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The Pressure Of Perfection Shouldn't Apply To Children

Doctors shouldn't talk in worst case scenarios to mothers of children with Down syndrome.

01/12/2016 10:28 AM AEDT | Updated 01/12/2016 10:28 AM AEDT
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"Let's give women the support they need to parent a unique individual and to experience the highs and lows that come from loving another human being who just happens to have Down syndrome."

We are all for diversity these days, are we not? Identity is sacred and inclusiveness is the official word on people with disabilities. So why is every effort being made to eliminate certain people with a difference before they are born?

Last week ABC reported that mothers of children with Down syndrome were repeatedly pressured to abort their children and given only worse case scenarios for their baby's chances of a meaningful life.

Australian families interviewed spoke not only of the negative manner in which a Down syndrome diagnosis was delivered, but about how they were not supported even after deciding to go ahead with the pregnancy.

This is an all too familiar story, supported by research carried out among 1700 mothers in the United States and Spain by Dr Brian Skotko and published in 2005. Even mothers who received a postnatal diagnosis reported that their physicians talked little about the positive aspects of Down syndrome and rarely provided enough up-to-date printed materials or contact details for other parents of children with Downs.

The semi-official nature of the pro-termination attitude is underscored by the shocking decision of the French State Council last month to reject an appeal against its ban on the award winning "Dear Future Mom" video from French television.

The warm and charming video was produced for World Down Syndrome Day in 2014 and features young people with Down syndrome from around the world talking about their lives. It aims to reassure women who have received a prenatal diagnosis that their child can be happy and live a fulfilling life.

The Council deemed the video "inappropriate" because the young people's expression of happiness in the video was "likely to disturb the conscience of women who had lawfully made different personal life choices." Presumably in years to come, all happy children and families will be banned from French television so that those women (and men) who have made lawful choices to pursue a career and not raise a family will not have their consciences 'disturbed'.

Women in our society are subject to constant pressure to be perfect: to have perfect bodies, perfect careers, and now to have perfect children. Thus increasingly, women faced with a Downs diagnosis are being presented with abortion as the only 'choice' by medical practitioners, family members, colleagues and even complete strangers.

Recently, a good friend of mine whose brother has Down syndrome told me that not long after her baby brother was born, a woman approached her mother while she held him in her arms and said: "you know, they have screening for that." What began as a women's choice has now become a societal expectation, almost an obligation.

With this societal expectation has also come a reluctance by medical professionals to provide women with full information about the diagnosis and all the options and support available. The decision to ban the "Dear Future Mom" video is just one more example of the important information being kept from women who receive a positive diagnosis.

The pressure to abort children with Down syndrome will no doubt increase if the Australian government goes ahead with funding a new non-invasive prenatal test (NIPT), which recently received governmental funding in the UK.

The United Nations Educational, Scientific, and Cultural Organisation (UNESCO) has warned states against adopting the test into their national screening programs due to ethical concerns that it would result in the "routinization and institutionalization of the choice of not giving birth to an ill or disabled child" and that women "might be stigmatized if they refuse to take the test." It has further cautioned:

The widespread use of genetic screening and in particular of NIPT may foster a culture of 'perfectionism' or 'zero defect' and even renew some 'eugenic trends', with the consequence that it could become more and more difficult to accept imperfection and disability as a part of normal human life and a component of the diversity we are all called on to acknowledge and respect.

Our hearts go out to women and families who are frightened by a Down syndrome diagnosis, but let us pause for a moment and consider why they are so scared. Are they worried that their child will have a life of suffering? That they will be a burden to their family and society? That's what is being communicated to them by health professionals and authorities.

Women in this situation need to be given proper information and support not scare campaigns, misinformation or no information. They need to have the opportunity to listen to the voices of women who are raising children with Down syndrome and to see what a very different picture emerges. These mothers not only love their special children dearly, they are proud of them and ambitious for them.

They include UK actress Sally Phillips, whose recent BBC documentary "A World Without Down syndrome" was a wake-up call to Britons, and mothers behind "Changing the Face of Beauty", a US organisation that encourages the inclusion of individuals with disabilities in advertising and the media.

There's also Tasmanian mother, Rebecca Kelly, who recently prompted a change in the national Australian guidelines for prenatal testing so that Down syndrome testing results are not delivered in negative terms. She has also called for an independent study in Australia of the prenatal care given to women who receive a Down syndrome diagnosis.

These personal experiences are underpinned by recent research led by Dr Brian Skotko, co-director of the Down Syndrome Programme at Massachusetts General Hospital, who found that positive attitudes dominated in a large group of families (around 2000) that had a family member with Downs.

Our society somewhat paradoxically celebrates diversity while insisting on enforcing stereotypes of perfection. However, as these mothers of Downs children will tell us, their children are perfect in their diversity and can bring out the very best in families and society.

Instead of extinguishing this unique opportunity to really embrace diversity, let's give women the support they need to parent a unique individual and to experience the highs and lows that come from loving another human being who just happens to have Down syndrome.

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A petition asking France to lift the discriminatory ban on the "Dear Future Mom" video can be signed here.

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