A new perspective on disability (from the Times (UK)

[Guest guest]

A new perspective on disability

We need facilities available to allow people born with a potentially

disabling condition to have a good-quality life

Simon Crompton

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.

http://women.timesonline.co.uk/tol/life_and_style/women/body_and_soul/article5250815.ece