Final day of COSP 2016

Today, Thursday 16 June 2016, was the third and final day of the Conference of State Parties (COSP) to the UN Convention on the Rights of Persons with Disabilities (UN CRPD), which is a big conference of State Parties and Civil Society Organizations (NGOs and Disabled People Organizations (DPOs) to exchange knowledge on CRPD implementation.

I arrived at the UN headquarters just after 9 AM and I sat down with Salam Gomez, the other co-chair of the World Network of Users and Survivors of Psychiatry (WNUSP), to prepare our statement. We had been informed that there would be time for Civil Society to speak from the floor, to respond to yesterday afternoon’s Roundtable on the rights of persons with psychosocial and intellectual disabilities.

At 10 AM a plenary session started in conference room 4, a big room where all the State Parties to the Convention had a seat. Prior to the start of Roundtable 3, there were 20 minutes allocated for statements from civil society regarding yesterday’s Roundtable 2. The first speaker was Ms. Theresia Degener, CRPD Committee member, and she was fabulous as always, very strong and explicit against forced treatments and institutionalization, explaining that the CRPD does not allow this at all, and referring to the CRPD Committee’s jurisprudence, such as the General Comment on article 12 and the Guidelines on article 14.
When I was given the floor, I emphasized that Nothing about us without us, is one of the guiding principles of the UN CRPD, as stipulated in article 4.3. WNUSP is shocked to see that this still is not happening. It is now 10 years after the adoption of the CRPD, and we have already agreed, by virtue of ratifying the convention, that the meaningful participation of persons with disabilities in all matters that affect them is a must, from the design to implementation stage. Article 12 also gives us the right to speak for ourselves. We don’t want to be substituted. We want to be included and we want to be heard, and offer our knowledge to all processes.
I highlighted the 2-page statement made by Civil Society on the rights of persons with psychosocial and intellectual disabilities, which was circulated at the conference, and referred to the statement that Yeni Damayanti made in the opening session on behalf of civil society. She said: We are here. We need you and you need us. Don’t exclude us.
I also expressed strong support of WNUSP for the suggestion of New Zealand to take as next year’s overarching theme, the meaningful participation of persons with disabilities in all processes, including in the organizing stage of the next Conference of State Parties.

Salam Gomez added that in the past decade many practices show what can be done to remove stigma of psychosocial disabilities. It shows: Yes we can remove stigma, and yes, good practices exist. We have to move beyond addressing the violations, and we can demonstrate that an inclusive society is possible. We are part of the solution, and we have knowledge about good practices. It is important to build up new language to make clear what psychosocial disability and inclusion entails.

Several other speakers from various DPOs also spoke out.
Then the General Debate continued, and the Italian organizer’s approached me to discuss my criticism on the failed inclusion at certain sessions. This became quite a debate when I mentioned the article of Erveda Sansi, refuting the abolition of hospitalization. But the Italian government officials later informed me that they found the article “interpretative” and not based on real facts but “false”, - but I don’t think so.

When I walked back into the room, the Dutch delegation gave me a compliment on my statement, and I talked with them for a while, and asked if they had understood what Theresia Degener had said on the prohibition of forced interventions, which is in line with my Dutch campaigns against forced psychiatric interventions. The guy answered that he felt sympathy for our goal and passion, but didn’t think it was realistic, and he expected “we would never agree on this point” (which was extremely painful for me to hear, even though he was not the first Dutch person to respond like this). The guy seemed not to believe in change, and I wondered why he was delegated to the UN, which is all about change…. And besides that, there are many more things that are not yet proven to be realistic (building world peace, ending all hunger and poverty etcetera) and yet we do try to realize it. So I don’t understand why the guy already decided to reject to believe in innovation in this field, and that it would not be possible, and that we would never agree… It was devoid of hope and perspective. Quite narrow-minded…. It was painful, but I could let it go, because I had no big expectations of this guy anymore. I suppose he will be replaced within some time anyway.

The rest of the session was filled with another bit of the General Debate, where every State Party gets 4 minutes to present their status-update on CRPD-implementation. Followed by the Roundtable 3 on enhancing accessibility to information and technology and inclusive development. I just listened and did some other work until the session ended at 1 PM.

At 1.15 there was a side-event on the promotion of supported decision making mechanisms: how to implement article 12 of the UN CRPD, organized by the EU and the EASPD. It was mainly about the actions and strategies at the European level. It was explained that the EU does not have direct competence to legislate on legal capacity, but they can facilitate a soft approach, and use the open method of coordination at DG Justice to inspect legal capacity.

Yannis Vardakatanis of EESC and EDF stated that article 12 is the backbone of the convention, because legal capacity is needed for the exercise of all other rights. A failure to comply with article 12, is a failure to comply with the UN CRPD. It is important to be exact in what is needed. DG Justice is absent in the debate on legal capacity, while this theme needs to be put under DG Justice, because it is a justice issue. It is needed to exchange information on good practices, knowledge and political environment, laws and civil codes. Article 12 is not a moral issue, it is the backbone of the UN CRPD.

Klaus Lachwitz spoke on behalf of Inclusion International (II) and spoke about the II global report: Independent but not alone, which makes clear that assistance is not substitution, and offers an insight in some good practices. It has to be noted that no country has implemented article 12 yet, and in any country there is always a form substituted decision-making, often labelled as “last resort” or such term. The General Comment on article 12 offers guidance to the understanding of supported decision making. It is important to give self-advocates a voice. The newly elected CRPD Committee member of New Zealand, Robert Martin, a person with learning disability who was also involved in the drafting of the UN CRPD, will surely change and challenge the UN, which will have to take into account his needs. Persons with intellectual, psychosocial and neurological disabilities, including dementia and Alzheimer are often deprived of their legal capacity, and at the EDF AGA in Dublin recently, several reform models were presented.

