WE MISS YOU ALL Noerine Kaleeba: AIDS in the amily

Noerine Kaleeba with Sunanda Ray

Updated edition, with a foreword by Emma Thompson

Noerine Kaleeba is currently the community mobilisation specialist at the United Nations AIDS programme (UNAIDS) in Geneva, and continues to serve as the patron of TASO.

She was awarded an honorary doctorate of Humane Letters (Honoris Causa) by Nkumba University of Social Sciences, Kampala Uganda in March 2000. This was in recognition of her pioneering work in HIV and AIDS. She has also received awards from WHO, Sweden, Norway, the USA, Belgium and Senegal.

Sunanda Ray is the Executive Director of SAfAIDS.

Noerine Kaleeba: AIDS in the amily – i © 2002 Noerine Kaleeba and Sunanda Ray

Extracts from this publication may be freely reproduced for non-commercial purposes, with acknowledgement. A complimentary copy of any material using such extracts should be sent to SAfAIDS. These copyright conditions also refer to translations of extracts from the publication. Reproduction or translations of the book as a whole requires the written permission of all copyright holders.

(unding for this second edition was provided by the UNAIDS Inter-country Team for East and Southern Africa. The first edition published by Women and AIDS Support Network (WASN), was funded by Swedish International Development Agency (SIDA). UNICE( funded the first reprint.

Illustrations by Jane Shepherd Photographs by Noerine Kaleeba and Sunanda Ray

Published by SAfAIDS, PO Box A509 Avondale, Harare, Zimbabwe Tel: 263 4 336193/4, (ax: 263 4 336195 [email protected] Design and Layout by (ontline Electronic Publishing, Harare, Zimbabwe Printed by Préci-ex, Les Pailles, Mauritius

Proceeds of the sale of this book will be shared between hospice organisations in Uganda and Zimbabwe.

Second edition 2002 (irst printed in 1991, reprinted 1992

ISBN: 0 7974 2525 X

ii – We Miss You All WE MISS YOU ALL Noerine Kaleeba: AIDS in the amily

Noerine Kaleeba and Sunanda Ray

The Names Project is an international project that commemorates the people whose lives have been affected by HIV and AIDS. Relatives, partners and friends have sewn panels with the names of their loved ones and some symbols of their lives. These panels are then joined together to make one enormous quilt that symbolises the grief and love felt by all these people for those who have died. It also makes a statement that their lives are important and that they are deeply missed. The original TASO quilt was the first African panel to be included. The title for this book, We Miss You All, was drawn from the second TASO quilt (shown below). The courage of the families who have put the names of their loved ones on the quilts have contributed towards a more open and supportive attitude towards people living with HIV and AIDS.

Photo: Inge Tack

Noerine Kaleeba: AIDS in the amily – iii Noerine and Sunanda at the XIV International AIDS Conference in Barcelona

iv – We Miss You All Contents

(oreword by Emma Thompson ix Preface to the Second Edition xi

Part I: AIDS in the amily 1 The (ateful Telex 1 My (irst Encounter with AIDS 4 Meeting Chris 6 The War 10 My Journey to Chris in England 12 In Hospital in England 13 The Accident 15 My HIV Test 17 (irst Visit to Geneva: Meeting Jonathan Mann 19 The gay men in my life 20 Going Home 21 My Work as a Physiotherapist 24 (ighting in the Open 26 Why I came out in the open 27 Chris’ Return Home 29 The Search for a Cure 32 Chris’ (inal Illness 34

Part II. Tackling AIDS with TASO 39 Why I chose to live positively 43 The joy and sorrow of working in TASO 47 Living Positively with AIDS 48 Personal victory over the virus 52 Clinical Care 55 Counselling at TASO 57

Noerine Kaleeba: AIDS in the amily – v Counselling the counsellors 58 (ighting in the Closet 61 Philly Lutaaya 62 Coming Out and Denial 67 Love Carefully 69 Traditional Versus Modern: Polygamy as I Grew up with it 71 Loving (aithfully: Where does it Start? 73 Talking About Sex 75 When one partner is positive, the other negative 79 Teenage Sexuality 80 Talking to my Own Children About Sex 82 Above all, the truth 83 Sexually Transmitted Infections and HIV 84 Inheritance and Other Laws 86 Orphans and Other Children Affected by AIDS 89 Conversations with my Daughters 92 And What About the Grandparents? 96 TASO today 98

Part III. rom Kampala to Geneva 99 Hope and dilemmas 99 (irst Steps Out of the Nest 102 The Move to UNAIDS 104 Loving and leaving 105 Coming Out as Sero-negative 107 AIDS Continues to Ravage my (amily 110 Pain: Still not a High Enough Priority 111 Hope for HIV-infected Parents and Their Children 112 Antiretrovirals in the (amily 115 My appeal to you all 117 My Personal Support System 119 Message for the (uture 124

vi – We Miss You All Dedication

I dedicate this book to six women:

My five daughters Elizabeth, Julliet, Phiona, Marion and Christine and mother-in-law, Zabeeti, who silently mourns the death of her children, but has been a source of encouragement to me. A grandmother with an ever-increasing number of orphaned grandchildren.

Noerine and daughters: Christine, Marion, Elizabeth and Phiona

Noerine Kaleeba: AIDS in the amily – vii Emma Thompson with Noerine Kaleeba during the ActionAid trip to Uganda

viii – We Miss You All oreword by Emma Thompson

The author of this book has not had what you might call an easy life. After reading We Miss You All, I fully expected to meet a sad-eyed human crushed by the terrible burden of too much tragedy in a single life. However, when we were introduced by ActionAid (for whom she acts as the first African trustee), a six-foot amazon stood before me, youthful, articulate, boundlessly cheerful and extremely funny. She had just turned 50 and I asked what she was going to do for her birthday. “There will be rejoicing” she said, grinning from ear-to-ear, “and many cows will die.” I think we became friends at that moment. Noerine took me to Uganda in (ebruary 2002.1 It was a great privilege to visit the country that has spawned so many extraordinary activists in the AIDS battle, to meet Noerine’s mother and the enormous family that has become hers through the untimely death of siblings and cousins. The first thing Noerine did upon arriving in Kampala was to visit her niece Harriet, who is HIV-positive and had told Noerine she was dying. “Until you die” growled Noerine, “you are living – I will remind her of this.” The remark gave me a clue as to what drives this incredible woman: an inexhaustible belief in and talent for being alive. Throughout our journey, Noerine kept me sorted. She forced me to eat vast mounds of matooke (cooked green plantain, the staple food in Uganda), dragged me into the bush to pee on our long journeys, cried with me when we visited the dispossessed amongst her countrymen, told me off for wearing stained old Scholl sandals on official visits, became my body-and-soul guard on a trip into the heart of this global emergency, AIDS. And nothing prepared me for the emotional impact of Noerine with her foster-children, a raft of little heads all bobbing around trying to get close to the mother ship. Nor for the sight of the graveyard near her house with its memorial stones for her sister, her brother, her niece...

1A documentary film of this trip called “Journey of Hope” was shown on British television in April, 2002.

Noerine Kaleeba: AIDS in the amily – ix It is difficult not to think of Noerine as indestructible. The energy she gives off is so life giving, her achievements are so colossal. But, towards the end of our visit, as we were re-entering the hotel, a young woman approached us. Noerine smiled with pleasure. “This is my niece”, she said, as the young woman fell upon her neck in floods of tears. Later, over a beer, Noerine told me that the sleek, smart, 26-year old professional had just discovered she was HIV-positive. (or the first time in our trip, she looked tired. “I can’t take her on. I’ve sent her to a counsellor. They all think I can solve it.” I pointed out that as a survivor, she has become a vessel of hope. People can’t help wanting her care, her courage. But there isn’t enough to go round. Already the monthly budget for her own house in Kampala has been stretched to breaking point by the arrival of another sick relative. Everyone thinks she is a bottomless pit of resources. “I am not”, she says sadly. There are heroes and heroines like Noerine throughout Uganda, throughout Africa, but none of them can do it alone. They need us to get behind them. With our help, Noerine will continue to make a huge difference, suffering will be alleviated, lives saved. But I always try to remember that the most important thing is the hand of friendship, the human connection, the understanding that AIDS isn’t someone else’s problem. It’s ours. I’ve never met anyone more impressive than Noerine Kaleeba. Please read this book and give it to everyone you know. You can help.

Emma Thompson London, August 2002

x – We Miss You All Preface to the Second Edition

A decade has passed since we published the first edition of this booklet. Great volumes of water have gone under the bridge, a lot of changes have happened. My family and I have experienced expectation and excitement, frustration at unfulfilled expectations, joy at our limited successes. We have continued to experience the intense emotions of love and loss of friends and family. So many changes, and yet so much remains the same. One thing that remains the same is my faith – if anything, the past 10 years have made it even stronger. Today, just as I did 10 years ago, I begin this account of my life and the circumstances surrounding my personal encounter with AIDS, I want to thank God and offer glory to His Name for the three special gifts he has given me:

The Gift of Life The Gift of My Children The Gift of (riends.

Today, as then, I want every line of this account to be a reflection of my praise to God for his continued sustenance to me and my children, and a reflection of my gratitude to all my friends, to all people living with HIV and AIDS, and everyone who in one way or another has given friendship, true friendship, to them. I thank all my friends, a long inexhaustible list. A few will appear in this account, others I met only briefly, many are no longer in this world, but all have made a permanent impression on my life. In the first edition, I thanked the following: My parents and parents- in-law, and my late father, Tadeo Lutwaama (rest in loving peace); The staff, doctors and nurses at Castle Hill Hospital: Dr Nanda, Sister Wulthers, Sister Camilla (isher, Nurse Pat Chew, Janet, Ann, Dr Symonds, and (ather Storey; My friends at the British Council: Debbi Vowels, Jan Webster, Norma Branton, and Keith Binti; My friends at

Noerine Kaleeba: AIDS in the amily – xi TASO: Mary, Peter, (lorence, Margaret, Clare and (red; My friends with whom we started and developed TASO: David, Nastor, Mary, Jason, Rose, Jane, Charles, Godfrey, Peter, Wilson, Winifred, Rachael, Deborah, Musa, Nampologorna, Joyce, Colin, Joseph, Juma, Betty, Henry, Molly, Kate. I also thanked a number of people who assisted with the production of the first edition: Mary Bassett, Eileen Chinyadza, Rachel Howard, Helen Jackson, Mercy Jumo, (arai Madzimbamuto, Tambudzai Madzimbamuto, Sarah Laher. Constance Samuwi, Ann-Lone Thwaites, and Everjoyce Win. There are many names I would like to add to that list, but it would fill another book if I put all of them in. My work with TASO and then with UNAIDS has brought me into contact with many wonderful people from various parts of the world, and I have been blessed with support and friendship from sources I would never have expected. In particular, the informal group that calls itself the (ONK ((riends of Noerine Kaleeba) has been wonderful to me over the years, and I hope the individual members will forgive me if I thank them collectively. The current “chair” of the group is Sandra Anderson, whose wisdom and affection I value more than I can say. I would also like to thank Emma Thompson for contributing the foreword to this edition, Andrew Wilson for helping to update it, Sandy Beeman for editorial help, and Tinashe Madava at SAfAIDS for production. (inally, Sunanda Ray and Brigid Willmore helped me write the first edition, sorting out the mess of events, ideas and emotions expressed by me and presenting them in a useful manner. Sunanda was the driving force in getting We Miss You All written in the first place 10 years ago, and has played that role once again in this new edition. I thank her for it and for her ongoing friendship. Tragically, Brigid was killed in a car accident on 6th May, 1992. I dedicated the first reprint of the book to her, and continue to honour her memory.

Noerine Kaleeba Geneva, August 2002

xii – We Miss You All Part I: AIDS in the amily

The ateful Telex

AIDS came to my house on the afternoon of the 6th June 1986, when the British Council sent me a telex to tell me that my husband Chris was seriously ill in a hospital in England. He had gone to Hull University to do his postgraduate training the previous year.

I often wonder what my life would have been like today if that telex hadn’t come. I know that Chris was already ill and dying, long before the telex was sent, but I always connect my misery and subsequent suffering to that telex. The British Council in Uganda did not know where I lived, but they knew from the papers that Chris had filled in before he went to England that I worked at the School of Physiotherapy at Mulago, Kampala. Debbie Vowels, who was working with the British Council in Kampala, first went to the school and found that I had just left to go to my part- time work with the Katalemwa Cheshire home. In Uganda nearly everyone has more than one job, to make ends meet. At home she found that I had taken a group of disabled people to a meeting. As it was late she was given my home address, and went to a lot of trouble to find the house. She left an urgent message asking me to go to the British Council office the next morning. When I read the note I couldn’t think what could have happened, but I knew immediately that it had to do with Chris.

Noerine Kaleeba: AIDS in the amily – 1 During our last telephone conversation in May, Chris had told me that he was not coming home, as we had been anxiously expecting. His request to register for a PhD had been accepted by the British Council, and so he would be away for another year. The girls were more disappointed than I was. They had already started crossing the days off on the calendar. I knew, however, he would be better of coming home with both a Master’s degree and a PhD. The political atmosphere in Uganda was also getting better, and there was a general feeling of euphoria, so the prospect of another year without him was not as desperate as it would have been a year before. Throughout that night in June, after receiving the message left for me by the British Council, I went through the possibilities. It never crossed my mind that Chris might be ill. So when I went into the British Council the next morning, and was given the telex, I was shocked. My husband was critically ill in a British hospital. He had been unconscious for three days. Had he been involved in an accident again? No. He seemed to have meningitis. He was not in pain, but his condition was critical. Everything was being done for him. The British Council staff were very solicitous, offering tea, and comforting me. They suggested I return the next day for more news. I left, walking like a zombie. (ortunately, I had come with my friend Mary; otherwise I would have been run over on the road. The following day I went back with my friends Mary and Margaret to the same news. His condition was still critical; everything that could be done was being done. Everyone was excessively nice and kind. Suspecting that he had already died, I began to panic and make a scene. I wanted to go to him. He needed me. But the Council people had to ask London first. I went to a friend in the microbiology laboratory to ask him what he knew about meningitis. He suggested that I find out what type of meningitis Chris had. I went back to the British Council with the question. The following day the answer came, cryptococcal meningitis. My microbiology friend reacted in a funny way and asked if I was sure it was cryptococcal. I went back to the British Council and asked Debbie to write it down for me. My friend in the laboratory then asked me to find out if they had done an HIV test. I vaguely wondered what the HIV test had to do with it, but I went back the next day and asked the question. Everybody looked at each other. They said they would relay the question, and asked

2 – We Miss You All me to come back the next day to talk to the doctor on the phone. I can’t recall quite how I got through those days, but I remember that the days merged into nights and I was crying a lot. The girls were devastated by my tears, and I couldn’t even support them. All I knew was that Chris was dying. When I went back the next day, Dr Symonds told me on the phone that the HIV test results were positive. The news did not register right away. I was already saturated with misery. I did not believe it. There was no reason whatsoever to associate my husband with a white homosexual disease, which was what we knew about it in Uganda at that time. I did not believe it, and I did not know the magnitude of the stigma associated with AIDS, so I told my friends at work and the neighbours. I told my in-laws, and my parents. I told anyone who came to sympathise with me. Meanwhile arrangements were being made for me to go to Chris. I had to organise care for the children, so one of my sisters came to stay with them. The children suffered tremendously throughout this time. I was so locked up in my own self-pity and devastation that I did not know how to comfort them. During all this time however I was actually aware of the kindness of the people at the British Council, although I was also aware that they were bewildered and seemed to know something they could not tell me.

Noerine Kaleeba: AIDS in the amily – 3 My irst Encounter with AIDS

In 1983 some doctors in Uganda had started reporting cases of a disease that seemed similar to one being reported in the USA. The reaction of the Ministry of Health was that we already had enough problems with the war and the poor state of the economy, without trying to deal with AIDS as well. Yoweri Museveni, now President of Uganda, was then in the bush fighting the government, and things were really bad in the country. The attitude was: forget about AIDS: deal with the issues that you can do something about. After all, if people in the USA cannot cure AIDS then what is the point of saying that we have AIDS too? At the same time it was a sensitive issue: people were asking, where did AIDS come from? Was it from America? Was it Tanzania? At that time patients were being seen, but they were not talked about as having AIDS. Other words were used, like immunosuppression, because the instruction from the Ministry of Health was not to talk about AIDS, to avoid creating a scare that couldn’t be dealt with then. As a physiotherapist, at Mulago Hospital, I had heard intermittent reports of this mysterious and deadly illness, caused by a virus that did not respond to treatment. The early reports connected the illness with white homosexual men in San (rancisco. At that time I had a few white friends who lived in Britain, but none of them was gay. Like many people my reaction was to dismiss the illness as having nothing to do with us in Uganda. But then in 1983, we began to hear reports about a similar illness that was affecting people in the Kesensero area on the southwest border with Tanzania. These people were associated with illicit trade across the border, which seemed to have something to do with the mysterious illness. There was also a strong rumour that the disease was contagious, and highly infectious sexually. I still dismissed the problem since there was nobody I knew in that area, nearly 200 kilometers from where I lived. My very first encounter with a person with AIDS was brief. At the time I dismissed it, but today the experience is very vivid in my mind. I had gone to one of the medical wards in Mulago to locate a paraplegic patient for a practical demonstration for physiotherapy students on the techniques of transferring a paraplegic from a bed to a wheelchair. I located a young man who couldn’t have been more than 30 years old. I introduced myself and explained what I required of him.

4 – We Miss You All He was very receptive and gave permission for my students to learn from him for that afternoon. His medical notes indicated that he had paraplegia due to Immunosuppression Syndrome, but I did not know what that was. I went to the ward sister to get permission to teach the students on her ward that afternoon. She came closer to me and said “I wouldn’t touch him if I were you. He has AIDS. We don’t touch him, we only show his mother what to do.” I did not use him for the demonstration. Neither did I go back to him and explain that I would not be coming. I cancelled the class and arranged for another patient from the orthopaedic ward. I did not think about him again, until the diagnosis of AIDS came through my front door. Today there isn’t a day that passes when I don’t wonder what happened to him. With whom did he carry the burden? With whom did his mother carry the cross? What friends did she have to share her emotions? How much did he know about AIDS? What support did he have: God, children, loved ones? I suppose I will never know.

Noerine Kaleeba: AIDS in the amily – 5 Meeting Chris

I was born at Seta Nazigo, a small village 35 kilometers southeast of Kampala, the third of 10 children. I was educated at Sir Apollo School and Mount St Mary’s Secondary school, a missionary boarding school run by (ranciscan sisters. After my O levels I was accepted for training at the Mulago Hospital School of Physiotherapy. I was in my third year at the school when I met Christopher. He was handsome and smart, about 25 years old, from the same tribe as I. He said he loved me. I had had other boyfriends before, including one who was much older than I was and who used to give me many presents and spent a lot of money on me, but there had been no one I Christ (right) and friend wanted to marry. Chris had just graduated from the School of Radiography, and because he was ambitious he did not want children soon. I found myself head over heels in love with him. Life with Christopher was different. Exciting. My first exposure to love. What I missed of the material things that my older boyfriend had given me, I made up for in love and companionship. I could show Christopher to my friends. One of my early disappointments was that Chris was not accepted by my family. My father did not understand what I saw in this poor boy, and thought that because of his looks, he would not marry me but leave me high and dry as soon as he found another girlfriend. My mother’s protests were even louder. Christopher was not Catholic. My mother was always proud of having married a rich man, a chief, and having married in the Catholic Church. The situation was made worse because Chris and I lived together for a year and a half, and had our first baby, Elizabeth, before we had saved enough money for the wedding. We had

6 – We Miss You All a modest Christmas wedding on the 27th December 1975. Our second daughter, Phiona, was born in April 1976. Phiona was a lovely child, a carbon copy of her father, but Chris was disappointed not to have a son. It was even more of a disappointment for Chris because he had wanted to have only two children, while I had wanted six. Now that there were two girls, he would have to have a third child, a boy. This was a hard time in our relationship. We were struggling to make ends meet, and we had two very young children. I did not have any support from my parents, and my mother-in-law, who had been very supportive from a distance, was also disappointed that there was no son. We quarrelled a bit over the first baby, over the second, maybe even a little over the third. One of our problems was dealing with family planning and the need to limit pregnancy. We tried various family planning methods, including the condom. I did not fare well with the pill, and was scared to use an intrauterine device. So we used condoms, despite the fact that Chris did not like them much. He would use them, but become sulky afterwards and behaved as if he was unsatisfied.

Our wedding

Noerine Kaleeba: AIDS in the amily – 7 Around this time Chris began a relationship with another woman, in search of a boy child. Although I suffered the stress of deprivation during this time, I did not feel betrayed, deserted or angry at the other woman, because polygamy was something we had all grown up with. Another reason we didn’t argue about the other women was simply because our battles during that time were over the struggle to make ends meet. Our battles were not due to sexual jealousy, but over shortages in the house or the children going without something basic. Throughout this time Chris, because he loved me, did not behave in any way that showed that the other woman’s presence divided his love. The result of Chris’ boy-seeking ventures was another bonny little girl, Julliet. She too was a carbon copy of her father. (or years we rarely saw her, but in recent times she has become a full member of our family.

I’ve thought about that hard time and our relationship a lot since then: about the arguments, about the other woman, about there never being enough money, the ups and downs of life. In early marriage it is difficult to cope. The babies come. They are always crying. You are tired from work. You have to prepare the food. And then your husband goes out when he should be there to hold the baby while you cook. Our quarrels were about this, but the actual problems had stopped by the time Marion was born.

In the meantime, Chris had been studying privately for his A levels, and was accepted for a first degree at Makerere University. We were once again living happily as a family, and by the time Marion, our third child, was born in April 1980, we were a happy hardworking couple. I was working as a physiotherapy teacher, and Chris was studying sociology and social administration at Makerere. We suffered the life of married undergraduate students, but we were in love. Chris didn’t seem to mind this time that Marion was a girl. Perhaps the shock of having tried for a boy elsewhere and getting a girl had taught him a lesson. We were maturing, and began to talk in a more constructive manner, and plan our future. I think that by this time we had made up our minds that we were going to remain together. You know when the first babies come, especially when you are still young, you think from time to time, “One

8 – We Miss You All of these days maybe I’ll divorce this man and find another one.” But after the third baby we began to settle down. In December 1980, I was awarded a British Council scholarship to study orthopaedic physiotherapy in the UK. I was away for 10 months, from January 1981. Chris was a wonderful father to the girls, who were still very young, and it was during this time that the tight bond between them was formed. This love, support and dependence on each other, was beautifully demonstrated during Chris’ illness. The girls hold his memory as if he was still here. When I returned to Uganda, I was appointed Principal of the School of Physiotherapy. Chris had graduated and was working as a teaching assistant in the Department of Adult Education at Makerere University. He had graduated with an honours degree, despite having been a single parent during the worst time of his examinations. We were now earning a little more, the children were at school, and we were happy. Our fourth daughter was born on the 31st of December 1983. We were still hoping for a boy, and were going to name him Christopher. As the baby turned out to be a girl we named her Christine, which was also appropriate since she was born at Christmas time. Chris was making plans to go to England for further education. When the news came of his acceptance at Hull University on a British Council scholarship we were all overjoyed. He was very happy because he was finally going to realise his life’s ambition to become a university professor. I was happy because he was happy, and the girls were happy because daddy was going to be a professor! If Chris returned with a PhD, it would mean a better job and a better way of life. I was also working hard. I had a part-time job with Cheshire Homes that brought in some extra money. I had also made a lot of friends. If Chris had returned in the way we hoped, we would have had a good life. Chris left for Hull in July 1985 for the 1985-86 academic year, and registered for a Master’s of Education in sociology and social administration. His families were all there to see him off, together with the girls and me. I doubled my resolve to work hard and keep the girls in good shape for his return, just as he had done while I was away. This time the girls could also write to him. We were full of hope for the future. We were not to know on that day at the airport that it would be the last time we would see him looking so tall, smart and handsome.

