European Network of (ex-) Users and Survivors of Psychiatry (ENUSP): The Luxembourg-Report - Joel Slack, "Oceans Apart

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, 1999

Oceans Apart – But Still the Same

by Joel Slack, USA

In 1998, I lived in Malmo, Sweden, and consulted to their local psychiatric system on user, ex-user and survivor of psychiatry involvement and influence.

I also had the opportunity to travel throughout the European continent and visit various user, ex-user and survivor of psychiatry advocacy leaders, organizations, and programs. I want to thank all of those who hosted my visits for their friendliness and hospitality. I also want to thank you for inviting me to make this presentation at your congress.

In this address, I would first like to describe some of my general observations and then I would like to describe in more detail some of the special programs which I visited.

As an American born in 1956, I had only studied in textbooks the details of World War II. But during my year in Europe I realized that the memories and influences of World War II are still present in current day social, economic, and political discussions. More specifically, the oppressive philosophies and practices of Nazism travels into many discussions related to psychiatry or user, ex-user and survivor of psychiatry activism in Europe.

At an advocacy meeting in the United States, if someone were to compare American psychiatric practices with those of Nazi psychiatric practices, most everyone in the meeting would consider the accuser to be overly paranoid and perhaps needing more medication. However, in Europe, such comparisons are commonplace and acceptable in discussions among user, ex-user and survivor of psychiatry activists.

Especially the name of the international user, ex-user and survivor of psychiatry activist organization in Europe – the European Network of (ex-) Users and Survivors of Psychiatry (ENUSP), has been criticized. On one hand, a representative of the European Commission indicated that using the word "survivor" in its name implied that psychiatrists kill patients intentionally. Therefore he expressed apprehensions about providing funding to ENUSP if it continues to use "survivor" in its name. On the other hand, a Czech member of ENUSP, whose family-members survived a Nazi concentration-camp, left ENUSP under protest because she was convinced that the word "survivor" has historically been reserved for the "survivors" of the Holocaust and therefore it is not possible to compare the suffering and killing of millions of people during German fascism with psychiatric treatment or mistreatment.

The European Network of (ex-) Users and Survivors of Psychiatry is a dynamic organization that over the years has had to deal with many challenges, some of which are quite unique.

Perhaps the most unique characteristic of the European activist movement is the collaboration of many cultures. Participants in this movement must exercise a high degree of sensitivity, empathy, and patience toward their (foreign) peers. By doing so, they are better able to understand and embrace each others' cultural differences.

To further complicate communication among the European user, ex-user and survivor of psychiatry activists, each bring their own language and their own cultural translation of English to the table. Despite the fact that it is common for Europeans to be multi-lingual and that English is commonly used in international meetings, European activists still experience a lot of misunderstanding and frustration while discussing important issues or while developing important documents.

In Europe, there is a great emphasis on literature and art within the activist movement. Furthermore, it seems that activists understand the importance of publishing books in order to advance their theories and recommendations. In only one year while living in Malmo, Sweden, two of my peers had been able to publish books in their native language. Mr. Goran Wassby published a 300 page book that detailed one and half days of his hospitalization at the local psychiatric Hospital. Mr. Gosta Granqvist published a book "From Schizophrenia to a Better Life".

Other books authored by users, ex-user and survivor of psychiatry include one by Peter Lehmann, a resident of Berlin and former chairperson of ENUSP. He has published two books on the effects of psychotropic medicines. His most recent publication, "Psychopharmaka absetzen" ("Coming off Psychiatric Drugs"), provides many personal testimonies by individuals who have successfully withdrawn from psychotropic drugs. Kerstin Kempker, also from Berlin, published "Flucht in die Wirklichkeit" ("Escape into Reality"), an account of "The Berlin Runaway House", an innovative residence completely managed by survivors of psychiatry and staffed by at least 50% survivors, all of whom provide support to individuals choosing to withdraw from psychotropic drugs.

