EGM/HIV-AIDS /2000/WP 1
7 November 2000

Expert Group Meeting on
"The HIV/AIDS Pandemic and its Gender Implications"
13-17 November 2000
Windhoek, Namibia

 

 

PREVENTION, TREATMENT AND CARE IN THE CONTEXT OF HUMAN RIGHTS

Prepared by*

 

Professor Cathi Albertyn
Centre For Applied Legal Studies
University of the Witwatersrand, South Africa
(Consultant)

 

*The views expressed in this paper, which has been reproduced as received, are those of the author and do not necessarily represent those of the United Nations.


 

1 THE ADDED VALUE OF A HUMAN RIGHTS APPROACH TO HIV/AIDS AND GENDER.

Human rights have been central to the international community’s response to the HIV/AIDS epidemic. This approach initially emphasized the inclusion of, and non-discrimination against, particular risk groups. However, as the epicentre of the epidemic has moved from the first to the third world and from (gay white) men to (poor black) women, so the rights emphasis has begun to shift from a focus on individual rights of privacy and non-discrimination to embrace more global social and economic concerns of poverty and inequality. Social and economic rights (especially the right to health-care), gender equality and women’s human rights, as well as men’s responsibilities and rights, are beginning to emerge within the international discourse of human rights and HIV/AIDS. These provide new weapons in the fight against the pandemic at the same time as they raise new conceptual and practical challenges.

Simply put, human rights are inherent to each person. A human rights approach entails an acceptance that there are certain claims or entitlements (often derived from basic human needs and enshrined in rights) that are universal and that any person has over others – individuals, groups, societies or states. It thus involves a corresponding set of responsibilities and obligations on the part of the state (and increasingly of non state actors) to ensure that those claims are met. Human rights also have a moral and normative content as universally recognized standards for ensuring human development, well being and dignity. This is described in relation to development as follows:

A rights-based approach to development describes situations not simply in terms of human needs, or of developmental requirements, but in terms of society’s obligations to respond to the inalienable rights of individuals. It empowers people to demand justice as a right, not as a charity, and gives communities the moral basis from which to claim international assistance where needed.

Importantly therefore, a human rights approach entrenches the principle of accountability of governments to people. Governments have a responsibility (derived from international legal frameworks and, to differing degrees, from national constitutions) to ensure these rights are met. Civil society, if it is sufficiently empowered to do so, may assert these rights to improve the quality of human lives. The value of the human rights approach lies not only in principles such as state accountability and popular participation, but also in the transformative potential of rights to alleviate injustice, inequality and poverty. Rights are moral norms, standards of accountability and weapons in the struggle for social justice. They may also be legal entitlements. In the complex task of unraveling the relationship between gender inequality and HIV/AIDS, a human rights approach allows us not only to understand the multiple ways in which women are affected by HIV/AIDS, it also sets up a vision for future and a mechanism for achieving this, by establishing standards by which to hold governments accountable to claims for protection and support.

First codified by the international community in the 1948 Universal Declaration of Human Rights, international human rights have been codified in a number of legally binding international covenants and in agreements and declarations of persuasive moral force. There exists at international level a comprehensive legal framework for the protection and promotion of these rights, with the Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW) being the key binding document on women’s rights. However it is only recently that this international legal framework of rights has begun to take account of the needs and concerns of women or people infected or affected by AIDS. The 1990s, in particular, saw the development of women’s human rights, especially in the areas of violence against women, reproductive rights and sexual rights. While many of these advances are located in documents that are not legally binding (the Declaration of Human Rights of the Vienna World Conference on Human Rights, 1993; the Program of Action of the ICPD, Cairo 1994, and the Declaration and Platform for Action of the Fourth World Conference on Women in Beijing, 1995), they are gradually being integrated into the interpretation of the Covenants on Civil and Political Rights (CCPR) and Economic, Social and Cultural Rights (CESCR) and, especially, into CEDAW. In relation to HIV/AIDS, the human rights approach was broadly captured in the HIV/AIDS and Human Rights International Guidelines, and (in relation to women) increasingly in certain aspects of the ICPD Review document and the Beijing +5 Outcomes Documents (although mostly in health) and in the CESCR (again largely in health) and CEDAW (mostly health related).

However, human rights are not a panacea and their value lies as much in our capacity to use them strategically as in the norms that they espouse. This has several implications. Firstly, rights need to be located within an understanding of people’s lives. In relation to gender and HIV/AIDS, the starting point is to understand the actual gendered context in which people infected and affected by HIV/AIDS live, and how this structures their vulnerabilities and their rights (and lack of them). Secondly, the political and legal context in which rights are deployed is important. Thirdly, we should always be aware of the benefits and the limitations of human rights (at international and national levels), and the consequent possibilities of rights as a tool for addressing HIV/AIDS. These understandings shape our ability to adopt the correct practical and strategic rights-based interventions both internationally and in particular regional and national settings.

Part 2 of this paper will sketch the broad gendered context of the epidemic, followed by part 3 which will look at the multiple human rights implicated in the issues of prevention, treatment and care (and some of their current international sources). Drawing on parts 2 and 3, part 4 will outline recommendations for policies, programmes and action by the international community, national states and civil society. In doing this, it will also highlight some of the conceptual and practical barriers that need to be factored into this.

