EDF Board meeting in Tallinn

From 6-9 October 2017 I went to Tallinn, Estonia, to participate as a Board member of EDF in the Board meeting of the European Disability Forum (EDF) on behalf of the European Network of (Ex) Users and Survivors of Psychiatry (ENUSP, www.enusp.org ). Estonia is currently holding the presidency over the European Union, and EDF Board meetings are generally held in the country which holds the EU presidency. So this time EDF Board meeting was in Estonia.

I arrived in the Park Inn Hotel in Tallinn on Friday 6 October in the afternoon, and then I had a free evening which I used for some exploring. Initially I got a bit lost in the city, but eventually I found my way back to the hotel, where I met some other participants and had a nice time, before going to bed on a reasonable time since I hadn't had much sleep before the trip.

On Saturday 7 October 2017 at 9 AM the EDF-meeting started in the Park Inn Hotel, with a thematic conference on the European Accessibility Act.
The European Accessibility Act is a proposed European legislation on accessibility across Europe, and is very relevant for persons with disabilities, who often face inaccessibility in the community, which prevents participating equally and enjoying human rights on an equal basis with others.

At 9.30 AM we were welcomed by Monika Haukanomm (Chair of Estonian Chamber of Disabled People, EPIK) who opened the conference, and Yannis Vardakastanis (EDF president), who gave an introduction and update on the process of the European Accessibility Act, which is currently on the agenda of the European Parliament, so there is important work to do on the national and international level, such as lobbying with Members of the European Parliament and the Permanent representations of the various EU countries, to raise their awareness on the importance of accessibility and the rights of persons with disabilities.

At 10 AM there was a session where 3 groups reported back on their findings of a study visit on accessibility in Narva, Estonia (near the Russian border).

I will highlight some points here:
There is no unified definition of accessibility, and very often accessibility is narrowly understood as only physical accessibility (such as buildings), but it comprises much more, for example accessible information (Braille, sign language, subtitles, easy-read versions) and accessible services (non-discrimination). Accessibility is a cross cutting issue in all aspects of life and communities. Accessibility is not an “add on’, but should be approached holistically, comparable to sustainability or gender equality.

In practice there is often a difference in accessibility between bigger and smaller municipalities.
Retrofitting of old buildings may not always be a realistic option, simply because costs or infrastructures may make this impossible. For example in Estonia, many buildings are old, and are not designed in an inclusive manner. Fixing this afterwards may not be possible in many cases (due to excessive costs or unsuitable infrastructures). Then it may be more effective to invest in personal budgets, so that for example, when someone is living in a inaccessible apartment “on the fifth floor without an elevator”, they could be enabled to move to another premise, instead of making costly adaptions to existing buildings that haven’t been designed for accessibility.
Investing in universal design (inclusive design, design for all) actually not only benefits persons with long term disabilities, but also other persons, such as those who may have a temporary injury, persons with baby-strollers, luggage, high weight or of old age.

Accessibility is actually a precondition for human rights, and costs cannot be a reason to NOT implement human rights. There is a need to share good practices to help Member States implement and ensure the right to accessibility (Article 9 of the UN Convention on the Rights of Persons with Disabilities).

After the coffee break, a panel discussion followed on: Way forward- how to proceed at EU level with Accessibility. Panellists were Ms. Inmaculada Placencia-Porrero (European Commission), Ms. Gunta Anca (EDF Secretary), Mr. Indrek Tarand (Member of European Parliament and Vice-Chair of the Disability Intergroup), Ms. Adina Braha-Hondiuc (Microsoft Accessibility policy chief for Europe, Middle-East and Asia), Ms. Helena Pall (Estonian Permanent representation at European Union) and Mr. Raivo Allev (Tallinn Social Welfare and Health Care Department).
It was a discussion/dialogue with the participants from the floor and the panellist.

