BREAKING THE SILENCE: LIVING WITH HIV/AIDS
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. The second program focus of most national HIV/AIDS programs 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 counseling sites. Thus programs of care and support are, for the most part, programs for the terminally ill. They are to assist in the dying with HIV, not in the living with HIV. They are not programs to assist people to live with the knowledge that they or those they love are infected. Many counseling, care and concern programs 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. Home-based care programs, 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 center or services for children. They are also emotionally wearing for the counselors and care givers 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 programs are for the terminally ill, the range of support and counseling 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 programs 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 programs 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 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 answeredin 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 spouse. 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 challengesthat 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. 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 programs 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.