 

2 THE RELATIONSHIP BETWEEN GENDER INEQUALITY AND HIV/AIDS.

The concentration of HIV/AIDS in the developing world and in the marginalized communities of the first world confirms that the HIV/AIDS pandemic mirrors the conditions of global inequality. Tracking the path of least resistance, HIV/AIDS flourishes in conditions of poverty, conflict and inequality, and in states with weak resources and capacity. Within these broad political and economic inequalities, the intersection of HIV/AIDS and gender inequality is relatively well documented. Throughout the developing world, and on the margins of the first world, statistics show that women and girls are increasingly bearing the brunt of the epidemic. Their vulnerability relates to infection, the gendered personal and socio-economic impact of living with HIV or AIDS, and the enormous burden of care that women inevitably bear.

    1. Vulnerability to infection.

While both women and men are vulnerable to HIV infection, the context of gender inequality places women at greater risk of being infected and affected by HIV/AIDS. Although physiology affects women’s greater risk of HIV transmission, it is women and girl’s relative lack of power over their bodies and their sexual lives, supported and reinforced by their social and economic inequality, that make them such a vulnerable group in contracting, and living with, HIV/AIDS. At the same time if women as a group are more vulnerable to HIV/AIDS than men, women’s vulnerability in relation to each other is further fragmented by a combination of factors such as race, class, age, ethnicity, urban/rural location, sexual orientation, religion and culture. Similarly, differences among men also structure their vulnerability to infection, and their ability to resist the dominant social norms that shape behaviour.

Poverty.

Poverty forces both women and men into precarious economic and social lifestyles that shape their vulnerability to HIV/AIDS. Poverty therefore, constrains the choices that women and men are able to make in relation to their lives, including their sexual lives. Women’s particular vulnerability emerges from their greater economic vulnerability. Across the world, it is women’s lesser access to economic resources than men that makes them particularly dependent upon men to access such resources. The intersection of poverty (or economic inequality) with gendered social inequality therefore ultimately shapes women’s greater vulnerability to HIV/AIDS. This is most graphically illustrated by the reality that poor women may resort to bartering sex for survival. Most obviously, this occurs under the rubric of commercial sex work across the world. However, there is widespread evidence in Africa of other forms of ‘bartering’ behaviour that are not seen as ‘sex work’ or prostitution. Here women form sexual relationships to ensure food and maintenance for themselves and their families. Thus, in many societies, men provide women with desired goods in return for sexual access on a one-off, short- or long-term basis. Sex may also be traded for a job, permit or promotion in the employment sphere, and for marks or fees in the educational sphere. Most of this sex is unsafe because women risk loss of economic support from men by insisting on safer sex.

Lack of power in sexual relations.

In countries across the world, sexual activity is framed by intensely patriarchal social, cultural and religious norms that result in women having little or no say over sexual relations. It is widely held in many cultures that men have the right to make all decisions over sexual relations. Research across the world has found that the conditions and timing of sex are defined by male partners, giving women little or no opportunity to discuss or practice safer sex. Within this, an acceptance of male infidelity and an expectation of female monogamy are almost universal. One of the results of this is that young women and girls are particularly at risk. However, research in Zimbabwe and Thailand found that in most cases men introduce HIV to the family unit, making monogamous married women a high-risk group. In Uganda, research shows that HIV risk is never the only thing that women have to worry about. Reputation as a ‘proper and reproductive woman’ must be protected if status within the community is to be maintained. In Muslim countries in Asia and Africa, religious and cultural taboos on talking about sex and sexuality, coupled with gender roles, prevent women from negotiating condom use.

Young women and girls are particularly vulnerable here, as statistics in Africa and the Caribbean reveal.

At the same time, the picture is not as clear cut as this, and it would be incorrect to adopt a simple reductionist approach that contrasts women’s powerlessness or subordination with male power. This would be to deny women’s power in sexuality and women’s sexual agency and relegate them to the universal status of victim. It also denies the reality that men are also subject to constraints imposed by poverty and by dominant social norms about masculinity. Thus, in some contexts, women’s choice of sex – without a condom – is not constrained by violence/threats, and is driven by desire rather than material goods. In the absence of violence, men do not hold complete sexual power in all circumstances.

Dominant social norms of masculinity also shape male vulnerability. For example, young men are particularly susceptible to the ‘pressure’ of dominant social norms. Research in both India and Africa has explored how the precarious and dangerous working environment of male migrant workers, together with dominant concepts of masculinity, shape sexual behaviour, especially the use of sex workers and opposition to condoms. In general, research suggests that men’s attitudes are strongly influenced by stereotypical ideas of what it is to be a ‘real man’. Men’s failure to meet these (unrealistic) stereotypes often shapes violent, dangerous and risk-taking behaviours.

