I’ve never seen a picture of a person with Down’s Syndrome in a gallery. It’s not something we celebrate for some reason.
People with learning disabilities are still invisible in our society. Adults with Down’s overwhelmingly want to work and earn money and yet opportunities are rare.
I wanted to do something to change that.
My local theatre kindly agreed to host an exhibition of a selection of my images – mainly snaps taken on my various mobile phones over the years, depicting candid moments in my son’s life so far.
I found a printer in Cologne, and my blown up shots started arriving on my doorstep.
This is not a photography exhibition in my eyes: it’s more a celebration of a good and valuable life, a ‘love letter’ to my offspring. It’s about making disability visible and about challenging people’s perspectives.
The exhibition is a series of photographs I’ve taken of my family over the last 18 years.
The main subject is my son, Geraint, who is 18 and lives well with Down’s. It’s been such fun seeing his image blown up big and bold to cover the walls of an art gallery.
As I scrolled through the thousands of images I have collected of Geraint from being a tiny, cute baby to the handsome young man he’s becoming, I realised that the pictures spoke of the relationships he’s built whilst he’s been growing up in the beautiful Pembrokeshire Coast National Park.
Relationships are very important. I saw his incredible bond with his sisters shining back at me. I saw the different roles Geraint has played – baby brother, big brother, son, student, performer, friend.
Role models are also a theme that became apparent.
Geraint is emerging as a confident young man. The good men in his life are a major reason for that. They’ve taught Geraint by being around him and I can see that through my photos.
I’ve had the privilege of seeing Geraint learn to swim, take an oath to become a scout (and be part of a guard of honour for the Queen), perform, take to the catwalk at Cardiff Fashion Week, undertake hundreds of hours of voluntary work, care for animals, travel, climb mountains and even help his friends go caving.
It’s sometimes said that people with Down’s ‘never grow up’. I heard a quote (now I can’t really remember the exact words) but to summarise, the writer suggested that a child with Down’s was like a beautiful bud that never quite flowers. I hate that metaphor. And when I look at the pictures I don’t believe it either. Geraint has taken his time to grow up, but he’s definitely an adult. He’s blooming alright.
There’s an arms-race going on across the globe in the scientific world to identify all sorts of chromosomes and potential variations as early as possible in pregnancy.
The reality is, Down’s is a condition that’s become quite easy to identify very early on. Evidence shows that pretty much all such pregnancies are ended once the presence of the extra chromosome is identified. They call the test ‘NIPT’ and I find the saying ‘nipped in the bud’ springs to mind.
People with Down’s are quietly being removed by not being born.
My son represents an aspect of the human condition that is judged by society as being disposable and undesirable. The Down’s Syndrome community feels this pressure and sadly many families feel they need to withdraw and become invisible. There’s a subculture of ‘Down Syndrome’ events, clubs, services. Whilst these things may be helpful, the result is we disappear from the mainstream. I don’t think that’s the right direction of travel.
As a mother, I’ve been asked straight why didn’t I just have an abortion? ‘Didn’t you know?’
I believe in having a choice when it comes to a pregnancy, but what exactly is the story about raising a person with Down’s that leads to nearly 100 per cent abortion? That’s why I felt it was important to share my story and share my private photographs. I want to create another narrative and bear witness.
This exhibition is also a big thank you to all those who have enjoyed playing a part in raising Geraint. Only a small number of the many people important to us are in this show, but to everyone who has met and influenced Mr G – thank you.
Ultimately this exhibition is about love and family. I’m preparing myself for life after kids now. My kids are growing up and moving on. Raising my family to this point is the main achievement and joy of my life. We’ve been there for each other every time we’ve fallen: we’ve helped each other learn to fly.