WNUSP taskforce meeting in Geneva

Saturday 9 April 2016, I arrived in Geneva in the early morning, after a nightly travel. I went straight to the office of the International Disability Alliance (IDA, http://www.internationaldisabilityalliance.org/en ) located in the Ecumenical Centre of the World Council of Churches. I was the first participant to arrive. A bit later also Gabor Gombos, Amba Salelkar, Michael Njenga and Robinah Alambuya arrived together. The 5 of us were forming a taskforce of the World Network of Users and Survivors of Psychiatry (WNUSP, http://wnusp.net/ ). Our mission during the weekend was to make a concept note for fundraising for WNUSPs activities for capacity building. This included the IDA-fellowship-project of Michael Njenga, who is developing an Advocacy Toolkit for WNUSP. And it also included the reorganization of WNUSPs structures, which I am coordinating at the moment. The taskforce-meeting brought together a team of experts from within WNUSP, to conceptualize and prepare for further activities concerning capacity building.

IDA had enabled us to meet by funding the travel and accommodation. There were also about 40 other disability rights activists in another workshop hosted by IDA on the Sustainable Development Goals, with whom we shared the break times. So the building was filled with a similar kind of activists, which was very nice and inspiring.

At 9 AM the WNUSP taskforce meeting started. We started with an introduction by sharing our personal experiences and backgrounds with each other, to illustrate why we are here and what drives us to do what we do. Each story was heart breaking, and some tears were shed. We all felt very much connected with each other, and supported by each other. It is always extremely special to share experiences with peers, since the level of recognition and understanding amongst peers is unique. This was a very powerful start of the taskforce-meeting.

The goal of the meeting was to make a concept note for fundraising to enable further development of WNUSP. So we need to map out what WNUSP needs.

First I shared an update about the reorganization process of WNUSP. In the past weeks I have been updating some parts of the website, such as the welcome text, the banking data, the creation of a Paypal-account, and I managed to unlock the official WNUSP email and started answering the messages (and it appears that even a late answer is often appreciated). Still a lot of data needs to be retrieved from older accounts, and checked and placed on the website, such as the list of memberships. To this end we will draft a letter and ask all WNUSP members to update their membership, to ensure that we have the right contact details, and to ask if they agree to be listed on the website (especially for individual members). At the same time we will also make a call to pay the membership-fees. And last but not least, the hosting organization, LAP in Denmark, has informed us that from next year on, the registration of WNUSP cannot stay in Denmark, so we need to re-register WNUSP in another country. So we need to find a new place for WNUSPs registration, and make a smooth transfer, so therefore the organizational overview is extra important. Such big changes in the organization will need to be approved by the General Assembly (GA), and probably the Statutes also need to be adjusted according to the legislation in the particular country. So there is a real need to organize a GA for WNUSP. We are considering Kenya as a venue for the GA, because countries in the Global South are preferred, and USPKenya has the organizational capacity to manage such big projects (including a permanent accountant). So the plan is to have a WNUSP GA in Kenya in 2017, and we need to start working on the organization of this GA.

Since several WNUSP members and board members will be present at the INTAR conference in India in November 2016 (see http://intar.org/2015/09/intar-2016-pune-india-just-announced/ ) , it makes sense to plan a WNUSP work-meeting after the INTAR Conference, to prepare the GA in Kenya.

And since the INTAR conference will be about alternatives to the paternalistic approaches towards mental health, extreme states and recovery, and several WNUSP members are active on this, and have developed alternatives and good practices themselves, it will be very valuable to meet with a team of WNUSPs experts at the INTAR conference, in order to discuss these alternatives in detail, and identify a clear and democratic position of WNUSP on alternatives in as much detail as possible, including on concrete good practices. There is a clear need for a detailed position on good practices.

Then Michael shared the outline of the Advocacy Toolkit he is working on. The first part will be about legal harmonization, with the CRPD principles and various concepts and strategies, for example concerning mental health laws and legal capacity. The second part will be more about article 19, zooming in on community based support and barriers thereto, and which reforms in policies and programmes are needed. The third part will connect the CRPD to the Sustainable Development Goals, which still needs some more clarification (And since I am an engineer on Sustainability, I immediately shared some thoughts with Michael on this theme). The last part of the Toolkit will be about strategies for implementation, and stimulating reflection. It is a very promising project.
The Advocacy Toolkit will need to be agreed on by WNUSP. And the INTAR conference would be a good opportunity to discuss the Advocacy Toolkit with a team of experts, to develop the best possible toolkit.

So all of this together brings us to draft a concept note for meeting with a team of WNUSPs expert at the INTAR conference.

During the rest of the day we worked on the concept note, defining who we are, where we are now, and what we need. We made an overview of the milestones in the history of WNUSP, which is quite impressive. We were all very enthusiastic about the idea to republish the 2001 Statement of principles by WNUSP (see page 12 of the minutes of the WNUSP GA in Vancouver in 2001, http://wnusp.net/documents/GeneralAssembly2001.pdf ). The statement of principles of WNUSP fed into the development of the CRPD, and basically all points are addressed in the CRPD, which is a huge milestone for WNUSP. For the occasion of the 10th anniversary of the CRPD, and WNUSP 15th anniversary as an official organization, it would be nice to bring this document under attention again. The statement of principles of WNUSP is easy to read and accessible, and it could be used as a core position paper for WNUSP membership. The taskforce has forwarded this suggestion to the WNUSP board.

