CRPD Day of General Discussion art. 19

I went to Geneva from 19 to 20 April 2016 to join the CRPD Committee’s Day of General Discussion on article 19: the right to live independently and to be included in the community (also see: http://www.ohchr.org/EN/HRBodies/CRPD/Pages/CallDGDtoliveindependently.aspx ).
I also went to meet with several active members of WNUSP, and on 20 April I had the long-awaited meeting with a UN Media Officer. This short trip to Geneva was a great experience again. I came back with a great smile.
This blog comes a bit late, because I had trouble accessing internet during my short stay in Geneva, and upon return I have been extremely busy again, juggling tasks, so I needed to find some peace and quiet in my schedule to be able to deal with the load of input of this inspiring trip to Geneva.

I started my travels at Monday 18 April in the evening, and took a late train to Schiphol, where I waited all night, since the night trains do not connect with the south of the country. At a relaxed pace, I used my time to work on the notes for the presentation of WNUSP, since I was planning to register to speak from the floor. Then, directly after landing in Geneva, I went straight to the big UN compounds: Palais des Nations, and managed to find the big conference room no. XIX. I registered on the list for speaking from the floor, and I was perfectly on time to greet and chat with some others.

At 10 AM the first part of the meeting started: Celebrating 10th anniversary of the UN Convention on the Rights of Persons with Disabilities (UN CRPD). The session is archived on video here: http://www.treatybodywebcast.org/crpd-10th-anniversary/

For the occasion of the 10th anniversary of the UN CRPD, a very nice video had been made, where CRPD Committee members explain the meaning of the UN CRPD. The video “Celebrating 10 years of the CRPD” can be found here: https://youtu.be/sQuMh9N5cNQ

Then, there were several speakers, such as Ms. Jyoti Sanghera, Chief, Human Rights and Economic and Social Issues Section, OHCHR, and several representatives from the Group of States Parties Friends to the CRPD (including Mexico, New Zealand and Korea), the chair of the Convention on the Protection of the Rights of all Migrant Workers and Members of their Families, and a representative from IDA. They described what has been done so far to implement and mainstream the rights of the CRPD in the UN system and all its mechanisms, such as the inclusion of the UN CRPD in the Sustainable Development Goals (SDGs), and having a Special Rapporteur on Disability, holding thematic studies and cooperating with other UN partnership programmes and civil society organizations. A lot of progress has been achieved since the adoption of the UN CRPD 10 years ago. The CRPD is the first treaty of the 21st century, and is ground-breaking due to the active participation of civil society in the drafting process, which is unique in history. The CRPD is the fastest ratified Convention: 161 States + 1 regional organization (EU) have ratified within 10 years.

Several representatives of DPOs (Disabled Peoples Organisations) shared their testimonies of how the UN CRPD changed the situation for persons with disabilities in various countries all over the world. Michael Njenga from Users and Survivors of Psychiatry (USP) Kenya described several reforms securing jobs and tenders for persons with disabilities on an equal basis with others. Yet, a lot of work is still to be done to stop the discrimination against persons with disabilities, especially for persons with psychosocial disabilities and women with disabilities.
Bhargavi Davar from Transforming Communities for Inclusion (TCI) Asia described article 5 on equality and non-discrimination as a key right, which broadens the view from disability to inclusion, diversity and reasonable accommodation, and helps our communities to learn how to support each other, which is strongly linked to article 19 as well. However, the shift in Asia is also hard, for example due to the laws and legacies inherited from the colonial times, which exclude persons with hearing impairments, persons with intellectual disabilities, psychosocial disabilities, and multiple disabilities from citizenship. The CRPD and the SDGs offer a guidance for change.

Several other speakers followed, including the chair of the European Organization of Self-Advocates of persons with intellectual disabilities, who spoke about special schools which do not really offer growth towards independence, but teach rather useless skills for obsolete professions, not real labour skills. The CRPD offers a way out.
A representative of the Independent Living Institute spoke about article 29 on participation in political and public life, and highlighted several barriers to political participation, including accessibility and the role of personal assistants, who may take notes or read out speeches on behalf of a person with a disability, which is often not foreseen in laws. The CRPD provides opportunities to address this.
Then a representative of the Sociology Department University in Chile, spoke about the rights of persons with psychosocial disabilities and presented research data illustrating that there are still many attitudinal barriers to autonomy and independence, such as overprotection, unemployment, and discrimination in virtually all aspects of life. Next to that, there are also forced treatments for social adaptation, and it is noted that psychiatry alienates persons from the community, instead of enabling inclusion. The paradigm shift as enshrined in the CRPD is very important.
The co-chair of the European Network on Independent Living (ENIL) spoke about how the CRPD addresses human rights violations that persons with disabilities are facing for ages, and linked to article 9 accessibility and article 21 freedom of expression and opinion and access to information. She emphasized that inaccessibility and exclusion puts people in need of special services, which leads to segregation, while the CRPD calls for the widest possible scope of access to public resources to facilitate inclusion. Also the practices of substitute decision making that have been in place for long, need to be stopped, and persons with disabilities have the right to speak for themselves. She added: human rights based policies are not a matter of wealth or money. Exclusion costs nations more than inclusion.

