I have never been political. I was hardly able to understand the difference between the Tories and Labour really, except for the fact that it was not cool to be a Tory when I was at school. I didn’t know when elections were held, hustings sounded like a disease and I thought the Cabinet must be a very important piece of furniture in Parliament.
And yet, it is interesting how this all suddenly becomes important when it matters. We brought our daughter into a world that wanted to terminate her, where medical professionals were and are overtly suggesting that people like our daughter be screened out. The latest blog I read was that ‘‘People with Down’s Syndrome are an endangered species’‘! Sally Phillip’s programme, ‘A World without Down’s Syndrome‘ was in 2016, a year after our daughter had been born. She revealed that no one was being born with Down’s Syndrome in Iceland after the new pre-natal screening programme had been introduced. She interviewed scientists and people with Down’s Syndrome, and explored the ethical implications of having the new Non-Invasive PreNatal Test (NIPT) available on the NHS.
I couldn’t watch this without wondering why there would be such a fuss about screening for Down’s Syndrome, particularly when there are much more challenging conditions than that. When I look at Trudy, she certainly doesn’t seem to be suffering from anything except an occasionally heavy body and a strong will! This is a really difficult subject but I felt I had to make my case, so the Scottish Council on Human Bioethics helped me to write my first article, which was published in The Scotsman.
I discovered in my research that a baby with a genetic disorder such as Down’s Syndrome could be terminated right up until birth. The very fact that this was the case for one of our children and not the other shocked and appalled me. I questioned the notion of choice when there were stories of mothers being encouraged to have terminations. In a society that is working so hard to celebrate diversity and inclusion, the revelation that we might be working at the same time to destroy it sent me reeling.
But there are some wonderful stories coming from all this since 2016. Mothers often mention to me that they had the test and they ignored the results! One mother told me in the playground that, when she was expecting her first son at the age of 18, she was told to terminate but she went ahead with the pregnancy anyway. Her son is now 27 and thriving. Incredible campaigns have begun such as Don’t Screen us Out and Saving Down’s Syndrome, which have challenged government decisions to roll this out without due consideration of its impact.
Like all grassroots movements, I hope that these and people’s growing acceptance of difference will allow new parents to make informed and independent choices about raising a child with Down’s Syndrome. As I said in my article, I fear that the objectives of a national screening programme such as this one are not to better equip parents for the future as I would argue that a diagnosis of Down’s Syndrome tells you nothing about the child you will have. But it gives parents the option of avoiding it, and all at the expense of a potentially wonderful and inspiring life. So, I write this blog in the hope that it gives people choice and insight into how life could be with a child with Down’s Syndrome, and what they could offer the world.