ENUSP Empowerment Seminar day 3

Today it’s human rights day, 10 December 2013. Originally I was supposed to be at a meeting in the Netherlands today, with the Ministry of Internal Affairs, who were going to present a national action plan on human rights in the Netherlands, for which I was consulted. But I couldn’t join the meeting, since I am still in Bucharest for the Empowerment Seminar of the European Network of Users and Survivors of Psychiatry (ENUSP, www.enusp.org). I got the Dutch national action plan by email, and I already got informed by other Dutch NGO’s that it is very disappointing (disgusting is the word, it does not even acknowledge discrimination against persons with disabilities). So in a way I am glad that I decided to prioritize going to Bucharest for ENUSP, which is certainly more inspiring. (and also I had to cancel/postpone a lecture on the UN CRPD at Utrecht Academy in the Netherlands, and I hope I can do that another time). So I am in Bucharest, participating in the ENUSP Empowerment Seminar, which was a priority for me.

Today was the third and last day of this seminar, which is made possible with support from Mental Health Europe (MHE, www.mhe-sme.org ) under the European Commission Progress Programme with assistance of the Romanian Orizonturi Foundation (http://orizonturi.org)

At 9.00 AM we started with the first session: Hands-on Action: who does what? This session was led by Stephanie Wooley. In the past it had not been clear who is in charge of certain tasks from the action plan, so now we basically reviewed the actions that we identified yesterday and attached names and dates to the list of identified actions. The 3 main themes were still: General Assembly (GA) and organizational structure, communication and fundraising. Quite some detailed arrangements were made on organizing the next General Assembly (which will probably be held in Denmark), sending out messages to members, and getting finances for ENUSP to be more active and to enable payment of staff, such as Gabriela Tanasan as a professional fundraiser. This blog is not the proper place to give a full overview of all the detailed appointments that were made today, but I think I have already given a clear overview of the action points for ENUSP in my previous entry (ENUSP Empowerment Seminar day 2, at 9 December 2013).

After the coffee break we proceeded with the second session: user involvement in Romania / Consolidation of the network – how to develop greater user involvement across European countries. In this session the two Romanian user organizations presented themselves.

First, Gabriela Tanasan gave a presentation on the Romanian Orizonturi Foundation (http://orizonturi.org). Orizonturi means Horizon. The goal is to support users and promote human rights. Orizonturi is acting against discrimination, stigma and promotes community integration of users/survivors. The organization is comprising a mix of professionals, users, community members, carers and basically anyone who is supportive. Core activities are awareness raising, spreading information, education, and therefore meetings in the hospitals are held. Orizonturi is also actively trying to influence policies on mental health care, and on the local level they identify the issues for mental health, identify solutions and put these into practice. After starting locally, they have now organized 5 national meetings on national policy and produced a position paper. Orizonturi aims to empower the user’s voice, promote knowledge and works on strategic relationships; stating that the rights of persons with disabilities are human rights, and by improving these rights together we can make the world a better place. The efforts of Orizonturi have caused the government to start a national centre on mental health (which opens next year), which should form the bridge between the ministry and the grassroots level, however unfortunately Orizonturi wasn’t meaningfully consulted in the development of these plans.
For the users in mental health services, Orizonturi has a weekly meeting, called the Open Horizons club, which is fully user-driven. For self-help and advocacy they produce a magazine called 2B (A fi) and they have a blog called Blogging the dream. They raise awareness by going around in town (travel beyond barriers). Volunteers are trained to become advocates on mental health. Users are also involved in teaching: local education in the mental health field. Sharing personal experiences is really a big step, because in the Romanian mentality it is not common to share these things, and the resistance to the initiative can be huge. Orizonturi also has twinning projects with Finland and Austria.
The biggest barriers for Orizonturi are: lack of resources, fear, absence of advocacy skills, no access to information, lack of support, resistance to their expertise, “tokenistic inclusion” (not getting meaningful role) and stigma. Often people seem not interested in supporting the user movement in Romania.
It is obvious that mental health services are very poorly developed in Romania and the Romanian organization Orizonturi is in a very hard pioneering position. The ongoing efforts of Orizonturi (and of Gabriela as a founder) deserve a lot of respect. It is very impressive what they do here.

