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| Ragged Edge EXTRA!
"Reeve gets superhero's welcome at fundraiser" from the Jan. 29 Sydney Morning Herald |
Of victims and heroes:
Last November the Australian Federal Parliament decided to allow embryonic stem cell research. Many thousands of "left-over" embryos are kept in frozen storage as a result of IVF procedures, so there is an immediate supply of embryos for research purposes. The debate mainly covered the unethical practice of tampering with human life on the one hand and utilitarian arguments about using "otherwise discarded" embryos on the other. One side talked about embryos, another about clumps of cells, thus flagging where they stood in terms of what was human and what was not. Some disability groups spoke to to a Parliamentary Committee, supporting stem cell research technology for cure. Few opposing views from the disability area were heard. Reportedly, the ESCR industry is potentially worth some AUS$70 billion. Some Australian states were therefore very interested in attracting a future piece of this industry. Premier Bob Carr of New South Wales stands out. Last year he transformed from a Premier of a state that still institutionalises people with developmental disability (and has seen a number of reports of serious abuses in these places) to an emotional and compassionate "advocate" for people with disabilities and their "cure". Carr focused on spinal cord injury. (After all, you cannot cure developmental disability.) The media showed him visiting people with spinal cord injuries. He took a 2-year old quadriplegic and his parents to Parliament when it debated ESCR. He wanted legislation passed allowing ESCR, he said, so that people could be cured from these tragedies. The public witnessed tears and pleading in Parliament, and loved it. An alternative disability voice was hardly heard. New South Wales state elections are coming up and Carr is in full election-mode right now. Cleverly, he invited "Superman" Cristopher Reeve to fly in to attend a state-sponsored Spinal Forum. The Forum paid Reeve a US$75,000 speaker's fee from the public purse, but forgot to offer funds to bring in disabled Australians with alternative views to make presentations at the Forum, so the Forum had Carr and Reeve as the sole keynote speakers about the promises of ESCR. Reportedly scientists and people with disabilities were brought together at this event so that the scientists could meet the "real people" they were going to bat for. A few local NSW disability groups even came out in tacit support for the Spinal Forum, in the hope of changing the event to include a message of social inclusion. Predicably, though, any such message has been smothered with Superman"s heavy cape of cure. Reeve has dominated the Australian media from the moment his plane landed to push his unfettered-research-for-cure message. Alternative disability voices did not make the mainstream media. Reeve urged the Australians to abandon their 3-year moratorium on ESCR use for human cloning (the moratorium is in the ESCR Act of November 2002), insisting that it is another promising technique for cure. He appears as oblivious of the ethically controversial nature of ESCR as a vehicle to (his) cure as he appears to be of the adverse consequences on the status of people with disabilities caused by his "heroics". Carr got two benefits out of all this. First, he gained an unassailable media profile during his election campaign: Super Compassionate Carr with Heroic Superman. Second, his New South Wales has probably now become a more obvious place for scientists and business interests to look to set up their ESCR labs. But people with disabilities are paying a heavy price. The Australian disability movement has fought for decades to be included "as-we-are." We thought we had made some headway here. But when Christopher Reeve flies back to the USA this week, he leaves behind people with disabilities who are once more cast into a medical model of "disability as tragedy". We are left, again publicly cast as victims of our impairments -- unless, of course, we become heroic enough to deny our disability and spend all our energies on its cure, like Superman. And long after Carr is re-elected, as he surely will be, the many social causes of disability will undoubtedly still be waiting for attention. There is a lot more that is unethical about the Australian ESCR lobby than meets the eye. But the media and the public do not want to know: after all, if we can get "them" cured, we don"t have to care. Erik Leipoldt is completing his PhD study of disability perspective and the issues of euthanasia and physician-assisted suicide at Edith Cowan University in Perth, Australia. He has been a quadriplegic for 25 years. Posted Jan. 29, 2003 Read "Christopher Reeve and Bob Carr dehumanise disability - stem cell research not the best solution" in On Line Opinion
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