Issues Paper No. 19 LIVING WITH HIVBreaking the SilencesCreating the Possibility of a Movement for Social ChangeElizabeth Reid A blanket of silence has wrapped itself around Africa, smothering the voices, the fear, the pain, the cries for help. There are some brave voices, including those of a number of courageous women who are with us today. But, still, few couples are talking to one another about staying uninfected, few parents are talking to their children, few colleagues are talking about the future management of their work places, few leaders about the future of their countries. Why this blanket of silence? Is it because there seems to be a difficulty in living in a present where people do not themselves know whether or not they are infected, where they can only watch to see if those they love - spouses, daughters, parents, siblings - start growing thinner, where each day there are more funerals? There is even more silence surrounding the future. Few seem to be willing to address the question of how they will live in a future, perhaps only five to ten years away in some countries, when they will be surrounded by people dying, where the normal expectations of daily life will be more and more disrupted, where the devastating impact of this epidemic will be more visible in the faces of children on the streets, in the empty seats in offices, in the scarcity of public services. Yet if people do not begin thinking about and planning for the future now, the impact of this epidemic could cause civil and economic disintegration as people flee or turn against their leaders or turn against each other. Just because the pain and the silences are no longer bearable. To prepare people for a less bleak future, a future which could mix pain with hope, grief with love, today's silences must be broken and people start talking about HIV in the way they talk about the effects of devaluation on their lives, or who will win the soccer or when the rainy season will come. Breaking the silence is critical for keeping families together. Without couples and families talking, there could be a breakdown in trust between men and women, a reluctance, particularly on the part of women, to marry, to have sexual intercourse or to have children. Many women and men may decide not to marry, not to establish families. Breaking the silence is critical for preventing more people from becoming infected. Experience in responding to this epidemic has taught us the profound importance of dialogue, of discussion between sexually interacting people. Such a dialogue presupposes a desire to remain uninfected and not to infect others. Thus it presupposes not only awareness but also self esteem and mutual respect. But it requires something more. It requires a capacity to talk intimately about sexuality, desire and protection from infection. Seemingly, and for different reasons, talking things over, breaking the silence, is not easy either for women or for men. There is also a need for greater insight into, and discussion about, why and how men and women enter into sexual relations. For women, this may have to do with cultural imperatives which place high value on motherhood and on the continuation of the lineage. Or the reason may have to do with economic imperatives, an inability to survive economically without the support of a man or except by commercial sex work. Or with a need for protection, a critical social role that men play. For both women and men, factors which are causative or contributory include:
All of these factors have to be discussed in the context of national HIV/AIDS programmes if the spread of the virus is to be slowed. The second programme focus of most national HIV/AIDS programmes is the care and support of those infected and those who care for them. Most people in Africa die without knowing that they are infected, even if they fear so. Those who do know, particularly if they are men, know because they are diagnosed with AIDS when they are quite close to death. Some women get diagnosed indirectly through the diagnosis of a child with AIDS. Few blood donors choose to know their results. Few people in Africa have access to affordable voluntary testing and counselling sites. Thus programmes of care and support are, for the most part, programmes for the terminally ill. They are to assist in the dying with HIV, not in the living with HIV. They are not programmes to assist people to live with the knowledge that they or those they love are infected. Many counselling, care and concern programmes are volunteer based. They are built on the widespread concern and commitment that exists in African communities towards those who are experiencing misfortune. Most but not all those who volunteer are women who are already burdened by their other roles and responsibilities. Many of the men who volunteer know themselves to be infected with the virus. Home-based care programmes, in particular, play an important role in breaking the silence around this epidemic. They lessen fear and stigma in communities. They help men and boys learn how to care for the sick and the dying. They help protect those for whom they are caring from abuse and neglect. They help in making AIDS a part of everyone's daily life. However, their effectiveness and sustainability is often limited by a lack of integrated planning. There are often no associated systems that guarantee the timely provision of basic necessities such as