Cross-posted from LifeReArranged.
I want to talk about something today. It’s gonna rub some of you the wrong way. Some of you will think I’m being overly sensitive and silly. Some of you will be annoyed with me.
And that’s okay.
I’m an undying fan of Story.
We all live wildly different lives and walk the paths of completely bizarre Story lines, but at the end of the day, we’re all in this together and the only way we can ever begin to understand one another…and more importantly, support one another, is if we speak aloud the matters of our heart.
And so, I want to flesh out with you something that’s bugged me for years. But mostly, it’s made me cringe and made my heart sting even more so lately.
“I don’t care if it’s a boy or a girl…so long as it’s healthy.”
Those words get tossed around by anyone and everyone even remotely affected by an impending birth.
New moms. Dads. Grandmas. Aunts. Cousins.
If someone you love has a growing belly and a sweet heartbeat (or two!) inside, while you might prefer a certain sex, the end wish is for HEALTHY. You might dream of all things pink and sparkle, but either way, you’re happy if it’s healthy. Or, as often the saying goes, “has ten fingers and ten toes”.
And I get that. Truly. It makes perfect sense. No one wishes for hardships. Particularly those affecting the sweetest, squishiest , most deliciously lovable newborns among us.
Does anyone actually WANT their child to live a life of suffering?
Does any parent or grandparent actually DESIRE for the new littlest to need a host of specialists and medications?
OF COURSE NOT.
And believe you me, if I could wave a magic wand right. this. second. and take away my girl’s cerebral palsy, do a rain dance and whisk away her epilepsy, I would do it in a heart beat.
OF COURSE I WOULD.
To think any differently would be insanity.
Make no bones about it: I am deeply saddened that Jill suffers. My heart wrenches when I see how it affects her siblings. My gut churns when I see a twinkle of defeat in her daddy’s eyes.
I would never wish for my child to walk this path…no matter how darling she looks in her metallic walker, and if I could do ANYTHING…anything at all…and then see her jump and play and run and yes, even fall, without fear of a 911 call and an ambulance ride, you better believe I would do it in a heartbeat. Half a heartbeat. My dream of all dreams would be to see my girl jump rope and then read me a story.
So trust me that I get it when people say “…so long as it’s healthy.”
I get it. Deeply. Profoundly. Minute by minute. Every day of my life I get it.
But the cringing comes from a deeper place. A place that worries what it says, on some level, about the worth of my daughter whose seizures last hours and cost thousands. About the worth of my friends’ son who has seven fingers and not the widely hoped for ten. About sweet Brock whose family fought tooth and nail for an exhausting three years to beat cancer.
About the place prescribed, even unintentionally, to all the children that society wouldn’t consider “so long as it’s healthy.”
But mostly, I worry of little ears overhearing these sentiments. This figure of speech we toss around without thought.
How does the preschooler, the one in remission who spent last Christmas in the ICU, feel when he hears his teacher, glowing that first time mom glow, rubbing her belly in the way only pregnant women can, smiling warmly and telling another mom…”Oh, we don’t really care what it is. So long as it’s healthy.”
The little girl in a wheelchair, rolling past a set of strangers in the checkout line, catching up on life and giddy with the announcement. ”We’d love a girl…but really, as long as it’s healthy, it really doesn’t matter.”
The teenager scanning her Facebook feed, especially during the November Thankful a day madness, seeing messages of “Today I’m thankful my family is healthy!” ”Day 16: thankful for a healthy baby girl in my tummy!” ”Day 22: grateful for my happy, healthy kids!”
Because here’s the thing that rips at my mama’s heart: sure, you and I, we know what those people mean. We know that aren’t meaning to be rude. And really, it is a great thing to be thankful for. Of course it is.
But kids are notoriously literal. They are incapable of unpacking intent. Of seeing the bigger picture of what is really being said. Kids can’t peel away the layers of meaning. Because all that little boy can hear is: “…so long as it doesn’t have cancer. Because I definitely don’t want that. I don’t want him. So long as it’s not him. Then I’ll be happy.”
Because all that teenager sees is “Day 7: grateful that I don’t have her as a daughter.”
Because all that little girl hears is “…so long as it can walk and talk, because I don’t want my baby to be like her.”
Because all Jill will one day hear is “…so long as it doesn’t give me the grief of seizures and equipment to haul around. I can’t imagine having to be her mom. Anything as long as it’s not her.”
Is that what any of us are saying when we rub our overextending belly buttons and shift our weight on swollen feet?
My guess is no. No one is.
But history is riddled with good intentions gone horribly bad. And just because it isn’t what you meant, doesn’t mean it might not still be hurtful. ESPECIALLY when who you speak of is a child.
And to go further, I can’t help but wonder, if maybe subconsciously we ARE saying these things? After all, 90% of fetuses with Down Syndrome are aborted. So are we really being honest, as a society, to say that we don’t mean to suggest all these awful things? If we could test for epilepsy in utero would there also be an associated percentage to report? If we could run biopsies on unborn babes would we see a downshift in childhood cancer rates?
Perhaps we would. And if the answer to that is yes…how can we roll our eyes at the thought that a child, or this grown woman for that matter, might be offended at the seemingly blase “…so long as it’s healthy” figure of speech? Is it really just a figure of speech or is there more under there? Even more than any of us even realize?
And even if none of this is true, could we pause for a moment to consider how our words might impact the most innocent of ears? The ones who have seen the sterile walls of hospitals more times than they should. The ones who have amber bottles lining kitchen counter tops, their names printed boldly along the top of the label. The ones who fight every single day to do what you and I take for granted.
Because as the mama of that little girl, while I would do anything to take away her struggles, I can most assuredly promise you she is still worth it. Our family would be woefully done a disservice to not have her be a part of it. Even if she doesn’t fit the mold of healthy.
