"What do we need to do? We need to talk. We need to teach. And we need to remember." Dear Doctor what about learn?

This debate does not belong in a country that gives the families of people with a disability minimum support. We have all seen the octogenarian parent holding the hand of his or her middle aged Down Syndrome child as they cross the road or do the grocery shopping. Parents must always have the right to choose and while the choice to have a disabled child means to care full time until you die, ragged with worry over what is going to happen to the person you have left behind, it is quite reasonable that parents choose not to go down that path. If it takes a village to raise a child, it takes a whole country to raise a disabled one. Until this country steps up to do so, the good doctor should stop telling people how to live their lives.

Estelles is right.
It's all very well for the author to say how 'educable' , loveable and personable people with Down's Syndrome can be, the fact remains that they can almost never live an independent life.

Thus, their parents/siblings are also never going to be able to stop being a resident carer for their family member for a lifetime of this person, because they can now live a long life.

People with Downs Syndrome almost always suffer from other physical disabilities, such as heart or bladder problems, as well as often severe intellectual problems.

Not all parents want to bring a child into the world that will definitely have some or all of these problems, no matter how 'educable' they may be.

I would never say how some parents should react after being told they have a Downs Syndrome pregnancy.
As I say with all decisions about abortion, it is up to the parents, and is no one else's business.

Both Estelles and Suseonline are wrong. There is never a right to choose to exercise lethal prejudice against a defenceless unborn child because that child has a disability.

Children at risk of abortion because of a disability have human rights.

Nazi abortion and euthanasia programmes were condemned at Nuremberg as crimes against humanity— "...unborn children were denied legal protection".

Responding to Nazi atrocities, modern international human right law prohibited removal of human rights protection from any group of human beings.

Both abortion and euthanasia are human rights violations involving arbitrary deprivation of life. The right to be protected by law from arbitrary deprivation of one’s life is guaranteed in the International Covenant on Civil and Political Rights (ICCPR).

The drafting history of the ICCPR makes it clear that medicalized killing, even in response to distress, is always a violation of the fundamental human rights principle of inalienability. Human beings cannot be deprived of the substance of their rights, not in any circumstances, not even at their own request, not even at the request of their mothers, in the case of children at risk of abortion because of Down syndrome.

The biological and legal truth about each child at risk of abortion because of a disability is that he or she is a human being entitled under the rule of law to human rights protection "before as well as after birth", as recognized by the Universal Declaration of Human Rights.

Under the UN Convention on the Rights of Persons with Disabilities, Australia and other members of the international community solemnly agreed:

•to protect children at risk of arbitrary deprivation of life because of their disabilities;

•to provide them with prenatal as well as post-natal care;

•to institute community education programmes that foster respect for them as part of human diversity and humanity; and

•to combat stereotypes, prejudices and harmful practices perpetrated against them.

It is hard to find a more harmful practice than the promotion of Down syndrome testing which leads currently to the selective abortion of more than nine out of every ten children detected prenatally to have this disability.

Personally, I would like to commend and thank the author for his thoughtful contribution to the ongoing debate about pre-natal screening, which is obviously, indisputably designed to "weed out" any foetus suspected of being in any way disabled. The fact that this sort of screening not only occurs, but is being and will indisputably continue to be further developed, refined, expanded and encouraged, demonstrates very starkly how deeply mainstream society still rejects people with disability, despite all the syrupy lip service paid over recent decades as to how much people with disabilities are "valued" and their fundamental human rights respected and acknowledged blah blah blah blah. And as long as any society continues to reject - and indeed,fear - people with disabilities at this primitive, visceral level (not all that far from the practise in less medically advanced societies of automatically suffocating any obviously disabled child at birth), then why would that society be keen and willing to provide the sorts of costly, ongoing supports and services which Estelles bemoans the absence of? If you support and defend pre-natal screening to "weed out" foetuses suspected of disability, then don't expect society to help anyone who slips through the net as it were, and manages against the odds to live.

The Nazi atrocities were atrocious because the fascist state forced women to have abortions whether they wanted one or not. A woman in our society making an informed medical decision without pressure from the state is a very different thing.

Cheers,

Tony

Tony, it is very important to understand that under the Nazis abortion of the proscribed groups required by law the consent of the pregnant woman.
In general also the doctors, implementing Nazi eugenics policy, were not coerced. Historians, Henry Friedlander, Robert Proctor and Robert Jay Lifton confirm this.
As Lifton concludes from his study of the psychology of “The Killing Professionals”: “Genocidal projects require the active participation of educated professionals — physicians, scientists…lawyers, clergy, university professors and other teachers — who combine to create not only the technology of genocide but much of its ideological rationale, moral climate, and organizational process….”
“The individuals involved in the "euthanasia" …of ‘lives not worth living’ were never ordered to kill their patients. They were simply empowered to do so”. “ It was a 'can' and not a 'must order'.” "The killing system depended on the cooperation of bureaucrats, physicians, and parents"

The truth is that the Nuremberg condemnation of abortion as "a crime against humanity" was not simply limited to the practice of coerced abortions but extended to voluntary abortions as well. It is the abortion itself that is judged an atrocity against human life, against the lives of unborn children, not “racially perfect”, who should have been given “protection of the law”. Coercion was treated as an additional factor of rights violation but it is clear from the Nuremberg records that it does not constitute the whole violation.

