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Nodding Syndrome in Northern Uganda 133 Promotor Prof. dr. Koen Stroeken Co-promotor Prof. dr. Rijk van Dijk Decaan Prof. dr. Marc Boone Rector Prof. dr. Anne de Paepe Nodding Syndrome in Northern Uganda Conceptualizations of an Illness-in-the-Making Karin van Bemmel Proefschrift voorgelegd tot het behalen van de graad van Doctor in de Afrikaanse talen en culturen 2017 Two oneko latina* (The disease killed my child) This disease has spoiled my home I saw their bodies being buried I saw it in a dream I waited for the boy and girl in vain I saw their bodies being brought I saw it in a dream This disease has killed my son in water And my daughter in fire Oh my child! I waited in vain for my son and daughter The disease killed the children in the water I saw their bodies being brought I saw it in a dream My daughter burnt her face Her limbs were amputated I am mourning my child Death is now painful in Tumangu Who is going to help us? I saw my daughter being buried I saw it in a dream I waited in vain for my son and daughter The disease killed them in the water I saw the children being killed Song by Okony Tumangu Tim * Recorded by Van Bemmel & Aalten in Kitgum, 2014 Translation by Denish Okidi Contents Two Oneko Latina v Acknowledgements 3 PART I INTRODUCING THE UNKNOWN 7 1. Introduction: The Creation of a Black Box 9 PART II LABELLING THE UNNAMED 35 2. Nodding Syndrome or Disease? On the Conceptualization of an Illness-in-the-Making 37 3. The Rise and Fall of Nodding Syndrome in Public Discourse: An Analysis of Newspaper Coverage in Uganda 59 4. Universal Classifications, National Approaches and Specific Situations: A Comparative Study on the Conceptualization of Nodding Syndrome in Uganda and Tanzania 87 PART III MANAGING THE INCURABLE 111 5. Phone Calls and Political Ping Pong: Nodding Syndrome and Healthcare Provision in Uganda 113 6. The Quest for Treatment: The Violated Body of Nodding Syndrome in Northern Uganda 133 PART IV THINKING OUT OF THE BLACK BOX 153 7. Conclusion: Thinking Out of the Black Box 155 Annex: Film Documentary Nodding Syndrome: An Illness in the Making 173 Bibliography 177 Summary/Samenvatting 189 About the Author 197 Acknowledgements The completion of this dissertation has been made possible through the encouragement and assistance of many. First, I would like to express my sincere appreciation to my doctoral supervisor Professor Koen Stroeken for showing confidence in my work and his guidance and suggestions at various stages of this study. Furthermore, I am truly grateful to Professor Rijk van Dijk for his continuous support as co-supervisor and his enthusiasm in regard to the research. A very special gratitude goes out to the children affected by nodding syndrome and their families in northern Uganda, who gave all the input without which this study would not have been possible. I admire their strength and ability to keep smiling under extremely difficult circumstances, and I feel indebted to them for allowing me to be part of important events in their personal lives. Auma, Aparo, Onencan, Anena, Aciro, Acan, Aromorach, Alice, Aber and all others: Thank you for sharing your stories on often sad and painful topics, for allowing me to attend the burials of your loved ones, the consultations with various healers, the tears of joy when dancing together and the tears of sadness when mourning those who passed away. Apwoyo matek for teaching me patiently all the things seemingly taken for granted, for showing me great resilience, strength and kindness. I also wish to express my gratitude to the staff members of Kitgum Hospital, Kitgum District and the Ugandan Ministry of Health, who rendered their help during the period of fieldwork and allowed me to follow them inside laboratories, during outreaches, surveillances and meetings, and involved me in many of their daily activities. I am also thankful to my colleagues at Ghent University (Belgium) and the African Studies Centre (the Netherlands) for their continuous support, the Children and Youth literature group for the inspirational gatherings, the UNCST for approval of this study and the Bijzonder Onderzoeksfonds (BOF) for granting financial assistance. Immeasurable appreciation for the help and support are extended to the following people who, in one way or another, have contributed to this study: Janani Loum, Otto Joe, Wellborn Bongomin, Denish Okidi, Joseph Oweka, Jenifer, Jacky, Alum Rose Barbara, Akol Deborah, Simon Opio, Denish Olaya, Adong Josephine, Geoffrey Okello, Geoffrey Akena, Beatrice Anywar, Luka Nyeko, Dr. Bernard Opar, Dr. Richard Idro, Dr. David Kitara, Dr. Catherine Abbo, Lanyero Mary Grace, Omar Ibrahim, Abduallah Juma Jalleh, Sheikh Eriasa Katongole, Bisase Zakaria Saddam, Stephen Komakech, James Okello, Jackies Moi, Jean Laker, Michael