Issues Paper No. 15HIV AND THE CHALLENGES FACING MEN TABLE OF CONTENTS Introduction Acknowledgements Men from different regions of the world representing different ages, sexual orientations, relationship circumstances, HIV status and involvement or non-involvement in the response to the HIV epidemic provided input for this paper. Much of this came in the form of written and verbal responses to a brief set of questions prepared and distributed by the UNDP HIV and Development Programme.1 We would like to acknowledge and thank these men for their contributions. We asked each respondent whether they would prefer to remain anonymous or have their comments attributed to them by name. Respondents chose different options. Those who requested to remain anonymous provided us with a descriptive phrase to identify their contributions while others are identified by name and nationality and, in some cases, by profession. Cautionary Note Many respondents were quick to point out the difficulty of generalizing about men, arguing that "there are as many men's lives as there are men,"2 and urging us to "stress how different we [men] are from each other."3 Bob Connell, an Australian sociologist, pointed out that:
We have attempted to heed these warnings, without being immobilized by them, and ask readers to do the same. Language Policy Where direct quotes from contributors are used, there may be some inconsistencies with UNDP HIV-Related Language Policy. Since the beginning of the HIV epidemic, scores of men have been directly and indirectly affected by HIV. As of 1 January 1996, the Global AIDS Policy Coalition estimates that men represented 59 per cent of the projected 20.5 million HIV infected adults around the world, and their numbers continue to grow. The large majority of all people living with HIV (21.4 million; 92%) are from the developing world, and men are no exception. Of the approximately 2.5 million men infected with the virus between January and December 1995, some 95 per cent were from the developing world5. The Global AIDS Policy Coalition projects that by the year 2000, there will be a minimum of 38 million adults living with HIV, and possibly as many as 110 million6. New infections among men during 1993 were estimated at 139.73 per 100,000, compared to 99.15 new infections for every 100,000 women7. Sexual transmission is currently held to be responsible for 86 per cent of all HIV infections, and while men with HIV tend to be older than the women infected, they are still primarily young adults at the prime of their lives. Finally, while many men are coping with being infected with HIV, there are even more who are experiencing losses due to HIV-related illness and death among their family, friends and colleagues. Against this backdrop, it is reasonable to wonder why, more than a decade into the epidemic, we feel it important to focus this Issues Paper on the challenges that HIV poses to men. In its simplest form, the answer is that we must examine HIV from every angle, ignoring none, in order to improve our capacity to respond to the epidemic. Every day, more and more people are becoming infected with HIV, caring for family and friends who are suffering, and grieving the passing of those they have loved. While substantial efforts to respond are being made around the world, the epidemic continues to grow and to have a devastating impact on the lives of far too many of us. The need for more effective strategies to respond to HIV demands that we rethink old issues, reexamine previous assumptions, and leave no questions unasked. Michael Helquist, an expert in HIV communication based in San Francisco points out, "[h]ow we think about men -- and women -- affects how we try to fight AIDS 8." Men have always been a part of the HIV "problem", and they have played vital roles in the search for an effective response. Examples of their involvement includes speaking out as individuals living with HIV, providing care to family and friends, working as professional researchers, educators and care providers, and assisting in the development of local, national and global programs and policies to respond to the growing epidemic. However, there has been no systematic examination of men's multiple roles in the epidemic, the many factors that influence them, as well as the obstacles that prevent more men from becoming involved. While many men have responded to HIV with a sense of urgency, responsibility, and compassion, they often appear to be the exceptions rather than the norm in their communities or professions. At an individual level, there are many men who continue to engage in behaviours that place them and others at increased risk for HIV. Their actions may reflect a lack of awareness or understanding, or simply human frailty in the face of the immensely difficult task of maintaining safer sexual behaviours over time. Yet there are many others whose actions -- or lack of action--can only be considered irresponsible, selfish and even cruel. These men do not heed the warnings, do not see themselves as responsible, or seem to simply care more about their own pleasure than the risk their actions pose to themselves and others. In the extreme, they are the men who