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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

       

Gay and Lesbian Issues and HIV/AIDS: Final Report

by John Fisher, Ralf Jürgens, Anne Vassal, Robert Hughes
© Canadian HIV/AIDS Legal Network and Canadian AIDS Society, Montréal, 1998
ISBN 1-896735-12-6

 


BACKGROUND

This chapter begins with a review of how, historically, gay men and lesbians have suffered persistent patterns of discrimination and persecution (A History of Discrimination). It then shows how the HIV/AIDS epidemic has been accompanied by a second epidemic, an epidemic of stigma and discrimination against those living with or affected by HIV/AIDS, and how the appearance of HIV/AIDS has consolidated prejudices about homosexuality and intensified and extended discrimination against gay men, usually based on assumptions like "All gay men have AIDS and are infectious" or "Gay men are to blame for AIDS."9 (The Advent of AIDS). The chapter concludes by pointing out the links between AIDS and human rights, showing that protection of human rights is a necessary component of HIV/AIDS prevention and care, and that health and human rights are inextricably linked (Human Rights and the HIV/AIDS Epidemic).

A History of Discrimination

The historical context of legal and social discrimination against gay men and lesbians is central to an understanding of the interaction between homophobia and HIV/AIDS issues, for when the HIV epidemic started in the early 1980s, governments and policymakers were unequipped to overcome this history of stigmatization and to deal with the gay and lesbian communities in an accepting and responsible manner. Most recently, this has been acknowledged in the report of the Commission of Inquiry on the Blood System in Canada, released on 26 November 1997,10 which criticizes key decision-makers in the federal bureaucracy and the Canadian Red Cross who "recoiled from responsibility"11 in dealing with the impact of HIV upon gay men and lesbians, and failed to connect with gay and lesbian communities to develop mechanisms to limit the spread of the virus.

General Overview

The historical treatment of gay men and lesbians discloses a human rights record of which governments cannot be proud. To this day, gay men and lesbians are called unnatural, and their relationships are not seen as traditional – although they have been forming relationships for as long as heterosexuals have. Gay men and lesbians have been put to death, sent to prison, and subjected to extortion and to socially accepted harassment.12 At the beginning of the twentieth century, lesbians were condemned as witches, and summarily executed. Gay men faced similar policies of extermination.

During the Second World War the attempt to eliminate gay men and lesbians reached an apogee. Hundreds of thousands were sent to the Nazi concentration camps. In a recent Supreme Court case, the Canadian Jewish Congress detailed some of the history of discrimination shared by Jews and gay men and lesbians:13

During the period of the Holocaust, when over six million Jews perished in history’s most extreme example of state-sanctioned and administered racial persecution, homosexuals were also the targets of discrimination in Nazi Germany. Homosexuals were vilified, imprisoned, tortured in concentration and labour camps, and used for "medical" experiments by a regime resolved to eliminate them. Sexual relations between Jews and Germans were outlawed by the now infamous "Nuremberg Laws", punishable by death, and sexual relations between males were outlawed by Paragraph 175 of the Criminal Code, often leading to confinement in concentration camps. As Jews were identified by their Nazi persecutors with yellow Stars of David, homosexual prisoners of concentration camps were stigmatized with pink triangles.

Lesbians were branded as asocials and forced to wear black triangles in Nazi concentration camps. During the decades that followed the end of the War, homosexuality continued to be considered a crime, and in most countries in the world, including Western countries, was punishable by imprisonment. Even today, many countries and states maintain criminal prohibitions on same-sex sexual activity. Many of them – including Algeria, Chile, Cyprus, Ecuador, Guyana, India, Iran, Jamaica, Kenya, Lebanon, Mauritius, Morocco, Rumania, Sri Lanka, Sudan, Tanzania, Togo, Trinidad and Tobago, Tunisia, many States in the United States, and Zambia – are also signatories to international human rights documents.14

Penalties vary widely, from countries where the law is not strictly enforced, to those in which sanctions include whipping, life imprisonment and death. The embassy of Iran, a country that maintains the death penalty for homosexuality, has stated that "homosexuality in Iran, treated according to the Islamic law, is a sin in the eyes of God and a crime for society."15

Many other governments refuse to acknowledge that homosexuality even exists, or maintain discriminatory ages of consent. As one embassy reported: "The practice of homosexuality does not exist in Congo."16

Medicine and several other scientific disciplines have also not been without prejudice when it comes to sexual orientation. Over time, they have skewed our knowledge about homosexuality and often contributed to discrimination. In particular, many research projects have attempted to find the "cause" of homosexuality. These projects, the emphasis of which has been on pathological aspects, have concentrated on homosexuality as deviance in relation to a heterosexual norm and have put forward several reasons for this, including hormonal, genetic, sociobiological and psychological differences. Their goal has been to identify and correct differences in homosexuals or bisexuals, and they have sometimes led to experimental treatments such as lobotomy, aversion therapy, and institutionalization, in an attempt to "cure" homosexuality.

It was only in 1973 that the American Psychiatric Association eliminated homosexuality from its list of mental illnesses, followed much later, in 1993, by the World Health Organization. However, even today some research projects, although fewer in number, continue to take the approach that homosexuality can or should be cured.

