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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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Reframing “#WhatWENeed” through the Bali Declaration


On the 29th of August, 2018, the 5th “Classic Edition” Plenary of the TCI Asia Pacific was held in Bali, Indonesia. At the Plenary, persons with psychosocial disabilities and their cross disability supporters from 21 countries of the Asia Pacific region came together to adopt the Bali Declaration. 

The Bali Declaration is an amalgamation of the core of TCI Asia Pacific’s philosophy, aspirations and work. It comprehensively lists out the systematic violations of rights of persons with psychosocial disabilities by the medical model, looks towards an entire paradigm shift towards a social and development oriented model framed and rooted in the CRPD as opposed to a mental health and biomedical model, and confirms the failure of overarching legal, political, economic and social structures in ensuring equal participation and in promoting further exclusion of persons with psychosocial disabilities. The Declaration welcomes efforts and shifts towards a more inclusive society with persons with psychosocial disabilities at the centre of all discussions, participation and engagements and aspires for persons with psychosocial disabilities to claim their meaningful place in society through inclusive environments.

The Bali Declaration not only calls for action the inclusion of persons with psychosocial disabilities through “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;” but recognises that “inclusive implementation of Sustainable Development Goals and the full realisation of human rights mutually reinforce each other.”

Please find below a list of the individuals and organisations that have endorsed the Bali Declaration.

Full text of the Bali Declaration here


Individual Endorsements

1. Meenakshi Balasubramanian, India
2. Shreshtha Das, India
3. Lavanya Seshasayee, India
4. Joanna Marbaniang, India
5. Emmy Charissa, Singapore 
6. Chan Sze-Wei, Singapore
7. Timothy Ng, Singapore
8. Robyn Yzelman, Singapore
9. Reetaza Chatterjee, Singapore
10. Aziz Reza, Bangladesh
11. Tien-Hsing Hao, Taiwan
12. Chintha Janaki Munasinghe, Sri Lanka
13. Matrika Devkota, Nepal
14. Cheung Hing Yee, Hong Kong
15. Zhuang Chao Frank, China
16. Tanjie, China
17. Yang Chouniu Linus, China
18. Anita Binti Abu Bakar, Malaysia
19. Pinky Kamchat, Thailand
20. Elizabth Harrington, UK
21. Angeline Maharaj, Fiji
22. Rakesh Chand, Fiji
23. Alvis Chand, Fiji
24. Undisclosed Name

Organisation Endorsements

25. Ha Giang Centre for Community Assistance, Vietnam
26. The Red Door, India
27. AccessAbility, India
28. Seher, Bapu Trust, India
29. Global Women’s Recovery Movement, India
30. CBR Network (South Asia)
31. USP Kenya, Kenya
32. Songket Alliance, Brunei
33. Harmony with Ultimate, Bangladesh
34. Mental Health Advocacy Association (MHAA), Bangladesh
35. Bangladesh Therapeutic Theatre Institute (BTTI), Bangladesh
36. Theatre Therapy Centre of the Disabled (TTCD), Bangladesh
37. Institute of Human Resource Development and Management (IHRDM), Bangladesh
38. Alliance of Urban DPOs in Chittagong (AUDC), Bangladesh
39. Unite Theatre for Social Action (UTSA), Bangladesh
40. Taiwan Gender Queer Rights Advocacy Alliance(TGQRAA)
41. Nidahas Chinthana Sansadaya (Southern Sri Lanka Consumer Action Forum), Sri Lanka
42. Consumer Action Network Mental Health (CANMH) Lanka, Sri Lanka
43. Koshish, Nepal
44. Disabilities CV, Hong Kong
45. Changsha Thanksgiving Mental Health Advocacy Centre, China
46. Japan National Group of Mentally Disabled People, Japan
47. Mental Illness Awareness and Support Association (MIASA), Malaysia
48. Pacific Disability Forum, Fiji
49. Maldives Association of Physical Disables (MAPD), Maldives
50. Psycho-Social Disability Alliance, Pakistan

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Link between Diet and Mental Health – Role of a Nutritious Diet on Mental Well-Being

Originally published on Mad in America

The link between diet and health is a well established one. Previous research has shown that there is a well established connection between a diet high on pro-inflammatory foods and depression. The benefits of having a rich, well-balanced diet on our well being and as an additional and alternative form of recovery is widely practiced at the Bapu Trust and is one of the core elements of the Seher program’s 8 point framework intervention. 

