Issues Paper No. 5

SHARING THE CHALLENGE OF THE HIV EPIDEMIC:
BUILDING PARTNERSHIPS
Elizabeth Reid

TABLE OF CONTENTS

Conceptual Complexity
Programme Imperatives
The Challenges to be Shared
The Partnerships to be Built
The Way
Acknowledgements
Biographical Note

Conceptual Complexity

There are two important characteristics of the HIV epidemic which need to be acknowledged and understood, by national leaders in particular, for they will affect and determine the nature of the response to the epidemic in the Asian and Pacific region.

Firstly, the epidemic is at one and the same time both a crisis and an endemic condition. It is a crisis because the speed of spread of this virus can be so awesome. Infection rates can, and have even in this region, increased from two per cent to 25 per cent in adult populations in less than four years. There is no reason to assume that this is not happening in this region. Before people are even aware that they are surrounded by infected family and friends, their communities have been deeply penetrated. This fact alone should be sufficient for the epidemic to be viewed as a calamity, albeit too often invisible in its early stages, as much in need of an immediate response as the invasion of one country by another. For war nowadays rarely has the toll in human lives that this virus is causing and will cause.

That it is an endemic condition may best be simply illustrated by the fact that, even if in an affected country there were to be no further cases of infection as from today, the pain and trauma of the deaths of those already infected will continue for the next twenty years and the social and economic repercussions of their deaths will continue on for decades and generations after that. We know that nowhere in the world is the spread abating or even slowing down. Each day of continuing spread adds to the ramifications and duration of its devastating impact.

Both dimensions, the epidemic as crisis and the epidemic as endemic, need to be recognized. Each has its own appropriate responses.

Secondly, the epidemic manifests itself both as a specific problem but also as a pervasive one. Its specificity is revealed in its associated morbidity and mortality, in increasing numbers of people, mostly healthy, productive young women and men, getting sick and dying. The response of the first decade of the epidemic addressed this quality of the epidemic. It focused on the epidemic as a health crisis and on its ramifications for health service delivery.

However, the repercussions of these deaths will permeate and affect every facet of human life and national development, more so in countries where men and women are infected in more or less the same numbers. The causes and the consequences of the spread of the virus embrace poverty and wealth, disempowerment and influence, well-being and disease, deprivation and development, trust and bad faith; the very way we are as human beings.

Both of these dimensions of the epidemic, its particularity and its ubiquity, must also be recognized. Each of these too has its own appropriate responses.

Thus this epidemic is conceptually complex: at once a crisis and an endemic condition; at once a specific issue and a permeating one.

Programme Imperatives

These two characteristics of the HIV epidemic impose a set of imperatives upon us:

• the imperative of an effective response;
• the imperative of a sustainable response; and
• the imperative of a coordinated response.

The prerequisite of an effective response is a common understanding of the nature of the epidemic, which takes into account the above two characteristics, and a shared vision of the way forward. This we do not yet have. This should not surprise us for the epidemic is a new and complex phenomenon for which there is no likeness in living memory, not one drawn from war, not from disease, not from natural disasters nor from man-made ones.

This is not to say that we are blindly groping. We are doing what we know needs to be done while we search for new and more effective ways to respond. The more we share a vision of an effective way forward, the more coordination and the building of partnerships will naturally follow.

The second imperative is that of a sustainable response. The commitment and contributions of affected individuals and communities have yet to be recognized or valued but they are extensive. They lie at the heart of a sustainable response to this epidemic but in most cases they need to be supplemented by further human and financial resources. The closeness of these individuals and communities to the problems and needs created by the epidemic generally ensures that their responses are appropriate. Similarly, governments are increasingly beginning to allocate national resources to the epidemic although in most cases they still have to be persuaded that it affects all aspects of societal development both now and in the future.

The required human and financial resources must be available for effective responses. However, these responses must also be ranked in order of effectiveness since resources, whether of individuals, communities, nations or of external support agencies, will continue to be limited and will themselves be reduced by the epidemic.

Thus priority must be given to strengthening national capacity to ensure that these resources, and that of the external support agencies, are used in the most effective manner. There is not time and there are not sufficient resources for ill-conceived, inappropriate or ineffective responses. The selection must be ruthless for the demand on resources, both human and financial, will continue and increase inexorably for decades. Communities and governments must have the ability to monitor, assess and evaluate their interventions and to modify, redesign and expand them.