It was a nice session, stressing the value of the UN CRPD.

From 11.45 AM on the Day of General Discussion on CRPD article 19 on living independently and being included in the community started. The full video of the Day of General Discussion on CRPD article 19 can be found here: http://www.treatybodywebcast.org/day-of-general-discussion-on-article-19/

The programme comprised 3 thematic sessions with each a list of speakers. It was a lot to take in.

The first session was titled: Interactive Panel on Independent living schemes: Autonomy, self-determination and personal choice in law, policy and programmes, facilitated by Mrs. Theresia Degener, Vice Chair of the CRPD Committee (member of the working group on article 19).
In this session, Michael Njenga spoke about the challenges for persons with psychosocial disabilities in the African context related to article 19, and stressed the key role families play in African communities. The overreliance on family-based support does not guarantee that the needs of persons with disabilities are met, considering the huge challenge to balance the needs of the local community, facing poverty and often absence of state support, with the needs of persons with disabilities. Unemployment makes persons highly dependent on their families, giving tension to freedom and choice. Obviously, poverty puts serious limits to choices and autonomy. In African countries, services are mostly not available in the communities or are not responsive to the needs of persons with disabilities. Also harmful cultural practices exist, like prayer camps and civil detention. The biggest barrier for persons with psychosocial disabilities is the community perceptions as being dangerous or incapable, resulting in exclusion from the communities, and similarly, the mental health law which also allows for deprivation of legal capacity and forced institutionalization. Inclusion needs to be shaped in all layers of the community, including in education, justice systems, the availability of services, employment, poverty relief, and supports services to enable persons with disabilities to access the community services.
He also noted that sometimes, psychosocial disabilities are not seen as ‘real’ disabilities, resulting in exclusion of persons with psychosocial disabilities from the disability supports services in the community, which is of course very worrying.

Bhargavi Davar of TCI Asia spoke about what is important for persons with psychosocial disabilities in Asia in relation to article 19, and stressed the need for availability of a continuum of diverse community based services, and interlinking services, to prevent that people fall through. Families are part of the continuity of support in the lives of persons with disabilities, and should be supported as such, while taking into account that families may not always be supportive and may have conflicts of interests as well. States should provide a range of actions to support communities to foster inclusion. The mental health and incapacity laws, as colonial baggage, have stimulated the ousting of persons with psychosocial disabilities from their families and communities, against their will. The focus on long term residential care did not foster long term community development, nor increased social support networks, but led to violence and abuse. The Asian region is strong in a collective way of living, and has many examples of community based practices. Alternatives to the medical model approach include the clubhouse model, the hostel model, circles of care, peer support during crisis including a neighbourhood alert system, foster care giving, companionship, and functional proxy relationships, to name a few. The CRPD is moving State Parties to not only focus on rules and boundaries, but to actively foster emotionally sustainable and inclusive communities with less chance of people falling out, which is a great development in itself.

Other speakers included Klaus Lachwitz of the International Disability Alliance (IDA) who linked article 12 to article 19, and stated: Without alternatives, there are no choices. We have to build up the community based services that do not yet exist, to support persons with disabilities and to support their families in the community.
Rannveig Traustadóttir of the Center for Disability Studies in Iceland spoke about how national and local governments can work together, especially in places where the responsibility over services has been decentralized, highlighting the risk of disjuncture between the local and national level of implementation, and the increasing variety of service provision throughout one country, which is making it harder for persons with disabilities to move to another location. Strong national legislation is needed, as well as implementation and monitoring mechanisms as is outlined in article 33, who are well-resourced and having meaningful influence and knowledge about the CRPD. The national level should be an good example in the level of knowledge of the CRPD.

Martha Stickings from the EU Fundamental Rights Agency (FRA) spoke about EU-based research and the development of indicators for monitoring the effectiveness of various implementation strategies. Clarifying the meaning of key terminology is a crucial component for developing clear and consistent standards.
Peter Mittler from Dementia Alliance International expressed concerns on the rights of older persons, and stressed the impact of dementia-type diagnoses, which often lead to a sudden loss of fundamental rights at older age, quite similar to the situation of persons with psychosocial disabilities, and called for active awareness raising of the rights of older persons under the UN CRPD framework.

