‘[Researchers] cannot deliver solutions to the problems of the oppressed but can assist people in the process of achieving the changes that they seek. Community partners and marginal communities are experts of their own lives and are most knowledgeable about the challenges they face and the aspects of their daily lives that need to change.’
In South Africa, where most sex workers are women, issues of sexual and reproductive justice are largely neglected. Because sex work is criminalized, the health system faces barriers to responding to the legitimate needs of sex workers. Women may avoid seeking care out of fear of recrimination from health workers who may stigmatize sex workers and use defamatory language in their interactions. Mothers for the Future is a collective that forms part of the Sex Work Education and Advocacy Taskforce (SWEAT), a non-governmental organization (NGO) based in South Africa. Mothers for the Future supports mothers who are sex workers by providing a safe place to organize, access support, build skills and share knowledge. Mothers for the Future (M4F) and activist-researchers collaborated on research to improve access to sexual reproductive health and rights (SRHR) and advocate for the decriminalization of sex work, to promote HS responsiveness to sex workers, and their children.
A key ingredient in the success of the research partnership is the harnessing of care and trust between M4F and the activist-researchers over time. Established since 2014, the partnership was built on the acknowledgement of the different structural positions held by the different partners and power as relational. As a team, our identities straddled differences and similarities in relation to race, gender, class, education, language and access to different networks, knowledge and experiences. These were explicitly recognized and consciously deployed throughout the research process. This created an openness to the recognition, distribution and shifting of power. Power was never situated in one place at one time and moved between the collaborators during an iterative and organic research process. Collaborators worked to check in with each other regarding what was taking place, what kind of hierarchies and vulnerabilities were operating, reinforcing care and trust. The team could not have done this work without the collaborators consciously exercising different privileges and access to power in different phases of the research.
Feminist theorist Audre Lorde coined the notion of ‘master’s tools’ to refer to strategies that function in society based on existing power structures and urged their dismantling. Researchers with their affiliations and resources from privileged institutions of higher education understood the power of evidence to influence policy makers for better health access for sex workers. The collaborators therefore intentionally chose to conduct research, not only to influence policy, but also a “tool” to advocate for change. Research was used as an entry point, but also in ways that challenged how research was conventionally done. Throughout the process the research as well as the role of the researchers were a political act, constantly reflecting on intersecting structural power and the implication for the relationships, processes, and outcomes of the research.
By recognizing NGOs and social movements as key parts of the health system, researchers sought to embed themselves with M4Fas a key health system actor with which to engage and co-produce knowledge that changes the health system to benefit sex workers. While a formal research process took place, the methodology employed purposely disrupted traditional power bases of researcher and subject This ensured a truly sex worker-led research process, enabling a great depth and texture to data collection and analysis. For example, the leader of M4F facilitated a body mapping exercise which enabled sex workers across three major cities to share their stories using their own voice in a diversity of languages in a safe space. Their stories were about their sense of SRHR through their bodies and their bodily experiences of accessing health care.
Grounded in the relationships with researchers, sex workers understood the research strategy as imperative for effective advocacy, policy influence and more importantly, how the research process validated their own experiences. This process centered sex workers as legitimate holders and producers of knowledge, who Kessi and Boonzaier affirm, are the “experts of their own lives and are most knowledgeable about the challenges they face”. As facilitators of social change, this process requires researchers to let go of power.
The most transformative contributions have been at academic conferences where the presentations have been co presented. Here the actual qualitative narratives have been presented by the leaders of M4F rather than by the researchers. This has been powerful in embedding activists/organic intellectuals in the theatre of power of the academy. In some instances, these presentations have been uncomfortable for decision makers, health workers and academics. Sex workers felt this discomfort when they were questioned about their legitimacy and the validity of their data. This discomfort was layered with undertones that sex workers should not be in places with traditional ‘authors’ of knowledge. The partnership was able to respond to such questions by presenting the research ethics approvals and through demonstrating rigour in the research process. M4F leaders themselves were able to confidently speak to the body of knowledge collected from the fieldwork. This demonstrates again how research is a political act, shifting how sex workers are seen in society. The highest standard of research, that being evidence informed and peer reviewed, is placed at the decision-making table by sex workers in partnership with the research team.
A key outcome of the research partnership is the ongoing engagement with decision makers including the Western Cape Provincial Minister of Health who listened to sex workers’ perspectives and acknowledged the health challenges faced by mothers who are sex workers. While covid-19 has put brakes on the next steps; this embedded research engagement has led to a wider circle and seats for a more diverse group of people at the table. As South Africa plans for National Health Insurance with an attempt to inform universal health coverage), co-produced research based on long standing relationships of trust and care, conscious of power dynamics, are critical to improve health outcomes and increase equitable access to care for those at the margins.
This article is part of a collection of articles on “Increasing the impact of health research through co-production of knowledge. Read the full collection online here.
Lance Louskieter, PhD Candidate, Health Systems and Policy Research Division, School of Public Health and Family Medicine, University of Cape Town, Queer Activist, Decolonial Scholar, Advocate for the decriminalization of sex work in South Africa. Senior Atlantic Fellow for Health Equity at Tekano. @lancelouskieter
Marion Stevens is the outgoing director of the Sexual and Reproductive Justice Coalition (SRJC). She is a researcher and policy analyst in sexual and reproductive justice. She is a PhD candidate SARChI Chair in Gender Politics, Department of Political Science, Stellenbosch University. @marionwish
Asha S. George is a Professor in the School of Public Health at Western Cape Town. She is a South African research chair in health systems, complexity, and social change @ashageorge72
Duduzile Dlamini is the director of Mothers for the Future (M4F) and a human rights defender and activist who participates in the fight for the decriminalization of sex work. She is on the management committee of the SRJC and the National Organizer/ Mobiliser for Sisonke – a union for Sex Workers in South Africa. mothersforthefuture.org
Shehnaz Munshi is a HPSR researcher, occupational therapist, Emerging Voice (2018) and Senior Atlantic Fellow for Health Equity at Tekano. Currently she is the Project Manager for the Sheiham Family/Wits program on social determinants of health and health equity, School of Public Health, University of the Witwatersrand. She serves on the steering committee of the People’s Health Movement. @shehnazmunshi
Competing interests: None declared.
Acknowledgements: We acknowledge the contribution of the Mothers for the Future leaders and the collective
Funding for this research project was received for the Sexual and Reproductive Justice Coalition from Amplify Change Grant: 64DM-X2CT-PM
Asha George is supported by the South African Research Chair’s Initiative of the Department of Science and Technology and National Research Foundation of South Africa (Grant No 82769) and the South African Medical Research Council. Any opinion, finding and conclusion or recommendation expressed in this material is that of the author and the NRF does not accept any liability in this regard.
This article is part of a series produced in conjunction with the WHO and the Alliance for Health Policy Systems and Research with funding from the Doris Duke Charitable Foundation. The BMJ peer reviewed, edited, and made the decision to publish.