StudyPaper No. 4

Other ways of doing things: The Lessons of Cairo
 by Elizabeth Reid

Drawing the lessons: population and development

For the analysts and the activists concerned about the HIV epidemic in general, and about issues surrounding women and HIV in particular, there is much to learn from the population and development movement, both at the global and the local levels. In particular, a backwards glance at the history of discussion and action on population and development shows the critical importance of the initial act of naming a problem, of the adequacy of the analytical framework developed, and of the strategies drawn from it to implement it.

For the last two centuries, but with increasing vigour in the post-war years, rampant population growth has been named as a problem and a vision created of impending doom. Fears have been expressed about population growth exceeding food supplies, creating poverty and destitution or threatening human well-being defined more broadly¹. The dominant defining images have been of suffocating spaces and of globes with people piled up, overflowing and tumbling off. The images and word pictures contributed significantly to the changes in perception that led to a broad acceptance of population as a global concern.

These catastrophic images encouraged a simplistic analytical framework and emergency solutions. The proposals developed in the 50's and 60's to respond to this so named problem were based on the concept of population control. The operational strategies focussed narrowly on the provision of family planning services providing contraceptives, sterilization and abortion services, primarily to women. There was little or no mention of, for example, women's health in general or even of human well-being as a positive end in itself rather than as something threatened by the population explosion.

Even after this issue was placed on the international agenda at the first world conference on population in Bucharest in 1974² and despite the insistence at this conference by the developing countries that population growth rates were inextricably linked to investment in education and health services and to social and economic development, both the analytical framework of the conference documents and its operational practice remained narrowly focussed on population control.

This history has had a number of consequences of relevance to the response to the HIV epidemic. Firstly, the analysis of the social changes to be initiated was undertaken at the macro level rather than at the household or couple level. Consequently the indicators of success were based on demographic objectives and targets such as national fertility rates or overall population growth rates. The micro reality in which fertility decisions are taken, the dynamics of decision making between couples or the choreography of sexuality, be that sexuality measured, lustful, brutal or whatever, were not considered relevant.

The distancing that a macrolevel analysis creates from the untidy and uncontrollable realities of sexuality, childbearing and childrearing led to the hegemony of concepts such as "pregnancy outcome", "reproduction" and "fertility regulation", hard-edged and de-personalizing terms. Would women have chosen them to describe their experiences of these realities? For me, words such as these carry no resonances of the complexity and chaos of the social and cultural pressures, the desires, the physical stirrings, the performance fears, emotional needs, the risk taking, misgivings, delusions, naivete, etc. that characterize sexuality. Nor of the complex of emotions, physical changes, social reactions, social and sexual desires, the ambiguity, pain and conflict which come with pregnancy and nurturing. The language of the analysis distances itself from, even denies, the human realities.³

The centrality of the concept of "control" in the analytical framework pre-empted the ethical debates. The analytical framework implicitly asserted that controlling, even coercive, policies and programmes are justified by the ends to be achieved. It legitimized authoritarian interventions instead of advocating consensual approaches. It encouraged the viewing of people instrumentally, as means of achieving some externally established goal, growth in aggregate income per capita or environmental conservation, through population control. Human life, people's dreams were not valued in themselves.

Women became the instruments of public policy, the means to achieve the externally established goals, external, that is, to women's own desires and the realities of their lives. They were not participants in a process of consensus building for social change whose parameters and vision were determined by them and the others essentially involved: their sexual partners, husbands, mothers-in-law, communities, etc. Because it was felt that women were more amenable, their behaviour more easily modified, they became the focus of interventions.

This choice of women as the most effective instrument led to the neglect of men, of male sexuality and sexual behaviour, men's familial desires and their duties and responsibilities in the design and delivery of services. It also led to the neglect of the situations in which sexuality and childbearing play themselves out, the interplay between a man and a woman and amongst all the players and influences.

The distancing of the analysis from the complex, diverse and dynamic realities of human sexuality and its consequences and the failure to engage the sexual actors in the processes of strategic development⁴ led inevitably to a mechanistic approach. A set menu of contraceptives, almost exclusively for use by women, and the services required to make them available, both coercive and consensual, were introduced. Later women's education and breastfeeding were advocated, but not as desirable in themselves, rather as instruments or means of fertility decline and population control.

