Irene Homveld is interrupted when the station wagon she’s riding in bottoms out on the uneven road. The car slowly descends a steep hill that, here in Rwanda, is one of many. A moment passes and she resumes talking.
“They’ve seen a lot, they’ve heard a lot, they’ve been in a very stressful time,” she says, “and I’d like to see how they cope with it.”
Homveld is referring to the survivors of the 1994 genocide, a humanitarian crisis considered to be one of the 20th century’s worst. The 55-year-old Dutch speech therapist has been on a long vacation in Rwanda for the past two months and will return to life in Holland in a few days. Before she does, she wants to have one last memorable experience.
For roughly $35, Homveld is being driven to a community outside Kigali, Rwanda’s capital, to spend the day with a group of villagers who struggle with mental illness. The small, glossy flyer advertising these “culture tours” promises “a real taste of village life,” and recommends guests wear “comfortable clothes and strong shoes.”
Unbeknownst to her, Homveld is about to spend the day fighting stigma against mental illness.
The prevalence of certain mental health problems in Rwanda is far above the international average. Nearly one million people were killed during the genocide, and that devastation had a profound effect on psychological health. A 2009 nationwide study found that nearly 80 percent of the country’s adult population had been “exposed to traumatic events” as defined by DSM-IV, the standard for mental health diagnosis in the U.S.; it was also found that 28.5 percent of the same adult population suffered from PTSD. Rates of schizophrenia are also alarmingly high.
The country has made enormous economic and social progress over the past two decades, but mental health issues remain a severe and persistent problem. The health care system is working earnestly to administer services, but there are setbacks, not to mention limited resources. Stigma surrounding this issue makes matters worse. People with mental illnesses are often ostracized and discriminated against, and available treatments frequently go underutilized. Over the past 20 years, different organizations have emerged to address these problems, including NOUSPR (National Organization of Users and Survivors of Psychiatry in Rwanda), which is the NGO running Homveld’s culture tour. Since 2007, NOUSPR has employed a variety of strategies to combat stigma and provide therapy — some of which are more surprising than others.
It takes a village
Shemus, who is on the board of NOUSPR, tells her story through the translator. She lost her whole family during the genocide and was taken in by a woman who mistreated her. Drugs and alcohol made her problems worse, and one day she collapsed and fell into a coma. She was on medication for seven years. She learned about NOUSPR on the radio, joined the organization and has since stopped medication. Once a week she meets up with other members of Twizerane for group therapy and to make handcrafts.
The 1,200 members of NOUSPR are organized into 14 different groups spread across Rwanda. They meet regularly to share stories and offer support. They typically gather in public spaces or private homes, though some local leaders have recently allowed meetings at government offices. Most groups have an economic focus as well: One makes soap, another repairs sewing machines; members of Twizerane weave baskets and make necklaces from recycled materials.
NOUSPR advocates for people suffering from any mental health condition. Executive director Sam Badege says the organization is less focused on medical treatment than it is with the social integration and wellbeing of Rwandans with “psychosocial disabilities.” They use that term in lieu of “mental illness” to acknowledge that social circumstances often affect mental health.
“We say it is the environment that is disabling people,” says Badege. “You will meet people who are dressed in rags, who are eating in a dustbin, who are sleeping on verandas.” This isn’t “sickness,” he argues; instead, the mindset that turns human beings “into rubbish” is to blame.
In Rwanda, families and communities often ostracize people suffering from mental illness; they’re denied employment and excluded from social events. NOUSPR recently took in a young woman with autism who had been homeless for three months. For years, her family had abused her — physically and emotionally — until the stress became unbearable. NOUSPR found her, helped her clean up and with her consent, took her home. The family was skeptical about her return — they didn’t know if she’d stay, but NOUSPR convinced them to take her back in. When she saw her daughter looking so well, the young woman’s mother cried out of happiness.
After she returned home, one of NOUSPR’s “patient experts” began visiting each week. In front of her family, they taught the young woman basic life skills, such as how to bathe herself and change clothes. Many patient experts have faced similar maltreatment and isolation in their past. Fifty or so households have tried this method and Badege estimates two-thirds have “successfully taken the message.”
