LESSON 22

 

Eliminating Violence, Stigma and Discrimination

 

 

 

After completing this lesson, you should be able to

 

 

Stigma and Discrimination
 

Two weeks ago, some Management staff of an establishment in Abuja were given self-test kits for HIV. The Director in charge of the project requested those who got the kits to inform him of their HIV status. Nobody did. The fear of stigma or discrimination would appear to account for such lack of disclosure. People around the world living with HIV and AIDS face obstacles on a daily basis, stigma and discrimination remain the two most often encountered.  Comments commonly heard include:  “If I shake your hand, I’ll catch it.” “I can’t work with you, you’ll infect me.” Fear of HIV/AIDS has had a devastating effect on those infected and affected. Just the threat of discrimination prevents many people from being tested, seeking much needed treatment for AIDS, and disclosing their HIV status.  Meanwhile, individuals with, or suspected of having, HIV have been turned away from health care facilities, denied housing and employment, rejected by their friends and families, turned down for insurance coverage or refused entry into foreign countries. There have been cases where people with HIV/AIDS have been evicted from homes by their families, have been abandoned by their spouses or partners, and have suffered physical violence and even murder.  The stigma attached to HIV and AIDS also may extend beyond those with the disease into their next generation, placing an added emotional burden on children who may also be trying to cope with the death of their parents from complications related to AIDS.  It is only by confronting stigma and discrimination can a complete fight against HIV/AIDS be won. Let us now examine three views on the subject.

 

Domestic Violence and HIV Infection in Uganda
Human Rights Dialogue 2.10 (Fall 2003): "Violence Against Women"

Lisa W. Karanja

 

 

Jacqueline is a thirty-two-year-old Ugandan woman who tested HIV-positive after her husband died of AIDS. Before he died, he routinely raped and beat her, and refused to use a condom during sex. Her four children are infected with HIV, as is her co-wife. The similar experiences of many Ugandan women illustrate the ways in which domestic violence can play a critical role in rendering women vulnerable to HIV infection. As a result of violence or a fear of violence, Ugandan women are unable to protect themselves from infection and to access HIV/AIDS services. Although Uganda has ratified international and regional human rights treaties providing for women’s rights to protection against violence and women’s rights to health, the unchecked domestic violence and the lack of access for women to HIV/AIDS services are clear indications that the government is failing to meet its responsibilities.
 

In addition to women’s greater physiological susceptibility, social, cultural, and legal forms of discrimination compound their vulnerability to HIV. Domestic violence, already a leading cause of female injury, deprives women of bodily integrity by eliminating their ability to consent to sex, negotiate safer sex, and determine the number and spacing of their children. In many cases, the threat of abandonment or eviction constrains economically dependent women to remain in abusive relationships, thereby exacerbating their vulnerability to HIV infection. One HIV-positive woman said, “He used to force me to have sex with him. He would beat and slap me when I refused. . . . The very first time I asked my husband to use a condom because I didn’t want to give birth he said no. He raped me and I got pregnant. I’m still with him because I don’t have a cent. He at least pays the rent.”
 

Ugandan women confront a male-dominated power structure that upholds and entrenches male authority in the home. In 2002-03, as a researcher for a Human Rights Watch report on the correlation between domestic violence and women’s vulnerability to HIV infection, I talked with many women who viewed domestic violence as a natural by-product of marriage. Customs such as the payment of “bride price,” whereby men essentially purchase their wives’ sexual favors and reproductive capacity, underscore men’s entitlement to dictate the terms of sex. Practices such as widow inheritance by a man of his brother’s widow can expose women to unprotected and unwanted sex with HIV-positive partners. When women in polygynous marriages are coerced into unprotected sex, they are exposed to a higher risk of HIV transmission as a result of the man having unprotected sex with multiple partners.
 

The Ugandan government has failed to enact laws for the effective prosecution and punishment of acts of violence against women. Inequitable divorce laws make it difficult for women to terminate their marriages legally. The government has yet to criminalize marital rape. Draft legislation to regulate domestic relations and sexual offenses has been pending since at least the early 1990s, despite vigorous lobbying by many of our local NGO partners. Moreover, none of the pending legislation adequately addresses domestic violence––nor will it as long as the government upholds the notion of the inviolability of marital privacy and fails to address discriminatory marriage and property laws that impede women’s escape from abusive marriages. State prosecutors told us that few domestic violence cases are actually prosecuted. In addition, women we spoke with said government officials often address domestic violence charges by attempting to reconcile the parties and pressuring the women to return to their abusive husbands.

