WNUSP side event at COSP

Today, Wednesday 17 July 2013 was the first day of the 6th Conference of State Parties to the Convention on the Rights of Persons with Disabilities (CRPD).

At 10 AM the COSP was opened by the president of the Conference, mr. Macharia Kamau from Kenya. He mentioned the CRPD has the objective to protect and promote the rights of persons with disabilities. There are about 1 billion people with disabilities in the world. That is about 15% or 1/7 of the world population. Sustainable development should include the disability perspective in all processes. Mr. Kamau is also a co-chair of the Working Group on Sustainability, and inclusion is one of his core concerns; he has committed himself to conquering this issue. The actions and challenges that are being discussed at the UN should be taken home by the State Parties, whose task is to take action on the CRPD and sustainable development.

The second speaker was Danielle Bass from UN DESA, who read out the statement of the UN Secretary General. The focus of development should be on empowerment. Persons with disabilities were not protected. Now it’s time to realize the CRPD. Community Based Rehabilitation should focus on removing barriers and building capacity to empower persons who are excluded. Disability is a cross cutting theme and should be included in all issues. There will be a DESA forum: Dialogue on Post-2015 Development Frameworks and Disability, 19-20 July 2013. All participants are invited to join.

Then the assistant of the Secretary General Ivam Simonovis spoke about achievements, challenges and the way forward. It is needed to change laws, policies and programmes, but most of all the attitude towards persons with disabilities needs to change.

Then Yannis Vardakastanis from DPI and IDA made a powerful contribution on behalf of the civil society organisations (CSO’s). 80% of persons with disabilities live in developing countries, but they were absent in the Millennium Development Goals (MDG). It is good to see consensus that this group needs to be included now. And NOW is the time to mainstream disability in the development agenda. The post-2015 agenda mentions 5 major transformations as keys, and the first on is: Leave no one behind. We should all join forces to make this happen. He closed with a short poem: “Some live in darkness, some live in light. They are seen in the light, but those in darkness are out of sight. Now let the CRPD bring light.

Then a very long session started where many State Parties made a 3 minute presentation of their affairs and commitment. It was quite chaotic and I didn’t have translation, so I decided to finalize my presentation for the WNUSP side event.

I only took notes on the contribution from the European Union, which has also ratifies the CRPD, and counts as a Party. All of the European countries have ratified the CRPD, except for Finland, Ireland and the Netherlands. The EU has issued a declaration of competence. The EU 2010-2020 agenda is about a barrier free Europe. In 2013 they are working on legislative issues and access to services. The EU has various bodies which can help to fullfill article 33 (monitoring), such as the European Ombudsman, FRA, EDF and the European Commission. The EU frame is complementary to the national actions. By mutual exchanges between the EU, states, CSO’s, DPO’s and so on, we can learn. The EU is available and willing to share their expertise and experiences on national and EU development, including instruments for the implementation of the CRPD.

At 1 pm the session ended, but I left a little earlier, because I wanted to go to the side-event from 1.15-2.30 on Intersectionality between the Convention on the Rights of Persons with Disabilities (CRPD) and the Convention Against Torture (CAT) with relation to persons with disabilities.

The first speaker was Maria Soledad from the CRPD Committee. She spoke about the absolute prohibition of torture and cruel, inhuman or degrading treatment, and the duty under CAT to take every measure to prevent torture and cruel, inhuman or degrading treatment. Torture is identified by aspects as intent and purpose (such as confession or discrimination), and done by a public authority. Traditionally torture and cruel, inhuman or degrading treatment were seen as acts, but the definition is dynamic, and by now also negligence can be torture and cruel, inhuman or degrading treatment, such as when there is no pain relief at a surgery.
In the CRPD the torture definition is crosscutting. Discrimination based on disability can amount to torture and cruel, inhuman or degrading treatment, especially when it leads to cancellation of human rights. Discrimination is a clear interrelation between CRPD and CAT. Also denial of adjustments for inclusion (reasonable accommodation) is discrimination.
The Special Rapporteur on Torture emphasized that medical personal is not excluded from the torture framework, as they are also counted as public authorities, even in private clinics. Respect and dignity are key.
Persons with psychosocial and intellectual disabilities are identified as vulnerable groups at risk of torture and cruel, inhuman or degrading treatment. Failing to protect this group is discrimination and can be torture and cruel, inhuman or degrading treatment.
Also torture can affect other human rights, such as CRPD article 14: Liberty and security of person. Art 14 states that there can be no deprivation of liberty based on disability. The humiliation, and loosing freedom against one’s will amounts to torture and cruel, inhuman or degrading treatment. Torture also affects CRPD article 17: physical and mental integrity. Invasive surgery, ECT without consent or without anaesthesia, sterilization and abortion without consent.
So there is an interrelation between torture and the rights of persons with disabilities. It is important that anything is done FOR the rights of people with disabilities, and nothing is done AGAINST their rights. Free and informed consent is the key.
Maria then said: We need to find out which treatments are good and then give the info to people with disabilities so they can make a free and informed choice, conscious of the implications. (I think this suggestions of ‘selected treatments’ is still too much within the current margins of the system – I have another idea, which I presented in the WNUSP/DPI side event in the afternoon – see below)
Maria continued: CRPD article 12 says that all persons with disabilities should be recognized as persons before the law. If full legal capacity is acknowledged, there can be no substitute decision making, which is one of the most powerful ways to prevent torture. Legal capacity is not just signing contracts, but it’s about exercising your own will over your own life, in all aspects of full life. Then the person integrity and liberty is safeguarded, and also violence, abuse and exploitation can be prevented.
So the CRPD and CAT offer measures to eliminate torture and cruel, inhuman or degrading treatment. It is also important to investigate and repair violations, because otherwise it seems like it’s permitted, which is giving the wrong signal. Torture and cruel, inhuman or degrading treatment are absolutely prohibited and need to be eradicated.


