Sunday, February 15, 2015

The Tragedy of Bali’s Mentally Ill

photo: Nyoman was assaulted at the age of 16. Picture: Cameron Herweynen Source: News Corp Australia

IT’S a typical Bali setting. The TV burbles in the background. Sticks of incense smoulder in the morning sun and chatter fills the courtyard, competing with the incessant yapping of a caged dog as the family anticipates a Hindu cleansing ceremony.

Only the forlorn figure of Kadek, chained to his bed, his feet in stocks, in a room just metres from the courtyard hub, shatters the illusion. The 47-year-old’s sporadic guffaws punctuate the household’s routine. He sits facing a paneless window with a permanent view of half a tree and the dog.

His body is misshapen, gnome-like, and his skinny legs are bare, his only clothing a filthy, torn shirt. Empty banana leaves, which serve as a plate, lie on the bed beside a jar filled with coconut water. A bucket under the bed is his toilet and a crude hole has been cut in the ­bamboo bed, dispensing with the need to move him. His family has disposed of his ­faeces but the stench of caked filth and urine is overpowering.

Looking in, the viewer sees a grey, withered shadow of a man. His left eye is permanently closed and he has lost the ability to walk. Sometimes he makes eye contact; mostly he is lost in a desolate world. This morning, his 90-year-old mother has entered the fetid room, Kadek’s home for the past six years. Arm outstretched, he silently seeks a reassuring touch but she stays out of reach and ignores his entreaties. ­Standing, locked in his gaze, she is inscrutable. Is it shame, remorse, guilt, anger, or simply love for a long-lost son that she feels? In a split second, Kadek segues from hope to despair. He withdraws his arm as if stung. His face shuts down. His mother retires to her adjoining room. No words have passed between them.

Kadek has schizophrenia and a tendency to aggression. His cousin-in-law, Anggraeni, 28, says Kadek’s propensity to attack people and steal would be unmanageable were he free. She is one of 10 family members, including three children, Kadek’s brother and elderly mother, sharing the compound in south-east Bali’s Klungkung regency. “This is horrible and sad, the chains, but Kadek is with mental illness,” Anggraeni says, adding the stocks are backup security should he break the chains. “If he was free he would make ­trouble for the neighbours. Before [he was restrained] the family was scared of him. He was always disturbed. If people didn’t give him money or food he attacked them.”

Apart from a brief taste of freedom during a 2012 hospital stay for tuberculosis, Kadek has remained shackled. Does he complain of discomfort or pain? “He never says he is in pain,” Anggraeni replies. “Normally, people with ­mental illness have strong antibodies. He never has colds or flu. When mosquitoes bite, he doesn’t complain; when the weather is cold, he doesn’t ask for a blanket.” Neither does Kadek wish for freedom. “No,” he replies emphatically when I inquire. It’s one of the few words he utters. There is nothing to suggest any semblance of a life amid the deprivation. And Kadek’s case is not uncommon — about 60,000 Indonesians live like this.

The practice of restraining the mentally ill is called pasung. Even though it has been outlawed since 1977, it is widespread among poor ­Indonesian families who resort to iron shackles, wooden stocks, ropes, cages and locked rooms. The custom extends to many Asian and African countries but it has aroused little human rights concern and is neglected by researchers.

There has been some progress in Indonesia: since an anti-pasung program was launched in 2011, more than 5000 restrained people have been freed. The Health Ministry’s director of mental health, Eka Viora, says the rest should be released immediately. Viora is optimistic that a pasung-free program for 2015-19 will end shackling, although it’s unclear how violators would be penalised. There remain many obstacles to wiping out the practice, not least the severe shortage of mental health facilities. Mental health was allocated only about two per cent of the national budget last year, in a country where seven of the 34 provinces are without a dedicated hospital or programs and only 700 psychiatrists serve the sprawling archipelago of 240 million people. In Bali there is only one state psychiatric institution, the Bangli Mental Hospital. Last year, 45 previously shackled people were admitted there, on top of 32 in 2013, sparking hopes that more ­families are seeking help (although two-thirds were returning patients.)

