Do women really have a choice whether to abort or not following an antenatal diagnosis of a disability?
Are we walking blindfold into a society where eugenics is gently presented, sugar-coated and unthinkingly accepted?
Are we fooling ourselves that we are exercising choice in our pregnancies, where actually choice, the choice to continue with certain pregnancies is being removed?
Are women given unbiased support to make informed choices about disability abortion?
It's easy to assume that the moral dilemma of whether to abort your unborn baby that you've learned has a disability, is confined to a shouty debate between pro-abortionists extolling the rights of women to end a pregnancy at any stage and for any reason, and desperate pro-lifers camped outside abortion clinics with their gory billboard campaigns, designed to shock and scare.
But when you live through what all the spin really means, when your heart has ached with confusion, or when you have crossed from one camp to another, then those angry polar arguments become nothing more than white noise. For as with all complicated moral and emotional issues, the reality, the experiences and beliefs of the masses, the experience of the common woman, lies somewhere in the vast stretch of thinking between the two extremes.
And yes, it's complicated.
Let's challenge what we are conditioned to fear
When pregnant with our second child I too clearly recall my fear of a 'less than healthy' foetus. I remember believing that I wouldn't be able to cope with a child with Down's syndrome. That I wouldn't be a good enough Mum.
I naïvely opted for initial, inconclusive, screening for 'peace of mind', arrogantly, ignorantly certain that all would be well. I hung on the every word of the consultant as he talked of the 'risk' I was at of having a baby with the condition.
I refused more invasive amniocentesis for fear of the harm it might cause 'a healthy baby' following five miscarriages and I declared that I didn't mind the sex of the baby 'as long as it was healthy'. But what if it wasn't healthy, and why don't we fear the harm an amnio could cause any baby, healthy or not? What was the dangerous underlying subtext of the clichés that tripped off my tongue as so many prospective mothers? That a healthy baby is worth more than one with health needs, or who simply looks and learns a little differently?
These were the social constructs I had never had cause to question, along with the inherent acceptance that pregnancy is conditional until an all-clear on a 12 week scan, until which point we keep it under wraps. And just how much negativity was wrapped up in that little four-letter word the doctor used: 'risk'?
Our second daughter was born at home, silent and blue, the dash to the Neonatal Intensive Care unit revealing a diagnosis of Down's syndrome, along with two small holes in her heart. The words punched through my soul. The bottom of my world dropped from beneath me and dark fear, worry and shock rushed in. Tears and 'sorries' from medical professionals whose lead we took almost showed us how to feel.
The reality of Down's syndrome today
But seven years on, having walked the path I was so adamant that I didn't want to take, I now know 'why me'. And I see with crystal clarity how wrong I was to swallow the lie that we are all fed. To fear, to avoid, to seek to eradicate difference. I cannot re-live those early days with the knowledge I now posses, but I can enlighten others.
For me, the realities of Down's syndrome today are of the independence that is possible with support and early intervention. The fast-paced hilarious home life, where there is never a dull moment. The truth is that we all benefit hugely from accepting and learning from different ways of living. Most of all it is understanding that those with learning disabilities contribute huge amounts to their communities. Every person I know with Down's syndrome lives life to the full and is valued and loved by all around them, whatever their capabilities. Human value is not a monetary logarithm.
Our lived reality as a family doesn't even begin to overlap the stereotyped image that my subconscious created before, from all the outdated glimpses into the lives of adults with the condition when I was a child. Not one aspect of our beautiful, cheeky, bright daughter, corresponds with that outdated preconception that flashed across my mind. What a steep learning curve it has been for us all.
Is the choice to continue a pregnancy being removed?
So, having analysed the root of my early feelings I see with absolute clarity the sugar-coated disability lie that we are all spoon fed, and I fear a somewhat sinister and subtle guiding of women by some medical professionals to terminate. How could I have made a life-and-death decision back then, based on what I thought I knew, but was utterly ignorant of? I am only thankful that I didn't know.
I was then and still am pro-choice. Who am I to judge another woman's situation, to force anything upon them? But today, knowing what I now know, would I recommend terminating a much wanted baby simply because they had an extra chromosome? Absolutely not.
