Down's Syndrome

By John Freeman

| 25 October 2016

Over the years, there has been a shift in the language from ‘handicapped' to ‘disabled' and (not universally) ‘differently abled'. I'm fully in support of this - children do have different abilities and some of these fall within the so-called ‘normal' range and some fall outside. I've been watching the debate about Down's Syndrome with great interest, in the contexts of Sally Phillips' television programme and the NHS improved screening programme. Sheila, my wife, works part-time for ‘Wings', a special needs support charity that works with families of children who have Down's Syndrome, and that's also affected my thinking.

But to start with, I'll take two examples outside of Down's Syndrome: Autistic spectrum disorder, which is not really a spectrum of disorders from mild to severe, as there are all sorts of symptoms that fit within the overall label that are not on a linear progression. But there is a wide range, from people who can live ordinary, and sometimes extraordinary, lives with minimal or no support, to those who require 24-hour assistance. Dyslexia, similarly, can be both enabling and disabling - the list of entrepreneurs with a background of dyslexia leads me to believe that there must be some link between dyslexia and enterprise, even if I can't see what it is. (Richard Branson, Charles Schwab, Craig McCaw, David Neeleman, John Chambers, Paul Orfalea - all very successful; look them up if you don't believe me or know them) [from Malcolm Gladwell's ‘David and Goliath' - well worth reading!]. So is dyslexia enabling or disabling, or, variously, both?

So where do I stand on Down's Syndrome?

Parents who have a child with Down's Syndrome - and I have known more than a few, and Sally Phillips is typical in this - speak uniformly warmly about the character and love of, and for, their children, and the deep rewards of having such a child in the family. This is, I'm sure, a real effect, and particularly heart-warming. However, parents inevitably get older and children reach adolescence and then adulthood, and adults with Down's Syndrome perhaps do not have such an easy life, mostly requiring long-term external support.

I'm clear, though, that we, society, should make sure that parents with children who have Down's Syndrome, and the children themselves, should be supported throughout their lives so that they have as fulfilling a life as they possibly can. This is expensive but is, in my view, a duty of common humanity. I also believe that neither children nor adults with Down's Syndrome should be excluded from ‘ordinary' society - it seems obvious to me that the fear of ‘the other' is exacerbated by simple lack of knowledge and experience. The road of exclusion and separation too easily takes you back to the days of asylums and Bedlam. But the realities are not perhaps as utopian as I would wish.

Where I am less convinced is in the areas of testing and abortion. I think that if a test is available, whether it be for Down's Syndrome or anything else, parents-to-be should be free to use it and to learn about their child, and, subject to safeguards, to choose to terminate the pregnancy depending on what they find out. I accept that this will always be a heart-wrenching decision - and whichever way it is made, there may be long-term regrets.

The safeguards I mention - as society we would surely not want parents to be able to abort a foetus because it will not be intelligent enough, or won't have the right colour eyes, or will be dyslexic. That leads to a really complex and difficult agenda and it is really difficult to see how best to find a way through. The courts are clearly not the right place to start - and the law itself is a blunt instrument.

I'm genuinely torn on this. My personal thinking, and it can only be that, is that if the new test had been available when Sheila and I were having children, we would have chosen to abort - not because we didn't believe that the child would have a loving childhood, but because the longer-term prospects were not good. But even then, I don't know.

Going back to Sally Phillips' argument that this is an issue around diversity, and that we should welcome and embrace diversity, while broadly I agree, more narrowly I fundamentally disagree. There are some developmental problems which are so severe that that I can't see any humane world forcing children to endure them.

The problem - and it's a problem that is moral and ethical, and if you are religious, a religious question - is where and how do you draw any line at all. I just don't know, and I can only speak for myself for the decisions that I would have taken. We all have to take our own decisions, and live with them, while respecting those of others.

That, of course, should be true of everything we do - I'm driving in a hurry, shall I speed (and put lives at risk)? I need some money, shall I evict my tenant (and make a family homeless)? I want to win the race - shall I take drugs (and reap the rewards without the effort)? I want to pass the examination - shall I cheat (I could have worked harder, but I know I could pass)?  Everything we do has both a pragmatic and a moral  dimension.

Life isn't easy.

John Freeman CBE is a former director of children's services and is now a freelance consultant

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