Transcript
Bombas (0:00)
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Narrator (0:30)
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Sleep Number (1:00)
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Elise Hu (1:47)
You're listening to TED Talks Daily where we bring you new ideas to spark your curiosity every day. I'm your host, Elise Hu. Today's talk is a TED Fellows film adapted for podcasts just for our TED Talks Daily listeners. Ted's Fellowship supports a network of global innovators and we're so excited to share their work with you today. We'd like you to meet human rights champion Monica Malta. Monica is a mental health researcher working at the ground level in Brazil, advocating for people who are often most marginalized. She shares why it's so crucial for research in these communities to be participatory and how this work is helping address serious social challenges for those who need it Most.
Monica Malta (2:32)
It was December 1996 and close to 100 degrees Fahrenheit in Rio, Brazil. December is really hot in 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 5 year old daughter, feeling the kicks of my unborn child in my belly I was uninsured, unemployed, living with my parents and 8 months pregnant. I wasn't even 30, but already a survivor of a 10 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 parent and little daughter, eight months pregnant, definitely not thinking about a candlelight date. And then she said, the thing is, you have aids, and by reading your exams, I gotta 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 woman facing this terrible reality. With a traditional top down approach to research, academics with more power and resources swoop into safe 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, diminished. There is also a risk of not getting to the root of the problem. How can we fix community's challenges if they can 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 rights 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 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 he 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 and populations and work together to develop the questionnaire, conduct the surveys. What we found was that queer Brazilian 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 Prepara Neng, a free college preparation course and entrepreneurship training. This strategy is developed to break the cycle of social exclusion and poverty after seven years. Our own tracking shows that more than 80% of preparing a students continue their education receiving a college or university degree. The vast majority of those participating in entrepreneurship trainings either launched new businesses or improved existence 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 reality's 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 existing ones and even help to change local and national legislations. But I was not their savior. They were their own heroes.