The vagaries of sexuality, the fears in the hearts of men, the complexity and ambiguity of a desire to become pregnant, the disempowerment of gender, the socio-economic settings of these actions, even human well-being, were not the focus of services or programmes. Neither were infertility or maternal mortality and disability, much less the pain and suffering these caused. Even sexually transmitted infections were standardly consigned to a different and equally vertical programme, servicing mainly men.

The starting point for strategic development was not the daily and nightly realities of people's lives. The "target" population was other than the strategists and the advocates. The targets, concepts, values and strategies served the purposes of the Outsiders. They did not enable and empower those concerned to express their dreams, fears and aspirations and identify their needs and their own resources.

The linkages were lost between sexuality and childbearing and the complex political, social, cultural and economic forces that influence and mediate daily decision making: access to economic resources, livelihood strategies, social and cultural norms and values, access to education, health and social services, etc. The linkage, unnameable in this analysis, between sexuality, empowerment and development went unnamed.

This is not to argue that family planning services and access to contraceptive technologies were not needed. They are clearly needed by those who have chosen to take reproductive responsibility. However it is not clear that it is their availability that changes patterns of decision-making about sexuality, conception and children. There was a failure to differentiate between factors which influence decision making and the contraceptive technology and other goods and services required to enable decisions taken to be carried out.

As a direct result of the analytical framework, the causes of failure to achieve the set targets were identified as a failure in the coverage or delivery of the propagated services rather than, for example, cultural factors such as the widespread valuing of the continuation of the lineage over women's lives⁵, women's subordination to or emotional dependency on men, people's desire to live different lives from those advocated and so on.

The price of failure was seen by the Outsider as the addition of another unit of population. It was not seen as a serious impairment of the quality of women's lives or the tragedy of their unnecessary deaths or disability. Few or no studies were undertaken on how families and communities unravel, socially and economically, with women's drudgery, death or disability.

All this has now changed. Women lived the consequences of the old analysis, its mechanistic strategies and irrelevant discourse and rose up to change it, nationally and globally. Individual men began taking changing economic circumstances, rising costs of living, legal sanctions⁶ and, to some extent, women's health and well-being into account in the expression of their sexuality. They began to manage their sperm.⁷

The ineffectiveness of the narrow strategic focus became clearer to national and international bureaucrats as the relationship between women's well-being and their ability to participate in and influence fertility decisions was acknowledged. Time and time again, throughout the world, political will and leadership, the empowerment of women and the recognition of their rights, economic hardship, investment in health and education and public discussion of values and dreams influenced people's fertility decisions and led to a significant and rapid reduction in birth rates.⁸

Over the last three years, the former analytical framework has been replaced by one founded on the concepts of women's health, rights and empowerment and men's roles and responsibility in conception, childbearing and childrearing. The analytical framework of the documents of the 1994 International Conference on Population and Development are given structure by these new concepts. They place human sexuality, desires and pleasure, women's health and empowerment, and men's engagement into the context of development in a more integrated and structural way, recognizing the complexity of their interlinkages within political and cultural settings. They emphasize the role of the civil society in problem solving and the interrelationships between population, sustained economic growth and human development, between poverty, migration, urbanization, education, social services and family decision-making.

This radical deepening and broadening of the analytical framework and, to a certain extent, its strategies and practice was significantly influenced by one of the most extensive and effective movements of women in living history.⁹ Led by women of the South and supported by women of the North, the international women's health movement brought to this task an understanding grounded in the realities of their different daily lives, their activist experiences, their reflective analysis, their networking, communication, advocacy and lobbying skills, their political and tactical astuteness, their moral sensibilities and an essentially inclusive, communal and altruistic approach, an ethics of caring and compassion rather than individualism.

They influenced national preparations, revised texts of conference papers, lobbied at the preparatory meetings, became members of national delegations and flocked to Cairo where, determined to hold all those finalizing the documents accountable for their content, they queued for hours to get their passes to enter the main conference. No longer could they be corralled in a parallel Forum and emasculated. In my experience, no other social constituency or coalition has so influenced the discourse, the analysis or the strategies of a global initiative.