 

The Situation in Canada

The experience of homophobia and heterosexism is inextricably a part of being gay, lesbian or bisexual in this country [Canada]. To be gay, lesbian or bisexual is to be discriminated against, both by other individuals and by institutions. To be gay or lesbian is to be defined as "other," "sick," "deviant," "abnormal," "criminal."17

Gay men and lesbians in Canada have suffered persistent patterns of discrimination and persecution. They have been treated as mentally ill and subjected to conversion therapies, including electroshock treatment. They have been targeted by discriminatory laws, such as an immigration law that prohibited their entry into Canada and subjected those who were immigrants to the threat of deportation (1952-1977), and a penal law that criminalized certain forms of gay male sexual expression and rendered gay men vulnerable to indefinite incarceration as "dangerous sexual offenders" (1892-1969). They have been excluded from certain aspects of public life. During the 1960s, for example, countless gay and lesbian witch hunts were initiated by the federal government in an attempt to purge the federal public sector of homosexuals. The Royal Canadian Mounted Police conducted investigations of thousands of federal employees in an attempt to identify those who were homosexual, for the purpose of dismissing them from their employment. As a result, approximately 150 homosexual federal civil servants resigned or were dismissed from their employment without just cause. The government paid a Carleton University psychologist $5000 to come up with a device to identify homosexuals. One such test required suspected homosexuals to hold a bag of heat-sensitive crystals while the investigator uttered words such as "circus" and "banana."18

Until recently, gay men and lesbians were not permitted to participate openly in the Armed Forces. They have faced discrimination in the private sector, in areas such as employment and housing, and only recently have been afforded the protection of most provincial and federal human rights acts against such discrimination. They have been targeted by hate-motivated crimes, and, on many occasions, deprived of adequate police protection. Verbal harassment and anti-gay and anti-lesbian violence, including murderous assaults, continue to be commonplace.

Gay men and lesbians have been subjected to numerous damaging stereotypes. Gay men have often been characterized as sexual predators and child molesters, while lesbians have been rendered invisible, dismissed as asexual and depicted as unfit parents.

Same-sex relationships have been devalued and treated as unworthy of recognition and respect. Numerous federal and provincial statutes, in areas such as taxation, succession, immigration, and family law, recognize only heterosexual relationships. Such statutes marginalize the individual partners in same-sex relationships, stigmatize their children, and undermine the effective functioning of their family units, by refusing to recognize the relationship between children and their de facto lesbian and gay parents for the purposes of succession, refusing to permit lesbians and gay men to sponsor their foreign-born partners for the purposes of immigration, etc.

Gay and lesbian history has been obscured through the erasure of historical references to homosexuality and lesbianism. Contemporary references to gay and lesbian sexualities in popular culture are increasing, but such references often do not accurately reflect gay and lesbian experience and sometimes even reinforce pejorative stereotypes about gay men and lesbians.

Gay and lesbian invisibility is reinforced by the fact that many gay men and lesbians are forced to conceal their sexual identities, fearing discrimination, harassment and violence if they come out. The enforced invisibility of gay and lesbian sexualities and relationships contributes to the misconception that heterosexuality is natural and normal, whereas lesbianism and male homosexuality are deviant. This contributes to the oppression of gay men and lesbians not only because it fuels social prejudice against them, but also because many of them, particularly youth, internalize the message that they are not normal. Consequently, many suffer insecurity, anxiety and shame, and lack the role models needed to develop fulfilling relationships.

 

The Advent of AIDS

In recent years, no disease has created so much anguish and fascination as AIDS, mixing together as it does age-old fears and taboos about epidemics, homosexuality and death.19

It was in this social and political climate that HIV/AIDS first made its presence felt. HIV/AIDS wrought havoc in communities that were being constructed. Gay men, who were just beginning to make claims for their communities and to create social structures, saw their recent and fragile freedoms being limited. Within a few years, gay communities were being decimated. In many cities in North America and Western Europe, AIDS became the leading cause of death among men aged 20 to 49.20

Arguably, the advent of HIV/AIDS may also have had some positive side effects: many AIDS service organizations have been successful in gaining public legitimacy and governmental support and have served as safe places where gay men and lesbians can be out in their workplace and serve the gay, lesbian and bisexual communities; and, to some extent, AIDS service organizations have operated as advocacy groups with respect to gay and lesbian health-care and human rights issues. In addition, some have argued that the AIDS epidemic has fostered the maturation of gay and lesbian communities and provided models of care and support that were previously nonexistent. They have pointed out that gay and lesbian communities have generated generous financial support and volunteer efforts for AIDS causes and have suggested that public attitudes about homosexuality may have changed for the better, due at least in part to respect for how gay men and lesbians have responded to the challenge of AIDS.

However, overall, the impact of the epidemic has been devastating. This section of the Report shows that, in Canada, HIV/AIDS has affected gay men more than any other group of the population (Epidemiology).

The section then discusses how, since the beginning of the HIV/AIDS epidemic, there has been a second epidemic, an epidemic of stigma and discrimination directed at those living with HIV/AIDS and at those associated, in the public mind, with HIV/AIDS. The section shows how stigma and discrimination on the basis of HIV/AIDS reinforce discrimination on the basis of sexual orientation and other grounds – one cannot "talk about discrimination based on HIV or AIDS without talking about many other forms of discrimination," particularly against gay men, drug users, women, prostitutes and, generally, the poor and marginalized.21 In effect, "all people with HIV ... encounter homophobia and homophobic discrimination."22 The section then provides a definition of HIV/AIDS-related discrimination and shows how the epidemic of stigma and discrimination has affected the lives not only of people living with HIV/AIDS, but also of their lovers, families, and caregivers. The section concludes that, in 1998, stigma and discrimination against people with, or affected by, HIV/AIDS continue to be pervasive (The Second Epidemic: Stigma and Discrimination).