Noerine Kaleeba: AIDS in the amily – 9 The War

After Chris left for England the girls and I settled down to the life of a family separated by distance but bound closely by the love they shared in letters and a telephone call once a month. By about October 1985 Chris’ letters began to contain complaints of stomach discomforts and the total lack of any foodstuff that was appealing. I put this down to his inability to cook. In all the time I knew him he never cooked anything other than coffee or tea. I teased him about living in England and wanting to eat in Uganda. By December 1985 the war that eventually brought the National Resistance Movement (NRM) lead by Yoweri Museveni to power had reached a climax. Kampala was surrounded and mail was not moving. We talked to Chris on the phone, but the conversation was full of war news. The second week of January 1986, which saw Kampala fall to the NRM, was a nasty experience. I had to hide with the four girls in the basement of our flat, where we stayed with no food and little water for three days. The departing soldiers were molesting, stealing, and raping women as they went, and it was God’s great mercy that by the time they came to our house we had already gone into hiding. After the fall of Kampala to the NRM, families with men were the first to get food, and our first food came from the neighbours.

>ive years ago in Uganda one man with a gun could walk through the door and take everything you had – just one man with one gun will make you lie down under the table and cover your face, while he takes everything. After you go through an experience like war, you come out a different person. Either you go down with the experience, or you rise, you are enhanced by the experience. So one of the things that the war experience has done for Ugandans is to produce a feeling of getting involved, a feeling of not wanting to suffer under the table.

Women and AIDS Support Network Conference Report, 1990:19

10 – We Miss You All I missed Chris terribly through this experience. He, on the other hand, had his ears to the radio all the time for news of the war. He actually heard the news of the victory before we did. I know now that during this time Chris was ill on and off with fever, loss of appetite, loss of weight, and mouth sores. He was also working doubly hard to complete his Master’s degree and register for a PhD. His professor told me afterwards that he was working hard and did not look after himself well enough. He drank endless cupfuls of coffee and ate from a nearby fish and chip shop. Chris’ explanation to himself for his ill health was that he was missing the staple Ugandan food (matooke), was working too hard, and was lonely and missing his family. On the 2nd of June 1986 he was referred by the University Health Centre to Hull Royal Infirmary where he collapsed and was diagnosed as having cryptococcal meningitis (an infection of the brain linked to AIDS). He was transferred to the care of Dr Nanda at Castle Hill Hospital. It was there that the diagnosis of AIDS was made when he was found to be HIV positive. In view of the grave diagnosis, and the fact that he was critically ill, the hospital asked the British Council to contact me in Uganda.

Noerine Kaleeba: AIDS in the amily – 11 My Journey to Chris in England

I was finally able to leave Uganda to see Chris on the 12th June 1986. I hardly remember the journey, which I seemed to make mechanically. I was met at Heathrow by a British Council guide, who took me to meet Jan Webster for the first time. Jan was then the Student Welfare Officer at the British Council in London, and was later to become a true and good family friend – one of the pillars of my support system. I was escorted on a three-hour train journey to Hull, and on the afternoon of the 13th June I entered Ward 4 of Castle Hill Hospital, and was gently ushered into the staff room by Sister Camilla (isher. After she offered me a cup of tea, which I could not drink, Dr Symonds, the house officer, came in to explain once more that Chris was gravely ill, that I would probably not recognise him, and that I needed to be very strong when I went into his room. I heard all this and nodded as he explained, but my only thought was to go to Chris. I still held on to a tiny possibility that this was all wrong, that I would get there and find that it had all been a mistake, a dream, a scare. Anything but not real. (inally he asked whether I wanted to see Chris and I said yes. I had to wear a sterile gown, footwear, gloves and a mask, as they feared I would infect him because of the state of his health. As I entered Room 10, and was met with what was left of what had been my handsome young husband, two things struck me quite vividly. (irst, that I did not have a husband anymore, he was dying, virtually dead. Second, I would have to be very strong for myself, for what was left for Chris, and for the girls. I didn’t cry then. I moved towards his bed like a zombie. He was awake and recognised me instantly. He lifted his frail arm, the one which was not strapped with tape and monitor leads, and attempted a smile. “What took you so long?” he asked.

12 – We Miss You All In Hospital in England

As I write this I am having to fight hard to keep the tears back. I cannot understand how it was that I did not cry in front of Chris, then or ever. It was not that I did not have any tears, for afterwards in my room I cried for a long time, until I fell into an exhausted sleep. I was grateful that the hospital staff left me on my own to deal with my sorrow. They kept a respectful distance, but they kept me under surveillance. The nurses were very afraid for me. I was impressed from the start by the attitude of the staff towards us. It was not long before I established that we were the only black couple on the ward, and their first heterosexual patients living with AIDS. Despite having two ingredients for stigma, we were treated with such care and compassion that it left an everlasting mark on me. It was then that I resolved that if God would allow me time and life I would like to return this kind of care to patients. They all went out of their way to be nice to us. Apart from the sympathetic way they nursed Chris, bathed him, combed his hair, dressed his wounds, they each did small things for him, like bringing him a flower from home, sending him a postcard when they were off duty for a few days, sharing their family photographs, and so on. I remember on his birthday, 23rd August, Sister Ann made a big cake with Happy Birthday Christopher on it. Everybody brought a card, and the staff came singing Happy Birthday. Although Chris wasn’t happy at all, he managed a smile. This, his 36th birthday, was to be his last. I was so moved I went to my room and cried forever. There were times when Chris would be depressed and wouldn’t talk to anyone the whole day. At first I would sit in the room and read to him, or just be around for him to direct his anger against. Sometimes the nurses would take me away for shopping. Then I would feel better, buying small things for the girls, although I did not know when I would ever see them again. In the second week the team was joined by the hospital chaplain, (ather Storey, who turned out to be a great support for both of us. Chris loved him, and whenever he came around Chris would be cheerful the whole day. (ather Storey would turn up with tropical fruit juice, and quite often he brought passion fruit. I don’t know where he found them, so far from London. Even when Chris would be vomiting everything he

Noerine Kaleeba: AIDS in the amily – 13 took by mouth, when the passion fruit came he would eat them eagerly and did not vomit. It was during the second week that Dr Nanda, the consultant, asked me if I would consider taking an HIV test. It was the first time that I realised that Chris’ being HIV-positive had direct implications for me. Up to that time all that I had focused on was that he was dying. He was my husband and he was dying. I sat down with Dr Nanda and Dr Symonds, they explained that AIDS is a sexually transmitted disease and what the implications of this were for me. They asked me many questions, including whether I knew where Chris could have got the infection. I didn’t. I couldn’t think at the time. Then they asked me if Chris had ever had a blood transfusion. Yes. He had had a blood transfusion. Chris had been given eight units of blood when he was involved in an accident. He may have got the virus from that blood transfusion, which meant that he could have been infected in Uganda.

14 – We Miss You All The Accident

I was at work on the 7th July 1983 when I was informed that Chris had been brought into casualty, bleeding profusely, having been run over by a bus. I rushed to casualty to find him on a trolley, his left leg twisted at a funny angle, and the doctor shouting for blood. In Uganda, like in many developing countries, blood for transfusions has to be found from relatives or volunteers, since there is never enough blood in the blood bank. I rushed around looking for blood donors. I was four months pregnant with Christine and unable to give blood myself. Two of my students agreed to give a unit each. I also rang all of Chris’ family around Kampala and informed them of the accident and of our desperate need for blood. Godfrey, his younger brother, was teaching at a nearby secondary school and rushed in to donate a unit of blood. As he was the same blood group as Chris, his unit was transfused straight away. Chris had to be given eight units altogether. Surgical repair of Chris’ patella tendon and setting the leg in the proper position were followed by a long period of immobilisation in bed. I had to use all my skills as a physiotherapist to hasten the healing and subsequent mobilisation. This was my first real exposure to the real value of true friends. My friend Mary supported me throughout this time, taking care of the children while I stayed in the hospital with Chris. In our country families often have to help patients with basic nursing care. He was hospitalised for two months and then discharged with a slight limp. Chris recovered slowly but surely, although looking back now I can see that he never really recovered his vitality. He was never the same man after the accident. It took a lot out of him. He seemed to just lose interest in life. Later that year, in December, our fourth child, Christine was born. I was working hard, and had an additional part-time job. Things between Chris and me had seemed much better since Marion was born, but by the end of 1984 we were having problems again. Looking back now, I know why he was feeling weak, but at the time I couldn’t understand it. Chris seemed to have lost interest in work, and was frustrated by his lack of success in registering for a Master’s degree. He had been making plans, before the accident, to go to England for further education. Often I would return home after my two jobs to find him in bed complaining that he was tired or not feeling well.

Noerine Kaleeba: AIDS in the amily – 15 In November 1984 he developed a skin rash and sores in his throat. The sores cleared up, but the rash persisted for three months. A skin rash and sores were nothing to be suspicious of, so I did not suspect anything. Chris also seemed to have lost his libido, which I put down to his having lost interest in me. He was tired all the time, disinterested and moody. We were only having sex about once in two months. I thought he was afraid of having another baby, and, knowing how much he disliked condoms, I had an intrauterine device fitted. When I came home with the good news, which I hoped would excite him into action, he was really angry and it sparked off a big quarrel. During the early part of 1985 we seemed to quarrel more easily, and made up less and less. He also seemed to talk less and less to me, but found comfort in the children. I was frustrated and unhappy much of the time, and so the children turned even more to daddy. This is when we started having major domestic problems again. In the time before he secured the scholarship to go to the UK our marriage was in trouble. Essentially I thought he had another woman, and so we were quarrelling most of the time, and everybody was doing 101 things to make ends meet. This didn’t help our relationship. I was working at two places, and I would only get home at about six in the evening. Chris would already be in bed. Those days he would go to the university, and then come home and go straight to bed. When he was asked why, he wouldn’t be able to explain it. He would say “I’m not strong enough. I am not feeling well. I’m not sick, but I’m not strong.” When the news came that he had been accepted at Hull University, we were all overjoyed. While he prepared for his departure we had a glimpse of the good old days. He was a happy, loving husband, and all the tiredness, which had characterised the previous few months, seemed to have evaporated. We had a lot of friends, and we began to plan to build a house. The news of the scholarship came at a time when Chris particularly needed it. His younger brother, Godfrey, had just died, in April 1985. Godfrey had been ill for about a year, from early 1984, with a skin rash, fever, loss of appetite, steady weight loss, and finally death from meningitis. Chris and Godfrey had been very good friends, so his death affected Chris greatly. We did not suspect, at that time, that Godfrey had probably died of AIDS.

16 – We Miss You All My HIV Test

When I was asked by Dr Symonds whether I had had sex with Chris after the accident, and the blood transfusion, I couldn’t tell him everything about the quarrels and irregular sex. There are some things you can’t even tell a doctor. I told him that we had had a time of normal sexual relations after the accident, and he said that meant that I was at risk of being infected. I might also have HIV. He didn’t ask me if I wanted a test, but insisted that it was very important for me to know whether I was infected or not. The next day a social worker was sent to talk to me. I don’t know if she had been through a counselling course or not, but she rushed me through the whole counselling process –up to “What would you like to happen to your children if your test is positive?” I was staying in the hospital at the time, in a bed just like a patient, in a room next to Chris. In the middle of the night I would look in to see him. Although there was 24-hour nurse cover at his bedside, I also liked to check on him periodically. After they had taken my blood I started to feel anxious about it, especially looking at Chris and the way he was looking and feeling. That was the time when he started having very bad headaches. I cried a lot then, alone in my room, but I never cried in front of Chris. I wasn’t just thinking about Chris, I thought about the children a lot. I was thinking about him dying, and how I was going to cope with the children on my own. But after the blood was drawn I also had to think about myself. Six days later they came and told me, “I’m glad to say the results of your test are negative.” But they were very strict, very intent on not giving me false hope. (rom what I had told them they felt that the chances were high that I was positive, but that it didn’t show up yet. They stressed that the results were preliminary, and another test would be needed six weeks later to confirm that I was in fact negative. I felt relief, but I did not feel happy about the result. In fact, the day I received the negative result it didn’t mean that much to me. It really didn’t. I knew it was a good thing. I knew that from the nurses, everybody was so excited for me. I didn’t tell Chris about the result that day, and when I did tell him, it was in rather an offhand manner. His first reaction was relief that I would be there for the children, although throughout his illness he was

Noerine Kaleeba: AIDS in the amily – 17 worried that I would marry again, or feared that I would become infected and die and leave the children with no one. He repeated this over and over. But from the day I told him the test result he started to plan for the future. The instructions were numerous. You have to do this. You have to take charge. You have to tell my mother this. You have to remember to tell my father that he should finish the house. You have to remember to do this and that. Earlier Dr Symonds, the house officer, had explained to me the implications of Chris’ having AIDS, particularly the possibility that I might be infected myself. I tried to find out everything I could about the illness. The Sister gave me what literature she could find. I spoke on the telephone to people in the Terrence Higgins Trust in London, and was put in contact with two people, Mark and Johnny, who were starting a “buddy service” in Hull. This was a kind of volunteer support system for people living with AIDS. They came to see us and were very supportive and sympathetic listeners, although the issues that Chris and I were having to deal with were a little different from theirs as homosexuals. They spoke about stigma associated with AIDS, but not having been exposed to it we did not understand what they were trying to tell us. Another source of support came from Chris’ university friends and his professor, Bernard Jennings. Whenever they visited Chris he was very happy discussing the campus and their work. The professor encouraged him to continue his work as soon as he was better, and I believe that it was this feeling that he was needed at the university which encouraged him to make slow but steady progress. Chris’ major problem was still diarrhoea and an inability to eat anything. He was being fed intravenously. After intensive therapy with amphotericin B, the cryptococcus was finally cleared from his cerebral fluid, and with intensive intravenous feeding with a specially formulated fluid he was able to restore some weight and enough strength to get out of bed to be taken to the toilet.

18 – We Miss You All irst Visit to Geneva: Meeting Jonathan Mann

As I tried to educate myself about HIV and AIDS, I came across the name of Jonathan Mann, who had only recently come to the World Health Organisation to head its new Global Programme on AIDS. These were desperate days for me and on impulse I set out – without phoning or writing ahead for an appointment – to find him in hopes that he would have a cure for Christopher. My friends in England all chipped in to buy me a return ticket to Geneva, where the WHO has its headquarters. My first sight of the imposing WHO building, high above Lake Leman, fuelled my hopes. Surely they would have the solution here! Yet I was in such a state that the polite inquiry from Dr. Mann’s secretary as to whether I had an appointment sounded most unreasonable to me. The poor lady tried to reason with me: Dr. Mann had a very important meeting scheduled to begin soon. My response was to burst into tears. Luckily – or perhaps it was destiny more than luck – Jonathan came out of his office at this point. He gently ushered me in and sat with me, holding my hand as I told him my story and asked my question: did his global programme have medicine to cure my husband? That question became a conversation, and he never went to his meeting that day. (or several years afterwards he often referred to our conversation as one of the early turning points in his mission to defeat HIV. (or me too this was not only a turning point but a major building block in the support system I would soon begin to build for my family and for other families affected by AIDS. Because Jonathan was frank with me: he stated his conviction that there was not going to be a quick scientific fix to the HIV problem and that the appalling stigma and discrimination suffered by people living with HIV and AIDS would be one of the key enemies we would need to fight. (rom that day I began to accept the bitter reality that there would be no cure for Christopher, that HIV was already a global problem and would continue to spread. Jonathan’s tragic death in an air crash on 2nd September, 1998 was a shock for the HIV community – activists, researchers, administrators – the whole world over. (or myself, I shall never forget that one of the roots of TASO stretches back to a Geneva office, where a kind person – the best kind of doctor – took time to listen to a desperate woman and to speak to her honestly about the situation she and her loved ones found themselves in. I want to pay special tribute to him here because of the hope and inspiration he gave me.

Noerine Kaleeba: AIDS in the amily – 19 The gay men in my life

One of the great things Jonathan Mann did for me was to pass on the name and address of Richard Rector. This young HIV-positive American man was open about his status and working on awareness campaigns for young people at the time. Richard was to become a key pillar of my support system for 10 years till his death in 1997. He was the first HIV- positive person I met who talked about “living with HIV” and convinced me that there could be good quality life after an HIV diagnosis. Later we worked together as members of the Global Commission on AIDS that Jonathan set up – Jonathan insisted that HIV-positive persons like Richard and community organisers like me should sit on the Commission, along with the scientists and public health officials.

Like Mark and Johnny, the two men I’d met in Hull, Richard was gay. This was something new for me: in Africa, we generally don’t talk about homosexuality except to pretend it is a purely foreign thing. Mark and Johnny were the first “out” gay people I had ever met, but their friendship and support for Christopher and I during that short but painful time was a priceless gift. I went back to Hull many years later to find them, but heard they had both died.

My great respect for the gay community – men and women – stems from their persistent efforts to keep HIV and AIDS high on the global political agenda. So many of ground-breaking achievements in the last 20 years, particularly in science and global solidarity, have been due to their persistence and courage. Gay men in the industrialised countries were the first community to suffer the pain of loss and bereavement. But even though they have won most of their battles in their own countries, they have remained with the cause. >rontliners like Eric Sawyer, the founder of ACT-UP (New York) and Hans Binswager of the World Bank are now focusing their advocacy efforts on improving access to treatment in developing countries. I applaud and thank them.

20 – We Miss You All Going Home

We were at the hospital in Hull for a long time, an agonising experience. Chris would get better, then he would be bleeding through the nose, the next day the diarrhoea would be less, the next week he would have a cough and fever. Through the ups and downs we received a lot of support from many different people. I can’t even begin to thank them for what their support meant to us both. But the time came when we started talking more seriously about the future. At first, I had understood that Chris was going to die. Then it seemed that although his condition was too far gone for him to live totally normally, he would steadily recover and would be able to go back to university to finish his work. He knew that his only chance to complete his studies was to remain in England where he had access to medical care. What we totally underestimated was his need for support other than medical care. I mean the support that comes from family and friends. We made the decision that I would go back home to the children. My sister was looking after them and although we were communicating with them regularly, their letters indicated they were suffering from our absence. They weren’t suffering materially. Chris’ brothers, my sister, and Mary were all doing what they could to provide for their needs. I remember when the time came for Elizabeth to have her first communion, Chris’ brother Henry bought her a beautiful white dress and threw a big party for her. We saw the photographs of the ceremony. They were not uncared for. They were suffering because they missed us and because of the uncertainty. I had taken photographs during our stay in hospital, pictures of Chris at different stages. I put them in an album to send home so that the family could see what good progress he was making. What I didn’t realise was that I had become used to his appearance. When the album reached home, and people compared how he looked in the pictures to the way he looked before he left for England, it only depressed them even further. By the time I got back everyone had lost hope and was convinced that he was dying. My arrival home at the end of September was a very traumatic experience. I had left Chris in England knowing I might never see him alive again, and when I arrived at the airport I found a large group of

Noerine Kaleeba: AIDS in the amily – 21 friends waiting to meet me. I was very alarmed. I had not expected them. It was a working day and many of them should have been at work. There were my friends, including Mary and (lorence, Christopher’s brothers and sisters, my mother-in-law, and many others. They were wearing their traditional Busuti dresses and I wondered why they had to do that. Of course my fear was that while I was travelling from Hull, and had been in the air overnight, Chris had died. What made it worse was that when I asked them why they were all there, they looked at each other and didn’t reply. In our tradition, we do not talk openly about death. They didn’t know how to give me the news at the airport. They said they would tell me when we got home. The airport is in Entebbe. We started to drive to Kampala, but branched off to my father-in-law’s house, which is halfway from the airport to Kampala. When we got to the house my mother-in-law and everyone else started crying. I was still afraid that Chris had died. I asked them again, and they told me. My father had died. He had died the day before. I was grateful that I had been in time, that I was able to see him before he was buried. But I was so hurt that he died just the day before I arrived back. I loved that man, he was very close to me, and I felt devastated. There were two very important men in my life and they were dying at the same time. My father had been ill for nearly five years and was in a wheelchair. I had been taking care of him. It was as if he felt that now I had another invalid on my hands I wouldn’t have time for him. It was a big setback for me, and I was very lucky to have my family and Chris’ family with me. The urgency of having to support the children, having to work out the future, the urgency of getting on with life and preparing for the worst, may have helped me through the period after the death of my father. Also, the support and encouragement I received in England meant that I returned that much stronger and better prepared to face the world. Looking back now, I realise that although I was very hurt, I recovered quite fast from my father’s death, because I was able to be at the funeral and give him a decent burial. When I returned home in Uganda I found that things were not really the same. During the months I had been in England with Chris the AIDS issue had exploded in Uganda. Many cases were diagnosed but they were clothed in secrecy so that gossip about them flourish. People

22 – We Miss You All talked about them in moralistic and judgmental terms. Because HIV is transmitted through sex, it was a popular belief that those infected must have been immoral and promiscuous. This was the time I was first exposed to the stigma associated with HIV and AIDS. The children started by telling me how they had been stigmatised at school, how people were asking questions about whether Chris or I had died of AIDS yet. I also began to notice that a few, not all, of my neighbours were very anxious to move on whenever we met them. Some of them stopped coming to the house. One or two neighbours tried hard to cover their anxiety and supported me in their own way. At the same time, I knew that I too, in my resolve to stand with my head held high, did not make it easy for them. I was beginning to feel the stigma myself. Whenever others did small or big things I felt it was being done deliberately. I expect everybody is exposed to stigma if they are in a situation like the one I was in. Some people don’t understand, and you have to find explanations for the things that happen. So much of stigma comes from inside. People become so sensitive about everything that is said that even those who are being kind are misinterpreted as being nosey. I went straight back to work and began to notice that some of my colleagues, too, were finding it hard to deal with me. I learnt that AIDS was being recognised in the hospital and was being talked about. The Ministry of Health had plans to institute an AIDS Control programme, treating it as an infectious disease. I had been prepared for some of the stigma by Mark and Johnny, my buddies from Hull, who told me the problems faced by gays with AIDS in the world outside Castle Hill Hospital. But I was not prepared for these reactions from my own people. I would walk into the staff room and everyone would suddenly stop chatting, suddenly it was time for everyone to go back to their work on the wards. I knew I was not included in conversations, or people would talk to me in excessively kind tones. I was surprised by this kind of behaviour from fellow health professionals who had access to knowledge and information, and who were trained to behave in a sympathetic manner. If they were unable to deal with me as an ordinary human being, how were they relating to their AIDS patients on the wards? I had to think back to my own training to examine the attitudes I myself had.

