HIV and AIDS: The Global Inter-Connection

INTRODUCTION

The HIV epidemic carries within itself forces of destruction and of healing. Which prevails will be the measure of ourselves and our societies. It has the power to tear asunder husbands and wives, parents and children, to cause people to turn on each other, to turn away from each other, to perpetuate acts of indignity and inhumanity. It will exacerbate poverty and render the rich poor. It will subjugate powerful and powerless nations as well as individuals. Its pain silences. The destructiveness of its forces is already being felt in affected families and communities as the epidemic unfolds. A refusal to believe, the resistance of the imagination, bleakness are all reasonable responses to these unfurling forces. The personal knowledge of this, the experience of its impact, a fearful vision of the future, create the tone of concern and the sense of urgency which can be heard in each of these essays.

These forces, and the fallibility of human nature, cause what Marvellous Mhloyi calls a conspiracy of silence. Fears and feelings remain unaddressed, loved ones become infected, children are born without thought for their future. In the ensuing pain, husbands and wives become estranged, families do not share their sorrow, children live in fear of the unknown. Wrapped in this silence, sexuality is expressed in mime, parents do not learn to talk to their children, colleagues are reticent to talk about the future management of their workplace, leaders do not find courage. The destructive forces within the epidemic thrive on secrecy and, as Herbert Daniel says, "public policies that encourage fear, shame, guilt and secrecy [become] the epidemic's accomplices".

An inexorable scenario unfolds after the virus has entered a family or community. Six thousand or more adults are becoming infected every day, through an act of love, pleasure or coercion, without being in any way aware that a cataclysm has occurred. Life continues and in its course, unwittingly, these people pass the virus on to others, including their spouses and children.

Thus, unlike wars or other significant causes of adult deaths, whole families are touched: both parents and one or more of their young children infected. Life continues, unsuspectingly, until one of them, often a child, falls ill. The trauma begins with a diagnosis of HIV or AIDS.

Pain is one of the two affective portents of this epidemic. The self-doubt, the anguish and the trauma are relentless. Am I also infected? Am I going to die? Are my parents going to die? Will I be blamed? Will my husband die? What will people say? How dare he? What will happen to my children? What will happen to me? "The first experience of this epidemic", observes Herbert Daniel, "is one of immense moral pain".

People usually learn that they are infected, the few who do, when they are terminally ill. There is little time to put their affairs in order, to make their peace with God and loved ones, to pass on knowledge and skills to children and workmates or to plan for the future of their dependents. There is no time to learn to live with the virus.

With the knowledge that their parents are infected or sick, children become insecure and fearful. What will happen to them? Then death robs them of one person they love, then another, then another, then more, leaving them with too much grief to want to go on living. They cannot live with the pain.

With the death of both parents, those remaining often have difficulty in staying together and in surviving. If they do not have the love and help of others, they become destitute, drifting into the cities, scavenging on the streets, turning to prostitution and banditry to live from day to day.

In a growing number of regions of the world, this is not the fate of a handful of families but of one-tenth of all families, in some communities up to one quarter or more. The fate of nations may soon hang in the balance with the possibility of the unbearable pain turning to flight, figurative or real, or brutal slaughter.

Glimpses of this future can be seen in the present of these essays: Omari Haruna Kokole's fear for himself and pain for his sister, the trauma that entered Aimée Mwadi's life when she decided that she did not want her husband to place her at risk of infection, Godfrey Sealey's scared and silent friends, the stories from Joan Ross-Frankson's unseen Jamaica, the despair of the young women with whom Ana Vasconcelos works and Theresa Kaijage's grieving families.

But the epidemic also has at its centre the power of healing, the lightness of hope, the sound of laughter and the quality of love. This is its second affective portent, a sign of prophetic significance. It has the capacity to bring out the best in people, as we see in each of these pieces. It brings new insights into human nature and interactions. For to understand and respond to this epidemic, one must understand daily life and human nature in all their complexities, contradictions, richness and diversity.

It challenges people to want to survive and to want others to do the same. It creates a will to live both in the infected and in the uninfected. "I have HIV and I am alive" is Herbert Daniel's celebration of his present, and his future. Paradoxically, perhaps, people are empowered by it. They begin to talk to each other, to speak out, to form groups and organizations, to dream a dream of a different life, a different future. They begin to break the silence.