lie to their partners about their sexual history and even their HIV status, sexually exploit those with less power, and use sex as a form of violence against women, children and other men. In many communities, the broader response to HIV has divided the infected from the uninfected, perpetuated stigmas, and aggravated the suffering of people living with the virus. Throughout the world, people have been tested for HIV against their will, dismissed from jobs, kept out of schools, incarcerated, abandoned by their families, denied medical care, beaten and killed in reaction to HIV. Because men hold most positions of power in families and communities, they must also bear the greater part of the responsibility for these misguided responses. And finally, in nearly every region of the world, national and international governmental bodies have failed to act in a timely and effective manners. Governments -- male dominated in nearly every country in the world -- continue to bar admission to those with HIV infection, test suspect populations without consent, and simply refuse to acknowledge that those affected "matter" 9 and that something needs to be done. Many international agencies also continue to let the politics of power define their agenda and their actions, impeding the development of effective and sustainable local responses to HIV. With this bleak scenario in mind, it is imperative to ask why this is so and what men -- together with women -- can do to make it different. The following discussion will focus on three primary areas of concern: HIV-related behaviour and behaviour change, illness and care, and death and its impact on survivors. The discussion in each area will attempt to illuminate ways in which men in different circumstances and different parts of the world are responding to these challenges. It will also focus on obstacles to an improved response and ways to assist men in the effort to face the challenges of HIV. The goal of the paper is to serve as a starting point for further discussion and understanding of the challenges that HIV poses to men and, hopefully, expand the capacity to respond. HIV-Related Behaviour and Behaviour Change
Around the world, many men and women have made dramatic changes in their behaviour and their lives in response to the need to protect themselves and those they love from HIV, as well as to assist those infected to live full and meaningful lives. As HIV has spread across the globe, there has been a counter wave of change in attitudes and practices that has been a source of hope for all who struggle in the face of this epidemic. Yet the virus continues to spread, in large part because many people continue to hold views and engage in behaviours that facilitate its transmission. Hence, while positive changes are occurring, they are not enough. Given that nearly 90% of HIV infection is attributed to sexual transmission, conditions, norms and practices that facilitate the sexual spread of the virus must be the central focus. HIV is transmitted sexually through unprotected sexual intercourse--anal, vaginal, and oral. Because this is known, behaviours to eliminate or reduce the likelihood of acquiring HIV infection have been fairly easy to identify. People have the options of not having sex, having unprotected sex with only one other uninfected, faithful partner, or engaging in non-penetrative or protected sex (eg. sex with a condom, dental dam, or female condom). Individuals may choose strategies involving some combination of these behaviours, either concurrently or consecutively, to meet diverse or changing needs. Early efforts to promote behaviour change in response to HIV focused almost exclusively on identified "high-risk groups." In recent years, the focus has broadened somewhat, including increased attention to understand and support change among women. While this expanded focus has been necessary and significant, it has still ignored the development of targeted efforts for most men. 11 Because men in most cultures dominate decision-making and have greater independent control over sexual relations, it is imperative that efforts to respond to the epidemic and promote behaviour change place greater emphasis on men. As a first step, a better understanding is needed of the process of HIV-related behaviour change among men and the factors that motivate their sexual behaviour, both unsafe and safe. There are a number of models of health behaviour that provide a foundation for understanding the process of change. All start from the premise that individuals can, and do, make decisions about their behaviour and, at least potentially, have the capacity to translate those decisions into action. These decisions and subsequent behaviours are recognized as being influenced by various factors or determinants. Some are considered to be individual or internal (e.g., a person's perception of risk, their view of the costs and benefits associated with changing their behaviour, and their perception of their ability to change), while others are defined as external or societal (e.g., the quality and cost of a product or service, social norms that define expected and appropriate behaviour, laws and regulations).12 Behavioural