According to Dr. Yvonne Kayiteshonga, the head of the Mental Health Division of the Rwandan Biomedical Center, one big challenge the health care system faces is getting families to take their mentally ill relatives to clinics for treatment. Mental health issues, culturally speaking, carry “bad beliefs,” or superstition, Kayiteshonga says. Relatives might believe a family member with a mental health condition is being attacked by demons, or that their problems are caused by malevolent wishes from ancestors.
Another enormous challenge is Rwanda’s lack of mental health specialists. The country currently has just six psychiatrists, though that number will soon increase once the medical school finishes training their first class in the specialty. To compensate for the lack of psychiatrists, the Mental Health Division instructs approximately 60,000 community health workers in basic trauma treatment and psychiatric care. There are also several clinical psychologists on staff at the local teaching hospital. Still, Kayiteshonga says, “we are not where we wish we were. There is a ways to go.”
Back at the culture tour, Homveld accompanies her hosts to a small plot of land adjacent to Mutoni’s house. She harvests beans planted a few months ago by a group of visitors on an earlier tour. Once the beans are taken care of, Homveld and the group carry tall yellow jerry cans to a nearby spring and fill them with water. People from neighboring houses come to their windows and doorways to watch as they pass. Children join the group and eye Homveld curiously. Shemus stops to snap pictures with a digital camera. Then it’s back to Mutoni’s house to peel potatoes and cook the beans.
After lunch, Mutoni explains how Homveld is contributing to NOUSPR’s aims. Part of it is financial: Her $35 payment gives the organization and its groups a way to supplement their shoestring budgets. Eighty-three people — Rwandans and foreigners alike — have gone on 25 tours since NOUSPR started the program in June 2014. It’s brought in just under $1,900. Then Mutoni explains the special significance white visitors have in the village.
When her psychosocial disability set in, Mutoni spent two weeks in Ndera, the psychiatric hospital, and started taking medication. Once she was discharged, her family took her back in, but people in her neighborhood talked and gossiped. Even after she got off medication, got married, had children and moved into the house where she lives now, she faced constant humiliation. People would pass by her house and talk about the “mad woman” who lived there. However, that all changed when the abazungu, or people like Homveld, started showing up.
White people enjoy a privileged status in Rwanda, Sam Badege says, which the culture tours use strategically. When communities see groups of white people spending time with those they’ve cast aside, it causes them to rethink their attitude, Badege says.
Hildegarde Mukasakindi is the Mental Health Program Manager at Partners in Health in Rwanda. Lots of nonprofits are dedicated to fighting HIV, tuberculosis, and malaria, she says, but relative to demand, few are working on mental health issues. Partners in Health collaborates with Kayiteshonga and the Mental Health Division to train community health workers and make basic care more readily available across the country. Mukasakindi hadn’t heard of NOUSPR, but when she learns about the culture tours, she’s enthusiastic. “It’s good when we work together,” she says. “There is a good outcome when Rwandans and abazungu work closely.”
Other conversations with Rwandans working in the small field of mental health advocacy yield the same basic response: There seems to be a lot of support for NOUSPR and the culture tours.
On the car ride back to Kigali, with a new, Twizerane-made basket in hand, Homveld reflects on the day, which, on the whole, she enjoyed. She wasn’t totally comfortable, however, with being instrumentalized as a white foreigner. It felt “a little colonial” to her.
Currently, the culture tours only travel to locations close to Kigali. But the organization is growing fast and Badege thinks multi-day tours are in the future. He’s proud of the program: “The way we are seeing it,” he says, “it's a very, very amazing tool.”
For a variety of reasons — the success of the tours being one — Badege is hopeful about the future of mental health treatment and cultural acceptance in Rwanda. He believes that before long, the days of extreme isolation for people struggling with mental illness might come to an end.
NOUSPR’s programs aren’t standing in for mental health treatment. It’s a “soft approach,” Badege says of the organization’s methodology. But, he adds, “a very serious one.”