A standing ovation for the users at WMHC

Today, Thursday 20 October 2011, the consumers/users/survivors got a standing ovation at the World Congress of the World Federation for Mental Health. It was very special to be part of that.

This morning I was a little bit late at the conference (a little over 9.00 instead of 8.30), mainly because my wake-up call was a little late. Unfortunately I missed the video-presentation of Heart Sounds Uganda, by Joseph Atukunda, a user who made some very sharp remarks during all days of the conference. So then I chose to go to the session on Psychosocial rehabilitation, which was moderately interesting for me, but very relevant for the African Continent.

When I walked in, Veditha Singh was talking about the Protective Workshop: more than a business enterprise but a life skills training programme. It was about a workplace for users, a safe place for those who can’t get along in the big world outside, due to stigma or when the world is just overloading them. It is a place to learn social skills, and where users feel useful and valued again, surrounded by peers. And by being employed, the community and family also looks at them in a different view, they are no longer a burden. There is a social worker for support, and the focus is not on work, but on personal growth and capacities. For me this isn’t a new formula, but to the African community it can be a very good way to give meaning to the life of users, and to reduce stigma.

The next speakers were Julie Millard and Janet Meagher, who spoke about the Back On Track Health (BOTH) project: addressing physical health care needs and promoting active participation in self care.
They acknowledge that many people with mental health problems also have physical needs, and those are often neglected (for example teeth, eyes, feet, metabolism, or chronic diseases). Also for example the use of medication can lead to various medical issues, or just a need to be careful, and also often the self care or health of people with mental problems is not optimal. Physical problems can worsen mental problems, and mental problems can have a negative effect on physical health, so it can even become a negative cycle. A holistic approach, for the full human being, is necessary. So with the consumer movement they have made a health checklist, which is easy to understand because of the use of easy and direct language. They are not taking over the life of the user, because that won’t work. A person has to become motivated and committed in taking care of themselves, that is the only way to get a lasting improvement in the self care. When it’s just obliged or asked to do this or that, the user may stop doing it afterwards, and fall back into old patterns. So they just try to make them aware of the connection between mental and physical health, and together with the user they identify points of attention. By doing this, the user gets more understanding of their own body and the specific risks for him or her. This enables prevention and adequate care, which surely benefits the health of the user. Every user that participates gets a little green book with the checklist and by filling in the questionnaire this becomes a personal guidebook. The questionnaires are gender specific, and the BOTH-service has a network of resources for the possible needs, so they can help the user find his way to get proper care. For example they have contacts with a medical practitioner and even located a free dental service.

Then came a presentation from the Netherlands, by Jolanda Kroes and Siemen van der Meulen (Hanze University Groningen) about Empowerment and participation in a civil society for people with a psychiatric – or psychosocial disability. At some point I almost walked out, because it really gave the western feeling of mental health care, where all professions are like islands, not communicating, and taking over from the users, as neurotic problemsolvers on their own domain, not looking at a greater image. I was glad to find out that this was exactly the point they were trying to address. They were talking about the social support act, which aims to give care back to the community, and they said they needed to step down in delivering care: the social workers are no longer the first one to help persons with problems. A good civil society can provide good support. The social support act (wet WMO) requests that. But the first attempts to change the care system failed, because they were just so used in doing their own thing in an isolated way, that this lead to some uncontrolled chaos in the community. Then they found out that the carers needed to learn to communicate and cooperate with each other. The isolated professional was called I-shaped, and they wanted to move to T-shaped professionals, who also work together, interdisciplinary, linking professions, as in TTT (horizontally connected). This means that also the professionals inside institutions need to learn more about the services and life opportunities outside the institution, such as school, social activities and structures. They should be able to think out of the box, and not just focus on their own profession. The first attempt failed, because this was only decided by the management, and the people from the community themselves were not involved, which led to unexpected situations. Then they found out that they should do it all together, and empower the users to live a life in the community, and give support where needed. They found out that they should ask the users what they needed or wanted to live a happy life in the community. Everyone has wishes for a social role in the community, like working in a kindergarden, or taking guitarlessons, or finish their education. By asking about those wishes and giving support to those wishes, they found out that is was possible that users have a satisfying and peaceful life in the community. They said that for social workers it was hard not to take over control, because they are so used to that.
So this is the knowledge of my country. I am somehow ashamed that this is what they call care in the Netherlands, and they consider themselves smart, like they have really invented something, namely that they have to communicate both with the user as amongst themselves. I really hope Africa doesn’t have to get so cold first, before they start providing warm care to persons with mental problems. European psychiatry is really a bad export product in my opinion.

