Star Power and Suffering Children

Two-year-old Arya Eng is as cute as can be -- and getting weaker every day. Arya has spinal muscular atrophy, which causes muscle weakness and can cause death in children. Adam Cohen writes in the New York Times that Arya's mother, Loren Eng, has lobbied Congress for increased funding for spinal muscular atrophy research. Compared with similar diseases, she argues, research for her daughter's ailment is badly underfunded. "Members of Congress," wrote Cohen, "listen sympathetically, and then usually say the same thing: The best thing Mrs. Eng can do is to find a celebrity." Without a celebrity spokesman, like Christopher Reeve, no one -- apparently not even Congress -- is going to hear Loren Eng or Arya's cries for help. Cohen points out what should be obvious: "There is something wrong with a system that favors sick people who have access to sitcom stars over those who don't." I'll go even further. There is something wrong with a culture that elevates sitcom stars and other celebrities to the status of experts when they are not. Some years ago, congressmen were trying to get a farm bill passed but couldn't get enough interest. So they called three witnesses before their committee -- Hollywood stars Sissy Spacek, Jessica Lang, and Sally Field. Now, why were they called to testify? None of them were experts on farm policy. But each one had played a farmer's wife in a recent hit movie. Their appearance in Congress was widely publicized. The bill passed. No one cared what the Secretary of Agriculture or leading economists said about policy, but when Sissy Spacek testified, the hearing room was packed. It was the most pitiful example of celebrityism I had seen until Adam Cohen pointed out this new low. In Loren Eng's efforts to find a celebrity spokesperson for spinal muscular atrophy, she discovered what Cohen calls "the disease world's dirty secret": Far from altruistically supporting what they believe to be a good cause, many celebrities demand payment for their services. The more well-known the celebrity, the higher the fee. Mrs. Eng will probably need up-front cash to sign a celebrity to encourage Congress to fund the research little Arya and children like her so desperately need. It's the cult of celebrity gone mad. And as I've been saying for years, we Christians are part of the problem. We often create "our own superstars: . . . baby-faced World Series heroes, converted rock stars, and, yes, former White House aides who supposedly would have run over their own grandmothers" -- and we hold up these, not theologians and pastors, as experts. Americans are so dazzled by the big tube that anyone who is on it -- for any reason (the person could be a rogue or a thief) -- is rewarded. As someone once said, people are famous today for being famous. But celebrity for celebrity's sake is unhealthy. There's nothing wrong with famous people standing up for what they believe. But when Congress and the culture elevate celebrities to the unwarranted status of expert, and when suffering children are held captive to celebrity contracts, it's time to call a halt. We need to teach ourselves and our children to respect people -- not because their faces are recognized -- but because of their abilities, accomplishments, and character. For further reading: Adam Cohen, "When Not Knowing a Celebrity Could Prove Fatal," New York Times, 29 December 2002 (free registration required). To learn more about spinal muscular atrophy and what you can do to help visit the Families of Spinal Muscular Atrophy website. Bob Dart, "I'm no expert, but I play one on TV: Congress's love affair with celebrities," Austin American-Statesman, 10 June 2002. "More and more celebrities using fame to back causes," Dallas Morning News, 26 December 2002 (free registration required). Darrell M. West and John M. Orman, Celebrity Politics (Prentice Hall, 2002). Ken Myers, "Celebrity, Hedonomics, and Popular Culture," an address to Congress members and staff, BreakPoint Online. Learn how you can make a difference in the culture with the "BreakPoint Culture of Life Packet." It includes the booklet "Building a Culture of Life: A Call to Respect Human Dignity in American Life" and a "BreakPoint This Week" special broadcast CD that includes an interview with Wilberforce Forum Fellow William Saunders, Human Rights Counsel and Senior Fellow in Human Life Studies for Family Research Council, along with a speech, "Bioethics and the Clash of Orthodoxies," by Dr. Robert George.

01/9/03