DREAM Researchers Participate in Round-table Discussion on Human Rights and Disability

""DREAM researchers, Ieva Eskyte, Anthony Giannoumis and Magdi Birtha participated in a round-table discussion titled Human Rights and Disability: between choice and control at Vytautas Magnus University in Kaunas Lithuania on 21st October. The event aimed to facilitate  discussion and raise awareness on the importance of disability studies and disability rights.

The round-table addressed the principles of the United Nations Convention on the Rights of Persons with Disabilities stating,

Since the key message of the Convention on the Rights of Persons with Disabilities (2006) is that disabled people have to exercise all human rights and fundamental freedoms equally with non-disabled citizens, the purpose of the meeting is to discuss disability and human rights issues in different contexts. For instance, different models of disability will be discussed from Scandinavian, British and Lithuanian perspectives. In addition, the relation between accessibility, disability movement and private markets will be analysed. Special attention will be paid to disability research, ethics and methods.

Practitioners, scholars and graduate students from a variety of disciplines presented their professional and academic experiences in the field of disability and human rights.

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The full program included,

  • Welcome &  Some Thoughts about Social Sensitivity, Reciprocity & Dialogue. Dean prof. Jonas Ruškus of Faculty of Social Sciences
  • Vytautas Magnus University, People with Disabilities and the Right to Reveal Potential. Ieva Danilevičienė, Vytautas Magnus University
  • The impact of family and friends social support on accepting mobility impairments. Laura Alčiauskaitė, dr. Liuda Šinkariova, Vytautas Magnus University
  • A comparative case study of e-accessibility policy implementation in the United Kingdom, Norway and the United States. G. Anthony Giannoumis, The Norwegian Social Research Institute
  • Information provision in the mainstream private market: business practices and disabled customers’ realities. Ieva Eskytė, University of Leeds, Centre for Disability Studies, UK
  • Participation of persons with disabilities in policy and decision-making processes. Magdi Birtha, Centre for Disability Law and Policy, National University of Ireland, Galway

DREAM would like to warmly thank the conveners at Vytautas Magnus University for the opportunity to work together in realizing the rights of persons with disabilities.

UN CRPD as a real engine of change – training experiences from Moldova

ImageThe DREAM project does not only train young research fellows to be the ‘future generation’ of disability rights academics, but goes beyond and guarantees the learning experience from excellent international stakeholders through a pulsing collaboration. Being involved in their important work may help us to become social entrepreneurs and take active part in the social change around the implementation of the UN Convention on the Rights of Persons with Disabilities (CRPD). One of our associate partners is the Mental Disability Advocacy Centre (MDAC), international and independent human rights NGO based in Budapest, Hungary. Since its foundation in 2002, MDAC is working in more than 15 countries across the world advocating the rights of persons with intellectual and psychosocial disabilities. These people are told to be ‘the most marginalized among the most marginalized’ therefore it is essential to empower their organisations and address their current human rights situation. More information on the work and projects of MDAC is available at: www.mdac.info

I had my first professional and personal connection with inspiring staff of MDAC back in 2010 attending their summer school in Budapest. A real mind changing experience to spend two weeks with activists and advocates from all around the world discussing the possible interpretations of articles of the Convention. The ways of translating abstract legal text into practice and apply it in everyday advocacy work is very important indeed. As much as I like to be in academia and doing my PhD at the Centre for Disability Law and Policy NUI Galway, I somehow miss the ‘action on the ground’ when one can really feel the power of change.

I was delighted that MDAC asked me to join their trip to Chisinau, Moldova and to train government and civil society representatives on the implementation of Article 33 CRPD. This article is the most comprehensive ever, included in international human rights treaties. What makes it innovative is the obligation to set up a framework with one or more independent element to monitor the CRPD. Nevertheless it gives an exact role to government to serve as focal point and coordinate national law and policy-making in a CRPD compliant way. The third component of the triangular Article 33 framework is the involvement of civil society and in particular persons with disabilities whose active collaboration with the government and NHRI is rather unprecedented. We live in a fascinating time, when the mantra of the Convention ‘Nothing about us without us!’ is becoming reality and State Parties can either pioneer or fail in making the first effective steps towards a more inclusive society.

