| 4. Congress of the European Network of (ex-)Users and Survivors of Psychiatry "Into the Next Millenium – Moving Forward to Our Own Future" Luxembourg, February 19 – 21, 1999Report of Peter Lehmann, Chair | Bev Mills, Co-Chair | Gábor Gombos | Virpi Vesterinen | Iris Hölling | Stefania Dei | Clemens Huitink, Desk | Luxembourg Index Reports of the Chair, Board and Desk
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Peter Lehmann In our last conference in Reading we decided a 12-point-programme. Point 1 was to strengthen communication inside the Network and to strengthen the connection between the board and the regions. Only 2 newsletters in this period are not to be called a big progress. To publish a documentation about our aims, point 2: a publication about the history and aims of the Network was published by a German author, Karin Roth, but in the German language; beside this articles about ENUSP have been published by us in different magazines, for instance Out Loud and the Mental Health Observer. Make use of new technology, point 3, we tried to install chat-programmes for the board to communicate quicker and cheaper, but we did not succeed. But meanwhile we succeeded with e-mail-contact, and our Dutch friends developed the first Internet-presentation. Building links and help to develop the user/survivor-movement, point 4, we tried by using the working-groups from ERC, the European Regional Council, which is the European section of the World Federation for Mental Health, and other working-groups and congresses. Seeking funding to finance net-workers in countries that are not linked to the network, point 5, is as problematic as point 6, helping to raise finances to make seminars on national levels. We tried to organize an international congress about self-help, alternatives and advocacy in Germany, but we did not receive the money we wanted from the European budget "Promotion of Mental Health". We have very, very little knowledge in the field of raising money. Collate knowledge about law and forced treatment, point 7: I guess this is a field nothing happened. Point 8, run mutual actions against compulsion and for the right to get the help needed: In April 1997 we wrote a Comment to a WHP-paper: "Quality Assurance in Mental Health Care. Draft: Human rights of people with mental disorders" with proposals about national legislation, monitoring bodies, equity and access to treatment, specific facilities. There we pleaded for
Originally the comment should be published in the WHO-series of documents on Quality Assurance in Mental Health. Now it is published in worked-over form in "Forum – The Declaration of Madrid and current psychiatric practice: users' and advocates' views", in: Current Opinion in Psychiatry, Vol. 12 (1999), No. 1, p. 6 – 7, a magazine of the World Psychiatric Association. At STAKES, a Finnish organisation, I held a speech about promotion of mental health and perspectives of users, ex-users and survivors, afterwards it was published. Speech and article should be the basis for the called application. At the 5. International congress on World Association for Emergency Psychiatry, you can call it "International Organisation of the Friends of Forced Treatment", I held a speech about ways to avoid forced treatment, and this speech was published [in: Michel De Clercq / Antonio Andreoli / Suzanne Lamarre / Peter Forster (eds.): "Emergency Psychiatry in a Changing World". Proceedings of the 5th World Congress of the International Association for Emergency Psychiatry, Brussels, Belgium, 15 – 17 October 1998 (International Congress Series No. 1179). Amsterdam / Lausanne / New York / Oxford / Shannon / Singapore / Tokyo: Elsevier 1999, pp. 95 – 104]. Maths published it, too, in the latest European Newsletter. Point 9, collect and distribute knowledge about certain themes like electroshock, Psychiatric Will, alternatives. I participated at a Dutch Congress on will declarations in advance. A book about electroshock should be published by the Canadian Don Weitz with contributions by different European activists, but there some problems in communication and a lack of mutual information, so the project was a failure. The board of ENUSP supported the proposal: Romme and Escher for Alternative Nobel prize, as appreciation for their creation of the Hearing-Voices-Network, but this action was without success. To strengthen relations with European and international bodies, point 10, I participated at the WFMH congress in Lahti, where between others an international Panel of (ex-)users and survivors of psychiatry was held. It was not easy to get this congress-participation for a lot of ENUSP-activists paid. We brought in a resolution at the WFMH congress, that the World Network of Users and Survivors of Psychiatry are considered as the authority on (ex-)users and survivors' issues, which was accepted after a short discussion. In Lahti