Civil Society Forum -DGD on art 4.3- at COSP CRPD - Reisverslag uit New York, Verenigde Staten van Jolijn Santegoeds - Civil Society Forum -DGD on art 4.3- at COSP CRPD - Reisverslag uit New York, Verenigde Staten van Jolijn Santegoeds -

Civil Society Forum -DGD on art 4.3- at COSP CRPD

Door: Jolijn Santegoeds

Blijf op de hoogte en volg Jolijn

19 Juni 2018 | Verenigde Staten, New York

From 10-15 June 2018 I have been to New York, to join the COSP, Conference of State Parties to the UN Convention on the Rights of Persons with Disabilities (UN CRPD). Also see the official website:
It was once again very inspiring to be at the COSP, and to meet so many inspiring people who are dedicated to implementing human rights all over the world.
The COSP CRPD is a large conference with delegations of States who ratified the UN CRPD and also a lot of organizations of persons with disabilities (DPOs/OPDs) and non-governmental organizations (NGOs) who come together to discuss the implementation of the UN Convention on the Rights of Persons with Disabilities. I had been able to cover my own expenses, and was part of the delegation of the World Network of Users and Survivors of Psychiatry (WNUSP), together with Hege Orefellen, Ohyong Kweon and Tina Minkowitz. (all coming with support of their own networks, on their own resources). It would be better if WNUSP had funding for enabling representation from various regions (hopefully next year?). Personally, I had decided only shortly in advance that I would be able to go myself.

On Sunday 10 June I arrived in New York in the early evening, and first went to my hotel in Queens, Long Island City to drop off my bags. Then I managed to meet Hege and Beate from Norway in Chinatown, where we had a nice dinner together. It was great to meet them, and we were all inspired and looking forwards to a fruitful COSP.

On Monday 11 June I first went to the pass-office of the UN to collect my registration badges. There I met Ohyong Kweon from Korea, WNUSP-board member. It was absolutely great to be able to meet in person again.

Then we went into the UN building together for the UN CRPD Civil Society Forum, which is a kind of thematic networking day, and this year it was dedicated to a Day of General Discussion on CRPD articles 4.3 and 33.3, for which the UN CRPD Committee is preparing a General Comment (number 7). CRPD Articles 4.3 and 33.3 are about consultation and meaningful inclusion of persons with disabilities in all layers of decision-making, policy-making and monitoring. “Nothing about us, without us”.
More information, the submissions, and the English version of the Draft General Comment (7) on CRPD articles 4.3 and 33.3, can be found on the CRPD-Committee website:

At 10 AM the Civil Society Forum started with an opening session. We were welcomed by H.E. Georgi Panayotov, Permanent Representative of the Republic of Bulgaria to the UN, and President of the COSP, who highlighted that the COSP should be a good example of implementing the UN CRPD at the UN, and to show that we can achieve more when we all really work together, and the voices of persons with disabilities themselves are heard, in line with article 4.3 and 33.3.

Prof. Dr. Theresia Degener, Chairperson of the UN CRPD Committee, explained that this General Comment on participation is being discussed in New York for various practical reasons (e.g. using the available space in the UN system, and making use of the platform with the biggest global representation of persons with disabilities). She thanked the organizers of the Civil Society Forum for hosting the space for the Day of General Discussion. She emphasized: All voices must be heard, leaving nobody behind.

Mrs. Catalina Devandas Aguilar, UN Special Rapporteur on the Rights of Persons with Disabilities, spoke about the importance to secure the participation of persons with disabilities, to identify and eliminate barriers, and that meaningful inclusion moves beyond ‘consultation’, e.g by strong collaboration and commitment of civil society organizations and states, with a true aim for consensus. The input of civil society in the UN CRPD is unprecedented, and presents a modern and strong aspect of the human rights framework, based on the recognition of the real expertise of civil society, e.g. organizations of persons with disabilities, on what is needed to realize our rights. Leaving nobody behind means that the most marginalized groups must be included meaningfully, urgently. Barriers for participation need to be eliminated, and inclusion be supported.

Mr. Colin Allen, Chairperson of the International Disability Alliance (IDA), highlighted several milestones after 1 decade of the UN CRPD, such as the official position of the UN Special Rapporteur in the Rights of Persons with Disabilities, a mandate in the Human Rights Council, and the rights of person with disabilities are included in the 2030 Agenda for Sustainable Development. Still there are many barriers for meaningful involvement (e.g. tokenistic and meaningless consultations, last minute invitations, lack of accessible information, failure to ensure an enabling environment, as well as a broader situation of civil society facing barriers (e.g. by conditions regarding associations, funding, support).

