On Friday evening a story came into my facebook feed from an organisation called TFMR Ireland. What followed next was the most bizarre 36 hours and leaves no doubt in my mind how social media is undermining the ‘debate’ on the referendum.
TFMR run a facebook page and when I went to find out what they were about it said the following on their twitter handle:
“Parents affected by Fatal & Severe Foetal Anomalies. Supporting, Educating, Destigmatising & Advocating for legal change. Contact team@tfmrireland.com”
So I thought to myself, ok. I’m a parent that has buried a child that had anencephaly. I’ve had first-hand experience of what these people are talking about so I wanted to see how they were representing children like my son Noah.Unfortunately anencephaly isn’t the only life limiting condition that falls under TFMR umbrella. However, this is the only one that I have any experience of and have any confidence talking about.
I guess I need to put my cards on the table. I will be voting No in the referendum. I know that children like Noah represent 1 in 1,500 babies born. I know from our time in CUMH with Noah that approximately 50% of couples whose child had the same diagnosis as Noah choose to terminate abroad. I do empathise with these couples but here is the real problem. There were about 64,000 babies born in Ireland last year. That means that somewhere in the region of 40 babies suffer this most terrible of fates every year and 20 will be aborted abroad. My position is simple, the repeal of the 8th amendment that is being sought to alleviate the suffering of these parents that TFMR represents will result in healthy babies from healthy mothers in the remaining 63,980 babies being killed – it is a cast iron guarantee. I cannot accept this as collateral damage no matter how much each individual case tugs at the heart strings.
I started to read several posts and comments on the TFMR facebook page. Words like health and support were being used in the most bizarre contexts and without any real explanation but rather with implications that had to be interpreted. So, I just rolled in and started to ask what I considered to be reasonable questions.
Over the next few hours I became the subject of a mixture of hostile abuse or reluctant tolerance. In a way it was kind of funny. In an era of victim groups and identify politics TFMR and those who support them were kind of between a rock and a hard place because I was part of their victim group. But joking aside, it was the first time on social media that I felt real hate. I didn’t tell my wife that this was happening but as the day wore on friends and family were shocked at what was being posted against me on the TFMR page.
Anyway, we’re a busy household – I’ve other priorities to address and I said to myself that I would exercise my right of reply this evening. Well, guess what ? The entire comment history containing the abuse has been removed from the TFMR facebook page. Funnily enough, even the words and expressions in the original posts that my questions hung off of were also removed. I clearly had hit a nerve. The problem is that I now feel a bit like Don Quixote tilting at windmills. It would appear that this is my welcome to the brave new world !
I have to admit to feeling a bit depressed yesterday morning in the middle of all this. But you know what, life is great. At the same time I received an email from Una at EveryLifeCounts who had signed off with these beautiful words “Look to Noah for inspiration and guidance, he was here and he mattered”.
I would like to sign off by saying that I do not intend for this post to undermine the suffering of anyone who has had to deal with a pregnancy that is affected by a life limiting condition. The suffering is indescribable – but in our case the suffering was exclusive to me and my wife as parents. Noah did not suffer. He was in the most perfect of environments in my wife’s womb. He came into the world and lived for 80 hours. He never suffered in his life with us. He never cried. He was always held in someone’s arms, swaddled tight and crowned with a cotton cap. He was surrounded by love. He never opened his eyes but I am sure that he could feel the love that there was for him in the room.
It has taken me over 4 years to process the meaning of Noah’s life and the learnings from his time with us. The grief has not abated one bit. The learnings were that in the midst of life’s most dark moments love can reveal the most beautiful experience with the light that it shines. Noah showed what was possible if you can ‘rage against the dying of the light’.
An Aside;
It is very difficult to make a bad situation better. It is really easy to make a terrible situation worse. The proposals put in front of us for the referendum really represent the latter. For all its flaws I love the Irish constitution. We the people are sovereign. Do you know how amazing that is ? A lot of you probably watched the royal wedding yesterday. If you live in the UK or a commonwealth country it is the queen that is sovereign. Just let that sink in for a minute.
What does sovereignty mean ? It means that you as an individual have full right and power over yourself, without any interference from outside sources or bodies. That means that politicians, judges, the whole shooting match are answerable to you. You call the shots but unfortunately we’ve forgotten that and we let them all get away with it. The 8th amendment is the first salvo in the obliteration of your sovereignty. It is starting with the most vulnerable of them all, the unborn child and their right to life. What’s more. If it is passed the politicians will be laughing at us all behind closed doors because ‘we the people’ voted for our own sovereignty to be taken away.
Footnote:
Only this evening after some research did I find out that TFMR stands for Terminations For Medical Reasons – I would have saved myself a lot of hassle but missed out on some insightful learnings by not finding this out earlier.