“The government knows there are many more out there not being treated,” says psychiatrist and head of services at Bangli, Dewa Gede Basudewa. “There is a lot of stigma with pasung patients. Most are schizophrenic with hallucinations. Families isolate them because they are ashamed and embarrassed. The patients have many long-term problems. Some cannot walk or have atrophy. Some have been in chains for 20 years. They have infections, tuberculosis, malnutrition. We want to find pasung people, prevent them from being rechained and stop them being chained in the first place. Families know it’s not good to chain them but they do because they are very poor.”

Tenacious Balinese crusader and psychiatrist, Luh Ketut Suryani, is leading the push to eradicate the imprisonment of the mentally ill, working with her psychiatrist colleague (and son) ­Cokorada Bagus Jaya Lesmana. It is ­Suryani who takes me to meet her patients, including Kadek. The 70-year-old, silver-haired grandmother and former head of psychiatry at Bali’s Udayana University discovered the pasung ­phenomenon while researching a spike in ­suicides after the 2002 Bali bombings. She has treated about 1000 patients since 2009, 79 of them chained, but her energy is diminishing along with her caseloads. Among her 100 patients this year, 15 are shackled.

With thoughts of easing into retirement, she was coaxed back by Italian businessman and photographer Luciano Checco, who had come across horrifying images of victims of pasung and pledged his support. Last year, Checco largely sponsored Tears in Paradise: Photographing the Tyranny of Mental Illness in Bali, an exhibition collated by Suryani and Lesmana. Kadek and others in various states of pasung were depicted in 70 harrowing and confronting images by 13 Indonesian and international photographers. The exhibition travelled to Singapore and there are plans to take it to Jakarta and Jogyakarta.

Some of the victims photographed are now free, among the 31 per cent ­Suryani says recover with ongoing treatment. Others relapse, generally returning to restraints or confinement as many families resist interference. “They are ashamed of a mentally ill family member. They don’t say they have a mental illness, they say they are possessed,” says another Bali psychiatrist, Denny Thong.

Reasons for restraint are primarily financial; families in remote villages view it as the easy option if mentally ill relatives are aggressive and disturbing the peace. Most consult nearby traditional healers rather than pay for travel to free western facilities. There is also stigmatisation: villagers are deeply suspicious the mentally ill are conduits for evil spirits and bad karma. “The families generally believe mental illness is caused by curses, black magic or karma because nothing can be done to help,” says Lesmana. “Eighty per cent of families take their mentally ill relative to a balian or traditional healer in the beginning.”

Working on a shoestring budget, Suryani and Lesmana rely on donations and volunteers. When donations dry up, Suryani digs into her own pocket. She also has a private practice. Armed with anti-psychotic drugs, she makes monthly home visits to administer ­medication, tracking patients’ behavioural and physical changes. Most are well enough to be freed within several months and if families do not do so, she refuses further treatment.

About an hour’s drive northeast from Bali’s tourist epicentre, in Gianyar, Suryani and ­Lesmana assess a caged man following a report from a foreign NGO. Flanking a deserted house where Made, a 43-year-old man suffering schizophrenia, once lived with his wife and two sons is a custom-built cage, his home of two years.

It’s a grim start to the day in a scene as ­confronting as it is barbarous. Made hangs his head in humiliation, occasionally groaning like a wounded animal as he presses against padlocked iron bars. The room behind him is putrid, with no toilet facilities or running water. The smell of excrement is overbearing, exacerbated by the fact Made has a prolapsed rectum. His skin is ashen, his body emaciated.

In a 20-year history of mental illness, the ­former labourer spun out of control in 2004 when his wife married his father and they had a child together. “He ran amok with a knife,” says Suryani. “His family sent him to Bangli [mental hospital]. He wanted to kill the father and wife. The family and neighbours were scared of him.” Frequent stints at Bangli were unsuccessful and in 2012 the banjar (local council) built the caged room, locking him in.

