According to 45-year-old I Nyoman Sudiasa, “schizophrenia is not crazy.” Strong remarks from a person who has been living with the condition for more than ten years but was unaware of it until four years ago. Seated in the Bali sun, he remembers how, at the age of 27, his symptoms began.
“I sensed an odd feeling within me. I became tense, fearful, and distrustful of everyone, including my spouse. I was so depressed because I thought that everyone was staring at me all the time.
His mood swings, mistrust, and failure to maintain a job caused his wife, Ni Putu Sri Ayu Astuti, to become distressed. She was on the verge of leaving him due to the emotional and financial hardship, but she persisted for the benefit of the kids and because her family persuaded her to stay.
Nyoman and his wife made multiple trips to the hospital, but they were unable to determine what was causing the behavioral changes in him or his capacity for thought and reason.
He didn’t discover the solution to the riddle that had been causing him and his family so much suffering until he met psychiatrist Dr. I Gusti Rai Wiguna. Schizophrenia is a severe mental illness that is thought to impact 21 million people globally.
A Gathering That Transformed Life
Dr. Rai realized that more has to be done to support the severely marginalized community of persons suffering from mental health disorders after meeting people like Nyoman. When he learned that one of his neighbors had locked their kids in their bedroom, he was particularly inspired to offer assistance.
There were two of them; one child had a severe mental disability, and the other had schizophrenia. When they were both confined to their rooms, I realized that was my calling.
This lack of knowledge about mental health concerns combined with cultural norms and beliefs has resulted in what is called “pacing” or shackling in the area.
Many people with mental illnesses have been discovered chained up in horrible conditions, and their muscle atrophy often renders them unable to walk. According to a Human Rights Watch study, the number of these instances decreased from 18,800 to 12,800 between 2016 and 2018, primarily as a result of coordinated efforts by outreach organizations and the Indonesian government. However, more must be done.
In 2015, Dr Rai founded Rumah Berdaya, a community where individuals with schizophrenia may congregate, develop self-expression skills, and get volunteer teaching in a new trade, thanks to the support of artist-activist Budi A K Kabul.
Its seventy-six members acquire skills in handicrafts like as baking, painting, incense-making, silk-screen printing, and coconut oil manufacture, all of which enable them to support themselves. Since many of them depend on pricey medications to manage their symptoms, the additional revenue relieves some of their families’ financial burdens.
Having initiated several of these initiatives, Budi recognizes the longer-term advantages that go beyond the monetary assistance.
“Selling the items of our members has a really good effect. It boosts their self-assurance. This is due to their perception that the public values their work despite the stigma associated with schizophrenia in society, he explains.
A Village is Needed
Improving communication between Rumah Berdaya’s members, their families, and the general public is a key component of the organization’s objective. This is especially important to comprehend the intricacies involved in shackling.
Having treated patients who were shackled, Dr. Rai advises against placing all the blame on the family, saying, “I know that the family is also a victim.” They wouldn’t handcuff a family member if given the option. The family locks them up a lot to keep them from hurting themselves or running away. The practice is still in place today, despite the government’s 1977 prohibition on it, endangering the approximately 14 million people who suffer from mental illnesses.
But as Dr. Rai and Budi carry on with their outreach programs to “bridge the gap between family, the individual, and what society can do to help,” hope is in the air. They are still in contact with hospitals, government representatives, and medical professionals to talk about the best ways to treat patients with schizophrenia.
Rumah Berdaya and his family have encouraged Nyoman to start speaking to neighborhood associations. He is one of the four people that the Denpasar City Social Service has employed. Nyoman feels that his new job as the coordinator of Rumah Berdaya “acknowledges that we can integrate with society more naturally.”
As volunteers, family members, and the public dance to a well-known folk song, it’s simple to see a more compassionate and safe community where everyone follows Nyoman’s wife Sri Ayu’s instruction to “be patient, fully supportive, and loving.” She continues, “That kind of family support is really important for the healing process.”
To Concerning Rumah Berdaya
Volunteers at Rumah Berdaya, a community project in Bali, Indonesia, began teaching individuals with schizophrenia life skills in 2015 to assist them in making a livelihood. In addition to giving its members a secure environment to communicate, the organization promotes mental health awareness by helping its members build stronger relationships with their families and the society at large.