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Disability as an Intersectional Human Rights Movement – An Interview with Janice Cambri from the Philippines

Janice Cambri

TCI Asia Pacific recently interviewed Janice Cambri from the Philippines. A survivor of psychiatry, her personal history is what propelled her to become a disability rights activist. She founded the first advocate group for persons with psychosocial disabilities in the Philippines after being introduced to the CRPD and TCI Asia Pacific in 2014. She works with a strong identity of a self advocate and draws from her own experience to work towards ending human rights violations of persons with psychosocial disabilities. 

A long time leftist activist, it is Janice’s alliance with the leftist movement in the Philippines that has helped shape her intersectional point of view when it comes to understanding disability. She is a strong advocate for more discussions on capitalism and it’s effect on driving the biomedical mental health systems. For many years now, Janice has been involved in national, regional and international level advocacy not only for the rights of persons with psychosocial disabilities but also for the cross disability movement and national political leftist advocacy, often working at the policy level. As a member of TCI Asia Pacific, she has been a strong advocate of the importance of working on intersectional frameworks within the disability movement. 

Tell us about yourself and the work that you do. 

I am a self-advocate. I am the founder of Psychosocial Disability-Inclusive Philippines. It is the pioneer and sole CRPD inspired advocacy group as well as the first to be recognized as the representative organization of our sector by the national government. I am also part of Anxiety and Depression Support Philippines which is the largest online peer support community in the country. Since mid-2014, I have been serving as resource speaker for psychosocial disability in disability sensitivity trainings for government employees and commercial institutions initiated and conducted by the National Council on Disability Affairs, an attached agency of our nation’s Social Welfare Department. I do cross-disability advocacy as member of the Philippine Coalition on the CRPD. And I also work closely with Psoriasis Philippines(PsorPhil) and the Deaf. I have been instrumental in reclaiming our rightful place in policy making concerning us and in bringing the voice of the CRPD into the mental health legislation. I am a member of the steering committee of TCI Asia Pacific. 


Janice in a disability sensitivity training for employees of Department of Labour

Can you share with us a little bit about your journey and how you joined the disability sector?

I was a naive user of psychiatry for 12 years starting 2002. I was completely unaware of the medical versus human rights model dichotomy though I have been a leftist activist since 1999. Toward the end of 2011, I was invited by peers from the cross disability movement to join the Philippine Coalition on the UN CRPD. At the time, the group did not have any member who had psychosocial disability and had been looking for the longest time. One of them saw my letter to the editor on a newspaper regarding the national mental health institution and immediately reached out. However, I was not steered into the direction of organizing a group for our sector even after the country mission in the Philippines led by then TCI Asia in 2012. Instead, I became part of the Deaf community working as a college professor for the Deaf the same year. Since I was recruited by the Coalition, I never received any formal training on the CRPD. I genuinely understood our cause only after attending my first plenary with TCI Asia in late 2014 in Thailand where I got to meet other mental health and disability activists from other countries in Asia. I was the only one who was not part of an organization of persons with psychosocial disability and I vowed that I would form one when I came back home and I did. 


Top: Janice at the TCI Asia Plenary meeting in 2014 with other members of TCI Asia; Bottom; Janice with the Philippines UN CRPD Coalition at the first CRPD review meeting of the Philippines in Geneva,

What are the basic ideologies that you follow in your work?  What drives you to think this way and do this work?

I bear both ideologies from the Left and the human rights model to disability which makes for a great combination. I have been a National Democratic activist for 19 years and we were trained to fight oppression, most especially the systematic ones. I know that a lot of mental distress stems from political, social, economic, and cultural determinants which are also the root causes of why majority of my countrymen are buried in poverty. Capitalism is the main driver of pharmacological treatment becoming the first line of care in mental health. It is behind the insistence of watering down mental health issues as products of a broken brain rather than a direct result of the havoc capitalist exploitation wreaks on millions of human lives. This is the discourse that needs popularization because it is absent in most discussions on mental health and disability. On a personal note, I fell prey to the medical model and coerced medication, a blatant violation of my right to informed consent simply because I did not know any better. I suffered massively from the adverse effects of psychotropic drugs that almost ruined my life. I wish to prevent others from enduring the same fate. I want them to know they have choices and that it is our human right as enshrined in the CRPD. 

Can you elaborate on the intersectionality between psoriasis and psychosocial disabilities? 

Persons with psoriasis tend to develop mental health issues such as depression, anxiety, and suicidal ideation because of their condition and the severity of discrimination they face from majority of the people who are oblivious to their illness. Psoriasis is an incurable excruciating, debilitating chronic auto immune disease that does not only affect the skin contrary to popular belief but causes other co morbidities such as obesity, diabetes, arthritis, hypertension and higher cardio vascular risk among others so they also may develop physical or orthopedic disability and visual disability later in life. Because one of the major symptoms appear on the skin, it is often mistaken for being contagious or a hygiene problem so people get away from them or treat them with disgust. Some of these painful experiences they endure due to prejudice include being called hurtful names; being quarantined at the airport; being refused services such as spa, haircut or a taxi ride; and being asked to get out of public pools. There are also instances of being abandoned by their spouses or partners. In a world where physical look is given a high premium, most persons with psoriasis are put at a disadvantage. Their choices for treatment are expensive consequently making their out-of-pocket costs high since the government allocates a measly budget for health. Since 2015, I have been privileged to be part of Psoriasis Philippines, the leading organization of the psoriasis community and have helped pave the way for them to embrace their disability identity and be included in the cross disability movement. 

Above: (Far right) Janice on World Psoriasis Day 2018 campaigning for full CRPD compliance for persons with psychosocial disabilities with a cross disability group Psoriasis Philippines. 

We know you have some experience with campaigning for the CRPD in the mental health legislation in the Philippines. Can you share with us what that was like?

To describe it as an uphill battle would be an understatement. I was practically late in the game. Proposed legislation started way before my time. There was no psychosocial disability organization let alone a movement. Though there were patient organizations, these were usually led by mental health professionals and were clinic or hospital based. Peer support groups were hiding online. The doctors who drafted and lobbied for the bills had all the advantages while we virtually had no machinery to fight. I had no training on CRPD. My organization was at its infancy. Early the following year, I was already in the thick of the fight, writing position papers against the Mental Health bills which contained provisions contravening the CRPD, taking them door to door to senators and congressmen’s offices and talking to our Commission on Human Rights and other concerned agencies. The Bills were ignored during the 16th Congress only to be resurrected in the next one in 2016. Together with Dr. Liza Martinez, a colleague from the Coalition, we fought tooth and nail during the Congressional deliberations invoking the CRPD and other pertinent U.N. documents. We even drafted a substitute Bill if only to counter the current ones. Fortunately, we could rely on inputs of seasoned activists abroad that we consulted. The panelists and legislators in the hearings were shocked that we were criticizing the Bills and that sentiment trickled down among peers and other persons with disabilities who were laboring under the illusion that the legislation was completely to our benefit. In the end, the railroaded Mental Health Law was enacted this year with some of our comments being incorporated. To date, we continue to narrow down the opportunities for oppression by actively participating in the drafting of the law’s Implementing Rules and Regulations set to be released in January 2019. The review of the Mental Health Law became part of the recommendations in the Concluding Observations of the UN CRPD Committee to the Philippines as a result of our parallel report and personal engagement during its first Constructive Dialogue in Geneva, Switzerland last September. It has been extremely trying to the soul. It was exhausting and traumatizing but was definitely worth it. No one can say that we did not put up a good fight and I am proud that we did given the odds stacked against us.

Above: Janice at the Senate hearing on the Mental Health Bill in 2017;

What are the challenges you face advocating for human rights for persons with psychosocial disabilities in the Philippines?

The stigma remains high. For most peers, it is not easy to come out as person with a psychosocial disability let alone do public advocacy. Even among other persons with disabilities we face exclusion. That was a tragic reality I faced during the Mental Health legislation struggle when even supposed CRPD anchored and more seasoned disability leaders abandoned us even when the CRPD was under attack. A lot of peers remain under the huge influence of the mental health professionals and the medical model is the status quo. The nature of our disability also makes it difficult to organize the sector. Most times, physically gathering them together is a herculean task. It does not help that the social movements, including the wider human rights movement, have not embraced the disability cause. My personal limitations also come into play. Doing advocacy work in the last 4 years exacerbated my own mental health condition. The bleak human rights situation under the current government administration and its willful dismissal of its mandate to champion the interests of the majority is also compounding the problem which puts more people at risk of developing mental distress and psychosocial disability.

