Variety Instead of Stupidity: About the different positions
within the movement of (ex-) users and survivors of psychiatry
Translated by Pia Kempker
System survivors are more dissimilar than professionals
might prefer to think. One person's survival is another's persecution
Fighting psychiatric assault, discrimination and stigma seems
to work as an unifying element within the self-help movement of
(ex-) users and survivors of psychiatry. Forming groups and organisations,
in general it turns out that the variety of opinions about psychiatry
and its methods among (ex-) users and survivors of psychiatry
are not that great. It is amazing to realize that their experiences
of psychiatry and their opinions are rather similar. It is especially
easy to gather around a human and civil rights perspective. The
experiences of paternalism, stigmatisation and oppression within
the psychiatric system as well as in society as a whole are very
similar everywhere in the world, even if the forms these might
take are rather different (Lehmann & Jesperson, 2007, p. 367).
Coming together, to experience compassion with dehumanizing psychiatric
treatment is combating the feeling of isolation and being an ugly
and unworth mentally ill individuum. Often people with a psychiatric
history for the first time develop self-respect and openness in
a self-help group, which of course makes them vulnerable. Who
would expect harm in such a closed space of solidaric people with
so similar experiences and equal diagnoses like 'psychoses', 'depression',
But when it comes to activities beyond defence of human rights,
different political and personal views get more important. Against
the backdrop of past good experiences of solidarity and equal
diagnoses, differences tend to undermine cooperation. Equality
based on equal diagnoses turns out to be a phantom, a construct
like the nature of the psychiatric diagnosis itself. Even
though differences and fights happen everywhere in groups and
organisations (also in those from psychiatrists and psychologists),
in self-help groups of (ex-) users and survivors of psychiatry
they are more destructive. They pull the rug out from under those
people who just started to move without crutches. In his contribution
to the book Coming
off Psychiatric Drugs, David
Webb from Melbourne took a critical look at the dark side
of self-help groups:
During my time of struggle, one of the most annoying
things was all those people who believe that what had worked for
them could also work for me. The path to peace and freedom is
unique for each individual and very personal. (p. 165)
It seems more than overdue for the community of (ex-) users and
survivors of psychiatry itself to address experiences like this.
Until now, there has been no forum to discuss the dark side of
the self-help movement. Egocentrism is only one facet of the problem.
Reforming or fighting psychiatry?
Take or abolish psychiatric drugs? Reform or abolish psychiatry?
An insoluble contradiction? In the past I have delivered keynote
speeches and published papers, where I describe the different
trends within the movement of (ex-) users and survivors of psychiatry
and advocated a respectful exposition. I am convinced that the
problem is a universal one and still current. Moreover, a forum
to discuss ideological differences within the movement, fights
and insults is urgently missed. Wherever you address the dark
side of the movement, people agree and add their experiences.
But when you propose a public discussion, the answer is always
the same: this is not the right place. But where is it?
'We want a different psychiatry' is for example
in a flyer of the German
Organization of (ex-) Users and Survivors of Psychiatry; 'we
demand the development of efficient alternatives to the mentality
in nursing and supervising of conventional medical psychiatry'.
They are talking about 'cooperation as partners with equal rights',
and as one of the tasks of the union the 'calling in of the duty
of agreement for medical measures of treatment as for mentally
ill people' is mentioned. In the chapter, 'More human conditions
of life' 'less psychiatric drugs and more psychotherapies' are
asked for: depression and psychoses were not to be suppressed
by drugs but to be taken seriously in their meaning.
In 1995, the members of that German organisation where asked
for their opinion of psychiatry and its future. As the opinion
research poll about the improvement or introduction of quality
in psychiatric treatment has shown, the differences in how the
members imagine a different psychiatry were considerable.
There is no reason to assume that today the result would be different
in Germany or other countries. Some want a psychiatry without
psychiatrists, which means the abolition of psychiatry and establishment
of a non-psychiatric care system instead. Others want better psychiatrists,
more money for psychiatry so that more staff can be engaged, hoping
that pleasant and therapeutic talks, nowadays generally missed,
can be held. Some want delimitation, a completely non-psychiatrically
oriented self-help with securing of their civil rights and human
rights as protection against psychiatric encroachments. Others
want the development of a psychiatry that is determined by psychiatrists,
(ex-) users and survivors of psychiatry and relatives together.
