What do you do at VU Amsterdam?
"I am a medical and visual anthropologist and work as a lecturer in the Department of Organisational Sciences at the Faculty of Social Sciences and Humanities. In my research, I look at how people experience infectious diseases and how healthcare systems and organisations influence this. I have conducted research into tuberculosis and HIV, among other things, in various countries. In doing so, I also use images, film and art to visualise experiences that you don’t always capture in conversation. My current research focuses on HIV-related stigma in healthcare in Suriname."
Why are you researching HIV stigma in Suriname?
"The reason is worrying: in Suriname, the number of HIV infections is rising again, particularly among young people. This is striking, because HIV is now highly treatable. With just one pill a day, people can lead a healthy life and are no longer infectious.
"Yet there is still a major taboo surrounding HIV. This has consequences for how people deal with their diagnosis, whether they seek care and whether they continue to take their medication. In our research, we observed an interesting paradox. The healthcare system goes to great lengths to protect patients’ privacy. For instance, medical records sometimes do not explicitly mention HIV, healthcare providers use alternative terms, and they dispense medication in a less recognisable manner. In waiting rooms or during consultations, too, efforts are made to prevent a person’s HIV status from being recognised.
"This is done with the best of intentions, but it also has a downside. By concealing your HIV status, you inadvertently reinforce the idea that it is something to be ashamed of. This perpetuates the stigma. It can sometimes lead to ethical dilemmas and distressing situations. In intensive care, for example, doctors are sometimes forced to make difficult decisions about scarce beds. Some specialists view patients who do not take their HIV medication critically. Infectious disease specialists often counter that behind such a situation there is almost always a story of shame, fear, discrimination or difficult living conditions. Whereas someone with HIV, provided they are treated, can live a healthy life for decades to come. That is precisely why it is important to look beyond just the medical side of the story."
What made the international collaboration so valuable?
"We are working with the Paramaribo Academic Hospital, Amsterdam UMC, the Anton de Kom University of Suriname and the NGOs Double Positive and Women’s Rights Center. Double Positive supports people living with HIV, whilst Women’s Rights Center is committed to women’s rights, gender equality and sexuality.
"From the outset, we designed the research together. Not only with doctors and researchers, but also with people living with HIV themselves. This allowed us to link the medical and social aspects of the issue. That collaboration also built trust. Through Double Positive, we gained access to stories that would otherwise have been difficult to reach. It was precisely because different perspectives came together that a more complete picture of the impact of HIV stigma emerged."
How do art and film bring these stories to life?
"We are working on a documentary that brings together the stories of people living with HIV and healthcare workers. It’s challenging, because many participants wish to remain anonymous: they may appear on camera, but their voices must not be recognisable either. It shows just how deeply ingrained HIV stigma is and how cautious people have to be when sharing their stories."
"Alongside film, we deliberately use art to make visible experiences that are often difficult to put into words. One participant, for example, painted a large eye containing many different people. In the distance, a small figure floated alone. Through this image, she expressed how scrutinised and isolated she sometimes feels.
"During the art workshops, participants shared stories that would normally remain hidden. Many of them felt heard and recognised. The artworks were exhibited at the Diakonessenhuis Paramaribo, and, based on the stories that were collected, a vibrant mural was also created in the heart of the city. Together, the documentary and these artworks provide a starting point for conversations about HIV, stigma and care."
What makes you a free thinker?
“For me, free thinking means having the courage to move beyond traditional approaches to research. It is not about conducting research on people, but with them. I work alongside participants and create space for their stories. That is why I use creative methods such as art and film. These approaches often lead to unexpected insights. People do not just describe what they experience; they also show what those experiences mean to them. This combination of stories, emotions and images helps us gain a deeper understanding of complex issues such as HIV-related stigma. Ultimately, that is what I am looking for: new ways of truly seeing and hearing people.”
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