After the presentation on Orizonturi, Stefan Bandol, also a Romanian user/survivor, then spoke about his project of Aripi (which means Wings in Romanian). The recent project of Aripi is called “Casa Cu Casa Se Face Sat”. After a big piece of land of 27.000 m2 in the middle-north of Romania was donated to Aripi, the plan of “Spornic European Village” was born. Stefan is working on creating a village at this piece of land, where people can recharge themselves, both users and non-users of mental health care services. There are many plans combined into this initiative, such as building various typical Romanian and/or European houses on the compounds (cultural preservation), enabling protected housing for users, protected work, public leisure, tourism and accommodation, agriculture, and providing alternative therapies and mental health supportive services. This is surely a very ambitious plan. The project on location will be user-driven, and the aim is to create de-stigmatization and de-institutionalization.
Stefan showed us a video about this new project, but unfortunately I can only find the Romanian version without English subtitles online: http://www.youtube.com/watch?v=6LQtBHDElS0

In reaction to this presentation it was said that the Runaway house in Berlin was also started after a substantial donation, and whether it would not be easier to create a runaway-place for users, instead of this very ambitious plan which might take many years before it is realized. There wasn’t any time to discuss this further. Just before 12.00 the first participants had to leave to the airport, so they left.

Then it was time for a short Evaluation session and the Concluding remarks by Piotr Iwaneyko, chair of ENUSP. All participants were satisfied about the meeting, and we have confidence that ENUSP can survive the disruptions from the past year; The withdrawal of several board members (due to wellbeing or other reasons), the decreased functioning of the board and the lack of resources and communication can be solved. We all want ENUSP to continue, and the tasks are now clear. We know which work we have to do, and who will be the focal points for the various actions. During the past days, we have reset ENUSP and restructured the tasks. Now it is a matter of commitment of members and board members to realize the action points. ENUSP is ready to continue.
There is a lot of work which needs to be done, and I think all of us sensed the urgency to make it happen. It had been slightly depressing to face all the issues that need to be addressed, because it was quite a lot, and some issues were so basic that it felt like there wasn’t much left of ENUSP. But after all, we succeeded in making a concrete realistic plan, which is giving us all new hopes. We can do it. If everyone commits to the action plan, we can be really strong again. So now we face the future. ENUSP will grow again.

Then it was time for lunch, and after lunch we sat together in the lobby for a while. Many people were leaving, but I’m staying 1 night longer (on my own expenses), because the flight tomorrow was significantly cheaper (about 50%), so then more ENUSP members could be invited to join the Empowerment Seminar from the budget. And I am happy that I am having some time to discover the city of Bucharest.

So in the afternoon the remaining participants decided to go into Bucharest. Some didn’t want to wait, because they had to leave in the evening, so we ended up in smaller groups and couples. Around 3 PM I went into town with Stephanie Wooley. We went to a Christmas market, and walked around in the old streets in the centre. Later in the evening we had dinner in a well-known Romanian restaurant Caru Cu Bere, where one of the dancers spontaneously invited me to dance a waltz with him (I didn’t know I could waltz, but it was fun). I had a very nice evening and I had a great conversation with Stephanie Wooley. We just couldn’t stop talking :) We have so many common grounds. Once again, it is so inspiring and empowering to meet peers. I really enjoyed exchanging views and experiences with all the participants, who are all pioneers in their own countries. The level of understanding within the international user movement is not comparable to any other organization. I really love to be part of this European Network of Users and Survivors of Psychiatry.

Stephanie and I got back to the hotel very late (0.30), and I still decided to write this blog directly, so by now it’s really really really late (almost 4.00). But tomorrow there is no meeting, so I can relax a bit more. I already know that I will be exhausted when I arrive in the Netherlands tomorrow late afternoon, but it was worth sacrificing my sleep to the job and the networking. I can catch up sleep later. I am grateful to be here. It was a good experience.