Issues Paper No. 20

HIV Prevention and Development in Multicultural Contexts
Elizabeth Reid

Acknowledgements
Biographical note

Listen to these words: 

We have no desire for revenge. We harbor no hatred towards you. We, like you, are people, people who want to build a home. To plant a tree. To love, to live side by side with you. In dignity. In empathy. As human beings. 

These words could have been said by people living with HIV, those infected themselves and those close to them. They could have been said to those who infected them, or to those who, knowing or suspecting that they were affected, humiliated, or rejected, or stigmatized, or in other ways stripped them of their dignity and their livelihoods. 

Listen to the words again: 

We have no desire for revenge. We harbor no hatred towards you. We, like you, are people, people who want to build a home. To plant a tree. To love, to live side by side with you. In dignity. In empathy. As human beings. 

These words could have been said by women to the gatekeepers of the cultures which are structured by gendered relations of dominance and subjugation, to the men - the fathers, brothers, husbands, sons, pastors, employers - who limit women's ability to express themselves as decisive, autonomous, free-wheeling, laughing, effective human beings. They could have been said by women to the husbands and sexual partners who infect them or who wantonly disregard their desire that they and their children remain uninfected. 

These words could have been said by the poor, the homeless, the abused of our societies, those stripped of their rights to learn, to be well, to be trained, to cope, to be nurtured, to shelter, to have the means to create a livelihood, and so are forced to survive in whatever ways they can. 

They could have been said in any situation of entrenched differences, of warring social groups, of culturally mediated prejudice, of ingrained patterns of domination of whatever form. But they will only be said by the dissenting voices, by the prophets and the peace makers, by those concerned with transforming the present into a better world. 

They were in fact said by Yitzhak Rabin, in Washington, at the signing of the Israeli-Palestinian declaration of principle in September 1993. Poverty, he also continually stressed, is the breeding ground of terrorism and so the building of new relationships between people is inseparable from human development. He was also to say, prophetically, a year later, again in Washington, that hatred of others sows the seeds of hatred amongst yourselves. 

Why are these words, drawn from a particular multicultural context, so relevant to our response to the HIV epidemic? The answer, I would like to contend, lies in an understanding of the role of empathy in the moral response to difference. Group differences are not universal, static and fixed but rather ambiguous, relational and shifting. But difference is threatening and violence to others often comes about because of a feeling that they are different. Conditions which foster and create violence also spread the epidemic. Acknowledging difference whilst creating a common purpose, creating solidarity, is difficult unless interpersonal understanding and communication is made possible and this is done through empathy.

Living within the horror of this epidemic, we too want to plant a tree, build a home, to love and to live as human beings. Yet so feared and fearful is this epidemic, that even the thought of it creates difference. So often the initial reaction within our different settings is to locate it somewhere else:

They are at risk

They are affected.

We need to design programmes to educate them .

We need to protect them.

In saying this, we make clear that we are not them and the epidemic is not amongst us.

And so we are different from them.

The Them/Us barrier of difference has been erected.

 An even more emotive, impenetrable barrier is erected between those known to be infected and others. Processes of exclusion are set up, singling out those brave enough to talk about being infected or those whose right to privacy has been abused. Reactions of stigma, rejection, humiliation and discrimination arise from and reinforce these patterns of exclusion. Existing patterns of entrenched difference, whether of lifestyle, of sexual expression, of gender, or of socio-economic stratification, become further ingrained. 

In these ways, the epidemic tends to undermine social cohesion and to create contending social groups. 

Listen to this conversation. Let us join Helen, Stephan, Miriam, and other friends who are sitting around in the evening, chatting over a glass or two of beer. Helen, not long returned from her fields, is presiding behind the counter. The setting is rural Uganda. 

Stephan, smartly dressed, an electrical technician, exclaims that he wants to marry. But, he laments, none of the possible brides is going for less than five cows and his father says that times are hard and he cannot afford more than two and so his son must wait. 

