|Racism, Racial Discrimination and HIV/AIDS
Tata Institute of Social Sciences, Mumbai, India
(Paper Prepared for the “UNESCO/OHCHR Workshop To Develop Educational Material to Foster Tolerance and to Eliminate Prejudice” at Paris, France, February 19-20, 2002)
It is an increasingly acknowledged reality today that through out the world those most deeply affected by the HIV epidemic are also the most severely disadvantaged, whether on grounds of race, economic status, age, sexual orientation or gender. As in the case of most other stigmatized health conditions such as tuberculosis, cholera and plague, fundamental structural inequalities, social prejudices and social exclusion explain why women, children, sexual minorities and people of colour are disproportionately impacted by AIDS and the accompanying stigma and discrimination. The nearly two decades old global history of the HIV epidemic reinforces yet again the well documented interaction of disease, stigma and `spoiled’ social identities based on race, ethnicity, sexuality and so on.
The strong linkages established early on of HIV/AIDS with gay men and other so called `risk groups’, seem to have blinded social researchers and others to the factors of racial, class and gender relations that frame AIDS as a social and not a bio-medical problem alone. Race, class and gender have been found to serve as important determinants of a person’s health and well-being status affecting his/her perception of illness, health seeking behaviour, accessibility to services and coping mechanisms. Further, because these factors usually operate in tandem, they severely compromise the person’s overall health status and ability to respond to the problem. Although, some amount of empirical evidence now exists on linking poverty and gender to HIV/AIDS, there are not enough data on the relationship between HIV/AIDS, ethnicity and race (UNAIDS/WHO, 2001). This paper makes an attempt to explore the links between racism, racial discrimination and HIV/AIDS.
1.a)The Phenomena : Racism, Racial and AIDS Related Discrimination
Race is a form of `group identity’ and arguably the basis of some of the most extreme and serious acts of discrimination and violations of human rights globally. In the domain of health, race is identified as, “a central determinant of social identity and obligations (and) an empirically robust predictor of variations in morbidity and mortaility”(Williams, 1997). To understand how race is relevant to questions of public health, care and treatment issues, it is important to first examine the phenomena of stigma and discrimination, in general, and as related to illness and diseases.
The concept of `stigma’ was first elaborated in the classic work of Erving Goffman (1963). Goffman defined stigma as “an attribute that is significantly discrediting” and which serves to reduce the person who possesses it, in the eyes of society. Relating the concept to conditions of mental illnesses, physical deformities and socially deviant behaviours such as homosexuality, Goffman argued that the stigmatized individual was seen to be a person with “an undesirable difference” (Goffman, 1963). In other words, he maintained that stigma is constructed by society on the basis of perceived `difference’ or `deviance’ and applied through socially sanctioned roles and sanctions. The result is a kind of `spoiled identity’ for the person concerned (Goffman, 1963). Three kinds of stigma were identified by Goffman: The first was called stigma derived from physical deformities; the second was the stigma associated with perceived `blemishes of individual character’ (eg., due to mental disorder or homosexuality); and the third was designated “the tribal stigma of race, nation and religion’. This third type of stigma, “transmitted through lineages” and possessed equally in all members of a family, implies that group membership and group identity could (in themselves) be sources of stigma (Wailoo, 2002). Race, then is one such group identity that is a source of stigma, prejudice and discrimination for those possessing that racial identity. When the racial identity combines with a health condition such as, HIV/AIDS, it contributes to “double stigma” (tribal stigma and stigma due to HIV/AIDS status). An early work of Postell (1951), on `Health of Slaves on Southern Plantations’ makes pictorial representations of the popular public images of African-American group identity in relation to diseases and health care. The health seeking behaviour of black Americans, for instance, is symbolized in one of the pictures by a black woman on foot, with images of quackery-chicken head, frog and snake parts – representing her health practices and beliefs, and dense vegetation and darkness framing her background. This picture is contrasted with that of a White American doctor on buggy, with images of medicinal bottles – the tools of his trade – and a sunlit background with limited vegetation. The image so created is one of backwardness, ignorance and cultural inferiority of the Black people. Citing another example, Wailoo (2001), points out how the hookworm was designated the `germ of laziness’ because of the lethargy it produced in its patients, a majority of whom were Negroes. And the fight against TB among the Negroes was described as not just a fight against the disease, but “ … against physical, mental and