Kaz Cooke under fire for 'damaging' information in latest book

Israel Wood, with his mum Sunshine (right) and his grandmother.
Israel Wood, with his mum Sunshine (right) and his grandmother. Photo: Supplied

One of Australia's most successful parenting writers has been forced to respond to claims her latest book  "perpetuates out-dated stereotypes" of people with Down syndrome.

In an open letter to Kaz Cooke, the Chief Executive Officer of Down Syndrome Australia Ellen Zkladzien says the recently released updated edition of the hugely popular Up The Duff is "hurtful towards people with Down syndrome and those who love them".

"The suggestion that 'a child with Down syndrome will have a serious mental disability' is at best a very outdated way of discussing an intellectual disability and at worst purely biased and inaccurate information," the letter reads.

The latest edition of Up the Duff.
The latest edition of Up the Duff. 

"There is no discussion of the fact that most children with Down syndrome are included and valued in their communities or that the vast majority of people with Down syndrome report having a high quality of life.

"The use of the term 'risk' to describe likelihood of a diagnosis of Down syndrome, is inappropriate and outdated. The Royal Australian and New Zealand College of Obstetricians and Gynaecologists guidelines now point to more neutral terminology like 'chance' or 'probability'.

"The discussion of termination does not provide balanced information.  The statement that 'the quality of life of a person with Down syndrome is hard to predict' is not a useful statement, the quality of any baby's life before it is born is unpredictable.

"There is research evidence that suggests that most people with Down syndrome have a very high quality of life. This is omitted in your book. You do not provide information about the supports and information that is available in Australia."

The letter, shared on social media last week, was supported by parents of children with Down syndrome around the country who described information provided in the revised edition of the book as thoughtless. 

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NSW mum Sunshine Wood, whose nine-year-old son Israel has Down syndrome, told Essential Baby the language used in the book is "damaging".

"She has made Down syndrome seem like a disease that is not compatible with life and so termination is the only option. This is so far from the truth. Down syndrome isn't an illness. It's a genetic condition that needs to be explained to an expecting parent in a supportive and educated way," Ms Wood says. 

"This should be a parent's informed personal decision only and all up to date information, both possible challenges and possible positive outcomes should be given along with details of mums groups and Down Syndrome Australia's contact information."

Israel Wood, with his dad Ramesh.
Israel Wood, with his dad Ramesh. Photo: Supplied

Ms Wood says the outcomes for people with Down syndrome have improved substantially in recent times, and this needs to be reflected in information provided to the public. 

"Thanks to new interest now in people with Down syndrome, and medical advances, their quality of life has improved vastly," she says.

"With the right supports in place, a great medical team and a good diet, people with Down syndrome are now living much longer healthier, and higher achieving lives. They contribute greatly to the community and are genuinely valued."

When contacted by Essential Baby, representatives for Cooke said the author would not be commenting on the issue and would "respond directly to the team at Down Syndrome Australia rather than talking publicly".

In a follow up social media post on Tuesday morning, Down Syndrome Australia said Ms Cooke had contacted the organisation and had committed to working with them for future editions of her work. 

"Down Syndrome Australia is pleased to report that Kaz Cooke has responded to our concerns regarding the portrayal of Down syndrome in her recent edition of Up the Duff," the post reads.

"She has agreed to work with Down Syndrome Australia to inform the next reprint of the book. We look forward to working with Kaz to help ensure that her readers can get access to the most up to date information about Down syndrome and prenatal screening."

However many parents are not happy with the response, saying a public correction and apology needs to be made.

"In the end her most recent reprint hit the shelves in the last few days and the likelihood of a reprint any time soon is unlikely which means women will continue to read her outdated and ablist viewpoints,"  Assistant Director of T21 Mum Australia Network Megan Smith wrote.

 "Until a reprint is issued Kaz should post an apology and a correction with updated information and resources linked to her Facebook and website. T21 Mum Australia Network will continue to push until a public response is issued."