COSP CRPD Day 1 – with side event on Mental Health

It has taken a while, but I am finally finalizing my travel reports of my trip to New York, 11-16 June 2017, where I participated in the 10th Conference of State Parties to the UN Convention on the Rights of Persons with Disabilities (UN CRPD), held at the UN Headquarters in New York. (also see the official website: https://www.un.org/development/desa/disabilities/conference-of-states-parties-to-the-convention-on-the-rights-of-persons-with-disabilities-2/cosp10.html )

The Conference of State Parties (COSP) gives an opportunity for all stakeholders to the UN Convention to meet and engage in dialogue and networking, to be informed and keep up with the latest developments, in order to foster and maximize the implementation of the UN CRPD in all participating State Parties.
The goal of my participation at the COSP was to bring the perspective of users and survivors of psychiatry / persons with psychosocial disabilities to the floor, on behalf of the World Network of Users and Survivors of Psychiatry (WNUSP, www.wnusp.net )

My travels to New York, 11-16 June, and to Galway 18-25 June, have been a very good experience, with very interesting events, meeting very nice people, and a lot of inspiration. My reports are relatively late, which has several reasons, as explained before. Nevertheless, finally here is my report of my participation at the Conference of State Parties to the UN Convention on the Rights of Persons with Disabilities (UN CRPD).

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On Monday 12 June 2017, I joined the Civil Society Forum, also see my previous blogpost: http://punkertje.waarbenjij.nu/reisverslag/4990642/report-of-civil-society-forum-cosp-crpd

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On Tuesday 13 June 2017, Day 1 of the Conference of State Parties took place.
At this first day of the official COSP, I was going to participate in the side event on Mental health, human rights and alternative supports, scheduled at 15.00 in the afternoon. So it was an exciting day.

The opening session of the COSP started at 9.30 in the big General Assembly Hall, with an official welcome by several high level representatives, including H.E Mr. Georgi Panayotov, President of the Conference, Ms. Maria Luiza Ribeiro Viotti, Chef de Cabinet, Ms. Theresia Degener, Chairperson of the Committee on the Rights of Persons with Disabilities, Ms. Catalina Devandas, Special Rapporteur on the Rights of Persons with Disabilities. The overarching theme of the COSP was “The Second Decade of the CRPD: Inclusion and full participation of persons with disabilities and their representative organizations in the implementation of the Convention”.
The various sub-themes for the COSP were:
1. Addressing the impact of multiple discrimination on persons with disabilities and promoting their participation and multi-stakeholder partnerships for achieving the Sustainable Development Goals (SDGs) in line with the CRPD;
2. Inclusion and full participation of persons with disabilities in humanitarian action;
3. Promoting inclusive urban development and implementation of the New Urban Agenda (Habitat III).

The final speaker of the opening session was Mia Farah, Lebanese self-advocate of Inclusion International, on behalf of the International Disability Alliance (IDA). She gave a powerful and moving speech and made a strong call for action. It was a very inspiring and impressive contribution that really had an imprint on the day.

After this nice opening panel, the floor was opened for State Parties to deliver brief comments and statements, which resulted in a long list of over 60 speakers (3 minutes each), and their contributions were scheduled throughout the various plenary sessions during the days of the COSP. At the end of the list there was also room for Civil Society Organizations to sign up to make a plenary contribution.

After listening to a number of contributions from the State Parties, I decided to join a side-event on Media and persons with disabilities – How to change attitudes through media (organized by OHCHR, and the Permanent Missions of Brazil and Italy to the UN). Globo TV in Latin America shared their experiences with various forms of disability-awareness raising. A film actress shared her experiences of a role in a soap, where the character obtained a disability and the audience became engaged in her struggles, which resulted in a large impact on public opinions towards disability, with more understanding and awareness. The Italian organization Coordown presented a number of very powerful awareness video’s on Down Syndrome, such as “Dear Future mum” (see: https://www.youtube.com/watch?v=Ju-q4OnBtNU ) and “No special needs” (see: https://www.youtube.com/watch?v=kNMJaXuFuWQ ) I liked these videos a lot, and altogether, this was a very inspiring start of the COSP for me.