Okech, Richard Oketcho, Milton Ojede, Milly, Denis Nelson, Angwech Collines, Apio Christine, Suzanne Gazda, the late Opira Morise Kato and the choir of Okony Tumangu Tim. I 3 am also grateful to staff members of Gulu Hospital, Gulu NGO Forum, AVSI, TPO, MSF, Peter C. Alderman Foundation, Red Cross, GULFA, Hope for Humans, Mighty Fire radio station, WHO, CDC and all the others who gave their valuable comments at different stages of my work. I cannot express enough thanks to my family and friends for their continued support and encouragement over the past six years. Special thanks go to my friends in Uganda, Janani, Otto Joe, Sharon, Monica, Irene, Denish, Jean, Novia, Fred, Stephen, Wellborn, Collines, Quinto, Mama Caro, Deo, Femke, Marta, Davide, Henni, Theo, Sarah, Samantha, Christina, Sara, Lisa, Pauline and Marije, for making me feel at home in Kitgum. I am also thankful to my friends in Kenya, the late Alfred Odira, Dante Ochieng, Elvis Otina, Joseph Olwal, Dorothy Adhiambo and Charles Otieno, for offering me a home away from my Ugandan home. In the Netherlands, the friendship and encouragement of Minke, Maria, Anneloes, Daniëlle, Thijs, Aalt, Elly, Femke, Roos, Bibi, Danniel, Marloes, Sophie, Sara, Runa, Jurre, Remy, Daan, Gitty, Inge B., Inge L. Jonna, Lidewyde, Marianne, Marleen and Suzette have kept me optimistic throughout the writing up of this thesis. Furthermore, a big thanks goes out to Dieter for challenging me both academically and personally, helping me to find my way through the Belgian education system and for welcoming me at his family’s home. I thank larema Mary Rose for more than fifteen years of friendship, for sharing a love for the African continent, for speaking the same language and for travelling all the way to northern Uganda. Finally, I would like to acknowledge with gratitude the support and love of my family –my parents, Jos and Elsbeth; my brothers, Erik, Ralph and Sjoerd and my children Merle and Senna. Thank you for making me happy, for inspiring me to travel and for offering a second home to my daughters (as well as our cat). A last but very special gratitude goes out to the man who became a husband and father during the unfolding of this dissertation. Evert (Daniel Komagum); without your spirit of adventure in regard to our stays in Uganda, your patience in regard to my long hours writing and your love and dedication to our young family, this book would not have been written. Even more, without your presence in Uganda I would have missed the amazing songs sung by caregivers, the dancing with patients at the end of hot afternoons at the hospital ward and the motorbike rides through the stunning landscape of northern Uganda. Thanks to the countless evening hours you have spent behind the computer screen, at times scolding the slow program and regretting your commitment to this project, we had the opportunity to make a film documentary based on my fieldwork. So on top of the love and encouragement you have shown during the process of this research, you are actually fully entangled with the work itself. I am grateful that you –being such a big part of my life- could be a big part of my work over the past years as well. Amari matek. 4 5 CHAPTER 1 Introduction: The Creation of a Black Box Introduction “We have a disease in northern Uganda, codenamed nodding disease”. These words, spoken by Beatrice Anywar during a Parliamentary Meeting in February 2012, mark the start of a series of political as well as public debates on the poorly understood nodding syndrome2 in Uganda. Although village health workers already noticed the repetitive, involuntary head nodding of young children in 1998, it took considerable time before the symptoms appeared on the national radar. Facing the Members of Parliament on a mid-afternoon in Kampala, opposition MP Anywar continues her statement as follows: The ‘nodding disease’ has been given that code name because of the signs it exhibits in the children who are suffering from it in northern Uganda. When you look at them, they are half normal. When they see food, the disease escalates; their heads seem to be very heavy to lift and they keep on nodding like monitor lizards. This has a painful effect on our people. The disease is not known and as we talk right now, 3000 children have so far been infected and about 200 have died. As a country, we do not know what this disease is. Madam Speaker, by the fact that we do not know the disease, we have not been able to address it. (…) When one moves far away, you find that the sick children have fallen in the water and died or in the fire in the kitchen and got burnt. In this household, when a mother is going to fetch water, she gets a rope and tethers the children like goats on a tree so that they do not wander about and fall in water or fire.
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