person:alice de sian davey

CDB_77 2/08/2014

Looking for Alice de #Sian_Davey

My daughter Alice, born with Down’s Syndrome, is no different to any other human being. She feels what you and I feel. However, our society does not acknowledge this and her very existence is given little or no value. Alice has 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 ninety two percent of Down’s Syndrome babies in the UK in 2013 were terminated at the pre-natal screening stage. Indeed, prior to the introduction of screening, children such as Alice would have been severely marginalised and possibly 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. The paediatrician pulled back her legs, pushed her thumbs deep into Alice’s 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. My anxieties penetrated my dreams. I dreamt that Alice was swaddled in a blanket and that I had forgotten all about her. I unwrapped the tight bundle that she was nestled in, to feed her, only to discover her body was covered in a white fluid — a fluid of neglect; and yet I was unable to feed her, unable to respond to her basic needs.
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.