HIV/AIDS Exposes Gender Injustice
Ann Boyd, Hood College, USA
Twenty-five years after the discovery of the human immunodeficiency virus (HIV) that causes Acquired Immunodeficiency Syndrome (AIDS) science has an accurate pathobiology of the virus. Having infected 65 million persons since isolation in 1985, HIV/AIDS has caused the deaths of 25 million while 40 million live with HIV. The United Nations (UNAIDS) reports the epidemic is slowing globally, but new infections continue disproportionately among poor women exposing the gender inequality perpetuated by cultural, legal, medical, and social practices (1).
Testing is accurate and yet knowing if one is infected too often leads to social stigma, loss of job, and rejection by family. Knowing also raises questions about who to tell, and how to deal with the risk of infecting others. For privileged persons with access to therapy, HIV infection can be tamed to a chronic disease, but for persons living in poverty being HIV-positive means AIDS is your path to death. The pandemic reveals disproportionate severity in Sub-Saharan Africa dwarfing the number of infections elsewhere in the world (2).
AIDS, like poverty, has a disproportionate impact on women and girls. Of the 1.2 billion people living on less than $1 a day, 70% are women (3). Women own a small percentage of the world’s land and yet produce two-thirds of the food in the developing world. Women are the primary caretakers of children, orphans, and the sick. Women represent 60% of the HIV infected persons in Sub-Saharan Africa and half of all HIV infected persons globally (1). Being economically dependent on males, first the father and then the husband, women have too little choice or control over their sexual experience. Widows whose husbands die of AIDS suffer discrimination, abandonment, fail to inherit the land or property of the household, and are more at risk of violence. Driven from their physical home, devoid of livelihood and possessions, women are forced into risky behaviors to provide basic human needs for themselves and their children.
An African American woman is more likely to die of AIDS than any other cause if she is between the age of 15 and 49 (4). Women typically acquire the virus through heterosexual intercourse in monogamous relationships. Failure to diagnose and treat sexually transmitted diseases increases the risk of HIV infection. Prevention efforts must increase as must more comprehensive access to treatment and care. To achieve these goals, three interventions are recommended: recognizing and promoting the human rights of women, reducing violence against women, and ensuring education for women.
Like a harsh and unforgiving light, the AIDS pandemic has exposed ugly fault lines of disparity and injustice between and within societies, but it also has clarified where future efforts should be focused. Manmade inequalities create a wall separating AIDS patients in low-income circumstances from treatment. Decisions made in boardrooms populated by males with privileged social and economic position ignore the gender relations in impoverished households. The wall must be dismantled allowing a sea change in global politics and ethics if equitable treatment of women and men is to stem the tide of the HIV pandemic (5).
The intent of this paper is to revisit the HIV pandemic through the experiences of poor women, using cases from the United States and Kenya. (The names used in the case studies are fictional to protect the identity of real women whose situation makes the cases relevant and real). These two locations provide contrasts of overall health, wealth, legal and cultural practice, and yet the social and economic vulnerability for a black woman in either location is alarmingly similar. The new trends in HIV infection rates among poor women call for a new approach to ethical reflection. If we continue down the road of justification by mere words with ambiguous meaning, the history of HIV/AIDS is poised to write another chapter in the discrimination against women.
HUMAN RIGHTS for WOMEN:
CASE: Mary is a woman in Kenya, whose husband died of AIDS. Mary has two children and all three are HIV-positive. It was at the birth of her second child that Mary discovered she was HIV-positive. Her husband was very sick at the time. When she returned home she urged him to go for testing but he refused. When his family came to visit, he told them she was HIV-positive but not about himself. When he died, they came and drove Mary and the children out of their home with only the clothes on their backs. With no place to live, no land to farm, and no family or community to help, the small band of three made their way to the nearest city, begging for food, vulnerable to abuse, and prime for selling the only commodity left, sex.
