Ultimate Choice or Infanticide: The Human Reaction

*Trigger warning: late-term abortion*

I have mused this post for weeks. Each time I sit to write to you, and 'you' are many, my head fogs with the complexities.

The laws, the campaigns, the emotions and stories - mine, yours, theirs. 

I have procrastinated because I can hear the noise of the polarised disputes before my words even reach the screen. 

Ultimate choice or infanticide? Ground E abortion law and beyond

"This is tearing our community apart. It's so complex." I wept.

But the time has come to cut through the mesh of threads that encase the ethical debate that surrounds abortion on the grounds of disability. It's time to put on hold the differing agendas and find our common human ground.

"There are things that need to be changed, laws that need be updated, we have come so far, I do believe the medical profession are listening. We need to link up best practice. Collaboration is the only way." my heart told me.

You are a friend, a woman of the world, a Dad with a conscience, a feminist at the school gates, a celeb with a heart. You have been around the block or are new to this game, you are a parent whose heart hurts, you have your religious beliefs or you are an atheist, but without doubt you are someone who works towards an accepting and inclusive society. 

I know all this but still I couldn't fathom how to have this difficult conversation with you.

Then you both, wiser and further along this path than I, sent me the answer: a Tweet from above.

"Gentle ripples. Changing things because people want to Hayley, not because they are forced to, leads to lasting change." 

"Keep pushing the boundaries in a gentle manner Hayley." you urged.

You were right of course.

It's a conversation over coffee, because you enjoy my company. Not me trapping you in a dark corner and gagging your response until you've heard me out. We have come so far together already. 

I listen to you in turn, your heartbreak, your loss, your worry, I respect the decisions you have made and the narratives you have shared. We have always done it this way and we mustn't lose our way now.

I have grown to rely on your support. You are the colleague without children who held me together after my first blogger vs troll experience, when this topic first came onto my na├»ve radar.

"This is what should have happened to your ******* ****** ******* - insert offensive term for daughter with Down's syndrome." the online commenter wrote, followed by a live link.

I clicked through. 

Naively, stupidly, I clicked through.

What I read stopped me in my tracks, turned my stomach over in a gut-wrenching reaction of repulsion. Anger, tears and nausea rose together.

I had never heard of partial-birth abortions before. 
I couldn't eat or sleep for days.  I physically shook.  I hid my pain and ultimately I persuaded myself that this was a hypothetical procedure, one that could only happen in another time, or another place, or in someone's sick imagination.

Not here, not in the society I inhabit. 
Not here in Britain could we end the life of a baby as it is being born at full term.

You shared in my disgust dear friend. You were the wise and seasoned hack who advised me there and then to never read comments on public forums. You were the long term blogger who'd taken trolls to court, you persuaded me in turn not to stop writing.

Grounds to Revise Ground E

But a year later, you were the trusted medical and legal sources from which I learnt more at the All-Party Ground E Abortion Inquiry (Behind these doors with signs too dull to push open, are the facts we need to discuss) headed by Fiona Bruce MP. 

A seasoned researcher, and a sibling, you invited me to give evidence alongside you. My late-night, pre-talk research taught me that no, full-term abortion is not a hypothetical procedure.  

Ground E, in a nutshell, is a clause that allows an abortion after 24 weeks, the decided point of viability, and anywhere up to 40 weeks including during birth, if there is a 'substantial risk' of the baby being born with a 'severe handicap'. Neither 'substantial' nor 'severe' are defined and are left to the consultants' discretion. 

And yes. You read that right. Up to full term. 

So in a cold Westminster wing, my heart bruised like yours, I shared my human story with you the parliamentary panel, made up of those with a drive for compassionate and family-centred care. I shared with you our ignorances in the early days when our daughter entered our word, and how much we have learnt from her since that unnecessarily shaky start, which could have been so different.

You listened to the shocking experiences of parents coerced into terminations following a diagnosis of Down's syndrome, reports of some feeling ridiculed and frowned upon if they did not chose that 'responsible path'. The jigsaw was fitting together, and the picture it portrayed was that the choice we are presented with as women might be narrower than we believe.

