From the Mental Health Movement to the Disability Movement – In Conversation with Yeni Rosa Damayanti

Yeni Rosa Damayanti

LRecently, TCI Asia Pacific spoke with Yeni Rosa Damayanti, Chairperson of the Indonesian Mental Health Association, about her experience with international, regional and national advocacy in human rights for persons with disabilities, the ideologies she aligns herself with and where she sees and hopes to see persons with psychosocial disabilities in the future. 

Yeni has many years of experience working on various issues of rights for persons with psychosocial disabilities and her work has not been limited to the mental health sector, often collaborating and engaging with other human rights movements and the cross disability movement. She is also a member of TCI Asia Pacific and has strongly pushed for a paradigm shift in mental health advocacy to move towards the development sector and disability movement. She has considerable experience with advocacy and has been pivotal in changing mental health legislation to be more CRPD compliant and inclusive in Indonesia. 

With a personal history and experience in the mental health systems in Indonesia, Yeni’s core ideology system is human rights and she is endlessly striving for equal rights of persons with psychosocial disabilities. 

Yeni at the TCI Asia Pacific Bali Plenary 2018

How do you think your work has contributed towards bettering lives for persons with psychosocial disabilities?

We work on the recognition of legal capacity and on the issue of the right to work because in Indonesia if you want to apply for a job in companies or with the government, you have to submit a letter of clearance from psychiatrists that you are free from any mental illness. We also work on issues of reasonable accommodation. Then there are several others including government regulations on disability because we are part of the cross disability movement and we have several government regulations that are drafted and advocated together with other DPOs. So as part of the cross disability movement, we advocate for several government regulations on disability. We put the perspective of psychosocial disability in the drafting and advocacy of government regulations and other laws concerning person with disabilities. 

There are two questions from this response that I am thinking of. One is your experience with the cross disability movement considering that in most countries persons with psychosocial disabilities do not feel that they are really part of the cross disability movement. How did you become part of, how active are you and how welcoming is the cross disability movement? 

It was not that easy at first because they did not see us as as part of the disability movement before the CRPD. I think till 5 years ago, they still hesitated to see us as part of them but the turning point was when we did the advocacy for disability law together since there needed to be representation from each disability group. We had a working team consisting of DPOs (Disabled People\’s Organisation) representing different disabilities and I was representing persons with psychosocial disabilities. And it was while we were working together in advocacy and in the drafting process that we got to know each other better and I think that was the start of the understanding and trust building between us. I think we became part of them when we were doing work together. 

You mentioned that you have a lot of social care institutions in Indonesia. But there was a Human Rights Watch video that I was watching recently which showed people with psychosocial disabilities in Indonesia chained and in shackles. Are you also working on this issue? Can you tell us a little more on this because you mentioned social care institutions but this is people with disabilities who are chained in their own homes.

In Indonesia people are chained in their own homes and they are also chained in social care institutions. So the chaining, we call it here shackling or pasung is happening both in their own homes and in the social care institutions. The practice of pasung has been going on in Indonesia for a long time and our work with this issue is to try to change the direction of how to deal with the people who are in chains especially those in houses. Indonesia has a pre-pasung program or pre-shackling program and it is very medical in nature. What the government does for persons who are in chains or in shackling is unlock them from the chains, take them to mental hospitals and force medication and treatment on them after which they are then sent back home with a bag of medicines. That’s it. There is no social support, there is no economic support, there is no environmental support that the government gives. The only support and the only solution they see for the problem of shackling is forcibly medicating the person and that’s it. We are trying to change that. We are trying to say that the pasung problem is not a one dimensional problem but it is a cross cutting problem that should inform all ministries. It should touch on all the cases including the lack of legal capacity that we saw in them being put in pasung. We also talk about the lack of support – housing and other social and economic support for the person who is in pasung. We are trying to change the direction of this pre-shackling program in Indonesia.

Social Care Institution in Indonesia

Top Left: Yeni presenting the condition of social care institutions at a meeting with the Minister of Law and Human Rights; Top Right: One of the several meetings with the Human Rights Department of the Ministry of Law and Human Rights to discuss solutions to the problems of human rights violations in social care institutions; Bottom Left: Consultative meeting on human rights violations in social care institutions organised by Indonesian Mental Heath Association & Indonesian Commission on Human Rights; Bottom Right: Photo exhibition at the House of Representatives on the human rights violations at social care institutions; 

Tell us about the basic ideology that you follow in your work.

My basic ideology is human rights of course. We see the problem of persons with disability and persons with psychosocial disability from the human rights perspective. Of course the latest human rights approach to persons with psychosocial disability is the CRPD. We use the CRPD as a guideline to our works and our programs in our organisation. 

