The Abortion Law Reform Association of NZ (ALRANZ) recently published “16 Reasons to Change NZ’s Abortion Laws”, as part of a campaign to lobby on this issue in the upcoming parliamentary elections in New Zealand.

As an advocacy group, we leave the wider abortion debate to others. Our focus is on the rights of the Down syndrome community and prenatal discrimination. But when a group walks head-on into a campaign that tramples over the rights of our community, we will have something to say.

ALRANZ are a small group of extreme abortion advocates who want abortion on request up to birth in New Zealand without restrictions. They support disability selective abortion under the all encompassing “for any reason”. Let’s take a look at their “reasons” for wanting to change New Zealand Law.

Reason 3:

“The language used and the focus on “mentally abnormal”, “seriously handicapped” and “severely subnormal” in the Crimes Act is demeaning to disabled persons.”

Yes, the law is demeaning to disabled persons. Not because of some outdated language though, but because the law discriminates against them by providing for disability selective abortion. Hence, denying them the right to be born free from discrimination.

For clarity, the current law is based on the 1977 Royal Commission’s report on abortion.  The Commission dealt with the issue of “handicapped” persons, stating:

 “It is not immoral to terminate a pregnancy where the fetus is likely to be born with a severe physical or mental handicap, because the burden of the handicapped person to himself and to his parents may be greater than the sum total of their happiness.”

“The termination of unborn life for reasons of social convenience is morally wrong.”

The Commission determined that a termination for social convenience would be morally wrong, but a termination for disability is morally justified. The former are even “unborn life” and those with a disability are a “fetus“. There is clearly a discriminatory bias at play here.

Look at what the Commission had to say about Down syndrome:

Looks like they thought that those with Down syndrome are off less worth than others?

So, New Zealand legalised eugenics by providing for disability as a ground for abortion in 1977 on the reasoning that people with disabilities are of less worth than others and their degree of burden exceeds their happiness. But ALRANZ would have us believe that it is just the language that is demeaning to disabled persons, not the fact that they are targeted for disability selective abortion.

The fact of the matter is that the New Zealand law is discriminatory. It provides a lower level of protection before birth than others based on their ability. Last year a UK Parliamentary Inquiry on abortion and disability reached the same conclusion and recommended that prenatal discrimination be banned.

So, what is ALRANZ’s solution to a discriminatory law then? Lets look at Reason 9:

 “There is a problem for abortions on the grounds of fetal abnormality. This is a ground up to 20 weeks but sometimes the diagnosis is not made until after 20 weeks and the abortion must then be done on the grounds of serious permanent injury to the mental health of the woman. The Abortion Supervisory Committee has pointed out this anomaly to Parliament more than once but no action has been taken. This situation is distressing for the woman and her family.”

Yep, ALRANZ think a 20-week limit on disability selective abortions is a problem. It might miss some unborn children with a disability. It is distressing for the woman and her family.

But hang on. ALRANZ is promoting the same law introduced in Victoria, Australia in 2008 for New Zealand. A law that allows for disability selective abortion up to birth.

Yep. ALRANZ’s solution to this “20 week problem” is to provide for late-term disability selective abortions up to birth.

It takes a special kind of intellectual dissonance to say that the language used in the current law is demeaning to disabled persons whilst complaining that a 20-week limit is a problem, as it doesn’t allow for some late-term disability selective abortions. Now, that is demeaning to disabled persons and their families.

Maybe it has escaped ALRANZ’s attention that women “at 20 weeks” have wanted pregnancies and they are looking for health care for their child.

Let’s be clear. ALRANZ are promoting a law that will provide for the uncontrolled selection of the type of child to be born. That’s discrimination and it offends the basic principles of respect and dignity for human diversity. In the same way that female sex selection is sex discrimination, disability selection is discrimination. It is a form of voluntary eugenics by the mother, and enforced eugenics on the unborn child.

It takes a rather extreme agenda to push for unrestricted disability selective abortions up to birth, whilst pretending that you are concerned with anything that might be demeaning to those living with disability.

There is nothing more demeaning to someone living with a disability than to be told that you life is of such little worth that the law should be changed to allow for you to be killed right up to the moment of your natural birth.

So ALRANZ, keep out of disability rights. Stop promoting laws that will provide for the uncontrolled selection of the type of children to be born. It’s discrimination. It’s eugenics. And it’s not welcome in New Zealand.

 Footnote:

It is extremely disappointing to learn from ALRANZ that Green Party candidates support their agenda. One of their higher-ranking list candidates also seems to be advocating for them in this article.

Do you have a loved one with Down syndrome?

Have you ever wondered how much they are worth?

$74,768.91

Give or take a bit in kiwi dollars – that’s 38,000 British Pounds at today’s exchange rate.

That’s according to this report for the New Zealand National Screening Unit (NSU) that was prepared by Health Outcomes International (HOI). The NSU engaged HOI in 2007 to:

  “…inform its decision as to whether a national antenatal screening programme for Down syndrome should be established in New Zealand.”

That programme was implemented in 2010.

The report is quite long, running to 68 pages. It mostly covers technical aspects of screening and the practicalities of delivering a national screening programme.

It also talks about the costs effectiveness of running a national screening programme for Down syndrome.

Warning: It’s not nice.

“A further assumption regarding the establishment of formal screening programmes is that the programme will be cost beneficial for the population, and the health system.”

and

“….the economic costs of screening outweigh the high costs associated with the long term care needs of an individual with Down syndrome.”

  “It is cost effective as the estimated cost of avoiding the birth of a baby with Down syndrome (about 38,000 pounds) is substantially less that the lifetime costs of care.”

“while some may feel that the cost of about 40,000 pounds sterling to prevent the birth of a baby with Down syndrome to a woman under 30 may be expensive, it is low compared with the costs of caring for someone with Down syndrome.” 

Which is uncomfortably close to this:

“60,000 Reichsmark is what this person suffering from a hereditary defect costs the People’s community during his lifetime. Fellow citizen, that is your money too.”

That is from the Action T4 euthanasia programme. Eugenics. See how they both talk about the costs (read “burden”) of care as a justification for not having them amongst us.

The report also talks about the benefits of screening. They actually mean effectiveness:

“Down syndrome screening programmes are effective in detecting Down syndrome abnormality.”

In the section on “benefits of screening” there is no identification of any therapeutic benefit to the one with Down syndrome, or the mother.

“Reproductive decisions” are listed as a benefit:

Termination is mentioned 17 times in the report.

Bottom line. If you have a child with Down syndrome, they reckon they’re worth $74,768.91, more or less. That’s how much of our money they are happy to spend to stop our children being born.

That’s not nice.

It’s not just the NSU in New Zealand. Most of the research links back to the United Kingdom. THE UK National Health Service have “The Decision Planning Tool (DPT)” This is:

 “… an instrument to aid Trusts, commissioners and health professionals plan, improve and monitor Down’s syndrome screening practices by assessing the costs and effects of first and second trimester screening strategies.”

There’s that word cost again. But this time, the costs and effects are measured by a thing called TOP: Termination of pregnancy, on sheet 8 of their spreadsheet:

With a default rate of 79.3% of all pregnancies involving Down syndrome.

Bottom line. A termination rate of 79%, more or less, makes an effective national screening programme.

That’s not nice.

We like to be nice. Our position statement on screening says:

 “We acknowledge that for some, antenatal screening and diagnostic testing may reassure parents or help some parents prepare for the birth of a child with Down syndrome. We believe that any antenatal screening and diagnostic testing must respect the life and integrity of the unborn child, cause no harm, be only directed towards safeguarding or healing the unborn child and be presented in a way that does not discriminate against people with Down syndrome.”

It looks like others may have a different agenda.

It would seem to be more about money and termination rates.

Or eugenics.

We would prefer unconditional love, acceptance and respecting basic human dignity.

 Rita Joseph with Mike and Rebecca Sullivan

Rita Joseph gave the following presentation to the “Rise up together in the service of life conference”, in Auckland, New Zealand in September 2013.  It explores the issue of prenatal discrimination from the human rights and theological perspectives.

Rita is a skilled human rights expert and has extensive experience in negotiating the texts of numerous United Nations rights documents. Rita provides specialist advice to the Saving Downs team. 