UNAIDS Global Coalition on Women and AIDS correctly stresses the importance of protecting the rights of women to own land, inherit property, and acquire education and skills that allow her to be economically independent. HIV prevention can take the form of economic security relieving women and girls from vulnerability to unsafe sex, and domestic violence. The Young Widows Advancement Program (YWAP) provides HIV positive widows help in combating social stigma and provides legal assistance to empower widows to protect the family property, inheritance and other human rights. Although statutory laws prohibit gender discrimination, local customs and failure of government to enforce laws result in women being barred from inheriting property and being stripped of their possessions by relatives.
CASE: Martha lives in the United States, is twenty-one and is HIV-positive. Martha married at the age of 17, has one child who was diagnosed with HIV at birth and subsequently learned she also was positive and was infected by her husband. When Martha confronted her husband, he simply left her and the child. Lacking a high school degree, Martha works a minimum wage job full time for an annual income of just over $10,000, which is $6000 below the poverty level in the USA. Martha is qualified for Medicaid, which provides ART for her and her child. Because she is HIV-positive, Martha’s parents refuse contact with her and refuse to help care for the child. Legally the father owes child support but he died before the court could locate him.
Human Rights must include civic, social and economic realities. Only one out of six persons who need ART actually receives it. The estimated 8.9 billion dollars devoted to AIDS for 2006 falls short of the 14.6 billion needed, leaving open the question, “who will receive treatment?” Unfortunately, rationing strategies reflect the injustice of local and international policies (5). Economic rights are no less important than civic rights. Consider the following example of the good that can be achieved through small increments of progress towards social justice.
Jane works on a tea plantation in southern Kenya. The owners supply housing and pay workers by the kilogram of tea picked. Jane picks 7 kg less tea per day than her healthy counterparts and earns 18% less. The Walter Read Project in collaboration with Kenyan MOH offers testing, counseling and ART on the plantation. Receiving ART when her CD4 count is low, Jane is able to work at her previous level and recover her income earning capacity. The nurse in the lab, a Kenyan native, reported the dramatic effect: In her words, “despair turned to hope.”
In Kenya 253,831 persons qualify for treatment but only 38,000 (16%) receive ART (2). Decisions about allocation are influenced by transnational decisions and by distribution choices within the country. Regions without clinics, roads, and supply networks are less likely to receive testing or therapy. Polices such as “abstinence, be faithful and condoms” are statements of privilege, blind to the reality of life for women living in poverty. Where HIV information campaigns, voluntary counseling and testing programs have gradually slowed infection rates, access to antiretroviral treatment is slowly improving. In part this is due to infrastructure improvements that have made clinics more accessible in rural regions. At the same time, Kenya is struggling to raise awareness that HIV infection occurs within marriage and long-term relationships, decrease violence against women, and to protect economic and human rights of women (6).
Convention to End Discrimination against Women (CEDAW) supported by money from the United Nations Development Fund for Women (UNIFEM) promotes women’s human rights, urges political participation by women in setting policies and advocates for economic security. CEDAW posits 8 goals to address and overcome sexual stereotyping, physical vulnerability and exploitation of women (7). Elimination of discrimination against women will require that statistics about HIV infection, prevention, and treatment be reported according to gender in order to expose gender injustice masked by conflated reporting practices. Gender related abuses are a significant part of the complex socioeconomic web. When gender injustice is considered simply a matter of culture or private exception, it fails to be seen as a breach of human rights (7).
CASE: Joan is ten years old and lives in southeastern Kenya. Her father accepted a bride price from a 40-year-old man. Joan will be his fourth wife. Unable to carry wood and water at the pace of the older wives, Joan is frequently beaten for being late and inadequate. When Joan fell further behind in her duties, the violence increased.