Noerine Kaleeba: AIDS in the amily – 23 My Work as a Physiotherapist

In my own career as a physiotherapist, in my work and interaction with my patients, one thing I am sure of is that I was a competent professional. I was given very comprehensive training by my beloved teachers, and my basic upbringing did not allow for a lack of discipline. What I do question now is my treatment of patients as people, as human beings with soul and emotions, not just as numbers to be treated and rehabilitated. I remember working on the trauma and orthopaedic ward during one of the troubled times in Uganda. The whole ward was filled with young men in their 20s who had been shot and were wheelchair bound for life. Young men whose lives had just begun and had been stopped by a bullet. Suddenly they had no plans, no future. I remember, vividly, that sometimes I would come to the ward with the best intentions, to teach someone to get out of bed into a wheelchair, to exercise his arms, expand the muscles of his trunk, so that he could cope with the chair. I would find him in a bad mood. No amount of coaxing or cracking jokes would get him out of bed that day. I would get very angry with this man who did not know what was good for him. I had a job to do. If he preferred to stay in bed for the rest of his life, he could suit himself. The following day, if he was in a better mood I would tease him about the tantrums. I had no perception of his feelings. I couldn’t even begin to appreciate the various emotions he was going through. At other times I would be part of a major ward round. Like teaching hospitals all over the world, these rounds included the consultant, registrars, house officers, interns, a fleet of nursing staff, medical students, nursing students, physiotherapists, occupational therapists and so on. They would congregate around one case and the discussions would go something like this: The consultant asks the registrar, “How is this man getting on?” The registrar looks at the notes made by the intern and house officer. He reports back. “Is he taking his drugs, Sister?” Sister consults the drug chart and reports back. “Is he in pain?” All these questions are asked and answered within the group. Explanations are shared by the group in medical jargon and no effort is made to include the subject of the discussion. Decisions are taken, and orders barked to the juniors: Take

24 – We Miss You All a chest X-ray, change the plaster cast, begin partial weight bearing, give him matooke instead of pasta. Every time someone says something the subject turns in that direction in the hope that he will be asked or given an explanation. In vain. Soon the whole group moves on to the next patient, and as it does so the subject may grab one of the friendly-looking physiotherapy students in search of an explanation. All he may receive is a sympathetic smile, a shrug of shoulders, a promise to return later to answer questions. A promise which doesn’t materialise. If he was lucky he may have received a greeting at the beginning which would have taken the form of “Good morning. How are you?” or “Doctor, how is this man?” This kind of scenario was often described by Chris as the most inhuman part of interacting with people who were supposed to restore patients to full health.

Noerine Kaleeba: AIDS in the amily – 25 ighting in the Open

I felt betrayed by the negative attitudes of those health care workers. It took me time to understand that the emergence of this new disease for which there was scanty information, was causing panic. This panic combined with the fact that the disease was associated with two taboo subjects of sex and death, was the source of this deep stigma. There was an urgent need for clear information about HIV, but also for the fear to be confronted. It became increasingly evident to me that if I was going to fight this disease in any way I would have to fight it in the open. Even Chris’ own father had said that until people recognised that a person had died of AIDS they would continue to call it typhoid or something else. I did not really have a timeframe or a definite plan, or know what strategies I was going to adopt, but the one thing that I was sure of was the decision to remain open. In any case I didn’t really have a choice, because I had already told everyone, when I first received the telex, that Chris had AIDS. I suppose I could have retracted the information if I had really wanted to. I could have said that it was all a mistake, that Chris had cancer or tuberculosis. But I decided, quite instinctively, that I wanted to stick to the truth. It helped me that Chris and I discussed it before I left Hull. I explained to him that I had already told people his diagnosis, and he felt it was the right thing to do. The crucial part was that he didn’t feel that having AIDS was something to be ashamed of. He agreed it would be more helpful if we stuck to our original revelation. I didn’t go around continually telling everyone that Chris had AIDS. However whenever I was asked what the prognosis was, that is whenever anyone gathered the courage to ask me directly, I was able to say that the prognosis was poor, that because it was AIDS, it was only a matter of time before Chris would die. I didn’t really know what to do, but hoped for the best. I was getting information on Chris on a weekly basis, and he was making steady but slow progress. Just before the end of October 1986 I had another message from Hull, this time that Chris was coming home. Either he had been thrown out of England, which I didn’t think was possible, or he had reached a state where he would not benefit from further treatment, which meant that he was coming home to die. I was able to speak to Chris on the phone, and he told me that it was his decision to come home. I was surprised to hear that he was able to

26 – We Miss You All eat, and the people at Castle Hill were going to give him the medication he needed to come home with. He wanted to be home with the family, because he felt that without us life was just bare existence. In these circumstances I couldn’t argue with him about the need to be near excellent medical care. We also badly wanted him to be home with us. I was very excited at the prospect of his coming home, but was also very apprehensive about how he would cope with the stigma I had already experienced. I was counting on his family, his brothers Henry and William and his sister Margaret, who were very supportive. When I told them he was coming home, they agreed it was for the best.

Why I came out in the open

>or several years I was different from almost everyone else in Uganda, willing to share the experience of AIDS in my family. This was for a number of reasons. In the beginning I had already declared Chris’ illness, and couldn’t retract that. I suppose I could have opted not to tell the world, just suffered in the family. But I was increasingly convinced that AIDS was a disease that thrives in secrecy. It was prospering because people were choosing not to talk about it. It was this realisation that provoked me to go wider, beyond my personal circle, beyond the people I worked with. The quieter we keep it the more people it will affect and stigmatise, especially while people believe that AIDS affects some people and not others.

I reasoned that if people could see how it affected us, an ordinary average family, not a poor one, not a rich one, just an ordinary normal young married couple, they would understand the importance of coming out. If it could happen to us, it could happen to anybody. The support that I received after Chris died was in response to my coming out. If I’d covered my head, been miserable and cried, I don’t think I’d be where I am today. But also I wanted to talk about AIDS so that at least my children, and yours, would be spared. They would know and have information about AIDS before they became sexually active, and be able to talk about it. The price I had to pay for coming out, and it was a cost, was very small compared to what I would get by saving the children.

Noerine Kaleeba: AIDS in the amily – 27 Chris with his parents at his return home: October 1986

I can’t describe the atmosphere at the house. The girls were so excited. We decided that we would do some major cleaning and fumigation, as the need for a clean bacteria-free environment for Chris had been stressed while I was in England. The girls and I started scrubbing. We cleaned the whole flat. Every cockroach, every possible source of infection in the house, had to go. I know now this wasn’t necessary because ordinary household hygienic practices are quite adequate for people with HIV, but at the time it made us feel more prepared. By the time he came home the house was as ready as it was ever going to be.

28 – We Miss You All Chris’ Return Home

The day came when Chris returned home, when he actually stepped off the plane, with the assistance of Jan Webster, the nurse from the British Council. I had arranged for an ambulance to be available on the tarmac to receive him, because I didn’t imagine that he would come off the plane walking. When he did it was a tremendous boost for me and for the whole family who were at the airport to meet him. We returned to his parents’ house where a big meal had been organised. A big crowd turned up. The majority had come to sympathise, but there were some who had come to see what a person with AIDS actually looked like. Chris handled the situation brilliantly. He was very excited, and he ate well. There is a photograph of him eating this whole mountain of food and he told me that the food had revived him. After this beginning he was able to eat small amounts of food, although he did vomit intermittently. That day the experience of seeing the children and his family gave him new life.

Chris eating

Noerine Kaleeba: AIDS in the amily – 29 Before Chris came home I had held many discussions with God. I constantly asked him for a miracle, and on that day I felt like God performed a miracle for me. Christopher coming home was like rising from the dead. (rom the hospital bed in Castle Hill to being able to come home was the first miracle that I can recall in the whole terrible experience. I was later to think that there was another miracle, my good health. But the first miracle was when Chris came home, and was able to live with us again, in our home. It was nearly two months before he became ill again. We had arranged that Chris would go straight to the hospital on his return. We expected him to be tired, and to need time to recover his strength under medical supervision before he returned to the house. He was in hospital for only two days, but in that time we were exposed to what it was like to be known to have AIDS in a hospital in Uganda. Despite a private room with the best facilities Mulago Hospital had to offer, I was made aware from the outset of the extreme stigma that existed. Even the nurses were unwilling to come anywhere near him. There were many people in the hospital who knew Chris from his days as a radiographer. There was a large influx of visitors, who mainly came to look at him out of curiosity about AIDS. We had no privacy at all. There was another unpleasant aspect to these visitors. Chris was different from his ex-colleagues in that he had studied and worked hard to advance himself. Most of them had become stuck in their hospital jobs. Their attitude now was to gloat over his misfortune, after all he wasn’t going to make it anyway. Even the doctor Chris had been referred to never came to see him. To the doctor there was no point in wasting time over someone who was dying anyway. Eventually an expatriate surgeon, Wilson Carswell, who was not involved professionally in the case, took over his care through kindness and compassion. I resolved then that, if he fell ill again, I would do everything possible to nurse him at home, rather than take him back to the hospital. After two days he came home, and we were able to live a very close life as a family. It was as if we all knew that the time we had together was very short, so we shared our loads. Chris was physically very ill and a sexual relationship was completely out of the question. During this time I really loved Chris, but it was like a maternal love, a deep caring for him. As a family we were very close and loving. The girls enjoyed his

30 – We Miss You All company. Christine, the baby, always jumped into his bed and wanted to sleep with her daddy. Chris fixed things around the house. The whole month was as fruitful as could be. I was prepared for a long period of illness, so I arranged to go back to work and organised things so that he had everything he would need within easy reach.

Chris coming home

Noerine Kaleeba: AIDS in the amily – 31 The Search for a Cure

On our return home from the hospital the struggle to keep Chris alive started. The whole family joined in, including Chris’ family, my family and friends. A prominent feature of this time was the search for a local cure. Everyone started looking for herbal preparations that they had heard were effective. The biggest problems then were Chris’ lack of appetite, vomiting when he ate solids, and intermittent diarrhoea. He was very thin and had a very itchy skin rash. However, the meningitis had cleared and he wasn’t really in pain, which was a blessing. Chris was a very good patient and laughed and joked a lot with the children. I had access to a pickup vehicle at the time. If I heard that there was a healer in a particular part of Uganda I would drive there and come back with a bottle or jerry can of preparation. I would go from place to place as people heard of effective healers and the healer’s preparations. Relatives were bringing medicines by the jerry can too, and soon there were medicines for wrapping, medicines for sniffing, medicines for drinking at this hour, and so on. If anyone came to the house they would be struck by the long line of jerry cans of medicines, or the refrigerator filled with all kinds of bottles. Chris took all these remedies faithfully, alongside the medicines he had been given in Hull. We really hoped something would come out of all these herbal preparations. Running from one place to the next in search of a cure, the one thing I never succumbed to was witchcraft. This was suggested many times. A traditional healer would be able to tell us precisely why Christopher had got this disease and what to do about it. The only reason I didn’t go was because I am a Christian and therefore opposed to witchcraft. Otherwise, I can assure you, when you are dealing with AIDS you get to the point of desperation, in which even the most deeply felt principles are put to the test. If I had had any doubts, or if I had not been given the information and counselling I needed in England, I might have consulted a traditional healer. I knew Chris had an illness that could be explained scientifically, and it had already done enough damage. I agreed to use the herbal medicines in the hope that they might help his symptoms. It was during this time that we began to think of what we could do about AIDS generally. I started to seek out other people on the wards at Mulago Hospital who had been diagnosed with AIDS. When I met David he was actually nursing his wife, who died a few months later. I

32 – We Miss You All encouraged them to come to the house, just to talk or to share meals. I was away at work a lot and they became regular visitors for Chris. These were the meetings that eventually gave birth to TASO. Chris was the best-informed person about the disease, having done a lot of reading on the subject in England. It was refreshing and supportive for the others to find a person with AIDS who had information and experience of the things that they were just beginning to go through. This companionship provided some of the best times for Chris while he was at home. He felt that he could contribute to the wellbeing of his friends. When we talked about the future, about setting up an organisation, he was very receptive to the idea. He thought he would be strong enough to start an office in town where he could receive people.

I have been exposed to both sides of the coin of HIV infection and AIDS. I was exposed both to the extremes of kindness, compassion and care (as I had experienced in Hull), and to the extremes of stigma, lack of understanding, and rejection in Uganda, by the society in which I lived. This is what prompted me, with a self-support group of people living with AIDS, to begin meeting, using our homes. My home was the first meeting place, even before Chris passed away. After he passed away we felt the need even more for a place for people living with HIV and AIDS to meet, exchange ideas and share emotions.

Noerine Kaleeba: AIDS in the amily – 33 Chris’ inal Illness

Everyday, before going to work, I would make preparations for Chris, so that everything he required was within easy reach. He was a good patient, but at times he would get very bad spells of depression, and then it was difficult for us. He wouldn’t talk for a whole day. Even though I had been prepared for the different moods that are likely to occur when someone is dealing with problems of this magnitude, it was a very difficult time. I tried to deal with the problems as they came up. Sometimes Chris would react to his dependence on me by being irritable. Many women who are nursing their husbands experience this resentment, a natural and understandable emotion. We have to find the courage and patience to deal with it somehow. Chris would sometimes get possessive, not wanting me to go to work, but to remain with him to talk and to be a wife in the house. I recall this vividly because of the day he fell really ill again. I got up in the morning and, as usual, prepared all the things he would need in his room for the day. I thought he was being belligerent, it was the way he said it. I told him I had to go to work. I hadn’t warned the others that I wouldn’t be coming, and my duties wouldn’t be covered. He should have told me the day before if he didn’t want me to go. He insisted that he didn’t want me to go to work, and threw what I thought was a tantrum. He asked how he could get better if he didn’t have somebody constantly to look after him. I replied that we wouldn’t have any money if I didn’t go to work. It was a small domestic quarrel, but it showed the kind of communication failure that can happen when you are caught up in something. After I had arranged everything I went to work. Perhaps I didn’t react with compassion that day. If I had stopped to ask him why he was feeling like that he may have told me that he had had a bad night and that he had a fever. I may have realised how insecure he was feeling. So I went to work and explained to my colleagues that Chris needed me that day. When I came back at lunchtime he was very ill. He was feverish, with a temperature of about 40 degrees, and had collapsed in the bathroom where he had gone to get a wet towel. We had a houseworker, but Chris knew she was afraid of the infection. My sister was also there,

34 – We Miss You All but he was stubborn and wanted to do things for himself. The only people he ever asked to do things for him were one of the children, Betty or Phiona, or me. Even then he worried about infecting the children. He knew intellectually that the virus was not spread through household contact, but he insisted on disposing of his dressings or vomit himself. He cleaned his toilet himself. He was very particular and fussy about these things. He also said that he didn’t want to be a burden to others. I helped him out of the bathroom, took him back to bed, and realised that he was very ill. I gave him some medication and went for a doctor, who said that he had pneumonia and started him on a course of antibiotics. The fever persisted for the next few days. I sent a message to his mother, who came immediately, with his sisters. He started vomiting and complaining of a headache. This was a persistent headache that didn’t respond to painkillers. When he also started having diarrhoea we set up an intravenous drip. I was quite determined to nurse him at home, as far as possible. As a result of our earlier hospital experience I wasn’t happy about the idea of taking him to a hospital. I nursed him for 10 days, but he didn’t get any better, and eventually he started to cough up blood. We realised that he needed a blood transfusion, and there was increasing pressure from the family to take him to the hospital. On the 10th day, I can’t remember the exact date, it was sometime in November, we went to the hospital and he was admitted and transfused with two units of blood, which seemed to revitalise him. His temperature subsided, but the cough and diarrhoea didn’t improve. He grew weaker and weaker. He was in hospital from that time until January 1987, getting worse and worse. On the 23rd of January he died. He died in great pain. A week before meningitis had been confirmed again. He had relapsed. We feared that happening all along, because we knew that the drugs he needed, the drugs that were effective against that kind of meningitis, were not available in Uganda. They were too expensive. I knew when I was told that there was a relapse in the meningitis that the end had come. He was in great pain. I can’t even begin to describe the kind of pain he was in. He had this terrible headache, which lasted for five days. He never lost consciousness. He suffered all that pain, and we felt the pain with him. The children would come into the room and he would ask for

Noerine Kaleeba: AIDS in the amily – 35 a wet towel to be put around his head. Even today my baby Christine, who was barely three at this time, remembers daddy’s headache, and if any one says that they have a headache Christine becomes very anxious. If I have a headache I don’t always tell her, because she has very bad memories of that headache. Our experience with the hospital staff was an uncomfortable and distressing one. They did not know how to help us in a compassionate way and their personal fears and prejudices very evident. The nurses would arrive as a team, on their routine ward rounds, and stand at the door to our room to greet us with their hands held behind their backs, not daring to cross the threshold. I became defensive and reluctant to ask them for anything, because of their manner. Everything, all the nursing, cleaning, feeding, and caring, was done by my mother-in-law, Chris’ sister, my friend Mary, the girls and me. Even when the intravenous fluids needed replacing, or if the canulas needed repositioning, it was up to me to find a doctor to attend to it. Often I would try to do it myself. Soon all the veins were too damaged to take the intravenous canulas. I persuaded the junior doctor to attempt

36 – We Miss You All a cut-down. This is a minor surgical procedure where the skin in the leg is cut and the vein exposed for direct introduction of the canula. The doctor was not experienced in this rare procedure, but Chris was very dehydrated and desperate for fluids. I scurried around to find the cut- down set in the hospital stores. The nurses who should have been assisting were standing at the door watching curiously. One of them made a comment I have never forgotten, “Imagine such a fuss being made about someone who is already nearly dead, a skeleton with AIDS.” All this time Chris was awake and in agony, begging us not to hurt him anymore, promising he would do his best to drink and not vomit. The doctor and I did the cut down, I was reading from a textbook and the doctor was following instructions. This provided Chris with fluids for 48 hours, which was when he died. He died in a lot of pain, and this is something that I cannot take. Even today. I can’t understand why he had so much pain. He had withstood so much, and he could have died peacefully, but he didn’t. He died in a lot of pain. It was too much pain, and afterwards I couldn’t take it any more. I couldn’t take it. I was surrounded by family and had a lot of support, but after the funeral I went away. I was completely devastated. I had known all along that Chris was going to die, but I wasn’t prepared for the way that he died. Such undignified pain and suffering. So I went away, to my mother-in-law, away from the house. I wanted to be near the place where Chris was buried. I was away from home for three weeks.

Sometimes, when I’m talking about these things, like the headache the week Chris died, I relive the moment, and the pain is deep in my bones. I have a feeling that my daughter Elizabeth also responds like this. She would just sit and look at her father, especially when he was in agony, when he was vomiting, when he was so ill.

There is a special thing that happens when vomiting with AIDS. You begin to vomit, and just vomit and vomit forever, even if all the food is finished, you just keep retching. I would hold Chris and hold him, he would go on and on, and then start sweating, until he lay down exhausted. When I think about this, it still brings goose pimples to my skin.

Noerine Kaleeba: AIDS in the amily – 37 Ugandan Daily 23 January 1998

38 – We Miss You All Part II. Tackling AIDS with TASO

AIDS took my man away and since then it has come back many times, taking from my side young men and women, many of whom I have known and worked closely with as we developed TASO. I live with the agonising fears and the question of when, where and how might it come for me.

I have however, opted to live positively with these fears, fight in the open, contribute as much, for as long as I can live, to the fight that will eventually lead to HIV’s defeat. We are all called, therefore, to join in this war.

Keynote Address to the 2nd Workshop on Women and AIDS in Africa, Lagos, Nigeria, May 1990.

Noerine Kaleeba: AIDS in the amily – 39 There is a saying in Uganda:

If a snake comes into your house, do not waste time asking where the snake came from, but kill it first and ask questions later.

40 – We Miss You All After Chris’ death, I had to pick up the pieces and start again. Elizabeth, Phiona and Marion were at school so I gathered up courage and went back to work. I soon discovered that I couldn’t function the same way as before. I couldn’t carry on working as if nothing had happened. (ollowing my experience in England and my afternoon with Jonathan Mann in Geneva, I was going through a profound change in my thinking about HIV and AIDS. I decided I had to concentrate on supporting people living with AIDS who were going through the experience I had gone through. I began to plan for the future. Despite having taken a test, and receiving a negative result, I did not believe that I was free of infection. I first asked God to give me a little more time. I specifically asked God to give me one more year, to see whether I could use that year to do something useful for people living with AIDS.

Early TASO volunteers

Noerine Kaleeba: AIDS in the amily – 41 By this time some of the original people I had contacted had already died of AIDS. I managed to trace David, Jason and Jane, some of the people who had originally met with Chris, and made contact with others who were living with AIDS. We started meeting again, and talking more constructively about starting a support group. At first we met at my house, or in Cheshire Homes, or in my office at the School of Physiotherapy. Initially the group was big, but it fluctuated, becoming bigger and then smaller, bigger and smaller, as members of the group died and new members joined it. Within the first group I was the healthiest. I decided it would not be useful to share the information about my test in England and the negative result with the others. Whenever I was asked, I said that I hadn’t taken a test. This way the group could relate to me better than if they knew that I had had a negative result.

Noerine and colleagues at TASO

42 – We Miss You All Why I chose to live positively

Through all of the years I worked with TASO, I chose to conduct myself as if I were HIV positive. My reasoning was like this: whether the results of an HIV test are positive or negative, we need to behave in a way that neither exposes others to infection nor exposes ourselves to get infected from others. It is not the test results that are important. It’s what we do with the results, how we conduct ourselves – to avoid infection or to spread infection.

Often it crossed my mind that I should take another HIV test. If it came out negative it would reassure my children, but otherwise what difference would it make? Although I’d had the negative blood test in Hull, the fact that I had been exposed to infection made me unwilling to take a second test.

After Chris died there was a lot of talk of my having AIDS. Would I die soon or not? More information was becoming available on HIV. People were learning more about it. Everyone knew that if a man died of AIDS then his wife would die soon after him. It was not a question of whether I would die, but when, as though everyone was waiting for me to die. I hadn’t told people that I had had a test in Hull. I didn’t think it would be useful, and I didn’t think people would believe me. In any case, I had been told that I should have a repeat test to confirm the first one.

In fact the test, even though it was negative, didn’t mean much to me. I didn’t believe the result. Initially I simply didn’t understand what it meant, but later, having learnt a lot about HIV and AIDS, I couldn’t believe that I was genuinely negative.

As I’ll describe later on, the matter eventually came to a head not for medical reasons, but for political ones.