Then we discussed some more practicalities, such as the preferred dates of the WNUSP experts meeting at INTAR, and the preferred format: a public thematic event on 1 day, and 2 days for the WNUSP capacity building.

Around 5.30 we ended our meeting, and went out to have a nice dinner together. When I got back to my hotel (Ibis centre nations) I was too tired to write my blog, which wasn’t surprising since I had been awake for about 40 hours by then. So I went straight to bed, and I slept very well.

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The next day, Sunday 10 April 2016, the WNUSP taskforce meeting continued. From 9 AM till 12 noon Gabor, Robinah, Michael, Amba and I continued to work on the concept note.

First we discussed the aspects of budget estimation: travel (flights + ground transport to Pune), accommodation (all-inclusive + 10% extra for reasonable accommodation in case someone needs a form of support for participation) and travel insurance. Then we made a draft list of nominees, taking into account the relevant expertise and geographical balance. We identified 10 nominees for the expert meeting, which enables a total budget estimation for fundraising. The nominees will be approached, after the WNUSP Board agrees, and in case they are not able to come, the preference is replacement by a person from the same geographical region. We will ask the travel agent who is doing the logistics for the INTAR conference to calculate the budget for the WNUSP expert meeting, and then we can start approaching donors. The draft concept note was finished before the meeting had ended.

We then discussed some more concerns and points of attention for the development of WNUSP as an organization, and the process of reorganization. We agreed that the internal structure needs more clarification, such as the linkage between WNUSP and regional networks (ENUSP, PANUSP, and TCI Asia) and member organizations. WNUSP has been mainly focussed on the international human rights arena, and we, the taskforce, suggest to move to a more 2-way structure, more bottom up, and giving more practical support to our members, so that membership has more benefits to the members. Frequently asked questions of members (and others) to WNUSP include very concrete questions on good practices and advocacy strategies, so the Advocacy Toolkit and the WNUSP expert meeting at INTAR will be fulfilling very relevant needs. For the implementation of the CRPD it is extremely important that WNUSP provides a position with practical and concrete information on good practices and good reforms. Otherwise the professionals might keep on consulting each other and family members, and not us. So we, the taskforce, consider that it is time to move beyond the abstract level, and put more focus on the practical level.
We also shared some other concerns, such as on the Lancet paper which argued that the CRPD was not a good development – which included a user supporting that point of view. Such developments could jeopardize the paradigm shift, and such a division of views could lead to a scenario where WNUSP is excluded, and only “compliant” users are included. This is a concern.
We also talked about the Essex Autonomy Project, which analysed the compliance of UK laws to the CRPD, and wrongfully concluded that guardianship was supposedly NOT in violation of the CRPD, although it clearly is. This is also a very concerning development. WNUSP is invited to make a presentation in a session of the Essex Autonomy Project, and it would be good if we could send a very powerful representative there, such as Tina Minkowitz, if she would be available.

The meeting ended at 12 noon, when Gabor had to leave. During the meeting I have distilled action points for WNUSP, and in the sunny afternoon I sat in a park, where I prepared a WNUSP to-do-list concerning reorganization. It covers a lot of tasks, but it is doable.

At 5 PM Amba and I had an appointment with Robinah in the lobby of the hotel. Robinah had brought some user-made products from her self-help group in Uganda: a range of various beautiful handmade bags with African prints, and lovely handmade bracelets. Since most users in Uganda have no income, it is very important to find a market for the user-made products. I immediately got some ideas , such as linking up with ENUSP, since ENUSP is also looking for ways to sell user-made artworks, and the efforts could possibly be combined.

Amba left at 6 PM to go to the airport, and since Robinahs flight was taking off in the middle of the nights, she went to her room early. So I spent my evening on my own, doing some more work, and again going to bed on a reasonable time, without finishing my blog.

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Today, at Monday 11 April 2016 in the morning , I went to Palais des Nations to replace my annual UN badge that gives me access to the UN meetings. The security staff still remembered me and greeted me very friendly “Hey, you are back again” (which they do ever since the “dress-code-incident” of several years ago). It’s a kind of funny that I am having this special relation with the UN security. At least I can say I made an impact there :)

I spent most of the day working in the “serpent bar” at the UN, enjoying the free wifi. And I got many compliments about my appearance, such as “This is the nicest outfit I have seen at the UN”, and “I am so glad to see something else than procedures at the UN, you make my day”. It is really nice to get so many spontaneous friendly reactions. It made me feel like a star :) So I enjoyed being there, even though I was alone and mainly working on my laptop. People just approached me to let me know that they appreciated me. That is just awesome to experience.

At 3 PM I was supposed to have my appointment with the UN media officer, Liz, at Palais Wilson. But unfortunately she had fallen ill, and she had to cancel the interview. Maybe it can be done tomorrow. I hope so, because I really have been looking forward to it. Otherwise it will have to wait till my next visit to Geneva. I don’t know yet when that will be.

After a walk, I went back to Palais des Nations and worked some more till 5.30 PM. And then I went out and struggled to find some food, something which I find really hard when I am abroad on my own, and then I have to push myself over the barriers. Eventually I just took a microwave meal from the supermarket, which was quite okay. And then I went to my room, and finished this blog. And now it is again late, 2 AM.

Tomorrow I will see the UN CRPD Committee in action again, with the public reading of the draft general comment on article 6: the rights of women and girls with disabilities. I am looking forward to that. I find the CRPD Committee very inspiring. So I might dream about that (instead of dreaming about finding expensive rare cars in my hotel room… lol )
Goodnight!