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.

Call for Abstracts ‘Empowerment through Human Rights’

""Conference of the Doctoral College ‘Empowerment through Human Rights’ of the University of Vienna within the framework of the AHRI-COST Annual Conference 2012

""We invite abstract submissions of PhD students for all the themes below for a conference on ‘Empowerment through Human Rights’ to be held in Vienna, Austria, on 10-12 September 2012. The Doctoral College (Initiativkolleg) ‘“Empowerment through Human Rights’” is an inter-disciplinary group of 13 doctoral students, coordinated by the research platform ‘“Human Rights in the European Context’ of the University of Vienna and the Ludwig Boltzmann Institute of Human Rights”. All of the students write their theses on topics related to human rights in a wider sense and have their background in the disciplines of Law, Sociology, Psychology, Development Studies and African Studies.

""At the PhD school of the AHRI/COST conference, we would like to present our individual work and discuss it together with other PhD students writing their theses on related topics. The program will consist of six panels, taking place on two half-days, with three subsequent panels in each session.

""

Submission of abstracts must be made by Word document using the “Abstract Submission form” and sent to: COST.IK2012@univie.ac.at by 30th April 2012.

Abstracts must be no longer than 300 words and must include your title, name and institutional affiliation and your email address for correspondence. Indicate clearly for which indicated themes below you apply. Please state clearly in the subject section of your e-mail that you are submitting an abstract for the COST postgraduate conference.

The themes for the conference:

  1. Poverty and Territory
  2. Asylum and Migration
  3. Mental Health and Human Rights
  4. Human Rights in Development
  5. Trafficking in Human Beings
  6. Criminal and Social Justice

Other topics related to the issues of Human Rights are also encouraged. Submissions with an interdisciplinary perspective are particularly welcomed. Travel expenses up to €300 and daily subsistence allowance for the duration of the conference will be covered for selected presenters. There is no registration fee. We look forward to reading your abstracts!

The fellows of the Doctoral College ‘Empowerment through Human Rights

Here is the link for the full announcement including application form.

Zero Project

""In January I had the privilege of attending the Zero Project’s International Conference on Good Policies for Persons with Disabilities in Vienna, Austria. The conference was an amazing success. Not only were the discussions and presentations inspirational, the facilities and amenities were outstanding. I personally got the fantastic opportunity to connect with people doing some excellent research, Anna Lawson, and advocacy work, Colin Low.

The Zero Project has recently put forward nominations for outstanding policies and examples of good practices under the principles of the UN CRPD right of persons with disabilities to work. I encourage everyone to please make their contribution to this effort.

Thanks to the Essl Foundation and the World Future Council for facilitating such a phenomenal initiative!

Presentation at the ECPR Sixth Pan-European Conference on EU Politics

""I will be presenting a paper titled “How Social Institutions Impact E-Accessibility Policy” at the ECPR Standing Group on the European Union’s Sixth Pan-European Conference. It will be hosted by the University of Tampere, Finland from 13 to 15 September 2012. The Standing Group’s Pan-European Conference is the largest academic conference on the European Union in Europe and brings together scholars working on the European Union from all over the world.

""

The paper examines how social institutions (i.e. the differences in norms, values and procedures) impact the design and implementation of national and supranational policies to promote accessibility of information and communication technology (E-Accessibility). Based on original research currently in progress the paper presents preliminary findings based on a content analysis of policy documents from the UN and EU, and the US, UK and Norway.

The conference will feature Eleven sections

  • Theories of European Integration
  • EU Institutions and EU Politics
  • EU and Domestic Politics
  • Public Opinion, Party Politics and Interest Groups
  • Political Economy of the EU
  • EU Foreign Policy and External Relations
  • The EU and Conflict Resolution
  • The EU: Challenges and Reforms
  • Gender and Diversity
  • Immigration, Migration and Asylum
  • New Developments in Research on the EU

Disability Researching

We are delighted to welcome this guest post from Theo Blackmore, who works as the Strategic Liaison Manager for Disability Cornwall. Blackmore did his PhD with Exeter University, entitled “Half my friends don’t even see me as disabled: What can field, capital and habitus reveal about disability, inclusion and exclusion?” He is interested in the changing nature of feelings of inclusion, exclusion and disability for people with impairments.

""Disability Cornwall is user-led, disabled people’s organisation based in the UK. We’ve been working for 17 years providing information and advice, a magazine, peer support, and other services.

As part of my work I helped create the Cornwall Disability Research Network (CDRN). This network brings together grass roots disability organisations to understand, engage with, and design/conduct, disability research activity.

Through the CDRN conferences, we have heard the experiences of disabled people from other countries (e.g. Nigeria, Russia), and from other regions of the UK. We have also heard from local, regional and national disabled people’s organisations about their experiences.

The activities of CDRN involve finding disabled people with innovative research ideas, andworking with them to design a research question, an appropriate methodology, and then conduct and report the results.

Not being a university or research institute – we are a small disability organization – it is very difficult to attract funding .

Locating this research in our organisation, rather than in a university/academia, was a choice because we wanted our research NOT to only contribute to an academic discourse. Our aim is to produce research that can help with the day-to-day needs of disabled people, and of the organisations working with and for them. It’d be great if it could serve an academic purpose as well, but this is not the primary driver.

We are locating our research at the individual level, with the disabled person designing and conducting the research, rather than an academic institution. This highlights a friction inherent in funding bodies looking to create “impact” through strategies such as participatory research but adhering to a more conventional academically minded funding mechanism. We want to design and deliver research that is primarily useful to disabled people and the organisations working with them.

Our ultimate aim is to roll out a national research programme, located outside academia, drawing together local, regional or national user led disabled people’s organisations across the UK interested in collaboration.

For further information, please contact Theo Blackmore at theo@disabilitycornwall.org.uk