Refuting the anonymity of eugenic abortion

“I have called you by your name; you are Mine”

Isaiah 43:1

Rise up together in the service of life conference, Auckland, New Zealand, September 29^th, 2013

When Pope Francis spoke last week to the International Federation of Catholic Medical Associations, he condemned eugenic selection of human beings as a “widespread mentality of the useful”.  He warned, “The ‘throw away culture’ which today enslaves the hearts and intelligences of so many, has a very high cost: it requires eliminating human beings, especially if physically or socially weaker.” [1]

Eugenic abortion is a part of that “throw away culture”.  Currently around the world some 90% of human beings diagnosed prenatally with conditions such as Down’s syndrome are aborted.  Eugenic abortion has deep utilitarian roots. Way back in 1920, two distinguished German professors: the jurist Karl Binding, and Alfred Hoche, a professor of psychiatry, published “The Permission to Destroy Life Unworthy of Life”.  Hoche and Binding argued that “…the principle of ‘allowable killing’” should be extended …to retarded and deformed children.… The right to live must be earned and justified…Theirs is not a life worth living; hence their destruction is not only tolerable but humane.”[2]   They stressed the therapeutic goal: destroying life unworthy of life is “purely a healing treatment… a healing work.”[3]

Those today who promote eugenic abortion make the same claims.  They do not see that each child is a unique human being—they insist that children with disabilities can be easily replaced by superior children who will have greater well-being and be less trouble for parents, families and authorities. Eugenic abortion is promoted by the medical profession as a reasonable ‘reproductive choice’ for mothers to make and as a humane or necessary ‘quality of life’ decision.

Reason and science

So it is timely that Pope Francis has asked all medical personnel to remember that human life is “always, in all its phases and at every age, sacred and is always of quality…There is no human life that is more sacred than another, as there is no human life that is qualitatively more significant than another.”

And in saying this, the Pope appealed to “reason and science”.  And he is right.

Both reason and science confirm that each unborn child is already in existence, being protected and nurtured in his/her mother’s womb. With astonishing accuracy, we can locate the child within definite co-ordinates of space and time.  The child is not a generic, anonymous foetus. We can identify the child’s father, and whether the child is a son or a daughter. We can ascertain long before birth that the child is a unique member of the human family, biologically, genetically, and genealogically.

Protecting innocent human lives from lethal “treatments” is a matter of justice–it does not need to rely on any particular brand of ‘religion’. It’s an irrevocable part of universal human rights law that is recognized by all rational human beings.

The human embryo is a living human being.  Every human being has a right everywhere to equal protection of the law, including in utero where the child is temporarily living.   This new human being is not out there in the ether, not in some lawless limbo land beyond our universe, beyond the reach of the law, beyond the law’s jurisdiction and responsibility to protect.

It is a very old principle of legal justice that if there is to be a preferential option it should be for the voiceless, for the defenceless.  Justice should not be weighted towards the articulate, the more powerful individuals or groups.  This is a grave juridical obligation required by the rule of law.

The Law must never condone the obliteration of a child’s identity. When the law legalizes eugenic abortion, that is exactly what the law condones.   The child is all too often incinerated or disposed of as toxic medical waste.

The child is given no name, no memorial.

A mother with child goes into the hospital or abortion clinic and only the mother leaves alive.

The records omit the names of the children aborted.

But these children were here.

They were on earth.

They were photographed by ultrasound technicians, their heartbeats monitored.

They were a real and lively presence in their mothers’ wombs.

Every unborn child is already here, 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.

With or without disabilities, every unborn child is a human being. Disability is a mere externality to a child’s inherent humanity.  It can neither impinge on the core humanity of each child nor deter, disrupt, prevent or degrade the inherent value owed to each and every child as an equal member of the human family.

It is not age or size or independence or being ‘perfect’ that confers inherent dignity and inalienable rights, it is just being a human.

This is the irrevocable legal basis of all human rights.

The transcendent dimension

In the Pope’s address last week to doctors, the Holy Father went on to ask them to help “recognize in human life the transcendent dimension, the imprint of the creative work of God, from the first instance of conception”.

Here today I am going to try to do my bit to help recognize that transcendent dimension.  It is this dimension that provides the truth to enable us to defend and to rescue a little unborn child diagnosed with Down’s syndrome, Spina Bifida or some other condition targeted for eugenic abortion by a “throw away culture”.  It is transcendental truth that holds the potential to recognize and reinstate that child as “the creative work of God”, always “sacred …always quality”.

When we contemplate the immensity of God, our first reaction is humbleness.  It is as humble human beings that we mark our own place on this speck-like planet spinning in the cosmic vastness of a seemingly indifferent universe.  It is with humbleness that we register our own presence within this tiny sliver of time in the infinite lengths of eternity.

And yet, we come into existence as privileged creatures.  In the vastness of the created universe, we alone are called by name.  Of all creatures living we alone are privileged with free will and intellect.  We alone are created in the image of God. The gift of intellect equips us to search, to explore for truth, to marvel at, to appreciate the exquisitely ordered universe that makes life on earth possible and good.  And how precious the gift of free will to fragile human beings set amidst the awesome mathematical precision of a formidably imposing universe!

In Jeremiah 1:5, God says to each one of us:  “Before I formed you in your mother’s womb, I knew you…”  And in Isaiah 43:1 “I have called you by your name; you are Mine”.

And God named Himself to Moses and to us:  “I Am Who Am”.

Each one of us conceived is made in the image of God, each one is called by name.  Each shares in the “I” and the “Who” and the “AM” of God’s name.   Each one is conceived as ‘who’ not ‘what’.

“Things have a price…but persons have a dignity”

When we speak of each embryonic human being, we must call each by name.  We must use the personal pronouns I, you, he, she never ‘it’   Never, never, never “it”!

Each tiny new human being is a person, a subject never an object, a somebody, never a mere ‘thing’.

As Pope Francis said last week: “Things have a price and are saleable, but persons have a dignity, they are worth more than things and they have no price.”

This is the truth that we have to proclaim to the world today. Because in a sense, the root of all the evils in our world stem from our failure to recognize our true human dignity which doesn’t come from what we do or what we are able to do but from who we are.

Free will privileges us to belong to God.  We are not ‘things’ to be owned, but are gifted with intellect to recognize God and with free will to choose to belong to Him.

Each unborn child in light of the grandeur and purposefulness of the universe

Yet, we are tempted to downsize God.  We tend to doubt the possibility of His extraordinary love and concern for each one of us.  We tend to be misled by the impossibly inadequate calculus of our own extremely limited capacities.

Nevertheless, to even begin to get a true inkling of God’s infinite love and personal care for each one of us, perhaps we need to use the intellectual gift of imagination fired by the knowledge that Science has brought to us, knowledge of the grandeur of the universe and its purposefulness.

Two weeks ago, the Planck space probe looked back at the afterglow of the Big Bang, and reported results that added about 80 million years to the universe’s age, putting it at 13.81 billion years old.

The probe enabled further corrections:  the cosmos is expanding a little more slowly than originally thought, has a little less than estimated of that mysterious dark energy.  Scientists assure us that these are small corrections in calculations about the universe, whose numbers are so massive.

Brian Greene, a Columbia University physicist, called the findings “a wonderful triumph of the mathematical approach to describing nature…It’s an amazing story of discovery. The precision is breathtaking…measuring temperature variations in space — which arose from processes that took place almost 14 billion years ago — to one part in a million.  Amazing.”[4]

It is amazing indeed.  The object and purpose of our intellect is to seek the truth. We are able to see now far beyond our own little backyards, past small creeks, past mighty rivers, beyond the fertile valleys and plains, across fearful deserts, far beyond the great oceans and the tallest mountain ranges.  With increasing clarity now we see beyond earth’s boundaries, beyond even the sun and the moon and the stars of our little galaxy, beyond the boundaries of our solar system even to the edges of the universe.

And we see that it is good.

And when we come back to earth, we see the same awesome order in quantum physics, in the smallest particles of the tiniest molecules.

And we see it in a tiny human being, newly conceived in his/her mother’s womb.

