The thing that makes me happy today is Down Syndrome. Every one of my son’s 47 chromosomes is perfect. This last week finally the debate around the ethics of pursing a highly accurate, non-invasive test in pregnancy for Down Syndrome without passing on balanced information to women who get a positive diagnosis has finally begun in the UK. The comedienne and actress Sally Philips did a documentary on how this test was pushed out for widespread use across the NHS in the UK without a discussion on the ethics around such a test. The abortion rate is colossal, permits late term abortions and the information passed on by doctors is biased and outdated. People with Down Syndrome and their friends and family have not being given a voice. We occasionally win an edit of a newspaper article which refers to the ‘debilitating condition’ or manage to get one article to use people first language ‘person with Down Syndrome’ not ‘Down Syndrome boy’ but the reality is we are shouting about how great our lives are and how there is a terrifying agenda at play here in trying to identify as many children with Down Syndrome antenatally in the knowledge abortion rates are well over 90%.
This debate is hard and my ‘things that make my home happy’ in October is not the place to go into detail about it. I’ve done a post here about the ethical issues around the test, my thoughts on the documentary, and on media coverage of Down Syndrome.
Here I’m just going to celebrate how that extra chromosome makes our home a happier, more laid back place than it would be if we all had 46 chromosomes.
Daniel. 4 years old.
Loves: ice cream, reading books, counting, dancing, playing i-spy, visiting the farm, going on the train…
Dislikes: running water, the cold, people making loud noises.
He is my son. He is a delightful list of attributes that any of us might have. He is not a risk.