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Tuesday, 24 September 2002
Page: 7127


Mr MURPHY (6:23 PM) —In response to the Attorney-General's comments in relation to the amendments, I have to say again that the amendments proposed by the member for Mitchell totally paralyse the prospect of commercial reward being secured by the scientists—and the big businesses promoting the scientists—in terms of embryonic stem cell research. I am very grateful to Mr David Brice from the Physical Disability Council of New South Wales, who has provided me with a partial copy of a transcript from Sandy McCutcheon's Perspectiveprogram of 5 September, for which Mr Erik Leipoldt prepared a piece. Erik Leipoldt is a PhD student in Human Services at Edith Cowan University, Perth. He is also former Executive Officer of People With Disabilities in Western Australia and former Chair of the Disability Services Advisory Committee in Western Australia. He has been a quadriplegic for almost 25 years. What he has to say is very powerful. It reads, inter alia:

Good evening.

In recent weeks, the corridors and offices of the Federal Parliament have been the site of some emotion-charged speeches about the potential benefits of embryonic stem cell research on eradicating various forms of disability and disease.

... ... ...

At the highest political level and in senior scientific circles, we have been told first hand stories of the tragic situation faced by people with disabilities.

Leading politicians blinked away tears in Parliament.

We've seen TV images of other politicians visiting people with spinal cord injuries.

And there were scientists making amazing, enticing promises for cure just so long as we could legalise embryonic stem cell research to help these unfortunates.

But, in all my years of involvement in advocacy, in disability services and on government disability advisory groups I have never encountered this emotional concern on the part of most of these people about the day-to-day needs of those of us with disabilities.

At times, I must say, quite the contrary. Meanwhile, many disability problems remain unresolved.

Even in our wealthy society, disability advocacy is still extremely necessary.

People with disabilities still face isolation from mainstream education, employment and community life.

But I found it offensive to see disability being used as a lobbying tool for the biotech industry.

What's going on with all the tears and pleading?

Clearly, politicians are not intending to suddenly make a big effort on outstanding issues facing people living with disabilities now.

No, some ride the public fear of human fragility and disability as a means to their far more lowly profiled agenda—that of potential profits. Profits from the ethically controversial and potential $70 Billion embryonic stem cell research industry. After all, the public is less likely to merely support private profits. But it will support a cure for the secret horror of their dreams: disability and mental and physical decline.

... ... ...

The amount of public money being poured into some of this research is huge.

When we now weigh the scales with these vast financial interests on one side and the real interests of Australians with disability on the other we hear a heavy thump. This is not the sound of altruism.

And it is costing people with disabilities.

We had arrived, I thought, at some understanding that disability is not just created through impairment. Our collective social values and attitudes create much of the disability experience. And changing them does not involve ethically contentious action.

Now, the embryonic stem cell lobby is shamelessly sacrificing these hard-won gains for profit, reminiscent of tear-jerk fundraising by charities of old. We're back to `disability as tragedy', a condition to be pitied and cured. [This attitude stymies the acceptance of people with disability as valued community members and hinders a healthier accommodation of disability in our own minds.]

As a person who has lived with quadriplegia for almost 25 years, I have a mandate to protest.

In this debate, the public, people with disabilities included of course, should beware of politicians and scientists bearing gifts.

The embryonic stem cell lobby's ethically questionable treatment of this debate alone puts its ends in a dubious light. It makes for a shaky platform for the respectful treatment of either embryos or people with disabilities. [Disability being part of the human condition, all of us should be concerned about that.]

This is a cry from the heart from Mr Leipoldt, who is severely disabled himself. I am very happy to voice his concerns in this House. Truthfully, he understands that this research is purely speculative and is being driven by the commercial and economic agenda of the scientists and those backing them, in the name of making a lot of money. Quite candidly, Mr Leipoldt has no confidence in this bill. (Time expired)