Special Report: A Personal Perspective

Overview of the European Consumer Movement

Consumer advocacy is taking place in varying degrees in every country on the European continent. The small Faroe Islands, isolated in the Norwegian Sea, have the largest number of consumer advocacy organizations per capita in Europe. Even in the war-torn Balkans, consumer advocates stay informed via the internet. In Crakow, Poland and Ljubiana, Slovenia, consumer-managed drop-in centers, cafes, clubhouses, and crisis services are supported by the Hamlet Trust, a London-based foundation that supports consumer initiatives. In western Europe and Scandinavia, national advocacy organizations are funded by the federal government. From London to Kiev, there are numerous consumer-published newsletters, including one, published by a Finnish consumer advocacy organization, that has a national circulation of 40,000 copies.

This report will provide an overview of the robust European advocacy movement by first focusing on the role of a leading advocacy organization, the European Network of (Ex-) Users and Survivors of Psychiatry (ENUSP), and by discussing some of the cultural and historic particularities of consumer advocacy in Europe. Following this overview, six particularly innovative consumer initiatives in Europe will be further explored.

The example of ENUSP provides one of the best illustrations of the challenges being faced and the solutions being developed by Europe’s large and diverse consumer movement. ENUSP, a consumer-managed and democratic organization, serves five different regions on the continent:

1. The Nordic countries, including Iceland, the Faroe Islands, Norway, Sweden, Denmark, Finland, and the Baltic States.
2. The German-speaking countries including Germany, Austria, Switzerland, Luxembourg and Belgium.
3. The United Kingdom, the Netherlands, and Ireland.
4. The Mediterranean countries including Italy, Spain, France, Portugal, Greece and Slovenia.
5. Eastern Europe, including the Balkans.

Although ENUSP members do not share the same history, culture, or language, ENUSP seeks to be fully representational of these five regions, and the organization’s bylaws require that members from all regions serve on the Board of Directors.

This formalized attempt to assure full representation requires constant effort and patience. Indeed, when the board convenes or when an international meeting of ENUSP consumers takes place, there can sometimes be an awkward interplay of diverse cultures. For example, participants may experience misunderstandings because they each bring to the meeting their unique cultural perspective and their unique language, as well as their unique translation of English, the language commonly used in their international meetings. These same differences create barriers when participants try to develop an important document, where clarity is imperative.

Consequently, European consumer advocates must exercise a high degree of patience and understanding vis-a-vis their peers. Perhaps because of the skills developed to counter these cultural and linguistic barriers, a shared determination to speak with a unified voice within ENUSP prevails. This determination is echoed throughout the broader European advocacy movement.

To further complicate the European advocacy movement’s efforts, consumers must navigate through the lingering fog of World War II. The memories and implications of World War II continue to influence current-day social, economic, and political discussions, and discussions related to psychiatry and consumer advocacy. In Europe, comparisons of psychiatric experiences to wartime atrocities are commonplace and accepted. Nonetheless, ENUSP has been criticized for containing the word “survivors” in its name. The European Union, the new organization of European countries, maintains that the word “survivor” is reserved for the survivors of the Holocaust and should not be used in a psychiatric context.

The European advocacy movement emphasizes literature, art, drama, and dance in its activities. In particular, European consumer advocates advance their theories by publishing books, most of which, unfortunately, have not yet been translated into English. For example, in Malmo, Mr. Goran Wassby published “The Psychiatric Clinic,” a dramatic and extraordinarily detailed account of only one day in a local state hospital, and Mr. Gosta Granqvist published “From Schizophrenia to a Better Life,” a book containing personal insights into schizophrenia and suggestions on how to improve one’s quality of life.

Mr. Peter Lehman, a resident of Berlin, and former chairperson of the ENUSP, has completed two books on the effects of psychotropic medicines. His most recent publication, “Psychopharmaka absetzen” presents personal testimonies of individuals withdrawing from psychotropic drugs. Ms. Kerstin Kempker, also from Berlin, published “Flucht in die Wirklichekeit,” an account of the Berlin Runaway House, an innovative consumer-staffed residence for individuals who have chosen to withdraw from psychotropic medications. Two more books, authored by Dr. Marius Romme, a psychiatrist from Maastricht, the Netherlands, are also highly valued by the European consumer movement: “Accepting Voices” and “Understanding Voices: Coping with Auditory Hallucinations and Confusing Realities.”

European consumer advocates also face similar issues to American advocates including stigma, and use of ECT, medications, and involuntary commitment. However, there is a fundamental difference in the way professionals, family members, and consumers debate these sensitive topics. For example, in the United States, if consumers advocate for the abolition of involuntary commitment, if they blame their mental illness on environmental forces, or if they present psychotropic medications in a negative light, they may run the risk of being shut out by mainstream advocates. In Europe, consumer advocates and mental health professionals value such a challenging debate. Because psychodynamic theory, traditional psychoanalysis, and behavioral psychology have deep roots in Europe, consumer advocates experience less resistance when challenging physiological explanations of mental illness.

Asian influences in Europe, particularly in eastern Europe, have led to more vigorous challenging of physiological explanations of mental illness. Because Asian culture explains human struggle in the context of fate, many people, feeling there is nothing that can or should be done to alter their fate, do not seek professional psychiatric care. In Turkey, for example, many people experiencing a mental illness ignore psychiatry and instead visit their community spiritual healer, a hoja. This cultural norm, though changing rapidly, has kept issues regarding physiology out of the focal point of mental health. This is not to say that the physiological model of mental illness remains entirely in the background of European psychiatry. Rather, historic and cultural differences allow for a broad range of perspectives. In Europe, advocates can express alternative perspectives without being scorned either by individuals or by groups who are locked into mainstream theory.

Recently, consumer advocacy has started to take root in the post totalitarian countries of Eastern Europe and the former Soviet Union. Previously, the practice of consumer advocacy, especially directed at government-operated services, was prohibited under communism, and this oppression applied both to consumers and physicians. Therefore, since the collapse of communism, a unique process of empowerment is unfolding for both consumers and professionals. At the same time, the pharmaceutical companies in eastern Europe are also stepping up their efforts to influence psychiatrists regarding medication choices and to fund research by psychiatrists. Economic and social shifts are therefore occurring that tilt the perception of the balance of power toward psychiatrists and that affect consumers' perceptions of the psychiatric community.

Fortunately, members of the ENUSP board, as well as many other individuals and organizations, have been instrumental in supporting consumers in these former communist countries. For example, Mr. Gombos Gabor, a consumer activist in Budapest, Hungary, and also a longtime board member and recently elected Chairperson of ENUSP, has provided technical assistance to his peers in eastern Europe. The Geneva Initiative on Psychiatry Reform, a Dutch-based advocacy organization, has also been instrumental in encouraging the involvement and influence of consumers in Eastern Europe, Russia, and the New Independent States.

To summarize, despite cultural, historic, and language barriers, the European consumer advocacy movement is flourishing. Indeed, it even seems that the need to cooperate in reaching across these barriers has fostered an atmosphere of tolerance and a willingness to dialogue on subjects sometimes avoided in the American consumer movement. It would be impossible to describe all of the many organizations of the European consumer movement and their multifold activities in this one report. Therefore, examples of six current consumer-run initiatives in Europe follow.