HIV and AIDS-related stigmatization, discrimination and denial: forms, contexts and determinants
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HIV and AIDS-related
stigmatization, discrimination
and denial:
forms, contexts and
determinants
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I
HIV and AIDS-related
stigmatization, discrimination
and denial:
forms, contexts and
determinants
Research studies from
Uganda and India
United Nahont Programme on HIV/AIDS
UNAIDS
UNICEF • UNDP • UNFPA • UNDCP
UNESCO • WHO » WORLD BANK
UNAIDS/00.16E (English original June 2000)
© Joint United Nations Programme on HIV/AIDS (UNAIDS) 2000.
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All rights reserved. This document, which is not a formal publication
this work do not imply the expression of any opinion whatsoever on
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Joint United Nations Programme on HIV/AIDS (UNAIDS)
UNAIDS - 20 avenue Appia - 1211 Geneva 27 - Switzerland
Telephone: (+41 22) 791 46 51 - Fax: (+41 22) 791 41 87
E-mail: unaids@unaids.org — Internet: http://www.unaids.org
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BEST PRACTICE COLLECTION
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HIV and AIDSrelated
stigmatization,
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and denial:
forms, contexts
and determinants
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UNAIDS
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June 2000
UNAIDS
Contents
Acknowledgements
4
Foreword
5
1: Introduction
6
2: Background to the present studies
8
3: Review of relevant literature
9
Stigma and HIV/AIDS
Sources of HIV/AIDS-related stigmatization, discrimination and denial
Forms of HIV/AIDS-related stigmatization, discrimination and denial
Societal and community levels
Individual experience
Contexts of HIV/AIDS-related stigmatization, discrimination and denial
The family and community
Employment and the workplace
The health care system
Implications for enquiry
9
10
11
IT
13
14
14
15
15
16
4: Research questions
17
5: Methodology
19
Sites
India
Uganda
Methods
Indi.i
Uganda
19
19
20
20
21
21
6: Key findings
23
India
Forms
Determinants
Responses
Uganda
Forms
(Determinants
Responst.‘s
23
23
27
27
28
28
30
32
7: Thematic analysis_______
35
8: Implications for policy, programming and future research
36
References
38
HIV and AIDS-related Stigmatization, Discrimination and Denial
Acknowledgements
Prepared for UNAIDS by
Peter Aggieton
Thomas Coram Research Unit,
Institute of Education, University of London
The studies described here could not have been undertaken without the support and
commitment of many people. Anne Malcolm was responsible for conducting much
of the literature review that sets the scene for the comparative analysis. Special thanks
should go to the Principal Investigators and their teams. In India, these are Dr Shalini
Bharat (Principal Investigator) and Pravina Kukade, Paromita Roy, Shubhangi
Panhalkar, Savio Das in Mumbai, and Chitra Dhananjay, A.R. Subbarathna,
M.B. Sudha, Sanjay Govindraj and Mr Theodore in Bangalore. In Uganda, these
were Sophia Mukasa Moniko (Principal Investigator), Erasmus Otolok Tanga and
Augustus Nuwagaba. Technical support was provided by Miriam Maluwa and
Purnima Mane; all the publishing aspects were coordinated by Andrea Verwohlt; and
administrative support was given by Elizabeth Matt, Veronique Arbogast and Paula
Soper (UNAIDS, Geneva, Switzerland). Paula Hassett and Helen Thomas provided
support in London, UK.
Last but not least, thanks go to the women and men living with HIV/AIDS, their families,
lovers and friends who took the time to talk courageously and openly about their
experiences. It is only through their testimonies and accounts that we can begin to
understand HIV/AIDS-related stigmatization and discrimination. It is to them and to future
generations that this study is dedicated.
4
UNAIDS
Foreword
From the moment scientists identified HIV/AIDS, social responses of fear, denial, stigma
and discrimination have accompanied the epidemic. Discrimination has spread rapidly,
fuelling anxiety and prejudice against groups most affected as well as those living
with HIV/AIDS.
Despite numerous conferences and expert consultations, and despite the passing of
Resolution 49/1999 of the UN Commission on Human Rights prohibiting
discrimination on the basis of HIV status, relatively little is known about the causes of
these negative responses or how they can best be combated. For this reason, the Joint
United Nations Programme on HIV/AIDS provided financial and technical support to
the studies described here. Conducted by local investigators in India and Uganda,
this research offers insight into the experiences of people living with HIV/AIDS,
negative social responses encountered, and the roots of HIV/AIDS-related stigma,
discrimination and denial.
While the work described in this report does not claim to offer the last word on these
matters, it does highlight a series of practical steps that can be taken in policy,
programming and research. These studies are part of a concerted effort to rid the world
of the stigma and discrimination that hampers efforts to reduce levels of infection and
impact, in addition to providing support for people living with HIV/AIDS.
Peter Piotz MD,PhD
Executive Director
UNAIDS
5
HIV and AIDS-related Stigmatization, Discrimination and Denial
1
Introduction
It goes without saying that HIV/AIDS is as much about social phenomena
as it is about biological and medical concerns. Across the world, the global pandemic
of HIV/AIDS has shown itself capable of triggering responses of compassion, solidarity
and support, bringing out the best in people, their families and communities. But the
disease is also associated with stigma, ostracism, repression and discrimination, as
individuals affected (or believed to be affected) by HIV have been rejected by their
families, their loved ones and their communities. This rejection holds as true in the rich
countries of the north as it does in the poorer and developing countries of the south.
AIL over the world, ignorance, lack of knowledge, fear and denial have
engendered serious and often tragic consequences, denying people living with
HIV/AIDS access to treatments, services and support, as well as making it hard for
prevention work to take place. The epidemic of fear, stigmatization and discrimination
first described by Jonathan Mann (1987) has undermined the ability of individuals,
families and societies to protect themselves and provide support and reassurance to
those infected (Merson, 1993).
The London Declaration on AIDS Prevention following the World Summit
of Ministers of Health on Programmes for HIV Prevention in January 1988 was one of
the first international statements to recognize that:
6 ^Discrimination against, and stigmatization of, HIV-infected people and
people with AIDS and population groups undermine public health and
must be avoided.^
(para. 6)
In 1988, Resolution WHA 41.24 of the 41st World Health Assembly
subsequently urged Member States to foster a spirit of understanding and compassion for
HIV-infected people and those suffering with AIDS. In addition, the resolution
recommended Member States to protect the human rights and dignity of affected
individuals and population groups so as to discourage discrimination and stigmatization
in the provision of services, employment and travel.
In 1989, the United Nations Centre for I lurnan Rights organized the first
international consultation on HIV/AIDS and human rights. This forum reaffirmed the
public health rationale for the prevention of HIV/AIDS-related discrimination and
the promotion and protection of human rights in the context of HIV/AIDS - a view
reaffirmed in United Nations General Assembly resolutions in 1990 and 1991.
In late 1996, the second international consultation on HIV/AIDS and human
rights was convened jointly by UNAIDS and the Office of the High Commissioner for
Human Rights. Twelve international guidelines on HIV/AIDS and human rights were
6
UNAIDS
t
drafted at this meeting, the majority of which emphasized, once again, the need to avoid
HIV/AIDS-related discrimination and to ensure the promotion and protection of the
human rights of people living with, and affected by, HIV/AIDS.
International human rights law seeks to guarantee freedom from
discrimination on many grounds including sex, race, language, religion, political opinion,
birth or other status. In Resolutions 1995/44 and 1996/43, the UN Commission on
I Inman Rights confirmed that the phrase "other status" is to be interpreted as
incorporating health status, including HIV/AIDS. This means that discrimination against
people living with HIV/AIDS - or those perceived to be at higher risk of infection - is
legally prohibited.
Resolution 49/1999 of the UN Commission on Human Rights reaffirms that:
^Discrimination on the basis of HIV or AIDS status, actual or presumed,
is prohibited by existing international human rights standards, and 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.*)
Among its many provisions, the resolution encourages states, UN agencies,
non-governmental organizations, UN treaty bodies and inter-governmental organizations
to combat HIV/AIDS-related discrimination, prejudice and stigma and to monitor and
enforce HIV/AIDS-related human rights.
Visibility and openness about HIV/AIDS are prerequisites for the
*
successful mobilization of government and community resources to respond to
the epidemic. Because they fear stigma and discrimination, people living with
HIV/AIDS may be deterred from being open about their serostatus. This enables
governments and others to deny that there is a problem. Consultations and meetings
i
have already taken place designed specifically to review experiences and progress in
combating the kinds of stigmatization and discrimination that are serious obstacles to
prevention and care. Objectives also include sharing best practices with respect to
existing codes and legislative frameworks, and to further contribute to international
efforts ensuring that HIV/AIDS-related discrimination is reduced and its effects
ameliorated (see, for example, HRI, 1996).
Given this intensity of activity, it may be surprising to learn that relatively
little systematic research has taken place on the forms that HIV/AIDS-related
stigmatization and discrimination take, the different contexts in which they occur and
their varying determinants. Indeed, a review of the abstracts from recent regional
and international conferences on HIV/AIDS shows that the majority of papers dealing
with such concerns focus either on individual cases or experiences, or on the role of
H
non-governmental organizations in exerting pressure on governments and national
authorities to act to prevent further discrimination.