And we remember:

“Are not two sparrows sold for a penny? Yet not one of them will fall to the ground outside your Father’s care. And even the very hairs of your head are all numbered. So don’t be afraid; you are worth more than many sparrows.” (Matthew 10:29-31)   And again, we remember the Good Shepherd who leaves the 99 to rescue the one.  “In the same way it is not the will of your Father in heaven that not one of these little ones should be lost.” (Matthew 18:12-14,)

For God’s infinite love, for His Divine providence, immense numbers present no difficulty for bringing good, even out of suffering.

Each child conceived and born is a reaffirmation of life, of the goodness of life.  Each child—a gift of inestimable value.  Even an imperfect, pain-ridden, pathetically shortened human life is yet a triumph over nothingness, a triumph of an heroic will to live. Each of these more easily wounded children have defied immense odds just to be alive and to stay alive.   Each one is a hero.

As are the parents who love and care for these heroes—they have loved them and suffered for them and with them, and day after day, night after night, have affirmed each fragile presence here. They have supported their children’s will to live and kept their children from deadly harm. They have acknowledged them as their sons and daughters and comforted them.   Their triumph has been to love them and to go on loving them in an all too often hostile world.

This is heroism in the true sense of the word.  Our world would be poorer without them.

A little less than the angels

 Human life is “always sacred…always of quality”.  Truly abortion of one of these little ones on the grounds of disability is utterly repulsive—it is a sacrilege.

You see, each little child conceived in a mother’s womb is sacred—twice-blessed—sacred not just because the child is created in the image of God but because God Himself once took on the image of this little child.

Because of this “double image”, every child is truly sacred.

Because once upon a time, in real time and at a real place the Son of God took on the image of His created ones.  He became a human being.

In taking on our human nature, He is conceived, and grows in His mother’s womb for nine months, he is born and lives and dies among us, for us, as one of us.

In this incomparable mystery of the Incarnation, God visits His people, not only sharing our human lives but sanctifying them, making each life sacred, raising every human being to a dignity and worth, greater even than that given us originally in the Garden of Eden, before the first sin.  Remember what we sing in the Easter Vigil?  “O happy fault to have won for us so great a Saviour!”

In the mystery of the Incarnation, we see our Father’s magnanimity, we see this extraordinary magnanimous gesture: we see the Divine ease and grace and power and beauty with which God transcends the limits of our human understanding of what is scientifically possible…

In this magnificent mystery of the Incarnation, the Infinite One becomes small in His mother’s womb—so, so small—as small as each one of us when we were conceived.

And so the Old Testament asks: “What is man that thou art mindful of him?  Or the son of man that thou visitest him? Thou hast made him a little less than the angels, thou hast crowned him with glory and honour: and hast set him over the works of thy hands. (Psalm 8:4-6)

But the New Testament asks and answers a different question ‘Who is man’?

The question was answered once and forever by Jesus from the Cross.  We are truly the beloved sons and daughters of God, each of us called into being by name to be redeemed by the personal love of a personal Saviour, and destined for resurrection and eternal life.

No child is ever conceived without God’s “Yes”

And so there is nothing so amazing, so wonderful in this amazing, wonderful universe than a man and a woman in an act of love co-creating with God, Creator of the heavens and the earth, a tiny new human being, an exquisite new little son or daughter created in the image and likeness of God Himself.

In this deep existential truth about the inimitable preciousness of every unborn child, there is no room for rejection on grounds of some temporal disability or other. 

Our answer to the mentality of the “throw away culture”, says Pope Francis, is “a decisive and unhesitant ‘yes’ to life”. “The first right of a human person is his/her life. He/she has other goods and some of them are more precious [than others]; but life is the fundamental good, condition for all the others”.[5]

This is true.

No child is ever conceived without God’s “Yes”.

No human being comes into this world as ‘a mistake’.  Every human being is created. No one comes by accident or by chance into an indifferent, higgledy-piggledy world. Each one comes always purposefully, into an exquisitely ordered universe. Each one comes into being at conception with a Divine blueprint that is unique, an individualized vocation to love and to be loved, to live a life of meaning, of value, to live a difficult life with grace and courage in profound defiance of the suffering, moral chaos and evil visited upon us for the time being by the evil one through the Fall of our first parents.

The object and purpose of free will—to choose the good

 The problem of evil is perennial.  The temptation to consign the frail and the disabled to destruction instead of to human care grows stronger. It threatens to destroy our own humanity as we begin to lose our most truly human capabilities, the capacity for altruism, for compassion and for unconditional love.  And shattering once again our hard-earned human solidarity, the evils of abortion and euthanasia threaten to plunge us all back to jungle law, survival of the fittest, to regenerate ruthless contempt for the smallest and the weakest by the strongest, the most articulate, the most powerful.

When nations were shattered after World War II, people of all races were shocked by the “acts of barbarity”, the pogroms, the “disregard and contempt” for human lives.[6]  Science had no answers to dispelling evil and restoring good. Science has plenty to tell us about what we are but not about who we are and what we ought to do as moral beings privileged by our Creator with intellect and free will.

For almost a hundred years leading up to World War II, while huge advances in science were being made, Western civilisation had turned away from natural law principles and developed a positivist law built on an ever-changing social consensus with few fixed moral standards.  Moral laws were easily changed by manipulating subjective public opinion: they were based on utilitarianism and relativism not on universal principles.

When Nazi authorities responsible for the eugenic abortion and euthanasia programmes were brought before the Nuremberg judges, the Nazis admitted that they were moral relativists, and they challenged their accusers to be consistent with the moral relativism widely accepted in pre-World War II jurisprudence. [7]

Today we have reverted to the very same positivist legal basis upon which the entire Nazi enterprise of “necessary killing” was mounted and ‘justified’ as ‘lawful’.   When the judges at Nuremberg studied the utilitarian focus of the Nazi legal system, they recognized and identified very clearly the truth that positivist law provides woefully inadequate protection for human beings in vulnerable situations.  The Nazi’s ideological re-interpretation of laws that should have protected the weakest and the most vulnerable were rationalized on grounds of ‘necessity’.  The utilitarianism of the Nazi’s positivist laws was rejected and condemned at the Nuremberg Trials.

And so all the countries of the world came together to draft the Universal Declaration of Human Rights in which they agreed to return to recognition of natural law principles as the true basis for justice.

All the human rights of the Universal Declaration are premised on the second preambular paragraph of the UN Charter of Human Rights (1945), which reads: “…to reaffirm faith in fundamental human rights, in the dignity and worth of the human person.”

Spurred by the scarifying experience of Nazi depravity, nations agreed that human rights are grounded in respect for human nature.  Charles Malik, rapporteur to the Commission on Human Rights which drafted the Universal Declaration confirmed this: “The doctrine of natural law is woven…into the intent of the Declaration.”  If rights were merely products of positive law, he said, they could change but if they “express my nature as a human being, then there is a certain compulsion about them: they are metaphysically prior to any positive law.”[8]

And so for a short time, post-World war II and pre-Cold War, in a moment of grace and chastened honesty, the nations of our troubled world did unite to recognize natural-law rights and responsibilities.

Here at last was universal consensus that we could no longer live as though there is no natural law.  And for many this was realization also of the more profound truth that we could no longer live as though God does not exist.

Our Creator delights in the discoveries of our human intellect

Our Creator delights in right use of human intellect to discover truth that advances the common good.  There are many truths—scientific discoveries of a material nature –discoveries in medicine like the polio vaccine and antibiotics are good, as are the discoveries in cosmology by the Planck space probe.

But they can’t hold a candle to the timeless moral truths rediscovered conscientiously and set down in the Universal Declaration principles: that each human being has equal dignity and worth, that everyone shall have the right to recognition everywhere as a person before the law, the inalienable right to be treated as a person, never as an object, a means or a thing.

And then there are the most valuable truths of all, the discovery of transcendental truths, the truths that bridge earth and heaven, time and eternity.

And Pope Francis shall have the last word on one of these truths:   “Every unborn child, condemned unjustly to being aborted, has the face of the Lord, who before being born, and then when he was just born, experienced the rejection of the world. And every elderly person, even if he or she is sick or at the end of his or her days, bears in himself or herself the face of Christ. They cannot be discarded!”

That, indeed, is one of the most important truths of all.

Saving Downs and the International Down Syndrome Coalition condemn the promotion of eugenics by Whanganui District Health Board member Michael Laws.

