|Paper for the Symposium
"Self and mutual help of persons with psychotic experience:
An alternative approach on the issue of life quality in a society",
organized by Anna Emmanouelidou within the 1st
International Conference-Quality of Life and Psychology,
run by the Psychological Society of Northern Greece at the Aristotle
University of Thessaloniki, School of Psychology, 3-5 December
Published in Greek translation in: Tetradia Psychiatrikis,
No. 90 (April-May-June 2005), pp. 18-25
in Turkish translation
The Political Dimension of the Self-help Movement of People
with Psychotic Experiences
Abstract: In this paper will be presented the development
of the self-help movement of people with psychotic experience in
Europe and the situation today. The emphasis will be given to the
demands of this movement how the psychosocial culture should be
changed to be able to deliver appropriate support. The mental health
service user/survivor experience and perspective should be represented
at all stages in the training of health care professionals, right
from the start of their professional career. This will help professionals
to become more familiar with the user/survivor perspective, that
is in definition different from their own. Professionals should
learn and be allowed to: take responsibility to challenge and expose
discrimination and harassment faced by people who experience mental
distress, support diversity, value the perspectives of (ex-)users
and survivors of psychiatry, see the whole person rather than the
diagnostic label and reduce the great distance with which the professionals
currently approach their patients.
The history of the European Network of (ex-)Users and Survivors
of Psychiatry (ENUSP)
ENUSP is an initiative to give users and survivors of psychiatric
services a means to communicate, to exchange opinions, views and
experiences in order to support each other in the personal, political
and social struggle against expulsion, injustice and stigma in our
respective countries and on a European level.
By the way: The term "user of psychiatry" refers to people
who have mainly experienced psychiatric treatment as helpful. The
term "survi≠vor of psychiatry" in turn refers to those
who have mainly experienced psychiat≠ric treat≠ment as being a danger
to their health. These definitions are often misunderstood: to "survive
psychiatry" does not mean that psychiatrists are being accused
of trying to intentionally kill peo≠ple. Of course in the past,
not many decades ago, psychiatrists killed hundreds of thousands
during the nazi area, when they had the possibilities to act without
any limitation. "Surviving psychiatry" today means that
diagnoses such as "schizophrenia" or "psy≠chosis"
very often have a depressing and stigmatising effect, leading to
resig≠nation and chronic hospitalisation. And it means that drug-effects
such as neu≠roleptic malig≠nant syndrome or tardive dyskinesia or
dystonic or epileptic attacks can be a dan≠ger to health and life,
which have to be survived.
Within our Network we do not differ people with different diagnoses
like psychosis, schizophrenia, mania, depression and so on. There
are people which are not convinced, that the psychiatric diagnostical
system is a scientific one, for them the psychiatric system is more
The history of the Network goes back to 1990 when the initiative
was taken in the Netherlands to form a network of associations of
(former) psychiatric patients from various European countries. In
the past the Network has organised five European conferences. In
Vejle, Denmark, this year at a joined conference with the World
Network of Users and Survivors of Psychiatry (WNUSP) there were
200 delegates from 50 countries world-wide, Greece included. You
can read the report in the internet on www.peter-lehmann-publishing.com/articles/enusp/vejle-index.htm.
Aims and objectives
The European Network is against any unilateral approach to, and
stigmatisation of mental and emotional distress, madness, human
suffering and unconventional behaviour. The Network should support
users'/survivors' autonomy and responsibility in making their own
decisions, that is, sellf-determination. In order to implement this
principle, priority has been given to the following areas:
Act against any kind of discrimination in society (both inside
and outside the mental health system) of people who have been
subject to the psychiatric system;
Support development of user/survivor groups throughout Europe
(with a particular emphasis on those countries where there are
no existing organisations);
Create and support alternatives to the psychiatric system and
collect and share information on the existing ones;
Influence and try to change present treatment in psychiatry.
There the Network goes along with the European Commission and the
World Health Organization (WHO). They statedat least on paperthat
"Developing innovative and comprehensive, explicit mental health
policies in consultation with all stakeholders, including users
and carers, and respecting NGO and citizen contributions" should
be a key principle and central common goal and strategy to improve
psychiatric care. This was decided at the Consensus Conference "Balancing
mental health promotion and mental health care: a joint WHO / European
Commission meeting" in Brussels in April 1999 (www.peter-lehmann-publishing.com/articles/others/consensus.htm).
Other key principles, which are also important, were the development
of new non-stigmatising and self-help approaches and the development
of mental health legislation based on human rights, emphasising
freedom of choice.