I
HIV and AIDS-related Stigmatization, Discrimination and Den i a I
2
Background to the present studies
In 1994, under the auspices of the World Health Organization's former
Global Programme on AIDS (WHO/GPA), the first steps were undertaken to develop a
general research protocol to explore these issues systematically and in some depth
(WHO, 1994). Given the relatively uncharted nature of the field, this protocol was
developed in two parts: the first offered guidelines for a country-level extended rapid
assessment of the determinants of HIV/AIDS-related discrimination, stigmatization and
denial; the second provided guidelines for more in-depth study. Central to the issues
highlighted were the following research questions:
•How are
HIV/AIDS-related stigmatization
and discrimination defined
and perceived across different societies at the individual, institutional and
policy levels?
•What forms do IIIV/AII IS-relaled stigmatization and disc rimination lake al
different stages of the epidemic and in what contexts do they occur?
•What are the main sources ol I IIV/AIDS-related stigmatization and discrimination?
•What are the responses to I IIV/AII )S-relaled stigmatization and discrimination?
•What are the most appropriate research methods for analysing and understanding
HIV/AIDS-related discrimination, stigmatization and denial?
After consultation with WHO's regional offices, three countries - India,
Uganda and Venezuela - were identified as having the capacity and willingness to
undertake extended rapid assessments along the lines outlined in the general research
protocol. In all three countries the seriousness of the epidemic among all, or certain
sections of, the population warranted the commissioning of such work. Potential
principal investigators from each country were subsequently invited to prepare local
research proposals based on the general research protocol and to submit these to
WHO/GPA for scientific evaluation and approval. The approval of national authorities
and national or local ethical review committees was sought in each case. Two studies
undertaken by the Tata Institute of Social Sciences in India (Dr Shalini Bharat, Principal
Investigator) and by TASO in Uganda (Ms Sophia Mukasa Moniko, Principal
Investigator) were subsequently funded. With the support of UNAIDS, preparatory work
commenced in 1997. Work was completed in late 1998.
This report brings together highlights from these investigations. It offers:
•a review of relevant literature;
•a statement of research questions and methods prioritized by each of the
local investigations;
•a description of main findings from work conducted in Uganda and India;
•a thematic analysis of issues recurring in each study site; and
<
•recommendations for policy, programming, practice and further research.
8
UNAIDS
3
Review of relevant literature
Prior to the development of the general research protocol, a literature
/
review was carried out. Among other issues, the protocol examined the nature, sources
and forms of HIV/AIDS-related stigmatization, discrimination and denial, key contexts
in which it occurred (including the workplace, the health care system and in relation
to travel and migration), and implications for intervention. An expanded and partially
updated version of this review has subsequently been published (Malcolm et al., 1998).
It is this version that forms the basis of discussion here.
Stigma and HIV/AIDS
I n a now classic statement, the sociologist Erving Coffman (1963) defined
stigma as a "significantly discrediting" attribute possessed by a person with an "undesired
difference". Stigma is a powerful means of social control applied by marginalizing,
excluding and exercising power over individuals who display certain traits. It is a
common response to perceived threat when escape from, or the destruction of, this threat
is impossible.
While the societal rejection of certain social groups (e.g. "homosexuals",
injecting drug users, sex workers and migrants) may predate HIV/AIDS, the disease has,
in many, cases, reinforced this stigmatization. By attributing blame to specific
individuals and groups, society can absolve itself from the responsibility of caring for
and looking alter such populations (McGrath, 1992). This is seen not only in the manner
in which "outsider" groups are blamed for having brought HIV into a country or
neighbourhood, but also in how such groups are subsequently denied access to the
services and treatment they need.
Gilmore & Somerville (1994) have described what they see as the four main
features of any stigmatizing response: the problem that initiates the reaction; the
identification of the group or individual to be targeted; the assignment of stigma to this
individual or group; and the development of the stigmatizing response. Other authors
have found it helpful to distinguish between felt and enacted stigma. Felt stigma is more
prevalent - feelings that individuals harbour about their condition and the likely reactions
of others. Enacted stigma refers to actual experiences of stigmatization and discrimination
(Scambier & Hopkins, 1986; Jacoby, 1994).
Felt stigma often precedes enacted stigma and may limit the extent to which
the latter is experienced. For example, some people living with HIV, aware that many
people with HIV/AIDS have been treated badly by others, may conceal their serostatus.
To the extent that they are successful in "passing" as non-infected, such individuals may
9
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f’l
HIV and AIDS-related Stigmatization, Discrimination and Denial
limit the amount of enacted stigma prevalent in a society or community - at least in
the short term.
Sources of HIV/AIDS-related stigmatization,
discrimination and denial
An historical and sociocultural perspective may be helpful
in
understanding the negative reactions triggered by HIV/AIDS. In previous epidemics, the
real or supposed contagiousness of disease has resulted in the isolation and exclusion
of infected people (Volinn, 1989; Gilmore & Somerville, 1994). Sexually transmitted
diseases in particular are notorious for triggering such socially divisive responses and
reactions (Carrara, 1994; Goldin, 1994).
From early in the AIDS epidemic, a series of powerful metaphors were
mobilized which serve to reinforce and legitimate stigmatization. These include
HIV/AIDS as death (e.g. through imagery such as the Grim Reaper); HIV/AIDS as
punishment (e.g. for immoral behaviour); HIV/AIDS as a crime (e.g. in relation to
innocent and guilty victims); HIV/AIDS as war (e.g. in relation to a virus which needs
to be fought); FIIV/AIDS as horror (in which infected people are demonized and feared);
and HIV/AIDS as "otherness" (in which the disease is an affliction of those set apart).
Together with the widespread belief that HIV/AIDS is shameful (Omangi, 1997), these
metaphors constitute a series of "ready-made" but highly inaccurate explanations that
provide a powerful basis for both stigmatizing and discriminatory responses. These
stereotypes also enable some people to deny that they personally are likely to be infected
or affected.
People living with HIV/AIDS are seen as ignominious in many societies.
Where the infection is associated with minority groups and behaviours (for example,
people living
with
homosexuality), HIV/AIDS may be linked to "perversion" and those infected punished
(Mejia, 1988). In individualistic societies, HIV/AIDS may be seen, as the result of personal
irresponsibility (Kegeles et al., 1989). In yet other circumstances, HIV/AIDS is seen as
HIV/AIDS are
bringing shame upon the family and community (Panos, 1990; Warwick et al., 1998).
seen as
The manner in which people respond to HIV/AIDS therefore varies with the ideas and
ignominious in
are by no means inevitable, they not infrequently feed upon and reinforce dominant
many societies
resources that society makes available to them. While negative responses to HIV/AIDS
ideologies of good and bad with respect to sex and illness, and proper and improper
behaviours (Warwick et al., 1998).
De Bruyn (1999) has recently identified five factors as contributing to
HIV/AIDS-related stigma:
•the fact that HIV/AIDS is a life-threatening disease;
•the fact that people are afraid of (ontra( ting 111V;
• the disease's association w ith beha\ iours (sue h as sex between men and injecting
drug use) that are already stigmatized in many soc ieties;
•the fact that people living with I ll\ AIDS are often thought of as being responsible
for having contracted the disease;
10
i
UNAIDS
• religious or moral beliefs that lead some people to conclude that having HIV/AIDS
is the i(‘suit of a moral fault (such as promiscuity or "deviant" sex) that deserves
punishment.
f
HIV/AIDS-related stigmatization causes resources essential to preventing
infection to be displaced. People are victimized and blamed, social divisions are
reinforced and reproduced, and new infections continue to emerge as long as people
misread the nature of the epidemic and its causes. More importantly, while negative
responses of stigmatization and discrimination seemingly give cohesion to societies and
communities, they lead to greater instability in the long term. The social categories
and barriers that have been constructed around it cannot contain HIV/AIDS. It requires
a more effective means of prevention than this.
Forms of HIV/AIDS-related stigmatization,
discrimination and denial
There are several levels at which HIV/AIDS-related discrimination,
stigmatization and denial may be experienced and felt. These include societal and
community levels, in addition to the experience of individuals.
Societal and community levels
Societally, laws, rules, policies and procedures may result in the
stigmatization of people living with HIV/AIDS. A significant number of countries have
enacted legislation with a view to controlling the actions of HIV/AIDS-affected
individuals and groups (Tomasevski et al., 1992). These laws include legislation for:
•the compulsory screening and testing of groups and individuals;
• the prohibition ot people living with HIV/AIDS from certain occupations and types
ot employment;
•the medical examination, isol.ilion, detention and compulsory treatment of
infected persons;
•limitations on international travel and migration;
•the restriction of certain behaviours such as injecting drug use and prostitution
(Gostm & Lazzarini, 1997).
International experience now shows that such measures serve only to
increase and reinforce the stigmatization of people living with HIV/AIDS and those at
greatest risk of contracting the virus. In many countries, discriminatory practices such
as the compulsory screening of certain populations or "risk groups" cause both the
further stigmatization of such groups and a misplaced sense of security among those
who do not see themselves as belonging to these sections of the population. A recent
review has, moreover, pointed to the gaps between more liberal national policies and
the application of these policies and principles in practice (Gruskin, Hendricks &
Tomasevski, 1996). Even where supportive legislation exists, its application may be
partial, uneven or ignored.