moral inferiority, against ignorance and superstitions, against poverty and filth” (Wailoo, 2001). In all these descriptions, notes Wailoo, one image that dominated was the image of “the carriers – a portrait of a social menace whose collective superstitious, ignorance and carefree demeanor stood as a stubborn affront to modern notions of hygiene and advancing scientific understanding…. (a people best understood as)… a disease vector…” Wailoo (2002) goes on to show how the scientific advancements of that time in the field of bacteriology gave the notion of `human disease vectors’ in the context of `Typhoid Mary’ or the `asymptomatic carrier’. And as Wailoo comments, coming from the pioneering scientists of that time, such images also bore the stamp of scientific authenticity. To illustrate this point, Wailoo cites the example of the noted hook worm researcher Charles W. Stiles who declared that the disease incidence `possibly indicates that the Negro has brought (it) with him from Africa … and we must frankly face the fact that the Negro … because of his unsanitary habit of polluting the soil … is a menace to others’ (Stiles, 1909). Thus, observes Wailoo “one important feature of stigma in public health was associated with both scientific and social ideas about `the carrier’ of disease” (Wailoo, 2002, p.5). It is clear from this example how the notion of the `disease vector’ is quite old and how it was used to stigmatise the Negro character itself. When Goffman elaborated his concept of stigma in the early 60s he referred to this negative characterization as the creation of the `spoiled identity’ (Goffman, 1963).
The stigmatization of the African American identity in relation to diseases in the early twentieth century shows a remarkable continuity today in the context of HIV/AIDS at the turn of the century. An illustration of this is the stigmatization and harassment of the Haitian people in the early 1980s, who were accused of having brought AIDS into the USA (Farmer & Kim, 1991).
The concept of stigma is integrally linked to that of `discrimination’. According to the Oxford Dictionary of Sociology, the concept of discrimination simply means “treating unfairly” and is most commonly used in the context of sociological theories of ethnic and race relations. However, more recent sociological analyses of discrimination “concentrate on patterns of dominance and oppression, viewed as expressions of a struggle for power and privilege” (Marshall, 1998, p.163).
While this sociological definition of discrimination emphasizes the structural dimensions of discrimination (Parker & Aggleton, 2002), Herek’s social psychological analyses defines discrimination in behavioural terms – “discrimination is behaviour” (Herek, 2002). In other words, discrimination is the differential treatment of individuals according to their membership in a particular group. Herek differentiates discrimination from `stigma’, which `resides in the structure and relations of society’ and `prejudice’ which, `resides in the minds of individuals’ (Herek, 2002, p.2). In the context of race, racism is the stigma and racial discrimination is the behaviour that gives expression to that stigma. Racism is rooted in the ideology of cultural superiority and results in the “generalized and definitive valorization of biological differences, whether real or imagined, favorable for the racist, devaluing the other, with the aim to justify an aggression or privilege (Aissata De Diop, 2001). Racism is transmitted through generations and serves to rationalise the hierarchical patterning in society whereby one group dominates over other(s). Racism express itself through institutional norms, cultural values and individual or and/or collective discriminatory behaviour patterns. Race based discrimination or racial discrimination is defined in Article 1 (1) of the International Convention on the Elimination of All Form of Racial Discrimination as “... any distinction, exclusion, restriction or preference based on race, colour, descent, or national or ethnic origin which has the purpose or effect of nullifying or imparing the recognition, enjoyment or exercise, on an equal footing, of human rights and fundamental freedoms in the political, economic, social, cultural or any other field of public life”.
In recent years concern about AIDS related stigma and discrimination has grown (see Parker & Aggleton, 2002; Bharat with Aggleton and Tyrer for UNAIDS, 2001; Bharat, 1999). Parker and Aggleton’s analysis (2002) seeks to conceptualise stigma and discrimination not just as individual processes but as social and cultural phenomena linked to the actions of whole groups of people, not the consequences of individual behaviour. Further, they combine the works of Foucault (1977, 1978) which emphasise the cultural production of difference in the service of power, and the work of Goffman (1963) that relates to stigma associated with deviance, to make the point that stigma and stigmatization function at the point of intersection between culture, power and difference. Conceptualizing stigma thus implies that it is not merely an expression of individual attitudes or of cultural values but central to the constitution and continuity of a given social order. It is within such a framework that one may understand and analyse racism and racial discrimination related to HIV/AIDS status.
