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| https://www.youtube.com/watch?v=jvfqhaoncR4 |
From 13 to 15 November 2016, I participated in the Empowerment
Seminar of the European Network of Users, Ex-users and Survivors of
Psychiatry (ENUSP, http://www.enusp.org
), which took place in Berlin, Germany. This event was supported by
funding under the European Commission Rights, Equality and Citizenship
Programme (DG Justice Programme 2014-2020), and co-enabled by Mental
Health Europe (MHE, http://www.mhe-sme.org/ ).
I left Eindhoven on Saturday night 12 November and had a long travel
over night with busses and trains that didn’t connect very well, but I
reached Schiphol Airport safe and sound. After some more hours of
waiting, my flight to Berlin departed at 10 AM on Sunday morning, and
around 11.30 I arrived at Berlin Schoenefelt Airport. I went to the
airport meeting point to catch up with 4 other participants, and we
travelled along together to hotel Courtyard Marriot in the eastern part
of Berlin. We took a complicated route, and we arrived in the hotel
around 3PM. After dropping our bags in our rooms, we went walking around
to see something of Berlin. We went to Potzdammer Platz, Brandenburger
Tor, the Holocaust monument, and we visited “Tiergartenstrasse 4”.
Tiergartenstrasse 4 is the memorial site for the systematic exclusion
and mass murder of persons with psychosocial and other disabilities
during world war 2. Tiergartenstrasse 4 was the headquarters where these
crimes were coordinated (by 60 doctors), which was called “Aktion T4”.
(also see http://www.visitberlin.de/en/spot/t4-memorial-and-information-centre-for-the-victims-of-the-nazi-euthanasia-programme-at-tiergart )
The information and memorial site is very new (it dates from 2014), and
in fact, the late realization of this monument may actually symbolize
the slow process of awareness on the importance of viewing persons with
disabilities as equal citizens, and not to portray them as if they were
“inferior”, and “a burden”, and “a threat to society’s wellbeing” (as if
they do not belong to “society”?) and so on. It is important to
recognize the value of the life of each person, with or without
disabilities (and value is not only “profit” or “ability to work”).
Every life is precious, and worthy of the efforts and investments needed
for inclusion and the equal enjoyment of rights and freedoms in life.
Nobody should be left behind, as the Sustainable Development Goals put
it. And also the latest UN treaty - the UN Convention on the Rights of
Persons with Disabilities (CRPD) - underlines the need for action
regarding the human rights of persons with disabilities, and calls to
remedy exclusion, and to realize full equal rights and freedoms for
persons with disabilities. So the discussion on how society deals with
persons with disabilities is very actual, and the late realization of
the T4-monument corresponds with these recent developments in human
rights awareness. So for me, the visit to the T4-monument was more than
grieving remembrance of the lives lost, but in a way, I noticed that it
also gave me a sense of hope, since the monument itself may mark a
change in society’s mind-set towards persons with disabilities,
especially since it is also an information point, explaining the
discourse of these horrors in a way which enables reflection upon our
current culture regarding the question: “How much is a life of a person
with disabilities worth?” The visit to the T4-monument was very
impressive to me. I hope this monument will raise a lot of awareness
world-wide.
After this interesting walk in the cold outside air, we went back to the
hotel to join the Welcome Dinner at 19.00. It was very nice to see old
and new members of ENUSP, and the dinner buffet was also nice. During
the evening more and more people arrived, resulting in an even more
cheerful atmosphere. When the buffet closed, I went to bed, just like
most people, tired of a long journey.
*
On Monday 14 November 2016, the ENUSP Empowerment Seminar started at 9 AM.
Olga Kalina, chair of ENUSP, welcomed us all and introduced the goals of
the Empowerment Seminar, which was to identify and strategize ENUSPs
actions for 2017, and to compose an Action Plan for the near future of
ENUSP.
We started with a round of self-introduction, where all participants
briefly introduced their scope of interest or experience, and their
expectations and ideas on the way forward. There were 29 participants
from 19 different countries (Denmark, Czech Republic, Lithuania, Norway,
Ireland, Romania, Ukraine, Poland, Sweden, Georgia, Finland, Germany,
Latvia, Bosnia and Hercegovina, Russia, Italy, the Netherlands, Slovenia
and France), and the very interesting introduction round continued
after the coffeebreak. It was clear that there was a lot of experience
and expertise in the room. Being together with all these amazing persons
all advocating for change was very inspiring in itself. It makes me
proud to be part of this.