The November 25, 2005 issue of the journal Science reported the increase in violence against women throughout the world (8). The Millennium Development Goals commit the 191 member states of the UN to sustainable human development and recognize that equal rights and opportunities for women and men are critical for social and economic progress (Resolution A/55/2, the United Nations Millennium Declaration United Nations, New York, 8 Sept 2000). Despite international declarations calling for an end to violence against women, policy makers in local and national offices see it as merely a social problem. A WHO sponsored global study indicates that violence against women occurs at the horrendous frequency of one in three women! [Based on thousands of interviews with women aged 15-49 in developed and developing countries (Bangladesh, Brazil, Ethiopia, Japan, Peru, Namibia, Samoa, Serbia, Montenegro, Thailand, United Republic of Tanzania). In thirteen of 15 sites participating in the survey, 33 to 75% of women reported having been physically abused or sexually assaulted at least once since the age of 15 with the majority of such violence perpetrated by a domestic partner (8).]
The most disturbing part of the report was the revelation that “50-90% of women think it is acceptable for a man to beat his wife for one or more of the following circumstances: if she disobeys her husband, refuses him sex, does not complete the housework on time, asks about other women, is unfaithful, or is suspected of infidelity. The prevalence of partner violence and women’s belief that such violence is normal or justified is one of the most salient finds of the WHO study” (8). Social and cultural systems must resist the impression that violence can be justified; there are no acceptable reasons to beat a partner.
Successful strategies for overcoming violence against women require a change in social custom condoning violence. Change can be accomplished only when young people are given skills for healthy relationships and women’s access to education and economic empowerment are taken seriously. Attitudes will have to change for the status of women and the dignity of their partners to improve.
CASE: Joyce lives in the USA, is thirty-five, has three children, and a high school diploma. Her husband is a successful businessman but he drinks too much and becomes abusive. She has been to the women’s shelter three times in the last five years but when she recovers from the beatings, she returns home, afraid to leave the children with him and unable to secure income enough to support herself and her children. Counselors at the abuse shelter have suggested protective custody for the children, legal proceedings against the husband, and other means to help Joyce leave this abusive relationship. Joyce blames herself for the abuse and makes excuses for him.
Perhaps because women represent 70% of the individuals living in poverty, they experience a disproportionate amount of violence. It may be the case that men also are victims of violence perpetrated by social and economic vulnerability. The inequality trap of social and economic inequality encircles men and women pointing to the need for more focused work on individual human rights (9, 10).
Education for women and girls:
CASE: Alice is nine years of age and lives in a small village in rural Kenya. Her father became sick and her mother cared for him until he died, then she too became very sick, and Alice dropped out of school to care for her mother. The two brothers, age 4 and 6 remain in school but fees for books and uniforms are beyond the reach of the family. Alice has to find some way to make money if her family is to survive. The only way she can find to provide food for the boys is to have sex with anyone who will pay for it.
It is sadly ironic that HIV/AIDS increases the number of children deprived of education, as it is the very thing needed to acquire safety from HIV infection. AIDS affected households and communities impose economic and social burdens, disproportionately shouldered by girls. To care for a parent who is sick and dying, children drop out of school. When one or both parents die, the children are faced with economic demands without the benefit of knowledge, skills, and opportunities gained from education. Education for women and girls is a fundamental requirement for a productive life and economic independence (11,12).
UNAIDS has shown that educating girls dramatically lowers their vulnerability to HIV. Attending primary school reduces the risk of HIV infection. Each year of education empowers girls, equipping them to make decisions about their sexual experiences and improves their earning potential. Supporting the completion of primary education for young girls could reduce new HIV infections by as much as 7 million cases. When orphans have no source of income and schools require payment for uniforms, books and tests education is beyond their reach. Lowering or waiving school fees puts education in reach for many children as it did in Kenya where enrollment increased 22% with abolished fees (13).
CASE: Anita lives in the US and is in the 8th grade at a city school. Anita’s mother has AIDS and can no longer work. Her father left the family years ago, and left no forwarding address or information. Anita tries to care for her mother and go to school, but her grades are failing and she cannot concentrate because she is fearful that her mother will die and leave her with no family, home, or means of support. She talks frequently to an older man in the apartment building who promises to take care of her when her mother dies. Anita knows that he has many female companions who seem to have plenty to eat and fancy clothes. Anita does not know what is required of these women for such support. Unless Anita finds alternative support, she too will become one of “his girls,” a polite euphemism for prostitute.
