Issues Paper No. 10

GENDER, KNOWLEDGE AND RESPONSIBILITY
Elizabeth Reid

Endnotes
Bibliography
Acknowledgements
Biographical Note

One of the most striking features of the response to the HIV epidemic to date is how few of the policies and programmes we have developed relate to women's life situations. The daily lives of women and the complex network of relationships and structures which shape them are well known to women and well documented. Despite this, our theories, research agendas, policies and programmes have not been grounded in and informed by these experiences.

 This failure to take into account existing knowledge or sources of knowledge, to seek to understand and explore relevant facts and strategies, I wish to call a failure of epistemic responsibility.

 Epistemic responsibility is marked by an openness to the acquisition of knowledge and a certain kind of orientation to the world and to one's knowledge-seeking self within it 1. Certain kinds of knowledge are contingent on experience which itself is mediated by the gender, ethnicity, class, academic discipline and geographic location of the experiencer. The value of what is known is dependent upon the alternatives or perspectives considered. If assumptions have not been questioned and alternative sources of knowledge sought, then the knowledge can be faulted. Claims to knowledge can not only be verified. The claimant can be faulted for not having looked enough, for the way he or she comes to knowledge.

 The concept of epistemic responsibility has already been used in the context of the HIV epidemic. It has been accepted that those in charge of blood and blood-product services in a number of countries can be held accountable for not exercising their responsibility to know, to take existing knowledge and techniques into account which could have significantly lessened the contamination of the blood supply before HIV test kits were available. Individuals, not only the systems within which they operate, can and should be held responsible for their lack of interest, commitment or sense of urgency.

 Responsible knowledge of human experience in general and women's experiences in particular is essential to effective HIV-related research, policy and programme development. Since the cost of ineffectiveness in these areas is an increasing toll of human despair, destitution, illness and death, epistemic responsibility is also a moral imperative.

 This article will focus on the urgent need to ensure that women's knowledge and their varying life situations are systematically taken into consideration in the formulation of responses to the epidemic. Clearly, HIV-related research, policies and programmes must be grounded in human experiences, that is, those of men and boys as well as of women and girls. However, to a great extent, the life situations of men and boys have been more accessible to those responsible for developing HIV programmes. The reason for this differential access needs exploring and provides a justification for the specific focus on women's experiences.

 The strategies developed in response to this epidemic have been marked by the absence of a grounding in women's various life situations. The cost has been high. Over 4 million women are infected, ill or dead. The majority of these women are in the age group 10 to 30, with the highest prevalence in the age group 15 to 25. In men, high prevalence occurs ten years later in the age group 25 to 35. In developing country regions, Africa, Asia, Latin America and the Caribbean, the proportion of women to men is almost equal or rapidly becoming so (Chin 1991). Elsewhere, the proportion is also approaching one to one, although more slowly.

 Most women are at risk of infection by sexual transmission. Yet the prevention strategies advocated to prevent sexual transmission have offered women little or no protection from infection.² Prevention strategies in general and education (IEC) messages in particular have focused on the reduction of the numbers of sexual partners, fidelity within relationships, safer sexual practices, in particular the use of condoms, and more recently, the treatment of sexually transmitted diseases (STDs). However, these measures are grounded in men's physique, lifestyles and experiences, rather than women's, and should be directed at men. As means by which women can protect themselves from HIV infection, they are inadequate.

 Advocating the reduction of sexual partners as a prevention strategy is irrelevant to the lives of the many women who have no sexual partner other than their husband or regular partner. Where women do have multiple sexual partners, this is often a choice forced on them by economic necessity. For as long as this situation and the socio-economic system that gives women few choices for economic independence remain, women will not be able to adopt this strategy.

 Neither is the second strategy, faithfulness within relationships, enforceable by women. It is estimated that between 50 and 80 per cent of all infected women in Africa have had no sexual partners other than their husbands. Having no sexual partners other than their husbands may be under women's control but their husbands' behaviour is not.

 Condom usage could be an important prevention strategy for women who cannot negotiate the nature of their relationships. However, condoms are used by men not women, who can only ask for their use, and so the same structural determinant of women's lives as sketched above means that they may have no power to control the use of condoms or to negotiate abstinence.

 Advocating the treatment of STDs as a prevention strategy can be faulted in a similar way: it does not adequately reflect the reality of women's lives and is, therefore, based on incomplete knowledge. Rarely are these services provided in culturally acceptable circumstances or by women. They need to be paid for by cash and are usually not easily accessible.

