Stop Exclusion, Dare to Share!
Commentary of a "Mental Health Advocate" at the
World Health Day 2001
Mental Health: "Stop Exclusion Dare to care", WHO Headquarters,
Geneva, Switzerland. April 6, 2001
In 1977, in a state of
cumulated problems in my life (partnership, work, final examination in my studies),
I went crazy. Afterwards, when there was the time to discuss this situation with
my friends, they all said that they might have gone crazy, too, if they had been
in the same situation.
Psychiatric workers who treated me in the madhouse
were not my friends. But they were medical professionals, and so they gave me
a lot of diagnoses, wrapped up my clothes, tied me down to the bed, put me in
restraints and gave me a lot of neuroleptic drugs. Soon I was told to be an incurable
schizophrenic, ready for the ward for chronic mentally ill. The drugs had made
me fat, impotent, suffering from Parkinson disease, made me apathetic and suicidal,
and I had developed a drug-caused tardive dyskinesia, in the form which is known
as rabbit-syndrome. Who cared?
When I came free again, but with the prescription
of depot-neuroleptics, I had the decision to live my life as a zombie or rather
to kill myself immediately. Never before I had the idea to kill myself. I decided
to stop taking the neuroleptics. Within 4 weeks I got healthy again only
my liver did not recover completely from the treatment.
Now I will not lament
that I had not received enough care, when I was in the madhouse. The problem was,
that I got too much of this kind of treatment that is called psychiatric care.
Who really cares about all these people suffering from the effects of the treatment?
Who cares, for example, that so many people kill themselves under the influence
of the treatment with these psychotropic drugs? This should really be an issue
for WHO: Suicide is one of the most frequent death-causes among people labelled
as schizophrenics, all people with this diagnosis are receiving neuroleptics from
the beginning. Since the beginning of the fifties, when neuroleptics have been
introduced to the market, suicide rates of people treated with neuroleptics grew
dramatically. A lot of epidemiological studies have proved this catastrophe.
of stories could be told, day after day, year after year. Who does not like to
listen to personal stories? But rather than repeating personal stories all the
time, let us change the situation, let us go forward from care to share. Share
your power and your money with the users and survivors of psychiatry. This would
make a difference.
"Developing innovative and comprehensive, explicit
mental health policies in consultation with all stakeholders, including users
and carers, and respecting NGO and citizen contributions". This is one of
the nine key principles, which were identified as a central common goal and strategy
to improve psychiatric care at the congress "Balancing mental health promotion
and mental health care: a joint World Health Organization / European Commission
meeting" in Brussels in April 22-24, 1999. Other key principles, which are
important not only in Europe, are 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. It would make me happy to see these
principles confirmed and developed at every meeting of the World Health Organisation.
Of course, if we have human rights like other human beings, medical professionals
have to give up some power and influence; they have to share them with us, money
We, who disagree with the conventional concept of mental illness and
disagree with the need for synthetic psychoactive drugs especially when
prescribed for long-term daily use or even for life do not close our eyes
or deny the real problems many people experience. My point is, and I share this
view with Karl Bach Jensen, member of the interim committee of the World Network
of Users and Survivors of Psychiatry (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.
For example alternative pharmacy knows a lot about herbs and homeopathic medicine
which can help your body and mind relax and regain its balance. There might not
be that much profit in these things, but it is the future.
In this field
ex-users/survivors can play an important role as staff-members and consultants,
having the knowledge about what helped them. Such services linked with a positive
sub-cultural identity and dignity can be provided by the public or with public
financial support by the user/survivor movement itself giving people the space
to meet and create their own lives.
If people are locked up to save their
life or to prevent them from doing serious damage to others, nobody should have
the right to force upon them any kind of treatment. As a defence towards compulsory
treatment psychiatric wills or advanced directives telling which kind of
treatment a person wants or doesn't want if it comes to involuntary commitment
should be legally adopted by all states and nations.
systems and non-central services to meet the needs of people experiencing mental
health problems would minimise and in the long run make the use of synthetic and
toxic psychiatric drugs needless. Until the final abolition of these drugs a lot
of people need help and support to withdraw from the drugs.
World Health Organisation of the key principles of the Brussels Conference, I
ask to support the resistance of the European Network of Users and Survivors of
Psychiatry and WNUSP against the "White Paper on the protection of the human
rights and dignity of people suffering from mental disorder, especially those
placed as involuntary patients". The working group of the Steering Committee
wrote this Paper on Bioethics and serves as a basis for discussion to lay down
guidelines, which should be incorporated into new Legislation from the European
Council. If accepted by the European Council, it would encourage psychiatrists
to administer their compulsory treatment within the madhouse and outside, in the
community. It would encourage administering compulsory electroshocks, to allow
commitment without a decision of judges, even to allow compulsory sterilisation.
I want to encourage you to share your influence to protect our human rights, as
far as they exist at all.
And I want to encourage you to care for the participation
of the World Network of Users and Survivors of Psychiatry. This democratic organisation,
that has been financially supported by the International Disability Foundation
in 2000, will be formally founded in July 2001 in Vancouver. It is the only NGO
representing users and survivors of psychiatry worldwide. By the way: When I was
invited to the meeting in Geneva, I had to sign a paper that I, as an advisor
to the WHO, did not receive money form the tobacco industry. Why not developing
a paper to sign that people who received money from the drug industries
for example family organisations or some psychiatrists cannot be advisors
of the WHO at the same time?
When you discuss human rights again, representatives
of WNUSP would be glad to be invited. In this world-organisation there is a huge
treasure of experience and knowledge.
Finishing with a good example of sharing
sharing money is the money, which the German Minister for Health
gave our German organisation to develop a website for the Internet. It is just
an example, not the one-fits-for-all recipe to solve all problems. In their politics
of social inclusion the German government gave the money to help our organisation
to participate in the developing technical life. Free internet-access in psychiatric
institutions would allow the inmates to share their experiences with the world
outside their friends, parents, children, other interested people.
may be a look into the future. At present, you, the representatives of WHO, can
at least have quick contact to the independent organisations of users and survivors