So Long As she is here.
That’s what I say. And I wish you could see that too. ”…I don’t care what it is. So long as it is here. So long as I get a chance to know it.”
Day 4,432: grateful she is mine. Thankful she is here. Blessed to have a four incredible kids.
Let’s change the dialogue, friends.
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 8th 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.
Watch the interview on TVNZ here - http://tvnz.co.nz/breakfast-news/michael-laws-sparks-anger-over-down-syndrome-comment-video-5776399
We can talk round in circles all we want, but at the end of the day there is no escaping the fact that killing persons with disabilities in order to create a ‘better’ world was one of the fundamental evils of the Nazi regime.
Not only did the Nazi Aktion T4 euthanasia programme kill an estimated 200,000 children and adults with disabilities and other undesirable traits, but it became the very template that was utilized for the ‘Final Solution’. The architects of the Final Solution adopted the gas chamber and crematoria that were specifically designed for the German euthanasia programme, and staff from the euthanasia programme took on prominent roles in the Nazi death camps which killed approx. 6 millions Jews.
Any person of goodwill should be alarmed by the fact that NZ is operating its very own screening programme which weeds out persons with Downs syndrome, and other conditions, and that the majority of these persons are then killed by NZ abortionists.
And we should be extremely concerned by any person who publicly declares that such unjust screening programmes are helping to create a better world.
To suggest that this attitude is any different to the prejudicial animus that was directed at persons with disabilities by the Nazi regime is nothing more than dishonest semantics.
Just consider the following words from Adolf Hitler:
“Sparta must be regarded as the first völkisch state. The exposure of the sick, weak, deformed children, in short, their destruction, was more decent and in truth a thousand times more human than the wretched insanity of our day which preserves the most pathological subject.”
Now ask yourself whether such twisted sentiment is really all that different from the claim that killing people with Down syndrome in utero is a good thing, or that it will lead to be a better world.
The simple truth is that future historians will not talk kindly of the West for our screening programmes.
They will rightly point out the grave hypocrisy in the fact that, on the one hand we condemned the violations of human dignity perpetrated by the Nazi regime, while at the same time running an almost identical prejudicial campaign against persons with disabilities ourselves.
In the words of Angelika Probst, sister of Christoph Probst, a doctor killed by the Nazis for being part of the peaceful anti-Nazi resistance group ‘The White Rose’:
“I myself did not at first grasp the full horror of the situation. Christoph made it clear to me. He showed me that it was not given to any human being, in any circumstance, to make judgments that are reserved to God alone. No one, he said, can know what goes on in the soul of a mentally afflicted person. No one can know what secret inner ripening can come from suffering and sorrow. Every individual’s life is priceless. We are all dear to God.”
An extraordinary speech against her government’s abortion bill could get a rising star expelled from her party.
A youthful and popular minister in the Fine Gael government, Minister of State for European Affairs Lucinda Creighton, opposes the legalisation of abortion. If she votes against her party’s bill on Wednesday she could be expelled from the Government. This is her extraordinarily powerful speech to the Dáil, Ireland’s parliament on July 1.
I must say that I never imagined when I stood for election to Dáil Éireann for the second time in 2011, that I would find myself here, just 2 years later, speaking on a Government sponsored Bill to liberalise abortion law in Ireland.
I am in no doubt by now that this legislation will pass, notwithstanding the many reservations expressed privately and publicly by colleagues from all parties – indeed, in the face of the grave reservations expressed by experts psychiatrists in two separate sessions of Oireachtas health committee hearings.
I can only hope that logic and verifiable evidence will prevail and substantive amendments will be accepted to ensure that the rights of all human beings are protected with the full rigour of the law.
I have never regarded myself as a pro-life campaigner. I was not motivated to become active in politics because of the abortion issue. In fact I have spoken previously about the fact that I held a very different view on this matter when I was a student.
However, after much reflection, my views have evolved over the years; as I learned more about the topic, as I came in contact with friends and family affected by abortion, and as I matured and developed my own independent analysis of this most sensitive topic.
Crucially for me I stepped outside the “groupthink” which I genuinely believe dominates this debate in Ireland. It seems that if you do not succumb to the accepted view that abortion is a “liberal issue”, a “women’s rights issue”, a cornerstone of the “progressive agenda”, then you are deemed to be a backward, illiberal, Neanderthal fundamentalist who belongs to a different era. The distinct irony of this prevailing view, is that it is so illiberal in its intolerance of any alternative outlook.
Of course I respect the right of people to campaign for liberal access to abortion. Maybe they do not consider abortion to be the intentional ending of human life, and so they simply see it as a medical procedure, which can simply be regarded as a clear-cut choice.
I can appreciate this way of thinking because I used to think that way myself. Carried along with the accepted supposedly “progressive” view on abortion, I never considered the other life involved.
Of course, because of the huge stress and trauma that surrounds abortion, we know that this medical procedure analogy is a sterile, yet dangerous, inaccuracy. I think that the vast majority of us know and appreciate that an unborn baby, is just that, a baby.
If such a baby is born prematurely, we do not simply shrug our shoulders and say this baby has not come to full term, it is merely a foetus, we will not treat it. Of course not. We will do everything possible within the bounds of medical science to save that baby’s life. We know that baby cannot live independently outside the womb, but that is not a cause to give up on it. This is human life after all. We must save it.
Some say this is a women’s issue, that its all about women’s rights. Therefore if you are “pro life”, you are somehow “anti woman”.
Yet, when one steps back from the stifling groupthink, and reflects, I think one arrives at a different view. I am a woman and I am happy to say that I am also very much in favour of women’s rights. But by that I mean all women. Not just adults or adolescents or children – I mean babies too.