Violence

In many instances, women’s sexual subordination is confirmed in and by violence. Studies in South Africa, for example, have found violence to be so endemic that men and women come to accept coercive, even violent sex as ‘normal’. Research amongst HIV positive African American women in the USA and poor HIV positive women in Canada has also found violence to be a central feature of their lives. It is this violence and sexual coercion (often combined with the limited understanding that women have of their bodies and of the mechanics of sexual intercourse) that directly affects women’s capacity to protect themselves against unwanted and unsafe sex. Young women and girls are especially at risk here. Violence against women is also deeply rooted in stereotypical gender roles, with women suffering violence for such ‘mundane’ reasons as disobedience, talking back, refusing sex or not having food ready on time. Sexual violence in situations of war and conflict also increases women vulnerability to HIV/AIDS.

Stereotypical gender roles, culture and religion

The stereotypical gender roles that underpin sexual inequality and sexual violence are confirmed and reproduced by social, cultural and religious norms. This lends an aura of ‘naturalness’ and inevitability to these roles and can make them particularly difficult to contest and change.

The invisibility of women

The public/private divide and stereotypical gender roles contribute to the invisibility of women in the AIDS epidemic, not only as people living with HIV/AIDS (see below), but also as potential victims of infection. This is not only true in regions such as S and SE Asia where there are religious taboos on public discourse on sex, but also in regions such as E Europe and Central Asia where intravenous drug-users are the predominant risk group. Here women’s sexual and economic vulnerability means that the silent movement of infection beyond this risk group (often to women) is neither publicly discussed nor acknowledged.

Multiple levels of inequality

The particular vulnerability of women to HIV infection is inextricably linked to a specific configuration of gender inequality, poverty and sexual social norms, albeit with historic and regional variations. This varied and complex interplay of economic status, social norms and the ability (or lack thereof) to negotiate sexual relationships shapes women’s vulnerability to HIV/AIDS in all communities. It also illustrates the inextricable relationship between HIV/AIDS and gender inequality at all levels, and the concomitant need to address sexual, social and economic inequalities in the fight against the AIDS pandemic

 

2.2 Gender implications of living with HIV/AIDS

2.2.1 Stigmatization and discrimination

Although HIV/AIDS stigmatizes both women and men, there are particular gender dimensions to this, similar to those that blame women for sexual violence. Comparative research has demonstrated that HIV/AIDS increases the stigmatization of women. Women are blamed as vectors of the epidemic (to partners and children), a belief reflected in colloquial descriptions of the disease as a ‘woman’s disease’ or a ‘prostitutes disease’. HIV infection in women in the context of gendered sexual norms reinforces unequal sexual stereotypes where women are labeled as ‘promiscuous’ and morally unworthy. These in turn ‘justify’ violence against women. Indeed, speaking about their HIV status has material consequences as women who are known or suspected to have HIV/AIDS are abused, abandoned and even killed. And in a deadly illustration of the madonna/whore dualism, in Africa the myth that sex with a virgin cures HIV is said to have increased incidences of rape of girls. In general, the stigmatisation of HIV and women shapes the discrimination that HIV positive women face in the public and private spheres. They are more likely to be blamed, stigmatised and even abandoned by their families and they face greater discrimination in healthcare, education and legal rights.

The particular stigmatization of women confirms again the deeply systemic roots of the AIDS pandemic, lodged in the very organisation of society. Women are more vulnerable because society is ordered in this way. Addressing this kind of discrimination and inequality through the medium of rights presents particularly difficult challenges.

      1. The gendered nature of treatment and care
      2. As with the question of prevention, a gendered approach to treatment, support and care for people living with HIV and AIDS (PLHAs) needs to be understood within the multi-layered and gendered context of people’s health and lives. Firstly, the location of HIV/AIDS in the developing world means that access to effective treatment, care and support is determined by the global economy, as well as the capacity and resources of the state, and the economic conditions of its populace. These factors structure, for example, access to expensive retroviral treatment at state expense, as well as treatment for opportunistic infections. Secondly, there is much research to demonstrate the causal links between health and other needs such as food, nutrition, sanitation, education and housing. The combination of poverty and gender mean that women’s needs are less likely to be met in these areas. This, is turn, shapes women’s health generally, and in relation to HIV in particular. Thirdly, while both poverty and HIV status creates barriers to effective treatment and care, the particular stigmatization and unequal status of women often means that they experience particular discrimination in access to and enjoyment of health care, including home-based care. Research in Zambia found female AIDS patients were less likely to be cared for at home. Further, the silence and shame that surrounds the epidemic in many countries acts as a formidable barrier to treatment and care. Finally, poverty and the absence of basic social needs, combined with stereotypical gender roles, also shapes women’s health-seeking behaviour, so that women will expend resources on the household and children, before seeking medical attention for themselves.

      3. Women as care-givers – a special category for concern
      4. The gendered division of labour in all societies means that the brunt of care for those who are sick and dying predominantly falls on women. The inadequate health services in many developing countries, and the consequent necessary reliance on home-based care, can place an intolerable burden on women. Research in Zimbabwe and Zambia has shown that care-givers are overwhelmingly women who work long hours voluntarily and often consume their own resources to carry out this role. They may be part of an organised group of care-givers; sometimes themselves infected with HIV. This often limits their ability to be economically productive. Male support tends to be resource provision to facilitate women’s care-giving role. Where financial and other support is forthcoming, it emanates from neighbours, relatives, non-government organisations and the church (supported to some extent by international charitable and donor organisations). The state plays little or no role in this.