Then followed a presentation by David Wichera and Kathrin Vogel on the
Runaway House “Villa Stoeckle” in Berlin, which is a famous initiative
offering a safe place, free from psychiatric influences, for persons who
want to avoid being placed in a psychiatric institution, and which is
run by the German Association for Protection against Psychiatric
Violence. For details about the practice of the Runaway House in Berlin,
you can read this article: http://www.peter-lehmann-publishing.com/articles/others/iris_eng.htm . This article basically reflects the presentation on this very inspiring practice..
The presentation led to an interesting discussion, addressing also the
less positive developments, such as the limitations caused by the
positioning of the Runaway House under legislation regarding
“homelessness”, which was the only way to remain free from health care
influences, and still be a legally recognized shelter. The result is
that only people who are homeless or at risk of homelessness can use
this service, while in fact many more people would like to benefit from
this non-psychiatric form of support. The lack of options to position
non-medical approaches in the health care domain is a very big barrier
for the realization of alternative services, especially in terms of
legal recognition, funding and so on.
Also, German legislation, and consequently its funding, is nowadays
severely limiting the length of stay of the residents in the Runaway
House, which has now been reduced from several months to only 4-6 weeks
in the Runaway House. Originally, the Runaway House could offer much
more support to persons, such as for example support to come off
psychiatric drugs. But now the stay is actually often too short to
support persons to actually cope with the process of coming off the
psychiatric drugs, and to regain control over their own lives again.
This is a very big problem.
So there are many ways in which the German legislation creates barriers
to fulfilling the original concept of the Runaway House. Finding options
under the existing legislation to actually start and maintain a
non-medical support shelter has been an ongoing struggle since the
start, and actually, the situation is getting harder in recent years in
many ways. For example, it is also getting harder and harder for anyone
to find a place to live in Berlin. Therefore, it is a continuous
struggle to make the concept of the Runaway House work. And as a result,
the ability of the Runaway House to actually provide enough support at
all levels is a challenge, and it’s a struggle to prevent compromised
outcomes.
It was important to hear not only about the positive sides of this very
valuable initiative of the Runaway House, but also on the challenges and
barriers to the realization of such non-psychiatric alternative
services. We all recognized these barriers and challenges.
Then, around 13.00, it was time for lunch downstairs, and of course, nice and interesting conversations.
After the lunch break, the seminar continued with a discussion on
empowerment and what it means to us, both at the individual and
organizational level, and how to achieve and enable empowerment
concretely. All participants were asked to actively participate in this
discussion. First Peter Lehmann presented a number of important themes
concerning empowerment, starting with the issue of shortened
life-expectancy (living 2-3 decades shorter) as a result of psychiatric
medication, such as by sudden cardiac arrests, metabolic disorders, and
diabetes to name a few. The fact that this catastrophe is not addressed
by the people in power (politicians, drug companies, monitoring bodies
and so on), and even worse, the fact that people can be forcefully
subjected to measures that reduce their life-span, in fact amounts to
manslaughter and genocide, and it also clearly illustrates that neither
persons with psychosocial disabilities nor psychiatrists are “equal
before the law”, but there is a serious and discriminatory imbalance in
equality and recognition before the law. The voice, experience and even
the life-time of persons with disabilities is given less value, for
example in courts. We are marginalized by the law, which is in fact a
clear form of disempowerment. We need to fight for equal recognition as
persons before the law, including demanding protection from toxic drugs
that lead to preventable deaths of people. This is a real struggle for
recognition.
The involvement of drug companies in the development of services, and
even in advocacy groups (such as Gamian) is also disempowering us. Drug
companies are known for manipulative and false publications on the
effects, risks, alternatives, symptoms and meaning thereof, since drug
companies make profit of the biomedical model of “brain illnesses”, and
they are not interested in the social model. The persistent
misinformation is having a big impact, for example in psychiatric
guidelines where the use of medication is only promoted as “beneficial”,
“the only option”, and generally “needed for a longer time”, while
experiences in fact aren’t so positive at all, and in fact, often even
overwhelmingly negative, such as feeling numbed, dazed and disabled, as
well as the health risks and premature deaths. The negative outcomes are
largely ignored in the official research by drug companies. On the
other hand, independent research shows that psychiatric medication in
fact reduces the grey mass of the brain. This poses a very physical
barrier to empowerment. Fighting the influence of drug companies is a
tough battle.