Laws made a public statement on his Facebook page on the 8^th December stating that eradicating Down syndrome would be “a bloody fantastic achievement”.

His public statements are false and deeply offensive.

The full text of the public statement is:

 “I think most women, having discovered they’re carrying a Downs Syndrome foetus, would abort. Dear Lord, very natural reaction.

 Incredibly though there are a group of DS activists (the parents of) who want to DENY this test to expectant mothers because they think it has the potential to eradicate Downs Syndrome. And I’m thinking: what a bloody fantastic achievement that would be. Next: multiple sclerosis.”

This was followed by numerous other public statements on Facebook including:

 “I’ll be publishing my views to a much wider audience on the critical need to retain and promote the DS test for pregnant women and offering them easier access to abortions if they test positive, in my Sunday column this week. I see that the abortion rate, once testing positive for suspected Downs, is 91-93% in most western countries so it’s not just an Enzed reaction. If we could eradicate all severe disabilities from humankind then that would be a good thing: save much suffering and heartache. The mapping of the genome project opens that door to improving future human health.”

Accurate information is important. In New Zealand around half of our pregnant women don’t even test for Down syndrome. Of the half that does test, accurate numbers that choose to abort are not known. We do, of course, have many supporters in New Zealand who had positive tests and continued with their pregnancies.

Suggesting that parents don’t want children with Down syndrome is incorrect and hurtful to millions of families. It lowers the dignity of all of our loved ones who have Down syndrome.

There are no Down syndrome organisations in New Zealand that “want to deny this test” (in reference to prenatal screening tests).

The view that eradicating Down syndrome would be “a bloody fantastic achievement” offends the most basic principles of human rights, which recognise the inherent dignity and value of all human life without discrimination. Promoting the eradication of people with Down syndrome from society is eugenics and has no place in civilised society.

People with Down syndrome are to be afforded basic human respect on an equal basis with all members of our society.

Laws has also publically stated:

 “I will continue to support the right of women to test for DS (in fact, I will encourage it) and to abort if they test positive”.

Saving Downs is concerned that encouraging screening and abortions for Down syndrome may breach Ministry of Health policy, the Health and Disability Code of Rights and the relevant provisions of the Crimes Act. We have lodged a formal complaint with the Whanganui District Health Board regarding his position on the board.

We have also formally raised our concerns in this matter with the Disability Commissioner and the Minister for Disability issues.

We have no desire to direct further attention towards Laws’ views other than addressing any false information that is being messaged.

Our focus remains, as always, on upholding dignity, love and respect for our children without discrimination.

Saving Downs is delighted to announce that Asperger’s Syndrome/Autistic Spectrum New Zealand and a number of allied organisations have resolved to publicly support and identify with all of our social justice actions.

As autistic advocates, the groups oppose prenatal eugenics against the autistic community in the same way that Saving Downs oppose prenatal eugenics against the Down syndrome community.

This is a significant development in strengthening the voice opposing ideologies that deny those with genetic syndromes from being afforded full human rights on an equal basis with others.

The full text of their letter of support is:

FORMALLY SUPPORTING SAVING DOWNS

“As you know, our organisation has been following and supporting your efforts since inception and we would now like to formalise that support.

So we are writing on behalf of Asperger’s Syndrome/Autistic Spectrum New Zealand (ASNZ), and organisations allied to ASNZ including Aspiehelp, Aspergophobia, Autistic Union, Aspire Trust and the Wider Wellington ASD Group. Our membership and allied groups have been consulted and unanimously wish to publicly support and identify with every effort of Saving Downs, whether it be the ICC Case, representations to Government, publicity or public appeals.

As autistic advocates, upon joining we all assented to the very first Principle of the International Charter of Autistic’s Rights:

“THE RIGHT TO LIFE: We will prevent eugenic elimination of autistic people by opposing pre-natal testing for autism.”

This is one of the major issues current in autistic advocacy circles, and will remain so while the threat of so-called ‘scientific’ steps towards the unwarranted decimation of our culture is so heavily funded both here and overseas at present, in an unholy rush to ‘get us dead’.

We are a growing, vocal and positive community opposed to the heinous idea that people living with any genetic syndrome should not be afforded a full and critical voice, full autonomy to pursue their inalienable rights against whoever would dare put them as individuals or as a class and culture in peril.

We are prime targets through-out life for bullying and presumption also, and we note that the Disability Rights folk in Government have never approached us once in their claimed effort to somehow allow us a participatory role that laws and conventions specifically mention, despite us now being 2% of the population according to the mis-named United States Center for Disease Control and the New Zealand Ministry of Education here also (Letter of J Curzon, Special Needs, 14 April 2013).

We sincerely wish to have the opportunity to be included in any Working Group or other participatory mechanism, having several advocates more than familiar with this issue available around New Zealand.

Please keep us as informed as you can.”

We look forward to supporting each other as our social justice actions gather momentum.

This week the Harvard Gazette published an article on the “new test for Down syndrome”. It contained the usual offensive language about our community. It contains the usual misleading information about screening. It introduces a new Trojan horse of a “future treatment” to defend harmful current practice. All in a brief, typically medical focussed, article that uses smoke and mirrors to defend Down syndrome birth prevention programs.

The article reports on a presentation by Diana Bianchi, executive director of Tufts Medical Center’s Mother Infant Research Institute at the Harvard Medical School. She has a long record of being involved in developing and promoting birth prevention measures against the Down syndrome community. The Tufts Medical Center represent themselves as “an internationally-respected academic medical center – a teaching hospital where we pride ourselves not only in the sophistication of the care we provide but the compassionate way in which we provide it.’ The Harvard Medical School themselves has, as a Core Commitment, the noble “Service to Humanity”. Unfortunately we see little compassion or service to humanity in the article. One is left wondering how many people with Down syndrome Bianchi knows and loves.

To set the context: when discussing screening for Down syndrome we firstly need to acknowledge that mothers are under health care for the loving, nurturing and trusted support of their wanted pregnancies. Some parents choose screening and/or diagnostic testing to prepare for the birth of their child in a way that is respectful and loving towards their child. However, almost all unborn children diagnosed with Down syndrome are selectively aborted, with further wanted pregnancies lost through invasive testing which carries the risk of causing miscarriage and harm to an unborn child. The dignity of a child does change with a diagnosis of Down syndrome. We advocate that the focus on health care and the love and support of that wanted pregnancy shouldn’t change as a result of a diagnosis. Any discussion that simply presents advances in screening as a “good thing” without addressing the inherent harmful, discriminatory, ablest and eugenic outcomes of current practice offends the basic principle of the dignity of all human life.

Now, let’s get underway in breaking down the language used and understanding what she is actually saying whilst not saying it. The article starts with:

“A new, noninvasive screening test for Down syndrome would allow some women with high-risk pregnancies to avoid amniocentesis and in the future may provide detection early enough for treatment to improve some babies’ cognitive function.”

So, in the very opening statement we have Down syndrome presented negatively as a “risk”. There is nothing wrong with having Down syndrome, is a naturally occurring condition that has always been part of humanity. Presenting a group of people as a “risk” reflects the discriminatory bias of the author. It has nothing to do with those with Down syndrome, who have dignity, like all of us, by simply being human.

We then have new noninvasive screening presented positively to avoid amniocentesis. This is because amniocentesis caries the risk of death and harm to the unborn child. Whilst reducing harm through amniocentesis is a good thing, the implication here is that reducing harm to unborn children without Down syndrome is a good thing, whilst continuing, or even increasing harm, to those with Down syndrome is not considered to present a concern – remember that almost all unborn children diagnosed with Down syndrome have their lives ended by medical intervention. The ethical response to harm is to reduce harm to all on an equal basis. What we have here though, is an unspoken view that the value of one group of human beings has worth and shouldn’t be harmed, whereas the other group (we all know which one) can be harmed because of their genetic difference. Only the collateral damage seems to present a concern to the promoters of new screening technology.

It can’t even be implied that the new tests are safer or reduce the need for amniocentesis. As pointed out in a previous blog relating to screening in the UK, the new tests were hailed as potentially saving 300 lives per year. But,  when you break it down it actually means that the saving of 300 “normal” babies could be at the cost of over a further 700 babies with Down syndrome who are selectively aborted, resulting in a potential net increase in harm of around 400 lives a year lost. So the new tests likely increase harm to pregnancies. It’s just that some lives are more valued by the promoters of screening than others. Bianchi is an expert in this area and should be upfront and honest about these matters.

