The African Disability Rights Yearbook has been published!

The first volume of the African Disability Rights Yearbook has been launched on 5 November 2013 by the Centre for Human Rights at the Faculty of Law, University of Pretoria. The Yearbook is the first peer-reviewed journal in the African region to focus on issues at the intersection between disability and human rights against the backdrop of the Convention on the Rights of Persons with Disabilities. The African Disability Rights Yearbook will be published annually. The Yearbook is available online free of charge at: http://www.pulp.up.ac.za/pdf/2013_07/2013_07.pdf 

One of the DREAM ESRs, Magdi Birtha (CDLP, NUIG) has a chapter published in this very important publication:

‘Nothing about CRPD monitoring without us’: A case study on the involvement of the disability movement in policy-making in Zambia. 

 

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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9 April 2013 – Launch of Volume 3 of the European Yearbook of Disability Law in the EP

Aside

Launch of Volume 3 of the

European Yearbook of Disability Law

&

 Research Colloquium:

“The Future of European Disability Scholarship as a Tool for European Policy Makers.”

Keynote: Anna Lawson, Senior Lecturer in Law, University of Leeds

 

Co-Organized by the Centre for Disability Law and Policy, based at the National University of Ireland (Galway), and the Maastricht Centre for Human Rights of Maastricht University.

 

Hosted by: Mairead McGuinness (MEP) and Marian Harkin (MEP).

Date/Time: Tuesday, 9th April 2013, 12pm-3pm

Venue: European Parliament, Room P5B001, PHS Building, Brussels.

 

Languages: English and International Sign

The event will be preceded by a light lunch to which participants are invited.

 

To Register:

(This event requires pre-registration)

Please fill out the registration form and return to:

charlotte.may-simera@nuigalway.ie or

Charlotte May-Simera

Centre for Disability Law and Policy, National University of Ireland, Galway

For more information please visit the CDLP website: http://www.nuigalway.ie/cdlp/events/yearbook_launch.html 

THE EVENT:

The launch of the book is an opportunity to bring together a range of stakeholders in the disability field, such as civil society and industry representatives, academics, human rights activists, policy-makers from European and national institutions and politicians, including Members of the European Parliament, to discuss and map out the future of European legal research and scholarship on disability.

The research colloquium, held in conjunction with the book launch, will provide a unique opportunity to increase the efforts and possibility to network and forge links between disability stakeholders from across the EU. Additionally, the occasion of the book launch is an opportunity to bring together and encourage the exchange of ideas and expertise amongst many disability stakeholders. This event will gather a wide audience from a variety of backgrounds and mandates to establish cross-sectoral links between numerous areas, most notably between, civil society, academia and EU and national institutions.

This research colloquium and the ensuing discussions are a key opportunity to frame disability policies and reform discussion as they continue to emerge. There are a number of key challenges and debates facing Europe in the coming decade, and disability scholarship can play a crucial role in providing accurate information to decision-makers, framing debates, and forming solutions to potential challenges. One example of an area where academic research can contribute to the debate is in the implementation and monitoring of the UN Convention on the Rights of Persons with Disabilities. The EU concluded the Convention in 2010, and most Member States have now ratified, or are close to ratification. Current debates in this area have focused on how a division of responsibilities and competencies can be agreed between the EU and its Member States, and this is another area in which disability scholarship can provide clarity and elucidation.

 

Editors: 

Prof. Lisa Waddington (European Disability Forum Chair in European Disability Law, Maastricht University)

Prof. Gerard Quinn (Director, Centre for Disability Law and Policy, National University of Ireland, Galway)

Dr. Eilionóir Flynn (Senior Lecturer, Centre for Disability Law and Policy, National University of Ireland, Galway)

The Yearbook can be ordered here.

Reminder: Invitation to submit articles to the European Yearbook of Disability Law

The editors of the European Yearbook of Disability Law welcome submissions of articles for inclusion in volume 5 of the series. The Yearbook contains a series of articles on current challenges and developments from analysts and academics working in the field of disability law, and is a highly-regarded, peer-reviewed journal in this field.

The Yearbook aims to provide critical insight into the evolution of European disability law and policy and offers analysis of pressing challenges in a broad range of fields. DREAM ESRs are ideally placed to submit articles to the Yearbook, given the Network’s work in the area of European disability law and policy reform in light of the UN CRPD. Previous articles included in the Yearbook have addressed topics such as: reasonable accommodation, inclusive education, digital and telecommunication accessibility, multiple discrimination, the implementation and monitoring of the UN CRPD, and the intersectionality of the UN CRPD, to name but a few areas discussed.

Articles may address for example, aspects of European Union or Council of Europe law, or undertake an analysis of disability law across European countries.

The next deadline for submission of articles is 28 February 2013, with a view to publication at the end of 2013. Authors are encouraged to contact a member of the editorial board to ensure their article falls within the scope of the Yearbook. All suitable articles are subject to peer review. Articles should be between 10 000 to 12 000 words in length, and authors are asked to provide an abstract of 150-200 words. Submission of an article will be taken to mean that the manuscript has not been published, accepted or submitted elsewhere.

