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.
Posted on Daily Life Aug 29 2014
Elizabeth Schiltz is an Associate Professor of Law at the University of St. Thomas School of Law in Minneapolis, Minnesota, USA.
Edited extract from Defiant Birth: Women Who Resist Medical Eugenics, published by Spinifex Press. Purchase
9 Responses
Thank you Melinda for sharing that arresting story, which carries a reminder that eugenics will keep rearing is ugly head under different names.
Richard Dawkins of course vehemently denied that his comment that giving birth to a child with Down syndrome was eugenic by getting technical. he argues that since you can’t eradicate Down syndrome by killing the carriers since it appears randomly in the population, it can’t be called eugenics.
But we know better, don’t we? We know that when the Nazis killed entire classes of people, they knew what they wanted and what modern day eugenicists want; a pure race of people. People who are not ‘useless eaters’ but as Dawkins phrased it, people who contribute.
The mother of three (adopted) boys with Downs Syndrome to me one that her sons sometimes ask her “why do people think we should not be here?” They are old enough to notice the hostility of some individuals, and to wonder why people think their lives are supposedly not worth living. I have also heard the testimony of a woman who, when carrying a baby with a terminal congenital abnormality, had to change her GP and obstetrician to avoid the hostility of her own doctors when she chose to proceed with her pregnancy. Pro-life doctors are accused of attempting to coerce women (despite a paucity of evidence.) It is the medical profession at large and the general public who can coerce, and at times bully vulnerable women and their children. And yet we convince ourselves that we are fundamentally different from those who went before us.
Brilliant! makes me want to read this book too! I do hope your first book will one day be re-published. how do I get a hold of this book in the US? is it available?
When I became pregnant at 40 I was offered an amniocentesis as part of the “normal” prenatal care provided by the medical profession. The difficulty here is that I had previously had children so that I knew this was not “normal”. When I asked the reason I was told that my age suggested that I could have a child with Down Syndrome and knowing this to be the case could then abort this child. This offer shocked and shattered me – that it was being suggested that this baby, welcomed already into our family with love, should come with a tag – be perfect or we don’t want you! The suggestion that I would kill my baby made me ill for some time. I refused the amniocentesis and if my son, now grown to adulthood, had not been physically or mentally perfect, as a family we would have coped with that situation when the time came. And he would have been loved!
The attitude current in our world that if not perfect a baby is not welcome goes against all reason – virtually everything in this world is not without the possibility of being improved. Why should an imperfect body be any different to a painting, a food dish, or a rose?
All have a right to life, and all have something to offer us.
At this time of anxiety for the life of my baby and for its good health I placed my trust in God and this trust was answered.
I am really looking forward to reading this book. I have two siblings with DS and can’t imagine life without them, they are a blessing! When I was pregnant with my first child he was diagnosed with trisomy 18 during the 20 week ultrasound. I was immediately offered termination counselling before I even had a chance to try to understand the diagnosis. After seeking 2nd and 3rd opinions, and deciding that we would not terminate the pregnancy, I established that my baby had been misdiagnosed. I will never forget the nonchalance with which that sonographer told me that my baby was disabled but I would be able to “begin termination counselling immediately”.
Perfect piece, right to the point. I loved how you weaved the historical treatment of people with special needs with the current approach to illustrate how non-progressive the progressive movement can be. I also have found it curious that the progressive movement instills a sense of equality and power in women, but then likes to pick away at a woman’s self esteem and confidence when it suits them.
In my case it took only a direct look into the obstetricians eye and telling him “not a chance” when it came to handling any poor test results. From that point the entire stream of medical professionals that followed knew not to broach the subject with me and treated me with respect (and boy you get to find the pro-life professionals that come out of the woodwork to smile and sound joyful about your impending birth when you are behind closed doors).
If women embraced their strength and courage upon embarking on the road to family expansion, I think some medical professionals might realize that making assumptions about our abilities and our fortitude might become a bit of a mine field for them and they might distance themselves from become agents of the eugenic wave.
This is an amazing and encouraging story and I am so glad you have shared it. I would like to share my story which arrives at the same place but from a completely different perspective — that of a pro-choice atheist.
I am a 41-year-old woman, pregnant at 25 weeks with my first child, a son who has Ds. New this year, there is a fetal-DNA test — a blood draw from the mother –that can be done at just 10 weeks with results back in two more. In other words, definitive diagnosis of Down syndrome at week 12. To your point, it offers an even earlier “opportunity” for parents to choose to abort — at a stage in the pregnancy when many people sadly find it easier to choose the out. Our test came back with proof of the extra chromosome at 21. .
Unlike the vast majority of the wonderful people I’m meeting who have continued their pregnancies after Ds diagnoses, I am not at all religious, and have been pro-choice since I knew what it meant to be. While I have my dark days as we wait for our awesome son to get here, for the most part my husband and I are joyful and honored for the gift to be his parents. When I saw Dawkins’ comments a few months ago, I was of course incensed that he was calling my decision — and the decision of so many wonderful parents I’ve met — immoral. I immediately wanted to dive into his logic, and when I did, based on his extended comments and writing, it was so clear that it is flawed. It was this, more or less:
1 Suffering is bad.
2 The moral choice for life is to reduce suffering.
3 Children who have Ds will suffer more than they will feel joy.
4 Therefore it is immoral to knowingly bring a child into the world who has Ds.
What lousy logic! So, sure, suffering is bad. Universal and common to every living human being in the history of time, mind you, but not preferable. But #2? Really? by that logic, a woman who lives below the poverty line should abort a child. A woman in a war-torn community like Gaza should abort a child. A woman with a history of chronic depression, that may be genetic, should abort her child. What terrible logic that is.
And #3, as I’m sure many of you know, is completely false. It’s rooted in an obvious misunderstanding of human beings who have Ds and the life they lead, to say nothing of the joy they share with the world.
So, with #2 and #3 completely flawed, his conclusion is debunked.
What my husband and I believe is that our son will bring us immense joy, and will have immense joy. Will he suffer? Some? Yes. But that makes him human, and more like the rest of us than unlike the rest of us.
I am thrilled to report to you all that, for the most part, my community and my healthcare team are supportive and non-questioning of my choice. I’m sure I’ll meet my share of unenlightened and rude people in the coming decades. But I feel ready. I’m going into this without question that our son will be a beautiful human with dignity and will be a source of joy.
Your story builds on that hope for me. Thank you so much for sharing it.
I am truly inspired with this story. Thanks for posting it. I have a 3 year old daughter with DS and she is the love of my life. I would love to read this book. I also read the article about Richard Dawkins, and didn’t like the idea to terminate the pregnancy when the mother finds out that she is carrying a baby with DS. I hope that thru this book it may inspire not only moms but all the people. They should be treated equally.
Beautiful! I hope this is read far and near. The parallels of WWII holocaust and abortion was one that was made by St. JPII.
Our son was born ten years ago with Down Syndrome, and I feel that the world is schizophrenic…vast efforts to promote the “stop the R word” or political efforts to promote rights and increase funding for this or that. But the support for prenatal or postnatal efforts in the clinic or hospital, and you are all alone. There are very few experiences, in our area at least, that I have heard of that have included up to date support and encouraging words. Neither has any parent that I am acquainted with regretted their decision give birth to and keep their child. Our children deserve more from our culture; “it takes a village”? Pshaw!