2 meetings in Brussels

1. EC Follow up on CRPD Concluding Observations

Yesterday, Monday 26 October 2015, I travelled to Brussels for an afternoon meeting with the European Commission DG Employment, for an informal discussion on the follow up to the recommendations of the UN Committee on the Rights of Persons with Disabilities that were issued to the EU in September 2015 (UN CRPD Concluding Observations on the EU).

I arrived in Brussels with a delay of over 1 hour, due to a broken train on the track. Therefor I missed the first hour of the meeting and I sneaked in around 3 PM. There were about 20 people in the room, and most of them I already knew as representatives of European NGOs/DPOs. They were sharing their opinions and ideas on what needs to be done to implement the recommendations of the UN CRPD Committee at EU level. I listened to the dialogue, and waited for my turn. It was quite interesting to hear the suggestions for EU action by the various organizations. It’s a really a pity that I missed the start, so I don’t have a full overview.
The delegation of the European Commission’s DG on Employment was not able to give a substantial reply right away, because they need to discuss it within the European Commission first. There is nothing decided yet regarding follow-up actions. In response to the ideas of civil society, the EC-delegation repeatedly said they “took note of it” and that they “will discuss it with the various bodies in the European Commission”. I felt like nothing had changed since the UN recommendations had come out, and I feared that the European mechanisms would keep on claiming that they lack power/competence on our issues, and they “will see what they can do about it within the margins”. As if the European Union is powerless, and as if we should be satisfied with marginal attention, while so many persons with psychosocial disabilities in the EU are suffering from a wide range of human rights violations. That frankly upset me, so when it was my turn to speak, I made a firm intervention:

I explained that, so far, none of the European Member States have restored the right to liberty of persons with psychosocial disabilities on an equal basis with others. And none of the European Member States have abolished substitute decision-making, and none have banned forced psychiatric interventions by law. Instead, the European countries maintain laws, or create new laws, authorizing these practises, and so far, the European Union shows no resistance to these law reforms contrary to the CRPD by its Member States. Additionally, the EU shows also no resistance to international laws which allow for forced psychiatric interventions, such as the European Convention on Human Rights. Instead of resistance, the EU actually promotes these standards, since ratification of the European Convention on Human Rights still is a condition for EU-membership, and there is not even any declaration or statement of the EU to nullify article 5. And in practice, the existence of these discriminatory domestic and international laws prevents us, persons with psychosocial disabilities, from accessing justice, since the forced psychiatric interventions are allowed under these laws and these practices are therefore not regarded as violations, while it is actually torture and ill-treatment. So altogether, in practice we have no rights and no access to justice. And I can tell you from my personal perspective that the lack of access to justice is a very heavy burden. As an illustration: I was long term solitary confined as a child, in the Netherlands (a country that most consider as ‘very nice’) , and now I am trying for about 20 years to get access to justice, I tried even at Ombudsman and Ministry and at UN level etcetera, but I still haven’t succeeded, not even an investigation. This hurts so much. It is really a burden. This kind of practices need to change. We want our rights. So why is the EU not taking action against the widespread human rights violation on persons with psychosocial disabilities in the EU? Why no action against forced interventions, against domestic and international laws that allow torturous practices, against the lack of access to justice?
It seems that the EU constantly claims they have no authority over our main issues, such as liberty, freedom, justice, legal capacity or quality of care in EUs Member States, and they claim that they “cannot” take actions against forced psychiatric practices and the widespread related injustices and human right violations inside the EU. And even despite the UN CRPD Committee recommendations, which clearly recommend to the EU that they should ‘take all possible actions to ensure liberty and security of all persons with all types of disabilities in line with the Guidelines on article 14’ , and despite the fact that the EU claims to be funded on the core values as ‘respect to human rights, freedom, equality and justice’, they still claim they cannot act against discriminatory deprivation of liberty and this type of injustices in Member States, leaving many thousands of EU citizens unprotected for the sake of European own-made system of agreements. It looks like the EU finds bureaucratic agreements more important than our human rights? This is simply not acceptable. Action is needed. Real change is needed. The EU should take leadership, and the competences should be reconsidered in order to protect the rights of persons with psychosocial disabilities. The CRPD clearly calls for change, and we really want to see change. EUs ratification of the CRPD should also have meaning for us, persons with psychosocial disabilities, otherwise there is no real hope for us in this European process.”