Shanta Rau Barriga of Human Rights Watch spoke about the link between article 14 and article 19, and stressed that the right to live in the community comprises much more than just not residing in an institution. It is about being not restricted as a person. There are various ways of being isolated, and even if persons with disabilities live in the community, there are often barriers in access to the community, to education, employment, health care, leisure activities, or gaps in the interlinkages of services, which limits or disables the participation of persons with disabilities, and confines them to their homes. In many countries, laws are still allowing for involuntary detention, involuntary hospitalization and forced treatment, particularly for persons with psychosocial disabilities, which seriously limits meaningful choices, including a lack of chances for persons with disabilities to challenge such detention. The impact of involuntary detention, exclusion and forced treatments on a person’s life is dramatic, as can also be seen in the recent report of Human Rights Watch titled “Living in hell “ (see: https://www.hrw.org/report/2016/03/21/living-hell/abuses-against-people-psychosocial-disabilities-indonesia ) which documents horrifying practices of shackling of persons with psychosocial disabilities in Indonesia, depriving them of any interaction with their communities, due to misconceptions about mental health. “Leaving no-one behind” means that there is a right to support and assistance, to fulfil the right to live in community, including for people with high support needs, who are currently at high risk of spending their entire life in an institution, and in de-institutionalization processes they are often the last ones to be given the opportunity to leave. The enjoyment of inclusion is right for every person, without exception.

During lunch time, I met with Michael Njenga and Bhargavi Davar, and we had a nice lunch together, discussing WNUSPs plans, such as participation in the upcoming Conference of State Parties to the CRPD, and the WNUSP expert meeting in Pune India and our possibilities at the INTAR-conference.

*
After the lunch, at 15.00 PM, the second session started, titled: Interactive Panel on Diversity and Delivery of Services and Financial dimension for the effective implementation of article 19, facilitated by Mr. Damjan Tatic, member of the CRPD Committee (member of the working group on article 19).

Gerard Quinn of the Centre for Disability Law & Policy of the University of Galway spoke about the planning and resource timeline for the transition to deinstitutionalization and community based support. Since the CRPD requires a profound shift in ideas and resources, there is some notion of progressive achievement. Changing a 60 bed unit, to a 20 bed unit, and then to a 5 bed unit is not progressive, and may even be regression. Regardless of resources and progressive achievement, there are also immediate obligations for states to comply, including taking stock of human rights, identifying the barriers to change, and setting up a clear roadmap for their removal. Another immediate obligation is: no more admissions into institutions, no more money to institutions, and no more institutions themselves. There are 2 different timelines, one is ending institutionalization and the other is setting up support for everybody in the community. It matters which resources will be dedicated and how the funding will be transferred from an ineffective system to a completely different system, and what is the catch-up plan with a conscious and realistic prospect, and not for example a 120 year timeline for its implementation.

Adolf Ratzka of the Independent Living Institute and member of ENIL, emphasized the value of personal assistance, and stressed that human rights are not limited to a certain age group.
Jamie Bolling of ENIL highlighted that the concept of independent living is not ‘for rich countries only’, although there may be difference between cultures, such as in the role of the state versus the role of families. But in practice, persons with disabilities want to be part of their communities, no matter where they are. The common heard argument that institutions are needed because of the assumption that some people have to live there, is wrong. The Personal Assistance system in Sweden for example shows that it is possible for persons with disabilities who were excluded before, to live in their own home and have a much better quality of life.

Facundo Chavez Penillas, Disability Advisor of OHCHR, also stressed the link between article 19 and other conditions, such as the full prohibition of deprivation of liberty on the basis of disability under article 14, and the implementation of article 12 to ensure the effective possibility of exercising the choice under article 19, and the right to have control over the support in line with one’s own wishes and preferences, for which direct payment via personal budgets shows to be an effective tool.
There is also a linkage between social protection and provision of services, as is also explored in the report of the Special Rapporteur on the Rights of Persons with Disabilities, Mrs. Catalina Devandas, on the need to include independent living services in the social protection schemes, which should consider not only poverty relief, but also the personal costs for persons with disabilities to participate effectively. It is important to recognize possible alternatives to access necessary supports services in communities in various contexts. Safeguards must be put in place against medical and charity-based approaches, in law and policy and practice, to ensure moving to support services that are human rights based and person centred. Support to households with persons with disabilities can help to reduce rates of institutionalization. Women are often stigmatized as the natural caregiver of family members with disabilities, impacting their possibilities to develop their own life plans, and it is important to support households without a gender-biased approach.