Similar differences appear in the valuation of psychiatric drugs,
the most important treatment method in psychiatry: some people
take psychiatric drugs with the conviction of not being able to
live without them, whereas others decline them with the conviction
that psychiatric drugs are pure poison for the nerves.
These two principal conflicts always played a part in the past
and led to antagonism. Representatives of radical positions from
both sides did not become members of the organization of (ex-)
users and survivors of psychiatry, or they left it again with
the opinion that the organization was too antipsychiatric on the
one hand or too reformist and believing too much in psychiatry
on the other. What is in this controversy? Are the conflicts of
such a fundamental nature that further arguing is programmed,
that the danger of more and more frustrated members leaving organizations
What do (ex-) users and survivors of psychiatry want?
From my experience I know that many generally tend to wish to
enjoy their lives, to be left alone, to have contact with like-minded
people and to live tolerable lives. A change of psychiatry is
not on their agenda, either because they think psychiatry is o.k.
or because they are alone and do not see a chance for them.
For others there is generally an attitude of central importance
that can be described best as 'empowerment'. (Ex-) users and survivors
of psychiatry want to preserve or win back the control over their
own lives. It is the criterion that is brought by many (ex-) users
and survivors of psychiatry all over the world, when they characterize
alternative or emancipatory psychosocial institutions, no matter
if they are psychiatric institutions or self-help groups.
In the opinion research poll in 1995, the members of the organization
declared what a changed psychosocial area should look like. Over
100 members participated in the poll. In their statements, psychiatry
received an almost crushing refusal. Only ten per cent of those
answering stated that they found help for solving their problems
in psychiatry. Often (wo)man's dignity was injured. In spite of
being prescribed by law, there was no extensive information about
treatment risks. For being able to talk of a qualitatively acceptable
psychiatry, the following fundamental criteria have to be fulfilled:
Observance of the dignity of (wo)man, warmth and human contact,
individual company, a relationship full of confidence instead
of fear. There are many useless things in psychiatry: for many
(ex-) users and survivors of psychiatry the whole institution
together with the psychiatrists is useless. In general, the following
factors were found to be useless: violence, the use of psychiatric
drugs, coercive measures, electroshocks and fixation on diagnosis.
Medical (wo)men who believe that they know more about their patients
than they themselves, are useless. Alternatives are important
for giving options to choose from. Concerning the question what
these alternatives should be like, the following suggestions were
made: alternative drugs, e.g., homeopathic remedies, self-help,
runaway houses, alternatives according to Mosher and Laing, soft
rooms ā la Soteria (Peeck et al., 1995).
Abolition or reform: A conflict that divides?
In practice, this controversy about 'Reform or abolish psychiatry'
is there in theoretical and ideological discussions, in the kind
of mainstream or alternative institution that each single one
prefers. And in theoretical discussions the conflict 'Reform or
revolution: abolition of psychiatry' is important for getting
clarity of where oneself stands, where the others stand, to understand
where the differences are and what the others want, even if it
is not the same as oneself wants.
But 'Abolition of psychiatry and provide alternatives instead'
the one extreme will look ridiculous if the corresponding
positions do not relate to the interests of (ex-) users and survivors
of psychiatry, and 'reform attempts' will also fail if they are
only about improvement of psychiatry.
When we see all the demands, projects and hopes, the different
imaginations tending to 'reform' or to 'abolition and alternatives'
are always noticeable but why should a coexistence be impossible
as long as there is no fighting? And why not also reciprocal support?
How conflicts are to be solved was exemplarily shown in the controversial
discussion about the so-called 'treatment contract' and 'the psychiatric
will' in Germany. First it seemed as if the treatment agreement
as it is called now would stand in aggressive competition
to the psychiatric will. The treatment agreement is a document
signed by a user of psychiatry and psychiatrist where the user
agrees to treatments in a later situation where his or her decision
is not considered competent anymore. This form of advance directive
is developed for people who trust in psychiatry. The psychiatric
will is a document written and signed by a user or survivor of
psychiatry where he or she determines how he or she wants to be
treated or not treated in a later situation where his or her decision
is no longer considered as competent. This form of advance directive
is developed for people who mistrust psychiatry. Finally there
was a respectful discussion, taking the arguments of the opposite
side seriously, that now admits the (ex-) users and survivors
of psychiatry a fair decision to choose the kind of beforehand
instruction which they think is best in their situation. Some
trust in psychiatrists, others mistrust them, some feel dependant
on them, others feel offended by them. Which of us want to command
which feelings the individuals shall have?