Where the response to the epidemic is effective and sustainable, hope is brought into being that the desolation and distress of this epidemic can be eased, a hope that can turn back the tides of fatalism and despair.

The third imperative, that of a coordinated response, means that we must build the partnerships required to ensure that the search for effective and sustainable policies and interventions is an ongoing process and that duplication is minimized. Such partnerships are needed among the community groups responding to the epidemic, between such groups and government, among government ministries, between the public and the private sectors, among external support agencies, especially within the UN system, and between donors and countries.

The Challenges to be Shared

Before we elaborate further on the partnerships required by this epidemic, we need to identify the challenges facing the Asian and Pacific region that we are being called upon to share.

• I want to identify just three such challenges:
• the challenge of making the invisible visible;
• the challenge of creating an ethic of compassion; and
• the challenge of placing people and their communities at the centre of the response to the epidemic.

The first challenge, to make the invisible visible, is a clear imperative in this region. We must find the means to better understand and make known the speed and the surreptitious patterns of spread of the virus. Surveillance systems tell us where the virus has been but we need predictive systems that map out for us where it is likely to go. Understanding the factors which determine this will enable us to put faces to the figures, to see ourselves in its path or in its wake.

But more than just numbers and silhouettes of those affected need to be made visible. Those living within the epidemic, those at the forefront of change, must create a new language that makes more visible the new realities of life in the post-HIV era.

This is already happening in two important aspects of the epidemic. Firstly, we are beginning to develop a language of optimism: affirmations of the possibility of behaviour change, of the centrality of compassion and concern, of care and commitment. Secondly, we are developing a language of process rather than of interventions, of people as responsible actors rather than manipulable objects. It is a language of empowerment, of participation, of listening and talking, of counselling, of deciding together.

However, there is still a silence, an inarticulateness, about the dark side of the epidemic: the doubt, the trembling, the uncertainty, the distancing, the denial, the fear. We do not yet have a language that reflects the reality of living with the knowledge that one is infected or that someone one loves dearly is infected: the constant companion of mortality, the sadness, the tentativeness of desire, the longing for love, the stripping raw of self by death after death after death of partners, of children, of childhood friends, of companions.

There is another silence around a central reality of this epidemic: that it evokes a wilderness of emotional and psychological states with whose very existence we are uncomfortable, for which our vocabulary is too limited and which we are reluctant to acknowledge and express. These include hatred, anger, shame, guilt, humiliation, grief, indignity. There is a deep unease which permeates families and societies about using a language of sexuality, of mortality and of vulnerability.

Even those emotional states we value and which are central to our belief that the epidemic can be overcome, we hesitate to publicly acknowledge and express. We lack a familiarity of usage of words such as care, compassion, happiness, humility and wonder.

For that which is invisible about this epidemic to be made visible, we must spin this language, weave it into our lives and grow strong in the courage to use it.

The second challenge we face is to create an ethic of compassion. Let me begin by delineating what this is not. Compassion is not pity, which strips one of dignity and individuality. Compassion cannot be expressed in authoritarian relationships structurally based on inequalities of power: doctor and patient, men and women, parent and child, caste and class. For this reason an ethics of compassion will threaten conventions of distancing and objectivity, norms of control and domination, prerogatives of position and wealth.

An ethic of compassion will value concern over ambition, connectedness over individualism, closeness over control, mercy over judgement. An ethic of compassion will require the presence of men who pay attention to daily life.

An ethic of compassion is not a matter of appeasing hunger, of providing shelter, of resolving conflict. These are as compatible with charity or pragmatism as with compassion. Rather it involves seeing ourselves as one with others, our lives essentially intertwined with their lives.

An ethic of compassion will bring a particular focus to our work. It will add a sense of urgency to keeping people uninfected. It will place high importance on keeping those affected by the epidemic, the infected, those who love and care for them and those who survive them, within our families, workplace and communities.

Keeping those infected alive for as long as possible will be not only an economic imperative but also a human imperative for even when sick and dying, those infected can nurture their children, touching them, smiling, talking, keeping them company, and can pass on to them their own skills for economic survival, be they farming, brewing, fishing, street selling, cobbling, weaving, repairing or whatever.