Moldova is a developing country in Eastern Europe, who ratified the Convention on 21 September 2010. Thus, all the provisions articulated in the CRPD are legally binding to the country. The training was organized by UNDP Moldova, and without their local knowledge it would have been a real challenge to understand local politics and get relevant participants around the table. The training was a great learning experience for us as well. It has been emphasized several times that there is no perfect solution yet where to catch up, there are different solutions chosen by State Parties, some of them are maybe more promising than others. We therefore offered to present some of these international examples and discuss what could be used in the Moldovan context. On the first day, Oliver Lewis (Executive director of MDAC) and myself had about 20 civil servants in the room representing various departments of the government (Ministry of Education, Ministry of Justice, Ministry of Transport, Ministry of Culture etc.). Their interest is definitely a good sign of commitment. The designated focal point under Article 33.1, the Ministry of Labour, Social Protection and Family also attended the event. We aimed to help them to better understand the concept of the CRPD, for instance the paradigm shift, the change from the medical to the social/human rights model or the concept of civil society participation. It was important to overview how to read certain articles of the Convention with the eyes of law makers and thinking in a structured manner when organising policy-making in disability related areas. Successful implementation of the CRPD requires the change of attitudes and mindset towards people with disabilities therefore we tried to capacitate participants through group activities to think about social barriers instead of individual limitations when it comes to disability. Generally speaking, Moldova has a great Article 33.1 structure established with a Focal Point and Ministries who already worked together when they put together the State Report to the UN Committee last year.

Article 33.2 CRPD requires the National Human Rights Institution -which is the Ombudsman in the case of Moldova- and civil society to work together in monitoring the implementation of the Convention. The Convention has a good reason to ask for this collaboration. The NHRI can bring its experience in general human rights monitoring, and most importantly serve as the independent element in the mechanism. Independence shall be guaranteed by its mandate and articulated in the distance from the government. In fairness, the Moldavian Ombudsman has been classified by the International Coordinating Committee (ICC) as ‘B’ status human rights institution due to the fact it is relying on the government when it comes to approval of yearly budget. It raises concerns towards the independence of the Ombudsman Office. The Ombudsman and civil society could not agree on the ideal form of collaboration within the framework, therefore there is no monitoring happening in this sense. UNDP has proposed a framework of 15 members – 3 delegated by the Ombudsman Office and the rest representing civil society. This level of presence in the framework did not satisfy the Ombudsman who sort of stepped out from the framework. Civilian forces intend to do the work on their own, however they are lacking coordination and adequate sources to provide secretariat for the framework. We strongly emphasized at a work lunch and a private meeting we had with the Ombudsman and his colleagues the necessity of the Ombudsman’s presence in the framework. This is an absolute prerequisite to achieve compliance with the CRPD. Representation of civil society is a very challenging issue articulated in Article 4.3 and 33.3 CRPD both from the structural and the functional point of view. Persons with disabilities have always been marginalized therefore capacity-building is a must to make them aware of their rights and the most effective ways to participate in policy-and decision-making processes. Selecting the organizations, who can represent persons with disabilities at high-level discussions is not an easy task to do. And who is entitled to decide? Some voices can be left out just because those are smaller or younger DPOs than the well-known traditional disability NGOs. In Moldova, the Ombudsman prefers to work with the NGOs who consist the most member organizations, however we know that they often function on an old, soviet-type bureaucratic base. The second day of the training has brought about 30 self-advocates to Chisinau from different parts of the country. They wanted to hear about how to organize the work of monitoring, what are the rights, which can be monitored and how is it happening in other countries. One could feel such a strong buzz in the room while talking and sharing experiences with these very powerful advocates who want to make a real change.

Moldova certainly has to struggle with financial burdens due to its economic situation, however there are issues mainly in the area of civil and political rights, which do not require major investments, but rather commitment from the State Party to comply with its international human rights obligations. The willingness to collaborate with experts from the disability movement is really one of the key prerequisites to ensure the spirit of the Convention is becoming reality at the National level.

The author would like to thank MDAC for the opportunity to participate as a co-trainer in their event in Moldova 11-12 March 2013.