theory recognizes that the determinants of safe and unsafe sexual behaviour will vary by age, culture, relationship status, sexual orientation and general life circumstances. The factors that motivate a young man to have safe sex with his fiancée may be quite different from those that motivate an older, married man to do so with a female sex worker, or a school-age boy to do so with a male friend. Likewise, the factors that influence a man's behaviours in a traditional African community will in some ways differ and in some ways potentially be very similar, to those that influence an urban European or Asian man. Adopting new sexual practices and sustaining them consistently over a lifetime are also understood to be distinct behaviours posing unique challenges. While these theories provide a basis for understanding health behaviour and the process of behaviour change, they seem to fall short when attempting to explain or predict sexual attitudes and behaviours.13 As Damien Rwegera, a Rwandan respondent, noted, sex is "the ultimate coded and intimate exercise...."14 Men and women engage in sexual relations for an array of reasons that range from the pursuit of pleasure, desire for intimacy, expression of love, definition of self, procreation, domination, violence, or any combination of the above, as well as others. How people relate sexually may be linked to self-esteem, self-respect, respect for others, hope, joy and pain. In different contexts, sex is viewed as a commodity, a right, or a biological imperative; it is clearly not determined fully by rational decision-making. Health behaviour theory is limited by its focus on the individual. In fact, the factors influencing sexual decisions and behaviours involve a complex process that generally involves two people, not just one. How the threat of HIV impacts on people's behaviour is even more complex. It forces people to assess the implications of their own and their partners' past and current behaviours, as well as long-held beliefs, hopes and fears and, ultimately, it forces them to talk about these issues with their sexual partners. Adopting new behaviours in the face of HIV is extremely difficult. To stay free of infection, individuals must adopt effective strategies and apply them consistently in some form over a lifetime; occasionally failing is only human. As Allan Berube, a historian from San Francisco, writes,
Men who responded to the UNDP request for information provided a number of insights into the meaning of sex in men's lives and the reasons why men engage in sexual relations, both safe and unsafe. There are few surprises, but their input contributes to an understanding of what motivates men to have sex, and factors that might facilitate -- or obstruct -- HIV-related behaviour change. Among respondents, sex was noted as being important to men for a variety of reasons. It was mentioned in relation to the desire to love and be loved, connect with others, establish a family and perpetuate lineage, or satisfy a physical or biological need. Sexual relations were also identified as a source of pleasure, emotional bonding, and a means of expressing power, adulthood and "personhood." Respondents also noted that while sex is a commodity for some men, for those who engage in sex for pay, it is part of a strategy to survive. As would be expected, men noted that sex and reasons for having sex change with stage of life and relationship status. Young, single men tend to have more partners and to view sex as a rite of passage, a way to establish their masculinity, a means of building self-esteem, and a process of exploration. A 24-year old respondent from the U.S. observed of himself and his peers, "We want to explore, we are energetic, and being male, we want to have sex -- a lot."16 In Zimbabwe, researchers found that "boys clearly feel that sexual experience is something of which to be proud...to have sex is to be a hero among one's peers."17 A number of men from diverse cultural backgrounds commented on peer pressure among young men to "keep up" by having sex at an early age and with many partners. Among older men and those in established relationships, sex was more often linked to the expression of love and intimacy and the desire to procreate and sustain their lineage. Damien Rwegera asserted that one of the most important things in his life is
Other men also noted the continued importance of sex among older men as a means of expressing masculinity and virility. While none of the respondents mentioned it, the global pattern of older men having sex with younger women, both consensually and otherwise, may also be tied to issues of prowess and control. Mohamed Osman of Somalia argued that for some older men, success in sexual relations "involves the honour and pride of men." He went on to note that "success" is defined by one's sexual performance, the ability of a man to "show his virility" and "not feel impotent." 