COLOMBO, SRI LANKA – “I hope that I can pin this butterfly on our president,” says K.S. Sumanawathi, looking at a bright pink, felt butterfly she holds in her hand.
Sumanawathi and other volunteers assemble the butterflies for a countrywide awareness and fundraising campaign in Sri Lanka for World Mental Health Day, which takes place next week on Oct. 10.
At first, Sumanawathi’s wish sounds unattainable. But having overcome acute schizophrenia through the help of a community-oriented mental health initiative, Sumanawathi says she can do anything if she sets her mind to it.
Sumanawathi lives in Tangalle, a town in the deep south of Sri Lanka. She says she was married to a fisherman who was often out of work and extremely abusive.
An energetic and enterprising woman, Sumanawathi held the family finances together by working tirelessly at any job that came her way. But with a young son and daughter to provide for, she says the financial burden and the constant physical abuse pushed her into depression.
Within a few months, her depression turned acute as she began to withdraw from her family, neighbors and friends. She stopped working and sat huddled in a corner of her house all day, not speaking a word or even looking at anyone. On other days, she wandered the streets and fields of her village in an agitated state.
As her husband’s physical assaults worsened, Sumanawathi says she eventually stopped responding. One day, believing that her son had died and everyone was hiding it from her, she tried to commit suicide by jumping into a well, but her neighbors rescued her.
Her family took her to traditional healers, thinking someone had bewitched her or an evil spirit had entered her. When this failed, they took her to the hospital. After several visits, the doctors diagnosed her with schizophrenia and prescribed her medication.
But she didn’t like the medicine’s taste, so she refused to take it. When her family forced her, she pretended to swallow the pills but later spat them out. As her symptoms worsened, her husband sent their children to live with relatives and often locked her out of their home.
Then the 2004 tsunami destroyed Sumanawathi’s home and belongings and killed her sister-in-law, whom she says had been her only friend and caretaker.
“My illness got worse,” she says. “I simply couldn’t cope. I couldn’t even go forward to get government aid because I was scared of people.”
She says the other villagers isolated her.
“No one in my village talked to me,” she says. “I was like a ghost in their midst. They didn’t acknowledge me, and if they did refer to me, they called me the ‘mad woman.’”
She lived like this for several years until two women stopped her during her wanderings through the village one day and started talking to her.
“They said they wanted to come to my house,” Sumanawathi says. “I didn’t have a grain of rice to give them, but I quickly borrowed some food and cooked for them. I was touched by their kindness. It was the first time someone had spoken to me kindly after many years.”
The two women were helping to introduce a community mental health project in Sumanawathi’s village to help people cope with the traumatic impacts of the tsunami and also to identify and assist those living with mental illness. Sri Lanka’s Ministry of Health launched the Community Mental Health Programme in 2002 in partnership with BasicNeeds, an international charity that aims to end suffering from mental illness.
“They also took me to the doctors in the hospital clinic,” Sumanawathi says. “They spoke to the staff on my behalf, and the doctor was also very kind. They checked with me all the time if I was taking my medicines, they visited me regularly, and they explained why I needed to take the medicines. So I began to take my pills.”
The initiative added an equally important element to her medical treatment: a support group. The group comprised half a dozen people from the village with mental illnesses, members of their families and village volunteers.
“We discussed our problems, the difficulties we faced, and we also discussed small projects like setting up home gardens,” she says. “I also joined monthly meetings where they had special programs.”
She says her role in the group increased, as did her faith in her self-competence.
“After a few months, I was asked to make presentations on behalf of my group,” she says. “I also began to keep the written records. I didn’t feel scared to do this because I felt very loved by the group.”
Sumanawathi says the symptoms of her illness – acute depression, withdrawal, inability to care for herself or carry out routine tasks, and an urge to keep walking or moving – began to lessen and gradually disappeared.
The government along with local and international partners have launched a community mental health project in which people with mental illnesses actively drive their own and others’ rehabilitation. The members’ latest project is the Butterfly Campaign to raise awareness and raise funds around next week’s World Mental Health Day.
While the government estimates that only 2 percent of Sri Lankans suffer from some form of mental illness, Sahanaya, a local nonprofit organization working to develop mental health care, estimates that about 25 percent of citizens are diagnosed with one or more mental illnesses.
Sri Lanka also has one of the world’s highest suicide rates – 21 suicides per 100,000 people as of 2007 – according to Sahanaya, which attributes 90 percent of the suicides in the country to mental illness.
Yet the country has only 50 psychiatrists for a population of about 21 million, according to Dr. Neil Fernando, the consultant psychiatrist at the National Institute of Mental Health.
The Community Mental Health Programme aimed to combat this high incidence of suicides from mental illness in the country. The government and BasicNeeds selected Sumanawanthi’s district of Hambantota for the pilot project, as it had the highest suicide rate in the country at the time.
