Disability and Aid

Front matter

AFRICA-EUROPE GROUP FOR INTERDISCIPLINARY STUDIES

DISABILITY AND AID An Ethnography of

Logics and Practices of Distribution in a Ugandan Refugee Camp

Contents

-_

Preface 1x

Acknowledgements x

PART 1 Case 1: Mansanga 35

Case 2: Rafael 37

Vague Rationales of Food Aid for Disabled People 41 “The Food is Not Enough” 44

Special Food Aid: Not Enough for a Child’s School Fees 49 Food Aid asa Contribution 51

Case 3: Muriel 56

Case 4:Jacob 58

Dynamics of Donations 62

Comparative Benefits: Sense of Entitlement and Claim-Making Disappointed Recognition: “Just Writing, Nothing Else” 68 Mistrust and the ‘Good’ Beneficiary 71

VI CONTENTS PART 2

4 Care for “People Who Cannot Help Themselves” 81 1 Case5:Vitali 81 2 Case6:Camille 83 3 The Desired Ideal of Community Support 88 4 The Contested Ideal of an Independent Self 93 5 The Importance of Connectedness: “Checking on Someone” 95 6 Reconfigurations of Care 98 7 Conclusion 102

1 Case7:Claire 104

2 Case 8:Ignatius 107

3 Bridging the Gap: Skilling People with Disabilities a2

4 The Essence of Aid Projects: “You Can Only Remember What You are Given” 14 Tensions between Vulnerability and Self-Reliance 121

Ol

6 Dimensions of ‘Self-Reliance’ in a Refugee Camp 123 7 Conclusion 127

Part 3

6 Disability as a Category of Difference 131 1 Caseg: Martin 131 2 Case1o:Bernadette 133 3 The Definition of Disability as a Boundary Device 137 4 Disabled, Not Whole: On Claim-Making and Personhood 141 5 Contested Recognition in a Rights-Based Approach 146 6 Contested Relations through a Rights-Based Approach 150 7 Conclusion 154

7 When the Heart Does Not Settle — Life in Transit 156 Case u: Anette 156

Case 12: Mugenzi 158

The Home That Was 163

“A Life of Suffering”: Rather Here than There 167 What the Future Has to Offer 170 nu pw DN KF

CONTENTS

1 The Ambivalent Role of Humanitarian Aid 180 Ignored and Overlooked Dependencies 181 Enabled through Aid, Rather than Dependent 183 Disappointed Recognition 186 Towards a Post-Rights Approach to Dependency 188 ao pp wo bd

Bibliography 193 Index 211

Preface

In 2010, Gitte Beckmann, Mareile Flitsch, Herbert Muyinda and David Kyaddondo from Makerere University in Kampala, Uganda, initiated the Disability and Technology research project, a long-term interdisciplinary cooperation between the Ethnographic Museum of the University of Zurich and the Child Health and Development Centre at Makerere University in Kampala. I count myself lucky that I had the chance to produce this book within the framework of the research project. Our research project had an applied component, which allowed me to stay in Uganda for two years — not only for research and scientific exchange, but also as part of several teaching and knowledge transfer events. The book is the result of a PhD study I pursued with funding from the Swiss National Science Foundation (sNsF) within the Disability and Technology research project, as well as through a one-year scholarship at the University of Copenhagen’s Anthropology Department. The thesis was supervised by Mareile Flitsch at the University of Zurich and Susan Reynolds Whyte of the University of Copenhagen, and was awarded the 2019 Research Prize for excellence in policy relevant research on developing countries by the German Association’s Research Group on Development Economics, and the 2020 Mercator Awards from the University of Zurich in the ‘humanities and social sciences’ category.

Acknowledgements

First of all I would like to express my thanks to Gitte Beckmann. Together with Mareile Flitsch, Herbert Muyinda and David Kyaddondo, she initiated the Disability and Technology research project and coordinated long-term cooperation between the Ethnographic Museum of the University of Zurich and the Child Health and Development Centre at Makerere University in Kampala, Uganda. I count myself lucky that I had the chance to produce this book within the framework of this research project. Gitte Beckmann not only introduced me to fieldwork in Uganda for my Master’s thesis, but was also a wonderful mentor and friend during my PhD studies, always ready with the best advice at the right moment.

I owe my profound gratitude to my supervisors. Mareile Flitsch had already given me the best possible conditions to pursue this research before the project even began. I am grateful for all the opportunities that enabled me to realize this research, and for her valuable guidance all along. I thank my co-supervisor Susan Reynolds Whyte for the crucial questions she asked and the advice she offered during many conversations, for maybe unconsciously reminding me time and time again how great anthropology is, and for being such a wonderful host, together with Michael Whyte, during my stay at the University of Copenhagen.

Whilst researching I was part of several supportive and academic environments. I thank ISEK, the Social and Cultural Anthropology Department at the University of Zurich, for providing such a great working environment, and for giving me the opportunity to share and gain knowledge by various teaching opportunities throughout my PhD years. Esther Leeman’s dedicated coaching support was especially invaluable. I am grateful to the Department of Anthropology at the University of Copenhagen for hosting me for a full year, during which I advanced my research project immensely. My special thanks goes to the head of the department, Helle Samuelsen, as well as Vicky Antosz for her help with all the paperwork and practicalities in Denmark. I am also thankful to the Child Health and Development Centre at Makerere University for providing me with an academic working environment for two years. I owe my special thanks to Anne Katahoire, director of the centre, and Augustine Mutumba for various administrative support.