Karl Bach, the former chair of ENUSP, gave a keynote speech about new strategies to understand madness, challenging the medical model and proposing a user-developed model of support. Being part of the Executive committee of ERC I took part at some board-meetings and conferences of the ERC and I tried to influence the new statutes of Mental Health Europe, the independent part of the European section of the ERC, to strengthen the position of (ex-) users and survivors of psychiatry. My board-colleagues or Clemens mainly did the communication with the European Disability Foundation and other European Organisations and groups. Build new structures of mutual co-operation between the network and European NGOs allies, point 11, was in principal the same work as in point 10. The last point, 12, fight to directly represent us in the international arena some board members, me included, participated at the Congress "Manage or Perish: the Challenges of Managed Mental Health Care in Europe", October 7 – 10, 1998, Psychiatric Clinic of the University of Geneve, run by the World Psychiatric Association. Some of our contributions have been published in: Josè Guimón / Norman Sartorius (eds.): "Manage of Perish? The Challenges of Managed Mental Health Care in Europe", New York / Boston / Dordrecht / London / Moscow: Kluwer Academic / Plenum Publishers 2000. One action we succeeded was to finish the statutes. I hope you will accept them. I did what I could. We all did our best. We could not do more. Thank you very much to my board-colleagues and the desk for the support. As the chair am lucky to have survived and to have this conference. Thank you very much.
by Bev Mills, Co-Chair
I can remember at the last Network Conference in Reading, England listening to the report of the previous board. Karl Bach reported that members of the previous Board had at some point or other gone mad in one way or another. I remember later as a new board member, myself, being determined that I was not going to go mad during my time on the board. You have guessed it – I did go mad. I was sectioned under the Mental Health Act in England, compulsory detained and forcibly treated (with three neuroleptics at once). I am sure that I need say no more other than it is this sort of experience that is the common bond that we all share. My time in hospital at the hands of psychiatry was a painful reminder to me of the ràison de ètre of the network. I have to say that I have felt an enormous frustration – knowing that going mad prevented me from attending 2 board meetings, being involved in the Marienthal project and from participating fully as the representative for ENUSP on the board of CEFEC. I felt unable to participate in several things – which felt personally very hard. My experience in hospital left me with little self-confidence and very depressed – thinking that I should have done things better or differently – a sense of personal disappointment. However being part of the Network and a member of the Board really helped me gain a sense of who I am, a sense of purpose and feelings of self worth. So what have I done as a board member and as Co-chair of the Network? As I mentioned earlier I was nominated by the Board as to represent the Network on the Board of CEFEC. In reality I have only participated fully in one CEFEC event and that was to give a keynote speech in Zaragossa, Spain in October 1997. My speech was about Citizenship & Social Justice in relation to employment & training. I do feel that as soon as I went mad CEFEC seemed to have great difficulty in communicating with me as the ENUSP responsible member and it took them some time after my bout of madness for CEFEC to acknowledge me as the ENUSP representative on their board. Other Conferences that I have participated in have been, WFMH; Lahti Finland, July 1997 – this was a great opportunity to meet up with (ex) users & survivors from around the world, The European Day of Disabled People, European Parliament, Brussels, December 1998, this was an interesting conference as it was organised by the European Disability Forum, and was a great opportunity for me to meet members of the EDF – the very forum we greatly debated joining at our last Conference in Reading. In the region for which I am responsible, we have not had regional members meetings; this has primarily been because of lack of money. My contact with member organisations has been on an informal basis via telephone. I realise that in order for the network to succeed we need to develop more formal ways of communicating – that is one of the reasons I wanted to facilitate the workshop on internal organisation of the network at this conference. The network has many strengths and although has been personally extremely demanding it has given me so much back – I do hope that in some small way I have been able to give something back & contribute to the strength of the network.