Somewhere along the line, pro-choice has become muddled with pro-abortion. But choice can mean choosing to bring a child with Down's syndrome or other genetic conditions into the world. Most people would recognise this as the sign of a developed society, judging by the positive reaction to my open letter to Richard Dawkins on The Huffington Post in the wake of his worryingly erroneous comments that on the contrary, it would actually be 'immoral to continue with a pregnancy after a diagnosis of DS'.
Are we dancing with eugenics?
Furthermore, we shudder as a civilised society at the thought of past atrocities in eugenics and ethnic cleansing. Of course the Nazis began their work by eradicating those with disabilities. Those acts were evil genocide, yet terminating disabled foetuses happens every day, slowly eradicating one particular group of people from society in a way that we barely notice. We are making decisions about which lives are and aren't worth living based on what we think it might be like to have or live with a particular disability. And we sell it as early euthanasia.
In the West 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 adults with disabilities that they are worth a little bit less with our abortion laws, and very few of us are questioning that.
The cut off point for an abortion is 24 weeks, unless the baby has a 'severe handicap'. (Awful, outdated language I know, but then it is an outdated law.) Then it is legal to terminate that pregnancy up to 40 weeks, although this practice is thankfully rare. There is no definition of 'severe handicap' at all and it is very much down to each doctor's discretion.
You can read the All Party Parliamentary Inquiry into Abortion on the Grounds of Disability here. It makes convincing reading for changing this law and increasing support for parents at point of diagnosis and beyond, whatever their decision. It uncovers the facts that babies with Down's syndrome, talipes and cleft lip and palate do end up in the statistics that make up these late abortions, i.e. those with a mild to moderate developmental delay or superficial physical problems. Hardly attributes that render them 'not compatible with life', and that is an uncomfortable truth if ever I stumbled across one.
Partly, I can only assume this comes down to the perceived cost of an individual, how many "Quality Life Years" they can be expected to have (that is an actual measurement used) and our collective internalised fear of disability and the view that it is a burden to us all. But the reality is that disability is a normal part of life, furthermore, one that we are all one accident or illness away from.
Let's examine the example of Down's syndrome. 92% of all women who receive an antenatal diagnosis of DS opt for an abortion, (not all women agree to the standard tests however, and this group is growing in number), a further 2% of babies will be miscarried, leaving an approximate live birth figure of 6%.
Time and again women are being left unsupported at every step of the process.
Of the years I have been writing Downs Side Up I have spoken to only a couple of women whose experiences post diagnosis were positive, where they felt supported, because they had an understanding midwife and consultant. The vast majority report quite the reverse.
Those who choose to continue a pregnancy of a baby with Trisomy 21 are often treated with less respect than those who opt for a termination. Their maternity care changes and support dwindles:
"We were treated like naughty school children when we made the decision to continue the pregnancy."
"My midwife got cross when I said I didn't want testing. She said I was selfish and should consider my older children."
"My consultant said he could no longer care for me if I continued with the pregnancy."
"We were given two leaflets, one on amnio, the other on termination."
"My midwife said there was a slot for a termination the next morning. There was no offer of counselling."
"The consultant told me my marriage would be over if I continued with the pregnancy."
Is the choice that women have fought for actually being removed from under their noses, without them realising? Is the choice to continue a pregnancy with a baby that doesn't fit the 'Gold Standards' of the 'Decision Planning Strategy for Screening' being taken from us? Have we got our eyes on the wrong ball?
Every woman in the land should be jumping up and down whatever their beliefs. For women are being failed, with devastating consequences.
The wider moral issue for me is this:
How do I explain to my daughter, when she is a grown woman herself, why there are so few adults around her with DS?
How do I explain the excited newspaper headlines that hail the new sensitive screening tests as enabling their eradication?
How do I make her believe that her voice counts the same as any other woman's, that her life is worth every bit the same as the next?
How do I make society see that she has the same rights to work, a relationship, hobbies, loves and vices as the rest of us?
That she is not cute, not simply a two dimensional musical and loving caricature, that she is never a burden, that she contributes more than she requires, that she is a multi-faceted woman.
How will I do all of that when the words and actions of so many unthinkingly assume that she is not?