Human rights of people with mental health problems: Reflections from field/film-work

To mark this year’s WMHD, the Mental Health Innovation Network is running a month long series (#WMHD2015 Blog Series) highlighting dignity in four areas of global mental health where dignity is most often compromised and/or redeemed. This week’s subtheme is “Human Rights and Ethics”. 

Share this blog on social media using the hashtag #WMHD2015 and our Twitter handle (@mhinnovation), and join the conversation by commenting below.

Dr. Erminia Colucci is a Lecturer at the Centre for Psychiatry, Wolfson Institute for Preventive Medicine, Barts and the London School of Medicine and Dentistry, Queen Mary University of London and Honorary Research Fellow at the Global and Cultural Mental Health Unit, Centre for Mental Health School of Population and Global Health, The University of Melbourne. She is also the Founder of Movie-ment. Contact her on Twitter or through email.

The practice of physically restraining people with a mental illness by members of family or the community, almost invariably with no adequate treatment and generally against their will, contravenes basic human rights principles. As result of this practice, thousands and thousands of people are estimated to live in isolation, chained, and/or inside “animal cages”, naked, undernourished and often living in their own excrement. The mental and physical consequences of these conditions (e.g. some people lose the ability to walk as result of lack of movement or die) are enormous.

Understanding pasung in Indonesia

These practices, known in Bahasa as pasung, are widespread in Indonesia as in many other low-middle income countries (LMICs). A few years ago, I embarked on a ‘journey’ to Indonesia, with the support provided by the Global and Cultural Mental Health Unit, University of Melbourne and the Granada Centre for Visual Anthropology, University of Manchester. 

The reason why I went to Indonesia, instead of other LMICs with similar practices, was because Indonesia is unique in having a plan to scale up the Bebas Pasung (Free from Pasung) program at a national level. This program, which locates and releases victims of pasung and arranges treatment, represents a major mental health and human rights advance. The Indonesian Ministry of Health had committed to ending pasung throughout the country by 2015, although this date has now been moved to 2017. 

In the ethnographic photo/film-documentary project ‘Breaking the Chains’, I aimed to contribute to an understanding of pasung. Some questions I sought to answer were: “Why do some family and communities resort to chains, cages and other ‘abusive’ practices to deal with the mental illness of their loved ones?” and “How can this situation been changed, what is needed to eradicate this form of human rights abuse in Indonesia and what can we learn from Indonesia that might help in eradicating these practices in countries all over the world?” 

I was blessed to be able to work closely with Komunitas Sehat Jiwa (KSJ), a small organization, which is co-lead and run by people with mental health problems.  The most challenging part of carrying out this project, where I was the researcher, camera and sound person, and later editor and distributor, were the awful conditions in which people with mental health problems were kept and realizing that it was not just them that were suffering but also their families and communities too. 

The brutality of these acts was not paired by the brutality of the people who force these acts upon the mentally ill. The reality was different, these were families and communities that were located hours of walking from the only psychiatric hospital in the whole area of Cianjur. These were poor families who had no understanding about mental health or understood their symptoms as signs of jinn (spirit) possession and had no resources to assist the person as they spent most of their time in the fields. These were families who were concerned about their loved ones, for their own safety and possibly for the safety of their neighbours and their properties. 

One of the main activities that KSJ engaged in was to enter into these families’ lives and gently shift their understanding about mental illness, without fighting against a spiritual belief that enforced and supported these practices but offering them another explanation, an alternative way. As Indonesia, as most LMICs, has very limited resources in terms of mental health trained professionals or community workers, the solution KSJ had to offer was mainly pharmacological but they always made sure the family understood that medicines were only a ‘first step’ and they needed to treat the person differently, with dignity, with love.  

Next documentary project location: the Philippines 

After I filmed “Breaking the chains” I went to the Philippines for another ethnographic documentary project on violence against women and suicide. During my fieldwork, I was told about a man who was also kept inside a small room outside of his family house because of mental health problems. Together with the psychiatrist I was working with (Dr Dinah Nadera, co-founder of AWIT), we went to visit this person and check if we could provide immediate assistance. 

The conditions in which this man lived were very similar to those I was faced with in Indonesia. What was different though was that this man lived in a small island that was destroyed by typhoon Yolanda. Several well-known international organizations had visited that island, in fact one of them was there during our visit and there was some celebratory event organized by them. Yet, these organizations had turned a blind eye on the life of this man as he was mentally ill and mental illness was not a part of their ‘mission’. 

The family of this man, in tears, showed me and my camera the plaque left on their rebuilt house. It indicated the name of the organization that had financed it and the number of houses they had rebuilt at that point. Yet, when this family had asked this same organization to help building a safer structure for this man, who had also appeared naked in a small animal cage in a film featured by the Guardian, the organization refused as it was ‘outside their mandate’. The family had then gone around the village and collected leftovers at the building site to be able to build a small room for this man that would protect him from rain and sun and kept going on with just feeding and cleaning him, without any treatment options. Who was the abuser here? Was it the poor family consisting of his young wife and children, their very poor economic situation and educational resources?

Why are WE turning a blind eye?

Since embarking on these projects about human rights and mental health, I have developed empathy for the families of the people I met along my journey as I have understood their struggles and the lack of means that would allow them to relate differently to their son, husbands, sisters, etc. But I am unable to understand why WE are turning a blind eye? Why have Western international organizations specializing in ‘developing countries’ and ‘human rights’ generally neglected the plea for help of the millions of people who are suffering, and with them whole communities, for their mental health problems? Why are WE, civil society, so keen to hear and engage with stories about someone who has a mental illness engaging in a violent act (e.g. school shootings or airplane crashes), which the media twists and sells for their gain. And why do WE turn our heads on the much more frequently occurring instances where those who have mental health problems and/or are suicidal, end up as victims of a wide range of human rights abuses and violence, sometimes also inside our modern hospitals?

What makes the life of someone who is struggling because of mental health suffering less worth of dignity and compassion than other lives?

These are the questions I cannot answer and am unable to understand, as a mental health researcher and lecturer, a mental health advocate and someone who has had mental illness in her own family.

Related resources: 

To find out more about ‘Breaking the Chains’ and pasung, visit: 

“Free from pasung: A story of chaining and freedom in Indonesia told through painting, poetry and narration”, co-written by a pasung survivor who is now a mental health advocate, artist and English student: 

Image courtesy of Valentina Iemmi. Copyright © 2015 Valentina Iemmi. All rights reserved.

Human rights
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