I spent the past weekend in London facilitating with Fiona from ICW the PozFem  Eastern Meeting.

Once I got over the fact that I was working during the most sunny weekend of the year (and knowing England it may as well be the last!) it was a really intense and moving couple of days. We were only a small group, around 15 women. A few of us from London and the rest from places around London like Southend and Brighton. We were an amazing mix of nationalities from South Africa to Romania via Kenya, Zimbabwe, Spain and more countries that I can remember.

One of the best part of the meeting was spent taking part in the People Living With HIV Stigma Index. This is a fantastic project which will be run globally. It is set to measure in an ‘objective’ way levels of stigma in several countries. The UK is one of the first countries to take part.

One of the most exciting things about the Stigma Index is that the researchers themselves are HIV postive people who have been trained to carry out the interviews. In this way we hope that the whole process of gathering information and sharing experiences of stigma will be an empowering one. This is extremely important because talking about stigma is so painful and difficult.

Stigma manifests itself in subtle ways. So often people with HIV are still portrayed as dangerous, vectors of infections, dirty, deviant and contaminated. There is this image in the collective mind that we are a threat. I believe that the global trend of criminalizing HIV transmission is a concrete manifestation of those negative attitudes regarding HIV. For many HIV is not just a virus: HIV is a crime, HIV is a moral judgment.

I really hope that by creating  more solid evidence around stigma we will be on the right path to eliminate it.

After we completed the questionnaire we spent time discussing how stigma had affected us. We felt that the questionnaire maybe couldn’t capture the longer lasting scars of having experienced stigma. Once that sense of shame and worthlessness is installed in you, it takes a long time to heal and get the strength and the courage to really believe in ourselves. How do you measure internalized stigma and the destruction it brings to our lives?

I was very tired last night…Not just for having worked for 7 days without a break, but also because of the intensity of the emotions shared. However, I was also hopeful that what us, a small group of women, had done by shutting ourselves in a room during a sunny weekend, will make a difference.

At the end of yesterday, when  we were doing our closing round, commenting on the the lessons we  learnt, one of the women said ‘ I take away…that if Silvia can…so can I!’ It is words like this that help me overcoming me the sadness and sense of worthlessness that I have been fighting within me for so long. I have learnt that the support and feedback we give to each other are one of the greatest tool we have to overcome internalized stigma, and the chronic low self-esteem that goes with it.


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