Helping those infected to die with dignity through, for example, the treatment of opportunistic infections or the provision of shelter and assistance, will reduce the psychological trauma of the children left behind. Their memories will be of the person they loved not of their unseemly condition.

The third challenge is that of placing people and their communities at the centre of the response to the epidemic.

Again this can be defined by contrast. It means that primary focus will not be placed on technologies (condoms, test kits, etc.) or on interventions (education campaigns, STD services, for example) but on the initiation of processes whereby both individuals and communities can change and through which agents of change are created. The technologies and interventions will become the handmaidens of, not the masters of, change, there to be called upon as required.

Placing people at the centre of the response to the epidemic will enable that response to reflect and build upon the complex nature of people's daily lives and to address their needs in a cohesive manner. It will begin the process of breaking down a compartmentalized development approach to essentially interlinked conditions: poverty, disempowerment, disease, subordination, illiteracy, land ownership, to mention a few, and HIV infection. It recognizes and accepts that little is simple in the face of this epidemic.

An approach that values and builds on the vagaries of human life and human nature will lead to realistic and therefore sustainable responses. It will provide the basis for the hope, the belief, that we are not powerless in the face of this pathogen and that we will indeed overcome the epidemic and its consequences.

The most striking feature about this epidemic is that individuals and communities have been mobilized and empowered by it. People are speaking out; community groups are coming into existence. We see this already in this region. This conference has honoured Dominic de Souza. There are many other courageous men and women like him in our communities, speaking out, working with others. However, in a non-supportive environment, too often the impact of such individual initiatives wanes over time as people move on or die or groups lose their initial momentum.

The Partnerships to be Built

The energy, vision and commitment of these agents of change needs to be transformed into an active force for change, a force which can transcend the particular and permeate communities and nations. For this to happen, four social contracts or partnerships must be built.

The first partnership must be a new social contract between men and women.

The HIV epidemic and its impact will only be overcome if men and women begin to forge true partnerships of mutual respect and trust and of equitable sharing of the burdens of sadness, pain, care and support created by the epidemic. Men and women must seek to establish the kind of honest communication about sexuality and sexual behaviour needed to prevent the transmission of HIV in their partnerships. They must work to restructure the sexual relationships in which they take part.

Women alone cannot stop this epidemic nor care for its sick and its survivors. Women alone cannot bear the burden of its psychological, social and economic impact. Nor should this be expected of them. To do so would be to build in the certainty of failure. Not because of any failing in women, but because sexuality, love and coping are essentially shared experiences.

Changes in individual relationships between men and women will occur only in the context of the emergence of a new social contract, not one simply governing men's or women's behaviour, but one which changes what it is to be a man or a women. The social contract must encompass the way we nurture and raise our children, the way society constructs its gender archetypes. It must further allow for community explorations of the appropriateness of accepted community values and standards of behaviour. Such a social contract must be supported and reaffirmed by laws, policy, budgetary priorities and programme design and delivery.

The family in all its diverse forms thus becomes the basic nexus of change. For although individual men and women can decide on ways to protect themselves from infection, the likelihood of this happening and being sustained resides in factors which long precede adulthood and sexual activity. They have their origin in how people are brought up in family life, whether that be an extended or nuclear family or another environment.

It is in the family context, from birth, that personalities are formed, gender identity is created, moral values are instilled. In particular, it is in families that boys are brought up to be boys, and girls, girls, with their attendant sexual and social identities, attitudes and behaviours. We know that self respect, self confidence, respect for others and an ability to talk about personal and intimate matters are all characteristics which help people to remain uninfected.

Thus it is within family contexts that the basic prevention strategies must be put into place. Love and nurturing must be given to both boys and girls so that they may grow into independent, confident human beings, able to form respectful and non-violent relationships, whatever their sexual orientation may be. Parental-child discourse must be developed on bodily care and sexuality and strengthened on community norms and moral values, especially with regard to respect for self and others. We must change the ways that girls and boys are raised so that as adults they will be less likely to put themselves and others at risk of infection. This will require significant changes in the social construction of masculinity and femininity.