by Gábor Gombos
Civil society is a just forming phenomenon in East Europe and up to now (ex-)user/survivor controlled organisations are exceptional. Most associations and groups are with a mixed membership: professionals, family members and friends are also involved in the so-called user activities. Empowerment of (ex-)users/survivors can hardly be effective in such kind of organisations. In spite of the similarities coming from the common experience of dictatorial regimes, East Europe is not a homogeneous part of the world. Actually we have a fear that another iron curtain is being built: some of the Eastern countries will join EU while others will have to wait a long time to become member states. People from the latter countries will need visa to go to Czech Republic, Poland or Hungary. That discrimination does not come from ENUSP, however we must keep in mind that our friends from certain countries will need better organisation and more support from ENUSP to participate in the European (ex-)user/survivor movement. Nevertheless, East Europe is not just a problematic part of the world; it is also a dynamically changing region. All of us can learn a lot from the (ex-)users/survivors' experience and their initiatives there. During the reported period, because of the lack of funding we had no regional ENUSP meeting. However, we used other regional events with meaningful (ex-)user/survivor participation to spread information about the Network, to collect information on up to date issues and to strategise our movement in East Europe. The most important events where ENUSP had a contribution were the Hamlet Regional Workshops (Sept 1997 Sinaia, Romania; Oct 1998 Siófok, Hungary). ENUSP was a co-organiser of two international seminars on human rights issues funded by Mental Disability Rights International (Washington DC) through its project supported by the Open Society Institute. A meeting was held in Hungary (May 1998) with 25 participants (mostly (ex-)users/survivors) from 5 East European countries, another symposium took place in Poland (Dec 1998). We collected information on various mental health legislations in the region and on the legal conditions and ways compulsion is used in psychiatry. In the near future the proceedings of these seminars will be published. ENUSP was not really successful in delegating other survivors from East Europe than the board member to international conferences. The good exception was the World Congress of the World Federation for Mental Health (July 1997, Lahti) where Milena Gueorguieva (Bulgaria) and Jan Gottwald (Czech Republic) also participated. My personal experience with the professionals' conferences was quite ambivalent. In certain cases ENUSP has been formally invited but was not provided with the minimum conditions to have a real impact. I do not think ENUSP should be represented in those meetings. At the same time it is important to contribute to those events where we are listened to and to have a real (ex-)user/survivor representation there. I was invited to the board of a project called European Network on Constraint and Collaboration in Psychiatry as one of the two (ex-)user/survivor representatives. This informal network was established by (ex-)users and professionals to minimise constraint and to optimise collaboration practices between users and service providers. Although at present, until an ongoing is completed, East European countries cannot join that project, we can utilise the information collected by them through our presence there.
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Virpi Vesterinen The time between January 1997 and February 1999 as a board member of ENUSP was a meaningful learning process to me. Before that I was not very familiar with the structure of EU or with big conferences. Now I am more familiar with the former one. The biggest challenge for me was the work with the statutes, which were finalized in spring 1998. In the same year started a EU double-project "Equal Opportunities and Employment for the People with Psychosocial disability", which I took part as a member of the steering group. Co-operation with the EDF has been important to me. I was a representative of ENUSP/Mental Health Europe in the Working Group on Women with Disability and tried to influence on the Women's Manifesto. I also participated in the training course for girls and women with disability preventing sexual violence in April and October in 1998. The lack of regional meetings was the biggest problem. Working became lonely and dizzy. I was not able to get support or help or other points of view when needed. On the other hand I was not able to full fill my task as a representative of Nordic and Baltic countries. Working together with the other board members has been an interesting trip. It has widening my world. "Psychiatric Will", Magnus-Stenbock-Hotel, self help groups in Prato, Run-Away-House, "Coming Down from Psychiatric Drugs" etc. are now part of my work. Thank you all for that.