Then Theresia Degener, law expert and CRPD Committee member gave a description of various articles of the CRPD and CAT, and then talked about the reporting guidelines and which information they ask from state parties.
Art 15: How are people protected against medical experimentation?
Art 16: How is exploitation, violence and abuse prevented, including gender and child sensitive approaches?
Art 17: How is integrity protected, especially regarding medical treatment, forced sterilization and abortion?
Art 14: How are liberty and reasonable accommodation ensured?
Article 12: how is legal capacity ensured? Is legal capacity restricted? Are there support mechanisms?
Article 25: How are people protected from discrimination in health care? Is there involuntary treatment?
Article 23: How is the right to marry and to found a family ensured? Are people protected from sterilization?
These indicators are useful to measure the implementation of the CRPD.

There are 7 Concluding Observations of the CRPD Committee so far: Argentina, Spain, Hungary, Paraguay, Peru, Spain and Tunisia. In these Concluding Observations it is said:
On art 15: forced treatment can amount to torture and cruel, inhuman or degrading treatment. (such as prolonged institutionalization, medical experimentation, degrading conditions in institutions, and forced sterilization)
On art 17: forced medication, sterilization, abortion, deprivation of legal capacity and family planning.
On art 14: forced institutionalization, prison conditions, correctional facilities for persons with disabilities.
On article 12: guardianship, denial of decision making and lack of support in decision making.
On article 25: inaccessible health care services, forced medical treatment, denial of care
On article 23: denial of parenting, forced abortion, sterilization and the right to marry

Persons with psychosocial disabilities are often victims of torture and cruel, inhuman or degrading treatment. Children with disabilities are specifically stigmatized. And also deaf, deaf-blind and people with cognitive disabilities are at risk. They need specific protection against torture and cruel, inhuman or degrading treatment.
So it’s not only CRPD article 15 which relates to torture and cruel, inhuman or degrading treatment. The other provisions too.
Once again: the best way to prevent torture and cruel, inhuman or degrading treatment is to acknowledge and ensure legal capacity.


The third speaker Mr. Grosman of the CAT-committee wasn’t able to come, so Macarena from the Washington College of Law took his place and talked about the Role of UN CAT. Originally the human rights were defined from a fully male perspective, and for example rape wasn’t included as torture or inhuman, degrading treatment. It was invisible until women started to raise awareness.
153 states ratified CAT, and the obligation to prohibit torture and cruel, inhuman or degrading treatment is non-derogable. Countries submit periodical reports to the CAT-committee, which reviews the periodical reports, and evaluates them by oral proceedings (including an NGO session) to identify issues and specific recommendations in the Concluding Observations. The CAT committee might request positive measures to be taken, on which the state report back in 1 year. The treaties set the norms, and the role of CSO’s is to expose any concerns or non-compliance of a state.
Macarena said: The CAT-committee has attention for psychiatric patients and has recognized torture of persons with disabilities in various country reports, such as Serbia 2011, Ghana 2011 and Russia. (I got really upset when I heard this, because many NGO-submissions to the CAT-committee on this issue have been partially ignored, so I prepared to ask questions about this.).
Macarena proceeded: Both Nowak and Mendez have addressed torture of persons with disabilities in their thematic reports. CAT and CRPD are a tool to investigate and identify practices of torture and cruel, inhuman or degrading treatment on persons with disabilities. The human rights treaty bodies support each other.
The general comment issued by the CAT-committee focuses on remedy to torture victims. If this is not done, it might be a sign of permission to torture or ill-treatment, which might even encourage the practice. The CAST committee has not received individual complainst of persons with disabilities yet, and they ask to bring disability issues to their table.