The section focuses on gay men because of the disparate impact HIV/AIDS has had on them. Doing otherwise would be a futile and counterproductive exercise in political correctness and would only reinforce what gay men have been witnessing since the late 1980s – the shift in attention from gay men to other populations, with less and less funding and efforts devoted to fighting the epidemic among gay men, while the epidemic continues to disproportionately affect them. Clearly, the advent of HIV/AIDS has affected lesbians to a lesser extent than gay men and the risks faced by lesbians in the HIV/AIDS epidemic are clearly not the same as those confronting gay men. In this section, the main concern therefore had to be on the relationship between the advent of AIDS and reinforced stigma and anti-gay discrimination. However, this does not mean that lesbians have not been impacted by HIV/AIDS. There are HIV-positive lesbians, but knowledge about transmission from woman to woman is still limited. Interventions directed specifically at lesbians in the context of HIV have been rare. In addition, the lives of many lesbians have been very much impacted by HIV/AIDS. To mention only a few examples: they have cared for people with HIV/AIDS, mourned the deaths of many of their friends; joined gay men in the fight against AIDS – a fight that drained much of the energy of many gay men and lesbians who were previously, and often separately, engaged in the fight for the right to love the partner of one’s choice and for sexual freedom; and health issues concerning them, such as breast cancer, have received relatively little attention, in part because of the focus on AIDS in gay and lesbian communities.

 

Epidemiology

Men Who Have Sex with Men

As of 30 June 1997, 72.5 percent (10,943) of the total number of AIDS cases (15,101) reported to Health Canada were attributed to men who have sex with men. An additional 4.3 percent (655) were attributed to the combined category of men who have sex with men and use injection drugs. The annual number of AIDS cases attributed to men who have sex with men leveled off from 1992 to 1994 and has decreased since then, but remains very high.23

Data on AIDS cases provide a picture of HIV infection approximately ten years old. To estimate more recent trends in HIV infection, Health Canada relies on data on HIV testing, HIV prevalence and incidence, and risk behaviour among men who have sex with men. The data suggest that the rate of infection among men who have sex with men has been decreasing since the mid 1980s.24 However, until very recently, by far the highest number of new HIV infections still occurred among men who have sex with men. In addition, while new cases of infections among gay men slowly declined as a percentage of the total number of new cases of infections, at the end of the 1980s there appears to have been a resurgence of HIV infection among younger men who have sex with men.25 The rate of infection in a cohort of gay and bisexual men in Vancouver between the ages of 18 and 30 was 3.1 percent as of December 1996, twice as high as the authors of the study expected.26

Generally, it has been estimated that between 10 and 20 percent of men who have sex with men may be living with HIV.27 In a survey of 5000 gay and bisexual men interviewed in gay venues in 1991, 12 percent reported they were HIV–positive.28

Discrimination against gay and bisexual men has itself affected the extent and reliability of data on HIV infection in this population, contributing to the paucity of studies in cohorts of gay and bisexual men, the reluctance of gay and bisexual men to identify themselves as such, and uncertainty as to the total number of gay and bisexual men in Canada.

Although several studies of cohorts of gay men have been carried out from the onset of the epidemic in Canada,29 most epidemiological research has been undertaken in populations less affected by HIV than gay men – populations better known by those traditionally carrying out research and by those who commissioned the research. One may ask why this has been the case: was it a reflection of the (lack of) concern of public health authorities (for gay men), of a lack of interest on the part of researchers, or of other reasons? Another factor that may influence the reliability of data on HIV infection is that some gay and bisexual men are reluctant to identify themselves as such and to disclose their sexual orientation to public health authorities, fearing stigma and discrimination. Other men may have sex with men but not identify themselves as gay or bisexual.30 Finally, epidemiological estimates of the prevalence of HIV infection are that much more uncertain because the denominator, namely the number of gay men, is a matter of controversy. Estimates of this number are still based on a study carried out during the late 1940s on a sample of more than 5000 people in which 10 percent of the men and 4 percent of the women defined themselves as exclusively gay or lesbian.31 In contrast, in a recent French study of more than 20,000 people, only 4.1 percent of men and 2.6 percent of women admitted to having had sex with a person of the same sex at some time in their life. The difficulties of undertaking research in this area are obvious.32 In a context in which marginalization is still rampant – and France is no exception – how could men who have sex with men and have female partners define themselves without fear as bisexual, over the telephone, at suppertime! In addition, how can a telephone study such as that undertaken in France provide information on young people, drug users, the homeless, male sex-trade workers – in short, men defined as being "at risk" of contracting and transmitting HIV infection – precisely the men who may have sex with men and on whom no information is available. The danger of studies that underestimate the prevalence of homosexual behaviour is that they may lead to insufficient resources being made available to prevent the transmission of HIV infection among men who have sex with men.

 

    

Lesbians

A major problem, and arguably a sign of discrimination, is that lesbians have largely been ignored in the HIV/AIDS epidemic. Lesbian sex has been absent from most discussions of AIDS since the epidemic began, and the subject of whether lesbians are at risk or not is quite controversial. Making the situation even more difficult to evaluate, there are four myths surrounding lesbians: they don’t prostitute, they don’t use injection drugs, they don’t have sex with men, and they don’t get AIDS.33 The general opinion, therefore, is that they are not at risk, "that lesbianism is the safest sex around."34

One reason for the controversy is that there is very little data to substantiate whether lesbians are at risk or not. A 1992 US article talks about four cases of woman-to-woman transmission that had been reported by doctors to mainstream medical journals. The cases were said to have involved women who reported oral sex with an HIV-positive woman as the only possible route of infection.35 The same article cites an observational database study undertaken by the US Centers for Disease Control (CDC) of patients at 27 community-based clinics that included 287 female HIV cases. Among the female cases, researchers suggested that seven could be cases of woman-to-woman transmission.36 Reports by community health projects in several cities in the United States also contend that some of their clients had no risk factor aside from lesbian sex. However, some suggest that cases of woman-to-woman transmission have not been properly documented and argue that lesbian sexual transmission is virtually non-existent. They point out other significant risk factors in the cases attributed to woman-to-woman transmission and say that it is impossible to depend on patients to truthfully disclose how they were exposed to HIV: "An out lesbian might find it easier to talk about sexual behavior than a drug or alcohol history; she might be unwilling to talk about heterosexual contacts; she could have memory blackouts from drug or alcohol use."37

What we do know is that there are HIV-positive lesbians. For example, in a study that analyzed 9,717 AIDS cases of adult women from 1980 to 1989, 79 of the women said that they had had sex exclusively with women since 1977; however, of that group, 75 were injection drug users and 4 had received blood transfusions.38 In a survey of 181 lesbians (10 of them injection drug users) undertaken in Turin, Italy in 1992-93, 6.1 percent (n=11) tested HIV-positive.39 In another survey undertaken in San Francisco and Berkeley among 500 lesbian and bisexual women, of whom 10 percent reported injection drug use, 1.2 percent were HIV-positive.40 However, no epidemiological studies of lesbians have been undertaken in Canada. A few studies notwithstanding, the numbers of lesbians with HIV/AIDS remain largely unknown, and speculation continues about whether lesbians can sexually transmit HIV to one another.

