EC WorkForum on UN CRPD implementation in EU 2018

On Tuesday 29 May 2018, I joined the European Commission’s Work Forum on the implementation of the UN Convention on the Rights of Persons with Disabilities (UN CRPD) in the European Union (EU) and its Member States.

The programme of the meeting can be found here: http://ec.europa.eu/social/main.jsp?langId=en&catId=1138&eventsId=1326&furtherEvents=yes

I represented the European Network of (Ex-) Users and Survivors of Psychiatry (ENUSP, http://enusp.org/ ). I was invited and the travel and accommodation had been arranged by the European Commission. I arrived Monday 28 May late in the evening and went straight to the Courtyard Marriott hotel in Brussels.

On Tuesday 29 May 2018 I went to the Charlemagne Building of the European Commission (EC) in Brussels, Belgium, where the Work Forum on the CRPD was held.
This year, the Work Forum focussed on:
- Health, habilitation and rehabilitation in the CRPD
- Knowing your rights: disability awareness and training programmes
- The role of UNCRPD Committee

At 9 AM the meeting started with a word of welcome by Manuela Geleng, Acting Director Social Affairs of the European Commission DG-Employment, Social Affairs and Inclusion. She explained that the annual EC work forum was meant to take stock of the implementation of the UN Convention on the Rights of Persons with Disabilities (UN CRPD) at EU level and in its member states. Some important developments at EU level are the proposed European Accessibility Act and the European Social Pillar, of which health and habilitation are also part. Implementing the UN CRPD is a continuous process.

Nadjeda Harizanova spoke on behalf of the Bulgarian Presidency, Permanent Representation of Bulgaria to the EU. She elaborated on the implementation of the UN CRPD in Bulgaria, for which an action plan and a national strategy is developed. She said “a right is not something that someone gives to you, a right is something that nobody can take away from you”. I liked that phrase.

Gunta Anca, Board Secretary of the European Disability Forum (EDF) spoke about the importance of language, and stressed that persons with disabilities are not to be seen as ‘sick persons’ who need to be cured, but disability is something different. She also highlighted the importance of the Istanbul Convention on violence against women and girls, as well as to campaign against the Draft Additional Protocol to the Oviedo Convention. Also she stressed the influence of the media on the public opinion, and the overall importance of accessibility. She stressed that the European bodies can make the necessary changes happen.

Around 9.30, the first thematic session started on Health, habilitation and rehabilitation in the CRPD, chaired by Alarcos Cieza of the World Health Organization (WHO), who acknowledged “for reasons well-known” she understood that there may be reluctancy to discuss the topic of health for persons with disabilities. But the right to health is a valuable right in itself, because it gives everyone the right to the enjoyment of the highest attainable standard of physical and mental health. Currently, the UN Special Rapporteur on Disability works on a report on the right to health, and OHCHR is working on a report on article 26 habilitation and rehabilitation.

The first speaker of the session was Pirrko Mahlamaki, EDF Board member, who gave an overview on recommendation of the CRPD, on women and forced treatment. She emphasized that people with disabilities should not be portrayed as a burden to society, because that is hate-speech. We are full human rights holders. The medical-defect-model should not overrule human rights. She also emphasized the importance of free and informed consent to any treatment, and human rights do not allow for forced treatments, and no third party consent. States should install punishment on failures of consent, since forced treatment and forced placement are prohibited under any circumstance. The Draft Additional Protocol to the Oviedo Convention must be withdrawn. Also sexual and reproductive rights are important, and there should be no denial of sexual rights, no forced abortion or selective abortion.

