Presentation in Tokyo: touching deep feelings

Today, Saturday 25 July 2015, I travelled back from Kyoto to Tokyo with Yoshi and Ryugan. At 10 AM we met in the lobby of the hotel, and Kasumi was also there to join us for breakfast. We had a burger, and then I had to say goodbye to Kasumi. We are both quite sure that this will not be the last time that we meet :) And then Ryugan, Yoshi and I took the Shinkansen-train. It was again too cloudy to see mount Fuiji from the train. And the weather was again very humid and very hot, but luckily there is airconditioning everywhere. 3 hours later we were in Tokyo, and Ryugan brought me to my hotel Tokyu Stay Nishi Shinjuku. There, Mari Yamamoto board member of WNUSP (www.wnusp.net) and JNGMDP (http://www.jngmdp.org/ ) was waiting for me. It was very nice to see her again after 2 days in Kyoto.

I had 2 hours of rest in my room, and I tried to find out how the custom-procedures at the airport work for the tax-free shoes that I bought, but it still isn’t clear to me. Also I may need to book additional luggage to bring them home, which is more expensive than I thought. I am still contemplating what to do with that.

At 5 PM I was picked up by Tokyo, the lady who was also assisting at the conference on Family Group Conferencing (FGC) last week, and she escorted me to the venue of the meeting. It was nice to see her again. At the venue, I met quite some people who had been participants at the FGC seminar last week, and it was very nice to meet again. I am starting to feel at home here. The room became fuller and fuller. I guess there were about 40 to 50 people.

At 6 PM my lecture started, and I held the same presentation as yesterday (see previous post) , but interestingly, it wasn’t the same. Right in front of me a lady started crying after hearing my testimony and my advocacy struggle. I could see that more people were really moved by my story. Also in Kyoto many people had expressed that they were very moved by my story. This is our reality. Many users-survivors carry a load of pain from horrible experiences, and when it is touched upon, it can become emotional. And this also happened at the lecture in Tokyo.

After my presentation, we had a small break, and in the meantime the questions were collected on forms, to save some time in the discussion. Mari read out the questions, and placed them in the same order as the themes of my presentation, which made it very clear and easy to follow. Questions were asked on what my family did during my institutionalization (My mum broke down and my father trusted the doctors), what the procedure for forced treatments is in the Netherlands (court-decision), how to change the practices (by advocacy and by telling the human narrative and tell what it really is about), how I managed to challenge the decision for forced treatments (by convincing the court in a letter that there was no more danger, since I had stopped self-harming). How to get involved in the law reform procedures (by being invited because my advocacy was very visible and outspoken, and then first I gave constructive feedback, rephrasing every article, but this wasn’t listened to, and when I said I had no faith in the law proposals, I was no longer invited in the process, but some participants still send me some information, and now I still respond by email to the law-makers without any invitation. The law proposals are now frozen, and hopefully the Netherlands will ratify the UN CRPD before continuing with these reforms, because then the discussion will hopefully change. And it is very good that the Dutch National Human Rights Institution gained some CRPD-awareness and that they advised the Dutch government to review the law proposals in the light of the UN CRPD, especially regarding CRPD article 12 and 14, legal capacity and liberty).

A question was asked about powerlessness, and a lack of support from major human right NGO’s in Japan, such as Japanese Bar association. I explained that in the beginning of my advocacy I also didn’t know where to start, and I just went out and hung posters. I also don’t have support from lawyers, but I did find support from progressive nurses, and also in the community. We have to work with what we have. There is no handbook on how to change the world. We just have to try to find allies wherever we can find them, and try to reach a critical mass.

Another question was about ‘early intervention’ which is in the medical model explained as childhood screenings etcetera, but in fact I meant ‘what is done with early signs of distress’, because in most countries there are huge barriers which withhold persons from asking support for mental health problems, such as the threats of the psychiatric system and taboos, and so there is no prevention of crisis, and this needs to change.