To take or to decline psychiatric drugs?
The valuation of the prescription or taking of psychiatric drugs
is a very controversial topic. The taking of neuroleptics, antidepressants,
mood stabilizers and tranquilizers can lead to apathy, to emotional
plate lining, depression, suicidality, paradox phases of excitement
or confusion, intellectual disorders, lacks of creativity, concentration
or memory problems, status epilepticus, weakening of the immune
system, hormone or sexual disorders, chromosome and pregnancy
damages, damage to the blood, disorders in the regulation of body
temperature, heart problems, damage to liver and kidney, skin
and eyes, Parkinsonism, hyperkinesia, muscle cramps, movement
stereotypy and much more. On the other hand many (ex-) users and
survivors of psychiatry suggest that they cannot be without psychiatric
drugs in their situation, or that drugs shorten a mental crisis
and so avoid being brought into psychiatry, where would probably
be given psychiatric drugs for a long time.
There are very often irritations when people who decline psychiatric
drugs meet those who take them. In fact it is the decision of
each individual person if he or she wants to take these substances,
for whatever reason. Indeed, there are arguments against the free
reasoning or a liberal basic attitude:
- The organisations of (ex-) users and survivors of psychiatry
do not participate in drug-monitoring, and single psychiatric
patients are normally not informed about the existing, the possible
and the not excluded risks. They do not know that some substances
were taken off the market in some countries, but are available
without restrictions in other countries: e.g. penfluridol (Semap)
because it can lead to cancer, remoxipride (Roxiam) because
of blood damages, triazolam (Halcion) because of amnesia and
- The burden of proof in cases of compensation demands is only
borne by the (ex-) users and survivors of psychiatry. The
financially assured producers do not have to prove that
damage is not caused by their risky substances, but the
generally poor damaged have to prove in a complicated
proceeding that damage is only to be attributed to the substance
given to them.
- The dispensing of psychiatric drugs to women of child bearing
age happens very often without considering possible pregnancies
or dangers to the foetus.
- More and more defenceless old people get these substances
to manage nursing shortages. More and more children without
the possibility to choose get psychiatric drugs to make them
match the not-very-fond-of-children world better via chemicals.
More and more women get psychiatric drugs to neutralize their
disturbing reactions to patriarchal situations of life chemically.
More and more people who got into conflict with the law get
psychiatric drugs to stay calm in their inhuman prisons or to
break their resistance when deporting them.
- Because of inter- and intra-individual differences in the
effects, it is impossible to predict with assurance how a certain
dose of a preparation will work. All known damage with psychiatric
drugs come principally independent of the dose and after a relatively
short time, sometimes after taking a small dose once.
- More and more people get combinations of different effects
through incompatible psychiatric drugs.
- All psychiatric drugs produce bodily dependence, and the prescribers
deny this effect of the substances (except tranquilizers), and
conceal the phenomenon of withdrawal or redefine rebound phenomena,
supersensitive reactions of the receptors as well as possibly
irreversible damage caused by psychiatric drugs as symptom changes.
- There are nearly no statutory institutions necessary to support
problems with withdrawing neuroleptics, antidepressants and
- All the time, there are attempts by psychiatric unions and
Big Pharma to enforce especially the life-long taking of psychiatric
drugs, the perfecting of community-psychiatric supervising systems
and new forms of dispense.
- There is neither the right to drug-free help or user-controlled
institutions nor non-psychiatric crisis institutions or financially
well-supported self-help groups.
- None of the psychiatric drugs mentioned solve social problems.
Generally they aggravate solving these problems. After withdrawing
these substances the conditions for solving the problems which
led to the use of psychiatric drugs are normally even worse.
For all these reasons, the use of psychiatric drugs is to be
judged with scepticism. Nevertheless the decisions of the users
about taking psychiatric drugs are to be respected: especially
if they help to overcome escapeless conflict situations, which
would end in psychiatry, with a very short, very low-dosed, very
low burden of risks by reflected and self-determinate taking of
psychiatric drugs. Also to be respected is the decision of users
to take psychiatric drugs, no matter for what reason, in what
time period and with which grade of content of information about
the risks. Special sympathy and solidarity are due to the (ex-)
users and survivors of psychiatry who are forced by nerve damage
caused by psychiatry or social conflict situations to take psychiatric
drugs to be able to live in any way. Particularly people affected
by addiction make clear that user-controlled institutions for
crisis cases are needed, so that the first taking of psychiatric
drugs can be prevented.