        A gendered approach to this issue needs to address the practical needs of women engaged in care, as well as the strategic needs of breaking down the sexual division of labour to devolve some of the caring responsibilities to men, as well as the public/private divide to ensure that the state plays a greater role in facilitating home-based care.

      5. The socio-economic impact on women.

The extended family unit, the backbone of society in many developing countries will come under increased pressure from the impact of AIDS. As AIDS affects those age groups that are most economically active, these families will lose breadwinners. In the absence of comprehensive public health care, most people with AIDS will return to the care of their families and communities. As the death of breadwinners and the burden of care take their toll on the family unit and relatives, resources are drained and living standards decline, together with the family’s ability to provide the social safety net of society. A family’s ability to withstand this is directly related to its access to food, water, shelter, work and basic health and social services AIDS impacts most severely on vulnerable families, which in many countries tend to be rural and women-headed households.

Women are particularly vulnerable within this context for several reasons. Firstly, evidence in Africa and Asia reveals that if they disclose their HIV status or become ill, their relationship may break up, leaving them without access to the resources provided by their male partner. Secondly, if the husband or male partner becomes ill first (which as been the pattern of the epidemic in African countries), women divert household resources to care for them, often at expense of their own income producing work, food and school fees for the children. Children are taken out of school because of lack of funds or to o assist in care. Girls are more likely to be taken out of school first, thus damaging their life chances. Thirdly, once the spouse dies, many women living under customary or religious law have no independent legal right to resources through inheritance. Widows may be abandoned by their husband’s family (especially if known to be HIV positive) and will find it difficult to remarry to gain access to resources through another man. Many women therefore face an uncertain and impoverished future, pushed even further down the socio-economic ladder to an even more fragile economic existence (and greater vulnerability to HIV infection) such as selling food or beer or engaging in migrant labour or sex work.

Gender inequalities mean that, if social, cultural and economic costs of avoiding risk are too high, women will continue to take risks over their health and lives. Gender inequalities both fuel the spread of AIDS and exacerbate its impact on one half of the population. The challenge is to avoid this vicious downward spiral. This in turn means addressing the poverty and powerlessness that constrain people’s choices to act in their own interests and develop to their full human potential. It is here that human rights have a critical role to play.

3 WHICH HUMAN RIGHTS ADDRESS GENDER AND HIV/AIDS?

Even a brief analysis of the gendered nature of the AIDS pandemic suggests that our ability to address inequalities, especially gender inequalities, is central to our ability to address HIV/AIDS. It also alerts us to the enormity of the task of confronting an epidemic that is (a) rooted in the very structure of society (including the gendered public/private divide and the sexual division of labour); and (b) where the causes and exacerbating factors are so inextricably inter-linked with each other. This section looks at human rights implicated in prevention, treatment and care.

    1. Prevention

Prevention turns not only on awareness, but also on the ability to change sexual behaviour. This in turn depends upon the social (including religious and cultural) and economic constraints on that behaviour. As discussed above, for women and men the ability to engage in safe sexual behaviour is embedded in multiple levels of sexual, socio-cultural and economic inequality. In rights terms, these include:

These three levels of inequality and the rights that address them are all causally linked. For example, the ability to exercise sexual autonomy is linked to the extent to which social and economic rights are met. The interdependence and indivisibility of political and civil (‘first generation’) and social and economic (‘second generation’) rights was recognised in the 1993 Vienna Declaration of Human Rights. It has also been the logic underlying much of the conceptualisation and interpretation of women’s human rights in areas such as reproductive rights and rights to be free from violence. It has, thus far, been less obvious in rights strategies to address HIV/AIDS, with the exception of the right to health.

While recognising the causal links, the three categories of rights set out below are dealt with separately for purposes of clarity.

  1. Rights relating to autonomy of self/person.
  2. What are they? These are the rights that support and promote women’s actual autonomy over her ‘self’, physically, mentally and morally. They not only relate to (and are measured by) decisions and choices about reproduction and sexuality, but also relate to moral autonomy more broadly and to freedom from physical or emotional violence. This area is particularly, but not exclusively, addressed by a range of rights encompassed in the terms ‘reproductive’ and ‘sexual’ rights and the right ‘to be free from violence’. They relate directly to women’s ability to protect themselves from HIV infection in sexual relationships. The civil and political rights implicated here include rights to privacy, dignity, life, freedom and security of the person, freedom from torture and rights against discrimination.

    Where are they currently located? The historical exclusion of women’s experiences and concerns from the interpretation and implementation of human rights has meant that rights have only recently been extended to include questions of women’s autonomy. Violence against women was first recognised as a human rights problem at the 1993 World Conference on Human Rights (which led to the Declaration on the Elimination of Violence Against Women adopted by the UN General Assembly in 1993) and has subsequently been developed at the following world conferences: the 1994 ICPD, the 1995 Fourth World Conference on Women (FWCW) in Beijing. In 1992, violence against women was extensively dealt with in General Recommendation no. 19 to CEDAW. Reproductive rights were developed at the 1994 ICPD and the 1995 FWCW. The foundation for sexual rights was also laid at these two conferences, but they remain undeveloped in nature and content.