Do you find it easy to actually operationalise the human rights ideology into real practice. 

It’s very easy actually. It’s very easy. Well it’s not easy to convince people outside of us – outside of persons with psychosocial disabilities. But talking about human rights to people in my organisation and in my networks, those persons with psychosocial disabilities, is very easy because they have experienced all the human rights violations that happen to them every day. The question is how to use this perspective with other people outside the disability circle. This is a challenge. So how do we use the human rights perspective? By leaning on each other in the disability movement so that we don’t face the problem alone. We had problem after problem in the advocacy for the right to vote in the elections. I called for help not only from organisations with persons with psychosocial disabilities but I called for help from other disability organisations. So when we talk about human rights for persons with psychosocial disabilities, I put it as part of the human rights for persons with disabilities. It means that I have support from the disability movement and cross disability organisations. I approached those outside of the disability movement by putting it in the perspective of disability as a whole. So I put the rights of persons with psychosocial disabilities as part of rights of persons with disabilities as a whole. And since the bargaining position or the political position of the disability movement in Indonesia is quite strong right now because of our continuous work, I borrow strength from that. 

We believe you are working very closely to impact the development process in your country. For instance in the housing and political participation and so on. Can you tell us more about that, what you are doing and how it is making an impact.

For political participation, especially the right to vote, we work closely with different sectors and bodies. We worked closely with the Indonesian Electoral Commission and the Indonesian Electoral Monitoring Commission bodies and we also worked closely with other non disability organisations that focused on the election issues. We worked together with the inclusive elections movements. In Indonesia there are several groups and organisations that focus on inclusive elections for persons with disabilities so I worked together with them. We work with other disability groups, we work with other non disability groups, we work with the Indonesian Electoral Commission and the Indonesian Electoral Monitoring bodies so it’s really like a network of different organisations but all of them focus on advocating the right to vote. We managed a few weeks ago to have one big cross sectoral workshop hosted by Indonesian Electoral Monitoring Body that focused and talked about the right to vote for persons with psychosocial disabilities. This is the first time that a national body on election formally and officially talked and also hosted a workshop on the right to vote for persons with psychosocial disabilities. The result of this workshop was sent to the Indonesian Electoral Commission to influence the policies. So we are hoping that in the near future, they will register persons with psychosocial disabilities especially those who live in institutions to be registered as voters. We are quite optimistic that in 2019, in the next general elections, all persons with psychosocial disabilities in Indonesia will be allowed to vote. 

Top: Meeting with the Indonesian Electoral Commission on the Right to Vote of Persons with Disability; Bottom Left: Workshop on the synergy of inter government institutions to fulfill the right to vote of person with psychosocial disability organized by the Indonesian Election Monitoring Body as a result of the intensive lobbying led by Yeni; Bottom Right: Press conference with Bawaslu (Indonesian Election Monitoring Body) on the Right to Vote of Persons with Psychosocial Disabilities;

Have you also done work on housing rights?

We have just started the work on housing. We are starting because this is one of the biggest, biggest, biggest issues that we face. All of my members and networks all say that they want to live independent from their families because whether they like it or not, they face tons of problems within the family. So they want to live independently and also when there is tension with the family, because many of them are looked down upon by their own families and are blamed because they do not contribute economically or financially, when the situation in the house is becoming really sore and sometimes they are kicked out of their own house they really need a place to go but they do not have any housing program or social housing program in Indonesia. When I speak to the people in the institutions and I realise that even though I can fight for their legal capacity in that all people who are put in the institutions are done so with their informed consent and those who want to leave must be allowed to leave the institution, we face another problem which is that they don’t have a place to go after the institution. The families of many of them do not want to accept them any more. The reason the family puts them in the institutions is because they do not want to deal with them any more. So even though they are allowed to leave the institutions, they have no place to go. So we really have to address this housing problem very seriously because this is a step forward towards de-institutionalization and a step towards living independently in the community especially for those who have problems with their own families.

I’m curious to know, do the other disability constituencies also feel that housing is important and critical for them?

Yes we talked and found out that all disabilities have the same issues actually. Many of them are seen as a burden by their families and they really want to leave the house and live independently. But we have just started to do something about housing because the public housing scheme was just recently introduced to Indonesia. The government has started to build public housing flats/apartments in the last few years and so we really would like to get involved in the policy of this public housing. We want to influence the policy to have something like a quota so people with disabilities can be put as a priority to avail this public housing program. But we’ve just started with this. We just realised that this is a very important issue to advocate about. We have always known about this issue. We just realised that we have to work so hard on this issue. We have just started work on this – like meeting with the Minister, with the people in charge of public housing scheme from the government.

