Sunday, 8 July 2018

A golden thread

On Wednesday I attended a wonderful service in Llandaff Cathedral marking 70 years since the founding of the NHS. We should definitely celebrate our NHS! The passion and dedication of doctors and healthcare workers helps give better outcomes for more people at a lowercost than in many similar countries. Along with medical advances, this has helped our average life expectancy go up by about 15 years since the NHS was founded.

But are these technological advances always positive? There is a moral dimension to healthcare, and choices that have to be made. Should we focus on treating those who are sick or injured? Should we spend more on prevention, or on therapies for long-term conditions? There are also ethical choices around end of life, and start of life.

I was with some friends one evening recently. For some reason we got onto talking about the new screening test that has been introduced to the NHS in Wales. It’s called NIPT - non-invasive pre-natal testing. It’s an early genetic screening for certain genetic differences including Down’s Syndrome, from a blood test, instead of the invasive amniocentesis which can increase the risk of miscarriage.

Wales is the first part of the UK where this test has been made available on the NHS, just a few weeks ago. It was introduced in Iceland in the early 2000s and is taken in 85% of the pregnancies where it is offered. The vast majority of those who receive a positive result choose to terminate, meaning that only one or two babies with Down’s Syndrome are born in Iceland each year. 

I know loads of wonderful children and young adults who have Down’s Syndrome, including several of Immy’s best friends at school. Although their families have lots of extra challenges to deal with, they are each valued and loved, and just as full of life, love and potential as any other child I know.

As I said, I was with some friends talking about this and I asked the question: ‘’if so many of us choose to terminate a pregnancy when we discover the embryo has a genetic abnormality, are we in fact saying we value people with disabilities less?” One person was honest and said, “yes, I suppose we do”. We subscribe in principle to the idea of equal rights for disabled people, but not if it’s going to cost us personally. We are horrified by the stories of shocking treatment of disabled adults hidden in our society today, but are we prepared to pool more of our resources to make sure people are safe? We are sickened by the eugenic purges of the fascists – the cruelty and human suffering are unbearable to think about.  But surely the end result to our society of selective terminations is similar. 

Time and again I hear stories of expectant parents and those whose child receives a diagnosis being confronted only with the potential problems they are likely to encounter. It’s odd really as we all meet problems in our lives, but nobody pointed this out when my son was born without any obvious difficulties. 

What goes through your head when you receive a diagnosis of a long-term condition? I can tell you some of what went through my head when I learned that Immy had cerebral palsy: How am I going to cope with no extended family around? Will my precious baby girl make friends and ever be independent? Will she be happy? What happens when I’m not around anymore? How will other people treat us? I’m certainly not going to judge someone for the choices they make, based on the information in front of them and the way it’s presented, as well as very legitimate worries about the future.

I was shocked but also grateful for the honesty of my friend. In fact I recognise powerful competing instincts inside myself. On the one hand I have a deep-rooted, instinctive fear of anyone who looks very different, and acts alarmingly or threateningly. At the less extreme end this instinct makes me want to hang out with people that are similar to me – I feel comfortable and at ease. But I also have instincts that make me want to put myself out and help those that are suffering. We shouldn’t be surprised by this – the same tensions are everywhere in the natural world around us.

That tension also runs through the diverse texts that make up our Bible - the Hebrew Scriptures and Greek New Testament. I’m not a biblical scholar but I have read the Bible many times, and I find two threads running through. The first is the narrative of the chosen people, those who are called into the special favour of God, and contrasted with the wickedness in the world around them, which has to be smashed and rooted out. 

I’m often puzzled about how as churches we split and fragment around doctrine and practice, in stark contrast to Jesus’s command to be One. I’m puzzled by how as Christians we can justify turning our noses up and our backs around on others in need and letting our personal interests take centre stage. Perhaps it’s because we focus too much on this narrative thread. 

But there’s another golden thread that runs right through the scriptures - that God judges his people on how they treat their most vulnerable.  We read it time and again through the stories of the Old Testament, and in the writings of the prophets. And nowhere is this more evident than in the teachings and practical actions of Jesus himself. 

The story of the banquet reminds us that God chooses those who are weak, those with disabilities, those cast aside by others, to join him in the best seats at the top of the table in his upside-down kingdom.  We read that it was by bringing himself low through suffering that Jesus was raised to the highest place.

And actually I think these two threads twist together in this way - Yes, I am chosen, precious and called - but I am called to be different, to be the stinging and healing salt in the wounds of the world, the bright light shining into the dark corners of hypocrisy, greed, fear and laziness. I am called to love, as I am loved. A unique feature of our Christian faith is the central principle that we do not earn God’s favour through our efforts. Instead we act in sacrificial love as a response to the favour shown to us.  This is grace - the free gift of God’s love. We don’t earn it, nor do we deserve a healthy, prosperous, easy life. For those of us to whom a lot has been given, a lot is expected. As humans we have a tendency to pull the ladder up behind us, forgetting how much sacrifice has gone into bringing us safely to this point. “Remember you were slaves and strangers in Egypt” God says repeatedly to the Israelites. “Freely you have received. Freely give” said Jesus. 

So I’m saddened that we can now easily identify people with genetic differences before they are born. Partly because it worries me where this might eventually lead and who else we might try to eliminate, but mainly because a world without people with genetic differences and disabilities is a colourless, competitive one in which we blunt our instincts to pool our resources and care. It’s a sad world for all of us. Instead I think we should be offering more reassurance and long-term support to ensure that all families are able to thrive.

I am called, not to walk by on the other side of the road when I see someone suffering because I can think of a hundred good reasons not to stop and help. I am called to put myself out in the service of others. I am called to consciously over-ride my instinct to distrust those that are different, and to strengthen - through exercise - my instinct to care. So help me God.