 Applying the lessons: the HIV epidemic

So what can be learnt by those responding to the HIV epidemic from this other historical process? For the toll in human lives from this epidemic will mount exponentially the longer it takes us to capture its essential complexity in our analytical framework and our strategies.

An analysis of the conceptual framework of and the response to the HIV epidemic shows both similarities to and differences from that of the population movement. For our purposes, the discussion of the spread of the HIV virus will refer to heterosexual transmission since, for the overwhelming majority of women, ninety per cent and more, this is how they become infected.

The problem the world faces from the HIV epidemic is considered by many to be an increasingly grave challenge to human survival and well-being. It too has been named as a crisis, both immediate and endemic, its global spreading likened to the horror of encroaching bush fires whipped on by whirling winds. Its acolytes have exhorted and implored. However, neither the discourse nor the images have yet captured the global imagination. It is hard to render visible the invisible, to broadcast the soundless sweep of its coat-tails. And its ultimate manifestations in the gaunt, the diseased and the demented distance one rather than draw one in. Its images of skulls superimposed on hearts, of tombstones and grim reapers have not captured the popular imagination. They have not rallied people to its cause.

Yet there should be cause for concern. There are 2.5 billion sexually active people in the world, who engage in, say, 100 million acts of sexual intercourse daily. For only a few of these people is this intercourse actively protected. Three hundred and fifty thousand people each day become infected with a sexually transmitted pathogen (STI), including HIV.¹⁰ The rate of STI infection is increasing, not decreasing, despite STI services.¹¹ The rate of HIV infection is increasing exponentially: the global rate of new HIV infections seems to be doubling every twelve to eighteen months, according to WHO's acknowledgedly conservative estimates. So too is the rate of spread of the associated epidemic of tuberculosis, a contagious pathogen, unlike HIV.

The analytical framework established as the basis of action for this epidemic also lacks complexity, similarly encouraging a focussed mechanistic and interventionist approach. The blueprint/menu developed - surveillance, KAP (knowledge, attitude and practice) studies, IEC (information, education and communication), STD services, blood safety, and treatment - was introduced everywhere, whatever the situation.

The approach is at one and the same time both too narrow and too broad: information on transmission and protection is provided only to classically defined "risk groups" or else it is broadcast to the whole country, all hospitals are advised to follow infection control procedures, everyone is asked not to discriminate against an infected person, etc. It is also interventionist. People are told what to do: wear gloves, test blood, use condoms. The inevitable reluctance of people, including health professionals, to change the way they do things, the need to jolly them or push them towards change is ignored or used as an explanation of failure rather than as an instigator of a different approach. It is no accident that national programmes have been named AIDS "Control" Programmes.

The analysis has also been lacking in a gender sensitivity, lacking a grounding in the realities of human sexuality, pleasure, risk taking and sexual decision making and lacking the inclusion of the psycho-social and economic settings within which people struggle to remain uninfected or to accept that they could be infected through their own behaviour, or that of others.

And so its operational strategies have their direct analogues to those earlier adopted to address fears about population growth. Rather than instigating the complex processes of cultural, social and economic change required, the strategies limit themselves to a menu of interventions, for example, the marketing of condoms, the provision of STD services, limiting the number of sexual partners. The basic social unit to which the strategies are addressed is, once again, the individual, rather than the couple (whoever they are) or the community. Initially the paradigm of this individual was a homosexual man, a man injecting drugs or a woman sex worker. More recently, all women are beginning to be included. But not all men. 

Women and the HIV epidemic

The inclusion of women in the list of those vulnerable to infection distorts both the naming of the problem and contributes little if anything to the search for effective and sustainable solutions.

Again, the rhetoric names the locus of interventions at the level of the individual, placing the spotlight on women and leaving men unnamed, carrying no responsibility. Again, it bypasses the location of sexual activity: the couple. But in heterosexual intercourse, both men and women are in some way or other involved and so both must be named and strategies devised which take into account the sites and circumstances, and the meanings, of their sexual activities.

