Greater Expectations: living with Down syndrome in the 21st century Edition book cover

Greater Expectations: living with Down syndrome in the 21st century Edition

Author(s): Jan Gothard (Author)

Publisher: Fremantle Press
Publication Date: 28 Mar. 2011
Edition: First Edition
Language: English
Print length: 352 pages
ISBN-10: 1921361778
ISBN-13: 9781921361777

Book Description

A comprehensive and deeply researched oral history drawn from sixty interviews conducted over more than a decade. Parents revealed their family lives to the author with honesty and candour, while people with Down syndrome provided an unparalleled opportunity for interview.

Editorial Reviews

Review

This is the book I’d want to read if I had had a child with Down syndrome. It’s the book I’d recommend to parents who already have a child with Down syndrome, or for whom prenatal testing has indicated Down syndrome, and they are wondering what on earth the future holds. As a scientist working in the area of child health, I would also recommend it to all those people – teachers, health professionals including doctors, and policy makers – who work with people with disabilities or who make the decisions which affect them. –Professor Fiona Stanley AC Patron, Down Syndrome Association of Western Australia

A lot of books on Down syndrome cross my path, but I started reading this one and couldn’t stop. Jan Gothard’s fascinating, wide-ranging research opens a window onto families’ lives and shows us, dramatically, just why we can have greater expectations for people with Down syndrome in the 21st century. –Michael Berube, Paterno Family Professor in Literature, Pennsylvania State University

About the Author

Dr Jan Gothard teaches 20th century Australian history, Australiasian relations, and Australian environmental history in the School of Social Sciences and Humanities at Murdoch University, Western Australia. Her research interests include migration, disability, and oral history. Dr Gothard has authored and co-authored a number of publications.

Excerpt. © Reprinted by permission. All rights reserved.

Greater Expectations

Name: Greater Expectations: living with Down syndrome in the 21st century Edition
Author: Jan Gothard (Author)
ISBN: 9781921361777

Living with Down Syndrome in the 21st Century

By Jan Gothard, Janet Blagg

Fremantle Press

Cover,
Title Page,
Copyright,
WELCOME,
FOREWORD,
PARTICIPANTS,
ACKNOWLEDGEMENTS,
INTRODUCTION,
1: ‘THE BABY I’ D DREAMED OF HAVING’,
2: MAKING CHOICES,
3: ‘IT’ S NOT A DISEASE, YOU KNOW!’: DOWN SYNDROME AND MEDICAL ISSUES,
4: GIVING HOPE A HELPING HAND,
5: LEARNING TO BE NORMAL, LEARNING TO BE DISABLED,
6: SCHOOL’S OUT: THE RIGHT AND RITES OF PASSAGE,
7: ‘WE’VE GOT TO OUTLIVE HIM!’,
8: ‘A DIFFERENT WAY OF LOOKING’,
NOTES,
INDEX,

CHAPTER 1

‘THE BABY I’ D DREAMED OF HAVING’

‘I remember one of the nurses coming in and saying, “Well you’re lucky she wasn’t born thirty years ago, because she would have been put away and what have you. She’ll go to school and she’ll learn to read.” I was lying there thinking, yes, but she was going to be a brain surgeon.’

(Heather Burton)

In 1990, two years before my daughter Madeleine was born, Fay Weldon’s book Darcy’s Utopia was published.

I think about my friend Erin as I often do. She has a Down’s syndrome baby. We all knew it would be disastrous; we foretold that her husband would walk out, that her other children would suffer: we saw she was the only one of the family unit who couldn’t bear not to see the fruit of her womb, however sour, ripen, drop and live. And that’s how it turned out: the child, now twelve, is badly retarded. Erin is no more than its nurse; she manages without a husband, her other children are spiteful and embarrassed. Erin talks about the joy the mindless child brings her — well, so it may, but her love for it has been most destructive for others. Left to us, friends and family, we would have said no, Erin, sorry, not for you. This baby you insist on having keeps other babies out, ones which won’t cause this distress to you and yours. Just not this one; Erin, try again.

Images of the person with Down syndrome, mostly unattractive, have always been present in our literature. Benjamin Compson, Faulkner’s shuffling idiot narrator in The Sound and the Fury, is based on a character with Down syndrome, and it’s not hard to find similar examples — the sad-eyed Mongol in Take Me to Paris Johnny and the ‘retarded Mongol brother’ with the mismatched ears in The Jane Austen Book Club are just two. As every parent of a child with Down syndrome is told though, ‘Of course, things are so much better now!’ The Memory Keeper’s Daughter, an enormously popular recent novel which focuses on a baby with Down syndrome relinquished at birth, is light years away from Darcy’s Utopia.

Today, for those who look, there are many positive depictions of people with Down syndrome in circulation in Australia: television programs such as the memorable SBS series House Gang, for example, which featured a group house occupied by people with intellectual disabilities, and the US TV series Life Goes On, starring Chris Burke. Pascal Duquenne was the Cannes award-winning star of the 1996 Belgian movie The Eighth Day and in 2009, the Spanish actor with Down syndrome Pablo Pineda was awarded the prize for best actor for his role in the movie Me Too. In the United Kingdom the fabulous ‘docu-soap’ The Specials, filmed in a household of young people with disabilities including Down syndrome, is great viewing.

Like the concurrent process of ‘mainstream

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Greater Expectations: living with Down syndrome in the 21st century Edition