If you are interested in submitting an article to Volume 5 of the Yearbook, please contact one of the editors:

Professor Lisa Waddington

Email: lisa.waddington[at]maastrichtuniversity.nl


 

Dr. Eilionóir Flynn

Email: eilionoir.flynn[at]nuigalway.ie

Or

Charlotte May-Simera (research assistant)

Email: charlotte.may-simera[at]nuigalway.ie

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.

Despite legislation, disability rights not realised in practice

FRA Press Release Vienna, 7 June 2012

Discrimination against people with intellectual disabilities and people with mental health problems persists despite the ratification of the UN Convention on the Rights of Persons with Disabilities (CRPD) by the EU and 21 Member States. Two new FRA reports capture the experiences of exclusion and discrimination of people with intellectual disabilities or mental health problems. The reports highlight the need to move from institutional to community-based living arrangements and to reformulate laws and policies to make them more inclusive. Both reports are presented at an international conference on “Autonomy and inclusion” in Copenhagen on 7-8 June 2012.

Much still remains to be done to realise the rights of Europe’s 80 million people with disabilities. The CRPD sets out an ambitious path to improve the situation of people with disabilities. The challenge now is to implement it,” said FRA Director, Morten Kjaerum. “FRA’s research illustrates that the fundamental rights of people with disabilities are lagging behind legal guarantees, particularly as austerity measures begin to bite. This work provides the basis for discussions of practical measures that will make a difference to their daily lives.

1) Report: “Choice and control: the right to independent living” The research looked into the experiences of independent living of people with intellectual disabilities and people with mental health problems in nine EU Member States, and found that they often face difficulties in their daily lives. The main problems include:

Laws and policies that do not enable people with disabilities to live independently;

Negative attitudes and prejudice that do not recognise the contribution people with disabilities make to society;

Lack of employment opportunities resulting in reliance on state support and benefits.

The report shows that for independent living to be successful, deinstitutionalisation needs to be coupled with social policy reform in education, healthcare, employment and personal support options. People with disabilities have to be involved in the development of these policies. 

“People at the ministries and authorities should talk to people like me when they develop legislation and policy. They should ask us what we want and need, and not make our lives more difficult.” (Man, 32, Bulgaria, interviewed during the research)

2) Report: Involuntary placement and involuntary treatment of persons with mental health problems The second FRA report underlines that the laws regulating involuntary placement or treatment must consider fundamental rights in accordance with the CRPD. Although all EU Member States have minimum safeguards in place, FRA fieldwork points to overwhelmingly negative experiences of involuntary placement or treatment due to a:

Lack of information and discussion about the process and their situation when they could have been consulted leading to a lack of control over what was happening to them;

Feeling of fear and humiliation during treatment. Voluntary placement and treatments were viewed more positively.

Both FRA reports provide a basis for EU and Member States’ discussions on how to protect and fulfil the rights of people with disabilities, and can be used to support them in fulfilling their obligations under the CRPD. For the full reports see:

Involuntary placement and involuntary treatment of persons with mental health problems (http://fra.europa.eu/fraWebsite/attachments/FRA-2012-involuntary-placement-treatment_EN.pdf )

 Choice and control: the right to independent living – Experiences of persons with intellectual disabilities and persons with mental health problems in nine EU Member States (http://fra.europa.eu/fraWebsite/attachments/FRA-2012-choice-and-control_EN.pdf )

Notes to the editors:

The UN Convention on the Rights of Persons with Disabilities (CRPD), which entered into force in May 2008 has since been ratified by 21 EU Member States and the EU itself. This is the first legally binding international human rights instrument to which the EU is party. The CRPD requires signatories, among other responsibilities, to make independent living a reality for all people with disabilities, and to support them participating in the community on an equal basis with everyone else.

Mental health problems can affect a person’s thoughts, body, feelings, and behaviour. They include depression, bipolar disorder (manic-depressive illness), attention-deficit/ hyperactivity disorder, anxiety disorders, eating disorders, schizophrenia, and conduct disorder.

Intellectual disability is a permanent condition characterised by significantly lower than average intellectual ability, resulting in limitations in intellectual functioning and adaptive behaviour. It is usually present from birth or develops before the age of 18. Examples include: Asperger Syndrome, autism and Down Syndrome.

The nine countries covered in the Choice and control report are: Bulgaria, France, Germany, Greece, Hungary, Latvia, Romania, Sweden and the UK.

The Involuntary placement and treatment report provides a comparative law analysis of 27 EU Member States along with personal experiences from the nine countries covered in the Choice and Control report.

The European Union Agency for Fundamental Rights (FRA) is mandated to provide evidence-based advice to EU and national decision makers, thereby contributing to more informed, solidly framed and contextualised debates and policies on fundamental rights.

For further information please contact the FRA Media Team E-mail: media@fra.europa.eu Tel.: +43 1 580 30 642

“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.