The rhetoric of women as a vulnerable group mis-locates the cause of the vulnerability in the frailty of individual women. It brings with it implications and overtones of passivity. But women are no more socially vulnerable to HIV infection than men and in situations where they can exercise some control over what happens probably significantly less so than men. Men caught up unreflectively in the exercise of power and authority may fail to see themselves as vulnerable. The cause of women's vulnerability must be located in the systemic problem of women' s subordination or lack of empowerment or in the construction of masculinity and the lack of male responsibility for the management of their sexuality.

Most importantly, however, this naming of the vulnerability of women pre-empts the possibility of posing the critical questions:  

• How do communities, within which women live, develop the concepts and practices of protecting sex?
• What values must communities have if they, and so the women and men who are their members, are to overcome this epidemic?  

This epidemic is the great leveller of women. Fear of becoming infected and an inability to ensure that they remain uninfected is common to virtually all heterosexually active women, irrespective of their education, their social class, their lifestyles, their mental or physical health, their age, their marital status, their legal rights or any other socio-economic variable. They share a doubt that their words will influence the behaviour of their men or the dynamics of their relationships.

Thus the structuring concepts of the analysis must be found outside of, be independent of, women's access or lack of access to these benefits, services or goods. They lie somewhere as yet unidentified. And so the analysis must start with the reality of women' s lives and how that relates to how they act and what happens to them in sexual situations. Its prescripts for action will have to address child brides, pregnancies in pre-puberty girls or reproductively immature young women, assaultive sexuality, cultural and sexual practices that cause lesions or inflammation and many other daily conditions of women's lives.

However, the concepts to structure the analysis must be identified. They may well include whether societies place value on women, often rates of maternal mortality, abortion related mortality, or female infanticide are indicators of a lack of valuing, and women's empowerment, that is, the recognition, acceptance and use of their capabilities. Clearly, male participation and responsibility must be a component concept, as with the related issue of fertility.

Freeing the analytical imagination 

The narrowness of the classical analysis and its strategic approaches has led to a limiting of the analytical imagination and a devaluing of introspection and insights. Condoms have become the dominant point of reference. The subtlety in strategic development becomes centred around methods of advocating condoms, ways of negotiating, distributing versus marketing, indicators of use, etc., rather than on the development of strategies for creating dialogue, for consciousness raising, especially for men, strategies addressing sexual decision making and its settings, strategies of empowerment.

Little or no value or encouragement is given to the personal strategies that women in fact do use, to reflections on personal experiences and the experiences of friends and others in coping with the need to protect oneself and others from infection. Those caught up in this pursuit rarely use condoms themselves, neither the bureaucrats nor the activists. This observation might be considered criticism yet the point is that it does not necessarily imply that people are not protecting themselves. It may indicate that the protecting options are more diffuse and difficult to grasp or name.

The hegemony of the condom-centred analysis needs to be rethought. Experience in gay communities where rates of new infections have dropped sharply indicate that where people are protecting themselves from infection, the majority adopt strategies other than condom use. In a series of excellent studies carried out under the auspices of the International Centre for Research on Women, women around the world voted with their voices:

 "Nearly three-quarters of the women interviewed in the South African study saw condom use as unappealing because it connotes a lack of trust or intimacy (Abdool Karim 1993). Similar findings were reported by the researchers in Brazil, Jamaica, and Guatemala. For the women interviewed in these studies, condoms are for having sex with 'the other,' not with the stable partner. For women of Brazil and Guatemala the condom is for women 'of the street, not the home,' in Jamaica for 'outside, not inside relationships,' and in South Africa for 'back pocket partners' (Goldstein 1993; Lundgren et al. 1992; Chambers 1992; Abdool Karim et al. 1993).''^l2

Rather than using these insights as the starting point of an exploration of why women were not using and did not want to use condoms in their primary relationships and what other strategies they may be using or trying to use to protect themselves, these findings were used as the basis of a recommendation to "support face-to-face education and mass media education campaigns that destigmatize the condom and weaken its association with illicit sex".¹³ Both these recommendations are important, yet implicit in the analysis seems to be an assumption that the ideal state would be that all people, whatever their circumstances, would use condoms as their protective strategy.