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Remove another barrier! – Literature of persons with intellectual disabilities

While spending the next couple of months as study visitor at the EU Agency for Fundamental Rights and enjoying charming Vienna with all of its monumental buildings and lovely Christmas markets, I am trying to make some connections with the local disability movement. However language barriers prevent me from getting easily aware of the important initiatives and projects of NGOs, today I had the chance to attend a really inspiring (and progressive) event: A literature prize award (further information on the ‘Literaturpreis Ohrenschmaus’ is available at: http://ohrenschmaus.net/ ). Why was it that special? The prize was created six years ago for writers with intellectual disabilities who may submit their prose or poems to be reviewed by a prominent jury. This year they received 146 texts and 3000 Euro was awarded to the winners. The ceremonial event attracted a lot of people, both disabled and non-disabled. Friends, families, fans of literature, academics, human rights activists, editors, book publishers etc. Well-known Austrian actors and actresses read some of the pieces before the awards were given to the winners. The whole event was organised in the Ovalhalle of the Museumsquartier, a fancy artistic spot in town, young and sparkling contemporary place.

ImageTonight was a fantastic occasion to experience the so-called paradigm shift articulated in the UN Convention on the Rights of Persons with Disabilities. The big words better get formulated in every day life. When persons with disabilities are not treated as pitiful objects of charities any more, but being equal citizens and holding the same rights as any one else. In my view, our society is very much literacy oriented, therefore ensuring the accessibility for persons with intellectual disabilities is one of the greatest challenges regarding the implementation process of the CRPD. Making our overcomplicated world rather simple and understandable is more difficult than doing some reconstruction or developing handy tools. Some easy-to-read documents do not necessarily help to remove all those barriers. Acknowledging that persons with intellectual disabilities are able to contribute to literature will certainly do. Such an event may narrow the gap between the historically exclusive literary canon and authors who happen to have a disability. Literature as a subjective art should be an open space for everybody to verbalize his or her messages regardless of any disabilities. Talented authors with a disability should be read and respected as others. Or at least be known. I was delighted to get to know some excellent Austrian writers tonight.

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How constructive a dialogue could be? – Hungary’s State Report has been reviewed by the UN CRPD Committee

The constructive dialogue on the first periodic report of the Hungarian Government to the UN CRPD Committee was held in Geneva, 20-21 September 2012. The hearing is a great opportunity to exchange information on what is happening in a certain country regarding the implementation of the Convention on the Rights of Persons with Disabilities. A List of issues is previously provided by the Committee to highlight some of the concerning questions and to enable State Parties to prepare detailed information on their work. It is important to emphasize that the dialogue aims to help State Parties to better implement an International Human Rights Instrument, which the country signed and ratified. This shows its commitment to comply with those human rights standards.  Therefore it shall be a common interest of the Governments and the Committees to have a fruitful discussion during the reporting process and besides acknowledging the achievements also highlight in which areas the country needs to make more progress.

Hungary was the first European country ratified the UN CRPD (date of ratification of the CRPD: 30 March 2007) and its Optional Protocol (date of ratification of the Optional Protocol: 20 July 2007). Thus Hungary had 5 years to make progress in the implementation.

Rapporteur of the Hungarian State Report acknowledged in his opening the number of achievements especially in the field of sign language law and non-discrimination legislation. He mentioned in his presentation that Hungarian DPOs did a magnificent job during the preparations by providing the Committee with valuable reports and data. He made a remark on “We have to express regret we do not have DPO representatives here in the constructive dialogue.” The participation of persons with disabilities in all level of policy and decision-making and monitoring the Convention is a prerequisite of successful implementation, therefore it is a pity the Hungarian disability movement could not contribute to the constructive dialogue with their knowledge and first hand experience on the issues.

In the following I am giving a brief summary on some of the main areas were highlighted by the Committee during the session and give also my personal expressions about the hearing.

