Report of Civil Society Forum COSP CRPD

And now finally, here comes my travel report 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.

My travels to New York, 11-16 June, and 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.

*
On Sunday 11 June 2017, I travelled to Amsterdam in the morning, and after a good flight, I arrived in New York in the evening. I had been to a concert the day before, and I was still a bit tired, so I went straight to the Holiday Inn Long Island NYC hotel, and went to bed to have a good rest.

I knew I had to be well-rested and a bit careful, since it would be probably a heavy week. Last year I had found out that the Dutch State delegation could trigger my emotions quite easily. And I knew I was still emotionally loaded because of recent Dutch developments (disappointing Dutch law reform, no access to Dutch justice with my personal case, and a political absence of CRPD awareness). I didn’t want these emotions to come up, so I felt like being careful. I wanted to keep my mind focused, and not get into the Dutch issues too much (yet it was of course still present in the background for me).

*
On Monday 12 June 2017, the Civil Society Forum (CSF) to the UN CRPD took place at the UN Headquarters in New York. The Civil Society CRPD Forum provides an open forum for persons with disabilities and their representative organisations to discuss the full and effective implementation of the UN Convention on the Rights of Persons with Disabilities (UN CRPD), with particular regard to UN CRPD Article 4.3 and the foundation of the disability movement: “Nothing about us, without us”.

I had gotten up early to get my entrance pass for the COSP before 9 AM. I met Tina Minkowitz outside and we had a nice chat together. Then we accessed the UN compounds, and each went our way, since there were many people to meet up with.

The Civil Society Forum (CSF) was taking place in Conference room 4, where about 200 participants gathered. Colin Allen, chair of the International Disability Alliance (IDA), and moderator of the Forum, opened the CSF and welcomed all participants to the Civil Society Forum.

The Opening Panel started with this year’s president of the COSP, H.E. Georgi Panayotov, permanent representative of the Republic of Bulgaria to the UN, who highlighted the importance of the participation of Disabled Persons Organizations (DPOs) at the UN level, and stated that the COSP, organized by UN DESA, is an example of working together and including all stakeholders on pressing themes.

Theresia Degener, Chair of the UN CRPD Committee, emphasized that Civil Society Organizations (CSO) play an important role in protecting the standards of the UN CRPD by pushing for implementation and monitoring of the UN CRPD. A strong voice by civil society is needed. Only then States will learn to leave no-one behind.

Catalina Devandas, UN Special Rapporteur on the Rights of Persons with Disabilities, stressed that the UN CRPD was once a dream, but civil society pushed it through. She then highlighted the importance of developing indicators and accurate data collection (disaggregated data for disability), to enable monitoring, stressing that a lack of accurate data and indicators may hinder effective developments.

Collin Allen then closed the session by stressing that it is important to reflect, share and learn together. The key to a successful Civil Society Forum is participation.

*
At 10.30 AM, Session One started, moderated by Vladimir Cuk of IDA.
Panel 1 was called: “Nothing about us without us: Practical implementation of article 4.3”, and comprised 3 speakers, including Tina Minkowitz of CHRUSP.

First Yannis Vardakastanis of the European Disability Forum (EDF) spoke about the importance of participation, which should be inclusive and not paternalistic. He suggested that the CRPD Committee could possibly make a General Comment on article 4.3.
(personally I doubt whether this would be effective, since I don’t think the problem lays in actually misunderstanding the concept of “consultation”, and not everything can be solved with a General Comment. Yet obviously, I am not against it either).

Then Risnawati Utami of OHANA, spoke about the opportunity of the Sustainable Developments Goals (SDGs) and Voluntary National Reviews, and presented a case study from Indonesia, where a DPO and the government worked together on the local level, on collecting data for the voluntary national review of the SDGs. She emphasized that inequality and poverty are closely related to disability.

Tina Minkowitz of the Centre for the Human Rights of Users and Survivors of Psychiatry (CHRUSP) spoke on: All rights, all people with disabilities. She stressed that the CRPD negotiations were based on the principle: “all for all”. Tina also highlighted that DPO consultation was also addressed prior to the UN CRPD, in the Standard Rules for the Equalization of Opportunities of Persons with Disabilities, and it’s language may even be stronger than the UN CRPD language. She also stressed that psychiatric practices are still often done fully “without us”, referring to deprivation of legal capacity and liberty, and she stressed that these rights are as important for the disability movement as accessibility.

