Elected into EDF Board at EDF AGA

This report comes a bit late, because the past couple of weeks have been very full of work, and my mind was occupied especially with the Dutch law reform on forced treatments, and my opportunity to speak out in the Dutch Senate/First Chamber on 16 May 2017. This was a very important moment in my efforts to stop the Dutch law proposal on forced treatments. I stated: “Lawmakers, organize care instead of coercion”. The Dutch law reforms are still in process at the Senate/First Chamber. Any support is welcome to convince the Dutch authorities of the need to ban forced treatments and to implement the UN Convention on the Rights of Persons with Disabilities.

EDF AGA
From 11 to 14 May 2017, I went to Madrid for the Annual General Assembly (AGA) of EDF, the European Disability Forum (http://www.edf-feph.org/ ).

I was lucky to have a direct flight from Eindhoven, and I arrived in Madrid on Thursday 11 May in the evening. There weren’t many EDF-participants yet, and I decided to relax and go to bed early, since I had had a very intense week after our Dutch protest against coercion in health care on 6 May (see: http://enusp.org/2017/05/09/news-from-members-protest-against-coercion-in-health-care-in-the-netherlands/ )

On Friday 12 May, I could take it easy, since the EDF Board Meeting would start no sooner than 16.30 PM. After chatting with some other EDF-participants that had arrived already, I decided to spend my afternoon with some sightseeing in Chueca, the rainbow neighborhood of Madrid.

Then around 16.00 PM, I went back to the Ilunion Hotel Pio XII for a short Board Meeting of EDF, to prepare the upcoming AGA, where new elections for the EDF Board would be held. I was there in the capacity of “replacing Board Member”, since ENUSP representative/ EDF Board Member Eric Olsen couldn’t be there and I observed in his place (as has been the case for some time now). The EDF Board meeting was just mainly about some practicalities, such as the upcoming new elections of the new EDF Board, which would take place the next day during the General Assembly. The meeting did only last for about 1 hour, and then I had a free evening.

By then, a lot of participants were arriving, and it was great to meet and greet each other, since we are all allies pushing for disability rights in Europe. Also 2 other ENUSP- board members, Stephanie and Guadelupe arrived, and together with Kristijan (MHE), we left the hotel for a nice evening together. First we did some sightseeing by car, and then we had tapas in Chueca, where we met some nice people, whom we eventually joined to a free festival in a park (as part of the official celebration of Madrid’s local saint: San Isidro). It was very nice, and we had great fun and good laughs together. It was like a mini-holiday. Eventually, we ended up in my room, in our “boudoir”, with some late-night snacks (I should mention the chorizo!), until we realized it was really getting late. It was really a perfect evening/night. (though only a short rest).

On Saturday 13 May, the EDF AGA started at 9 AM at ONCE Sports Centre, which was just around the corner of the hotel. The main theme of the meeting was the 20 years anniversary of the European Disability Forum, and many reflections were presented.
At 9 AM all participants were welcomed, and a session with various speakers started.
Mr. Miguel Carballeda Pineiro, ONCE Foundation president, welcomed us on behalf of ONCE, which is one of the hosting organizations which enabled the EDF AGA in Madrid. And Mr. Luis Cayo Perez Bueno, CERMI president, welcomed us on behalf of CERMI, the other Spanish organization involved at hosting the EDF AGA in Madrid. CERMI is also celebrating its 20 year anniversary, which nicely coincides with EDFs 20 year celebration.
Then, Yannis Vardakastanis, EDF president, also spoke a word of welcome, and reflected on 20 years of EDF and the achievements over the past decades, such as the achievement of EDF to be involved at European policy-levels, and the recent negotiations about the European Accessibility Act.
Mr. Luca Juhier, president of Group 3 (various interests) European Economic and Social Committee, spoke about European developments from a policy perspective, and highlighted the important role EDF plays in ensuring the rights of persons with disabilities in Europe.
Ms. Marianne Thyssen, European Commissioner for Employment, Social Affairs, Skills and Labour Market, also highlighted the important role of EDF at the European policy level.

Then the EDF Annual General Assembly business session started, led by Yannis Vardakastanis, EDF president. After the roll call and the adoption of the agenda, the election procedures started by electing a Scrutiny Committee (to count the voting ballots). There was only 1 candidate for the position of EDF president, and this was adopted very fast by acclamation. So Yannis Vardakastanis remains EDF president for another term. Then all EDF members with voting rights: European NGO’s (ENGO’s), National Disability Councils, and Ordinary Members were asked to fill in the voting ballots, and submit the ballot in a closed envelope in a box at the back of the meeting room. This procedure took place during the coffee break, which got extended to enable all votes to be collected. It was a bit chaotic and exciting. I was a candidate for the position of EDF Board Member on behalf of ENUSP, the European Network of (Ex) Users and Survivors of Psychiatry, and of course I hoped to be elected.

