teach about sleeping sickness and stars a giant fly : Goats and Soda : NPR
Don’t worry, this six-foot-tall tsetse fly didn’t bite anyone. He was part of a performance to teach Malawians about preventing sleeping sickness.
Hannah Bialic
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Hannah Bialic
Don’t worry, this six-foot-tall tsetse fly didn’t bite anyone. He was part of a performance to teach Malawians about preventing sleeping sickness.
Hannah Bialic
The first time Nicola Veitch went to a soccer game, she danced on the field in a white lab coat alongside a colleague inside a giant tsetse fly costume. Most of the fans applauded. Some were baffled.
Neither was auditioning to be the new team mascot.
Rather, Veitch, who’s a lecturer in parasitology at the University of Glasgow, put on this somewhat weird performance as a pilot for sleeping sickness street theater — using a theatrical event to teach people about a disease that affects about 1,000 people each year in Africa.
In Malawi’s two endemic districts where the disease is spread by local tsetse flies, the number of people falling ill from sleeping sickness has declined in recent years, but cases still persist. Last year, there were only 40 cases across the country. But Veitch points out the disease is “often unpredictable,” which means that the possibility of resurgence remains a persistent threat.
More than a year after that Scottish match, the group brought the theatrical event to soccer games in Malawi where people cheered while learning about how to protect themselves from this tiny killer. Veitch calls it an innovative intervention in remote, hard-to-reach communities with few smartphones.
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At the time of the performance, she says a clinical trial was underway for a new drug that “seems to be very promising in terms of treating sleeping sickness.” If successful, people with the disease could take the medicine at home instead of relying on the current method of treatment for late-stage sleeping sickness — the intravenous administration of a toxic drug that often leads to complications and is occasionally fatal itself. The new drug would represent “a massive change,” she says. But in the meantime, knowledge is one of the best ways to fight the disease, and the performance seemed to offer the spectators important information.
Sleeping sickness is found in communities in Malawi that border nature or game reserves. Those areas were where the performances were held. “So we are targeting the people that are really affected,” says Janelisa Musaya, a parasitologist involved in the project and the associate director of the Malawi Liverpool Wellcome Clinical Research Programme, instead of “just throwing the message all over the country.” In other words, she says, it’s a way of allocating resources wisely.
Targeting a ‘hypnotic’ parasite
Sleeping sickness, also called African trypanosomiasis, is caused by a parasite. “It almost looks like a worm,” says Veitch. But it’s not a worm. It’s a single-celled protozoan of the genus Trypanosoma.
The parasite relies on the tsetse fly to shuttle it around. When an infected fly bites someone, the parasite can slip into their bloodstream. It causes a little trouble there, says Musaya, “but when it crosses the blood-brain barrier and goes to the central nervous system, it can affect your sleeping cycle. That’s why it’s called the sleeping sickness.” (The disease is often confused with malaria since the symptoms of fever and lethargy are similar.)
When Veitch looks down the microscope at the parasite that causes sleeping sickness, she says, “it’s very hypnotic the way it moves and quite beautiful. I think that only a parasitologist can say that.”
That beauty was what got her thinking several years back about alternative ways to inform people about the disease — which many people in Malawi are still not aware of, Veitch says. She has a family member who works for SURGE, a Scottish art, theater and circus organization that runs an annual performance festival that brings cutting edge work to the streets and spaces of Glasgow. The sketches tend to be short, sharp, and interactive, she says.
One year, Veitch was drawn to an outside act that had repurposed an ambulance to teach people how to respond to someone having a cardiac arrest through engaging movement and comical water balloon antics. “And I thought to myself, we could be using street theater to engage people with parasitology,” she says. So she approached SURGE and said, “We could maybe work together on something to do with parasites. I think we could create something really cool.”
Veitch isn’t alone in her thinking. A few years back, the World Health Organization published a report on the role that the arts — including theater — can play in improving our physical, social, and psychological health and well-being, a particular concern in under-resourced countries.
Arts activities facilitate social interaction, says Nisha Sajnani, the co-director of the Jameel Arts and Health Lab at New York University, who wasn’t involved in the sleeping sickness project. She adds that performance is just the right platform and artform to “increase a sense of self-efficacy — a feeling of being able to do something about a problem.”
Veitch’s conversation with SURGE kickstarted a multiyear effort for her and her colleagues in Scotland and Malawi, including an arts and theater group called Voices Malawi that educates people about various illnesses, including COVID-19 and malaria and that uses street theater as a teaching mode.
First, the team had to dream up a way to depict sleeping sickness through street theater. Musaya was excited to get involved. After studying sleeping sickness for 15 years, there was still a missing link for her — “how do we educate the community not to get infected?” She hoped this theatrical foray might provide an answer.