In all these academic environments I was surrounded by amazing colleagues, many of whom have commented on drafts, presentations or papers that I have produced during this research project. They also gave me incredible emotional support during hard times, and shared invaluable tips and tricks for mastering a dissertation project. I am glad to have been part of a writing

ACKNOWLEDGEMENTS XI group together with Rehema Bavuma, Lena Kaufmann and Francesca Rickli. Our monthly meetings provided much needed insight and support. I also want to thank a number of wonderful anthropologists who read through parts of my work and were crucial deadline keepers at the final stage of this project: Gitte Beckmann, Angela Birrer, Michele Dick, Molly Fitzgerald, Gabriela Hertig, Clemence Jullien, Daniela Lazoroska, Marc Meyer and Andrea Verdasco. Your feedback was an important source of encouragement at very critical points in time. I also thank Helen Rana for proofreading and editing my book in such a professional way.

During my fieldwork in the Kyangwali refugee settlement I experienced support in various ways. My heartfelt thanks go to Amani Bakunda, who helped me accomplish this research project — not just through his translation services. He helped me by enabling and ensuring access and rapport through his respectful and light-hearted way of interaction, and was a good friend and advisor for important decisions. I also thank Emma Ssempiira, the manager of St. Patricks Guesthouse, for providing me with such a warm home during my fieldwork. I would like to acknowledge Donald Mahanga, who officially taught me Kiswahili but actually tutored me in many other things regarding life in Kyangwali and life more broadly. For the transcription and translation work of my recorded interviews I thank Rehema Bavuma.

The research project was only possible due to generous support from several institutions. I most of all thank the Swiss National Science Foundation (SNSF) for funding my three-year PhD position within the Disability and Technology research project. The SNSF also funded my one-year scholarship at the University of Copenhagen through their doc.mobility programme and the open access publication of this book. North-South Cooperation at The Office of International Relations, as well as the Ethnographic Museum at the University of Zurich funded many further activities that took place around this research project. They supported our research group's regular meetings, as well as a field school in Uganda that I was able to organize along with Raphel Schwere and Francesca Rickli in summer 2017. I am grateful to the students of this field school for their interest in our research field and for co-creating such a friendly atmosphere for knowledge exchange. I also thank the participants in our Stakeholders’ Dialogues on Disability and Research, held in Kampala. The critical and application-oriented inquiries and inputs from representatives of various international and national NGOs and disability organizations, as well as from the government, made me reflect on my research project in important ways.

I am very grateful to the School of Health at the College of Health Sciences, Makerere University, and the Uganda National Council for Science and Technology, for validating my research project and providing me with the necessary

XII ACKNOWLEDGEMENTS research permits to carry out this project. I also cordially thank the Office of the Prime Minister of the Government of Uganda for allowing me to conduct my ethnographic fieldwork in Kyangwali. My gratitude goes to the UNHCR Uganda, who not only acknowledged my research proposal, but also invited me to discuss my proposal and research results on several occasions.

This research project was also sustained by the support of my family and friends in Switzerland, Uganda and Denmark. I am so thankful for your continuous interest, for the visits to all the places this research project took me, and for providing me with a home away from home. I thank my various roommates in the different places for making me feel so welcome and for creating great working environments. I especially thank my Mum and Dad and my brothers for always believing in me without a doubt and for giving me all the support I needed to complete this project. My heartfelt thanks go to Francesca Rickli, who has been a great friend, critical voice and source of immense support throughout this project. I am so glad I was able to make this PhD journey together with you, although we lived on different continents for most of the time. Rehema Bavuma became a very close friend during this journey as well. I thank you for the shared joys and worries and the many office hours we spent together.

My greatest thanks go to all the interlocutors who took part in my study. I express my gratitude to the aid workers for their expertise and knowledge, and I thank the various aid agencies in Kyangwali for giving me a hand in finding answers to my questions. I am, however, most of all grateful to all the people with disabilities in Kyangwali and their families who so kindly let me participate in their daily lives, and who shared their knowledge and opinions with me. This study was only possible due to the many hours they spent with me, and their openness towards my queries and interests.