    Given the primary location of these rights within the health sector, the civil and political rights implicated in autonomy issues have not been fully explicated. For example, sexual and reproductive rights are also rights to equality, dignity, freedom and security of the person, life, information, freedom of conscience etc. Thus each time a woman is not able to negotiate safe sex, it is also a violation of many of her civil rights – this has not yet been taken up in mainstream human rights discourse.

    Although, women’s human rights relating to autonomy underpin many of the rights set out in the Convention on the Elimination of All Forms of Discrimination against Women, they are not always fully explicit here or in the key binding covenants (the CCPR and the CSECR). However, in 1992 these were made explicit in relation to violence against women. General Recommendation no. 19 lists the rights to life, freedom from torture, liberty and security of the person, equal protection of the law, equality in the family, the higheste attainable standard of health and just and favorable conditions of work. The recent General Comments Adopted by the Human Rights Committee under Article 40, paragraph 4, of the International Covenant on Civil and Political Rights also recognises the experience of women in relation to violence in the interpretation of the right to equal enjoyment of civil and political rights (article 3), including the right to life (article 6); freedom from torture and cruel, inhuman and degrading punishment (article 7); freedom from slavery (article 8); the right to liberty and security of the person (article 9); and privacy (article 17). However, these could still be extended to include the concerns of women emerging from HIV/AIDS.

    How are they currently expressed in relation to HIV/AIDS? The HIV/AIDS and Human Rights International Guidelines currently include aspects of sexual and reproductive rights in guideline 8 (Women, children and other vulnerable groups) and call for the implementation of the Cairo Programme of Action of the 1994 ICPD and the Beijing Declaration and Platform for Action of the 1995 FWCW. However, the fact that these are guidelines rather than statements of rights, and their consequent programmatic and advisory nature, means that these rights are not fully asserted within the document.

    How should these rights be expressed? Although many of the rights protecting women’s autonomy are present in international human rights, their gendered meaning is not sufficiently explicit in mainstream human rights discourse generally and in relation to HIV/AIDS in particular. Given the multiple violations of women’s rights to autonomy that are highlighted by the AIDS pandemic, it seems that as violence against women was named as a violation of human rights, so women’s lack of autonomy over their selves (in a physical and moral sense) in relation to HIV infection should be similarly named as a rights violation. It is necessary, but insufficient, to cross-refer to the current conceptualisation of reproductive rights or sexual rights as these remain contested, have largely been ‘ghettoised’ in women’s health for practical and strategic purposes, and do not necessarily yet capture the fullest meaning of women’s absence of autonomy highlighted by HIV/AIDS. If the rights of women in respect of HIV/AIDS do lie in a development of sexual rights and/or civil and political rights, this has to be done explicitly and within a broader context than health alone. Women should be able to assert a clear and general right/s to have autonomous control over their person, including their sexuality, so that decisions about sex do not endanger their life and health.

    This assertion of rights would then need to be translated into multi-sectoral obligations and activities on the part of the state and non-state actors, including but beyond the realm of health. Moreover, in so far as rights empower civil society to take action, so the explicit naming of the rights relating to HIV/AIDS and gender will facilitate the development of rights campaigns on key issues that relate specifically to HIV/AIDS. (see further in part 4).

  3. Women in relationships and the family:
  4. Women still do not enjoy equal rights within relationships, including marriage, and the family in many countries. In some, women are still subject to forced arranged marriages, often at an early age. Women may also be denied equal rights to marital property and may lack the authority or equal ability initiate or oppose divorce. Inequality within the family emerges from and is reinforced by subordinate stereotypes of women that render them vulnerable to violence and coercive sex within marriage. Such inequality, often entrenched in social (especially cultural and religious) norms, reflects and reinforces women’s powerlessness in sexual relationships and their economic dependence on men. It is also often entrenched within the law. In relation to HIV, it not only reinforces the vulnerability of monogamous married women, but it has material consequences as HIV positive women are more likely to be abused and even abandoned by their (husband’s) family.

    Where are the rights currently located? This is an area where the human rights dimensions have been clearly stated in General Recommendation no. 21 on CEDAW and more recently in the General Comments Adopted by the Human Rights Committee under Article 40, paragraph 4, of the International Covenant on Civil and Political Rights. The links between HIV vulnerability and inequality in marriage reinforces the urgent need for the effective implementation of women’s rights in terms of articles 5, 15 and 16 of CEDAW and as a person before law (article 16 of the CCPR) and in relation to marriage and the family (article 23 of the CCPR).

    How are they currently expressed in relation to HIV/AIDS?

    These rights are not made explicit in the HIV/AIDS and Human Rights Guidelines, although multi-sectoral national and local forums are required to examine ‘the role of the women in the home’.

