How community-led research drives social change | Monica Malta

Summary

Podcast Summary: How Community-Led Research Drives Social Change | Monica Malta

Introduction

In the January 4, 2025 episode of TED Talks Daily, host Elise Hu presents a compelling narrative by Monica Malta, a distinguished mental health researcher and human rights advocate from Brazil. Monica’s talk delves into the transformative power of community-led research in addressing deep-seated social issues. This summary captures the essence of her discussion, highlighting critical insights, personal experiences, and the impactful outcomes of participatory research methodologies.

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Monica Malta’s Personal Journey and Motivation

Monica Malta begins her talk by sharing a poignant personal story that underscores her commitment to social change. She recounts the harrowing experience of December 1996 in Rio de Janeiro:

[02:32] Monica Malta: "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."

Monica describes her dire circumstances—uninsured, unemployed, living with her parents, and eight months pregnant. Her life took a dramatic turn when her doctor diagnosed her with AIDS, delivering the tragic news that she might not survive to raise her child. This encounter was not just a personal crisis but also a catalyst that propelled her into activism and research.

[04:10] Monica Malta: "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 Basin, 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’s needs, realities, priorities."

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Critique of Traditional Research Approaches

Monica criticizes the conventional top-down research methodologies that often exclude the very communities they aim to help. She points out that academic-led research frequently lacks meaningful input from marginalized groups, leading to solutions that may perpetuate biases and fail to address core issues.

[04:50] Monica Malta: "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 approach, according to Monica, not only diminishes the voices of those most affected but also risks missing the root causes of social and health challenges.

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Embracing Community Participatory Research

In response to the shortcomings of traditional research methods, Monica advocates for community participatory research (CPR). This approach emphasizes collaboration, ensuring that research is conducted with and for the community rather than on them. Monica highlights the benefits of CPR, including its ability to produce more comprehensive and impactful outcomes.

[05:30] Monica Malta: "Community participatory research is 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."

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Case Studies: Implementing Community Participatory Research

Monica shares specific examples of how CPR has been effectively applied in various communities, demonstrating its versatility and efficacy.

1. Research with Sex Workers in Brazil

Initially tasked with understanding condom usage among sex workers, Monica realized the research questions were misaligned with the community's immediate concerns.

[06:10] Monica Malta: "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 revelation led her to adopt CPR strategies, ensuring that the research addressed the actual dangers and needs of the sex workers. By collaborating closely with them, Monica was able to uncover and focus on issues that directly impacted their safety and well-being.

2. Supporting the Queer Community in Brazil

Monica's work with the queer community involved forming an advisory board that represented diverse regions and populations. This board collaborated in developing surveys and questionnaires that accurately reflected the community's experiences.

[07:00] Monica Malta: "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."

In response to these findings, Monica and her team partnered with local organizations to implement targeted strategies, such as:

• Prepara Neng: A free college preparation course and entrepreneurship training program aimed at breaking the cycle of social exclusion and poverty.

  [07:45] Monica Malta: "More than 80% of Prepara Neng 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 existing ones."

• Rise App: An application designed in close collaboration with the community to combat bullying and violence. Features include a panic button, safe route mapping, mental health screening, and 24/7 crisis support.

  [08:30] Monica Malta: "Help is just a push away. Thousands of users have shared with us how the app has literally saved their lives."

These initiatives exemplify how CPR fosters the development of solutions that are not only relevant but also sustainable, as they are co-created with the community members themselves.

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Impact and Long-Term Outcomes

Monica highlights the profound long-term impacts of community participatory research:

• Educational Advancement: Prepara Neng has significantly increased educational attainment among participants, providing them with opportunities for higher education and career advancement.

• Economic Empowerment: Entrepreneurship training has empowered individuals to start or enhance their businesses, contributing to economic growth and stability within the community.

• Safety and Mental Health: The Rise app has provided immediate safety solutions and mental health support, directly addressing the urgent needs of users and saving lives.

[08:15] Monica Malta: "Every single strategy we were able to bring to reality was developed, implemented, tested, revised in close collaboration with the community."

Through these examples, Monica demonstrates that CPR not only addresses immediate concerns but also fosters resilience and self-sufficiency within communities.

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Lessons Learned and Reflections

Monica reflects on the personal and professional growth she has experienced through her work:

[09:00] Monica Malta: "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 helped to change local and national legislations. But I was not their savior. They were their own heroes."

Her emphasis on humility and active listening underscores the essence of CPR—recognizing and valuing the inherent strengths and knowledge within communities.

Monica’s journey from a survivor of domestic violence and HIV to a renowned researcher and activist embodies the transformative potential of inclusive research practices. By prioritizing community voices, she has not only advanced scientific understanding but also fostered meaningful social change.

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Conclusion

Monica Malta's talk serves as a powerful testament to the efficacy of community-led research in driving social transformation. Her experiences highlight the critical importance of involving marginalized communities in the research process, ensuring that solutions are both relevant and impactful. By shifting from a top-down approach to one of genuine collaboration and participation, Monica exemplifies how science can be a force for real, lasting change.

For listeners seeking to understand the profound impact of community participatory research and its applications in various social contexts, Monica Malta’s insights offer invaluable guidance and inspiration.

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Notable Quotes

• Monica Malta [02:32]: "I wasn't even 30, but already a survivor of a 10-year marriage where violence was the daily norm."

• Monica Malta [04:50]: "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."

• Monica Malta [05:30]: "Community participatory research is a way to do science that really includes affected communities, working with and for them."

• Monica Malta [07:45]: "More than 80% of Prepara Neng students continue their education, receiving a college or university degree."

• Monica Malta [09:00]: "But I was not their savior. They were their own heroes."

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Further Resources

To explore more about the TED Fellows Program and access all TED Fellows films, visit fellows.ted.com.

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Production Credits

This episode of TED Talks Daily was produced and edited by Martha Estefanos, Oliver Friedman, Brian Greene, Autumn Thompson, and Alejandra Salazar. Mixed by Christopher Faizy Bogan, with additional support from Emma Topner and Daniela Ballarazo. Host Elise Hu invites listeners to tune in daily for fresh, thought-provoking ideas.

Transcript

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[Elise Hu]

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]

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.

[Elise Hu]

That was TED Fellow Monica Malta. To learn more about the TED Fellows Program and watch all of the TED Fellows film, go to fellows.ted.com and that's it for today. TED Talks Daily is part of the TED Audio Collective. This episode was produced and edited by our team, Martha Estefanos, Oliver Friedman, Brian Greene, Autumn Thompson and Alejandra Salazar. It was mixed by Christopher Faizy Bogan. Additional support from Emma Topner and Daniela Ballarazo. I'm Elise Hu. I'll be back tomorrow with a fresh idea for your feet. Thanks for listening.

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