Victories on a long day of work

Today was the second conference day of the World Congress of the World Federation for Mental Health. And again I had my poster presentation in the exhibition hall where the lunch and tea/coffee was served. Maybe today it went even better.

The conference on itself was far less inspiring as yesterday. It was just another average conference day, with people speaking about several projects and themes. Nothing really special in my opinion, but I also missed quite a bit of the programme.
This morning I had to get up very early again, before 7 am, and I walked again to the International Convention Centre. First I went to the workshop on Mental Health in the 21st century: confronting uncomfortable lessons from the industrialized world, by N. Yoganathan and Jenny Willis. When I walked in they were talking about history, about Phillipe Pinel (1793) who is about the first person that we know about that released the chains from the “insane people”. And about John Conolly who started the non-restraint movement in 1839, during the times of the Lunatic Act in the UK. I already knew this part of history, and there seemed to be no speed in this workshop. They had handed out a questionnaire for interactive participation, with questions on stigma, personal values and perception and so on, which we supposed to fill in during this workshop. But I felt like I wouldn’t be getting any wiser from this workshop, and I felt some regrets that I wasn’t at the session of oral presentations called Service Users. So I shifted to that one, and hoped to get some useful information there.
The first speaker at this Service Users session was Yoram Cohen from Israel, who told us about his organization ENOSH, which was initiated by family members in 1978 to support users. Basically we got an insight of his organization, which has big funding and is able to do quite a lot, like advocacy and protecting rights, social and economic inclusion, empowerment and improving the quality of life of service users. They had an occupational club, where paid work was available for users, and they organized day trips. For the 25th anniversary of ENOSH they had drafted a declaration on patient rights, with a guidebook, which was given to politicians and other stakeholders, and they had influenced the situation significantly. The highest position of a user was Director of Recreation. I can imagine that it can be an inspiring example to others, but to me it was just another user organization.

Then Charlene Sunkel held a presentation on The impact of the Gauteng Consumer Advocacy Movement (GCAM) on existing members in South Africa. She told about GCAM’s activities to support the users and to educate the public about mental health, such as the advocacy journal called “Walk this way” that they produce twice a year, of which at least 85% is written by users themselves. They also have 3 theatre plays called “Madness revealed” which captures personal life stories on several mental health problems, such as depression, schizophrenia and also a forensic story. In these plays they also address the existing misperceptions on mental health and oppose that it would be a curse from ancestors or a burden. GCAM had also done a questionnaire amongst its members, to see what type of support and activities they value the most, and themes like more insight on mental health, more treatment compliance, improved social relations, improved social skills, and awareness on rights were the main themes. Some of the members are now actually proud to tell others that they have mental health problems, and take on the role to tell others not to hide their children, because they can be helped. GCAM also organized a protest march to promote human rights for the users, which was in the newspaper referred to as “nutters protest”, which shows their position in the community very painfully.
Other users in the room asked how they could get funding if they were seen as crazy, because this is a huge obstacle for them too: they are seen as incapable of handling money and manage organizations. All user movements know: funding is a nightmare and it seems to be nobodies priority. Basically they need NGO’s for funding, or they need to sensitize the people, which can be done for example by VIP’s who might confess that they also had mental problems.

The third presentation came from SADAG (the South African Depression and Anxiety Group), about SADAG’s Counselling Container Programme- a novel intervention for mental health services in peri-urban settings. SADAG has a free counselling container based in a slum in Diepsloot. About 85% of the persons would first go to a traditional healer, before considering to go to a western-like organization for counselling. Besides that they also distrust NGO’s because they leave when the funding stops. SADAG has got a container, sponsored by janssen-cilag pharmaceuticals, which they placed on a very visible place in the slum, and where free counselling is provided for the people. Of course there is a lot of suffering in such a slum, where people live very close to each other in very poor circumstances. They told us about a desperate woman whose daughter of 5 years old had been raped by her boyfriend, and they needed to care for both of them. And also about an 11 year old boy who tried to commit suicide at school, which had traumatized the parents, other kids and the teachers.
SADAG helps about 45 persons a day with free counselling services, and they have succeeded in establishing relations with the police and the hospital, so they can refer to one another. They have even established contacts with local traditional healers, and are by now accepted in their work.
SADAG gives away free education material, such as books with drawings and a sound element for people who can’t read (such as the book: living with HIV and AIDS doesn’t mean living with depression – which they gave us a copy of).
To be honest I didn’t know why this presentation was put in the session called Service Users, because it was mainly about providing counselling. But afterwards I found out that SADAG was originally founded by family and users. SADAG is a well known organization that has projects in every district of the country, for example projects like the Suicide Crisis Line and other thematic help lines. I wasn’t the only one who found it suspicious that they were getting funding from a big pharmaceutical industry, other users also felt that (but I do understand they can’t be critical, because money is money, and it surely isn’t a bad project, nor a bad organization, They are doing great work in supporting people who would otherwise have no access to this form of mental support. I just hope that they aren’t going to grow into becoming a psychiatric hospital, funded by this pharmaceutical company). So somehow I did get mixed feelings by this, but I will give it the benefits of the doubts.