How has your work with the cross disability movement affected your work with persons with psychosocial disabilities?

It definitely shaped my appreciation for the struggle. Because it enabled me to understand common grounds with other disability constituents, I get the bigger picture. It made me understand that mental health issues are not exclusive to us who were given psychiatric diagnoses. It molded me to be more inclusive. I, myself, am a mother to a child with learning disability so I learned empathy early. My engagement with the cross disability movement also taught me how it is crucial that I educate my peers about the plight of those with other types of disability and what our similarities to them are. My contributions to the passing of the Filipino Sign Language and the inclusion of persons with psoriasis in the government disability social protection program and cross disability movement would be good demonstration of this.

Above: At the Senate Hearing before passing the Filipino Sign Language Bill; 

What do you hope for persons with psychosocial disabilities in your country?

I hope that they get wind of the disability and human rights perspective and be part of advocacy. 

How has TCI Asia Pacific contributed to your work in the Philippines?

TCI AP facilitated my capacity building as a psychosocial disability advocate which helped establish my credibility. It gave me tools for analysis and has been significantly influential in the position I take in advocacy. The organization also enabled me to expand my network and exposure outside Asia which has been extremely valuable in gaining wisdom. This and the lessons from the learning sessions and brainstorming during plenaries and meetings came very handy during the fight against the Mental Health legislation. It is my tribe. Meeting the members reinforces my will to continue the work which could be a very lonely endeavor at times in the Philippines. 

Top: Janice at INTAR India 2016; Bottom: (Top row, second last, far right) Janice with TCI Asia Pacific’s Steering Committee meet in 2017


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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;

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#WhatWENeed Tonga

#WhatWENeed in Tonga


Colonialism and Tonga

Tonga was never colonized by any country. It did not have a mental health law until 1992. However, it had ‘friendship’ status for 70 years with Britain. It was a British ‘protectorate’ from 1900 until 1970, when it attained full Independence. It always retained its political sovereignty; However, many of its land, foreign, tax, trade, and various other civil policies were derived from the British. Therefore, along with other erstwhile British protectorates and colonies in the Asia Pacific, Tonga is a commonwealth nation. Following the exit of the British in the 1970s, Tonga reinstated monarchy. It is the last Polynesian monarchy in the Pacific Islands. In 2010, the Kingdom of Tonga became a constitutional monarchy rather than being an absolute kingdom [1].

Development Linkages in Tonga

TCI Asia Pacific advocates that the action field for persons with (psychosocial) disabilities is not the ‘mental health’ sector, but the ‘development’ sector. Tonga comprises of 169 islands, of which 36 are inhabited. It has a population of around 103000 people, of whom majority live in Tongatapu, the main island. Tonga is classified as ‘Lower\Middle’ income country by the World Bank, in their classification of 2016 [2]. The economy is aid dependent. Most aid assistance for Tonga comes from Australia, New Zealand and Japan. Environment, climate change, energy, agriculture, are attracting bilateral funding. The state continues to be the dominant service provider in the kingdom. There is no social protection scheme in Tonga, traditional social systems, extended family system and kinship ties however act as safeguards for socio-economic adversity that individuals and families may be facing. NGOs exist and women’s empowerment is negotiated by the WIDC, which works from within the Prime Minister’s office and is involved in development activities and political decision making. 

Needed: Disability in Development and Abiding by International Commitments 

There are 3 national disability organizations, trying to work out co-operations among themselves and with larger movements. However, there is no motivation as the CRPD is not ratified yet. There is a good presence of UN Bodies such as UNDP who have contributed to development projects in Tonga, and also the WHO, with a health focus. Tonga has a history of signing international conventions and treatises, however, ratification is pending on several. CEDAW, now, remains to be ratified. Tonga has signed, but not ratified the UN-CRPD. Psychosocial disabilities and mental health remain on the fringes of policy and of the cross disability movement. There is a national disability policy; as well as an Ombudsman as a process under the Public Relations Act.

Needed: A Social Model of Support for Persons with Psychosocial Disabilities[3]

One of the reasons that TMHDA invited TCI Asia – Bapu Trust in October of 2017 was to share a community/arts based/support perspective into their public discourse on mental health. The mental health system is still very much medical in model with no other available community based services. A provision of services is mandated by the Mental Health Act 1992 (Kingdom of Tonga, 2001c). There are no large, warehousing type of mental asylums as usually found in the Commonwealth. Tonga’s main and only psychiatric unit is attached to Vaiola Hospital (located in the capital city Nuku’alofa) and is a general hospital psychiatric unit (GHPU). However it has been called a “hotch-potch mini institution” by the senior psychiatrist Mr. Mapo. The unit is staffed by a medical officer, a mental health welfare officer, psychiatric assistants and a social worker, and is headed by the region’s senior psychiatrist, Dr. Mapo. He has been appointed as Tonga’s national focal point for mental health and disability by the Prime Minister. The facility has 12 beds, although it frequently exceeds this number of patients. The unit works to “medically rehabilitate chronic psychiatric patients” through outpatient review, continued psychosocial rehabilitation, home visits and “medication on wheels”. The most common reasons for admission are ‘schizophrenia’ occurring in almost one in every two persons followed by ‘bipolar mood disorder’ in roughly 30% of persons.

WHO Regional Office for the Western Pacific reports that many Pacific Island countries have suicide rates which are higher than the global average (WHO-WPRO, 2013). Break down of traditional family systems, out-migration, parenting issues, child abuse, suicidal thoughts, ideation and attempts among young people, obesity, alcohol and other substance use among the young, have become a major concern in the kingdom. However, psychosocial naming of people’s concerns, studies on psychosocial distress and any news about community based support systems are not available in the literature. 

Needed: full CRPD Compliance in mental health 

While professionals advocate for a ‘half way house’ for those transitioning from inpatient mental health care back to the community, the hospital unit has an open door policy whereby patients can drop in to seek respite and care on voluntary basis. However, coercion is practiced and numbers of involuntary commitment patients are recorded at 90%. The Mental Health Act also provides for compulsory community treatment orders but the objective cannot be met as regulatory system cannot match up. It is recognized that ‘institution based rehabilitation’ must be replaced by CBR. Funding for mental health and well being services is very low at only 1% of the Ministry of Health’s total expenditure, dramatically below WHO recommendations, mostly for medical treatments and improving infrastructure for practice of psychiatry. There are no ECT facilities in Tonga, closest being Fiji Islands, and so the moral questions faced by other commonwealth countries around the use and abuse of this controversial procedure, is not found here. 

Recommendations

The ‘advanced’ countries are today struggling with loss of communities, state control and over-institutionalization. In the global south, however, there are not so many ‘mental’ institutions, though thousands of unregulated social care institutions do exist. The ‘custodial’ mentality remains due to mental setbacks caused by colonialism in most post colonial countries in the Asia Pacific. Poor availability of community services, poor regulatory mechanisms, liberalising economies, have their impacts on communities and systems, with abuses happening in open communities. Mental health legislation, a product of colonialism, has been a recognized barrier worldwide, for the serious discrimination of persons with mental health problems and psychosocial disabilities. The Kingdom of Tonga, like many other lower/middle countries in the Asia Pacific, does not have medicolegal institutions, or special organizations built on principles of ‘custody’. This is a huge opportunity to build communities around Inclusion.

1. Inclusion in Development and Health care – Tonga has an impressive primary health-care system, good public health infrastructure, public health program features, comprehensive health care, urban development, civic administration, education, civic amenities, water, sanitation and waste disposal programs. Psychosocial perspective can be integrated into the already existing systems on development, including public health. Programs already in existence, offered in the kingdom, could be ‘upgraded’ to inclusion programs.

2. Preparing multiple stakeholders for Inclusion – service providers in Tonga work in the remotest parts of the Kingdom closer to families and communities. The church is found in all parts of the Tonga human habitats. They are all stakeholders who could be trained in inclusion of persons with mental health problems and psychosocial disabilities. The policies in development, as they are emerging, could already have a psychosocial well being and inclusion component. Then, at the local level, partnerships for inclusion and mental health can be forged through many development pathways.

3. Programming communities for Inclusion – family and kinship structures, community networks, culture are strong sentiments in the Kingdom, as evident from Langi-Maa conference. Basic modules of non formal care giving and support for persons with disabilities including mental health problems, can be offered for families and communities through the existing networks and systems. Local NGOs can be roped into the trainings. Training modules could be geared towards creation of support networks, family systems strengthening, community awareness and skills building, negotiation and arbitration techniques, peace building techniques, etc. 

