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What I did on my summer vacation, or, some thoughts on survivor activism worldwide

By Judi Chamberlin

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This summer and fall, I was fortunate in having the opportunity to travel to Japan, Ireland, and Sweden, and to meet with survivor activists from many countries-both old friends and people I was meeting for the first time. From all of them I learned about the many ways in which former patients are speaking up for themselves, organizing, and working to transform the mental health systems of their respective countries.

The first trip was to Japan, where I was scheduled to attend the World Congress of the World Federation for Mental Health (WFMH), and also to speak at the concurrent International Seminar on Mental Health, which was on the topic of employment. I left for Japan directly from the Alternatives '93 conference in Columbus, and so was already energized by the high level of activism that I saw there in participants from all over the United States.

WFMH holds a world congress every two years, and I have attended earlier congresses in Brighton, England, and Washington, D.C., but I had not been to one in a number of years. At the last world congress, in Mexico City in 1991 (which I was unable to attend), the survivors present had organized the World Federation of Psychiatric Users (WFPU), and I was primarily interested in catching up with WFPU's activities. In fact, almost all the meetings while at WFMH were of the WFPU, and they were extremely satisfying. There were delegates from Japan, New Zealand, Holland, England, and Sweden. Since there were WFPU meetings every day, I saw very little of the rest of the Congress. My old friend Mary O'Hagan from New Zealand had been elected as chair of WFPU at the Mexico City meeting, and she had been working to build the organization since then, including the publishing of several newsletters. WFPU's mission is to try to unify survivor voices worldwide-a most difficult task, especially for a virtually unfunded organization!

If you would like to join WFPU and subscribe to its newsletter, the address is c/o ANOPS, Box 46-018, HERNE Bay, Auckland, New Zealand.

Next I joined up with the Canadian delegation, which had been invited to take part in a conference in Nerima (a district of Tokyo) that would bring together Japanese and Canadian ex-patients and professionals. I had met the Japanese organizer, Mikio Kuraki, in Vancouver the previous spring, and he had asked me to be the sole U.S. representative at the conference.

Everything I had heard about the Japanese system was scary. While the number of people per capita incarcerated in psychiatric institutions is going down all over the world, in Japan it is actually increasing. Most psychiatric hospitals are owned primarily by psychiatrists, who have an economic interest in keeping people locked up. And Japanese law makes relatives responsible for any trouble that released patients might get into, which gives families, as well, powerful reasons for keeping their relatives in institutions. Yet there is a Japanese ex-patient self-help movement, and we heard from a number of participants about their self-help clubs and activities. One group I heard about is called Sumirekai, named for a flower that a group member described as small and unobtrusive by itself but large and impressive in a mass-a nice image! During my final week in Japan I took part in a cross-disability USA/Japan conference, held in Kofu City in Yamanashi Prefecture, west of Tokyo (the location of Mount Fuji). This conference has met every other year, alternating between the U.S. and Japan, and brings together many people with disabilities, including psychiatric survivors. I had the chance to get to know a number of U.S. activists in the independent living movement, and to met many of their Japanese counterparts as well.

Japanese disability activists are quite impressed by the Americans With Disabilities Act, and see it as a model for legislation in Japan. The U.S. delegation kept stressing the importance of the cross-disability concept, and the necessity of including people with psychiatric disabilities in any legislation they propose. As it stands now, Japanese law makes clear distinctions between psychiatric and physical disabilities; for example, I discovered to my horror that the pension of a person with a psychiatric disability is about half of what a person with a physical disability receives! In my two-and-a-half-week visit, it was hard to get more than a series of quick impressions of this complex and fascinating country. The Japanese psychiatric system was one of the worst I've seen in my travels, but it was good to know that so many survivors and their allies are recognizing the problems and working for change. There are positive signs, including the tiny, minimally funded Tokyo Center for Human Rights and Mental Health, many local self-help clubs, and several national ex-patient organizations. And, most importantly, Japanese survivors now have the international contacts that should help them in their struggle for rights.

After only two weeks at home (barely enough time to get over the jet lag), I was off again, this time to the World Congress of the World Association for Psychosocial Rehabilitation (WAPR) in Dublin, followed by a two-and-a-half-week visit to Sweden. I had been to the previous WAPR congress in Montreal two years earlier, where I had spoken at a well-attended plenary session about the need for meaningful survivor involvement in the organization, and the necessity for ending force treatment, and had received what I always remember as half a standing ovation (the other half of the audience remained quite firmly in their seats)!

At that congress, I had met a number of Canadian survivors, and so was expecting to meet their Irish counterparts. But the Irish organizers had done virtually nothing to promote survivor involvement, and the small group of survivors there (from the U.S., Canada, England, and Holland) had very little impact on the congress as a whole. However, the next congress, which will be held in Rotterdam in the fall of 1996, should be better, both because the Dutch are more aware of empowerment issues and because my good friend Rene van der Male (who I saw in both Japan and Ireland!) will be looking over their shoulders to remind them to include us!

Ireland and Sweden

Then it was on to Sweden, where I would be the guest of the Swedish National Association for Social and Mental Health (RSMH), probably the largest ex-patient organization in the world, with more than 10,000 members and over a hundred local clubs. After a rather hair-raising trip (which included two changes of planes, three different airlines, and the loss of my luggage, which did show up the next day), I arrived in Sundsvall, in the north of Sweden, where I was met by RSMH activists Carl-Axel Ringsparr and his wife, Kerstin, who would be my hosts for most of my visit.

The conference in Sundsvall was an inter-Nordic meeting, involving representatives from Sweden, Norway, and Denmark, and although there were some mental health professionals involved, it was the survivors who set the tone. The prevailing language was Scandinavian (a hybrid of all the local languages), with my talk and one by German activist Peter Lehmann translated, but I was unable to participate in most of the conference because of the language barrier. But I did get to speak with lots of people individually (almost everyone spoke some English, and although they always started out by saying "I don't speak English too well," it was very easy to understand). I also got to walk around the pretty little town.

Most of my visit was spent in Stockholm, where I stayed in Kerstin and Carl-Axel's spacious apartment. I gave a couple of talks to professional groups, and also invited some of the RSMH clubs and the RSMH national headquarters (and did some sightseeing). The Swedish mental health system was quite a contrast after Japan's, being far more liberal, but there is a heavy and distressing reliance on drugs. What was most striking about my visit, however, was that the kinds of experiences survivors reported in both "liberal" Sweden and "repressive" Japan were so similar: people spoke of being discredited, not listened to, not respected, and, in general, dehumanized. It really brought home to me the limitations of even the most liberal, community-based kinds of psychiatry, and the urgent need for alternatives that we create and control.

I was impressed by the RSMH clubs that I visited; they seemed like real havens from the mental health system (two of them were inside psychiatric hospitals!). The RSMH has been criticized by some Swedish survivors for being too willing to compromise with the system, and I did see some evidence of this, but I also saw how empowering it was for survivors to have a large and well-recognized organization that they could identify with and that represented their interests.

My last stop in Sweden was in the far south of the country in the town of Malmö, where I had been invited by the director of psychiatric services for the area. His plan is to close the psychiatric hospital completely, and have all services delivered in the community. Already, patients were being taken into town and shown various apartments where they could live-they were giving people choices, not just plunking them down in "residences" and "programs," so that seemed like a good start. I asked what would happen to the hospital once all the patients had left and was told "I don't give a damn"! I also spent a few hours in the nearby town of Lund, the home of another old friend, Maths Jesperson, one of the more radical RSMH members, and someone I hadn't seen in almost ten years, the radical psychiatrist Lars Martensson. We visited the local psychiatric hospital (which was not slated for closure, as far as I could tell), which had its own RSMH club, and we also saw the RSMH club in town. I was disappointed that I hadn't allowed myself enough time to take the hydrofoil from Malmö to Copenhagen, Denmark, but I will have the chance to visit Denmark this May since I've just been invited to speak at the Second European Conference for Users and Ex-users of mental Health. So stay tuned for the further adventures of SuperMental Patient!