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.

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21st March – World Down Syndrome Day

21 March 2012 marks the 7th anniversary of World Down Syndrome Day and for the first time in 2012 this day will be officially observed by the United Nations. Please find below the message of the UN Secretary-General:

THE SECRETARY-GENERAL

MESSAGE ON World Down Syndrome Day

21 March 2012

“Today marks the first commemoration of World Down Syndrome Day.  I congratulate the global partnership of governments, activists, families, professionals and others that worked so tirelessly and passionately to bring this Day into existence.

For too long, persons with Down syndrome, including children, have been left on the margins of society. In many countries, they continue to face stigma and discrimination as well as legal, attitudinal and environmental barriers that hinder their participation in their communities.

Discrimination can be as invidious as forced sterilization or as subtle as segregation and isolation through both physical and social barriers.  Persons with Down syndrome are often denied the right to equal recognition before the law, as well as the right to vote or be elected. Intellectual impairments have also been seen as legitimate grounds for depriving persons with Down syndrome of their liberty, and for holding them in specialized institutions, sometimes for their entire lives.

In many countries, girls and boys with intellectual disabilities lack sufficient access to mainstream education. The prejudice that children with Down syndrome obstruct the education of others has led some parents of children with intellectual disabilities to put their children in special schools or keep them at home.  Yet research shows – and more people are coming to understand – that diversity in the classroom leads to learning and understanding that benefit all children.

The United Nations has worked for decades to ensure the well-being and human rights of all people. These efforts were strengthened by the adoption of the Convention on the Rights of Persons with Disabilities in 2006. The Convention embodies a paradigm shift in which persons with disabilities are no longer regarded as objects of charity and welfare, but as persons with equal rights and dignity who can make an enormous contribution to society in their own right.

On this day, let us reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms.  Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all.”

For more info: http://www.worlddownsyndromeday.org/