There is another issue that I know you feel very passionately for and that is disaster risk reduction and management of persons with psychosocial disabilities. If you could elaborate on it.

You saw the Human Rights Watch video right? And you saw that people with psychosocial disabilities live in shackles in Indonesia. We were very worried about what happened to those people who live in chains during the disaster because I know that in most cases, you have to use an iron saw to free the people from the chains. And there are many people who live in shackles in Indonesia, thousands and thousands, who live in shackles. So we worry about what happens to them during disasters and during evacuation processes. I read that in the Philippines after the Haiyan typhoon hit a few years back, when the relief workers went to the villages, they found people with psychosocial disabilities still in shackles and in chains between the houses and what was left behind. They were left behind in the evacuation process and some of them were found alive among the rubble of the houses, among all the destruction of the houses, they were found there, still in shackles. People left in a hurry during the evacuation process and these people were left behind. I was worried what would happen to them during the disaster in Indonesia especially the ones in institutions. I know after the tsunami in Indonesia in 2004, the highest number of victims was in mental hospitals in Aceh because they were locked in and when the tsunami hit they could not escape. So I really worry about the fate of persons with psychosocial disabilities who live in confinement or in chains or are locked in during the time disasters hit. How do they escape? Are they left behind during evacuations? If they are getting help, where do they put persons with psychosocial disabilities in the refugee camps? What situations are they put in? These really worry me and people never think about this and the fate of persons with psychosocial disabilities. It’s really worrying me a lot. I really want to investigate and make a report of what is happening to people with psychosocial disabilities during and after the disasters. Mostly the relief programs work on the trauma experienced by people after the disaster but they never touch the issue of people who already have a psychosocial disability before the disaster and what happens to them during and after the disaster is my main concern. 

With the very vast experience you have of working with persons with psychosocial disabilities, would you like to share any learnings for others who are working in the cross disability or psychosocial disability sector or for anyone?

My learning is that we will have a stronger, much much stronger position if we are part of the disability movement. Before, I was within the mental health movement, the medical model movement and I felt that we were very weak, ruled by psychiatrists and we did not have a political position or political power and any bargaining position. But when we are part of the disability movement and we draw strength from all disabilities contentions like the CRPD and all other regulations related to disability, then we are much more powerful. First in terms of political power, in Indonesia at least, we have way more bargaining position and secondly, when we were part of the mental health movement, only one aspect of our lives were addressed which was the medical aspect. The medical movement never touched other issues that we talked about before – right to vote, housing, right to legal capacity, etc, those were never part of the mental health movement but they are critical issues within the disability movement. My key learning is that persons with psychosocial disabilities must put themselves within the disability movement instead of under the mental health discourse or mental health movement. 

Unfortunately, there’s still many people with psychosocial disabilities that are stuck within the mental health approach and not yet becoming part of the disability movement. That’s very unfortunate. 

Why do you think people with psychosocial disabilities are not joining the disability movement?

I think because many of them are stuck within the patient movement and they are too close to the psychiatrists and adopt the way of thinking of the psychiatrists. They’ve been hegemonized by the medical model and they find it safe because some psychiatrists are befriending them and they feel that it is nice to rely on the professionals rather than rely on themselves but the most major reason is because they have not yet been in touch with the disability movement.

What is your dream for persons with psychosocial disabilities in your country?

My dream is for them to live according to their wishes and be included by the community, be a part of the community and society and live their lives to the fullest as equals with others. I think that’s a dream of all of us. 

Anything more you want to share with us?

I would like to talk a little bit about TCI Asia Pacific. For me, TCI Asia Pacific is the think tank. As you know, in Indonesia we were a very medical model and we had no examples of how to put ourselves and advocate and analyse our situations from the human rights perspective. There was no partner to discuss this with in which we analyse and look at our situation together. I found that in TCI Asia Pacific, I sharpened my analyses and exercised the ideologies. It is like the brain for me, the think tank. It’s there that I found the guidelines, the perspectives, which position I should take. TCI Asia Pacific meetings are very beneficial for me. 

Top: Public discussion on reasonable accommodation at school and workplace for persons with psychosocial disabilities organised by Indonesian Mental Health Association; Bottom: Celebrating International Women’s Day (March 2018) hosted by Indonesian Mental Health Association;

Top: Public discussion on reasonable accommodation at school and workplace for persons with psychosocial disabilities organised by Indonesian Mental Health Association; Bottom: Celebrating International Women’s Day (March 2018) hosted by Indonesian Mental Health Association;