AIDS related stigma and discrimination are complex social processes. They are neither unique and nor randomly patterned (UNAIDS/WHO, 2001). They usually build upon and reinforce pre-existing fears, prejudices and social inequalities pertaining to poverty, gender, race, sex and sexuality, and so on. In this sense, racist attitudes and racial discrimination linked to HIV/AIDS status are only playing into, and reinforcing, already existing racial sterotypes and inequalities concerning people of colour in general. Just like other forms of stigma, AIDS related stigma also results in social exclusion, scapegoating, violence, blaming, labeling and denial of resources and services meant for the consumption of all. Research shows that it is not necessary for people to actually experience stigma directly or personally (often called, Enacted Stigma); stigma may be perceived or presumed to be there (often called, Felt Stigma) (Scambler & Hopkins, 1986). This latter type of stigma is psychologically more damaging and difficult to challenge in public (Bharat, 1999; UNAIDS, 2001). There are two other forms of stigma – courtesy stigma and self-stigma. Courtesy stigma is the stigma shared by all those associated with the stigmatized person (for eg. health care providers of HIV infected individual). Self-stigma is the stigma that is accepted and internalized by the person and used to legitamise others’ negative actions such that challenging the same becomes difficult. Instead the person self-restricts own behaviour out of a sense of vulnerability or indulges in self-blame (Bharat, 1999). Since it is primarily the disliked sectors of society – gay and bisexual men, injecting drug users, and sex workers – who have been most closely associated with the epidemic since its early onset, Herek (2002) has further differentiated between `Instrumental’ and `Symbolic’ stigmas. The former derives from fear of AIDS as a communicable and lethal illness while the latter refers to the use of AIDS as a vehicle for expressing hostility toward groups that are already stigmatized in society. Racism and racial discrimination linked to HIV status, may be categorized as `Symbolic’ stigma as the already stigmatized and marginalized racial groups are stigmatized further on account of their association with HIV. Conversely, HIV is assumed to be high among certain racial/ethnic groups on the basis of their past association with diseases such as cholera, plague, hookworm etc.(See Wailoo, 2001).
Herek (1990) has described a four part process of stigmatization on the part of a society: first, by identifying and defining the disease; second by assigning responsibility for its appearance to some person, group or thing; third, by determining whether those affected by the disease are to be viewed as innocent or guilty; and fourth, by assigning responsibility for identifying a cure or solution to another segment of society.
Race, Gender, Class and HIV/AIDS: The intersection
The linkage between race and HIV/AIDS cannot be seen in isolation from the dimensions of gender, class, and sexual orientation. As stated by Aggleton, “intersectionality is central to an understanding of how gender, race, age, sexuality combine together to determine who is infected and once infected who is able to access medications and health care” (UNAIDS/WHO, 2001). This intersectionality is what contributes to double and sometimes multiple stigmas and stigmatization of the infected. Gender differences in patterns of HIV infection vary widely around the world. In regions where the HIV transmission is mainly heterosexual, more young women are infected than men. In most of Africa infection rates among young women are at least twice that among young men (UNAIDS, 2000). In some parts of Kenya and Zambia, teenage girls have rates of 25% compared with 4% among teenage boys (UNAIDS & WHO, 1999). The gendered dimension of the HIV epidemic is closely related to patriarchal values and norms and to the fact that women bear the major consequences of the epidemic on account of loss of livelihood, economic pressures, care of sick family members and stigma of AIDS (Bharat and Aggleton, 1999; Bharat, 1999; UNAIDS, 2001). In many parts of Asia it is marriage that is posing a greater risk of HIV infection to women who themselves report monogamous behaviour. The impact of this can only be imagined in countries where marriage is a cultural ideal and near universal, as is the case in India. Gendered norms and values in these countries ordain that women accept their `lot’ in marriage and dare not question their husbands’ demand for sex. Further, they prevent women from seeking knowledge about sex, sexuality and reproductive health matters. Women and young girls thus lack the necessary information resources and the power to make choices such as, in matters of contraceptive use, by which they may reduce their risk of infection. Lack of adequate education and training for earning livelihood further marginalize women, particularly those from disadvantaged racial and ethnic backgrounds. In situations of armed conflict, migration and crisis displacement, once again it is the women who bear the consequences of sexual assault and rape. Evidence gathered from Croatia, Bosnia and Rwanda suggest how rape and sexual abuse are used as weapons of war enhancing risk of HIV and other STIs for women (Human Rights Watch, 1996).
