bernadette, those who had acquired their disability at a later stage in life often compared their current situation of going about daily tasks remorsefully against the bodily capacities and energy they used to have. They seemed to experience a rupture in their processes of continually becoming ‘whole people’. Claire shared her thoughts on this: “I always say, maybe at least if I was born like this, maybe I would not have any thoughts. But things came when I was normal, when I had produced three children, that is when the accident came like this”.
Considering these and other comparisons people made with ‘whole people’, bodily difference presented a challenge for their personhood, because they faced difficulties in ‘building’ families and other projects. However,
5 Contested Recognition in a Rights-Based Approach
When Bernadette referred to Aid Global as the organization that had “brought them together”, she was speaking about “the disabled” as a group she belonged to. In many instances my interlocutors talked about their own experiences as an example of what other people with disabilities were also going through. “Us, people with disabilities are suffering a lot because of …”, or “we, the disabled here in Kyangwali …” were sentences I frequently came across. These expressions could constitute a way of claiming recognition, both as a group and as individuals, they could express personal connections amongst each other, or they could possibly imply identification with a person’s own body.
As outlined in this book’s introduction, the social model approach to disability is closely entangled with a rights-based focus – both of which were particularly pronounced in Aid Global’s project. In order to raise awareness and fight negative attitudes around disability, this organization had founded a drama group. One day I observed one of the drama group’s rehearsals in a youth centre’s green compound in Kyangwali. Vitali (case 5), the group’s chairman, announced that the purpose of the meeting was to prepare for the upcoming visit of a donor delegation from Finland. Under the guidance of a community mobilizer, the group decided to perform some scenes depicting how much Aid Global supported them. In one of these, Claire (case 7) acted out a situation in which she was fetching water from a borehole by herself. However, some children disturbed her in the process, snatching her crutch and teasing her with it. Another scene showed parents hiding their disabled child when aid workers visited for an assessment. The child ran after the aid workers, but it took a while for the parents to stop denying their child was disabled. When the child enrolled in a special school for disabled pupils, the parents were happy, especially as they did not have to pay the school’s fees. These and
Although Aid Global’s one-year project in Kyangwali came to an end at the beginning of my fieldwork, it was often a topic of discussion in conversations with disabled people. Their contact with the project had only recently ended, and some activities were still ongoing, like the drama group’s activities for donor visits and certain festivities. In order to reveal what was at the core of expressions such as ‘us, the disabled’, I explore how a rights-based approach to disability was implemented in Kyangwali, and examine some of its contested configurations.
Most of my interlocutors appreciated Aid Global’s attention and support, and the fact that they had been recognized by an organization that specifically addressed disability. For instance, looking back at the project, Mugenzi said: “It was a good experience since before other people attended seminars and training, but people with disabilities would stay alone. But now we have started to join others and also attend training sessions”. As well as the drama group, Aid Global had organized workshops in which they trained disabled people in matters of hygiene and sensitized them about their rights, but also asked them about their needs and what kind of support would help them most. Bernadette remembered being told in a meeting that disability was not a bad thing and that disabled people were capable and intelligent. Camille (case 6) explained in regard to the drama group: “It helps me, because of the things we act, they teach me and make me feel better”. Remember that Camille had lost her arm in an incident where she was imprisoned with others in a hut which was set on fire by armed men. I once saw her act out a similar scene in one of the drama group rehearsals. Depending on people’s attitudes towards their own disability, which often correlated with the time and circumstances they had acquired it, people seemed to find comfort and confidence through such activities.
Aid Global’s training and workshops were also of varying significance depending on the position someone held within the project and the responsibilities and opportunities that came with that. Claire (case 7), for example, became a community facilitator: “When Aid Global reached here, they gave me the feeling of discovering that I was also as important as other people. They took me to a workshop for one week. They taught us how we can manage our lives with our children”. Claire went on to recite what she had learnt about hygiene, for example, how to keep cooking utensils free from germs, how to store water, that it was important to use soap when washing hands after going to the toilet, and to advise her children about it. She also recounted that she was used as an example to show disabled as well as able-bodied people that people with disabilities are not incapable, but can do things for themselves and their families.