Noerine Kaleeba: AIDS in the amily – 43 At first we met informally, sharing whatever information we had. Then we began to get information from organisations like the Terrence Higgins Trust in the United Kingdom. This went on until we began thinking seriously about starting an organisation of our own. We didn’t know what we would do for money. We were not aware of the possibilities. However, as we reached out to other people who were infected, we found that a lot of the time they didn’t have food, or medicines, or transport to the hospital. Helping to meet these needs began to stand out as an important aspect of starting an organisation. We realised that we would have to obtain government clearance to start an AIDS organisation. In October 1987 I went to Sam Okware, the Director of the AIDS Control Programme (ACP) in the Ministry of Health. I told him about my husband’s having died of AIDS, and of our intentions. He was sceptical about whether I really had the courage to carry the idea through, and discussed the implications of starting an organisation, and the difficulties of getting adequate funding. I said that as an NGO we would look for donations, but we already had a group of committed people. Much to my surprise, he told me to go ahead. He only asked us to go back and write it down, and he would give us the support we needed. A member of our group, David, wrote the ideas down as a proposal, and we received the ACP endorsement. This was a tremendous boost to us because it gave us confidence in what we were doing. Around that time I heard that President Yoweri Museveni was going to set up a national committee on AIDS. I went to him and asked to be included on the committee. He asked why, and I told him about our organisation and the fact that President Museveni, Noerine and the Minister my husband had died of of Health on the occassion of commissioning AIDS. He said, “Oh my God, the Mbale Building

44 – We Miss You All what about you?” I told him I wasn’t sure if I was infected or not, but at this moment it was not a big concern to me. He said, “Put this woman on the committee,” and that was that. At the time, I was the only person on it who had direct contact with AIDS, in the sense of having “AIDS in the family”. The other people were doctors, including an Irish nun named Miriam Duggan who as time went on, was key to the Christian response to AIDS in the country. We were fortunate at this time to meet the Director of ActionAid in Uganda, Colin Williams. I had kept my friends in England informed about my plans for a support group, and our need for funds to begin work. They introduced me to Colin who came to one of our meetings, just to listen. Actually, I had approached a few agencies prior to approaching ActionAid. The reaction from these agencies had been very cautious. They were honest with me. They said that what I was proposing had not been done before, so they didn’t have a model for comparison. (unding and support were therefore a risk that they were not prepared to take at that time. I think that Colin, by coming to a meeting, was able to feel the heartfelt enthusiasm of the group, despite the fact that we were people living with AIDS who didn’t have a guaranteed future. He asked us to prepare a budget proposal and gave us some small support to begin with, promising further support if we could demonstrate what we could do. With this assurance we started getting very involved. Much the same happened with other early supporters, World in Need, and USAID. They came to our assistance as a result of one person from each organisation sitting down and listening to what we were saying. David’s wife died, but he was working as an accountant and therefore was relatively well provided for. He had a car, and I had access to a pickup from Cheshire Homes, so we (David, Jason and I) started using this transport to visit patients in their homes, bring them to hospital, take them home, mobilise people, etc. These demonstrations of kindness increasingly drew people to the small offices we had borrowed from Mulago Hospital. Most of us were still employed in full time jobs, so we worked in the office at weekends, and for part of the day during the week. Doctors who were now seeing patients with AIDS also joined us. We enlisted the support of a physician, Dr Elly Katabira, who is today one of my heroes. We realised the need to give people a professional counselling service, and sought and received sponsorship from ActionAid

Noerine Kaleeba: AIDS in the amily – 45 for Dr Katabira and me to go to the Centre for Advanced Counselling in London. This was my first training in counselling. At this course we were exposed to the basic principles of counselling, and to the methods of setting up an NGO. We formally founded The AIDS Support Organisation (TASO) in 1987 with 16 people, including 12 with AIDS. We wanted the word AIDS in the name, to break the silence and stigma of this disease. At that time people with AIDS were being managed without being told their diagnosis. In some cases the family would be told the diagnosis but without counselling or support. The results were that such families would abandon their loved ones for fear of catching the disease. One of the disturbing features of our start was that within one year all 12 of the founders who had AIDS had died. But in the same year we registered 850 other people who used our services. We accepted people who had been exposed to HIV through their relationships but did not know their HIV status. Some of these people turned out to be HIV negative in the long run, but their survival over the years gave us a continuity that would not have been possible if only people with AIDS had been involved. Many of our members who had not been tested were living positively as I was, but could not face the reality of a test. This was the beginning of TASO. When we began we were just a group of “lunatic” people. We met to talk, to cry, to pray, to share, to let off steam, to give each other courage and hope. Although many of our founding members were practicing Christians we made it a point to concentrate on practical issues in people’s lives regardless of whether they had faith or not. By working together in TASO we managed to prove to the world that it was possible to involve people living with AIDS, people like me who have lost family to AIDS, and other people who have been personally touched, in campaigns against the disease.

46 – We Miss You All The joy and sorrow of working in TASO

I have always had the greatest respect for my friends living with HIV and AIDS, who, despite being ill, in pain and suffering, being stigmatised and ostracised, worked with me in TASO. It hurts me to recall how some of them suffered severe pain towards the end of their lives. That was always the tough part of working with TASO. Yet it was my continued sustenance to see how other people living with AIDS continued to become involved in the work of TASO. One of the joys of working in TASO was to see people come to us in pain and despair, and then see them happier and with hope after being offered counselling, even though they were still suffering physically. Another joy was the recognition of the potential for good in every person, good that can be tapped, stimulated, and encouraged. This became clear in the work TASO did with people in the military. Soldiers, whom we usually think of as having been trained to kill and be brutal, showed great kindness and compassion to others. We even had soldiers working with us in the organisation. They had seen and experienced the difference kindness makes.

Income generating project at TASO

Noerine Kaleeba: AIDS in the amily – 47 Living Positively with AIDS

We adopted as our slogan “Living positively with AIDS’ to emphasise that there is life beyond a positive diagnosis for two main reasons. (irst, at that time the public health messages were saying “Beware of AIDS, AIDS kills”, in other words, “You catch it and you are as good as dead.” There were no messages for those people who were already infected. What was implied was that people who were already infected should die and get it over with. People living with HIV and AIDS were seen as dying. We adopted the slogan “Living positively With AIDS” in direct defiance of that perception. We emphasised living rather than dying with AIDS. Second, we emphasised that, for us, it was the quality rather than the quantity of life that was important. Once infected with a deadly virus like HIV, people needed to take definite steps to enhance the quality of whatever life they had left. They needed to develop a positive attitude to life. As we developed this concept, we defined having a positive attitude as: Z knowing and accepting that they are infected Z knowing and understanding the facts about AIDS Z taking steps to protect others from their infection Z taking care not to expose themselves to further HIV infection or other infections Z taking special care of their physical health, and treating symptoms of ill health as soon as possible Z having access to emotional support Z continued participation in social life Z eating well and avoiding or learning to cope with stressful situations. Nowadays this philosophy seems more obvious. But when we started we had to show that this way of life was attainable. Achieving positive living is a process, with ups and downs, in which we all need support. It is part of working through the various feelings that having HIV may bring: shock, denial, anger, bargaining, acceptance and hope. Counsellors, carers, and friends, need to recognise this instability, and not be frustrated when progression through the stages seems erratic, and people regress to former emotional reactions. We need to be

48 – We Miss You All accompanied through these stages by sensitive, understanding friends who pledge to be there for us.

The TASO slogan, “Living Positively with HIV and AIDS”, addresses everyone in society, infected or non-infected. It calls on HIV positive people to live responsibly with HIV in their blood, and not spread it around, by making the effort not to infect others. It also calls upon people who are infected to look after themselves better, and preserve themselves until a cure comes. It calls to people who are infected to remain actively involved in society, and in social activities within society.

It also calls upon the rest of society to support people living with HIV that they can fulfil their obligations. It calls on those who are not infected, or don’t know whether they are infected, to accept people living with HIV and AIDS, to recognise that they cannot get HIV through casual contact. Acceptance of people living with HIV or AIDS within our community is an important starting point for dealing with the problem.

HIV affects ordinary people: it does not only affect “the poor,” and it does not only affect “the affluent”. It affects a cross-section of people. HIV and AIDS affect you and me.

The starting point for living positively with HIV within our own bodies or within the family, is to know that we have HIV. This information must be given accurately, consistently and sensitively. I believe that people must be told about their HIV status. But a negative test is not the end of the matter. Whether the blood test is negative or positive, people must understand that they have been exposed. After they have been exposed to the virus, and whether infected or not, what is important is that they aren’t exposed again, and that they don’t expose others.

Living positively with AIDS begins with the person getting to know the diagnosis. You can’t begin living positively if you do not know that you are HIV-positive.

Noerine Kaleeba: AIDS in the amily – 49 Next, living positively with AIDS means, people not just knowing but accepting that they are HIV-positive. They must then learn about AIDS, and expose themselves to information about the disease. Some people say, “I don’t want to hear anything about AIDS. I’m infected and that’s enough”. We cannot live positively with AIDS if we don’t have good information about it. There is a lot of stupid talk about AIDS, which may be worrying for those who are positive but don’t know enough about the infection. They put a question mark on themselves every time anything is said. Stupid things, like the idea you can catch HIV by sharing a drinking glass or sitting next to someone who is infected; or discussions about death and dying in which people predict death in two months, or three weeks, for those who are infected. If people living with HIV don’t have reliable information to diffuse these myths against, it is difficult to live positively. Soon after Chris died and I returned from the village, I started to eat obsessively because I was stressed. I would eat anything I could lay my hands on and I became fat. People started to say about me “You know with AIDS, if it’s going to kill you, it first fattens you. Gradually you

50 – We Miss You All become fat and round, and within two months you start to become thin.” Had I not known more about AIDS, that alone would have stressed me and would have caused me a lot of pain. When I checked this kind of information against what I knew scientifically, it didn’t correlate. I knew I was getting fat because I was eating. So I knew that if I went off food I would lose weight

After Chris died I started to eat obsessively. I was reacting to stress, the stress of the stigma, the stress of having to live life without Chris. I was also pushed by the need to show people that I was not sick. I think I was deliberately eating to become fat. To be fat is to be fit and healthy, and I remember constantly, without having to think about it, needing to show that I wasn’t fitting into my clothes anymore, that I had to buy new clothes.

With proper information people will not waste so much time and money going from one traditional healer to another, or from one physician to another. Some of them are unscrupulous. Some posh doctors, without the slightest conscience at all, will tell positive clients that they have typhoid, a disease that is rampant in Uganda and can easily be caught, especially in the cities, by drinking unboiled water. The doctors perpetuate the patients’ visits to them in this way, and make a lot of money for themselves. The patients are themselves more comfortable with the diagnosis, and if the counsellor says anything different from the doctor the counsellor is the bad person – the AIDS prophet of doom. I remember when I first told a friend that I suspected that she was HIV-infected, she was very annoyed and accused me of thinking that everyone had AIDS just because my husband had died of AIDS. That wasn’t fair, but she never came back to say, “I’m sorry you were right”. That was many years ago, but denial and people profiting from it still goes on. During 2001, a member of my family spent a lot of money on treatments for illnesses she didn’t really have. When I started to suspect what was going on, I suggested she have an HIV test. It was positive. The doctor who took her money must have known that she didn’t have typhoid, yet never recommended she get tested for HIV. This kind of behaviour is appalling.

Noerine Kaleeba: AIDS in the amily – 51 People have to know the facts about transmission. Is it safe to hug their children? It is very painful for mothers who know they are HIV- infected. They may stop holding their children; they want to be near them but, because they have the children’s interests at heart, they remove them from their room. Living positively with HIV requires learning about HIV, and coping with stress. This is one side of living positively. It is also very important to take definite steps not to infect others, and ensure that they are not exposed to further infection themselves. This needs to be explained quickly and clearly to people with the infection. Many people think that once a person is infected with HIV they can’t catch other infections.

Personal victory over the virus

It is important to impress upon people that if they don’t pass the HIV infection on to anyone else this will be their personal victory over the virus itself. The virus that they have in their blood cannot outlive them in any other way than to go into another person’s blood. If they allow the virus to move out, they allow it to survive and prosper, even long after they die.

This is the only way the virus lives on. The virus doesn’t want to kill you, because the day it kills you it also dies. This is not in its own interest. It only intends to multiply, but in doing so it kills you. It is only while you remain alive that it can spread. The day you die the virus that is in you is buried with you and is finished.

We had interesting sessions in TASO’s day centres putting this kind of scenario into plays. We found that once people understood the virus in this way by using role-plays, they could see that the virus could also be defeated. At that moment they knew that they couldn’t kill the virus, but they could defeat it.

>or a person like me, such victory over the virus is only a partial victory. The virus had already killed my husband. The only way I can defeat it is by not allowing it to go into anyone else.

52 – We Miss You All Although primary prevention of HIV is rightly the focus of many programmes, it cannot be separated from care and support for people living with HIV. Communities cannot take on the reality of HIV in their midst if there is nothing to offer for those who are sick. You have to provide for their immediate needs. Once people know that they are HIV-infected they need to keep healthy, and one way to do this is by paying close attention to symptoms of ill health. These can be as basic as the need for pain relief, antidiarrhoeal remedies, antibiotics, and antifungal medications. But that brings up the issue of access to care. It’s pointless to talk about treating symptoms as they emerge if there’s nowhere to turn for treatment. This is one of the reasons why TASO also provides medical care. People living with HIV will be ill from time to time, and these illnesses are treatable. To be treated properly they have to be treated early. But where are people to go for treatment? When TASO began, the situation in Uganda was particularly difficult because the health service infrastructure was battered by more than 20 years of civil strife. Today, the system is much improved, and there is a great deal of good work done by NGOs and church groups. But it is still patchy and many regions still don’t have easy access to health services. My home is 40 kilometers from Kampala. Someone who needs hospital care would have to catch a bus into Kampala around ten o’clock in the morning. She would then proceed to Mulago Hospital to see the doctor. By about three o’clock in the afternoon she will have seen the doctor and received a prescription. She will then take the prescription to the pharmacy window, where there will be another line of 100 people. The window closes at 4.30pm. This means she has to come back the next day. If she has a relative in Kampala then she is lucky to have somewhere to stay. The following morning she lines up at the window again. The prescription is for four different medicines, but the hospital pharmacy has just one. So she takes that one and then rushes back home, if the single bus for that day has not yet left. Another essential aspect of positive living is social life. It’s very important to avoid isolating people with HIV. (or instance, during most of my time with TASO, during which I was assumed to be HIV-positive, I was almost never invited to a wedding. If a person is going to continue participating in social activities, society must accept them. If someone arrives at a wedding and everybody turns their heads to look at them, it

Noerine Kaleeba: AIDS in the amily – 53 is very uncomfortable. In TASO, we started having our own weddings. In the day centres, weddings were arranged for people who had been living together and wanted to get married. People were also re-baptised by a priest who came especially to baptise them. These were big functions. They allowed people to have some social interaction and to mark important life events. (ortunately, TASO doesn’t have to do this any more, as Ugandan society has become more accepting and tolerant. Another important celebration, held every year, was the birthday of TASO, which also celebrates all those who were still alive at each birthday. But even if there isn’t a specific occasion to mark, part of positive living is simply to celebrate each day of life as a precious gift, the gifts of health and continued healing, as well as the memories of loved ones no longer with us. As more and more people are living with HIV, the old-fashioned attitude that if you have AIDS you are dead or dying is being thrown out. Given improved care, and a better understanding of the disease, people are living longer and better quality lives.

54 – We Miss You All Clinical Care

While it was clearly urgent that HIV care be integrated into existing health and social services, we in TASO recognised early on that we could not avoid providing some specialised services, including clinical care. At the same time, we knew it was also important to ensure that the emotional needs of people living with HIV and AIDS were met along with health care. We soon organised outpatient clinical care, provided by committed doctors who had expressed an interest in working with AIDS. Although TASO also arranged for them to be trained in counselling, these doctors did not carry out the counselling in the clinic. TASO still provides training called “Orientation to Counselling” for health care workers, not to teach them to counsel but to understand what it is about and when to refer people for counselling. One important lesson we learned early on was that the information provided to the patient by the doctor had to be consistent with that provided by the counsellor. Traditionally patients respect doctors, and believe what they say is important. The patient-doctor relationship is a powerful one. (or this reason TASO impressed upon each counsellor the importance of not misleading patients into thinking he or she was a doctor. This was done in different ways, such as constantly referring to the patient’s doctor in interviews, especially on issues of physical health. Clients know that the counsellors are not doctors, and if the doctor’s and counsellor’s information are different then the client may lose confidence in the counsellor, rather than the doctor. Sensitivity to the role of the doctor may be particularly important when working with doctors who are “traditionalists”, who talk about “my patient” and are resistant to sharing responsibility for the care of the patient. There are many doctors like this. Until all doctors, physicians and surgeons recognise that AIDS care is total care, involving not only the doctor, but also the family, the counsellor, and others, there will be a need for specialised AIDS clinics. (or this reason every TASO facility started to run a referral clinic once or twice a week. This required a doctor, because in most cases the people TASO reached were already ill with a physical complaint. It also required a trained nurse. Once there was a doctor and a nurse, the counsellors could be teachers, housewives or others trained to provide this service.

Noerine Kaleeba: AIDS in the amily – 55 When we first started with TASO we did not register anyone who had not had an HIV test. However, testing facilities were not easily available to many people and tests were expensive. We changed our policy and started registering anyone with a clinical diagnosis, providing a doctor we recognised had diagnosed them. This was an important development, because it meant that people who had specific symptoms of AIDS didn’t have to have an HIV test and wait two or more weeks for the results before they were treated. A clinical diagnosis of AIDS was recognised by the World Health Organisation if patients had particular combinations of specific symptoms associated with AIDS such as weight loss, chronic diarrhoea, long lasting fever, persistent cough, herpes zoster [shingles], oral thrush, swollen glands. When doctors in a referral clinic made a clinical diagnosis, they would advise patients that the chances were very high that they were infected with HIV. A blood test could be made, but the patient would understand that blood has been taken only to confirm the diagnosis. Once these patients were registered with us, we would tell them they needed to establish a support system straightaway and start to live positively. On the medical side, they could start receiving treatment for their opportunistic diseases. After all, the point was not to treat HIV itself but to treat the opportunistic infection that came along with it. Did they have diarrhoea, did they have pneumonia, did they have TB, did they have typhoid? If so, we helped them get treated immediately for that particular condition. Today it’s different. A diagnosis can be made almost immediately using a rapid test for HIV that gives results within half an hour. The whole process of testing has become more efficient and cheaper. However, children born to HIV positive mothers are not usually tested for HIV in routine services until they are over 18 months of age, because they may still be carrying their mother’s HIV antibodies, and tests would not conclusively show whether they were infected. Children of HIV- infected mothers are followed up to monitor development, and any diseases are dealt with in the normal ways as they arise.

56 – We Miss You All Counselling at TASO

People living with HIV must be informed about their infection in a sensitive, consistent manner by someone who knows about HIV and AIDS and cares about people. They need to be helped through the typical shock reactions, and from shock to denial, anger, bargaining, acceptance and hope. They need to be accompanied through these stages by someone who recognises the inevitability of the stages. Someone who will accept and appreciate the anger, even if it is turned on them. Coping with this can be difficult, but has to be done. We have to find ways to help people open up, in creative ways, like using role plays. Otherwise a counsellor can become emotionally burnt out. It was a great relief for me in TASO once Dr. Katabira and I didn’t have to provide all the counselling on our own anymore. By 1990, we had done enough training to have a large group of counsellors, many of them people living with HIV. It was an advantage in TASO that there were people living with HIV among the counsellors. Their participation was very important, although they had different levels of education and understanding. The group of counsellors met regularly once a fortnight, and I did everything possible not to miss these meetings. Because I had chosen to believe I was infected and to live my life as if I were, I was able to understand people living with HIV, empathise with them and live the life they lived, at least emotionally. I am convinced this attitude helped me in my work.

Noerine Kaleeba: AIDS in the amily – 57 Counselling the counsellors

I strongly feel that people doing this kind of work need regular counselling, because issues turn up that you need to share with someone in a counselling situation. HIV counselling does not only address the needs of someone who is ill with AIDS. It also has a lot to do with the emotions that develop from this. New situations constantly arise, even for me today the stigma doesn’t seem to die. You know, sometimes you think that the situation is okay and then something will happen and all of a sudden you find yourself stigmatised in a completely different way from anything you had anticipated. Then you need someone to talk to, someone to carry you through the emotions that arise.

While I was at TASO, I too had a counsellor, Mary Kakeeto. I only went to my counsellor when I had problems. I didn’t go for regular support, as most of the TASO clients did with their counsellor. In this sense I know I under-utilised her. But she was very busy. The counsellor to client ratio at TASO was one to 40, which is very big. She had to cope with that load and also do training. Mary was and is a good friend. She was my matron of honour when I got married, and is godmother to one of the children. She knows the family background and supported me when Chris was dying. She would spend the night in the hospital so I could go home to the children.

During counselling meetings people can share their experiences on how to cope with particular problems. In the early years it was all so new that people were finding their own answers, drawing from inside themselves to work out ways of resolving a problem, or helping someone to resolve a problem. We all found the counselling meetings very useful. We didn’t deal with techniques but with major issues. We allowed people to challenge each other, and at regular meetings everybody was encouraged to point out who was hindering their work. People were quite frank at the meetings, although some people took the criticism deeply, believing that others didn’t like them or blamed them for not doing things.

58 – We Miss You All However, as much as we valued and explained the value of these meetings, there could be problems. One big problem for us was a division between the PLWHA counsellors (peer counsellors, people living with HIV and AIDS) and what we called the “anonymous.” The “anons” were those who haven’t been tested. At one point, the PLWHAs claimed that the anon group didn’t, and couldn’t understand their situation. This was even carried through to clients, who were asked, “Who is your counsellor? Oh that one! They can’t even begin to understand. They learnt their techniques in the classroom not from experience”. It was a bad time, but we had to face this division and deal with it. There were a lot of tears from the anon group who felt under a lot of pressure. It also seemed that some of them really did not appreciate,

Noerine Kaleeba: AIDS in the amily – 59 despite their training, how to recognise different emotions. This is an important point. Those who wish to work with people living with HIV must recognise that the stages of shock, denial, forgiveness, anger, and soon, do not necessarily follow a neat and consistent pattern. (or example, a client you felt you were doing well with, who appeared to have accepted things, would suddenly appear with a newspaper report claiming that those with AB blood group cannot be HIV-positive. The patients decide that they have been given the wrong results, it could not have been theirs, they don’t have HIV, because “their blood group doesn’t catch HIV.” Counsellors should be able to understand why clients react like this, and deal with it. Dealing with HIV and AIDS is very frustrating work. A good counsellor needs some basic knowledge. Good consistent counselling helps people recognise which symptoms are important and which are just anxiety, taking into account the personality of the person with HIV, or without it. Some people are very anxious, and live in perpetual fear of illness. If they haven’t gone to a medical centre for a week they must be dead! (rom the beginning, in TASO’s approach to HIV counselling and care, faith and religion were optional. Spiritual counselling was available, but we wanted everyone, whether they were Muslim, Christian, or atheist, to feel at home in TASO, feel they could come to us. In the original group that set up TASO, most of us were practising Christians who would meet to pray together. Nevertheless, we made a conscious decision to make TASO a non-religious organisation so that it would be open to everyone, and so even non-religious people should find sustenance in it. I am a Catholic and my Christian faith has been a strong pillar of personal support for me. I can share this faith with clients if they want me to, but I keep it to myself unless I feel that the person in front of me is ready to share the Christ that I hold dear. I am very opposed to people who present Christianity as a pre-requisite for help.

