Sue Boyce (Queensland, Liberal Party) Share this | Link to this | Hansard source

I am as conscious as everybody else that it is nearly Easter, but I would like to make a few brief remarks on the fact that tomorrow marks the third World Down Syndrome Day. It will be celebrated on 21 March quite deliberately—it is the 21st day of the third month and Down syndrome is in fact caused by a triplication of chromosome 21; the technical name for it is trisomy 21. This is only the third World Down Syndrome Day there has been and yet Down syndrome is one of the oldest disabilities known to humanity. It has taken a long time for the global community to come together to celebrate this day and that, in many ways, is a reflection of the very disparate treatment of people with Down syndrome in different countries.

The Down syndrome organisations of the world are the same as most groups around people with an intellectual disability: the people who have the intellectual disability are not the drivers of these organisations. The organisations are driven by parents, friends, family, academics, researchers and medical and other health professionals. There is something of an irony in the fact that a significant number of the supporters of these Down syndrome organisations see the condition of Down syndrome in itself as a deficit—as something that needs to be fixed or to be avoided. So those of us who want to celebrate with people who have Down syndrome are sometimes a little uneasy about the company that we keep.

The very first World Down Syndrome Day was in 2006 and it followed a world conference in Singapore. It was interesting to note that many of the Singaporeans who had organised and developed that conference were being brave in doing so, in attending it and in publicly admitting within their own society that they had a child with Down syndrome. They spoke generally of a very unsupportive society where disability was hidden away and where, in the main, you were ashamed to have a child with such a deficit. It was not many years ago that the same attitude prevailed in Australia and many other western countries.

A former member in this place, Senator John Herron, a former government minister and a former ambassador, said that when his first-born daughter, who had Down syndrome, was born in the 1940s, he was told, ‘Put it in a home and don’t have any more children.’ Former Senator Herron and his wife went on to have another nine children, so I am pleased see that they completely ignored the advice they had been given.

Dr Herron was also very crucial in the establishment of the Down Syndrome Association of Queensland, which has just celebrated its 31st anniversary. As an outstanding physician, Dr Herron also spent some time in Britain and assisted in ending the use of the term ‘Mongol’ to refer to people with Down syndrome. It is an example of the sort of activity that happens when you have a close experience with someone with Down syndrome. People become advocates.

Sometimes, it seems as though we have not come very far at all. The Down Syndrome Association of Queensland runs an e-group, which is an online forum. Right now, the controversies that are raging on that e-group are about rude staring at adults and children with Down syndrome and experts who have quite happily said that all those people—meaning all the people with Down syndrome—spit at other people. The parents and supporters are very briskly and rapidly saying: ‘I don’t know anyone who spits. Do you know anyone who spits?’ But these sorts of arguments go on and on. We recently had the example from the UK of a child with Down syndrome who had cosmetic surgery. This is the second example from the UK that I am aware of in about the last four or five years along these lines. We are very right to be looking at legislation that would stop people giving children of any sort cosmetic surgery. It is worse in a situation where the parents are claiming that, for this child to be accepted by others, they have to change the way the child looks and not the way the community behaves.

Down syndrome is one of the oldest known disabilities in the world. There are paintings from the 14th and 15th centuries with children portrayed as angels. Their futures are very distinctly those of children with Down syndrome. The syndrome was not described until the 1880s by John Langdon-Down, after whom it is named. Dr John Herron was one of the people who suggested that change. Unfortunately, Dr Down, in keeping with the science of his time, used racial epithets to describe a range of disabilities and thought that people with Down syndrome looked most like Mongolians. It was a term that stuck for a long time. It is unfortunate that Dr Down has been portrayed as a racist. He was a very forward-thinking man. There was shock and horror within the medical community when he went off to work at the asylum for idiots to undertake some very good research into intellectual disability. It was considered that he should have had a stellar career in the leading hospitals as a surgeon in London. He certainly does not deserve to have a negative reputation.

Probably one of the most surprising aspects of Down syndrome for me was that in 1929 the average lifespan for a person with Down syndrome was nine years. This was partly medical, because people with Down syndrome have a higher incidence of heart and respiratory problems than the general population. But it was also partly about the way that people with a disability were treated. A lot of that has been overcome. One of the myths that I would like to try to particularly overcome tonight is the idea that people with Down syndrome die young. They now live into their late sixties and beyond.

It was only in the 1980s, in fact, that the Victorian state government became the first Australian government to declare that people with Down syndrome were educable. Before that, it was quite common to have teenagers living in wards of hospitals because they had been born there, their parents had been told not to take them home and no-one quite knew what to do with them. So they stayed there. There was a group of more than 30 people like this who a very brave woman in Brisbane worked to get put into institutions where they were at least doing something rather than sitting in a ward of what was then the Chermside Hospital. That did not happen until the 1970s. Many of these families had terrible stress and trauma when they were told that they needed to do something about these children. They had been told to go home and forget about them, and some of them had done that quite deliberately. Other children within the family did not even know that these brothers and sisters existed. We have moved on a long way there. People with Down syndrome are in mainstream schools and workplaces all over Australia.

On the flipside, though, from my perspective, 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 now be offered a fairly simple test to discover if the foetus that they are carrying has indicators of Down syndrome. These women who have a positive test result are offered a termination. Choice is an excellent thing. I do not know that guided choice is such a good thing. Sadly from my perspective, 70 per cent to 90 per cent of them will accept the offer for a termination. It is my view that the world is a much poorer place without people with Down syndrome. The view of the Down Syndrome Association, which has been adopted as a national policy position statement on this subject, is that Down syndrome is not in itself a reason for termination. Couples can choose to terminate for whatever reason, but Down syndrome should not of itself be a reason, and nor should it be put to parents by genetic councillors as a reason, to terminate the birth of a child.

We should forget all the stereotypes about people with Down syndrome, too. They are not all very loving. All the people with Down syndrome that I know love music and dancing. But, when I think about it, the majority of people I know without Down syndrome love music and dancing, too. Most people with Down syndrome demonstrate ingenuousness and an ability to cut through to the basic humanity of things to get to the truth and to the things that enrich their world. The theme for this year’s World Down Syndrome Day is ‘Aim high enough’. We owe it to ourselves to ensure that we do aim high enough all the time to support people with Down syndrome into the mainstream in our society.