Also the disagreements within the user movement (for example on forced
treatments, such as forced medication in crisis situations) are not
helping to maximize empowerment.
ENUSP is the only European organization of users, ex-users and survivors
of psychiatry that fully rejects any funding from the pharmaceutical
industry.
As another point regarding empowerment, there is the trauma of being
deprived of many rights while under the psychiatric system, which leaves
many scars in the person’s life, including feelings of powerlessness,
which is again clearly disempowering, while we need empowerment.
And also the political indifference is another barrier, resulting in
that we are not heard or listened to. Similarly, there is indifference
in the psychiatric profession, shown by the lack of whistle-blowers.
So there are many barriers that hinder our empowerment, and it is
important to find out how we can fight and overcome these barriers, to
enable our empowerment.
Then the floor was opened for discussion, and participants were asked to
share their thoughts on what empowerment means to them, and how it can
be enabled, both on the individual as the organizational level. This
was a very interesting discussion.
Important issues that were brought up were for example on providing
individual support that enables and empowers people, and on changing
stereotypes and showing the potential of our capacities in practice by
pilot projects, on watching over your own wellbeing while being involved
in the hard reality of our advocacy work, on overcoming self-stigma and
building self-confidence, and the feeling to have a crowd behind you
that supports you, not feeling alone and small, but feeling part of
something bigger and something good and something that is moving
forwards, to feel needed, and to feel that it matters what you do, that
you can make a difference, being heard and believed and included.
Respect, support and self-esteem were returning themes. Also freedom is
of course needed for empowerment, so we need to get our rights, and to
have control over our own lives. Finances and basic needs are also
important, since poverty is disempowering, and the same goes for a lack
of support. And also the bigger social and political situation is
affecting the level of empowerment, such as budget cuts, rising
xenophobia, paternalism and society’s focus on control, which seems to
disempower us all (and how to stop this?). Also power imbalances in
conferences are disempowering. The involvement of young persons in the
organization appears to be empowering.
Lina Ciuksiene referred to the definition of empowerment as identified
by Judi Chamberlin (who was the first chair of WNUSP), which offers a
very practical outline of the elements of empowerment. You can find “The
Working Definition of Empowerment” by Judi Chamberlin here: http://www.power2u.org/articles/empower/working_def.html
There was also a very interesting discussion on terminology, but
unfortunately I had fallen a bit ill, and I had to go to the toilet
several times during the day. I was still able to participate and I only
missed a few moments of the seminar. At this point, I missed a part of
the discussion on terminology and awareness. Some people find it hard to
identify with the word “disability”. It should be seen as: All persons
have different abilities.
After the afternoon-coffeebreak, we continued with the report of the
Board work in 2016. Olga presented the overview of ENUSPs activities
(work of the board and advocacy work) in 2016 so far. This included:
The renewed website at www.enusp.org and the increasing activities on social media.
In January 2016, ENUSP was represented at the EU Joint Action on Mental Health and Well Being Congress.
In March 2016, ENUSP participated in EDFs Board meeting in Amsterdam in
March 2016, and a message was delivered at the opening of the 15th
session of the UN CRPD Committee.
In April 2016, ENUSP made a submission to the UN CRPD Committee for the Day of General Discussion on CRPD article 19.
And in May 2016, ENUSP made a presentation at the hearing of the
European Economic and Social Committee on the Concluding Observations on
the EU, and 3 board members participated in EDFs General Assembly on
article 12 which was held in Dublin. Also, ENUSP delivered a video
message in response to the public consultation on the Council of
Europe’s Draft Disability Strategy 2017-2020.
Then in June, ENUSP was represented at the European Commission’s Work
Forum on the implementation of the UN Convention on the Rights of
Persons with Disabilities in the EU.
In September, ENUSP was represented at the European Congress on Mental Health in Prague.