The sad reality, as we look around the globe at how women’s rights are advocated, promoted and defended, it is clear to me that abortion is in fact, often a tool for the oppression of women.
Look at China, India, Korea and indeed some parts of Europe and the United States. The societal preference for boys over girls has led to the obliteration of tens of millions of baby girls who were simply never born. A famous feature carried by the Economist magazine in 2010 showed just how females are discriminated against in this age of abortion.
One paragraph from that edition of the Economist jumped out at me and frightened me:
Until the 1980s people in poor countries could do little about this preference: before birth, nature took its course. But in that decade, ultrasound scanning and other methods of detecting the sex of a child before birth began to make their appearance. These technologies changed everything. Doctors in India started advertising ultrasound scans with the slogan “Pay 5,000 rupees ($110) today and save 50,000 rupees tomorrow” (the saving was on the cost of a daughter’s dowry). Parents who wanted a son, but balked at killing baby daughters, chose abortion in their millions.
It would be bizarre if we, as legislators and hopefully, as thinkers, did not ask the obvious question “What is the net difference” between such screening followed by intentional gender-based abortion, and the intentional killing of that baby after delivery? The answer is of course none.
The net effect is exactly the same, which is to say that an innocent baby, is simply wiped out. The scale of this exercise is such that in China, by the year 2020, there will be 30-40 million less women than men walking the earth, growing up, having families, going to work and generally contributing to society . 30-40 million less women is hardly a triumph for feminism or liberalism.
The horror of abortion is also to be seen closer to home. The phenomenon of “designer babies” is one if the elements which horrifies me most. This year we celebrate the 10 year anniversary of the Special Olympics coming to Ireland.
That was an extraordinary occasion, which saw children and adults with intellectual disabilities and particularly Down Syndrome celebrated in this country like never before. In a sense it marked the end of marginalization and the beginning of a new era when people with special needs were finally embraced and celebrated like never before.
Many people will not like the juxtaposition of these two issues, but I believe in facing reality. In the United States, a country which initially introduced abortion in extremely limited circumstances, the use of pre natal screening is today absolutely prolific and increasingly acceptable in society.
There are many studies charting disturbing trends but one by F.X. Egan, of the University of Connecticut, showed that of the 122,519 babies expected to be born between 1989 and 2006, only 65,492 were in fact born. Almost 50% of those babies were simply obliterated, because they were not “perfect” whatever that means. I find this shocking and terrifying all at once.
This again shows that this question of abortion is not a liberal issue – far from it. In a liberal society we celebrate life in all its imperfect manifestations. We also celebrate the right of human beings to enjoy life – whether we speak of a criminal on death row, or an innocent baby girl, or a baby with Down syndrome. None of us is perfect, but our life is worthy and we a all worthy of life. Who is any one of us to determine that even one single life is not worth living, not worth protecting?
As I say, I did not stand for elected office to pursue a “pro life” agenda. Of course my view before all of the elections I have contested, was crystal clear, and often repeated on doorsteps in my constituency and on the airwaves. It was of course, no secret that my party, Fine Gael, was a party which unashamedly defended the right to life and issued repeated statements to that effect over the years, including stridently in advance of the last general election.
But I campaigned, as almost all politicians did in the last election, on a platform which was almost entirely focused on the economic future of our country. For me, and for Fine Gael, this was essentially a pro enterprise agenda, concerned with restoring our economic sovereignty, ensuring we emerge from the shackles of our bailout programme. It was about restoring confidence and hope to the Irish people, and doing so in the framework of crucial cooperation with our partners in the European Union.
In the two years and nearly 4 months since our Government was formed, this is what we in Fine Gael have dedicated ourselves to. Along with Taoiseach Enda Kenny and all of our Ministers, I have worked day and night to contribute to this country’s recovery. I certainly don’t want to give up on this work. We still have much to do.
The revelation of the Anglo tapes last week, reminded me of this. It minded me once again of the disease and rot at the heart of the system, which I want to contribute to changing.
But what of another type of rot – one which could enshrine in Irish law, for the first time ever, and in contravention of our express constitutional obligations, a hierarchy of human being in this State. One which says that we can select who deserves to live and who does not.
I’ve had people contact me in recent months condemning me for having a “moral” or ethical concern about abortion. Some demanded that I leave my morals or conscience aside in order to support abortion. Now I must say that I find this bizarre.
There is an emerging consensus in Ireland which suggests that having a sense of morality has something to do with the Catholic Church. It is automatically assumed that if you consult your conscience, you are essentially consulting with Rome. This is deeply worrying. It is a lazy way of attempting to undermine the worth of an argument, without actually dealing with the substance. This is not just a Catholic issue, any more than it is a Protestant or Muslim issue. This is not a religious issue. It is a human rights issue.
I wonder what one should consult when voting on a fundamental human rights issue such as this, if not ones own conscience? My personal view is that all I can do, when making a decision on life and death, and that is what we are considering here, is consult my conscience, which is based on my sense of what is right and what is wrong. What else can I consult? The latest opinion poll? The party hierarchy? The editor of the most popular newspaper?
I mentioned groupthink, which is a corrosive affliction in this country. We saw it in the Haughey era, we saw it during the Celtic Tiger era, and we see it on this question of abortion. It is easy to understand why people in positions of responsibility want thorny issues to simply disappear. It is far easier than risking conflict, unpopularity or worse; paying the price for speaking up…
Wouldn’t the country have been much better served in the 2000s, had more people on the Government benches, in academia, or in the media been prepared to raise their heads above the parapet? I am sure that there were many conscientious objectors who realised that what was happening was wrong, yet they all remained reticent to avoid the wrath of their colleagues, the public, their bosses, the media and so on. Conscience lost out, and the country suffered greatly.
