TED: The speaker shares her journey from surviving domestic violence and HIV to becoming an activist and scientist, emphasizing the importance of community participatory research.
TED - How Community-Led Research Drives Social Change | Monica Malta | TED
The speaker recounts her personal experience of surviving domestic violence and being diagnosed with HIV, which she was told would prevent her from raising her unborn child. Contrary to her doctor's prognosis, she survived and became an activist and scientist. She highlights the prevalence of violence against women and the increased risk of HIV among those who experience domestic violence. The speaker criticizes traditional research methods that exclude the input of affected communities, advocating instead for community participatory research. This approach involves communities in every stage of research, leading to more effective and relevant solutions. She shares examples of successful initiatives, such as PreparaNem, a program that helps queer Brazilians access education and entrepreneurship opportunities, and the Rise app, which provides safety and mental health resources. These initiatives have significantly improved the lives of participants, demonstrating the effectiveness of community-driven research and solutions.
Key Points:
- Community participatory research involves affected communities in all research stages, leading to more relevant solutions.
- Traditional research often excludes community input, perpetuating biases and stigma.
- Programs like PreparaNem and the Rise app have successfully addressed social exclusion and safety issues.
- The speaker's survival and activism highlight the resilience and potential of those affected by domestic violence and HIV.
- Community-driven initiatives can lead to significant improvements in education, entrepreneurship, and safety.
Details:
1. 🌞 A Challenging Start in Rio
- In December 1996, the speaker faced extremely challenging conditions in Rio, Brazil, with temperatures soaring near 100 degrees Fahrenheit, while being eight months pregnant and uninsured, highlighting severe financial instability.
- The speaker was living with their parents, unemployed, and heavily reliant on family support, further emphasizing the precariousness of their situation.
- Having survived a ten-year marriage with daily violence, including broken bones, the speaker's narrative underscores resilience amidst cumulative adversities.
- The responsibility to care for a five-year-old daughter while preparing for the birth of another child adds to the complexity of the speaker's challenges, illustrating a narrative of survival and fortitude.
2. 🩺 A Life-Altering Diagnosis
- The subject received an unexpected and shocking diagnosis of AIDS from her doctor, indicating a severe impact on her life expectancy.
- The doctor communicated that due to her condition, she may not survive to raise her unborn child, which adds a layer of emotional complexity to the diagnosis.
- The diagnosis brought an overwhelming emotional response, filled with fear and uncertainty about the future.
- Prior to the diagnosis, the subject had been experiencing health issues that went unexplained, now attributed to AIDS, offering a retrospective understanding of her symptoms.
- Faced with this life-altering news, the subject began contemplating immediate steps, including seeking second opinions and exploring treatment options to extend her life and improve her quality of life.
3. 📊 The Overlooked Voices in Research
- Globally, one in three women face physical or sexual violence at some point in their lives, a statistic that has remained unchanged over the past decade.
- Women who experienced domestic violence are three times more likely to contract HIV, typically from the perpetrator.
- The majority of research on this subject is conducted by academics with little to no direct involvement or input from the women who are affected by these issues.
- An example is a study in Sub-Saharan Africa that showed a lack of direct participation from local women in research design, despite the region's high prevalence of domestic violence.
- Only 10% of studies in the last decade involved direct interviews or focus groups with women who are survivors of violence.
- Including the voices of these women in research can lead to more effective solutions and policies tailored to their specific needs.
4. 🔄 Redefining Research Methodologies
- Traditional top-down research approaches often perpetuate biases and stigma against communities they aim to assist, leaving individuals feeling ashamed and diminished.
- Without community input, research may fail to address the root of the problems, as communities are often the best experts on their own lives and experiences.
- The speaker illustrates the importance of community input with personal experiences, emphasizing the need for a more inclusive and participatory research methodology.
5. 🌟 Personal Recovery and Professional Motivation
- Surviving illness led to a career in activism, academia, and science.
- Motivated by honoring women who didn't survive domestic violence and HIV/AIDS.
- Desire to use scientific knowledge to positively impact others facing similar challenges.
6. 🔍 Embracing Community Participatory Research
- Community participatory research involves integrating affected communities into every stage of research, requiring adjustments to traditional scientific methods.
- An example from Brazil highlighted that sex workers prioritized safety over health practices, which resulted in a shift in research focus to better address their actual concerns.
- This approach potentially offers a greater long-term impact than traditional methods by collecting comprehensive data and incorporating community perspectives, leading to more relevant solutions.
- Through community involvement, researchers can gain a deeper understanding of complex social and health issues by considering the lived experiences and insights of community members.
7. 📈 Success through Community Initiatives
- A diverse advisory board was formed to develop and conduct surveys within the queer community in Brazil, revealing high rates of bullying, violence, school dropout, poverty, and mental health struggles.
- Partnerships with local organizations led to the implementation of strategies like PreparaNem, a free college preparation course, and entrepreneurship training to combat social exclusion and poverty.
- After seven years, over 80% of PreparaNem students continued their education, obtaining college or university degrees.
- Entrepreneurship training participants largely launched new businesses or improved existing ones.
- The Rise app was developed to address bullying and violence, featuring a panic button, safe route mapping, mental health screening, and 24/7 crisis support, with thousands of users and testimonials of life-saving impact.
8. 🤝 Collaborative Change and Resilience
- Community participatory research emphasized, with strategies developed and tested collaboratively with communities.
- Diverse experiences highlighted, such as those of domestic violence survivors in Rio and sex workers in Argentina, showing the importance of understanding varied community needs.
- Effective collaboration led to the development of new services, improvement of existing ones, and even changes in local and national legislation.
- Emphasis on listening to community needs and realities, demonstrating humility and the power of collective action.
- Recognition that communities are their own heroes, not relying on external saviors.
