My Oma was born in a little village near the town of Hadamar. Hadamar sits in the shadow of a tall hill called Mönchberg – Monk’s Mountain. On top of that hill stands an old Franciscan monastery, which was converted into a state hospital and nursing home in 1803. In 1940, however, that hospital was turned into one of the infamous Nazi ‘killing centres’. These were the six institutions spread all over Germany where first children, and later also adults, with disabilities such as (in the language of those times) ‘idiocy and mongolism (especially when associated with blindness and deafness), microcephaly, hydrocephaly, malformations of all kinds, especially of limbs, head, and spinal column, and paralysis, including spastic conditions’ were taken, systematically starved to death or gassed, and cremated.
Oma rarely spoke to us about her experiences during the war. But we know that she was affected by the experience of living in the shadow of Mönchberg. I was the fifth of sixth children. Oma loved us all very dearly, but she had a favorite, and she never made even the feeblest attempt to hide it. The other five of us were all her Silberfische – silverfishes. My older brother, Jim, was her Goldfisch – her goldfish.
Jim was born ‘mentally retarded’. When he was born back in 1952, the medical professionals counselled my parents to send him to live in an institution. My parents refused, and with much work and love, they taught Jim to do all those things that the medical professionals told my parents he would never do, like talk and walk. Jim graduated from high school. He is bilingual – fluent in German as well as English. He reads the newspaper everyday. Jim has held the same full-time position in the kitchen of a country club for twenty years now, and does not receive any sort of public assistance. Jim is known around our family as ‘the human jukebox’, for his uncanny ability to remember the lyrics to any song, from any era, by any artist.
In some sense, although we did not live in the town of Hadamar, I think that all the kids in my family grew up in the shadow of Mönchberg as well. I cannot remember a time when I did not know that the first targets of the Nazi’s gas chambers were people with disabilities. I cannot remember a time when I did not know that my brother Jim would probably not have been allowed to live if he had been born just ten years earlier, in the same hospital in Frankfurt, Germany, where I was later born – a former German military hospital in which my mother noticed, the first time she was there, swastikas carved in the borders along the top of the walls. I grew up with a visceral awareness of the potential within humanity to decide that it is legitimate to kill certain categories of people because of the costs that their life imposes on society. I grew up loving a brother who I knew was in one of the categories of humans that the Nazis had determined possessed a lebens-unwertes Leben – a ‘lifeunworthy of life’ – a life whose cost to society exceeded its worth.
But that was years ago and far away, right? I grew up, moved to the United States for college, went to law school, then plunged into my life as an all-American working mum, practicing law and raising kids in the modern, progressive metropolis of Minneapolis, Minnesota. And then something happened to me, and my life changed, and in so many ways now, on so many days, I feel as though I am still living in the shadow of Mönchberg.
What happened was this. When I was about five months pregnant with my third child, Peter, I got a copy of this (pictured).
This is the karyotype of one of Petey’s cells that was floating in amniotic fluid extracted from my womb by a big needle during an amniocentesis. The arrow in the karyotype points out that Petey’s cells have three, rather than the usual two, copies of chromosome number 21. This indicates that he has an incurable chromosomal condition called trisomy 21, or Down syndrome, or, in the old-fashioned language of the Nazi regime, ‘mongolism’.
The medical professionals I was dealing with during a series of tests were not trying to find information to help me protect the health of my baby. Unlike the tests for anemia or HIV, there is little that can be done about the conditions that these tests were attempting to identify. These tests were offered for the purpose of bestowing upon me a special societal privilege to choose to abort my baby. That karyotype could have been my ticket to a guilt-free, utterly justified, absolutely legal abortion. If the technology had existed in the 1940s, that karyotype would almost certainly have been a ticket to Hadamar.
As someone who has always been pro-life, I did not accept these tests for the purpose of obtaining that ‘privilege’. I just wanted to know, partly in the vain hope that I could be reassured nothing was wrong, but also so that if I could not be reassured, I could at least be prepared. I am a nerd; if I was going to have a baby with Down syndrome, I wanted to read every possible book on the subject before the baby came.
Experiencing this testing sequence first hand, however, gave me some personal insights into the potentially pernicious effects of the prenatal testing process. The tests are all offered in the guise of ‘reassurance’, along with a battery of other tests. All of these tests carry with them the implication that the responsible mother can and should do something constructive with the results: take extra iron if she is found to be anemic; take AZT if she has HIV; or abort the baby if he or she has Down syndrome. If you lack the financial or other resources to raise a child with a disability, you could easily be swayed by an argument that the knowledge you now possess about the child gives you the responsibility to do something constructive to solve the problem, by aborting the child.
