A Day Of Celebration

From the Courier Mail 

Senator Sue Boyce
March 20, 2008 12:01am

THERE seem to be dozens of “days” in every week these days, marking everything from arthritis to Zen Buddhism.

But, for purely selfish reasons, one that I hope will cut through is World Down Syndrome Day, celebrated tomorrow.
The date, the 21st of the third, was chosen to reflect the fact that Down syndrome (Trisomy 21) is caused by a triplication of chromosome 21.

This year’s WDSD is only the third. It has taken a long time for the global community formed around Down syndrome to come together.

As with most groups around intellectual disability, the drivers are not the people themselves. The drivers are parents, academics, researchers, medical and other health professionals.

And there’s something of an irony in that a significant proportion of these “supporters” see the condition of Down syndrome as a deficit, as something to be fixed or avoided.

Those of us who want to celebrate with those people who have Down syndrome are sometimes a little uneasy with the company we keep.

The first World Down Syndrome Day followed an international conference in Singapore in 2006.

Many Singaporeans who attended that conference were being brave in doing so. They spoke of a generally unsupportive society where disability was often hidden away.

It’s not many years ago that the same attitude prevailed in Australia and other Western countries.

Former senator and ambassador Dr John Herron says he was told to put his first-born in a home and not have any more children when she was born with Down syndrome in the 1940s.

He went on not only to have another nine children but to assist in the establishment of the Down Syndrome Association of Queensland in 1977 and to encourage the British (and international) medical community to drop the descriptor “mongolism”, replacing it with Down syndrome.

Sometimes it doesn’t seem that we have come so far. The DSAQ e-group has been raging recently with stories of dealing with “rude staring” at people with Down syndrome and experts with the view that “they” (children with DS) all spit at others.

Down syndrome is one of the oldest known disabilities in the world. There are paintings from the 14th and 15th centuries clearly depicting children with DS, often portrayed as angels.

But it was not until the 1880s that English physician Dr John Langdon Down described the characteristics of the syndrome that bears his name.

Down unfortunately used race epithets to describe the conditions he noted, seeing people with Down syndrome as like “Mongols”. It has been popular to decry Down as racist, but not to be racist would have been more unusual in 19th-century Britain.

In 1929, the average life span of people with Down syndrome was nine years. There continues to be a higher incidence of heart and respiratory problems but these are not the killers they once were. The average life span of people with Down syndrome in Australia is now in the late 60s.

It was the 1980s before the Victorian Government was the first in Australia to declare that people with Down syndrome were “educable”.

People with Down syndrome in mainstream schools and workplaces all over Australia have aimed high and come a long way since then.

On the flip side, there have also been scientific developments that mean people with Down syndrome are less likely to be born at all.

Most pregnant women in developed countries will be offered a simple test to discover if the fetus they’re carrying has Down syndrome indicators. Those who have a positive test will be offered a termination and, sadly from my perspective, most – 70 per cent to 90 per cent – will accept that offer.

The world would be a much, much poorer place without people with Down syndrome. Forget the stereotypes – they aren’t “all so loving” and while all the people with Down syndrome I know “really enjoy music and dancing” so do most of the non-DS people I know.

But most people with Down syndrome I know demonstrate an ingenuousness, an ability to cut through to the basic humanity of others and a delight in simple things that enriches my world and the world of everyone who knows them.

The theme chosen for this year’s World Down Syndrome Day is “Aim High Enough”.

It’s from a piece of advice that an old villager gave Langdon Down and that he passed on to his medical students: “My lad, you take your aim; be sure you aim high enough. That’s the thing – aim high enough.”

As a society, we owe it to ourselves to ensure that we are never satisfied that we have aimed high enough in supporting people with Down syndrome into the mainstream.

Senator Sue Boyce is a Liberal Senator for Queensland and has an adult daughter with Down syndrome.