    How should these rights be expressed?

    Given the fact that monogamous married women constitute, in many instances, a particularly vulnerable group of women, the rights of these women in relation to HIV protection could be made specific, not only in relation to legal status and equal rights within the family (in marriage, divorce, guardianship and custody of children), but also in relation to abuse, abandonment and discrimination.

  5. Cultural and religious inequality:

Many cultural and social attitudes and practices undermine and negate women's equality, and directly or indirectly increase women's vulnerability to HIV/AIDS. These vary between different countries, but are all rooted in stereotypical gender roles. In South Africa, the practice of bridewealth or lobola has been linked not only to patriarchal attitudes of ‘ownership’ of women, but also to increased violence (and hence vulnerability to HIV/AIDS). Across Africa and Asia, culture and religion are cited in defence of laws and practices that violate women’s rights, including women’s right to life.

How are they currently stated. CEDAW urges states to address social and cultural patterns of discrimination (article 5) and General Recommendation no. 21 is particularly clear about the

‘importance of culture and tradition in shaping the thinking and behaviour of women and men and the significant role that they play in restricting the exercise of basic rights by women’

More recently, the General Comments Adopted by the Human Rights Committee under Article 40, paragraph 4, of the International Covenant on Civil and Political Rights also noted that States should ensure that

‘traditional, historical, religious, or cultural attitudes are not used to justify violations of women’s rights to equality before the law and to equal enjoyment of all Covenant rights.

Important here is the extent to which cultural and religious rights and norms can in reality trump women’s rights and many countries have expressed reservations to CEDAW’s article 5. HIV/AIDS adds a new urgency to international and national efforts to promote the women rights over cultural and religious justifications.

How are they currently expressed in relation to HIV/AIDS. The HIV/AIDS and Human Rights Guidelines raise the question of the impact of religious and cultural traditions on women, but fall short of asserting the multiple rights violations to women as a result of the defensive use of culture of religion.

How should they be expressed. Women’s rights to autonomy, life and equality should not be compromised by a claim to rights based in culture or religion. All human rights have to be balanced against other rights, but no human rights approach can tolerate a situation where the assertion of cultural and religious rights can have such devastating consequences to women. This needs to be made express in relation to HIV/AIDS.

      1. Socio-Economic inequality:

As discussed above, poverty generally, but also women’s inequality within poverty and their dependence of men, are central factors in influencing their greater vulnerability to HIV infection. Sexual inequality cannot be understood in isolation from this as HIV/AIDS highlights the indivisibility and interdependence of rights such as dignity, privacy and autonomy in relation to one’s bodies and sexual lives, and the economic and social needs that constrain choices in relation to this.

Overcoming poverty and meeting women’s basic needs as rights

Women’s capacity for economic empowerment is linked to the extent to which their basic needs are met, including access to education, health-care, food security, housing and resources such as credit, ownership and inheritance. All of these relate to social and economic rights. They also relate to development, a concept that is increasingly developing a human rights emphasis.

Social and economic rights directly related to prevention

Social and economic rights are not only important to ensure that a basic threshold of needs are met, but are directly implicated in infection in a number of instances. For example, lack of access to clean water prevents an HIV positive woman from choosing formula over breast feeding and thus protecting her baby from possible HIV infection. This suggests that access to clean water is an indispensable right for prevention. A further essential right directly related to prevention is access to treatment (within the right to health-care) of HIV and to prevent HIV transmission (mother to child and after rape). While access to treatment facilitates openess about HIV/AIDS and enhances prevention efforts, access to retroviral drugs to prevent mother to child transmission and transmission through rape has a direct and significant preventive effect. Equally important here are international obligations in relation to research and development of women controlled contraception.

These rights are expressed in a variety of international rights documents. While the right to health-care has been comprehensively both by the Committee on Economic, Social and Cultural Rights and by the Committee on the Elimination of All Forms of Discrimination Against Women, a more specific focus on the interface of poverty, gender and HIV/AIDS needs to be located within a broader developmental context.

Reducing women’s economic dependence on men

Given the intersection of poverty and vulnerability, there is a need to ensure a proper rights framework to reduce the economic dependence of women on men. There are a variety of economic and work related rights that are significant here, including the following:

3.2 Treatment, care and support for women living with HIV/AIDS

Women’s economic inequality and their dependence of men, their gender role as primary care-taker in the family (and for the sick in the community) and social norms about a ‘good woman’ increase the burdens of living with HIV or AIDS or caring for AIDS patients. Access to basic social and economic rights/needs, including the right to health-care, is essential not only to the health and well-being of women living with HIV or AIDS, but also for their families and the community as a whole. The AIDS pandemic merely reinforces the developmental argument that women constitute the lynchpin of communities and a developmental investment in women in necessary to maintain and improve the well-being of the entire community. Despite this, the broad scope of social and economic rights, and their relationship to poverty and development, has received less attention in relation to HIV/AIDS. They are absent in the HIV/AIDS and Human Rights Guidelines (with the exception of public health laws). More recently, however, the right to health has become central and obvious fulcrum in this discussion and has received comprehensive attention as referred to above.