 The probability of infection by the virus during unprotected intercourse with an infected partner may be significantly increased when there are lesions, secretions, inflammation or scarification of the genital area. In men's lives, such conditions are usually caused by the presence of sexually transmitted infections and, again, this has determined the research and intervention agendas. But even in men, it is possible that factors such as a lack of circumcision may cause conditions which increase the likelihood of infection or increase infectiousness. This needs to be better understood.

 In women, the situation is more complex. Lesions, secretions, inflammations or scarifications may be caused not only by sexually transferred pathogens but as much or more by sexual practices, by cultural practices, in particular female infibulation and severe forms of circumcision, by non-infectious inflammatory genital conditions or other common conditions, fistulas, for example, arising from women's reproductive role.

 Few data exist indicating the incidence of these latter conditions but they are pervasive. An estimated 84 million women and girls have been infibulated or circumcised worldwide causing conditions of the genital area which could place them at high risk of infection when intercourse takes place with an infected man. More than one million women will suffer disabling illnesses and conditions from reproductive causes this year alone (Jacobsen 1991). These chronic disabilities are higher among poor women everywhere and 99 per cent occur in developing countries. The most common reproductive-related disabilities, particularly in young women, occur during illicit abortions or during childbirth and could certainly increase the efficacy of HIV transmission.

 Many of these conditions, including most sexually transmitted infections in women, are treatable conditions.³ Some will require changes in cultural practices, including child brides, pregnancies in pre-puberty girls or reproductively immature young women, assaultive sexuality, including rape and incest, and other sexual practices causing lesions or inflammation as well as in infibulation and circumcision practices.

 The social, sexual and economic subordination of women places them at risk of HIV infection in different ways from men. Strategies must differ when addressed to those put at risk of infection through behaviour or circumstances over which they themselves do or could exercise control and those at risk of infection through behaviour or circumstances over which they cannot exercise control. Prevention strategies have particularly not worked for those young women who become infected immediately they commenced sexual activities. For these young women, too often the circumstances in which they became sexually active allowed them little opportunity for choice or control. The behaviours that are unsafe are determined and controlled by others.

 Whilst the social construction of masculinity, reinforced by peer norms and community acceptance, may include a disdain for condoms, along with multiple sexual partners, including during marriage, these are behaviour within men's ability to change. Similarly, there may be behaviours which place women at risk of infection which are within women's ability to change.

 For prevention or behaviour change strategies to be able to protect women, they must fit their lives in two directions. They must be based on the contexts in which women's sexuality is expressed and, at the level of the individual, they must be strategies that women can exercise, that are under their control.

 There are few possible strategies which fulfil these conditions. The diaphragm plus spermicide may protect both women and men from HIV infection and, when necessary, can be used clandestinely by women. There is clear evidence that it protects men and women from sexually transmitted infections other than HIV (Stein 1990, Alexander 1990, Lancet 1990). However, little or no research has been done in this area. Indeed, little is known about how the virus enters women's genital tract, whether infection occurs at the level of the vagina, the cervix or the uterus or about how infected women infect men. If the virus ascends through the cervix then a diaphragm could give considerable protection but if the virus crosses the vaginal wall, it will be less effective.

 The female condom effectively protects both women and men, although it cannot be used without the man's knowledge since it is visible or palpable to the man when in use. However, it has not been aggressively advocated nor means explored to make it more affordable and reusable.

 All genital conditions which may facilitate HIV transmission should become a focus of attention. Those conditions which are treatable should be treated. However, the reality of women's lives forces another question: where? Many women have genital conditions which could be treated but an insignificant number of these women attend STD services. In fact, very few women are ever internally examined throughout their life, despite repeated pregnancies (McNamara, 1990).

 The protective strategy most widely adopted by women is that of talking to men and attempting to help them see the importance of protecting themselves from infection and the consequences of not so doing for their families (Mongola, 1991). This is a strategy that may best be undertaken by women collectively. Women individually may feel and be powerless but women together can both change community norms for male behaviour and change that behaviour itself (Reid, 1991).

If these strategies are not available or effective, the only other strategy that may be possible is leaving her partner. This is happening with increasing frequency in seriously affected areas. However, it is only an effective protective strategy if the woman is then able to support herself and her children, where she is able to take them with her, by means other than prostitution.