Around 10.40 the first session started: Panel 1 on Equality and Inclusion of All Groups of Persons with Disabilities.
The panel was moderated by Juan-Luc Simon of Disabled People’s International Europe.

Eeva Tupi of the World Federation of the Deaf spoke about the importance of capacity-building workshops to empower persons with disabilities to actively participate in decision-making processes. The use of sign language should not be limited to CRPD-related matters, but everything must be accessible to realize meaningful participation. She illustrated a number of barriers for deaf persons which need to be overcome (e.g. lack of provision of sign language, communication barriers in networking, lack of empowering education). She stressed that people should be able to use their own language.

Jane Akinyi of Inclusion International, made a very impressive contribution, and spoke out as a self-advocate with intellectual disability. She comes from Kenya and had a supports person on her side who interviewed her, and Jane replied eloquently. She highlighted that persons with intellectual disabilities are generally not having access to education, independent living, or live the life they want. They often depend on family to respect them, give opportunities, and to empower them to speak for themselves as self-advocates.

Ohyong Kweon of the Korean Alliance for Mobilizing Inclusion (KAMI) spoke about the rights of persons with psychosocial disabilities and the situation in Korea. The CRPD mentions the right to participate, while in Korea the old paradigm of involuntary hospitalization and guardianship is very widespread. In 2006, hospital statistics on periodic review of forced admissions showed that nobody was discharged during that year, which is shocking. Nobody left the hospital in 2006. There are virtually no services for inclusion in the community, and unfortunately, wrong data are reflected in a WHO report (which suggests that in Korea 31% of the mental health budget goes to hospitals, but in reality this is 99%.) KAMI focusses on advocacy, education and support for persons with psychosocial disabilities. Participation is a right, and it is vital for quality of services and accountability.

Monthian Buntan, member of the UN CRPD Committee, wished us all “a good morning and more power to all”. He stated that the goal of development is inclusion, and the goal of human rights is equality, and the CRPD shows that inclusion and equality are actually the same thing in practice. Participation is the key. The CRPD states that persons with disabilities are rights holders, yet in practice, they are still the poorest of the poor facing many forms of discrimination. Many groups are still left behind and are excluded or even prohibited from participation, forming organizations, or education and empowerment, e.g. indigenous people, undocumented persons, LGBTI groups, and groups of persons with disabilities. Ongoing support is needed for capacity building of groups who are still left behind, and to ensure that they are included and their participation is enabled. To cover all groups, one can explore a “worst case scenario approach”, e.g. to identify groups who face multiple and intersectional forms of discrimination. Leaving people behind is a crime.

Malin Ekman Alden, Director General of the National Authority for Participation Sweden, spoke about practices in Sweden where active involvement may take the form of co-production, and persons with disabilities are giving input in the design process on what is the problem, the cause and the solution, identifying social and sustainable solutions together. To include persons with disability in all diversity needs to be more developed. It is not about ‘perfect language for policy making’ but it is about including the reality of life.

There was a little time for reactions from the floor, during which various organizations presented a statement on participation (e.g. representatives with intellectual disability, women groups, persons with autism, and regional organizations). Several perspectives on the role of family organizations and self-representation were already brought up.

Around 11.50 the next session started: Panel 2: on Article 4.3 of the Convention, moderated by Mohammed Loutfy of Disabled People’s International.

The first speaker was Yannis Vardakastanis of the European Disability Forum and the European Economic and Social Committee. He emphasized that CRPD article 4.3 is the heart of policy making. Persons with disabilities should be actively included and meaningfully involved in all decisions that affect us, as reflected in the slogan: “nothing about us, without us”. And in fact everything affects us, so it should actually be : “nothing without us”. We have to demand for our space to be heard. Change will not come on its own. “In the history of human rights, nothing was given, everything was won”.

Charlotte McClain-Nhlapo of the World Bank highlighted the importance of including the disability narrative in all governance, and emphasized the relation between poverty and exclusion, which prevents people to have an own voice and an own agency. It is important to give space to the voices of the most marginalized groups. Inclusion is crucial for political decision-making, good governance and accountability. She mentioned the Environmental And Social framework – standard 10- several times (see ). This Standard 10 (ESS10: Stakeholder Engagement and Information Disclosure) explicitly mentions disability, inclusion and accessibility at various points. The WorldBank also works with ‘deliberation forums’ to consult persons who are most in need, and most excluded, e.g. in India, Brazil and China (read more: )

Tina Minkowitz of the Center for the Human Rights of Users and Survivors of Psychiatry, spoke about the history of CRPD-negotiations, and how the International Disability Caucus as an umbrella organization (prior to IDA) recognized the sovereignty of each constituency in the movement, each DPO was seen as the expert on their own issue, and all together aimed to find consensus. It is important to recognize that an umbrella organization cannot be a substitute voice, but that the decentralization of knowledge across DPOs is a fact. There are mutual interests and commonalities, but bigger umbrella’s should not homogenize the voice of persons with disabilities. The self-representation of DPOs must be recognized. “we must cast of paternalism for once and for all”.

