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.
DO yourself a favour. Stop what you are doing, log on to YouTube and watch a short film called Be My Brother.
Starring Gerard O’Dwyer and created by 20-year-old Genevieve Clay, Be My Brother took out the award for best film at the 2009 Tropfest. Gerard was named best actor.
Gerard is a young man with Down syndrome who takes prejudice by the throat through humour and charm.
He disarms people. The last few seconds of the film are a celebration of unadulterated affection and acceptance.
Now meet Melissa Riggio.
In a National Geographic piece entitled ”I have Down syndrome: Know me before you judge me,” Melissa wrote: “When my mum first told me I had Down syndrome, I worried that people might think I wasn’t as smart as they were, or that I talked or looked different”.
”But having Down syndrome is what makes me ‘me’. And I’m proud of who I am.”
But Melissa knows about prejudice.
She says: “I still have to remind myself all the time that it really is OK to just be myself.
“Sometimes all I see – all I think other people see – is the outside of me, not the inside.
”And I really want people to go in there and see what I’m all about.”
Melissa challenges us: “I can’t change that I have Down syndrome, but one thing I would change is how people think of me.
”I’d tell them: Judge me as a whole person, not just the person you see.
“Treat me with respect, and accept me for who I am. Most important, just be my friend.”
But there are some who think Gerard and Melissa shouldn’t be here at all.
In the British Journal of Medical Ethics recently, Melbourne academics Alberto Giubilini and Francesca Minerva argued for “after-birth abortion”, a euphemism for the killing of newborns.
The killing of infants is legitimate, they wrote, “if a disease has not been detected during the pregnancy, if something went wrong during the delivery, or if economical, social or psychological circumstances change such that taking care of the offspring becomes an unbearable burden”.
Babies with disabilities are obvious first targets of such arguments.
In my book Defiant Birth: Women who Resist Medical Eugenics (Spinifex Press, 2009), I argued we live in a society intolerant of those judged imperfect.
The contributors spoke of how they faced disapproval for having babies with disabilities. But they refused to go along with social prejudice.
The academics’ views, in a prestigious journal providing ethical education to the medical profession, make it harder for those women and for their children.
They fuel the idea that it is a woman’s duty not to “burden” society with their child.
It’s already hard for families with disabled children to find proper help and care in a society backing away from collective responsibility for those who are vulnerable, questioning sharing the costs of healthcare services with those with special needs.
Many more children become disabled at or after birth than those who had a disability before birth. Will utilitarian academics argue they should be done away with as well?
Jay Jeffries is a Melbourne mother of two boys, including Tuscan, aged almost 4.
She told me that when she saw Down syndrome especially cited as a reason for infanticide, “suddenly I felt a very deep sickening feeling. I wanted to vomit. That’s my boy you’re talking about, that’s my toddler you’d be killing off”.
“When my son was born they placed him on my chest, his eyes were wide open.
”He made a little cry and I kissed him over and over and played with his fingers. My husband wept tears of joy,” Jeffries said.
“We knew from 15 weeks that he had Down syndrome. We knew he had a heart condition and would need surgery in the first three months of life, yet still we wept tears of joy.
”He had survived. He was our little fighter!
“We didn’t see his disability, we just saw the red mop of hair, the little fingers and his innocent eyes.
“When I think that someone in that moment might have suggested killing him, I feel rage! I wanted to protect him from all the bad things in this world. These are a mother’s natural instincts.
”What would become of a society that squished these desires, and moved straight to a cold analytical assessment of the child?”
I wonder if the real disability is not with the child but instead with society’s inability to see its intolerance of imperfection.
Julia Anderson, wife of former deputy prime minister John Anderson, wrote in Defiant Birth of what she learned from their son Andrew, who had Down syndrome and died at six months: “To see that we are all imperfect, just in different ways.”
I’d rather a world with Gerard and Melissa and Andrew and Tuscan in it than a world of powerful people who deny their right to be here.