The most precious gift we can ever receive is that of life and it is given to us by GOD, by what right does anybody have to destroy this gift? Instead of campaigning to end the life of the unborn child because of a possible disability how about you folk who are all for this, start practising some tolerance for the less fortunate, some understaning and some love and patience, it helps see things differently.

RitaJ, I am not wrong merely because I have a different opinion to you.
Obviously, if 9 out of 10 known Down's Syndrome pregnancies are aborted, then I am not alone in my thoughts.

No one can force you to have an abortion, just as you can't force any woman to go through with a pregnancy if she really doesn't want it...

Australiancrawl states we can't abort his God's creations.
Well, this same God seems ok with aborting his/her/it's own 'creations' by miscarriages or stillbirths.
Leave women and their pregnancies alone.

Tony, the differences between practices in today’s Genetic Counselling Clinics and the coercive practices in the Third Reich may not be as clear-cut as you imagine. Australian governments have expended millions of dollars establishing Clinics containing highly-trained staff and expensive gene analysis apparatus in today’s maternity hospitals. Do you naively believe there is no pressure on these facilities to “achieve outcomes” in terms of the number of “defective” babies identified for elimination? During an encounter between a single-minded, highly trained Genetic Counselor seeking to score another “hit” for the monthly statistical report to the Health Department, do you think an expectant mother with limited English skills or little scientific training is truly on an equal footing? Also, given that modern day gene analysis methods can detect millions of mutations in the genome of every one of us, who precisely gets to say whether an individual mutation should earmark anyone for elimination? Can you see no legitimacy whatsoever in these concerns?

First they came for the kids with Down syndrome, and I said nothing because my kid didn't have Down syndrome. Then they came for the kids with haemophilia, and I said nothing because my kid didn't have haemophilia. Then they came for the kids with osteogenesis imperfecta ... Philip Burcham. See http://www.abc.net.au/religion/articles/2013/03/04/3703049.htm#comments

Tony Lavis's naive and trusting belief that women who undergo pre-natal genetic testing get to make an "informed medical decision without pressure from the state" if their foetus is thought to have some defect or other makes me laugh out loud - in a bitter sort of way. Sorry Tony but you have no idea what you are talking about. Scores of women who have contributed to this debate (mainly in the UK and US), along with several women I have talked to personally, have testified as to the intense pressure they were placed under to terminate more or less immediately, accompanied by all the sorts of dire warnings and gloomy, negative predictions reflected in Suseonline's contribution. Many women have testified that when they pointblank refused to accede to a termination, their child was later born perfectly healthy and without any disability. Doctors and their tests are very far from perfect, believe it or not. And Suseonline - you are entirely wrong to conflate this discussion with the question of a woman's right to have a termination in general. Are you aware that if a scan or test reveals an unborn child has a disability, then doctors legally can and do terminate up to 38 weeks' gestation, killing the foetus with a saline injection into the heart, which then requires the woman to go through a still-birth, since it is way too late for the sort of termination possible in earlier stage pregnancies? We are not talking about foetuses aborted because for whatever reason, a woman does not wish to go through a pregnancy and have a baby (as in my view is her right).Usually, we are talking about babies that are desperately wanted but who get aborted solely because they are suspected of being disabled - often to the lifelong trauma, grief and guilt of the women involved who can never know if they made the right decision or not.

I am a midwife Lacey, and now a community nurse, so I know what goes on in labour and postnatal wards here in Australia, and then what goes on in the community in later years.
Do you?

On no occasion in 30 years have I seen even one parent coerced to abort their disabled foetus/baby. They are simply presented with the facts, and then left to decide on this very sad situation for themselves.

It is truly awful watching them go through this difficult decision, and then even worse assisting them through the awful early induced labour, if they decide on an abortion.

Not everyone is up for the difficult job of raising a disabled child, and I know this because I visit the elderly parents of disabled children who are old and sick well before their time.
They love their child of course, but not all people are strong enough to take this lifetime commitment on.

I would never presume to say how or what I would do in this situation personally, and I would not condemn the parents for whichever way they decide to go with their pregnancy. It is their decision alone.