 If there are no strategies which adequately fulfil the two conditions identified above, then this must be clearly acknowledged and the focus of behaviour change strategies be found elsewhere: in men's sexuality and life situations or in communities. Changing men's behaviour and changing community standards to support the required behaviour changes are the most effective way of protecting women and their children from infection.

 In summary, then, we have seen that those prevention strategies advocated to date have not emerged from or responded to women's experiences; they were not even based on a responsible knowledge of human experience, of men's as well as women's. Yet all of the facts about women's and men's lives upon which this analysis is based are well documented. The failure to seek them out and use them can be measured in terms of lives lost through this irresponsibility.

 Both experience and knowledge are shaped by the gender of the experiencer. It is, therefore, necessary to find appropriate ways of knowing women's experiences and the structures that shape them and to develop research priorities, policies and programmes which retain contiguity with these experiences.

 What men and women know differs because their experiences are different ⁴. A paradigm of this would be experiences relating to biological differences between men and women. Only women can experience pregnancy, childbirth, conditions resulting from childbirth or because of her reproductive capacity. Men cannot be the knowing subject of these experiences. They can be accessible to men only through the stories women tell.

 Other areas where difference in gender may preclude the possibilities of common knowledge would include sexuality, parenting, strictly gender specific tasks and, in certain circumstances, some psychological and emotional states. This is not to argue that such knowledge is necessarily or intrinsically gendered but that, where experiences are not available to one gender, the knowledge arising from these experiences is not directly available either. In many of these latter cases, the difference is a matter of cultural, social or historical contingency. Men could be knowledgeable about growing manioc, tending the sick, nurturing children, expressing grief through crying, etc. Where they are not, this can be made a matter of choice not necessity.

 The need to draw upon women's knowledge and to remain in touch with the reality of women's lives will become more critical as the epidemic deepens and increasingly people begin to fall ill and children and the elderly are left without support. As the limits of the capacity of institutionally-based services to cope become clear, community- and family-based services are being advocated (Baldwin and Twigg, 1991). The terms "community-based" or "family-based" systematically obscure the reality that these services are provided by women: caring for the sick, feeding and caring for the elderly and the young, healing the traumatised, easing grief. All the work women do in holding together families, communities and their societies. Furthermore, to the extent that caring for the sick and the dependent means women's exclusion from the labour market, this will reinforce their economic and emotional dependence on men and so their inability to protect themselves from infection.

 Policies which build upon and reinforce the assumption or stereotypes of women as carers presume the availability of women to undertake these tasks, and to the extent required, as demand for the services increases with the epidemic. But at the same time that demand will increase for women's labour as nurturers, networkers, copers and carers, the economic and demographic changes induced by high adult mortality rates will increase the demand and the need for women's participation in productive labour. The complex network of responsibilities and relationships that women exercise in families and communities may be resistant to its collapse into the single function of caring.

 These considerations must be taken into account as strategies are sought to satisfy the increasing demand for care and support services and the expressed desire of the infected and the survivors to remain within their communities. We will need to recognize that care must be a collective responsibility of all involved: governments and communities, men and women, families and communities. Each has a role to play in the provision of support services to carers or in direct care provision. These strategies may vary from place to place as the details of women's lives, and men's, vary but the responsibility for them must be collectively held and exercised for us to survive the epidemic.

 It follows from this analysis that women experience and know things that men do not experience or know. The same is true for men. It also follows that it is impossible to understand the epidemic without drawing on women's knowledge and experience. We must free ourselves from the limited and limiting perspective of a particular gender, class or race.

 Unfortunately, such a limited and limiting perspective has dominated the HIV research and programme agendas, irrespective of discipline: epidemiology, clinical research and trials, intervention design, biological research, behavioural research, economics and so on (WHO/GPA/91.2, Stein 1990, for example) ⁵. Women have been missing from clinical trials; they have been tested without consent and denied access to the results; they have not been informed that their husbands are infected; their clinical conditions have not been included in case definitions or research priorities; stereotypes of prostitutes or wives have closed off possibilities of understanding. The primary focus of attention was elsewhere. The lack of awareness or acceptance that experience is gendered has left too many women without the possibility of knowledge of their infection status, without the capacity to plan for their children's future, with increased responsibilities and with a greatly increased chance of dying.

