Why doesn't Sabina Higgins respect the right to life of my nine-year-old daughter?
Published 11/05/2016 | 02:30
I was returning home from the morning school run when I first saw the headline. There it was in the newsstand in great bold letters in my local garage.
So I read that Sabina Higgins, the wife of President Michael D Higgins, had told midwives in Trinity College the fact that a woman could be made to carry a pregnancy to term in a case of "fatal foetal abnormality" was an "outrage".
I thought of my nine-year-old daughter, Kathleen Rose, whom I had hugged and kissed that morning as she set off for another school day. I thought of how beautiful she looked as she giggled and waved excitedly at her little brother and sister through the bus window.
Kathleen Rose has trisomy 13, one of the conditions being used to call for abortion, and I thought of the joy she has brought to my life and all those who know her.
Then I thought of those ugly words used to describe her and all the other beautiful babies that I have been privileged to know through the support group Every Life Counts, a group where I have met so many wonderful families who learned to pour a lifetime of love into just hours and days because their babies did not live for long after birth.
Like all of those parents, yesterday I felt weary of the continued misinformation and the repeated use of misleading and discriminatory language.
But I also felt angry.
I felt angry for all the parents who are being denied proper support and care and nudged towards travelling for an abortion in our maternity hospitals.
I felt angry at the media's obsession with abortion, and their lack of interest in parents struggling because of the savage cuts that have been imposed on disability services - cuts approved by Labour, the political party Ms Higgins has long supported.
And, yes, I felt angry and upset that the wife of the President had deliberately targeted children like my little girl in this abortion push - and that she had used the ugly language of discrimination to justify taking the right to life away from very sick babies.
It is clear to me that Ms Higgins has little understanding of the issues involved and of the immense love and joy our children bring to their families, however short their lives may be.
The ugly phrase "fatal foetal abnormalities" is not a medical diagnosis, and there is no condition, none whatsoever, where a doctor can say for certain that a baby will not live beyond birth.
In an age where we expect our commentators to be cognisant of harmful language and of the rights of people with disabilities, it is hard to make sense of the decision of Ms Higgins to use this discriminatory and misleading phrase.
Let me be very clear on this point: it is a medical fact that the phrase "fatal foetal abnormality" is not a medical diagnosis.
Hundreds of doctors have signed the Geneva Declaration on Perinatal Care calling for an end to this misleading label.
Last December, Professor Jim Dornan told the BBC that the phrase has no medical meaning.
In fact, it is used simply to dehumanise unborn babies who have a severe disability. Most of these babies do live beyond birth - some, like Kathleen Rose, go on to defy all expectations.
Ms Higgins has misused her powerful, but unelected, position to disparage the worth of our beautiful children, whose lives were precious even if they were short, and she has added to the misinformation around this issue.
Ms Higgins's supporters may cheer on her intervention, but the fact is that her remarks gained traction only because she is the wife of the President.
I'm sure Ms Higgins was keenly aware of that fact when she chose to make her remarks.
Perhaps Ms Higgins is not aware of new research showing that women who undergo abortion after a diagnosis of anencephaly are significantly more likely to suffer depression and despair?
Is she aware that we hear increasingly that parents come under subtle but persistent pressure to go to England for an abortion in these circumstances?
Is she aware of the chilling effect that legal abortion has had in the UK, with up to 90pc of unborn babies diagnosed with any disability, including Down Syndrome, aborted?
As parents of children diagnosed with life-limiting disabilities, we would have been happy to meet with Ms Higgins and share our experiences, insights and the findings research shows.
We were never given that opportunity. Instead, we have to listen to her misinformed and insensitive comments. That is the real outrage.
Tracy Harkin is a member of Every Life Counts