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The Forum > Article Comments > German doctors apologise > Comments

German doctors apologise : Comments

By Lachlan Dunjey, published 4/3/2013

One can almost read the headline 'medical advance enables Down syndrome prevention'.

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David, the only way to “rid the world of genetic defects” such as Down’s syndrome is to kill every person detected to have it, either before birth or after birth. And this killing programme has to be repeated with every generation.
Many conditions such as Down’s syndrome are not a disease—they cannot be eradicated “ in a couple of generations”. Naturally occurring genetic variations are present at the very beginning of life in every cell of the fertilized ovum, and remain present at every stage of life, from the embryonic and foetal stages to the new born babe, infancy, childhood, adolescence and adulthood.
Every unborn child has a right to exist, a right to be born. Every child has the inherent and inalienable right to membership of the human family. That membership is inclusive of all the billions of natural variations of abilities and appearances and personalities and problems. Though we are not endowed with equal abilities, we each have an equal right to be born, a right to be given before as well as after birth equal protection of the law against lethal medical interventions.
Leaving human rights and any form of religious faith aside, I believe deeply that every human life is good, worth having a go at no matter what the calculus of happiness to suffering.
Your son , David, is uniquely who he is. He’s defied immense odds just to be alive and to stay alive.
He is a hero.
Not a trophy.
As you yourself are a hero—you have loved him and suffered for him and with him and day after day have acknowledged and affirmed his life as your son.
All these years, you and others who also have loved him, have affirmed his fragile presence here. His triumph is just to stay alive in an imperfect world set in an immense hostile universe. You have supported his will to live and have kept him from oblivion.
This is heroism in the true sense of the word. Our world would be poorer without him.
Posted by RitaJ, Saturday, 9 March 2013 7:45:24 AM
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To David G and Suseonline: Perhaps read this post on the ABC site that is also discussing this issue, and then question some of your most basic assumptions about disability:
"Our first son has a rare genetic condition. We found out shortly after he was born. The doctors told us all the characteristics of his syndrome and what he would be like (and scared me out of my wits). Severe intellectual impairment, physical impairment, non-verbal, uncontrollable seizures etc. We were devastated.
Prior to our son's birth, I had no experience with disability. I thought in the case of finding out about disability it was doing them a 'kindness' because they were clearly 'suffering' and not 'living a full life.' All I can say now is doctors do their best but are led by text books and on the whole, the general public (my old self included) are selfish, ignorant, scared of people with disability and don't understand about disability.
The doctors don't know my son. They don't know that he doesn't exhibit half of the things they told me he would. What they really have no idea about is his personality. If they had of got to me prior to his birth, he may never have existed. That would have been a tragedy. Why would I terminate someone who has a great little boys life? It may be different to a boy who is running around but he still plays with his toys, tells me about his day (he just uses AAC to do it) and has friends. He still goes to school and learns. Just because it is different to what most people are doing, why would I kill him off? He is so funny, super cheeky...He definately looks different and acts differently but that doesn't mean his life is any less worthwhile.
I am ashamed of my old opinions. My well intentioned ideas were idiotic and ill informed. Why is my world and life considered better just because I can walk or speak or process information a bit quicker than my fellow human beings?"
Posted by lacey, Sunday, 10 March 2013 1:30:49 PM
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Thanks to Suseonline for the most reasonable TRUTHFUL remarks in this debate. I'm wondering how many of the "do-gooders" advocating giving birth knowingly to a child with profound abnormalities have such a person in their care or devote considerable time to assisting a primary caregiver in that role? UNPAID of course.

It is the role of Healthcare Professionals to provide, to the best of ability with the tools available to them, information that will allow women, foremost, and partners to make the correct decision for them. While quite sure there are occasional errors in test results, on the whole most are accurate. Personally I've never even heard of, let alone encountered a Doctor or Nurse pressuring a pregnant patient (and/or partner) to terminate an 'imperfect' fetus. They may present distressing facts but that's the job. If pressure is brought to bear - one way or the other, it's usually from family or friends.

Like Suseonline, I'm familiar with aged parents struggling to care for 'children' with profound disabilities. Many of these 'children' tend to develop age related problems early in life making matters even more difficult. As for the disabled client, while some are happy carefree likeable individuals, particularly as children, the majority don't have a good quality of life despite the care and resources spent on them. Puberty brings a whole set of new challenges - made even worse for Carers, since 'do-gooders' have decreed that even the most profoundly incapable disabled person has 'reproductive rights'. I could write a book ...

Yes I would prefer to see termination. It's hard enough to rear a genetically normal child. However that decision belongs solely with the parent/s and everyone else with an opinion should apply it to themselves only.
Posted by divine_msn, Monday, 11 March 2013 12:48:21 PM
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