Then, during the tea/coffee break I was looking at the users-art exposition that was displayed in the hall. My eyes fell on a book: A life interrupted – the story of Misjke by Stephanie Redelinghuys, and while I was looking through that book, a lady said: if you have any questions feel free to ask. This appeared to be Stephanie Redelinghuys, the mother of Misjke. The book was full of art made by Sara Michele Redelinghuys van Dyk, a remarkable artist suffering from bipolar mood disorder, and who died in the prime of her life (22-09-1963 - 29-10-2002). I had a nice talk with her mother, and she was really struck when I told her about consulting and including family and friends, for support in the making of self owned treatment plans (my poster presentation). She was really moved by this, and she gave me a book as a gift, in the name of her daughter. She even signed it for me. I was very moved by this very special gift. The book felt alive to me, like a sweet treasure that has to be nurtured. I held it against my chest, in the memory of her daughter Michele. The artworks inside show the wide range of emotions Michele had during her life, and the book emphasizes that many great artists have deeper struggles at their background. This book is a very powerful way to reduce the stigma attached to mental problems, and addresses the positive contribution one can make while having such psychosocial struggles. It is very special to me.

I missed half of the keynote session on Migration and acculturation, mental health and wellbeing, where Kamaldeep Bhui was speaking about another research project about whether cultural aspects or belonging to a minority contribute to mental health problems or radicalization or not. It was questionable, and also a lot of aspects were not included in the research. I didn’t really pay attention to this lecture.

Then came Janet Amegatcher, outgoing chair of PANUSP (PANPEP), who had studied law. Het lecture was called: the consumers’ lecture - Stigma and discrimination: advocacy for a worldview change. First she told about the change in the name of PANUSP (that abbreviation is still in use) from Pan African Network of Users and Survivors of Psychiatry (PANUSP) into Pan African Network of People with Psychosocial Disabilities (PANPEP), which is more in line with the UNCRPD and more appropriate for the African situation, where psychiatry is not available for the mass of the population.
Janet mentioned that people with disabilities are challenged double. They face a stigma from the public (by all), as well as from themselves. This is caused by discrimination against them and by stereotypes, which on its turn originate from prejudice that all patients are violent, childish, have a weak character or are irresponsible, by beliefs that mental health problems are a curse from the god(s) or a burden, and emotional anger. This leads to discrimination, such as withholding help, social avoidance, coercive treatments and segregated institutions, Persons with mental problems are often treated in a hostile way, and are kept out of the community because of fear. Therefore people with mental problems can end up in a prison system. The self stigmatization comes from a low self esteem, righteous anger and relative indifference to society. The stigma is more disabling than the disease on itself. The media often portrays users as bad, like homicidial maniacs. Persons with mental health problems are generally at the bottom of the society, and are generally excluded from the development agenda. They are stuck in the cycle of poverty and mental ill health, with no access to health care or social support, and no access to schools, work, finances, legal systems and so on. That is discrimination. Persons with mental problems have therefore less hope, which is making the problems worse.
Some strategies for changing these attitudes are: protesting to minimize negative attitudes, education to inform the public about mental health and mental health problems, and contact with users to meet them and see with own eyes that users are people. Users need to be visible.
After her speech, Janet read the Cape Town Declaration, which Robinah Alambuya , the new chair of the Pan African movement, read to us on at the Global Summit at 17 October 2011 (you can find the Cape Town Declaration on that date on my blog).

After Janet’s speech there was a request from Jeffrey Geller, who was in the audience. For the journal of the World Psychiatric Association he was looking for user-stories (max 1600 words). He would like to have an African story, with a central theme of own choice. This story will be carefully reviewed by the university, in accordance of the user involved of course, and that might even take a year, and then ultimately it can be published in the journal. The story will then be useful to publish and hand out at many occasions. If anyone is interested, please send your story to: Jeffrey.geller@umassmed.edu


During lunchtime we had a user-meeting in the service-users-lounge, a quiet place where users could relax and get away from the chaos of the conference. It was a nice place to be, with big sofas and chairs. We, the users present at the WFMHC drafted a declaration for the closing ceremony.

Then after lunchtime, there was a lecture by Tsuyoshi Akiyama about the East Japan disaster: 11-3-2011 (earthquake, tsunami and radiation leak at Fukushima). Of course this had its impact on the community, but the biggest part of the community is doing fine, although some carers were somehow overloaded. Due to this disastrous event carers had to let go of the segregation in their jobs, but instead use all their skills, do whatever they can and work together in an optimal way. Now they want to somehow sustain that new optimal multidisciplinary approach, which sounds like a good idea.


Then during the afternoon tea/coffee break, I again talked to some very nice people, who were willing to contact me to persons who work inside the Valkenberg psychiatric hospital to see if I could get a look inside. The conference-tour tomorrow to Valkenberg was already booked full, to my utmost regrets, so yesterday I had registered for another tour: the one to Lentegeur, another state-run psychiatric hospital, a very new one. But I am also invited by a psychiatrist to come to Lentegeur next week, so I still wanted to see if I could find a way to go to Valkenberg. And now I have met 2 ladies who work there as a staff and patient trainer (in the mornings) and I am invited to call them on Monday morning to make an appointment. They said it would be no problem to come inside, and they actually liked talking to me, and were interested in my feedback (one of the things I regularly do in the Netherlands is consultation at psychiatric hospitals to improve practices). I am very happy that I might have opened the door to Valkenberg now. (the story goes that it is almost impossible to go in there). So this is also making me proud. I’m on my way doing the impossible, and I hope that I can help them, and improve the quality of life for the users. So next week I might have 2 visits at 2 different psychiatric hospitals.