As published in the Sunday Herald Sun, April 22, 2012
I was just about to post this blog when I got news through twitter that the on-line seller of vintage and handmade products Esty had changed its policy and was prohibiting items and listings that disparage or promote hate. However, as the rape cards and other offensive cards remain on its site at the time of writing, and as it appears sellers are being asked to voluntarily withdraw, I am publishing the blog as is in the hope it might contribute to speedy removal. Also, it could easily be argued that the cards already violated Etsy’s Terms of Selling. And regardless, we still need to confront the reality of a rape-trivialising culture, of which this card is just one manifestation.
I’m barely keeping up with the litany of women-punishing products, music, images and messages flooding the world at the moment. It’s overwhelming.
Take this for example.
On-line seller Etsy is advertising a greeting card for women who have been raped. It contains a drawing of a naked woman cowering in the shower with the wording “Congratulations: You got bad touched!” This card and other çards ‘for awkward situations’ are created by Jason Jones whose selling name is “YouStupidBitch”.
Change.org has a petition calling on Etsy to remove this card along with others including one mocking mothers of children with Down syndrome, another congratulating women with breast cancer.
As of this afternoon, there were 16,521 signatures.
Trivialising sexual assault
For the past couple of weeks I have been tweeting Change.org’s petition, encouraging people to sign. (Thanks to all who did).
One woman on twitter criticised me doing so. She said that while the cards were “in poor taste”, she would never “dictate what other find amusing”.
Dictate what others find amusing…I didn’t say this in response, but I’ve been thinking about how anti-semites find images of Jewish people with exaggerated noses amusing. Or how white supremacists may find images of blacks being lynched, entertaining.
Why isn’t mocking women who have been sexually assaulted seen as universally and unequivocally offensive? Why are crimes against women seen as fodder for amusement?
What has happened in our culture that such a sadistic and cruel card could even be created, let alone sold, profited from, justified and defended by others?
Products like this feed into a culture which trivialises rape, makes fun of or blames sexual assault survivors. A culture which tells them to get over it or even that they should be grateful anyone would want to rape them (a comment I’ve heard). A culture which comes up with t.shirts with slogans like “It’s not rape it’s surprise sex” or “It’s not rape if you yell surprise!”
“When a person is sexually assaulted their faith in humanity is fractured. To see other people mock rape and its victims only exacerbates the sense of dislocation” – a survivor
It’s the survivors of rape who we should be listening to in all this. How does a rape greeting card make them feel?
A young sexual assault survivor shared her thoughts with me:
As a survivor, when I hear of rape-positive attitudes it is a reminder that I live in a world where rape is condoned or even promoted. It is a reminder that I am not simply up against one man who tried to rape and kill me, rather I am up against a culture of abuse. It is a reminder that my experience of sexual assault, while highly personal and individual, also has a historical and cultural dimension that reaches back for centuries, and which bleeds into all cultures and communities around the world. That knowledge is hard to deal with as it makes my experience seem irrelevant in the grand scheme of things. It also makes me feel insignificant and it makes future rape of other women including sisters, daughters and friends seem inevitable. In effect the knowledge that rape is still condoned by some makes me feel even more powerless as my own experience is made a mockery of.
One thing I always say is that if these people knew what it was that they were joking about, then they wouldn’t joke about it. I envy anyone who is able to joke about rape as it is a clear indication that they have absolutely no experience of what it is that they are joking about: if they did they would never joke about it. People should not use big words that they don’t understand because they end up looking like idiots. Well, rape is a big word. People who don’t understand it’s meaning- not definition- but meaning, shouldn’t use it, much less joke about it.
As I say, even if I never see or receive such a card, the very knowledge that it exists makes me feel alone and unsupported by the broader community. When a person is sexually assaulted their faith in humanity is fractured. To see other people mock rape and its victims only exacerbates the sense of dislocation from the rest of society and this compounds feelings of isolation and distress.
Demonstrate your solidarity for women like this. Stand up against all rape trivialising jokes, products and messages.
Antoinette Jones – Principal – Mitcham Girls High School
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