Simon Crompton
Attend an evening with Andre Agassi
In a week of gloomy reports about rape, murder and hostage-taking, news that more Down's syndrome babies are being born in the UK because of enlightened attitudes about disability provided a glimmer of optimism.
The story was based on statistics from the National Down's Syndrome Cytogenic Register, which showed that, although the number of babies born with the condition fell between 1989 and 2000, Down's births rose by 15 per cent after that - even though antenatal testing, and the opportunity for termination, became more easily available.
Using this finding, the Down's Syndrome Association consulted parents who had opted to continue with their pregnancy despite positive tests. A third felt able to go through with the pregnancy because society offered good opportunities for people with Down's syndrome. Even the Down's Syndrome Association expressed pleasant surprise that so many thought their children had a bright future.
There are two ways of looking at this story. The first is to pick holes in it. Nothing to get excited about, harumphed the Department of Health, via its NHS Choices website, pointing out that the increase in Down's births was actually quite small, given that more women are having babies later in life when the chances of having a Down's child are greater. And then there was yesterday's British Medical Journal paper, reporting that widespread screening in Denmark has actually reduced the number of babies born with Down's in that country.
But there's the other way of looking at it, which takes the story on its own terms. There are now a lot of people in the UK who believe that children with Down's syndrome are not “abnormal”, and that they have a much better chance of living a good- quality life than they had 20 years ago. This isn't just about changed attitudes, but about the facilities available to allow people born with a potentially disabling condition have a good-quality life
This is a very different world from the 1980s, when the word “mongol” was still commonly used. In my first job, working for a publication called Disability Now in the Eighties, I remember how the smallest positive mention of people with Down's in the media was noted with excitement. Now people with Down's syndrome are regularly featured in EastEnders and TV dramas such as Mark Haddon's Coming Down the Mountain. They are in mainstream schools, and holding down jobs. Such exposure has helped to make a congenital condition less of a “disability” and more of one hue on the spectrum of humanity.
The Down's Syndrome Association, along with Mencap, has been instrumental in this change - by putting the emphasis on changing attitudes, facilities and support in society. It's done this to the deliberate exclusion of research into the causes of learning disability, on the basis that it had to send out a clear message about the worth of people affected. This could be undercut by funding research aimed at preventing their existence. The strategy seems to be having results.
Clearly, not every charity for disabling conditions has similar priorities. Each has a contentious balancing act to perform between investing in screening for and preventing the condition, and providing support services and public education that improves the quality of life of those affected. But with giddying amounts being spent on research into stem cell and other therapies and new diagnostic tests for congenital conditions, the Down's story is a reminder that sometimes we can get too carried away with the science of prevention, forgetting that some conditions are only severely disabling because we're not investing enough in supporting families affected by them.
Sometimes science isn't everything. In the case of Down's syndrome, if our attitudes changed and our support services were up to scratch, much of it would be simply unnecessary.
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