Sometimes the most profound social changes are the ones we least notice. Having a child has always been seen as a great gift and almost all of us smile warmly when we see a young baby in the arms of their mother or father. Children reflect our past innocence and nurture further hope that after we are gone our desire to leave the world a better place than we found it will be perpetuated. That is why how we regard and welcome children matters.
Today much information is made available to parents about the health status of their offspring. Increasingly parents pursue more material to help clarify choices around the sort of child they want including their level of intellectual ability, physical aptitude and even their sex.
The new biotechnologies have subtly changed the way we see children. How children can be brought into existence now seems remarkably akin to a manufacturing process embedded with stringent quality control standards and shaped by parental and societal customer service expectations.
We appear to have lost our previous great reverence for each human life as an unrepeatable gift and prefer to ignore the effects of inconvenient realities like missing siblings – brothers and sisters who did not pass the pre-natal testing regime.
It is now obvious to many young adults that their own birth was contingent on their fortunate capacity to satisfy prevailing quality control standards. Even more broadly the very ability of each one of us to be a person who can make choices and initiate action has been undermined. This is because it has now become socially normative for others to decide whether or not each of us should be permitted to be here.
This loss of unconditional love combined with an increasingly pervasive perspective which asserts that only certain sorts of persons should exist has produced effects felt by us all. Last year’s sad saga of Gammy, the baby boy born to a Thai surrogate mother and rejected by his Australian commissioning parents because of his Down syndrome, encapsulated these trends. His story was intuitively deeply troubling to many Australians, even though some may have struggled to articulate why.
The starkest example of this search for reproductive perfection is manifest in the spectacular decrease in the numbers of children in our community with Down syndrome. We might prefer to view this through a therapeutic lens of convenience by suggesting that in reducing the numbers of children who have an extra chromosome 21 we are moving to some sort of social cure. But the reality is that we now choose to eliminate over 90 per cent of such individuals before they are born – often for quite spurious reasons.
Even those that are born may sometimes be denied simple, life-prolonging medical treatments routinely provided to other children with one less chromosome. This is despite the fact that studies in the Journal of Medical Genetics have clearly shown the vast majority of Down syndrome persons are lovingly regarded by both their siblings and parents.
These 2011 studies reveal that siblings of persons with Down syndrome overwhelmingly describe their relationship with them as positive and enhancing while the vast majority of the over 2000 parents surveyed are happy with their decision to have their Down syndrome child and find their sons and daughters sources of great love and pride.
The obtuse reasoning undertaken by some who suggest that certain individuals ‘would be better off not being here’ is also inconsistent with the evidence. Studies in the same journal show that almost all persons with Down syndrome feel that they live happy and fulfilling lives. One wonders whether a study of the broader Australian population would deliver such a clear verdict on the happiness scale.
World Down Syndrome Day is observed by the UN and celebrated each year on 21st March. The theme for 2015 is on the role of families and their contribution to the lives of individuals with Down syndrome. This provides us with an opportunity to reach out to parents and siblings of children with Down syndrome and to thank them for their profound witness to the value of unconditional love and the right of each one of us to be here.
Through such engagement we might just learn a little more about how people with an extra chromosome 21 are able to laugh and play with us, show unbridled affection, form enriching friendships and also pursue their own dreams and aspirations while striving to overcome those difficulties which seem so unfairly placed in their path.
People with Down syndrome are more important to us than we realise. Their very presence gives us a chance to drop our illusory pursuit of perfection and consider how we can be more truly human. Our own gradual movement towards frailty and disability is inherent in our human condition and we need to accept this reality.
This will help us to reject those inclinations within our darker selves which tempt us to strike out at disability by eliminating those who embrace a life we feel would be too difficult to tolerate.
As Morris West wrote of a Down syndrome girl in his book ‘The Clowns of God’, ‘She is necessary to you. She will evoke the kindness that will keep you human. Her infirmity will prompt you to gratitude for your own good fortune...Treasure her!’
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