11
HIV and AIDS-related Stigmatization, Discrimination and Denial
Restrictive and coercive measures - frequently enacted to "protect" society
from infection - discriminate against, or exclude, those who are already infected. Laws
that insist on the compulsory notification of HIV/AIDS cases and the restriction of a
person's right to anonymity and confidentiality, as well as the right to movement of those
infected, have been justified on the grounds that the disease constitutes a public health
emergency (Manuel et al., 1990). While with other infectious diseases such responses
may be justifiable, in the case of an already highly stigmatized condition such as
HIV/AIDS disease they result in punitive measures that further discriminate against people
living with HIV/AIDS and may drive those infected, and those most vulnerable, further
underground (Gostin & Lazzarini, 1997).
the failure of
governments to
protect people
living with
HIV/AIDS from
discrimination
is a violation
of their
human rights
Perhaps in consequence, numerous countries have now enacted legislation
to protect the rights and freedoms of people living with HIV/AIDS and to safeguard them
from discrimination (Mann, Tarantola & Netter, 1992; Mann, Tarantola & Netter, 1996).
Much of this legislation has sought to ensure the right to employment, education, privacy
and confidentiality, as well as the right to information access, treatment and support.
However, the failure of governments to protect people living with HIV/AIDS from
discrimination, through legislation or through the active enforcement of such legislation,
is a violation of their human rights. The apathy of some governments in providing
effective systems of prevention, treatment and care may also arise from more deep-sealed
stigmatization at a societal level.
Governments and national authorities contribute to HIV/AIDS-related
stigmatization in other ways. They may, for example, cover up and conceal cases or fail
to maintain reliable and transparent reporting systems (Milner, 1991; Whiteside, 1993).
Ignoring the existence of HIV/AIDS, neglecting to respond to the needs of those living
with HIV infection, and failing to acknowledge burgeoning epidemics in the belief that
HIV/AIDS "can never happen to us" are some of the most widely reported responses of
denial (Daniel, 1991; Milner, 1991). This denial fuels stigmatization by making those
few individuals acknowledged to have HIV/AIDS appear abnormal and exceptional.
They do little to enable people to develop a more realistic appreciation of individual
vulnerability, and contribute to a vulnerability to the epidemic (Mann, Tarantola & Netter,
1996; UNAIDS, 1997).
Stigma and discrimination, both real and perceived, may also arise from a
variety of community-level responses to HIV/AIDS. The harassing and scapegoating of
individuals suspected of being infected or of belonging to a particular group has been
widely reported. It is often stimulated by the need to blame and punish and can, in
extreme circumstances, extend to acts of violence and murder (Nardi & Bolton, 1991).
Attacks on men who are presumed gay have increased in many parts of the world, and
have been associated with the growing HIV/AIDS epidemic. Sex workers and street
children in Brazil have likewise been singled out for violence and abuse (Peterson, 1990;
Byrne, 1992). HIV/AIDS-related murders have been reported in countries as diverse as
Brazil, Colombia, Ethiopia, India, South Africa and Thailand (Panos 1990; AFAO, 1997).
In December 1998, Gugu Dhlamini was stoned and beaten to death by neighbours in
12
*
UNAIDS
her township near P
Durban, South Africa, after speaking out openly on World AIDS Day
about her HIV status.
Individual experience
People's experience of HIV/AIDS-related stigmatization and discrimination
is affected by commonly held beliefs, forms of societal stigmatization, and factors such
as the extent to which individuals are able to access supportive networks of peers, family
and km. It may also be influenced by the stage of the epidemic and whether individuals
feel they can be open about their serostatus, age, gender, sexuality and social status among a host of other variables.
Overall, the negative depiction of people living with HIV/AIDS reinforced by the language and metaphors used to talk and think about the disease has reconfirmed fear, avoidance and the isolation of affected individuals and, in some
cases, friends and families. In a highly stigmatizing environment, people may withdraw
from society as a means of self-preservation. This isolation can extend to exclusion from
social and sexual relationships and - in extreme circumstances - has led to premature
death through suicide or euthanasia (Gilmore & Somerville, 1994; Hasan et al., 1994).
More often, however, stigmatization causes a kind of social death in which individuals
no longer feel part of civil society, and are no longer able to access the services and
support they need (Daniel & Parker, 1990).
the impact of
Who to tell, how and when, can be a potential source of fear and anxiety
among many people living with HIV/AIDS and may prevent individuals from
accessing treatment and care (Moynihan et al., 1995; Omangi, 1997). Even where
laws have been enacted to protect the rights and confidentiality of people living with
HIV/AIDS, few people are prepared to litigate in case their identity will become
widely known. Those who are identified as belonging to marginalized and/or minority
groups may also worry about the reactions of others, regardless of their serostatus,
Fear of telling family members about their homosexuality has recently been cited by
HIV/AIDS
7
'
S°me Mexican men as eclu3l to the fear of revealing their serostatus (Castro et al.,
1998a; 1998b).
on women is
particularly
acute
The impact of HIV/AIDS on women is particularly acute. In many
developing countries, women are already economically, culturally and socially
disadvantaged and lack equal access to treatment, financial support and education. Being
outside the structures of power and decision-making, they may be denied the opportunity
to participate equally within the community and may be subject to punitive laws, norms
and practices exercising control over their bodies and sexual relations. In a number of
societies, women are erroneously perceived as the main transmitters of sexually
transmitted infections (STIs), which may be referred to as "women's diseases" (de Bruyn,
1992). Together with traditional beliefs about sex, blood and other kinds of disease
transmission, these perceptions provide a fertile basis for the further stigmatization of
women within the context of HIV/AIDS (Ingstad, 1990; Peterson, 1990; Mushingeh,
Ghana & Mulikelela, 1991; Thant, 1993).
13
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i
HIV and AIDS-related Stigmatization, Discrimination and Denial
i
some women
prefer to
remain
ignorant of
their serostatus
or keep it
secret
•
I
There is clear evidence from recent UNAIDS-supported studies of
household and community responses to HIV/AIDS in developing countries (Warwick et
al., 1998; Aggieton & Warwick, 1999) that seropositive women are likely to treated very
differently from men. Whereas men are likely to be "excused" for the behaviour that
resulted in their infection, women are not. In India, for example, the husbands who
infected them may abandon women living with HIV/AIDS. Rejection by wider family
members has also been reported as common (Bharat & Aggieton, 1999). In some African
countries, women whose husbands have died from AIDS-related infections have been
blamed for the death. Remaining relatives may also evict the surviving spouse from her
home (Henry, 1990). Fearful of such situations, some women may prefer to remain
ignorant of their serostatus or may keep it a secret.
Perhaps in consequence, individual denial of risk and vulnerability is not
an uncommon response to the epidemic. Such denial may manifest itself in self
distancing from the problem and, in extreme cases, can result in people misperceiving
their vulnerability. Denial can also discourage voluntary testing among many people,
particularly among members of especially vulnerable groups. This, in turn, may increase
the potential risk of HIV transmission within the community (Lie & Biswalo, 1996). Such
action undermines prevention, care and support.
Contexts of HIV/AIDS-reloted stigmatization,
discrimination and denial
■
I IlV-related stigmatization, discrimination and denial may appear in a
variety of contexts. Central among those are the family and local community,
employment and the workplace, and the health care system.
The family and community
In the majority of developing countries, families are the primary care-givers
to sick members. There is clear evidence of the important role that the family can play
in providing support and care for people living with HIV/AIDS (World Bank, 1997;
Warwick et al., 1998; Aggieton & Warwick, 1999). However, not all family response is
positive. Infected and affected family members may still be stigmatized and discriminated
against within the home. There is also mounting evidence that women (Bharat &
Aggieton, 1999) and non-heterosexual family members (Castro et al., 1998a; 1998b) are
more likely to be badly treated than children and men.
The family's efforts to "manage" stigmatization within the wider community
also have consequences for quality of care. Families may shield affected members from
the wider community by keeping them within the house or by protecting them
from questioning (Lwihula et al., 1993). The extent to which such strategies are successful
may depend upon the wealth of the household concerned and its capacity to provide
care without calling upon other community members for support.
Fear of rejection and stigmatization within the home and local Community
14
UNAIDS
f
may prevent people living with HIV/AIDS revealing their serostatus to family members
(McGrath et al., 1993). Families may reject seropositive members not only because
of the stigma associated with HIV/AIDS, but also because of the connotations of
homosexuality, drug use and promiscuity that HIV/AIDS carries (Panos, 1990; Misra,
1999;Mujeeb, 1999).
Employment and the workplace
While HIV is not readily transmitted in the majority of workplace settings,
the supposed risk of transmission has been used by numerous employers to terminate
or refuse employment (see, for example, Barragan, 1992; Gostin, 1992; Panos, 1992;
Shisam, 1993; Hasan et al., 1994; Omangi, 1997). There is also evidence that where
people living with HIV/AIDS are open about their serostatus at work they are likely to
experience stigmatization and ostracism by others (Panos, 1990; Gostin, 1992; Gostin
& Lazzarini, 1997).