Two additional books, not authored by a user, ex-user or survivor of psychiatry, but rather by a psychiatrist from Maastricht, The Netherlands, have been accepted unanimously by the European user, ex-user and survivor of psychiatry movement. The author, Dr. Marius Romme, presents his research and findings in "Accepting Voices" and "Understanding Voices: Coping with Auditory Hallucinations and Confusing Realities".

Unfortunately, some of these books are not translated into English and therefore, the spread of their unique insights remains limited to their region.

Generally speaking, the issues faced by the European user, ex-user and survivor of psychiatry movement are similar to those in the USA. Issues like stigma, ECT, civil commitment, peer support, and advocacy issues surface as they do in the USA. Furthermore, Europeans are not as rigid and anchored into the physiological explanation of mental illness as we are in the USA. There may be some reasons for this. For example, in the eastern parts of Europe, there seems to be an Asian influence that explains life challenges in terms of fate, not medical diagnoses and treatments. An interesting example of this is in Turkey, where many people never seek psychiatric help because they feel there is nothing that can (or should) be done to alter their fate. Also, many people experiencing a mental illness visit their community spiritual healer, a hoja, to assist them. This cultural norm, though changing rapidly in western Turkey, removes physiology from the focal point.

Also, behavior psychology is deeply rooted in several parts of Europe. It was in Kiev, The Ukraine, where Dr. Pavlov conducted his behavioral conditioning experiments with dogs. And, in Vienna, Austria, Dr. Freud advanced his psycho-dynamic theories.

Additionally, the research by Dr. Marius Romme related to hearing voices, which will be presented in more detail later in this report, and the efforts of many European user, ex-user and survivor of psychiatry activists has led to the minimization of the medical model. This is not to imply that the medical-physiological model of mental illness is not moving toward the forefront of psychiatry in Europe. Rather, it explains that there is a broad range of perspectives present in Europe.

In some of the Eastern European countries where major political and economic challenges continue, members of the ENUSP board have been instrumental in supporting user, ex-user and survivor of psychiatry activists and self-help activities. For example, Gábor Gombos, a survivor of psychiatry activist in Budapest, Hungary, has shared his support and technical assistance to many users, ex-users and survivors of psychiatry in Eastern Europe. This individualized support has been important to the empowerment of users, ex-users and survivors of psychiatry in Eastern Europe.

Because I am limited in the time of my presentation, I will not be able to describe all of my on-site visits and observations. Instead, today I will discuss several programs I visited that were hosted by board members of the ENUSP.

Voice of Soul – Budapest, Hungary

Voice of Soul (VOS) is a self-help organization in Budapest that was founded and chaired by Gábor Gombos. I like this program because of the services it provides to users, ex-users and survivors of psychiatry. Because of Gábor's leadership, users, ex-users and survivors of psychiatry see VOS as a safe environment for self-help activities and other activities. VOS offers computer classes that help users, ex-users and survivors of psychiatry become licensed for work opportunities. And at a local government level, VOS has developed a strong relationship with city officials and this has resulted in several community based projects.

VOS maintains its integrity as a self-help organization while at the same time provides opportunities for members if they want to become involved in advocacy-related activities.

The Psychosis Seminar – Berlin, Germany

The Psychosis Seminar was established to bring users, family members, and professionals to together to discuss diverse perspectives in a constructive way. Taking into consideration that many users, ex-users and survivors of psychiatry, family members, and providers do not share the same theories and perspectives regarding mental illness, treatment, and recovery, the Psychosis Seminar was established so that everyone could share their perspectives in a formal and non-accusatorial manner.

There are now about 60 such Psychosis Seminars operating throughout Germany. The size of each seminar is designed to be big enough to maintain a sense of anonymity and small enough to maintain a degree of intimacy.

The founder of the Psychosis Seminar (also known as Trialogue Programs) is Dorothea Buck, a German woman who is an outspoken advocate against the psychiatric and medical abuses of the Nazis.

The Runaway House – Berlin

Based on a program initiated in the Netherlands, the Runaway House is a special home in a residential neighborhood that offers lodging, meals and emotional support to users, ex-users and survivors of psychiatry who have chosen to stop taking psychotropic drugs. This program is very unique worldwide and very dynamic. The staff of the Runaway House are at least 50% survivors of psychiatry and their daily work is very labor intensive. This is because of their concerted and continuous effort to establish trusting relationships with the residents. In many conventional psychiatric settings, medications are used to placate and suppress the anxieties and challenges of a "patient". However, in the Berlin Runaway House, personal interaction and unconditional support is the cornerstone of this program.