In the USA, approximately 1 million persons are living with HIV, but one third of them do not know they are infected. Testing is available but not mandated. Patients who know they are HIV-positive have access to treatment, but for 43 million citizens of the US who lack medical insurance and make too much money to qualify for Medicaid, therapy may be hard to access. In the developing world only 1 in 5 HIV infected persons are currently receiving treatment (14).
A Hood College honors student, Sarah Schefers (15), conducted a survey of what students know about HIV transmission, testing, treatment and behavioral practices. More than 66% of the students were aware of transmission risks, but failed to protect against exposure in more than 50% of sexual engagements. Schefers paper entitled, “Educating the next generation about HIV/AIDS – where have we gone wrong?” shows nearly two-thirds of the students could not correctly answer specific questions about HIV transmission, risky choices in behavior, diagnosis (testing), and treatment. The focus groups included men and women, 66% Caucasian, 34% minority. One-third of the students answered very few questions correctly, one third answered correctly questions about HIV transmission but could not answer questions about diagnosis or treatment, and one third answered all questions correctly. Overall, students know how HIV is spread but have little or no information/knowledge about testing, symptoms, and treatment. The primary source of students’ information was TV commercials.
CDC reported in 2003 that in 33 states within the US, 211 children under the age of 14 were diagnosed with HIV along with 3,847 persons ages 15-24. A middle school principal interviewed reported: “for the girls most of their partners are older men. It is a recent trend, older men wanting these younger girls --- they think younger girls are not diseased [HIV positive]”. Girls from lower socioeconomic status and broken homes looking for financial security and love as young as 5th and 6th grade become prey to such predators. When the girls contract STDs or become pregnant, the men abandon them (4). Better sex education is needed in school at earlier stages than is the current practice.
Schefers concludes that people in the US are still contracting HIV because they don’t believe they are vulnerable to the disease. They live with the myth of “risk groups” that they “don’t belong to,” or think they can recognize a person who is infected. Some teens simply believe they are invincible. The survey, limited as it is to college students, suggests preventive strategies will require more specific education approaches that break through willful ignorance and the phobia of talking about sex (15).
A microbicide is a substance that can significantly reduce transmission of HIV and/or viral, bacterial, fungal or protozoan sexually transmitted pathogens when applied topically to genital mucosal surfaces. Microbicides can be contraceptive or noncontraceptive. Acting through one or more mechanisms, microbicides are designed to kill or inactivate pathogens, create a physical barrier to prevent infection, inhibit replication and boost natural defenses. This exciting and putatively helpful scientific research is currently evaluating 15 candidate microbicides in clinical trials, five of which have entered phase III (16-19).
Perhaps the development of microbicides is progress to the extent that women would have more control over sexual exposure to infectious agents. Developing a safe, effective and affordable microbicide could contribute to several important goals. It could provide an intervention that places control over reproduction and sexual risk of HIV infection in the hands of women. It could reduce HIV transmission to women and thus to their children. Five microbicides have reached phase II or III in clinical trials and anticipate having at least one effective agent available by 2010, the same year that ART is targeted to be available for all who need it. If an effective microbicide offered 40% protection, millions fewer HIV infections would occur (20). Current research with microbicides requires shorter follow up than vaccine trials, tests women for HIV more frequently, and may discover other gynecological conditions for which local treatment may be unavailable. If women are to bear the burden of HIV infection and become the ones expected to prevent transmission by use of agents e.g. microbicides, then treatment for any condition acquired during participation in research ought to be the standard of care. Of course this takes us to the whole abstract reasoning of whose standard of care is to be imposed and the risk of reducing research progress – another example of rational justification using minimalist ethical principles.