We all have the right to conscientious objection. It is enshrined in Article 18 of the United Nations, Universal Declaration on Human Rights which states :
“Everyone has the right to freedom of thought, conscience and religion….”
I contend that this freedom of conscience is not just a right, but also a duty.
Substance of the Bill
Given my misgivings about this Bill, I am hoping that some substantive changes might be accepted to improve the legislation in order to make it more compatible with our constitutional obligations as legislators.
It is fair to say that sections 7 & 8 of the Bill do not cause me any concern. In fact I welcome the fact that we will be ensuring certainty for medical practitioners and pregnant women in the case that there is “a real and substantial risk to the life of the mother” in accordance with the test set down by the Supreme Court in the X Case.
It is right and proper that all women, including prospective mothers, can benefit from the very highest standard of care in Irish hospitals. No woman should lose her life through inaction during pregnancy. I hope and believe that we are all agreed on that. That is surely a pro life position.
However I am deeply concerned about the inclusion of the so called “suicide clause” in the legislation (section 9). This is, in my opinion, and in the opinion of the vast majority of psychiatrists in the country, is a very worrying step.
Not only does it fly in the face of the evidence presented at both hearings of the Oireachtas health committee, where the overwhelming view of the medical profession was that suicide could never provide a treatment or a solution to suicidal intent, but in addition, this clause has the potential to normalise suicidal ideation by enshrining suicide on our statute book for the first time.
The only way to avoid the introduction of this flawed element of the legislation is to omit it entirely from the Bill. I would urge Minister Reilly to to read and reflect upon the expert psychiatric evidence presented to the Heath Committee hearings. I would also ask him to study the joint statement endorsed by 113 Irish psychiatrists, who unanimously declared in an alarming but illuminating statement that the suicide clause is simply unworkable.
It seems from recent statements from Ministers, that the Government’s view is that there can be no term limit on the right to end a pregnancy by inducing delivery. In other words if a woman’s life is in danger, and the unborn baby is deemed to be viable, there is an obligation to bring forward delivery in order to save the life of the woman while making all efforts to also save the life of the baby.
This of course has the potential to cause major medical negligence litigation in the future. However, I do not propose to address that point here. Others have made that point cogently.
Further to this position, the Government has expressed the view that whether a pregnancy can be ended by means of an abortion depends on the gestational stage of the unborn child. In other words, if a foetus is viable then delivery has to be induced. An abortion is not permitted.
The clear result of all of this is an inherent term limit for abortion within the legislation. If this prohibition on abortion after viability is established, is assumed and indeed articulated publicly by the Government, then why not enshrine it in the legislation?
The leading authorities on Irish constitutional law, Hogan & Whyte in Kelly’s constitution (originally authored by former Fine Gael TD and Minister, Professor John Kelly) support this line of argument and go so far as to say it is “disingenuous” to suggest that the X case allows abortion up until the point of birth.
Logically and legally by this analysis, there is a constitutional term limit already in place, namely the point of viability outside the womb. Both Government and the leading academics agree on this point.
Given that there is agreement between the Government and the leading constitutional lawyers in the State, why should this not be expressly stated in the legislation? I am strongly of the view that an amendment to the legislation clarifying and confirming the legal term limit for the carrying out of an abortion is necessary. It is also perfectly constitutional and further I would argue that it is the absolute minimum protection necessary in a civilised country.
Such a provision would give a firm legal basis to what is already the interpretation of Government, and crucially would provide some reassurance to those citizens with concerns about the possibility of abortion up to full term (which does not exist in any jurisdiction to my knowledge – even regimes where liberal abortion on demand exists impose term limits).
Right to vindicate constitutional rights of unborn
I am entirely perplexed as to why the right to legal representation for the unborn is excluded from this legislation. It is the minimum protection required to be afforded to unborn children.
It is important to remember, at every step of this legislative process, that the unborn child is a human being, a person and has full rights as such under our Constitution. This means that as a “constitutional person” an unborn baby has the exact same right to life as any other living “constitutional person”.
I think this concept can sound a bit abstract to many people. They might ask, how on earth can an unborn baby, with no voice and no capacity, benefit from legal representation. However, in reality, and in the pursuit and vindication of human rights, this is nothing unusual.
A baby one day old can be represented in the courts, and this happens regularly, for example in medical negligence cases, through the “ad litem” procedure. Equally, a person of limited mental capacity can be represented in our courts, in order to have their rights vindicated.
When you think about it, this of course is not a luxury afforded to the most vulnerable people in our society. On the contrary, it is often the only way in which they have their constitutional and human rights vindicated in a world where otherwise they might suffer greatly.
I understand that some people do not believe that a foetus is a person and therefore that it has no legitimate expectation to have its constitutional rights vindicated. This is however simply an idealogical position. It is not borne out by the law or by our Constitution, Bunreacht na hÉireann, which explicitly recognises it as a person, and therefore with the same and equal rights as all other people.
Now I can only assume that the logic behind this omission in the Bill is a view that legal representation is not warranted on the grounds that medical decision making does not warrant consultation with all parties
However, it is hard to think of any other “medical” decision where the rights of a third party (and not that of the patient) are directly affected, so surely legal representation is more (and not less) appropriate in these cases.
Decisions made under sections 7 and 8 of the Bill are purely medical decisions based on empirical evidence.
However, decisions made under section 9, relating to suicidality, are of a different nature. They involve judgments of credibility, veracity etc. by psychiatrists (and not simply empirical observation by doctors) and as a result the decisions should be detailed, forensic, investigative, and will inevitably take place over a period of days.
This difference in nature between the decisions to be made under sections 7&8 and those under section 9 was essentially the central point of former DPP Eamon Barnes’ recent article in the Irish Times.