60 – We Miss You All ighting in the Closet

Philly Lutaaya meets members of TASO

I appreciated the feeling that people living with HIV don’t want to be exposed, but frequently asked myself, “How can we fight this infection in the closet?” I knew it wasn’t possible. (or almost two years, I was the only person in Uganda who spoke on TV and radio about living with HIV. This changed when a real star, the musician and singer Philly Lutaaya, came out and said he had AIDS. His going public was the watershed, and since then hundreds have gone public, though rarely people from the elite such as politicians or top business people. This has been hugely important in fighting stigma in Uganda, and I am proud of how accepting Ugandan society has become. But it was a lonely struggle in the beginning.

Noerine Kaleeba: AIDS in the amily – 61 Philly Lutaaya

Around the world, youth are a very sensitive group to deal with. We need messages that will reach them, and from early on, videos seemed a good way to do it. The first one done in our part of the world was called “Born in Africa”, and it was about Philly Lutaaya, a very popular Ugandan singer liked by everyone. Once a man like that stood up and said “Look, I have AIDS”’ as he did in the film, it had a tremendous impact on the youth in Uganda. Not that every youth was “converted”, but it helped greatly with awareness and with breaking down stigma. His song “Alone” became a kind of anthem for us in TASO, and for many other AIDS support groups in Uganda and elsewhere. He died of AIDS on the 15th December 1989

Alone

Out there somewhere Alone and frightened Of the darkness The days are long Life is hiding, No more making new contacts No more loving arms Thrown around my neck

Take my hand now I am tired and lonely Give me love, Give me hope Don’t desert me, Don’t reject me All I need is love And understanding.

62 – We Miss You All Chorus: Today it’s me Tomorrow someone else It’s you and me We’ve got to stand up and fight

We’ll shed a light in the fight against AIDS Let’s come on out Let’s stand together, fight AIDS.

In times of joy, In times of sorrow Let’s take a stand and fight on to the end With open heart, Let’s stand up and speak out to the world We’ll save some lives Save the children of the world.

Let’s be open Advise the young ones A new generation To protect and love Hear them singing Playing and laughing Let’s give them everything In truth and love

Take the message Across the frontiers Break the barriers We’ll fight together The doors are open We’ll lead the struggle We won’t lie down in defeat We’ll fight on.

Noerine Kaleeba: AIDS in the amily – 63 People were very happy to come to TASO and receive counselling and fellowship at the Day Centre. Our training workshops at TASO were closed to the public so HIV positive people would speak easily to trainees about their status, about their lives. But it was a problem to get people to speak out in public. If you asked them to come to a conference they’d say, “Yes, I would like to come, as long as I don’t have to speak like you do”. It was not really a problem of stigma for some of them. Some TASO clients had nothing from anybody other than TASO. The organisation rented them a room, gave them food and a job. TASO was these clients’ employer and next of kin, the clients would have been thrown out by their real relatives Yet even these people are reluctant to do TV interviews. They would say, “No. I don’t want my parents, my people to know”. Yet they had already been thrown out by their people, who already knew about them. In the same way, people tried to deny that anybody in the street could spot that they had full-blown AIDS – usually from the weight loss and the facial lesions of Kaposi’s sarcoma or herpes zoster – but the truth was that these manifestations were clearly visible. This is the meaning of the word “stigmata”: marks. Many people living with AIDS would cling to the feeling that AIDS was still confidential, or that they were still invisible. They had such a strong need to make their lives seem normal so they would not have to deal with their sense of shame, their sense of being outside of society. The saddest thing is that by doing that they made the stigma worse, separating themselves from people who could give them love and acceptance. This was and is a terrible thing. You know that people know, even though they are not telling you. You know they will continue to whisper about you as long as you remain closed. And this was my point, which I made as often as I could: the moment you come out the mystery is broken. We have all seen the effect of interrupting someone who is talking about us. When you turn around and say, “Are you talking about me? I see you are talking about this hump I have on my back,” you rob them of the joy of discussing the issue behind your back. They won’t talk about you then. I explained to people living with AIDS that once you are open, you diffuse a lot of your anxiety. The perpetual anxiety of wondering who is talking about you, who is getting to know you have the infection, whether people know, what they are saying, is very debilitating. (ortunately I didn’t have that particular problem because I

64 – We Miss You All had told people before I realised what I was letting myself in for, even before I returned from England. Once I returned, I could have retracted the news. I could have said it was a mistake. As a counsellor I see this happen every day. Sometimes, when counselling a husband or wife, I ask how the spouse has been, how are they coping. They say they will be better soon, the treatment is working. When I ask “Do you suspect that they may be infected?” they ask “Is that what you think? Is that what you say?” Each of these people, I am 100% sure, knows their partner is positive. I wish it was possible to impress upon people the need to make a commitment in the fight against HIV, the need to give HIV a face. One way to deal with HIV stigma is to relate it to other stigmas, like racism or disability. I related the stigma to my own experience with people with disabilities in the Cheshire Homes. My exposure to, and my interaction with, those young men and women with disabilities, or whatever, seeing how they coped, how they stood up to stigma, and how they really had to work hard to do it, was important for me in working with people living with HIV. One of these young men was George Makombe. He was paralysed when he was young, from polio. He lived in a wheelchair, but he did O levels, A levels, and a university degree. When I was feeling very sorry for myself, after Chris had died, George came to the house and said, “Noerine, I think you better fight it. You have two legs. You have two arms. You have brains. You have children. I don’t have children at all. Every morning I go to work, I’m still paralysed, I’m still incontinent.” His words really shook me up. After we had talked for a long time, I looked at my own situation again. Looking at George’s experience and determination helped me to reinforce my own determination to do something about AIDS. It is very useful to relate HIV to other kinds of stigma. It even had implications for the way we developed TASO. George worked with TASO as a volunteer. He had been trained in counselling, as an “anon’. As has been noted “anonymous” was our word for those who have not been tested; they may or may not have been HIV-positive. As the 1990s progressed, and testing became easier and more widespread in Uganda, TASO stopped making this distinction. George was not, however, a fulltime counsellor because he had a job as a trainee accountant. On Sundays he would visit people living with AIDS, especially those that

Noerine Kaleeba: AIDS in the amily – 65 were lying in bed feeling sorry for themselves. This was his special asset. He’d wheel himself in and say, “I’ve come to see you. Are you getting up? Do you know that I’ve been paralysed for this long. I live in a Cheshire Home. I have a family but they wouldn’t take me in”. That kind of thing. When you are dealing with the AIDS stigma you don’t think there are any other kinds of stigma. This is especially so because the AIDS stigma comes a lot from the inside. You are so conscious of your status that even people who are just being kind are misinterpreted as nosey. But stigma does exist. It’s all pointing fingers, blaming and shaming. Even though in some countries in Africa we have laws that protect against discrimination, for instance in workplaces, people are discriminated against. But even when these laws are known, people can’t go to court because they don’t want to disclose their status because they are afraid of what will happen to them. People have their property thrown out of their houses because they have been discovered to be HIV-positive. This has happened in Uganda, in the city. It’s not that people are physically thrown out, but the landlord gets to know that you are infected and the next thing he does is try to get the house back. The infected people may say they can still pay the rent, but the landlords insist that they don’t want the rent, they want the house.

66 – We Miss You All Coming Out and Denial

People take it for granted that I am constantly in a good mood, that I constantly want to talk about AIDS. Even if I stop at the petrol station to fill up they say: “Now what is AIDS? What is the latest about AIDS? What have you got for us? Where are the medicines?” That kind of thing. Well, it’s not true. There are days when I just don’t want to talk about it. There are times when I feel that it’s unfair. Sometimes when I look at people who haven’t been affected, or go to church and see couples coming in with their families, mother, father and children, I feel so angry, so cheated, and I must ask, “Why me God?”

We try to protect our privacy by not coming out, and by not declaring our HIV status. This is one way. Our status is not written on our foreheads, although as I mentioned earlier, full-blown AIDS is hard to hide. However, there is a need to balance the advantage of privacy against the disadvantage of the anxiety of others finding out. Some high-ranking people have even succumbed to blackmail from people who know their HIV status. Yet they are dealing with an infection that can’t be kept quiet forever. When it flares up, there will be nothing that they can do to stop it. The mind plays a very big part in how we deal with an infection like HIV. Until I had my confirming test in 1995, I lived in perpetual fear that I might become ill with AIDS. What I feared most were the manifestations of HIV infection, particularly acute herpes zoster and meningitis because they are such painful conditions. I lived in fear of that terrible pain that Chris had. Wherever I went I travelled with a course of acyclovir, an antiviral drug used for herpes infections, especially if I was going away from home for a bit. I feared the infection and pain. I carried the drug with me so the moment that I saw a rash I could use it straight away. We kept a stock of it in TASO all the time. People used it as soon as they got a rash. If you start immediately it dries up within two days, and it stops the rash from getting infected. However, we never had enough because it used to be expensive. In fact, it took up so much of our budget that we didn’t use it for anything but genital herpes.

Noerine Kaleeba: AIDS in the amily – 67 Even though we feared AIDS like this, I always thought we needed to come out in the open with it. A lot of people could come out without too many repercussions, I argued. Seriously speaking, what could the repercussions be? True, it could mean being thrown out of a job, or losing friends –but with full blown AIDS, depending on what firm they have been working for, they would have already lost their jobs. They already required help for basic needs. People would already be talking about them.

I have always felt strongly about the rights of people living with HIV, but we must accompany this with responsibilities. If it is my right to keep my job, it is also my responsibility that my job be done properly. Employers in Uganda are being sensitised more and more to allowing people living with HIV and AIDS to remain at their job, but the ongoing debate is the issue of productivity and production. It’s all right if somebody is doing a job that can be done by someone else if they are not there, but production managers have factory quotas and targets to meet which cannot be met if some people on the production line are off sick a lot of the time. The issues have to be balanced.

I remember counselling a friend who had recently been diagnosed as having AIDS. She was a policewoman, and had been working far from home. She was already ill, not just HIV-positive, so living so far away from home and being a policewoman wouldn’t enhance positive living. I suggested to her that she seek compassionate leave, and think about moving, even coming to work with us. TASO belongs to its members, it would be family for her. She insisted that she didn’t look that bad, that people from her workplace would not know that she had HIV. But these people from work were the ones who had actually brought her from her station back to her home, and she was saying that they didn’t know. I found myself becoming a little impatient with her, more so because I didn’t have much time to sit with her. It’s very hard for a person in my position to understand this behaviour. I get very frustrated, but I do understand. This lack of openness was and is a big stumbling block to the fight against AIDS. We can’t fight AIDS in the closet.

68 – We Miss You All Love Carefully

As we began at TASO, AIDS was becoming recognised as a danger throughout the world. People were beginning to react, to begin initiatives to respond to the epidemic. A lot of these initiatives were geared to prevention. This was a good thing because, in the absence of a cure, prevention is the better way to fight this illness. The public health messages that were being used then had a serious shortcoming. They all said “Don’t catch AIDS, if you do you’ll die” or “Beware. Don’t catch AIDS. AIDS KILLS.” One popular slogan used in AIDS control in Uganda was “Love Carefully,” or the church slogan “Love (aithfully.” The campaign based on this slogan contributed to the stigma associated with AIDS by relating it to low morals and death. But the very phrase “love carefully” implies that the person with HIV has loved carelessly, even if this is not said directly. It implies that people living with HIV have somehow deliberately gone out of their way to get infected, rather than avoid it. These slogans were coming at people in Uganda left, right and centre, as part of a massive campaign begun in 1986. The messages were all the same. There was nothing for the person who was already positive and diagnosed with HIV infection. As a result of these early messages many people living with HIV and AIDS reacted adversely. We at TASO had to really struggle to keep going, not only with the physical illness in our family but also with the mental torture and torment of these people. It has been argued that it was necessary to use messages that would shock people into realising the seriousness of the AIDS problem. But the “Love Carefully” campaign, stigmatised people with HIV. It said look these are the people who have loved carelessly. This may be particularly stigmatising in a society like Uganda which is almost 90% Christian. The Christian stress on moral values, even speaking against polygamy, can contribute to stigma in this situation. Although interestingly, when Uganda was introduced to slogans with different messages a year later, they came from a church hospital programme in Zambia, from Chikankata Hospital. These were slogans like “You can’t catch HIV through casual contact” and “Be compassionate to a person who has AIDS” and “Be friends,” that kind of thing. These slogans came a little too late; the original one had already taken root. TASO began as

Noerine Kaleeba: AIDS in the amily – 69 an organisation which would provide counselling and support facilities for people living with HIV, and preventive counselling for families and communities. It aimed at impressing upon people in the community, especially at the grassroots, that the person living with HIV or AIDS is not dangerous. They need our compassion, our concerted effort to be supportive. We need to be in a joint fight against the disease. The emphasis is on positive living.

70 – We Miss You All Traditional Versus Modern: Polygamy as I Grew up with it

To understand the complexity of the HIV situation in an African country like Uganda, you have to understand the way relationships between men and women work there. I am not an expert in how things work in other parts of the world, but I know that African women and men are in the middle of huge social changes, and it is not easy to resolve the traditional past with the rapidly changing present. There are many traditional practices that are in direct confrontation with the HIV messages that we are giving. Culture and traditional practices are things that have been passed on from generation to generation, and we can’t confront them directly by going to the people and saying “Stop, or you must perish.” A better strategy is to educate them to realise that what they lose by no longer following a traditional practice is much less than the risk they run of contracting HIV. This is a gradual process. A particular example in Uganda is male polygamy. My father had eight wives at different times, and my mother married him, as a fourth wife, at the age of 14. She was given to my father after a wife had died in childbirth. She was so young that one of the other wives came to the main house to help her. She often says that she was actually brought up by her co-wife. My parents were married in the Catholic Church, although my father had kept all other wives as traditional wives in separate compounds. My father was a chief, and affluent man, who always went to church. It was considered proper for him to have a Church-wedded wife, but my mother was the only one he married in a church. I grew up in a large family of four wives. Two others had died before I was born and I never knew them. I grew up, therefore, knowing and accepting the idea of male polygamy. Chris’ father too had four wives. The idea of polygamy was not foreign to us, and Chris and I discussed it from time to time. We had a very nice childhood by our standards, even though many of my brothers and sisters didn’t stay at school long. My mother and two other wives stayed in the main house, the others all had their own homes. We each knew who our own mothers were, but we could go and sleep at each other’s house whenever we wanted to. I remember that

Noerine Kaleeba: AIDS in the amily – 71 we ate at each other’s houses after school and our mothers never had to worry whether we had not eaten. There were a total of 28 children in the family, including my father’s adopted children. In my tribe there is a ritual where two men, if they loved each other, would cut their arms and then hold the cuts against each other to make them blood brothers. After this, if either of them dies the other would adopt all his children and his wife. If in the ritual they said that all that is mine is yours, this agreement, for inheritance purposes, would even supersede the claims of actual blood relatives. This was how some of my father’s wives were inherited. When we grew up we were very careful never to discriminate between blood relatives and adopted relatives. I think this blood brother tradition has died down now, and I don’t think anyone in my generation has practiced it, but in my father’s generation it was very common. My father lived in the rural areas about 50 kilometers from Kampala. The houses of his wives were scattered within the same village location, not far from each other. My father had a motorcycle and he could easily move from one to the other, even in the same night if he wanted to. The interesting thing is that I never once saw him either coming or going from my mother’s bedroom. They were so secretive, we could even imagine that we were heaven-sent since we never knew our parents to be in the same bedroom. I can’t even imagine how he moved around, but he did because we were certainly his children. In polygamous relationships it was assumed that women would not have their own sexual demands. If they did have affairs they were not talked about, so it’s hard to know what happened. My father was quite old, about 50 years old when I was born, and my mother was much younger. Some of his wives would have been older, and would have stopped having children. Once a woman had passed through menopause, when she could no longer have babies, there wasn’t considered to be any reason for her to continue being sexually active. This was very unfortunate if the woman is quite young when she has her menopause.

72 – We Miss You All Loving aithfully: Where does it Start?

With the spread of Christianity, and the education of women, some women now have more say in the house. They are not as accepting as they had to be in the past. In this changed situation one of the first things the woman says is, “If I ever catch you with another woman, I’ll kill you.” The man really loves his wife, and he doesn’t want to offend her. He knows that she is serious, and that she will kill him. At the same time polygamy hasn’t left him, it’s only suppressed by the circumstances and will remain so for as long as they are happy. Let me describe one possible scenario in this kind of relationship. Something happens at home, the husband and wife have a quarrel in the night and he wakes up and goes to the office in a bad mood. There, he finds someone of lower status in the office who is nice and kind and is looking for a man. He sees this seemingly happier person. A relationship begins to develop, but one of the first things he says to the girl is, “ Look, I have a wife, and I don’t want her to know about this relationship,” and she accepts it. Inevitably the girl is of a lower social class, and values this access to the boss, so the relationship builds. He doesn’t go to her often, he goes there when there is a quarrel in the house. Soon the girl feels very elevated. She has the boss, this highly educated person, and she might decide to have a child. The child remains in the background, the girl knows he has a wife, and agrees to remain in the secondary role, not make any noise, but she’s not really happy, she also wants a man of her own. So another relationship starts for her. She meets a man who sympathises with her because her boss treats her badly and only visits her when he feels like it. The new man says he would be available whenever she wants him. So he comes into the relationship, understanding that her boss visits her every Saturday. Every Saturday he makes himself scarce. She is a kept woman, and kept by more than one man. Then, perhaps, the new man has another contact somewhere, and so it goes on. This happens in the majority of marriages that I know. I know many “big men” in this situation, with not one but two or three other women. This man we are talking about is a busy man. Not only does he have a family and children to take care of, but he has a job, which sometime takes him to Vienna or the US, or wherever. I was talking to a man in

Noerine Kaleeba: AIDS in the amily – 73 this kind of situation, with four women (his wife and three others). He was scared about AIDS. What could he do now? All these women have his children. He said to me, “But my situation is not so bad because I don’t go to these women often.” He was willing me to endorse his feeling that he was not at high risk because he didn’t visit them often, only once a month. Most of the time he spent with his wife. But these were his children. He had a real dilemma. Wasn’t it too late? So he said, “When you say ‘love faithfully’, where do I start?” If we tell men who already have a number of stable partners to love faithfully, what will happen to the other women? What are we giving the others who are not the ones to be loved faithfully? What are we putting in place of the man they have been depending on? We tell him, stick to one partner, but which partner? The one he married in Church? What are the criteria? Why should he choose this one? What are the factors that took him away from the first wife in the first place? We don’t know. If we are saying stick to this one, are we saying that the attraction for the others is completely severed, and that he wont be attracted to another person? To make the situation more complicated, traditional practice has anyway become very confused because of Christianity, affluence, education, and so on. Wives used to respect each other and actually formed a very tight group. Today a woman, because of affluence, Christianity, or education, tells her husband when she marry that she will not allow another woman in his life. When he finds one, the lies begin. This is the kind of situation that is bringing problems. Women say they are happy to remain behind doors, but they aren’t and so they look for somebody else who will not keep them behind doors, who will promise to be their own, and the chain continues.

74 – We Miss You All Talking About Sex

AIDS has brought two major taboos – death and sex – to the dining table.

Most women find it difficult to begin a discussion about AIDS in the home even now, but back then it was just about impossible. One option that we in TASO gave women was to bring up the subject at an opportune moment, for example as they sat around the table after eating – not in the context of sex. At a first interview we provided people with pamphlets to take home with them. Using these pamphlets people could introduce the subject casually – “You know what, I was in the clinic and there’s all this information about AIDS” – and then begin to talk about it. (rom this discussion condoms could be introduced: “It’s said that condoms can also protect against HIV infection.”

Noerine Kaleeba: AIDS in the amily – 75 Quite a few things not usually discussed could be raised, depending on how they were brought up. I remember going back to the School of Physiotherapy to talk about HIV. I asked the women how many of them had ever discussed HIV with their husbands. Almost none had done so, and those who had tried to discuss it had done so in a negative way. They accused, “You, John, you really are moving around too much. You are going to bring AIDS into this house.” When you bring the subject up in that way you know it will lead to a quarrel. I suggested that they use the TASO pamphlet and introduce the subject as if they were just sharing their day’s experiences. Depending on how the husband responded, they could then ask, “Have you ever used a condom? The impression I got at the clinic was that these people were really serious about their campaign. They actually gave me condoms. Why don’t we try them? Let’s try them tonight and see what happens?” Bring it up as a joke, depending on the mood of their partner. (or some women, even though they are married, there’s no joking about sex. If there’s going to be sex, you will just jump into bed. In a situation like that you can’t just raise the subject. There are exceptional families where safer sex can be discussed and remain between the two of them, but generally, if the man has not agreed to use condoms they can’t discuss the matter further. In my situation I could have introduced a condom. We didn’t use condoms often because Chris didn’t like them at all. But I think that if I had insisted he would have used them. We women know what tricks work with our partners. We know where their soft spots are. We know this, but we don’t use it to our advantage because we resent being the one to have to please him all the time. But with HIV we have to, especially when we live in cultures where men control sex. Particular groups of women may have a particularly difficult task introducing condoms. Second and third wives, for instance, must try very hard to please their man when he only comes to them once a month. How can you present a condom in this situation, when he’s visiting once a month? You can’t. If the woman believes that this situation is right, she will not change no matter how long you talk with her. She will not speak up to a man, belittle him. She may believe that he should make the decisions. In fact, some women with HIV say that they have nothing to worry about because they got the virus from their husbands. Everybody in the

76 – We Miss You All village knows she is a faithful wife, she is happy and content that she got it from her husband. The fact that you have a fatal illness doesn’t come into it. People tell me I am lucky, because even if I fell sick everybody would know where I got it from. The whole world knows that I got it from my husband. That’s the judgmental part of it. In my culture, once a woman is married to a man she has to have sex with him when he wants it. The only way a woman can remain married in the same house is if she has sex when he wants, the way he wants it. She can’t negotiate for safer sex. She can’t say that she feels frightened, unsure about him, or ask him to use a condom. The moment she asks that, he turns on her, thinking that she has been up to something. A woman doesn’t dare bring up the subject. Even if you turn to your mother, and return to her beaten and swollen saying you won’t go back to your husband because you refuse to sleep with him, she will tell you to go home, to get out. A woman can’t win, and no legislation will change things until women have won men over to their side. Some things will be more acceptable if they are presented differently. We need to educate and sensitise people first. These were issues I discussed with women who came to TASO asking for an HIV test and which, 15 years later, I still discuss when I am in my counselling role. When I asked them why they wanted a test, they said they suspected their husband was seeing other women. They said that if they were negative they will leave him. How sure is she? Even if she ignores her own sexual needs, what about her financial situation? How many children does she have? What would happen to them if she left her husband? Would he keep the children, take responsibility for them? Sometimes he would turn out both the wife and the children. I asked them what were they planning to do. They often said they would look for another man who would be faithful to them. In an environment like Uganda you have to ask whether she has actually seen such a man. Generally, such women haven’t. They are fantasising. They needed to think about the fact that they wouldn’t know whether any other man they became involved with was infected or not, even if he seems to be faithful to them. Even when they see their neighbour walking hand in hand with his wife, they are just hoping that he doesn’t go around with other women. Counsellors are trained not to give advice, rather to guide a client to work through the different facets of their problem. In this counselling situation, a counsellor will send the

Noerine Kaleeba: AIDS in the amily – 77 woman away to think further about the decision. If there is no other reason for the woman to have a blood test, then she should think about whether she really wants to be tested. Many such women will decide, after thinking about it hard, that they don’t really want it. In our culture there seems to be an assumption that women only have sex for babies or to please men. (or example, it seems to be taken for granted that once women reach menopause, and can no longer have babies, they don’t need sex. I don’t think women only have sex for babies or to please men. Sex is a natural human desire, and has nothing to do with babies. (or me the desire for sex is really associated with circumstances. When Chris was in England I knew that he would come back. If I wanted to have sex I would close my eyes and think of the day when he would come back, and how it would be. After he fell sick and I knew I wasn’t going to have sex, I thought less about it. Then, for a long time following his death, any feelings of desire that came to me (and they did, inevitably for a healthy woman in her 30s) weren’t acted on because in my mind I associated sex with HIV. That has slowly changed, but it is still a bit of a wall in my personal life.