You have identified the problem, Suseonline. “They are simply presented with the facts, and then left to decide on this very sad situation for themselves…it is their decision alone”.
This is chilling.
The very offer of an abortion carries with it a subliminal message that the baby is not positively wanted, is not going to be warmly welcomed by family, friends and the wider community. Her baby's death will be tolerated just as easily as her baby's birth.
When a mother, struggling with the normal ambivalence and emotional vulnerability of pregnancy, receives the news that her unborn child has a disability, what she really wants and needs (and is entitled to receive) is an immediate and whole-hearted welcome for her baby and firm community commitment to support for herself and her family.
She needs to meet with other families (parents and children) who have first-hand knowledge of both the difficulties and the joys of living with the identified disability.
She needs the full "facts" in order to dispel the false stereotypes of disability that dominate our society.
The last thing any mother wants to hear, especially in a situation fraught with fear and anxiety, is "it's your choice", that she alone is to have the responsibility of choosing life or death for her baby.
Such a 'choice' implicitly reinforces her deepest fear that she is alone, that the formidable responsibility is hers alone, and so inclines her inexorably towards abortion.
Even an accompanying offer of assistance "should she decide to keep the baby" cannot suffice to undo the damage done by the offer of an abortion at a time when she needs an unqualified acceptance of her child.
I know that under the current medical guidelines nurses are instructed to provide “non-directive counselling”.
Unfortunately, the current government policy of insisting on “non-directive counselling” is in itself an insidious form of dog-whistling, cleverly designed to ensure rates of abortion of unborn children detected to have disabilities such as Down’s syndrome remains above 90%. Continuation of this programmed decimation of unborn children with Down’s under the benign disguise of ‘choice’ is unconscionable

You continue to insist on missing the point of this debate entirely Suseonline. No one - no one - is condemning the parents (apart perhaps from those who condemn parents who decide to go through with a pregnancy despite being warned their child could very possibly be disabled). Your comments innately reflect a very common attitude in our society - revulsion towards and fundamental rejection of people with a disability. And yes, I do know what I am talking about because I am the mother of a very severely disabled son, and despite all the pain caused to us by societal attitudes such as yours, my son has taught me more about love and courage and the true worth of human beings and dignity than anything else I have ever experienced. And yes, it's been tough, blody tough. But it would all be a lot easier if people like you were able to accept the fact that disability is part of the human condition, and that people with disability need to be accepted and included, not constantly given the message that it would have far better for all concerned if they had never been born.

Disability, in 2013, is not the inescapable lot of any parent and parents who chose to give birth to a disabled or retarded child have rocks in their heads.

An imperfect child is the result of an accident of nature. To force a child to have to live with serious imperfections is not the action of a loving parent.

You wouldn't do it to a dog or cat so why destine a child to a lifetime of misery and frustration to say nothing of the pathetic, tortured lives of the poor parents?

We are allowing healthy children to die from starvation and war yet we spend billions keeping imperfect children in a state of endless, needless torture.

Humans have got things arse-backwards, a not unusual situation!

Your attitudinal prejudice, David G., has disturbing similarities to the views of Dr Gerhard Wagner, head of the Nazi physicians in the 1930s. He too used the health and economic well-being of the adults and 'healthy' children to justify medical termination of the lives of children deemed burdensome:

The Nazi eugenics program was promoted as
“…saving the German people from a steady stream of new moral and economic burdens resulting from genetic illnesses… We prevent unhealthy life from being propagated, saving children and their children from new and enormous misery…”

Fundamentally, in Australia today, approval for eugenics is being given with the same two broad justifications that were proffered in Nazi Germany.

The eugenic purpose of the Nazi abortion programme was rationalized as a ‘humane’ measure: to prevent births to a group because it was alleged it would be cruel to give them birth as their lives are “not worth living”; and secondly because they are “a terrible, heavy burden upon their relatives and society as a whole."

Suffering is made to seem as synonymous with evil, and termination of the life of one who suffers as humane and good. Their claim is that they are preventing suffering by terminating lives of those who suffer.

But suffering is part of being alive—it is part of the human condition—and as fellow human beings (not cats, not dogs),we respond to it with compassion and love and solidarity—with life-affirming care—not with killing.

lacey, "But it would all be a lot easier if people like you were able to accept the fact that disability is part of the human condition, and that people with disability need to be accepted and included, not constantly given the message that it would have far better for all concerned if they had never been born"

What disability and what extent of it do you imagine is 'part of the human condition'?

What limits do you envisage? Should there be heroic rescue at birth, resuscitation and continuing medical intervention and support?

While you can do whatever you like in your own case, but you would always demand community support for the consequences of your decisions, and you have no right to inflict your views on others. Best of luck trying to convince people that gross foetal abnormality caused for example by (say) rogue genes, environment and lifestyle decisions including drug use is 'normal'.

We bless medical research for finding better diagnostic tests so that a foetus can be aborted at that stage where significant abnormality is found. Presumably you would prefer that those advances had never been made. However you still want the medical interventions that extend life where it would fail otherwise. That is cherry picking according to your own slanted view of morality.