Most would agree that if transmission between women is occurring, it is inefficient, and that "[e]ven if it is occurring at a very slow rate, social-sexual patterns – lesbians tend to have fewer sexual partners than gay men – make it unlikely that lesbians as a group will ever be devastated in the same way that gay men have been."41 The greatest risk factor for lesbians is the use of injection drugs. Most lesbians who are infected fall into this category, a strong reason for recognizing drug use among lesbians and advocating an educational program stressing the dangers of HIV transmission through the sharing of needles.42 Another route of infection is sex with men. In one study of women who defined themselves as lesbians, 46 percent had had sex with men at least once since 1980.43 In the lesbian sex survey undertaken in 1995 by the gay and lesbian magazine The Advocate, three out of four respondents indicated that they had experienced vaginal intercourse with a male. Five percent of lesbians surveyed had had a male sex partner within the past year.44 And when women who consider themselves as lesbians "do have sex with a man, often it will be with one who is gay or bisexual – increasing their risk."45 Finally, the lesbian sex survey concluded that "there may be some truth" to the stereotype that lesbians are overrepresented in the field of sex work: nine percent of those who completed the survey said that they had been paid for sex – six percent by males, two percent by females, and one percent by both.46

The Second Epidemic: Stigma and Discrimination

Persons with HIV/AIDS face double jeopardy: they face death, and while they are fighting for their lives, they often face discrimination. This discrimination is manifested in all areas of life – from health care to housing, from education to work to travel. It is generally based on ignorance and prejudice and is expressed in particularly harsh forms against the most vulnerable: homosexual men, women, children, prisoners, and refugees among them.47

If one were to read the Universal Declaration of Human Rights with the aim of finding out which human rights have been affected by various responses to AIDS, one would see that most, if not all, basic human rights and freedoms, laid down as the common standard of achievement for humanity more than 40 years ago, have been challenged, violated, or denied in the context of HIV/AIDS. ... The core of human rights is the postulate that all human beings have equal rights. This has been challenged by denying human rights to people affected by AIDS.48

Since the beginning of the HIV/AIDS epidemic, there has been a second epidemic, an epidemic of stigma and discrimination directed at those living with HIV/AIDS and at those associated, in the public mind, with HIV/AIDS. Prejudice, stigmatization and even violence against people living with HIV/AIDS "are a worldwide phenomenon," and "AIDS has been successively used to direct blame, stigmatisation and prejudice at homosexual men, prostitutes, intravenous drug users, Haitians, African students in the USSR and India, blacks and Hispanics in the United States, US seamen in the Philippines, foreigners in Japan, Europeans in Africa."49

 

Stigma50

[T]he stigmatized are a category of people who are pejoratively regarded by the broader society and who are devalued, shunned or otherwise lessened in their life chances and in access to the humanizing benefits of free and unfettered social intercourse.51

Stigma "is a powerful discrediting and tainting social label that radically changes the way individuals view themselves and are viewed as persons."52 People who are stigmatized are usually considered deviant or shameful for some reason or other, and as a result are shunned, avoided, discredited, rejected, restrained or penalized. As such, stigma is an expression of social and cultural norms, shaping relationships among people according to those norms. Stigma marks the boundaries a society creates between "normals" and "outsiders," between "us" and "them."

Multiple Dimensions of Stigma

HIV/AIDS is not alone among illnesses and diseases in being marked by stigma. Other conditions, such as epilepsy, mental illness, cancer, tuberculosis, and syphilis, have been stigmatized and stigmatizing, both in the past and the present. What distinguishes HIV/AIDS from many illnesses and diseases, however, are the many dimensions of AIDS-related stigma. Research into HIV/AIDS-related stigma has found that people living with HIV/AIDS are stigmatized because:53

  • HIV/AIDS is associated with behaviours that are already stigmatized or considered deviant, particularly homosexuality and injection drug use;
  • people living with HIV/AIDS are thought to be responsible for having contracted HIV;
  • HIV/AIDS is a life-threatening disease;
  • people are afraid of contracting HIV; and
  • the religious or moral beliefs of others lead them to conclude that having HIV/AIDS is the result of a moral fault, such as promiscuous or deviant sex, that deserves punishment.

It is the combination of these dimensions of stigma, together with their strength, that makes it so difficult to overcome HIV/AIDS-related stigma. When researchers have attempted to determine the extent to which various dimensions of HIV/AIDS-stigma contribute to attitudes toward someone living with AIDS, they have found that when others were held more responsible for the onset of AIDS, and when the cause of AIDS was perceived as more external, people reported more positive emotions toward the person living with AIDS, and that more positive emotions corresponded with an increase in helping behaviour. At the same time, a negative attitude toward homosexuality contributed to negative emotions toward the person living with AIDS and, together with concern about the risk of infection, corresponded with less inclination to help the person living with AIDS.54

The Links with Homophobia

Gay – Got AIDS Yet?55

The link in people’s minds between homosexuality and AIDS is so firmly established that discrimination against people with HIV/AIDS is inseparable from discrimination on the basis of sexual orientation.56