While listening to the explorations of various details on accessibility in Europe, I felt it would be useful to make my own analysis on accessibility from a psychosocial disability-perspective. So during this session I was thinking about accessibility and psychosocial disability, analysing what would be the features of psychosocially-accessible and psychosocially-inaccessible communities.
I listed features for “psychosocially-inaccessible communities” : not speaking out, no understanding, stigma and fear, exclusion, no support, no information, no awareness, risks when disclosing disability, discrimination, isolation, loneliness and abandonment, no skills for good support, a mono-culture, psychiatric jargon causing distance and misunderstanding, segregation, solitary life and individualism, and growing despair and escalations.
And on the other hand, for “psychosocially-accessible communities” I listed the opposite features: speaking out safely, being understood, no fear or stigma, inclusion, support, information and awareness, no risk when disclosing disability, no discrimination, not alone, not abandoned, skills for good support are present, culture of diversity, understandable language and conceptualization, no segregation, forming a community together, and prevention of despair and escalations.
So psychosocial accessibility is mainly a cultural issue.
I also thought about the difference between the general situation (general culture) and specific local situations (e.g. in families/private life), since ‘psychosocial (in)accessibility’ and (not) having a safe space to speak out can be a very local experience. So there are 2 levels to accessibility: General psychosocial accessibility would mean to remove social barriers and lift the mono-culture from the ‘dysfunctional society’. And in individual situations there can be additional local psychosocial barriers (for example in a ‘dysfunctional family/ relation/ private life’) leading to a certain specific or unique inaccessibility at the local/individual level.
(If anyone wants to share any thoughts on this, feel free to leave a comment below this post)

Some remarks from the panel discussion really stuck with me, for example on the issue of sign language throughout Europe. It was said that already in the early 90s there has been European standard stating that sign language interpretation needs to be provided (V18-standard), but it was never fully implemented. Now the call is made for legislation via the European Accessibility Act.
(yet apparently, implementation seems to be a real problematic issue across the EU. I think that would need explicit attention).

Around 12.45 the thematic conference ended. It had been interesting.
During and after lunch time, the participants of the thematic conference left, and only EDF Board members (and Observers, EDF staff, assistants etcetera) returned to the conference room.

*
After lunch, at 14.00, the EDF Board meeting started with the adoption of the agenda and the review of the activities in 2017.

The next topic was the EDF campaign on political participation in view of the European elections 2019. Krzystof Pater, rapporteur of European Economic and Social Committee (EESC) spoke about the EESC report on the right to vote. He highlighted that persons who are deprived of their legal capacity are in a number of EU Member States prevented from voting, either automatically based on their status, or on a case by case ‘assessment’, - either way is discrimination, and in violation of human rights and core political principles, such as democracy and equal treatment. The right to cast a vote, and the right to active political participation can be distinguished as aspects of the right to participation in political and public life (Article 29 of the UN Convention on the Rights of Persons with Disabilities). All EU citizens should be able to participate in the European Parliamentary elections in 2019, including persons with disabilities.
This poses practical challenges in many ways. For persons with psychosocial disabilities in Europe, the deprivation of legal capacity and voting rights is one important barriers. Also, persons in institutions, especially those deprived of their liberty, may not be able to access voting stations (prevented by bricks and rules, and a lack of support to vote, which is actually discrimination). Furthermore, information should be accessible, including in Braille, sign language, easy-read/easy-to-understand and so on, and be made available, excluding nobody! And also the voting procedures need to be accessible, and some innovative examples were presented, including Electronic voting which can provide easy access to persons with certain disabilities e.g. physical – while others e.g. persons with intellectual disabilities or dementia may experience barriers in that mode. The need to respect diversity is evident. Excluding persons from (executing) the right to vote is discrimination.

The right to political participation can be a powerful topic to raise awareness amongst politicians on the importance and meaning of the human rights of persons with disabilities. And obviously, awareness of politicians is highly important for the full implementation of the UN Convention on the Rights of Persons with Disabilities in Europe. So the right to political participation is used as an entry point for advocacy at the political level, and EDF will launch a campaign to raise awareness on the right to political participation of persons with disabilities, in view of the European Parliamentary elections of 2019.
It was an interesting session.

The next topic was the 4th European Parliament of Persons with Disabilities, which will be organized in Brussels in December 2017, and actually, the details on the procedure for participation is quite confusing/complicated. I was listening to get more clarity.

