Defiant Birth: Women Who Resist Medical Eugenics
By Melinda Tankard Reist
338 pages | Spinifex (Melbourne) | ISBN 1-876756-59-4 | AU$27.95 | 2006
One of the great social changes in the West during the past few decades has been the appearance of people with disabilities in the mainstream of life. Where once a child with an intellectual handicap or a misshapen body would be secluded in an institution, or at least, as time went on, educated in separate facilities, today he or she is likely to live at home with community support and, as far as possible, go to an ordinary school. Most, if not all, states have policies for developing an inclusive society and the United Nations is currently negotiating a convention on the rights of disabled people.
Alongside this positive movement, however, there is another trend that completely undercuts it: a systematic effort to prevent the birth of people with disabilities by means of pre-natal diagnosis and abortion. This is the fate, currently, of 80-90 per cent of babies with Down syndrome—a condition that varies greatly from mild to severe. Abortions are routinely carried out for spina bifida, which also varies in severity, and are available where the baby is affected by dwarfism or even correctable conditions such as club foot and cleft palate.
What is going on here? It is not natural for a mother (or father) to contemplate the deliberate destruction of their unborn child, especially since in most cases of disability, the pregnancy has already been welcomed or at least accepted. All they know before the first blood test or scan is that they are pregnant. True, when the doctor tells them their AFP (alpha-fetoprotein) levels are low, indicating trouble, or that the scan shows a malformation, it is a dreadful blow. They may recoil and grieve. It depends to some extent on how they are told. But, as for deciding to kill the child, that must take a lot of persuasion — not to say bullying.
That, anyway, is the conclusion one reaches after reading the stories in Defiant Birth. Here we meet, thanks to the work of Australian writer Melinda Tankard Reist, 19 women from different parts of the world who have resisted the present-day practice of medical eugenics and written their own accounts of it. “These women may be among the last who decide to have babies without the genetic stamp of approval,” warns Tankard Reist. “They are, in a sense, genetic outlaws.”
The mums and dads
For all that, they are mostly ordinary women with the usual range of marital circumstances and occupations. Their health status is diverse: there are women with normal health and women with chronic ailments, including HIV; women with unsuspected genetic flaws and women with obvious disabilities – dwarfism, cerebral palsy and deformities resulting from Thalidomide exposure. Some are more defiant in tone than others, depending on how much bias or opposition they have encountered. Some are more eloquent than others. But all have in common a passionate love for the child they conceived, and wanted, no matter how bad its prognosis – or their own disability.
Teresa Streckfuss and husband Mark had nothing to look forward to in the birth of a child diagnosed with anencephaly (where the top of the spinal column fails to close, resulting in the absence of a major portion of the brain, skull and scalp) but the baby’s imminent death. And they went through this not once but twice.
To many doctors, and the parents they advise, this fatal disorder seems like a textbook case for abortion: It’s pointless to carry a dying child; terminate and try again. The Australian couple were offered this path, but once they had made it clear there was no “choice” to make, they received very sympathetic treatment from medical and nursing staff, with only one exception. Their first anencephalic child lived for only a day, and the second for six days, but these babies spent their brief lives swaddled in the love of their family, were baptized and buried with due solemnity.
For those who still cannot figure out why, Teresa Streckfuss explains: “Some people think we carried Benedict and Charlotte to term because we don’t agree with abortion, because we’re Catholic, or perhaps because our nephew was carried to term after a fatal diagnosis. While these factors probably all played a part in our immediate refusal to ‘terminate’, this is not what it’s all about. It’s about love! It’s about our babies! … Causing them to die earlier will only take from us the beautiful experience of knowing and loving them.”
Sometimes the baby’s condition is worse than anticipated. Julia Anderson, another Australian and wife of a former deputy prime minister, knew in advance their fifth (and unexpected) baby had Down syndrome with a correctable complication. It turned out that Andrew’s condition was much worse and he lived only seven months. Did the parents regret having this child? On the contrary, though they had to watch him suffer, they also saw him smile and learned from him “about real strength”.
More often, it seems, the baby is much healthier than the scans and other tests have indicated. This is the experience of at least six of the women in Defiant Birth. Michigan mother Sandi Seyferth was told her fifth child had lethal skeletal dysplasia – a rare form of dwarfism – and was dutifully offered an abortion. But Grace arrived without this condition and, though small, was thriving at 15 months.