 Because most HIV research touches experiences that are gender specific -- sexuality, oppression, reproduction, labour, domestic responsibilities, etc. -- it must remain continually in touch with women's lives, experiences and knowledge as well as with men's. This will require that a critical intelligence be brought to bear on it. A serious constraint to this is that women are more aware than men that experience and knowledge are gendered ⁶, that social, political, moral research, policy, programme and other agendas relating to all facets of their life are drawn up on the basis of men's experiences. Daily reminders of this are rare for men, for many quite absent. As a result, the relevance of women's perspectives may not be realised by those developing responses to the epidemic and gender specificity not seen as critical to the value of the outcome. There is not a felt need to know.

 This lack of a felt need to know can lead to a failure to seek further in the face of dissonant facts, to set aside stereotypes and to search to know. Let us turn to a well and long known fact, already mentioned, which should be deeply disturbing. It has been noted above that the prevalence of HIV infection is highest in young women aged 15 to 25 but peaks in men ten years later in the 25 to 35 age group. This is a consistently different pattern between women and men. It was known as early as 1986 in the earliest data sets from the epidemic, the first 500 diagnosed AIDS cases in Kinshasa (Figure 1). The pattern is the same in recent data sets from Uganda where the epidemic has significantly deepened (Figure 2) and from Thailand (Figure 3) where the epidemic is still recent.⁷

 However, only rarely in the literature have the possible causes of this disturbing difference been explored. Decosas and Pedneault (1991) argue that this difference is due to the fact that sexual partnerships are usually formed between older men and younger women. This is doubtlessly a contributing factor but cannot be the complete explanation, if only because it is true for women in almost all age groups and so cannot explain the striking difference in infection rates in young women compared to older pre-menopausal women.

 Let us rephrase the question in order to highlight it: Why do young women (15-25) have such significantly higher rates of HIV infection than, for example, young men in the same age group? Both groups are sexually active; but young men more so than young women (United Nations, 1989). Both groups have sexually transmitted infections; but young men more than young women. Young women often have different sexually transmitted infections from young men. Both older men and young men form sexual partnerships with the women who are sexually active in this young age group. These facts are not adequate to explain why the rate of infection in young women is so steep at the onset of sexual activity and so high. The question can again be rephrased: why are more young women infected than older pre-menopausal women ⁸. In one South African study, 50 per cent of all infected women were aged 15-19 years, were young women with limited sexual experience, and had significantly higher rates of infection than young men of the same age and women in all other age groups (O'Farrell and Windsor, 1991). Similar patterns are found in a study of Rakai district in rural Uganda (Wawer et al, 1991; Cohen, 1992).

 In this case, the principle of epistemic responsibility would require urgent and high priority be given to the identification of possible determining causes of this high infection rate in young women. But this has not happened to date. Frequency of sexual intercourse with infected men is insufficient to explain the data. Thus, it is highly probable that the condition of the genital tract in young women significantly increases the likelihood of transmission whenever unprotected sexual contact occurs. A number of possible hypotheses come to mind. The efficacy of HIV transmission to young women may be increased by:

a. the sexually transmitted infections found in young women and/or other infections of their genital area; 

b. cervical ectopy in young sexually active women;

c. hormonal changes at the onset of menstruation and during the menstrual cycle;

d. the changes in the anatomy of the genital tract as young women reach puberty; and

e. the immaturity of the genital tract in post-puberty young women.

The biology of the female genital tract remains poorly understood. We know more about the cellular structure of lungs, for example, or about the increased protection from HIV infection offered by an intact genital mucosa in monkeys (Miller and Gardner, 1991, for example). In young women, the explanation for their shocking rates of infection may be a combination of some or all of these or other factors. The research agenda is in urgent need of realignment.

 Since in so many facets of the HIV epidemic experiences are gender specific, it must become part of responsible epistemic and programme practice to move on from the constraints of single gender knowledge -- for both men and women -- to an approach that is grounded in human experience. This is only possible if gender specific experience and knowledge can be made accessible to others and if how to let experience shape and reshape theory and practice can be learnt.

 Women's gender specific experiences and knowledge can be accessible in a number of ways: by ensuring that women as well as men shape and determine the agendas, through first person narratives or through the devolution of responsibility for interventions to women and their communities.

 First person narratives provide access which can be subtle and various. Some stories from the epidemic are now being told, a few by women (Rieder and Ruppelt, 1988; Willmore and Roy, 1989; Reid, 1990; UNDP, 1992). Noerine Kaleeba's moving story (1991) presents the experienced in the complex, interrelated way life usually asserts itself. First person narratives can bring to light different perspectives, different points of view and so make them accessible across gender.

