Shelves: non-fiction , , parenting , australian-women-writers My sister passed this book onto me when I was back home in Australia at the beginning of the year; it was the only book, she said, that really helped her. Cooke wrote this book after her own experience with first pregnancy and being unable to find a decent book - and one My sister passed this book onto me when I was back home in Australia at the beginning of the year; it was the only book, she said, that really helped her. Cooke wrote this book after her own experience with first pregnancy and being unable to find a decent book - and one that looked at post-pregnancy as well, what to do with a newborn and more practical advice for preparing for one. Up the Duff is, like many pregnancy books, divided into chapters for each week of pregnancy. When you move around during the day, you rock the baby to sleep.
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I was incredibly disappointed and alarmed by the portrayal of Down syndrome in the recently released edition of Up the Duff. It is my hope that we can work together to address the concerns raised below. Down Syndrome Australia works hard to address the stigma and discrimination experienced by people with Down syndrome.
It is incredibly disappointing that a resource such as Up the Duff which is so widely utilised and respected provides such a level of misinformation about Down syndrome. Prospective parents in Australia are already struggling to get accurate information about Down syndrome and prenatal screening.
In a survey was conducted by Down Syndrome Australia and it found that of those who responded, more than a third of women who had a pregnancy with a prenatal diagnosis of Down syndrome felt pressure from medical professionals to terminate the pregnancy. Down Syndrome Australia respects the rights of women to make decisions about their pregnancies.
Informed decision-making following an unexpected screening result is only possible if up-to-date, balanced and accurate information is available about all conditions being screened for including Down syndrome. What is presented to the reader within the current edition of Up the Duff fails to support informed decision-making. This is incredibly disappointing. More broadly, the misinformation contained in this edition of Up The Duff about life with Down syndrome perpetuates out-dated stereotypes.
These are hurtful towards people with Down syndrome and those who love them. There are many reasons for concern after reading this publication which are outlined below: The portrayal of Down syndrome throughout the book is inaccurate and propagates negative stereotypes. 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.
It has prompted a change in the national guidelines for prenatal testing. 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. 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. This is not the most accurate description of the work that we do.
Down Syndrome Australia is the peak organisation for people with Down syndrome in Australia. We are part of the Down Syndrome Federation who support people with Down syndrome and their families. Our State and Territory organisations often meet with families who have received high chance results and provide balanced information and an opportunity to meet other families.
More specifically, your book does not include any explanation of the issues around positive predictive value. The Positive Predictive Value PPV of the test refers to how likely it is that individuals who test positive are to be affected by the condition. PPV depends not only on test performance but also on the prevalence of the condition in the population studied.
We are incredibly disappointed by the biased and inaccurate information available in this edition of Up the Duff. As it stands, this edition of Up the Duff contributes to a culture of misinformation, stereotypes and discrimination which negatively impacts the Down syndrome community while making it difficult for women to make informed decisions.
Down Syndrome Australia would be open to partnering with you to ensure information about Down syndrome and pre-natal screening is updated in future editions. I urge you to publicly apologise to the Down syndrome community and acknowledge the errors in this edition of Up the Duff. I ask that you commit to offering accurate, balanced and up-to-date information about Down syndrome in future editions. Kind Regards,.
Up the Duff: The Real Guide to Pregnancy
Up the Duff 2020 edition