The development and testing of microbicides follow guidelines set for vaccine trials and occur in similar geographic and political contexts. Investors are calculating the global market for microbicides before we know the safety or efficacy of their use. Economic calculus that focuses on profit as the sole criterion for development of drugs or any other medical intervention is myopic. The forecast for microbicide market is 70.5 million women in the developing world and 16.5 million women in the developed world. Surveys show that in the US 25% of women expressed an interest whereas in Kenya interest was 60%. Pricing is expected to begin at 5x the price of a condom. The US market for condoms is $295 million annually. Microbicides are not likely to be more effective than condoms but if or until women gain control of sexual experiences, microbicides may provide interim relief. Funding for birth control pills faced similar economic and political oppression in the 1950’s until two women, Margaret Sanger and Katharine McCormick, set events in motion that led to the development of the contraceptive pill. McCormick invested $ 2 million (equivalent to 30 million today) in 1951-1959 to fund research that produced a contraceptive (20, 21).
Development, testing, and marketing are dominant economic and scientific strategies lacking in the humane sensitivity regarding social and economic impoverishment of women. “Claiming to add a weapon” to the AIDS arsenal uses dominant language that risks making women the victim of responsibility in social systems of oppression. Until women’s rights are seen as human rights and social and political justice is achieved for all persons, microbicides may offer women some better protection, a small and potentially positive step toward greater equality.
Feminist Critique:
Women are victims of structural systems of power and structural weaknesses within and among countries as a consequence of patriarchal dominance in political and social custom. Human rights fail in such systems of oppressive inequality. Unless rights pertain to all human beings, human rights discourse cannot correct the injustices exposed by HIV/AIDS.
Corrective action requires that the civil rights of women must expose violence against women as a breach of human rights. Economic rights of women must protect women’s rights to own property, inherit property, and equal access to healthcare. Legal enforcement of women’s rights according to the goals of CEDAW as ratified by the 104 countries and the UN General Assembly demand a change in social and political discrimination against women and call for greater inclusion of women in policy setting bodies. Women need food, water, and freedom to live lives of dignity, free from domination and violence (22).
As things now stand, women are not independent equals but dependent nonequals. Seeing and facing the social inequality between men and women in the world is the first step in crafting a system of true justice. Failing to recognize the sources and making excuses for injustice masks recognition of possible routes to achieving justice. It is not sufficient or desirable for women to seek mere equality with men in the sense of becoming like men. The self-defined sense of behaviors, values and virtues of the powerful, mostly men, have led to systems of grave injustice. Women seeking parity with such men does little to improve the status quo, for men also subordinate other men in systems of classism, racism, in layers of self-serving egocentrism (23,24).
Alternatively a diversity approach to gender injustice calls for a reversal of the oppressions and discriminations against women by breaking down the walls of domination on the basis of race, class, religion, sexual preference, economics, or nationality. The equality principle, with a humane imperative, tolerates diversity by allowing social and economic difference. While women claim equality with men, both men and women are victims of social and economic subordination. We need a better vision of equality, one that grants full dignity status to human beings regardless of attributes of differentiation. Rather than the traditional focus on independent rational agents, we need to imagine mutually interdependent communities that see communal health from a holistic perspective (25).
It is time to relinquish the rhetoric of autonomy for a closer look at the reality of global injustice, discrimination against women, and begin to see the gross consequences of failing to respect the humanity, the human rights, and the dignity of every person. Justice that allots to each a fair share leads us to craft distributive strategies for resources, but each person within the commons will not require the same amount of care. Since some will contribute more than others and some with withdraw more than others, limits cannot be defined on purely economic grounds or on the differences between nations. Humanitarian posturing for elimination of suffering must acknowledge the disproportionate burden of HIV infection borne by women.
The Declaration of Human Rights of 1948 offers an ideal of human commonality. If human rights is to be the lingua franca then both women and men must count as human beings. While differences of culture conditioned norms change with time and place, common necessities of human life raise the possibility of common, mutual, interdependence and hence the possibility of social justice. Relativists are right to claim that notions of equality, mutuality and equity apply within a cultural context and its chosen polity, but often neglect to recognize the universal assertions of human rights. If there are essential and basic elements in the human experience that can be defined as common, then justice can take the shape of supporting and insuring the viability of all persons. Justice corrects injustice, liberates the poor and oppressed, takes the side of the vulnerable and protects the rights of the privileged as well as the marginalized. Human rights claim the goal of sustaining life by ensuring economic, social, political and personal freedoms. Respect for freedom of conscience respects plurality of values but does not sanction discrimination against one group.
