COSP day 2 and our side-event

Today, Wednesday 15 June 2016, was the second 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.

The day started very early for me.
At 8 AM I was at the UN headquarters to join the session of the American Psychiatric Association and the NGO Committee on Mental Health on: Making Sustainable Development Goals implementation accessible to persons with mental and intellectual disabilities. It was as expected, a very medical model oriented side-event, decorated with references to human rights. There were no persons with disabilities in the panel (in other words, they failed to practice the inclusion that they talked about). The need for “improvement of services” was stressed many times, and the Mental Health-Gap-programme was also mentioned quite some times, which basically implies to export the western psychiatric system to developing countries – which is not a good idea. Offensive language was used, such as “the burden of disease” , as if caring for one another is a “burden” that can be expressed in economic statistics, or as if certain human lives are too costly…. And we saw brain scans being presented, and references to drug addiction studies with rats. At the end of the session I made some firm remarks. I asked them if they had ever heard of the principle: Nothing about us without us, and I stated that it was unacceptable that they hadn’t included persons with disabilities in their panel. They answered that they had a video message from a person with disabilities, but they had run out of time to show it. I then said: How dare you prioritize yourself over the voice of users… And regarding the brain-scan presentation on addiction, I referred to the Rat Park study, which shows that rats in solitary cages may prefer drug use, but if you place the rats in more natural and pleasant circumstances, with company and “a life”, then they don’t prefer to take the drug-spiked water, but they drink the regular water. So the medical model of dopamine-addition is already refuted. And I finalized by saying I was shocked and upset that this session was not reflecting the CRPD and the human rights based approach, but was fully based on the outdated medical model. And I invited all 15 participants to join our side-event of Inclusion International, WNUSP and IDA, and stressed that this was fully run by persons with lived experience.
During the day, I got quite a lot of compliments for this intervention.

Shortly after the APA session, at 10 AM, our side-event on the rights of persons with psychosocial and intellectual disabilities, organized by Inclusion International, WNUSP and IDA, started in conference room D. Vladimir Cuk of IDA chaired the event and welcomed everyone. There were about 60 participants in our session. The room was full and some people were standing.

The first part was on persons with intellectual disabilities.
Fatma (Kenya), a parent of a daughter with intellectual disability highlighted the need to support families in their role of care-givers. In many countries the family plays a big role in the support for the persons with disabilities. Fatma shared 5 priorities for inclusion: inclusive education, inclusive communities, decision making, supporting self-advocates and supporting families. In many places, families are not supported and the persons with disabilities are still locked in the back yard. Doctors provide only medical and outdated information. What is needed, is recognizing the families as caregivers, supporting the needs, and building networks, financial support, access to services in the community such as education, health and social services. Inclusion needs to be learned froma young age. We must ensire that no one is left behind. We must do thing differently, not just open doors, but realize access to inclusinve education, health, poverty reduction and social services.

Mark (Kenya), a self-advocate with intellectual disability, gave an impressive speech, and stressed the need for inclusive education, so that abled and disabled children can develop together, and form an inclusive community. Self-advocacy starts with education, and it all starts at home, with the family. He has been supported since he was born, and this means that a member of the family provides support every day, such as in decision-making, inclusive education and self-advocacy. Inclusion International has published a global report on better education for all. If children with disabilities are included in schools, they are more likely to be included as adults as well. On the other hand, if children with disabilities are excluded from schools, the risk of exclusion as an adult is also very high. We have to break the barriers and build an inclusive community, where persons with intellectual disabilities can have meaningful relationships, get jobs, get a civil life. Then they are less likely to suffer from poverty. Persons with intellectual disabilities can be colleagues, employees, friends, spouses, parents, self-advocates, helpers and community leaders when they are included, enabled and supported. It is important to learn to communicate with the community, which is why inclusive education is very important. Invest in us, we are here. Independent does not mean alone. Having ongoing support needs is okay. Inclusion International helps to connect worldwide, shares good supportive practices and helps to ensure what is needed. Supporting families and supporting self-advocates is very important.