 

Human Rights Watch is working with several local women’s and human rights groups in Uganda to hold the government accountable for its failure to prevent and remedy domestic violence, establish relevant medical protocols, and modify and transform harmful traditional practices. International human rights law has been a useful advocacy tool. By systematically failing to enact and enforce criminal laws and address violence against women in the home, the government in effect condones and endorses it. When government agents such as the police pay inadequate attention to domestic violence compared to other forms of violence, we argue that this violates provisions upholding the right to equal protection under the law and provides proof of tacit state complicity.

 

Despite oversight by UN committees of Ugandan state implementation of international treaties such as the International Covenant on Civil and Political Rights, the International Covenant on Economic, Social and Cultural Rights, and the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW), Ugandan NGOs assert that government efforts to improve the socioeconomic status of women have been minimal. They argue that despite the government’s gender-progressive reputation and a rhetorical commitment to women’s rights, many changes are cosmetic and do not impact women on the ground. The abdication of state responsibility has left many of the NGOs working with Human Rights Watch in Uganda as the only providers of any recourse to battered women in the form of legal education and representation, shelters for abused women, and care and support for women living with HIV/AIDS.

Uganda is blessed with a developed and vibrant network of NGOs working on women’s rights and a coherent and well-established HIV/AIDS movement. NGOs such as Raising Voices are addressing domestic violence at the community level with programs that specifically aim at male participation and include strategies such as the enhancement of the police response to domestic violence. In addition to providing us with our initial access to domestic violence survivors and women living with HIV/AIDS, Ugandan NGOs collaborate with us on advocacy through press releases and radio broadcasting. A particularly notable outcome expressed by our NGO partners has been their increased awareness of the intersection between the work of rights-based and HIV/AIDS NGOs.

 

Domestic violence leading to a heightened risk of HIV transmission is a widespread phenomenon, and research similar to that reported here could have been conducted in any one of a number of countries. Yet this is a critical time for Uganda: while a wide range of bilateral and multilateral donors is contributing extensively to HIV/AIDS initiatives, our interviews with Ugandan health officials revealed that the impressive decline in overall HIV/AIDS prevalence rates in Uganda is leveling off. These health officials also acknowledged the dangers of complacency. The failure to address the very serious underlying and contributing issue of domestic violence may compromise Uganda’s continued success in the fight against HIV/AIDS.

 

Uganda also provides an important case study for the region. The fact that domestic violence is not addressed in a country widely considered a success story in the fight against HIV/AIDS holds grim implications for African women. If women are unable to protect themselves in a country where national adult prevalence rates declined from 18.5 percent in 1995 to 8.3 percent at the end of 1999, what are the chances in countries such as Kenya, which, until recently, had no coherent government strategy to tackle HIV/AIDS, and where AIDS has reduced the average life expectancy from sixty-five to forty-six years? With Uganda included among fourteen countries slated to receive five years of AIDS program support from the United States and a grant from the Global Fund worth over U.S. $36 million to support the ongoing fight against HIV/AIDS, this is a pivotal time for addressing the links between domestic violence and women’s vulnerability to HIV––a topic unfortunately not mentioned during President Bush’s recent trip to the country.

 

The correlation between domestic violence and women’s vulnerability to HIV infection adds considerable impetus to the need for all governments to address seriously and meaningfully domestic violence against women. Otherwise, in a continent devastated by HIV/AIDS, any strategy to combat the pandemic will be compromised. Programs that attempt to prevent the spread of HIV/AIDS by encouraging abstinence from sex, fidelity, and consistent condom use are a start, but they do not address women’s unequal decision-making power and status within their intimate relationships. Human rights law, which clearly establishes state responsibility to protect women from battery, is a useful tool for holding governments accountable. The words of one victim describe it best: “After testing he would force me to have sex without a condom. I don’t know why he was opposed to condoms after testing and yet he had used them for birth control [before testing]. He said, ‘Why bother, we’re already victims.’. . . There should be a law to stop husbands forcing wives to have sex. I would use the law.”

 

Applying Human Rights to the HIV/AIDS Crisis

Nathan Geffen

In the United States and Europe, people with HIV/AIDS are living longer, healthier lives primarily because of the availability of antiretroviral treatment. Yet in the developing world, we are faced with death on a scale comparable to World War II, by a disease more lethal than any since the Black Death decimated Europe's population 600 years ago. Accounting for this disparity is simple, according to Justice Edwin Cameron, formerly a judge on the South African constitutional court and himself an HIV patient: "There are people throughout Africa…and nearly 34 million people in our whole world who are this moment dying. And they [are] dying because they don't have the privilege that I have, of purchasing my health and life."