The right to health is central. This has been the source of much attention both within the area of women’s health (in the ICPD and Beijing reviews), by the Committee on the Elimination of All Forms of Discrimination Against (General Recommendation no. 24) Women and by the Committee on Economic, Social and Cultural Rights (General Comment 14 of 2000). The comprehensive nature of these documents means that little space will be devoted to this right here. However, given that most AIDS patients in most developing countries, with collapsing health systems, can only expect home based care – the health rights of these patients (vis a vis the state and private providers) and well as the rights of care-givers are an area for development.

The place of other social and economic rights. The health emphasis within HIV/AIDS is necessary, but may sometimes have had the unintended consequences of shifting attention from a broader developmental perspective to the AIDS epidemic. Although the causal links to rights such as water, sanitation and nutrition are clearly relevant to health, a more developmental rights perspective should emphasise their importance not only in relation to health but to the task of reducing poverty and empowering people to deal with HIV/AIDS (prevention and treatment). Indeed, this seems to be the approach emerging in the recent UNDP report on Poverty.

Briefly, the following social and economic rights relate to both health and developmental aspects of HIV/AIDS:

Access to nutrition, clean water and sanitation. Clean water and sanitation and adequate nutrition are necessary for PLWAs to maintain their health status and for effective home-based care. They also address poverty.

Access to social security. This is critical for support for sick and those who unable to work, as well as assisting in home based care. The AIDS epidemic is also straining the extended family and women to breaking point and social security measures should be introduced to alleviate this and prevent even greater poverty.

Access to Housing. Shelter and housing for women who lose their housing upon becoming sick (because it is tied to work, often her husband’s work, or her husband’s family throws her out of her home) is a critical need.

Access to education. Girl children have often been removed from school to carry out household work or care for the sick. The AIDS epidemic has increased this trend with girls being taken out of school to help care for sick PLWAs. This has critical consequences for development in view of the positive returns on an investment in education of girls.

Access to resources through inheritance In Africa, women’s access to resources through inheritance is critical and the removal of legal barriers to this should be a priority. In customary law, women have no right to inherit from their husbands and fathers but are entitled to maintenance from the (male) heir. However, the customary protection of widows and children via such maintenance obligations of the heir has largely broken down and many women and their families are left destitute after the death of a father or husband. This has devastating consequences for women living with HIV/AIDS or caring for those who are sick. In addition, the economic vulnerability of widows makes them particularly susceptible to sexual demands by male relatives, hence increasing their vulnerability to HIV.

Rights for Women as Care-givers

As seen above, women overwhelmingly bear the burden of home based care. Given the huge dependence of people in developing countries on such care, the rights of these care-providers are critical to both provider and patient.

Research has demonstrated that care-givers have a range of practical needs to enable them to carry out their tasks, especially for resources to secure food and equipment and for training. In addition, to this welfare grants would also assist in this role. The fact that these women carry out a function that is the responsibility of the state, but which the state is unable to meet, strengthen their claim to obtain these from the state as a right.

A second critical need is to ensure that care-giving is structured in such a way as to prevent girls being taken out of school. This entails support for extending care-giving services among adults and in supplementing school fees for children.

However, these women and girls also have a strategic need – which is to include men in care giving roles. The responsibilities of men and programmes to develop these responsibilities should be a key part of any response.

4 SOME RECOMMENDATIONS FOR ACTION BY INTERNATIONAL AGENCIES, STATES, CIVIL SOCIETY.

The gender dimensions of a human rights approach to HIV/AIDS reveal that vulnerability to HIV/AIDS is underpinned by multiple levels of gender inequality. Indeed, the AIDS pandemic represents the ongoing failure of the community of nations to promote and protect women’s human rights and advance gender equality, as much as it highlights the failure to address poverty and global inequalities.

As described above, the AIDS pandemic implicates a broad range of political, civil, social and economic rights, whose ongoing violation heightens the vulnerability of disadvantaged groups, especially women and poor people, to HIV/AIDS. Many of the key rights issues that relate to gender and HIV/AIDS are being addressed in a variety of international documents, agencies and activities – albeit within different sectors such as ‘women’ or ‘development’ or ‘health’. Some of these have yet to reflect the experience and concerns of women, others have been developed within the women’s sector and are beginning to influence mainstream human rights discourse/interpretations. While many of the advances in women’s human rights are relevant to a human rights approach to gender and HIV/AIDS – the linkages between gender, human rights and HIV/AIDS need to be made tighter and more explicit. In particular, there should be specific named violations and entitlements in relation to women’s powerlessness or absence of autonomy and the social and economic context of poverty and under-development that exacerbates this, together with recommendations that fit the needs and concerns of women (and men) in the epidemic. This should be done in a way that moves away from the current tendency to emphasise health as the sole starting point or context for women’s rights in this area. Given the historic development of reproductive and sexual rights, and more recently HIV/AIDS issues in women’s health, most of the best international material is found here. However, a more holistic approach should encompass a broad range of individual, social and economic rights across all sectors to ensure that states recognize the obligation to address poverty and broad developmental issues as part of the response to HIV/AIDS. It is therefore important to draw together all the diverse threads on inequality that underpin vulnerability to being infected and affected by HIV/AIDS into a ‘single fabric of rights that are interdependent and indivisible’. The balance of the paper considers the nature and content of such an approach, as well as a series of specific recommendations.