After the coffee break and the election procedure, the AGA continued, while the votes were being counted in a separate room by the Scrutiny Committee. The Financial Issues were presented, such as the overview of the accounts and budgeting, as well as activity reports, and several official declarations that were to be issued by EDF after adoption by the EDF AGA.

Then the results of the EDF Board elections were presented, which gave quite some excitement in the room. I was happy to hear that I was elected into the position of EDF Board Member for ENUSP. It felt great to be given this role to put the rights of persons with psychosocial disabilities at the European agendas via EDF. So I was really happy. After the elections, the lunch break started, with a joyful vibe and many congratulations to the newly elected Board Members.

To find out who else was elected in the Board of EDF, see the press release of EDF here: http://www.edf-feph.org/newsroom/news/edf-elected-its-board-directors

During the lunch break, I went to see the deeply moving photo exposition of CERMI Women’s Foundation, comprising a series of powerful images to expose and combat forced sterilization of women with disabilities. Please take a moment to see the exposition: http://www.cermi.es/es-ES/Paginas/Photographyexhibition-Nomoresterilisations.aspx
I was very deeply touched by these pictures. I felt connected. My gender experiences had also been disrupted by “health care”, although not by forced sterilization, but by degrading forced body cavity searches (https://tekeertegendeisoleer.files.wordpress.com/2016/10/personal-testimony_-gender-interrupted-by-forced-psychiatry.pdf ). It is so deeply disturbing and truly upsetting that forced sterilization even exists!! I can only hope that together we can make all of the violations stop. It has to stop. So let’s unite and put this to a halt NOW!

So please help to raise awareness, and share the link of the photo exposition of CERMI Women’s Foundation, against forced sterilization: http://www.cermi.es/es-ES/Paginas/Photographyexhibition-Nomoresterilisations.aspx

After the lunch break, at 14.30, the AGA continued with a conference session titled: 20 years later: Building an inclusive disability movement for the future.
Again there were several speakers, such as Yannis Vardakastanis, EDF president, who reflected on 20 years of EDF, and shared his thoughts about the further development of EDF in a changing European landscape. He stated that we should firmly push for the Europe we want. There is no compromise, since inclusion and human rights for ALL is in fact a yes-or-no question. We cannot leave anyone behind.
Alberto Duran Lopez, ONCE Foundation executive Vice President, and CERMI General Secretary, spoke about innovative models of collaboration, and the new challenges of the disability movement facing a global world. He mentioned the EDF- Madrid Declaration of 1997, which was a milestone in EDFs past, and which will now be followed up by the new EDF- Madrid Declaration of 2017. The current Europe is taking steps backwards when it comes to welfare and supporting people’s needs. Strong actions are needed, for example to push for non-discrimination, accessibility, political participation and de-institutionalization.

This was followed by a Round Table session: 1997-2017, Twenty years fighting against disability discrimination.
Helga Stevens, Member of the European Parliament gave an overview of the role of the European Parliament, and elaborated on the historical developments since the Treaty of Amsterdam, which mentioned non-discrimination already. She highlighted the importance of the EU Fundamental Rights, and the Concluding Observations of the UN CRPD Committee to the European Union in 2015, which all contribute to a better understanding of rights and EUs responsibilities. The legislation on Passengers Rights and Website Accessibility are concrete achievements, and it is important that policymakers, such as MEPs, are not taking a short-sighted view on “costs” but actually see the benefits of inclusion, which is eventually much more sustainable.

Ana Pelaez Narvaez, UN CRPD Committee Member on the Rights of Persons with Disabilities 2008-2016, spoke about the CRPD as a catalyst for the development of the Disability Movement in Europe. She highlighted how the movement gained momentum with the negotiations of the UN CRPD, when it was important to develop a strong unified voice, and all voices across the disability movement were needed. IDA (International Disability Alliance) sprung from there as an inclusive movement advocating for the rights of all persons with disabilities. Ana highlighted the need to advocate for the rights of women with disabilities, including sexual and reproductive rights, illustrated with the campaign against force sterilization of women with disabilities, which happens every day in the EU. In Spain alone, there are over a 100 forced sterilizations per year, and even after the adoption of the UN CRPD, the numbers continue to rise. This is unacceptable, and has to be brought to a stop, and we need to stand up for that. Ana also highlighted her wish to see more involvement of young people in EDF, and the audience agreed on that. It was a very inspiring presentation.