78 – We Miss You All When one partner is positive, the other negative

In counselling partners who test negative when the spouse has tested positive, I have yet to find someone who feels any happiness about this difference between them. >or many people in this situation it means more problems, including guilt at being alright when he’s suffering, when he’s ill and in pain. You feel that you should be sharing the pain.

It also brings up another tough issue: A person living with HIV or AIDS also has the right to have sex. This is a matter for which counselling is crucial. If clients with HIV come to me saying that they would like to have sex my first response is that it’s their right. But my role as a counsellor demands that if a third person – the partner – is brought into the discussion, I must sit down with them and ask a number of questions: Are they infected? Are they uninfected? Do they know that their partner has HIV?

What will be the eventual outcome? If the HIV-positive person is female, are they planning on having babies? They have a right to have a baby. It’s their decision, but they need information and support to make an informed decision. I explain what we know scientifically about the risks, about transmission of infection from the mother to the baby, what it is like to have a child with AIDS. If she still wants to take the chance of having a child it is her decision and not up to me to talk her out of it. She will make up her own mind anyway and I want her to feel we are there to support her, not to condemn her.

Noerine Kaleeba: AIDS in the amily – 79 Teenage Sexuality

Before I met Chris, when I was about 20 years old and at the School of Physiotherapy, I had an affair with a man in his 40s who was a friend of my older brother and my father. Right from the outset he told me he would marry me and would therefore protect me from pregnancy until I finished at the School. I soon realised that my brother and father approved of this arrangement. Although I knew that he was already married, and in fact had two wives, the prospect did not alarm me. Being taken as a third wife, however, was not what I wanted out of life. So while I enjoyed his attentions and gifts, I was always looking for a younger man whom I could love and marry in church. Even so I was infatuated by this man. If he hadn’t been married I would have married him. I had just started my first year at the School of Physiotherapy and I was very flattered by his attentions. He would take his wife home at 5 o’clock, and then come back for me in his Benz. We would go out to eat, and he would buy me clothes and expensive presents. My only regret was that I couldn’t show him off to my friends. At boarding school, at about 18, the nuns taught us that sex led to pregnancy, and that there were several different methods of contraception that could be used, including condoms. So when my friend suggested sex to me, I told him I was afraid of getting pregnant. He told me he would look after me, he would protect me because he was interested in my affairs and wanted me to finish at the School. I knew he wouldn’t let me get pregnant because of his friendship with my brother and father. He had gone home to tell my father that he wanted to marry me. My father had agreed but said that I needed to finish my education first, because I was bright and needed a profession. Although people say that men in Africa are not familiar with condoms, men of the world like my friend used condoms at that time, especially if they had families and were afraid of taking home an STI after going with prostitutes, or being troubled by young girls turning up on the doorstep with a baby. My friend also respected his wife too much to do that. He would never meet me openly, so we couldn’t go dancing in case we met someone who knew them. We always went to drive-in cinemas or something like that. That’s why I wanted to find my own man, my own marriage. So many young girls fall into the trap of going out with older men who “look after them”, as I did. They end up either pregnant or with HIV, and

80 – We Miss You All thrown out of the home. If any one of my daughters had told me that she was having an affair like mine while she was still young, I would have found the man and killed him! I once asked my friend how he would react. He said he would kill the man who did with his daughter what he did with me! The situation is, of course, much worse now with HIV. Girls can end up both pregnant and HIV-positive when they first start having sex, and it is an added tragedy to have unintended pregnancies with HIV. The main way to prevent children being born HIV-positive is first to prevent HIV in young women, but also to prevent unintended pregnancy. My early experience is probably why I feel that we need to give our children information. It is important to talk to them about sex. I never had any talks with my mother about sex. I had a talk with my paternal aunts, who traditionally give sex education to girls, but it’s not very constructive – just that if you have sex you get pregnant, that’s all. I think we need to explain to our children that sex is healthy, that the feelings they have about sex are normal, natural, and can be expressed without putting yourself at risk. They have to know exactly what the risks are. The most important risk is HIV infection, but second to that is unwanted pregnancy. When I talk to young people, I try to simply give the facts about sex and contraception, what protects against pregnancy and what protects against HIV. I don’t give advice, partly because of the counsellor instinct in me, but also because teenagers don’t take advice easily. They listen and pick out what they need. What is important is that they receive straightforward, not distorted, information. I had long been convinced that in order for young people to be able to protect themselves from HIV, other sexually transmitted infections, and unwanted pregnancies, they need four things: 1. access to accurate information on sexual issues 2. skills to negotiate situations 3. practical and realistic options to choose from 4. support and encouragement to maintain the course of action they choose. Teenagers get a lot of their information from each other. Sometimes you go to tell them something, or to explain something, and you find they have already discussed it between themselves and know all about it. That is another reason why they need access to accurate information to pass around, through what programmes call peer counselling or peer facilitation.

Noerine Kaleeba: AIDS in the amily – 81 Talking to my Own Children About Sex

Although I have often boasted (oh, the sin of pride!) about the open, honest relationship that exists between the girls and me, the issue of sex education has not been easy. My early, timid efforts were not a shining success. As a frontline AIDS activist, I assumed that I should be able to manage it. But as an African woman, with all the baggage of taboos regarding talking about sex, it proved the hardest of tasks. Actually, in talking with women from other cultures, from the most industrialised countries to the poorest ones, I have found this to be true for almost all mothers. In the hustle and bustle of getting TASO off the ground it dawned on me that both Elizabeth and Phiona were now attractive, popular teenagers and that they might soon become sexually active. My first strategy was to expose them to TASO’s work and all the basic information that was being generated about AIDS. I hoped this exposure would help them to fear the virus while learning to love and care for people living with it. To a great extent, that was what happened. But it still didn’t address MY problem of talking to them directly. One day, I brought a box of condoms and left it in the girls’ bedroom, hoping that they would use them if they needed to, but at the same time praying that they would not. I was tempted several times to check the box to see if its contents were decreasing but never had the courage to look (oh, sin of cowardice!). It was not until Elizabeth actually broke the ice by inquiring as to who had placed the box in their room that I owned up. We finally had a discussion, which I survived by clicking into counsellor mode – almost as if this was a client rather than my daughter. In any case, Elizabeth assured me that she had already learned something about condom use in school and from talking with friends, and if she needed them she would know where to find them. This experience showed me that even when we are involved in this work we need help with our own families when it comes to discussing these sensitive issues. Every parent will choose to believe that their child is not yet sexually active and would want to wait for that time before providing the support the child needs for protection. This, despite the fact that we all know that we did not tell our parents the first time we became sexually active!

82 – We Miss You All Above all, the truth

Some of the information we received from our elders was just lies. Stories to scare us away from sex. >or example, if you sleep with a boy you wake up in the morning with a tree growing over your head, or if you sleep with a boy he damages you so badly that you smell forever – you get infected and you go around smelling. That was my early understanding of sex, until I went to school and learnt better. So let us tell our children the truth, and then hope for the best.

Noerine Kaleeba: AIDS in the amily – 83 Sexually Transmitted Infections and HIV

The stigma attached to HIV and AIDS is associated both with it being sexually transmitted and fatal, i.e., leading to death. But AIDS has been treated quite differently in terms of stigma from other sexually transmitted infections (STIs). It is now being reported that STIs in Uganda are decreasing. (ewer people seem to be going to clinics or private doctors for STI treatment. This is a good thing, as STIs seem to have a lot to do with HIV transmission in Africa The issue of STIS leads to great deal of stigma now, although historically they have been common in Uganda and not stigmatised. This was especially after the Second World War. At that time many men returned with syphilis and gonorrhoea, and made a point of bragging about it. They were not stigmatised. In fact when the king of the Buganda, the biggest tribal group in Uganda, caught syphilis and gonorrhoea, and it became a point of pride for a man to have syphilis. In a group of men telling stories about how much exposure they had, you were less of a man if you had no story to share. So long as these STIs could be cured, people could afford to brag about them. They only had to go to the clinic and get a shot. Even then, this boasting applied only to men. STIs were very shameful for women. Men brag about STIs, but who were they supposed to have got them from, who would they give them to? This example highlights the position of women in Uganda, even in Africa as a whole. Even today men turn up at STI clinics more quickly for treatment than women, who will suffer for a long time before they gather courage to come to an STI or gynaecology clinic. This has a big bearing on HIV infection: men come forward but women don’t. Promiscuity in Uganda is only understood in the context of women. A man can be promiscuous without being labelled as such. A man with multiple sexual partners is just a strong man, but a woman with multiple partners is promiscuous. The issues around STIs are the same issues around HIV transmission. Today it is not a question of promiscuity; it’s just a question of sex. The level of infection in Uganda is such that every time you have unprotected sexual intercourse you are exposing yourself. Certainly most clients I talked to while I was with TASO said nothing to make me suspect that they even knew what promiscuity meant. They were just

84 – We Miss You All ordinary people who had had a sexual encounter with someone who happened to be infected, and they therefore became infected too. Prostitution in Uganda is not easily identified, because it is illegal and people will not identify themselves or others. Quite a few people sell sex for money, but many of them are also engaged in other activities. Some women set themselves up in a small house in a slum area and sell local brew and sex. I worked with two sex workers when we first started TASO. But even then they could not admit, even in counselling and despite TASO’s approach of welcoming everyone who needed us, that they were sex workers. Until I started working internationally, these two were the only women I had met who sold sex for a living. Outreach to sex workers is a very important part of HIV work because these women are so vulnerable to the virus, but not enough of this work is done.

Noerine introducing condoms

Noerine Kaleeba: AIDS in the amily – 85 Inheritance and Other Laws

Chris did leave a will, but it did not say much. As is the tradition, he left all matters to do with the children and me in the hands of his brothers and fathers. He didn’t say, “Noerine, you take care of the children”. He said to my brother-in-law, “William, you take care of my family”. In my tribe I am not expected to marry my husband’s brother as is the tradition with other tribes, but the family expected me to remain a widow, and for William to buy food, clothing, and other things, for us. The problem was, William couldn’t really do that. He was a lecturer, and what he earned was no different from what I earned as a physiotherapist. He was very nice, but he had a family of his own to look after, and at that time was struggling to make ends meet. However well intentioned he was, it was impossible for him to provide for us as well. Even worse, because of the inheritance laws in Uganda and because I didn’t have a son, William inherited all of our property after Chris died. The minute a woman marries, her family ceases to exist. This law may change soon, I think legislation is slowly making its way through the government, but it has taken a long, long time. Chris was confident that his family wouldn’t take our household property. They didn’t take chairs and beds and tables. They didn’t even take his clothes – in fact, the girls wore them for a long time till we came to Europe where they discovered new fashions. But I was worried by the situation, especially the issue of our house. (or much of our married life, Chris and I and the girls lived in cheap accommodation provided for civil servants like him. It was while Chris was in England that we decided to build a house. After he had been away for about six months he started sending money home from his savings, and I began buying cement for it. By the time he died the house had just been started. At the time the funeral rites were taking place, I didn’t think about the property or the house didn’t even protest. One of Chris’ brothers took over the land, but never finished the building work – it just sat there, unfinished. I began to feel very badly about all this, and this feeling increased as time went on. As the girls got older, we talked more and more about the house issue. I talked to my father-in-law about it, but he was reluctant to intervene. This was and is our tradition, and he wasn’t comfortable challenging it.

86 – We Miss You All In the end, I took out a loan, bought a new piece of land, and started building a new house. It took another five years to get it into a state where we could move in, as I could only afford to put a bit of money into it now and then. Once it was done, though, the first thing I did was to write it into my will in the name of the girls. This way they will own it right from the start if anything happens to me. This experience taught me that you have to fend for yourself. You have to put down word for word what you want to happen. This is not only my experience. I have seen other women less privileged than I who have been thrown out of their houses, every item (even clothing) taken from them, even things they bought for themselves, because they didn’t write down what they owned, and what they jointly owned with the man. So, when I’m talking with people living with AIDS I tell them to write down a list of their things, write down what they want to happen when they die. It doesn’t necessarily mean they are going to die the next day. But many people are reluctant to write a will. They believe that traditional law is clear on inheritance procedures, and they don’t want to create unnecessary conflict in the family. Unfortunately this solution may simply mean that the family conflict takes place after the person has died, when the immediate family are left in an insecure position. Women are beginning to get angry about these inheritance laws, and as I mentioned there may soon be new laws to rectify these problems, and to protect women in their own right. (or example, Uganda strengthened the way the law deals with sugar daddies during the 1990s, enacting the death penalty against “defilement” of girls younger than 18. But passing laws is not enough. There is need to empower women to recognise these laws, and use them to defend themselves. I mean, how does the sugar daddy law protect a girl who knows that the only way she can get nice clothes, and whatever else, is by going with a sugar daddy. She doesn’t really have a choice, and she won’t tell anyone that she is going with a sugar daddy. And if the relationship is discovered, often a financial arrangement will be negotiated by the sugar daddy with the girl’s family so that he is not denounced to the police. So the law doesn’t protect her much. It’s as important to empower girls as to enact laws.

Noerine Kaleeba: AIDS in the amily – 87 It’s the same thing with the laws against rape. How many people get raped? How many actually come out and say I’ve been raped? It’s partly because rape has a stigma. There has been little progress made on this in Uganda, but the reality is that rape is still surrounded by a “loud silence”. I’m sure many married women who get raped wouldn’t go to their husbands. The husband, instead of sympathising with the woman, might take it very badly, and personally.

A family living with HIV – clients of TASO

88 – We Miss You All Orphans and Other Children Affected by AIDS

When I was young, if your father or mother annoyed you, or of you felt more inclined towards one parent, you would sometimes ask yourself how the world would be without that parent, what would happen if one parent died. (or example, with mummy things might be easier because I could get whatever I want, that kind of thing. This question is no longer possible when one parent has died, because the next one to go will be the last. In Uganda, as in other parts of Africa, death and dying are very much issues that children have to cope with. There were already many orphans when TASO was starting up. They had lived with death and killing, first because of our political situation, and for many other reasons. Now they also had AIDS to contend with. I remember my daughter Marion telling me that virtually every week a child was collected from her boarding school because their mother was dying of AIDS, or had died in a car accident, or some other accident. Recently she wrote, “As a child I knew what death was because, where I am from, death happens every day. Whether it is a blood relative or not, we are family because we are from the same village. Thus the concept of death was an everyday thing, although HIV and AIDS worsened it”.

The other aspect that we address ourselves to, which is becoming an increasingly big aspect of the social welfare of AIDS, is the question of orphans. AIDS in Uganda, and in Africa in general, is affecting the young childbearing population. Where we have been able to reach out to people and where they have been able to accept the final, the ultimate, consequence of HIV infection, the question that we are confronted with is, “What about my children? What happens to my children in the event that I go?” This is also my own personal crusade, because I am a mother of four lovely daughters.

My daughters! I keep saying to people, if I can contribute to a campaign that will succeed in keeping this age group free, a group (5-15 years old) that is emerging in Uganda statistics as not yet affected, I will be happy.

Keynote Address to the Women and AIDS Support Network Conference, Harare, November 1989.

Noerine Kaleeba: AIDS in the amily – 89 Settling the children is an important consideration on the death of a parent, one that is intimately linked with the inheritance issue. Are the children going to be looked after by their fathers, or are they going to join the increasing group of orphans needing care? If there are any complications, all of this has to be negotiated between families, and it can be very hard to sort out. Take the example of my sister-in-law, who had four children by different fathers I had never met. The prospect of negotiating responsibilities with four different families was just too complicated to think about. So I took them all in as foster children. I confess that my public role as an AIDS activist also had something to do with this decision. After advocating for the rights of orphans and other children affected by AIDS, I had to put my money where my mouth was. Since the late 1990s, many of us working in AIDS have moved away from using the term “orphans” indiscriminately and talk instead about “children affected by AIDS”. This may seem like another one of those arguments about terminology that eats up so much time and energy, but it really means something in the African context. The problems of a child don’t suddenly begin when a parent dies of AIDS. It starts before there are even symptoms, because of stigma. People can be very cruel, either directly or simply by shunning someone identified as HIV-positive and their family. Children feel this and suffer from it, even if they don’t understand what it is about. They are also affected if there are tensions between the couple – one blaming the other for the infection, for instance – or between the two families. And then when symptoms arrive, so do the very real problems of income and sustenance. People lose income as they can no longer do their jobs or grow food, yet at the same time their need for money to buy medicine increases. Everyone is affected, even though no one has yet died. And when the parents die, another problem arises from singling out “AIDS orphans,” even when this is done with good intentions. Take this example: some relatives take in a child (actually, it is usually more than one) whose parents have died of AIDS. These relatives are themselves poor, barely able to feed their own children or pay for their school fees. If government or other funds are made available to pay for the orphan’s education and food, what about the other children in the household – do they not also need an education and food? Have these other children

90 – We Miss You All not also been severely “affected by AIDS,” simply by the fact that their family did their duty?

Keeping memory alive is incredibly important, even for children who barely knew their parents. With her characteristic forthrightness, my daughter Christine recently wrote the following about it. She was three when he died:

It has been 15 years now since daddy left. I miss him just from the stories I hear my mother and sisters tell. In a way, I have to admit I am jealous of my mother and sisters’ memories of Daddy, but at least they have them. I have learned to fabricate my own, most of which are from their stories. Once in a while I say “Oh I remember when daddy did this or that” and they’ll say, “Well, we told you that”. I have this one “memory” of him scolding me for trying to avoid eating some food he’d cooked – and he wasn’t a very good cook! I think about it and it makes me smile. But there are sadder ones. The other day Phiona told me, “Do you know Daddy died hiccuping?” Things like that stick in the mind. Last Christmas during a meal, Mummy went quiet while we were talking about Daddy. We were all young when he left so we learn about him from Mummy, but this time she seemed to have nothing to say. When I asked why, her answer swelled my heart. She said “I can see your father in all of you,”” and looking at each one of us she said, “The sulking, the intelligence, his good looks...” I am glad she is still able to see him in us.

One thing that can be done for children “with AIDS in the family” is to help them create what have come to be called memory books. These are collections of photos, documents, mementoes – anything! – that will allow a children to keep a memory of their parents alive long after the parents have passed on. TASO has been doing this for many years, but it only works if the parents are willing to open up about their status to their children. Many are not able to.

Noerine Kaleeba: AIDS in the amily – 91 Conversations with my Daughters

In 1991, when we put together the first edition of this book, I confidently wrote, “My children were comfortable around people living with AIDS from an early stage”. Today, however, I have to acknowledge my incompetence in giving the girls the psychological support they needed to live with AIDS in our family. I know today that they lived in fear that I might die, and that they would be separated from each other. Phiona has written this about it: The day Daddy died our small two-bedroom flat was filled with staring eyes. I felt them burning into my back, my face, and I felt pressured to act appropriately. All the while though I didn’t want to be the one being stared at, I wanted to be one of them staring. But I knew from that day, my life had changed. I can’t really remember much until after I realised that my father had died from AIDS, and what that was, and what that meant for my mother. That heavy realisation that Daddy had died from AIDS, that wasn’t my problem; my problem was the implications for Mummy. I feared Mummy would go too and spent a lot of time watching her weight, panicking when she felt unwell. I was terrified of her dying and us being separated, being forced to live in the village with my grandmother, which at that time seemed so bad. I’d run home from school and sit by the window watching the road and wondering if Mummy would return from work or not. I was afraid to ask her or anyone about her status as I feared she’d confirm my fears, and at least in my ignorance there was a slight possibility it was all in my mind. I refused to talk to my sisters as they might have confirmed it, and saying it out loud would be more confirmation. Although I provided for them and showed them much love, I never provided enough space for us to discuss their fears. They never really had counselling. Instead I encouraged them to meet with other children and form the AIDS Challenge Youth Club, which they did. I persuaded myself that through these interactions with other children who had similar issues they would receive sufficient support. Again I was evading the issues myself. I knew that the anxiety was constant for children in a family where a member has any kind of terminal disease. But I somehow failed to understand how different AIDS was in this, as in so many things. I actually wrote in the first edition of this book that such anxiety was “a part of

92 – We Miss You All life, isn’t it?” When you love someone you are always fearful that they will die. AIDS in one sense is just something else to focus on. If it wasn’t AIDS it would be something else. Every time I go away I fear that something will happen to my children. When I counsel people I tell them that they could be run over by a bus before they die of AIDS. This may have been correct for adults, but I had to acknowledge that for children that’s pretty hard to take. Outwardly, the girls showed every sign of coping very well. They recognised AIDS as an illness. They knew that AIDS carried a stigma, but a person living with AIDS was just another person. My work with disabled people at the Cheshire Homes had already given the children a kind of empathetic background. I would often take them to work with me over the weekend, and they would sit and read to people who were paralysed and bed bound or in wheelchairs. So I felt they were prepared in a way for the work I was doing with TASO. I didn’t hesitate to invite people living with AIDS to the house, and the children didn’t make them feel any different from other people. Christine, as a little girl, would always be the first one to jump into their laps. In fact, I rationalised that it was a good experience for them even though I could see it was sometimes very painful, especially for Elizabeth, the eldest and the most affected by Chris’ illness. Each girl reacted differently, according to her particular personality and also her age at the time their father died. (or years, Christine associated headaches with people dying from AIDS, because when Chris was dying he had a severe headache from meningitis. If I told Christine that I had a headache she became worried and fearful, and would fetch a towel to mop my forehead, and tell me to take an aspirin. She remembers how her feelings changed as she grew older: When I was little I once said, “Mummy don’t cry, I’ll buy you another Daddy”. I’d thought it was that easy – go to a shop and buy a mannequin that turns into daddy. They all laughed at my innocent remark. Then later I’d be asked, “What happened to your dad? Are your parents divorced?” My answer would always follow with a “But I don’t care”, and I genuinely believed it. It wasn’t until I started to think that although I was content with mummy, I could use a dad that it hit me, and it hit hard. I was once told I was jealous of everyone else because they had a daddy. At the time I thought it was a ridiculous way to try to hurt me.

