The decision of Muscular Dystrophy Association to drop Jerry Lewis from the Telethon is a story that begs for more information. He obviously put them on the map, but may have stayed too long at the fair. It is hard to imagine an 85-year-old performer not being cranky at times. But the denouement has been anything but satisfying. And who knows if things won’t change before show time. The approximately $2 billion in funds he has raised for research since the 1950s are a real tribute to his humanity. His personal identification with people who are often social outcasts, and who suffer the mental abuse of being demeaned and forgotten by the larger culture, has been important.
And lest you ever think your influence doesn’t count – this all began when a staffer on the Colgate Comedy Hour pressed him to lend a hand. Boy did that “ask” pay big dividends. So thanks to that individual and Mr. Lewis and all who have pitched in to help him through the years.
MDA Needs Reform
The real problem with MDA is not their fundraising, but that they are still far from their goal. Another problem is their Hodge podge adoption, presumably by cultural osmosis, of the reigning philosophic approach to science, one rooted in a cold utilitarianism. If any group should be painfully aware of the dangers of judging humans, medicine, scientific research, or any other human activity (which always has a moral dimension) simply by the standard of “what works” it should be the MDA. Their tone deafness at times does a disservice to the handicapped people they represent. Utility is a useful servant, but a monstrous master.
They MDA needs to improve their moral judgment in spelling out where research funding goes, avoiding any involvement with worthless fads such as embryonic stem cell research, and focusing on adult stem cell research, which has actually proven useful. After all, it was these stem cells, injected into MDX mice, a model for Duchenne muscular dystrophy, that has created muscle fiber and produced dystrophin protein, an important breakthrough. As an organization working with the handicapped, the MDA’s highest goal needs to be as an advocate for the dignity of the human person, especially the weakest. All their scientific research grants need to be consistent with that ethic.