A personal story of caring for society’s most vulnerable
Anke Felicitas Boeckenfoerde
‘Why are you here in Indonesia?’ people often ask me. To be honest, it is not an easy question. But surely the answer cannot be given without these two words: Love and Madness
MADNESS. Would you not laugh at someone’s decision to lead a life full of uncertainty, far beyond their comfort zone, in a tropical climate and an unfamiliar culture in a huge city with ample air pollution and chronic traffic jams? Even more so if you know that she loves nature and that, in a previous life, she used to ride her bicycle every day? What could possibly motivate someone to give up the financial stability that a psychiatrist earning a regular income in a German mental hospital has? To take up a life where she must pay an annual fee to the immigration authorities for her residence permit? Isn’t it sheer madness to start the open-ended and exceedingly difficult process of applying for a permit to be allowed to work in Indonesia as a psychiatrist, especially when there is not even a single medical doctor from abroad who has this permit? And not to mention the huge effort of learning a new language from scratch.
Clearly there must a good reason why I left all that comfort and security behind. There is no better word than LOVE: Love for this diverse country, Indonesia, with its welcoming culture of kindness and hospitality. There is always a helping hand, a smiling face, and a cheerful voice that greets me. People seem suffused with spirituality. I am grateful for the opportunity to participate in this diverse community with is many ethnic, religions, and cultural groups, especially at Atma Jaya Catholic University where I currently work. Outside Jakarta, I am often deeply touched by the breathtaking beauty of this country with its green rice terraces, volcanic landscapes, lonely shores, and thick, tall, old trees, and so much more.
LOVE. Since I was a child, I have felt love for sick people living at the margins. It has always been my goal to become a doctor for those who do not have access to medical care. To practice where there are no doctors is just a logical consequence of this ideal.
I became a psychiatrist after realising that mental illness is one of the most neglected health problems in the world and that it is still a taboo in most countries. Psychiatry holds a mirror up to society and provides insights into social and cultural issues. More and more, I realised that God gave me a loving heart for people who suffer from depression, psychosis, addiction, personality disorder, and other problems. Ever more, I believe in God’s presence in these vulnerable people.
After ten years of working in a German mental hospital as a medical doctor specialising in psychiatry and psychotherapy, my congregation asked me to go to Indonesia for a short visit. In different areas of Indonesia, I met several people with mental illness. One of them was Sarah*. She lives on Flores, one of Indonesia’s largest islands, which is located in the province of East Nusa Tenggara (NTT). The majority of the population is Roman Catholic. Many of the island’s regions are underdeveloped and the poverty rate is high.
We are on the way to meet Sarah, a 33-year-old woman living in Flores. We follow a steep asphalt road until we have to leave our jeep behind and walk for the last few kilometres. We climb a steep hill to get to a village located on the slope of the mountain. From far away we hear a woman crying – suddenly, however, it sounds as if she is laughing. The village is in a very poor area with only a couple of small, dilapidated houses. When we arrive, we meet Sarah, who is sitting alone in front of a house.
Sarah’s left foot is tied to a tree trunk, which is about two meters long and very heavy. Her parents died several years ago, and her brothers moved far away for work. Sarah has three children who live with the families of their fathers. Six years ago, the village elders decided to restrain her (pasung). People were afraid of her and thought that she ‘was possessed by an evil spirit’. Sarah often laughs without reason, talks to herself, or takes her clothes off in public.
When we start talking with Sarah she seems quite irritable, but she appears to understand our questions. Most of her answers appear to be adequate. Until the day of our visit, Sarah has never been seen by a physician or a nurse. When we are about to leave, she starts weeping bitterly. Holding her in my arms made her slowly calm down.
Misery and hope
Sarah is just one of over a hundred people who have a mental disorder and are physically restrained whom I have met in Flores over the last four years. Some of them hold a special place in my heart. Many have already been released from their restraints because of the work of highly committed local groups such as the Brothers of Charity (FC), which established a rehabilitation centre and a clinic for individuals with psychosocial disabilities in 2014. This centre is named Renceng Mose and it is the only medically based rehabilitation centre for men and women on the entire island.
