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RAISA YEBO December 2003
Regional AIDS Initiative of Southern Africa/VSO
December 04, 2003

Dear Friends and Partners,

STIGMA
The stigma surrounding HIV and AIDS that encourages an environment of non disclosure is one of the major factors that leads to discrimination and an inability to provide an open and enabling environment for people affected or infected by HIV and AIDS.

AIDS-related stigma (or, more simply, AIDS stigma) refers to prejudice, discounting, discrediting, and discrimination directed at people perceived to have AIDS or HIV, and the individuals, groups, and communities with which they are associated.

AIDS stigma is expressed around the world in a variety of ways, including:

  • Ostracism, rejection, and avoidance of people with AIDS (PWAs)
  • Discrimination against People Living with HIV&AIDS
  • Compulsory HIV testing without prior consent or protection of confidentiality
  • Violence against persons who are perceived to have AIDS or to be infected with HIV
  • Quarantine of persons with HIV.

Source:- http://psychology.ucdavis.edu/rainbow/html/aids.html

VSO-RAISA works with partner organisations in an attempt to combat stigma and discrimination towards individuals and their families who live with HIV and/or AIDS. One such partnership is through the linking of organisations in the on going efforts of ARASA (AIDS & Rights Alliance for Southern Africa). ZARAN (Zambia AIDS Law research and Advocacy network), a VSO Zambian partner organisation recently took a lead on providing a three day training workshop to partner organisations from Malawi, Zambia and Zimbabwe around the fundamental rights of people living with HIV and AIDS, Access to Care, HIV and AIDS and the right to Health, Challenges and Opportunities.

For a copy of the report please contact the VSO-RAISA Regional Co ordinator,Terina Stibbard –
VSO-RAISA@idasa.org.za

Through the VSO-RAISA small grant fund VSO-RAISA South Africa is supporting a photo exhibition by Carl Collison, which captures the lives of 24 people living with HIV. The objective of the exhibition is to give people living with HIV a vehicle for expression and an outlet for messages they wish to get across to the public. The exhibition aims to actively participate in breaking down stigma and prejudice against people living with HIV. (The exhibition will take place at the beginning of 2004. Exact date is to be confirmed).

NAMIBIA
We believe that prevention efforts will not succeed as long as people do not know their HIV status, do not have adequate information about the disease and how it is transmitted, do not have access to treatment and do not take responsibility for protecting themselves and others against HIV infection. The participation of people living with HIV&AIDS is therefore crucial in effective prevention efforts. The promotion and protection of human rights constitutes essential components in providing access medical care and `to preventing the transmission of HIV and reducing the impact of HIV&AIDS. The protection and promotion of human rights are necessary both for the protection of the inherent dignity of persons affected by HIV&AIDS and for the achievement of public health goals of reducing vulnerability to HIV infection, lessening the adverse impact of HIV&AIDS of those affected and empowering individuals and communities to respond to HIV&AIDS.

At VSO Namibia we also believe strongly that people living with HIV&AIDS have a right to work, and should not be excluded from employment solely on the basis of HIV status. We feel that we have an obligation to work with partner organisations and volunteers to ensure that both employee and employer have a responsibility to prevent discrimination and stigmatisation on the basis of HIV status in the workplace, and should develop and implement

work place policies on HIV&AIDS. To celebrate World AIDS Day 2003 VSO Namibia will launch its Workplace Policy for HIV&AIDS, this policy will cover volunteers and staff in Namibia and we hope that it will be used as an example in other partner organisations.

VSO RAISA Namibia has also been actively involved in the World AIDS Day Campaign as a member of the Take Control Organising committee and many volunteers are also involved in the organising and the facilitation of activities in their workplaces or communities throughout the country.

Each year on 1 December, the world commemorates World AIDS Day focussing on enhancing awareness of the millions of lives lost and forever changed by AIDS. It celebrates progress made in the battle against the epidemic and highlights the many challenges that still remain, including HIV-related stigma and discrimination.

So why do we believe it is so important here in Namibia?

People living with HIV&AIDS often face stigma, discrimination and prejudice that limit their access to services, benefits and employment. As a result, people are reluctant to know their HIV status, thus undermining both the quality of life of the person infected and the public health measures to prevent the spread of HIV&AIDS.

(For more info contact Lisa.Davidson@vsoint.org)

SOUTH AFRICA
South Africa has a huge hurdle to jump when it comes to stigma. There has been a lot of controversy about the stand of the South African government on HIV&AIDS, Gugu Dlamini has been stoned to death because she told her community she was HIV positive, Nkosi Johnson was refused access to his school because he had the HIV virus, people are being ostracised by their relatives because the family doesn’t want to be associated with HIV or AIDS, clinics give themselves any name except AIDS related, because it will keep people away, all in all stigma is throughout South African society.