These gender paradigms must be reconstructed in particular ways. The new paradigms should lead to the greater valuing of compassion, concern for others and love of family in men and, for women, in a simple recognition of their value and worth. It is hard to reconcile the oft claimed valuing of women, even as mothers, with the widespread acceptance of female infanticide or the mortality rates associated with pregnancy and childbirth, as high as one woman in 21 in some parts of the world: 1 million women per year. New patterns for the sharing of the responsibilities and joys of women's lives must emerge.

But families individually do not determine cultural meanings, social customs or community values. They inherit, accept, respect and instill them. Thus, for families to change, communities and societies must also change. The new social contract will therefore require a radical reassessment by societies of the very way men and women see themselves and each other, of the way they relate as husband and wife, lovers, brothers and sisters, parent and child, as partners, colleagues and friends.

The second partnership must be a social contract between the affected and the not yet directly affected.

The infected and those close to them are amongst the most powerful agents of change in the world today. They can give us glimpses of how we can peacefully co-exist with the virus, of how we can become empowered through the trauma and the tragedy of the epidemic. Within the desolation of this epidemic, they give us snatches of laughter and happiness. They can help us explore and better understand the nature of intimacy, desire and sexuality in the age of the virus.

But these insights of the affected will not be shared, this gift will remain ungiven, if, in the sharing, the affected are stripped of their self esteem and dignity, subjected to humiliation and discrimination, left alone in a hostile limelight without support and companionship.

These insights, these glimpses of the world within the epidemic, must be shared if our response is to be grounded in human experience, if this experience and knowledge is to shape and reshape theory and practice.

The stories of the affected provide access to lives which are subtle and various, which present the experience of living within the epidemic in the complex, interrelated way life usually asserts itself. The stories bring to light different perspectives, different points of view and so make the understanding of how to live with the epidemic accessible across class, gender, educational and lifestyle barriers.

Women are more aware of the dynamics of gender in their daily lives. Thus how gender affects the epidemic emerges more clearly in their stories. Life situations such as being infected or caring for someone infected can be understood only if gender roles and interrelationships are taken into account. Women's stories both present and interpret the dynamics of power between women and men and the relationship between the individual and society. They provide glimpses into men's lives as well as into women's lives and relate individual agency to social and economic structures.

Stories, however, do not capture systems of relationships which affect individuals but whose locus is beyond the individual and her or his realm of vision. The relationships between poverty and infection status may form a critical part of the story but the relationships between structural adjustment programmes, for example, poverty and the tragedy of being infected may not. Hence, stories need to be complemented by system level analyses. A full understanding of the nature and impact of the epidemic requires both kinds of analysis.

This partnership between the affected and their communities is critical. It is an acknowledgement within the community that the epidemic concerns the community as a whole and not just certain individuals perceived or assumed to be at risk. The absence of this social contact favours discrimination, marginalisation, denial and infection. The Them/Us mentality which dominates in the absence of this partnership has, sadly, too often characterized perceptions of and responses to the epidemic. There is no Other in the shadow of the epidemic. We are all there.

This second partnership or social contract, once in place, will enable the creation of a supportive milieu that encourages the affected to speak out, tell their stories, reflect on their lives and hopes and help us all to live peacefully with this epidemic.

The third social contract must be between communities and government.

The responses we have seen occurring within affected communities provide us with the hope that the epidemic can be overcome, and the insights into how this can come about. These responses are universal. Wherever the virus has spread, communities have responded, to provide care and support, to stop further infection, to assure the rights of the affected, to minister to spiritual, emotional and physical needs.

But individuals, families and communities cannot carry this epidemic alone. There must be a social contract, a partnership, between governments and affected communities. Governments must provide an enabling environment that will evoke, nourish and sustain these responses. This enabling environment must include national policies that acknowledge the centrality of community responses, a body of legal and human rights laws that respect the principles of non-discrimination and respect for the rights and dignity of affected individuals, mechanisms for interaction between government and communities, and assistance, as required, for programme design, delivery and financing by communities.

The need for additional resources for this epidemic is frequently mentioned. Whilst it is clear that external resources are needed, it is important to stress that the initial financial resources mobilized to respond to this epidemic are invariably those of individuals, families and communities. As yet, these remain unrecognized and unquantified. We must name these contributions and quantify them for, sadly, this is the way that most people recognize and establish the value of such actions.

These resources - peoples' volunteered time, the food, means and insights they share, the transport provided, the labour contributed, the funds raised - lie at the heart of a sustainable response.