And in October, ENUSP was represented at the EU Compass Forum on Mental Health and Well-Being.
ENUSP has also prepared several publications, and submitted an article
“Sick or Well” for publication in magazine L’Information Psychiatrique.
I only gave a brief update on process of the Draft Additional Protocol
on “the protection of human rights and dignity of persons with mental
disorder with regard to involuntary placement and involuntary
treatment”, which is an addition to the Oviedo Convention of the Council
of Europe, (this terrible document can be found here: http://www.coe.int/t/dg3/healthbioethic/activities/08_psychiatry_and_human_rights_en/ )
The Draft Additional Protocol has been criticized by many high level
organizations, as well as by the Council of Europe’s own Parliamentary
Assembly (see http://assembly.coe.int/nw/xml/XRef/Xref-XML2HTML-EN.asp?fileid=22757 ).
Yet the Draft Additional Protocol still seems to be not withdrawn.
Further action on this will be needed, including joint actions with
other organizations, and strategic lobbying against this Draft
Additional Protocol.
As a last topic of the day, the various topics of the working groups
were introduced and explained, and participants were asked to make a
choice and register for 1 of the 5 options, which were:
1. Life of ENUSP
2. (Ex)user/survivor designed services
3. Presentation/promotion of alternative methods
4. CRPD: mental health and criminal law reforms
5. ENUSP representation and lobbying at major International/European events
I was listed as a facilitator of Working Group 5 (representation and
lobbying), so I didn’t have to choose between all these very interesting
sessions.
At 18.00 the first seminar-day ended, and at 19.00 we gathered in the
lobby to depart to the dinner outside the hotel, in the Italian
restaurant Amici, which was rather close by. I didn’t eat much, but I
did have a really nice evening. Liv (Norway) and I spent all evening
with Ruslan, an Ukrainian ENUSP member who basically only spoke Russian,
but we managed to communicate in many creative ways, and it was really
nice and interesting, and quite amazing that we managed to overcome the
language barrier to quite some extent. We watched funny videos together,
listened to Russian music, and we even danced in the streets of Berlin
(with music on the headphone, quite hilarious). I laughed a lot, and had
a great time.
After a final soft drink in the hotel bar, I went to bed without
blogging, since I still needed to recover physically. I slept well.
*
On Tuesday 15 November, ENUSP Empowerment Seminar day 2 started at 9 AM
again. Participants worked in separate working groups, covering 5 areas
of action, and focussed on setting priorities, planning concrete actions
for 2017-2018, and methods to put them in practice.
These were the working groups:
1. Life of ENUSP
2. (Ex)user/survivor designed services
3. Presentation/promotion of alternative methods
4. CRPD: mental health and criminal law reforms
5. ENUSP representation and lobbying at major International/European events
The working groups lasted 2 hours. Working group 5 (my group) had a very
productive and inspiring discussion, and we came up with a nice and
realistic list of strategic advocacy actions for ENUSP. It was really
inspiring to exchange thoughts and to put our ideas together.
After the morning coffee break, the working groups started reporting
back. I cannot summarize all the action points, but only give an
impression of the themes and topics that came up.
Group 1 had been discussing and strategizing actions concerning the life
of ENUSP, covering issues as capacity building, member-questionnaires
to identify their needs and desires, and developing plans for the next
GA.
Group 2 had developed concrete plans for developing information
brochures, and training packages on a number of topics, as well as
monitoring and evaluation of services, which ENUSP could offer for a
fee. Such products are combining PR and advocacy with capacity building,
empowerment, and can also generate more finances for ENUSP. This was a
very promising action plan.
Group 3 had been discussing the presentation and promotion of
alternative methods, and identified a number of concrete actions to be
taken, such as actively reaching out to all members to ask for any good
practices. In every country there are also places where positive things
are happening, and where steps are being made in the right direction,
such as the campaign for the development of drug-free facilities in
mental health hospitals in Norway, which is now being considered for 6
locations. And although this is not for all of Norway, and not yet fully
realized, it is a development that ENUSP would like to follow. So ENUSP
would like to know about any positive development or service and place
these in the spotlight, on the website etcetera. Webinars could be a way
to help promoting good practices, as well as translations of
information on the website, to make the information on alternatives more
accessible for everyone. Another recommendation was to connect to
existing networks on alternative practices, such as IMHCN and INTAR, and
other networks with a specific focus, such as Intervoice (hearing
voices network) and IPS (intentional peer support).