A comprehensive and broad-based statement of human rights, gender and HIV/AIDS seems necessary. This will not only to provide a focal point for co-ordinated international and national responses to the epidemic, but perhaps more importantly, the focus on women will force the key issues of sexuality and poverty to the centre of human rights responses to the epidemic. The only comprehensive international statement, the HIV/AIDS and Human Rights International Guidelines, remains limited in its ability to address sexuality and poverty in so far as it places excessive responsibility on government and largely ignores other centres of power, is overly reliant on the law and legal frameworks, reveals and reinforces a division between political and civil and social and economic rights, and prioritises individual rather than social rights.

This statement should identify sexual inequality as the fulcrum of women’s vulnerability. It should assert women’s rights to autonomy, including the right to enjoy sex without threat to her life of health. The international controversies on sexual rights are well-known and sexual rights remain undeveloped. However HIV/AIDS leaves little choice other than to accept the rights violations highlighted by women’s vulnerability. These are firstly, violations to women’s persons and bodies. HIV/AIDS demands that we assert women’s rights in respect of autonomy, sexuality, choice and violence – together with the concomitant responsibilities of state and non state actors, particularly men.

Particular challenges emerge from this as the norms and practices that shape this inequality are entrenched in those structures of society (especially in the public/private divide and the sexual division of labour). These remain remarkably resistant to change and even sustain the frameworks within which international and national human rights have been located. A human rights approach to gender and HIV/AIDS has to insist that accountability expands to the private sphere, and that the state acts to ensure this. It should also state that public silences about HIV/AIDS reinforces private inequalities, and by protecting current relationships of power and sexuality, these silences violate women’s human rights. It needs to emphasize the role of men (which is increasingly being recognized) and the conceptualization of rights as including responsibilities. It also means that cultural and religious rights must give way to women’s equality rights, especially in those countries where these constitute significant centres of non-state power.

Experience tells us that addressing structurally entrenched sexual inequality is a long term and difficult task. HIV/AIDS merely provides yet another window on problems that are well-known within the women’s movement. What is important however, is to ensure that the AIDS pandemic generates a greater congruence between across sectors and agencies (at international and national levels) and a greater commitment of resources, skills and energy to address these often intractable issues.

Poverty is the second key factor in vulnerability to HIV/AIDS. Here social and economic rights have to be given equal weight to political and civil rights in respect of HIV/AIDS. It is only with effective implementation of social and economic rights that the gap between international rhetoric and practice on the ground can be met. While it can be recognised that countries face severe resource constraints in addressing social and economic needs, it is important to list the basic threshold needs/rights that shape women’s vulnerability, together with identifying groups that are most vulnerable and thus most in need. A clear statement will enhance the capacity of civil society (and the international community) to hold governments accountable to these rights. However, the challenge of addressing poverty also requires much more complex and long term strategies.

If rights are not fully conceptualized, they cannot be effectively implemented. There has to be consensus about the meaning of rights amongst those who make and implement policy, as well as the broader community if international human rights are to have any relevance for day to day life. While these battles of meaning will doubtless be fought out in national contexts, the international standards established in human rights are important. There have to be clear messages on (i) women’s autonomy and sexual equality, (ii) the fact that cultural and religious rights cannot ‘trump’ this, and (iii) the developmental context of addressing HIV/AIDS.

Pre-conditions for effective human rights approaches to HIV/AIDS and gender

Citations generally focussed on the obligation to ensure women receive information, education and appropriate services to reduce their risk of infection. [There were] no comments that … directed governments to ensure that the entire range of HIV/AIDS activities were gender sensitive or to ensure that the gendered social, economic and political barriers were removed.

Rights rhetoric provides a mechanism for analyzing and renaming ‘problems’ as ‘violations’, something that needn’t and shouldn’t be tolerated… In their demands for explanations and accountability, human rights expose the hidden priorities and structures behind violations. Thus demystification of rights, both in terms of their social and economic content, and their applicability to non-state actors, constitutes a critical step towards challenging the conditions that create and tolerate poverty.

Policies and programmes relating to prevention implicate human rights at three inter-related levels: rights relating to individual autonomy, social and cultural inequality and economic inequality. What is set out below is not comprehensive, and should be understood within the broader points listed above.

International

 

National – state responsibilities

Civil society

International

National

Non-state actors

Civil society

The ability of developing countries to address poverty is circumscribed by issues of global macro-economic policies, and by weak or absent mechanisms of democratic accountability, limited state capacity and poor state resources. As a result in the developing world, there is a huge gap between the rhetoric of international human rights and the reality of people’s lives, both in terms of understanding of rights concepts and in terms of the material impact.

International

National

In relation to the treatment, care and support, the right to health should be supported by a broad range of political, social and economic rights within the overall context of development.

International

National

International

National

Civil society

International

National

Civil Society