Pre-employment screening takes place in many industries - particularly
in countries where the resources for testing are readily available and affordable. In poorer
countries screening has also been reported as taking place, especially in industries where
health benefits are available to employees (Parker, 1991; Jackson & Pitts, 1991). Employersponsored insurance schemes providing medical assistance and pensions for employees
have come under increasing pressure in countries that have been seriously affected by
HIV/AIDS. Some employers have used this pressure to deny employment to people living
with HIV/AIDS (Whiteside, 1993; Williams & Ray, 1993).
Only a very few companies in developing countries appear to have
developed strategies to combat fear, stigma and discrimination in the workplace (see
Hughes, 1988, for example), and an equally small number have begun to define the
responsibilities of employers towards employees with HIV/AIDS (Jackson & Pitts, 1991;
Bezmalinovic, 1996).
The health care system
many reports
reveal how
individuals are
stigmatized
Many reports reveal the extent to which individuals are stigmatized and
discriminated against by the health care system. Numerous accounts also proliferate of
withheld treatment (see, for example, AIDS Bhedbhan Virdhi Andolan, 1993; Carvalho
et al., 1993; Panebianco et al., 1994); non-attendance of hospital staff to patients left lying
in their beds (see, for example, Daniel & Parker, 1990; Ogola, 1990; Masini & Mwampeta,
1993); HIV testing without consent, breaches of confidentiality, and denial of hospital
facilities and medications (see, for example, Panebianco et al., 1994).
and
discriminated
against by the
health care
system
Contributing to such responses are ignorance and lack of knowledge
about HIV/AIDS transmission (Kegeles et al., 1989; Herek & Capitano, 1993; Herek et al.,
1998); fear (Blendon & Donelan, 1988; Tesch, Simpson & Kirby, 1990; Rosasco
Dulato, 1992); moralistic assumptions of guilt (Cole, Zhang & Chen, 1993; Masini &
Mwampeta, 1993); and the perceived incurability of HIV/AIDS. All of these conspire to
make it appear pointless to offer good-quality care.
15
HIV and AIDS-related Stigmatization, Discrimination and Denial
Lack of confidentiality has been rept'atedly cited as a particular problem
in health care settings. Wide variations in practice exist between countries, and between
health care facilities within countries. In some settings signs have been placed near
t’j
people living with HIV/AIDS with words such as "HIV-positive" and "AIDS" written on
them. Elsewhere, registers of HIV-positive people have been compiled and their names
released to media and police without permission (Panos, 1990; Singh, 1991).
Principles of confidentiality also vary between countries and cultures. In
some places, for example, confidentiality may be less an individual issue than
a community and collective concern. The term "shared confidentiality" describes a
situation where family and community members feel they have the right to know the
serostatus of family members, neighbours and friends (Campbell et al., 1997).
Implications for enquiry
The above are not the only settings in which HIV/AIDS-related
stigmatization and discrimination take place. It should be clear that responses in one
setting (e.g. the hospital and health care setting) may have consequences for the way in
which people react in others (e.g. at work or at home). We need to examine more closely
the fields in which stigmatization occurs, the forms that HIV/AIDS-related discrimination
takes, individual, social and institutional determinants, and the responses to which
stigmatization gives rise. Only by understanding more about such processes will it be
possible to develop the kinds of programmes and interventions that will be successful in
preventing HIV/AIDS-related stigma and the negative consequences to which it gives rise.
16
|
UNAIDS
i
4
Research questions
As stated earlier, a common core of research questions underpinned the
investigation. To ensure that research remained sensitive to local priorities and needs, these
were modified according to issues of particular local relevance.
The study in India therefore examined:
•What are the various direct and indirect forms of expression of HIV/AIDS-related
stigmatization, discrimination and denial in India, and how do these forms vary
across different city locations?
•What are the different contexts, namely kinship relations, work settings or caring
settings, in which discrimination and stigmatization occur, and how do such
expressions vary according to the contexts and level at which they occur?
• What are the dominant individual, socioeconomic or cultural factors that influence
or contribute to HIV/AIDS-linked stigmatization, discrimination and denial?
■
1
•What is the overall status of HIV/AIDS-related stigmatization and discrimination on
the national agenda regarding human rights debate, public health issues and existing
social tensions and conflicts?
•What is (he role played by policies, media and advertising to support or contain
HIV/AIDS-related stigmatization and discrimination? What has been the role of non
governmental organizations?
•What are the outcomes of HIV/AIDS-related stigmatization, discrimination and
denial, and can some of these experiences be used in interventions?
(Source: Tata Institute of Social Sciences application for funding, dated 25/10/95)
the study in Uganda aimed to give special attention to:
•Analysing the different forms of HIV/AIDS-related stigmatization, discrimination
and denial in contrasting sites within Uganda:
What are the different forms of HIV/AIDS-related stigmatization,
discrimination and denial in specified study areas? How are these
forms defined in various cultural, economic and social contexts? Do
the different stages of the epidemic influence the forms of HIV/AIDS-
related stigmatization, discrimination and denial? How are these
different forms manifested at the individual, family, institutional and
policy levels?
•Establishing the factors that influence different forms of HIV/AIDS-related
stigmatization, discrimination and denial:
17
i?
HIV and AIDS-related Stigmatization, Discrimination and Denial
i
i;.!
!
What
are
the origins of
HIV/AIDS-related
stigmatization,
discrimination and denial? What are the specific factors responsible
for enhancing these forms? What is the relative impact of factors
influencing HIV/AIDS-related stigmatization, discrimination and
denial? How does the impact vary across different cultural, social
and economic settings?
•Assessing the various responses to which HIV/AIDS-related stigmatization,
discrimination and denial give rise:
What has been the response of people living with HIV/AIDS to
stigmatization, discrimination and denial? What has been the response
of affected families and communities; and of institutions such as
education, health ( are and employment systems? I low has the legal
and judicial system addressed issues related to stigmatization,
discrimination and denial?
(Source: TASO application for funding, dated 29/7/96)
!•
I
18
UNAIDS
5
Methodology
Sites
India
Given that the forms and determinants of HIV/AIDS-related stigmatization,
discrimination and denial vary according to context, principal investigators in India and
Uganda were encouraged to identify two or more sites from which data might be
collected.
In India, investigators intended to collect data in three contrasting
locations: Mumbai, where the impact of HIV/AIDS is particularly severe; and New
Delhi in the north of the country and Bangalore in the south - both cities in which
numbers of cases of HIV infection are rising rapidly. Given the tight time-frame for
the preliminary work, it was possible to conduct in-depth work in only two of these
locations: Brihan Mumbai or Greater Mumbai in the state of Maharashtra and
Bangalore in the state of Karnataka. These cities differ dramatically from one another:
I
Mumbai, well established as the financial capital of India, and Bangalore, rapidly
developing following the introduction of new technology. In the words of the Principal
Investigator:
i 6Referred to as the 'metaphor for modern India', Mumbai (makes) one of
the most significant contributions to the Indian economy and (is) a major
partner in the global process of development. With its ever growing
population, the 'Dream City' is a breeding ground for drug peddlers,
traders of flesh and people indulging in high risk behaviour... 5 ?
6 ^(Bangalore) once a quaint cantonment town is today a vibrant metropolis
with a cosmopolitan population... Well known for the electronic and
computer software industries, Bangalore is recognized as the Silicon Valley
of India and today has the distinction of being the fastest growing city in
South Asia. But its expansion has brought in its wake unplanned
I
development, disparities in living standards and large scale migration...
Unlike Mumbai, Bangalore has no well-demarcated red-light area. The sex
trade is spread all over the city and is mainly street based. 9 ?
Because of prior reporting of significant levels of HIV/AIDS-related
stigmatization, discrimination and denial in the workplace, in the health care system
and within the home and community, it was decided to restrict the focus of the
investigation to these three settings. Much valuable contextual data relevant to the latter
two settings existed from an earlier study of household and community responses to
HIV/AIDS supported by WHO/GRA (Bharat, 1995).
I
r
19
HIV and AIDS-related Stigmatization, Discriminafion and Denial
Uganda
In Uganda, the study took place in two contrasting locations: Kampala
District and Mbarara District. Kampala District is the largest urban area in Uganda and
houses the capital city of the country. It is a major centre endowed with social,
professional, welfare and legal organizations and services active in the struggle against
HIV/AIDS. The district contains a heterogeneous population of different cultures, ethnic
groups and ways of life. In contrast, Mbarara District is a rural area that is relatively
homogeneous with respect to culture, behaviour and perceptions. There are far fewer
organizations providing HIV/AIDS-related services in this part of the country. It is
generally assumed that knowledge of, and awareness about, HIV/AIDS is lower in
Mbarara than in Kampala.
In Uganda, TASO's prior experience providing care and support to people
living with HIV/AIDS and their families had suggested that it would be profitable to
focus on three contrasting settings within which HIV/AIDS-related stigmatization,
discrimination and denial might be expected to manifest itself. These are the individual
and family level, the institutional and community level (including the workplace, health
care system and places of worship), and the policy level. It should be recognized,
however, that these three settings to some extent overlapped, and that responses within
one of these environments might be expected to influence those in others.