One of the most powerful supporters of lay people in Flores is the community support group KKI (Kelompok Kasih Insanis; Group Caring for People with Mental Disorder). In February 2016, KKI was founded in Ende, a larger village in Central Flores by a Catholic priest, Avent Saur, SVD (Societas Verbi Divini). This group aims to provide for the daily needs of people who are forcibly restrained. P. Avent’s community group has built bridges between patients and the health system and is raising awareness about mental health issues in the community. In Maumere, one of the larger cities in the eastern part of the island, the Camillian Priests and the rehabilitation centre Santa Dymphna are also committed to take care of mentally ill people.
Germany, my home country, has an inglorious history of treating people with mental disorders during the Nazi regime from 1939 to 1945. Many patients were restrained and more than 300,000 were killed. Today, in the western world, physical restraint is only resorted to in institutions, whereas in low-income countries, coercion and restraint are mainly used in family settings. Fortunately, in the last several years more research has been conducted on pasung in Indonesia. Despite the many words that have been written and spoken on this topic, the problem is far from being resolved.
Pasung literally means ‘to tie or bind,’ and many varieties of this inhumane practise are used. The most common methods in Flores include wooden blocks, ropes, and the confining of people in closed spaces. During the last several years, as I saw more patients in pasung, the more I understood why families resort to this practice. In remote areas there is no alternative; families feel overburdened and abandoned. Concerns about the risk of harming other people, self-harm, running away, and shameful behaviour – such as Sarah taking of her clothes off in public – are some of the reasons families to put their relatives in pasung. Because most people think that their relative with a mental disorder is ‘possessed by a supernatural power or evil spirit,’ they also consult spiritual healers. In regions where access to mental health care and other support services is difficult if not outright impossible, medical advice is sought only as a last resort.
Flores has only one psychiatrist for almost two million people, and mental health is not recognised as a priority by local health officials.
Furthermore, poverty plays a big role. Lia*, a mother of a mentally ill boy in pasung, told us: ‘As a family, we have to decide to buy a sack of rice or to spend this money to transport him to a doctor and buy medicine for our sick son.’ It is not just that poverty makes people ill, but also that illness often results in poverty.
The Ministry of Health of the Republic of Indonesia realises that pasung is an ‘inhumane’ and ‘discriminatory’ treatment for people with mental health conditions, that it violates human rights, and that it has an immense adverse impact on their health. The government has launched several programs to promote mental health and end pasung, including a program called ‘Indonesia Free from Pasung 2014’ (Indonesia Bebas Pasung 2014), which has now been extended to 2030. Furthermore, a lot of additional regulations for the elimination of pasung have been issued during the last few years.
‘Why are you here in Indonesia, Sister?’
As a psychiatrist who is concerned with the wellbeing of the mentally ill, it is painful to witness their suffering. But how to respond to these needs as a ‘bule’ (white person) from a different culture and without a work permit? Anna Dengel, the foundress of my congregation, proclaimed: ‘If you really love, you are inventive … if you really love … you try to find out.’
The Jiwa Merdeka training program
One outcome of our work on Flores is the Jiwa Merdeka (Free Minds) training program. I am grateful to Atma Jaya University for supporting my vision of a pasung-free Flores. Staff members from the Faculty of Psychology and the Faculty of Medicine, together with psychiatrists from the Community Psychiatry Section of the Indonesian Psychiatric Association (PDSKJI), have developed a program, named Jiwa Merdeka, to respond to the needs of mentally ill people in pasung on Flores. This Mental Health Awareness Empowerment program is a collaboration between the local Health Office and other stakeholders in Flores. It is part of a research project by investigators from both Faculties, and provides training to health professionals and caregivers to increase their knowledge about mental disorders as well as their management and treatment.
Releasing individuals from pasung alone is not enough. This is only the starting point for developing an effective and sustainable mental health system that is free from stigma, discrimination, and humiliation.
Only in collaboration with committed stakeholders can we strengthen the community mental health services and prevent anyone undergoing pasung. Only then can individuals with mental disorders, like Sarah and many others, fully participate in social life and become valued members of the community.
Ayo! Bersama kita bisa!
*names have been changed
Anke Felicitas Boeckenfoerde (firstname.lastname@example.org) is a German psychiatrist and psychotherapist, and a member of the congregation of Medical Mission Sisters. Since 2016 she has lived in Indonesia and is associated with the Faculty of Psychology at Atma Jaya Catholic University in Jakarta.