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Racism, Racial Discrimination and HIV/AIDS
Shalini Bharat
Tata Institute of Social Sciences, Mumbai, India
http://www.ohchr.org/english/issues/racism/docs/racismaids.doc
(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)
Introduction
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
(a)
Legal Regime
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).
(b)
Strategies
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.
5.
Conclusion
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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