I kept on meeting interesting people, so I didn’t make it to go to the last workshop session. One lady was very impressed by my poster (my model to have Open Mind-support meetings) and she asked if I was willing to start such a project in South Africa, and if they could invite me to do so. Of course I said yes.
I didn’t bring my large poster today, only the small copies to give away. And a lot of people said “I have heard you talking and I like what you said”. I got so many compliments today, really amazing.

At 17.30 the closing ceremony started. We were asked to give a standing ovation to the organizer, which was actually a little bit weird (normally that happens spontaneously). There were some ceremonial remarks, thanking all organizers, sponsors and participants. Then Ronald Shaw, a service user on the board of the South African Federation for Mental Health, was asked to give a closing remark from the service user perspective, and he did an excellent job. His speech was only half way and everyone applauded already. He closed with a quote from Nelson Mandela, the father of South Africa saying:
“Our challenge is to make sure that no one has lesser rights or is tormented for being born different”. It gave me goosebumps and tears in my eyes, and I’m sure I wasn’t the only one.

Then it was time for the user declaration which we had prepared as users all together, about 20 persons, most of them from South Africa. We all went on stage, and 3 of us read the statement out loud. It led again to goosebumps and a lump in the throat of many, and some eyes got wet. It was really amazing. Afterwards everyone applauded and stood up, this was a spontaneous standing ovation. It was o so special to be part of that.


This is the declaration from Consumers/Users/Survivors in attendance at the Cape Town, South Africa World Federation for Mental Health Congress, 21st of October, 2011:

We, the consumers/users/survivors present:
Acknowledge – the history of Consumer/User/Survivor participation in the Congresses of the World Federation for Mental health since the 1980s.
Acknowledge – the struggle to enable the Consumer/User/Survivor voice to be heard and respected at the World Federation for Mental Health even today.
Acknowledge – the efforts of the South African organizing committee to welcome Consumers/Users/Survivors by provision of a separate and respectful quiet environment – and having a good range of Consumer/User/Survivor speakers in workshops and papers.

We Consumers/Users/Survivors present:
- Respectfully suggest that – future congresses aim to enable Consumers/Users/Survivors to participate at all levels of congress programme and planning processes.
- Respectfully suggest that – the Board of WFMH actively seek and secure ongoing funding to enable active networked, and consistent Consumer/User/Survivor participation on the WFMH Board. Additionally a minimum of two (2) Consumers/Users/Survivors shall be seated on the Board at all times.
Many potential and effective Consumer/User/Survivor Board members are unable to nominate to participate on the international scene because of financial limitations NOT because of personal competency to fill this role. This constitutes a form of alienation and discrimination due to the personal financial situation most Consumers/Users/Survivors find themselves in… In reality this may well limit family participation as well.
- Respectfully suggest that- WFMH, as the only world-wide multi-sectoral membership organization show leadership in facilitating access for Consumers/Users/Survivors to your Board, your assembly, congresses, your activities and your thinking – to model preferred practices, i.e. recovery, to world communities.
- Respectfully suggest that – the WFMH remember that it is a membership organization in which members expect the right to express opinions, suggestions, and directions at the General Assembly.
- Respectfully suggest that – organizations and members of the World Federation of Mental Health commit to incorporating human rights of people living with mental health problems – as outlined in the United Nations Convention on the Rights of People with Disability – are respected, protected and incorporated into your practices and advocacy. This shall include re-establishing World Mental Health Watch.

- Respectfully suggest that – the WFMH take a strong stance against the use of restraint and seclusion.

- Respectfully suggest that- mental health supports for every individual shall include psychosocial, respectful, and recovery-oriented services. Additionally these services shall include properly trained and mentored peer support workers.

In conclusion we state together that we can and do go on to live full and contributing lives:

We are not weak
We are not broken
We are not damaged
We are whole
We are strong
We are proud
We are recovering
And above all we are HUMAN

Thank you for the opportunity to make this declaration and for your respectful listening.

When we walked off the stage, everybody applauded and gave us a standing ovation. It was a very special moment. The WFMH organization asked for a copy of this declaration, and will put it on their website, to be able to take further action.

Afterwards we, the users, took time to hug each other and say goodbye. The next World Conference will be in Buenos Aires, Argentina, in August 2013. (We all need to start saving, or get a scholarship or funding or something).
What a special day. It seems to be the first time that users spoke at the closing ceremony, and the first time that we were appreciated so much by all the professionals. My eyes still get wet when I think of this very unique and special moment. We are making history here. We are not broken, we don’t need to be fixed, we are strong, and we are above all human.