EENET asia Newsletters : Symposium issue April 2006 Contents

Fighting the Stigma and Discrimination against People Infected or Affected by HIV and AIDS

Samuel Nugraha

Why is HIV disease or AIDS different from other diseases? Mainly because fear, lack of knowledge and prejudices create stigma and discrimination against people who are either infected or affected by it. In order to respond successfully to the AIDS epidemic it is necessary to fully understand the challenges we are facing. At the early stages, we all thought that this issue “only” affected certain groups of people within our society and our response was therefore limited. As a result we lost focus, HIV is still spreading and supportive and inclusive environments are only available to a very small number of affected/infected.

We soon realised that HIV and AIDS is the responsibility of us all. We changed our approach and became more effective in the battle against the decease as well as the discrimination and stigma that often follow.

Confidentiality is a must. It is not our right to know someone’s medical status unless we are a part of that person’s support system. However, as teachers or doctors’ and other health care providers we should always treat this information with confidentiality. When we work with HIV and AIDS issues, it is common that we discover a persons HIV status by accident or it is voluntarily shared with us by those infected or affected. Again we must keep this information to ourselves.
If a person with HIV or AIDS disclose their status to us, our first reaction will probably be pity, which is in our human nature. We will want to provide an instant solution. However, it is important that we realize that we can never fully understand exactly how it feels to have HIV or AIDS unless we are infected. This realisation will help us to support people living with HIV or AIDS. We will know our limitation and our support will be more genuine. And then hopefully the trust will be build. When the HIV or AIDS label is gone out of our head, then we will treat a person infected with HIV or AIDS like any other human being. It will never be easy for any of us to deal with HIV and AIDS and yet everywhere we turn our faces, we will find it, it is among us, therefore we are all affected by HIV and AIDS.

Access to quality education is the right of ALL children. Children infected or affected by HIV or AIDS are confronted with grief, fear and death and will need the support of an inclusive and child friendly environment in their schools and communities. This support will be crucial for their development. Teachers and counsellors will play a major role in addressing the concern of children, parents and communities related to the non-exclusion and non-discrimination of children affected or infected with HIV or AIDS as well as in a practical and realistic approach to HIV prevention.

With all our limitations regarding HIV and AIDS we must never think that we have all the answers or that we always know the best solution. We need to develop our network relating to HIV programs because to win this battle it takes everyone’s support and involvement. We often experience that we don’t know the answer but it is difficult to say: “We don’t know, when we don’t know”! But that is the only way how we can gain more knowledge, develop experience to improve our response and better contribute to the national and global effort to combat AIDS epidemic.

These thoughts have come from three years personal experience, being a former drug user and now living closely together with a person who is HIV infected, who happens to be my wife!

Samuel Nugraha is a partnership and network assistant with UNAIDS in Jakarta, Indonesia. He can be contacted on: snugraha.unaids@un.or.id or UNAIDS, Menara Thamrin, Jl. M.H. Thamrin Kav. 3, 10th Floor, Jakarta 10250, Indonesia

EENET asia Newsletters : Symposium issue April 2006 Contents