Fadia Farah from Inclusion International mentioned that for persons with intellectual disabilities to develop as a self-advocates, in general the family plays an important role in relation to self-esteem and the attitudes of others in the community, and families need to be supported and empowered with information and the availability of services. Also inclusive education and safe spaces to talk are very important. Institutionalization has a very negative impact on the wellbeing and development of persons with intellectual disabilities, and reduces the ability to communicate with others.

Abner Manlapaz, of Life Haven Centre for Independent Living in the Philippines, spoke about the attempts to start a project with personal assistance in the Philippines, and the persistent barriers, such as a lack of political attention and false assumptions on costliness and non-implementability in developing countries. There is a big difference between having family members as care givers, and having support by the independent living model. With family, persons cannot exercise their autonomy and independence, but have to adjust to when the family member has time, and this affects the family relations, the daily activities of persons with disabilities, and their productivity, and altogether this means that persons with disabilities are not able to live independently on an equal basis with other persons, because their assistance and support is not recognized as a human right, which is now changing by the UN CRPD.

Oliver Lewis of the Mental Disability Advocacy Centre (MDAC) stated that from a lawyer-perspective, the lack of recognition in the national law is the main challenge to make independent living a right, which judges can order. Deinstitutionalization strategies often lack measurable indicators for progress, or might set unreasonably long timelines, or even exclude certain groups of people, such as children or persons with psychosocial disabilities. Article 19 is not just deinstitutionalization or evacuation from institutions, but comprises a positive right with a focus on inclusion in the community and accessibility and support, which requires investments in the community, such as inclusive education, vocational training, supports for employment, access to housing and so on. Governments should treat persons who have been detained in institutions as victims of torture and inhuman, cruel and degrading treatment and punishment, and such victims are under international law entitled to social, cognitive and legal recovery, rehabilitation and social integration (CRPD art 16.4 and 25 and 26). Tragically, de-institutionalization often appears to be only trans-institutionalization, and often means shifting to smaller, newer, less smelly institutions with other names (“Living centres”, “Community homes”, “Protected homes”), but still featuring an institutionalized culture, without choices. Articles 12 and 19 need to be dealt with in parallel, and should not be used to chunk one another.

There was only very little time left to allow some speakers from the floor, which included amongst others a call to reaffirm that forced institutionalization, and even just the threat of forced institutionalization, is in violation of articles 14 and 15, as is also stated in the General Comment on article 12 and the Guidelines on article 14, and which needs to be reiterated in the upcoming General Comment on article 19. The provision of non-medical supports services that have no connection with mental health services is also important for persons who are abused by psychiatric violence, as well as reparations.

*
After a small break, around 16.30 the third and last session started, which was titled: Interactive panel on De-institutionalization and Community-based services: the way forward. The session was facilitated by Mr. Stig Langvad, member of the CRPD Committee (member of the working group on article 19), who again stressed that deinstitutionalization is not about where you live, but about how you are able to live independently.

Rosangela Berman Bieler of Unicef spoke about expanding the discussion on independent living also to children with disabilities, who are often seen as not independent. Advocacy is now often done by families of children with disabilities, but we need adults who were children with disabilities before, to raise their voice, which is different than the voice of the families. There are many reasons why children with disabilities should not be placed in institutions, because the lack of love harms their development in all senses, nor should there be only focus on foster care. Families should be supported to keep their children, and it’s important to build the services in the community. The costs of institutionalization and associated harm is much higher, but even if they are not, the rights of the child are much more relevant than the costs. The focus should now be on investing in the community, while institutions are being closed.

Senada Halilcevic, President of European Platform of Self-Advocates, emphasized that to ensure independent living, it is necessary to change laws and implement laws according to the Convention, because existing laws hinder or prevent persons to live independently. Work depends on the ability to work, but also on the support to be able to work. Article 24 is also very important in that regard. Many persons with disabilities are educated in obsolete professions, making it hard to find a job, which is of crucial importance to live independently. It is important to demand as much as possible from the Convention, because we are not asking something that is impossible, but we are asking for something that belongs to every human being, and we are human beings. We should be actively participating in the creation of policies in our communities, so that we can be the generation that leaves an inheritance to another generation, a possibility to live independently, and that we have the power to ask what belongs to us.