19 While many respondents noted that the sexual behaviours of some men are changing in response to HIV an AIDS, nearly all felt that changes were not sufficiently widespread or rapid enough, particularly among heterosexual men. The adoption of safer sexual practices was noted by respondents to be frequently tied to the experience of knowing someone infected or affected by HIV. Concern for family members was also a significant motivating factor. Respondents gave more varied reasons for why they think more men are not adopting safer behaviours. They mentioned lack of awareness of HIV, denial of personal risk, fatalism, absence of supportive norms, perceived protection provided by marriage or a stable relationship, the negative implications of safe sex on intimacy and trust, as well as lack of concern for the effect of one's behaviour on one's partner. Gaining a deeper understanding of why some men are changing and why others are not is fundamental to addressing the challenge of behaviour change among men. Implications For Behaviour Change If uninformed, unskilled, unmotivated, unsupported or simply lacking access to "protection", men will still have sex and, more often than not, it is likely to be penetrative and unprotected. A simple truth is that it is natural to have unprotected sex. This is a fundamental barrier to the adoption of safe sexual practices, but it is important to go beyond it to understand why so many men continue to engage in unsafe sex. A fundamental premise of most HIV prevention efforts is that understanding the risk posed by HIV and the means of protecting oneself are critical foundations for behaviour change. One respondent, sharing his personal experience, noted that:
This testimony from a college educated man in the United States, reflecting on his awareness of HIV in the late 1980's, is a shocking reminder of how little even those individuals who would be expected to have access to accurate information may actually know. Despite the efforts of HIV-related education throughout the world, numerous respondents noted that lack of accurate information continues to be a fundamental barrier to behaviour change for many men, especially in the developing world. Because men, (rather than women) generally have greater access to information about sex and assume the more assertive and directive role in sexual decision-making, targeted efforts are needed to provide diverse populations of men with information about HIV transmission and prevention. Knowledge alone, however, is not enough to influence behaviour. Health educators recognize that acquiring skills -- or perceived skills -- to correctly use condoms, say "no" to sex, or negotiate safer behaviours with a partner is also necessary for behaviour change. Studies among men in the Caribbean found that condom skills are relatively easy to teach and skill development can have a positive impact on behaviour.21 The transfer of negotiation skills has been found to be considerably more complex.22 Efforts to transmit information, knowledge and skills are, in essence, designed to change the internal factors that affect behaviour, not the context in which they occur. Yet sex -- and safer sex -- is inextricably linked to the social and cultural context in which the behaviour takes place. Many of the reasons suggested by respondents to explain men's behaviours reflect social norms related to gender, relationships, power, and sex. Around the world, these norms have been identified as significant determinants of safe and unsafe behaviours, yet there is growing evidence that they can and do change. 23 In many cultures, norms of masculinity encourage men to deny fear, doubts and any feelings of vulnerability. In some instances, men are urged to demonstrate their manhood by taking risks. Noting the attitudes of homeless boys living on the streets of Rio de Janeiro, Patrick Larvie writes, "the association between heterosexual masculinity and health was very clear: 'real men' do not get sick and do not need to worry about getting sexually transmitted diseases."24 Denial of vulnerability is a powerful deterrent to implementing behaviour change; as long as men are unable or unwilling to admit that HIV could reach them, they are unlikely to have the motivation needed to change. As noted by respondents from many cultures, norms of masculinity also encourage men to view sex as a form of conquest and expression of male prowess. According to Ernesto Guerrero of the Dominican Republic, "[i]n some regions, men have been educated under the premise that having many girlfriends (women) is the best symbol of virility and power." At its extreme, sex can become an act of violence with domination or humiliation the apparent goals. Whenever these are primary reasons for engaging in sex, respect for one's partner can be expected to be absent. Without respect, a concern for a partner's health or the health of future children, will have little impact on the behaviour of men. In many cultures, societal norms (and human physiology) permit men to take little responsibility for the consequences of their sexual behaviour. Generally, women bear the burden of responsibility for pregnancy, often even where they are the result of rape. Because a man cannot be easily linked to his offspring --including a man with HIV -- it remains possible for men to deny paternity and any responsibility. A European respondent asserted that in order for behaviour change efforts to succeed, "[w]e need to hammer in [to men] their responsibility for their dependents and themselves."25 As it is, there are many reports of women being blamed for bringing HIV into a family (generally because their HIV status is identified first, through the illness of a child), in spite of the fact that the socially sanctioned behaviours of their male partners were more likely to have been the cause of the initial infection. Commenting on these issues, Bob Connell notes:
This discussion offers some insights into men's sexual behaviour, and perhaps more than anything, points to its complexity and the need for a greater understanding of how men behave sexually and why. The Impact of Development on Behaviour While norms can have an impact on behaviour, so too can their absence. Discussing the challenges facing gay men in Poland, one respondent noted that "there is no model of how to organize their sex lives..."27 and that this is a factor contributing to men having unsafe sex. This observation may be equally valid for men in a society undergoing a rapid transition, a situation common to many parts of the developing world. If the lifestyle of their parents and grandparents is no longer viable, men lack models of how to organize relationships and other aspects of their sexual life. Regardless of its root cause -- whether rapidly changing social mores or deteriorating socio-economic conditions -- the absence of viable models is likely to influence men's behaviours. In many societies undergoing periods of transition, war or economic crisis, men are often forced to travel to other towns or countries in search of work. Male mobility and migration disrupt traditional family relations and influence male sexual behaviours in many parts of the world. One of the primary reasons given by respondents for engaging in sexual relations outside of marriage was physical separation from a spouse, and simple loneliness, both physical and emotional. Research on migrant workers who travel from Lesotho to South Africa, often for years at a time, found that "sex often becomes a source of escape and solace" from what is otherwise a lonely, harsh existence.28 As Robert Mugemana noted, in Kenya, "[f]or men who leave their wives behind in the rural areas while they pursue employment in the cities, brothels offer an inexpensive source of sexual activity...."29 On the flip side of this equation are the men and boys who enter the sex industry to survive. While their numbers are small relative to the women and girls involved in commercial sex work, male sex workers enter this work for similar reasons. K.M Subhan, a Bangladeshi respondent, observed that
Similar to migrant workers and men in the military, the men and boys involved in prostitution constitute a segment of the population at increased likelihood of exposing themselves to HIV as a result of their status and consequent behaviour. Finally, another aspect of development that is likely to affect men's attitudes and behaviours is the changing status of women in many societies, and the consequent changes in relations between women and men. As more women become educated, employed and independent, men may feel that they are losing power. Research on domestic violence in Papua New Guinea revealed that many men saw the growing independence of their wives as a threat. "Men felt both excluded from development assistance efforts and resentful of their loss of dominance, feelings that translated into increased domestic violence."31 Sensitive to the potential for a similar backlash effect, Brendan Bain, a respondent from Jamaica, asserts that behaviour change efforts must be careful not to alienate men and suggests that the success of behaviour change programs will depend partly on "the degree of care which is taken to preserve male identity and men's feelings of self-worth."32 In a similar vein, Damien Rwegera from Rwanda asserts that,
While much of the preceding discussion focuses on why men are likely or unlikely to be motivated to adopt safer sexual behaviours, they must also have the capacity to change. Many of us working on issues related to women and HIV, have asserted that men have the power to change their sexual behaviour -- something women often lack. Yet, admittedly, this argument overgeneralizes and oversimplifies the diverse experiences of men. Men -- and boys -- who engage in sex in exchange for money or goods often have little power in encounters with older, stronger, wealthier men. Other men may lack the power or self-esteem to reject norms and behaviours that are proscribed, in essence, by other men. For many men, the capacity to choose safer sex may be circumscribed in myriad ways depending on the socio-economic circumstances of their lives. Poverty is a recognized barrier to good health. Limited economic resources can put condoms and other services out of reach and the inability to meet basic needs may impede a focus beyond the most immediate future. Illiteracy limits access to information. Lack of intimacy, lack of security and lack of hope may all limit one's capacity to respond to the threat of HIV. The empowerment of men is seldom a topic of discussion, but needs to be considered in the effort to meet the dual challenges of HIV and development.