Noerine Kaleeba: AIDS in the amily – 93 But the anger I feel when I hear someone say “Oh, my dad is so stupid” is evidence that I resent people who are unable to see how fortunate they are to still have their fathers. A practical, independent type of person from a very young age, Marion seemed more resilient than the rest. Today she says: After the tragedy we all had to grow up. My mother instilled in us the need to pursue independence as soon as possible because, as women, the world was already made difficult for us but as orphans the negative odds against our future were doubled. Mummy’s new task of spreading information about the deadly disease introduced a lot of days without her, and I was moved to boarding school where I learned to grow up independently. But during that time, I never worried about my mother’s health because I knew that God needed her around to share her story and become an advocate against this disease. It wasn’t till later, when one of my sisters expressed her fears to me, that I started to worry about her. Yet even today, Marion both misses her father and feels his presence: All I had with him was seven years. I miss that he was not there to see me graduate high school, I miss that he will not be there to hand me off when I get married. I miss that he will not get to see his grandkids. In Ziiru, at the gravesite, he and I have one-on-one sessions even though he does not respond at all. I believe that we came to an understanding 15 years ago that I will do the talking from now on and he would do the listening. His presence is still felt among us especially in dreams. Phiona reacted differently again. She was able to talk about AIDS, especially with Philly Lutaaya’s daughters, Tessa and Tina, and was involved in AIDS awareness at school. Yet there was more happening than could be seen from her sunny exterior. She writes: AIDS was starting to make its way into the public eye, and I knew people talked about us. I took refuge in my schoolwork. Not all that was said was negative; there was some sympathy but loads of pity too. The girls in my school being away from their parents could not make up their minds about me, but came to realise I was no different from them. At my age it was hard to suffer all that alone so one day I said it: “My father died from AIDS.” The girls knew but even I was shocked to hear myself say it. After that it was not a secret, I was not hiding, it was a relief. I could move on, it became easier. It seemed natural that I should get involved in TASO activities. TASO started around me and in the early days I felt so much at home there that

94 – We Miss You All everyone was auntie or uncle. I spent six months volunteering at the TASO Mulago outpatient clinics. I enjoyed being around people there. After six months however I could not do it anymore because there was so much death, someone would be fine today and dead next week. It was very draining. Elizabeth suffered on her own, alone. Only once did she talk about my involvement in TASO. She asked “Mummy, can’t you find another job? Can’t you find anything to do other than work in TASO?” Even then, I didn’t quite grasp why she didn’t seem to appreciate that for me this was a commitment, a dedication. But I was aware she felt hurt that I worked with AIDS, and talked about her father dying. Every time she saw people living with AIDS, when they came to the house, it brought memories back. She says: I did not want to associate with all of that. I worried my friends would think my Dad had had too many women. I understand better now with the information available, but back then The children at my school knew about TASO but rarely did anyone ask about how I felt. And yet, by that time I imagine many children were going through what I had already experienced, but were ashamed to talk about it. She wouldn’t join in any talk about AIDS, although she did voluntary work with the TASO youth programme during her Secondary (our vacation. I am so glad now that the need for child counselling has been recognised and there is increasing focus on giving this kind of support to children affected by HIV and AIDS. I am especially proud that Elizabeth, who herself never had this kind of support and needed it most, has chosen to work on a child support project within TASO which aims to address this gap.

Noerine Kaleeba: AIDS in the amily – 95 And What About the Grandparents?

My children’s concern about having a house, a home, related to a particular fear of being split up. Children belong to the husband’s clan in our tradition, so if one of my sisters-in-law died her husband’s children would have to go to my mother-in-law, who lives in a village about 20 miles from Kampala. In the past, this system worked quite well because the system of extended families and village life was “elastic” – it could always stretch to find a little more food and somewhere to sleep and so on for a few children. But AIDS has stretched traditional social safety nets to the breaking point, reducing the number of adults in their prime and piling fresh responsibilities on elderly people. My mother-in-law has already raised 10 children of her own, and she’s old and heartbroken. She is a very hardworking woman, and grew her own food well into her 60s, but more responsibilities would be beyond her, not just physically but emotionally. Today, at age of 75 she has lost six children, four of them to AIDS. She doesn’t like to talk about it. All she has left now is love, and she doesn’t know how to share it. Her grandchildren remind her of the children she has lost, and my girls sense that when their granny looks at them she remembers their father. It is difficult for her when she visits us because we talk about Christopher a lot. She either keeps Noerine’s “maama” quiet or changes the subject. This is her tradition. Culturally we don’t talk about the dead. There are a lot of different ways to mention death without actually saying the word. (or me, I always felt it would be healthier for my children to think in a more positive way. They know their father is dead, and the only way they will meet him again is by dying.

96 – We Miss You All We went to visit daddy at his resting place today for the first time in two years, the silent grave that I have stood over from the age of three. I think about things to say to him when I go and wonder if maybe he’ll say something back. It’s not really talking, it’s just in my head. Its amazing how such a beautiful, peaceful place is unable to suppress the sadness. The neat row of relatives many of whom I’ve never known. And my grandmother, who each day from her veranda has to watch her children and grandchildren sleep without a stir.

Christine Kaleeba, January 2002.

But my mother-in-law doesn’t want to talk about any of her children who have died, except in very rare circumstances. My father in-law’s attitude is different. Traditionally, I’m not supposed to be close to my father-in-law, but he’s a more accepting person. When my sister-in-law was ill he was the one who sent her to me, who advised her that she should have a blood test. With him I could say, “I think she has AIDS.” When she finally died my father-in-law said publicly, at the funeral, that she had died of AIDS. He talked of it as a terrible disease that had to be stopped, and one way to stop it was by being open about it. Looking back to the early days of TASO, in counselling parents who were elderly, I was never sure of the value of telling them that their son or daughter had AIDS. Some people said it prepared them better, prepared them for any eventuality. I concluded that it depended on the person, and I just had to use my judgement. In all cases, I tried to encourage people to identify one person they were close to and tell them. It then became a family responsibility to think about the parents, the spouse, and so on. Overall, I felt that the only reason for telling anyone about a diagnosis of AIDS was positive living. If I judged the situation such that positive living was beyond reach, I didn’t see any reason to tell parents about the cause of the death. I would allow the parents to grieve for the person without adding the difficult cross of AIDS. This, of course, had implications for death certificates, and what was written on them. In some circumstances, I felt it was justifiable to write the person died of pneumonia or meningitis rather than AIDS if it protects the privacy of the family. The statistics on AIDS could be collected from other more public data.

Noerine Kaleeba: AIDS in the amily – 97 Today things have changed in Uganda, since awareness of AIDS has grown and stigma has been steadily reduced. But at that time, it was easier in some communities to publicly claim the body of a son who was a thief than one who had AIDS. The family could “come out” more easily because the shame attached to death as a thief was less than that attached to AIDS. It is why you found people bending over backwards to call the illness all sorts of names other than AIDS. This has now by and large changed in Uganda. Still, and especially in countries that haven’t advanced so far in fighting stigma, if a family needs that kind of protection they should have it.

TASO today

TASO has become a key player in the Ugandan response to HIV and AIDS and has made a significant contribution to Uganda’s success in curbing the spread of HIV. It also continues to have a high international profile, and to serve as a model of “best practice” in its various activities. Some of the countries that have received training from TASO include Botswana, Kenya, Malawi, Rwanda, Tanzania, Zambia, and Zimbabwe.

TASO is a fully registered NGO, offering counselling services, outpatient clinical care, and community care for people living with HIV and AIDS. With seven centres across Uganda, the organisation also offers awareness and sensitisation programmes for a cross-section of the community, from medical personnel and political leaders to village community workers.

TASO still has a special mission among the poorest sections of society, the people that are infected or affected with HIV and AIDS and unable to afford the expensive services in the market place. Two-thirds of the clients served are women. In the year 2000 alone, over 21,000 individual clients were served. As well as those provided directly with services ranging from counselling to medical care, TASO provides education on HIV to over 100,000 people annually.

(Ior more about TASO, see “Ior further reading” at the end of this book or visit their website at www.taso.co.ug)

98 – We Miss You All Part III. rom Kampala to Geneva

Hope and dilemmas

The reduction in drug prices has generated both excitement and intense dilemmas for families.

I have four siblings who are HIV-positive, and although we had previously agreed within our family that we could not afford ARVs (antiretroviral drugs) for any of them, the issue is being revisited now – thus placing enormous pressure on me as I am the key breadwinner of the family!

And I am not alone in this predicament. Many people coming from hard- hit countries are under tremendous pressure from family and friends back home to assist them get on medication. Many people, like me are already spending a growing proportion of their income to support good nutrition and essential care for their loved ones, as well as to ensure the well-being and schooling of orphans. This is another AIDS-affected group that is never discussed at conferences.

Address to the World Health Assembly, Geneva, May 2001.

Noerine Kaleeba: AIDS in the amily – 99 The efforts we initiated in TASO gained global recognition quite early. We in TASO wanted to share with the world, especially our fellow Africans, our concept of counselling and support for people living with HIV, and support for communities that find themselves unsure of how to react to HIV and AIDS. In 1990 I was awarded the first “It Works” award for innovative work in AIDS care in Africa by the Norwegian Aid and Development Department, NORAD. This was followed in 1991 by the Dr Comlan A.A. Quenum Prize for Public Health, awarded by the World Health Organisation’s Regional Committee for Africa. I received numerous invitations from all over the world to share our experiences, which started me travelling quite a lot. As well, TASO began to receive an endless stream of visitors who came to witness this phenomenon of “positive living” and how the concept “living with AIDS” was being translated beyond simply staying alive after receiving a positive diagnosis. In the late 1980s I was appointed to the Global Commission on AIDS by Jonathan Mann, which began my formal association with WHO’s Global Programme on HIV/AIDS. I went to Geneva regularly for meetings and also undertook short-term assignments on care and support in Africa on behalf of the Global Programme. Despite this association it came as a big shock when I received a letter from none other than Dr Nakajima, the Director General of the World Health Organisation, in 1994. The letter advised that my name had been proposed among those to be considered for the position of the Executive Director of the expanded programme on HIV that was being developed (Jonathan had resigned in 1990, after serious disagreements with Dr Nakajima, and the programme had had severe problems within WHO following that). My immediate reaction was, “No way, not me!!!” In fact, at first I thought it was a joke. But the letter was followed by a phone call from Geneva to check if I had got the letter and if so could I urgently send my response. So I wrote back and thanked Dr. Nakajima kindly, and indicated that I had no intention of standing as a candidate. And of course I omitted to say that I did not even understand what all this was about, or what was needed for a job like that. One thing I knew quite clearly, however, was that whatever it meant I did not have the kind of skills that kind of job requires.

100 – We Miss You All But this invitation sowed the first seed of the idea of leaving home – leaving TASO – to work globally. I realised that when time came for me to leave TASO I would need to leave the country as well. It would be very difficult for me to stay home and not interfere with whoever was brave enough to take over from me. I also knew that many friends and supporters of TASO just took it for granted that I would stay on since, as people frequently put it, I was the “heart and soul” of TASO. That was nice to hear, but it certainly wasn’t true – the heart and soul of TASO was much, much bigger than one increasingly burnt-out woman.

Noerine Kaleeba: AIDS in the amily – 101 irst Steps Out of the Nest

I began to take tentative steps to test the waters, to see how TASO would react to my being gone. In reality I was testing how I would fare without TASO! The first step came when the girls and I took our first family holiday, all paid for by a wide network of friends who had even given themselves a name: the (riends Of Noerine Kaleeba ((ONK). Jaco Hommsy and Rachel King (at the time, working with Medecins Sans (rontieres in Kampala) mobilised the (ONK in and out of Uganda and got enough money for us to go on a three-week holiday to Mombasa in Kenya. While the girls were hugely excited about their first holiday, I was very apprehensive. What would I do on a holiday for three weeks, and what would TASO do without me? I did actually enjoy the first week of the holiday but spent the rest worrying and fidgeting. The girls enjoyed themselves tremendously and often refer to it as one of the key pleasures we shared during the years I worked with TASO. I will always be indebted to the (ONK for giving us this present. I’ll admit that I was a little hurt on coming back to TASO after three weeks, when I discovered that I had not been missed. But it confirmed my suspicion that I was not as indispensable as people seemed to think. The second incentive to begin planning my departure seriously was unfortunately not as pleasurable or even as funny as the letter from Dr Nakajima. It arose when the Ugandan media reported erroneously that I had put blame for the continued spread of HIV in Africa on polygamy and Islam. This totally misquoted a speech I had made at a conference in Stockholm, Sweden, but the damage was done. The false reports naturally caused tremendous stress within the Islamic community in Uganda and caused all kinds of badly informed views being expressed about me and my alleged crime. I returned to Uganda few days later to find a hornet’s nest in full buzz, including talk of death threats and a fatwa2 that had allegedly been promulgated by Muslim authorities. All of this was published in the media, and caused my family and myself considerable distress. My first concern was to ensure that a correct record of what I had said could be obtained from Stockholm. As it happens, Dr Peter Piot,

2A fatwa is a religious ruling issued in Islam, popularly associated with condemnation of a person

102 – We Miss You All the current executive director of UNAIDS, had been present at the very conference where I had spoken. He was at that time working with the WHO Global Programme on AIDS as its director of research. With the help of Dr. Sandra Anderson (another one of my heroes) WHO took on the job of establishing the origin of the misquote and also check on the status of the fatwa which had supposedly originated in Cairo. Mercifully it was concluded that there had never been such a fatwa – in Cairo or anywhere else – and that the important thing to do was to clear the misunderstanding within my own country, Uganda. I received solid support from the TASO board of directors, particularly from Dr Katabira the chairperson, from Major Ruranga Rubaramira, the board’s representative of people living with HIV, and from Ian Smith, the honorary treasurer. But the most memorable support came from within the Ugandan Muslim community itself. Dr Magid Kagimu and Rashid Munyigwa, two frontline leaders of the Muslim response to AIDS through the Islamic Medical Association of Uganda (IMAU), answered my request for help immediately. With their support and guidance we were able to reach the top leaders of the Muslim community who turned out to be most sympathetic, and we were able to sort out the misunderstanding. This process established that certain local interest groups had fuelled some of the threats. I can’t go into details, which had little to do with me personally and more to do with the very complicated politics that sap vital energy from my country. The long and short of it was that I was profoundly disappointed by this realisation, and worried that TASO would be damaged as a result. So, I began to make concrete plans to leave TASO and in April 1995, I retired from my responsibility as its Director. I haven’t entirely cut that umbilical cord: I was elected Patron of TASO, a purely voluntary position but one that enabled me to assist the TASO board in recruiting the next director, Sophie Mukasa-Monico, a bright young lawyer. Sophie served until 2002 when the current director Dr. Alex Godwin Coutinho took over.

Noerine Kaleeba: AIDS in the amily – 103 The Move to UNAIDS

In the meantime, Peter Piot had been appointed executive director of the newly created United Nations Joint Programme on HIV/AIDS (UNAIDS). When I was approached to join UNAIDS in 1996, I understood it to be recognition of our efforts in TASO. But I also saw it as an opportunity for me to influence global policy, to use my experience to help strengthen community responses to the HIV pandemic. I realise now that I was naive in my expectations about what influence I would have and my potential impact. I imagined myself helping to build or reinforce a wave of TASOs all over Africa, and perhaps in other parts of the world. I’ve always been very aware that my strengths are based in my understanding of the place I come from. So, while I have learned from the experience of other continents, I’ve never been comfortable prescribing African solutions to other places. The enthusiasm with which I joined UNAIDS was further fuelled by my appreciation of the passion and vision of Peter Piot. (rom the time I first met him in the late 1980s I had always thought of him as one of few scientists with a heart, a compassionate and visionary doctor like Jonathan Mann. The prospect of working with him was a strong incentive to accept UNAIDS’ offer. (or all of these reasons, I can fully rationalise the decision I made in accepting my UN job: I needed to give the girls some space and opportunity to explore their potential. I needed to give TASO space to grow out from under my wings. I even hoped that my grassroots experience in responding to the HIV pandemic would be critical to this new UN global programme. But I know that the most important reason why I left is that I was totally burned out and I needed space for myself. The survival guilt had been accumulating year by year as many of my friends fell ill and died. The strain of loving and losing was beginning to wear me down and I realised that if I did not move on this strain could easily begin to have some bad effects on TASO.

104 – We Miss You All Loving and leaving

Knowing when to say goodbye is one of the hardest, yet also the most important part of leadership. This is one of the lessons I’ve learned from observing NGOs and other organisations over the years. >ar too often they are led by one or two people, often hard workers with charismatic personalities, who find it hard to let go even when their contribution to the organisation they built is much reduced or even negative. The UNAIDS offer came at exactly the right time for me, and for TASO.

The first years at UNAIDS were inspirational. We were a small committed team with minimal bureaucracy, unafraid to take actions that we were convinced could bring HIV onto the agenda at different levels. We had a mission to get the UN system and political leaders all over the world to recognise that AIDS was a disaster, that it was bringing suffering to millions of people and that it needed to be addressed urgently.

Noerine at her UNAIDS desk, Geneva

Noerine Kaleeba: AIDS in the amily – 105 Our success in moving HIV and AIDS onto the international agenda is a bittersweet experience for me. Peter Piot has an astute understanding of politics and power, a skill I wouldn’t have suspected him of having when I first knew him. It is amazing to see African leaders, some of whom once pretended that AIDS was only an issue for foreigners and “bad people,” waking up to the disaster on their doorsteps and making public statements in support of HIV programming. There is more priority given now to HIV in developing countries, the various UN agencies have increased their HIV budgets, and some important progress has been made on issues like drug prices. But that very success has somehow skewed things from my perspective as a former frontline worker who is now a mid-level staff person in a UN organisation. The pandemic has been caught up in politics at all levels. We have to spend a lot of our time sorting out what is politically correct and how to ensure that we do not step on different people’s toes. Most frustrating, we (and here I mean the world, not just UNAIDS) are far from meeting the challenge of bringing care to the millions of people who need it in Africa and other parts of the world. Political success – declarations, agreements, and so on – isn’t easy to achieve, and I know it is important for further work, but it is not the real objective of the job I felt I was hired to do. This situation creates daily dilemmas for myself and others like me. My training is in physiotherapy; my experience is in counselling and caring; my heart is in supporting people who are sick. (ighting for budgets and attending meetings and writing reports are not activities in which I excel (ask the long-suffering UNAIDS administrative staff who have to clean up after me!) Perhaps it is a personal failure, or a deficiency in the training people get when they join UN agencies, or simply the result of my unrealistic expectations – I don’t know. Yet I continue to work with UNAIDS because I see it as the only hope, the only way to focus advocacy in order to provide the much needed influence. One day, when I have more perspective, I may try to write more about this.

106 – We Miss You All Coming Out as Sero-negative

It was during my first year with UNAIDS that an unresolved issue finally came into the open: my HIV status. We often lament the fact that the majority of people living with HIV are not aware of their infection, but there are also many HIV-negative people who are not aware that they are HIV-negative. They have been exposed. Perhaps like me their partner has died of AIDS, and they just assume they are infected too and don’t bother getting tested. This assumption would not be bad in itself if they would then take an immediate decision to “live positively,” with all that entails. Unfortunately, it can mean they miss opportunities to change behaviour or to reinforce those behaviours that may have protected them thus far. As well, many people say that they do not want to know, and yet they maintain a state of internal panic that leads them into making wrong and often risky decisions. It was the job with UNAIDS that made me finally take my confirmatory test. Anyone who knew me, or who had read the first edition of We Miss You All, knew that I had already had one test whose result was negative. I didn’t believe that result at the time and hadn’t gone back to get it confirmed. As the years went by and my health remained good, I realised it was highly likely that I was negative. But now I really had to know. I couldn’t face the idea of going so far from home, of starting a new life, and then falling sick. So I had the test done in the months before I left for Geneva, and was relieved at the result. In many places, testing was no longer as expensive or time-consuming as it was when I began my work with TASO. This made it even more of a priority to get people who were negative to know their status, to give them an even stronger reason to protect themselves. So for all of these reasons, I made the decision to share with increasing numbers of people that I was HIV negative. This landed me in a painful dilemma when suddenly, certain people living with HIV – people with whom I had worked for many years – began to regard me as different. Soon after I started the job, I went to an NGO meeting in Paris. This meeting included women and men living with HIV, and at some point the participants broke up into workshop groups according to their constituency (that is, the type of people they either represented or worked with). Having been an advocate for positive women for many years, I

Noerine Kaleeba: AIDS in the amily – 107 found myself naturally drawn to the workshop of the International Community of Women Living With HIV/AIDS (ICW+), but no sooner had I entered the room than I was hit with the question “Noerine, are you HIV-positive?” I was really taken aback by that question, especially since the young woman who challenged my presence in that meeting was one with whom I had collaborated closely in this movement of positive living. It soon became clear that she was coming from a largely northern perspective as the ensuing discussion basically split the group up along North/South lines. Dorothy Odiambo from Kenya, who was representing African women in the meeting, strongly urged that ICW should embrace HIV- affected women and also children of infected women. This seemed natural to me and to most of the African women there. It reflected our approach at TASO all along. But the women who wanted the meeting limited to those diagnosed as HIV-positive were fiercely attached to their position, and the argument was eating up precious meeting time. I decided to leave the meeting in order to allow it to continue, but I was very disappointed at the narrow view having prevailed. Looking at it from my African perspective, I wondered how an infected woman would ever have a sense of belonging in an exclusive club that does not embrace her children, or shuts her mother or sister out of a meeting. I am an African woman widowed by AIDS, HIV negative but living with

Noerine, Christine and friend at family gravesite

108 – We Miss You All HIV and AIDS for over 15 years in my personal and work lives. Like other African women, I have cared for so many people with AIDS, and even now look after 18 children orphaned by AIDS. (urthermore by living positively, I experienced first hand the stigma that HIV brings, and was able to speak out against it on behalf of others living with HIV when most people were not prepared to take the risk to do so. Did that experience now count for nothing? I felt that there was an unhelpful precedent being set here, whereby the making of a political statement based on differences, rather than the need for support and solidarity, was becoming the overriding factor in encouraging HIV-positive women to come together. But I have been comforted somewhat over the years to have observed that, while these acrobatic discussions as to who belongs and who does not belong to what elite club continue at global levels, people at the grassroots continue to reach out to each other for care, support and solidarity. I feel I now belong to a new club: one which promotes “living positively” as a family and community concept, a club which is not limited to those who have tested positive with HIV but also accepts those who care for and love people living with HIV, including those who are striving to keep free from the virus.

