“My parents thought I was possessed — they used to put garlic and salt on my body to rid me of evil spirits,” Erifah, 49, who lives in Jakarta, told me. Erifah started having symptoms of schizophrenia affective disorder when she was in the sixth grade, but her mother told her: “You’re just a child, don’t act crazy.” Due to a lack of education and awareness, Erifah’s parents did not seek mental health care.
“I only began seeking help after starting a family,” Erifah said. “First I went to a Rukia [spiritual healing center], where a Muslim religious leader used to read out prayers. When I felt no improvement, I started going to another Rukia, where they gave me cassettes with verses of the Koran. Many years later, I went to a doctor, who told me to go to Grogol hospital [Jakarta’s main psychiatric hospital] but I thought, ‘That’s for crazy people!’ so I didn’t go.”
Erifah is one of over 19 million Indonesians with psychosocial disabilities. Many, like Erifah, first consult faith or traditional healers and seek medical advice as a last resort. That’s because people with mental health conditions routinely fall victim to stigma and discrimination.
“I tried once or twice to join people sitting and chatting around the neighborhood but whenever I tried to join the conversation, people would start leaving one by one,” Erifah said. “So I stopped going out. I spend time by myself, working and staying at home.” Erifah is now an activist and advocate for people with psychosocial disabilities, working with the Indonesian Mental Health Association (PJS) and a peer support group called Unit Informasi Layanan Sosial.
Even for those who seek help, the striking lack of availability of and access to appropriate mental health care in Indonesia are serious obstacles to proper treatment.
Indonesia has only 48 mental health institutions and about 600 to 800 psychiatrists. More than half of the psychiatric hospitals are in four of the country’s 34 provinces, while eight provinces have no psychiatric hospitals at all. Due to the severe shortage of community-based mental health services and other support for people with psychosocial disabilities and their families, families resort to shackling their relatives with these disabilities.
Despite a ban on shackling — known as pasung — since 1977, the practice continues. According to the Health Ministry, nationwide more than 57,000 people with psychosocial disabilities, the majority in rural areas, live their lives in chains rather than having access to mental health care in their communities.
Indonesia’s new Mental Health Law, approved by parliament on July 8 to address the country’s dire mental healthcare situation, is in some ways a major step forward in addressing the treatment gap. The law is an attempt at bringing national legislation in line with the international Convention on the Rights of Persons with Disabilities, which Indonesia ratified in 2011.
The Mental Health Law puts the onus on the Indonesian government to provide mental health services from the national to the local level. It integrates mental health into general health services and makes available affordable drug treatments for people with psychosocial disabilities. The law also calls for training more mental health professionals.
The law emphasizes accessible community-based services, government monitoring of the licensing of facilities and setting standards for care. It guarantees a right to “honest and complete information on a person’s mental health data,” and to protection from neglect, violence, and exploitation. The law also includes provisions for raising awareness and reducing stigma and discrimination toward people with psychosocial disabilities, including encouraging the mass media to project a positive image of people who live with psychosocial disabilities.
Most important, for the tens of thousands of Indonesians with psychosocial disabilities who spend their lives shackled instead of getting community-based mental health care, the law provides accountability for abuses, including pasung.
Despite these advances, the Mental Health Law does contain some potentially problematic provisions. For example, it allows other people to approve the medical treatment of a person with a psychosocial disability, if the person is deemed “incompetent.” It also allows medical personnel to force treatment on a person whom they deem “may endanger” themselves or others.
Both of these provisions could lead to abusive treatment. Informed consent is a bedrock principle of medical ethics and international human rights law, and forcing people to take medicine or undergo treatment without their knowledge or consent, except when the patient’s life is in imminent danger, violates their rights. The same rule should be applied regardless of whether the person has a disability.
Under the CRPD, anyone with a disability — including those with psychosocial disabilities — has the right to make decisions that affect their life. Those decisions range from voting and buying property to marriage and consenting to health care. This right to legal capacity may not be denied based on a medical diagnosis. Instead, the Indonesian government has an obligation to provide support services that enable a person to make these decisions or express their will and preferences and to respect those decisions.
The Mental Health Law is an important first step in addressing the severe deficiencies in Indonesia’s mental health care system. Erifah and the tens of thousands of other Indonesians who unnecessarily suffer due to those failures are counting on their government to address the Mental Health Law’s inadequacies and to help break the shackles of stigma and inadequate mental health care that plague Indonesians.