This revealed that the 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 had 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. I realized that, instead, participating in such events provided first and foremost opportunities for distributive labour and access to material benefits. As Chapter 5 discussed, it was less the content of Aid Global’s meetings, but rather their format and organization that made my interlocutors feel recognized. Claire compared Aid Global’s meetings to what she had experienced from other organizations: “When AHM used to call us for meetings, in those meetings we would spend the whole day without even drinking water given to us. But in Aid Global’s meetings – why we say it pleased us so much – we would take a tea break and we would also eat and everything would be good”.
Certain such events were, however, despised by other interlocutors. Mugenzi, the man who had both legs amputated, complained about the activities on World Refugee Day, an annual celebration that included representatives from
Ferguson cautions us that neoliberal “rights talk” does not really contain claims to a “rightful share” of the resources held by states and other institutions (2015, 48). As he notes for poor people in South Africa, people with disabilities in Kyangwali did not stake distributive claims in reference to equality and rights (49). They understood their entitlement and the validity of their claims based on their hierarchical relationship to the aid agencies and their position as eligible dependents within that, as well as according to the distributive labour they continuously invested into those relations. Yet, while disabled people’s complaints could certainly be understood as claims towards more equality, the aid agencies seemed to dismiss these as high demands located in the ‘dependency syndrome’. Aid Global’s brochure remarked on the limitations of their project, stating that it “could not meet the high expectations on the side of the beneficiaries”.13 This is precisely one of the dangers of a rights-based approach – the risk that it might undermine any chance of redistributing wealth and resources. Rather than merely being officially acknowledged as an equal rights-holder, it is the recognition of demands such as being supported with children’s school fees or with a house that would make a genuine difference to the disabled refugees’ lives (see also Ferguson 2015, 48).14
The approach of sensitizing people about their rights was in line with current development trends and disability discourses, and thus served as a form of proof that people with disabilities were being cared for accordingly by the aid agency. In this way, Aid Global positioned itself as a role model taking a progressive way forward that focused on disabled people’s equality and independence. The recognition of disabled refugees within this framework of universal rights thus featured as a marker of progress and modernity, which sometimes seemed to be more relevant and useful for the aid organizations
The project which Aid Global proposed to the UNHCR in April 2016 was to be implemented in another of Uganda’s refugee settlements with a budget of 2,000,000 US dollars for five years, and aimed to improve “the well-being of people with disabilities through equity and inclusion interventions”.15 As well as improving access to WASH services (as described in Chapter 4), the proposed activities included community awareness workshops, quarterly advocacy meetings, an annual conference on equality and inclusion, media campaigns, policy briefs, and the formation of drama groups. The only aspect that covered direct assistance in the form of inclusive boreholes and toilets comprised around 10 percent of the total budget.16 This revealed a major discrepancy. Whereas promoting the rights-based approach made funds flow for the aid agency, the outputs for disabled people were sensitization training and rights advocacy. Claire (case 7) told me about one of Aid Global’s workshops, in which disabled people were told “if you are disabled and you have wisdom in your eyes, you can do work and your child can get soap and food”. This shows how the aid agencies seemed to think it was more important to teach people to become empowered than to give them tangible items to directly benefit their everyday lives. 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 in any way, is what I call ‘disappointed recognition’.
6 Contested Relations through a Rights-Based Approach
Martin (case 9) and Jacob (case 4) were the only people with disabilities I met in Kyangwali who explicitly referred to rights in their claims for support and protection. They were clearly an exception in this regard. Martin’s
In her discussion of ‘biological citizenship’ after Chernobyl, Petryna (2013) describes precisely this – the fact that people negotiate benefits and entitlement not just based on their physical condition, but also on the basis of their personal relationships. I also noticed that in other cases it was a personal relationship with someone in a higher position within the aid system – be it a high-profile foreign officer, a Ugandan aid worker, or a community social worker – who eventually made things happen and facilitated help to be forthcoming. Such often hierarchical relationships, which disabled people invested a lot of effort into, were at times very relevant in addition to their medical diagnoses, having a certain categorical status, or being a formal ‘rights-holder’.