These decisions are also quasi-judicial in nature, because of the “panels” system, so surely the unborn should be represented.
Constitutional obligation to act
It is impossible to justify a situation whereby the unborn (a constitutional person) would be prohibited from being represented in front of these panels when grown adults (also constitutional persons) are entitled to such representation in front of similar such panels where decisions have a profound impact on their rights, for example in front of Mental Health Tribunals under the Mental Health Act 2001.
Furthermore, it is arguable that the Attorney General has a constitutional obligation to act when there is a public interest in vindicating rights which are identified in the Constitution.
This is acknowledged in much case law as a “privileged role” of the Attorney General. The Supreme Court has specifically recognised this role in relation to Article 40.3.3 the right to life as per Judge Finlay in the X Case. This right or duty of the AG is inherent in the Constitution and therefore should be included in the Bill.
Furthermore, under the Constitution all interested or potentially affected parties to a legal process must be given a right to express their point of view (i.e. the fundamental constitutional right of participation – audi alteram partem – both sides of any case must be heard).
This was reinforced recently by the Supreme Court itself in Dellway Investments Ltd. v NAMA (2011).
Clearly the right to life of the unborn is “capable of being directly affected in a material way” by a decision taken under section 9, under the formula given in Dellway.
Since this is a constitutional principle it is implied into all statutes. It seems likely that the legislation could be successfully challenged on the grounds that no specific mechanism is in place for the position of the unborn (a constitutional person) to be advocated or a means for them to vindicate their rights.
I have mentioned some key areas in which this legislation needs to be amended. I know that Minister Reilly has stated his intention to accept amendments during the committee stage. I take him at his word and assume this means substantive amendments based on evidence, and not just procedural ones.
If this Bill is to genuinely live up to its title “The protection of life during Pregnancy Bill” then it should simply aspire to do just that – provide protection to all lives – no more, no less. It must protect women who’s lives may be endangered during pregnancy, we expect and demand that this be be the case. It must also protect the life of babies in pregnancy. Otherwise the title will simply be misleading.
Ireland is a great country for mothers and babies, where the best possible care has been, and continues to be afforded. This Bill has the potential to change that, and to change the compassionate culture of care which have treasured for so long.
Before I conclude, I wish to read an email I received last night which sums up the essence of the problem with this Bill:
Dear Ms Creighton,
My name is Dr Y. I am a psychiatrist for the last ten years and I am also a woman and a mother. I have experienced both depression and pregnancy.
From all these perspectives I ask you to think long and hard before the vote on the “life on pregnancy” bill, and discuss your concerns with your party colleagues.
Suicidality is not an easy “diagnosis” to make. It is dynamic, not static, with the matters contributing to the suicidal state constantly changing. There is absolutely no test one can make to predict whether someone will die by suicide. Finding out one is pregnant for all the wrong reasons is a devastating life altering thing, but as human beings we try to help people adjust and make decisions in a clear frame of mind. Abortion has never ever been a treatment for suicidal ideation and completed abortion may end up being one of those dynamic factors that pushes someone to contemplate suicide. There is nothing so devastating as guilt to the depressed mind.
Two wrongs don’t make a right, please consider diverting energy and resources to supporting people with unwanted pregnancies, not pushing them down a path that may be detrimental to their mental health later when it is too late.
Thank you for reading this.
This sums up very well why this legislation as currently framed, is considered unworkable by so many experts. I have had countless emails and letters, such as this, from concerned psychiatrists in the past few weeks. I have not received one single letter from a psychiatrist welcoming this Bill or saying that it is necessary to deal with suicidal intent.
Compassionate, clinical care is what is needed and the government should put all possible resources into providing this for young, vulnerable women. Abortion solves nothing.
I know a number of women who had abortions and deeply regretted it. I genuinely do not know any woman who has had a baby and regretted it. No matter the circumstances, the initial stress, anxiety fear, stigma or concern, we must support women in their hour of need. That is simply our moral and constitutional duty.
Lucinda Creighton is Ireland’s Minister of State for European Affairs.
Cross-posted from MercatorNet.
Cross-sourced from the Down Syndrome – So What campaign. For more information on the campaign visit their website – www.downsyndrome-sowhat.eu/down-syndrome-so-what/ . To help spread the message, visit our Facebook page where we have the five campaign photos which can be shared on Facebook.
On March 21, 2013, the 2nd World Down Syndrome Day – made official by the UN – will be celebrated across the world. This event aims to raise awareness about Down syndrome and inform members of the public about this often misunderstood disability, and about the prejudices people with Down syndrome face each day. With advanced methods of prenatal screening now or soon to be available, this day takes on a singular and urgent dimension.
The expanded use of early prenatal screening for Down syndrome threatens to increase the already staggering number of terminations of pregnancies which are prenatally diagnosed. Down syndrome occurs in approximately 1 in 700 births and is a disability caused by the presence of an extra 21st chromosome. The arrival of a new maternal blood test in Europe will certainly cause further stigmatization and rejection.
Many countries still a lack comprehensive health policy requiring that families who receive an unexpected prenatal diagnosis of Down syndrome be provided with information about positive therapeutic developments and outcomes for those living with Down syndrome. In addition, the efforts undertaken to facilitate integration of persons living with Down syndrome into educational systems and work places are clearly insufficient.
In 2013, European citizens, whatever their nationality, first and foremost need to be provided with a positive, and welcoming message about raising a disabled child. Individuals living with Down syndrome and their families are entitled to the same dignity and respect afforded to any other member of society, but that is never what they now receive.
To this purpose, associations from 12 nations: Spain, Portugal, Croatia, the United-Kingdom, Italy, Germany, Poland, Latvia France, Russia, the U.S. and New-Zealand have launched this international campaign to say together:
Down Syndrome… so what!