Then I spoke about the European situation for persons with psychosocial disabilities, and I explained that Europe has a long history of excluding persons with psychosocial disabilities in institutions, which is embedded in national laws and in article 5.1.e of the European Convention on Human Rights, and the Oviedo Convention. Last year the Council of Europe launched a public consultation on a draft Additional Protocol on involuntary treatment and placement for persons with “mental disorder unable to consent” (which is a total misconception, and a blunt human rights violation). It seems that this additional protocol is now withdrawn from the table, after pressure from civil society and others. Also last year, the review of the EU by the CRPD Committee took place, which led to the Guidelines on CRPD article 14. And last but not least, the EU has decided that the European Funds can no longer be used for funding human rights violation, and the European Funds can now only be used for CRPD-compliant practices, which seems a rather effective way to push the change.

Yeni Damayanti (Indonesia) of TCI Asia (Transforming Communities for Inclusion) gave a very firm speech about the situation in Asia, addressing the horrible practices of shackling and chaining and locking persons with psychosocial disabilities in goat sheds. The World Health Organization seems to think that pills are the solution, but they are not. She gave an example of a poor women, who gets 400 dollar per month as state support for psychiatric medication, while there is no support for her real needs, such as housing, income, job, understanding. Medication is not the solution. And the stigma is huge. Where other people get compassion when they suffer from for example a heart disease, for psychosocial disabilities, there is only stigma, fear and shame, for example when a person is on anti-psychotic medication. Persons with psychosocial disabilities are seen as incapable and have no right to say no to treatment. They also lose the right to inheritance, to vote, to have a bank account, and to be a citizen. The lack of legal capacity is the main problem, leading to many abusive and violent practices, such as forced treatment. In many parts of the world, psychosocial disabilities are not seen as part of the disability movement, but separated. Psychiatrists rule the life of persons with psychosocial disabilities. There is a lot of money for seminars of psychiatrists, but not for the user movement. And at these psychiatric conferences there are often no users invited, and psychiatrists talk on behalf of us. Which is exactly what we saw this morning at the APA-session. Also the first version of the UN DESA background paper was profoundly disturbing, but it is good to see that UN DESA opened up, and practiced the principle of Nothing about us without us, and they issued a revised paper after input from civil society.

There was quite some time for discussion, and we had 2 rounds of questions and answers.
The closing statement was made by Salam Gomez (Colombia), co-chair of WNUSP. He emphasized that there is a difference between psychosocial and intellectual disabilities, but in policies this is often conflated and mixed together. Adopting the word psychosocial disabilities is important, because it clarifies the difference better. In Colombia the term psychosocial disabilities is implemented in the law. We need to build a new cultural concept, psychosocial disability is not an illness, we have to be very clear on that.

It was a great session, there was large consensus in our session, and we were all very proud of our success.

Our session ended a little bit over time, around 11.45, and then Salam and I rushed to the 27th floor where we had a short interview with the Inter Press Service of the UN.

At 1.15 there was a side-event organized by the Permanent Mission of Italy on Mental health in the context of the 2030 Agenda: Moving from global commitment to local action. Salam was in the panel on behalf of WNUSP. Unfortunately this session was significantly more medical model oriented, again mixed with some human rights language in it.
For example, H.E. Sebastian Cardi, vice-president of the CRPD COSP, spoke about Italy, where Franco Basaglia since 1978 pushed for person centred care, and psychiatric hospitals should be closed or used differently. Treatment should be community based, and forced treatment should be used as less as possible (which is not the same as what the CRPD says: prohibition of forced treatments). Yet Italy seems to claim it is compliant with international standards, and already has 40 years of experience with community based care. As an example he mentioned sports and cultural activities for self-expression.
But we know that our WNUSP member in Italy, Erveda Sansi, has published a critical article, which explains that there are still people dying from forced treatments in Italy every year. And this knowledge puts the story of Italy in another daylight… (you can find the article here: https://absoluteprohibition.wordpress.com/2016/03/26/in-italy-we-dont-have-a-law-against-torture-by-erveda-sansi/ )
Also Theresa Di Fiandra spoke about Basaglia, and stated that Italy had completed the process of closing of the wards, and is now closing down the forensic psychiatric hospitals, and substitutes these institutions with community based facilities…
Again, also her story doesn’t match with the stories from the user movement, as the article of Erveda Sansi shows.
But I left it for what it was, hoping that maybe other State Parties would get inspired by the romanticized Italian storytelling…
Also Michelle Funk of WHO was present, and presented what WHO has been doing in the field of the UN CRPD, such as the Quality Rights initiative, and the Quality Rights Toolkit.
Gladly, Salam Gomez, co-chair of WNUSP, was invited to speak, and he addressed the issues of reasonable accommodation and training of everyone involved, legal capacity and supported decision making – and the lack thereof- , the issue of power, security personnel and police, imprisonment of persons with psychosocial disabilities, and the importance of CRPD article 8 Awareness raising, the segregation by mental health laws, and the need to see persons with psychosocial disabilities as a person, and the need to abolish forced treatment since it classifies as torture and ill-treatment, which is absolutely prohibited. Also the role of family, who can be supportive or a barrier. He concluded by stating that we, persons with psychosocial disabilities are entitled to have all rights on an equal basis with others.
There was some time left for questions and answers, and again, the medical model approach was obviously present in several questions. It was quite shocking to see that there is still so much awareness-raising to do after 10 years of the UN CRPD…

