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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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