6% My Photographs Their Stories by Graham Miller: A Book Review

On World Down Syndrome Day many projects came together around the world, designed to celebrate individuals with that extra chromosome, educate those around them and draw communities together.

The 6% exhibition opens with Eve's photo

Front cover
One project I was passionate about and very proud to be asked to attend the launch of, was the new book photographic book 6% by Graham Miller, created with support from Down's Syndrome Scotland.
To see a sample flip book, click here.

What an amazing trip I had to Edinburgh. Again I swapped my customary jeans and wellies for city attire and headed for life a little more cosmopolitan. A day of travel alone can never be underestimated when you are a full time mum. No access to a pc for blogging and nothing to do but sip tea, read in-flight magazines and listen to my massively underused iPod. It was hard work but I forced myself.

On Wednesday evening the gorgeous Heather and Sharon from Down's Syndrome Scotland took me out for supper. We chatted like old friends, put the world to rights and I was immediately pleased I had made the journey.

After a luxurious bath back at the hotel, and a final rewrite of  my speech notes for the following morning, I settled down to an early, uninterrupted night's sleep. And that is really saying something. A rare treat indeed!

Thursday morning brought new excitement. Meeting Graham Miller's entire family for breakfast in a trendy cafe in one of the artier corners of town. Sorry I could only manage 3 sparrow's bites of scrambled egg guys... the emotions were beginning to run high.
Together we all went to the gallery for the book launch.

Such an amazing experience, not least meeting the astonishing families featured withing the book and their beautiful children,  Sylvia, a powerlifter in her 50s and her trailblazing Mum,  then Pandora from DSS and Joan McAlpine, a SMP whose sister has Down's Syndrome. All of us sharing common ground, similar emotions, aims and journeys.

So here's why I think Graham's work is so powerful, has the ability to change lives. This is what I read at the launch, interspersed with pictures from the day by journalist Walter Neilson and Graham's daughter Holly Miller:

When Natty was born I was shocked, overwhelmed and mostly afraid.
Afraid to look at her even, consumed with the fear of loving her, and worse still of losing her.
Terrified of the unknown future that stretched ahead of us like a darkened tunnel.

As she lay between worlds, precious and fragile in that hospital incubator, a tiny fragment of a clinical world that didn't feel real, where we were not in control, where she did not feel as if she was our daughter, she was utterly unaware of the eclipsing stigma that was attached to that tiny extra chromosome of hers.

Parents and guests at the Summerhall Gallery, Edinburgh

I had an instant mental image of what our baby would become.
This snapshot created by my own ignorance, an internal picture composed from glimpses into unknown individuals lives that I had witnessed fleetingly.
Natty became the personification of all my preconceptions, gleaned from growing up in a wholly uninclusive 70s and the medical preofessions language that presented her to me.

They took a dimly lit and grainy Poloroid of our baby that first day.
I guessed this was because they thought she wouldn't survive.
Looking back perhaps this was the reason, perhaps it was to encourage us to look and talk about her at home, to begin to bond with her.
But I could not bear to look at the image, and it stayed hidden in an envelope in a folder of medical notes.

Cara and her father proudly stand by their photo

Only two years later, when Natty's heart surgery had finally been decreed a success, that we felt a tangible worry lift from our shoulders, did I eventually peek inside the envelope.
A sudden flashback to that shaky beginning.

But, how I did crave images when Natty was born. Real true images of what our life would become, if and how it would be different from what had gone before.

A neonatal nurse whose grown up daughter had Down's Syndrome leant us a family photo album that was to become a turning point: family days at the beach, Christmas lunch, bath time, cuddles on the sofa, all shown in dog-eared simple snaps. This was real family life.

The joy the exhabition brought to Cameron when he saw his image

There were leaflets too, from charities and support groups. I devoured the facts but then found myself simply poring over the ever important images of babies and toddlers for hours, searching for any that looked like Natty.
It sounds ridiculous now, but I wanted to know if she would resemble us. Would she be pretty even? I was hungry for reality.

When a child is born with Down's Syndrome, every member if the family has their own idea of what this means to them. Apart from the younger siblings of course. To them, it is hard to find the words to explain.
I was so acutely conscious of our eldest, confused by Mummy and Daddy's tears when her little sister entered her 2 year old world.

Why couldn't the new baby come straight home? Why did her cold mean she was not allowed to visit? Why was she forced to watch the impromptu Christening through the thick glass barrier of the SCBU window?

Twins Ruby and Darby with their parents

We had to find a way to explain to that startled 2 year old. Again we turned to pictures, in books designed for small children.

When I started Downs Side Up it was purely to prevent other families from feeling the desperation I did in those early days, with snapshots of our daily lives; the fun, the humdrum, the challenges too. To provide what I had hungrily searched for in those early days, a glimpse into a real domestic world, to 'gently change perceptions of Down's Syndrome from within hearts.'

When I stumbled on Graham's work via Twitter, I held my breath.
I saw in an instant one who's motivations were the same as mine; to portray reality, to carry others along, to challenge perceptions. bring about change, raise questions. provoke discussion, unite, celebrate difference and shatter stigma.

Graham Miller signs books with Pandora from Down's Syndrome Scotland

He thinks beyind the parameters of anything that has come before, to show that life goes on pretty much the same as it did before with Down's Syndrome, only in many ways better, with the inevitable hurdles making you a stronger person, a better parent than you ever imagined, a part of a closer family than you had before.

In truth 6% stopped me in my tracks.
The pictures cut to the very core of one's soul, tapping emotions you weren't aware of, both historic and current. I looked. I heard sobs. Theye were my own.

A picture can do all that in a split second, with the words of the families so poignany in addition, so many feelings I identified with, but has shut safely away. How liberating to have them validated by others who have lived through the same.
The title too, 6%, hammering home how rare and precious our families are.

Eve proudly holds a copy of 6%

What this book will provide for others is immeasurable. Not sentimental, nor depressing, nor neutral or outdated. It is real.
Oh, how I wish it had been around six years ago.

The love between siblings captured beautifully. Parents sharing everyday joys. Older generations included, and needed. Worries and difficulties. Fathers' voices. The laughter, the smiles, the heartache. Family togetherness.

A photo speaks to an entire family, touching grandparents and young children alike, each able to take what they need and understand from what they see. No other medium can work in this way.

A chance for me to meet the stars of the book, here with Matthew's family

We all know now that we wouldn't change our incredible children for the world, for they are our greatest teachers, and Graham has found a way to get this message across. He is a mover and a shaker indeed.
And I thank Down's Syndrome Scotland for having the foresight to encompass such an innovative work, for realising that indeed it is what families really want to see.

Of course I didn't manage to read this without the tears pricking through. But how wonderful to see many of the families crying with me. We truly had found friends for life.

You can buy Six Percent: Down's Syndrome My Photographs Their Stories from Down's Syndrome Scotland or through Beyond Words.

Further reviews can be read here.

1 comment:

  1. Hi Hayley
    Its Ross, Jamies dad here (from book). It was nice to have briefly met you at the book launch. Your heart felt words on the day were very emotional and this still comes across on your blog. I think I speak for everyone who was there when I say it was an amazing event, that I will certainly not forget.
    We got involved in the book project from very early on and instantly liked Graham and felt we could trust him, and he's certainly not let us down. We are extremely proud to feature in the book and hope that it helps families in the future.
    I consider Graham a good friend now and I am keeping involved in the project to help get the word out !
    Thanks Ross


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