National Empowerment Center - Articles
In April and May, I visited Holland, Norway, the Czech Republic, Hungary, Slovenia, and England, meeting with consumers/survivors and their organizations, as well as with mental health professionals. The trip started at a large international conference, the World Congress for Psychosocial Rehabilitation, in Rotterdam, Holland, attended primarily by mental health professionals; however, I did meet up with survivors from Holland, Great Britain, Brazil, Italy, Denmark, Sweden-and U.S. colleagues Pat Deegan, Deborah Anderson, and Joel Slack. However, very little attention was paid to our issues, except in the workshops we ran ourselves, which were very helpful in learning more about how other groups work, and in countering the heavy professional bias. I was asked to speak at the closing session, where I raised a number of questions about the relationship between professionals and consumers in an organization supposedly about "rehabilitation," and also asked for a moment of silence for the victims of psychiatry.
After several days of visiting various Dutch friends, it was off to Norway, where I had been invited (along with Pat and Deborah) to a conference on empowerment sponsored by the Norwegian government and aimed primarily at survivors. I was met at the airport by five members of the survivor group Aurora, so I immediately felt that I was among friends (even though I had met only one of them before). I was quite surprised and delighted to fin d that the hotel where the conference was to be held was on top of a mountain, with a beautiful view of Oslo spread out below.
I had a couple of days for sightseeing, and for getting acquainted with my new friends, before the conference started. The night before the opening, after Pat and Deborah had arrived, we met with some of the people who had planned the conference, including officials from the Ministry of Health and Social Affairs, professionals, and two survivors from the group Mental Health Norway, Bodil Pedersen and Erling Jahn ("users" is the preferred term in Europe, but it certainly sounds funny to American ears!).
The next morning, as the conference was about to start, I noticed that it was snowing! It snowed lightly most of the day, but it didn't stick to anything. I expected the opening of the conference to be boring, but two officials spoke about the roles and involvement of users, rather than about mental illness and biological research, as I was expecting. One of them quoted a user's statement about what he needed in life: "Someplace to live, something to live on, something to live for, and someone to live with." Then there was an opening panel, on which Deborah, Pat, and I all spoke, along with Bodil and a psychiatrist, Unni. Simultaneous translation was provided for the plenary sessions, but the workshops were held in Norwegian, so we spent this time talking with people individually.
One of the purposes of the conference was to promote cooperation among the various groups, and to encourage the Ministry to consult with the groups about policy and practice. There were a lot of questions about how this worked in the U.S., and in other countries. We knew that there was some tension among the groups, and we assured them that this was quite normal and happened all over, but we emphasized the value of coalitions and the way in which each group remains totally independent.
Once the conference ended, I had several days to get to see more of Oslo and meet with a number of movement activists. Siri Lill Thowsen of Aurora took me to see the big May Day parade (May Day is a major holiday in most European countries); to our surprise, among the marchers (who mostly represented various trade unions) was a group marching with signs against abuse in psychiatric institutions (in English)!
I visited a drop-in center, called "31B," at which I felt very comfortable and at home. (I found out that it had been some members of this group that we saw in the parade.) I met Tormod Bakke, of the group We Shall Overcome (which was founded in 1969, and may be the oldest survivor organization in the world). I also met Hakon Sandoy and Ashild Brunvoll, husband and wife film makers who are completing a film about Arnold Juklerod, who was a cause celebre in Norway until his death earlier this year. Arnold was locked up in a mental institution for being an eccentric, difficult person, then refused to leave when he was discharged until they cleared his name, which the hospital, of course, refused to do.
For the second half of the trip I had a traveling companion. Victoria Hornby is the Director of the Hamlet Trust, based in London, which funds ex-patient self-help and advocacy groups in Central and Eastern Europe. She and I met up with each other in Prague (Czech Republic), where we visited several professionally run programs, but were unsuccessful in trying to meet up with some of the former patient activists whom I had met during my previous trip. It was disappointing to learn that the group Fokus, which ran the projects we saw, had survivors on their board and staff when they started, but no longer do. It seemed to us that this was movement in the wrong direction.
But things improved when we went to Budapest (Hungary), where we spent two full, busy days. The first one was with a group called Way Out, which was started by a group of people in a hospital ward run by a very enlightened psychiatrist, Laszlo Lajtavari. They have made him an honorary member of the group, which meant that he could attend meetings but could not vote. The group is led by Andras Adorjan, who is a former chess champion. Laszlo, Andras, and several other members of the group took us on a sightseeing trip, and then we attended a group meeting, at which we got to talk with about twenty group members.
The next day was equally full, and was spent with some of the members of another group, the Voice of Soul, led by Gabor and Katia Gombos. They also wanted to take us sightseeing, so we did quite a bit of walking in two days! The day ended up with what was described as a "goulash soup party"-we went to a little village outside Budapest, where some members of the group had cooked an enormous pot of this "soup" (really a stew) in a big iron pot over an open fire!
Then it was on to Ljubliana (Slovenia). There we attended a conference that was held in a large guest house on top of a mountain in the Slovenian Alps, near the border with Italy. The setting was magnificent (although the ride up the mountain, on a narrow road full of hairpin turns, was rather harrowing), and the conference was inspiring. There were about forty people from all over the country, representing several organizations and smaller support groups. Both Victoria and I gave workshops, and we attended several others (various people took turns translating for us).
Slovenia has a very well developed survivor movement, and there are good connections being made with groups in other parts of Europe. Igor Spreitzer, of the group Altra, is a member of the board of the European Network of Users and Ex-Users in Mental Health, and Tanja Lamovec, another Altra member, had recently spent some time visiting the U.S., where she attended last year's NARPA conference.
We had a day to do some sightseeing, including going even higher into the mountains, and visiting the scenic town of Bled, with its beautiful lake, but then it was time to leave. London was, of course, home for Victoria, but I still had several days of my trip to go. While in London, I gave a workshop for a number of people from different parts of England who were active in their local organizations.
It was an exhausting trip, but it gave me a lot of confidence in the strength of the survivor movement worldwide, and provided an opportunity to deepen many old friendships and make many new ones. Everywhere, our issues are the same, and everywhere, survivors are getting together and figuring out strategies to bring about change.
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