Bitterly, Stephan points to the Health Ministry anti-AIDS poster above the refrigerator: Love Carefully! Stick To One Partner! Why, he demands, is there no poster telling parents how to behave. 

Well, ventures a visitor from outside, the notion of buying a wife is barbarous and must change if women are to be equal. 

You don't understand, bursts out Helen, you think a woman feels bad if she's exchanged for cows or money. But if there's no exchange she feels worth nothing. 

Stephan raises his voice: I only want my own woman. I'm not crazy, I know all about AIDS. With a wife I wouldn't live risky. Why must men pay to make women feel better? 

That's bad thinking, retorts Helen. Women must feel valued or we can't look for equality. If my husband got me free, I couldn't start a revolution. A free bride's a slave C no worth, no status, no respect. Everyone knows my bride price was ten cows. When I talk revolution they listen, with respect. 

So you see, Jill smiles softly at the outsider, for us, women's liberation has to start from where we're at, not where you're at!¹ 

And so the evening ends but the problem remains unresolved. Stephan and other men in Bushenyi remain bitter and scared. Helen and the other women continue to demand that women be valued. Similar conversations with different details are occurring in communities around the world. Contending social groups - in this case, men and women - have been created and tensions and differences exacerbated. 

This story captures the superficiality of analyses which couch the response in terms of gender analysis - improving women's status or giving women voice; of economic growth - increased per capita income; or of HIV specific initiatives - transmission and protection information and access to condoms. Helen and Stephan are living the complexity of the situation and, for their sakes and that of others, there is an urgent need to find a way forward, a means of each understanding and appreciating the perspective of the other and of being able to reconcile their differences. We all have such stories in our own lives, particularly, perhaps, in our relationships with our children, where empathy is critical to the capacity to respond to difference. 

In situations of entrenched difference, whether they be the Middle East or Rwanda, whether it be families or communities torn apart by destructive reactions to the epidemic, it is empathy that creates the possibility of a way forward. For empathy allows the coming together across barriers of difference and creates the possibility of responses of respect and inclusion.

As Yitzhak Rabin went on to say: 

We wish to open a new chapter in the sad book of our lives together - a chapter of mutual recognition, of good neighbourliness, of mutual respect, of understanding.

The basic question in both situations, the response to the HIV epidemic and to situations of entrenched prejudice and contending cultural identities, is how do we create and strengthen the capacity to understand difference in such a way that change is possible?Empathy is a skill or capacity and thus can be instilled, taught and developed. It is the skill through which compassion, as distinct from pity, can be exercised. It creates the possibility of solidarity and solidarity allows for mutual respect and trust whilst recognizing and accepting difference. Community, intimacy, trust, solidarity, respect and compassion do not spring into existence. They need to be created.

 Thus recognition of the centrality of empathy in the response to the HIV epidemic is a recognition that we are connected in dense ways by bonds of affection, dependency, concern, kinship and reliance and that if we scorn or neglect these bonds we will not survive. It further recognizes that in the face of this epidemic we are interdependent and so to be able to survive what lies ahead of all of our communities we must find new ways of relating amongst ourselves, between men and women, between those affected and those not yet directly affected, between parents and children, between communities and government and amongst nations. The centrality of empathy is the centrality of caring, caring about oneself, caring about others, caring that the epidemic not destroy our desire to build a home, plant a tree and to live and love in dignity as human beings. It is thus a moral capacity. 

At the beginning of the response to the epidemic, our understanding of what was needed was different. The critical questions were considered to be cognitive: What do we know about the virus and its transmission? How does this knowledge get transmitted from us to others? As a result, particular emphasis was placed on the production of educational materials - posters, pamphlets, manuals, books, etc. - and on the transmission of information, whether by modern or traditional cultural media. 

This demanded deliberative patterns of reasoning. Conclusions had to be reached - this was safe, that not, this uncertain - so that they could be advocated, written down and passed on by the experts. But this approach ignored the very human fact that when answers are presented, there are no questions. However, introspection, reflection and self-questioning are essential to movement and change. 