Then at 3 PM the Roundtable session on the Rights of persons with psychosocial and intellectual disabilities took place, organized by the PM of Italy. There was a bit of an overlap in the speakers of the side event of Italy.
First ms. Cataline Devandas, the UN Special Rapporteur on Disability gave a good speech, and addressed several key issues for the implementation of the UN CRPD.
Then Theresa Di Fiandra repeated her presentation on Basaglia and the Italian “de-institutionalization”, and several WHO and OECD programmes (medical model).
This was followed by an even worse presentation on “the 8 colours of the rainbow” where the speaker made derogatory remarks like “in times of disaster and emergency, persons with psychosocial disabilities don’t grasp the risk and don’t know when to run, so they are at risk”… and “for the development of indicators, we have to consult with states, because they will hav eto use the indicators” (he didn’t mention any consultation with users or whatsoever). It was terrible, especially because this was at the Roundtable, which was in the big main conference room, which offered seats for all State delegations, and quite a lot of State Parties were present. They got misinformed by the speakers, and we were somewhat powerless. I decided to make a firm intervention at the end.
Many others were upset too, and we even considered walking out as a protest, but we knew that there were 2 good speakers coming up at the end of the session, so we stayed.

Luckily, Paul Deany (Australia, Disability Rights Fund, and person with psychosocial disability himself) was also on the panel, and he delivered an excellent speech, fully in line with the CRPD and the views of WNUSP. He addressed legal capacity, liberty, torture, stereotyping as being dangerous persons, the problematic biomedical approach and overprescription of drugs, and the global push by the psychiatric industry, the fact that most mental health laws deprive rights, instead of upholding them. The chaining of persons with psychosocial disabilities in developing countries, and the user-driven projects that DRF funds
He added that as a person with bipolar, he knows that the biggest problem is not the condition, but the barriers in the communities, institutions and states.
Mark (Kenya), self-advocate, was the last speaker, and he repeated his presentation on self-advocacy and inclusive education which he made earlier in our side-event.

At the end of presentations, I immediately raised my hand to make an intervention, but the State Parties got the floor first, and then there was no more time for responses or questions by civil society. This was very disappointing. The State Parties were misinformed, and we didn’t even get the opportunity to respond to that. It was a disaster, because State Parties may now implement or continue the wrong things, because they got misinformed at the COSP….
Obviously, the speakers should have been selected more carefully, in consultation with persons with disabilities.

IDA came with a great idea. They asked the organizing bureau if it is possible to have some time for the necessary responses from civil society, and there is a chance that this can happen tomorrow. I hope so. It is very important for the implementation of the UN CRPD, to have the correct information. So we have been informing and mobilizing civil society organizations (DPOs and NGOs) for this cause. We will see if it happens tomorrow.

After this session, Salam and I went to one more side-event 6 to 8 in the South Dining Room. However, I didn’t listen to the presentations, since I was working on informing and mobilizing our allies to speak out tomorrow. I enjoyed the nice buffet, and then I went back to my hotel.

It had been a long and exhausting day, again some disillusion, but I was feeling better and stronger than yesterday. Yet again, I am blogging till much too late at night, but I just wanted to have it sorted out before tomorrow. I hope I am not to exhausted tomorrow.
Good night!