Rose Madimabe, the administrator at the VSO South Africa office, tells about her own observations as a South African:

"There is a dark cloud that overshadows the lives of the community, especially in Soweto. The fear of death is rampaging among the young and old people. There is this gap, which is gradually becoming bigger and bigger. The gap between young and old. This gap is caused by the HIV& AIDS pandemic. (Mostly it affects the age group of 18-40 years)".

"There was a time when people looked at HIV&AIDS from a distance. This has changed. It is now on the doorstep of almost every family. It affects and infects the whole community. Almost 50% of the communities have experienced death in the family due to HIV&AIDS. I happen to be one of these people, who know how it is to have a member of the family dying of HIV&AIDS. My niece has just died of AIDS. It was difficult. What made it more difficult is having to respect the infected’s wish, that is not to tell people. You need help when you want to give full support to your beloved one, and the only way to get help is to talk. The problem now is how to get help if you don’t talk? She died a silent death. After my Niece died which is now a year ago, a friend (28 years old) has just died three days ago. The family only found out about the cause of death two weeks ago. The worst situation is that her young sister (23 years) is also HIV+. She also does not want people to know. This is happening in the same house. The funeral has taken place on Saturday the 29th Nov.

The question now is? Where is the starting point of educating the community about disclosing and talking about it ? Is it after death or before? If the answer is before, what about the stigma, which is already a killing portion on its own? For the funeral the family wanted to raise some kind of awareness in the community and with all the people who would be attending the funeral. There were two motivational speakers for the day. People were wearing HIV&AIDS pins, ribbons, caps and even T-shirts with red ribbons. This was a good gesture for breaking the silence.

There are many people and organisations in South Africa, who are trying to fight HIV&AIDS related stigma. One of them is GIPA (Greater involvement of people living with AIDS), which is trying to fight stigma by introducing a new principle, involvement of people living with AIDS. VSO RAISA South Africa has chosen stigma as one of their focus areas for the next four years and is looking at how to built further partnerships with organisations such as GIPA and organisations advising on HIV&AIDS workplace policies.

Another project looking at stigma is the Siyam"kela project. Siyam’kela is a joint project of the POLICY Project, the Centre for the Study of AIDS at the University of Pretoria, USAID and the Chief Directorate: HIV/AIDS and TB in the National Department of Health. The project consisted of 6 aspects: a literature review to provide a theoretical understanding of stigma; a media scan to contextualise and locate the fieldwork; a qualitative exploration of stigma experiences and perspectives through focus group discussions and key informant interviews across South Africa (conducted by Insideout Research); the development of indicators of internal and external stigma through this field work and in consultation with experts in the field; the documentation of promising practices which mitigate HIV&AIDS stigma and the development of guidelines to assist those who wish to develop interventions to reduce HIV&AIDS stigma. Copies of this literature review, the summary and the indicators document are available.

(For more info please contact Carine.Munting@vsoint.org)

MALAWI
Stigma and discrimination in our communities and workplaces are some of the major factors that are affecting the fight against HIV&AIDS. Fear of being stigmatised and discriminated prevents people to come open and declare their status and seek support. Because of this people who are affected and infected tend to be silent and go underground to continue suffering and spreading the virus.

In its effort to contribute to the fight against the epidemic, VSO Malawi encourages its partners, through volunteers, training workshops and conferences, to fight against stigma and discrimination. During Volunteer Training and employer's workshops with arriving volunteers, VSO has a session where a PLWHA gives out testimony, and with the participants to discuss issues related to stigma and discrimination in the communities and workplaces. Since September 2001, VSO Malawi has been carrying out focus group discussions with its partners to gather information about HIV&AIDS issues. One of the issues coming out clearly is to do with stigma and discrimination in workplaces, schools and communities. Among the notable issues was to do with work place policies and practices.

Looking at this, VSO Malawi put forward an agenda at the International NGO/Local NGO liaison group meeting to analyse the work based practices of these organisations with the aim of setting standards for work-based policies and practices amongst stakeholders. This agenda has been taken forward and a series of meetings have taken place regarding the work place policies and practices. The initiative is being supported by DFID who have apparently engaged a consultant to look into this aspect where the outcomes of the consultancy will be shared amongst the stakeholder. It is hoped that positive work-based policies and practices will promote openness and remove stigma and people coming forward to declare their status and seek the support of their employers.

(For more information contact Steve.Tahuna@vsoint.org)

MOZAMBIQUE
There is still a lot of discrimination against PLWHAS (People living with HIV&AIDS) in Mozambique. To a large extent this is caused by fear out of ignorance in regards to the pandemic. AIDS is seen as a highly contagious disease that can be transmitted by simple casual contact. PLWHAs’ encounter stigma not only from their families but also at work and in society at large. For those who discover that they are HIV positive the consequences of "coming out into the open" can be dramatic.

