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Wednesday, 21 March 2012
Page: 2426


Senator BOYCE (Queensland) (13:00): Today, 21 March, is World Down Syndrome Day. It was a specially chosen day because Down syndrome is caused by the triplication of—having three; not the usual two—chromosome 21. It is the seventh anniversary of World Down Syndrome Day but it is the first time that it has been a formally UN auspiced day. The UN is today holding a seminar in New York with the theme 'Building our future'. One of the speakers at that seminar is a young Australian woman with Down syndrome called Shona Robertson. Shona is in her early thirties and her conversation will be on 'My life, my education'. It is not a coincidence that her mother is a well-recognised special education teacher and a fierce advocate for educational inclusion.

A lot of people said to me last year, when we were advocating to have World Down Syndrome Day recognised as a UN day, 'What do we need another day for?' They might very well ask that—today we are all wearing orange ribbons because it is also Harmony Day—but the World Down Syndrome Day resolution moved in the United Nations was put forward by 78 countries. There are 192 countries in the UN. We need to get to those other 120 countries which were not involved in the development of the day—a suggestion first put by Brazil. The UN auspice of this means that it is truly a day, now, for global awareness of Down syndrome. It means that in some countries there will now be funding and recognition of Down syndrome that has not existed in the past.

It is estimated that there are about seven million people worldwide with Down syndrome. Certainly in Australia, people with Down syndrome live comparatively good lives—well-recognised, socially integrated lives. I would like to recognise Miss Ruth Faragher, who is in the gallery this afternoon, who is one of those people. Ruth and her parents and some other people from the Down Syndrome Association of the ACT have come along, including David from the Confident Speakers Group with the DSA ACT. Ruth is one of the members of the Confident Speakers Group and I can tell you that she is a very confident speaker.

I am quite pleased also that others were not able to come because they are at work. This is something that would not have happened many years ago. We still have a lot of work to do in Australia in terms of inclusive education and recognising the particular health needs of people with intellectual disability, and in terms of the number of illegal and forced sterilizations that appear to be continuing to happen. Mr Graeme Innes from the Human Rights Commission is working on that area.

The other area that I think we need to pause and think about is genetic testing. Certainly it is the view of the Down Syndrome Association of Queensland, of which I am a proud member, that the diagnosis of Down syndrome is not, in itself, a reason to terminate a pregnancy. It is interesting that research done in Wales, Britain, titled Wrongful deaths and rightful lives, shows that genetic testing and the resultant termination of foetuses with Down syndrome probably reduces the annual live births of babies with Down syndrome by about 660 a year but it also leads to the loss of 400 babies without Down syndrome. We certainly do not have the tests right, and to assume that an intellectual disability is a reason to terminate a pregnancy is not, in my view, a rational way to go about genetic testing.

These are the issues that we face in Australia. In many countries around the world there are still people with Down syndrome who are hidden away in the way that perhaps some people remember happening 50 or 60 years ago in Australia. There are still families that feel shame because of the existence of a child with Down syndrome. I remember, at an international conference in Singapore, the number of local parents who were so grateful to the people from other countries who were there going about publicly and behaving like families with their children with Down syndrome, when these local families were cautious about the public exposure that they allowed their children to have because of the stigma around it.

There are also people with Down syndrome, particularly women, who are being sold into slavery and sex trafficking around the world. If you have a country that has a low view of women—a country that puts that sort of value on them—then you can see that a woman with a disability is at an even greater disadvantage.

I would like to conclude by pointing out that whilst it is Harmony Day we do not have any ribbons for Down Syndrome Day. I would like to encourage the state Down syndrome organisations to revisit the idea of developing a national organisation so that they have a national voice here and elsewhere. There was a national organisation that failed some years ago—back in the nineties—and I think it is time that the state organisations moved past that and worked at truly developing a national organisation so that they can develop national awareness of Down syndrome. I would like to wish everybody associated with the disability sector a happy World Down Syndrome Day.