Methods
Tl-ie general research protocol for the UNAIDS studies of the determinants
of HIV/AIDS-related stigmatization, discrimination and denial had identified the
appropriateness of several different methods in the investigation of relevant issues. These
included both primary and secondary approaches to data collection and analysis.
Primary approaches included key informant and in-depth interviews with
individuals living with and affected by HIV/AIDS-related stigmatization, discrimination
and denial; focus groups in communities and settings affected by HIV/AIDS-related
stigmatization, discrimination and denial; and observation in workplace, health care and
community settings where HIV/AIDS-related stigmatization, discrimination and denial
might manifest itself.
Secondary approaches included the analysis of existing sources of
information such as newspaper, radio and television reports describing instances
of HIV/AIDS-related stigmatization, discrimination and denial; legal records and case
notes relating to relevant court cases; and national and local policies relating to
HIV/AIDS-related stigmatization, discrimination and denial. Principal investigators were,
however, given the option of choosing one method over the other (or emphasizing the
use of particular approaches) depending upon local expertise and issues examined.
20
UNAIDS
India
.
In India, key informant interviews, in-depth interviews and focus group
discussions were the main methods used to collect data. These were complemented by
case studies of individuals who reported having been subjected to HIV/AIDS-related
stigmatization, discrimination and denial; by observation of HIV/AIDS patients in health
care and other settings; and by "dummy" patient interviews. Respondents were selected
specifically so as to illuminate key issues and concerns. Given the nature of the enquiry
(an extended rapid assessment) and the absence of relevant sampling frames, no attempt
was made to utilize more representative forms of sampling.
A total of 31 key informant interviews took place in Mumbai and a further
54 in Bangalore. They included voluntary sector workers active in HIV/AIDS prevention
and care, deans and heads of hospitals, medical professionals from a range of specialities,
the heads of personnel and social welfare departments in selected industries and
companies, and experts from the fields of insurance, law and consumer rights.
In-depth individual interviews took place with 31 HIV-positive people in
Mumbai and nine of their household care-givers. In Bangalore, 13 interviews were
conducted with people living with HIV/AIDS, and five with household care-givers.
Additionally, six in-depth interviews were conducted with HIV-positive members of
socially marginalized groups in Mumbai and three in Bangalore. These groups included
hijra, gay men and women sex workers.
Twenty focus group discussions took place with hospital staff in Mumbai and
13 in Bangalore. Four focus group discussions took place with women sex workers in
Mumbai and one in Bangalore. One focus group discussion took place with hijra in
Mumbai and one in Bangalore.
Twenty-seven private clinics were selected for dummy patient interviews
in Mumbai and 13 in Bangalore. In both sites, additional contextual data were collected
from community support group members, community members, truck drivers
(Bangalore) and other groups. For a full breakdown of the sampling, see Bharat (1999).
l
I
I
I,
I
J
Uganda
In Uganda, researchers conducted an initial reconnaissance exercise in each
of the districts in which they intended to conduct the study. They sought to identify
particular areas within each district in which the study might be conducted, establish
the household concentration of people living with, and affected by, HIV/AIDS, and
identify community leaders and obtain their consent for the study. Additionally,
researchers aimed to identify local organizations working with, and providing services
for, people living with HIV/AIDS.
Eight potential categories of respondents were identified: people living with
HIV/AIDS, families affected by HIV/AIDS, counsellors, legal professionals, medical
personnel, community leaders, religious leaders, and NGO and community-based
21
§
i
HIV and AIDS-related Stigmatization, Discrimination and Denial
organization (CBO) workers. This approach allowed the study to focus on the different
factors determining HIV/AIDS-related stigmatization, discrimination and denial.
Data were collected by means of individual interviews, focus group
discussions and observation. In-depth individual interviews were held with 22 people
living with HIV/AIDS in Kampala, 20 in Mbarara, and 10 representatives of families
affected by HIV/AIDS in each of these locations. Additionally three counsellors, three
medical personnel and two community leaders were interviewed in each site. Three
religious leaders in Kampala and two in Mbarara, two legal professionals in Kampala
and one in Mbarara, and three NGO/CBO representatives in Kampala and one in
Mbarara were also interviewed.
Focus group discussions took place with two groups of people living with
HIV/AIDS (one male and one female) in Kampala and Mbarara, respectively. One mixed
focus group discussion involving people living with HIV/AIDS was held in Kampala and
two were held in Mbarara. Focus group discussions with counsellors also took place in
Kampala (1) and Mbarara (2)z and with community workers in Mbarara (1).
Observations took place in hospital environments where people living
with HIV/AIDS received care. Attention focused not only on the way in which such
individuals were received in reception areas, but also the manner in which staff
responded to their needs. Additionally, it was possible to observe how relatives and
care-givers within the home responded to people living with HIV/AIDS.
As was the case in India, sampling was carried out on the basis of awareness
of the contexts and settings in which HIV/AIDS-related stigmatization, discrimination
and denial has been documented to exist. Further details of the sampling and data
collection and analysis can be found in Mukasa Moniko, Otolok Tanga & Nuwagaba
(1998).
22
UNAIDS
i
6
Key findings
India
Forms
A wide range of different forms of HIV/AIDS-related stigmatization,
discrimination and denial were identified in the study conducted within Mumbai and
Bangalore. While the focus of the fieldwork was on stigmatization and its consequences
within the health care and employment settings, stigmatization, discrimination and denial
in intimate relationships at home, in the community and even after death (in relation to
the disposal of bodies and funeral arrangements) were also discussed. In each of these
settings, felt and enacted stigma were discerned, as well as HIV/AIDS-related
stigmatization, discrimination and denial in both overt and covert forms.
The majority of people living with HIV/AIDS who were interviewed had
learned about their serostatus either during an illness, surgery or pregnancy. Differential
treatment was reported as occurring immediately after (and sometimes even before)
disclosure was made. As Saroja, the 38-year-old HIV-positive wife of a man diagnosed
in hospital in Bangalore, recounted:
i i The staff were looking after my husband well, but after they tested his
blood for HIV their behaviour changed and they separated our vessels,
pushed him to a corner of the room and talked about us in hushed tones.
I couldn't understand why their behaviour had become so cold.5 5
The experience of the following HIV-positive person receiving treatment
for tuberculosis was typical of many others in the same hospital in Bangalore:
■I
Q
blood was tested and from that day they stopped giving me injections.
They didn't tell me why. 9 ?
In Bangalore, individuals diagnosed with HIV/AIDS in private hospitals were
frequently transferred to government hospitals where conditions and the quality of care
are often far worse. As a surgeon in a government hospital explained:
|
6 6/n private hospitals the news of HIV-positive patients once detected is
closely guarded and the patient is conveniently transferred to a
government hospital. 9 9
Likewise in Mumbai, a nephrologist attached to a private hospital said:
23
1
HIV and AIDS-related Stigmatization, Discrimination and Denio]
6 6 We are not bound by any rule to give treatment to positive patients. Let
the government hospitals take that responsibility. There is a great risk of
infection to my staff in the nephrology department, and I'm responsible
for my staff's welfare and health. ?
|t*!
ii
Elsewhere in Mumbai, a few private hospitals were reported as accepting
people living with HIV/AIDS as patients - although this acceptance came with a price.
The costs of fumigating operating theatres and labour rooms, or liberally providing
double and even triple hand gloves to staff, and an HIV/AIDS kit to all staff assisting in
surgery, amounted in some medical professionals' eyes to an indirect form of
discrimination against people living with HIV/AIDS.
During the course of the study, it was possible to identify some of the ways
in which the identify of 11IV positive patients was marked. Medic al files in the majority
of hospitals in Mumbai are theoretically kept in the safe custody of the ward nurse, but
in at least one private hospital the identity of HIV-positive patients on the general ward
for economically poorer patients was plain for all to see. A ward boy explained:
6 6 When the patient conies to our ward, it's written on the file 'HIV' in big
letters. Anybody can see it. It's kept next to the patient. Anybody can see
it.^^
Less obvious, but nevertheless stigmatizing, practices were noted in some
Mumbai hospitals. In a private hospital, staff reported keeping tubs of disinfectant under
the beds of HIV-positive patients in which eating vessels, clothes and linen were soaked
prior to being washed separately. As one care-giver explained:
66r/)e tub is the symbol for the staff. Ite don't use any board, etc., to
declare AIDS but the tub lets us understand.
Other ways of letting staff know who is HIV-positive and who is not include
shouting to ward boys "take this HIV-positive patient for X-ray". In a public hospital in
Mumbai and in Bangalore beds are earmarked for HIV-positive patients to allow the staff
to easily identify them. As a senior doctor put it:
i 6 We never keep them in the middle of other patients because they may
also contract the infection. But we do not tell other patients about positive
patients. ?
In the course of the study, numerous accounts were elicited of medical and
nursing staff breaking the confidentiality of an HIV-positive diagnosis and telling family
members and relatives before the patient him/herself. A couple interviewed in Bangalore
revealed the following:
Husband: i iflie doctor didn't inform me. He informed my wife And
asked her to inform me.
