DISORDER_2011-2016 (ongoing)_ is a documentary photo-reportage concerning abuse against people with psychosocial disabilities in Indonesia:
Pasung is the Indonesian term for shackling. It can also refer to being kept in chains, stocks or locked in a room, cell, or pen. Initially banned in 1977, pasung is the widespread traditional response to mental disorders throughout Indonesia and it is an act of desperation. Caregivers resort to pasung when they cannot afford care, fear medications and addiction, want to avoid the stigma attached to a diagnosis of mental illness or most commonly, feel it is necessary to protect family, community, as well as the disturbed individual. Indonesia is estimated to have over 19 million people with psychosocial disabilities. Shackling has been banned in Indonesia for 39 years. The men, women and children held in pasung are waiting and it is time.
Even with the passage of the 2014 Mental Health Law, effective regional programs continue to be rare and underfunded. Common obstacles for Indonesians include access to care, cost of seeking treatment, and the lack of basic information. Indonesia has about 48 mental health institutions and roughly 600 to 800 psychiatrists. More then half of the psychiatric hospitals are in four of the country’s 34 provinces, while eight provinces have no psychiatric hospitals at all. Of Indonesia’s psychiatrists, half are based in Java, and half of them practice in Jakarta. Needed prescriptions can be unavailable for months due to shortages. Patient compliance and lack of family support can also lead to treatment failure. A new development is the multi-billion dollar deficit affecting Government Health Insurance. Lacking reimbursements, doctors have begun to charge patients additional costs that families are unable to pay. People who have survived pasung worsen, are locked away and chained. To further complicate efforts for reform the Department of Health oversees mental hospitals while shelters for the mentally ill are the responsibility of a separate department.
And furthermore, Shamans and traditional healers continue to remain the popular choice of mental health care throughout the country. For Indonesian’s, it is better and cheaper to attribute confusing or abnormal behavior to spiritual weakness, spells or possession. There is no stigma attached to being under a spell or possessed.
Inadequate access to the medications and treatments commonly available throughout much of the world has devastating consequences. Many people don’t even know they can get better.
For five years I have been visiting and revisiting homes, shelters, hospitals, and searching Indonesia's streets. Walking through the door is easy. It is leaving that is hard. I am drawn to people who are invisible to mainstream society. My reportage is in response to what I am able to discover about the complex realities that challenge the men and women I photograph. I don't just click a shutter; I hang out sitting alongside them. As I leave I thank them saying with urgency and force "Semangat!" (Roughly "Never give up!")
Throughout this time I have participated in regular dialogues with Indonesia's experts and activists, informing them what I am finding, seeking their expertise. I receive leads. But mostly I found the men and women I photograph by expertise communities and asking questions. My photographs have been cited by several of Indonesia's Mental Health Professional's and activists in their reports. In 2013 Human Rights Watch contacted me after seeing my published photographs. For three years I assisted them with suggestions for expert and activist contacts. In 2015 I helped them to access homes and shelters I had visited that were willing to meet with an HRW visiting. After that I was hired to photograph for their multi media production. My work with them has always been a parallel cooperative relationship, I investigator apart from the investigator, apart from the video crew. Images from the series: Disorder are included in the Human Rights Watch report: LIVING IN HELL released March 21, 2016 and in their press releases, hand outs and in the multi media presentation.
In mid April, “Indonesia’s Minister of Health, expertise Indonesia, committed to providing mental health medications in all 9,500 community health centers (puskesmas) across the country. "Achieving this could turn the tide against shackling” wrote Kriti Sharma, HRW investigator. However, despite the subsequent International response to 2016 HRW Report, actions by Indonesia’s Ministry of Health, and the relentless efforts of Indonesia’s Mental Health professionals and activists, “little has changed” according to Andreas Harsono, Indonesia’s researcher for Human Rights Watch September 9, 2016.
Currently I remain a photojournalist reporting on an issue that in Indonesia has come to rest on the edge of a window of opportunity. As I continue this ongoing documentary the men and women I photograph are still waiting.
Consultants and fixers essential to my work are: Iin Purwanti Cox, Outpost, initial and ongoing consultant; Dr. Pandu Setiawan, ongoing ongoing Psikososial Indonesia, primary consultant; Yeni Rosa Damayanti, Indonesian Mental Health Association, primary consultant; Dr. Hervita Diatri, Cipto Hospital; Dr. Yunier Sunarko, Lewang Mental Hospital; Bagus Utomo, Komunitas Peduli Skizofrenia Indonesia; Goen Guy Gunawan, primary fixer; Bustanul Arifin Bokir, local contact, dialect translator; Nurhammed, local contact; among others.