Kindlimuka an association of PLWHAS and their sympathisers has many case studies involving stigma. This often has to support victims of stigma. One of the members was first abandoned by her husband and then by her sister who took her in, when her HIV positive status was revealed.

Another member lost her job and was told she had no rights to any indemnity when the management of the organization she worked for found out about her HIV positive status. The only way to fight stigma is by ensuring that people get the right kind of information. In the first example above the sister of the HIV positive Kindlimuka member changed her attitude after she received counselling in the hospital. However, information alone is not always enough. Laws are also needed to protect against stigma.

In the second example the lady in question was only readmitted when the Organization of Mozambican Employees (OTM) and GASD-UEM (the Eduardo Mondlane University-based institution that drafted the law) went to the firm that had unfairly dismissed and enforced law 5/2002. This law protects PLWHAS against discrimination in the workplace.

RAISA joined Kindlimuka, MONASO (Mozambique’s HIV and AIDS Non-Government and Community Based Network) and other organizations on the 1st of December. The theme of the march that took place throughout Maputo was the rights of PLWHAS. This will be a step in the right direction towards fighting stigma.

(For more info contact Etelvina.Mahanjane@vsoint.org)

ZAMBIA
RAISA Zambia is fighting stigma at various levels. Recently RAISA teamed up with the German Development Service and the German Technical Assistance to Zambia in condemning stigma against People Living with HIV&AIDS. Additionally RAISA printed T-Shirts with the message" Think Positively, Act Positively."

RAISA also teamed up with the organisation Disacare to see how they could advocate for non-stigmatization of disabled people living positively with HIV&AIDS. A plan was mooted to develop a music video depicting people with disabilities living positively with HIV&AIDS. This is meant to give them a positive image.

Next week RAISA is sending two people living with HIV&AIDS to Kasempa to work with VSO volunteer teachers to help break the silence and to reduce stigma in Kasempa.

(For more info contact Maurice.Shakwamba@vsoint.org)

ZIMBABWE
The Annual ZAN (Zimbabwe AIDS Network) conference was held 25-27 November. The theme was ‘Stigma and Discrimination: Am I Doing Something…. Let’s reflect.’. Over 300 delegates attended.

Day One’s presentations focused on the theme Reducing Stigma and Discrimination. Presentations on the topic HIV & AIDS and subject groups included the National Association for the Advancement of Mixed Race Coloureds, the Zimbabwe Albino Association (gender perspective) and a representative from the Moslem Society in Zimbabwe. These three marginalised groups highlighted that as groups, which are little understood, they feel keenly the impact of stigma and discrimination, including self-stigmatisation, especially among those living and affected by HIV&AIDS. Two presentations followed from the corporate world: Standard Chartered Bank, Zimbabwe and SMART Work respectively, on Managing HIV & AIDS in the Workplace and The Workplace Policy as a tool to reduce stigma and discrimination.

On Day Two, the two main themes were Support for People Living with HIV and AIDS (PLWHA) and the Role of the Media in Addressing Stigma and Discrimination. In the first set of presentations, the focus was on supporting communities to meet the health and nutritional needs of PLWHA and creating health forums or continuum of care. The second set of presentations focused on improving the lives of PLWHA through alternative therapy, Anti retroviral support-the DART Project, the Mildmay Project and efficacy of traditional medicine in the treatment of HIV+ people.

In the discussion on the media, the focus was on the journalist perspective of whether HIV and AIDS are newsworthy. There were also presentations on multi media approaches related to going beyond awareness to action and the PSI perspective in reducing stigma and discrimination.

(For more info please contact vsozim@zol.co.zw)

RESOURCES

  • Download the AIDS stigma items from Dr. Herek's 1991 national survey
  • Download AIDS and Stigma: A Conceptual Framework and Research Agenda, the final report from a research workshop on AIDS and stigma, sponsored by the National Institute of Mental Health.
  • Stigma and Global Health: Developing a Research Agenda. Materials from an international conference held in September 2001, sponsored by the Fogarty International Center and branches of NIH, including the National Institute of Mental Health. The site includes downloadable versions of some of the main conference papers.
  • Reports from the Siyam"kela project (South Africa) on stigma. Please contact The Policy Project on 021-462 0380 or polproj@mweb.co.za or the Centre for the Study of AIDS at 012-420 4391 or ndivhuwo.masindi@up.ac.za

Visit the VSO Zimbabwe fact sheet

Please credit www.kubatana.net if you make use of material from this website. This work is licensed under a Creative Commons License unless stated otherwise.

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