soap, food for starving households, protein supplements for the sick, simple medicines, especially for the treatment of opportunistic conditions, transport to and from the hospital or health centre or services for children. They are also emotionally wearing for the counsellors and carers since they are working almost exclusively with the dying and their families, often rendered destitute by the illness and often with few or no coping strategies. Assistance to the dying is not counter balanced by assistance to those living and well with HIV. Further, because on the whole these programmes are for the terminally ill, the range of support and counselling that can be given is narrow. Most people are too ill to take care of themselves or their families, to provide for them or to feed them. They are too sick to be able to do anything to prepare their children for their future, to set their affairs in order or to pass on their knowledge to their families or their colleagues. Thus most national HIV programmes are stretched between prevention and the care of the terminally ill and few achieve the synergy which can arise when the infected well are included. Most programmes do not reach the majority of those affected by this epidemic - the infected well and those who love them. These people remain untouched, unacknowledged and without help. In some countries they constitute 20 or 30 per cent of the adult population, in some communities 40 or 50 per cent. In Africa today there are possibly seven or eight million or more HIV-infected and well men and women who do not know their infection status. The majority of them are married and supporting families. Most are productively active. Most do not want to know their infection status. However, a number of studies are now showing that a significant exception to the latter statement are widows and many youth. The questions I want to pose today are: Is it in the national interest to motivate people to know their infection status? Could it be in people's own interest to know? If these questions are answered in the affirmative, then there will be a need to radically revise national priorities and donor policies. What happens when people do not know their infection status and do not want to know? Is this a significant contributory factor to the blanket of silences? Does it increase fear, anguish and apathy? Do others feel like one rural woman in Uganda who described herself as "crippled" by not knowing? Does it increase an individual and a collective sense of powerlessness? Do all these essentially psychological conditions prove a serious constraint to behavioural and attitudinal change? As of yet there are only partial answers to these questions since few studies have raised them. But those that have would seem to indicate that they may be answered in the affirmative by many people. However, a number of studies have shown that not knowing and so not talking has meant that children are unprepared for the loss of their parents and that parents have not planned for their future. Studies recently carried out by FAO in Eastern and Southern Africa have shown that where people do not have access to this information, where they feel unable to talk about the eventuality of their deaths, whole bodies of knowledge relating to agricultural practices and agricultural processes can be lost. Anecdotal evidence from a number of countries have shown that fear of their status coupled by a reluctance to speak has meant that skills and experience relevant to industrial and financial management of firms and government departments have been completely lost and the opportunity for training of replacements missed. Thus, particularly in more seriously affected countries, it could be in the national interest to create a milieu in which people would be able to find out their infection status and feel able to discuss this with their colleagues. This would make it possible to train replacements for those infected, to create opportunities for them to pass on their knowledge and experience, to restructure workplaces to make them less dependent on the skills of particular individuals. Furthermore, if there were evidence that knowing one's infection status could make it possible to live longer as a well infected person, this would assist in increasing their productive lives, increasing the return of the investment of their parents and the State in their education and training and, equally importantly, decrease the likelihood of future civil unrest, since these people could remain caring and providing for their families longer. Should the State decide that it wishes to motivate people to know their infection status, it would have to ensure that those who knew and were prepared to disclose this information were protected from stigma and discrimination before ensuring widespread access to voluntary testing and counselling sites. Why might a person want to know? For many women and men the overwhelming reason is a desire to stay alive and well as long as possible to care for, raise and support their children, to plan for their children's future and to provide for their spouses. In Uganda, men and women have used the time while they are well to pass on to their children their own income generating skills: subsistence or cash crop farming, beer brewing, weaving and cloth making, carpentry, and so on. Parents, particularly in urban areas, have opened bank accounts for