The prevention of HIV and the provision of care and support for those affected are overlapping and interrelated issues. Efforts to encourage behaviour change are most effective when they incorporate people living with HIV and those directly affected by the epidemic. For men, who are traditionally less involved in the provision of care, this has significant implications. Clearly, there are many men -- and women -- who have responded to those living with HIV and AIDS with compassion and concern. Among respondents who have experienced HIV related illness among their family and friends, feelings shared included deep sadness, compassion, frustration, helplessness, anger, fear, and admiration for the courage and perseverance of those infected. While none of these responses are unique to men, some respondents identified factors that may affect how men in particular experience these emotions. Upon learning that his younger sister was HIV infected, Omari Kokole, a Ugandan man, noted that he told her "not to worry too much and encouraged her to continue with her education." Reflecting back on that experience after he was tested for HIV, Kokole noted that "[d]espite my external calm, I was deeply shaken.... Rather than pretend not to be worried and sad, I should have helped her to confront and deal with these very painful and unavoidable emotions."34 While responding to news of the infection of a loved one is difficult for any person, social norms that define an "appropriate" male response may make it even harder for men to show their support and concern. Men have been deeply affected by HIV-related illness among those they love, yet a number of respondents acknowledged that "men have a bad reputation when it comes to the topic of their support for the sick."35 Caring for the sick is seen as women's work in most cultures, yet few things take more courage than caring for a loved one who is dying. While many men have provided care in both professional and familial roles, the burden of care for those with HIV in most societies is still being born largely by women. Robert Mugemana from Kenya has written,
The most notable exception to this pattern has been the response of gay men, initially in the U.S. and Europe, and now in numerous developing countries. As Bob Connell points out, "[h]eterosexual men have a great deal to learn from homosexual men in 'Western' countries. It is the gay communities that have made an immense effort at caring for people living with AIDS...."37 This observation applies to many gay communities in the "non-Western" and developing world as well. Even as some men have responded by providing care and support to people living with HIV, in much of the world, blaming and stigmatization have characterized the responses of far too many individuals, communities and governments. Respondents from every region noted the effects of this on the experiences of those living with HIV, as well as on individual and community level efforts to confront the epidemic. Mohamed Osman of Somalia noted that, "[t]he ones affected by [HIV] feel humiliated, discriminated against and abandoned, even by their closest family members, by the doctors, and by the society."38 According to Godfrey Sealy, a Trinidadian man, "the threat of public disclosure is more frightening than the disease itself." This fear leads many men with HIV disease to deny the nature of their illness, and many friends to avoid visiting those hospitalized for fear of being associated with the disease. 39 Fear of HIV-related stigmas have also reportedly had an impact on men's willingness to pursue HIV-antibody testing and counseling40, or share their test results with others, both of which can be important in stemming the further spread of the virus. Nick Deocampo and Jomar Fleras note that, in the Philippines "[f]ew [young males] will consent to testing and fewer still will acknowledge they were infected for fear of being ostracized by their peers."41 Describing his own HIV-antibody test experience, Omari Kokole, a Ugandan man, confessed: "I hesitated to confide in others partly because I feared I would be harshly judged and ostracized," noting a tendency in Uganda to shun those with HIV42. In 1989, Philly Bongoley Lutaaya, a well-known Ugandan singer, was the first public figure in his country to openly acknowledge that he was living with AIDS43. What is shocking is the difficulty of disclosure, even in one of the countries hardest hit by HIV. Even today in the Caribbean, another region with extremely high HIV infection rates, Godfrey Sealy has written: "[t]he ill and dying are faceless: we do not know who they are and society does not seem to care."44 In addition to the painful personal burdens of secrecy and consequent isolation, the choice of those infected to remain hidden facilitates misperceptions about who is vulnerable to HIV. The unwary continue to believe that they need not concern themselves with this epidemic. The increased involvement of men in caregiving is critical. Caring for those living with HIV is