Jul 22, 2024 Last Updated 5:22 AM, Jul 16, 2024

Funding for support groups

Published: Jul 24, 2020
Versi Bh. Indonesia
Mental health support groups should not have to fill gaps in Indonesia’s health care system for free

Agus Sugianto

While growing up in Indonesia, I had a deeply traumatising experience as a result of the stigma attached to mental illness and mental disorders. In 1999, I was studying at a college near Tulungagung, East Java, the town I grew up in, while also holding down a full-time job. I hardly had any time to sleep. I was not able to do this for very long, it turned out. I became exhausted, was forced to quit my job, and stopped attending college. After having lost everything I aspired to, I fell into a major depression. I could not go on like this. My dream to graduate from college seemed out of reach forever.

Several neighbours had already told my parents that someone from a poor family like ours should not have such unrealistic goals. ‘No wonder he became depressed,’ they thought. It was very hurtful that they saw me as ‘crazy’. Everybody in the village avoided me – I was no longer seen as a person. One neighbour called me crazy to my face. I was deeply humiliated. I ran away from my village to escape all this. Once I had become completely desperate and no longer knew where to go or what to do, I contacted my parents who came to pick me up.

I was admitted to a puskesmas (community health centre) for treatment. In remote areas in Indonesia, individuals with severe mental illness are sometimes shackled, with their legs placed in wooden blocks in a practice called pasung. In the puskesmas I was chained to a bed for one month. I was completely shattered – my dignity had been taken away from me. It was a deeply humiliating and disheartening experience.

Agus receives his English teacher’s diploma from Tulung Agung / Agus Sugianto.

Fortunately, I managed to survive these deeply traumatising experiences. After my recovery, I was determined to become a mental health patient advocate. Nobody – nobody – should suffer a similar fate. I first joined two groups for consumers of mental health care. The first was the Indonesian Schizophrenia Support Community (KPSI, Komunitas Peduli Skizofrenia Indonesia). Although KPSI refers to schizophrenia in its name, the organisation provides support to individuals with all kinds of mental health problems.

Advocacy

Bagus Utomo founded KPSI in 2001, and he set up the KPSI group on Facebook in 2009. His aim was to provide accurate information about the nature of mental illness, and to assist individuals to find good mental health professionals. The group provides support for all individuals with mental illness, their families, and their caregivers. KPSI has grown over the years and has several branches in several cities in Indonesia. It is now the largest mental health organisation in the country with more than fifty thousand members.

The first KPSI activity I participated in was an art exhibition, held in Jakarta in 2011. Through painting and other art forms, we delivered the message that it is important to eliminate the stigma around people with mental illness. The exhibition was a success.

After a psychiatrist diagnosed me with a mild type of bipolar disorder, I joined Bipolar Care Indonesia (BCI) as well. The members of BCI promote mental health for everyone with bipolar disorder. I frequently participate in the activities of KPSI and BCI as a mental health advocate. I often talk about my journey towards recovery and my fight against the stigma that surrounds individuals with mental illness.

In these support groups, people find support, friendship and an unconditional acceptance. Members of these groups do not judge others on the basis of their diagnoses or past experiences. It was a blessing that I joined both groups. For the first time in my life, I found genuine trust, friendship and support. In these groups, we support each other, respect each other and care for each other.

Supporting others going through the same struggles I went through, and guiding them on their way to recovery has given me new meaning in my life. I am fully committed to be an advocate for issues related to mental health, mental illness, and stigma. I often speak to individuals who have been subjected to pasung, and I fight against the stigma that surrounds mental illness.

Over the past decade, I have spoken at numerous seminars and have given many public lectures to students, civic groups, physicians and government officials. After all, someone has to speak out against pasung, stigma, and the lack of mental health services in Indonesia.

Agus speaking to a group of psychology students at Gadjah Mada University / Centre for Public Mental Health

Ending stigma and eradicating pasung is not just the job of physicians and mental health professionals. All Indonesians must participate. Community groups, physicians, the government, the ministries of health and social welfare, and all stakeholders must collaborate and take action. In Indonesia, most individuals with mental disorders are still stigmatised, judged, and marginalised. Too often, newspapers report that individuals with mental illness have died because of misunderstanding, mistreatment, cruelty or neglect.

Spreading awareness

Most Indonesians do not know about mental illness. Individuals with mental illness are misunderstood and marginalised, and many are still in pasung despite various initiatives to end this practice.

I think that we are beginning to build support among Indonesians for mental health. Several promising events have recently taken place. For example, people are becoming increasingly aware of mental health issues, and the number of support groups is increasing. For example, Into The Light Indonesia focuses on suicide prevention among youth, and Mother Hope Indonesia supports women with post-partum depression. Many have also started to organise themselves into informal groups to support each other in their struggles with mental health.

The Indonesian government has started to recognise the efforts of these groups and others. They are becoming increasingly visible and influential. KPSI, for example, played an important role in establishing the Indonesian Mental Health Law of 2014.

In Indonesia, with a dire shortage of mental health professionals and limited access to mental health care services, support groups are crucial. They fill an important gap, supporting patients and their families by providing essential information on how to deal with mental health conditions. They meet often and organise activities. They have a strong online presence. And, despite a lack of funding, they regularly provide training for caregivers and support for individuals with mental disorders.

Agus Sugianto on campus at Deakin University, Melbourne / Agus Sugianto

Support groups collaborate with volunteer mental health professionals: psychiatrists, psychologists, mental health nurses, social workers, and others. They provide their expertise to ensure that members dealing with mental health problems have access to correct and up-to-date information. They also help members to navigate the health system.

The Ministry of Health involves these groups in their activities and consults with them when they are determining mental health policies, but unfortunately provides no financial support. They receive modest financing from other sources but covering expenses remains a significant problem. In many western countries, mental health support groups tend to be well supported. In Indonesia, they must rely on their own limited resources.

I hope that the Indonesian government will soon recognise the importance of these mental health support groups so that they can continue to empower the people who most need them.

Agus Sugianto (gusagus2010@gmail.com) is a mental health advocate in Indonesia. In 2018, he started an MA in Health Promotion at Deakin University, Melbourne, Australia, supported by an Australia Awards Scholarship. View a short documentary about his mental health journey here.

Inside Indonesia 141: Jul-Sep 2020

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