their children and both men and women have made wills, often discussing their wishes with village or political leaders or with their family elders. They have taken the time to put their affairs in order before God and men. They have also used the knowledge of their infection status in sexual and fertility decision making. Often knowing one's infection status creates a will to live as long and as well as possible, particularly when one knows others who are living well and happily and as these long-term survivors of HIV infection become more known and studied. The creation of this will to live well and long is, perhaps, one of the greatest challenges that this epidemic offers to Africa. The length of time a person will live after infection is also influenced by whether or not they prevent themselves from being reinfected and by nutrition, exercise and lifestyle, including alcohol and drug use. It is directly influenced by the support and care they receive after being tested from their families, their carers, their friends and from other infected people and by whether they are in productive employment. Often HIV-infected people become HIV educators and counsellors. The length and quality of their lives will also be dependant on whether they have access to the treatment of common infections such as pneumococcal pneumonia, salmonella and TB. Hence their ability to live long and well as HIV infected, to continue in productive employment and to care for their families is directly dependent on the health care sector and its priorities. There are very few African studies on the impact that being tested for HIV has on people's lives. But a small recent study in Zimbabwe showed a gender difference in the impact, in particular in communication with one's partner after getting a positive HIV result. All the men who were married and living with their wives informed their wives of their results. All of their wives accepted their diagnosis, that is, accepted that their husbands were infected. All of the wives then went, themselves, to be tested. Both the husbands and the wives reported consistent condom use after diagnosis. Only those marriages with a previous history of marital discord broke up. All except one of the married women in the study informed their husbands of their diagnosis but only half of their husbands accepted the diagnosis and only half of the husbands went to be tested. Less than half of the husbands consistently used condoms after the diagnosis. As with the men, almost a quarter of the marriages broke up. Almost none of the single women tested told their partners since they were afraid of being stigmatised and of having their infection status known all around town. Less than five percent of the women in the study earned enough money to support themselves. This small study would seem to show the importance of motivating men to be tested and counselled. Their wives are more accepting of the diagnosis and there is more consistent condom use after diagnosis. Thus, creating a desire among people, and perhaps especially men, to know their infection status could help break through the barriers of fear and denial, could decrease the powerlessness of women to prevent themselves from becoming infected, could make people more active participants in national HIV/AIDS programmes and could lead to their greater empowerment, whether their results were negative or positive. In breaking the silences that surround this epidemic, families may better survive and cope and nations better control their destiny. CREATING THE POSSIBILITY OF A MOVEMENT FOR SOCIAL CHANGE For a movement for social change to come about, there has to be a shared cause or vision, a collective will to change and a sufficiently large group of people as its base. In Africa today, one of the most important challenges is to bring about a will to live, a will to live as an infected person, the will to remain uninfected and the will to live with and despite this virus which is silently and invisibly invading its communities. This first meeting of the network for African people with HIV and AIDS is the kernel of this social movement, embodying individually and collectively this will to live, a will to live the life that one has richly and fully, the collective will to bring an end to the stigma, rejection, discrimination, neglect, isolation, pain and fear that each of us has had to bear. The question I would like to pose is: how can we turn this gathering here today from a meeting into a movement, a movement for the changes that we talk and dream about, a movement of activism, of solidarity, of empowerment, a movement sweeping Africa, changing the fatalism and indifference to passion and concern? There are, perhaps, 220 million adolescents and adults in Africa today living in fear, the fear that they may be or soon will be infected. This is an awful lot of fear, a fear that need not be there. Among the 220 million, there are only, perhaps, at a guess, a quarter of a million who know their infection status, perhaps, only one-tenth of a million. Yet there are at least 8 million people in sub-Saharan Africa who are infected. Among those who know that they are infected, there are even fewer who have come to live with that knowledge. Most people in Africa die without knowing whether or not they are infected, even if they silently fear so. Reflect upon how you yourself came to know that you are infected. Few