Emmanuelle Grange of the European Commission, mentioned several initiatives of the EU to dialogue with civil society, such as the European Day of Persons with Disabilities, and the European Workforum on CRPD Implementation. There are also challenges, e.g. the rules for European funding to civil society organizations are strict and cover maximally 80% of any project.

Shatha Abusrour of the General Palestinian Union of Persons with Disability (GUPWD). She mentioned that persons with disabilities are tired of slogans and long documents, and they long to find what works in different regions. The CRPD is a good document but inaccessible and should be revisited. Empowerment of persons with disabilities is needed, but in Palestine there is no national council and no freedom of movement. The question of ‘how can inclusion be done better in practice’ is a very important question.

Then there was some time for discussion, and again several organizations made statements or asked clarifying questions from the floor. Family representation was again a theme. And an interesting remark was made, as a possible suggestion for the General Comment, highlighting that consultation actually is a civil-political right, and bearing a duty for immediate realization, with possible legal consequences for noncompliance (also in the light of good governance and accountability). Enforcement of standards is needed, and the speakers agreed to this point. (“legal obligations without enforcement are not good”).

After that, Theresia Degener gave a short summary of the morning sessions, and then it was time for lunch.

After the lunch break, there was Panel 3 on Article 33.3 of the Convention, moderated by Dominic Haslam of the International Disability and Development Consortium (IDDC)

Ekate Judith Umoh of the Joint National Association of Persons with Disabilities, mentioned that persons with disabilities are only mentioned in article 33.3 and not in 33.1 or 33.2. However, it is necessary to understand the design and scope of the monitoring mechanism and the wider system, to know what exactly needs to be monitored. If one doesn’t know which rights and duties are being monitored, one cannot participate meaningfully. So to avoid tokenism, it is important to include persons with disabilities in all phases, and engage fully throughout the design and development of any monitoring mechanism.

Brent Morgan of the Leprosy Mission International, mentioned that the UN CRPD offers several options to engage for participation and monitoring, e.g. via the coordination mechanism (focal point), the independent monitoring mechanism, and in a proactive role overall on each article throughout the Convention. Installing advisory boards can be a way to raise issues to the national platform on the CRPD.

Lauro Purcil, ASEAN Disability Forum, highlighted that exclusion very often occurs through definition. It is important to monitor how the government identifies persons with disabilities. It is not about impairment, but about monitoring the barriers, and identifying what the government is not doing enough. Persons with disabilities are affected by anything that affects other people, inclusiveness is everything about humanity, and synonymous.
Support is a right. If conditions for services are barriers to services, this is a violation of the UN CRPD and all human rights. We deserve what other humans deserve, to exist and behave like other people. And governments may say that persons with disabilities are not tax payers, but that is not true, we all pay taxes in many ways, so we also have the right to services. It is important to include persons from remote and rural areas, and internally displaced indigenous people. What is worse than being left behind, is being invisible.

Carlos Rios Espinosa of Human Rights Watch highlighted a research that Human Rights Watch has done in institutions for persons with disabilities in Brazil. (see ) Persons with disabilities are confined in institutions in Brazil in terrible conditions. They are excluded from any form of political participation, and it is not possible to access any organization. In Brazil over 10.000 persons with disabilities are held in institutions, some are stuck there since childhood and “they stay until they die”. No process of CRPD implementation or monitoring of the UN CRPD exists in these places. They cannot vote, don’t have social contacts outside, limited educational services, and seen as ‘incapable’. Institutions have total control over their lives, and families or third parties act as guardians. Their possibilities for participation are literally absent. And even though there is a system of Ombudsman to complain, persons with disabilities often don’t see themselves as rights-holders and feel as if they have to show gratitude. They remain invisible and their voice is silenced by barriers and attitudes. These institutions are worse than prison. “once you have a disability, life is over”. This must be addressed.