For example, this played a role at the Word Refugee Day event alluded to above. The speech in which disabled people made their claims known was given by a young boy and was explicitly addressed to the guest of honour and the UNHCR Uganda country representative. The speech seemed to have an impressive impact on the high-profile visitors. They posed for pictures with the group, photographed by the media people, or with their smartphones. Eventually, the guest of honour announced that she would donate a bicycle to the young boy who had given the speech. He had difficulties walking due to a debilitated limb, and the bicycle would considerably ease his everyday journey to the secondary school he attended. What I found particularly interesting about this example was that the ‘rights talk’ raised in his speech was somewhat at odds with the ways assistance was subsequently provided, in an act that was rather reminiscent of a hierarchical relation to a patron and a charitable act, instead of being based in ideas of equality.
We acted several times [with the drama group] and pictures were taken, we attended their seminars. But at the end, we did not get anything out of it. People from Finland came, one man and two ladies. They saw our drama performances and left. Another time, two other ladies came with two gentlemen, one of the gentlemen knew Swahili. Those ladies interviewed me and asked me what I would like to be helped with. I told them that if they were to send their help to me here in the camp, I wouldn’t get it. That if they were to help me, let them take me to Europe with my sons … They recorded everything and took my pictures. Later on, two other white men came, they took me to the water tap and interviewed me about how I fetch water and they brought me a gift from Finland in this envelope. They told me to keep those papers. I don’t know whether they [the papers] will take us to Europe.
I don’t look at it in a bad way, when a person asks about my problems and takes pictures. I don’t feel bad at all. Whether they go to sell those pictures, I don’t know. Let me tell you, these people from Finland took many pictures. But still now I don’t know what was the meaning of it all, whether the support will come. If a person wants to know [about me] I can’t refuse him or her. They interview me.
Vitali told me all this while I was interviewing him. I felt uncomfortable in the situation but, over the course of my fieldwork, I gradually learnt how to deal with the ways in which I was also becoming part of people’s distributive labour (see Schuler 2018). When Vitali rehearsed and performed for donor delegations in the drama group, when he had his picture taken, or when he was interviewed about his needs, he was certainly hoping for a share of the aid agency’s resources. This should not be altogether surprising, as Vitali featured prominently in both Aid Global’s brochure and their promotional video, which seemed to have had a positive impact on the organization’s future prospects.
Such international relations turned out to be more advantageous in other cases. It was common for people who had resettled in the US from Kyangwali to send money to people they had left behind, even if they were not family. When Claire and her family reached New York through the resettlement programme, they sent six disabled people in Kyangwali, including Martin and Vitali, 10,000 Ugandan shillings17 as a Christmas present. Through Aid Global’s activities, my interlocutors had developed friendships with each other. I mentioned earlier how, when I was with Camille and Claire in Bernadette’s hut during the heavy rain on a market day, Bernadette had told me that disabled people knew each other from Aid Global’s activities. I had grown to know Camille when she was served mboga at Claire’s place before one of the disability association’s drama group’s rehearsals which they both were participating in. It became customary for Camille to drop into Claire’s place for a cup of porridge or the like when she was in the settlement’s centre. Vitali also visited other disabled people, for example to show them photographs from the drama group’s rehearsal. Some of these relationships became rewarding for my interlocutors. Refugees who were lucky enough to reach the US or another European country seemed to act upon a moral obligation to share some part of their new wealth with the ones left behind, even if it was a rather symbolic amount of money.
Whyte (2020) looked at disability programmes in a rural area of Eastern Uganda which only briefly touched disabled people’s lives, and observed that disabled people’s sporadic positioning as beneficiaries contrasts significantly with the durable interactions people have with their families and neighbours. This also held true for people in Kyangwali, but it is important to consider that they had often lost family members, so were more reliant on alternative support, while the aid agencies provided crucial possibilities of assistance on a regular basis. Although people with disabilities frequently did not receive what they had hoped for from Aid Global and other organizations, they kept trying. This signifies “hopes for durability” (2020, 136), as Whyte describes the situation when people orient themselves towards projects “in a subjunctive mode of hope and doubt” (135).
