It was December 1996 and close to 100 degrees Fahrenheit in Rio, Brazil. December is really hot there.
I was sitting in the waiting room and couldn't help but notice the loving couples holding hands discussing nursery plans, baby names. I sat in the chair alone with my five-year-old daughter, feeling the kicks of my unborn child in my belly. I was uninsured, unemployed, living with my parents, and eight months pregnant. I wasn't even 30, but already a survivor of a ten-year marriage where violence was the daily norm. After broken bones and broken dreams, it seemed my life couldn't get worse. Or so I thought.
When my doctor called me, I noticed her serious expression and felt a chill down my spine. And then she asked me, "Are you faithful?" I thought, wait, what? What the heck? And I just kept staring at her with a glazed look on my face unaware of what was going on. She insisted, "Are you faithful? Do you have relationships other than with your husband?" And then I told her once again that I had just divorced from my abuser, was living with my parents and little daughter, eight months pregnant, definitely not thinking about a candle-light date. And then she said, "The thing is, you have AIDS. And by reading your exams, I've got to tell you, you won't survive to raise this child."
Globally, one in three women face physical or sexual violence at some point in their lives, a number that has remained unchanged over the past decade. And just like me, women who experienced domestic violence are three times more likely to get HIV, usually from their abuser. But here's the thing, most of the research done to address this problem is led by academics with minimal input or participation from the women facing this terrible reality. With a traditional, top-down approach to research, academics with more power and resources, swoop in to “save” communities with strategies and questions that often end up perpetuating biases and stigma against the very people they want to assist. This leaves them feeling ashamed, confused and diminished. There is also a risk of not getting to the root of the problem. How can we "fix" communities' challenges if they can't provide any input? Aren't they the best experts of their own lives and experiences?
I came to understand this firsthand, both during my experience with my doctor on that day and through my own professional journey. First of all, my doctor was wrong. It is 2024 and I'm still here, 28 years later. I was sick for a long time, but eventually I got better and lived long enough to become a woman's right activist, a professor and a scientist. And in honor to the countless women who did not survive domestic violence and HIV AIDS, I wanted to use my science to make a difference in the lives of others like me. But that meant changing the way science was done in the first place.
Back in grad school, I got this very neat research project. I was going to help improve the lives and health of sex workers from Brazil, so I hit the streets to interview them. The main question I was supposed to ask: "How often do you have sex without a condom?" Pretty soon I realized I was way off base. The real worry was not condoms. The real fear was getting into a car with a client and not making it out alive. This eventually led me to adopt community participatory research strategies. That's a fancy name for a way to do science that really includes affected communities, working with and for them, from the planning stage to the implementation of strategies. Evaluations of community participatory research are ongoing, but some authors found it has a greater long-term impact compared to more traditional methods. This is probably due to this comprehensive data collection that really includes the unique perspectives of community members, allowing us to better understand complex social and health issues.
I saw this impact firsthand in my work with the queer community from Brazil. We formed an advisory board representing diverse regions and populations and worked together to develop the questionnaire, conduct the surveys. What we found was that queer Brazilians were facing high rates of bullying, violence, school dropout, poverty and mental health struggles. So we partnered with local organizations to implement strategies such as PreparaNem, a free college preparation course and entrepreneurship training. These strategies developed to break the cycle of social exclusion and poverty. After seven years, our own tracking shows that more than 80 percent of PreparaNem students continued their education, receiving a college or university degree. The vast majority of those participating in entrepreneurship trainings either launched new businesses or improved existing ones.
To address bullying and violence, we developed the Rise app, again in close collaboration with the community. The app has features like a panic button, safe route mapping, mental health screening, 24/7 crisis support. It has thousands of users, many of whom have shared with us how the app has literally saved their lives. Help is just a push away.
Every single strategy we were able to bring to reality was developed, implemented, tested, revised in close collaboration with the community. This is, in essence, what community participatory research is.
I know as a survivor myself that we want to be at the table. We want to co-create change in our own communities. But that's my own reality. And the singular experience of a domestic violence survivor from Rio is different from sex workers from Argentina, Indigenous women from the Amazon Bay, people living with HIV Aids, from Uganda, Mozambique, Kenya. To work with those communities, I also had to humble myself and listen, truly listen to each community needs, realities, priorities.
And I have learned so much. I've cried and laughed a lot. I have met amazing, resilient, powerful humans, and together we developed new services, improved the existing ones, and even helped to change local and national legislations. But I was not their savior. They were their own heroes.