Bianchi then introduces the Trojan horse argument that the new tests present an opportunity to improve cognitive function of babies. This is a Trojan horse because the new tests are about reducing harm to “normal” babies whilst finding those with Down syndrome for selective abortion.  There is no therapeutic benefit to the child that relies on a diagnosis before birth. Birth preparation and increased pregnancy care can be made following an increased chance screening result. Parents who want to know before birth for their own preparation through an (almost) definitive diagnostic test such as amniocentesis or CVS should be clear about the risks to the health of their child, which statistically outweigh any likely benefit to their child.

Screening programs have only ever been developed to prevent the births of people with Down syndrome because of society’s negative bias against them. Government’s fund national screening programs because birth prevention is considered to be cheaper than providing support.

Bianchi’s statement is also a Trojan horse because she is speculating that a future possible “treatment” may be available. A future possibility cannot be used to justify a current action that harms the Down syndrome community, that’s ethics 101. To suggest that some “future oppurtunity” may arise to defend current advances in stopping people with Down syndrome from being born is offensive.

Then there is the whole concept of improving cognitive function itself. Again, Bianchi is starting from a discriminatory bias, this time that there is something wrong with people with Down syndrome and that they need improving. It’s the old, tired and failed medical model of disability. People with Down syndrome, are, well, people, and we don’t generally go around telling other people that they need fixing. Our community faces daily discrimination from a society that disables those with a genetic difference. Rather than assuming we need to “improve” people with Down syndrome, we first need to be having them at the centre of the debate and remove those social barriers they face, rather than having the medical profession tell them what is best for them.

So, in one short paragraph Bianchi has presented Down syndrome negatively as a risk, presented their lives as of less worth than their fellow humans, falsely implied that the new tests reduce harm when they are likely to increase harm, and presented a Trojan horse that a harmful screening program may have a future benefit in fixing people with Down syndrome rather than stopping them being born.

The misinformation goes on:

“Physicians recommend that all pregnant women undergo initial screening for Down syndrome, and it is recommended that those with positive results undergo amniocentesis, in which a long needle is inserted into the mother’s uterus to extract cells in the fluid around the fetus.”

This is not correct. In the US professional medical societies for obstetrics, genetic counseling, and prenatal diagnosis have issued statements saying the test is only recognized for women already considered at a higher chance for having a child with Down syndrome. That’s very different from “all pregnant women”. There is no justification as to why women should undergo screening for Down syndrome or undergo amniocentesis or CSV and expose their children to harm. It is just presented as something that should be done. No therapeutic benefit is proposed, which places it as being unique amongst other life affirming medical practices. It’s as if were invited to accept that “Doctors know best” and embark blindly down a path that can harm our children because they have decided that people with Down syndrome are less human than others.

Bianchi goes on to reiterate:

“Those alternate screening tests miss 8 percent of Down syndrome cases, however, and also give false positive results about 5 percent of the time. That means that some women may undergo amniocentesis, which, in addition to being invasive, bears a slight risk of causing miscarriage.

The new test, according to Diana Bianchi, executive director of Tufts Medical Center’s Mother Infant Research Institute, misses only a very small fraction of Down cases, meaning that fewer women would need amniocentesis.”

Now there is a whole heap of confusion going on here. On the one hand she is saying that “alternative screening tests” miss 8% of cases and that the new tests would reduce the number of amniocentesis. That’s misleading, the new test is a screening test that gives a chance result. A diagnosis requires an invasive amniocentesis or CVS test. To find the missing 8% would require invasive tests for those pregnancies. Given that almost all diagnostic tests result in the death of the patient, those 8% may actually be happy to have escaped the screening net.

On the other hand she adds confusion by bringing in the 5% false positive results. These are pregnancies with a positive screening for Down syndrome when the child doesn’t have Down syndrome. Most of these unborn children are killed through a selective termination or from an invasive test. But, this is all smoke and mirrors. The underlying assumption here is that harming those without Down syndrome is wrong and that harming those with Down syndrome is acceptable, or even desirable. Two class of human beings, one worthy of life, the other unworthy of life. This attitude by medical professionals is offensive and devalues the lives of those living with Down syndrome and other disabilities. Anything that devalues the lives of people with Down syndrome is unacceptable. The ethical focus would be to reduce harm to all of those pregnancies.

The article concludes with:

“Bianchi pointed out some of the pitfalls to approaches that utilize prenatal screening, including the potential for physicians to learn uncomfortable information, and be faced with the difficult decision of whether to share it. Another challenge, she said, is the pressure not to make a mistake, since some disappointing results may prompt parents to terminate a pregnancy.

“You better be accurate, and you better be sure you’re giving parents accurate information,” Bianchi said.”

Again, the negative language in “disappointing results” as if children are some sort of disposable commodity. And, the inference that a termination of a pregnancy as a result of a mistaken diagnosis would be a bad thing (and it is), whilst terminations involving Down syndrome is just “giving parents accurate information”. Two classes of human beings. One worth saving, the other not. And the need to be accurate – we wouldn’t want them slipping through the net now, would we?

The Harvard Medical School has as a Core Commitment of “Service to Humanity”. On this occasion, though, they have failed miserably in that goal, doing the Down syndrome community one big dis-service in their article. Not so, with one of their esteemed Associates though, who shows how this subject is handled according to the principle of service to humanity.

International disability rights expert Janet E. Lord is a Senior Research Associate of the Harvard Law School Project on Disability. She has recently published an extensive paper on the application of the UN Convention on the Rights of Persons with Disabilities (CRPD) in relation to disability screening programmes. Her qualifications in this field are impeccable. Ms. Lord participated in all of the drafting of the CRPD, serving as advisor to lead governments, expert to the United Nations and legal advisor to Disabled Peoples International. She is a leading expert on the CRPD, publishing widely in the field and designing and implementing disability law and policy reform in more than 30 countries worldwide. She knows her stuff and walks the talk.

Janet’s paper and our blog are both worth reading in detail for those wishing to pursue concerns around disability screening from a disability rights and social justice perspective. The following is the summary of her paper and demonstrates a true service to humanity in this subject area. Janet has this to say about antenatal screening for Down syndrome:

“A disability rights critique casts serious concerns over the wave of genetic testing, in particular antenatal screening.

The historical disadvantage of persons with disabilities has been shaped, reinforced and perpetuated by the idea that disabling conditions represent abnormality and pathological defect. Invidious stereotyping continues to exclude and isolate persons with disabilities who have not generally been accorded the full or equal enjoyment of human rights that international law demands.

The CRPD supports the accommodation of impairment as a natural feature of human diversity. It includes among its general principles respect for human difference, along with non-discrimination, inclusion and participation, all of which are salient features of a disability analysis applicable to law, policy and programming, including prenatal screening programs that may impact whether persons with disabilities are born.

Against these developments, disability advocacy organizations and the body that monitors CRPD implementation – the Committee on the Rights of Persons with Disabilities – are starting to turn their attention to the impact of disability selective screening policies on persons with disabilities and their families, much as sex-selective screening and abortion has triggered concerns – and conflict – among human rights advocates. Some commentators assert that disability-specific screening policies impart the harmful the message that persons with disabling conditions are unwelcome in society.

Moreover, screening for immutable disability characteristics such as Down syndrome – where there is no potential therapeutic value – reinforces internalized oppression according to which disabled persons are devalued, tagged with their impairments and branded as a burden (Newell, 1999; Houghton, 1994; Davis, 1987). Others suggest that the way such screening protocols are implemented in practice has a major impact on birthrates of certain groups of persons with disabilities, ultimately raising serious ethical questions about what kinds of people should be born. Screening policies as practiced also raise human rights concerns regarding the rights of would-be parents who are, arguably, protected against disability discrimination under the CRPD, along with other rights, including the right to information and free and informed consent to medical procedures.

A disability rights critique casts serious concerns over the wave of genetic testing, in particular antenatal screening along with embryo selection, and its implications for core principles of disability human rights such as respect for difference and non-discrimination on the basis of disability.”