In this awareness campaign, 5 people with Down syndrome from diverse cultural and national backgrounds, and of different ages (a young child, a young woman, two young men and an older man) call for the attention of the public and their political representatives. Their goal is to lessen the fear of those in society who are uncomfortable with the disabled, especially those living with Down syndrome. Thanks to their beautiful, mischievous and joyful faces, they witness to all of us that happiness is indeed possible for themselves and their families.
On the 21st March, the Fundación Síndrome de Down de Madrid, Canal Down21, Fundación Iberoamericana Down21 (Spain), APPT21, Olhar 21 (Portugal), le Down Syndrome Center Pula (Croatia), Down Syndrome Development Trust (United Kingdom), Coor Down (Italy), Arbeitskreis Down-Syndrom E.V. (Germany), Opole Association for Helping Children with Down Syndrome (Poland), Dauna Sindroma Biedriïba (Latvia), Down side up (Russia), Jérôme Lejeune Foundation (USA), Saving Downs (New-Zealand), the collectif Les Amis d’Eléonore and the Fondation Jérôme Lejeune (France) share the same urgent message and strongly reaffirm: Down Syndrome… SO WHAT!
Controversy has erupted over a paper published by two NZ bioethicists which suggests that genetic screening for Down syndrome is not eugenics, and that newer and more efficient testing should be introduced so that this “would allow women more time for decision-making, and the option of an earlier, safer termination” of babies with Down syndrome.
In this edition of the Edge of Reason Podcast we take less than 10 minutes to explore the flaws in this paper and why it’s central claims about disability rights and screening are simply nonsensical.
Cross-sourced from TheLeadingEdge
Press release cross-posted from Saving Downs.
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 Testing times: do new prenatal tests signal the end of Down syndrome?
“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.”
This statement is false; children with Down syndrome live good lives and are loved and valued members of their families. The concept of a child with Down syndrome as being some type of “disadvantage” is an extreme form of discrimination that reinforces negative stereotypes towards them and 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 discrimination towards the Down syndrome community. In October 2011 he stated:
“The disease restricts the family of the sufferer, the disease effects not only the quality of life for the sufferer but the quality of life for the sufferers direct family. The sufferer needs a considerable more amount care, time and money than a healthy child and needs to be cared for their whole life, not just their childhood”.
Mr Sullivan said that “such attitudes are extremely hurtful and false. People with Down syndrome are not a disease and they are not sufferers. Concepts of “quality of life” for people with disabilities are harmful, discriminatory and point to an ablest and eugenic view of the world”.
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”.
Recently, I read an article discussing the legalization of euthanasia for 12-year olds in Belgium. (BioEdge, Should 12 year old kids be allowed to choose euthanasia?) The article claims that the ‘privilege’ of euthanasia was already being bestowed upon some minors. ‘It happens so regularly that doctors need a legal framework for carrying out their job.’ Wow. Ok, so, if an illegal action is a somewhat regular occurrence, then we should make it legal. Just so that it’s not illegal anymore. That certainly bothers me. And as many of us probably heard, John Key said basically the same thing on Newstalk ZB last year – ”I think there’s a lot of euthanasia that effectively happens in our hospitals.” Director of the Association of Salaried Medical Specialists, Ian Powell, disagreed (emphasis added) -
“The situation is much more complex than that . . . Sometimes continuing a treatment can prolong the agony for a patient, and not even keep the patient alive. By not prolonging the agony . . . even though the intent is not for the patient to die, it is sometimes a consequence.”
The proposed euthanasia bill as it stands in New Zealand currently advocates the right to die of a person who is suffering from a terminal illness likely to cause death within 12 months, or from an irreversible physical or mental condition that, in the opinion of the patient, makes life unbearable. However, the bill also states that the person involved must not be coerced into the decision, and must be mentally competent.
Whilst the ethical topic is too in-depth for discussion in this article, I want to address the thought that, perhaps, things will go further …
Alright, let’s examine what the situation is in other parts of the world where euthanasia is already legal. And does it have a connection to ‘after-birth abortion’?
There have been quite a few cases of passive euthanasia for newborns with mental disabilities. The most famous could be the ‘Baby Doe’ case, an incident which occurred in Indiana in 1982. The child was born with Down Syndrome, and an esophageal defect – any orally received sustenances would not reach his stomach. Surgery would have remedied the disorder but the parents and doctor chose not to operate. Instead, he received painkillers and starved to death over the period of a few days. Such discrimination would certainly not be common for a child with no mental disability. Soon after, the Reagan administration drafted the ”Baby Doe guidelines,” which demanded life-sustaining care for handicapped newborns. But soon after, this was opposed by the American Medical Association and eventually struck down by the Supreme Court.
In The Netherlands, euthanasia is so common, and so threatening that thousands of Dutch people carry ‘Anti Euthanasia Passports’ or ‘Declarations of Life’, because they are afraid of being euthanized. The ‘Declaration of Life’ card says:
“I request that no medical treatment be withheld on the grounds that the future quality of my life will be diminished, because I believe that this is not something that human beings can judge. I request that under no circumstances a life-ending treatment be administered because I am of the opinion that people do not have the right to end life.”
Families often convince their elderly relatives that they are a burden and pressure them into being euthanized. Or the elderly will feel guilty about being a burden on their families, and thus opt for death. In the Journal of Medical Ethics 1999 by Jochemsen & Keown, studies have shown that in 1995, 900 patients, or 1 in 5, had their lives ended without a specific request. Treatments (not to be confused with palliative care) were available for 17% of these patients.
