6% by Graham Miller launches on #WDSAD2013

I have dropped tiny hints over the past weeks, unable to really say much while the project was under wraps, but too excited to keep it all in. Little flurries of anticipation kept escaping the bag in which they were contained. Finally I am allowed to tell you of an amazing project I have been asked to help launch.

Every once in a while you stumble on some work that really resonates with you, really inspires, something very different and unique in its essence. Such work was the black and white documentary photography by Graham Miller who I stumbled across on Twitter. He focusses solely on the lives of those who have disabilities and his work is fascinating, eye-opening, positive and true. It is full of emotion and life. I think you will be as captivated as I was by Photohonesty.

Graham's latest project is one which is very close to my heart for he has captured babies, children, young people and adults with Down's Syndrome on film. He has then matched their words, or those of their parents with the images, to astonishingly powerful effect.

I have been lucky enough to have see the book in its entirety. I knew it would be emotional, so I waited for a quiet moment when I could give it my full attention. That took nearly a week and I think Graham was wondering if indeed I was bothered about reviewing his project at all, but I'm glad I did it that way, for it stopped me in my tracks. I looked, took a breath, a tear, a quiet sob, and many smiles, for Graham has managed to encapsulate all the feelings I have as a parent of a little girl with Down's Syndrome.

There's worry, happiness, pride, a sense of having learnt so much on our journey, and also a sense of dispair and sadness at the cold hard fact that most of society just don't understand what having a child with Down's Syndrome means. Afraid, ignorant and fuelled by fear, 91% of parents expecting babies with Down's Syndrome opt for a termination. Other babies will not be strong enough to survive the pregnancy, and so, that leaves a haunting figure of around 6% who will make it into this world.

‘The data on outcome show that after the prenatal diagnosis of Downs Syndrome 91% of affected pregnancies are terminated and 9% are continued. Some of the continued pregnancies miscarry naturally, some end as still births, and approximately 6% of prenatal diagnosis are live births’.

Source: The National Down Cytogenetic Register for England and Wales: 2010 Annual Report

This became the title of Graham's book: 6%
Down Syndrome My photographs Their Stories

It will be launched on 21st of March 2013 to coincide with World Down's Syndrome Day and Downs Syndrome Scotland are backing the venture. I am bursting with pride to have been asked to speak at that event, in an art gallery in Edinburgh.

Please take a moment to have a look at the preview of the book on the Photohonesty website (Link below). You can pre-order copies there, or offer help with printing and distribution. I am certain this will become an essential book in many of our houses, equally inspiring for new parents and those of us who are a little further along the journey, as well as professionals and the public at large.

It certainly celebrates our wonderful children and what they bring to our families whilst acknowledging and validating the period of adjustment that many families go through initially.

For a sneak preview of this powerful book click here 

There you will find a mini version with pages you can turn. 

6% Book Launch on World Down Syndrome Day 13

6%: DOWNS SYNDROME MY PHOTOGRAPHS 

THEIR WORDS BY GRAHAM MILLER

Six Percent: Down Syndrome my photographs their words

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.

A Minor Illness: How Lucky We Are

The last couple of days have been put-everything-on-hold, stay-at-home-and-snuggle kind of days with Natty. 

There's been a temperature, there's been vomit in our bed, ingrained in her PJs and even over daddy Downs Side Up's cashmere mix sweater (eugh). There's been a small croaky voice, sore throat and pallid brow, some floppy afternoon snoozes, but essentially she is OK.

She's still managed to make me laugh with her silly impersonations, she's eaten small amounts of toast or mashed potato, she asked for a 'dip, dip, dip egg' and her little giggle has filled the air. She's been well enough to request that awful purple dinosaur on the iPad and to read me a school book. In short, it's a little bug and her body is coping with it.  And as awful as it is to see your child under the weather, I have enjoyed the closeness and the enforced pitstop it has given me.

All of a sudden I realised how grateful I was. How much stronger she has become. A couple of years ago a bug like this would have sent us to hospital with a closed throat, chest infection, pneumonia, croup, laryngitis, broncialitis, a febrile convulsion. I still worry. A lot. But since her heart operation she has been more resiliant. We are not on red alert the entire time.

Natty after her heart surgery

And then I look around me at my online friends, and I see many still living through that heightened state of alert, of worry, of uncertainty. Steph Nimmo into her 3rd week in hospital with Daisy, Renata moving bravely forward with Dom's recent issues, Baby Harry's family still waiting for him to smile after his stomach op. Friends Rachel and Vicky at home, watching over their vulnerable ones for the first sign of change that can signal a long period of illess. 

And then, today, the desperately sad funeral for a tiny little angel with Down's Syndrome who didn't make it through pregnancy into the loving arms of her parents who we had got to know via Downs Side Up. She was so wanted and so adored, and she has changed the world for the better without even realising it, for she has changed opinions and brought family together in an unexpected way. 

Baby Daisy, I have thought of you all day, a wild, windy passionate storm of a day. Tiles flew from my roof, greenhouse smashed, trees fell and cables were torn down and I imagined your parents hearts matched the rawness of the elements as they said their farewells to you. Rest in Peace little one.

And as I write, heavy-hearted, I have a tear in my eye, for I realise the fragility of life, of all our lives, but particularly the life of a child with Down's Syndrome. Pregnancy is a minefield, in more ways than one if you have a detectable extra chromosome. If you survive that, then you are one of only 6%.

Tonight I hugged our girls a little tighter.