Nirmala Jegathesan of Singapore embarked on motherhood though suffering from lupus. Her second child was autistic. When her third, conceived when she was 40, was diagnosed with a severe form of Down orTurner’s syndrome, she “understood why abortion seemed to be the perfect answer.” But she and her husband accepted the baby and, as it developed, the main indicator of severe handicap – a cystic hygroma, or collection of brain and spinal fluid around the neck – disappeared. Sonia Grace was born with no disability or abnormality, a little excess skin around the back of her neck “the only reminder to us of her heroic struggle with the fatal hygroma.”
The babies — tougher than you think
That remark highlights a strong feature of the book: for all the bravery and defiance of their mothers, it is the babies who are the real stars. The birth plan for Grace Marie Seyferth was no ventilation, because she was destined to die anyway, but the 41b 2oz mite came forth from the womb screaming and astounded everyone with her lung capacity. Later she went into respiratory distress, but then screamed so much during tests that she cleared the mucus from her lungs – and never looked back.
Indiana mother Stephanie Gillespie was expecting a baby boy with severe Down syndrome or dwarfism who might be stillborn. But Chandler was another fighter who arrived screaming – “like a declaration of his achievement, his life,” writes his mother. He had a large soft spot on his head and they feared brain damage. However, at 18 months he had none of the disabilities predicted for him.
Lise Poirier-Groulx’s little boy was born with multiple defects and a poor prognosis. Yet he, too, amazed the doctors with his vigour and came through four major surgeries in the first year of his life, including a total repair of his heart. Despite his need for continuous medical follow-up, Christian has reached the age of six and is going to school.
Babies are tougher than you think, and so are their mums and dads. Obstetricians, geneticists, neonatologists and paediatricians ought to know this – they see enough of them. So why do so many professionals rush in with their doomsday diagnoses and ill-considered advice? We all have our hunches, but Melinda Tankard Reist goes into the question thoroughly in her comprehensive introduction, and it is difficult not to agree with her that the problem lies in a eugenic mentality.
Eugenics – at what cost?
Eugenics, the systematic elimination of the “unfit” from society, was very popular with Western governments last century until the Nazis brought it into disrepute. But the idea has never really gone away and is manifested today not only in the practice of pre-natal “screening” of babes in the womb, but also pre-implantation diagnosis and selection of IVF embryos, and in the broader “quest for perfection and gene salvation”, as Tankard Reist puts it. Her sampling of the growing literature on this trend shows it is not merely the product of anti-abortion paranoia.
If the trend is driven by “mad scientists” (and extremists like Australian bioethicist Peter Singer really do invite that description) with an agenda of their own, it is sold to public health authorities on its financial merits: units of handicap prevented. Says one geneticist, “if you prevent the birth of a child with Down’s syndrome you are probably saving the community a million dollars or more in the life of a child.”
“Prevention,” of course, has a legitimate place in public health programmes when the means used are ethical and in keeping with the equal dignity of all human beings. And equality does not, as the stance taken on disabled women in Defiant Birth suggests, necessarily mean that every decision to procreate is ethically enlightened. If a person knows they have a serious genetic disorder or a disease that can be passed on they could decide not to marry and have children as an act of altruism. This is a difficult area of ethics requiring a more refined perspective than that of feminist disability politics. But it is also an area where personal freedom has to reign and where, once a child is conceived, there is no question of preventing its birth.
If eugenics appeals to the budgeting arm of governments, its appeal to society in general is its promise to eliminate suffering. But at what cost to our humanity, to empathy, to mutual interdependence? asks Tankard Reist in some excellent closing reflections. No one has thought about this more than the women in her book, and one of them ought to have the last word. Julia Anderson writes:
“Through his pain and the turmoil of his short, difficult life, Andrew was overhauling our family on the inside. He was at work changing our souls in a way that only he could. He was teaching us that external appearances, physical disabilities and even grotesque pain were not the most important things in life. From him we learned to look at our own perfections differently. We learned to see that we are all imperfect, just in different ways.”
Carolyn Moynihan is Deputy Editor of MercatorNet
* See, for example, Brian G Skotko, “Prenatally diagnosed Down Syndrome: Mothers who continue their pregnancies evaluate their health care providers,” American Journal of Obstetrics and Gynecology (2005) 192, 670-7; and David Mutton et al, “Trends in prenatal screening for and diagnosis of Down’s syndrome: England and Wales, 1989-97, British Medical Journal 1998;317:922-923