4. Strengthening mental health systems towards Inclusion – Existing medically orientated mental health systems could be ‘upgraded’ towards CRPD compliance, with a more holistic view of the person and their social environment. Mental health law and policies can be reframed to be in alignment with the CRPD. Goals of psychosocial well being could be towards recovery and wellness promotion. The larger purpose of the mental health system would be to facilitate the inclusion of persons with psychosocial disabilities into communities. 

LANGI MA’A 2017 [4]

The visit to the Kingdom of Tonga was tied to TCI speaking engagements in the Symposium, “LANGI MA’A 2017: TONGA MENTAL HEALTH AND DISABILITIES SYMPOSIUM, organized at the TANOA INTERNATIONAL DATELINE HOTEL, NUKU’ALOFA, from October 9th to the 13th, 2017. 3 areas were identified as useful to the development of the sector in Tonga:

1. Brief overview of the CRPD

2. Inclusion of persons with Psychosocial disabilities

3. Programs development and available treatments/services compliant with the CRPD.

This was the very first mental health symposium in Tonga post independence and TCI Asia was proud to have participated [5].

TCI Asia visit to Tonga was supported by CBM-Australia in partnership with the Tonga mental health and disabilities Association [TMHDA, Nukualofa, Kingdom of Tonga]. TCI Asia is partner with the International Disability Alliance (IDA). IDA provides technical assistance and guidance to TCI Asia. 


References

[1] Kavita Nair, 2017, “Mental health systems in Tonga- A background paper” for TCI Asia Pacific. Bapu Trust, Pune. 

[2] https://blogs.worldbank.org/opendata/new-country-classifications-2016 

[3] Also, see http://www.loauuniversity.edu.to/index.php/en/taught-courses/183-mental-health-related-problem-in-tonga

[4] https://www.tmhdatonga.org/

[5] We thank CBM-A and Jillian Ferguson for great support to make our participation and our visit most meaningful

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Cross-Disability Perspective to the #WhatWENeed Campaign

Author: Shivani Gupta

Shivani Gupta

Cross-disability perspective to the WhatWeNeed campaign by Shivani Gupta

I am a person with a disability working as a cross-disability advocate and am also pursuing a PhD around support structures available to persons with high support needs living in rural communities in India. With very limited knowledge of psychosocial disabilities, I was fortunate to associate closely with TCI Asia Pacific [1] and understand the discrimination that persons with psychosocial disabilities face in their daily lives within their homes and communities. It was not so much the intense nature of discrimination that they faced that struck my interest but the strategies for inclusion that they advocated for. I see these as strategies that would benefit all persons with disabilities, especially those having high support needs. In this blog, I share my personal thoughts on those similarities.

Persons with psychosocial disabilities having the right to live and participate in one’s community is the key outcome we are aspiring for through different avenues such as the Global Mental Health Summit. However, the approach in which this is addressed is what makes a significant impact on the lives of persons with psychosocial disabilities. And according to me, the approach proposed and advocated for by TCI Asia Pacific would not only promote inclusion of persons with psychosocial disabilities in a manner that upholds their human rights but can be adopted also for a more sustained inclusion of persons with disabilities at large. 

The key is in transforming our communities in a way that they are more inclusive, and to fulfill this, combating institutionalization, creating more supportive communities, creating non-medical support systems in their communities, help in maintaining good mental and physical health.[2] These are also the demands of all other disability groups especially for persons who require a high level of support for daily living and participation who face similar levels of discrimination and may benefit from interventions demanded for by persons with psychological disabilities.

Institutional arrangements have been seen as an easy option to provide for most governments when addressing not only persons with psychological disabilities, but also persons who require high support in daily living and for persons without a family. De-institutionalisation and advocating against creating new institutions is big on the agenda for persons with psychological disabilities. But, de-institutionalisation is an issue even for persons with high support needs where again the government sees institutional care as an easy way out. They too would benefit from the government focusing on better support systems within their community. In addition, focusing on making the mainstream community services inclusive would not only reduce the amount of care required by individuals with disabilities but also increase their social capital and participation thus enabling them to lead a life they desire.[3] 

The social stigma that exists against persons with psychosocial disabilities and against persons requiring high support in daily living is comparable especially in low and middle-income countries. This stigma is fueled by their isolation and absence of meaningful social connections. For instance, it is common for families to chain persons with psychological disabilities outside the house or in a remote corner out of fear from them not allowing any form of participation to the person.[4] For persons with high support needs often the lack of adequate support available to them makes it impossible for them to become economically contributing and they remain dependent on the family all their life. This makes them to be seen as a burden and are left isolated within their homes again with no participation and limited interaction with the community.[5]

Families are the main support or care provider especially in LMIC where formal support systems are not as well developed. There are hardly any initiatives or programs that provide any kind of support to this invisible and unacknowledged workforce. Most often they provide care and support to the disabled family member without any formal know-how and without any respite making the entire experience extremely difficult with social, economic and health repercussions on them.[6] Such a situation is not only difficult for the family but also for the person with disabilities they are caring for who doesn’t receive the kind of care and support they require making them incapable of participation.

Further, research shows that persons with high support needs who require care and support on long-term bases for daily living and those providing them with this care and support, often suffer from depression and mental health issues which remain completely unaddressed. Alternative support practices used for persons with psychological disabilities such as the formation of peer support groups, art-based therapies can be as effective for persons living with long-term care needs and for their caregivers who are mostly family members. 

Therefore, to sum up, I would like to propose that the #WhatWeNeed campaign may be looked at not just in isolation in reframing the debate towards psychological disabilities but should be looked at as having a much larger scope of impact on the discussions and planning for lives of many other disability constituencies.


References

[1] TCI Asia Pacific website: http://tci-asia.org/aboutus.html

[2] General comment on article 19: https://www.ohchr.org/Documents/HRBodies/CRPD/CRPD.C.18.R.1-ENG.docx

[3] Sen, A.K. 1999. Development as Freedom. New York: Alfred A Knope. Inc. 

[4] Video by Human Rights Watch: https://www.hrw.org/news/2018/10/02/witness-shackled-years-now-free 
fbclid=IwAR0jIU25BPuV_Ck5Ci4__J8SdJgaBGoxWqLw31bVoTT_r_-6ed-AN_rdXo8

[5] Klasing, I. 2007. Disability and social exclusion in rural India. New Delhi: Rawat Publication. 

[6] A video by Carers Worldwide: https://www.youtube.com/watch?v=Rjgkicr-ZTY

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From ‘Mental Health’ to ‘Inclusion’ – Reframing the Momentum

Blog contributed by TCI Asia Pacific 


#WhatWENeed – Reframing the momentum: From ‘mental health’ to ‘inclusion’ [1]

TCI Asia Pacific advocates that the action field for persons with (psychosocial) disabilities is not the ‘mental health’ sector, but the Development sector. When we ask for ‘inclusion’, we have a more universal frame for our advocacy. Introducing these ideas in the Plenary meeting in Bali, we enumerated the steps required to “reframe” from the medical model to the social model of disability, and to ask different kinds of policy, program and movement questions. This “reframing” found strong articulation in the Bali Declaration, as a call for action – 

“That recognize, inclusion of persons with psychosocial disabilities involves a paradigm shift and reframing of policy environment from medical model to social model; mental disorder to psychosocial disability; public health to inclusive development; institutionalization to inclusion; treatment to support systems, evoking the guidance of CRPD and the SDGs to bridge such reframing;
That will place Inclusion of persons with psychosocial disabilities as the purpose, process and outcome of all social, legislative, policy, program, service actions, across all sectors, involving all actors including, but not limited to health care, and within all Development agendas, plans, programs, and partnerships for change”.

The following re-formulations have been crucial to TCI’s journey of understanding inclusion, and advocating for Article 19:
Firstly, TCI recognizes that a large part of the mental health law is a replica of the colonial period legal frameworks, passing through unaltered within the Commonwealth. In some states which were not colonized, there is no mental health law, even though, informally, social care institutions may exist in open communities[2]. Therefore, it is important for us to question the assumption that has been forced on us, originating from the WHO in the 80s and 90s, that having a mental health law is a sign of ‘modernisation’ of mental health care; that having such a law is in fact the precondition for providing mental health care. 