Then Stefanos Grammenos, ANED expert, CESEP spoke on Health Indicators. He gave an overview of the European Health Survey and presented statistical data. He acknowledged that the collected data of Eurostat were gathered under the old static concepts and definitions of “persons with limitations”, and they do not take into account the interaction with barriers in the community (yet).
The data can be found on the website: https://www.disability-europe.net/theme/statistical-indicators . At some point, I got really upset when he said “according to the data on access to medical services for persons with disabilities, there are good practices in the Netherlands and Austria ". It just brought me to tears. (by now I know it's the impunity that hurts so much. I am Dutch, and I have suffered from medical neglect 3 times, including when the staff did not believe my pain when I broke my Achilles tendon, and also with my thumb, which eventually needed a tendon-transplant due to the neglect. I also know a case where a Dutch guy died from broken ribs after staff didn’t believe his pain and injuries (and the family was paid to keep it silent). It is a big problem in the life of persons with psychosocial disabilities. I was upset that the data didn’t reflect the real problems.
In the discussion time, I immediately raised my hand, and raised my question on the Netherlands regarding unmet needs for medical services. I said that in my life alone, it already happened 3 times that my medical needs were neglected, and my expressions were medicalized as psychiatric symptoms, and I know of other cases, of broken bones of which the person eventually died. So this is not a “good practice in the Netherlands”, and I really do not believe that the data are accurate.
The presenter responded by saying that persons in institutions are NOT counted by Eurostat surveys, which actually means that persons with psychosocial and intellectual disabilities are largely excluded from the data. In addition, I stressed that this group also does not fit in the definition "persons with limitations" (this point was made by others too). After this presentation, I was still upset, it was just under my skin half of the day. And as far as I can see it, the pain is caused by the impunity. (*The Dutch seem to get away with everything, and that hurts a lot…)

After this presentation, I left the room for a moment, because I really needed to calm down a bit, and after a few minutes, I went back into the room.

There was a session on cross-border access to health care, by Janina Arsenjeva, European programme manager, International Federation for Spina Bifida and Hydrocephalus. She emphasized the link between health conditions and disability. A primary health condition can lead to disability, but not all disabilities are caused by a disease. A secondary health condition is caused by the primary health condition. In addition, several health conditions can co-exist in the same person (co-morbid conditions). The European cross-border health care directive (2011/24/EU) identifies patient rights and policies for receiving medical care in another EU country.

The last speaker of the session was Raquel Castro, Social Policy Senior Manager, EURORDIS-Rare Diseases Europe, who spoke about the challenges that are faced by persons with rare diseases, e.g. in access to healthcare and habilitation. They often have unmet health and rehabilitation needs, and are sometimes rejected due to the ‘complexity’ of their needs (something which I recognize from the perspective of persons with psychosocial disabilities). European Resource Networks are being developed to address the needs of persons with rare diseases.

The session was closed with a discussion, and then there was a coffee break.

At 11.30 the second session started: Knowing your rights: Disability awareness and training programmes, chaired by Nadia Hadad, board member of the European Disability Forum (EDF).

Luk Zelderloo of the European Association of Service Providers for persons with Disabilities, EASPD, spoke about training and awareness raising campaign mong service providers, and mentioned a number of barriers for CRPD implementation. He stressed that most service providers have received training based on the old concepts of charity and medical-defect-model, and they lack awareness on the human rights model. Therefore EASPD provides trainings in the UN CRPD. Second, service providers must work within the legal provisions of the country, which may not reflect the spirit of the UN CRPD (e.g. disability assessment tools are not focussing on abilities or removal of barriers for participation, - or strict hygiene codes may prohibit to cook meals for each other - making it hard to follow the UN CRPD in practice). Also financial frames need to include funds for users, so they can have a strong say in the provision of service and support. He highlighted a number of specific programmes EASPD is running to raise awareness, build capacity and to share good practices, such as AJUPID, D-LOT and SKILLS-trainings, (also see: http://www.easpd.eu/en )

Maria Gomez, research associate of the Centre for Disability Law and Policy of the National University of Ireland (NUI Galway) spoke about training of professionals on the UN CRPD, and highlighted the courses and projects hosted by NUI Galway, including LLM courses (law studies), PhD studies, the famous International Disability Summer School (also see: https://www.nuigalway.ie/centre-disability-law-policy/internationaldisabilitylawsummerschool/ ). She mentioned the PERSON-project, the VOICES-project on self-determination (see: https://ercvoices.com/ ), the Structural Funds Watch (see https://communitylivingforeurope.org/ ) , and the study on disability-specific forms of Deprivation of Liberty.

