PhD H.L (Hon. Causa), Community mobilization adviser, Joint United Nations Program on HIV/AIDS, UNAIDS
Résumé
L’auteure évoque les stigmatisations qui entourent les victimes du VIH-SIDA et les facteurs qui en découlent comme le déni et la discrimination. L’un des éléments clés qui détermine le niveau de stigmatisation de la communauté envers les personnes infectées par le virus réside dans les différentes étapes de ce parcours du combattant qu'impose la communauté au porteur de la maladie. La première étape est le déni face au SIDA. La deuxième étape correspond à l’isolement et au rejet des personnes contaminées. La troisième étape est marquée par la prise de conscience de la maladie à travers une meilleure connaissance du virus et de ses effets. Enfin, la dernière étape se caractérise par la tolérance et par une acceptation éventuelle de la communauté : le tabou est enfin brisé. L’auteure ajoute que beaucoup de pays africains ne sont encore qu'à la deuxième étape et que depuis peu, certains pays comme l’Ouganda abordent maintenant la dernière étape. Enfin, Mme Kaleeba soulève des interrogations sur les programmes encourageant les personnes infectées par le virus à s’affirmer publiquement pour contribuer à changer la mentalité et les comportements de la communauté.
Zusammenfassung
Die Autorin weist auf die Stigmen der HIV/AIDS-Opfer und die daraus entstehende Ablehnung und Diskriminierung hin. Eines der Schlüsselelemente, welches den Stand der gesellschaftlichen Stigmatisierung gegenüber HIV- Infizierten aufzeigt, liegt in einer Art Überlebenskampf, den zu durchlaufen ihnen die Gesellschaft aufdrängt. Die erste Strecke dieses wahren Hindernislaufs ist die allgemein ablehnende Haltung gegenüber der AIDS-Krankheit und den AIDS- Kranken. Die zweite Etappe beinhaltet Vereinsamung und Ablehnung der infizierten Menschen. In der dritten Etappe wird sich die Gesellschaft der Natur und der Auswirkungen des Virus, damit schliesslich auch der Krankheit selber bewusst. In der letzten Phase kommen schlussendlich doch noch Toleranz und sogar gesellschaftliches Verständnis auf: das Tabu ist endlich gebrochen. Die Autorin erläutert, dass sich viele afrikanische Länder erst in der zweiten Phase befinden, dass aber seit kurzem einige Länder wie beispielsweise Uganda die letzte Phase bereits in Angriff genommen haben. Schliesslich stellt Frau Kaleeba das
Vorgehen in Frage, HIV-infizierte Menschen zum Schritt des Coming-outs mit dem Ziele zu ermutigen, damit eine Änderung der Einstellung und des Verhaltens der Gesellschaft zu erwirken.
Resumen
La autora evoca los estigmas que rodean las víctimas del VIH-SIDA y los factores que resultan de esto como la denegación y la discriminación. Uno de los elementos claves que determina el nivel de estigmatización de la comunidad hacia las personas infectadas por el virus radica en las etapas diferentes del difícil recorrido que impone la comunidad a la persona enferma. La primera etapa es la denegación frente al SIDA. La segunda etapa corresponde al aislamiento y al rechazo de las personas contaminadas. La tercera etapa se caracteriza por la toma de conciencia de la enfermedad a través de un conocimiento mejor del virus y de sus efectos. Por fin, la última etapa es caracterizada por la tolerancia y por la aceptación eventual de la comunidad : el tabú es finalmente quebrado. La autora añade que aun muchos países africanos sólo están en la segunda etapa y que desde hace poco, algunos países como Uganda abordan ahora la última etapa. Por fin, la Señora Kaleeba se interroga sobre los programas que animan las personas infectadas a afirmarse publicamente para contribuir a cambiar la mentalidad y los comportamientos de la comunidad.
Summary
The author discusses the stigmas that surround victims of HIV/AIDS and their resulting factors such as denial and discrimination. The level of illness is one of the key elements which determines the level of stigmatization by the community towards those infected by the virus. The first stage is denial. The second stage is isolation and rejection of those contaminated by the virus. The third stage is marked by the realisation and awareness of the disease through a better knowledge of the virus. Finally, the last stage is characterized by the tolerance and possible acceptance by the community: the taboo is finally broken. The author adds that many African countries are only at the second stage, and that recently, certain countries such as Uganda are approaching the third and final stage. In her conclusion, Mrs. Kaleeba raises questions regarding the program encouraging those infected by the virus to come out publicly and contribute to changing the mentality and the behaviours of the community towards infected members of their society.
The issue of HIV/AIDS-related stigma is one of the key obstacles in accessing care for persons and families affected by this pandemic. Many people who are infected do not know their status either due to lack of facilities, lack of appropriate information or due to fear of stigma. Stigma is preventing people seeking early care for TB and other opportunistic infections, seeking counseling and testing, accessing and receiving good quality care and also preventing people from adhering to treatments that are available such as mother-to-child transmission. These examples, and there are many more, mean that unless we address stigma, we cannot hope to succeed in our efforts.
During the 1st Regional Conference on Community Home Based Care in Botswana two weeks ago study findings were presented summarising some disturbing views of community members about people with HIV. These are the views that we must keep in mind when we begin these discussions about combating stigma, as it is these views we need to challenge.