Suddenly Made turns, strips and lies naked on a foul mattress on the dirt floor. His teenage sons, Made 15, and Wayan, 18, sit silently outside in utter despair amid mounds of rubbish. Both have been tormented and bullied over their father being “crazy”, resulting in the younger one leaving school and Wayan finding sporadic work as a driver. They are the only visitors, delivering water and meagre rations daily, paid for by Made’s mother.

Suryani furiously works the phones, appealing to a parliamentarian and hospital for Made’s immediate release and proffering her own money for it to happen. “Many people know about this but nobody wants to take action. Everyone worries he will be aggressive,” says Suryani, adding the banjar’s edict is not easily nullified.

Two ambulance men arrive, but the key to the padlock is missing. They hack at it with knives until it breaks. Dazed, Made stumbles out, so weak he needs help to the ambulance. At the hospital, doctors diagnose him with anaemia and say he needs an operation for rectal prolapse. He is shifted between various hospitals because no one wants a psychiatric patient and ends up back in the caged room. But with ongoing treatment he is venturing out more frequently when his sons visit. Plans are under way for his dilapidated house adjoining the caged room to be ­renovated by foreign-based NGO Soleman. One of Made’s sons will probably live with him.

Suryani takes me to see two women patients in Gianyar who she began treating last year. Wayan, 38, lies on her bed, agitated, while her mother strokes her arms, attempting to calm her. Wayan is catatonic and unable to walk after 20 years of being chained at her ankles in a locked room she shared with chickens. At 15 she developed severe psychosis with hallucinations and used to damage the family home. During her turmoil she frequently ran away — sometimes naked, screaming — disrupting the village. So her family locked her up. Suryani began treating her after Wayan’s father died last year. She was moved to an open room where her mother now sleeps alongside her.

“Her mother doesn’t understand how to handle her,” says Suryani. “The mothers love their children but they are hopeless and uneducated. And they fear their child’s anti-social behaviour will provoke vicious attacks from neighbours who might beat or kill them.” Wayan’s family has rejected further treatment or aid.

Suryani’s next patient, Nyoman, is twirling a flower in her hand. She is fixated as her mother keeps a watchful eye. By all accounts, the 43-year-old woman was a pretty and clever schoolgirl with numerous friends. But at 16 she was assaulted by a man and something snapped. She became painfully thin, suffered schizophrenia and violent mood disorders. “She ran amok, cut up her clothes and bedding and destroyed her room,” says Suryani, who first saw Nyoman in a room rank with excrement and urine. “She was harmful to herself, not others.” Confined to a room for more than 20 years, her mother has been her constant companion, even sleeping amid the putrid conditions. Since Suryani began treating her she is no longer confined and, though improved, is clearly traumatised. “She doesn’t know anything — we must try to make her brain active again,” Suryani says.

Despite Suryani’s best efforts, Kadek is still in stocks and chains. He was 26 when the ­hallucinations began. He had studied religion at high school, going on to teach it at elementary school. Proficient in English and possessing good social skills, his goal was to be a tour guide. The first episode of mental illness was the forerunner to numerous stays at Bangli. “Now,” says Suryani, “he is alone in the room every day. The family just visit to give food.”

Still, she cannot justify maintaining treatment when his family refuse to release him. When she met him in 2013, he had TB. He was shunted between the psychiatric and general hospitals. Suryani organised treatment from the local health clinic but on returning home Kadek was shackled again. When he improved with anti-psychotic medication, Suryani asked the family to free him. “I saw it was impossible for him to walk.” But the family still feared he would “run amok”, stealing, assaulting neighbours and destroying property, as he had before being tethered. “They disagreed, so I cannot keep treating him.”

As we start to leave, Kadek suddenly becomes animated, requesting sweets and cake, which we buy at the corner warung (shop). His cousin laughs, saying he has a sweet tooth. As he eats his mother reappears, plants herself in a chair and watches, sphinx-like, as her son receives the attention she cannot provide. A child of about 10 comes out to wave goodbye. Kadek, in his stocks and chains, smiles shyly. He thanks me for the food, in English.

The Australian Magazine by Deborah Cassrels, Journalist

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