As soon as the floor opened up for questions, I raised my hand, and I made a remark. I questioned whether the CAT-committee has the right standards, because NGO’s in several countries have been submitting reports on torture of persons with disabilities, such as Norway, Czech Republic, UK, Japan and the Netherlands, but these were not recognized by the CAT-committee. It seems that in Serbia, Ghana and Russia the conditions of detentions were the basis to call it torture, but it is the institutionalization itself that is torture. There is a difference between the standards of the CRPD and the standards used by the CAT. Why does the CAT committee ask us to bring disability issues to their table, when they fail on us?

Macarena said that we should keep on trying. It might be improved along the way.
Theresia Degener added that this session shows that we are moving forward. The CAT and CRPD are together in a session on intersectionality, which shows that they all understand there is a clear link and it is necessary to connect the treaties. It is still the beginning, but it’s moving. The MI-principles are declared obsolete and should be repealed, but we didn’t discuss that yet at the UN either. The reports of the Special Rapporteurs on Torture: Nowak 2008 and Mendez 2013 are also moving forward. The realization of this side-event is the consequence of strengthening relations. We are on the right track, and this might even lead to a publication on the prevention of torture and cruel, inhuman or degrading treatment of persons with disabilities. And we are only at the beginning of identifying this issue. By now torture in the area of health care is identified, but there are more places, like in schools, in families and in the workplace. There is a lot to investigate. This is only the beginning and it can have a multiplying effect.
This is quite promising.


Then from 4.45 to 6 pm we had our WNUSP/DPI side event: “Transforming Communities for Inclusion of Persons with Psychosocial Disabilities”. About 40 people attended our session.

The opening was done by Shuaib Chalklen, the Special Rapporteur on Disability. He spoke about the variety of practices around the world. In eastern Europe, where positive examples can be found for a supportive open society, and closing institutions. In south east Asia persons with disabilities are kept in absolutely horrible circumstances: chained and caged. And in Africa, where the most armed conflicts in the world take place, such as the example of Congo, where women are raped and become refugees. What happens to those women. The inclusion of persons with disabilities was never discussed. It is good that WNUSP has a voice, and it is also equally important that the regions develop their own voice. The Pan African network of People with Psychosocial Disabilities (PANUSP) was established in 2011. And we hope other regions, such as Asia will also be able to organize their own voice.

Then Moosa Salie, co-chair of the World Network of Users and Survivors of Psychiatry (WNUSP) talked about legislative frameworks and persons with psychosocial disabilities. He explained the construction of WNUSP, and explained the major differences between the global North and the global South. In the North there is an extensice system of hospitals and sophisticated care, but people live institutionalized lives. In the global South there is a lack of system, which can be an advantage for the paradigm shift. People with disabilities in the global south face many barriers, exclusion, discrimination and stigma such as if being bewitched.
In the global North coercion is regulated by laws on forced hospitalisation and forced treatments. In the global South there is a lack of regulation, and many human rights violations happen outside the mental health setting, such as for example in prayer camps. If there are any mental health laws in the South, these are generally of the type ‘lunacy-laws’.
WNUSP states: if it’s not voluntary, it is not care. Forced treatment is a violation of human rights.
Mental health laws do not comply with the CRPD if they comprise forced treatment/forced hospitalisation, which is a violation of article 14,15 and 25 of the CRPD. It is strange that seclusion is allowed instead of sanctioned. Most mental health laws are based on the MI-principles, which are paternalistic, focussing on differences, discrimination and exclusion.
A CRPD compliant law should repeal forced treatments, and also repeal guardianship and substituted decision making. It should not regulate and facilitate human right violation but ban them. Therefore it is recommended to not make a separate mental health law, which creates a risk of ongoing discrimination..

