City of hope — turning Bali’s ‘disgrace’ into pride
Nyoman’s decade-long struggle with schizophrenia almost cost him his family, but Rumah Berdaya helped him reclaim his life.
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Nyoman Sudiasa only realised he had been living with schizophrenia in 2014. Before then, the 46-year-old had struggled with the disorder for over 10 years. His wife had to cope with his mood swings and inability to keep a job. She almost left him because of the strain, but stayed on for her children.
Their fortunes changed when they met Dr I Gusti Rai Wiguna, who diagnosed Nyoman. Meeting patients like Nyoman encouraged Dr Rai to start Rumah Berdaya in 2015, providing people living with schizophrenia a community that enables them to gather and express themselves. They can also learn a new trade with the help of volunteers.
“Schizophrenia is not crazy”, 45-year-old I Nyoman Sudiasa proudly declares.
Powerful words from someone who, up till four years ago, didn’t realise that he had been living with the disorder for over a decade. Sitting under the Bali sun, he recalls how his symptoms surfaced at age 27.
“I felt something strange in me. I began to get nervous, feel anxious and suspicious of others, including my wife. I felt that everyone around me was always watching me and I felt so depressed.”
His wife, Ni Putu Sri Ayu Astuti, became distressed as she struggled with his mood swings, mistrust, and inability to hold down a job. The emotional and financial strain almost caused her to leave him but she persevered for the sake of the children, and because her family convinced her to stay.
Despite numerous visits to the hospital, Nyoman and his wife were left baffled as to what was causing the changes in his behaviour and his ability to think and reason.
It was only when he met psychiatrist Dr I Gusti Rai Wiguna, that he finally found an answer to the mystery causing him and his family so much anguish — schizophrenia, an extreme mental health condition that affects an estimated 21 million people worldwide.
A meeting that changed lives
Encounters with individuals like Nyoman made Dr Rai realise that more is needed to support people living with mental health conditions, a highly marginalised community. He was especially moved to help when he discovered that one of his neighbours had locked their children in their rooms.
“There were two of them - one with schizophrenia and the other child had severe mental retardation. Both were confined in their rooms and I saw that as my calling.”
The lack of understanding about mental health issues, compounded with cultural beliefs and customs, has led to what is locally known as “pasung” or shackling.
Many individuals with mental disorders have been found in appalling conditions while being chained up in rooms, and they often lose the ability to walk because their muscles atrophy. A Human Rights Watch article reported that such cases dropped from 18,800 to 12,800 between 2016 and 2018, due mostly to concerted efforts by the Indonesian government and outreach groups. But more needs to be done.
With the help of artist-activist Budi A K Kabul, Dr Rai started Rumah Berdaya in 2015, a community where people with schizophrenia could gather, learn to express themselves, and be taught a new trade with the help of volunteers.
Its 76 members learn crafts skills like painting, incense-making, silk-screen printing, coconut oil production, and baking, which helps them generate an income for themselves. Many of them rely on costly medication to treat their symptoms, so the added income helps ease some financial stress on their families.
Having started some of these programmes, Budi sees the more long-term benefits, beyond the financial support.
“There is a very positive impact when our members’ products are sold. It raises their confidence levels. That’s because they feel their work is appreciated by the public despite the fact that schizophrenia has a stigma in society,” he says.
It takes a village
An equally important part of Rumah Berdaya’s mission is to foster better interaction between its members, their families and the public. This is particularly crucial when it comes to understanding the complexities of shackling.
Dr Rai, who has dealt with shackled patients, cautions against solely blaming the family, “I know that the family is also a victim. If they had a choice, they would not shackle a family member”. Often times, the family locks them up to protect them from harming themselves or getting lost. Despite the government banning the practice in 1977, the issue still hasn’t been eradicated, putting some 14 million people who suffer from mental disorders at risk.
Hope is in the air, however, as Dr Rai and Budi continue their outreach efforts to “bridge the gap between family, the individual and what society can do to help”. They continue to engage with government officials, hospitals and health care workers to further discuss how best to care for people with schizophrenia.
Nyoman, with the encouragement of Rumah Berdaya and his family, has started giving talks to local community groups. He is also one of four members to have been hired by the Denpasar City Social Service. As the coordinator of Rumah Berdaya, Nyoman believes his new employment “acknowledges that we can integrate with society in a more natural way.”
As loved ones, members and volunteers dance in unison to a popular folk tune, it’s easy to imagine a safer, kinder community if everyone heeds the advice of Nyoman’s wife, Sri Ayu, “to be patient, fully supportive and loving”. “That kind of family support is very important for the healing process,” she adds.