Sookkyung Park, activist and researcher on deinstitutionalization, spoke about the current challenges, barriers and general principles for deinstitutionalization in Korea. Korea has a western model of institutionalization since late 19th century, since then institutionalization has generally increased by 4-5% per year. Despite political promises, there has been no political support for deinstitutionalization, and confusion over the concept of deinstitutionalization makes it necessary to define a clear concept of deinstitutionalization and independent living. The core problems of implementing deinstitutionalization are conflicts between stakeholders, and a lack of awareness in the community. Korean organizations are now building institutions in developing countries as a part of their international development programme, in the same way as institutions were introduced to Korea as a charitable activity by foreign missionaries in the past. The fact that institutionalization is spreading in developing countries is of deep concern. The deinstitutionalization strategy which is being developed in Korea could also be useful to other countries similar to Korea, and comprises a detailed and practical step programme.

Juan Cobeñas, Self Advocate of the Asociación Azul for Independent Living of Persons with Disabilities in Argentina, explained that persons who use alternative communicative systems are very vulnerable in terms of being heard and being respected in decisions, but getting a voice is vital to move from a closed life to empowerment and independence. It is necessary to have control over your own support system, to be able to speak out. Independent living requires available services which are properly managed by the person self. For persons with high support needs, everything is harder. To resolve the challenges, consultation with persons with disabilities who live independent is vital, as well as the training of Personal Assistants. To be able to take all necessary steps, procedures should be easy for persons with disabilities, making it easier to overcome obstacles. Also, a system can ensure that organizations archive how the community can properly pass on the information.

Kapka Panayotova of ENIL was the last speaker, and highlighted the value of empowerment and support instead of the care-paradigm of pity and charity which makes one feel as if going to a movie or a holiday is a disproportionate desire.

Then it was time for the Concluding comments and closing remarks, with Danlami Basharu, Member of CRPD Committee (member of the working group on article 19) as a moderator.

María Virginia Brás Gomes, Member of UN Committee on Economic, Social and Cultural Rights mentioned that General Comments offer guidance to State Parties to overcome gaps in implementation, monitoring and information. For core binding human rights obligations, there is a minimum essential level of obligation. No General Comment is perfect, but it offers guidance for interpretation and an update of the progress in the understanding of rights under the treaties.

Theresia Degener, CRPD Committee Vice-Chair, spoke the closing words at the end, and thanked everyone for the fruitful discussion, which shows clearly that persons with disabilities everywhere want to live in the community, and not in institutions, nor depending on families, and certainly not under forced institutionalization. Across all ages, sexes, cultures, religions etcetera, we all want choice. Institutions are harmful. They originated in the western world, and are now spreading over the world, which is very concerning. Inaccessibility equals exclusion and making people dependent. Article 19 is a progressive right, combining freedom and equality, which are not in conflict, but are complementary to each other.

Due to the very busy programme, there had been no time to speak from the floor, - instead, the opportunity was offered to submit a bullet point list corresponding to the format of general comments. I sent what I had prepared with support from the WNUSP team earlier.

*
After this very long Day of General Discussion on CRPD article 19, we were all invited to join the reception for the celebration of the 10th anniversary of the UN CRPD at the Serpent Bar downstairs. First there were several speeches complimenting and congratulating the CRPD Committee and all its supporters for the achievements of the past decade(s). Then a band started playing, and a nice buffet with bites and drinks was opened. I met a lot of nice people, including a representative of the Permanent Mission of New Zealand (which is the country where Family Group Conferencing originated), and a student from Korea, who shared her interesting report on the process of de-institutionalization in Korea.

In the evening, Michael and I enjoyed dinner together in a nice pizzeria and then we went back to the Hotel Silva. Unfortunately, internet didn’t work, and after a long time of trying I gave up and went to sleep, which I really needed after such a long day and the long nightly journey before.

The next day I met Michael at 8 AM at breakfast, and then I accompanied him to the bus to the airport. He was leaving back to Kenya again. I had enough time to take a nice walk before going to Palais Wilson, where I had an appointment at 11 AM for having an interview with UN Media Officer Liz. We talked somewhat informally about my personal experiences, and my personal struggle for recognition and change, and Liz decided that the interview will be followed up, because they would like to use my case as an illustration of the value of the UN CRPD. I felt really honoured of course, and very proud and happy. It will probably strengthen the awareness that forced psychiatry is rejected by the UN CRPD, and it might also help me to be heard in the national context, and of course, it is very cool to be featured by UN Media:)

So I was feeling really great after this interview, and again, I experienced that I left the UN atmosphere once more inspired and empowered with new possibilities and new thoughts, new hopes and new perspectives. It was lovely to be in Geneva. I floated home, and celebrated my success with some friends, before really heading home, and by now, I am pretty much recovered from another exciting and exhausting trip to Geneva.