 

The Treatment Action Campaign (TAC) is a South Africa-based grassroots NGO that campaigns for access to treatment, with a focus on HIV/AIDS patients. For us, a human rights framework is not merely an academic tool, but the fundamental basis of our advocacy. Achieving social justice on the issue of obtaining the drugs necessary to sustain life requires efforts on both the domestic and the international levels. In South Africa, we have been using legal action and the threat of legal action to force the government and pharmaceutical companies to recognize and adhere to basic rights, such as the right to health care, that are enshrined in the constitution. The international community, however, must reconsider the patent abuse of pharmaceutical companies and move faster to develop a global trust fund for combating the HIV/AIDS epidemic in all developing countries.

 

Out of the South African revolution against apartheid emerged an internationally respected constitution with a bill of rights, encompassing the rights to life, dignity, health care, and reproductive choices--the core issues underlying TAC's campaign. With the new constitution and the establishment of the constitutional court, legal action is a critical part of achieving social justice. Human rights arguments and legal action alone are, however, of limited use. It is crucial to combine them with mass mobilization, including rights awareness campaigns. In the context of HIV/AIDS, this means organizing people affected by the disease. Treatment literacy programs, protests, marches, and even civil disobedience are crucial components of grassroots pressure. This is a difficult challenge in a poor country like South Africa, which has low levels of scientific literacy, a high rate of poverty, and a high incidence of people infected with HIV/AIDS being unaware of their status.

 

We have already seen practical results in gaining access to medicine from this approach. Last year, TAC threatened legal action against the government for not implementing an HIV/AIDS mother-to-child transmission prevention (mtctp) program using antiretroviral medicines. The threat of action, coupled with protests and nonviolent street action, led to immediate results: The Department of Health announced the implementation of mtctp in eighteen pilot sites around the country, reaching 10 percent of pregnant mothers attending public antenatal clinics. While this was insufficient, it indicated a gradual realization of the rights being argued for. TAC halted its legal action in response to these measures. Since then, however, the government has wavered on its commitment and delayed the implementation of the eighteen sites. The minister of health has also suggested that there are no plans to go beyond the pilot program. TAC is thus once more considering legal action on mtctp. More important, popular action demanding a countrywide mtctp program has gained momentum, which has had the effect of speeding up the implementation of the pilot sites.

 

Another example of combining legal action on a human rights basis with popular protest was the highly publicized court case between forty pharmaceutical companies and the South African government, which began in 1997. The pharmaceutical industry attempted to block the introduction of legislation that would substantially lower the prices of medicines. TAC joined the case as an amicus curiae (friend of the court) in support of the government. A number of aspects of the legislation were contested by the industry, but best known was the principle of parallel importation, which the new legislation would allow.

 

Parallel importation is the importation of a product under patent from a distributor in another country. This does not refer to generic versions of the product, only to the patented product sold at a lower price elsewhere. Changing the law to allow these medicines into the country is important if one considers that some essential patented drugs are sold at lower prices in countries such as Spain and India than they are in South Africa. Though the reduced cost would benefit all HIV/AIDS patients, the pharmaceutical industry sees this eventuality as a breach of their property rights, which are protected under the South African constitution. TAC's counsel argued that all other constitutional rights should be considered within the context of the rights to life and dignity--the most fundamental of all human rights.

TAC coupled its legal action with a call to its allies around the world to participate in a global day of protest against the pharmaceutical industry's stand. The response was huge. In more than ten countries, including developing countries like Brazil, Kenya, and the Philippines (as well as South Africa), crowds gathered to protest this unjust policy. The result was a public relations disaster for the pharmaceutical industry and their swift withdrawal from the case. The industry's legal action has, however, succeeded in delaying the implementation of the new legislation from 1997 until the recent court case. Within the next two months, the legislation will be enacted.

 

Though important, TAC's domestic initiatives must be complemented by more concerted action on the part of the international community to get medicine to people in need. Treatment activists argue that the pharmaceutical industry is charging excessively high prices on essential patented medicines. Only competition from generic manufacturers (with royalty-based compensation for the patent-holders) offers a sustainable means of driving prices on these medicines to their marginal cost, as has happened in Brazil. The World Trade Organization Trade Related Aspects of Intellectual Property agreement, which establishes minimum standards for WTO members with regard to intellectual property law, has been partly responsible for the failure of developing countries to allow generic competition on patented medicines.

