INTAR India - day 3 and further

Monday 28 November 2016, was the third day of the conference of INTAR: International Network Toward Alternatives and Recovery, organized by Bapu Trust, http://www.baputrust.com/index.php/news-networks/intar-india-2016

At 9 AM the conference started. Today’s theme was: Peers, Supports, Systems and Movement responses. And since it was the final day of the 3-day INTAR-conference, reflecting on future steps was also a cross cutting theme.

The first plenary session was titled: Key messaging on community inclusion from human rights perspective.

First Alex Cote (IDA) briefly introduced the basic structure of the United Nations (UN) framework, and then introduced the speakers of the first session, who will present parts of the UN structures, directly relevant for alternatives for recovery.

Samuel Kabue, newly elected member of the UN CRPD Committee, spoke about the UN Convention on the Rights of Persons with Disabilities (UN CRPD), and explained the basic principles, and the meaning of various articles, and how they can be used to push for change. He emphasized the major importance of legal capacity (art 12) and inclusion in the community (art 19), as two main pillars for universal human rights.

Diane Kingston, also member of the UN CRPD Committee, highlighted the established jurisprudence of the UN CRPD Committee, which consists of Concluding Observations on the State Party reviews, General Comments and statements for further guidance. She elaborated on a number of Concluding Observations from different parts of the world and emphasized that the same standards apply for everyone globally. On article 12, she explained: Denial of legal capacity means legal death. What is needed is support instead of substitute decision making. Yet, so far there are hardly any States in the world who understand CRPD art. 12 correctly (only Costa Rica so far).

Alberto Vasquez, assistant of the UN Special Rapporteur on the Rights of Persons with Disabilities, Mrs. Catalina Devandas, briefly explained how organizations can relate with the UN CRPD Committee’s processes. Organizations can submit written information on the themes that are on the agenda of the UN CRPD Committee. Examples are shadow reports for the state review processes, input for discussion on Draft General Comments, and individual complaints under the Optional Protocol. For more information see: http://www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPDIndex.aspx
(Also the International Disability Alliance (IDA) and the World Network of Users and Survivors of Psychiatry (WNUSP) are long-time engaged with the UN CRPD processes, and offer a platform and support for organizations to engage at this global level of policy making).

Michelle Funk of the Quality Rights program of the World Health Organization, spoke about the shift away from the medical model, to the human rights model. This shift is a legal obligation under the UN CRPD. Many parts of the UN framework have picked up on this, and an increasing amount of attention is given to mental health globally, such as for example in the Sustainable Development Goals (SDGs), several UN-resolutions, thematic reports of OHCHR, and under various other treaty bodies (CAT-Committee, SPT, Human Rights Committee, Working Group on Arbitrary Detention). The developments are not going at the same pace everywhere, and there is still a variety of perspectives, but the general concern is the same, and it creates a momentum. There is a huge need for CRPD-compliant alternatives, to ensure that this momentum results in the right global investments to realize access to quality services for mental health support globally.

To me, this wasn’t really new information, since I am working on these themes a lot via WNUSP. Nevertheless it was still interesting to reflect on these human rights frameworks with the information and perspectives of past 2 days in mind.

During the discussion time, the issue of law reforms came up: Many states still use the old paradigm and the outdated guidance of decades ago, and they are creating new mental health laws that still allow for more hospitalization and more forced treatments, which is contrary to the UN CRPD. It is a challenge to educate all stakeholders, and to get everyone on board to rethink the system, and to compose the new legal frameworks.

Gabor Gombos (famous user/survivor activist, and former UN CRPD Committee member) reflected on the session, and shared a perspective of hope. 20 years ago, the mental health field only gave space to one single perspective, which was the medical model. Now, the discourse of the UN CRPD leads to a polyphony of perspectives, which may be confusing at some points, yet it allows for diversity, discussion, growth and change.