The final speaker of the session was Bede Sheppard, Deputy Director of Children Rights Division Human Rights Watch, who spoke about the rights of persons with disabilities and the global Human Rights movement. She referred to one of the first reports of Human Rights Watch, about appalling situations in institutions in Romania in the ‘90s. At that time, the language and terminology wasn’t “developed”, and you can see in the report that they do not really know how to talk about it, although they clearly saw and felt that it was a true human rights issue at stake. By now, there is a universal human rights based language, as you can see in recent reports of Human Rights Watch, such as the report on “pasung” in Indonesia, Break the Chains: End Shackling in Indonesia https://www.hrw.org/breakthechains , or the report on children in institutions in Japan https://www.hrw.org/news/2014/05/01/japan-children-institutions-denied-family-life

There was some time for discussion, and then this very interesting session was closed.

During the following coffee break, there was a second round of voting (by ENGO’s only), because two Board candidates had an equal number of votes. Also, there was a meeting with a small working group about the upcoming meeting of the Council of Europe (CoE) Committee on Bioethics on 7 June, where the Draft Additional Protocol to the Oviedo Convention would be discussed, and the Draft Additional Protocol “on involuntary treatment and involuntary placement” goes against the UN CRPD standards. Participation to oppose this development is very important for ENUSP and several other organizations. EDF has the possibility to send a delegation to this CoE meeting, and on behalf of ENUSP, I can be part of the delegation (but EDF cannot afford the expenses for each delegate, so we have to use other resources for that). I agreed that I would be part of the EDF delegation to go to Strasbourg for this meeting on 7 June, and we will ensure a balanced representation by further email contacts among the EDF working group.

This is a milestone for ENUSP, since the CoE standards are really posing a barrier for the human rights of persons with psychosocial (and intellectual) disabilities in Europe (as ENUSP has stated before, see: https://www.youtube.com/watch?v=UIJpFjLbuqI ) - and the Council of Europe-processes are not so easily accessible for European NGOs and DPOs, but via EDF, there is now an opportunity to speak out at this meeting directly, and hopefully to stop this Draft Additional Protocol, as it is incompatible with the UN CRPD, and already subject to a lot of criticism, including from the Council of Europe’s own Parliamentary Assembly, http://assembly.coe.int/nw/xml/XRef/Xref-XML2HTML-en.asp?fileid=22575〈=en , which advised “the Committee on Bioethics should withdraw the proposal for this additional protocol and instead focus its work on promoting alternatives to involuntary measures in psychiatry in accordance with the spirit of the CRPD.”


After a coffee break, several GA-resolutions were discussed, and the report on Ending forced sterilization against women and girls with disabilities was adopted. Around 18.00 the conference ended, and we had some time to refresh ourselves for the evening program.

At 20.00 we were picked up by busses to visit the famous Prado museum in Madrid. We were given a guided tour and saw some famous artworks. I especially liked Heronimus Bosch and a bronze statue of Sleeping Hermaphroditus. Many other artworks contained too much violence in my opinion. At the end of the guided tour, there were snacks and drinks in the lobby of the museum, surrounded by statues of muses. I had a nice evening, chatting to a lot of nice people, and receiving many congratulations for my election as a Board Member for EDF.

Around 23.30 busses took us back to the Ilunion Hotel, and again, 3 of us ended up in my “boudoir” in my room, where we again had great fun and some midnight treats. Eventually, I went to bed with a big smile on my face. It had been a great day of inspiring company and successful elections. I was happy.

*
On Sunday 14 May, I had to get up early, since at 8.30 AM the first board meeting with the newly elected EDF Board would take place. The other participants could sleep a little longer, because the plenary AGA would only start at 11 AM.

During the Board meeting, the Executive Committee of EDF was elected. (see http://www.edf-feph.org/newsroom/news/edf-elected-its-executive-committee )

During the coffee break, the other AGA participants were arriving at the ONCE Sports Centre for the continuation of the thematic conference: 20 years later: Building an inclusive disability movement for the future.

Unfortunately, I had to leave to go to the airport, so I missed the second part of the thematic conference, with Nujeen Mustafa, a refugee with disability, and I would have loved to hear her speech (https://www.theguardian.com/world/2015/dec/20/nujeen-mustafa-interview-syrian-refugee ).

*
After arriving home in Eindhoven, the Netherlands, I had about 24 hours to prepare myself for my presentation in the Dutch Senate/ First Chamber against the law proposal on forced treatments. So I decided to postpone this report.

I am looking back at a great experience in Madrid. I had real fun with my colleagues, and I was successfully elected into EDF Board, and also gained an opportunity to speak on behalf of ENUSP at the Council of Europe. I have once again met many inspiring disability rights activist from all over Europe, and each of them pushes the awareness and implementation a bit further. In fact, they are all heroes. It is really great to be part of such an inspiring movement.