I like this program because it offers an alternative approach to users, ex-users and survivors of psychiatry who refuse to take psychiatric drugs. Without the Berlin Runaway House, users, ex-users and survivors of psychiatry who refuse to take psychotropic drugs in Berlin would have only two choices, hospitalization or homelessness. Instead, they have the Runaway House to visit, where they are met with understanding and support.

Marius Romme – Maastricht, The Netherlands

During my stay in Europe I interviewed Dr. Marius Romme from Maastricht, The Netherlands, a psychiatrist whose sensitivity and subsequent research with persons hearing voices had a dramatic impact on users, ex-users and survivors of psychiatry throughout Europe.

His research was initiated when one of his "voice hearing" patients informed him that all psychiatry had to offer were various diagnostic services and treatments, but nothing to resolve her problem. This criticism of psychiatry motivated Dr. Romme to conduct specialized research that resulted in specific methods "voice hearers" could employ and that would bring consistent relief to their challenge.

Romme's work is too comprehensive to detail in this presentation. However, he found that one of the main differences with "voice hearers" who function productively in society and those who are hospitalized, is that those functioning in society have learned to accept their condition of hearing voices. Rather than using one's energy to fight and suppress the voices, Romme suggests that accepting the condition and learning special coping mechanisms is a better user of one's energy.

One of many results of Romme's work is the proliferation of self- help organizations throughout Europe, to include one by the name of RESONANCE. Needless to say, Romme's work threatened many traditional psychiatric paradigms. But his conclusions remain embraced by European users, ex-users and survivors of psychiatry.

Conclusions:

Do not try to ignore voices, they only get stronger.
Do not try to do what the voices say. Be selective in what you listen to, like when other people talk with you and give you advice, you don't listen to everything they say.
Do other positive things to distract you from your voices and they will become weaker.
Psychotropic medicines do not necessarily resolve voices and for some the medicines cover up their own voice.
When people are passive and weak the voices are stronger.
Main message: Don't fight – cope.

Genetic Research in Iceland

I believe we should keep our eyes on the activities in Iceland, which could have major implications on users, ex-users and survivors of psychiatry worldwide.

For many years, Icelandic people have been tracking and documenting the histories of their family members in great detail. From this developed what we know of as "sagas", which are detailed accounts of a person's life. Also, for many years, blood samples and other human tissues were kept from deceased family members.

In recent years, as a greater understanding of DNA unfolded, genetic scientists became fascinated with the abundance of tissues and blood samples collected from Icelanders. And they believed that by combining this DNA data with the descriptive data contained in the detailed accounts (sagas) of Icelanders, their research would yield complete findings.

With the fervor to get their hands on the DNA samples, well-funded private genetic research firms have been setting up laboratories throughout Reykjavik and comprehensively lobbying politicians to further their cause. However, many advocacy groups believe that many ethical questions and issues are being ignored and overlooked.

An example of this is that these companies are promising to keep all data confidential by encrypting the data. But there is no legislation obligating these corporations to keep data confidential. As a result, politicians have more latitude in making decisions supportive of the corporation and not the research subjects.

The activities around this issue must be monitored closely over the next few years because how Iceland deals with this issue will provide helpful information for other countries faced with this issue in the future.

Conclusion

There are many programs that have a profound impact on users, ex-user and survivor of psychiatry throughout Europe. From advocacy organizations to clubhouses to social centers, the user, ex-user and survivor of psychiatry movement is alive throughout Europe.

I am grateful for the opportunity to get to know many of you during my visit. I believe that the European Network of (ex-) Users and Survivors of Psychiatry has been and will continue to be a catalyst for the advancement of the user, ex-user and survivor of psychiatry movement on the European continent. I look forward to working with all of you in the future.

Thank you for inviting me to address your congress.