During the following coffee break, I prepared the room for my workshop on Family Group Conferencing, which started at 11.45 with about 15 people. In the workshop, I explained how the model of Family Group Conferencing (FGC) can be used to identify desirable solutions to overcome a psychosocial crisis situation, and to avoid practices of forced treatments. Family Group Conferencing is a voluntary consultation process with persons of your choice, to address a key question in your life, which can be on anything (support needs, barriers, imminent situations, future plans). Together with your own circle, you identify what is needed, and steps how to realize this. This results in a personal plan. Family Group Conferencing originated in New Zealand, where the current law on children, youth and families states that “persons should be supported to make their own plan first, before any government intervention can be started”. FGC is already used in many places around the world, although mainly in child care services, as a way to organize supported decision making, community based support, and to prevent government interventions. I concluded that the same FGC-model can be useful for identifying support options regarding mental health issues and psychosocial crisis situations.
There was enough time to answer all the questions in the room, which were mainly seeking clarification on details. I received some very positive comments and compliments (including by WHO representatives, and by several persons from Asian communities). I was really happy with that. Then the workshop had a very natural ending, perfectly on time.

I felt great, and also exhausted. I was happy to have a lunch break and some time to reflect on my workshop myself, before the afternoon sessions started. I felt a bit numbed actually. Apparently my workshop had costed me a lot of energy. Although I was longing for a longer break, I went back inside to join the afternoon sessions.

The plenary summary and round up session was rescheduled, since some people had to leave before the end of the conference. The early Round up session was facilitated by Bhargavi Davar and Liam MacGabhann, who reflected on the many inspiring presentations and dialogues that took place over the past 3 days, and challenged us to think about how to translate these into future steps.
The following afternoon plenary panel was about: Transforming for the future: Where to from here?

Bob Whitaker (journalist/author of Anatomy of an Epidemic) shared a very interesting analysis on the marketing strategies of the medical model. He explained that the psychiatric profession used intensive PR-campaigns, branding strategies and “education campaigns” to promote the DSM (psychiatric diagnostic manual), which portrays psychosocial problems as controllable chemical imbalances which are to be fixed by psycho-pharmaceuticals. Yet there is no evidence for these theories of a “broken brain”. This false science is nevertheless leading to an epidemic, with an increasing number of persons diagnosed with “mental illness”, and a growing number of the population on psychiatric drugs (including more and more children who grow up while on drugs). To counter this misconceptualization on mental health, it is very important to build a new global narrative on mental health, and to address what is really happening, and what is really needed. The well-known website Mad in America (http://www.madinamerica.com ) aims to contribute to the development of a new global narrative on mental health, by collecting and sharing critical and innovative views, experiences, studies and other information, in order to stimulate awareness and to offer guidance and education to rethink psychiatry.

Olga Runciman (nurse, survivor and chair of Danish Hearing Voices network) spoke about the peer-led network of voice hearers, who reject psychiatric labelling, and who regard voice hearing as a part of human diversity. In fact, behavior and experiences have always been labelled differently across different cultures and communities (such as UFO-experiences, visions and voice-hearing). The Hearing Voices network enables people to give their own meaning to their experiences.
She illustrated this with an impressive story of a voice hearer, code name John, whose voices were at first pathologized under the medical model, resulting in horrible psychiatric treatments aimed at banning the voices, which didn’t help at all (of course). For a number of years, John was institutionalized. Then he came in touch with the Hearing Voices network. For the first time, his personal story was heard, and by talking about his experiences, John eventually identified a link between certain deep traumas and the secret messages he receives by the voices. At present, John still hears these voices, but he is no longer afraid of them, so the voices are not a problem. To John the voices are merely a spiritual experience of uniqueness of being “chosen” to live an extraordinary, interesting life with these voices.
Olga Runciman also elaborated a bit on the term “psychiatric survivor”, since not everyone survives psychiatry. In Denmark, a campaign to remember those who died in psychiatry led to public discussion on the staggering numbers of deaths in psychiatry. A recent study into the causes of these deaths revealed amongst others the deadly risks of administering multiple psychiatric drugs at the same time. The campaigns are still ongoing.