After lunch, Working Group 4 presented the findings of their discussion
on criminal law reforms. While society may think that forensic
psychiatry is more humane than placement in prison, many user
experiences in fact testify of the opposite. Also the CRPD Committee
calls for abolition of “sentence to treatment”, as the Concluding
Observations on Denmark show. Society and politicians need to be
sensitized and made aware of the need to change the criminal system,
which is a challenging task to take on. It would be good to develop a
position paper on criminal law reform, addressing the need for abolition
of the insanity defence, and aspects as non-discrimination, fair trial,
mitigation, reasonable accommodation and so on.
Then I presented the summary of actions identified by Working Group 5.
We identified that the EU level will not be our priority, since there
are serious limitations in their legal competence over our issues, and
the situation is even more complex after Brexit, so we shall better put
our energy elsewhere.
Stopping the Draft Additional Protocol of the Oviedo Convention of the
Council of Europe is clearly one of our priorities, since it would also
affect the standards used at the European Court on Human Rights, and the
European (monitoring) Committee on the Prevention of Torture, so that
is something that is clearly worth our energy.
Peter Lehman would like to collect national guidelines on medication
use, to study if there are any references on withdrawing from
psychiatric drugs, and if yes: how is it addressed.
The Human Rights Committee in Geneva is preparing a General Comment on
the Right to Life, and the plan is to organize a side event
(co-organized with WSO Norway) on the shortened life span by psychiatric
medication, with Peter Lehman and Peter Gotsche as speakers.
Also, we should keep an eye on the WHO and the World Bank, and their
programmes on “closing the treatment gap” (which basically means they
want to export and install mental health care services in the Global
South, and we should make sure that only CRPD compliant practices are
promoted).
One other priority is to support ENUSP-members in giving input to the
country reviews at the UN level (such as UN CRPD Committee, CAT
Committee, ICCPR and UPR), so we should put the agenda of country
reviews on the ENUSP website, and offer examples of shadow reports, and
further guidance and support throughout review processes.
After the reports of the Working Groups, we discussed which actions
would be prioritized, how to approach this strategically, and who would
be potential partners. And in this way we started compiling the outline
of the action plan for ENUSP 2017-2018. We did not get to finish the
full action plan in the remaining time, but we did reach agreement on
the actions mentioned.
The ENUSP Empowerment Seminar ended at 17.00. Several participants had
already left due to early flights. And in the evening most participants
left to go home. My flight was leaving the next day, on on Wednesday 16
November at 6PM. So I had a free evening. Stephanie, Hege and me went
out to meet Jasna and her friend in a bar in Kreuzberg. That was really
nice. We had a dinner together, and then we headed back to hotel, where
we did some more socializing with some remaining ENUSP participants. I
went off to bed just past midnight. Fortunately I had been feeling
better today, and again I slept well.
*
On Wednesday 16 November, there were only a few ENUSP participants at
the breakfast. My flight was leaving at 6PM, so I had a lot of free
time, but I did not go into Berlin, because of costs and workload. I
decided to work a bit on my laptop in lobby and to chat with the
remaining participants some more. That was also very nice.
Around 13.00 I travelled to Berlin Schoenefelt Airport together with
Smaranda, since travelling together is much nicer than alone. And at the
airport I worked some more, until it was time to catch my flight back
home. The trip was very smooth, and I reached home without any hassle.
I was tired, but also very inspired, filled with great ideas that I can
also use for my advocacy in the Netherlands. THAT is empowerment in
practice. So the Empowerment Seminar was successful. I am very happy
that I was invited, and that I could be part of this once more. It was
again such a nice, warm, welcoming and inspiring meeting, with amazing
peers, all pioneers in our own contexts. It is so precious to have a
platform where there is understanding for the struggles that we all face
in our work, and which makes us feel that we are not alone, but
together in this. I loved it. This opportunity to meet with other
ENUSP-members really gave me a boost, and lifts me up, and I feel ready
to carry on with renewed energy. This has been another great and
enriching experience.
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