This is negated by the experiences of (1) countries which do not have a mental health law and yet have a good social infrastructure to support persons with psychosocial disabilities, with minimum or no support from governments (2) countries which do have a mental health law invariably and predictably have high rates of institutionalization, the terrors, traumas and abuses thereof, with the laws only getting more and more sophisticated and inaccessible, in terms of access to justice by the incarcerated persons. Large public bursaries mobilized for mental institutions and costly regulatory mechanisms has not ensured zero violence within the system. 

On the question of whether it is more empowering to call ourselves “users or survivors of psychiatry”, TCI Asia found that the terminology of “persons with disabilities” to be more closer to our lived experiences in the region. The Asian movement was born after the CRPD came in; in the wake of CRPD trainings received; and the CRPD created new identity pathways and allowed one to claim space through the identity of a ‘person with disabilities’. In contrast, the ‘user/ survivor identity’ pitches us solely against the medical system and negates the question of development.

However, this is not to negate the role of the right to health care, only to keep it within perspective, as one small part of human development. The social sector needs to shift from “voluntarism”, which often is about consenting to medication or institutionalisation, is disqualifying of all else, is conditional to agreeing anyway, which is experienced as a “Catch 22” situation. The service sector needs to shift to “choice” that includes a number of life choices, including each and every one of the rights provided for in the CRPD and amplified by the SDGs, especially employment and housing.

The Bali plenary raised some questions, which for TCI, is rhetorical, viz. 

1. Does institutionalization bring us inclusion?
2. Does medication/treatment bring us inclusion?
3. Does CBR bring us inclusion?
4. Does “Recovery” bring us inclusion?

How do we move from a narrow view of community, involving a restriction of participation, stigma and being confined to just “treatment”, to a more diverse, rich community life that we want for ourselves? Zero coercion must inform future laws and policies, and the CRPD requires preparing communities for inclusion. Therefore, a re-framing based on TCI Asia’s guiding advocacy principles would require: 

• An overhaul in the attitudes of service providers, whereby “institutionalization” is seen not just as a physical structure, but rather a 
mentality which allows service providers to be gatekeepers and determine the best interests of persons with psychosocial disabilities

• Providing multiple, accessible and affordable, formal and non-formal services of care as well as various services such as housing, 
education and employment enabling choice and the right to live independently.

• Besides a mental health system that fosters exclusion and segregation, stigma and exclusion starts at the level of communities in many 
countries. Therefore, it is important to creating enabling environments within communities and families, and allowing other development 
actors and services to come in as needed by the person.

Source: Alexander Cote, Bali Plenary, 2018

• Understanding that while the CRPD gives persons with psychosocial disabilities the compass, CRPD alone cannot ensure inclusion. 
• The CRPD is strengthened by the movement of persons with psychosocial disabilities. Not being contained within the disability movement but also reaching out to other social movements that cater to the different identities of persons with psychosocial disabilities. 


(2018) Source: Alexandre Cote, TCI AP Bali Plenary

References

[1] “Reframing the momentum”, at the “Classic Edition” Plenary of TCI Asia Pacific, Hotel Ayodhya, Bali, Indonesia, August 26th, 2018. Documentation by Shreshtha Das. 

[2](2016). Human Rights Watch. “Living in Hell. Abuses against people with psychosocial disabilities in Indonesia”. A Report. https://www.hrw.org/report/2016/03/20/living-hell/abuses-against-people-psychosocial-disabilities-indonesia

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New Report Compiles Global Evidence Base for Alternatives to Coercion by Piers Gooding

Author: Piers Gooding



A new report brings together evidence from around the world on preventing, reducing and ending coercion in mental health settings. The report, authored by Bernadette McSherry, Cath Roper, Flick Grey and myself, was commissioned by the Office of the High Commissioner for Human Rights to inform the work of the Special Rapporteur on the Rights of Persons with Disabilities, pursuant to the Human Rights Council.

The report seeks to compile leading practices from around the world on alternatives to coercion, as well as to identify gaps in the research.

Readers of this blog will know that the CRPD – the Convention on the Rights of Persons with Disabilities – challenges governments to improve access to voluntary supports for persons with psychosocial disabilities and to end coercive interventions. The United Nations Committee on the Rights of Persons with Disabilities has unequivocally directed governments to eliminate detention and forced treatment on healthcare grounds as it violates the CRPD.[1]

For decades prior to the CRPD user/survivor activists have sought to reduce, prevent and eliminate coercive practices. Coercion includes detention and non-consensual treatment, to the use of seclusion, physical force, the use of belts or straps to restrict movement, or pharmacological interventions to control behaviour.

We wanted to know whether coercive practices can be reduced, prevented and eliminated. Our review examined efforts in hospitals in high-income countries, to family homes in rural parts of low- and middle-income countries.

The review isn’t exhaustive, as it was confined to English-language resources. A larger review is needed to uncover empirical research and reports of promising practices, particularly in non-English-speaking regions. It is also likely that we missed important resources. The review could be updated periodically.

We included 169 studies and reports from many parts of the world. To our knowledge, no researchers have systematically analysed alternatives to coercion on this scale. Taken together, the material offers valuable insights into the state of alternatives to coercion.

The report is freely available and includes three handy tables at the end of the report. The first, summarises the formal, scholarly literature. The second, lists ‘grey literature’ – such as policy documents, materials released by disabled people’s organisations, and so on – as well as existing reviews of different practices, such as advance directives. The third appendix lists initiatives from around the world, including the work of TCI-Asia.

Given the emphasis in this blog, I will briefly summarise the findings concerning the Asia Pacific. There were very few English language resources on efforts to reduce and end coercion.

Studies from India, Indonesia and China appeared in the review but given the low number of studies, few generalisations can be made. There is a clear need t record good practices, including better understanding the concerns of persons with psychosocial disabilities and others concerned with coercion in mental health settings.

There were only two Indian studies: Shields and colleagues sought ‘client and carer’ views on psychiatric advance directives,[2] while Raveesh and colleagues examined the attitudes of psychiatrists and caregivers to the use of coercive practices. Participants in Raveesh’s study recommended ’empowering patients, improving hospital resources [and] staff training in verbal de-escalation techniques’.[3]They call for ‘standardized operating procedure[s] in the use of coercive measures’; this recommendation is not an alternative to coercion per se, though the authors argue that clear regulation would reduce coercion overall.[4] The counterargument is that such regulation may cement the use of coercion in day-to-day practice.

Three peer-reviewed studies were undertaken in Indonesia, all concerning the practice of ‘pasung’, that is, the shackling or restraint of persons with psychosocial disabilities in family homes and communities. Minas and Diatri, in their observational study on Samosir Island, argued that the ‘provision of basic community mental health services, where there were none before, enabled the majority of the people who had been restrained to receive psychiatric treatment and to be released from pasung’.[5] Puteh and colleagues similarly concluded that the ‘development of a community mental health system and the introduction of a health insurance system in Aceh (together with the national health insurance scheme for the poor) has enabled access to free hospital treatment for people

with severe mental disorders, including those who have been in pasung’.[6] They argue that it can inform ‘other low and middle-in- come countries where restraint and confinement of the mentally ill is receiving insufficient attention’.[7] Suryani and colleagues take a slightly different approach in applying a programme to address pasung; they sought to integrate more culturally-specific forms of support, which they describe as a ‘community-based, culturally sensitive … mental health model’ that assisted all 23 people subject to pasung to show ‘a remarkable recovery within 19 months of treatment’.[8]

In China, a study by Guan and colleagues was a largescale, national project, involving a nationwide two- stage follow-up study to measure the effectiveness and sustainability of the ‘unlocking and treatment’ intervention and its impact on the ‘well-being of patients’ families’.[9] Similar to the Indonesian studies, the unlocking process referred to an intervention to free people from deprivations of liberty in family homes or communal spaces (such as villages). 96% of participants were reportedly diagnosed with schizophrenia. Prior to unlocking, their total time locked ranged from two weeks to 28 years, with 32% having been locked multiple times. The authors reported that over 92% of participants remained free of restraints in 2012 and they argued that ‘[p]ractice-based evidence from our study suggests an important model for protecting the human rights of people with mental disorders and keeping them free of restraints […][via] accessible, community based mental health services with continuity of care’.[10] China’s ‘686’ Programme may be useful, therefore, for informing efforts in low-resource settings where community locking of persons with psychosocial disabilities is practiced. However, it does not appear that any of the research in the Asia Pacific – at least to our knowledge – included persons with psychosocial disabilities themselves on the research team, unlike some of the research in Western Europe and North America. More research may also be needed to determine whether the reduction of ‘informal’ coercion in countries like Indonesia and China, may have led to an increase in ‘formal’ coercion, through health services.