Fernando was instrumental in developing the project in his former post as acting director of the Mental Health Directorate, the Ministry of Health’s body that oversees mental illness.
“The project used a novel approach where they consulted people, and they developed the village mental health plan, with people also volunteering to implement the plan,” he says. “About 35 percent of the teams at village level are those living with mental illness or from families who have a mentally ill person.”
He says this overcame the problem of access to treatment.
“One problem with mental illness is that you can have great hospital facilities, but yet people will not come,” Fernando says. “This is called the treatment gap. You need to reach the patient rather than wait for the patient to come to you.”
He says the project strives to close this gap.
“This is where the community groups come in,” he says. “They live in the village, they know where the need is, and they are able to bridge the gap. There is a multidisciplinary team that visits the patient – a medical doctor, a community psychiatric nurse, a social worker and the volunteers from the village. We have detected many new patients in this way.”
The pilot’s success led to the expansion of the project.
“Although we began in one district, it soon spread to other districts,” he says. “After the tsunami, we were able to mobilize these teams to identify and care for mentally ill patients in the immediate aftermath, as well as follow-up visits and help with counseling of traumatized people.”
Soon, there were community health teams in almost every village within the Southern province. The health teams also function as support groups.
Rohan Samarajeewa, from the same district as Sumanawathi, is the manager of the Community Action Forum, which was the first action group established in this initiative.
“At the start, it was very hard to get people to talk about mental illness, even to acknowledge it,” he says. “At the time, all services were hospital-based. For some, it takes one day just to travel to the main provincial hospital, another day to return. It costs time and money, so they don’t go.”
The group aimed to change that.
“So, we brought the doctors to the village,” he says. “They started treating people, and the patients started improving. As people started getting better, the attitudes started to change.”
Before, attitudes used to isolate people with mental illnesses.
“We had some patients in our village who never came out of the house,” he says. “People didn’t even want to go close to their house, thinking the mental illness was contagious.”
Treatment encouraged the patients to reconnect with their communities.
“When they started to get better, they started coming out of their homes,” he says. “They joined our programs, they went to the shops, they talked to people.”
In turn, the communities began to understand and to accept them.
“Then, people began to understand that mental illness can be cured or helped to get better,” he says. “The recovered people were doing good work. They were working in the temples, planting home gardens, helping in village activities. They were contributing to our village.”
The small groups became more than support groups. They started to plan fun activities and community projects like planting home gardens.
They also began to develop income-generation initiatives. Living in a village with a thriving coir industry, Sumanawathi and her group decided to make rope from coir, a fiber extracted from the outer husk of the coconut.
“We made the rope, and I took it to market and sold it and brought back other items that I could sell in the village,” she says. “I slowly began to improve my income.”
In 2011, Voluntary Services Overseas, an international development charity based in the United Kingdom that is working with mental health in Sri Lanka, identified more than 30 of these community groups nationwide and brought them together for a series of national workshops. They identified urgent needs: registering with local government agencies as organizations, finding stable livelihood options, and addressing stigma and discrimination.
The Community Action Forum led the way by registering as a social service organization. The group members encourage one another to develop small enterprises, with some becoming thriving businesses that employ or train others outside the group. They also combat stigma by speaking about their illnesses and recoveries.
The workshops also led to the Butterfly Campaign to raise both awareness about mental health issues and funds for the operation of the community groups and organization of further national meetings.
“Through the campaign, the groups want people to talk about mental health more, to think about it more and not to ignore it,” says Shaun Humphries, a volunteer for Voluntary Services Overseas who works in the media unit at National Institute of Mental Health as part of a European Union-funded mental health project.
The groups are selling the colorful pink and purple butterflies throughout the island during October.
“The butterfly is a positive image of mental health,” Humphries says. “The concept was that no two butterflies are the same, just like the idea of the mind. Everyone is different but equally beautiful. And the groups decided on the slogan too: ‘Loving hearts can change minds.’”
The groups are also handing out a booklet with information on mental wellness.
“The messages are presented in a way that is welcoming and not frightening,” Humphries says. “The booklet is key to this campaign. It encourages people to just talk about what they are feeling, whatever they are feeling, and not to ignore it.”
Samarajeewa says that currently, these feelings rob people of their humanity.
“When people get mental illness, they lose their human rights,” he says. “They lose opportunities for education, to get married, to raise a family, to do a job.
He says these firsthand experiences position the groups to lead the Butterfly Campaign.
“It is the people who are mentally ill or who have recovered from it who can speak for their rights,” he says. “If someone else speaks for them, that does not acknowledge what they can do. They need to be made strong to stand up for themselves and then to help others to stand up also.”
“I suffered – I know what suffering from mental illness is,” Sumanawathi says. “I don’t want to see anyone else suffering alone like that. It is possible to get help, to get better, even to get completely cured. So, I work tirelessly to tell people that. Having mental illness doesn’t mean you have to live a miserable life.”