Now, this argument could obviously be a powerful incentive for a person to ‘choose’ to have an abortion. Going through this process personally made me acutely aware of its potential power. But this was not the aspect of the experience that really surprised me. What really surprised me was that people did not stop making this argument once I rejected it during the testing phase. When I started telling people that the baby I was expecting would have Down syndrome, I had colleagues ask me incredulously, ‘Why are you having this baby?’ While there was something rather creepy about being asked that question directly – by someone staring at that big belly of mine, while the baby kicked inside – it was still not too difficult for me to deal with. I was comfortable defending my position that I didn’t believe in abortion, that I didn’t think I did have any choice in this matter; I was still in familiar, pro-life territory.
But I left that familiar territory the moment that Petey was born, and I found, to my great surprise, that society still kept asking that question: Why did you have this baby? I have had people react with marked surprise when they hear that I knew Petey would have Down syndrome before he was born. Though they do not ask aloud, you can see the question in their eyes: ‘If you knew, why did you have the baby?’ What’s buried in that question, what’s buried deep in their eyes as they ask it, is the perception of my son as ‘a choice’ – specifically, my choice – rather than as a unique human being, rather than as a fully-fledged member of the human race.
What I see in their eyes is the lingering shadow of Mönchberg that sometimes keeps me awake at night. I worry that the joint availability of tests and abortion seems to be eroding societal consensus about our collective responsibility for vulnerable people – people with disabilities whose conditions were or could have been diagnosed prenatally, or even people born into difficult family situations or social structures. I am very frightened by the emerging attitude that if a woman exercises her ‘choice’ to have a child who can be identified in advance as ‘vulnerable’ for some reason, the woman herself bears the responsibility for dealing with that vulnerability. In other words, if the ‘cost’ of a certain life is going to be more than its ‘worth’, someone has to make up the deficit. The assumption seems to be that if you ‘choose’ to impose that cost on society by having a baby you could so easily have aborted, you should pay the price.
Rosie became pregnant at 17 last year. She was labelled a slut. Melissa, 14, ran away from home so her parents couldn’t force her to have an abortion.
Jackie, 33, had a violent partner who didn’t want their baby. There was no public housing available and refuges were full. She slept in her car.
Kat, 32, was threatened by her boyfriend. She says: ”I decided when I saw my little boy kicking on the screen I was going to keep him. I knew this would make me a single parent – I had been told in no uncertain terms I was on my own unless I ‘toed the line’.”
These are just some of the stories of women I am aware of who decided to have a child in difficult circumstances – even though it meant bearing the label ”single mother”, with all its alienation and stigma.
They wanted their babies. They were determined to be the best mothers they could be. All did it tough. But their love for their child pulled them through. It’s the kind of love you need when you’re being marginalised, told you are a bludger and a leech. Even that you are to blame for the ills of the world.
Senator Cory Bernardi in his book The Conservative Revolution suggests there are higher levels of criminality among boys and promiscuity among girls ”who are brought up in single-parent families, more often than not headed by a single mother”. Read more here
’I just wish that people had more of an open dialogue about what pregnancy really means to you as a woman’
Dear Senator Bernardi,
There has been a lot of talk in the media about your recent comments about abortions. I thought I would share my story with you.
Being in a toxic relationship and discovering you are pregnant is one of the most intense pressure cooker situations a woman can be in. My pregnancy was unplanned – I was taking the pill YAZ and it failed. I am university educated, 32 years old, middle income earner, lived in the eastern suburbs of Sydney, my parents are still married and I have a harmonious family life.
When the two pink lines appeared I was told in no uncertain terms I would be having an abortion- and I was to understand my partner was only looking after himself and I’d “better not try to screw him over”, I was then kicked out of the house in the rain and had to walk home.
He then disappeared into nights of drinking with his best friend under the banner that his best friend needed “support” while his pregnant girlfriend sat on the couch at her house freaking out- oh of course I got the 11pm “ How are you? You will be getting an abortion its nothing, it’s just a process stop looking for attention” message. Great father material wouldn’t you say?
It was a terrifying future would my measly salary cover the cost of a child? Would I be able to maintain my apartment? I’ve never been inside a centrelink office in my life I wouldn’t have a clue where to begin. Would I be able to cope with the stigma narrow minded people – such as you- place on single mothers? It was clear this would be my only option. Would I be able to form another relationship? How would I go about getting external help?
And was it indeed my fault? My ex certainly seemed to think so. Did I make this happen? Should I have done something differently?