Access to information and to knowledge is critically important to communities, to each sexually active person and to those whose own behaviour or that of others puts them at risk of infection in different ways. This is not at issue. Thus cognitive processes - the gaining and the transmission of knowledge - are necessary but, we have learnt, they are not sufficient. We have to strive to produce and to enable, not just knowledge but also change. 

But there is a cognitive process that is essential to empathy. It is the interactive and interpretive process of understanding. It is exercised through the capacity to listen and to contribute and to question in ways that lead to dialogue and discussion. It is understanding that leads to conviction and engagement and which must form the basis for action, for change.

Thus the critical processes have come to be understood as performative, but performative in a particular way, a way that is grounded in complex and sensitive processes of understanding and that reflects and accepts the affective content. This may better be captured as transformative: the catalyzing and supporting of processes through which people become engaged, personally as well as socially and professionally, processes which transform their way of being in and relating to the world. 

The questions are now being seen to be about how people become actively involved, whether it is in processes of reconciliation and healing, of peacemaking, or of commitment to an introspective, reflective and inclusive response to the epidemic. What are the transformative experiences and how do they come about?

The tragic recent history of Israel, and of countries such as Rwanda and the former Yugoslavia, show how the horror of an act or acts can lead people to initiate processes of moral reflection, to understand the terrible consequences that the neglect of the exercising of moral skills and capacities can have. But this most not be our only way forward. 

We are learning through living, sometimes wrenchingly, that where the rhetoric of vengeance, of hatred or of prejudice has been left unchallenged, where families and communities have not engaged in discussion and the search for consensus on difficult issues, havoc has been wreaked. We reflect our moral identity in our omissions as well as in our actions and attitudes.

Empathy is a mode of moral reflection in contexts of created and entrenched differences. It is a moral skill which enables the recognition and valuing of others. But the valuing of others essentially involves the valuing of and caring for self. Thus a particular type of nurturing and support is required, one that allows people to give and receive recognition. Moral reflection is interpersonal in nature for it develops and can be exercised only in relations of reciprocal recognition. As Prime Minister Rabin recognized, it is grounded in respectful connections with others. Recognition and understanding of self and others is essential for the moral courage to act. 

Let us look at the exercise of this capacity for moral reflection and for the valuing and caring for others in a particular setting of this epidemic. 

A little while ago, in 1991, three women were sitting talking. They lived in Matero compound, a poor neighbourhood of Lusaka, Zambia, a neighbourhood where more and more people are beginning to sicken and die. They had noticed that in the compound there was a growing number of families of children left to fend for themselves after their parents had died. They were children that they knew, children with whom their own children had grown up, with whom they played and went to school. They decided that they should discuss their concern with the other women of the compound and so asked the local parish priest if they could use the church as a meeting place. 

About thirty women turned up to the first meeting to talk about what was happening in their midst. One of the women had been to Uganda and talked reflectively about how orphans there were being cared for in their communities, rather than in institutions. Kwasha Mukwenu - Help Your Friend Who is in Need - was born and soon about 120 women were involved. They accepted that they all had other commitments and responsibilities, and so they needed to find a way to care for and look after these children that was manageable in the rhythms and demands of their daily lives.

 They felt that what the children most needed was the feeling that someone cared about what was happening to them, that there was someone that they could turn to for help and guidance, that there was someone there to ask the children how their day went, to touch them and hold them on their laps. And that it was important the children had a least one decent meal a day.

And so they divided the compound up into quarters and the women of each quarter look after the children within it. They felt that the orphaned children should know the "mother" who was looking after them. The children should feel that they belong in the neighbourhood and so should be cared for where they belong. 