The panel was immediately followed by Panel 2: “Leaving no-one behind: Addressing multiple & intersecting forms of discrimination”.
Leaving no-one behind means “everybody moves forward”

Carlos Rios Espinosa of Human Rights Watch spoke about the Sustainable Development Goals (SDGs) and the right to live independently and be included in the community. Human Rights Watch has reported many times on human rights violations in institutions. The lack of alternative supports is often a reason for institutionalization, therefore Human Rights Watch is now putting more focus on building inclusive communities.

Nidhi Goyal, activist on Disability Rights and Gender Justice, spoke about realizing gender equality in the disability movement, “we for she”. The discrimination faced by women and girls with disabilities is more than just the sum of ‘multiple discrimination’, but also includes specific ‘intersectional discrimination’ which cannot be understood by a sectionalist approach only.

Mariana Camacho, youth representative, spoke about challenges for youth with disabilities in engaging with advocacy, such as lack of information, training and opportunities for young people with disabilities. She called on civil society to foster cooperation between young and older people, with and without disability, possibly by using modern communication tools for outreach and empowerment.

Then, from 12.30 to 1.00 PM there was an Open Dialogue, moderated by Michel Servoz of the European Commission, who took various questions from the floor for discussion with the panellists. An interesting critical remark was made on bodily autonomy (on rape versus forced drugging or restraints), and a reference to several Concluding Observations of CEDAW, which also address the human rights violations by forced psychiatric interventions of women with psychosocial disabilities.

As a last thing in the morning session, Yana Buhrer Tavanier presented on a good practice from Bulgaria, where the Centre for Not-for-profit Law is working to have all guardianship abolished. A pilot project on supported decision making has been started, and persons under guardianship are now developing a network of trusted persons. Bulgaria is working on the ‘natural persons and support measures act’.

Then it was time for lunch, for which we had nearly 2 hours. But actually, from 1.15 on, the Open Dialogue in Conference room 4 continued. The floor was given to the participants of the Civil Society Forum, to share their ideas and concerns. I stayed and listened. Some issues that were mentioned were the importance of “Easy Read” materials, concerns about the ongoing dominance of the medical model, about refugees with disabilities, and using media to raise pressure.

In the morning session, the Forum provided a space for civil society to share and reflect on experiences and lessons-learned from the first ten years of the CRPD. The afternoon sessions placed emphasis on the second decade of the CRPD and next steps towards full implementation of the Convention.

*
At 3 PM the Civil Society Forum continued with the afternoon sessions on: Good Practices from the Disability Movement: Implementing the Convention on the Rights of Persons with Disabilities.

Session Two of the CSF was about Situations of risk and humanitarian emergencies (CRPD article 11), moderated by Gopal Mitra of UNICEF, and comprising 4 speakers.

Dwi Ariyani of Disability Rights Fund (DRF) spoke about achieving humanitarian action inclusive of persons with disabilities. DRF has supported several DPOs in Indonesia to develop disability inclusive disaster risk reduction. Successful elements were: building partnerships between DPOs, local governments and humanitarian actors, raising community awareness by using local culture (puppet theatre), training and capacity-building, supporting DPOs to strengthen the voice of persons with disabilities, and by making tools, resources and communication accessible.

Jess Markt of the International Committee of the Red Cross (ICRC), spoke about gaps and challenges faced by humanitarian actors. He described his work on inclusive communities through sports for persons with physical disabilities, and by an example of introducing wheelchair basketball for women in Afghanistan, he highlighted the 3 moves towards inclusion: reaching out to anyone who may benefit, creating an accessible space, and working to change expectations and perceptions and normalize inclusion within the community and broader society.

Kirstin Lange of UN Refugee Agency (UNHCR), spoke about tools and opportunities for engagement regarding inclusive humanitarian action for persons with disabilities. She stressed that over 65 million people are currently displaced, and at risk of violence and unmet needs. There are 2 key processes to address humanitarian action and large movements of refugees and migrants: the New York Declaration for Refugees and Migrants (UN GA, 2016) and the Charter on Inclusion of Persons with Disabilities in Humanitarian Action (World Humanitarian Summit, 2016). Both tools include references to persons with disabilities, and participation is a guiding principle.

