Defiant birth: women who resist medical eugenics

Disabled parent Emma Bowler reviews Defiant birth: women who resist medical eugenics by Melinda Tankard Reist. 2006, Melbourne, Spinifex Press ISBN 1 876756 59 4 Price: £12.95 Available from www.spinifexpress.com.au.

Defiant birth tells the stories of 19 women from around the world who faced opposition to their pregnancies, either because they were disabled or because their baby was perceived to have some sort of disability.

These stories are sandwiched between a comprehensive introduction examining the rise, and implications of, prenatal testing and an afterword that looks at the concept of disability in society.

Some of the research quoted is quite shocking. One survey revealed that 70% of Australian obstetricians who specialised in ultrasound supported termination for ‘dwarfism’ at 24 weeks. But I couldn’t help wondering how accurate it would be to infer that similar results would be found in other countries, as attitudes towards disability do vary enormously across the world.

Several other research studies showed negative reactions towards disability but some were over a decade old and I feel that attitudes towards disability must have changed somewhat over that time.

The emotional impact of the book lies within the mothers’ stories.

Julia Anderson’s baby, who had Down’s syndrome, lived for just six months and I defy anyone not to be moved by the eulogy given by her husband: “Well, Andrew, we gave you what we could, but you gave us more”.

I suspect each reader of this book will empathise with a different story.

For me Leisa Whitaker, who has achondroplasia, struck a chord as I’d never heard someone describe my own experience of having a baby under a general anaesthetic so accurately. But I found the most disturbing stories were those where the baby had been adamantly diagnosed with a particular disability in the womb, the parent/s had resisted calls for abortion and then the baby was born with nothing wrong with them at all. Prenatal testing and diagnosis is by no means infallible and yet how many babies never enter the world based on such results? Overall, the book left me wondering whether I am extremely lucky in that throughout my first pregnancy, and so far into my second, I’ve not experienced one negative comment. Is this luck or do negative experiences only occur in a minority of pregnancies? I guess “I had a positive pregnancy experience” stories just don’t have the same media impact as “my pregnancy from hell “ ones which is why Defiant birth will cause a stir and if that leads to a further reduction in negative experiences that can only be a good thing.

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