World AIDS Day, 2010, One Voice – SARYN
We were in Busan, Korea last week, where S, a young man living with HIV, and I were presenting at the International Conference on AIDS in the Asia and Pacific on how the People Living with HIV Stigma Index had helped empower a local community that is marginalized and often forgotten in the response to HIV and AIDS in low prevalence countries like ours. In truth, I have begun to question if people living with HIV in Sri Lanka matter at all. Those who come forward are often poor; from rural communities that no longer want them (especially if their status is known) or from towns that are not large enough for them to be invisible in or hide in the shadows (especially if their status is known). Is their status known? Surely confidentiality is preserved in rural and provincial Sri Lanka? Nurses and ward staff and gardeners and cleaners are trained not to talk about who visits the STD clinic, or whose HIV test came back positive, no?
It is in this climate that the Stigma Index was conducted, and it is in this prevailing climate that one of the young men on the stigma index team realized that belonging to a network of ‘positive people’ does not mean that his life after HIV is assured. The story of empowerment that we shared was about this young man (S). He was not content like the others in his community to sit back and wait for the handouts that so many have got used to in Sri Lanka. Yes, our culture of helping the afflicted with fish and not the fishing tackle has resulted in a community that believes they are owed benefits. This is especially problematic, when regionally and globally the empowerment models for people living with HIV are based on the ability to work and be productive citizens. HIV is no longer the death sentence it was once perceived to be, and despite the horrific images of emaciated AIDS VICTIMS – our language needs to change! – being pushed in our faces as a deterrent (reminiscent of the 80s prevention strategies) in Sri Lanka, it is now a chronic manageable condition, just like diabetes is something you live with, albeit incurable.
But let’s not pretend that HIV and diabetes share similar reactions. S understands what stigma and discrimination means. He lives in Colombo at a safe house away from his family because of his fear of stigma and discrimination. Fear, that his family will be vilified by the local community. They still love him. They just cried when they heard, because they thought he was going to die too. No, HIV is not normalized in our country, but with young advocates like S who speaks about his status openly at workshops, there is hope. He does not bemoan his status, nor does he sit back and wait to be helped. He is now working for the National STD/AIDS Control Programme in Sri Lanka, and the people that listen to him speak include young people, our local police and prison administrations. He is emerging as one of the most positive advocates for HIV prevention, care and support, and ZERO discrimination in Sri Lanka.
But sadly, he is still alone. If the Stigma Index presentation we made in Korea gave the impression that the entire team was empowered during the process, then that was a convenient interpretation. Yes, the team learnt that they could conduct a study themselves and not always be the subjects of researchers. Yes, the team after living with HIV for years (for some as many as 17 years) learnt for the first time how HIV is really transmitted; beyond the dreaded (under the) blanket definition of SEX. But there it ended. No one wanted to demand accurate and comprehensive sex education for their peers. Instead of allowing for informed SAFE choices to be made, they preferred that people living with HIV remain under the perception that SEX will always infect another.
Who wants to tell people living with HIV that that the risk of transmission through vaginal sex is <1% and that with water-based lubricants and condoms, anal sex can be safe too? Who wants to talk about viral loads, which determine how infectious your body fluids are currently? We would prefer that people live in FEAR and stop having sex, for this is what people do when they are afraid, they stop having sex. No? It is as if somehow knowing you have HIV reaches in and wrenches out your libido, and that you become less human almost.
Those who want to have sex, will continue to have sex, just uninformed and more risky sex. Of course they will never admit to having sex because having sex when you’re living with HIV is BAD, not just naughty.
S doesn’t believe that. He believes that accurate and comprehensive information will help people living with HIV protect their sexual partners. He will continue to have safe sex, if he chooses to, knowing that he has taken every precaution to prevent HIV being transmitted to his partner.
There has been repeated discussion in the (HIV) industry about building the capacity of people living with HIV so that they can be more effective advocates for prevention, care and support and zero discrimination. Attempts even have been made. Largely all these attempts have failed. The community remains dependent on government, multilateral and NGO actors. Furthermore, due to the lack of capacity in HIV positive led organizations (there are currently three in Sri Lanka, two of which are offshoots of the first) none of them have secured any of the so called earmarked funding for HIV. They exist on sporadic donations, card making (a pittance), and the limited funding available from certain organisations that do ‘good’ in order to secure a pass into heaven. Not one of the HIV positive organisations is an independent entity, fighting for the rights of their community. As a result, people living with HIV continue to DIE in Sri Lanka of this chronic manageable condition.
In Busan the HIV positive community of Asia and the Pacific was out in force. No handout culture could have given rise to their voice. When the anti-FTA rally, which later resulted in the violence, began, I was proud to walk side by side with a community that understood what free trade agreements could do to their drugs and to their lives. When the violence erupted and the police started to arrest the Korean activists, it was the People living with HIV that were throwing themselves in the way of the police car to prevent the arrested Korean lawyer (also HIV+) from being driven away. My memory is strongest of Daisy, who repeatedly threw herself at the police screaming for the rights of her sister in the car, even admonishing them for their ignorance and threatening them in her broad Tamil accent (“You come to India, we’ll see then what happens”) when all else failed. Daisy refused to give up. This almost middle-aged activist had been through too much in India to allow for such an atrocity, and she was dragged away repeatedly in protest. There were others of course, all of them had fought hard at home for the rights they enjoyed, and while the physical pain would come later, what mattered was stopping the injustice of the moment. I was asked why we fought so hard, why we did what we did that day… I don’t think there is one answer, except to say that our journey with HIV, as someone living with the virus, or as someone affected by the virus, would not allow for us to stand back and take pictures. We had to help. We had to get involved.
Back in Sri Lanka, I ponder what the future is for the HIV positive community if they continue to be dependent on agencies other than themselves. Is it because the local communities have not struggled together that they lack a cohesive approach? Are the experiences of stigma and discrimination so varied that a common voice cannot be raised? Is the culture of dependency (government, Multilaterals, NGOs, mother Theresa types) so deeply rooted that the status quo is preferred?
Here’s an unpopular hypothesis. One no one really talks about. Whispers, yes, smiles even, snide remarks, but not really discussed. The stigma index showed that the respondents, drawn largely from the networks, were poor and uneducated. Life before HIV was limited. Why shouldn’t life after HIV still be limiting? If I have never known what rights are, why care now? If I have always benefited from those who are more educated and wealthier than me, why change that now? If I never understood the value of an education and skills (beyond candle making), why try to understand now? Living with HIV have given many an excuse to sit back and do what they always did; nothing productive.
Harsh? Yes, harsh. True? No, not always true, but true often enough that a radical shift is required if people living with HIV are to empower themselves, and live a healthy and productive life as equal citizens of Sri Lanka.
S, and another young positive man, P, are the future of this community in Sri Lanka. Their leadership has to be fostered so that we do not lose them as the advocates they can and will become. But we need to do more than just identify a couple of young leaders from the community. We need to ensure that a wider empowerment process or mechanism is considered for this forgotten people. Yes, they receive life saving treatment FREE. But is that enough? Are they really LIVING with HIV if life is limited to pill popping alone?
Those who have the means, continue to live anonymous and healthy lives with HIV. Perhaps then, these thoughts end with the simple equation of economics. Perhaps then, the fear of stigma is not the reason for preferred anonymity by the wealthier living with HIV. Perhaps then, we need to do nothing and let the status quo prevail.
A lesson from Busan and Daisy: Never give up.