The common ground of human existence is the individual relationship. We live in communities in which all persons are equal in human dignity but diverse in terms of talents and opportunities. From family to tribe to nation, the relational character of persons is held in all anthropological and historical accounts of human life. Human rights are not singular or individualistic but relational. From the relational perspective, human rights are reminders of our duty to our neighbor. Rights language is good when it promotes the dignity of persons but deficient if it rests on the individual good over community flourishing. We need a way to resolve the conflicting claims and the authority to protect and enforce social rights in circumstances that limit resources and where distribution of resources is unequal and unjust. A person is not a mere means, rather she is an end and morally responsible for fulfilling her destiny. Human rights provide the freedom and opportunity for each person to achieve her destiny (26).
Making choices between lesser and greater evils when resources are limited and perfect justice is not within reach calls for systematic and progressive increments of progress. Justice that is restricted to a redistribution of goods has failed to achieve the desired goal as currently practiced. The feminization of AIDS is a microphone for the voice of the oppressed and stands as a testimony to the failure of current redistribution schemes. Justice takes injustice seriously and makes a commitment to mutual responsibility in which the entire human community experiences a restoration of the fundamental relational nature of all women and men.
An Inspiring Example:
In closing I have searched for a model in our world that could stand as an example of how we might proceed. The one I have chosen is the Peace and Reconciliation work in South Africa. Apartheid was a horrific system of powerful oppression and genocide. When the system failed, rather than reverse the domination, those newly in power chose reconciliation as a higher road to peace and social justice. Being able to move forward meant dealing honestly with the sordid past as philosopher George Santagyana taught, “Those who forget the past are doomed to repeat it.” National amnesia would not suffice, and the Nuremberg model of retribution seemed only to reverse power and dominance. The election of Nelson Mandela, April 27, 1994, was a metamorphosis, the prisoner became President and formed the Truth and Reconciliation Commission to deal with the past. Amnesty was offered if the guilty simply confessed their wrong doing. The basis of the choice is Ubuntu, the essence of being human. The term encompasses the English connotations of generosity, caring, compassion. The human being is human because she or he belongs, participates, and shares life with other human beings. Social harmony depends on mutual respect expressed in the African idiom: “a person is a person through other persons.”
Working for reconciliation held forth the vision that members of the human family are bound together in a delicate network of interdependence. The Truth and Reconciliation Commission began the process without expecting to achieve social equality immediately. The project was national in scope seeking to include every South African, to learn the language and culture of others, learning to admit wrong and apologize, and working for a new culture that respects human rights. Here is an excerpt from the interim Constitution that served as a bridge to democracy and a foundation for the work of the Truth and Reconciliation Commission:
“This Constitution provides a historic bridge between the past of a deeply divided society characterized by strife, conflict, untold suffering and injustice, and a future founded on the recognition of human rights, democracy and peaceful co-existence and development opportunities for all South Africans, irrespective of color, race, class, belief, or sex. . . The adoption of this Constitution lays the secure foundation for the people of South Africa to transcend the divisions and strife of the past, which generated gross violations of human rights, the transgression of humanitarian principles in violent conflicts and a legacy of hatred, fear, guilt, and revenge. These can now be addressed on the basis that there is a need for understanding but not for vengeance, a need for reparation but not for retaliation, a need for ubuntu but not for victimization.” (27)
The process in South Africa offers us the hope that the dignity of every human being can be respected by taking human rights seriously. The ideal of the common good is difficult in a pluralistic contemporary society driven by economic and political motives. The common good may be a pluralistic ensemble, but supporting the dignity and human rights of every woman and man requires a new vision of our relational nature as persons.
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