This article is published in partnership with the International Women’s Health Coalition as part of a series of articles and opinion pieces on global AIDS and HIV in conjunction with the International AIDS Conference in Vienna, which ended this weekend. We welcome vigorous policy debates on these and other issues.
Watch Meena Seshu, co-founder of our Indian partner SANGRAM, deliver the Jonathan Mann Memorial Lecture at the International AIDS Conference (IAC) plenary yesterday in Vienna (her speech starts around the one hour mark in the taped webcast embedded above).
In her speech, Meena details SANGRAM’s path to success in working collaboratively with sex workers to claim their rights, including missteps based on good intentions. It’s interesting to hear these stories and see the way Meena’s thinking has evolved, and most importantly, how she has listened to the people she’s trying to help and let them take charge of their own projects, their health, and the destinies of their communities.
Here’s an excerpt from Meena’s follow-up post on the IAC website:
When I, an educated, upper-class woman began to spend time with sex workers as a population “vulnerable” to HIV, I found that they were treated almost as non-humans by society, and I could hardly fathom how they could live and work amidst so much social disdain and dismissiveness. I quickly realized that I knew nothing about them, their community, or their work. But, as I learned by letting them teach me, amongst themselves they were not disempowered. They managed their work, their clients, their families and the community that they made for themselves. AIDS was a terrible threat in their world, but they only needed the right tools, and they would manage AIDS too.
But instead of listening to them, the AIDS establishment – led by well-intentioned health service providers and educators – wanted to teach them “client negotiation skills” and turn them over to the same health services that had always treated them with hateful abuse. It was ridiculous that anyone should think they could teach sex workers anything about clients.
Meena, who came from an upper-class background and worked for years as a social worker, was admittedly new to working with sex workers. She describes going to a meeting of sex workers in which she handed them a plan for dealing with clients and convincing them to use condoms. The sex workers in the meeting listened patiently, but couldn’t stop laughing. They made her understand how “ridiculous” the plan was, while asking if she had any experience dealing with men. Then they told her, “you get us good quality condoms, we’ll do the rest!”
She also describes her role in a collaborative project with a local hospital in which ten doctors set up a clinic just outside the brothel area. Sex workers not only didn’t come to the clinic, but actually fled from their houses and the city to avoid getting treatment. This made the doctors furious, but taught Meena that you can’t tell people that they must get tested and treated, and that it must be a collaborative process based on free, informed consent: At-risk populations have a right to say both yes and no to medical treatments.
In her speech, Meena outlines SANGRAM’s Bill of Rights, a set of great guidelines for programming interventions around HIV and AIDS:
- People have a right to be approached with humility and respect.
- People have the right to say YES or NO to things that concern them.
- People have the right to reject harmful social norms.
- People have the right to stand up to and change the balance of power.
- People have the right not to be “rescued” by the outsiders who neither understand nor respect them.
- People have the right to exist how they want to exist.
Alex Garita, IWHC’s Program Officer for International Policy, had this to say about this Bill of Rights: “This fundamental set of human rights principles, if upheld throughout developing policies, programs, and budgets for HIV prevention and treatment, would change the course of the epidemic. I am convinced by the experiences of rural women; of HIV positive women; of transgender, male, and female sex workers; and gay rights activists, that only when communities and people are empowered to know and claim their rights, will there be a reversal in the spread of this disease. As one of the stories in this lecture illustrated, putting the power of prevention in women’s hands can achieve this. I hope the world is listening.”