After some time, most of the married women found it too difficult to combine the demands of husband and home with caring for the orphans. Kwasha Mukwenu today still has the original three women and has a core group of 30 women. All of them are widows. All have lost their husbands to AIDS. Many of the women know or suspect that they themselves are infected. They are themselves mothers. They care for 1,050 children in the compound. 

We visited them one lunch time recently in the church as they fed their children together with the children whose parents had died. They sat to talk with us afterwards. They explained that they had become engaged because they knew the children and they wanted to make sure that they were cared for. Sometimes, they said, they were very tired. And they worried about not managing to secure enough food, not being able to pay for the children's school fees, to find ways to train the older children in an occupation. Some of the older girls were going to the bars to find ways of helping their family to survive. 

Here is how they described what they are doing: 

• We are planting the seed of love in these children so that they will grow up to be caring persons. 

• We know that not all these seeds will grow but we have to put our faith in the future of these children. 

• Many of these children are very rough and difficult. They fight you. But it is because they are looking for love. They feel betrayed. They are deeply grieving. But we must have patience and keep on caring for them in the hope that they will come through. 

• By helping these children, we are also helping our own children for we want our children to know that in helping others lies the only hope for the future. 

• It will be these children who will in time look after our own children. 

Here empathy is manifested by these women not only in an intimate awareness of and attention to these children's lives and emotions but also to their own lives and their pain and limitations. Further, communication is understood to be not only a verbal dialogue but as much about touch and being there to listen, to counsel and to support. It is about being attentive to and discerning of others. In this, the women are being active moral agents, exercising the ability to perceive others in their own, different terms and to respond to their needs. This is a narrative of relationships that were already established in 1991 and which will continue well beyond the life of these women and of Kwasha Mukwenu. 

That this must be the core of HIV education and prevention was profoundly understood by the Israeli Minister of Education when he said last night that HIV education was not only about the transmission of knowledge about prevention but about the allaying of fears and the creation of tolerance and compassion and the ability to help those who need our assistance. The focus of our HIV education and prevention, care and support programmes is shifting to the exploration of how such profoundly moral skills and capacities can be strengthened and opportunities, the literal and metaphorical space, for their exercise created and encouraged. 

Thus empathy engages complex intellectual capacities along with affective ones. It is a loving regard, the paying of attention to people in the contexts and details of their lives

Moral understanding involves a blend of perceptive, imaginative, appreciative and expressive skills and capacities which make it possible for us to remain in contact with our own selves as moral agents and to hear and communicate with others across differences, to interpret wisely and to nourish each others capacity for attentiveness. Movements for personal and social change emerge out of this dynamic. 

Thus the critical question for overcoming exclusion, humiliation and a lack of valuing of others is: How can empathy be created and strengthened and the transformative processes of personal and social change be facilitated? But in order to respect the fact that empathy and action require introspection, reflection and self recognition, perhaps the primary question should be: How can we draw on empathy in our own moral response to difference? 

This is not an idle question. As I drew on examples from the Middle East and East and Southern Africa, was your reaction one of the valuing and recognition of the experiences of others? Or was it a distancing of self from them, a creation of difference: that has happened there and not in my community or country and so is not relevant to me? As you undertook your research and prepared your statistics and analyses for presentation here, what was the relation you created between yourself and those whose lives you are documenting and discussing. 

As we discuss our different perspectives on what is required to respond to this epidemic, do we do it with mutual respect and a sense of a common cause? As we come become sensitive to the creation of Them and Us, how do we recreate our roles and responsibilities in the response to the epidemic? Do we remain the experts or do we become the partners of others, the facilitators of processes of change and of the creation of ways forward? How do we draw on empathy to help ourselves live the lives that we wish to lead?

ENDNOTES

1. The Story is taken from Dervla Murphy, The Ukimwi Road: From Kenya to Zimbabwe, London: Flamingo/Harper Collins, 1994, pp. 123, 127-128. 

Acknowledgements

This paper was first presented at the 9th International Conference of HIV/AIDS Education in Jerusalem, 1995.

Biographical note

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.