The analytical and creative imaginations have been externalized and stifled. Rather than the classical approach advocating a menu of safe practices - abstinence, condoms or mutual fidelity, for example - why not build on the insights of these women and others and develop, as these women do, a situational analysis which distinguishes between sexual behaviour within an intimate and on-going relationship and other sexual behaviour, which latter may be called sexual encounters. Most people find themselves in one or the other situation at different times in their life cycles, some people find themselves in both at the same time.

Protected sex

HIV strategies to date have focused on protection in sexual encounters, much less so on protection in on-going relationships. In sexual encounters, protective strategies have to be assured or negotiated for each encounter. Condom use is an attractive strategy: it provides effective protection, it minimizes the need for discussion and negotiation, it is under men's control. Yet, even in the case of sexual encounters, the diversity of practices people actually use far exceeds the brevity of the standard menu: condom use.

If the strategies for protection in sexual encounters had been based on the reality of male and female sexuality and people had been asked how and why and where their sexuality is expressed, the discourse, the images and the strategies may have been quite different.

To give one slight example, when this lived reality has been explored, it has been found that men who pull on condoms with their thumbs inside and fingers outside, the way women pull on stockings, rather than following the current instructions about squeezing the teat with the fingers of one hand and unrolling it with the other, not only experience fewer breakages and slippages but find this method easier to use if the penis is not fully rigid^l3.

More challengingly to the hegemony of a condom-based approach, this same study of volunteer condom users drawn from STD clinics and University health services named one of the lived experiences that have been left out of the analysis. They found that about two thirds of the men sometimes or often lost their erection while putting on a condom and nearly as many (60 per cent) lost their erection during intercourse, at least occasionally.¹⁴ Such realities, in the context of the current social construction of masculinity and male sexuality, may assist in explaining a reluctance to use condoms, especially as an exclusive strategy, and the continuing exploration of alternative protective strategies.

The basic practical and ethical question to be explored is whether some protection is better than an approach limited to strategies considered to provide adequate protection. For people do use a varied range of protective strategies in their sexual encounters:

• avoiding alcohol and other drugs,
• avoiding certain places,
• using a diaphragm,
• avoiding certain people,
• coitus interruptus,
• calling a meeting,
• not succumbing to a surge of lust,
• spending long hours at work,
• using a spermicide,
• oral sex,
• finding other things to do,
• estimating the other person's, or one's own, infectivity,
• talking about protection,
• trying to talk about it before rather than after,
• and many more.

Amongst drug users, those who are known to be infected share last or share separately. Some of these offer some but imperfect protection to the act, some are part of a longer term strategy to nudge themselves and their partners or their communities into protective behaviour.

It is critically important that these strategies be valued, that they be named, shared, assessed and developed. My grandmother's advice to put both legs into the same stocking when dressing for a date may not have had much practical end but it made its point and allowed the discourse.

Protecting sex

Within the intimacy of an on-going relationship, acts of intercourse are not encounters. There is the possibility of establishing other protective strategies, of reaching agreement on an approach within which each person behaves in such a way that neither could infect the other.

An example of such a strategy is emerging in the discourse of affected communities. The process includes:

• discussion with one's partner, often the most difficult element,
• knowledge of each person's infection status, agreement not to use condoms within the relationship (assuming that neither is infected), and
• agreement that, should there be encounters or relationships outside their relationship, these will always be protected, that is, condoms will always be used.

An important further step is: 

• the agreement on what to do if, given the frailty of human nature and the vicissitudes of negotiating protected sex, one or the other should put themselves at risk of infection. 

This strategy has been called in the literature negotiated safety^l5; another name might be protecting sex, intercourse which is protecting of self and of others. Such a strategy presupposes an extensive period of community and national discussion and consensus building round the difficult ethical and practical issues of voluntary testing and counselling services. This strategy will fail in any situations where testing is mandatory; it may succeed where it is empowering.

Protecting sex or some similar approach is the strategy that most couples, young and old, heterosexual or homosexual, will probably adopt. Many gay relationships are already moving this way rather than to the consistent use of condoms. Many young people in Africa are seeking to enter into such relationships. They wish to be able to find out their infection status and to make their decisions about protection in light of this knowledge.

Most married couples outside of Africa assume, not on firm statistical grounds, that their relationships are protecting. Or they are unable to discuss their fears with the other. Married women in Africa, because there has been no discussion at national or international levels of strategies applicable to their lives, have been unsupported in their attempts to find a way to protect themselves and those they love.