Caution is necessary on this front, given TCI-Asia has warned of a growth of psychiatric institutions in Asia, as well as laws which authorise non-consensual psychiatric interventions.[11] In a submission to the CRPD Committee, TCI-Asia warn that ‘even though mental health legislations do not exist in many [Asian] countries, and some have [only] recently adopted new coercive mental health laws, mental institutions are coming up quite fast, resulting in the escalation of barriers to inclusion’.[12] It may be useful for organisations representing persons with psychosocial disabilities to influence research that captures effective alternatives to coercion.

In the Pacific, there is evidence of efforts to address coercion in the mental health context.[13] The Pacific Disability Forum Sustainable Development Goals/CRPD Monitoring Report 2018, for example, notes that ‘[s]ome resources are still used to fund services in education and mental health that are not aimed at inclusion and participation and should be reallocated towards inclusive programs’. However, the report also highlights positive measures, such as the Kingdom of Tonga’s first National Disability Inclusive Health Plan 2016-2020, which is designed to strengthen access to health care, rehabilitation and mental health services for people with disabilities in Tonga.[14] However, the extent to which such formal services are genuinely rights-based, recovery-oriented and trauma-informed – and which avoid coercion – is unclear.

More research is needed to identify positive actions being taken in Pacific Island countries and New Zealand (and indeed, Australia) to reduce, prevent and end coercive practices in the mental health context, including among indigenous communities.

On this latter point, it is noteworthy that the Family Group Conference approach, which has become prominent in Dutch efforts to reduce coercive psychiatric interventions, was developed from Maori approaches to family law disputes.  In New Zealand, a handful of crisis respite services are Māori-led, or incorporate Māori cultural practices. Awhi Rito, for example, provides crisis respite for mothers and their babies.

Outside of the Asia Pacific, the research challenged certain assumptions in typical mental health services, such as the notion that psychiatric wards need to be locked. This assumption is based on a belief that locked doors prevent people from absconding, attempting suicide or dying by suicide.

However, German researchers examined around 350,000 admissions to 21 hospitals over a 15-year period & found “insufficient evidence that treatment on locked wards can effectively prevent these outcomes”. In fact, their research suggested the opposite. Open wards were associated with a decreased probability of suicide attempts, absconding with return, and absconding without return, though open wards did not appear to affect rates of death by suicide.

In Germany, according to Zinkler, some hospitals (mostly in small towns and rural areas) have almost completely abolished compulsory psychiatric treatment, with no corresponding increase in other types of coercion or violent behaviour.

These are just a few examples from the report. Although the literature was diverse and relates to a whole range of practices which makes it hard to standardise solutions, there is good evidence to support a range of initiatives in community organising, policy, law and practice.

Reassuringly, it seemed that whenever governments, service providers or community advocates made concerted efforts to reduce, prevent and end coercive practices, they largely succeeded.

Perhaps another important lessons for advocates, activists and allies of people with psychosocial disabilities in the Asia Pacific is that good practices are likely to be happening already, but that it can be important to record these practices, including documenting any successes (or failures).

There have not been any jurisdictions that have implemented all the positive measures to reduce coercive practices in family homes, social and housing services, hospitals and community services. Perhaps a future study could what would happen if multiple initiatives, in family homes, crisis respite houses, hospitals and elsewhere, were introduced together with the explicit of reducing and eliminating coercion from responses to psychosocial disability.


Dr. Piers Gooding is a socio-legal researcher at the Melbourne Social Equity Institute, at the University of Melbourne.

He is on Twitter at @P_Gooding



References

[1] Committee on the Rights of Persons with Disabilities, General Comment No 1: Article 12: Equal Recognition Before the Law, 11th sess, UN Doc CRPD/C/GC/1 (19 May 2014) and CRPD Committee, Guidelines on Article 14 of the Convention on the Rights of Persons with Disabilities: The Right to Liberty and Security of Persons with Disabilities, 14th sess (September 2015)

[2] Shields et al, above n 57.

[3] Raveesh et al, above n 220, s221.

[4] Ibid.

[5] Minas and Diatri, above n 8.

[6] Ibrahim Puteh, M Marthoenis and Harry Minas, ‘Aceh Free Pasung: Releas­ing the Mentally III from Physical Restraint’ (2011) 5 International Journal of Mental Health Systems 10, 10.

[7] Ibid.

[8] Luh Ketut Suryani, Cokorda Bagus Jaya Lesmana and Niko Tiliopoulos, ‘Treating the Untreated: Applying a Community-Based, Culturally Sensitive Psychiatric Intervention to Confined and Physically Restrained Mentally III Individuals in Bali, Indonesia’ (2011) 261(Suppl 2) European Archives of Psychiatry and Clinical Neurosciences 140, s143.

[9] Guan et al, above n 56.

[10] Ibid.

[11] Transforming Communities for Inclusion -Asia, Submission to the UNCRPD Monitoring Committee, Day of Generai Discussion, Article 19 ; see also .

[12] Ibid.

[13] See, eg, Pacific Disability Forum, Pacific Disability Forum SDG-CRPD Mon­itoring Report 2018, 15 ; Bhargavi Davar, ‘From ‘User Survivor’ to ‘Person with Psychosocial Disability’: Why We Are ‘TCI Asia” (blog) 

[14] Pacific Disability Forum, above n 407.SHARE

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#WhatWENeed Taiwan

#WhatWENeed in Taiwan

1. De-colonization of the mental health sector

Taiwan was the first independent, Asian, democratic republic. However, it has had a complex history of colonialism, invasions and occupations by different nationalities (Dutch, Spanish, Chinese, Japanese, etc.). “Taiwan’s culture and cultural legacy has been largely shaped by the processes of imperialism and colonization as the structural and psychological effects of successive colonial projects have been integral to developing Taiwan’s self-image and the evolution of both official and unofficial Taiwanese culture”(1). History goes that the British refused a proposal to occupy Taiwan. So, the country escaped having pre-human rights lunacy laws. 

2. Full CRPD compliance and inclusion within disability frameworks

Taiwan government sought to voluntarily engage with the CRPD monitoring process. They appointed an Independent Review Committee comprising of CRPD Committee members and other independent experts to review CRPD compliance. Refer to the report here.

People with Disabilities Rights Protection Act was made in 2007, where people with psychosocial disabilities are indeed included. In Taiwan, 1,125,113 people are registered as having disabilities. Of these, 10% have been diagnosed as having mental disabilities. However, the estimation is from a medical psychiatric perspective, not from the perspective of disabilities. From 2014 there is a law to implement the CRPD – Act to Implement the Convention on the Rights of Persons with Disabilities(身心障礙者權利公約施行法), the goal of which is to comply with CRPD. In 2014, it is officially the domestic law in Taiwan.

A new Mental Health Act was introduced only in 1990. Writers on the history of mental health legislation in Taiwan are clear that this law was not made to protect the human rights of persons with psychosocial disabilities. As typically found in the region these days, it was not lawyers which made the law, but private psychiatrists: “The government commissioned a private mental institution to develop a draft of the Mental Health Act, with the purpose of protecting the public and reducing the dangers from psychiatric patients” (2). The MHAct leans heavily towards protectionism, guardianship and involuntary commitment. 

The IRC recommended that “the State expedite the review of its terminology and approach in laws, policies and practices to enable the paradigm shift that recognizes persons with disabilities as full holders of all human rights and fundamental freedoms, and provide a timeline for completing such review”.

3. Discard the medical model in favour of the social model of disability

Both these legislations lack focus on community resources, and put too much emphasis on Disability Cards, institutions and the medical model. The number of psychiatrist to persons is 1:17000, which is higher than other Asian countries. Persons who have a psychosocial disability find it hard to get a disability card from the government resources. The disability assessment system uses discriminatory medical language, such as “mildly disabled”, “moderately disabled” and “severely disabled” in assessing persons with disabilities. In 2017, among those with chronic mental illness, 54.8% were moderately disabled, 28.5 % were mildly disabled, 15.9% were severely disabled, and 1.6% were extremely disabled. The most common cause of disability was chronic illness (71.1%). According to the “Report on the Living Conditions and Needs of Persons with Disabilities in 2016: Questionnaire Survey of Major Family Caregivers”, the incidence of “chronic mental disorders” was 37% from 18 to 30 years old, and the median age of occurrence of disorders was 28 years old. The proportion of “unmarried” people with “chronic mental disorders” was 47%, the proportion of “no children raising children” was 53.47%. The average number of years of family members caring for those with “mental illness” was 17.13 years, while the average number of years of care for intellectual disability was 23.49. These figures are quite high, and there is concern about how they were arrived at. The government has schemes for independent living, but excludes persons with mental disabilities. 