My interlocutors kept on hoping for a longer-lasting relationship with Aid Global even after the project had ended. Claire explained: “They [Aid Global]
7 Conclusion
This chapter has explored how people with disabilities in Kyangwali were approached through both medical and social models of disability. In different situations, such as during assessments for PSN status or assistive devices, in workshops, or during World Refugee Day celebrations, various concepts of disability were put forward by different organizations, with diverse and far-reaching consequences for disabled people.
The UNHCR’s written definition of disability is anchored in an idea of bodily functioning and independence, and this predominantly medical understanding also played a role when disability was being assessed practically. This chapter has revealed, however, that aid organizations’ funding and programmes also shaped the definition of disability, when it was viewed as a boundary-setting device. Just as a disabled body could provide opportunities, disability was closely bound to the concept of deception, which required people to render their disabilities visible, often accompanied by medical proof. These processes and procedures emphasized need in medical terms, but the responses to this need were frequently not forthcoming as expected.
By exploring what it meant for disabled people in the refugee camp to become ‘whole’ as people, this chapter has demonstrated that what constituted personhood was defined less in bodily terms, but rather in the social terms of successfully providing for a family and being a responsible adult. This led to the question of how the aid agencies’ approaches supported disabled people in their efforts to attain personhood. This chapter has argued that the shift towards a rights-based approach ran the risk of increasing the unequal
Anthropologists who have considered the role of the body within humanitarianism in other contexts warn of the depoliticization that often accompanies the medicalization of bodily statuses (Fassin 2001, 2012; Fassin and D’Halluin 2005; Malkki 1996; Ticktin 2011a, 2014). They assert that such processes are about a shift “towards a politics of the body as opposed to one of social justice or redistribution” (Ticktin 2014, 255). At first glance, the humanitarian turn towards a rights-based approach to disability appeared to be heading in the direction of social justice, as a result of the UNCRPD’s increasing influence in this context. Yet, my fieldwork observed that the focus on rights as it was practiced in Kyangwali actually undermined redistribution, when it only allowed disabled people to claim their rights, and not any tangible items. This chapter cautions that, as long as the services based on rights are not improved, and as long as the aid organizations seem to profit more by ‘having people’ with disabilities than actually enabling people in their pursuit of personhood through ‘building’ families and projects, there is a need to continue critically questioning a rights-based approach in this context.
Some problems in retrieving numbers from the database certainly occurred during the transition period when the OPM started to use their own database, RIMS, in early 2015.
Oral information from an AHM aid worker in April 2014.
Oral information from an Aid Global aid worker in April 2014.
Aid Global, promotional video, 2015.
UNHCR, PSN statistics, received by email in February 2016 from a UNHCR aid worker.
Aid Global, online news article on ‘Inclusive WASH’ project in Kyangwali, April 2015.
Guidance for the Use of Standardized Specific Needs Codes, document received from a UNHCR representative in July 2015, page 5.
Guidance for the Use of Standardized Specific Needs Codes, 5.
Guidance for the Use of Standardized Specific Needs Codes, 5.
Referring to concepts of African personhood that were discussed by Meyer Fortes among the Tallensi people in Ghana, Tyler Zoanni takes up descriptions of children and mentally disabled people as having ‘marginal personhood’, as they lack yam (thought, judgement, sense of reality, reason) (2018, 309). Zoanni starts from the proposition that, while children usually overcome the marginality of their personhood when growing up, mentally disabled people might permanently not acquire full personhood in the sense of yam (2018, 64).
It depended on the translator what word they used for watu wazima. In the first case the word was translated as ‘able-bodied’, in the second case as ‘normal’.
Aid Global, project brochure, 2015.
I discussed in Chapter 5 how direct material and financial assistance made a difference to my interlocutors’ lives.
Aid Global, project proposal UNHCR, received by an Aid Global aid worker in April 2016, p. 1.
Aid Global, project proposal UNHCR, p. 8.
Approximately 2.5 US dollars.