If I had an abortion how would I cope? Was I going to be ok? It was more than obvious my sham of a hetero sexual relationship was completely loveless – was it right to bring a child into the world with no father? It may well be my right to choose – how was I to make this life defining choice? Could I cope with the very real very scary physical and psychological side effects of a termination? All the literature told me it was no big deal- but it felt like a big deal and the consequences were enormous.
All this and my hormones were out of control.
You know who supported me? My gay best friend. He was on call with listening to me agonize over what to do, running through all the options offering total unconditional love- as were my parents.
I had my scan – my “partner” refused to attend, my mother held my hand -I decided to keep my son. I take no moral high ground here I made the choice that I felt was right for me.
The terror remained and it was only going to get worse. I lost my son in extremely traumatic circumstances.
Oh the guy? Ran away but not before he abused me one last time advising I was disgusting and deserved what happened to me. But nothing is more sacred than the love between a man and a woman right?
Here’s the true tragedy- my story is not uncommon.
Your remarks show you can’t possibly comprehend what a woman is thinking when there is an ambiguous pregnancy, nor does it offer empathy to my hetero sexual abusive relationship situation.
When I was a little girl I didn’t say “when I grow up I want to have an unplanned child to an abusive manipulative man and terminate it because I feel trapped by the stigma of society, the belief and social assurances that I can’t do it on my own.”
To trivialise abortion as used for “birth control” undermines the difficulty of the decision. I have spent a lot of time with women who have had abortions all, not one or two but all, found it to be an agonizing decision. Your statement shows you haven’t researched correctly and lacks empathy.
I wouldn’t change decision to keep my baby, it was the right one for me. Do I wish things had been different? Absolutely – the loss of my son has been the hardest, most cruel and shocking experience of my life. I actually didn’t know pain like this existed. Even now the shock of it all still affects me, especially coming up to one year since he grew his angel wings.
I just wish that people had more of an open dialogue about what pregnancy really means to you as a woman- and extended empathy rather than sitting in judgement.
Pro life, Pro choice, I’m actually Pro woman.
‘ When I was pregnant at 15 I needed support’
[This to Victorian MP Bernie Finn following a vitriolic debate on one of my Facebook pages which I have been forced to shut down]
Dear Mr Finn,
I am a pro life woman. I believe mothers and babies should be embraced and supported by our community. I believe laws should protect life before and after birth. Please enact the following:
Illegal to pressure girlfriend or wife to have an abortion.
Illegal to harass pregnant mother to the point of physical and mental health breakdown, with stronger penalties applied. (FYI, Maternal stress is linked with future health problems in the unborn child as well as the mother).
Stronger restraining order laws. I was afraid to apply for child support and wrote “father unknown” on the birth certificate to avoid being compelled to do this.
Illegal for mentally ill, depraved and criminal father to come back into child’s life 12 years later, using Legal Aid and the family court (successfully) to harass and intimidate mother, to undermine child’s education, to harass and threaten teachers, to cause depression/anxiety/trauma for mother, to escalate and encourage child to rebel against mother and society, cause mental health issues in child, resulting in psychiatrist paid for by mother. All of this allowed by the court with no penalties.
Illegal to lie to the child support agency about paternity.
Illegal for father to pose as a teenage girl to stalk child on facebook and actively encourage him to defy his mother with this fake female personality.
Illegal for father to then claim child support off mother after successfully encouraging child to run away from home and live with him, even though she was afraid to claim child support for 12 years.
Illegal for father to give child weapons.
Illegal for father to give child drugs, alcohol and pornography.
I could go on and on sadly. The legal correspondence goes on for miles. I became used to my lawyer advising me that the court would do nothing about his behaviour, despite his violent criminal history, prison sentence, numerous stays in mental institutions and his then current mental health forensic order. I visited the police station almost weekly with new information and became used to them literally shrugging their shoulders at me.
I don’t share my story often because I’m afraid it will make girls afraid to have their babies. Who would want to be forever tied to an abuser in this way? When I was 15 and pregnant, the legality of abortion didn’t enter my mind, I had never thought about it. But I did need the law to protect me and my child from the child’s father. Existing laws were and still are, woefully inadequate.
When I was 15 and pregnant, what I needed was genuine support, someone to walk alongside me, a true friend, a mentor. We need to funnel more resources into organisations who provide this support in order to help more women and girls.
I see that women’s stories of unexpected pregnancy have changed very little in the almost two decades since I had a baby. Please change the laws so that no woman or girl – or their child – has to endure what I have endured.