4. Abolish Guardianship

There is no separate guardianship law. However, the Civil Code of Taiwan provides the order of commencement of guardianship and the order of commencement of assistance. An adult’s guardian shall be selected by a court ex officio. The said order would not be implemented until the adult loses his/her capability of communication. Under the circumstance, the definition of a ward’s “independence” cannot be met perfectly. The government has noted the gap. Therefore, in January 2015, the Ministry of Justice invited the social welfare groups, including Parents’ Association for Persons with Intellectual Disabilities, Taiwan, scholars and experts to discuss the “Voluntary Custody System”, which allows the person with disability to determine his/her guardian, so that the a person’s dignity and interest may be respected. Given this, Ministry of Justice will complete the draft of amendments to the laws for establishment of the voluntary custody system, and submit the same to Executive Yuan for examination as soon as possible. The Ministry of Justice will also proceed to record and research the motion about the capability of a person subject to the order of commencement of guardianship separately.

The guardianship refers to the circumstances in which the commencement of guardianship and assistance by the court. For the number of persons who have been commenced of guardianship and assistance by the courts (juvenile and family) from 2014 to 2016. As for the number of persons with intellectual and mental disorders that were not in guardianship, since it involves the national statistics of disability population, there is no reliable data available. The number of persons who have been commenced of guardianship and assistance by the courts from 2014 to 2016.

(Unit:People)

2014 had 3609 commencement of guardianship cases and 260 commencement of assistance cases. 2015 had 3799 commencement of guardianship cases and 263 commencement of assistance. 2016 had 4081 commencement of guardianship cases and 266 commencement of assistance. There has been a steady rise in the guardianships for persons with psychosocial disabilities. 

As can be seen, there is a big gap in legal compliance in guardianship and CRPD compliance. The IRC has recommended that “the State amend all relevant laws, policies, and procedures and that a system of supported decision-making be put into place that is compliant with the UN CRPD Committee’s General Comment No. 1, including the provision of adequate resourcing for such a new system”.

5. Traditional healing

Taiwan has diverse cultures of Chinese, indigenous/aboriginal populations and cultural practices. Mahayana Buddhism has been practiced in Taiwan since centuries, however, the Chinese prohibited practices of Buddhism, which resurfaced only in 1978. Traditional Chinese medicine (such as: Acupuncture) is available widely in Taiwan but “healing psychological problems” is not often its main target. Chinese medicine is based on energy systems – chi and the yin and yang. Doctors working Chinese medicine consider adjusting the body’s energy as the primary goal. But it can help healing. Taichi, qigong, herbal medicine, yoga are also methods of healing. There are also temples that hold rituals for people having experience of a mental crisis. Traditional medicine is covered under the public health insurance scheme.

6. Community support systems

The IRC in 2017 have remarked repeatedly on the derogatory language commonly used in Taiwan, stigmatising persons with disabilities in general, and persons with psychosocial disabilities, who have internalized the identity as “mental patients”. Families are the main form of support in long term care, and it is internalized by the persons with psychosocial disabilities as “burden of care”. The government does not support them in any way. While policy is presently forced to think about “de-institutionalization”, there is no provision for de-institutionalizing, by setting up community support systems. The mental health system is not adequately prepared for this, by integrating resources from other sectors notably labour, social services, general health care. The quality of care for community mainstreaming and inclusion needs to be enhanced, and the health care payment and evaluation provisions need to be revised to avoid the re-institutionalization.

There is a proposal to create smaller institutions (50 beds or less), but this is still based on the penal model of involuntary commitment. Stigma is high, making “mental patients” resistant and afraid to seek medical treatment. As provided in the People with Disabilities Rights Protection Act, the valid term of a disability certificate is 5 years. The persons with disabilities in a community will take the government’s assessment at least once per 5 years, and the government will organize a professional team to confirm their needs and provide supportive care services for individuals and families. In addition, all levels of governments shall conduct need assessment on the living situation, health care, special education, employment and training, transportation and welfare and shall publish and announce the results of such research at least once per 5 years. In the performance evaluation indicators of social welfare, each local government shall make implementation plans and prepare and execute the budget in accordance with the assessment result. 

The government has a budget of more than 20 million per year for persons with disability to live in the community, and only those who are identified as severely disabled can apply for the maximum number of hours – 60 hours per month – equivalent to only 2 hours a day.However, because the indicator for disability includes ADL and IADL, most people with mental disability are not eligible.

The core spirit of the CRPD is that the obstacles are not caused by the physical and mental defects of the physically and mentally disabled, but by the external environment, stereotypes, discriminatory attitudes, or interactions that will hinder the physical, mental, and physical participation of the disabled. There is still a long way to go for community-based care for “mental patients” in Taiwan. On the one hand, it is necessary to invest in the establishment of a sufficiently mobile community care team. On the one hand, it is necessary to create a friendly and acceptable community environment, with laws and resources in place, and cross-team cooperation such as health, social, labor and police so that mental patients can be more effective. The medical care and self-reliance can reduce the burden on family members and reduce the problem of social security. Mental patients are not terrible, terrible is the public misunderstanding and stigma. Only when everyone works together can the community-based care of mental patients succeed.

There are unmet needs of many community mental patients, including physical and mental symptoms, as well as the need for money, social welfare, and social relationships. In addition, it is very important to note that self-stigma has become an obstacle to the recovery of community mental patients. This is similar to the poll conducted by the Taiwan Psychiatric Association last year. 37% of “mental patients” are afraid to tell others that they have mental illness, and 41% of “mental patients” feel that others cannot accept that they are using psychiatry. In addition to the self-stigma of community “mental patients”, the problem of social stigma of mental illness is also very serious. A 2017 survey found that 46% of people with “mental illness” were rejected or discriminated against during their duties and many believed that people with “mental illness” were at risk. Recovered people are still not accepted by the community or by the employers. The linkage needed between disability assessment and entitlements is not made so there is no social protection. There are a few clubhouses and very few peer support systems. Most resources are clinical/medical based. If one does not have professional licenses such as social worker or therapist, etc, she or he doesn’t have many resources (e.g. budget) to build up a community based support system, for example, peer support systems. Persons with psychosocial disabilities are finding it very hard to build up a self-run, independent support system.

The IRC has strongly recommended “That the State amend all relevant laws and policies, including the Mental Health Act, so that involuntary detention on the basis of disability is prohibited, and that a system of procedural safeguards, including immediate access to legal assistance, be put into place, including ensuring the free and informed consent of the individual; and (b)That the State uphold the freedom to make one’s own choices as a principle in article 3 (a) of the CRPD and recommends an absolute ban on the deprivation of liberty on the basis of actual or perceived impairment”.

7. Full CRPD Compliance

The current legislations do not meet the standards set by the CRPD. The IRC has commented on full participation of persons with disabilities and DPOs in developing laws and policies, and specific recommendations on all CRPD provisions. Towards assisting persons with disabilities in inclusion and adapting to communities, the government provides in Articles 26, Article 30, Article 32, Article 37, Article 47 of the Regulations of Personal Care Services for persons with disabilities, various community-based services – including life reconstruction, residence in communities, community-based day-care, community drop in facilities for operation at daytime, etc. With regard to the content of these services, besides providing daily living skill training, inter-personal relationships and social skill training, the government also plans to carry out campaigns to promote participation in life and adaption to communities simultaneously to assist persons with disabilities in actively participating in community activities, to enhance their interaction with families and communities and to enhance community engagement.

All local governments have been actively planning and establishing community-based day-care, residence-in-communities and family care service centers. As of the second quarter of 2017, there were 159 community facilities for operation at daytime, 114 community-based day-care service centers, 94 residence-in-communities service centers, and 129 family care service centers, which served 5,326 persons. Moreover, to assist persons with disabilities in living in the communities independently and choosing the living places that are suitable to them and participate in society equally under the preconditions that they can make their own decisions, choices and be self-reliant and that opportunities are equal for them, the government promotes supportive services for independent living of persons with disabilities and had served 14,402 persons by the second quarter of 2017.