Then several personal testimonies were given by quite some participants, which were moving all participants, and also for me it brought up a lot of feelings. I also became emotional by it, and that was visible. I am not ashamed of crying when it hurts. I mentioned that, and also that the UN calls these practices torture and ill-treatment, which is the worst level of human rights violations, and we can be inspired by other UN treaties, such as on the rights of women and racial equality. It was 1994 when the apartheid regime fell in South Africa, and so the world has changed not so long ago. Also it used to be that women had no right to speak, but I am a woman and speaking here. Now there is a lot of awareness, which wasn’t there before. I find this very inspiring and motivating. There came some applause.

Then some questions were asked on Family Group Conferencing: Why talk about “Family” here? I explained that this FGC-model is not my invention, but it comes from the 80s from New Zealand and their situation with the Maori population. And since then this is a decision-making model that has spread over the world, mainly in child care services and also restorative justice practices. It was asked to give an example, and I illustrated with a case of a retired lonely man, who was drinking himself almost to death, and the first steps of the formal procedure for forced hospitalization had already been started, and then Family Group Conferencing was offered to him. He didn’t want his family to be involved, but he did trust 2 ex-colleagues, who also appeared to feel lonely after retirement. Together they made a plan to do nice things together, and with this support, the man stopped drinking and became happy again. So in this case forced treatment was avoided by Family Group Conferencing.
I also explained that in my opinion, FGC is a very natural form of decision-making, because for example, when you want to buy a car, you may call some friends and ask their opinion on several types of cars before actually buying one. It is very natural to consult others on important decisions in life, yet on mental health care issues, this is hardly done, because of stigma and taboo. But it would be natural to do so.

Another question was about how to engage with other organization of other disabilities, who may have the same prejudice and stigma towards persons with psychosocial disabilities as the general population has. I said it is helpful to focus on commonalities: Persons with other disabilities also don’t like forced treatment and want to have choice, which can be a good point to unite on.

After my presentation, several people came to thank me, and I even got several gifts. That was so incredibly amazing. I got a couple of cd’s with homemade protest music against the psychiatric system, and also a bag from this artistic lady, and I got cookies and a very nice key hanger with a superman-like cookie-figure from Miwa, and yesterday I had gotten earrings with origami cranebirds and shiruken (ninja stars) from Yui. That was so nice. I feel so welcome and appreciated. It really is a wonderful experience to be here. The Japanese make sure that everything is perfect for me. Food, taxis, a Japanese phone, a metro-card with credits, everything is provided for me. And today when we crossed a small garden of maybe 20 metres before entering the meeting building, I was stung 10x by mosquito’s (just in a few minutes), and I appeared to be a bit allergic to the Japanese mosquito’s as well, but immediately someone went to get me some relief-medicine even without my knowledge. That was so nice. Everything is taken care of. I really feel incredibly welcome.

Afterwards I had another delicious Japanese dinner with a professor of social work, who also has lived experiences, and 2 of his colleagues/students. We had a very interesting conversation about the stupidities of the current psychiatric system, and a quick dinner because the restaurant closed at 10 PM. And then they dropped me off at the hotel. It has been a wonderful day again. It is so heart-warming to be with the user-survivor movement. Nothing compares to peer contacts. It is great.

Tomorrow I will have a presentation on Forensic Psychiatry and its inhumanities (it is the most repressive system of forced psychiatry), and in Japan it was introduced 10 years ago. In Korea the law-makers are now considering to construct Forensic Psychiatry. They should learn from the mistakes in the West, and not do the same. I hope to be able to contribute to such learning.

I will have a good night of sleep now. I am finished “early” today (just past 1 AM), and tomorrow is my last presentation in Japan. Then I only have 2 visits to psychiatric hospitals and a free day in central Tokyo on my programme, and then I go back to Europe… To be honest, I wouldn’t mind staying longer in Japan. It is a safe and friendly country, with high standards on food, community facilities and friendliness, but soon I will see the other side of the Japan: the psychiatric hospitals… (and I know already quite a lot from the CAT-report of Japan on torture and ill-treatment in mental health care in Japan: http://www.jngmdp.org/e/index.php?CAT%20Report%202013 )
It already appears to me that the seemingly perfect community in Japan comes at the cost of the freedom of persons with psychosocial disabilities. I will see it soon.
Now I will have a good rest to be prepared for what is going to come.
Good night!