 Since, as discussed above, women are more aware of the dynamics of gender, the way these effect the epidemic emerge more clearly in their narratives. It is clear to them that one can understand life situations - being infected, caring for someone infected, for example - only if gender roles and relationships are taken into account. These narratives both present and interpret the relationship between the individual and society and the dynamics of power between women and men. They provide glimpses into men's lives as well as their own and relate individual agency to social and economic structures.

 First person narratives increase understanding. Their truth or falsity or the justification of their knowledge claims will be determined in the same way as first person narratives in general: in their closeness of fit to reality and the extent of agreement with other stories. However, listening to and interpreting such narratives, whether as stories, on film or in consultations, is an acquired capacity. The interpreter must be sensitive to the narrator's purposes in telling her story. Interpretation demands a profound respect for the narrator, for what she says and for the lives from which the stories are drawn.

 Narratives can identify new research and programme needs. A simple example: stories told by women of the discrimination and rejection that happened to them when a new-born child was diagnosed with HIV has led to the proposal that parents be counselled, informed and tested together (Willmore and Ray, 1990).

 Patterns and structural factors will emerge as more women's voices are heard. The less these voices are muted or silenced, the more they will speak with authority and relevance, even when the knowledge and experiences recounted cut across the grain of received knowledge. Women know the nature and causes of their lives.

A critical strategy of this epidemic will be to ensure that women's perceptions, experiences and capacities are able to be expressed, valued, understood and acted upon. In so doing, the discontinuity between HIV-related experiences and HIV-related research and programmes will be lessened.

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

 The second way in which women's gender specific knowledge can be accessible is through devolving responsibility for programme development and delivery to women. If solutions are to be found for men's refusal to protect themselves and others, for women's powerlessness to prevent themselves from becoming infected, bring women together to seek them (Willmore and Ray, 1990; Mongola, 1991). The strategies so decided upon may or may not integrally involve men. We may believe that this is essential but it is not ours to decide. If there is a collective responsibility for the care of people unable to survive independently, bring communities, women and men, together with governments to work out how it can be exercised. Women's knowledge and experiences are essential to the development of effective solutions.

 Once it is recognised that responsible knowledge of human experiences in general and women's experiences in particular is essential to developing effective responses to the epidemic and once people are more at ease and more skilled at acquiring or expressing that knowledge, we will be in a position to face the coming decades with some hope. We will then be able to develop programmes grounded in human experience to address the three central programming areas of the epidemic: changing attitudes and behaviour, caring for the affected and maintaining the social and economic infrastructure of seriously affected communities and countries.

 ENDNOTES

 1. I am indebted to Professor Lorraine Code (1988) for an elaboration of the concept of epistemic responsibility and its relevance as a means of measuring the adequacy of theories.

 2. This critique is more fully elaborated in Reid 1991 and Hamblin and Reid 1991. See also Worth 1989, Stein 1990 and Carovano 1991.

 3. For many sexually transmitted infections in women, the problem is one of diagnosis rather than treatment.

 4. This is not to argue that all women or all men know these aspects of their lives in the same way. It is a point about the lack of such experience and direct knowledge across gender.

5. There are three contributing factors. Firstly, that the early research populations were infected men, secondly, that male researchers have predominated in all disciplines and, thirdly, because of the severe inequalities of wealth between the developed and developing worlds, all early research populations were drawn from developed countries. It should be remembered that there were more infected women than gay men or men with haemophilia in the world at every stage of the epidemic.

6. Professor Anne Jacobson, University of Houston, Texas, drew to my attention that men may have to be reminded to worry about their daughters. It seems harder for men to believe that there is a perspective on the world different from theirs. I am indebted to Professor Jacobsen for assisting in clarifying the conceptual issues in this paper.

 7. A fuller discussion of these data sets can be found in the Reading the Data module of the UNDP training material on HIV and Development. See also, on Uganda, Cohen 1992.

8. There is some evidence that the efficacy of transmission is also high in post-menopausal women, that is, that when post-menopausal women have unprotected intercourse with infected men, the likelihood of their becoming infected is quite high.

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ACKNOWLEDGEMENTS

 This paper was first published in Mann, Jonathan, D. Tarantola and T. Netter (eds.) AIDS in the World, Harvard University Press, Cambridge, 1992, pp. 657-667.

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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