As a final speaker, Amita Dhanda (professor) presented a new “mental health menu card”. The symbolic menu card lists a number of concepts of the understanding of mental health, ranging from repairing the individual pathology, to creating acceptance of diversity, and from nurturing interconnectedness and spirituality, to addressing social-economic determinants and structures for wellbeing. The new menu card enables persons to pick and choose any approach according to their own preferences. So the next step is to ensure that people can actually order what they want from this menu. This is a challenge and requires new organization. Yet, instead of creating a segregation between “abled” and “disabled” such as the medical model approach does by organizing support based on diagnosis and impairment models, it would be better to take a universal approach by using the model of vulnerability, which applies to everyone throughout life, since everyone has support needs throughout life, they only vary from person to person, and from situation to situation. By recognizing vulnerability as a universal feature of human beings, and by organizing support for everyone, nobody is left out. Another important point is recognizing each person’s legal capacity, and respecting their will and preferences, which is paramount to humanness as well as human rights. Denial of legal capacity, and practices of forced treatments are absolutely unacceptable and contrary to human rights. The new menu cards on mental health support should reflect the fundamental principles of diversity, self-determination and choice.

An interesting discussion followed on policy making structures, and on how to influence the construction of a new narrative and new “menu cards”. Since apparently, there are already many evidence-based, non-medical good practices, yet these are still sidelined from the mainstream, and considered as additional or non-scientific alternatives, instead of understanding that these are necessary alternatives to comply with human rights standards. And instead of the mental health sector embracing innovation, there is a backlash, and the medical model seems to intensify their efforts to keep their treatment-monopoly (which in itself supports the analysis of Bob Whitaker in his award-winning book: Anatomy of an epidemic ). On the other hand, the UN CRPD gives us a very powerful tool to advocate for change. Basically, it is the same fight as many others in the human rights field.

Also interesting remarks were made on accepting uncertainties in life, and admitting that the old paradigm of “creating safety and certainty” was an illusion, and that psychiatry is in fact creating a rapidly growing burden on the communities, by growing costs and growing suffering, while also the communities themselves have grown more intolerant to human variety, since the medical model concepts are disconnected from our lived realities and promoted segregation. So basically, we have been living in a world based on lies and pseudo-safety. And our society obviously calls for change.

It was a very interesting and inspiring session again. We are all part of an important geopolitical challenge, to dismantle the old system, and to spread a new philosophy in line with the UN CRPD. This is exciting, yet also an enormous task (which is something all participants undoubtedly know).

After the coffee break, the final round of workshops started. I joined the one on: Investing in community alternatives and the way ahead, led by Samantha Schubert (CBM-A). It was an active workshop to discuss future pathways for realizing community based support, yet I noticed that I was actually just too tired to really concentrate and participate actively, so I mainly just listened. I also felt that it was appropriate to be a listener in this session, and to really hear what persons coming from the global south have to say about the needs and pathways, and then think about how I could support this. It was interesting.

I had become more and more philosophical over the past days, and was thinking a lot about North-South differences, and how similar words can carry different meanings. For example, in Europe, the meaning of the word “wellness” is much more shallow than in India, where the same word carries a much deeper meaning. And exactly this “change of perspective” was the most striking thing of the entire INTAR conference. Many words were no longer disconnected from lived realities, but the words were actually used meaningfully. And I mean double meaningfully, as a cumulated effect of having innovative participants present, as well as influenced by cultural aspects of genuine language. Throughout the entire conference, there was a focus on real life and the wellbeing of humanity, and how to support this best. It was truly “out of the medical box”, and it was extremely liberating to be free to move out of the western frameworks. It exceeded any Euro-American imagination, and this made this conference a very unique experience for me.

The closure of conference was facilitated by Bhargavi Davar and Liam MacGabhann, who briefly reflected on the past 3 days, and thanked everyone for their participation at this milestone event. Then there was time for a group picture, and another drumming circle as a final closure. It was a very nice and relaxed ending of a very special event, again celebrating unity despite many different backgrounds. The INTAR-conference had been a great experience in so many ways.

After the end of the INTAR conference, many participants were leaving and said goodbye. I stayed, since I was participating in a round-table conference the next day. In the evening, I had a nice pizza dinner with some other participants, and afterwards, I had a nice time in the hotel lobby bar again. And again I slept very well in the comfortable bed in the hotel. Happily looking back at my successful workshop today, and the beautiful experience of 3 days of INTAR conference. I considered myself very lucky to be part of this inspiring group.