Yes, the resources must be supplemented. They are not without end. They themselves are depleted by the epidemic. They are not, always or usually, sufficient. Communities know what additional resources, human or financial, they need for sustenance and growth. They need to be empowered to be able to define their external support requirements, select them, manage them and account for them in appropriate ways whether these resources come from national or international sources.

Mutual trust and respect is a sine qua non for a social contract between communities and their government. This may not be easy for either but it must come about.

The fourth partnership must be a global contract.

As the epidemic deepens, its devastating potential impact on all aspects of human life and national development is becoming better understood. Certain nations may be brought towards the threshold of destitution. Will the world wait until this stage is reached in some countries? When will there be a global response? Will the world community provide the resources for investment in the education, health and social welfare of people and in the technological development required to enable these nations to continue to function? Will there be global social safety nets to allow nations rendered poor by this epidemic, and the poor within nations, to survive?

The working of global trade agreements and markets have increased the disparities between rich and poor nations and rich and poor individuals. At the national level, many governments try to offset such tendencies by redistributing income through systems of progressive income tax and by supplementing this with social safety nets to prevent people from falling into poverty and absolute destitution. No such systems exist at present at the global level. 

The closest the world comes to a global safety net is the current system of development assistance. However, this system is fatally flawed, not only in the way it is programmed, but in the inadequacy of its extent, and because its allocation is unrelated to levels of poverty. Less than 7 per cent of global aid is spent on human priority concerns of basic education, primary health care, family planning, safe drinking water and nutritional programmes. Only a quarter of overseas aid flow is earmarked for the ten countries containing three-fourths of the world's absolute poor. In fact, India, Pakistan and Bangladesh contain nearly one-half of the world's poor but get only one-tenth of total aid.

Twice as much development assistance per capita is given to high military spenders among the developing world as to more moderate military spenders. The international financial institutions, like the World Bank and the IMF, are now taking more money out of the developing world than they are putting in, adding to the reverse transfer of around $50 billion per year to the commercial banks.

If overseas aid is to be able to serve as a social safety net for the world's poor, it will have to be based on principles requiring that aid should be directed to priority concerns for human survival and human development.

These four social contracts or partnerships are essential to an effective sustainable response to this epidemic. They will be difficult to forge and will not come about without the commitment and courage of our leaders and friends. There is an ever increasing urgency to embark upon the endeavour to build them.

The Way

At the heart of this epidemic, either there can be violence and fragmentation or there can be stillness. In the hearts of those yet personally untouched by it, it is the same. It is the same in the hearts of those affected.

For all of us, knowing how to live with HIV can bring a certain stillness to the centre of our lives. It can still the violence and the fragmentation, the fear and the denial. It is this stillness which creates the possibility of living.

We need to reach out to each other, as one human being to another. There can be no Them and Us if this epidemic is to be overcome. We are all seeking to pass from untruth to truth, from darkness to light, from vulnerability to ease.

There is a special truth and light, a special love and laughter, which can be given to us by those who are courageous enough to tell their stories. We must learn to share in their sadness and hope, their tears and laughter. We must partake of their dignity and courage.

That we have gathered here at this Congress bears witness to the fact that we are pilgrims, engaged upon a voyage of understanding.

This voyage will require from each of us truth, compassion, faith, wisdom, respect for others and courage.

It will be a voyage of understanding what is, of understanding reality, not of asserting what we would like to be the case, what we would prefer to believe.

It will be a voyage of sharing, the sharing of a sense of mystery, of a burden of sadness, of the pain of care, of the laughter of life.

It will be a voyage to change for each of us, for none of us are untouched by this epidemic.

It will be a voyage of the heart and the mind to communities of concern and commitment.

It will be a voyage through pain, through the dark side of the epidemic, with hope.

Acknowledgements

This paper was a plenary Presentation to the 2nd International Congress on AIDS in Asia and Pacific, New Delhi, 8-12 November 1992.

Biographical Note

Elizabeth Reid is a Senior Adviser, Bureau for Policy and Programme Support, United Nations Development Programme (UNDP), New York. Before joining UNDP, she worked closely with community groups working within the HIV 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, including programme design and evaluation in Africa, Asia, the Pacific, the Middle East, and Latin America and the Caribbean.

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