 

Though the agreement contains exceptions that are, in our opinion, sufficient from a legal perspective to allow the issuing of licenses for generic versions of products under patent to be produced and imported (with compensation to the patent-holder), developing countries have been fearful to act on these exceptions. This is because the agreement is poorly drafted and ambiguous, which leaves much scope for trade action by rich countries--influenced by the pharmaceutical industry--against poor ones at the WTO. Essentially, many developing countries have simply been intimidated out of pursuing generic importation or production. Furthermore, many poor country governments, though not all, cannot afford to supply HIV/AIDS drugs, even if they are sold close to their marginal cost. TAC and its allies are therefore promoting the establishment of a global trust fund financed predominantly by the United States, the European Union, Canada, and Japan. This fund would pay for medicines (including antiretrovirals), the development of health care infrastructures, and prevention programs. Such a fund is in the process of being established, but it requires a much larger financial commitment from the rich countries to be successful. If the human rights to health and medical care enshrined in Article 25 of the Universal Declaration of Human Rights--surely the most important global agreement and the one to which all bodies like the WTO should adhere--are to have meaning beyond mere platitudes, then the global trust fund for alleviating the HIV/AIDS pandemic must be given full support.

 

 

Health Workers Lead Fight against HIV-Related Discrimination

By Dr. Mirta Roses

 

Science has yet to find a cure for AIDS. But there is a cure for discrimination. It can be found in the thousands of health workers in the Americas.

HIV/AIDS has become the biggest threat to human survival in the last 700 years. Important gains made in child health and life expectancy in the Americas are being threatened by this epidemic, which is destroying many of the efforts and investments of past decades. It is already emerging as the leading cause of death in some countries of the region for people aged 15 to 44.

 

One harmful effect of the epidemic, which also acts as a barrier against prevention efforts, is discrimination against people who live with the virus. This discrimination can take despicable forms. Many people are turned away from schools on the basis of their HIV status, denied housing and shunned by friends and colleagues. Some even suffers physical violence. These actions are often extended to their families and communities and even to orphans whose parents died of AIDS. Worse, they can keep people from getting the treatment they need.

In part this discrimination derives from the understandable fear of a virus that is transmissible, incurable and potentially deadly. But we have learned a lot since the beginning of this epidemic.

Today there is widespread awareness that the virus cannot be transmitted through everyday contact. Most people know that there is nothing to fear if they adopt basic precautions. They know that is no reason to keep a distance from people with HIV.

 

Discrimination against people with HIV persists because it has additional, deeply rooted causes. Among them is the prejudice against groups hardest hit during the early stages of the epidemic, such as men who have sex with men, sex workers and drug users.

 

Segregating these already stigmatised groups allows some people to feel invulnerable to HIV. It provides an excuse for them to neglect to take those basic precautions. It is an irony of tragic consequences: The ones who most discriminate are precisely the ones less likely to protect themselves against HIV transmission.

In many countries, heterosexual transmission and female rates in general population are now the highest.

When discrimination against people with HIV creeps into health services the consequences can be very serious. Discriminatory health practices include refusing to treat people on the basis of their HIV status, testing for the virus without people’s knowledge or permission, and supplying names of people with HIV to others.

Sometimes this discrimination is barely noticeable, like when health workers have an uncaring attitude towards people with HIV. This practice is extremely harmful, because fear of mistreatment prevents people from using health services when they most need them.

 

Combating discrimination does not mean that differences should not be acknowledged. It only means that different treatment must be based on objective and reasonable criteria, intended to rectify, not exacerbate, inequities within society.

 

Health workers need all the support we can muster for the difficult task of caring for people with HIV and AIDS. Some of them need help to overcome their own prejudices. Others may need assistance in dealing with fear, coping with the stress of caring for the very ill and to prevent the emotional detachment that can occur among those who look after patients dying of AIDS. Caregivers also deserve the necessary training and resources to assure that the risk of accidental transmission of the virus is kept to a minimum.

 

Most health workers do not need any external encouragement to be on the front lines in the fight against discrimination against people with HIV. They do it because of their duty to improve health, their mandate to nurture, and their oath to take the necessary risks to care for fellow human beings. These and other public health interests provide a compelling justification for identifying and eliminating discrimination on the grounds of HIV status.

It is important to recognize the dedication of the thousands of health workers in the Americas who are striving both to provide good health care and to combat discrimination against people with HIV. We need to show special appreciation for the altruism and the courage of many doctors, nurses, laboratory workers and other staff who joined the response to the epidemic in its early stages. Their commitment to care for people with AIDS overshadowed the danger of catching an unknown disease. Their determination to serve overcame any alienation they may have suffered vis-à-vis their own colleagues.