Poverty is yet another dimension that combines with race and gender to multiply HIV related risk several times over. Worldwide the AIDS epidemic is most severe in the poorest countries and among people of colour(UNAIDS/ WHO, 1999). The reason is that conditions of poverty, hunger, powerlessness, and ignorance provide fertile ground for the spread of HIV and most Black people and other ethnic minorities live in these very conditions. Poverty increases chances of taking personal risks. For example, in Nicaragua economic hardships are making young women agree to sex with older married men (Zelaya et al, 1997) whose demand for younger, ‘clean’ women is increasing in the hope of warding off the infection of HIV. But while poverty enhances the risk of HIV, HIV also accentuates poverty. In sub-saharan Africa, for example, where labour shortage due to HIV related morbidity and mortality has cut crop production by more than 40% in affected households, the epidemic has caused a major developmental crisis (Toupouzis and de Guerny, 1999).
1 (b) Geographical Dimensions of the Problem and Trends
AIDS or the Acquired Immunodeficiency Syndrome was recognized as a global crisis by the mid-1980s. An estimated total of 40 million people are living with HIV/AIDS at the end of 2001 – 18.5 million women and 3 million children (UNAIDS, 2002). Almost 22 million people have already died of AIDS while nearly 3 million AIDS deaths were reported in 2001 alone (UNAIDS, 2002). HIV/AIDS is the fourth largest cause of death globally and the leading cause of death in Africa (WHO, 1999). Sub-Saharan Africa continues to lead with 28.1 million HIV infected people but new HIV infections as percentage of existing cases are the highest in Eastern Europe and Central Asia( 43%) and Asia and the Pacific ( 26%) as against the global average of 11% (UNAIDS, 2001).
HIV/AIDS epidemiological data is generally reported by countries and by risk groups and not by ethnicity / race due to the political sensitivity involved in doing so (PAHO/WHO & UNAIDS, 2001). It is also argued that race/ethnicity based data may further serve to perpetuate stigma linked to those groups and that in part the problem may also be a `definitional’ one with respect to racial categories (UNAIDS & WHO, 2001). However, some country specific data provides racial / ethnic dimensions of the problem. These figures may not present the true racial profiling of HIV prevalence but they are suggestive of levels of social inequalities related to race, gender and class.
Epidemiological data from the US suggest that increasingly Africa-American men and women are accounting for larger proportion of the HIV/AIDS cases. Although Afro-Americans make up for only 13% of the US population, they accounted for an estimated 54% of all new infections in 2000 and of all the women estimated to have acquired HIV in 2000, nearly 82% were African-American and Hispanic (UNAIDS, 2002, p.40). Reports also suggest that AIDS has become the leading cause of death among African-Americans aged 25 to 44 in the US (Centres for Disease Control-CDC, 2000). Among the African-American gay men, HIV prevalence rates were found to be 30% in a 6-city US survey (reported in UNAIDS, 2002, p.40). Similarly, Latinos who comprise only 9% of the US population accounted for 17% of all male AIDS cases and 21% of all female AIDS cases in 1995 (CDC, 1995). The AIDS incidence rate in mid 90s for Latino men and women was 2.5 and 6 times that of non-Latino white men and women respectively (CDC, 1995). In Canada, the proportion of reported AIDS cases has steadily increased among ethnic groups. Between 1991 and 1999, for example, the proportion of White AIDS cases declined from 88.6% to 66.1%, while a corresponding rise was registered among various ethnic groups. According to one report, of the cumulative AIDS diagnoses reported to December 1998, 78.6 were reported by ethnicity (Health Canada, 1998). This trend was found to be particularly significant after 1994 among the Aboriginal persons and among Black people. Statistics reported for Canada for the year 2000 further reveals that whereas the Aboriginals and Blacks comprise 2.8% and 2.0% of Canada’s population respectively, they accounted for nearly 9.2% and 8.3% of all reported cases of AIDS in that year (Canada Bureau of HIV/AIDS, STD and TB, 2001). In the Honduras, HIV infection among the Black Carib minority known as “Garifunas” is six times that of Honduran national average, at 8.2% in men and 8.5% in women. Among men and women in their 20s, HIV infection was reported to be a high of 16% (PAHO/WHO & UNAIDS, 2001, p.36). In Australia, significantly higher proportion of HIV infection is reported among indigenous women (26%) than among the non-indigenous women (8%) (Common Wealth of Australia, 1997). Within Europe, HIV infection rates among African people in France especially among the women, are reported to be increasing (Bungener, Marchand-Gonod, & Jouvent, 2000). In the UK Ugandan migrants are found to be the second largest group to be affected by HIV-1, after gay men (Low etal 1996).