Joelle Desterbecq, director for studies and research of the Conseil Superieur de l’Audiovisuel of Belgium, spoke about the representation of persons with disabilities in the media. A study was done to analyse how often, and in which role, persons with disabilities are included in public media. It was found that persons with disabilities are hardly present in most roles, often given a passive role. The CSA, which upholds the rules for all public broadcasters in the region, received complaints on the portrayal of persons with disabilities with discrimination and hatred, but most complaints were inadmissible due to the strict definitions used.
He also highlighted a good practice on gender equality: A newly installed media-code recently shifted the focus from arguing on ‘incitement to discrimination and hatred’ towards an obligation to respect gender equality, which did have an impact in practice and reduced gender stereotyping in programmes and commercials overall.

The presentation from Ladapt, France, on the awareness raising campaign 2017 #Sand Limites, was cancelled due to absence.

The next speaker was Csaba Gosztonyi, the managing director of Carbon Group Communication, Hungary, who presented MONDO, an awareness-raising card game, which was developed by a group of various stakeholders (including advertisement professionals, a school, and the Hungarian Civil Liberties Union). The card game MONDO is especially designed to teach children with disabilities and their surroundings about human rights, but it is actually useful for every person to learn about human rights in practice. It is a colourful card game, which brings up situations that can be hard to discuss, but by the style of the game, it becomes easier to talk about it, and to look at situations from different angles. There is also a theatre play, and a short movie about a robot, which also raises awareness on the rights of disabilities (e.g. when his voice-chip breaks down). It is very accessible for children to learn about human rights in a way that attracts them.
I really liked this initiative a lot. I was sad to hear that it didn’t get the support from the Hungarian government to be spread on every school, for every kid.
More information in English: http://www.right-to-decide.eu/2016/02/mondo-card-game-learn-how-to-protect-yourself/
Hungarian website: http://mondo.tasz.hu/

Then there was time for discussion and debate, which basically comprised questions for clarifications on the projects that were presented.

After a nice lunch, at 14.30, the third session of the day started, titled: the Role of the UN CRPD Committee. This session was chaired by Ima Placencia, senior expert of DG-Employment of the European Commission, who was happy to announce that by now, all EU member states have ratified the UN Convention on the Rights of Persons with Disabilities (UN CRPD).

Birgit van Hout, Regional Representative for Europe of the UN Human Rights Office (OHCHR) spoke about UN Human Rights Committees in practice, and explained how the UN system works, with 10 treaty bodies related to 9 international treaties. The UN Committees are comprising individual experts who are elected at the sessions in New York, and they assess the progress and issue recommendations to state parties. These recommendations, Concluding Observations and General Comments are not just suggestions, but are seen as authoritative interpretation, which can be part of case law and jurisprudence. Other treaty bodies also refer to the rights of persons with disabilities, e.g. on women or children with disabilities, or under the Convention Against Torture (CAT). There are also areas where not all treaty bodies have a unified position (yet), e.g. om legal capacity of persons with disabilities, deprivation of liberty on the basis of impairment, coercion on persons with psychosocial disabilities and disability-selective abortion). The rapid ratification of the UN CRPD brings a heavy burden of workload onto the CRPD Committee, who attempt to avoid a backlog of the State Party reviews. There has been discussion about the strengthening of the UN treaty bodies. The Committee members are elected, but they have to be nominated by their State first, which may bear a conflict of interest at the state party level (in case they do not favour strong human rights movement). Currently one issue is e.g. the gender balance in the UN CRPD Committee: from 18 persons only 1 is a woman. Also there is a geographical imbalance (the west is overrepresented). There have been suggestions that State Parties should revise the election procedures for treaty bodies, and actively call for changes and a review of the treaty-body-style in 2020. She ended by saying that human rights should be the prime focus in Europe, and not security and border control. (I liked that)