The Harvard Gazette article vindicates all that Janet Lord has explained with such clarity.

So, when we see articles from medical folk like Bianchi that simply ignore a disability rights framework, let us see it for what it is. A fundamental breach of the core principles of human rights, a breakdown of commitment to serving humanity and an absence of compassion from a medical community that should be protecting the very community it harms.

Thankfully we have true advocates such as Janet Lord who work tirelessly to defend the dignity of all life and are at the coal face of a new wave of disability advocates pushing back against the new wave of medical eugenics against the Down syndrome community.

All life is precious, and we must support that through unconditional love and compassion.

Callow academics defend introduction of Neo-Nazi language.

Todays guest post is by Rita Joseph. Rita is a Canberra-based writer and lecturer. For more than three decades she has been researching, writing and lecturing on the philosophy of the language of human rights. A veteran human rights campaigner, she has been a frequent observer, adviser and participant at the UN.

Today is ANZAC day, when New Zealand and Australia remember those lives lost in World War II.  Today, Rita reminds us that we should not go down that path again.

“This person suffering from hereditary defects costs the community 60,000 Reichsmark during his lifetime.  Fellow German, that is your money, too.”

In a recent article, “Bioethics and the New Media”, two brash young bioethicists, Alberto Giubilini and Francesca Minerva, attribute the adverse public reaction to their earlier paper defending infanticide for disabled children to the “misunderstanding” between their “specialist language”, the language of “academics, including bioethicists” and “everyday language”.  Their earlier paper, published in the Journal of Medical Ethics, advocated parental choice to access ‘after birth abortion’ of children with disabilities.

In this new article, the authors magnanimously concede that the great unwashed public cannot fully appreciate the opportunities of new biotechnologies or the freedom and well-being that some medical options can promote. The public, they say, responds to new “ideas which go against traditional values” with an immediate impulse to rebut the proposal, “prior to any rational, cold reflection”. These psychologically programmed “yuck responses from conservatives”, the authors say, may have evolved to favor human adaptation, but it would be “a deep violation of academic freedom if bioethicists were forced not to publish the results of their research in order to avoid causing a ‘yuck’ reaction in the public”. The authors conclude optimistically that the “yuck” reaction seems to disappear after a while, “when people learn more about a certain practice or when they come to realize that it is useful”.

The term ‘useful’ immediately reveals the utilitarian philosophy which underpins the particular bioethics bent of these authors.  And the authors’ arrogant reliance on time and familiarity to overcome the “yuck” factor  is also indicative of a kind of ideological conditioning that was very effective in medical circles committed to utilitarianism at least once before in recent history.

Writing in the New England Journal of Medicine in 1948, Dr. Leo Alexander, consultant to the Nuremberg War Crimes Tribunal, issued a warning to future generations that the Holocaust began with a small modification of traditional medical ethics:

The beginnings at first were merely a subtle shift in emphasis in the basic attitude of the physicians. It started with the acceptance of the attitude… that there is such a thing as life not worthy to be lived. This attitude in its early stages concerned itself merely with the severely and chronically sick. Gradually the sphere of those to be included in this category was enlarged to encompass the socially unproductive, the ideologically unwanted, the racially unwanted, and finally all non-Germans.

Regarding “ideologically conditioned crimes against humanity”, Dr Alexander warned of the ease with which destruction of life was recommended for those considered either socially useless or socially disturbing. 

Eugenics is always utilitarian. It authorizes those in positions of power to pass lethal sentence on those deemed too troublesome to be allowed to live.   Employing a calculus of utility, bioethicists embracing eugenics pretend to be able to predict just how much suffering will be spared to their victims, and in the long run to their families and the authorities.  They do not see that each child is a unique human being—they insist that children with ‘defects’ can be easily replaced by superior children who will have greater well-being and who will not be so much trouble for their parents, families, communities, and the authorities in charge. Under a utilitarian philosophy  like this, it is the ones at the most vulnerable edges of society who are made to sacrifice the most: this is the reason that French philosopher, Paul Ricoeur, condemned utilitarianism: ultimately, he says, it is always the weakest members of the human family who are sacrificed for what is claimed to be the greater good.

Guiblini and Minerva rest their case on a very dubious claim that the personhood (and the right to life) of human beings depend on their possession of “particular capacities”. Before as well as after birth, those children who have disabilities are to be denied human rights protection: the children for rejection are to be branded as lacking arbitrarily selected “particular capacities”, and to be judged to be “non-persons” even though it is conceded they are human beings.  Such claims are contrary to modern international human rights instruments, including the UN Convention on the Rights of Persons with Disabilities.  

Perhaps the greatest contribution to modern international human rights law made by the drafters of the Inter-American Convention on Human Rights is the consensus definition that “‘person’ means every human being” [Article 1(2)].

From bitter experience of slavery, they understood that human rights belong to every human being because each one is a human being. They understood that it is not in the gift of governments to confer human rights on some human beings and withdraw them from others.

Neither State officials nor academics and not even these smart new toffee-nosed bioethicists have any authority to divide the human race into ‘persons’ and ‘non-persons’, while deeming the privileged group only to be ‘persons’ worthy of human rights protection.

Human rights belong to “all members of the human family”.  (International Bill of Rights).

Human beings even in the earliest stages of life, and irrespective of age or size or disabilities, must not be subjected to discriminatory, arbitrarily defined, logically inconsistent and vexatious tests of ‘personhood’.

It is for good reason that these are termed ‘human rights’ not ‘person rights’.

It is not an arbitrary selection of “particular capacities” that confer human rights; it is just being a human being.

This is the irrevocable legal basis of all human rights.

These two bioethicists are on particularly shaky ground when they claim that their own language may trump the universal language of international human rights law. Neither they, nor their mentors peddling this nasty line of revisionism, Professor Peter Singer and his ilk, have any legitimate authority to redefine unborn children and newborns as “non-persons” lacking “particular capacities”.  Nor do they have any authority to encourage parents to make with impunity ‘choices’ that deny human rights protection to their unborn or newborn children on the grounds of disability.  Attempts to deliberately undermine the fundamental human rights language of the Universal Declaration of Human Rights and the subsequent Conventions are mischievous reprehensible re-interpretations of universally agreed language.  Examine this gem of unauthorized tampering with the language of human rights:

The word “person,”…means something like “human being” or “individual” in everyday language, but in bioethics there is a difference between saying that someone is a human being and saying that they are a person, as persons are usually considered individuals with particular capacities. This explains why in a scientific journal the claim “dolphins are persons” sounds quite different from the same claim made, say, in a newspaper. It also explains why many bioethicists think that embryos and fetuses are not persons, but they still think that they are human beings and individuals. On the other hand, in everyday language people normally use “person,” “human being” and “individual” as synonymous.

As these two bioethicists prattle on like this, I wonder if they even know or care that back in the 1930s, dehumanizing language among certain academics paved the way for medicalised killing.  This is still confronting. Small Jewish children were classified “non-persons”, were renamed “Jew-dogs” and “parasites”, children who were disabled were disparaged as “life unworthy of life”, and the unborn children of Polish and Eastern workers were labelled “racially inferior offspring”.  Re-definitions facilitated the killing programmes.  Always the dehumanizing language came first, and then came the exterminations, the aborting of human lives ideologically reclassified as “non-persons”, and deemed totally expendable.

It is both disturbing and regrettable that the “choice” being proposed in the authors’ original paper has chilling similarities to the Nazi process of ‘selection.’

A questionnaire was prepared in which the attending physician provided a detailed history. The doctors also made predictions about the baby’s future quality of life. The questionnaires were then sent to a committee of physicians who determined whether to give the child a mark of “+”, which recommended extermination.  (Forgotten Crimes: The Holocaust and people with Disabilities.  A Report by Disability Rights Advocates, California, 2001 pp. 13-14.) 

Do these callous young authors even know where the concept they use “lives…not worth living” came from?

Do these authors know that they are following in the footsteps of two once distinguished but now infamous German academics: the jurist Karl Binding of the University of Leipzig, and Alfred Hoche, Professor of Psychiatry at the University of Freiburg?