Help is needed so that couples can nudge their relationships towards protecting sex. There are many practices which protect to a greater or lesser extent. The adequacy of these practices needs to be determined in the circumstances of each couple's sexual needs and preferences.¹⁶

The choices are not change or else, not a condom or an end to sex or the relationship. Within an on-going relationship, there is a negotiating space, a process of awareness creation, of strategic questioning, of reflection, of change, of further questioning and negotiating. As one Kenyan women reflected: "The approach with which we share the problem with [our husbands] and sensitize them to the seriousness of its effects on us and the family is more important than trying to seize control of their habits. They're human beings. They have a capacity to listen"¹⁷

Protecting sex safeguards better the meaning of intercourse and ecstacy in an intimate relationship. It presupposes trust and honesty but enables the expression of love without an omnipresent rubbery reminder that this trust may not be justified. However it cannot be advocated or adopted without the ready availability of affordable voluntary counselling and testing services.

Thus, it has been argued, rather than developing strategies to tell people what they should do, it is important to understand how people are in fact adapting, coping and expressing their sexuality in the contexts of their lives and support and strengthen those strategies which for them offer greater or greatest protection. 

Sexuality, rights and risk 

The adoption of this strategy will force a re-examination of the approaches to risk implicit in the response to the epidemic to date.

Sexuality, like pregnancy and childbirth, has always entailed risk: the risk of bodily harm to women, risks to the social order and to the accepted role of men, but especially women, within it, the risk of disease. However, in the pantheon of responses to HIV, selected strategies have been given the imprimatur of "safe sex practices", and others rejected on the basis of insufficient safety.

Insufficient attention has been paid to the way people understand and live risks, not only the way that they process, understand and act on such information in the wider context of their lives but to the interaction of their value systems and their sexuality and to the strategies they develop to minimize harm or risk.

The response to the epidemic has bordered on coercion by denying people access to knowledge about protection strategies considered to have less than acceptable risks: the use of a diaphragm, coitus interruptus, oral sex, whatever. Such an approach views people as incapable of making realistic choices about protection. The acceptability of the risk is determined by others, by Outsiders. It tends to induce authoritarian or condescending attitudes in programme delivery staff and fosters allegations of back-sliding and recidivism, recidivism, of course, from their standards.

The level of risk or safety for different practices needs to be determined as best as possible. This is not at issue. What is at issue is who decides what is an acceptable risk. What is possible in the contexts within which people express their sexuality will vary but everyone has the right to the inforrnation and the means to make informed choices within that reality. It is a question of rights, not of risks.

It is the role of HIV programmes to create the conditions which acknowledge people's right and strengthen their capacity to make their own informed decisions about their sexual and reproductive life.

Filling the moral space 

In contrast to the origins of the population debate, more space has been created within the response to the HIV epidemic for moral discourse. However, to date, this space has been occupied by issues relating to the rights of those infected. It has been acknowledged that the body of human rights law should be respected with respect to those affected, that a protective law and practice is more effective that a punitive approach, that public health objectives require the retaining of the trust of those infected and that only when those affected are not discriminated against, humiliated or rejected will their stories be heard and so catalyze and motivate others to change. The moral space has not encompassed the broader range of relevant issues including women's rights, men's responsibilities and the values which will need to be acknowledged and acted on if commlmities are to be able to survive.

Other ethical issues also need to be considered. Do people have a right to be able to know their infection status? Is this right being respected in developing countries? Do couples have a right to marry and have children when one of them is known to be infected? What are an individual's rights and responsibilities with respect to his or her sexual partner and society? Can a person be held accountable if through his behaviour he unknowingly infects another? Is the infection of women by their husbands murder or manslaughter? What is the relationship between individual culpability and societal culpability?

What is the state's role and responsibility with respect to individuals, couples and communities? Must a balance be struck between human well-being and freedom and the interests of the social good? Who defines these interests? How will those who advocate ineffective strategies or refuse to allocate the required resources be held accountable? How can trust be built where imbalances of power exist? Which ethical discourse can best elucidate these issues: one based on the individual and on concepts of rights and justice or an ethics of care and compassion? Are both needed?