undoubtedly the best way to understand who the affected are and what the illness means. The participation of men in caregiving is also essential in allowing communities to respond adequately to the rapidly growing numbers of people living with HIV and AIDS. How people with HIV experience their illness is fundamentally determined by the support they do or do not receive from their families and communities. Martin Suarez, an Argentinean man living with HIV, links his ability to overcome the depression he experienced with his first opportunistic illness to "the affection and care of my loved ones."45 Without question, men have the capacity to provide compassionate care to those living with HIV. Unfortunately, their involvement remains limited in many parts of the world. Why this persists appears, at least in part, to be due to gendered norms that circumscribe men's involvement in caregiving. However, these norms are being challenged and transformed by circumstances that are forcing men to assume caregiver roles. In Zambia, it has been observed that sons are often called on to care for their father after their mother has passed away. As more responsibilities shift to men and boys, they will need training and support to prepare them to take up these tasks, and enable them to gain a deeper understanding of the realities of HIV in their roles as caregivers.
Around the world, men are dying from HIV-related illnesses, as well as experiencing losses among family, friends and colleagues. How men and their families and communities experience these deaths cannot be measured. The impact of any person's death will reflect the roles that individual plays in their family and community, as well as their unique experiences, talents, knowledge and skills. The experience of dying of AIDS will be defined, in some ways, by both gender and the disease. Because of the very different roles played by women and men, death is a gendered experience; the death of a man will impact families and communities in very different ways than the death of a woman. As David Nelson, an Alaskan Native man living with HIV observed, when he dies, his family will lose "a father, a brother, a son."46 Cheikh Niang of Senegal notes that, in many societies where men occupy the position of head of the household, a man's death "can signify the loss of economic support or a social base...."47 In societies where women do not have access to paid work or are prohibited from inheriting or owning property, the death of a male partner and provider can have a devastating and far-reaching effect. Reflecting on the death of a fellow Kenyan, Robert Mugemana notes:
As men die, responsibilities such as these must be taken up by others. Tradition and norms in most cultures suggest that many will be shouldered by other men, leaving those who are healthy with increasing dependents to provide for. And while there is an understandable tendency to focus on the economic and social consequences of men's premature deaths, the loss of love and emotional support they provide will also create voids that cannot easily be filled. As the Somali respondent noted, the death of any person "leaves a great vacuum in the hearts of those who loved him or her." 49 When AIDS is the cause of death, the impact can be even more painful and complex. In Rwanda, Damien Rwegera notes,
Rwegera's comment points to two unique aspects of the epidemic: the impact on survivors of the stigma and shame associated with HIV, and the harsh reality that, more often than not, more than one member of a couple or family is infected with the virus. Commenting on the situation in Uganda, Omari Kokole writes: "[d]ifficult as it is for a family to discover that one among them has this disease, think how much greater the tragedy when two or more of its members is stricken."51 Under such circumstances, the impact on the family and the community is magnified, particularly for those survivors also living with HIV. As David Nelson noted,
These sentiments were echoed by Argentinean, Martin Saurez, who commented,
Those who suffer the loss of loved ones also need to be supported in their grief and given meaningful options for the future. This will require addressing the imbalances of gendered divisions of labour and power that can make the loss of a male partner and provider a devastating tragedy for surviving women and children. Yet this response should also include efforts to provide men with support and opportunities to acknowledge their grief and move on with hope in their lives. Men who have lost partners, family and friends to HIV experience sadness, anger, frustration and grief. Numerous respondents argued that men experience the loss of a loved one no differently than a woman, that grief is universal, not gender specific. Others, however, noted that norms that define appropriate male behaviour may make grieving more difficult for men. Juan Jacobo Hernandez asserted that "men are supposed to be strong, stern, they're not supposed to cry or show weakness," and that, "male grieving