Recent publicity for abortion drug RU486 has given women assurances of its safety. The drug is promoted as do-it-yourself, easy, private and ”more natural”. In this pro-RU486 spin, the voices of women harmed by the chemical cocktail have been drowned out.
”Rose”, 27, from South Australia, shares her experience in the new preface of RU-486: Misconceptions, Myths and Morals by Renate Klein, Janice Raymond and Lynette Dumble. She was told it would be easy and quick. ”The worst part … was the sheer amount of time it took for me to ‘terminate’ my baby: every large clot of blood – which I could literally feel passing through my insides … was a reminder of the fact I was terminating a baby, for which I felt hugely saddened.
”It was three days of nausea, high temperature, sweating, cramping, lots of blood, distress and swirling emotions. I would never ever go through that again.” Rose bled for another three weeks.
An unnamed 25-year-old American woman described her experience after taking RU486 at six weeks. ”I was in excruciating physical pain for at least 12 hours straight and I was bleeding through my pants, but I was in so much pain I couldn’t even clean myself,” she says. ”I vomited continuously … I couldn’t speak, eat, drink, sit up, and had difficulty breathing … I thought I was going to die …
”I was told I would have emotional instability for a few weeks because of the hormonal chemical imbalance that the drug causes. I have experienced severe emotional fluctuation ever since … I would never have taken this had I been properly informed.”
Norine Dworkin-McDaniel’s story ”I was betrayed by a pill” was published in Marie Claire in 2007. ”Nothing prepared me for the searing, gripping, squeezing pain that ripped through my belly … For 90 minutes I was disoriented, nauseated, and, between crushing waves of contractions … racing from the bed to the bathroom with diarrhoea,” she wrote.
”The next night, I started bleeding. I bled for 14 days. A follow-up ultrasound confirmed I’d aborted.” She developed ”huge cystic boils that soon covered my neck, shoulders, and back” and suffered ”an utter lack of ability to do anything more strenuous than sleep or lie on the couch”.
Since the death of his 18-year-old daughter Holly in 2003 from an infection after an RU486 abortion, Monty Patterson has lobbied the US Congress to pass ”Holly’s Law”, calling for the suspension and review of the drug.
In Australia, the Pharmaceutical Benefits Advisory Committee has agreed to a request from Marie Stopes Health, a subsidiary of Marie Stopes International, to list Mifepristone Linepharma (RU486) and the misoprostol GyMiso on the Pharmaceutical Benefits Scheme for termination up to 49 days gestation. From August 1, both drugs are available on the PBS.
Marie Stopes’ record in following up women who have been prescribed the abortion drug is questionable. On March 19, 2012, it was reported that a woman had died sometime in 2010 at a Marie Stopes clinic. In a study by Marie Stopes’ staffers published in the Medical Journal of Australia (September 2012), this death was callously attributed to the woman’s own negligence because she didn’t ”seek medical advice” and died of sepsis.
Where was the follow-up by Marie Stopes? There was no coronial inquiry.
In May 2012, the Therapeutic Goods Administration told a Senate committee it didn’t collect information on RU486-related deaths of women overseas. Perhaps it doesn’t think it important enough? As at April 30, 2011, the US Food and Drug Administration had held detailed reports on 14 US deaths and five deaths elsewhere, with two further deaths reported since then.
Noting that only one in 10 adverse events is reported, the FDA has recorded 2207 adverse events, including 612 hospitalisations, 58 ectopic pregnancies, 339 women who experienced blood loss requiring transfusions and 256 infections, 48 of which were ”severe”.
Here, the TGA has been informed of 132 cases of ongoing pregnancy requiring surgical abortion, 23 cases of haemorrhage requiring blood transfusion and 599 cases of incomplete abortion requiring surgery. This means about 1 in 30 women will need a second termination procedure. Other negative outcomes include cervical tearing and uterine perforation.
A South Australian study found women undergoing ”medical” abortion had more symptoms, reported higher pain scores and had higher rates of emergency admissions. After discharge they had more nausea and diarrhoea. According to an earlier British study, women who saw the foetus were most susceptible to psychological distress, including nightmares, flashbacks, and unwanted thoughts related to the procedure.
While Health Minister Tanya Plibersek says that the drug will be an advantage for women in remote and under-resourced areas, the lack of nearby emergency facilities is a reason not to use it, medical bodies say. Regardless of one’s views on abortion, pushing this drug combo as simple is disrespectful of a woman’s right to know what she might face.
Antoinette Jones – Principal – Mitcham Girls High School
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Defiant Birth challenges widespread medical, and often social aversion to less than perfect pregnancies or genetically different babies. It also features women with disabilities who were discouraged from becoming pregnant at all.