24
UNAIDS
Wile: i Cl took my husband to the lab and got his blood tested. After two
days they called me and informed me that my husband's blood test result
was positive. My husband informed them he had illegal relationships with
a woman three years back. The doctor told me the news.) 5
In the case of less-educated or economically poor patients, other family
members might be informed first so they could help explain the situation to their relatives.
a When a young woman who is first-time pregnant is found to be HIV
positive we call her mother-in-law. We explain the report to the motherin-law and ask her to get the son also tested. These patients who come
in here are from low-income groups, and if the girls are newly married
they are really dumb and don't understand anything, so mother-in-law is
called.^ (Gynaecologist, private hospital, Mumbai)
Sometimes doctors and nurses argued that this was done so as to protect
the patient from shock and possible self-destructive behaviour. As a nurse in Mumbai
explained:
C CThe patient, as it is, is half-dead. If he is told of the test results, he might
commit suicide.} }
I
That said, there was considerable evidence that once the news had reached
relatives the outcomes were far from supportive. Young women in particular reported
being blamed and rejected by in-laws and other family members. Men were dealt with
far more supportively and positively. As Mary, a 25-year-old HIV-positive woman in
Mumbai, explained:
C ^My in-laws blame me for their son's death. They have severed all
relationships with me. They never discriminated with their son but to me
they say, 'You also have AIDS. Stay happily wherever you are.'I took great
care of their son - never felt dirty cleaning him up. But they always say
'You married him and our son got bedridden'. I have lost faith in
everybody.} 9
And as Nigamma, a 40-year-old HIV-positive widow in Bangalore,
j
pi
l
J
recounted:
6 ^My in-laws do not have a good opinion about me. They say that my
husband got this disease from me. I sometimes feel why should I live with
the insult. It is better to die. But I am living for the sake of my children.} 9
HIV-positive interviewees reported experiencing strong pressures to keep
their serostatus secret within the workplace. The shame of admitting to colleagues and
friends that you have HIV, coupled with the perceived likelihood of being dismissed on
discovery, combined to silence the majority of respondents. As one HIV-positive 23-year-
old man put it:
25
HIV and AIDS-related Stigmatization, Discrimination and Denial
6 6 You know how the society is. They want your reputation to he sullied. I
know if my HIV status comes to be known to them, they will call me
names, laugh at me, jeer at me, and I'll have no other option than to
commit suicide. I shudder at the very thought. 3 5
And as another HIV-positive respondent explained:
i iAnd who will give me a job? My health will not be good. I will not be
9
LI
able to work so they will think. What will I do for my living? So it is better
not to tell anybody. 9 9
The experience of those few respondents who had revealed their serostatus
at work was far from reassuring:
6 ^Those staff members who know about me talk about it. They point at me
and say, 'Look, he is the HIV fellow/ They... keep their distance from
me and remain aloof. I don't share my tiffin box with them any more. I
don't feel like coming to work. I remain absent for 10-15 days and then
lose wages. 9 (Tatya, 30-year-old hospital ward boy)
i
dMy colleagues didn't openly say anything to me, but the environment
was no longer the same. They avoided me. If I entered the room they
would leave abruptly. Then they asked me to keep a separate glass for
water. I decided to quit the job. 5 9 (Daljit, 25-year-old factory worker)
ij
If there was a margin of security for hospital and some factory workers who
I
were open about their serostatus, the same was certainly not true for those employed
in more marginal occupations. Ram Niwas, for example, used to sell bhel puri in an
upper-middle-class residential neighbourhood in Mumbai. He used to consult his local
doctor about his medical condition and when he came down with an STD was advised
to take an HIV-antibody test as well. He showed the positive result to his doctor who
explained it to him but also alerted the local police inspector. The next day the police
asked him to move out from the locality of the rich and influential people since he was
said to pose a risk to their health.
In the majority of businesses with whom contact was made, denial was
the order of the day. Personnel managers and welfare officers refused to acknowledge
either that HIV infection was a problem or that it might be so in the future. A local
transport company in Mumbai was reported as not having a written policy on
HIV/AIDS because ''there is not a single case of HIV reported in the company so far".
The human resource development officer in a software company in Bangalore said
in interview that:
6 iOur staff is very highly paid. They are drawn from the most reputed
institutes and we are quite sure they do not have behaviour which makes
them suspect for HIV. They are very well educated and have easy access
to sources of information, so cannot easily fall for such things.)
2(>
j
UNAIDS
t
In a small-scale private box manufacturing company in Mumbai, the
managing director, who reported believing that HIV was spread by infected water and
blood, said there were no medical facilities available for staff. If workers did not pack
the required number of boxes each day they were simply not taken on for work the next
day. If they were sick, they were sent home immediately.
Determinants
Clearly, many factors underpin the forms of stigmatization and
discrimination described above. Many of these relate to the very real fear of HIV/AIDS
that exists among both the general public and professionally qualified health care
workers. The sources of these fears are complex and include lack of knowledge and
understanding, as well as the manner in which AIDS has been reported in the national
and local media (e.g. as being highly "contagious" when in fact it is not).
ideologies of
gender result in
Other causes of stigma and discrimination have their origins deep within
Indian culture and the manner in which "sexual wrongdoing" is popularly understood,
Others - particularly those within the health care setting - appear to relate both to lack
of ^
knowledge
now*e<^8e a
about
^out HIV/AIDS, its routes of transmission and means of protection, as
well as to local beliefs about infection through closeness and proximity.
women
•
i|
j
emg olamea
Long-standing ideologies of gender that result in women being blamed for
the transmission of sexually transmitted infections - either directly as the supposed
for the
"vectors" of transmission or indirectly through failing to "satisfy" their husbands -
transmission of
inf,uence the ways in which famil,es and communities react to the seropositivity of their
members.-While seropositive men may be offered support and care, the same is unlikely
to be true for' women - many of whom are blamed for the illnesses from which they
L
Sexually
transmitted
infections
and their husbands may suffer.
Processes of stigmatization, whereby people living with HIV/AIDS are
rendered outsiders and "others", are also reinforced by the tendency for people living
with I IIV/Alt)S to make themselves invisible and Io disavow their condition. This
enables employers and others to deny that there is a problem.
Responses
Clearly, HIV/AIDS has evoked a variety of responses in the Indian context,
some of them positive, others considerably less so. At the positive end of the spectrum
are the reactions of households and families who agreed to provide care and support
for affected members. These responses, it has to be said, were relatively infrequent, but
were more likely to occur when male household members rather than women
were affected.
Much more common were responses of ostracism and rejection. The
predominant effects at the individual level were fear and withdrawal leading to secrecy
about HIV status and self-imposed social isolation. In a few cases, suicidal tendencies were
noted, and in a few other instances people living with HIV/AIDS sought to avoid
stigmatization by denying their serostatus, thereby risking transmission of infection to others.
27
*
HIV and AIDS-related Stigmatization, Discrimination and Denial
negative
responses
in the health
Negative responses in the health care setting (or the belief that there will
be negative responses) lead people to conceal their HIV status in treatment facilities for
fear of being denied care. Individuals who are sick may also delay seeking treatment
until the last moment, harming their own health in the process.
care setting
Within the workplace, widespread denial that HIV/AIDS is a problem
can lead
means the majority of companies and employers have no policies and procedures with
people to
which to respond to seropositive employees. The belief that HIV only affects
promiscuous people, and that "such types" are unlikely to work in a given location
conceal their
further contributes to institutional denial. Because of the social stigma associated with
HIV status
HIV/AIDS and in the absence of legislation and procedures stipulating how people
living with HIV/AIDS should be treated at work, many prefer to keep their serostatus
secret. This contributes to the invisibility of the epidemic and makes life more difficult
for those individuals affected.
Occasionally, however; HIV/AIDS-related stigma may trigger more positive
responses such as the altruistic actions of those who carve roles for themselves as
educators, counsellors and HIV/AIDS activists. Through their work, such individuals may
develop a collective identity and mobilize group support that results in a greater
awareness of the epidemic and more positive responses towards those affected.
Uganda
Forms
While the Ugandan Government has enacted a national multisectoral
policy on HIV/AIDS which stipulates that:
6 CaII Ugandans have individual and collective responsibility to be actively
involved in AIDS control activities in a coordinated way. The fight against
AIDS is not only directed at the prevention of the spread of HIV, but also
addresses the active response to, and management of, all perceived
consequences of the epidemic. 9
While capacity-building and non-discrimination have been highlighted as
central features of Uganda's response, there was clear evidence from data collected in
both sites that the rejection of people living with HIV/AIDS by family and community
continues. Approximately the same number of people living with AIDS in each site
reported having been rejected by their families as reported having been accepted - a
finding which initially surprised the principal investigators of the Uganda study.
Women in particular were often blamed for the death of a husband. As a
member of an all-woman focus group of people living with AIDS in Mbarara explained:
CCThe majority of old men think that it is women who spread AIDS in
families. Others think that to get AIDS one must have been promiscuous
to others. It is (seen as) a curse on the family.^
28
UNAIDS
In another focus group discussion conducted in this same site, respondents
suggested that:
4 iPeople would wish that a widow living with AIDS died sooner rather than
later so that she does not spread AIDS after she has got treatment and
looks healthy. 9 9
Legal professionals interviewed as part of the study reported that:
6 C Widows have told us many times that, after the death of their husbands,
among the consequences faced is ostracism, the children are taken away
from them, property is grabbed by the in-laws, and people mock them
that much...
