A few years ago Stella Young interviewed me for a TV program on disability, following the release of my book Defiant Birth: Women Who Resist Medical Eugenics. I found her intelligent, articulate, feisty, charming, with a wild sense of humour. We had to keep stopping the interview because she made me laugh so much.
Here’s a powerful and poignant piece she wrote only a month before her passing.
Dying with dignity: let’s focus more on the latter
By Stella Young
And so when people ask me why I am opposed to legalising assisted suicide, this is what I tell them: The medical industrial complex has an inaccurate, but incredibly powerful, view on my life. Disability is often framed, in medical terms, as the ultimate disaster and certainly as a deficit.
Indeed, some of my most profound experiences of ableism have taken place in the context of a hostile hospital environment…
Death is not treatment, even if it’s medically facilitated.
Doctors are not fortune tellers and neither am I. Having lived with disability since birth does not afford me immunity from illness. Of course, when the time comes, I would like a dignified death. But while I’m alive, I also want a medical profession that is just as willing to keep me alive as they are to assist me to die….
Conversations about dying with dignity are important. But we must first ensure we’re all able to live with dignity. Read full article
And this, Stella’s letter to her 80-year-old self
“… Mum and Dad, who never wanted me to be anything other than what I am. Who never expressed a scrap of disappointment that I wasn’t quite what they were told to expect. Who, despite being told not to have any more children because of the risk they’d have my condition, went on to have my two beautiful sisters. I think that’s the thing I love them for the most; that they didn’t see disaster, when those around them could speak of little else.” Read full article
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.
Recently I was part of a field trip visiting World Vision projects in communities in North West Delhi, India. Led by World Vision Australia CEO Tim Costello, it was an amazing time, seeing the real difference World Vision was making in the lives of the vulnerable and marginalised, through infant nutrition programs, improving the lives of children with disabilities, to micro-credit projects, and child rescue and rehabilitation. It was my third visit to India, my first as a World Vision Ambassador. I had so many deeply moving and inspiring experiences.
Vandana and me at World Vision’s centre for disabled children in a North West Delhi community
Among them was meeting a young woman leader, Vandana. At only 23, she is a powerhouse for change in her community, inspiring other young women to stand up for themselves, speaking out about harassment and violence and encouraging them to be politically active. She is respected and has the attention of local leaders and politicians. If she asks them to support her projects, they do. She was recently subjected to ongoing harassment by a man sending offensive messages to her phone. She arranged to meet him. However when he turned up he was greeted not by her but by police, who she had notified. He stopped harassing her after that. This is the kind of bravery that inspires other girls in India – and women and girls everywhere. She is finding her voice and using it (Lesson one in another article which appears below). I interviewed Vandana for International Women’s Day today.
What got you interested in trying to help other girls? Please describe some of your personal experiences that led you to this, for example, being involved in self defence classes.
Its a long story but just to get it short, I have had some bad experience when I was just around 12 years with a neighbour which led me to fight for my own safety. This has led me to understand what other girls go through and therefore I help them. I had learnt self defence to gain confidence and be equipped. This has helped me to be more bold and so I ensured that the other girls in my community also go through self defence classes.
How long have you been volunteering/working at the disability centre? Why do you think this is important?
I have been volunteering at the centre for the last six months. Many of the disabled children are neglected at home and do not go anywhere hence I feel it is important for them to come out of their homes, play with their friends, learn something and feel they are also important.
How have you tried to inspire other young people to be active in their communities and also to apply political pressure? Do you have your family’s support?
I am lucky to have a family that trusts me and supports me. The political system is for us but very often we do not make use of it but from my experience I know we can get a lot of benefits from them so I encourage the young girls to approach the police or any other officer to ensure that justice is given to them. Many parents think it would be shameful to be seen at the police station so they need to understand that we have to fight for our rights and get justice through the system. Now since we have formed youth groups as a group we go the police and local leader to get their support. We have helped many girls and so the moment we enter the police station as a group they cannot send us away and have to help.
What would you like to see India’s political leaders do to improve the situation for women and girls? Do you think there is more of a desire and determination to fight back?
More awareness is needed and also the police should immediately note down complaints and act upon it. Women police should be present at all the police stations and they should be sensitive to our needs. We also need parks in our areas for the girls so that we can also come out of our homes to play and interact with each other. Now are parks have men playing cards and drinking so unsafe for us. Young girls like me are now sensitized and therefore we are not fearful and want to fight back however there are many girls who probably are scared. Therefore it’s very important to get more girls into our youth groups so that we are united.
Vanada and young people with our WV team after a demonstration by the young women of their self-defence skills
What are your hopes for the future?
