OPINION: When Celebrities Suffer
By Michael Cook

Published        10/14/2004

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: [log in to unmask]

SOURCE: Tech Central Station, Oct 14, 2004
http://www.techcentralstation.com/101404E.html

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