More importantly, I sat listening to you that day, absorbing your knowledge of human rights law, your take on euthanasia, your uncovering of misrecorded abortion figures, of the number of babies with talipes (club foot), cleft lip and palate and Down's syndrome that are included in the Ground E group each year.  Conditions which are by no means 'incompatible with life', of that we are all agreed.

It was a steep learning curve you took me on. The report you produced made valuable recommendations and uncomfortable truths. This was a thorough investigation into abortion on the grounds of disability and looked at every aspect of the process, including the quality of support for parents going through screening. 

You allowed me to write about it in your Midwives Journal last year, starting the conversation with those on the maternity frontline nationwide. This is where the assumptions will shift. 

What's Next?

Three years on and your recommendations inch forward, but the time has come to push them into the public gaze. We are behind you.

NIPT blood tests as we know them will soon be a thing of the past, even before they are rolled out, potentially replaced by a urine test that will identify Down's syndrome 'more cheaply and even earlier' in pregnancy. 

And before that is implemented you and I really need to talk about the wider implications. Antenatal screening has been around for years and it's here to stay, we have to make sure you the pregnant women all have the best information and support to hand to navigate the confusing waters and make the best decisions for your family.

Follow Your Heart 

I have written to the UK ScreeningCommittee suggesting that a (Learning Disability) Nurse on their board would bring balance. They replied to say that they are recruiting now. It's a huge step forward, insignificant as it may sound.

And I have written to several MPs asking them to help conclude the Ground E law revamp and improve support at every step for parents who choose to screen. 

I have warned them of the dangers of following Holland's lead, where it is legal to actively end the life of a newborn up to 60 days after birth under the Groningen Protocol which allows neonatal euthanasia? 

Would you be happy to see what many would call infanticide in Britain, softly sold as the humane prevention of suffering, as lifting a burden? It's upsetting to talk about, but we cannot ignore it. You fumed to read that ISIS were doing the same, yet it is happening much closer to home.

Regardless of the melting pot of views we all hold, this is a subject that unites.

Action Plan

   Do write to your local MP if you feel you would like to see these topics discussed in Westminster. I would like to see minor disabilities such as DS excluded from this law.
   You could sign this ePetition set up by Hoi Fei Kwok calling for a revision of Ground E abortion law.
   Share your stories and encourage best practice.You might like to go and talk to professionals about your experiences, get in touch with the Down's Syndrome Association Tell it Right midwife training programme and see if you can help.
   Have a look at Renata Lindeman's campaign asking the UN to reconsider programmes that focus on eliminating one genetic group, and Saving Downs Don't Screen Us Out is asking health organisations to put proper support and updated unbiased information into place before rolling out NIPT. 

And please, please don't stop listening

For you are the medical angel who considers my daughter's voice, who values her equally, who reaches out to those like us to collaborate and teach. You believe in offering correct information and truly unbiased support.

You are the fresh-faced student midwife who wants to pore over stories of good practice, to know exactly how to get your terminology right, how to provide that elusive unbiased support we all keep talking about. 

You are a mother figure who wants to start the right conversations that will create change. 

You are the journalist who has sat at my kitchen table crying tears into her coffee as we swapped heartaches. You are the Mum who painfully knows Ground E from experience. You are helping us rewrite the story.

You are the fellow parent working day and night to alter the course of history.

Please don't stop listening, this is not a moan or a rant, not an arrogant browbeating, but a search for our commonality.

You are everyone.

Societal Attitudes

This is about society's attitudes, not just discrete  and isolated communities. We cannot turn a blind eye to how we as a collective view disability.

We pride ourselves on our equality laws, those that give each individual the same rights, whatever their gender, ethnicity, sexuality or disability. Yet we are shouting loud and clear to those with disabilities that they are worth a little bit less, via the megaphone that is our current disability abortion laws.

Let's celebrate humanity and its many forms.


This is a topic that many bloggers, parents and medics have written about and I would like to invite you to add your posts on NIPT and Ground E to the linky below. 

The views of any posts added reflect the author and are not necessarily my views.

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