Sabrina Ferraina of EASPD shared a Guide of promising practices on legal capacity and access to justice for persons with intellectual disabilities (AJuPID) and explained that EASPD initially didn’t pay much attention to the right to legal capacity, but the more they learned about it, the more they recognized the importance and the impact, and now there is more focus on this issue. Support must be based on the will and preferences of the person and not on the so-called “best interest”.

Imaculada Placencie Porrero of the European Commission spoke about what the EU is doing to make supported decision making a reality. Even though they have no legislative power over the issue, the EU still takes action to support adequate implementation of article 12. She pointed at the EU High Level Group on Disability (which concluded that more reform and exchange of information is needed), the EC Workforum on CRPD implementation, the reports of the EU Fundamental Rights Agency (FRA) on legal capacity. It is important to provide tools, support and methods for better understanding and better implementation, and to identify indicators to monitor the process and outcome.

Mr. Dimitris Nikolsky of the Council of Europe explained what he thought was needed for the implementation of article 12 in Europe: supporting dialogue and good clear cooperation of Member States, DPOs and NGOs, supporting Member States to change and improve legislation and good practices to change from substituted to supported decision making in a correct way, ask Member States to discover good practices. He stated: The European Court on Human Rights recently supported the right of persons with intellectual and psychosocial disabilities to decide on their own. We all have to work together, and there will be a dialogue in the next few years.

Then it was time for questions and answers, and I immediately took the floor, and made a firm statement. I said that I don’t think it is fair that the Council of Europe mentions all these actions that need to be done by Member States, without looking at the many things that need to be changed at the Council of Europe itself. I stressed that article 5.1.e of the European Convention on Human Rights (ECHR) still allows for the “deprivation of liberty of persons of ‘unsound mind’, drug addicts, alcoholics and ‘vagrants’ which is in violation of the UN CRPD. In addition, the Oviedo Convention on Human Rights and Biomedicine allows for involuntary treatment and placement of persons with ‘mental disorder’ who are ‘unable to consent’, which is absolutely a core violation of human rights. Every person, even babies can express their consent by laughing or by crying, every person can give signs and has ways to communicate. So the Oviedo Convention is unacceptable and needs to be withdrawn. Furthermore, the Committee on the Prevention of Torture (CPT) monitors places of deprivation of liberty, and checks against the European Convention, and they allow for forced psychiatry as long as 2 doctors are involved in the procedure. And last but not least, also the European Court on Human Rights checks complaints against the European Convention, and allows for forced interventions. And as a result of this all, Member States do not have a correct understanding of what is required, and they make for example reservations and declarations upon the ratification of the UN CRPD on “persons unable to consent” based on the Oviedo Convention, such as on article 15, in relation to medical experiments, for example for persons with Dementia and Alzheimer.

When will the Council of Europe change the European Convention on Human Rights (ECHR 5.1.e), the Oviedo Convention, and the standards of the CPT and the European Court on Human Rights, and ensure that Member States will never ever ever claim that some persons are not able to consent.
The Council of Europe was once the organization that successfully banned the death penalty from Europe, and it is time to do take similar action, because the situation is equally bad. The Council of Europe should issue a moratorium to stop all forced interventions, and secure our rights.

I got many positive responses from the audience and speakers during this session, who found it a good, relevant and well-articulated question. Klaus Lachwitz reiterated that person with psychosocial disabilities remain the most marginalized. If they need support, this will be in institutions, and even without consent, and we see that even 10 years after the start of the UN CRPD, there are still countries that have laws and even make new mental health laws that are in violation of article 12 and 14 of the UN CRPD. This affects millions of people in the EU.

Mr. Dimitris Nikolsky of the Council of Europe said he couldn’t answer my question, because it was related to another department, but he promised to forward the question to his colleages at the department. Of course I gave him my card.

At 2.45 the session ended, and I walked out, feeling very proud. I was overloaded with compliments on my intervention, and that made me feel really good.

At 3 PM I was back in the big room for the Dialogue on implementation of the Convention with the UN system: Celebrating the 10th anniversary of the adoption of the CRPD. I was sitting next to Alistair de Gaetano, and we talked about possible legal proceedings on my personal case in the Netherlands, and Alistair, who studied law, shared a lot of useful information with me. It was a kind of private workshop, and very interesting and helpful. But I missed most of what was said in the panel. I did hear several speakers reaffirming that forced interventions, deprivation of legal capacity, deprivation of liberty, torture and ill-treatment, and any treatment without the free and informed consent of the person is a violation under the UN CRPD and needs to be abolished.

At 6 PM the COSP ended, and it was time to say goodbye to many of the nice people I met. Afterwards I joined Salam to his hotel, One UN, opposite to the UN buildings, where we sat in the bar on the 30th floor for a while. Around 8 PM we went outside, where we met a lot of people who had also been at the COSP, and eventually Shuaib Chalklen invited me to join for a dinner at Sparks steak house together with 5 others (mainly of DPI Arab region). That was really nice. I had a really delicious steak, and a great evening, and fun. It was a good day :)
(and now it is really very very late at night, or early morning... I am off to bed now)