Findings from a study involving 731 people in 70 focus groups in Chobe District Northern Botswana in 1999, reported the attitudes that the focus group members expressed towards people living with HIV infection. Many stated that they felt that HIV positive people should be killed in order to stop the spread of HIV. When asked how, or who by, it was suggested that people with HIV should be burnt or that nurses could kill them. It was also suggested and supported by many people, that HIV positive people should be marked on the body, such as a tattoo under the armpit so that sexual partners could recognise when they take off their clothes. Some participants felt that people with HIV should be cared for but in isolation wards in hospitals. This raised many issues: some thought that hospitals were too congested and should not accommodate people with HIV. Others felt that people with HIV were not treated well in hospital and had heard that nurses kill patients when their condition becomes hopeless. Nurses were criticised for being rude and uncaring. One old man who tired of the whole discussion said:
"the hospitals discovered this thing so let them deal with it".
Stigma is particularly complex as it operates at many different levels and has both social and psychological aspects. Stigma has been talked about since the beginning of the HIV/AIDS epidemic but has not been adequately investigated in programmes or policies. There are many factors surrounding stigma including denial, shame, blame, fear, rejection and discrimination. So far, much of the attention has focused on the important subject of discrimination using a human rights approach. However, this has ignored the root causes of stigma and failed to inform our understanding of this complex issue.
Stigma in response to illness is not a new issue in some parts of the world. Stigma has long been associated with mental illness, physical disability, leprosy, cancer and TB However, HIV-related stigma is particularly severe as AIDS is both a life-threatening illness and also firmly linked in people’s minds to sexual behaviour. In this respect HIV-related stigma can be traced back to the early discourse on HIV, which served to further reinforce notions about deviant behaviour by focusing firmly on groups, such as sex workers, drug users and gay men.
One of the key elements which determine the level of stigma in a given community is the "Response Wave" sweeping through that community. The community response to the HIV/AIDS pandemic has been described, as happening in "Waves" and stigma is one of these waves:
• Wave 1: Denial, Wave
• 2: Fear; Stigma ; Isolation ; Rejection of those known or suspected to be HIV+;
• Wave 3: AWARENESS leading to KNOWLEDGE about modes of transmission and personal risk assessment, leading to Family acceptance; • Wave 4: Community tolerance, leading to eventual acceptance, leading to
community support, solidarity and enhancement of community care.
Many countries in Africa are still riding on the wave of fear, stigma, isolation and rejection while others are moving slowly into the wave of awareness. It is only few, such as Uganda, that have moved into the wave of tolerance, solidarity and acceptance. It is this that we must strive for.
Everyone has a role to play to combat stigma. However there are a few groups that are particularly key to engage. We need to acknowledge that many of us are playing a role in stigmatising people living with HIV, whether it is conscious or unconscious. The response of civil society to HIV/AIDS has so far been individual and more lately a family response. However, it is time to move away from a more individual and family response towards a more social and community one where responsibility is shared because we are all living with HIV, whether we are infected or affected. It is only by working together and taking collective responsibility that we can truly have an impact.
In many societies, the religious sector has reinforced stigma and denial among HIV-positive people based on moralistic judgements about inappropriate behaviour related to sex etc. In some countries, the church is still denying the burial rights of people suspected to have died from HIV. However, once sensitised and engaged, we know that the religious sector plays a key role in prevention, care and support and can contribute significantly to reducing stigma and creating a supportive environment for people affected by HIV/AIDS.
The media have a particular responsibility to provide appropriate messages when reporting on HIV. AIDS reportage has the power to help minimize the epidemic or, to do harm and worsen the problem. We have all seen the sensationalist reporting that victimises HIV-positive people and can even contribute to putting them at risk, not just of stigma but also of violence.
The lack of political will and commitment to do something about HIV is a significant factor in contributing to stigma. If political and social leaders show no concern for HIV then why should their people? By discussing HIV openly, sensitively and rationally, leaders can make people sit up and listen.
Fear of HIV-related stigmatisation by care providers, including doctors, counsellors, nurses, home-based carers and traditional healers, combined with fear of stigma from society means that many people with HIV do not feel able to access care and support services. Why do health care providers stigmatise – is it because of fear of infection or is because of judgmental attitudes?
We should not forget that care providers may be stigmatised themselves for working with HIV positive people or that they may be experiencing stigma of their own because they are HIV positive.
Stigma is a powerful and discrediting social label that radically changes the way individuals view themselves and are viewed as persons. Self-stigmatisation after diagnosis is common, positive people may initially feel guilty and apart from the rest of society. Simple activities such as peer support groups for and by people living with HIV can really help people to change the way they see themselves and learn that HIV is nothing to feel guilty or ashamed of.
Increasing numbers of programs encourage people living with HIV to be publicly open about their HIV status in an attempt to raise awareness and change behaviour. But are there mechanisms to ensure that those who do suffer as a result of going public about their status can be protected and supported? Where are the family members of those who go public? Should they not be there with their loved ones to support and encourage them? Have families been mobilized to go public about the impact of this disease on their families. What is the impact on children when parents go public? These are important questions which should be addressed.
When we speak of openness it is important to recognise that this operates on different levels.
o The first level is disclosure on an intimate level, disclosing to one’s partner and children. This is so important and where strategies such as shared confidentiality are vital
o The second is disclosure in order to access support or care. This requires some openness but is usually provided in a safe space where others are also HIV positive. Peer support groups are a key strategy in this.
o The third is public disclosure, where people with HIV are asked to give their personal testimonies and discuss publicly the impact of HIV on their lives.
We must also acknowledge the impact of HIV-related stigma on the lives of children. We urgently need to work in partnership with schools, churches and families to reduce the stigma that children are experiencing.
There is much work to be done and it is going to require a lot of commitment, energy, patience and a true spirit of working together. It is always better to light one candle than cursing the darkness.