After my intervention, there was a bit of a silence. (probably due the intensity of my plea, and possibly because I approached the subject out of the box). Then Ms. Cabral, head of the EC-unit for the rights of persons with disabilities, responded by reaffirming their good intentions to see what they can do about it, and she acknowledged that these were important issues, and then she added “but maybe not everything can be solved at EU level”.

I immediately raised my hand and stated: it is unacceptable that the EU uses bureaucratic excuses (such as “lack of power”) instead of acting against torture and ill-treatment by forced psychiatry in Member States. Bureaucracy is not a valid argument to allow torture. Torture and ill-treatment are absolutely prohibited and there can be no excuse at all. It just needs to stop and action is needed.
I then asked to her directly: Is there any hope for us in this process? Or is the energy and input in vain because of the lack of competences?
She said there is hope.

And then the meeting ended. It had been quite intense for me. I got some compliments on my intervention from other participants, and Annalisa Cottone from the European Commission’s unit for the rights of persons with disabilities proposed to have a talk about these issues on Thursday 29 October, when I will meet her again at a conference on CRPD article 12 in Paris. That is great. It gives me hope again.

After the meeting, I went along with some others (MDAC and Autism Europe) to have a drink in a bar, and then we dropped off our bags at the various hotels, and walked around in the centre of Brussels together, checking the chocolate stores, and having a belated but nice Belgian dinner with mussels and fries. I really enjoyed the evening, and I returned to my hotel a little bit late, so I decided to postpone blogging, since I would have more time the next day, and I was tired. So I went to sleep.


2. Discussing the Draft Additional Protocol to the Oviedo Convention at OHCHR Europe

The next day (today), Tuesday 27 October 2015, I had another afternoon meeting in Brussels, at 14.30 at the UN OHCHR regional office for Europe, to discuss a strategic response to the Draft Additional Protocol to the Oviedo Convention on Human Rights and Biomedicine (made by Council of Europe). It was a small informal meeting of just over an hour with Jan Jarab and 3 staff from the OHCHR Regional Office for Europe, Oliver Lewis (MDAC) on the phone, and Alva Finn (MHE) and me (ENUSP) in person. We discussed how to approach the Draft Additional Protocol to the Oviedo Convention, and we decided that we will aim to prevent the adoption of this Additional Protocol, since it won’t bring any benefit for any party at all. So each organization will respond to the public consultation that is launched by the Council of Europe on the Draft Additional Protocol to the Oviedo Convention (see http://www.coe.int/en/web/bioethics/-/public-consultation-on-a-working-document?redirect=http://www.coe.int/en/web/bioethics/psychiatry?p_p_id=101_INSTANCE_mUCQzOkGjpPx&p_p_lifecycle=0&p_p_state=normal&p_p_mode=view&p_p_col_id=column-4&p_p_col_pos=1&p_p_col_count=2 ) And we will also work on a joint statement, which all needs to be done before 15 November 2015. It was a pleasant and constructive meeting, with a nice harmony of opinions, and an inspiring level of ambition. Real goals, real hope and real actions. That is inspiring. I can’t help to notice the difference with yesterday’s meeting on the EU trajectory of CRPD implementation, which excels in the absence of any real ambitions on the rights of persons with psychosocial disabilities (which is something that really causes me to doubt whether I should put my energy there at all, since we need REAL change).

Anyway, after this meeting, I walked around a bit more, again searching for a place with wifi where I could work. Then eventually I needed a power-socket, and I decided to go to the train station quite early, where I charged my laptop with my own renewable energy (cycling on a machine to generate power – although it didn’t really work, it was nice to be a bit active). Then I took the Thalys train to Paris Nord (with a power socket on board) and there Stephanie, my colleague in ENUSP, picked me up and we spend the evening together, driving past the main touristic attractions such as Notre Dame, Louvre, Opera, and the Eiffel Tower exactly on the moment that it started sparkling lights!, and we had a delicious typical French meal at Ile Saint-Louis, with absolutely delicious ice cream (Halloween flavour and Raspberry with rose) and talking about all kinds of things. I really enjoyed this great evening with Stephanie in Paris. It was already late when Stephanie left me at the hotel, but I still decided to finish this blog before going to sleep, because tomorrow a new conference starts, and I don’t want my head to get too full. So it’s offloaded now, and now I am ready for the next part of this week. Good night!