is scarcely shown."54 When a European man shared the experience of losing a grandparent (unrelated to HIV), he noted with regret that "...the last time I saw him,...I did not feel able to hug him and tell him I loved him, for reasons of male embarrassment or the traditions of the family and so on."55 According to Cheikh Niang from Senegal, "[i]n general, men remarry rapidly after the death of their partners and rarely display any obvious expressions of grief."56 This response could reflect a variety of factors, but may well be connected to social norms that proscribe how men grieve. While it may be impossible to measure, unexpressed or unresolved grief must inevitably impact the health of individuals and their communities. Death resulting from AIDS can have a devastating impact, yet among the men who provided input for this paper, many credited HIV-related experiences of loss with mobilizing them to do something to respond to the disease. Some noted feelings of frustration and helplessness while others expressed anger at public health specialists and governments and at the "inadequate and insufficient individual and social response."57 Perhaps most importantly, some credited their adoption of safer sexual practices and/or their decisions to become personally and professionally involved in the broader struggle against HIV to the death of someone close to them. Allan Berube, who lost his partner to AIDS, eloquently described how the death of community members and loved ones in San Francisco mobilized that community to respond:
This description offers a template for others confronting the many challenges posed by HIV, a way of finding meaning in tragedy, as well as a testimony to the capacity of individuals and communities to change to meet the challenges of this disease. How men respond to HIV, both as individuals and as members of communities, has and will continue to have a fundamental impact on the shape and texture of this epidemic. While men admittedly constitute a broad and diverse segment of the world's population, this paper has attempted to focus on the challenges that HIV and AIDS pose to them as a group, the ways they are responding, and barriers to a more effective response. Profound changes are needed among men at the individual, community, national and even international level in order to respond effectively to the HIV epidemic. At the individual level, more men must adopt safer sexual practices to protect themselves and their sexual partners from infection. Prevention efforts must continue to be built on values that support communication, shared responsibility and mutual respect between women and men. These efforts will radically redefine norms that define masculinity, male sexuality, and the place of women in society. Prevention efforts must also be built on a foundation of compassion and inclusion of those living with the virus, both because it is their right and because of the benefit it brings to those who are uninfected. Specifically, this should include the increased involvement of men in the provision of care. This will help dismantle stigmas and stereotypes about those infected and affected and contribute toward a more supportive and compassionate community response. At the national and international level, policy-makers and programme planners must reevaluate assumptions about men and the HIV epidemic. With the exception of gay and bisexual men, and some small, select target populations (eg. truckers, incarcerated men) efforts to combat the spread of HIV have largely ignored the vast and diverse population of men. This lack of attention is intolerable at this stage in the epidemic, and men -- as well as women -- from the around the world are calling on decision-makers to reconsider and redefine their response to include men in both the definition of the problem and part of the solution to HIV. Men must be involved, together with women, at every level and each step of this process. This Issues Paper is a first step toward soliciting and encouraging that involvement, and is written with the hope that together we can develop more effective responses to the challenges of HIV. HIV: The Challenges Facing Men Behaviour and Behaviour Change
Living with HIV Infection, Illness and Care
Death
General
This paper was prepared for the UNDP HIV and Development Programme by Kathryn Carovano in January 1995. Kathryn Carovano is an independent consultant working on HIV/AIDS related issues. She has worked on HIV prevention and education in Latin America, Africa and Asia since 1987, primarily under the auspices of The Johns Hopkins University where she served as Senior Programme Officer on the AIDSCOM Project from 1987-1992. She has also been involved in extensive research, writing and programme development focusing on women and HIV/AIDS. She is a consultant to UNDP on research, development and gender aspects of the response to the HIV epidemic in developing countries. At present, Ms. Carovano is a doctoral student in public health at The University of Michigan. |