Living within such an epidemic can be a challenging place to be. "We are not a hopeless lot", say Nick Deocampo and Jomar Fleras, "We are a nation of survivors who are resilient in the face of disaster". It is this pervasive quality which justifies the hope, permits the laughter. It is a capacity to cope, an adaptability in times of misfortune.

It is more than that. It is the transformative powers embedded in the imagination which make possible the sea change from what is to what needs to be. It is this that takes the silence, the fear, the refusal to acknowledge, all very human responses, and transforms them into the equally human responses of commitment and concern. The imagination introduces a sense of openness to self and others, to the world around one and to the limitlessness of the future. It breaks open the paralysis of silence. Reality is created by the imagination. This is the mystery of the imagination which is a faculty of the soul.

Thus, hope springs up again and again, despite the bleakness of this epidemic, wherever people care for each other, wherever love for family and concern for neighbour overcome fear, wherever one person reaches out to help another. This hope is not unrealistic. It is grounded in the discovery in self and others of a capacity to cope, a will to live, of compassion and the energy to live it. It is grounded in the imagination and it is the only thing that will be able to carry people through the relentless loss and pain to come. "Hope", says Ian Campbell, "is the basic building block of life."

One of the strongest demands in this book is for an ethical discourse to arise around the epidemic, a demand for moral principles to guide our thinking and our responses. Not an ethic of condemnation, of righteousness or of exclusion: too often the first resort is to isolate or to quarantine, to punish or to damn, as people struggle with feelings of contamination, disgust or difference. Compassion, caring, togetherness, empathy, community and support are the concepts evoked throughout this collection. "We must tap into traditional cultural values like the spirit of tulungan, which fosters concern and participation in any community undertaking. ... [And] the spirit of damayan, oneness in the community", assert Nick Deocampo and Jomar Fleras. "We must move away from the language of crisis and catastrophe that has permeated the discussion of HIV. We need to develop [a language] that emphasizes hope rather than hopelessness", argues Deborah Raditapole. "In the ultimate analysis", says Omari Haruna Kokole, "HIV is our collective disease".

A vocabulary of responsibility, intent, and, where appropriate, murder is demanded. "Countless women who have never had sexual relations with men other than their husbands have become infected as a result of his behaviour", are the words of Robert Mugemana but they are echoed in many of the essays. Legal systems which provide women with little or no recourse to the law or which punish the infected must be reformed. Furthermore, argues Marvellous Mhloyi, the inaction of governments must be sanctioned. The development of this ethical discourse must involve churches and faith communities as well as lawyers but must not be left to them, it is contended. Everyone is implicated and accountable.

The principles being sought are not so much couched in the traditional ethical vocabulary of rights and justice, but rather in ethical concepts such as concern, compassion, oneness, community and solidarity, terms which describe relations between and among people, rather than an attributes of a particular person. Thus, the pivotal moral concept emerging in these reflections is that of interdependence. "There has never been a time in modern society when human interdependency has been more critical to our survival", reflects Marvellous Mhloyi.

Within this ethic of interdependence, of concern and participation, there is a proper place for the language of rights, responsibilities and of justice. Indeed, the absence of this language, of these principles, in the public arena, particularly in national HIV/AIDS programmes, is lamented throughout the collection. Thus, for example, Shymala Nataraj highlights a serious lapse in professional ethics when the medical profession refused to disclose to a woman her HIV status and yet readily identified her to a journalist. Marie St. Cyr-Delphe argues that "by failing to make the education of Haitian males the priority, prevention policies essentially absolve men of responsibility while reinforcing the belief that HIV is a woman's disease". Deborah Raditapole argues that "this is an issue of human rights and laws must be changed and new legislation introduced in support of these rights". "I was dying", says Herbert Daniel, "from what I might call a social death, the absence of all human rights".

However, these concepts of rights and justice need to be embedded in an ethic of mutual support or interdependence. Many forms of interdependence are implicated. Each of them is named in this book.

The first is the interdependence of men and women. As so many of these reflections make clear, women alone cannot stop the spread of the virus. Nor can they bear alone the burden of its personal, social and economic costs. Practices which give witness to women's disempowerment must be changed: wife inheritance, property snatching after the husband's death, infibulation, incest, female infanticide, rape in marriage and elsewhere, dowry, and many others. Men must be involved and ways must be found to involve them. The problem, Margaret Mwangola counsels, is often best shared, rather than men confronted.