men get diagnosed as being infected. Some young men and women get diagnosed, still too often without their consent, when they are granted scholarships for overseas study, when they enter certain professions or vocations or donate blood. A number of women get diagnosed indirectly through a diagnosis of AIDS in one of their children. Most of the few men and women who know that they have AIDS are diagnosed clinically when they are quite close to death. Very few people in Africa have access to voluntary testing and counselling services. Very few people who know that they are infected have access to counselling, peer groups and other support services to help them learn to live with this knowledge. Very few countries have created the supportive ethical, legal and human rights environment required in order to be able to provide such services. Programmes of care and support are, for the most part in Africa, programmes for the terminally ill. They are to assist with the dying with HIV, not with the living with HIV. They are emotionally draining for the counsellors and carers since they work almost exclusively with the dying and those close to them, people often rendered destitute by illness and with few or no coping strategies. The kind of care and support that they can be given is limited. Most people are too sick to take care of themselves or their families, to provide for them or to feed them. They are too ill to be able to do anything to prepare their children for the future, to set their affairs in order, to pass on their knowledge to their families or colleagues or to be activists for change. Assistance to the dying is not widely balanced by assistance to those living and well with HIV, by programmes to assist people to live with the knowledge that they or someone they love are infected, yet well. There are so few people who have access to voluntary counselling and testing services or who wish to find out. Thus few National HIV/AIDS Programmes achieve the synergy and the energy which can arise when the infected well are included. Furthermore, those that are struggling to learn to live with this knowledge, to become the activists, are too rarely the politicians, the church leaders, the educated or the articulate. This epidemic requires a seemingly rare form of courage, a form of courage which each of you has. But there are too few people yet to create the base of a movement for social change. How can we change this, break through the stifling silence that has wrapped itself around Africa? Is this silence and paralysis inevitable where people cannot find out their infection status and do not even want to? Does it increase the fear, the anguish and the apathy? Do others feel like the woman farmer in Uganda who described herself as "crippled" by not knowing? Does not being able to find out increase an individual and collective sense of powerlessness? Why might a person want to know their infection status? Statements glibly made that people in Africa do not want to know their infection status have made me think back over my own experience. My husband, Bill, and I were living in Kinshasa, Zaire, when we began to suspect that he might be infected. He had grown up in rural Zaire and had spent much of his life in Zaire or elsewhere in Africa. We had been married less than two years and we had a baby son, John-William. Bill was a fine and much loved person. He was my companion, colleague, lover and husband. We had a very close and loving relationship. It was 1983 and there was no test and, in Kinshasa, virtually no access to information about progression, symptoms or treatment and little, mostly wrong, about life span. We lived with fear as a constant companion. Which means to say that we lived as if it were not true that he might be infected. We went about out daily lives as before the fear. Except in our lovemaking where the fear that he might be infected haunted us. Except in our love for each other where this fear kept confronting us with the possibility of the loss of this deep and satisfying love. Except that we would look at our little son and wonder how, if true, this might affect him. Except that we had planned to have more children. To others it was as if nothing had changed. They could not see the fear and we certainly could not have shown it or spoken about it without losing everything we valued outside of ourselves: our work, our friendships, our dignity. And anyway we lived in the hope that it might not be, that the fear was ungrounded. Fear and hope were tangled up inside us. It was a terrible time, living as if he were infected and as if he were not, unable to speak about these fears, dreading and hoping. We were in the same position as about 220 million Africans are today. It was cruel. As soon as he had begun to fear that he might be infected, Bill went out and bought condoms. I did not have to suggest, beg or negotiate and I may not have been able to if it had been left up to me. I have not been brought up to do such things easily. But, fortunately, I did not have to struggle with the fear of death in the act of love. Neither the knowledge that he might be infected nor the possibility of condom breakage had any place in our lovemaking. I was not making love to a virus, or to an infected person. I was making love to Bill. Yet sometimes the fear of pain and loss was unbearable and it was I that drew back his hand as he reached for the condom. I can