In the opening presentation, the Head of Delegation referred to the CRPD as a guideline, countries may live up to some day depending on their economic situation. Member of the CRPD Committee made a clear remark whether CRPD is a human rights instrument, which shall be legally implemented in each State Parties in a reasonable time.  Afterwards members of the CRPD Committee asked very precise questions based on the List of issues covering all the rights need to be guaranteed to persons with disabilities to achieve equal participation and full integration in our society. First of all, the Committee raised the issue that the definition of disability in Hungarian law excludes persons with psychosocial disabilities whose rights therefore cannot be protected in any ways in the scope of the CRPD. The Government is planning to review the Disability Act 1998 and involve a definition which is in line with the Convention.

However it is an improvement in Hungarian legislation whether persons with disabilities cannot be deprived automatically from the right to vote anymore, the Committee expressed its concern that according to the new Constitution (entered into force 1 January 2012) right to vote could be taken away on an individual court decision basis. The Committee was interested in the raison d’etre of such a deprivation in the new law despite of decision of the Venice Committee and Hungary’s obligation to implement the Convention. They also asked a question on the situation of those citizens with disabilities who have previously lost their right to vote. Article 12 CRPD on the equal recognition before the law and legal capacity was one of the most discussed topics during the session. The Committee complimented the Government for introducing supported decision-making in the draft of the new Civil Code, but asked for further information on the still existing forms of substantive decision-making and the possibility to get incapacitated. The delegation argued that it will only happen in particular cases with the possibility of regular revisions, it was emphasized that the right to make one’s own decisions is clearly guaranteed under CRPD, therefore the new Civil Code won’t be compliant with the CRPD.

As in many other Central Eastern European countries, there are still about 25 000 persons with disabilities living in big institutions in Hungary which is unacceptable in the scope of the Convention. The CRPD Committee welcomed that the Government has put together a deinstitutionalization strategy, but found the 30 years timeframe they are aiming way too long. Concerns were also expressed on the three types of housing forms they were mentioning as so-called ‘living centres’ could accommodate up to 50 people. This would probably create small institutions instead of ensuring reasonable accommodation and the possibility that one could live integrated in the community as anyone else.

There were a number of questions considering the involvement of persons with disabilities. “We would like to know what is precisely the mechanism used by the State Party to ensure civil society participation during the harmonization, planning phase when domesticating the Convention. I want to know directly at what level DPOs are involved”. The delegation has referred to the role of the National Disability Council who seems to be the major and only guaranteed formal platform for consultations between government and civil society. The Council indeed has a great number of government representatives among its members (13 out of the 27 members), therefore its independence when comes to monitoring is strongly questionable. The Committee asked the government to designate an independent, Paris Principle compliant framework to monitor the implementation of the Convention. There was a misunderstanding in the concept of involvement as the government was keep referring to a few meetings they held to discuss some of the draft legislation or strategy they put together with civilian forces.  This does not fulfil the requirement of involving the disability movement at all levels of policy –and decision-making process.

One could have the impression that there were two different discussions taking place in Palais Wilson over the last two days. While the CRPD Committee has raised important, precise and concerned questions relating to the implementation of the Convention in Hungary, the delegation of the Government failed to give very clear answers and a timeline on the implementation process. Unfortunately most of the answers of the delegation were capturing Hungarian legislation and services in general without a special regard to persons with disabilities. A great example may be when a Committee member asked for direct measures to see if there are any policies to protect women and children with disabilities, the representative of the Ministry read out a number of general programmes on crisis centres and initiatives to decrease domestic violence. At the end of the first day, one of the Committee members warned the Government that neglecting to follow the guidelines of the Committee on the issues being discussed is sort of a violation of the Convention itself. Sadly, most delegates used a non-CRPD compliant language during their presentations and represented rather the old medical model of disability (some of the words have been used: ‘pitiful’, ‘curing’, ‘genetically injured’, ‘healthy children versus disabled children in schools’) instead of considering it exclusively as a human rights issue. It may show their unfamiliarity with the Convention and its principles. There were several remarks on the bad interpretation therefore some of the questions may have been misunderstood.