In order to achieve the goal of “caring psychiatric patients in the community” and enhance the quality of psychiatric rehabilitation services, as well as to assist the psychiatric patients with better condition in returning to their community, in 2014, DPOs requested the department of public health in every municipality or county (city) to limit the total quantity of bed (50 beds or less) on the application of new establishment or service expansion proposed by mental institutions. As of the end of 2016, up to 84.24% of such institutions have adjusted their service scale to 50 beds or less successfully. This practice will be taken into consideration when amending the relevant regulations for such institutions in the future, to gradually reduce the patients’ number from staying at large rehabilitation centers or institutions. Rather, we aim to provide the persons with a wide range of community service choices to facilitate them adjusting and living within the community. However care is seen as within a medical model still and independent living is yet to become a reality for persons living with mental illness. CRPD compliance and social model is needed.

© Prepared for TCI Asia Pacific (2018) by TAMI and TGQRAA, Taiwan, for the Bali Plenary meeting, August, 2018. 

About the organizations:

TAMI – The Alliance for the Mentally Ill of R.O.C., Taiwan(TAMI) is a non-government, nonprofit, grassroots, self-help organization of consumers, families, and friends of people with mental illnesses. Founded in 1997, TAMI currently has 29 group members from local organizations of 20 counties in Taiwan with more than 4,000 members who have made great efforts to provide services to people with psychosocial disabilities, working on the national and local levels in support and advocacy of mental health. TAMI has emphasized on support to persons with serious mental disorders and their families; advocacy for nondiscriminatory and equitable policies and treatments for brain disorders; also education to eliminate the pervasive stigma surrounding severe mental illness. TAMI works in co operation with professionals to change mentality; remove social and other barriers; addressing poverty, and enabling social support systems through employment; managing medicines, using psychotherapies, and social skilling; mainstreaming within communities; improving self determination of persons with psychosocial disabilities especially through providing transitional employment from asylums and social development; peer support trainings; personal life storying; building hope. 

TGQRAA: We are building local peer support systems, amending 〈Mental Health Act〉, helping other organizations building peer support discourses.


References

1. Wikipedia, https://en.wikipedia.org/wiki/Culture_of_Taiwan, accessed on 26-10-2018


2. Wei-Tse Hsu, M.D., M.S.1 , Hui-Ching Wu, Ph.D.2 , Frank Huang-Chih Chou, M.D., M.S., Ph.D.1 A History of Mental Health Laws in Taiwan * Taiwanese Journal of Psychiatry (Taipei) Vol. 31 No. 3 2017 195-203.

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Global Mental Health: An Old System Wearing New Clothes Series – Mad in America Podcast with China Mills

In this podcast first published in Mad in AmericaDr. China Mills talks about the Global Mental Health Ministerial Summit 2018, the development and trajectory of her relationship with the Movement for Global Mental Health and the concern she has regarding the import of foreign medical systems to the Global South to address distress as well as the framing of disabilities as a burden. 

Listen here as she talks about the importance of DPOs and groups like TCI Asia Pacific in looking for ways to address distress from within the existing systems rather than import foreign systems of care. China also aptly addresses how TCI Asia Pacific and the Bapu Trust practice a different kind of advocacy where the advocacy is aimed at doing something different from preconceived notions of mental health care and not resisting these notions. 

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#WhatWENeed Japan

Excerpts from TCI Asia Pacific Action in Japan


Osaka  – 22-23 November 2017

#WhatWENeed is peer support as community development, not “mental health care”

Excerpts from “TCI Asia Action in Japan”[1] [2]


One of the objectives of TCI AP’s Japan exchange were:

  • To bring a small group of peer support practitioners from TCI Asia membership and to have focused discussions on the importance of peer support in Asia.
  • It was also hoped that there will be a lively exchange with the Japanese government, and other key policy stakeholders, on the importance of peer support in Japan.  Being a high income economy, TCI Asia Pacific also learnt a lot about the highly institutionalized setting of mental health care.

Peer support movement in the way practised in the West has been there for at least 2 decades, as far as we know, in Asia (e.g. Hong Kong, Japan). Some leading user/survivor figures at the time, for e.g. Mary O’Hagan, supported the trainings and mentorship of DPOs in the countries[3]

Open Dialogue was also popular. Such community development methods were growing at a fast pace, with lead taken by organizations and by persons with psychosocial disabilities, particularly the Japan Group of Mentally Disabled People (JGMDP, Osaka).

In Osaka[4], we learnt that peer support for ‘Recovery’ (within the mental health system) and peer support for ‘Inclusion’ (as a part of community development) were two different pathways of actions.  The former is done within the medical paradigm;  the latter is within the disability / social inclusion paradigm.   

The Japan Health Department presented their study on the experiences of peer workers within their highly institutionalized mental health system. A high percentage of mental institutions in Japan are private and they have the typical warehousing design of colonial hospitals with a very high conduct of involuntary admissions. Hospital stay is very high in Japan, 275 days per person on an average. The Government is concerned, but hasn’t known how to work in communities. So they provided for special cadres of “peer supporters” who work in such highly institutionalized medical settings. Around 2000 peer supporters exist within the system.

While the stated objective of Peer Support in this framework was “living independently in communities” the program did not have the desired effect. Community care is not making good progress from the view of the health department – readmission, revolving door phenomena, all continue to exist in Japan. The Ministry of Health did a survey on peer support utilization from 64 local municipalities. Participants had high experience as peer supporters with a 10.6 years average.

The definition of ‘peer supporter’ is not very uniform or even clear. Peer supporter activities – awareness and psycho-education, escort services for activities outside of hospital, running support groups, home visits assistance very much underpaid, with between 2.5 – 30 hours a week. Peer staff support medical consultations especially on medicine compliance. They provide decision making support within the medical system. They expected that their co workers will understand their disability, respect them as human beings, be recognized for their special skills, appreciate their professionalism and enjoy equal treatment. They also expected that their peer support work will be recognized. However, peer support work was not recognized and was undervalued within the system. 

The way peer support is being used in countries like Japan, Hong Kong raises the question of whether the expected outcome strengthening mental health treatment, or is it to strengthen the supports in the community. Peer supporters- are they to work more like personal assistants to the person with the disability, or more like a psychiatric nurse?

Within high income Asian countries, the role of the peer supporters are largely within the medical, often institution based, system. In Thailand, peer supporters can be exhorted to share confidential information by psychiatrists.  There was sharing of experiences about widespread ‘co-optation’ when peer supporters work within the system. There was a strong opinion that a peer supporter should give news about side effects of medication to the person with disability, whether they want to hear it or not.

Low and middle income country experience of peer support is more from the location of Disability Inclusive Development (Indonesia, Pakistan, India, Sri Lanka), within communities, informal support and going beyond medical role, towards access to a variety of support systems for enabling living in communities. There is more DPO led actions in these countries. In India, however, the situation is fast changing, with psychiatrists leading peer support efforts. It raises the question whether it is peer support at all.
In nearly all countries, using arts and performances, turning to nature / agriculture and running, football and sporting were included as part of self care and recovery; and as community development activities. Some countries enjoyed funding support from social welfare for some of these activities. In Japan, the use of rhythm and drumming to explore possibilities of dialogic communication was useful, and it was considered as the ‘Asian’ way by JNGMDP.

The question of ‘who pays’ for peer support services has a variety of responses in Asia.  Peer supporters staff are paid in places, but not peer supporters.  Its a part time or full job for some people. Others are working closer with community families, etc. where it may also be voluntary, stipend based, informal work, etc.

Peer support is a felt training need for all over the region. Different small and big groups of persons with psychosocial disabilities are practising it. However, locally adapted, culturally appropriate peer support models, in compliance with the CRPD need to be developed, for sustaining the movement and expanding it through the region.  There is a crying need for a regional training program, and having peer partnerships throughout Asia.
Japan National Group of Mentally Disabled Group (JNGMDG) is a Japan based organisation led by users survivors of psychiatry fighting against Japanese Ministry of Health and Welfare, mental hospitals, psychiatrists and discrimination against persons with psychosocial disabilities.  To contact them reach out to: scp_kirihara@yahoo.co.jp 


References

[1]  JNGMDP & TCI Asia (2017).  “TCI Asia Action in Japan: Peer Support”. Report of a Country Mission Visit to Japan, Ibaraki, Osaka, November  22-23,  2017.  Japan National Group of Mentally Disabled People (JNGMDP) in collaboration with TCI Asia,  Research Center of Ars Vivendi of Ritsumeikan University, and NPO Corporation Aru.  Report by TCI Asia, 2017.