Then from 13.00 PM on, I joined a side event on Article 12: claiming the right to make decisions. The session started with an introduction to the framework of CRPD article 12 by Ms. Theresia Degener, chair of the UN CRPD Committee. This was followed by an interesting video and narrative about the development of a self-advocates movement in Israel, who made their self-representation in parliamentary discussions on law reform on legal capacity, supported by a facilitator who ensured reasonable accommodation and accessible information (such as Easy-Read versions). Self-advocacy by persons who are often deprived of legal capacity is revolutionary.
Another testimony which clearly highlighted the benefits of supported decision making came from a US-based self-advocate, Mr. Anthony Philips, from SANYS New York. He illustrated that the service coordination by professionals may sometimes fail due to certain unawareness, communication flaws and so on (especially cross-sectional), but by maximizing the agency of persons with disabilities themselves, simple mistakes can be easily prevented, resulting in more optimized services, as well as more independence for the person concerned.
Mr. Michael Stein of Harvard Law School Project on Disability then presented a research on various forms of supported decision making practices. And after a short discussion, the session ended at 14.30.

Then I had to install myself quickly for my own presentation in the joint side event on Mental Health, Human Rights and Alternative Supports, organized by CHRUSP, WHO, OHCHR and IDA.


* SIDE EVENT ON MENTAL HEALTH, HUMAN RIGHTS AND ALTERNATIVE SUPPORTS *
From 15.00 to 16.30, the joint side event on Mental Health, Human Rights and Alternative Supports took place, organized by CHRUSP, WHO, OHCHR and IDA. I had been invited to speak on behalf of WNUSP, and I gave a presentation on an alternative model to prevent coercion (The Eindhoven Model, based Family Group Conferencing), which I had presented at earlier events as well.

Ms. Diane Kingston, former member of the UN CRPD Committee, opened the session by highlighting some key questions: how to realize the full human rights in the lives of persons with psychosocial disabilities, how to ensure the implementation of the UN CRPD Committee’s Concluding Observations which call for an end to forced treatments and institutionalization.

Tina Minkowitz (CHRUSP) gave an interesting presentation on independent living supports to persons with disabilities in line with CRPD article 19. She highlighted crucial characteristics to define support, and shared her analysis of the Disability Integration Act (US law), which offers inspiration for legislating on inclusion. Yet the exact relationships and components regarding community based services for mental health and psychosocial wellbeing still need to be explored further.
Tina Minkowitz’ presentation and additional materials are available on the CHRUSP website: http://www.chrusp.org/home/side-event-at-cosp10

Facundo Chavez Penillas (OHCHR) spoke about the development of the thematic report of OHCHR on Mental Health and Human Rights (A/HRC/34/32), which was requested by a resolution of the UN Human Rights Council in 2016 (A/HRC/32/L.26). The thematic report follows UN CRPD standards, and highlights the absolute prohibition of deprivation of liberty and legal capacity based on disability. A lot of efforts were made to identify a non-medicalized, human rights based conceptualization of “mental health” and “conditions”, which resulted in the starting point: “if one is not enjoying mental health or wellbeing, there may be a condition or disability/barrier”. The OHCHR thematic report on Human Rights and Mental Health (A/HRC/34/32) can be found here: http://ap.ohchr.org/documents/dpage_e.aspx?si=A/HRC/34/32

Facundo Chavez Penillas also highlighted several other important developments in the human rights field, such as the current discussions on how to develop and integrate mental health into the humanitarian agenda.
Also the current development of another European framework on “involuntary treatment and placement”, namely the Draft Additional Protocol to the Oviedo Convention by the Council of Europe Committee of Bioethics, is of very high concern, since such a protocol would go against the UN CRPD Standards. It is very important to bring the CRPD standards into these discussions.

Michelle Funk (WHO) spoke about the WHO Quality Rights Initiative, which comprises a package of training and guidance modules, developed by the World Health Organization (WHO), with the aim to bring an end to the human rights violations in the field of mental health care, by fostering the transformation into high quality services for mental health in line with human rights standards.
To assist stakeholders in the transformation process, 6 core WHO QR Training modules on Mental Health and Human Rights have been developed, with several advanced modules as well. Also, there is a WHO Quality Rights Assessment Toolkit, accompanied by 4 Guidance tools, which can be used to assess certain services. And also E-training modules are available, which are lighter versions, to enable a faster spreading of the knowledge to all stakeholders.
The first responses on the pilot testing are positive, and show significant shifts in attitude and human rights awareness after completing the WHO QR trainings. Further development of the WHO Quality Rights package is still ongoing.
All these tools and further information on the WHO Quality Rights Initiative can be found here: http://www.who.int/mental_health/policy/quality_rights/en/