Laszlo Lovaszy, Independent Expert to the United Nations Committee on the Rights of Persons with Disabilities (UN CRPD Committee) spoke about the role and work in the UN CRPD Committee. He explained that the UN Convention on the Rights of persons with Disabilities does not add new human rights, but rather enforces that all persons with disabilities are entitled to the same rights as others in all areas of life. Accessibility is one of the key elements to enable participation and equal enjoyment of rights. The UN CRPD Committee monitors the implementation of the UN CRPD via State Party reviews, which are done via reports and interactive dialogues, and which have the Concluding Observations as an outcome. Civil society provides input via alternative reports, complementary to State reports. The Optional Protocol to the CRPD offers the option to submit individual complaints (without the precondition of legal capacity), and under OP CRPD article 6, grave and systemic violations can be raised.(which I consider really interesting to explore further, considering the widespread psychiatric torture and ill-treatment in many countries).
The main barriers for the work of the CRPD Committee itself are the amount of time needed for the tasks (the workload) and the limited time of consultation with NGOs. It may happen that reports to the UN CRPD Committee are not submitted on time, which puts even more pressure on the Committee members. State Parties, NGO, NHRI’s and all other stakeholders can help the Committee by being concise and clear in their submissions, e.g. by outlining the problems and desired solutions as clear and analytical as possible. It is also important to the follow up on the implementation of the Concluding Observations in the national context.
(For the personal website of Laszlo Lovaszy, see: https://www.laszlolovaszy.com/ )

Then, 2 proposed candidates for the upcoming UN CRPD Committee elections introduced themselves.

From Malta, it was Michael Debattista, Assistant manager projects and research, Commission for the Rights of Persons with Disabilities (Malta). He explained he had been active in the disability movement since 2000, and has been involved in the national implementation of the UN CRPD in Malta from the start. He introduced himself by showing us a video message dedicated to his candidacy for the election of the UN CRPD Committee. You can see the video on Youtube here: https://www.youtube.com/watch?v=rl2CcF19EBo .

From Poland, Dobroniega Trawkowska introduced herself. She is a social worker with a PhD in Sociology, and declared her life-long commitment to the rights of persons with disabilities. She is trained to find social solutions for social problems, and has a lot of practical experience in social policy making and support projects e.g. on independent living. She stated that she learned a lot from engaging with the disability sector, and ended by saying: ‘persons with disabilities can become the university for others”.

The third European candidate is Jonas Ruskus from Lithuania, who is a candidate for re-election. He was not present at the Workforum.

As a final speaker in this session, An-Sofie Leenknecht, human rights coordinator of EDF, spoke on Users views in the CRPD Committee, and shared experiences of how EDF supported many organizations of persons with disabilities to submit shadow reports, and to participate in the country reviews before the UN CRPD Committee in Geneva.

In the time for questions and answers, there was an interesting remark about the shrinking space for civil society, such as replacing physical consultations with online consultations, budget cuts, stricter rules and funding and so on. It is important to strengthen civil society and to promote meaningful involvement.
It is also important to monitor the European funds, because this can be an effective way to steer towards changes.

At 16.30 the closing session started.
Emmanuelle Grange was replaced by Ima Placencia, senior expert of DG-Employment of the European Commission. She gave a brief summary, and stressed the need to improve the statistics on persons with disabilities, including on access to health. She also highlighted that mainstream media needs to be sensitized. There is still an open discussion about the theme of next year’s Workforum (e.g. access to justice, children, or sexual and reproductive rights), and also it is still open whether there will be 1 topic or more topics. The plan is to make the Workforum more diverse with more stakeholders.

Pat Clarke, vice-president of the European Disability Forum (EDF) highlighted the need for gender balance in the upcoming elections of the UN CRPD Committee at the Conference of State Parties in New York in June 2018. He also highlighted the need to steer onto withdrawal of the Draft Additional Protocol to the Oviedo Convention, which goed against the UN CRPD, and is of great concern for European NGOs and DPOs. It threatens to introduce lower standards in Europe. It is important to keep pressure on the implementation of the Concluding Observations that were issued to the EU by the UN CRPD Committee in 2015.

The final speaker was Andreas Reinalter of the Austrian Presidency, Deputy Head of Unit, Federal Ministry of Labour and Health, Social Affairs and Consumer Protection. He expected that the biggest issue for the EU is still the Brexit and the new budget (and the gap that needs to be filled), but the Austrian presidency will make efforts to ensure that persons with disabilities will not be excluded and European money is spent wisely.

At 17.00 the EC Workforum on the UN CRPD 2018 ended. Ima Placencia stated that the EC Workforum is a tool to facilitate the work of the participants, and she suggested that we should all keep connecting to each other. She then thanked all participants and closed the meeting.

After a brief chat with some participants, I left and I went home, back to Eindhoven by train in several hours. It had been very interesting meeting, and I enjoyed to see the many people who are working on implementing the UN CRPD all across Europe.