Paula Tesoriero of New Zealand NHRI/GANHRI spoke about the Human Rights Commission in New Zealand, and their practices of involving persons with disabilities, through 6 DPOs. She highlighted that supporting DPO involvement on monitoring under article 33.3 of the UN CRPD, requires genuine commitment, starting with making concepts already accessible, and understanding how people can have a say (e.g. Young people may not feel as part of an organization, and may be empowered in their own format.) DPOs should be as representative as possible. The voice of DPOs should be given particular value and priority.

There was again some time for questions and statements, with e.g. a remark on the need for the recognition of guide-interpreters. And a remark underlining the need to recognize that specific marginalized groups may not be organized, and in parts of the world DPOs and networks may be non-existing, so then individuals can be recognized as representatives.
A final remark was made on the fact that the UN Declaration on Human Rights was concluded in 1948, and if it were fully successfully implemented, there would have been no need for the UN CRPD. So for about 70 years, all have failed to understand what inclusion and equality means. Article 4.3 is a modern provision which ensures that people are involved in the decisions that affect their lives, which requires a massive culture change. The authorities must make that path for meaningful participation. It is a very significant step for realizing human rights for all.

This interesting discussion was followed by an Interactive debate on all panels, chaired by Theresia Degener instead of Laslo Lovaszy, both members of the UN CRPD Committee.

The issue of the Washington Group short set of Questions came up (which is a questionnaire to identify persons with disabilities, also see ). Persons with psychosocial disabilities are not counted under the Washington Group Short Set of Questions, by which they remain invisible, which is not the spirit of this COSP “leaving nobody behind”. Also children under 2 years of age are not counted. In the Extended Set of Questions, there are some questions on depression and anxiety only (and many people may still fall through the cracks).
Another worrying thought about the Washington Group set of questions, and identifying persons with psychosocial disabilities, is the question whether people will be willing to disclose this at all, e.g. they may have been traumatized in horrible psychiatric hospitals, ostracized by the community, suffering from taboo and discrimination, even be intimidated to refrain from speaking, and possibly they may fear that things may get worse by disclosure.

Once more the principles of the Ad Hoc committee and International Disability Caucus were highlighted, with the key principle of respect for diversity and parity of constituencies, respecting each expertise, regardless of the level of formality of the organization. One should not favour a registered NGO over a non-registered NGO, which may be the situation that some groups of persons with disabilities face, where family or mixed organizations may be better organized than persons with disabilities themselves.

Another point was on the situation of risk, emergency and disaster. Persons with disabilities are disproportionally affected, and the number of deaths during emergency is more than double compared to the general population. Persons with disabilities should be involved in the design of all plans on (disability inclusive) disaster risk management.

The role of poverty, and the need to include multidisadvantaged people was stressed once more.

At 5.30 PM the final session of the day started: Concluding Comments and Closing Remarks.

Monthian Buntan, member of the UN CRPD Committee repeated the call to bring back the momentum of the Ad Hoc Committee/ the International Disability Caucus, which was a success. Some groups may be not so well addressed now.
We must realize and encourage rights actively, and be designed to be inclusive, welcoming, open and democratic.

Yeni Rosanna Damayanti of Transforming Communities for Inclusion, Asia (TCI-Asia) highlighted that close consulktation, participation and co-production must be done at all levels, and cannot be done last minute, but it must be consistent, long and strong, based on co-ownership. The parity of constituencies must be upheld. Whatever issue is particularly relevant for a particular constituency, they must have their voice heard, and if it’s not an organization, then an individual.
Legal obligations without enforcement are useless, so there may eventually be legal remedies to be consulted and involved. There is no more room for excuses for non-compliance. There can only be full inclusion. Still a lot of barriers remain which obstruct the participation of persons with disabilities, e.g. the lack of easy read materials, the physical barriers in hospitals and social care institutions, and undocumented people who remain invisible. The role of family can be supportive, but also potentially undermining. It is important to be clear on what representation of persons with disabilities is, and to uphold the voice of persons with disabilities themselves.

Monthian Buntan added that the General Comment is about persons with disabilities, and not about others. He once more highlighted that the upcoming General Comment (no.7) on article 4.3 and 33.3 is so meaningful for the human rights implementation, and to secure the input of civil society. He also suggested that maybe more Days of General Discussion could be held in New York at the Civil Society Forum. He then closed the session and once more wishes us “more power to all of us, anyone can make a contribution to human rights, and give up on giving up!”

In the evening, Ohyong had invited us all for a dinner in a steakhouse, and together with Tina, Hege, Beate and Suna, I joined and we had a really great evening together. Unfortunately, Bhargavi and Yeni of TCI Asia couldn’t join us, and so far we didn’t manage to meet up yet, but we would keep on trying to meet on another day, between the various events and meetings. It had been an inspiring day.

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