Noerine Kaleeba: AIDS in the amily – 109 AIDS Continues to Ravage my amily

You have only to look at the statistics and reports that UNAIDS publishes every year to know that the HIV pandemic is still growing in much of the world. On a global level, our best estimate for the year 2001 was that 40 million people are living with HIV, of whom 3.2 million were children under the age of 15. About 28.5 million of those infected live in sub-Saharan Africa. AIDS is killing a lot of people, 3.1 million in 2001 alone. But it is stalking and catching people even faster: in the same year, five million people were infected with HIV. Uganda is one of the few “success stories” in this tragic situation, having reduced the rate at which the epidemic was growing in its population. I am proud of my country, and pay full tribute to the efforts of our government, and also the many international agencies, NGOs, church groups and community organisations that have helped achieve this. At the same time, I have to put quotation marks around the word “success” every time I use it, because although the statistics are impressive, it certainly doesn’t feel like a success to me or to anyone I know. Too many are still dying and suffering. Since the first edition of this book in 1991, AIDS has been back again and again to steal more of my family members: (irst to be snatched was my sister Rose who died in 1992. Her spouse had died soon after Christopher. Then in 1994 my sister Harriet and her spouse were diagnosed. Mercifully, Harriet struggles on but her spouse died seven years ago. My brother Andrew, and his spouse, and my niece Veronica were diagnosed the same year. Veronica died in 1995. Since then I have lost 12 close family members. All of them have left children who now constitute the 14 children for whom I am the sole breadwinner. As if that was not enough, my sister Justine who had been so healthy and so robust died suddenly from a different virus infection, after being bitten by a rabid animal. Her exposure to rabies would not have happened in an industrialised country, and with vaccination she may have survived even within a mediocre health system. Immediately I had to undertake to provide financial support for her children to continue school. In all this I am very grateful for my mother’s continued health, and the support of my brother David. While I have to provide the financial support to 18 children at the moment, my mother and David provide the love and parental guidance during my absence.

110 – We Miss You All Pain: Still not a High Enough Priority

I still can’t help reflecting back to the pain in which Christopher died. (or a long time, this fuelled my anger against this disease. Over the years, an intense feeling of frustration has joined this anger. One key issue that makes me most frustrated is that of pain control for patients who are bed-ridden and are being cared for at home. Pain is one of the most distressing symptoms both for the patient and the family. I recall the experience of pain that my sister Annette had when she developed cancer in one of her legs in 1993. At the same time she developed an injection abscess that required daily dressing. She would spend the whole day and night in agony. The adults in my family often had to take a sleeping pill in order to have some sleep. During the day and whenever the TASO home care team came to dress the abscess my sister would scream in agony during the whole procedure. She was unable to eat because of the pain. Ordinary painkillers like aspirin or paracetamol had no effect whatsoever. As a health care worker I knew that stronger painkillers existed, but most of them were derived from narcotic drugs. This meant they were classified as dangerous drugs and could not therefore be administered at home without medical supervision. So we suffered the pain with her and had even got to the point where we were praying that she would die and be released from it. Then one day the angel of mercy came to my house, in the form of Dr. Anne Merriman and her Hospice Uganda team. They administered oral morphine and dressed her wound. Annette died six months later but for the rest of her life she had peace and dignity and my entire household had palpable calm. Unfortunately, it is still difficult to get such drugs; such is the fear of narcotic drugs in official circles. And so, people still live – and die – in agony. This is unforgivable. We have a pretty good idea of what should be done, we have a fair knowledge of what works but we continue to engage in endless debate. Good pain relief should automatically be part of home-based care (HBC), with training of health staff and volunteers in pain relief as part of the HBC package.

Noerine Kaleeba: AIDS in the amily – 111 Hope for HIV-infected Parents and Their Children

At the same time as the anger and frustration, I also feel a good deal of hope, which arises primarily from knowing that we have come a long way. Despite our grief at the loss of so many of our friends and family members, we now know quite a lot about this tiny bug called HIV. We know how it is transmitted and how it is not. Implicitly we know how to stop its further spread. But more importantly and perhaps more related to the reasons why people like me came to the frontline, we know that it is possible to live with this bug and to live a good quality life. Better still, we now know that the “positive living package” that we began to articulate in the early TASO days is the key to living good quality life with HIV and AIDS. Even with limited access to more sophisticated treatments such as antiretroviral drugs, people can be supported to live good quality life. The longer they live the more time they have to bring up their children who will then grow up with parental guidance and stand a better chance of escaping the virus. Many organisations are now providing home-based or community care. This is not about “decongestion” of hospital beds but about providing the comprehensive range of medical, nursing, counselling, spiritual and nutritional care that must exist from hospital to home. The crucial role of the family and community members in this continuum of care has been recognised by most medical authorities, as has the need to support, supervise and encourage them in this role. (or the reality is that when care moves out of the formal health services into the family, community dynamics enter the picture. (amilies caring for people living with AIDS may be stigmatised or rejected. Without support and encouragement families may abandon their traditional caring role and carers may despair. (or all these reasons, the best care depends on a continuity of services, with links and referrals to help the person in need receive comprehensive services as close to home as possible. It means that the dignity of people living with AIDS must be upheld and respected, and families must be encouraged to “share confidentiality”. Communities have to be at the forefront of breaking down stigma, advocating by example, showing what is possible and what can be done. In Uganda today young people

112 – We Miss You All living with HIV are the most powerful educators in their communities. They are able to do this only because the community accepts and encourages them. The positive advances made in the prevention of mother-to-child transmission of HIV has restored much needed hope to women – young women as well as older women, who otherwise would die without having had the joy of kissing a grandchild. But it has also added to the complexity of issues the African woman has to sort out. (rom my point of view, there is a problem in the way that prevention approaches have been framed around the woman as an individual decision-maker (the “Northern” approach to many things) instead of them being a family decision. Everything seems to assume the woman – usually young, often with little education or access to information – is willing and able to make a lot of complicated decisions by herself. This starts with that big decision to take the HIV test. Maybe after some intensive one-on-one counselling a sophisticated young woman in New York or Berlin will be ready to make that decision on her own. But where I come from, a young wife in her teens or early twenties would need to talk it over with her mother or an aunt, and they would want to consult other important relatives. Leaving them in the dark would be hard for her, a negation of the way she was brought up and an act of disrespect against the important people in her life. But say she is brave enough to have her test by herself, knows she is HIV-positive, and is trying to decide whether to have a child. Once again, she is in a tough position. On the one hand, she will be desperate to have her family’s advice and support, but now it is even harder to seek it since she has already hidden the first issue from them. On the other hand, since her family doesn’t know about her status and doesn’t know much about HIV anyway, they will be pressing her to get pregnant – and I assure you that, where I come from, the pressure from aunts and grandmothers and everyone else to get pregnant is an awesome, unrelenting thing. In most cases, she will simply give in to the pressure, and have unprotected sex with her partner. This may reflect her wish to have a child despite the risk. But she may give in even if she doesn’t want to have a baby. She is highly unlikely to ask her partner to use condoms or abstain from sex, unless he has been to couple counselling with her and fully understands the issue. She knows he will complain to

Noerine Kaleeba: AIDS in the amily – 113 his family, and they will complain to her family, and she’ll be under even worse pressure to explain to everyone why she is being a bad wife. So she gets pregnant. If she is lucky, she may be able to join a good mother-to-child HIV prevention programme, and get treated with an antiretroviral like nevirapine or AZT. She may have her baby in good surroundings, with adequate institutional care and artificial milk feeds to prevent infecting the baby through her breast milk. But what happens when she goes home and has to explain to a totally uninformed family the reasons why she is not breast feeding when she has milk? I recall very vividly that when I had my first child my mother-in-law came to visit and among the things she brought was some herbal medicine to increase the flow of milk. If I hadn’t breastfed I would have had to explain why, not only to her but the rest of the family. The fact is, rather than face this, many young women enrolled in mother-to-child prevention programmes come home from the clinic and simply start to breastfeed. If we really want mother-to-child prevention to work in the African context, we have to fit the intervention to the reality. The Northern, individualistic model has much to teach us, especially on a technical level, but it can’t simply be adopted “full stop”. In the same way that couple counselling is increasingly accepted as a useful intervention, there has to be far more counselling that includes and informs the important people in a young woman or man’s life. This is why some women’s organisations campaign for the term “parent-to-child” rather than mother-to-child to be used for programmes, so that mother and father share the responsibility of preventing infection in their children.

114 – We Miss You All Antiretrovirals in the amily

The advances made into more sophisticated care for AIDS – chiefly the development of antiretroviral drugs (ARVs) – have, so far, been a mixed blessing to many families like mine. On the one hand it is exciting to know that the hope we prayed for is possible. The effects on people living with the disease in industrialised counties have been dramatic, with death rates due to AIDS dropping greatly since ARVs began being widely introduced in 1996. But it has also presented intense dilemmas for families like mine, who have several family members living with HIV. (rom the time I became aware of my siblings’ situations some years ago, we decided to focus on ensuring that they have TASO’s essential “positive living package”. This package entails “positive thinking,” early diagnosis and comprehensive treatment of opportunistic infections, good nutrition, continued engagement in income-generating ventures including regular employment, and continued ability to meet one’s social obligations – especially ensuring education and nutrition for one’s children and family. As all of my siblings are in the low income bracket, I pledged to make regular contribution to support this package, especially the nutrition and to ensure that their children continue going to school. ARVs were out of the question – at more than US$10,000 per year per person, it just wasn’t feasible. Recently, however, there have been drastic reductions in the cost of ARVs in selected countries, including Uganda, thanks to efforts spearheaded by UNAIDS. Though still out of reach of any of my family member’s income, this reduction has put tremendous pressure on me as everyone expects that, with my UN salary, I should be able to afford the drugs for them now. I’m not alone in this dilemma – any African with a “Northern” salary and relatives back home feels the same pressures. I cannot afford to buy ARVs for eight adults and six children in my family, so my family has to decide together who has the most urgent need. Towards October of 2001, I had to take the decision to support my brother (rancis in commencing this therapy when his doctor advised me that if (rancis did not start immediately he would not be with us for long. He had not been able to do his job as a driver for a year and had subsequently been discharged from work. It was an ethical choice we made, that by treating him we delayed orphanhood for his eight children. Soon after that it became apparent that my niece Harriet had to start, so

Noerine Kaleeba: AIDS in the amily – 115 I added her too. She too had not been able to do her job as a teacher and had therefore no income. The two of them are doing much better now – it was a joy to see (rancis, recently so ill he could barely walk, actually dancing at my 50th birthday party in Kampala – but they have no jobs, no income. Just recently, in August 2002, my brother Andrew’s immunity indicators took a plunge and we have decided to put him on ARVs as well. (ortunately, he can start with the cheapest of the available combinations, costing about US$70 per month. The scary thing is that for all of these people, ARV therapy is a life- long commitment. The therapy is not a cure: the virus is still there, waiting to surface again if they ever stop their course of drugs. So the need for money to pay for the drugs is going to be constant – an interruption in the treatment could be disastrous. At the same time, my relatives’ children need to go to school and other care. In order to pay for the medicine, my children (both biological and foster children) have to make sacrifices all the time. They accept this; it’s part of being in a family. And I know I am lucky. I thank God every day that I have a job that enables me to reach out in this way. But I continually worry about the day I may not be able to pay for these medicines. And it is not just me: I am but one of a growing number of people from hard-hit families who are having to respond to this undocumented but important impact of the HIV pandemic.

Noerine and her brother Irancis Lutwaama

116 – We Miss You All My appeal to you all

Looking at all the challenges related to care and treatment I realise that the hope of protecting my children and grandchildren – and your children too- lies in ensuring that prevention works for them. We have learnt a great deal about what works in prevention, and there are many good programmes promoting behaviour change – as well as care and support for affected people. Most of these are small and need to urgently be taken to scale. We also know that it takes a long and intensive campaign to sustain changes in people’s behaviour. Our hope lies in the young people who have shown that given appropriate information, skills and support they can learn healthy behaviour. I appeal to you all:

irst, find the space and time to listen to people affected by HIV. Because if you do so, you will find out that they are your key allies in the HIV/AIDS response. Their concerns are also your concerns – namely their health and human rights and the future of their children. >or example, if we kept parents alive even for five extra years we would have less to worry about orphans because children would grow up with parental guidance and love.

Second, intensify global efforts to find a vaccine. Invest more in the science but also increase developing country involvement. Most importantly involve the community more; they may not know the science but they hold the key to a successful vaccine programme. Address some of the most outstanding issues that might hinder community involvement, particularly issues around care and support for vaccine participants.

Third, look at health through the eyes of people in their homes, in their communities. >or poor people, illness does not come in compartments. The best strategy to deal with the global orphan crisis caused by AIDS is to keep mothers alive.

our, let’s build on what we have learned: T that we are not powerless against AIDS; T that prevention and care are two sides of the same coin, they have to be taken together;

Noerine Kaleeba: AIDS in the amily – 117 T that programmes must not only give people information, but also options, and skills and programmes must focus on young people; T that political leadership, involvement of people and communities as well as international solidarity are key ingredients to a successful anti-AIDS campaign. We have seen this in Brazil, Senegal, Thailand, and Uganda,.

ifth, ensure that activism works for the people as well as the cause. Activism has been the key pillar of our success in the AIDS response. The recent success with lowering the prices of HIV drugs is a key step – but only a first step. These drugs have to become accessible for all people living with AIDS.

Address to the World Health Assembly, Geneva, May 2001.

Elizabeth and Christopher junior

118 – We Miss You All My Personal Support System

This may all sound pretty bleak – and realistically, it is. I frequently have people ask me how I keep going in the face of these worries, and in my darker moments I ask myself the same question. (ortunately, I am usually quick to remember the answer: my personal support system of faith, children and friends. Everyone needs a personal support system, and everyone has to put together their own. This is mine: Iirst, is God, my constant faith in Him, and the fact that He has loved me, and taken it upon Himself to give me continued life. My mother brought me up as a Catholic, and even when I displeased her by marrying Chris, a non-Catholic, I never stopped going to church. The children always went with Chris to the Protestant church because he insisted on this, and I went to the Catholic church. During the time he was in England, we all went to the Catholic church. (rom the time I received the telex from England, I prayed like I had never prayed before. I prayed for a miracle every night. I prayed that I would get up in the morning and things would be different. I could not concentrate on normal routine prayers so I started talking to God directly, willing Him to change things. All this was done in tears, on my knees. I had found a new relationship with God. I was not aware of this personal relationship with God until I had this traumatic experience. I am always amazed that God loves me even as I am. I also know that to deal with a problem of the magnitude of AIDS, one has to have faith in some supernatural power. Those of us who have experience of knowing God are very privileged, for we have something to relate to. This does not mean that people who do not know God are doomed. God in His infinite love will bring them friends, will act through children and relatives, and will make Himself known. This is why our acts of kindness should be universal and go across nations to all people. It is through our actions that His light will glow. When traditional prayers failed me, I prayed through Our Lady and the uncanonised saint, Maria Theresa Ludocoska – but I also talked directly with God, sharing my weakness with Him and asking Him for strength and direction each day. Right now I know the direction He is showing me is to reach out, with compassion, to people living with AIDS. I also know He wants me to share my experience with others. This is where I derive the strength to stand up and talk about my

Noerine Kaleeba: AIDS in the amily – 119 experiences at conferences, on TV, at home, and at gatherings. He exposed me to suffering and stigma, and took my husband away as part of preparing me to reach out. He loaned my life, children, and friends to equip me to meet the challenge, and made me articulate and able to understand. But He has not called upon me to preach the Gospel. I only share my faith with those clients who invite me to do so. I want His name to shine through my deeds. One aspect of my personal struggle is a God-given gift, my attitude to life. This has always been positive, regardless of the circumstances. (aced with a problem I would always ask myself, is there anything I can do about it? Anything I can do to change this situation? If the answer was no, I would take steps to live with it and face up to it. Second, is my children. I don’t know what I would have done without them. Their continued existence, and their continued good health, is part of my ongoing support. This was a very big factor for Chris too before he died. Every time I faltered, every time I felt the cross was too great to bear, I thought about the children and how they were coping. They were a big support, a big challenge, and a big reason to keep going. Today, thank God, they are grown and over the last 10 years have made me proud of their various accomplishments. Elizabeth Najjemba is now 27. She completed her studies in Geneva and went back home to Uganda where she could also take better care of her young son Christopher. She then took a course with TASO to become a counsellor, and now has a job as a counsellor and social welfare officer focusing on children affected by AIDS who are registered in the TASO child support program. The fact that she herself has gone through the experience of nursing and losing her Dad helps these children to relate closely to her. As I write these lines, I am looking forward to her wedding later this year – a wonderful prospect. Phiona Nakalawa is now an Engineer. I will never forget the day of her graduation with a first-class honours degree from the very university in Hull where her father had been studying for his Master’s degree when he was struck down by AIDS. Phiona did us proud that day and continues to hold the candle for us all. After receiving her degree, she was offered a scholarship to study for her doctorate in Electronic Communication Engineering at Sheffield university. It seemed a great

120 – We Miss You All opportunity, so at the age of 26 she is now working hard to accomplish her dream within a maximum of four years. Julliet Naluwooza, my stepdaughter, has now joined her sisters as a full member of our family. Also 26, she is a beautiful and sensitive young woman, now married to Apollo Natukunda. My second grandson Glen is the first product of this union. Because she interrupted her school to have her son we are all encouraging her to go back to school now that Glen is nearly four years old. Her loving husband is very supportive of this move and we hope it will happen soon. Marion Buzannyo is a beautiful young lady at 21. She plans to be a specialist in one of the social services and is majoring in psychology as a third year undergraduate at Georgia State University, Atlanta, USA. She is the furthest away from all of us and we miss her as we do not get to see her as regularly as we would like. We all admire her strength of character to have chosen to go so far away without much of a support system around her. We spend lots of money on telephone calls. Christine Nakiyemba will always remain the baby of the family, despite the fact that she is now a beautiful, long-legged and often single-minded young lady. She has consistently done well at school and plans to be a journalist. Now aged 18, she lives with Phiona and is finishing high school in Sheffield. I get to see her and her sister whenever my travels take me through London. Third is the long line of friends that God has brought into my path over the years and through the difficult times. These friends begin in the family, especially my in-laws. There is also my “extended family” in Britain. They were so compassionate and kind when TASO was formed, and some people have kept in close contact with me ever since, supporting the family in so many ways. And there are the many people I have met since then in my work, and the many people who have supported that work and became friends in the process. As I look back, I know that I have lost and gained friends over the years. I will forever be grateful to those who have stuck by me, because I know that I probably did not live up to their expectations. (riendship is a two-way investment and I realise that as I dedicated more and more time to the fight against AIDS, I neglected my friends. Now that I live away from home, I am often not there during important moments in their lives. This bothers me most in the case of those who were always

Noerine Kaleeba: AIDS in the amily – 121 there for me, particularly in the early days of TASO. And yet they remain understanding and forgiving. Any fears that I had about the strength of their friendship were erased last December when I cerebrated my 50th birthday. The generosity and love shown by my friends and family in Uganda was overwhelming, as was that of the network called the (riends Of Noerine Kaleeba ((ONK). I have named many of them in the acknowledgements or in the course of this book, but can never thank them enough. Through this publication I wish to reach out to them all, not only say asante saana but to apologise for being so lousy at keeping contact.

In countries where there are increasing numbers of people falling ill with AIDS, it poses a big challenge to all of us who are talking about AIDS in whatever capacity. There are a lot of scientists working on research in AIDS and producing epidemiological data. There is a lot of talk about HIV and AIDS. People stand up at conferences and say what should be done, but a lot of this has not been translated into action. One very real way in which we can show action in AIDS is by caring and by offering support to people who are diagnosed positive, whether they are friends, people living with AIDS, people living with HIV, or their families. I have sat time and time again with elderly mothers and grandmothers whose talk of their dying loved ones has left an indelible mark upon my heart.

122 – We Miss You All Message for the uture

I concluded the first edition of the book with the following paragraphs. Despite all that has happened, both in personal terms and in the international response to the pandemic, I have nothing to add to it. My convictions remain the same: My message to all people in the world remains one of hope. Hope for a future world without HIV and AIDS. This hope will come out of realisation that the whole population, the infected, the affected, and the uninfected, need to join the fight against HIV and AIDS. This hope also hinges on each one of us, as individuals, taking up the fight against HIV and AIDS. The responsibility to curb the spread of HIV lies with each person as an individual. Collective efforts by government and non- government agencies rely on each individual’s determination to refrain from the type of behaviour which puts them at risk of contracting HIV. To everyone living with HIV infection or disease the message is of hope, and the courage to fight until a cure is found. We triumph over the virus when we do not allow it to spread! We do not, however, have to fight alone, in isolation. There are increasing numbers of friends willing to share with us and accompany us through this difficult period. As Philly Lutaaya (may he rest in peace), who died of AIDS on the 15th December 1989, sings:

In times of joy In times of sorrow Let’s take a stand and fight on to the end With open hearts Let’s stand up and speak out to the world We’ll save lives Save the children of the world.

Noerine Kaleeba: AIDS in the amily – 123 urther Reading

ActionAid – Our vision is a world without poverty Emma and Noerine Kakeeba talking about the work of the Nacola Women’s Group in Iganga. www.actionaid.org/newsandmedia/gallery/et/et.shtml Address by Noerine Kaleeba to the World Health Assembly, May 2001 (UNAIDS Programme Development Advisor, Division for Africa) www.unaids.org/whatsnew/speeches/eng/kaleeba1405who.htm (rom Despair to Hope – Home and Community Care for Persons Living With or Affected by HIV/AIDS in Africa: Keynote Address Noerine Kaleeba, 1st SADC Conference on Community Home Based Care 5th- 8th March 2001 Gaborone, Botswana. Strategies for Hope. Living Positively with AIDS: The AIDS Support Organisation (TASO), Uganda. Written by Hampton, Janie. TALC, 1991. This is number 2 in the excellent Stepping Stones series on AIDS topics, and discusses the formation of TASO. There is also a two-part 50-minute video with the same name. (or ordering or more information, contact TALC at [email protected] or at PO Box 49, St Albans, Herts AL1 5TX, United Kingdom. The TALC website is http://www.talcuk.org/ stratshope. Strategies for Hope. Open Secret: People facing up to HIV and AIDS in Uganda. TALC, 2000. This is number 15 in the series, and also has a video. It looks at how openness from all levels of Ugandan society has contributed to a decline in HIV/AIDS prevalence since the mid-1990s. TASO now has its own website at http://www.taso.co.ug. (or more information contact the Director at [email protected] or at TASO, Kanyaya off Gayaza Road, P.O. Box 10443, Kampala. The HIV Crusader who also asks people to put love to work, Sarah Boseley, Wednesday 19 December, 2001 The Guardian. UNAIDS. Report on the Global HIV/AIDS Epidemic. UNAIDS, 2002. This is the latest in UNAIDS’ comprehensive reports on the HIV/AIDS in the world. Available on the UNAIDS website at www.unaids.org. (or more information contact the UNAIDS Information Centre at [email protected] or at 20, avenue Appia, CH-1211 Geneva 27, Switzerland.

124 – We Miss You All