Abraham Abdallah of the Arab Organization of Persons with Disabilities spoke about the importance of leadership of persons with disabilities. DPOs witness harsh conditions in refugee camps, where persons with disabilities and injuries do not get the support they need. He shared 3 recommendations: give DPOs a leading role in relief efforts (the role of IDA in the Inter-Agency Standing Committee Task Team (IASC) is a good example), shift from charity or medical model to human rights model, and build partnerships between the 2 communities.

Then there was time for discussion. Again it was interesting. There were some interesting critical remarks on data collection by the Washington Group Set of Questions, and also on mental health and First Aid psychosocial support to migrants and refugees, which still needs attention, since partners in the field need to be educated on the rights based approach as well. (previous guidelines refer to “best interest” instead of the “best interpretation of the will and preferences of the person”) .

I made a remark on psychosocial support to refugees, about whether it would be useful to make a difference between injuries and long term disability, which was just a spontaneous thought actually. I am not sure if it would be useful.

*
The final session of the day, Session Three started at 4.30 PM, moderated by Facundo Chavez, disability advisor to OHCHR. The session was called: “Achieving the full inclusion & participation of persons with disabilities: Next steps”.

Mika Kontianen of the Department of Foreign Affairs and Trade of Australia, first explained that the Australian government addresses the needs of persons with disabilities by a twin track approach: both through existing aid programmes, as well as by targeted investments, mainly in strengthening DPOs in international and local participation and capacity building. Governments need the dialogue and input of DPOs. Then he spoke about the important role of partnerships in the global development agenda, highlighting the UNPRPD (UN Partnership to Promote the Rights of Persons with Disabilities) and GLAD (Global Action on Disability-network).

Daniel Seymour of UN Women spoke about building inclusive UN agencies and possibilities for engagement with UN Women. Gender equality also means to challenge perceptions. He identified 5 important points for inclusion in organizations: clarity of commitment, capacity, evidence, accountability and “walk the talk (accessible)”. Partnerships between UN Women and DPOs are also very important, and DPOs are welcome to join the CSO Advisory Group of UN Women. In addition, UN Women has some experience in data collection (gender equality) and in dealing with intersectionality (how multiple forms of discrimination and exclusion can interact).

Priscille Geiser of the International Development and Disability Consortium (IDDC) spoke about strengthening the capacity of civil society, highlighting the BRIDGE CRPD SDG initiative. To advocate, preparedness of persons with disabilities and their DPOs is needed, yet those who are most legitimate to ask for support are left behind and deprived. To break the negative cycle of exclusion, the Bridge CRPD SDG training was developed to train a critical mass of advocates, who are able to develop a CRPD perspective on the developments. The BRIDGE CRPD SDG training initiative is a collaborative investment by various task teams (linked to IDA, IDDC and DRF)The Bridge training comprises 2 modules, 2x7 days. Module 1 is to learn more about the UN CRPD and to be able to analyse developments from a CRPD perspective, while module 2 focusses more on different key advocacy routes, and taking action on developments (beyond awareness raising).

Mohammed Ali Loutfy of Disabled People’s International (DPI) spoke about the New Urban Development Agenda (Habitat III), which is inclusive, and is part of the Sustainable Development Goals (SDGs), and therefore providing an opportunity to ensure involvement of persons with disabilities at all levels. The adoption of Habitat III in 2016 was the result of preparatory platform: now called the Disability Accessible and Inclusive Urban Development Network (DAIUD-Network), and also by the coordination mechanisms of IDA. Both these platforms, and the Habitat III itself, prove that engaging with persons through assistive technologies is effective. Both IDA and the DAIUD-network were offering platforms for persons with disabilities to come together, or via ICT, to be involved in these processes. Through this, persons with disabilities were able to contribute their ideas and recommendations. Such platforms could be replicated at all levels. He suggested to recreate similar platforms at national level. He stressed that involvement should go further than internet.

There was some time left for questions from the floor, and then around 18.00 PM the Civil Society Forum was closed by Collin Allen. It had been a very long, inspiring day.

Afterwards, I took a walk and grabbed some food on the way, and then I went back to my hotel at Long Island City, to finish my presentation for the next day. Then wrote a few lines for my blog, but I was so tired already that I decided to go to bed. It had been a very nice first day (in 2017) in New York.