On 'Prinsjesdag' (day of Princes) in the Netherlands (September 19th.), the Dutch government officially promised stillborn children can be registered as 'persons' in the BRP (Bureau Registration Persons). The new policy includes children who are stillborn before a 24-week gestation: the moment when unborn children are deemed viable according Dutch law and from when abortion is prohibited. The decision followed the campaign by a group calling for the acknowledgement of their beloved children “who have lived their life in the belly of their mothers”. Their press-release stated: “BRP-registration is not only a recognition of their existence, but a right they deserve.”
The State decides what the woman chooses
One day later the Dutch Minister of Health announced that the Netherlands will become the first country in the world to offer NIPT to all pregnant women. With her decision the Minister gets ahead of the ethical debate that is planned in December 2016 as well as the Health council's advice whether or not NIPT should be offered in basic public healthcare. The NIPT (Non Invasive Prenatal Test) is a new type of genetic test that can potentially detect a range of genetic conditions in an unborn child by analyzing the blood of the mother. The formal purpose of prenatal genetic testing is not health gain but to 'facilitate reproductive choice'. The irony is that not the woman decides for which conditions she wants to screen her pregnancy, but a small group of 'experts' who have singled out Down syndrome as the primary objective of the NIPT.
During the past 23 years between 74% and 94% of unborn children who were diagnosed with Down syndrome were aborted. The Health council expects that by introducing NIPT more women will choose to undergo screening. Last year a group called Downpride campaigned and petitioned for the equal recognition of their children. Parents and self-advocates worry that government promoted selection negatively affects acceptance and support in society. They have good reason to be worried: in their blackbook Downsyndrome family members and self-advocates report feeling pressured and discriminated. Furthermore, statistics show that research into life with Down syndrome is consistently underfunded, while governments and industry are pouring billions into the development and implementation of screening programs focused at the selection Down syndrome. A clear signal that society found the 'solution' in prenatal exclusion.
The crime is wanting to make a group extinct
The Copenhagen Post reported in October 2015 that Down syndrome is “heading for extinction”. This wording does not adequately describe the systematic measures taken to impede the birth of a targeted group of persons with similar genetic features, leading to the systematic and deliberate destruction of the group itself. The act of 'imposing measures intended to prevent births within the group' with intent to destroy, in whole or in part, a national, ethnic, racial or religious group, is described as 'Genocide' in the Rome statute. Race is defined as 'a group of people identified as distinct from other groups because of supposed physical or genetic traits shared by the group. While people with Down syndrome likely cannot be described in the traditional sense of 'different race', it is indisputable they are identified as a group based on distinct shared physical and genetic traits. People with Down syndrome are part of a larger group, disabled, that was targeted for extermination during World War II by the Nazi's.
History taught us that genocide does not discriminate: the number of casualties can be large or small, machetes can be used or technologically advanced tools, it can happen anytime and anyplace, even in the most industrialized countries in the world. Because of this ambiguity it isn't always easy to recognize genocide. What distinguishes genocide from other acts of violence is the motivation: “The crime is wanting to make a people extinct. The idea is the crime.” (Gourevitch, 1998)
When former member of the Unesco Bioethics Committee and professor human genetics, Hans Galjaard was asked in an interview regarding NIPT if he thought that Down syndrome had to disappear from society, he answered: “Yes, that was one of my motivations.” Called the ‘Dutch father of prenatal diagnostics’ he was, as an advisor to both State as National health-insurers, at the cradle of developing and implementing prenatal screening technology in the Netherlands.
Are some people more human than others?
I am the spokesperson of Downpride. Our campaign did not lead to policy reforms, on the contrary: the negative effects of government policy on the lives of people with Down syndrome are minimized and denied. In the UK the debate surrounding genetic screening has intensified recently and actress Sally Philips, who has a twelve year old son with Down syndrome, has emerged as an outspoken advocate on behalf of her son and others with Down syndrome. In her latest interview she said: “If we deny someone the chance to be born because we've decided they won't meet some predetermined measure of status or achievement, then we've failed to grasp what it means to be human.”
I am not pointing a finger at parents who abort their pregnancy; they must be under a lot of pressure. I am blaming governments who mis-use health-care to prenatally distinguish between babies and hide their discriminatory policy behind 'individual choice'. Offering 'choice' promotes the idea that not all lives are worth living and, as we see in Denmark, many individual choices add up to the organized destruction of a group.
How can a State recognize and honor the humanity of stillborn life yet encourage the ending of unborn life based on WHO they are? Since John Langdon Down first described the tell-tale signs of Down, these trustful and joyful souls, with their beautiful almond shaped eyes, have been distinguished and dehumanized. Now, advanced technology is used for their mass-extermination.
When I kiss my two daughters who were born with Down syndrome, on their foreheads at night I quietly apologize for the people who believe they shouldn't be alive. Like in other genocides, dehumanization and destruction do not just happen to the victims; it happens to humanity. Recognition is the first step to healing and equality.
Downpride and Lejeune Foundation have jointly submitted a statement to the UN to ask member states to respect the equal human rights of people with disabilities and to abandon the use of prenatal genetic screening for the purpose of prenatal exclusion and selection.
Please support equality of people with disabilities by signing our petition: http://stopdiscriminatingdown.com/sign-the-petition/