Way back in 1920, Hoche and Binding argued that “…the principle of ‘allowable killing’ should be extended to the incurably sick… The right to live must be earned and justified…Theirs is not a life worth living; hence their destruction is not only tolerable but humane.”   The crucial work — “The Permission to Destroy Life Unworthy of Life” (Die Freigabe der Vernichtung lebensunwerten Lebens) included as “unworthy life” not only the incurably ill but large segments of the mentally ill, the “feebleminded”, and “retarded and deformed” children. More than that, the authors professionalized and medicalized the entire concept. And they stressed the therapeutic goal of that concept: destroying life unworthy of life is “purely a healing treatment” and a “healing work.” (Robert Jay Lifton:”The Nazi doctors: medical killing and the psychology of genocide” p.46 (1986)).

The Nazi directors of the German abortion and euthanasia programmes embraced the concept of ‘life unworthy of life’ (See the policy speech by Gerhard Wagner (head of the Nazi physicians association): “Rasse und Bevölkerungspolitik,” Der Parteitag der Ehre, vom 8, bis 14, September 1936. Offizieller Bericht über den Verlauf des Reichsparteitages mit sämtlichen Kongreßreden, Munich: Zentralverlag der NSDAP., 1936, pp.150-60).

Today, Guiblini and Minerva appear to be ignorant also of the fact that the term “after birth abortions” is not original either: it was already in use by Hitler’s physicians:

“Making widespread use of the Darwinian term ‘selection’, the Nazis sought to take over the functions of nature (natural selection)… in orchestrating their own ‘selections’, their own version of human evolution…Newborn infants with Down syndrome were identified at birth and placed on a register for lethal medical treatment after a perfunctory examination by a board of ‘specialist’ doctors: the Reich Committee for the Scientific Registering of Serious Hereditary and Congenital Illnesses (Reichsausschuss zur wissenschaftlichen Erfassung erb- und anlagebedingter schwerer Leiden), headed by Karl Brandt, Hitler’s  personal physician.   On August 18, 1939, the committee issued a decree that required reporting of all newborns and infants under the age of three with suspected “serious hereditary diseases.”  These “diseases” included Down’s syndrome, deformities, paralysis, deafness, blindness, and others. While physicians had been unofficially killing babies “unfit to live” since at least 1933, the creation of this committee officially authorized such killings.  Dr. Karl Brandt explained the aim: “The objective was to obtain possession of these abortions and destroy them as soon as possible after they had been brought into the world.”  (Henry Friedlander: The Origins of Nazi Genocide: From Euthanasia to the Final Solution (Chapel Hill: University of North Carolina Press, 1995, PP.57-8)

Perhaps the only excuse for the atrocities being proposed by these authors today is that they are either too egotistical to care or too ignorant to know about the Nazi precedents to what they are advocating in their recent Journal article.

We should not go down that path again.  

The fallout from the Otago University Bioethics paper on screening for Down syndrome continues in a new paper “Bioethics and the New Media” by Alberto Giubilini and Francesca Minerva, the same authors of a paper last year supporting infanticide for Down syndrome.

This time Giubilini and Minerva are expressing surprise that the Down syndrome community opposes their agenda of eugenics and infanticide. They seem to think that they need to reconsider how they communicate to the “non academic public” because we don’t accept their views.

In their new paper Giubilini and Minerva start with saying:

“A few months ago, Gareth Jones and Robert Cole published a paper in the New Zealand Medical Journal in which they argued that it is better to use non-invasive prenatal diagnosis tests for Down syndrome rather than more invasive ones. The paper, quite surprisingly, elicited some very heated reactions from the public.”

In this case the “public” is Saving Downs and our supporters, who rightly condemned the paper. To recap, the Jones/Cole paper stated:

“First, we value an ethic that stresses the importance of ‘doing the most good’. On these grounds we accept that in some cases, the perceived disadvantages resulting from a Down syndrome pregnancy (to child and family) may outweigh the perceived good from the child’s life.”

As pointed out in our rebuttal this statement is eugenic and discriminatory. What is so surprising that the Down syndrome community would object to such an attack being made against them?

The Disability Commissioner has said, in response to our complaint lodged with the Human Rights Commission (HRC) about the Jones/Cole paper:

“The paper raises serious human rights issues needing the commission’s attention. The HRC is developing a work plan around bio-ethical issues and disability, and will be incorporating into this plan work in direct response to the article.”

If Giubilini and Minerva are really surprised that you can go around insulting a section of society like this without a reaction, then they really are somewhat disconnected from the reality of living with Down syndrome and the reality of how to treat others.

Giubilini and Minerva then continue with:

“About a year before this episode, even more violent reactions were caused by a paper on abortion that we published in the Journal of Medical Ethics.”

That was the paper they wrote where they argued that infanticide should be permissible for Down syndrome.

They then question how they (the academics) should refocus the delivery of these pearls of wisdoms to the rest of us (the non academics):

“These recent events seem to suggest that we need to rethink the way results of academic research are communicated to the non academic public: How should academics communicate and spread the results of their research among the lay public? And how should the media report and disseminate the results of academic reflection on bioethics?”

And why exactly do the bioethicists think they need to rethink the way results of academic research are communicated to the non academic public? This is what they tell us:

“Although these questions are relevant for any field of academic research (to the extent that they have a practical or cultural relevance for society and individuals), they are particularly pressing for bioethicists for at least two reasons.

First, the political agenda in democratic countries is becoming increasingly concerned with regulation of biotechnologies, of medical practices and health-related issues which, in turn, have a deep impact on the life of people and on their choices.

Second, issues in bioethics deal with topics, such as life, death, the moral status of human beings (and many others) that touch upon people’s most profound and personal values. For this reason, very often ideas which go against traditional values are perceived with an immediate feeling of shock and an immediate impulse to rebut the proposal, prior to any rational, cold reflection.

And the problem is that such reactions cannot be easily dismissed as a sign of irrationality of people who cannot fully appreciate the opportunities of new biotechnologies or the freedom and well-being that some medical options can promote.”

So, in good old plain English: They would like to dismiss anyone who disagrees with their conclusions as being irrational because we don’t appreciate the opportunities of what they promote. Well, that is all very elitist and pompous, but what exactly are these opportunities of freedom and well-being they promote that we don’t appreciate?

Well, we have already seen Jones and Cole theorise that in can be in the greater good not to have children with Down syndrome in our world because of a perceived disadvantage to themselves and their families. That is just plain old academic nonsense, based in perceptions rather than fact and totally removed from the actual experience of people living with Down syndrome. We have fully rebutted that paper here. (It was also covered on the 31 March 2013 TV1′s Q&A programme. There are three parts to the feature, the interview with Rob Cole co-author of the paper and Mike Sullivan of Saving Downs, the interview with the NZ Disability Commissioner and the panel discussion. There is a video and transcript for each of those at this link. You can also go to the on-demand episode of Q&A for 31 March 2013 and it starts at 25 minutes).

And what of Giubilini and Minerva themselves? What opportunities of freedom and well-being do they promote that we don’t appreciate?

That it should be permissible to kill new born babies who have Down syndrome.

Yep, that’s it. Giubilini and Minerva support killing babies with Down syndrome.

And there is a problem, because the non-academics don’t agree.

And there is another problem. The Down syndrome community isn’t lying down and been rolled over.

And we can’t be readily dismissed as being irrational.

And the solution? Giubilini and Minerva want to change the way they promote this wonderful opportunity that we were denied to kill our babies after they were born. Because we were denied the freedom and well-being that we would have had with this wonderful idea they want to promote.

I think that at this point, most rational people will have worked out there is a serious disconnection between this academic nonsense and the reality of what it means to be human and to recognise the dignity of all human life. After all, the dignity of all human life is the founding principle of human rights, one that Giubilini and Minerva are trying to redefine.

So what did Giubilini and Minerva say in their paper promoting infanticide? It’s pretty ugly, cruel, offensive and dehumanising, but here goes:

“An examination of 18 European registries reveals that between 2005 and 2009 only the 64% of Down’s syndrome cases were diagnosed through prenatal testing. This percentage indicates that, considering only the European areas under examination, about 1700 infants were born with Down’s syndrome without parents being aware of it before birth. Once these children are born, there is no choice for the parents but to keep the child, which sometimes is exactly what they would not have done if the disease had been diagnosed before birth.”