I want to see a change in our country especially regarding the safety of women and girls. We want to be safe here in our country.
A few other offerings for International Women’s Day
After a meeting of 30,000 suffragettes in 1906, Emmeline Pethick-Lawrence said she had “never met anyone so fearless as were these young girls. I never saw a suffragette, under menace of violence, otherwise than cool and collected.”
• Accept that those haters will include other women
• Fortune favours the brave
• Publicity is power
• Strength through solidarity
• Never give up
• Accept victory – nothing else
There are often arguments today about who should represent feminism, but the suffrage fight suggests we need the whole spectrum: the rabble-rousers, theorists, dogged campaigners, sympathetic politicians, those whose wit draws women to the cause, those whose anger keeps them motivated, and those who quietly, conscientiously chip away at issues that make others give up in despair. We need those who refuse to see any conceivable option but victory. Women like the one who wrote to the Daily Telegraph in 1913. “Sir, Everyone seems to agree upon the necessity of putting a stop to Suffragist outrages; but no one seems certain how to do so. There are two, and only two, ways in which this can be done. Both will be effectual. 1. Kill every woman in the United Kingdom. 2. Give women the vote. Yours truly, Bertha Brewster.”
Their rebellion will go on…
Listen to Emily Blunt reading Emmeline Pankhurst’s electrifying speech from 14 July 1913: ‘Kill Me Or Give Me My Freedom’ at The People Speak event, London, September 2012.
And this personal communication from my friend, colleague and co-editor (Big Porn Inc: Exposing the harms of the global pornography industry, Spinifex Press) Abigail Bray:
The other day i was thinking about how the suffragettes were so militant, even though they mostly dressed like ‘ladies’, damaged public property, annoyed the aristocracy, died sometimes, when on hunger strikes and recognised that they were involved in a civil war against the patriarchal state, how this recognition has been largely lost.
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.
Last week I exposed the fact that Woolworths was in bed with Lynx in a promotion based on female servitude and sexual objectification.
Today Woolworths has announced they’ve broken up.
Here’s a letter the grocery corporation sent Collective Shout supporter Jade today:
“Thank you for your email to Woolworths concerning the recent Lynx Lodge marketing campaign. A number of customers have contacted us and expressed their concern about Woolworths’ involvement in this promotion which was primarily focused on an associated competition to win dirt bikes.
We have reviewed this activity and agree that the nature of the overall Lynx Lodge promotion is not in keeping with Woolworths’ values as a company. As a result we have spoken to the manufacturer and taken steps to remove the association between the Woolworths brand and the Lynx Lodge promotion. We sincerely apologise for any offence caused.
We are pleased Woolworths has responded to community concern including from customers and shareholders. We also hope they won’t make the same mistake again.
But Lynx Still Stynx
Woolies might have done the right thing. But Lynx still stinks. That’s why we’ve launched our new Lynx advertising parody on You Tube today. Please watch it and share!
Unilever Stynx Too
Parent-company Unilever continues to justify its anti-women behaviour with patronising and condescending cut-and-paste responses to the many who have complained.
Kath at Fat Heffalump has had enough of the P.R spin. She takes apart Unilever’s response here.
Well, well, well. I got a response from Unilever regarding my complaint to them about their Lynx Lodge campaign. Brace yourselves for some of the worst correspondence to a customer complaint that you are likely to see: Read the entire post here.
Unilever’s new product to ‘wash away the skank’
Ms Magazine exposes a new Axe body wash called Snake Peel, to ‘wash away the skank’. Lynx is the equivalent of Axe, which is the US brand name.
“I noticed a website address scribbled on the body of the man in the third storyboard. So I visited www.thefixers.com and found The Fixer Show, a faux-talk show made by Axe and dedicated, apparently, to advice for men. Each of The Fixer’s five segments corresponds to a new Axe body wash. In the Snake Peel segment, I learned that “questionable hookups” whom you might wish to “scrub away” include: “the geriatric, the bedridden, the lazy eye, the girl that has way more muscles than you, which is sexy only until she has you pinned down and she’s asking you to call her Frank …” And more! For three minutes! Thanks, Axe. You sure know how to make a girl feel special”.
That’s right, a man can use this Axe body wash to rid himself of any traces of sex with women who are sick and disabled (and skanks as well, apparently). Because who could possibly find these women attractive? They must be erased from the body and mind. I’d like to know what disability rights groups think of Unilever’s degrading and demoralising depictions.
Collective Shout has had three wins in less than a week. It shows what’s possible when individuals speak out. If you haven’t done so already, please join Collective Shout and we will see even greater things. Also find us on Facebook.
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.