The early prevalence of HIV/AIDS among gay men in North America has resulted in an enduring association between the stigma of HIV/AIDS and the stigma of homosexuality. The predominantly negative attitudes toward homosexuality have influenced people’s attitudes and behaviour toward people living with HIV/AIDS in general and gay and bisexual men in particular.57 As a result:

  • Stigma associated with homosexuality is transferred to HIV/AIDS, so that people living with HIV/AIDS may be discriminated against because they are assumed to be homosexual. It has been said that "[t]he historic and very real links between gay men and HIV have generalised some aspects of homophobia to HIV, so that even if gay men stopped getting HIV altogether, homophobic reactions to HIV issues and to people living with HIV would stay in the public mind for a long time."58 This means that, in effect "all people with HIV ... encounter homophobia and homophobic discrimination."59
  • Stigma associated with HIV/AIDS is transferred to homosexuality, so that gay and bisexual men experience discrimination because the are assumed to be HIV-positive or to be the cause of the HIV/AIDS epidemic. From the beginning, HIV/AIDS was associated with gay men. AIDS was called the gay plague, gay cancer, and Gay Related Immune Deficiency (GRID), terms that made it possible to socially "contain" the spread of the virus. The HIV/AIDS epidemic has intensified and extended discrimination against gay men, usually based on assumptions like "All gay men have AIDS and are infectious," or "Gay men are to blame for AIDS."60 Apart from discrimination on the basis of their sexual orientation, gay men now have to fear being discriminated against because of HIV/AIDS, regardless of whether they themselves are HIV-positive. A study of gay and bisexual men carried out in 1991 revealed that one respondent in five feared discrimination because of AIDS.61
  • Men who have acquired HIV through sex with other men have been the objects of considerable blame and little sympathy, in contrast not only with people who acquire disease through events beyond their control (as might be expected from prevailing attitudes about responsibility for disease) but also with people who acquire disease because of their habits or lifestyle. In a study of attitudes to people living with AIDS undertaken in Australia, many expressed the view that gay men were to blame for their disease and that gay men with HIV/AIDS should pay for their own health care.62 Generally, there has been a dominant undercurrent of hostility toward many people with HIV/AIDS, as if they are somehow to blame. People with HIV/AIDS have been divided into two categories – the "guilty majority" of gay men and injection drug users, and the "innocent minority" of hemophiliacs or transfusion cases.63
  • For gay and bisexual men living with HIV/AIDS, disclosure of HIV status may entail disclosure of their sexual orientation, and the possibility of discrimination on the basis of their sexual orientation as well as their HIV status.
    

In addition, the association between HIV/AIDS and homosexuality has had effects on how governments and institutions have reacted (or failed to react promptly, adequately and consistently) to HIV/AIDS, and on HIV prevention in the general population (see infra, "The Impact of Stigma and Discrimination").

It should be noted that men who have sex with men may not identify as gay or bisexual and may have a very loose association with the "gay community."64 The categories "men who have sex with men," "bisexual," and "gay" comprise a diversity of identities, cultures and behaviours. The degrees to which such men may have been affected by the negative stereotypes and stigmas associated with homosexual activity or identity in their surrounding culture will vary.65

 

Discrimination

Definition of HIV/AIDS-Related Discrimination

The Joint United Nations Programme on HIV/AIDS (UNAIDS) has developed a protocol for the identification of discrimination against people living with HIV/AIDS. According to the protocol, HIV/AIDS-related discrimination is defined as follows:

Any measure entailing any arbitrary distinction among persons depending on their confirmed or suspected HIV serostatus or state of health.66

The protocol distinguishes between legitimate and illegitimate discrimination. Illegitimate discrimination is unjustified, disproportionate, and arbitrary. A measure or an action is unjustified if it lacks rational and objective reasons. It is disproportionate if the means employed and their consequences far exceed or do not achieve the aims pursued. It is arbitrary if it seriously infringes the rights of the individual and is not necessary to protect the health of others.67

The protocol recognizes that "[d]iscrimination against people living with HIV/AIDS also extends to those with whom AIDS is associated in the public mind (homosexuals, prostitutes, drug addicts, hemophiliacs, and family members and associates of HIV-positive people)."68

In 1991 the Anti-Discrimination Board in the state of New South Wales, Australia, held a public inquiry into HIV/AIDS-related discrimination. The Board observed that HIV/AIDS-related discrimination can take a variety of forms, which may be more or less obvious or identifiable:

It can range from almost imperceptible attitudinal hostility through to physical violence. It can manifest itself in forms which appear reasonable and justifiable, or in extremes of pathological behaviour. It is sometimes blatantly explicit, but more often subtle, sophisticated and difficult to define.69

The Board identified eight forms of discrimination:70

  1. direct discrimination: discrimination that is explicitly based on characteristics of or attributed to the individual against whom the discrimination is directed, including characteristics attributed on the basis of stereotyping.
  2. indirect discrimination: discrimination that is based on the establishment of rules, policies or conditions that do not in themselves appear discriminatory, but that have the effect of discriminating against particular groups of people who are unable, or less able, to comply with the conditions.
  3. reactive discrimination: discrimination that occurs when a person is confronted with someone who is, or who is assumed to be, a member of a group against which the person holds strong prejudices; such discrimination is not intentional or planned.
  4. proactive discrimination: discrimination that is intentional and planned; it is often found in the development of policies, procedures, and rules that have as their purpose to preclude certain groups, or to exclude them if they are found to be present.
  5. passive discrimination: discrimination that occurs by failure to act, when the particular needs of particular groups are not met, often with the justification of providing equal treatment for all, but, in fact, failing to meet the special needs of some.
  6. scapegoating: discrimination that seeks to subject people to punishment, usually on the basis that they are to blame for some social evil, and that involves actively seeking out and victimizing the objects of prejudice.
  7. harassment: discrimination that involves subjecting a person to psychological, emotional and sometimes physical discomfort, because of characteristics s/he has or are attributed to him/her; it may range from refusal to acknowledge or deal with a person, through indirect and direct verbal ridicule or abuse, to interference with property, and to the extreme of physical assault.
  8. vilification: discrimination that involves making statements about a group of people on the basis of their characteristics or of stereotypical assumptions about them that bring members of the group into hatred, ridicule or contempt.