Over the other side of the world, in Oregon, a recent study from the 2008 Summary of Oregon’s Death with Dignity Act released on 3 March 2009 states:
‘while 95% of patients requested euthanasia or assisted suicide for “loss of autonomy” and 92% for “loss of dignity” only 5% (3 people) requested it for “inadequate pain control.” It should be noted here that hospice care is not as well developed in Oregon as in other US states, or the UK.’
It is also true that hospice care is extremely slack in The Netherlands, and in other countries that have legalized euthanasia. This shows a lack of care and respect for the elderly, and indeed for those who are sick with treatable illnesses and conditions such as depression. Says philosophy professor Mark Foreman,
“according to a study of the British Medical Association, the state of palliative care and hospice care in Holland is very poor. Where euthanasia is an accepted medical solution to patients’ pain and suffering, there is little incentive to develop programs which provide modern effective pain control for patients.”
The Netherlands also permits euthanasia (or, a more apt term, ‘assisted suicide’) for those who suffer from depression. Again, disabled newborns (especially those with spina bifidia) are euthanized, simply being regarded as ‘better off dead’. We hear of other cases around the world of families who wished they had had their disabled child aborted, because prenatal screenings didn’t show any fetal abnormalities. (An example that springs to mind is the case of the Oregon Down Syndrome girl, whose parents were awarded $2.9 million after their child was non-diagnosed before birth.) This certainly makes me uneasy. I don’t want a law in New Zealand which will encourage the elderly and ill to feel like a burden. I don’t want parents to have the power to decide their child is too much of a hassle to keep. I don’t want doctors to decide whether their patient should live or die. Let us keep in mind the words of Pete Du Pont,
“From the Soviet gulag to the Nazi concentration camps and the killing fields of Cambodia, history teaches that granting the state legal authority to kill innocent individuals has dreadful consequences.”
This week a Parliamentary Inquiry into abortion on the grounds of disability was launched in the UK. This is a major opportunity for social justice for our community. We applaud Fiona Bruce MP, the Inquiry Chair, for this most welcome and important initiative to stop discrimination against the disabled community.
Ann Furedi, the chief executive of the British Pregnancy Advisory Service was quick out of the block to criticise the inquiry, labelling disability “tragic” whilst endorsing disability selective abortion up until birth and revealing her discriminatory attitude towards the disabled. This open letter is our response to her article.
Dear Ann Furedi,
In your article in The Telegraph, dated 31 January 2013, you go out of your way to criticise an important initiative from your government to promote the rights of the disabled. You take the opportunity to label a disability “tragic” whilst endorsing disability selective abortion up until birth and display a discriminatory attitude towards our community.
Saving Downs welcomes the UK Parliamentary Inquiry into abortion on the grounds of disability as an important social justice initiative for our community. Down syndrome is targeted for birth prevention in the UK under a national screening programme. Birth data from the UK shows that the national screening programme is mostly being used for the birth prevention of babies with Down syndrome, rather than birth preparation or life affirming care. The high termination rate for Down syndrome is a concern and is indicative of an underlying attitude of negative bias from the medical community and discrimination.
In your article you stated:
“We will all have different views on abortion for fetal abnormality. They are the most controversial of abortions and arguably the most tragic for often they involve wanted, planned-for pregnancies.”
Please understand Ann, that a disability is not tragic. Disabled people are not tragic; they are our fellow human beings. Like all, they have inherent dignity and value – just like you and me. They are not defined by their difference, but by their humanity.
Your attitude devalues the lives of all people with disabilities and indeed all human life, as none of us are perfect.
You rightly point out that parents who face an unexpected prenatal diagnosis have planned and wanted pregnancies. Well, the value and inherent dignity of that wanted child does not suddenly change on a basis of a genetic difference or disability.
The humane and compassionate response to parents in these situations is to provide life affirming support through to the birth of their child. That is why they are in the care of midwives: to provide nurturance and loving care for the births of their children. Taking wanted and planned pregnancies and then selecting those that get born because of their potential level of ability points to an ablest view of the world. Selecting who gets born based on their biological or genetic difference, such as is the case for Down syndrome and Spina Bifida for example, is eugenics. Do you support selective abortion for other biological differences such as sex, sexual orientation, race and ethnicity, or is it just for potential ability? Eugenics has no place in a civilised society Ann; it devalues those most worthy of our support.
You go on to state:
“But we can trust women to make decisions that are right and responsible.”
Now you are confusing issues. The inquiry is about abortion on the grounds of disability and whether this is discrimination. It is not about women’s abilities to make decisions. Any negative distinction in law on the basis of a disability is discrimination. The current abortion law in the UK and other countries such as New Zealand and Australia makes an exception for abortion solely on the basis of a disability. That is based on a view that the life of a disabled person is of less worth and therefore they have less legal protection under the law than their fellow human beings. That is discrimination, and it devalues the lives of all people living with a disability and their families.
You then go on to state:
“And we can trust doctors to act in ‘good faith’.”
OK, so now we see a disconnection with reality, or an attempt to brush over the obvious. There is a widespread understanding in the disability community that many doctors encourage women to take the lives of their unborn child on the basis of a diagnosis of a disability. It is not an issue confined to the UK, it happens in many countries including New Zealand. Every blog site that advocates on this issue has countless testimonies from mothers who have not been supported by their doctors when facing an unexpected diagnosis. The international birth data confirms this attitude of discrimination from the medical community.None of this is not say that many doctors provide life affirming support in these situations, as they should, and we are certainly most thankful for that. But, the negative bias towards terminations and discriminatory attitudes has to stop.
Given that you are the chief executive of the British Pregnancy Advisory Service, it seems incredible that you are not aware of the practice of your own profession.
You conclude with:
“The last thing doctors, or their patients, need is the scrutiny of an inquiry concerned, not with the care of women – but with the presumed political impact of people’s personal decisions.”
