Defiance Is in the Eye of the Defied
BY EDWARD PENTIN
June 25-July 1, 2006 Issue | Posted 6/26/06 at 11:00 AM
The book tells the stories of women — 20 of them, from around the world — who brought their pregnancies to term despite powerful pressure from doctors, family members and social expectations, to abort. Subtitled Women Who Resist Medical Eugenics, the book is available in online bookstores and at its publisher’s site, http://www.spinifexpress.com.au.
What made you write this book?
I’m very interested in the untold story, the stories that we don’t hear, the voices that are often silenced. I like to bring those stories out into the open. As with my first book, Giving Sorrow Words: Women’s Stories of Grief After Abortion (Duffy and Snellgrove, 2000), I wanted to give voice to women who thought they didn’t have a voice because abortion is presented as something simple, quick, easy and over with, and they thought there must be something wrong with them for having a completely different experience.
With this book, I suppose there is
an assumption that the worst possible thing that can happen to you is to be
pregnant with a child who has a disability. I had heard a couple of stories
while I was in
I put the idea to a publisher. I had, at that stage, not more than the title — no manuscript at all — and they really liked the idea. Then we decided to make it an international book and collected stories from various countries.
Could you tell us a little more about the stories you researched?
There are two categories in the book. The first involves women who were given a diagnosis of some kind of abnormality in the child and who refused medical and societal pressure to get rid of that child. They were, in a sense, genetic outlaws because they were refusing to ratify social processes through their reproductive decision-making. They were treated as pariahs, maternally irresponsible for bringing “misery” into the world in the form of children who would live second-rate lives. Some women were told they were bringing a monster into the world; other women were told their babies would only be a pet.
But there’s a second category of women in the book as well, and that’s women who had disabilities and were told not to reproduce their kind, not to bring someone else like them into the world. They defied that pressure and had that child.
In your book, you also say the children were sometimes actually born without the expected disabilities.
Yes. It has been quite disturbing to receive so many stories where what was predicted for this child did not come true at all. In many cases, the children were born with none of conditions that were predicted for them. Or they had lesser conditions, often treatable conditions. So it’s just alarming to me that women are making these grave decisions on the basis of faulty information. It’s just a lottery. Women are making decisions based on what amounts to guesses and probabilities.
And based on fear?
Fear as well, fear fuelling those guesses and probabilities and women feeling panicked and pressured with doctors saying to the woman: “Well, you have to decide right now because if you wait any longer it will be too late for you to terminate. It will be more dangerous, it will be more of an ordeal.” In some cases I’ve collected stories of women who were pressured to terminate even before the tests results were in. They had the baby terminated and, when the results came back, there was nothing wrong. And these women are in just a terrible psychological place.
Some might say that one shouldn’t seek out suffering, that to try to have a child, knowing that he or she is likely to have a disability, is not a sensible or responsible thing to do. What do you say in response to that view?
This book isn’t saying suffering is wonderful, let’s bring it on, let’s have more babies with disabilities. That isn’t what this book is about. This book is asking: What kind of society are we creating when we say there are good babies and there are bad babies; there are biologically superior babies and biologically inferior babies and we should all quest for the best baby, the blue-ribbon baby? What does it mean to people who have babies who aren’t perfect, whatever that means?
The fact is that most disability occurs after birth. So what are we saying to anyone with a disability?
What I’m trying to say in this book is that it’s about respect for the dignity of all individuals, and I’m really concerned at the direction [our society] is taking. I think we are seeing an erosion of empathy for difference, for the non-normative, and we’re not learning how to care for children with abnormalities because we’re not seeing them as often. We’re getting rid of them, and so we’re eroding that sense of care and compassion.
What do you hope to achieve with this book?
I hope the book will be read by women who may pregnant now or may become pregnant, who find themselves in the same dilemma [as the women in the book] and realize that the instant answer isn’t always the best answer. The assumed response isn’t always the best one. I hope the book will give them strength to answer more questions, questions about prenatal tests — what they are for why do they need to have them.
We’re seeing a situation now where amniocentesis used to be given to women who were 40 or older. A friend of mine, when she was pregnant with her third child, was told: “You should really have an amniocentesis as you are, after all, 27 years old.” So these technologies that were once for certain women are now across the board and we’re all expected to have all of them.
So I hope Defiant Birth will especially empower women. I also hope that it will send a message that people with disabilities have, and deserve to have, the resources they need to make a go of life. We’re not doing enough for people in that situation.
Often, after a couple have a child, you will hear people ask them if it is normal and healthy.
Yes, or often you’ll hear parents saying, “We don’t care if we have a boy or a girl as long as it’s healthy.” I’d like to change even that response because the baby may not be healthy and something may even happen to the baby down the track, but you love it anyway. That’s the message I’m trying to convey.
Questioning these entrenched assumptions and questioning what it is to be normal: Who defines that? Conditions that are correctable are now considered worthy of even an abortion. Where does that leave all of us? Who is safe?
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