Recent statistics also reveal a narrowing gender gap in HIV infection rates. Globally women accounted for 40% of all new infections in 2001 and of the total AIDS deaths in 2001, 37% occurred among women (UNAIDS, 2001). Within minority racial and ethnic groups too, women are found to be increasingly at greater risk of infection and targets of greater levels of stigma and discrimination. The UNAIDS report for 2002 notes that “… young, disadvantaged women (especially African-American and Hispanic) are increasingly vulnerable to infection” (UNAIDS, 2002 p.40).
In most parts of Africa too, HIV prevalence among women is climbing faster than among men. In Botswana, for example, median HIV prevalence among pregnant women increased from 38.5% in 1997 to 44.9% in 2001 while in Zimbabwe the prevalence rate rose from 29% in 1997 to 35% in 2000 (UNAIDS, 2002 p.23).
2.Empirical Data on Racism and Racial Discrimination Related to HIV/AIDS Status
As stated earlier the relationship between racism, racial discrimination and HIV/AIDS has not been explored sufficiently well. Besides anecdotal evidence and a few small scale research studies, there is no comprehensive documentation of racial discrimination linked to HIV/AIDS. The earliest racist pronouncements were in relation to “African sexuality” and the blaming of `Haitians’ in the US for being the `vectors’ of the disease (Parker & Aggleton, 2002). Although the fear seems real that documentation of such data might further polarize the international community, the significance of reliable racially disaggregated data on HIV/AIDS for developing policies and programs sensitive to race-based discrimanation cannot be underestimated. Such data can serve as advocacy tool for promoting and protecting rights of racial groups (UNAIDS/WHO, 2001).
Before discussing the available evidence on race based data linked to HIV/AIDS, it may be useful to examine the general picture of race relations in the US. Findings of a recent electronic survey (Randall, 2001) reveal that an overwhelmingly large proportion of both people of colour (92%) and Whites (79%) believe that racial minorities in the US today are routinely discriminated against. More than half the respondents (66% people of colour and 56% Whites) believed that race relations will always be a problem in the US and nearly half of them also endorsed the statement that many White people dislike minorities (56% people of colour and 45% Whites).
Throughout the world HIV/AIDS related stigma is known to have triggered a range of negative and unsupportive reactions. Various contexts - family, community, work place, health care setting – have been identified where stigma and discrimination is known to occur (UNAIDS, 2001; Malcolm et al, 1998).
In the beginning of the epidemic, travel restrictions were placed on `foreigners’ most of whom belonged to racial / ethnic, minorities. For example, African students traveling to USSR and parts of Western Europe were detained, isolated or even expelled from their university programs for reasons that included their HIV status (Sabatier, 1988). In the Gulf countries mandatory testing is followed for all foreign nationals (Solon & Berrazo, 1993) and the HIV infected foreigners continue to be denied permission to enter the US. African-Americans, in general, have reported greater levels of stigma and discrimination in the health care sector due to their HIV status compared to Whites. Some of the most common reactions reported are those of scapegoating and blaming. For example, many Haitians were harassed and stigmatized in the early period due to the belief that they were the carriers of the infection to the US (Farmer & Kim, 1991). In countries that are particularly hard hit, instances of violence and assault against HIV infected persons have been recorded. This often follows the public disclosure of one’s HIV status as happened in the case of a young community volunteer Gugu Dlamini in South Africa who was stoned and beaten to death. It is not surprising that HIV positive people fear disclosing their serostatus. In an evaluation of TASO (The AIDS Support Organisations) in Uganda, 58% of the clients reported fear of stigma as the main reason for non-disclosure of their serostatus to others (Kaleeba etal, 1997). Families and individuals are known to have gone to great extent to hide the presence of HIV infection from others in the community (Bharat, 1999). Such secrecy serves to keep the epidemic socially invisible and greatly enhances the potential of silent spread of the epidemic in the community as those infected fail to seek services to learn constructive ways of living with HIV (Lie & Biswalo, 1996).
