Alice is my daughter and I started to photograph her when she was a year old. Photographing her in the context of our family over the last three years has been and still is an extraordinary experience and one I feel deeply passionate about.
Alice was born with Down’s Syndrome, but is no different to any other little girl or indeed human being. She feels what we all feel. She needs what you and I need. My family is also a microcosm for the dynamics occurring in many other families – all the joys, tensions, ups and downs that go with the territory of being in a family.
Previously as a psychotherapist I have listened to many stories and it is interesting that what has been revealed to me, after fifteen years of practice, is not how different we are to one another, but rather how alike we are as people. It is what we share that is significant. The stories vary but we all experience similar emotions. We are all vulnerable to feelings of anger, grief, depression and so on.
Early on in the pregnancy my partner and I were told we had a high probability that we were carrying a baby with Down’s Syndrome. Despite this, I was not prepared for how I would respond after Alice was born and diagnosed. Alice did not feel like my other children and part of my response was to pull away from her. I was fraught with anxiety that rippled through to every aspect of my relationship with her. My anxieties penetrated my dreams. On reflection I saw that Alice was feeling my rejection of her, and that caused me further pain. I saw that the responsibility lay with me: I had to dig deep into my own prejudices. The result was that as my fear dissolved, I fell in love with my daughter. We all did.
Alice entered a world where routine genetic screening at twelve weeks gestation is entirely weighted towards birth prevention, rather than birth preparation. Whilst we make our selection and decisions in private, the effect on society is that in the UK, the latest figures (in 2015) tell us that ninety two per cent of Down’s Syndrome babies are terminated at the pre-natal screening stage. Even prior to the introduction of screening, children such as Alice would have been severely marginalised and often institutionalised, with little or limited medical care. This is a story that concerns all of us, my daughter’s diagnosis is only one aspect of it. The rest is about yours and mine, and indeed society’s relationship with ‘difference’ of all kinds – this is what Alice is inviting us to reflect on and what the story is showing us.
Ultimately, this is also a story about love and what gets in the way of that.
The process of photographing this work helped me shine a light on why I struggled to love her, which was essentially fear and uncertainty. Alice has been a huge part of the process, guiding me to what needed to be expressed. I always knew she loved me, it was never about that, it was always about me needing to fall in love with her – which I did. She is in the middle of everything that we all do now as a family and is loved unconditionally, as it should be.
This book is for her, for Alice.