So, they start with the classic eugenic argument of referring to people with Down syndrome as a disease. They then infer that some parents would have aborted said disease without providing any evidence to support this.

And then the hateful, nasty, cruel and inhumane stuff. Actually “disease” is pretty nasty, but it gets worse:

“Although it is reasonable to predict that living with a very severe condition is against the best interest of the newborn, it is hard to find definitive arguments to the effect that life with certain pathologies is not worth living, even when those pathologies would constitute acceptable reasons for abortion. It might be maintained that ‘even allowing for the more optimistic assessments of the potential of Down’s syndrome children, this potential cannot be said to be equal to that of a normal child’. But, in fact, people with Down’s syndrome, as well as people affected by many other severe disabilities, are often reported to be happy.

Nonetheless, to bring up such children might be an unbearable burden on the family and on society as a whole, when the state economically provides for their care. On these grounds, the fact that a fetus has the potential to become a person who will have an (at least) acceptable life is no reason for prohibiting abortion. Therefore, we argue that, when circumstances occur after birth such that they would have justified abortion, what we call after-birth abortion should be permissible.”

So they have just presented the “unbearable burden” case for eugenics. Jones/Cole used a similar argument with the term “disadvantaged”. Giubilini and Minerva have then just extended it to infanticide (what they term after-birth abortion in some bizarre attempt to redefine the word) because in their world a baby, is, well, not a person, and therefore it should be permissible to kill them. Especially if they are a “burden”. Even more so should they have Down syndrome.

That is the opportunity they want to promote, the one the non-academics don’t appreciate, killing babies with Down syndrome.

In their new enlightening paper Giubilini and Minerva conclude with:

“It seems to us that, in order to promote a properly informed participation of the public to the academic debate in bioethics, it is important to encourage and to facilitate the translation of the bioethics language into a less specialized language, and to put more effort into providing readers with an appropriate explanation of the context in which ideas are developed as well as the state of the art of the actual debate in bioethics.”

It seems to me that what is required is for the bioethics community to start showing the Down syndrome community a bit of respect and start behaving in a way that respects the basic dignity of all human life. Gosh, they could even involve the Down syndrome community in a respectful dialogue, rather than making academic judgments about the value of their lives.

If they want to use different language, they could start talking in terms that define the basic elements of being human. Like:

Unconditional love: Love that is without any condition what-so-ever.

Compassion: the selfless respect and service of another’s needs.

Acceptance: accepting another person as a unique individual worthy of respect and dignity.

Dignity: recognising the innate right to respect and ethical treatment.

All of those human terms would be a fresh change for the language of the bioethicist who sees those with Down syndrome as “burdens”, “disadvantages” and worthy targets for infanticide. All based in their own ignorance, fear and academic theory, as opposed to the actual lived experience of our wonderful community.

The irony is that when you have a child with Down syndrome, you learn so much about those defining human qualities. When we mature in life, we often start to think about how we contribute to making the world a better place. We start to take actions to create a culture where love triumphs over ignorance and fear.

I wonder about bioethicists like Giubilini and Minerva. When they approach their own deaths, will they look back at their contributions to the world and be happy that they were the ones who promoted infanticide against our community? Somehow I doubt it. Love will triumph in the end.

Saving Downs has lodged a complaint with the Human Rights Commission over views expressed in the recent publication of a paper in the New Zealand Medical Journal that promotes eugenics against the Down syndrome community.

In the paper, bioethicists from the Otago University Bioethics Centre present a case for eugenics under the justification of “doing the most good” due to the “perceived disadvantages” of the life of a child with Down syndrome. In their paper they state:

 “First, we value an ethic that stresses the importance of ‘doing the most good’. On these grounds we accept that in some cases, the perceived disadvantages resulting from a Down syndrome pregnancy (to child and family) may outweigh the perceived good from the child’s life.”

Saving Downs view the selection of the type of child to be born based on a “perceived disadvantage” as discrimination and a form of eugenics.

The views expressed in the paper are in direct conflict with the UN Convention on the Rights of Persons with Disabilities (CRPD), to which New Zealand is a signatory. The purpose of the CRPD is articulated in Article 1 as:

“To promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.”

Saving Downs Spokesman Mike Sullivan explained that “Article 8 of the CRPD requires the adoption of immediate and effective measures to combat stereotypes, prejudices and harmful practices relating to persons with disabilities.” Mr Sullivan also observed that the published paper undermines respect for difference and diversity that is required under Article 3.

Mr Sullivan said that their complaint “requests that the Human Rights Commission condemns the views expressed in the paper and takes immediate and urgent steps to protect the Down syndrome community against eugenics to ensure their fundamental rights and freedom.”

Mr Sullivan concluded by saying that “The publication of views that children with Down syndrome are a perceived disadvantage, and that not having them in our society is “doing the most good”, are totally unacceptable. The Human Rights Commission must protect the rights of children with Down syndrome to be born into our society without prejudice.”

For more information see this blog.

Update 3 April 2013

The Human Rights Commission has responded to our complaint regarding the Otago University bioethics paper on screening for Down syndrome. They have said that the paper raises serious human rights issues needing the commissions attention. The HRC is developing a work plan around bio-ethical issues and disability, and will be incorporating into this plan work in direct response to the article.

On 31 March 2013 TV1’s Q&A programme covered this complaint. There are three parts to the feature, the interview with Rob Cole co-author of the paper and Mike Sullivan of Saving Downs, the interview with the NZ Disability Commissioner and the panel discussion. There is a video and transcript for each of those at this link. You can also go to the on-demand episode of Q&A for 31 March 2013 and it starts at 25 minutes.

]]> https://www.savingdownsyndrome.org/complaint-lodged-with-the-human-rights-commission-over-eugenics-paper/feed/ 4 https://www.savingdownsyndrome.org/press-release-otago-university-bioethics-director-must-resign-following-discriminatory-paper-on-down-syndrome/ https://www.savingdownsyndrome.org/press-release-otago-university-bioethics-director-must-resign-following-discriminatory-paper-on-down-syndrome/#comments Mon, 04 Mar 2013 23:36:44 +0000 https://www.savingdownsyndrome.org/?p=3566 Otago University Bioethics Director must resign following discriminatory paper on Down syndrome

Saving Downs demands the resignation of Otago University’s Director of Bioethics following the publishing last week of a highly offensive and discriminatory paper about prenatal testing for Down syndrome.

Professor Jones acknowledges that “prenatal testing may result in fewer people with Down syndrome” and then attempts to dismiss any ethical concerns over such an outcome. Such a possibility is extremely problematic as it devalues the lives of people with Down syndrome by reducing their birth prevalence. It is in direct conflict with basic principles of human rights and dignity.

Professor Jones states in his paper:

“First, we value an ethic that stresses the importance of ‘doing the most good’. On these grounds we accept that in some cases, the perceived disadvantages resulting from a Down syndrome pregnancy (to child and family) may outweigh the perceived good from the child’s life.”

He is reported here as saying:

 “For some families, raising a child with Down syndrome will be immensely difficult, and it is for this reason that we allow the option of termination.”

These statements are false. Children with Down syndrome live good lives and are loved and valued members of their families. Concepts that they are a “disadvantage” or “immensely difficult” are extreme forms of discrimination that reinforce negative stereotypes towards them. It exposes them to harmful attitudes, bigotry and prejudice. Saving Downs’s spokesman Mike Sullivan said that “There is no place for such attitudes in our society”.

Professor Jones has an established track record of discriminatory language. In this paper on infanticide of newborns with Down syndrome there are offensive quotes such as “suffering from Down syndrome”, “infants with deformities”, and “parents struggling with deformed children”.

Mr Sullivan said that “such attitudes are extremely hurtful and false. People with Down syndrome are not deformities and they are not sufferers. Such concepts are harmful, discriminatory, ablest and eugenic”.  Mr Sullivan calls for Professor Jones immediate resignation, noting that “He has demonstrated an extremely discriminatory view towards people with Down syndrome. Such attitudes are not welcome in our community and are incompatible with a leading academic role relating to ethical conduct”.

In conclusion Mr Sullivan said that “People with Down syndrome must be accorded the full respect and acknowledgement of human rights that are afforded to other New Zealanders”.

A rebuttal of Professor Jones paper can be read here.