The reality is far away of any positive involvement of users and
survivors of psychiatry in decision-making processes concerning
topics of their fundamental interest. And speaking about mainstream
psychiatric treatment: There is no involvement in any form of decision
making, either in licensing psychiatric drugs or monitoring, or
in individual decision making. Complete and understandable information,
the basis for meaningful involvement, does not exist. Often psychiatric
drugs are administered in a violent way or through bullying and
threat. So-called psychiatric patients are seen only as cases in
a double meaning: as treatment-objects, and as cases in the sense
of boxes, filled with ill genes and disturbed transmitters, with
a brain in the head functioning like a chemical laboratory, which
regulates the body and mind like a mechanical apparatus, which is
out of control. Currently the main involvement of users of psychiatry
is opening the mouth and swallowing administered drugs or presenting
the buttocks to receive an injection.
Empowerment is the key word that best shows the central interests
of users and survivors of psychiatry. "Empowerment", a
special term coming from USA, can be understood as "self-authorisation".
Users and survivors of psychiatry should have or regain the authority
over their own life, get access to information and money and speak
with their own voice. Empowerment is the basis of preven≠tion of
mental disorders and promotion of mental health.
Many of us disagree with the conventional concept of mental illness
and disagree with the need for synthetic psychoactive drugsespecially
when prescribed for long-term daily use or even for life. But we
do not close our eyes or deny the real problems many people experience.
I belong to those who disagree with the psychiatric system incl.
its diagnostic system. My point is, and I share this view with Karl
Bach Jensen, chair of WNUSP, that people should not be locked up
and left alone when they go crazy or out of their mind. A fundamental
characteristic of necessary alternative mental health services would
be to help people to cope with their problems by use of mutual learning
processes, peer support, advocacy, alternative medicine, proper
nutrition, natural healing, spiritual practice, etc.
In the past, the Network participated in some European antidiscrimination
programs and made proposals how to improve the situation of people
with psychosocial disabilities, how users and survivors of psychiatry
are often called. The last program, called "the action project
ĎHarassment and discrimination faced by people with psycho-social
disability in health servicesí", was organised in the framework
of the ECís Community Action Programme to combat discrimination
2001-2006. The overall aim was to raise awareness about the discrimination
faced by people with mental health problems in health care services
and to promote strategies to combat it (www.peter-lehmann-publishing.com/articles/enusp/recommendations.htm).
The recommendations were based on the opinions of the national
partners and the Network, and inspired by the results of the focus
groups that were held during the first year with users and survivors
of psychiatry and health professionals.
Outcome of the studies was that every day people affected by mental
health problems, as well as carers and relatives, face harassment
and discrimination in diverse areas of their lives. This reduces
the possibility of recovery and integration in society.
Therefore, before summarising possible measures, emphasis should
be put on the importance of the participation of users and survivors
of psychiatry in the formulation and implementation of these measures.
It was recommended, that the starting point for tackling harassment
and discrimination is their participation in the fight against this
discrimination at various levels. The knowledge and expertise, with
which they can contribute, is unique and of an enormous value. This
is why measures that address discrimination and harassment must
be elaborated by those who suffer from this situation as well as
by so-called experts and professionals. The motto "nothing
about us without us" of the 2003 European Year of People with
disabilities must become practice.
The project participants suggested the development of strategies
to change attitudes and the behaviour of the general public and
particularly of (mental) health workers. To reduce or eliminate
discrimination and harassment, an explicit formulation of 'good
practices' or care standards and laws on the equality of treatment
should be developed and linked with the installation of boards of
Adequate funding, organisational involvement and support of policy
makers were seen a pre-requisite for the realisation of these recommendations.
First topic in detail:
PROMOTION OF THE MOVEMENT OF USERS AND SURVIVORS OF PSYCHIATRY
The movement of users and survivors of psychiatry should be promoted.
Effective participation of trained users and survivors is essential
for the implementation and development of quality standards and
Funding and support should be invested in:
free training programs for users and survivors of psychiatry
so they can protect themselves from discrimination, become user/survivor-workers
employed at all levels and become trainers themselves in programs
to combat harassment and discrimination.
the effective representation of users and survivors of psychiatry
or user/survivor-workers in crisis centres, counselling centres,
public relations work, research projects, congresses, networking
and international exchange.
the support of initiatives of peer coaching, self-help centres
and meeting places.
SENSITISATION AND TRAINING OF SOCIAL AND HEALTH PROFESSIONALS
Discrimination and harassment experienced in the health field is
especially important not only because social and health professionals
are directly involved in the recovery of the people with a mental
health problem and their carers, but also because in many cases
this discrimination passes unnoticed or unchallenged.
The mental health user/survivor-experience and -perspective should
be represented at all stages in the training of health care professionals,
right from the start of their professional career. This will help
professionals to become more familiar with the user/survivor-perspective.