Members of a women's focus group conducted in Mbarara described how:
i iOne father-in-law sold land that belonged to his deceased son, including
the plot where the widowed daughter-in-law lived. She was told to go
where she got AIDS from!5 ?
Perhaps in fear of punitive actions, some women in Kampala were reported
as deserting their sick husbands before the death as a means of avoiding reprisal
afterwards. Men participating in a focus group conducted with people living with
HIV/AIDS said:
6 Ckinship/relatives always blame their widowed in-law for having 'killed'
their son in case he dies of AIDS. Other reasons (for running away) are
that the widow fears the likely reprisal but also running away is a
demonstration of a kind of denial, not wanting to face the truth there and
then.
Occasionally, more extreme responses were noted, as in the following story,
told by other women in a focus group conducted with women infected with HIV in
Mbarara:
i ^A 20-year-old woman had got results that she was HIV positive. She had
to be put aside for crisis counselling. She had vowed to kill her children
as she had never gone with anybody else apart from her husband. 9 9
Despite the fact that legal measures have been taken against companies
that have attempted to discriminate against people living with HIV/AIDS within their
workforce, seropositive workers reported being fearful of revealing their serostatus in the
workplace. "Finger-pointing" was a frequently cited workplace response to people living
with HIV/AIDS who were open about their condition at work.
6 6Even if your boss has not shown any sign of dismissing you, the fellow
workmates talk behind your back. In this case, the boss may sack you and
29
HIV and AIDS-relafed Stigmatization, Discrimination and Denial
I
your job (is) given to a healthier person, judging from what was always
talked about you.} }
There was also evidence in the Uganda study of the mediating effects of
relative affluence on the manner in which individuals with HIV/AIDS might expect to
be treated by family and community. In rural areas in particular, families were reported
as providing support and care only as long as their livelihood and standard of living
could be maintained. As a group of women living with HIV/AIDS interviewed in
Mbarara explained:
dPWAs [people living with HIV or AIDS] live freely in families in which
they belong and experience love and care. But this is only as long as the
family has enough resources. If the resources are depleted, then the PWA
takes the blame because after all he has to die. ?
Beyond the enacted stigma and discrimination evident in the instances
described above was the felt or perceived stigma that led individuals to police their
own behaviour to prevent their serostatus becoming known to others. As one
interviewee stated:
6 ilt is not good to reveal one's serostatus because once one's friends know,
they start spreading rumours which may even reach schools where one's
children study, and obviously such children get affected. 9 9
In some cases, this self-stigmatization resulted in an individual's avoidance
of particular social settings and/or places of work. These included bars and clubs as well
as other environments in which individuals felt they might be subjected to stigmatization
and discrimination. With respect to employment, counsellors in a focus group discussion
in Kampala emphasized how they had:
.. encountered clients who have not been dismissed from their work but
who have sort of dismissed themselves due to self-stigma.^ ?
Others also saw felt stigma as triggering an uncooperative attitude as
individuals refused to accept the help and support offered to them.
6 iSome people are not very supportive because the PWA him/herself may
not be cooperative to other members (of the family). He/she may
stigmatize him/herself, hence repelling the would-be help from other
people.^ } (Focus group discussion, Mbarara)
Determinants
The writers of the report on the Uganda study identified a range of
determinants of HIV/AIDS-related stigmatization, discrimination and denial. Among the
key individual and family determinants identified were lack of knowledge coupled with
the persistence of lay or popular beliefs about HIV/AIDS. Despite years of government
publicity and work by non-governmental and community organizations, and regardless
30
UNAIDS
I
of efforts to encourage non-discrimination and social solidarity, at family and community
level, HIV/AIDS is still perceived as a condition linked to promiscuity and sexual
wrongdoing.
Among some rural people, HIV/AIDS continues to be associated with
witchcraft and curses, making ostracism and stigmatization seem legitimate, in addition
to causing individuals to be singled out for condemnation within their own
communities. As a man with HIV/AIDS participating in a focus group discussion in
Mbarara explained:
i iIn my family I ivas the first to get AIDS. At one time during funeral rites
(for another person), an announcement was made that I had got AIDS and
that I had brought a curse to the family. 9 ?
As highlighted above, the consequences of becoming infected are not the
same for women and men. Long-held ideologies and beliefs make it seem logical that,
while men may seek many partners (and receive social status for doing so), women
should limit themselves to only one. To some extent, such practices are legitimized
by the traditional marriage bond that denies women the opportunity to object when
their husbands put them at risk. The authors of the Uganda report quote from Ngugi's
(1996) work:
6 6/ knew my husband was having sex outside our marriage with several
partners but I have no power to refuse sex with him according to our
tradition. He is my husband and had paid bride wealth. I tested HIV
positive and I am bitter. And because of my socioeconomic status I cannot
just walk away.^
The similarities between the above situation and respondents' accounts in
the present study are striking. The origins of these behavioural discrepancies can be found
in traditional values and beliefs.
I -
i 6 African cultural values and value systems increase the spread of HIV even
within wedlock... Most women have continued to acquire HIV through
such biased cultural norms and values that allow extra marital sexual
relations for men.
There was clear evidence throughout the Uganda study that both
socioeconomic status and contact with community-based organizations (CBOs) could
mitigate the stigma associated with HIV and AIDS. Wealthier people were seen, for
example, as having the capacity to better manage both the flow of information relating
to affected family members and the care of affected persons - at least until AIDS-related
sickness begins to impose hard financial burdens upon individuals and the household.
In relation to contact with CBOs, respondents in both Mbarara and Kampala
reported some ambivalence to the support provided by CBO workers who arrived in
vehicles with "TASO" (or an equivalent name) emblazoned on the side.
31
ir
HIV and AIDS-related Stigmatization, Discrimination and Denial
4 iWe are happy with the services provided to us... But I feel a bit
uncomfortable when TASO staff come in their vehicles to visit me. I prefer
to come to TASO but not TASO come to my horned 9 (PWA focus group
discussion, Kampala)
Finger-pointing was not unknown in the self-help meetings organized by
some CBOs.
C i Although you could not visibly see them, whenever I went to CBO
meetings people would point fingers atf me saying my husband died of
AIDS. I had to stop going to their meetings.^
(PWA focus group
discussion, Mbarara)
Clearly CBOs need to consider carefully the way in which they make their
services available and the manner in which they work with clients if their efforts are to
have maximum benefit.
Responses
Reported responses to the stigma, discrimination and denial of IIIV/AIDS
in the Uganda study were of three main types. First, there were responses of an individual
nature. These included "coming out" to the family and community as having HIV/AIDS.
Interestingly, revealing HIV/AIDS status was found in some cases to diminish the stigma
associated with the condition. As reported in a counsellors' focus group discussion in
Mbarara,
i COne lady who had AIDS had earlier been rejected by the relatives and
the community, but after she went public and declared her serostatus,
those who had deserted her now come for assistance and guidance on
how to cope with AIDS.J ?
In this case, we can see how acknowledging one's serostatus may lessen
both the felt and enacted components of HIV/AIDS-related stigma. An additional
perceived benefit for some women was that acknowledging their seropositivity
lessened the likelihood that other men would approach them for unwanted
sexual relationships.
The power of counselling to support people in confronting I IIV/AIDS-related
stigma and discrimination is a recurrent theme throughout the Uganda study. In a focus
group discussion of people living with HIV and AIDS in Mbarara, it was reported that:
6 COnce you have been counselled, you don't mind about people's
comments and reactions against you. 9 9
However, there were others who did not gain the strength to be fully open
about their condition. For them, a more secluded and often isolated life was the only
option. The psychological rejection that derives from HIV/AIDS-related stigma can
seriously undermine the individual's feeling of self-worth and self-esteem, and in extreme
32
UNAIDS
I
circumstances it can lead to individuals dying alone from treatable conditions such as
tuberculosis.
At the family and community levels, HIV/AIDS-related stigmatization and
discriminauon were reported as having lessened as more and more families were
affected, and as responses of support had been forthcoming. In a focus group discussion
involving men living with HIV/AIDS in Kampala, it was said that:
i iMany people (families) have lost their dear ones. It is due to this reason
that they come to help with the situation and not to stigmatize and
discriminate against PWAs.^
And in a similar group discussion in Mbarara, a man reported:
t ^My family and relatives from the time I revealed my serostatus have been
supportive, sympathetic and caring. I was delighted that my family
accepted me. They advised me to go to TASO for long life, care and
support. One of them organized a TASO counsellor for me.}
However, as reported earlier, the responses women received were likely to
be very different from those accorded to men.