 

The daring example of these pioneers is proof that health workers are set to play a leading role in the community and in society in building a supportive, non-discriminatory environment for people with HIV.

 

 

 

The Importance of Supportive Environments

 

In addition, there is a need for education, training, and programming that will change discriminatory attitudes in the community, at school, in the workplace, among professionals, and in research, in order to create environments that will decrease the risks to health, including HIV infection, among people who are not heterosexual, and that will support gay men, bisexuals, and lesbians with HIV/AIDS.

 

No Quick Fix

 

There is no quick fix or easy answer to the many problems raised by HIV/AIDS. While the impact on human rights cannot be the only consideration in designing public health policy, the fight against discrimination and for respect of the dignity of all people must be treated “as seriously as science, medicine, and public health,” recognising that HIV and AIDS have disproportionately affected vulnerable populations, including gay men, at least in part because of their vulnerability and the discrimination they have been subjected to.

Prevention campaigns, public health measures, and the other interventions that have been undertaken to reduce the spread of HIV have been and continue to be important, but they often do not address the underlying problems that cause vulnerability to HIV. We must address these problems. Sometimes, this requires only minor changes in laws. Sometimes, it requires changes in attitudes that can only be achieved in the longer term. In all cases, it requires a commitment to fight HIV/AIDS, rather than the people most affected by it and their behaviours, and to fight bigotry and prejudice in society. It also requires recognition of the fact that discrimination, although it has diminished and although certain rights have been extended to gay men and lesbians, remains pervasive and that gay men and lesbians deserve to be treated with equal respect as a matter of justice and, in the context of HIV/AIDS, because this would help reduce the spread of HIV and allow us to better care for those with HIV/AIDS.

 

Violence and Vulnerability

 

There is a clear link between HIV transmission and acts of sexual violence, rape in particular. Those most affected by this cycle of violence are women sex workers, whose clients accuse them of transmitting the virus while, ironically, many demand services without condoms. With the increasing incidence of sex tourism and migration, more and more women and girls are infected with HIV. Trafficking networks take advantage of the poverty, unemployment and abandonment faced by thousands of women, misleading them with promises of work and money and finally forcing them to work in prostitution.

 

Another aspect of women's vulnerability to HIV/AIDS is linked to age and economic status. AIDS is more common among young and poor women, and not by chance: the virus mainly affects the sectors of the population that are most discriminated against, those lacking basic education, decent housing, adequate food and access to quality medical care. The drugs used to treat HIV/AIDS are either unavailable or far too expensive for limited budgets. As a result, HIV is the third leading cause of death for men between 25 and 44 years of age and the thirteenth leading cause of death for women of the same age group. (CIMAC 1998)

 

This situation is compounded by right-wing Catholic campaigns that oppose condom use, increase levels of misinformation and reinforce the ignorance of the general population, especially young people who are potentially at risk. According to statistics from CONASIDA in Mexico, of the 53,000 people registered with HIV/AIDS since January 1998, none used condoms as a form of protection. Of the nearly 10,000 young Mexicans who are living with the virus — 8,000 men and 2,000 women — 70% were infected as adolescents (CIMAC, 1998). UNAIDS asserts that correct use of condoms reduces the probability of transmission to one in 90,000.

For women, this situation is twice as serious since, in most cases of extreme poverty, they alone bear the burden of providing for their family. It is not unusual for women to have several partners as a survival strategy, which places them at a disadvantage since they must submit to the men's desires with all the risks that this implies for their lives and health. Equally serious is the discrimination and moral censure to which HIV-positive women are subjected. AIDS is often viewed as "a punishment for immorality." Women diagnosed with HIV often suffer abuse, loss of employment, divorce and abandonment by their families, which are all violations of their human rights.

 

Children in a home with an HIV positive relative can also suffer trauma and stress caring for infected family members. This is aggravated by the stigma often associated with HIV/AIDS.

Children who lose their parents and are taken in by relatives who already live in poverty, often forfeit their education and usually must work to support their new extended family. In other circumstances, children who are not cared for by relatives become discriminated against and are often forced to fend for themselves, which places them at high risk of exploitation and abuse which can result in HIV infection, as they struggle to survive on their own.

Because HIV/AIDS thrives in an atmosphere of shame and secrecy, it often goes undetected and spreads quickly. By breaking the silence and by making prevention information and services available and encouraging open communication, the rates of transmission can be reversed. Children and young people must have access to information and services to better protect themselves from the disease.

To tackle HIV/AIDS, particularly in the developing world, Save the Children urges:

 

 

In this lesson we learned that: