HIV/AIDS stigma and human rights - The Centre for the Study of AIDS

86 Pages·2004·1.02 MB·English

HIV/AIDS stigma and human rights
A localised investigation of Hammanskraal
communities
A report of the Tswelopele
Research Project of the
Centre for the Study of AIDS
HIV/AIDS stigma and human rights A localised
investigation of Hammanskraal communities
A report of the Tswelopele Research Project of the Centre for
the Study of AIDS
This report and the manual were funded by NORAD through the South Africa Programme of the
Norwegian Centre for Human Rights, whose support is warmly acknowledged.
This manual was compiled by Farhana Zuberi.
Solomon Shirinda was instrumental in the data collection and the inputs from Peris Jones, Pierre
Brouard, Frans Viljoen and Mary Crewe are greatly appreciated.
The CSA would like to acknowledge the communities of Hammanskraal and people living with
HIV/AIDS for their collaboration in the project.
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Contents
Introduction 3
A rights-based approach 4
What is a (human) rights-based approach to HIV/AIDS? 4
HIV/AIDS and human rights in South Africa 6
The Tswelopele study 10
The purpose of the study 10
Study objectives 10
Methodology 11
Key findings 21
Introduction 21
The process of stigmatisation 22
Possible reasons for stigmatisation 36
Consequences of stigmatisation: human rights violations 38
Other human rights issues 46
The role of stakeholders in the community 49
Is a human rights approach at community level sufficient? 60
Introduction 60
Lack of information 60
Making rights real 61
Few organisations to assist with enforcement 62
Human rights: Solution or problem? 63
Conclusion 64
Introduction 64
Recommendations 65
Suggested ideas for future research 67
Appendix 1:
List of focus groups, key informant interviews and observation sites 68
Appendix 2:
Demographic profile for focus group participants 71
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Introduction
The link between HIV/AIDS and human rights became apparent early on in the HIV/AIDS epidemic
through the increased vulnerability of infection of some groups. HIV/AIDS is a human rights issue
because groups that are already vulnerable to human rights violations – such as women, children,
sex workers, and those living in poverty – are unable to realise their rights. This makes them more
susceptible to HIV/AIDS.
Individuals who are denied the right to freedom of association and access to information may be
precluded from discussing issues related to HIV/AIDS, participating in AIDS service organisations and
self-help groups, and taking other preventive measures to protect themselves from HIV infection.
For example, women, and particularly young women, are more vulnerable to infection if they
lack access to information, education and services necessary to ensure sexual and reproductive
health and prevention of infection. People living in poverty are often unable to access HIV care
and treatment, including anti-retroviral treatment and medication for opportunistic infections.
Thus, we see that in Africa, AIDS as a disease is particularly destructive for young black women.
The rights of people living with HIV/AIDS (PLHAs) are often violated because of their presumed
or known HIV status, causing them to suffer both the burden of the disease and the burden of
discrimination. Stigmatisation and discrimination may affect up-take of treatment, and may also
affect employment, housing and other rights. This, in turn, contributes to the vulnerability of
others to infection, since HIV-related stigma and discrimination discourages individuals infected
with and affected by HIV from contacting health and social services.
The result is that those most needing information, education and counselling will not benefit,
even where such services are available. This also inhibits an effective response. HIV prevention,
treatment, support and care strategies are hampered in an environment where human rights
are not respected. Applying a human rights-based approach to HIV/AIDS is not new. It seeks to
ensure that human rights are respected and promoted, and also seeks to mitigate the social and
economic impact of the pandemic.
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A rights-based approach
What is a (human) rights-based approach to HIV/AIDS?1
A rights based-approach to HIV/AIDS means locating the needs of those infected and affected
by HIV/AIDS in a human rights context, so that rights can be claimed and asserted. It is a
movement away from policy, which is usually at the discretion of government and/or other policy-
makers,2 towards mechanisms whereby rights can be translated into practice, and given status
and recognition in international and domestic law. As such, the rights-based approach has the
potential to be a powerful and empowering tool.
The promotion and protection of human rights reduces vulnerability to HIV infection by addressing
its root causes, lessening the adverse impact on those infected and affected by HIV, and empowering
individuals and communities to respond to the pandemic. States’ obligations to promote and
protect HIV/AIDS-related human rights are defined in existing international treaties and include,
amongst others: the right to life; the right to liberty and security of the person; the right to the
highest attainable standard of mental and physical health; the right to non-discrimination, equal
protection and equality before the law; the right to freedom of movement; the right to seek
and enjoy asylum; the right to privacy; the right to freedom of expression and opinion and the
right to freely receive and impart information; the right to freedom of association; the right to
marry and to found a family; the right to work; the right to equal access to education; the right
to an adequate standard of living; the right to social security, assistance and welfare; the right
to share in scientific advancement and its benefits; the right to participate in public and cultural
life; and the right to be free from torture and other cruel, inhuman or degrading treatment or
punishment.
Recognising the importance of a rights-based approach to HIV/AIDS, the international community
has been involved in various initiatives such as the International Guidelines on HIV/AIDS and
Human Rights,3 developed in consultation by UNAIDS and the Office of the United Nations High
Commissioner for Human Rights, with input from various stakeholders in the private and public
sectors (including NGOs, CBOs, academics, people living with HIV/AIDS, etc.), and the United
Nations General Assembly Special Session Declaration (UNGASS Declaration) which recognised
that stigma, silence, discrimination, denial and a lack of confidentiality undermine efforts to
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curb the spread and the treatment of HIV/AIDS, and impact negatively on individuals, families,
communities and nations.4
Studies have shown that common human rights violations associated with HIV/AIDS include:
• lack of access to health care services or proper treatment, including disclosure of
HIV status by health care workers without consent, and HIV testing without
informed consent5
• violation of human dignity, often through the actions of family and community6,
• gender rights violations especially related to the treatment of women by their
partners and their in-laws.7
End Notes
1 Much of this information is from the United Nations Office of the High Commissioner for Human Rights
website: www.ohchr.org/english/issues/health/hiv.
2 A policy-based approach to HIV/AIDS is for the most part about discretion. It gives policy-makers (who
are most often governments) the discretion to determine the content of these policies, the time-frames
for implementation, the beneficiaries, allocation of resources and who will be bound by such policies.
People are then dependent on the proper exercise of such discretion, but there is no mechanism in place
to test whether the exercise is free from prejudice and bias, justifiable, or if it is the best a government
can do. The rights-based approach frames the response in the language and discourse of rights, making
it no longer based on discretion, but a concrete action that can be demanded and measured. For more
information on a rights-based approach, refer to: Kisoon C., Caesar M & Jithoo T, Whose right? AIDS Review
2002, Centre for the Study of AIDS, 2002.
3 Accessible at: www.ohchr.org/english/issues/health/hiv/guidelines.htm.
4 Accessible at: www.unaids.org/UNGASS/docs/AIDSDeclaration_en.pdf. Paragraph 13.
5 See Understanding and Responding to HIV/AIDS-related Stigma and Discrimination in the Health Sector,
Pan American Organisation, 2003; and India: HIV and AIDS-related Discrimination, Stigmatisation and
Denial, UNAIDS, 2001.
6 See Uganda: HIV and AIDS-related Discrimination, Stigmatisation and Denial, UNAIDS, 2001; and India: HIV
and AIDS-related Discrimination, Stigmatisation and Denial, UNAIDS, 2001.
7India: HIV and AIDS-related Discrimination, Stigmatisation and Denial, UNAIDS, 2001; Uganda: HIV and
AIDS-related Discrimination, Stigmatisation and Denial, UNAIDS, 2001.
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HIV/AIDS and human rights in South Africa
At national level, South Africa has responded to human rights challenges in a variety of ways.
South Africa has ratified or signed the following international and regional legal human rights
instruments:
International instruments1
Instrument Date ratified
International Covenant on Economic, Social and Cultural Rights 3 October 1994 (signed)
(ICESCR)
International Covenant on Civil and Political Rights (ICCPR) 10 March 1999
ICCPR First Optional Protocol 28 November 2002
ICCPR Second Optional Protocol 28 November 2002
Convention on the Elimination of All Forms of Racial 9 January 1999
Discrimination (CERD)
Convention on the Elimination of All Forms of Discrimination 14 January 1996
against Women (CEDAW)
Convention against Torture and Other Cruel, Inhuman or 9 January 1999
Degrading Treatment or Punishment (CAT)
Convention on the Rights of the Child (CRC) 16 July 1995
Optional Protocol to the CRC on the involvement of children in 8 February 2002 (signed)
armed conflict (CRC-OP-AC)
Optional Protocol to the CRC on the sale of children, child 30 July 2003
prostitution and child pornography (CRC-OP-SC)
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Regional instruments
Instrument Date ratified
African Charter on Human and People’s Rights (ACHPR) 9 July 1996
African Charter on the Rights and Welfare of the Child (ACRWC) 7 January 2000
Constitutional rights
Furthermore, the Bill of Rights, Chapter 2 of the Constitution, lists important rights that all people
have. People must respect, protect, promote and fulfil these rights. These rights include:
• equality
• human dignity
• freedom and security of the person
• privacy
• freedom of expression
• freedom of association
• freedom of movement and residence
• freedom of trade, occupation and profession
• environment
• access to housing
• access to health care, food, water and social security, and
• access to information.
These rights are important because they protect people from being treated unfairly and discriminated
against. These rights apply equally to all people living in South Africa, including those living with HIV
and AIDS.
In South Africa, the scope and nature of human rights violations involving HIV/AIDS can be shown through
the changing emphasis of the work of the AIDS Law Project. Of 290 cases handled by the AIDS Law
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Project (ALP) between 1993 and 2000, the major distribution of cases, as calculated by Richter
(2001),2 was as follows: 24% dealt with issues to do with ‘medical testing’; 23% with ‘employer
discrimination’ and 10% with ‘insurance’. A further 23% were placed in the category ‘other’, and
included death certificates, harassment and so on. Tracking the changes over these years, Richter
suggests that the ALP’s work reflected a more general shift in discrimination. Whereas initially
the focus was ‘on getting PLWAs into spheres where they were excluded like the workplace, the
medical aid and insurance industry’, following legislative and policy changes, ‘energies were
[then] directed at obtaining the same benefits and privileges for PLWAs that other people were
entitled to in those same areas’.3
More recently there has been a highly visible emphasis upon the right to health, including treatment
for HIV/AIDS. In South Africa, the debate has culminated in the government announcing plans in
August 2003 to provide free anti-retroviral treatment (ART) at public hospitals to those who need
it. In November 2003, the government tabled its policy for the implementation of ART. There has
been some concern about the length of time that implementation of the policy has taken, and
the Treatment Action Campaign, after co-operating with the government and offering assistance
for implementation, has been threatening to take the matter to court to ensure that the policy is
implemented in a timeous manner.4
Other areas of interest and public debate in HIV/AIDS in South Africa at present include: shared
confidentiality, the need to inform partners and others at risk of the individual’s HIV status,
discrimination against employees such as domestic workers, and HIV- positive children in pre-
schools.5
Initiatives by the South African government include the provisions in the HIV/AIDS/STD Strategic
Plan for South Africa 2000-2005, which identifies human and legal rights as a priority issue. The
HIV/AIDS Directorate has appointed a human and legal rights officer to develop the priority area
further. The goals are to create a culture of openness and acceptance regarding HIV/AIDS and STDs
(sexually transmitted diseases), to ensure that the rights of people living with AIDS are protected,
and to develop mechanisms to assist people living with AIDS to enforce their rights.
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However, it is important to note that most of these studies and initiatives target urban areas in
South Africa. One motivating force is therefore to identify the scope and nature of human rights
violations in a specific community and area that can be classified as peri-urban and rural.
End notes:
1 Current as at 09 June 2004.
2 Richter, M. (2001). Aiding intolerance and fear: The nature and extent of AIDS discrimination in South
Africa, Law, Democracy and Development, 5 (2), pp. 195-211.
3 ibid
4 Operational plan for comprehensive HIV and AIDS care, management and treatment for South Africa, 19
November 2003. Available at www.dlh.gov.za
5 For more information, refer to: HIV/AIDS and Human Rights in South Africa, Centre for the Study of AIDS
and the Centre for Human Rights, University of Pretoria, 2004.
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