"Self-stigmatization" could also be a problem for some:
■
i iSome people are not supportive because the person with AIDS
him/herself may not be cooperative with other (family) members. He/she
may stigmatize him/herself hence repelling help from other people.^y
(Mixed foi us group discussion, Mbarara)
Within the institution, I IIV/AIDS-related stigmatization and discrimination
have influeiu ed the responses of many health care staff, some of whom are now reported
as taking active steps to challenge the kinds of stigma that existed early on in the
epidemic. As a key informant interviewed in Kampala put it:
dlhe attitude of health workers towards people living with AIDS and HIV
is positive (now) because almost everybody has been affected. Nearly
everyone has lost a relative, a friend or neighbourly
In Mbarara, some health workers were even planning to have money
deducted from their salaries every month to provide support for people living with
HIV/AIDS. As the administrator of the local hospital explained:
i CHealth workers in this area have a socio-medical committee specifically
aimed at addressing the social aspects of persons living with AIDS. They
are proposing to fund it by deducting some money from their own
monthly salaries.
33
■
;
HIV and AIDS-related Stigmatization, Discrimination and Denial
j
I
As mentioned earlier, efforts have been made at government level to enact
legislation to protect people living with HIV/AIDS from discrimination and to promote a
more compassionate and caring response. While an evaluation of the impact and
effectiveness of this legislation was well beyond the scope of the Uganda study, the authors
conclude that the existence of a clear legislative framework to promote the human and
civil rights of people living with HIV/AIDS is a crucial component of any programme to
lessen HIV/AIDS-related stigma and discrimination.
UNAIDS
t
7
Thematic analysis
A number of themes recur throughout both of the studies.
First, it is important to recognize that HIV/AIDS-related stigmatization,
discrimination and denial can appear in a variety of forms, at a variety of levels and in a
variety of contexts. Mapping these forms is the first step towards being able to identify their
determinants. It may be important theoretically as well as practically to differentiate
between individual, family-level, community and institutional determinants.
Second, pre-existing local cultural practices and beliefs are both
determinants and legitimators for HIV/AIDS-related stigmatization, discrimination and
denial. These beliefs frequently establish categories of person or types of behaviour that
are likely to be stigmatized (e.g. sexually "promiscuous" individuals, sex workers, drug
users and homosexuals). The advent of HIV/AIDS frequently reinforces these already
existing types of stigma, imbuing them with new and potent legitimacy.
Third, there is an important distinction to be made between "felt" and
"enacted" stigma. Felt stigma arises from the real or imagined stigmatizing responses of
others. It has an important role to play in "policing" the behaviour of people living with
HIV/AIDS, causing some to deny their serostatus, others to conceal it, and all to experience
anxiety about telling others and seeking care. The consequences of both felt and enacted
stigma undermine efforts to challenge HIV/AIDS-related stigmatization, discrimination and
denial. Both prevent people living with HIV/AIDS publicly acknowledging their serostatus
and playing their full and proper role in prevention and care.
Fourth, socioeconomic status and relative financial (and productive) security
can influence the stigmatizing process. By enabling some families to "conceal" HIV/AIDS-
affected members either within the home or in private medical facilities, some individuals
are able to avoid being overtly stigmatized. At the same time, however, it may be especially
shameful for wealthy individuals and their families to acknowledge being affected. More
generally, socioeconomic status and wealth allow people to better manage the flow of
information relating to HIV/AIDS and its impact upon family and household members.
Finally, it is clear that there is a strong gender bias in HIV/AIDS-related
stigmatization, discrimination and denial. Women and men are not dealt with in the
same way when they are infected - or believed to be affected - by HIV/AIDS. There is
evidence that men are more likely to be accepted by family and community. Women,
on the other hand, are more likely to be blamed, even when they have been infected
by their husbands in what for them have been monogamous relationships. This double
standard exacts a terrible toll on women as mothers, as daughters, as care-givers and
as people living with HIV/AIDS. HIV/AIDS-related stigma, and the discrimination to
which it leads, therefore plays a key role in intensifying gender inequalities.
35
,1
HIV and AIDS-related Stigmatization, Discrimination and Denial
I
8
Implications for policy, programming
and future research
what is
The local studies of the determinants of HIV/AIDS-ielated stigmatization,
urgently
discrimination and denial described here took the form of extended rapid assessments
needed is
of six months' duration. When originally planned, they were seen as the precursors to
subsequent enquiries involving larger numbers of respondents and a more in-depth
government
approach. Given the scope and nature of the enquiry, therefore, it would be unreasonable
anti
to expect detailed policy and programming implications to be derived from the data.
discrimination
policy
supported by a
law that will
ensure the
protection of
(HIV) positive
This was not the aim of the local investigations carried out.
However, with respect to policy development the following general points
can be made:
• Efforts to tackle I IIV/AIDS-related stigmatization, dis( riminalion and denial seem
doomed Io fail in the absence of a supporter legal framework. In the words of
the India report, "It is not enough Io spread jwsiicih’ss aboul I IIV/AIDS, ils
transmission mailers or even aboul legal rights. Whal is urgently needed is
government anti-discrimination policy supported by a law that will ensure the
protection of (HIV) positive* people's rights.'
people's rights
• Even where such laws exist, or where governments make at live efforts to combat
HIV/AIDS-related discrimination, it is vital to challenge popular myths, stereotypes
and judgements that provide the ground upon which I IIV/AIDS-related stigma can
grow. At the policy level, prevention programmes should foster tolerance and
social solidarity using, wherever possible, an approach which is non-judgemental
and not based on fear.
• In both employment and health care, discriminatory policy needs to be developed
to protect and safeguard the employment and health care rights of people living
with HIV/AIDS. Central to this must be principles of confidentiality and respect
for human rights.
•Interventions targeting discrimination need Io take place concurrent with the
establishment of a supportive legal framework that includes generic anti
discrimination laws covering health care, employment, education, housing and
social security, as well as offer live (‘nforcemenl mechanisms. Other important and
complementary activities must include efforts lo change altitudes through
communication campaigns in the media, .education and training.
36
I
UNAIDS
In future prevention, care and impact-mitigation programming:
• Interventions and activities should aim to move from providing only information
to providing services and social support aimed at countering the prejudices
and popular beliefs about HIV/AIDS that seemingly justify stigmatization and
discrimination.
•Greater attention needs to be given to the gender-biased nature of HIV/AIDS-
related stigma. Efforts should be made to address not only women's risks of
HIV/AIDS infection but their heightened vulnerability to the social stigma
associated with HIV/AIDS. In the majority of societies, a double standard exists
whereby men are permitted (and even encouraged) to have more than one partner,
while women are blamed for the consequences of this behaviour. The effects of
this double standard on women's health and well-being, property rights and rights
of access to children are serious, and need to be addressed urgently.
• Efforts must be made to tackle the forms of felt and enacted stigma that make it
difficult for people living with EIIV/AIDS to be open about their serostatus. This
secrecy causes them to withdraw from social life, and makes it difficult for them
to play a full part in prevention and to benefit from care.
With respect to future research, more needs to be learned about:
•The overt and the more hidden and institutionalized forms of HIV/AIDS-related
stigmatization, discrimination and denial that exist in different settings and at
different stages of the epidemic.
• The determinants of these different kinds of HIV/AIDS-related stigmatization,
discrimination and denial, and the circumstances and factors that lead to a
reduction in stigmatization and its negative consequences.
greater
• The pervasive discursive, cultural and structural frameworks that act as sources
attention
needs to
ot I IIV/AIDS-related stigmatization, discrimination and denial, the manner in
be given
•The processes and dynamics of exclusion that accompany HIV/AIDS-related
to the
gender-biased
nature of
HIV/AIDSrelated
stigma
which these are utilized and resisted, and their consequences for the social
exclusion of certain categories of individual.
stigmatization, discrimination and denial, including the self-exclusion associated
J!
with felt stigma and the collective exclusion associated with institutionalized forms
of discrimination.
•The positive responses to which HIV/AIDS-related stigmatization, discrimination
and denial can give rise, the circumstances in which these occur, precipitating and
supporting factors, and the key parties involved.
•The price that societies and communities pay for HIV/AIDS-related stigmatization,
discrimination and denial, its impact upon family and community, health care
systems, labour and productivity.
37
•!
HIV and AIDS-related Stigmatization, Discrimination and Denial
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Eroza, E., Hernandez, J-J. & Manca, M.C.
(1998a) Family responses to HIV/AIDS in
Mexico, Social Science and Medicine,
47(10): 1473-1484.
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40
t
The Joint United Nations Programme on HIV/AIDS (UNAIDS) is the leading advocate for
global action on HIV/AIDS. It brings together seven UN agencies in a common effort to
fight the epidemic: the United Nations Childrens Fund (UNICEF), the United Nations
Development Programme (UNDP), the United Nations Population Fund (UNFPA), the
United Nations International Drug Control Programme (UNDCP), the United Nations
Educational, Scientific and Cultural Organization (UNESCO), the World Health
Organization (WHO) and the World Bank.
UNAIDS both mobilizes the responses to the epidemic of its seven cosponsoring
organizations and supplements these efforts with special initiatives. Its purpose is to lead
and assist an expansion of the international response Io HIV on all fronts: medical, public
health, social, economic, cultural, political and human rights. UNAIDS works with a
broad range of partners - governmental and NGO, business, scientific and lay - Io share
knowledge, skills and best practice across boundaries.
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