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Iris Hölling I enjoyed the constructive atmosphere in the board, the endeavour to constructively work together.We were busy with getting funding for ENUSP, working on the Statutes which took us a lot longer than we expected it to take. I, personally, had a lot of projects and ideas joining the board two years ago, but I could not realize most of them. Like the others, I went to a lot of the conferences that were mentioned before. Moreover, I represented ENUSP at the Marienthal Social Firms Network in a working group on worker participation and I did a big presentation of ENUSP at a Marienthal conference in Klagenfurt, Austria. One of the best experiences was the (ex)user/survivor of psychiatry meetings we set up at the WFMH-Conference in Lahti, Finland, 1997. However, the World Network of (ex)Users and Survivors of Psychiatry (WNUSP) that was created there has not been very successful so far. Communication has been difficult on a world wide level, as it is already on a European level. I had ambitious projects in my region which I did not realize because of a simple lack of time and resources. To me, the vital question that remains open to discuss is: Where do we want to put our energies? What I have learnt from my two years on the board is that the danger in participating so extensively in conferences lies in forgetting about or losing our own topics. What I find very stressful in being at "professional" conferences is being in a space that is not my own, but defined by others. A space where survivors of psychiatry are marginalized. I find it is consuming an enormous amount of energy and I doubt the outcome because professionals would need to change their attitudes by themselves. They will not do it without us fighting for it, but I find the prize for the little we achieve very high. I wished that I had had more time and energy left for communication within my region. Another project that I consider very important for ENUSP is the Directory of Alternatives. The questionnaire for that was sent out to all of you, but the response was very little with few exceptions. I would ask you all to contribute to it and send the information you have about your countries to the Desk so that we could make it work. Thank you
for your trust in me to have me on the board. And thank you, the other board members,
for the productive time on the board. Report from the Mediterranean region by Stefania Dei (did not arrive)
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Clemens Huitink After the Reading conference I was confronted with a totally new board. At that time I was in my office for six months and that was just enough to get acquainted with the old board. In the beginning it was from both sides a difficult process to get used to each others possibilities and impossibilities. But in a very open atmosphere we were able to get rid of the first problems. And there were many problems. It was for instance very uncertain at that time if we were able to get funding for the Network and the Desk. Till that time the work of the Network was only supported by the Dutch government and the secretary was paid by the Dutch ClientsUnion. That makes the relations between Dutch Government, Board of the ClientsUnion, Board of the Network and last but not least the secretary a very delicate one and it is always more or less balancing. But fortunately we all had an open eye for that and we respected each others position and that became a basis for our work. Now I have given you the position in which the Desk has to operate and now it should be clear to you that the secretary has a lot of work to do to make sure that these relationships are going more or less smoothly. I consider it as our biggest success that in this board-period for the very first time the Network succeeded in getting money from the European Commission. That means that we are now recognized as an official NGO, working in the field of psychiatry and mental health. Although there are certain conditions and restrictions in spending the money we are glad that the European Commission has done that because it enabled us to strengthen our work. In getting money from the European Commission there are two big problems. Officially we can not spent our money in East European countries, in fact our work is limited to the European member states. It is with thanks to creative bookkeeping that we were not hindered so much by this condition but it is important to keep this problem strictly in mind. The other problem is that we only get money from the European Commission if there is still another source for financing. Till now we are thus still dependant from Dutch government-money and that is very bad because Dutch government will not be responsible for both desk and network as the only government. At the end of last year we started an action to involve more governments into our work. So far the results are very poor, so Desk and Network are again in danger. But enough for this moment about the dangers. An important task for the desk is to facilitate the board meetings and to function as a kind of transfer point for board members and organisations. The desk functions still closely with the board and tries to fulfil a coordinating and stimulating role. We know each other quite well and I think the desk fulfils that task. But it is very hard to keep good contacts with our member organisations. I like to remind you that communication is a two way thing and the desk is not responsible for that on its own. Other initiatives from the desk are still concentrated on promoting knowledge about the Network and to try to get more influence in other organisations. Last year the desk had to spent a lot of time in organising conferences about the implementation of the UN standard rules and about better conditions for employment. We did it in The Netherlands, Italy, Denmark and Portugal and thanks to that we were able to build better links with the user-organisations in these countries. When I speak on conferences I mostly make a statement as thus. What moves us is anger. Anger about psychiatry, anger about bad treatment, anger about compulsion. But we will not stuck in our anger. We will go into cooperation not as a matter of course but on our own conditions. And if the desk can play a role in that we will do it because we can do it! Thank you for your attention. |