Discrimination – Both Feared and Experienced

Studies of stigma related to HIV/AIDS, as well as other illnesses such as epilepsy, have drawn a distinction between "felt" and "enacted" stigma. Felt stigma refers to the shame associated with the illness and the fear of being discriminated against on account of the illness; enacted stigma refers to actual experiences of discrimination. There is abundant evidence that felt stigma and anticipated discrimination prevent people with HIV/AIDS from disclosing their HIV-status to family or friends, from seeking or obtaining employment, from accessing health-care benefits, health-care services, or other services. As a result, people with HIV/AIDS and their caregivers may live with the effects of secrecy about HIV-status, social isolation, concern about how they or those related to them might be treated, lack of employment opportunities, insufficient funds for drugs, and other consequences. Moreover, it is clear that people living with HIV/AIDS have in fact experienced stigma and discrimination, whether in inappropriate questions about "how did you get HIV," hostility in the community, refusal of medical services, loss or refusal of employment, travel restrictions, and so on. In addition, many of the populations affected by HIV/AIDS — gay and bisexual men, injection drug users, sex workers, Aboriginal peoples, prisoners — are the objects of stigma and discrimination for other reasons.

The Extent of HIV/AIDS-Related Discrimination in Canada

Breaches to human rights in the context of HIV infection occur in Canada. On the basis of specific cases heard under Human Rights codes as well as anecdotal information, they are widespread. Such breaches have occurred in relation to housing, workplace situations, access to medical care and the way in which this care is provided, custody of and access to one’s children, insurance, and on the basis of disability, sexual orientation, sex and race. Injection drug users or prisoners can be particularly vulnerable to such breaches. Blatant incidents have occurred but many are more subtle. Poverty itself becomes an issue in relation to HIV infection — some people become poor because they have AIDS and people who are poor can be more at risk.71

Surveys of attitudes in the first decade of the HIV/AIDS epidemic revealed varying degrees of discriminatory attitudes towards people living with HIV/AIDS among the general public.72 It is difficult to determine the extent to which these attitudes result in discriminatory actions, but it is apparent how such attitudes contribute to an environment in which people living with HIV/AIDS feel stigmatized, and it is also clear that people living with HIV/AIDS have experienced unfair discrimination in a wide range of areas.

In Canada, an investigation of HIV/AIDS-related discrimination undertaken in 1988-89 by the British Columbia Civil Liberties Association received reports of 83 cases of discrimination.73 The Association noted that it was not able to provide an accurate estimate of the incidence of HIV/AIDS discrimination in Canada at the time for several reasons: the inability of AIDS organizations to keep accurate records of the complaints they had received or to report those they knew of, the likelihood that people had experienced unfair discrimination but had not reported the incident, and the meagre response from the French-speaking community. Nevertheless, it concluded:

We can, however, say that AIDS discrimination is a serious problem. Thirty-three allegations have been made to human rights bodies over the past three years, despite the fact that (a) most people did not know that AIDS was a prohibited ground of discrimination; (b) some human rights bodies did not accept complaints from those who were or were feared to be HIV positive; (c) many persons with AIDS or persons who are HIV positive are afraid to complain for fear of further discrimination; and (d) many persons simply do not complain — they are more concerned to get accommodation, or to seek alternative sources of income or health care, than they are to take to task the person or persons responsible for the discrimination. That we documented a further 51 allegations of AIDS discrimination which were not brought forward to a human rights body attests to this fact.74

The National Advisory Committee on AIDS75 and the over 60 individuals and groups consulted in 1995 by the Joint Project76 also provided many examples of such discrimination. As recently as 1998, the kinds and the impact of HIV-related stigma and discrimination experienced by people with HIV/AIDS and those affected by HIV/AIDS at this time in the epidemic in Canada have been documented in HIV/AIDS and Discrimination: A Discussion Paper.77 The Paper provides ample evidence that stigma and discrimination continue to be endemic, reinforcing, once again, the call for laws, policies, programs and practices that address the causes and the effects of HIV-related stigma and discrimination. Based on a review of the academic or scientific literature, reports produced by governmental or nongovernmental agencies, and other literature,78 as well as on interviews with a selection of people living with HIV/AIDS, organizations comprised of people living with HIV/AIDS, or organizations providing services to people living with HIV/AIDS or those affected by HIV/AIDS, and the comments of participants in a national workshop on discrimination and HIV/AIDS held on 15 January 1998, the Paper concludes that, in 1998, stigma and discrimination associated with HIV/AIDS are still pervasive, but that the forms they take and the context in which they are experienced have changed since the early days of the epidemic. According to the Paper, these changes have serious implications for people with HIV/AIDS and people affected by HIV/AIDS. It notes the following key aspects of the current situation, as expressed by participants in the January 1998 workshop on discrimination and HIV/AIDS:

  • The epidemic of HIV infection is expanding among diverse populations, many of them marginalized within Canadian society. While some aspects of HIV-related discrimination are the same for all these populations, in other ways the experience and impact of discrimination are unique to the various identities that are assumed by or assigned to people with or affected by HIV/AIDS. The most marginalized among people with HIV/AIDS experience many layers of stigma and discrimination. They also have the least resources or support in seeking redress.
  • With the restructuring of the health system and the devolution of authority for programming, there is considerable uncertainty about the funding and quality of HIV/AIDS programs in future. There may be fewer programs with a specific focus on HIV/AIDS, resulting in a systemic neglect of needs that are unique to or disproportionate among people living with HIV/AIDS or the populations most affected by HIV/AIDS. At the same time, organizations that provide specific services to people with HIV/AIDS or populations affected by HIV/AIDS are faced with increasing demands, which they must meet with the same level of resources or reduced resources. The difficulty of meeting these demands is all the greater when the populations that need to be served are different; one program will not fit all.
  • With the advent of protease inhibitors and combination therapies, many — but not all — people living with HIV/AIDS are living longer and enjoying better health. While the benefits of these developments have been great, they have also been accompanied by new risks for people living with HIV/AIDS. There is a renewed impetus to adopt traditional public health measures, such as nominal reporting of HIV infection and increased partner notification efforts. There is also a prevailing sense that people living with HIV/AIDS can now lead "normal" lives, and a tendency to become more restrictive in determining whether people living with HIV/AIDS qualify for disability benefits. The fact that people living with HIV/AIDS are still vulnerable to stigma and discrimination is forgotten in these discussions. In many ways, the era of combination therapies has exposed people with HIV/AIDS to greater threat of discrimination. One participant in the workshop stated: "I was able to remain invisible living with HIV until two years ago. Now I have to carry my bag of medications around all the time — I am always visible. I carry my stigma around."
  • The era of combination therapies is also raising new concerns about the ethics of informed choice in treatment decisions made by people living with HIV/AIDS. There are reports that people feel pressured by their physicians to begin treatment with the latest generation of HIV drugs, and of instances where people have been denied services or fear losing their physician if they refuse to begin treatment. There are also questions about equity in treatment and access to care for marginalized populations, and about the extent to which they are provided with the supports that may be necessary to assist them in maintaining the complicated regimes of combinations of drugs.
  • While discrimination is still pervasive, it has become more subtle and less explicit. In the past, for example, people may have been fired outright when it was discovered they were HIV-positive. Today they may be laid off for what are ostensibly other reasons or they may be harassed and pressured to the point that they quit their jobs or go on disability. Fear of being identified at work and of losing their job in fact prevents some people from taking HIV-related medications, as a study among people living with HIV/AIDS in Montréal found.79

The Paper concludes that, even as the epidemic changes, stigma and discrimination continue to have an enormous impact on the lives of people with HIV/AIDS. It further concludes that decisions about the direction that policy and programs should take in response to the changing epidemic need to be based on, among other considerations, a full analysis and assessment of the impact of stigma and discrimination on the people infected and affected by HIV/AIDS.

 

Human Rights and the HIV/AIDS Epidemic

Safeguarding the human rights of persons with AIDS is vital not only on ethical and legal grounds but for pragmatic reasons. It is a necessity, not a luxury, and it is not a question of the "rights of the many" against the "rights of the few."80

This section discusses the links between HIV/AIDS and human rights, showing that protection of human rights is a necessary component of HIV/AIDS prevention and care, and that health and human rights are inextricably linked. It concludes by citing Justice Michael Kirby, who has an answer to all those who, over 15 years into the HIV/AIDS epidemic, still question what human rights have to do with a successful strategy to contain the spread of HIV.

Contextual factors — discrimination among them, in its various forms — can affect both people’s ability to protect themselves from HIV infection or to foster their health when infected with HIV, and society’s ability to develop and deliver effective programs in education, prevention and health care. Because of this, many around the world have urged individuals, organizations, and states to analyze the HIV epidemic from the perspective of human rights and human dignity.81 According to such an analysis, the contextual barriers to effective education, prevention, and health-care programs are identified according to universal human rights established in international law and ratified by international treaties.82 The fundamental statement of these human rights is the Universal Declaration of Human Rights.83

The value of such an analysis is that it acknowledges that discrimination is embedded within and contributes to a variety of circumstances that deprive people of their rights and dignity. Frequently, in fact, it is impossible or futile to address HIV/AIDS-related discrimination without addressing the context in which such discrimination is embedded. Thus, for example, women have experienced discrimination when their physicians have failed to advise them about HIV testing, have discouraged them from being tested, or have associated risk of HIV infection with negative connotations of "promiscuity." Such discrimination cannot be adequately understood or addressed without addressing the cultural identities of women, perceptions of risk of HIV infection and populations most affected by HIV infection among both women and physicians, and the practices of physicians in relation to women.84 Similarly, the risk of HIV infection among injection drug users who inhabit impoverished urban centres with a high density of drug users is in part (and arguably in large part) an effect of the criminal status of drug use in Canadian law, a legislated form of discrimination against drug users.85 Likewise, the risk of HIV infection experienced by Aboriginal peoples as a result of their overrepresentation among drug users and in prison populations cannot be understood or addressed without recognizing the events and structures, both past and present, that have contributed to substance abuse, migration, unemployment, and despair among Aboriginal peoples in Canada.86 So too, an environment that does not acknowledge and respect the sexual identities of gay and bisexual youth, that does not provide support at home or at school for the coming out process, and that tolerates high levels of violence and abuse against gay men contributes to the many risks to the health of gay and bisexual youth, including the risks of HIV infection.87 Finally, any analysis of what makes people vulnerable to HIV infection or what makes people living with HIV vulnerable to sickness and death must now take into account the role of poverty, independent of any risk factors, in leading to HIV infection and to sickness and death, and how the structures of our economy and our society inadvertently or programmatically benefit (discriminate in favour of) people with higher incomes or more wealth.88

Indeed, it is precisely in the context of HIV/AIDS that the strong public health rationale not to interfere with human rights has become apparent. There has been a realization that protection of human rights is a necessary component of HIV/AIDS prevention and care, and that health and human rights are inextricably linked. The chapter on the "The Impact of Stigma and Discrimination" will demonstrate this in greater detail. It will discuss what is now known about how discrimination affects the course of HIV infection among gay and bisexual men, and how discrimination affects the lives of gay and bisexual men living with HIV/AIDS.