Now you are trying to push a different agenda.
This inquiry is exactly what the disability community needs: the removal of discriminatory laws against the disabled.
This inquiry is also exactly want parents facing an unexpected diagnosis need: a positive step towards a new life affirming environment where their children will be welcomed and supported with loving care and acceptance.
The time has come for the full recognition of human rights for the disabled and this inquiry is a welcome step in that direction.
Cross-posted from Mike Sullivan, spokesperson for Saving Downs, a group that advocates for people with Down Syndrome.
There has been a bit of discussion going on around the place about screening for Down Syndrome having a therapeutic benefit. So what is the situation here in New Zealand? This post cross posted from the new Saving Downs website provides some excellent points and is well worth a read.
Firstly, Saving Downs position is outlined in our Mission Statement:
To ensure that antenatal screening exists only to provide unborn children with Down Syndrome and their parents with life-affirming, unbiased care through education, support and understanding.
This is because we are advocates for people with Down Syndrome. Our view is that antenatal health care should be just that – supporting those wanted pregnancies through health care. We don’t recognise a role for screening to be used to prevent the births of children with the extra love chromosome, that is selection and eugenics.
Earlier this year Saving Downs made a submission to the National Screening Unit on the draft guidelines for health practitioners for antenatal screening for Down syndrome and other conditions. We made our position clear:
Saving Downs acknowledges that people with Down syndrome have an inalienable right to life from the moment of their conception until natural death, a right to be free from discrimination, and a right to be treated on an equal basis with all.
Saving Downs supports the use of screening only to promote safe birth outcomes for those who wish to have access to screening for this purpose.
Saving Downs opposes any form of antenatal screening and diagnostic testing that targets, and prevents, the birth of unborn children with Down syndrome, or causes harm to any unborn child.
So, where does therapeutic benefit fit in to all of this? From our submission:
In medical considerations, a proposed theoretical scenario of benefit or ‘beneficence’ would need to be statistically more likely to provide therapeutic gain than the stipulated Royal Australian and New Zealand College of Obstetricians and Gynecologists (RANZCOG) foetal mortality rate. The benefit or gain it proposes would also need to be proportional to the significance of the hazard imposed on the tested individual, i.e. death. If these criteria are not fulfilled, then the test is non-therapeutic.
Invasive prenatal diagnosis carries a RANZCOG stipulated additional foetal mortality rate of up to 3% for CVS and up to 1% for amniocentesis (both in addition to the normal miscarriage rate), and with increased foetal mortality rates in trainee hands. This risk to the foetus is considered disproportional to the comfort of foreknowledge, and disproportional to the known facts that conditions whose managed survival outcome is deemed dependent on invasive testing are rarer than the testing death rate.
The difference between therapeutic and non-therapeutic testing is an important explanation to give to parents. We submit that pregnant women and their partners must be advised that the screening pathway is non-therapeutic and that must be made very clear in the outset for facilitating informed consent.
We submit that pregnant women and their partners must be advised that participation in the screening pathway imposes more harm than benefit to their unborn child, through miscarriage and morbidity due to diagnostic testing.
That’s all a bit technical. It simple terms it means that if one enters the diagnostic (invasive test) part of the screening pathway, then on balance the unborn child will exposed to more harm than good. So, we believe that parents who want the information to be prepared need to understand this risk before they enter the screening pathway.
There are other risks to, miscarriage rates have been assessed as being 6 to 8 times higher than average in trainee hands. And what about other harm to the unborn child other than miscarriage from the diagnostic test, that we never hear about? Again, from our submission:
Apart from foetal testing mortality rates there are foetal morbidity rates which the mother needs to consider before consenting to the screening pathway. Limb deformities, lung problems, infection and other consequences of slow ongoing amniotic fluid leaks have been well documented. This morbidity and other complications are not mentioned anywhere in the draft health practitioners document.
We submit that pregnant women and their partners must be advised of the mortality and morbidity rates associated with each test and the additional risks associated with trainee practitioners.
Wrapping all that up in our submission to the National Screening Unit we said:
The difference between therapeutic testing and non-therapeutic testing is one which will need to be made very clear in the outset, again for reasons of informed consent.
Screening cannot itself diagnose or identify. It can only point one in twenty mothers, those 5% of the whole New Zealand population who will screen at increased risk, to invasively test or not. Invasive prenatal diagnosis carries a RANZCOG stipulated additional foetal mortality rate of up to 3% for CVS and up to 1% for amniocentesis (both in addition to the normal miscarriage rate) with increased foetal mortality rates in trainee hands. This risk to the foetus will be considered disproportional to the comfort of foreknowledge, and disproportional to the known facts that conditions whose managed survival outcome is deemed dependent on invasive testing are rarer than the testing death rate.
Any scenario postulated of benefit, to be genuine, should be investigated with an invasive test done as late as feasible in the pregnancy, to avoid foetal death, and risk only foetal prematurity.
The difference between therapeutic and non-therapeutic testing is an important explanation to give to parents.
We submit that all misleading assertions overstating what screening can actually achieve be corrected.
We submit that pregnant women and their partners must be advised that the screening pathway is non-therapeutic and that must be made very clear in the outset for facilitating informed consent.
To summarise then, there are real risks associated with the invasive testing stage of the screening pathway. We understand that some parents want this information and we want them to be fully aware of these risks before making that decision.
As an advocacy group for people with Down Syndrome we only support screening for life affirming care and support parents who want to use it for that purpose. However, parents should be aware of the potential harm to their children if they enter the invasive testing stage. In medical terms the level of harm across the population exceeds any medical benefit that relies on a diagnosis of Down Syndrome. Essentially it is a programme to screen Down Syndrome out of the New Zealand population.