Rita, most sane adults would prefer not to give birth to a disabled and or retarded child. What is the point of it given that most defects can't be reversed?

We now have the capacity to identify fetuses with abnormalities and there is no real need for any parent to have such a child or to force such a child to live a life that is a mockery of what life should be.

The frustration and hurt suffered by a disabled or retarded child is profound. No matter how much love surrounds them, they can never achieve what they see their healthy peers achieving. For them, to live is to suffer!

Do you like to see suffering, Rita? What possible reason could you have? Why force a child with problems and its parents to live a life of mutual suffering? No one comes out a winner. But then you said that life is suffering.

Therein lies your problem, Rita! I don't like to see anyone suffer least of all helpless kids.

Such wild and sweeping over-generalisations David G! Suggest you click on the link provided by Dr Dunjey in an earlier post and take the trouble to read the article it points to (and the accompanying comments), since it's clear from your contribution that you actually know very little about the many, many, vexed questions posed and issues raised by genetic testing. Nor, from your comments, do you know much about children with disabilities and their parents. As for your noble aim to eradicate and eliminate all human suffering - good luck with that one, lol.

Lacey, given that I am the father of a child with physical and intellect disabilities, I don't need lectures from you.

I have had 40 years to reflect upon the calamity, to watch his suffering, to see how my son's disability has been used by his mother as a club to beat me with and to bolster her own standing in society.

Disabled children are in a lose-lose situation for any parent capable of caring. Only parents that reject their blame for the inadequate child can pretend that all is well.

Only religious folk see some merit in the suffering of the innocent child and its parents. I see none!

Then it is clear that such folk are completely out of touch with reality!

You are right DavidG, and I am sorry for the suffering you and your son have had .

I really dislike being compared with Nazi's in my views on disabilities RitaJ.
How dare you suggest that pathetic argument when I disagree with your views.

I have cared for many very disabled Down's Syndrome children and adults, and I see their sadness and suffering.
If I had a dollar for the number of their elderly parents who actually stated that they were bitter about the way they have had to live their lives, I would be rich.

There is a world of difference between those parents who had a disabled baby with no prior knowledge of this during the pregnancy , and those who are now given a choice if they want to live a life with a disabled child or not...

David, I too am sorry for the suffering you and your son (and his mother) have endured.
I’m sorry too for the bitterness that has resulted.
Perhaps bitterness is not the best counsellor on whether or not the medical profession should co-operate in a system where some human beings are ‘chosen’ to live and other human beings are routinely exterminated.
If our medical profession continues down this path of eugenic ‘choice’, then it is quite likely that some time next century medical associations will be issuing another apology.
Revulsion against Nazi eugenics once elicited a universal commitment “Never again!”. But this commitment is now crumbling. Once again we see the terrible fragility of medical ethics.
Both Dr Leo Alexander and Dr Andrew Ivy, who testified for the prosecution in the Nuremberg Trials, commented on the gradual seduction of the German medical profession by Nazi eugenics .
Dr Alexander, writing in the New England Journal of Medicine in 1947, observed that the fall of the medical profession started with a “subtle shift in emphasis in the basic attitude of the physicians…the acceptance of the attitude...that there is such a thing as life not worthy to be lived” and then moved gradually from “the severely and chronically sick” to encompass “the socially unproductive, the ideologically unwanted…”. Dr Alexander warned that prevention of doctors succumbing again to this “disease” requires “observation and recognition of early signs and symptoms… indoctrination, seduction and propaganda.”
Indeed, Nazi propaganda was highly effective in perverting the public conscience in a remarkably short time.
Dr Ivy, writing in 1949, also emphasizes this point:
“What happened to the medical profession of Germany is stern testimony to the fact that… acquiescence in or even silence before the violation of sacred professional ethics…can lead to dishonour and crime in which the entire medical profession of a country must in the last analysis be considered an accomplice. “
There are important contributions to this debate going on right now in Britain (Parliamentary Inquiry into Abortion on the Grounds of Disability):
http://www.abortionanddisability.org/resources/AbortionSessionTwo110213.pdf

and also in New Zealand:
http://www.savingdowns.com/we-reject-otago-universitys-discriminatory-paper-on-down-syndrome/

Rita, what exactly are you proposing? Are you suggesting the world would be a better place if we ensured that every pregnant women must have her child no matter how seriously disabled it is?

Are you suggesting that we shouldn't rid the world of genetic defects that cause such misery and massive suffering for the afflicted person and their carers alike?

Perhaps you'd like each family to have a seriously disabled child as some weird kind of status symbol?

There is no need for any family to have a seriously disabled child. If we stopped them being born we could have a world free from genetic defects in a matter of a couple of generations.

Wouldn't that be terrible?

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.

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?"

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.