Bwanalori Mwamlima, senior health promotion officer in the Rumphi district of Malawi, says that developing the performance was an act of co-creation among scientists, health workers, performing artists and individuals who’d survived the disease. He explains that the messages they wanted to communicate were, “How is it transmitted? What are the [symptoms]? How can it be prevented? And what are the current interventions?”
Tsetse fly theater has its Malawi premiere
When the show rolled out in Malawi in the fall of 2022, here’s what it looked like.
Communities were told that local football and netball teams would descend upon a particular field to play. Then, the day of the event, the performers (a team of nurses, clinicians, students and researchers) drove through town in a truck with music blaring. That got people to leave their homes and follow the truck to the edge of a soccer field. “We wanted to gather a crowd,” says Veitch.
Before the soccer game, they offered their theatrical vision of sleeping sickness — mainly visual with some narration. They gave red t-shirts to the audience and asked them to put them on to simulate the human bloodstream. The performers who were dressed as scientists in white lab coats waded into the crowd, each one carrying a giant net. “They were supposed to be scientists looking for infection,” says Veitch.
Once the crowd was sufficiently warmed up, the person dressed as the tsetse fly emerged. (The fly costume was made in Scotland by the costume designer regularly employed by SURGE. She’d made outfits for “all sorts of weird and wonderful performances,” says Veitch, but this was her first tsetse fly — which had massive wings and limited vision for the person inside the fly’s head, so you “need someone to be at your side when moving around.”)
The fly threw beach balls into the crowd, representing the infectious parasite, which audience members batted around.
The beach balls were different colors, a metaphor for the way in which the parasite changes its outer protein coat to evade the human immune system. “It’s very difficult to create a vaccine to something that undergoes this variation,” says Veitch.
The people dressed as scientists ran around to catch the balls of infection in their nets. And finally, they brought out a large net, enveloping the giant fly, escorting it offstage and bringing the performance to a close. In reality, this net is highly effective at attracting tsetse flies because of its blue color and the bottle of urine-smelling liquid placed beside it. “It’s just a simple bit of material that has insecticide” in it, Veitch says.
But sometimes people in nearby villages take down the nets stationed in game reserves because they don’t know what they are or why they’re there. Therefore, “one of the ideas behind the performance,” says Veitch, “was to get people to really consider they’re very effective at catching tsetse. And if you leave them up, it’s beneficial to everybody and that will prevent disease.” In addition, by showing researchers helping to capture the parasites, the performers hoped to demonstrate to the public that scientists and their work can be trusted.
Afterward, spectators received additional guidance during a question and answer session. They asked what differentiates a tsetse fly from a housefly (its size, color, and resting wing position), how long it takes for symptoms to appear (typically 2 to 4 weeks) and perhaps most important, how to prevent getting bitten in the first place (avoid nature reserves; don’t wear blue or black, which attracts the flies; wear long sleeves; apply insect repellent).
Musaya hopes the audiences walked away with an improved understanding of the disease and how they would contract it. “Many people who attended the performance said they didn’t know about the disease,” Veitch says. “They had heard of tsetse, but didn’t know of the disease it carried, and didn’t know of the symptoms to look out for.”
“There’s something about the dramatizing of the concept that increases the understanding,” she explains.
Mwamlima, who dressed up as the tsetse fly for one of the performances in Malawi, was surprised by the success of the theatrical approach, “considering that this is the first time to bring theater performances to teach science,” he says. “So I wasn’t sure whether it would work,” but he’s glad that it seemed to. Evaluations showed the audiences were engaged and felt confident asking questions. But long-term, Veitch says they’ll know if the performance was successful “if more tsetse nets are left in place and if more people come forward for diagnosis and treatment.”
In addition, the medical professionals and researchers, many of whom had never done anything like this before, found this to be a meaningful way to connect with communities. “It really improved people’s confidence in terms of thinking about public engagement,” Veitch says, “and they would do it again.”
“It’s a great example of how participatory theater offers a compelling, energizing, pleasurable way of bringing people together to clarify community concerns, feel empowered to make a difference, problem solve,” says NYU’s Sajnani.
“I think it’s a remarkable approach,” agrees Kartik Sharma, the founder of the organization Public Arts Health & Us, which translates health and environment research into film and art, including theater pieces. He wasn’t associated with the sleeping sickness project. Sharma argues that a performance “converts research into something which people can see and feel in a more personalized way.” The result, he says, is that “you can actually use it the next day in your life. So I think it’s a very powerful strategy.”
For those who missed the show, Veitch says that video recordings will be used as part of Malawi’s mobile cinema program, which ranges from big televisions on the back of land rovers to large screens set up next to marketplaces and other public gatherings. It’s a common way to publicize health messages in Malawi. The goal, says Veitch, is to “extend the legacy of what we’ve been doing.”
However, despite all the fanfare and promise of the program, Veitch, who says she wasn’t into soccer when this program began, admits that she’s still not a football fan.
