Looking for Alice
My daughter Alice was born with Downs Syndrome 2011.
Alice has entered a world where routine genetic screening at twelve weeks gestation is almost entirely thrust 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 92% of Downs Syndrome babies are terminated at the pre-natal screening stage. Prior to the introduction of screening, children such as Alice would have been severely marginalised, probably institutionalised and given little or limited medical care.
I was deeply shocked when Alice was born as an 'imperfect' baby. It was not what I had expected. Our first experiences in hospital did little to diffuse this. Examining Alice the paediatrician pulled back her legs, pushed her thumbs deep into her groin, and promptly announced that we should take Alice home and treat her like any other baby. But she didn't feel like any other baby, and I was fraught with anxiety that rippled through to every aspect of my relationship with her.
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 and shine a light on them. The result was that as my fear dissolved I fell in love with my daughter. We all did.
I wonder how it might be for Alice to be valued without distinction, without exception and without second glance.
This project is for her, for Alice.