Sally Phillips explores in her recent BBC documentary the possibility of a world without Down’s Syndrome in the face of new, less intrusive and more accurate screening. At each turn her desire for a more positive attitude to Down’s Syndrome was trumped by the mother’s right to choose. Even Sally accepted that mother’s should have a choice.
Choice is an essential human right. To be so poor or to live in a totalitarian regime where there is no choice is rightly seen as dehumanising. The freedom to choose is a good thing but in Iceland the freedom to choose means 100% of women decide to terminate an embryo diagnosed with Down’s Syndrome.
With advances in our understanding of the human genome and improved screening, we will soon be able to terminate embryos with a wide range of conditions. Why would a mother make a choice to proceed with a pregnancy knowing her child might face significant impairment or be at risk in the future of a debilitating disease?
As long as the argument is framed in terms of choice then mothers such as Sally Phillips will be a lone voice. But in the end is this just a matter of choice? When we are deciding who may or may not be born this is not about choice; it is something much more profound. To reduce everything to an individual’s right to choose is to diminish the nature of human experience. It reduces life itself to a series of impoverished binary choices of good v. bad, right v. wrong, and most worryingly normal v. abnormal. The human experience is infinitely more complicated and multi-layered than these simplistic binary choices imply.
This is not for one moment to lessen the very real challenges of bring up a child with Down’s Syndrome but equally it is to affirm that I for one know my life would be the poorer if it were not for the friendships I have shared with young adults with Down’s Syndrome.
There are no quick easy answers here but to silence the voice of Sally Phillips on the altar of choice is to do us all a dis-service. We owe each other better than that. There is a deeper conversation to be had about what it means to be human and the recognition that choice is not the beginning and end of human dignity. There are many voices that need to be heard in this conversation, not least the voice of those with Down’s Syndrome.
Without diminishing one once of the complexities to be addressed, for me the world felt a better place as I watch Sally Phillips join in with the Down’s Flash Mob dance in an undisclosed shopping centre – after one hour of difficult viewing my heart finally danced.