Then I, Jolijn Santegoeds (WNUSP), presented on a practice of alternative support: the Eindhoven Model with Family Group Conferencing for supported decision making to avoid forced psychiatric interventions in crisis-situations in the field of mental health. In the Eindhoven Model, instead of executing undesirable interventions (such as forced psychiatric treatments), the aim is to identify a range of desirable solutions on an individual level by Family Group Conferencing. Basically, Family Group Conferencing is a voluntary consultation process around a key-question, with the persons of choice. Together they can find ideas to compose a plan which sets out which steps need to be taken, in order to answer the individual key question. (for more information, also see the text at: http://punkertje.waarbenjij.nu/reisverslag/4567654/presentation-text-on-eindhoven-model-cosp ).
While I shared an update on the developments of the Dutch pilot project with this model, I had to fight my tears for a moment, since this model has been ‘hijacked by professionals’ who have been medicalizing the model and language, which is very painful to me. Now I hope to find new allies to start a new, human rights based pilot project of the model with Family Group Conferencing to avoid forced psychiatric interventions.

Sera Davidow of the Western Mass Recovery Learning Community (RLC) started by sharing a personal testimony of her traumatic experiences, and how she felt initially unable to speak about her “odd experiences”. Joining a Hearing Voices group then changed everything for her. She felt safe enough to face her experiences, and started to understand how it linked to previous traumatic experiences. Where the traditional psychiatric approach is aiming just to get rid of those experiences (as if they have no meaning), the Hearing Voices Network gives a space and support to live through the experiences and to deal with them, to give a place to these experiences, without an assumption of illness.
Similarly, the crux of another successful project on “alternatives to suicide” is that it is not about traditional suicide prevention (not just a prohibition of these feelings), but it gives a space to give meaning to the self-destructive feelings and experiences, which can have so many reasons in life. It’s creating a space for those who may feel that they do not want to be in this world. This space can really help persons to be able to identify underlying topics and reasons for these feelings, and finding alternative ways to deal with it. Using force to stop each other is not an option. “Force is not an option, it’s a lack of options”.
The Hearing Voices networks, and the Alternatives to Suicide-networks are actually not at all rocket science. It is basically about being human together.

As a final contribution to this session, a statement made by Lucila Lopez (Argentina) was read out, since unfortunately she could not be there herself due to resource constraints. Lucila Lopez highlighted the role of personal assistance as a support for autonomous living of people with psychosocial disabilities. Without support in the community, de-institutionalization cannot succeed, and persons with psychosocial disabilities cannot choose to live outside institutions. In many places in the world, there is a lack of understanding and support for persons with psychosocial disabilities in the community, leading to stigma and discrimination, and a personal assistant can help to overcome these barriers in the community.

All the videos, presentations and other materials of the joint side event on Mental Health, Human Rights and Alternative Supports are available at the CHRUSP-website, see http://www.chrusp.org/home/side-event-at-cosp10

There was hardly any time left for discussion, so we offered to take the questions in the hallway after the session. There were mainly questions for further clarification.
Afterwards, we were all satisfied. We had formed a great team together with a clear unified message. It had been a very good event.

After this session, “when the big job was done”, I was quite tired, so I first took a break (missing a session). I went outside for a walk, even though it was extremely hot in New York these days. I bought myself a nice ice-cream made from frozen mangos, which was really delicious, and then I returned to the UN building to join the final session of this long first day of the COSP.

* DISCUSSION ON GENERAL COMMENT ON CRPD ARTICLE 19 *
From 18.15 to 20.00 PM, I joined the side-event: Towards a Draft General Comment on Article 19 UNCRPD. It was a very interesting discussion, which is hard to summarize considering the level of legal details. So by now, I will skip that summary, since the General Comment on CRPD Article 19 came out last week, and is available on the CRPD Committee’s website: http://www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPDIndex.aspx


It was a very long day, and afterwards I was very tired. I took a brief walk outside, heading to Times Square, but I was actually too tired to enjoy it. So then I grabbed a Subway menu, and took the metro back to my hotel again. After doing a few emails, I wrote a few lines for my blog, but then again I decided I was too tired to finish it. I knew that several busy days were coming up, so I thought it would be wise to go to sleep, and so I did.

It had been a great first day of the 10th Conference of State Parties to the UN CRPD.