Although direct evidence of racial discrimination due to HIV/AIDS is not so readily available, there is a plethora of research findings reporting wide health disparities among racial minorities that are inextricably related to racism and other forms of discrimination in society (WHO, 2001). Studies in the US, for instance, indicate higher infant and adult mortality due to diabetes, homicide and HIV/AIDS among Afro-Americans than among White population (Nickens, 1995). A study of 107 US cities confirmed higher disease specific mortality among African-Americans than among other groups (Williams, 1995). In Peru, provinces with a higher concentration of Afro-Peruvians such as, Piura, report higher infant mortality (93/1000 live births) compared with Lima (45/1000 live births), which has low African population (Cowater Interntional Inc; 1996). Similar sharp disparities are reported in Brazil where infant mortality among Afro-Americans is 62/1000 compared to among Whites, which is 37/1000 (FOASE, 2000). Access to health insurance too is generally poorer for racial groups. By 1986, 39% Hispanics in the USA had no coverage, a figure three times higher than that of Whites and double that of African-Americans (Bollini, 1995). In the Latin American and Carribean Region, the Afro-Venezullan population lacks health services and health workers refuse to visit due to violence (Cowater Interntional Inc; 1996). Access to modern medical technologies is generally poorer such that fewer elderly Afro-American in the US, compared to elderly White people, consult health specialists, receive less preventive care and poorer quality hospital services, and lack access to sophisticated medical technologies for heart problems etc. (Fiscella et al, 2000).
More specifically in relation to HIV/AIDS, there is some evidence to show why racial minorities may be particularly vulnerable to HIV/STIs risk. In most countries men and women from indigenous groups and racial minorities generally have fewer opportunities for schooling and employment than the majority population. Consequently there is greater gravitation towards drug abuse and paid sex work. In the US city of Baltimore, for instance, over one half of drug injectors never graduated from secondary school and 97% of these were African-Americans (PAHO/WHO & UNAIDS, 2001). Because of the lack of racially disaggregated HIV/AIDS data and because prevention services first started among White, gay men, culturally appropriate preventive services for racial minorities are fewer. This may partly explain why unsafe sex fell by a smaller margin among Black teenagers (15%) compared to White teenagers (35%) between 1988 and 1995 and why among the Hispanics, risk exposure actually increased over the same period (PAHO/WHO & UNAIDS, 2001). It is argued that ignorance may not be a reason for disparities in safe sex practices. For example, while over 95% of Garifuna men and women knew about HIV transmission, almost 40% of Garifuna men and 13% of women reported unsafe sex behaviour in the previous 6 months.
Despite insufficient direct evidence linking racial discrimination to HIV/AIDS, given wide health disparities between White majority population and the people of colour, it is not too difficult to appreciate how racism, class and gender intensify these already existing inequalities in the context of HIV/AIDS.
3. International Response
As early as 1983, 12 countries had adopted legal instruments on AIDS. By 1995 this number had increased to 120 (Paget, 1998). Legal responses, thus far, have included (i) the compulsory screening and testing of groups and individuals, (ii) the prohibition of people with HIV from certain occupations; (iii) the medical examination, isolation, detention and compulsory treatment of infected persons; (iv) limitations on international travel and migration; and (v) the restriction of certain behaviours such as IDU and prostitution (Gostin & Lazzarini, 1997). The legislatures largely reflect the conflict between protection of public health and protection of individual health. In India, for example, a Supreme Court ruling has suspended HIV positive people’s right to marry, ostensibly to protect the marital partner. But even where supportive legislation exists, fear of social exclusion and blame, prevents positive people from accessing legal action.
The resolution adopted by the 99th Inter-Parliamentary Union Conference urged parliamentarians around the globe to implement the International Guidelines on HIV/AIDS and Human Rights, particularly those dealing with public health legislation; criminal law and prison systems; anti discrimination legislation; privacy, confidentiality and ethics including in conducting research; and public and private sector standards and mechanisms for implementing the guidelines (UNAIDS/IPU, 1999).
Today HIV/AIDS is largely recognized as a human rights issue (UNAIDS, 2002). At the international level the strategy has been to integrate principles of non-discrimination, confidentiality, participation, equality and beneficence into existing international human rights instruments, national legislatures, NGO work and AIDS related research and intervention initiatives (UNAIDS, 2002).
