Sunday 7 February 2016

Genocide in the UK

I understand that Denmark expects to have eradicated Down Syndrome from births within its borders by 2030. Iceland is in a similar situation. This is through a programme of screening followed by abortion. As the non-invasive screening procedures become more and more efficient, this situation is likely to become the norm in other western countries too. 

It makes sense. Economically, the screening process pays for itself - each birth of a human being with Down Syndrome (or other detectable congenital problem) that is avoided makes a saving which more than pays for the screening of thousands of mothers and for the resultant terminations. Parents want babies who will be whole and healthy, able at school, able to do well in their careers, fit to take pride in, and perhaps to carry the family forward and be a support in old age. Governments want the same; not only are babies with chromosomal abnormalities a burden on health services at the beginning of their lives (and often throughout), but very few of them will ever be significant tax payers, let alone higher rate. In the world of the market, there is no case to answer: all sides benefit from being able to choose not to have abnormal babies. 

My own two children are perfect. They are immensely beautiful, stunningly intelligent, socially charming, brilliant in conversation. My daughter, after successfully working in publishing, has brought three equally amazing future tax payers into the world. My son is not yet a dad; he is a high earner, with a new job which gives him a role on an international stage when it comes to combatting some of the greatest evils facing the world today. I am proud of my two, and, to be honest, thankful that they are the way they are. Furthermore, and being brutally frank, I am not sure how I would have coped with them having major developmental issues, and I am grateful not to have faced that challenge. 

And yet... I have friends. I have friends who have children with various kinds of chromosomal and other congenital abnormalities. All through my life I have known such families. I think we probably all do - these things are common enough for us all to be aware of the issue. Some of the parents I have known have been exceptionally able, leading figures. Others would have regarded themselves as very ordinary people. All, without exception, have shown fierce love and protectiveness to all their children. And I have seen special joy and satisfaction and a tender radiance of love in the relationship with children where there is a genetic problem. This is especially in the case of Down Syndrome, but in others too. 

I was prompted to write because of two families. Both I know slightly rather than deeply. The daughter of one family has Down Syndrome, and I know they have passed through many periods of extreme health worries with her. She has recently left the family home and is living in her own place, though she does have her parents and others round to dinner sometimes. Her part-time hair salon job and her independence give incredible satisfaction to her mum and dad, which I suspect my own son will only deliver if he really does become prime minister. ;-)

The other family are Facebook friends through my work as a wedding photographer. I see their pictures of their own little girl frequently. She has very serious health problems - a different chromosomal issue than Down Syndrome, leading to significantly graver issues. She can't see, and I don't know what reactions she shows or will ever show to those around her. She is growing very, very slowly, and I understand that survival prospects beyond a year are not good. I guess she costs a lot in terms of NHS care. 

What is displayed before me every week in the pictures of that little girl is such love and tenderness, such concern and protection, such honouring of her status as one of the frailest human beings who has ever come into the light on our planet, that I cannot look without tears and thankfulness and prayers for the family. I am quite sure they have pain and heartache, and yet what I see most through them is love and joy. They challenge me daily and the contact with them makes a significant difference to the way I see life and people. 

Neither of these children - the baby and the young adult - would be here today if their parents had been screened effectively and had aborted them. Both have cost the tax payer a lot of money. Efficiency has not been well-served. And don't we want everything to be perfect? Why let the imperfect in? 

In a conversation about safety in the workplace this week, I heard of a man whose face was badly damaged in an industrial accident when a crane shackle snapped and the cable whipped him. His wife left him. Of course she did - for in our society of apparently attainable perfection, who needs to love that which is not perfect? 

Of course, this world is not perfect. My own children are not actually perfect, strange to say. Oh, they are healthy and bright and look alright, but those actually aren't the biggest things, are they? My relationship with them has gone through some depths of howling misery when in one way or another we have disappointed or hurt each other - especially my own behaviour which has caused appalling pain. Our love for each other has been challenged by each serious imperfection - and burns brighter as a result. For love isn't about perfection or achievement at all, is it? I don't actually love them because they are cute and smart - nor they, me, praise God! I am glad when they do well or have influence, but my joy in them is about just being together, talking, a hug, enjoying a gig or a car journey, not about being winners and prime ministers. Nothing they do can top them just being them. 

When the prenatal screening process is truly perfect, when the genocide really is 100%, when we never have to look again on a child with a chromosomal abnormality or congenital defect, who then will show us the extraordinarily beautiful love and tenderness of my friends to their little scrap of a daughter? Who then will model parental love to the imperfect, damaged, not-as-he-"ought"-to-be child? Who will move me to tears by seeing beauty and dignity where others see only damage and a drain on resources? Whose births will serve as perpetual reminders to our society that, for all our technology and medical brilliance, this world is not perfect, and that there are bigger issues than beauty and wealth creation, and that God sends some people into this world simply to be loved, not killed in the womb, and THAT is their contribution?



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The pictures above are not related directly to any of the families whose stories I touch on.  However, while looking for a few images marked as "labelled for reuse" I came across the above image of a mother and her baby. The family's story is here, and says more beautifully than I can what I have tried to say in this blog.

Amongst the "exceptionally able, leading figures" amongst parents I had in mind above is David Potter, who I have known for 40 years. He writes about his daughter Rachel here, and you can hear him speak a little about Prospects, the organisation he founded, here.

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