The Vejle Declaration
To promote a respectful co-operation in self-help organisations
and to encourage people to resist dogmatism, hierarchies and claims
to power from wiseacres, at the Joined Congress 'Networking
for our Human Rights and Dignity', run by the European Network
of (ex-) Users and Survivors of Psychiatry (ENUSP) and the World
Network of Users and Survivors of Psychiatry (WNUSP) in July 2004
in Denmark, the 'Vejle
Declaration' was developed and approved by the General Assemblies
of ENUSP & WNUSP. In all organisations (ex-) users and survivors
build a constructive, welcoming, friendly, attractive atmosphere,
respectful of all the opinions of others, not trying to decide
what is good for them and support each other in developing
our individual and creative capacities
underline the importance of transparency, good governance
and responsibility in financial matters
integrate minorities in a proactive way and combat any discrimination,
whether it is based on origin, gender, age, disability, economy,
religious or sexual orientation
be patient to each other, try to see the whole person behind
the label and emotional and physical problems and not to judge
be careful in the election of representatives and consider
their experiences and prevent ourselves and our colleagues
from burning out and subsequently leave the organisation
appreciate the work of all people who honestly try to improve
psychosocial treatment as well as those who work to establish
alternatives to psychiatry and resist any unilateral approach
to the understanding of mental health problems
respect the work of volunteers and recognize the need for
paid jobs as well as looking for allies because we
face a vast and complex task
demand that psychosocial services are made for the users/clients/survivors/people
in recovery, under our influence and with respect to our equal
rights as citizens in a democratic society.
Necessary reflection of the differences
Being a member of the movement of (ex-) users and survivors of
psychiatry, I claim to speak not only for myself, but for a large
community and move from 'I' to 'we': We have to be aware of the
stress that exists between the individual needs of the (ex-) users
and survivors of psychiatry, who have a right to define their
conflicts, needs and risk readiness, on the one hand the danger
that comes from the power demand of psychiatry (both biological
psychiatry and community psychiatry), politicians without responsibility
and the profit-oriented drug industry.
This stress can only be mitigated if the consumers of psychiatric
drugs as well as the people who are forced to take these substances
have guaranteed human rights not depending on the diagnosis, simple
access to financial compensation in case of needs, a right to
help without psychiatric drugs and an alternative offer of non-psychiatric
If we want to change something and if we want understanding by
psychiatrists, therapists, politicians or whoever, we can only
demand this understanding authentically if we try to understand
ourselves. How do all the structures that we want to build up
help the solidarity amongst each other if we saw at their basic
pillar day and night? The fact that we were in a psychiatric institution,
have a psychiatric stamp, may be something we have in common,
but we are too different in origins, beliefs, political interests
and personal preferences to let the psychiatric community
a community primarily defined by the outside solve all
the problems of being together. Moreover, if we want respect,
no matter from whom, we have to respect ourselves and treat different-thinking
persons with respect, even if we do not share or understand their
opinion in some cases. As well as demanding choice for help, we
have to concede to each other the right to wish and work on the
form of changed psychiatry or alternative that we choose to be
the most reasonable one for us. If the basis of our ambitions
is a change in the direction of more humanity, sensible alternatives,
in the direction of equal rights and better life conditions: why
should different strengths lead to unbridgeable differences? Only
together can we carry through our demands.
Lehmann, P. & Jesperson, M. (2007). Self-help, difference
in opinion and user control in the age of the internet. In
Stastny & P. Lehmann (eds.), Alternatives Beyond Psychiatry
(pp. 366-380). Berlin, Eugene, Shrewsbury: Peter Lehmann Publishing.
G., von Seckendorff, C. & Heinecke, P. (1995). Ergebnis
der Umfrage unter den Mitgliedern des Bundesverbandes Psychiatrieerfahrener
zur Qualität der psychiatrischen Versorgung. Sozialpsychiatrische
Informationen, 25(4), 30-34.
Webb, D. (2004). 'Please don't die'. In P.
Lehmann (ed.), Coming
Off Psychiatric Drugs: Successful withdrawal from neuroleptics,
antidepressants, lithium, carbamazepine and tranquilizers
(pp. 164-173). Berlin, Eugene, Shrewsbury: Peter Lehmann Publishing.