In summary, the government of Hungary could have used this opportunity to make a more constructive dialogue with the Committee and looking for great solutions together to better promote the rights of persons with disabilities. Might be useful for any delegations to consider in the future a more profound preparation to be able to answer the excellent and detailed questions of the Committee and to have a more precise focus on the CRPD and its implications to national legislation. It is a common interest of State Parties to use the limited time and resources of the Committee in the most effective way. Hopefully, the Concluding Observations of the Committee will serve as a guideline and help the committed work of Hungary to continue the implementation process of the CRPD and achieve full compliance as soon as possible.

“Nothing about Article 33.3 CRPD without us!”

Data collection on the involvement of persons with disabilities

According to Article 33.3 UN CRPD Civil society, in particular persons with disabilities and their representative organizations shall be involved and participate fully in the monitoring process of the Convention. Article 4.3 UN CRPD refers to the importance of involving persons with disabilities in all policy – and decision making processes concerning issues relating to their lives. Preamble (o) also emphasizes that persons with disabilities should be actively involved in decision-making processes, policies and programmes, including those directly concerning them.

Referring to the paradigm shift and to the slogan “Nothing about us without us!” the effective and active involvement of persons with disabilities should be considered as one of the key elements of successful implementation of the CRPD. Most Member States are still in the process of establishing their Article 33.2 framework to promote, protect and monitor the implementation of the CRPD therefore it is very important to ensure the participation of DPOs from the very first stage. Our knowledge is very limited on what kind of initiatives or good practices are taking place in the Member States in order to provide active involvement instead of formal consultations for persons with disabilities.

The aim of this research is to collect qualitative data directly from members of the disability movement on the current National level participation and to explore key elements of effective and active involvement.

Keeping in mind that no one, but persons with disabilities can contribute the best in designing indicators which could measure effectiveness of their participation, the concept and structure of the questionnaire was developed in an inclusive way in close consultation with the disability movement. The questionnaire is now open to answer until 29 June 2012. The study which will analyze contribution received from members of the disability movement could be useful in terms of exchanging experiences on good practices and also to discover common struggles and gaps in the National level involvement.
      

The questionnaire is available on the website of the European Disability Forum: http://www.edf-feph.org/Page_Generale.asp?DocID=13854&thebloc=30214

If you feel your voice should be taken into account, please answer the questionnaire and send it back to one of the following e-mail addresses by 29 June:

magdi.birtha@edf-feph.orgmagdolna.birtha@nuigalway.ie

Thank you for your cooperation. 

The value of life – Eugenics strikes back as human right in the 21st century?

ImageDespite the efforts and overarching results of the disability rights movement to protect human rights of persons with disabilities there have been a number of concerns lately regarding the promotion of abortion in case the fetus has a chance for any kind of disability. In the following, I am trying to give a brief overview on the debate by pointing out main aspects and challenges.

Since the end of the Second World War the International community declared in international human rights law that no one shall be deprived of his or her life. Moreover considering the right to life as a fundamental right, it shall be protected by law according to the Convention for the Protection of Human Rights and Fundamental Freedom (Article 2.). One could expect that the existence of the UN Convention on the Rights of Persons with Disabilities guarantees that no one questions the raison d’etre of those who are labeled as “disabled” in our society. Disability is an evolving concept and we, academics, human rights activists and members of the disability movement hope that the paradigm shift from the medical to the social model has already taken place and is acknowledged by all. Disability shall be considered a human rights issue. It is also important to admit that the main challenge in integrating persons with disabilities, is not their physical or mental impairment, but the barriers which were historically set-up by the society itself.

A few months ago an article was published by Alberto Giublini and Francesca Minerva discussing the possibilities of “after-birth abortion”.  Eugenics seems to arise and spread more and more widely in the society. Not surprising after the developments of genetic and reproductive technologies in the end 20th century.  The authors argue that in cases where an abnormality of the fetus was not detected during the pregnancy, there should be an opportunity to kill the new-born baby. They are referring to the same moral-status of the newborn and the fetus and claiming that “killing a newborn could be ethically permissible in all the circumstances where abortion would be”.

The wording of the article is very controversial. Terms like “Abnormality”, “moral value”, “potential for acceptable life”,” normal life versus down-syndrome” are reminders of the Nazi ideology and directly reference “racial hygiene”. Those words and ideas have already led to the extermination of the “undesired population” during the Holocaust. Learning the lesson from the Second World War, the International community has been aiming to protect the right to life of all human beings. The Convention for the Protection of Human Right and Fundamental Freedom clearly states in Article 2 that everyone’s right to life shall be protected by law.

