Many years ago, as a little girl, Heni Dwi Windarwati was out walking with her parents when a stranger approached them on the street.
“He walked towards me, seemingly out of the blue, and kissed me on my forehead. I remembered not feeling scared because my parents did not react strongly to it,” she remembers. Instead of being angry, her parents raised their hands gently and smiled to the man. Then they explained to her that the man had a severe mental health condition and did not mean any harm. “Very early in life, I learned compassion towards vulnerable people, and this would shape my passion for years to come.”
A shocking experience
Years later, this interest in mental health inspired her to get a doctorate in psychiatric nursing. Dr. Heni went on to become a lecturer at Brawijaya University in East Java. “My main role is to teach and do research, and they are both very important, but something inside me kept saying that I needed to be doing more. And then I discovered pasung.”
Pasung is the practice of shackling and confining people with mental health conditions at home because of the misconception that they are physically aggressive or dangerous. Some people believe it is because they are possessed by demons. They are forced by their families and society to stay in isolated rooms, bound with chains and wooden beams, all day long and all year round. They eat, drink, urinate and defecate in place. It is still a common practice in Indonesia.
“In one of my earlier encounters with people in pasung, the person was chained to a tree outside his home, while the family allowed their cow to live inside the house. I realized that society has given up on these people, and it is my role to help them to regain their rights,” says Dr. Heni. There are at least 12,000 people in pasung in East Java, she estimates, and, in collaboration with 38 district health offices in the province, she has identified 4,000 of them. Most of them have schizophrenia.
“I then decided,” she says, “that releasing people from pasung is my calling.”
Knocking on doors
Her calling having been decided, Dr. Heni established a team of her colleagues and students to help release people with mental health conditions from pasung. The local government formally recognized the team, so they could collaborate with community leaders, the police, and others.
“The first step of the work is to identify these patients, because families often hide them from social life. This means walking around in the communities to try to get information on the patients and knocking on doors. We work around the clock, but I am very grateful that my nearly women-only team is very devoted to this cause.”
Many people in pasung are there for years, even decades. Dr. Heni met one person who had been shackled for 43 years, the longest period of confinement she has yet encountered. She started to wonder about the life of her patients after pasung. “It will not be possible for these patients to be part of society without any further support, especially when they still face stigma everywhere.”
To provide ongoing support for patients, in 2016 Dr. Heni launched an annual three-day mental health camp. There, patients who have been released from pasung, their families and healthcare workers come together for mutual support, learning and play. “The camp has boosted the confidence of former patients,” she says, “and has shown family and healthcare workers that the patients can participate in social life like everyone else.”
Listening with an open heart
Dr. Heni thinks that pasung would not exist in the first place if mental health services were available and accessible, and if communities were well-informed about mental health. She works continuously towards this goal, including by advocating for the government to bring mental health services closer to the community.
“My main strategy is to listen to the family with an open heart,” says Dr. Heni. “I learned that most families did not want to shackle their family members. However, the pressure from the community and lack of mental health services left them with no options.”
Dr. Heni and her team also ensured the family that once released from pasung, her team will support the family in taking care of the patient, teaching them about hygiene and integrating them back to the community.
“I certainly think that my leadership approach is shaped by me being a woman,” she says. “Being collaborative and compassionate comes naturally to me, but without this approach, it would not have been possible to release 600 people from pasung.”
Even though pasung is now illegal, Dr. Heni thinks that the solution to this crisis goes beyond policing. “It is not only about enforcing the law,” she says, “but about understanding the family’s concerns and fears, and convincing them that the patient could have a meaningful life.”
Women in charge
“We need to be preparing schools in supporting the mental health conditions of our children, before it is too late,” she says.
If she were in charge of mental health care in the country, Dr. Heni would focus on education and prevention. “I would push for more women in leadership positions in health, as I believe their leadership will be based on assertiveness, hard work and kindness. People would be able to talk about mental health problems as any other health problems — no stigma, no discrimination, only empathy and compassion.”
As a university lecturer, she promotes this approach with her students. “Nearly 90% of my students are women. Imagine a world where they all become leaders, and lead with the brain and the heart. It would be a kinder, more humane and fairer world,” she says. “Pasung would just be unthinkable.”
UN agencies support the mental health work of government and partners in Indonesia. Dr. Heni and WHO Indonesia have collaborated on various mental health projects, including guidance on releasing people from pasung and building a support system for the whole family. Also in Indonesia, UNICEF and UNFPA work on mental health with adolescents after disasters and new mothers, respectively.
Story by Sukma Dwi Andrina, WHO Indonesia. Editorial support by Paul VanDeCarr, Development Coordination Office. To learn more, visit Indonesia.UN.org. To learn more about the results of our work in this area and beyond, please visit the UNSDG Chair Report on DCO.