The moral analysis and its language also need to reflect the complexity of these situations. Accusations of culpability have bedevilled the HIV discourse. It has been replete with images of women stalking the streets looking for victims to infect, in one unfortunate instance with blood dripping from their fangs, of women infecting their infants, actively propagated in phrases such as "mother-child transmission", of drug users brandishing contaminated syringes, of rampages of vengeance.

Now, as the extent to which women are becoming infected is receiving some attention, men are beginning to be held culpable. But a complex analysis must be brought to bear on identifying causes. This is another example where the problem is in danger of being misnamed: men are to blame. Without absolving individual men from responsibility for their acts, the context in which men act the way they do must also be taken into account.

The influence of tradition, of social expectations of male behaviour, of the economic and environmental conditions that force migration and mobility, and of the societal construction of masculinity and of male sexuality and its expression all affect male sexual behaviour'8 and influence whether men will nurse and care for their sick wives and children or plan for the future of their families in the case of their own infection and illness. All are relevant to a moral, as well as an operational, analysis.

A people-centred rather than an epidemic-centred approach 

In countries or communities, neighbourhoods or villages where few people are yet known to be infected, a quite different approach to the classical approach becomes possible. This approach mirrors what people in fact do in such circumstances, circumstances where they do not have an active, affected community to support them. It also builds on our knowledge that knowing someone infected is one of the most significant catalysts for attitudinal and behavioural change.

A people-centred approach focuses attention, support and services around those known to be infected. It responds to the needs established by their daily lives and immediate relationships. The services mobilized would be based on the requirements of each person and the aim of these services would be to establish for that person a supportive, non-discriminatory environment which would:  

• enable them to make the transition from the trauma of knowing that they were infected to living with that knowledge,
• to continue as economically and socially active individuals as long as possible, to plan for the future of those dependent on them,
• to have access to well-being information, health care and other social services, and to remain an integral part of their communities.

Let us take the exarnple of an infant clinically diagnosed as infected. Both parents preferably, rather than just the mother, would be told by a counsellor who would help them through the trauma of recriminations, of blame, of fear, of pain, the point at which most families are likely to tear themselves apart. The counsellor and other members of a support team would discuss with the parents whether they themselves would like to be tested, would teach them about infection control in home settings and help them learn to care for the child and to be able to recognize symptoms that need hospital or health centre attention.

This support would be on-going as required by the farnily until the farnily might wish that others know. These may be medical staff should the child become sick or playgroup or school friends, staff and parents or neighbours. Over time, as the child's life was lived, the family would be assisted to talk to those individuals or institutions that were a part of it - the nearby hospital, the local shop, the school, the neighbourhood, the church, the local government, etc. who in their turn would be assisted to change: to reflect on their attitudes, their fears, their own requirements for protection.

Such an approach would create an environment of support and care and the child and his or her family and their support team would be actively involved not only in helping others to live at ease with the child but in helping others to realize the importance of protecting themselves from infection. Furthermore, rather than addressing, for example, duty of care messages to all hospitals with, probably, limited success, the hospital actually caring for the child would be targetted and assisted to change. In this way, the hospital and its staff would become the exemplars for change elsewhere.

If the known infected person was a woman, it is probable that her first concern would be for the future of her children. Time would need to be given by the support team to finding, in the particular cultural and personal setting, a way of planning for the children's immediate and future needs. The deprivations and disempowering features of the woman's daily life would soon surface as central issues, difficult to address in individual circumstances, maybe, but essential to address at the community level and at national level. The generation of community discussions, the creation of awareness and the advocacy of change would then become a part of the team's work

As attitudinal, behavioural and institutional change began radiating out from those participating, others would be encouraged to find out their infection status so that they too could take their lives in hand. The focusing of these services at the local level would need to be supported at the national level by a protective rather than punitive legal environment, by the widespread availability of counselling and testing services, by the local availability of the required services, by the bureaucratic flexibility to create multidisciplinary and interdepartmental support teams at the local level, by the development of a supportive legal environment and of ethical principles, especially relating to confidentiality and consent, essential to the success of this approach and by a discussion and clarification of roles and by the establishment of structures for collaboration and communication amongst all involved.

