Extent: 160 pages Format: Hardcover Publisher: tbc ISBN: tbc
Publish date: March 21st 2013 Category: Health, Parenting, Families
‘I hope it will be an inspiration to people who might find themselves in what they think is an Impossible situation’
Ross Irvine (Jamie’s dad)
‘We know that new parents want to see real families just getting on with life after having a baby with Down’s Syndrome’
Pandora Summerfield, CEO, Downs Syndrome Scotland.
The books title, Six percent, is taken directly from statistics presented by the UK Cytogenetics register which show that of all the pregnancies diagnosed as being Down Syndrome, 6% result in a live birth, 91% are terminated and a further 3% of babies are miscarried, or die at birth.
This book is unusual in that it presents striking black and white photographs with captions derived from interviews, with a number of affected families by one photographer. A number of books already exist which show a very personal view, within one family, while the aim of this book is to show a diverse and balanced perspective across a number of family groups from the viewpoint of someone who knows nothing about the condition. This then reflects the experience of many families who are introduced to Down Syndrome for the first time when they are told that their child has the condition.
Likely to be of interest to expectant and new parents of children with Downs Syndrome, medical professionals and the public at large. Six percent aims to present real images and quotes from families describing their experiences. This includes very personal accounts of thinking around the time of diagnosis and then birth where families describe how they felt and how their views have developed. Some of the captions are shocking while others will prove uplifting.
Many families describe a feeling of shock, a period of adjustment and then acceptance. Those featured have all been determined to share their experiences, so that others can learn from them.
Through Six percent, the photographer and interviewer, Graham Miller, does not seek to take a position as to whether the decision to terminate a pregnancy is justified or not. Instead he seeks to present ‘What I saw and heard - no more no less’. On that basis, it is to be hoped that this book then provides a welcome additional source of information alongside that already available in the public domain which often focuses more on the medical ramifications rather than day to day life.
Graham admits that through this project, in common with his other documentary photography work, he seeks to address the underlying theme of the importance of individuality. ‘When I take photographs of someone affected by disability I see their condition as just one more aspect of them which goes towards creating the whole person. Small, tall, black hair, no hair, young, old and indeed having Down Syndrome are our ‘specifications’ and its society that tries to put us in a box. I pursue ‘humanity without constraint’ and it is my passion that we all do the same one day’.
Six percent will be published on UN World Down Syndrome day alongside a touring exhibition.
All content © Graham Miller 2012 unless stated and must not be reproduced in any form without prior permission
To see a sample of the book and find out how to pre-order your copy click here.