ENUSP Empowerment Seminar Berlin 2016 - Reisverslag uit Berlijn, Duitsland van Jolijn Santegoeds - WaarBenJij.nu ENUSP Empowerment Seminar Berlin 2016 - Reisverslag uit Berlijn, Duitsland van Jolijn Santegoeds - WaarBenJij.nu

ENUSP Empowerment Seminar Berlin 2016

Door: Jolijn Santegoeds

Blijf op de hoogte en volg Jolijn

17 November 2016 | Duitsland, Berlijn

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.

  • 21 November 2016 - 16:30

    Sean Crudden:

    Thanks for a great report, Jolijn. I would have liked to be there but I suppose I am going to die soon if Peter Lehmann is to be believed. Incidentally I think it is not just our responsibilty to promote change. Change is so obviously required that those in charge of the mentally ill; administrators, doctors - even politicians; bear a heavy responsibilty. They have all been promoting a great lie for too long at our expense?

  • 21 November 2016 - 18:46

    La Nostra Veu. MALLORCA.SPAIN:

    Un informe completo y realizado en primera persona que nos sirve de guía para el trabajo en nuestra Asociación.
    Gracias Guadalupe.

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