Glossary of Locally Used Terms e English (Ugandan)

k Kinyabwisha

l Luganda

s Swahili

airtime (e) top-up for mobile phone services

mtishobwoye/batishobwoye (k) ‘vulnerable person

boda boda (l) motorbike taxi, a Ugandan rendering of the word ‘border’

greens (e) various types of green leafy vegetables

kajoriti (s) disabled person; a Swahili rendering of the word ‘casualty’

kanzu (s) long white robe worn by Muslim men in East Africa

kavera (l) plastic sachet or polythene bag

kitenge/vitenge (s) fabric with colourful prints

kuongeza (s) to add

mandazi (s) snack of sweet fried bread

matooke (l) green bananas, also called plantains

mboga (s) cassava leaves; also general expression for vegetables

msaada/misaada (s) support, help, assistance

mzee/wazee (s) old man; also a respectful way of addressing older men

obushera (k) sorghum porridge

pikipiki (s) motorcycle

posho (L) staple meal (porridge) made out of maize

rolex (L) egg omelette rolled in a flatbread, popular Ugandan street food

shangazi (s) aunt

ugali (s) staple meal (porridge) made out of maize

kilema/vilema (s) (physically) disabled person

kipofu/vipofu (s) blind person

kiziwi/viziwi (s) deaf person kiongozi/viongozi (s) leader, official

watu wasiojiweza (s)

mzazi/wazazi (s)

mzungu/wazungu (s)

GLOSSARY OF LOCALLY USED TERMS leader, superior; literally ‘big person’ (physically) disabled person

‘vulnerable’ people; literally ‘people who are not able’

parent

white person, European

Abbreviations

ADF Allied Democratic Forces

AHM Africa Help Mission

ART Antiretroviral Therapy

AIDS Acquired Immune Deficiency Syndrome

CNDP Congrès national pour la défense du peuple (National Congress for the Defense of the People)

CSB Corn Soy Blend

DAR Development Assistance for Refugee Hosting Areas Strategy

DRC Danish Refugee Council

EVI Extremely Vulnerable Individual

GoU Government of Uganda

HI Handicap International

HIV Human Immunodeficiency Virus

HRIT Heightened Risk Identification Tool

ICRC International Committee of the Red Cross

IDP Internally Displaced Persons

IOM International Organization for Migration

LRA Lord’s Resistance Army

NGO Non Governmental Organization

NRR Nordic Refugee Relief

OCHA United Nations Office for the Coordination of Humanitarian Affairs

OPM Office of the Prime Minister

PSN Person with Specific Needs

PWD Person with Disability

PLWD Person Living with Disability

REC Refugee Eligibility Committee

ReHope Refugee and Host Population Empowerment

RIMS Refugee Information Management Systems

RSD Refugee Status Determination

RWC Refugee Welfare Council

SRS Self Reliance Strategy

UNCRPD United Nations Convention on the Rights of Persons with Disabilities UNICEF United Nations International Children’s Emergency Fund UNHCR United Nations High Commissioner for Refugees

ABBREVIATIONS

United States of America

United States Agency for International Development Vulnerability Analysis Mapping

Water, Sanitation and Hygiene

World Food Programme

Women’s Refugee Commission

Introduction

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. Camille! 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 tricycle? 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’s? 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,* 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

1 Iuse pseudonyms for all my interlocutors in this book.

2 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.

4 Iuse the terms ‘disabled people’ and ‘people with disabilities’ interchangeably. The use of the ‘people-first language’ (ie. 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).

© MARIA-THERES SCHULER, 2024 | DOI:10.1163/9789004683020_002 This is an open access chapter distributed under the terms of the cc BY-NC 4.0 license.

seated in the front rows. The festivity’s programme included the guests visiting schools and households, a show by the ‘Inclusive Drama Group’, a performance by a locally-known musician with a disability and several speeches. As is usual at such events in Uganda, the official start of the programme was delayed for several hours until the guest of honour arrived.

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.”

It was particularly after this occasion that I started to wonder whether everybody involved in the project would consider it such a success. For people with disabilities and their families, this event was the last in a series of activities that were organized especially for them, and it bore quite a different meaning. “We felt sad that they [Aid Global] were leaving us,’ Mugenzi, the man with two amputated legs, told me in retrospect. He explained to me at that point:

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

5 Aid Global, project brochure, handed out in Kyangwali in July 2015.

12 months of fieldwork, however, their tone towards the project changed. While people with disabilities had placed great hope in the project, many of their expectations were eventually disappointed: the project was limited not only in time, but also in the kind of assistance it provided.

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 were also entitled to special assistance, which they could claim from an authority — in their case a supranational organization, the United Nations High Commissioner for Refugees (UNHCR).®

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’ people’ 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

6 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 201; 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).

7 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).

establishing norms and standards which seem to be objective, there is a risk that these categories exist unquestioned, although they are by no means unbiased. Given the immense range of the UNHCR’s categorization approach — in 2015 the agency employed more than 9,300 staff in over 125 countries, assisting 42.9 million refugees and other people of concern (Sandvik and Jacobsen 2016, 1) — the absence of any discussion of these categories and their assessment criteria is particularly astonishing.

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 Kyangwalii, 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, where inability and dependence were not only defined differently, but also carried a distinct meaning.

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 most people in that country today survive partly by making distributive claims on other people's income streams and wealth. I experienced the relevance of these relations, within which people who have more are supposed to support and protect those who have less, in my own position during my fieldwork in Kyangwali. As a white researcher with a certain connection to the service providers, some people addressed my research assistant and I with the words wakubwa (Swahili for ‘big people’), viongozi (Swahili for ‘leaders’), or wazazi (Swahili for ‘parents’), which they also used for humanitarian and governmental staff, and often asked me for financial contributions or help to acquire things, for example, an assistive device from an aid agency.

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).