TCS Daily


When Celebrities Suffer

By Michael Cook - October 14, 2004 12:00 AM

Why are we rushing to canonize Christopher Reeve? To presidential hopeful John Kerry, the quadriplegic actor was "truly America's hero". As far away as Australia, he was "the most impressive person I have ever met" for one of that country's leading politicians. Even President Bush paid tribute to his "personal courage, optimism, and self-determination".

No one questions the bravery, intelligence and iron will of a man who had to struggle even to breathe without a ventilator. And his global recognition as the face of disability was unparalleled. But there is a down side. His almost fanatical determination to walk again could end up burdening Californians with a huge debt, hampering the development of medical research, and injuring the cause of the disabled.

First, consider his impact on the economy. When Americans go to the polls in November's election, there will be more at stake than politicians' jobs.

Voters in California will be deciding the fate of Proposition 71, a proposal to spend US$3 billion over 10 years on stem cell research. At the moment, with the finances of the world's fifth largest economy looking quite wobbly, the prospect of paying back US$6 billion over 30 years makes a Yes vote uncertain.

But a wave of nostalgic sympathy for Reeve could push it over the line.

Perhaps inspired by his efforts, suffering celebrities with money to burn are agitating for embryo research.

There's sit-com star Mary Tyler Moore, who has diabetes and claims that embryo research is needed to cure diabetes. There's Michael J. Fox, who has Parkinson's disease. He featured in an advertisement this month for the Kerry campaign, pleading for federal funding for embryonic stem cell research. There's Michael J. Kinsley, former boy wonder editor of the New Republic and Microsoft's internet magazine Slate. He has early-onset Parkinson's disease and uses his columns to spray opponents of embryo research with caustic abuse.

Proposition 71 was the brainchild of Tinsel Town celebrities Douglas Wick, a producer of "Gladiator", Jerry Zucker, director of "Ghost", and his wife Janet, a producer. They have children with juvenile diabetes and believe that therapeutic cloning will cure them.

Unfortunately, if a cure for diabetes ever does emerge from therapeutic cloning, it is likely to be so expensive that only the children of the glitterati will be able to afford them. The taxes of the Californian poor will end up paying for research for the rich.

Second, celebrity disabilities fail to offer rational criteria for allocating medical research funding. One of the ironies of Reeve's plight was that his last role before his accident was playing a cop paralyzed by a stray bullet in the 1995 film "Above Suspicion". To understand his role better, he actually visited a spinal cord trauma unit in Van Nuys, California. So he knew about paralysis, but it was only when he himself was confined to a wheelchair that he took an interest in spinal injuries.

From then on, Reeve dedicated himself to lobbying for destructive research on embryos. He was absolutely convinced that only the versatility of embryonic stem cells could guarantee a cure for spinal cord injuries. Hundreds of thousands of people would die unless research began as soon as possible, he told the US Congress in a blaze of publicity.

According to prominent US bioethicist Arthur Caplan, Hollywood activism is upsetting priorities in medical research. "The problem with celebrity fundraising is simply that it is not fair," Caplan writes. "Celebrities who try to lobby Congress sometimes don't know the science well enough to know what is the best way to spend the nation's research budget. So the budget can get distorted and some people with real diseases that have a real shot at a cure if only the money were spent on them lose out." Besides, some distressing ailments are too "uncool" to attract support. "It is hard to imagine J-Lo or Jennifer Anniston leading a march on Washington to demand more research on urinary incontinence," quips Caplan.

And third, the tub-thumping of Reeve and other suffering celebrities have muffled dissenting voices amongst the disabled. Reeve's visit to Sydney last year was not greeted enthusiastically. Stem cells?, asked quadriplegics Erik Leipoldt and Maurice Corcoran. What about wheelchair ramps? What makes the lives of quadriplegics so difficult is "inadequate support services, de-humanising institutions, high levels of unemployment and exclusion from regular education" -- not restrictions on scientific research.

Some Australian and American activists were horrified by his focus on embryonic stem cells and therapeutic cloning. Take Joni Eareckson Tada, an American woman who broke her neck in a diving accident 35 years ago. She has all of Reeve's eloquence and courage -- but not his money and star status. Unlike Reeve, she is campaigning against embryo research.

"I find it shameful that some of my associates with disabilities are using their physical impairment as a plea to promote research cloning, and I am offended that words like 'helpless victim' and 'being trapped in a useless body' are used to sway the sympathies of legislators," she said recently.

Canonization ought to be the result of a long and exacting examination of a life journey. Before we put a halo on the Man of Steel, let's see whether his legacy is enduring and positive.

Michael Cook is the editor of BioEdge, an Australian-based international email newsletter on bioethics. Email: mcook@australasianbioethics.org


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