understand those who have said to me that the condom becomes a symbol and a reminder of the death to come. I can understand those who have said: "I love him. What does it matter if I become infected too?" Or those for whom the edges blur, who sometimes, living so much within the epidemic, feel that they are already infected. Finally, a test became available and we decided to challenge the fear, to allow for the possibility that the hope might be justified. We wanted to know. In those parts of the world where testing and counselling is widely available, many people will choose not to know. Their right to this knowledge is respected, they could know if they wanted to, but they choose to live protectively of themselves and others, without this knowledge. This is a different psychological setting from a world where few, if any, can gain access to this knowledge. For many years after Bill's death, I choose not to know. I knew that I could not live with the knowledge that I was infected and facing the same future. I feared that I would give up, even take my life. But I had a son to raise who had already lost his father. I chose not to know. What happened when we found out that Bill was infected? The finding out was brutal. No counselling. No support. Just the result. There was no more hope. The feeling of hopelessness was overpowering. Bill was infected and there was nothing we could do about it. We were left with a sense of deep bewilderment, of absolute powerlessness. We struggled, mainly separately and alone, the only time in our life together that we were so far apart, to learn to live with this knowledge. Eventually it became clear to us that the only way to live with this knowledge was to go on living. We had stumbled through helplessness, distress, turmoil, impotence. We stumbled into living. How did we make that transition from the trauma of the diagnosis to living? Much of it had to do with the sort of person Bill was. He believed that life was worth living, that we together had much more happiness to find and that we had worthwhile work to do. He realized that not taking his life into his own hands was leading to a death wish, a sense of helplessness and hopelessness. It also had to do with my family and our friends. They too had to learn how to live with this knowledge and so they understood what we were facing. We helped each other. The living we found was simple enough: we did those things that we would have been doing anyway. We led full and happy lives. The reality of his infection had been acknowledged but placed in its proper perspective. And life continued. We had come back to living but our lives had essentially changed. I was never again to be without the knowledge that Bill was infected. It was not incapacitating, just constant; not a fear of death, not an anticipation of death, not any state of mind with respect to death. Just something intractable inside me as I went about living my daily life, a constant call to courage. We had made the journey to living within the epidemic. Pity had no place there. It is an emotion from outside looking in. We were involved, absorbed, challenged, laughing, learning, bickering together. Bill is dead and has joined the ancestors. His son and I keep him living with us, in our memories, in our hearts and in our lives. This is just one story of moving from the cruelty of fear to knowing that someone one loves dearly is infected, to learning how to live with that knowledge. It is a story of the will to live, of the ability to influence the quality and, perhaps, the length of one's life, of activism, of solidarity and of sexuality. The more stories we have the more we will know about the critical questions facing us: why would a person want to know their infection status? What happens when they find out they are infected? How can they be supported in making the transition to living with that knowledge? How can the group of people who are infected, active and well be expanded? And how can it be formed into a movement for social change so that we can all, the infected, the uninfected and the affected, live peacefully with this virus and with each other? These stories must be told but will not be if the story tellers or their children or families are rejected or in any way harmed by their telling.	These questions are a part of what you are here to talk about: the processes of empowerment and change through solidarity, activism and self-organization. Thank you for the honour you have given to me in inviting me to be with you on this momentous occasion, the birth of this Africa-wide movement for social change, a movement towards living with HIV and AIDS. "Breaking the Silences", was written for the Fifth International Conference on Women and AIDS in Africa, Lusaka, Zambia, April 1994. "Living With HIV: Creating the Possibility of a Movement for Social Change", was a keynote address for the First Conference of the Network for African People with HIV/AIDS, Mombasa, Kenya, May 1994.
Elizabeth Reid is United Nations Development Programme (UNDP) Resident Representative, Papua New Guinea. Before joining UNDP, she worked closely with community groups working within the epidemic in Australia and was responsible for the formulation of Australia's first National HIV/AIDS Strategy. She has extensive experience in development theory and practice in Africa, Asia, the Pacific, the Middle East and Latin America and the Caribbean. |
