Welcoming Freedom and Happiness

KOMPAS/FAJAR RAMADHAN

Caregiver Yuliansyah Yanim (in yellow jacket) holds schizophrenia patient M. Abdul Fahri to calm him from an earlier rage on Wednesday (2/10/2019) at the Istana KSJ mental health center in Ciarnjur, West Java.

CIANJUR, KOMPAS — The government continues to ensure freedom from shackling for sufferers of schizophrenia and returning them safely to their families after completing treatment. However, they will need to continue taking their medications throughout their lives. This makes control by their respective families necessary, especially as community health centers (puskesmas) often run out of the antipsychotic medication.

Maryati, 23, was a victim of shackling. She had to lie down with her legs bent as there was not enough space in her shed in one corner of the kitchen of her older sister’s home in Pasir Haur hamlet, Sukaresmi village, Kadupandak, Cianjur, West Java. One piece of batik fabric covered her body and face.

Maryati has spent the last three years living in a cage measuring 1.5 meters by 1 m by 1.8 m. Despite her hands and feet remaining free, the small space was where she did everything, from eating and sleeping to even going to the toilet.

When the shackling liberation team comprising volunteers from the Istana KSJ mental health community and local government officials visited her on Thursday (3/10/2019), Maryati was mostly quiet. This was despite her being familiar with some of the visitors, as they had met her several times before. Even when they opened her cage’s lock and door, Maryati was quiet.

KOMPAS/FAJAR RAMADHAN

Siti Juansyah, 38, cries as she says her goodbyes to her younger sister Maryati (foreground), 22, who has schizophrenia, as the latter departs Thursday (3/10/2019) from their home in Sukasari village, Kadupandak district, Cianjur regency, West Java, for treatment and rehabilitation at the Istana KSJ mental health center.

She ignored them when they asked her to stand up. Eventually, Jajang Rahman from Istana KSJ went in and helped her up. Because of the doorway’s small size, Maryati was passed to her older brother Atep, 36, who was outside.

Maryati was then helped to sit down on the kitchen’s wooden floor. Her hair was disheveled. She covered her face and shouted “Lieur!” (dizzy) several times, most likely because she was confused by the sudden change of environment.

Maryati’s oldest sister Siti, 39, and Nuni Yunani, a social welfare officer of Kadupandak district, helped her put on clothes and a headscarf. Maryati asked several times where they were taking her. The others answered that she was going on a picnic in the city.

When she was asked to walk, her legs were wobbly as she had not used them for quite some time. Atep ended up carrying her outside the house.

When Maryati was at the ambulance that would take her to Istana KSJ in Cipanas, Siti could not help but cry. She wiped her eyes and caressed her sister’s head, telling her to be patient, pray a lot and beg for God’s forgiveness. “I had always wanted a little sister. When I got one, she was sick like this,” she said through tears.

Difficult choice

The decision to put Maryati in a cage was a difficult one for the family to make. They felt pity for her but they were afraid that she would endanger others or destroy things. Maryati often lashed out at her mother. The behavior was first seen when she was a teenager and it got worse after Maryati’s husband divorced her because of her illness.

Maryati remained ill. Going to a doctor was never a choice as it would have been too costly for the family.

“What should we do? We have no choice,” Atep said. In many communities, shackling is often seen as a show of love by family for schizophrenia sufferers, in order to prevent them from straying far from home, bothering and being bothered by others.

Maryati’s family had taken her to more than 10 traditional healers in and around Cianjur. Rice fields and gardens were sold to pay for her treatment. However, Maryati remained ill. Going to a doctor was never a choice as it would have been too costly for the family.

The family of schizophrenia sufferer Etin, 30, also lived their days in sorrow. Etin had spent almost half of her life shackled. On Wednesday (2/10/2019), after spending two months being treated at Istana KSJ, Etin was returned home.

When the car that brought her arrived in front of her family’s home in Cinangsi hamlet, Margasari village, Naringgul, Cianjur, her mother Erat, 50, greeted her happily. Erat caressed the forehead and cheeks of her oldest daughter. She walked Etin, who was walking with bent legs, inside the home.

Etin showed the same behavior as when Kompas met with her at Istana KSJ. She curled up against the wall, with her legs bent. She stared emptily with clasped hands.

Several hours before, when Kompas asked if she wanted to go home, she said “Hoyong” (I want to). She answered “Duka” (I don’t know) to other questions. She also said “Duka” when Naringgul puskesmas officers asked her how she was.

Treatment of schizophrenia sufferers is the responsibility of not only families and local communities but also the government.

When her mother asked her, Etin’s answers were more diverse. Etin was in a much better condition than when she was first released from her shackles, especially regarding her hygiene. “Currently, I feel much more than just happy,” Erat said.

Erat could not hold back her tears when she thought about Etin’s father, whose whereabouts are unknown after he refused to take care of Etin. Etin’s mother and younger sibling are the ones who take care of her. They also need to care for Etin’s ill grandfather.

Anggi Permana from the Naringgul puskesmas said that he hoped Etin’s family would start taking better care of her after she was returned home. They must ensure that Etin takes her medication, talk to her and never leave her alone. In parallel with efforts to improve her mental health, Etin must also do physical exercises.

After the Istana KSJ team returned Etin home, Etin’s family is now responsible for her treatment. This is a huge issue as treating a schizophrenia sufferer requires patience and consistency.

KOMPAS/FAJAR RAMADHAN

Members of the Istana KSJ mental health team examine the condition of Maryati, 22, who has schizophrenia, upon freeing her from her cage on Thursday (3/10/2019) in Sukasari village of Kadupandak district, Cianjur regency, West Java. Thousands of people with schizophrenia are shackled, confined and otherwise denied treatment in Indonesia due to social stigma that often stems from supernatural origins attributed the mental disease, as well as lack of awareness among both the public and healthcare personnel.

Huge challenge

This requires a strong will from the family of a schizophrenia sufferer. Apart from poor acceptance by communities, accessing the antipsychotic drugs in local puskesmas often requires extra effort. Puskesmas are often located far from households with schizophrenia sufferers and drugs are not always available. “In the past four months, we have had no antipsychotic drugs,” Kadupandak puskesmas nurse Ariswandi Sugianto said. This is despite the presence of 46 schizophrenia sufferers in the area.

Treatment of schizophrenia sufferers is the responsibility of not only families and local communities but also the government. Only through collective awareness can schizophrenia sufferers be healthy, productive and useful for themselves and their communities.