[2]  Thanks to, the team of JNGMDP, for visioning, planning, mobilizing resources, leadership, cordial and generous hospitality; Core team of JNGMDP for the gracious partnership; Ito, Kasumi, JNGMDP for tireless admin, translation, organizing and local support work;  Shivani Gupta, for overall co-ordination and backend support.

[3] Anthony C. Stratford, Matt Halpin, Keely Phillips, Frances Skerritt, Anne Beales, Vincent Cheng, Magdel Hammond, Mary O’Hagan, Catherine Loreto, Kim Tiengtom, Benon Kobe, Steve Harrington, Dan Fisher & Larry Davidson (2017): “The growth of peer support: an international charter”. Journal of Mental Health.  To link to this article: http://dx.doi.org/10.1080/09638237.2017.1340593

[4]  TCI members and international participants who travelled to the meeting were, Indonesia (3); SriLanka (1);  Pakistan (1);  South Korea (1);  Thailand (2); Taiwan (3);  HongKong (2); China (2); India (1);  Japan (9 key members from different provinces).   In all, 66 people participated in the peer exchange. Importantly, there was provincial representation from Japan in the meetings. JNGMDP organized simultaneous translation services for the 23rd meeting. For the meeting on the 23rd, around 89 persons participated from all allied sectors. The Workshop attracted around 50 participants.


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Response to the Lancet Commission on global mental health and sustainable development by Akriti Mehta

Author: Akriti Mehta

Akriti Mehta

More than ten years after the publication of a series of articles published in the Lancet[1]that heralded in the age of global mental health, a report of The Lancet Commission on global mental health and sustainable development[2] was released at the Global Ministerial Mental Health Summit[3] in London. It seeks to reframe mental health and place global mental health within the broader framework of the Sustainable Development Goals[4]suggesting future paths.

It is commendable that the leaders of the Movement for Global Mental Health, many of whom have authored this report, acknowledge the importance of social determinants of mental health. The continued opposition to long-term institutionalisation is welcome. Furthermore, the focus on a life course approach is promising. Most importantly, the report stresses the need to move beyond just ‘treatment gaps’ and to recognise the importance of Sustainable Development Goals.

It is important to bear in mind that the marriage between global mental health and sustainable development that this Commission proposes will lead to an increase in the already considerable financial resources allotted to the activities of global mental health. Where and how these resources are used will impact the lives of people for decades to come, especially in the global south. The stakes are high, and this makes it pertinent to critically engage with the Commission report, its agenda, and proposed activities. Detailed responses to the report will certainly follow in the next few months, and hopefully this will allow us all to carefully examine the impact of this Commission. As a start, this blog post will focus on three broad points—the framing of mental health, human rights, and the position of persons with psychosocial disabilities in the report.

How it frames mental health?

The field of global mental health and this Commission are based on the assumptions that experiences that differ from what is deemed ‘normal’ fall within the remit of health and medical frameworks. It follows that the causes of those differences are then located within the individual and ‘treated’ as such. Despite acknowledging the importance of a persons’ environment and life situation and mentions of the concept of ‘social suffering’, the slight shifts in language and concepts do not match up with this depoliticised and individualised understanding of mental health. This lends itself to a report that is peppered with contradictions and limitations which are sometimes acknowledged but often remain unaddressed.

Time and time again, in this report, text about the importance of social factors in relation to distress is followed by the medicalisation of that distress and the claim that it should be ‘treated’ through evidence-based health interventions. When discussing the impact of marginalisations on mental health, the arguments in the report do not move beyond the individual and fail to acknowledge the socio-political structures that perpetuate these oppressions. This is apparent not only from the content of the report but also the authors, majority of whom remain embedded in medical sciences, public health, and psychiatry.

At the very least, the authors should acknowledge that their understanding of mental health is just that – their ­understanding rooted in psy- disciplines with little input from persons from other highly relevant fields such as sociologists, gender studies academics, political theorists, legal scholars, development study researchers, mad scholars, post-colonial academics, critical race theorists, etc.

How it frames human rights?

‘Mental health is a fundamental human right’ – the report repeats this refrain. This right to mental health is conflated with the right to mental healthcare. What the Movement for Global Mental Health continues to omit is any examination on what counts as ‘care’. While the report speaks of the CRPD at several places, it refuses to meaningfully engage with it and does not open or allow debate on how a system can reconcile situations where two fundamental rights seem to be at odds. There is an unsaid or unwritten suffix to its insistence that ‘mental health is a fundamental human right’:  It is ‘and that this right trumps all other human rights’. Global mental health benevolently seeks to provide this one particular right (the right to mental healthcare) at the expense of all other human rights.

As an example of its narrow framing of the CRPD, it says – “There is an urgent need for greater dialogue between advocates of the CRPD and people working on the ground in LMIC, to articulate systems of review based on evidence-based principles of competency” (p20). The implications of this sentence are of grave concern: First, it implies that the two groups of people (those who support CRPD and those who are working on the ground) are separate and mutually exclusive. While this is true of some CRPD advocates, its staunchest advocates (and the organisations they lead) are more aware of the realities of working in local contexts than most global mental health researchers[5]. Second, it goes on to propose the solution which is ‘systems of review’, examples of which are all based on a system of guardianship. It does not consider solutions, many of which are supported by evidence, which may be outside of what global mental health consider appropriate[6].

Where it places users/survivors/persons with psychosocial disabilities?

The report points to what it calls the ‘fourth shift’, one “exemplified by the expressionnothing about us without us” (p5)It makes much of the fact that “prominent individuals have disclosed their personal accounts of living with mental disorders” (p7) but prominent individuals have done this for decades just not in the format familiar to global mental health advocates. It recognises the importance of users and survivors, people with psychosocial disabilities and those with lived experience, but limits their engagement to individual acts. There is no mention of collective action, peer support, activism, advocacy, knowledge production, interventions around inclusive communities and sustainable livelihood that is the focus of several user-led organisations and DPOs in the global south. Without acknowledging this long-standing and continuing work, it frames the narrative around service users and their importance as if it were a novel approach.

Perhaps what we need is a fifth shift wherein the Movement for Global Mental Health engages with, listens to, and takes cue from the persons with psychosocial disabilities in the global south who challenge the mainstream, who are deemed less compliant, painted as ‘trouble-makers’. It is time to pay heed to what we say, for it is for our supposed benefit that global mental health claims to work.

Conclusion

This Commission was convened to reframe the conceptualisation of mental health. While it does reframe (or rephrase) old thinking about mental health, it fails to re-think old frameworks under which global mental health operates. To restate what has been said elsewhere in relation to this Commission [7], critique is not the same as dismissal and it is my sincere hope that the critical responses to it will be listened to, taken as seriously as we do this report, and that we are able to forge a future course that is more inclusive than this Lancet Commission.

Positioning of the author: I have experienced mental health services in India for over a decade. This experience of being categorised, ‘treated’, and how my small acts of defiance were received by professional, professors, and society as well as the work of others taught me to critically re-examine what ‘maRdness’ means. I am currently living in London working on a research project (www.eurikha.org) exploring knowledge production by users, survivors, and persons with psychosocial disability.  I studied global mental health, learned to speak its languages, became familiar with the arguments for and against it, and write this blog from a somewhat uncomfortable position of someone who is broadly critical of the field but also feels that we must engage with it, in order to change it.

References


[1]https://www.thelancet.com/series/global-mental-health?code=lancet-site

[2]https://www.thelancet.com/commissions/global-mental-health

[3] There was widespread critique of the Summit in the form of campaigns (What We Need campaign – https://tciasiapacific.blogspot.com/) and open letters (https://www.nsun.org.uk/news/global-ministerial-mental-health-summit-open-letter)  

[4]https://sustainabledevelopment.un.org/sdgs

[5] Bapu Trust, India (http://www.baputrust.com/); USPKenya, Kenya (http://www.uspkenya.org/);Locos por nuestros Derechos, Chile (https://www.facebook.com/Locospornuestrosderechos/); Fundamental Colombia; Psychosocial Disability Inclusive Philippines; TCI Asia Pacific (https://tci-asia.org/)

[6]https://socialequity.unimelb.edu.au/__data/assets/pdf_file/0012/2898525/Alternatives-to-Coercion-Literature-Review-Melbourne-Social-Equity-Institute.pdfhttp://www.uspkenya.org/wp-content/uploads/2018/01/Role-of-Peer-Support-in-Exercising-Legal-Capacity.pdf

[7]https://madinasia.org/2018/10/the-global-ministerial-mental-health-summit-and-the-lancet-commission-some-uncomfortable-reflections/