The London Declaration on AIDS Prevention in 1988 was the first international statement to call for destigmatising HIV/AIDS. Subsequently Resolution WHA 41.24 of the 41st World Health Assembly of 1988, made recommendations to Member States to protect human rights of affected individuals. In 1989 the UN Center for Human Rights organized the first international consultation on HIV/AIDS and Human Rights. This was followed by a second consultation in 1996 in which a set of twelve International Guidelines on HIV/AIDS and Human Rights were drafted. Significantly many HR Instruments have now included `HIV/AIDS status’ under the more general phrase “Health status”. For example a General Comment adopted by the committee to monitor the International Covenant on Economic, Social and Cultural Rights, enumerates the grounds for non-discrimination in health by proscribing “any discrimination in access to health care and the underlying determinants of health as well as to means and entitlements for their procurement on the grounds of race, colour, sex , language, …birth, …health status (including HIV/AIDS) …..or other status, which has the intention or effect of nullifying or impairing the equal enjoyment or exercise of the right to health”. Further, Resolution 49/1999 of the UN commission on HR reaffirms that “……. the term `or other status’ in non-discrimination provisions in international human rights texts should be interpreted to cover health status including HIV/AIDS”. The UN commission on HR Resolution 2001/33 on `Access to medication in the context of pandemics such as, HIV/AIDS’ recognizes people’s right to highest standards of health care.
The UN General Assembly special session on HIV/AIDS, June 2001, endorsed the establishment of a Global AIDS Fund to strengthen AIDS work in developing countries and with disadvantaged populations. The UNGASS also called upon States to enact, strengthen and enforce legislation to eliminate all forms of AIDS related discrimination and confront stigma, silence and denial by 2003. The need is to recognise and make explicit the inclusion of race –based discrimination a ground for legal action
In the specific context of the racial dimensions of HIV/AIDS the World Conference Against Racism, Racial Discrimination, Xenophobia and Related Forms of Intolerance, held at Durban in September 2001, marks the strong resolve of the international community to challenge the racial linkages of the AIDS epidemic.
At the regional level, the South African Development Community’s Code on HIV/AIDS and Employment seeks to protect rights of HIV positive workers. (UNAIDS, 2000).
4. Examples of Legal Action at National Levels.
Examples of good legislative and national action to protect HR globally are beginning to emerge. In Costa Rica, a local NGO successfully helped a HIV positive college student seek combination therapy through intervention of the Supreme Court. In Venezuela, local NGOs, and lawyers and health activists were able to secure the right to free treatment for positive people under the Social Security System. (UNAIDS, 2002, p.64-65). In India, Lawyer’s Collective has successfully defended positive workers who lost their jobs due to HIV status and the Population Council’s Horizons program is helping set up HIV-patients friendly hospitals in the capital (UNAIDS, 2002, p.66).
The centre for the study of AIDS at the University of Pretoria, South Africa, is working to create an environment where it would be possible to challenge stigma, racism, and discrimination related to AIDS, (p.66). The AIDS Law Project at the University of Witwatersrand represents yet another success story of winning precedent - setting judgement on unfair dismissal of HIV positive persons and on discrimination against HIV positive prisoners (p.69).
The National Human Rights Institutions in Ghana, India and South Africa have also launched activities to promote and protect HIV related human rights in their respective countries.
Although some good understanding about the production and maintenance of AIDS related stigma and discrimination exists, there is still a need to develop a much deeper understanding of the links between racism, racial discrimination and HIV/AIDS, the dynamics and the impact of race based stigma on positive people and strategies to challenge the linkage. Specifically, the following actions are suggested –
Promote race disaggregated data to ensure that racial dimensions are recognised in all work related to AIDS research, prevention and care.
Develop a research programme to document the evidence, nature and forms of racist based AIDS related stigma; develop suitable research framework and race sensitive data collection instruments to examine the interplay of race, class, gender and sexuality in the production of AIDS stigma and its impact on quality of life of affected people and on AIDS prevention and care programs and policies.
Support government and NGO efforts to challenge racial discrimination related to HIV/AIDS by promoting the understanding and use of HR instruments of the UN and other international institutions.
Document evidence of good legislative practice and national responses countering AIDS related racist attitudes and stigma
Create awareness about anti-racist and supportive legislatures and HR instruments among all sections of society, and especially among young people using the formal educational curricula for school students and the non-formal education method for out of school youth.
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