On one hand, the issue has an obvious human rights aspect considering the right to life of persons with disabilities and the attempts to avoid genetic discrimination (See more on this in our previous post: http://disabilityrightsresearch.com/2012/03/22/european-parliament-hosts-international-seminar-on-genetic-discrimination/ ). On the other hand, some people argue the importance of women’s right to self-determination and they are strongly concerned with any restriction of a woman’s right to make her own decisions. Taking a liberal approach, no one shall regulate on what base a woman may decide to abort her fetus. One can have either economic, personal, or health reasons. It still remains a private issue. Therefore there is a visible clash between the rights of women and persons with disabilities when it comes to protecting the life of a fetus with disability.

There is currently a case in front of the European Court of Human Rights (ECHR) where a Latvian mother gave birth to a baby with Down syndrome in 2002, it is considered a personal injury case since she was not adequately informed of the antenatal screening test, therefore she was not allowed to choose whether to continue the pregnancy or not. Her case is filed under the right to respect for privacy (Article 8 of the European Convention on Human Rights). The decision of the Court will have a great significance as this is going to be the first time when the ECHR has to pronounce the right to abortion with regard to the health of the baby. It may lead to consideration of a fundamental right to abort a fetus having disability.

It is certainly a challenging time to react adequately and effectively in terms of protecting the rights of disabled, but respecting self-determination of women at the same time. In my opinion the key element in the debate is the promotion of abortion which shall be strictly regulated all around the world. Raising awareness among doctors and women on disability should have a positive impact by removing those prejudices which consider persons with disabilities as second-class citizens. I am convinced there is a strong need to change social attitude and prevent decisions automatically in favor of eliminating the life of persons with disabilities. This is crucial to making a step forward to achieving the fulfillment of human rights and a more inclusive society.

“Nothing about us without us!”

""All the Early Stage Researchers have the possibility to spend a six month secondment with one of the associated partners of the DREAM (Disability Rights Expanding Accessible Markets) network.  It is a great opportunity to become familiar with the work of important disability NGOs, enjoying their support and expertise while working on certain parts of our projects. In an ideal case, a secondment should be beneficial for both the researcher and the hosting organization, so we hope to contribute our best to the on-going policy work of most of our partners.

I’m going to spend the next four months in Brussels, working for the European Disability Forum (EDF), which is the representative organization of persons with disabilities in Europe (http://www.edf-feph.org/default.asp). My research is focusing on the National and European monitoring of the UN Convention on the Rights of Persons with Disabilities (UN CRPD), with regard to the involvement of Civil society and especially persons with disabilities. As the European Union is coming up with its proposal relating to the EU level implementation of the CRPD, this seemed to be the perfect time to follow-up the decision by working closely with EDF. It is really important to ensure that the framework designated by the European Union in order to promote, protect and monitor the implementation of the Convention will be compliant with the requirements of the CRPD and will enjoy broad support of Civil society.

The involvement of Civil society and in particular persons with disabilities in all policy and decision-making processes relating to their lives (UN CRPD Article 4.3) is in the heart of the Convention. The most important element of the CRPD is the paradigm shift, which reconceptualised disability as a human rights issue. The slogan “Nothing about us without us!” clearly refers to the importance of ensuring full involvement of persons with disabilities, which is a great challenge considering that the group has been historically marginalized. In the next four months I am planning to do an analysis on the National level involvement of EDF member organizations to see how they find their current participation in policy – and decision-making processes and what are the key elements of effective and active involvement in their view. Last weekend attending the EDF Board meeting in Copenhagen and conducting interviews with important actors of the disability movement made it clear that as a researcher we should follow the principle, that no one, except the disability movement knows how they want to be involved and what is best for them. In my opinion, our research should be as inclusive as possible by involving the voice and opinion of persons with disabilities. This is why I am delighted to do my secondment at the European Disability Forum and listen to the opinion of the disability movement on the implementation of the UN Convention.