*

The next day, I was present in the Convention Centre at 9 AM again, to participate in the additional Round table conference on CRPD article 19 (living independently and being included in the community). It was a very interactive day, with group work and input from each of us.

During the morning session, we worked in small groups to imagine “the community of the future” , of which every group made a nice drawing. This was really fun to do. All groups were very creative with nice symbolism in their drawings. After presenting our future views, we were asked to identify commonalities in all drawings. The next step was to think in hindsight on which changes in today’s world would be needed to realize this envisioned future scenario, and eventually we were asked to think of concrete steps that would enable this envisioned discourse. This was a very interesting exercise, leading to a rich diversity of ideas, ranging from media awareness and campaigns, to addressing social injustice and crosscutting bigger issues in the community, to building wider alliances, promoting diverse narratives and wellness models, and proper research, and having good leadership and political dedication for human rights, and much more. By the end of the session, we had enough creative ideas to virtually solve all the suffering in the world.

After the lunch, we had another session of group work, and I volunteered to lead the workshop on: Movement building. It was a very small group of only 3 people. We identified a lot of well-known challenges for movement building (poverty, marginalization, feelings of powerlessness and so on), but we had only about 20 minutes, and we lacked time to really come up with concrete solutions, which is no real surprise, since this is a very big issue. We did identify a number of steps that can be taken to support the voice of persons pushing for alternatives, such as networking more intensively across all regions, offering a platform to share information, empowerment of local groups who practice or advocate for alternatives, and access to resources.

Afterwards, all groups shared their ideas, which was again a rich variety. This was followed by a final round for remarks and input. Everyone was still actively contributing ideas, although basically everyone was tired after a series of conference days. It was a very dedicated group of inspiring people.

Around 4 PM the round-table conference ended.
It had been an interesting day, and I was happy that I had had the opportunity to meet some very interesting people more closely. It was very nice to reflect together on the INTAR-conference, as well as on the future needs of the movement.

After the conference, most participants were leaving, and said goodbye. It was quite a farewell event in the hotel lobby.
Only a few participants stayed for the evening or the night, depending on the flight times, and with a small group, I enjoyed a nice spicy dinner, with an ongoing conversation about geopolitical mental health advocacy. I totally loved that. The nice time lasted all evening, and then I went to bed around midnight. It felt different, since I didn’t have to work the next day.

*

I was actually the last participant to leave from Lavasa. My departure was set on 7 PM on Wednesday 30 November 2016, which meant I had nearly a full day of free time, which I used to stroll around in the area. In the afternoon I took a refreshing dip in the luxurious private swimming pool near the hotel, but I was actually bored with it quite soon, so I went back to the waterfront to enjoy the presence of people. After an early dinner, I went back to the hotel, and waited for my taxi to arrive, while having very interesting conversations with the nice hotel staff again.

While the hotel itself is like a little paradise, the hotel staff share a room with 4 others in an apartment. During most of the year they live in Lavasa, and are separated from their families. They can only visit home a few times a year. I felt really sorry for this situation of family-separation. To me, this seemed a typical issue to address as a social determinant for the wellbeing of the population.
Eventually I left Lavasa filled with deep thoughts and inspiring ideas.

I had a long flight over night. In itself it was a good trip. Yet, I also had some tough moments on my way home, since I am very sensitive when persons with rubber gloves ask me for “body checks”, which is mainly due to my personal experiences with forced body cavity searches in psychiatry. On the other hand, during the trip, many persons were very nice and complimented me, and made me smile again. So, it was a quite extreme experience to both ends, and in multitude. By now, I can see this as a metaphor of an intense journey to reach a mountain top view. And the view was stunning.
:)

*
When I came home, I was exhausted, and for several days, I just mainly took time to sleep and recover, until I felt fit again. Then I started to digest the many experiences I had had over the past 6 days in India, and to explore the more philosophical dimensions of this experience (which are many).

At INTAR, the fundamental “out of the medical box” perspective was strongly present, which made it feel like “a new world”, and sometimes “far away from home” as well. It was a very useful exploration. I feel really enriched, inspired and empowered, and I am greatly thankful for the wise perspectives that were shared with me. I am thankful for this great gift of learning, and I wish that this light will shine for everyone. Namaste <3