Recently on Mad in America in an article titled “Study Explores Connections Between Diet and ‘Serious Mental Illnesses'”, Bernalyn Ruiz wrote about a recent letter to the editor published in World Psychiatry where data taken from the UN Biobank study highlighted the link between poor diet and severe mental illnesses. The suggestion made by the authors of the letter to the editor was that “further consideration should be given to increasing consumption of nutrient‐dense foods that are known to reduce systemic inflammation.”

Read the full article here

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Making Sense of Trauma – Moving Away from the Disease Model and Embracing Cultural Responses to Stress

Reblog from Mad in America



Noel Hunter recently wrote on Mad in America about how the ‘trauma-informed trend often falls short’. In this article, she argues that while there are more and more mental health professionals who are becoming ‘trauma-informed’ and though the trend is moving in that direction, many of them have not moved beyond the disease model of trauma and are yet to embrace the holistic understanding of trauma and recovery. 

She writes about the problem of ‘invisible trauma’ – trauma which does not check off the traditional, DSM led understanding of how, why and what trauma should look like and be caused by. She argues that trauma is highly subjective and “what is considered to be life-threatening to a two-year-old is very different than to a 22-year-old”. She argues compellingly that being ‘trauma-informed’ for most mental health professionals is limited to that trauma that is easily “identifiable and measurable” otherwise it “apparently doesn’t matter”.

She goes on to write about the export of Western and Global North (American) models to understand mental health and stress, often leading to far larger and graver systemic problems. She uses the example of the import of a foreign model in Africa by the missionaries which led to the eradication of age old African customs and the implementation of apartheid. She argues that “It is time we started embracing diversity, difference, complexity, and humility. Mental health professionals would do well to consider that we are a tiny speck among the history of healers, believers, story-tellers, philosophers, charlatans, snake oil salesman, lovers, judges, and ideologists. No checklist or questionnaire will ever change that.”

Read the full article here.

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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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Mad in Asia Interview Series on ‘Making Inclusion a Reality’

An interview series first published on Mad in Asia Pacific looks at the work of three activists working in the Asia Pacific region. Emmy Charissa from Singapore, Silvia Antonia De Costa Soares from Timor Leste and Frank from China speak to Jhilmil Breckenridge from Mad in Asia Pacific. 

In the first part of this two-part series, the interviews are conducted at the TCI Asia Pacific Bali Plenary 2018 where the three activists talk about the efforts they have made in their countries to advocate for the CRPD, the traditional and alternative healing methods they practice and what changes they would like to see in their countries and the Asia Pacific region as a whole. Watch this interview series to know more about the specific regional activism going on in the Asia Pacific.

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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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Reframing mental health conversations from ‘What’s wrong with you?’ to ‘What’s happened to you?’

Originally published on Mad in America


Zenobia Morrill recently wrote on Mad in America on Trauma-Informed care with survivors perspectives. Based on a new editorial in the Journal of Mental Health by Dr. Angela Sweeney in collaboration with Dr. Danny Taggart, she writes on trauma informed approaches and how survivors perspectives come into context especially with re-traumatization through mental health services. Sweeney and Taggart write ““By recreating abuse through ‘power over’ relationships, services can revictimise service users, preventing recovery,” they write. “This highlights the need for psychiatric services to do the opposite of trauma: from fear to safety, from control to empowerment, and from abuse of power to accountability and transparency.”

Morrill also addresses the “orienting shift” that comes with reframing “What’s wrong with you?” to “What’s happened to you?”.

Read the full article here