Not only men and women and husband and wives must be involved, but also their families. Stories are beginning to be told of relationships between husbands and wives changing, of young women refusing to enter into relationships without a commitment to protection. But these are still rare and isolated incidents. Most women feel unable to protect their lives and those of their children. Unless men and women can forge supportive partnerships of mutual respect and trust and unless they equitably share its burdens of sadness and pain, of care and counselling, the epidemic will never be overcome.

The second essential interdependence is between the affected and the not yet directly affected. The infected and those close to them are amongst the most powerful activists and agents of change the epidemic has drawn forth. They give us glimpses of how people can become empowered through trauma and tragedy. Without their voices, people will not be aware of the extent to which the virus has penetrated their families and communities nor of its impact on people's lives.

The affected provide us with role models, showing communities they can live without fear, with dignity, within the epidemic. They are helping people understand how to express intimacy, desire and sexuality in the age of the virus. The infected, and they are many, are perhaps the most powerful resource that nations have. Yet they will remain silent and hidden if, in speaking out, they are humiliated, rejected and discriminated against, if they are left alone without support and companionship. There can be no Them/Us in the shadow of this epidemic. As Herbert Daniel so eloquently argues, we are all affected, directly or indirectly, for we are all living within it.

The third form of interdependence is between this generation and the next. In its simplest form, this generation owes to the next generation the gift of life. For this we created them. Yet, as Noerine Kaleeba points out, too often it is the men of this generation who are infecting, at times brutally, the girls and young women of the next. We also owe the next generation the right to live a life worth living. Thus the silence and shame of this generation must be set aside, as Theresa Kaijage indicates, so that parents can talk to their children about being infected and pass on their knowledge and skills at making a living. In return, they are to be helped to remain alive to nurture and care for their children, and to be nurtured and cared for by them, for as long as possible. The next generation will have to give up much of life to care for and to fill in for the missing members of this generation, their parents.

The fourth form of interdependence is between communities and governments. Everywhere the virus spreads, individuals or communities respond. Their responses provide us with the hope that the epidemic can be overcome and with the inspiration and the understanding about how this might come about. But the responsibility to respond cannot be borne by individuals, families and communities alone. Governments must provide an enabling environment, in particular an appropriate ethical, legal and human rights environment, within which the responses can be sustained and must ensure that the required goods and services, condoms, voluntary counselling and testing services, STI services, etc., are accessible and affordable.

Community resources, volunteered time, food, firewood and insights shared, counsel given, transport provided, labour contributed, funds raised, children cared for, lie at the heart of a sustainable response. But these resources must be supplemented. They are not without end and are themselves depleted by the epidemic. They are not usually sufficient. Communities and their organizations know what additional resources they need to be able to continue. They must be empowered to be able to define these to others, select them, manage them and account for their use in appropriate ways.

There must be a social contract between community organizations and governments which clearly delineates the strengths of each, their rights and their responsibilities, and which provides the mechanisms and the means for them to communicate with each other, share their insights and experiences and work together. This social contract, formal or tacit, will need to be based on mutual respect and trust. This may not be easy but it must come about.

The fifth form of interdependence, so often highlighted in these essays, is between and amongst nations. The pattern of spread of the virus, which nations become affected, which individuals are infected and how quickly, is not unrelated to disparities between rich and poor nations and socio-economic stratification within nations. When will this be recognized and acted upon within the world community? The potential for the economic and social devastation of nations carried within this epidemic is becoming better understood. Certain nations may be brought to the threshold of destitution or destruction. Will the world community respond? Will the world community invest in the psychological support, the education and health of people and in the technology and technical assistance necessary for these nations to avert such catastrophes? Will there be global social safety nets established to allow nations being rendered dysfunctional by this epidemic to survive?

The closest the world has come to a global social safety net is the current system of development assistance. However, this system is fatally flawed for such a purpose, both in its inadequacy to meet current demands and in the pattern of its allocation, which is unrelated to poverty or to the preconditions of human development. Little is invested in education, health or employment creation. If overseas aid is to serve as a global social safety net, it will have to be based on principles of pertinency, adequacy and flexibility. Its priority concerns will need to be for human survival and human development, for the creation of a non-exploitative interdependent world.