Yet then, I suddenly received an email from my Dutch lawyer, about my personal case (criminal proceedings as a victim of human right violations by forced psychiatry). When I noticed the email, I was immediately distracted from the meeting, so I stepped outside for a moment to check: It was a formal summary of the proceedings under Dutch criminal law regarding my case, where the Dutch court decided to reject to investigate my accusations of severe abuse and deprivation of liberty by forced psychiatry. The words of the Dutch court still hurt me deeply, even though I already knew their position. (and I am already working on next steps. This battle for recognition, change and compensation isn’t over yet).
I didn’t read all of it. I took a deep breath, and went back into the meeting which was about to end.

After another coffee break, at 17.00 PM, there were 2 parallel sessions. I joined the EDF-Human Rights Committee. One by one we shared the actualities of the advocacy in the national contexts, identifying commonalities, priorities and overarching issues, in order to strategize further actions of EDF. It was very interesting to hear what is going on in various countries and on various topics.

At 18.30, the parallel meetings ended, and we were all invited to join a Reception arranged by the Estonian organization that hosts the EDF-meeting: EPIK. Their office was located very close to the Park Inn Hotel, and they had arranged for a buffet with various bites and a drink. It was really very cosy and I had a good time with the EDF-colleagues. It’s really always inspiring to meet each other. It’s so nice to have this huge level of mutual understanding. I enjoyed a great evening.

Afterwards I walked around to find a shop (again getting quite lost in the Old Town – and the shops were closed already). After quite a walk, I was back at the hotel, and had some more social time with EDF-colleagues. I went to bed rather late.

*
Sunday 8 October, the second part of EDF board meeting took place during the morning.
Again we started at 9 AM (although I was a little late).

First the working groups (EDF-Human Rights Committee and EDF-Social Policy and Inclusion Committee) shared their highlights and key findings, which was a long list covering a wide range of topics (no summary here – it was an internal discussion).

Next, we discussed the impact of BREXIT on the rights of persons with disabilities, and the complexities and implications for citizens of UK, as well as for Ireland and Northern-Ireland. There needs to be specific attention for the situation and rights of persons with disabilities, since the new EU-border should not result in reduced rights or new barriers (such as reduced access to services due to the new borders).

The next topic on the agenda was: the development of a simple, useful, practical overview of EU legislation relevant to persons with disabilities (such as passenger’s rights, non-discrimination in the workplace, or the use of European funds). EDF is preparing a booklet.

We then went on to discussing (internally with EDF Board) the next steps regarding the proceedings of the European Accessibility Act, and on the use of European Structural Funds (You can search on the internet for the words “European Funds” and the name of a EU-country, to find out how the European funds are used in your country, and whether this is promoting inclusion and accessibility.
EU regulations state that persons with disabilities must be involved in the monitoring of the use of the European Structural Funds, so we should be heard when we speak out about this).

Finally, we also discussed the dynamics related to the Sustainable Development Goals (SDGs).
15 European countries are up for the next round of Voluntary National Reviews (VNRs) at the High Level Political Forum on Sustainable Development at the UN in New York (also see: https://sustainabledevelopment.un.org/vnrs/ ).

When we were requested to give an evaluation of the EDF-meeting, I highlighted that the EU is not the only body that is relevant for the rights of persons with disabilities in Europe. Also the Council of Europe plays a big role, and there are some very concerning developments at that level (notably the Draft Additional Protocol to the Oviedo Convention, which fully departs from the UN CRPD, and would be extremely detrimental to the rights of persons with psychosocial and intellectual disabilities in Europe). Yet unfortunately, during the EDF-Board meeting there has been no specific attention for the issues at the Council of Europe, while it is extremely important to strategize and act against this.
After this remark, EDF-executive members and staff came to talk to me, and they assured me that the issue of the Council of Europe will be on the agenda of the next board meeting (in Brussels). There will be a specific session on that.

Around 13.00 the EDF-Board meeting ended. Several participants left, and others joined a workshop on accessibility. I was free and had time to go into the city again. I then found out that I was missing my ATM-card (it must have been eaten by the ATM-machine at the airport). Luckily I had another ATM-card with me, so I could save myself.

In the evening I participated online in the board meeting of ENUSP, and afterwards, I met another hotel guest with whom I have been talking till late. It was very nice.

After a short sleep, I got up early today (Monday 9 October) to have the morning flight back to the Netherlands.

It has been a good meeting, and I have enjoyed visiting Tallinn.