Over time, as more people in a neighbourhood became known to be infected, the level of focus of services could move from the individual and those close to him or her to the neighbourhood or community. The community could be supported to discuss and develop the services and organizations required to support its members. Through such an approach, all the national objectives - slowing spread of the virus, care for those affected and minimizing the impact - could be addressed in an holistic and integrated manner and in a cumulative fashion better suited to the development of the sorts of services and attitudes essential to an efficacious response.

Creating and sustaining social change 

Even where the epidemic is already established, there are alternatives to the classical approach.²⁰ Here, learning the lessons of the population initiatives becomes urgent. Contraceptive technology and family planning services need to be there for those who want them. The critical thing to understand is how people come to want them, how contraceptive, fertility and sexuality decisions are taken and the psychological, social and economic processes through which this behaviour is mediated and how changes in this behaviour can be initiated, supported and sustained.

In case of population, changes in patterns of decision making have come about with improvements in women's well-being: respect for them as rational human beings, value given to their productive activities and other contributions to the well-being of their families and communities, the creation of opportunities for their employment and other changes which empower them. The changes have also required a recognition of men's desire to be involved and their love for and concern about their families. Other essential elements include redistributive policies and programmes, investments in social capacity building, the ability of groups of people to discuss and decide upon issues, and stable and responsible governance.  

Similarly with the response to the HIV epidemic, good quality, affordable condoms, microbicides which are not spermicides, diaphragms and other protective technologies, voluntary testing and counselling services, sterile needles, STI services and protection information all need to be made accessible. The radical social change that needs urgently to occur, however, if we are to be able to overcome this epidemic, is that people, including the activists, the advocates, the bureaucrats and the professionals, must want to use this technology, want to protect themselves, want to take responsibility for their sexuality and their lives and be able to talk about these things to those with whom they interact sexually.

The locus of change is the individual, the couple, the community, the people of a nation. People must be the active agents of change, reflecting on their lived realities, their values and on their visions of the sort of world for which they are striving. Thus there is a need to explore the nature of the relationship between individuals and outsiders, those concerned for their well-being who wish to see these processes of change rapidly initiated and sustained: the already touched, the service providers, the visionaries, the compassionate, the dissenting voices, the prophets. Is this relationship to be coercive and directive or is it to be participatory and empowering? Are people to be instruments, or participants in, the processes of change?

If the latter, then dialogue, a capacity to talk things over, become the most critical requirement: couples to talk about their sexuality and protection, communities to talk about their values and norms, churches to talk about care and compassion, work places to talk about protection and support, citizens to talk about the future of their nations. The basic skills required will be listening, introspection, strategic questioning, conflict resolution and consensus building, whatever the setting, the discipline or the occupation.

The changes to be achieved include protecting sexual or drug using behaviour, other protection services, attitudinal change, and care, support and treatment for those affected and their survivors. Some responses will be inimical to the achievement of these changes, some supportive. There needs to be a way of determining which values will assist communities and nations to survive the onslaught of the epidemic. New social contracts based on a recognition of interdependence between men and women, between those affected and those not yet affected, between this generation and the next, between communities and nations and amongst nations will be needed. These social contracts embody the vision, becoming the end points of the process of social change.

The resource base for these changes, the infrastructural and technological requirements, includes the classical menu of interventions as well as counselling services, support groups, consciousness raising groups and peer groups, for the affected as well as the not yet affected, protecting information, well-being information for the infected, treatment services, and such like.

The enabling environment, the milieu within which these social changes could create the will to live and expand into a mass movement for change, would include appropriate ethical, legal and human rights policies, conditions of good governance, an acceptance of the conceptual complexity of the situation, of the need for holistic and integrated responses and the creation of a world wherein opportunities for living a life worth living exist for us and for future generations.

This may seem overwhelming in its complexity but all social change starts from a dissenting voice, a new insight, a dream sketched, a question asked. People, their organizations and their institutions will find different ways forward and have different roles to play, for there are many entry points for action and much to change. The challenge of the epidemic over other needed areas of social change lies in its urgency: too many lives can be lost too quickly. Because of this, individual solutions will have to merge into collective action. Together we must find the will to live and so the determination to change.  

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.