During the tea break I wanted to put my poster on the poster board, which now did have the rights size. But I was denied access because I had forgotten my badge. And although they recognized me and I was standing there with a lot of conference material and a poster, I still had to get a badge. So I walked back to the hotel to get it, and I missed a part of the conference. When I came back I got stuck in various nice conversations, and I didn’t attend any other sessions before lunchtime.

Then first I had put my poster on a free spot on the poster board, but it was just around the corner out of sight, so I decided that I should better hang it on a door, way more visible. Again people were very interested to hear my model, and every time when I was explaining it other people got interested. It kept on going. One lady said that she had heard people talking about my poster, saying that it was the best poster out there. And one man, a teacher from the US, actually asked me to explain the model, and he recorded it all with his camera to show it to his students. He had been waiting there for me, after Ronald Shaw (another user that was also at PANPEP) had told him I would be back.
Then after lunch time the security came to say that it wasn’t allowed to stick anything on the door, so they asked me to move again. By that time there were again some free spaces on the poster boards, so I moved there again, to a visible place. Then again a lot of people came to ask questions.
I got rid of almost all of my leaflets, and there is just a small amount left of the poster copies to give away. I had some very interesting dialogues going on, and I was able to answer all the questions convincingly. I felt very proud afterwards.

I also went to the registration desk to sign up for a Tour, but unfortunately the tour option for Valkenberg psychiatric hospital is already booked full (although Moosa would help me to make sure I got on that tour). There is a small chance that I can still sneak in one way or another. I already talked to the organizers, and I am now using my network to see what I can do. I really really really hope that I can still go there. I am also invited to come to Lentegeur next week (another state-run psychiatric hospital). It would be very nice if I could see both. I keep my fingers crossed!
It took a lot of time, and also a bit of stress at the tour registration, so again I missed some lectures. I went to the Service Users Lounge, a place where the users can relax. There was a small meeting, because the users wanted to make a statement, and I agreed with what they had made.

Then it was already 16.00 and the final sessions started. I went to the workshop Promoting recovery: effective interventions for prevention and promoting, by Janet Paleo and Anna Gray, both from the US. They held a lively presentation on Focus for Life, which was about resiliency training, which is about how you deal with it when life slaps you in the face (and we all experience that). Will you fall down or remain standing? Your personal perspective is playing an important role in this. When people are in their lives focussing on illnesses, they generally don’t feel better and their dreams are reduced and locked away (“you can’t do that, it’s too much for you”). They see -or are taught to see- negative burdens instead of positive challenges. They feel like broken people, who need to be fixed and are weaker then others (pathogenesis). But there is a way to turn this around, by focussing on wellbeing and health (salutogenesis). People actually become stronger by having a mental problem, they become wiser, and nobody is broken or needs to be fixed. Sometimes you meet very strong people, and all their friends are dead or in jail, but somehow that made them stronger. Resiliency (the ability to bounce back when you are stretched to a maximum) is about your focus on life, and you are responsible for your own focus. It’s a big difference whether your mind tells you how sick you are, or when your mind tells you how wonderful you are. And life doesn’t happen inside your brain, so the running thoughts are no good (called the I’m-no-good-path). Life happens on the outside, so you have to speak out and just ask for anything you need. There are people willing to help you, they like to do that, they are there to give you your humanity, and make you a person (Ubuntu). So life is what you make of it.
It was a nice and inspiring workshop, like a good peptalk, but when I relate this back to mental health problems, I’m not sure whether this is an absolute truth, and if all mental health problems originate from an underdeveloped personal focus and an environment that focuses on disabilities. It’s something to think about. But in terms of recovery it surely helps to be positive, and focus on abilities. I liked the presentation, and I also liked the fact that they call themselves PROsumers: persons who are PROactive in their recovery and PROvide back to the community.

During this session I got a text message from a friend, saying that the UN wants to abolish isolation cells, and congratulating me with this victory. So right after the workshop I went to the exhibition hall where 4 computers with internet access were available for public use. I looked it up, and indeed:
The Special Rapporteur on Torture, Juan Mendez, says: Solitary confinement should be banned in most cases in prisons, and absolutely prohibited in the case of juveniles and persons with mental disabilities (see http://www.un.org/apps/news/story.asp?NewsID=40097 )

I felt really amazing after this news, and I immediately forgot about the stress I had today (with the badge, the poster and the tour). This news made me feel so great. Simply amazing!! The traumatizing treatments will have to stop. We have won our case.
Now, in theory, the government in the Netherlands can’t go on making their law on forced treatments (isolation cells are widely used in NL as a first choice forced intervention, and second is forced medication, which is an attack to personal integrity). I hope they understand that now. I hope they see that the UN Convention on the Rights of Persons with Disabilities is a reality that can’t be denied. I hope the world finally gets to understand that users have rights. It is a special day today. Another milestone in history. Recognition for our cause.
And this change also gives more potential to my model of the Open Mind-support meeting (what my poster presentation was about), because when forced treatments are abolished, they need other models to provide care, and that could mean that my model of the Open Mind-support meeting could get more support from policymakers, or at least less resistance, and maybe more chances to extend my pilot project. But the most important thing is that the use of force will be stopped, sooner or later they have to comply to these international standards. I feel like celebrating! I am very positive and happy now.

And I am also very, very tired. So goodnight. It’s time for a nap.