Then Jagannath Lamichhane, WNUSP board member spoke about The Crisis of Identity: Where do we belong?
He showed us a picture of a young boy, who was half-dressed and chained in a kind of cage. This picture had been all over the media in Nepal and had caused debate about the treatment of persons with disabilities. The question is: Where do we belong? Where do we find justice?
If we go to the Movement for Global Mental Health, we will see that their objectives are to improve and scale up mental health services and promote human rights, which in this context will be explained as Health Rights. He will get a diagnosis and be labelled mentally ill. What will happen to the child? Will he be a child then, just as any other child?
WNUSP advocates for social justice and a human rights perspective, compliant to the UN CRPD, which states that human identity and dignity is unbreakable by a diagnosis and we have the right to live in equality.
Of course the boy is a child, and Child Right would apply.
If the child wouldn’t have had a psychosocial disability, the situation of chaining and caging would be unacceptable. But once the label of mental health is attached, all other needs are forgotten, and the child itself is forgotten as well. The only identity that remains is just a so-called “mental illness”.
Once you are labelled, you are no longer valued as a human, and it’s very hard to link to the momentum.
What is the identity of mental health users? Is the term mental health user just to advocate for human rights. But the word service user implies that there is a need for the services. It is a battle to belong to the broader disability movement.
The MDG and the post-2015 agenda addresses the right to education, but it doesn’t mention mental health. So where do we belong? In the movement of human rights, disability, gender, child rights? We belong everywhere, but we are invisible. It is to important to see who speaks for who. Is it the professionals? We have to remind you that we are real people.

Then I had my presentation on the Eindhoven Model – an alternative to forced psychiatry (based on Family group Conferencing). You can find the text of my presentation in the previous blog post.

Then the final speaker was Dorodi Sharma of Disabled People’s International, who spoke about Mental health advocacy & cross-disability alliances: Leaving no-one behind. Dorodi spoke about how most mental health laws are not compliant with the CRPD. Civil society organizations are often not aware of this. Now there is an international call to include persons with disabilities from the global South, but for example in India, persons with psychosocial disabilities have no legal capacity, and they are not perceived as a person. This creates numerous barriers for participation, even in consultation processes. How can their voices be included. Persons with psychosocial disabilities and their rights are widely neglected.
Then Dorodi showed us some very inspiring pictures of a cross-disability protest against the mental health law in India. People with various disabilities joined the protest to advocate against forced treatments. In this way the protest mobilized a very diverse group with many identities supporting the cause, all stating “This is my voice: no forced treatments”. This cross-disability support made it a massive and groundbreaking event. This was a very inspiring message.


There were only a few questions, and many participants expressed their compliments to this “clear and brilliant” session, and an “eye-opener” which was found inspiring and empowering.
Unfortunately I couldn’t manage to capture all of the questions and answers, because I could no longer postpone to go to the toilet.

This is what my colleague Moosa Salie wrote about the responses:

There were quite a few inputs from the audience reflecting issues of persons with psychosocial disabilities in different parts of the world: there was a question from Uzbekistan indicating their difficulty to understand the idea that a person with ‘such problem’ doesn’t have to go to see a doctor first and the question raised whether it is ok for family members to give consent in the place of person afflicted by illness. This showed how much work we still have to do in raising awareness on the paradigm shift. A DPI member from Jamaica referred to our presentation as an eye-opener saying her organization was trying to help a person with psychosocial disability. After being diagnosed, persons with psychosocial disability in Jamaica can’t vote or hold a bank account so she wanted to know if there is a policy to use as an international body to adopt the CRPD principles. She felt that the issues of persons with psychosocial disabilities are not really mentioned in the CRPD!

A DPI member from Burundi spoke about the reality of a nation where almost every person had lost a family member. His question was whether the whole nation is made of persons with psychosocial disabilities. This is very concerning point of view where what is obviously a natural process of mourning is pathologised. In his reply Jagannath pointed out that this is not about illness but ill social practices. I mentioned a user survivor movement in Rwanda where community counselors have been mobilized offering non-professional support so some good practices on how to deal with post-conflict trauma are coming from that part of the world.

At the end we had some feedback from Theresia Degener who was especially grateful for Jolijn’s presentation on the Eindhoven model which is based on Family Group conferencing as a model which provides support and help to people in psychososicial crisis which is an alternative to forced psychiatry. She said she found our presentations very helpful from the Committee’s perspective of working on recommendations on Art. 12. The Committee is looking for practical measures that they can recommend in the general comment on the Art.12. They want to send a strong message telling the world that it’s the central article of the CRPD in which the paradigm shift is exemplified. She mentioned a great input the Committee has already received from the WNUSP while working on Art. 12 and asked for information on more examples of practical alternatives to substituted decision making such as the Eindhoven model.


Quite some people requested a copy of my presentation, including Shuaib Chalklen, the Special Rapporteur on Disability and Theresia Degener, CRPD committee member. Of course I was proud of that. It was a good session.
Tired but happy.