In all these forms of interdependence, the polarities are between the vulnerable and the powerful, the dominant and the submissive, the centre and the off-centre or marginalized. The distinguishing feature of women, the affected, the next generation, communities and vulnerable nations is their disempowerment, their lack of control over their destinies, their lack of a bargaining position, of collective organization. It is the disequilibrium within which they live. Achieving new forms of partnership, new social contracts between these interdependent groups will itself require a societal transformation, the transformation of the assumed right to dominate discussion, to speak for, to represent, to control, into new, hopefully richer, forms of social relations.

The disempowered will have to become articulate, to organize themselves to bargain for and negotiate their rights, and far too often, their lives. It is not that women and young girls do not know what is happening to them, do not fear becoming infected. They are, or feel, powerless to do anything about it. "Who is there to listen to the silent cries of these women and wives? Often their voices go unrecognized within our communities", comments Deborah Raditapole. Eka Esu-Williams argues that exploitation, extortion, negative self-perception and societal condemnation ultimately disable many women working in the sex work industry. This they share, in one way or another, with most women and young girls, with men who have sex with men, with drug users, with many others affected.

Thus, a precondition for the recognition and the establishment of these forms of interdependence is the need for those affected to come together and to remain together. This can be seen in the tragic failure of the men who have sex with men in Godfrey Sealey's Trinidad to break through shame and secrecy to a sense of unity, to come to an understanding that they could be their own best support. Nick Deocampo and Jomar Fleras also observe that activism has been slow to build up in the Philippines among men who have sex with men because they are disorganized and divided by the same class divisions, racism and discrimination found in the heterosexual community. The acknowledgement of the need for those affected to remain together is also there in Patricia Burke's fears that Jamaica's already frail family structure will unravel, in the insights that Theresa Kaijage's work has given her of the importance to counsel both partners within a family and to link the care of the soon-to-be-parentless children to the support and care of their parents.

But this coming together, this organization of the vulnerable, must not itself create boundaries of exclusion or seclusion: who is one of us and who is not. The infected need the space and the time to talk to each other about being infected. But they also need to talk to their spouses and their children. Affected families and their neighbours need to talk. The community of those affected is everyone. Neither the weak or the powerful will be able to survive this epidemic alone. If the world is not to be divided, leaders will need to create the conditions for people to reach their own decisions rather than having them imposed upon them.

The loss and the pain associated with this epidemic are already for many too much to want to bear. But this too may have a positive aspect for, as Ian Campbell points out, in every crisis there comes a time of helplessness and a need for burden-sharing instead of burden-bearing. It is a time of truth telling, the end of painful silence, the beginning of closeness. It creates a basis for togetherness.

Thus talking becomes the basis for healing, the basic strategy for responding to the epidemic. This is borne out elsewhere. When the possibility of talking was created for some of the women who had survived the brutality of the war in Liberia, the act of talking made it possible for them to cry, to weep for their loved ones. Giving them food and clothing, they said, made little difference. It was through talking that they regained the will to live. And, as Shymala Nataraj points out, people want to be able to talk about these things, about not getting infected, about the fear of being infected, about loving, and making love to someone who is infected, about the fear of dying. They do not know how or where.

But truth telling is painful and difficult. The retreat into silence is inevitable, more so when sharing brings with it rejection and humiliation, a denial of dignity. This pulling back, of people and of nations, into a silent pain may occur again and again. The talking and the sharing may cease. But the pain and losses will not. They will continue to accumulate until, once again, the burden becomes too much to bear in silence.

The togetherness, the hope, the laughter and the healing of this epidemic are fragile things. They will need to be nurtured, safeguarded and encouraged. Shelters will have to be built for them, shelters where, in Ana Vasconcelas' words, people can come together to talk, bathe, rest, eat, dream, think and work out strategies for reaching heaven. And that heaven, she has shown in her work, is a voyage of self-discovery, a voyage to the strength that one needs to go on living life, to discuss one's problems, to get to know oneself, a voyage to oneself. A voyage of the individual and collective imagination.

Elizabeth Reid
New York
June 1994