LEGISLATION ON DISCRIMINATION AND BOARDS OF APPEAL
Laws on equality of treatment should be adopted and funds provided
so that these laws can be put into practice.
For example the legal protection of advance directives, or
the introduction of a suicide register.
There should be boards of appeal that receive the authority
and structural guaranteed possibilities to sanction institutions
and to influence decision-makers.
It would be desirable that the controlling is by users and survivors
of psychiatry. The possibility to ask for professional advice when
needed should be there, the financial resources for such advice
The current situation: I am very sad to tell you that the European
Commission decided in 2004 to go on with his policy of rejection
ENUSPís application to funds from antidiscrimination-programs, on
the grounds that ENUSP is an organisation with few income, that
means, not rich enough to get supported. The decision was done against
our application within an program called "anti-discrimination
programme". Now an organisation of professionals receives the
money for organisatorical supportmoney, that was foreseen
only for organisations of people with psychosocial dissabities themselves
or with a meaningful involvement in decision making bodies.
Self-help, help to self-help and promotion of self-help
Self-help, help to self-help and promotion of self-help are of
fundamental interest for users and survivors of psychiatry. There
will never ever be any progress in healing, recovering, treatment,
personal development, prevention and so on without the enhancement
of our self-help resources. This is the message of the organised
users and survivors of psychiatry all over the world. Self-help
is the fundament of self-determined reflection of so-called symptoms
of mental illnesses. This is not a contradiction to professional
support, it is just the other side of the medal. How can professional
support in the mental health system be effective, when activating
self-help resources is not the result for the individualsí starting
point to take responsibility for the own life, especially after
a psychiatric crisis or coming off psychiatric drugs?
About the half of all psychiatric users decide not to take the
prescribed drugs or to withdraw, like people with non-psychiatric
diagnoses do also. Because in general professionals never speak
about possibilities to come off psychiatric drugs, I take this chance
here to speak about this important topic.
Gerda Wozart from Germany, one of the authors of the book "Coming
off psychiatric drugs" ( please find more information on www.peter-lehmann-publishing.com/withdraw.htm)
encourages other so-called psychiatric patients: "We are on
our own, called upon to live in a responsible way. We are not only
sentenced by others, muzzled by others. We always have more forces
(and self-helping forces, too) available than we might have thought
in dark days."
Some authors of "Coming off psychiatric drugs" regard
it as a fundamental condition to notice their own (co-)responsibility
for their lives, their problem-burdened past and their responsibility
for their future. Carola Bock from Germany says self-critically:
"Today I know that I am partly to blame for the states of crisis
because I acted wrong and was no angel at all. I often tried to
solve my problems in a wrong way, too top-heavy, and I had not collected
enough experience of life either." What better place for such
an insight is there beside a self-help organisation?
As long as they make an open, non-invasive interchange of personal
problems possible, self-help groups build the scope for mutual advice
and for the spread of information about possible damages caused
by psychiatric drugs and problems with coming off, as Nada Rath,
born in Yugoslavia, reports: "Most important were the conversations
with users and survivors of psychiatry who had comparable experiences
and a similar attitude towards the world."
For Una Parker from England co-counselling means the end of the
danger of psychiatric drugs and electroshocks again: "It has
made a very great difference to me, and I think that the support
I have had from regular co-counselling sessions not only kept me
out of the psychiatric system but also helped me be much more effective
in my life."
To support the involvement of users and survivors of psychiatry,
and to support the efforts to create self-help-organisations have
to go parallelly with financial measures, often the only measures
which work. Self-help is the basis of personal development and recovery,
and of political involvement of users and survivors of psychiatry.
So financial contributions to psychiatric institutions, organisations
and congresses should always be made dependent on a meaningful participation
of users and sur≠vi≠vors of psychiatry, there should always be a
percentage for funding self-help and direct representation of users
and sur≠vi≠vors of psychiatry.
At first glance this proposal may seem expensive and rich of conflicts.
However, only help to self-help and empowerment can be the fundament
of a modern psychosocial system. On this fundament appropriate supportthat
means, psychosocial support targeting the real needs of people in
emotional distresscan be developed. To a democratic society
belongs a democratical mental health system. In such a democratical
system the perspectives, wishes and treasure of experience of users
and survivors of psychiatry have to be valuated; the people themselves
have to be integrated in all aspects of decision making and education
within the mental health system. On the middle and long term, empowering
the people to enhance their self-help ressources will save a lot
of money of the society, and it will make your work more effective
and more senseful.
The full involvement of users and survivors of psychiatry and carers
organisations in the society is an indispensable element. Only on
this basis people with psychiatric problems and their relatives
can enjoy the status they deserve as citizens with full rights.
by Peter Lehmann 2004