Mann identified four reasons why human rights must be protected:

• because "it is right to do so";

• because preventing discrimination helps ensure a more effective HIV prevention program;

• because social marginalization intensifies the risk of HIV infection; and

• because "a community can only respond effectively to HIV/AIDS by expressing the basic right of people to participate in decisions which affect them."

Therefore, Mann has concluded, it is "essential and inevitable that we look to the insights and guidance of human rights, ethical and humanitarian values as we consider – as public health experts – how to move ahead and advance in policy and program in the 1990s."89 Reflecting this understanding, the Forty-first World Health Assembly adopted a resolution urging member states to:

• foster a spirit of understanding and compassion for persons living with HIV/AIDS through information, education and social support programs;

• protect the human rights and dignity of persons living with HIV/AIDS and of members of population groups, and to avoid discriminatory action against and stigmatization of them in provision of services, employment and travel;

• ensure the confidentiality of HIV testing and to promote the availability of confidential counselling and other support services to persons living with HIV/AIDS; and

• include in any reports to WHO on national AIDS strategies information on measures being taken to protect the human rights and dignity of persons living with HIV/AIDS.90

Recognizing that there is a

strong and clear public health rationale for this emphasis on the protection of the human rights and dignity of HIV-infected persons, including people with AIDS, the World Health Assembly has stated that this policy is critical to the success of national and international AIDS prevention programs. Therefore the protection of the rights and dignity of HIV-infected persons is an integral part of the Global AIDS Strategy.91

In the Declaration of the Paris AIDS Summit,92 42 countries including Canada solemnly stated their determination to fight against poverty, exclusion and discrimination. More recently, the Québec department of health and social services recommended, in order to reduce the spread of HIV, "encouraging the adoption of nondiscriminatory attitudes toward persons vulnerable to or living with HIV, for example by supporting, at the departmental level, proposals to amend current laws to favour recognition of the social status of homosexual persons."93

As expressed by the New South Wales Anti-Discrimination Board,

an effective response to HIV and AIDS related discrimination is not just about a fair go for the victims of discrimination; it is about a fair go for the whole community. The community response must be to fight the virus, not those infected with it [emphasis in the original].94

However, many citizens – and most political leaders – still question what human rights have to do with a successful strategy to contain the spread of HIV. For them, Justice Michael Kirby has the following answer:

However imperfect our understanding of the tools of behaviour modification, this much at least seems clear. To have a chance of penetrating into the mind of an individual, so that he or she secures the knowledge essential to change behaviour at a critical moment of pleasure-seeking, it is imperative to win the trust of that individual. Only in that way will their attention be captured in a manner that will convert words and information into action. Pamphlets and posters, homilies and sermons are only of minor use in this regard. What is needed is the direct supply of information by a source regarded as trusted, impartial and well intentioned, so that, by repeated messages of this kind, a general awareness about the existence of HIV can be translated into individual daily conduct.

The paradox is that laws which criminalise particular target groups (sex workers, homosexuals, injecting drug users, &c) may appear to be a suitable response. They are often attractive to the public and therefore to distracted politicians who are anxious to be seen to be doing something in the face of the grave challenge to public health that HIV presents. But experience teaches that such responses have little impact on the containment of an epidemic of this nature. They actually tend to have a negative impact on behaviour modification because they place targeted groups beyond the reach of the requisite information. They undermine the creation of the supportive social and economic environment in which effective strategies can be prosecuted.

Thus the HIV paradox teaches, curiously enough, that one of the best strategies of behaviour modification which will actually work to reduce the spread of HIV, by enhancing and sustaining self-protection, is to be found in measures that positively protect the targeted groups and uphold the rights of individuals within them. In those countries where there has been a measure of success in achieving and sustaining behaviour modification, and thereby reducing the spread of HIV infections, such strategies have been adopted ... .

To those who find the HIV paradox unconvincing or even offensive, two answers may be given. The first is that of practicality. No other strategy has been shown to work. Without effective behaviour modification HIV will continue to spread rapidly, causing enormous personal suffering and devastating economic and human loss. By 1987, most informed health officials, led by the World Health Organization, had come to recognize the force of the HIV paradox. However, their endeavour to supplement public campaigns and health prevention efforts with attention to human rights has only been partly successful. The effort must continue.

The second justification for the strategy which I have described takes me back to fundamental human rights. They are important, not because they are contained in the international constitutions or laws. Their importance lies in the fact that such rights are basic for every human being for no reason other than the humanity and unique individuality of each of us. I once explained, to a law school in the USA, the practical reasons for supporting a strategy protective of the rights of individuals especially at risk of HIV infection. A young law student rebuked the judge. He told me that I had forgotten the main reason. This was that we accord every human being that person’s human rights because it is our duty and their right. When epidemics are about, human rights tend to go out of the window. But even in times of epidemic, departures from respect for fundamental human rights must be controlled by law. They must be limited to measures that are strictly proportional and necessary. They must be compatible with the other objectives of a democratic society.95

 


FOOTNOTES

9 New South Wales Anti-Discrimination Board. Discrimination – The Other Epidemic. Report of the Inquiry into HIV and AIDS Related Discrimination. The Board, 1992.

10 The Honourable Mr Justice H Krever. Commission of Inquiry on the Blood System in Canada: Final Report. Volumes 1 to 3. Ottawa: Minister of Public Works and Government Services Canada, 1997.

11 Patrick. Gay men led fight against tainted blood: Krever report exonerates gay community from accusations. Capital Xtra, No 52, 12 December 1997, at 11.

12 For a detailed historical analysis see, inter alia, M Lever. Les Bûchers de Sodome. Paris: Fayard, 1985; R Plant. The Pink Triangle. The Nazi War against Homosexuals. New York: Holt, 1986.