Frequently Asked Questions about the Telethon Protest

by Harriet Johnson

What's it about?

The "Jerry Lewis" telethon of the Muscular Dystrophy Association. The telethon feeds out-dated stereotypes about people with muscle diseases and other disabilities. For 21 hours, on 200 stations, it makes people think that we are doomed to sad and tragic lives unless they find a cure. In a 1990 magazine article, Lewis called us "half persons." He's called kids with muscle diseases "mistakes who came out wrong." He's compared protesters -- like us -- to Nazi storm troopers. His most recent retort (5/20/01, CBS Sunday Morning) was: "Pity? You don't want to be pitied for being a cripple in a wheelchair? Stay in your house." Lewis refuses to apologize or change his ways, and MDA stands firm beside him.

Did Lewis really say all that stuff? You made up that one about "Stay in your house," right?

Wrong. He really said it. You can hear the May 20 remark, and read other quotes, on Laura Hershey's web site, at the address given at the end of this information. On August 26, CBS re-ran the interview but edited out the offensive quote. We don't know why they're trying to rewrite history.

What do you want?

Right away, MDA should replace Lewis. It should stop using children on the air. But also, MDA should wean itself from the telethon. The first step is an objective accounting. As a society, we should stop begging and demand a fair and rational system to pay for medical research, services, and equipment. We need civil rights.

Where does the money go?

There's no detailed public accounting because MDA is a private corporation, not a government agency. We know that each year, over three hundred thousand dollars goes to MDA's Executive Director, Robert Ross -- whose well-paid duties apparently include writing silly letters to various newspapers criticizing our protest. However, in fairness, we acknowledge that the money does some good. Some money does go to medical research and programs that benefit people with muscle diseases. MDA's challenge is to find a way to do good without doing harm.

Don't you want a cure?

Medical research is a worthwhile goal. Some people are passionate about cure; their desire for a cure outweighs everything else. For others, however, cures are far less important than you might think. We believe that disability is a natural part of life. It's part of who we are. Cures, if they come, will be in the future. We can cure prejudice and discrimination -- the real "killer diseases" -- right now.

What's the personal connection?

Most protest organizers around the US have muscle diseases covered by MDA. The telethon misrepresents what's it's really like to live with a neuromuscular disability. Some of us are former poster children. Others, in childhood, expected to die young because we believed it when the telethon said we had a "killer disease." We are now grown-up, some of us even sprouting gray hairs. We do not want another generation to grow up under that cloud. Nor do we want our own dignity attacked. Our protest is also supported by other people with disabilities, friends, and allies who believe in human equality.

Where have protests been held? What do you do?

There were a couple of isolated protests back in the 1970's, but most activity was galvanized in 1991, following Lewis' infamous article in Parade magazine. Over the years, picketing and leafleting have occurred in Los Angeles, Chicago, Denver, Los Angeles, New York, and Charleston, South Carolina. A Los Angeles-based advocacy group called Barrier Busters held protests in L.A. and/or in Las Vegas from 1990 through 1995. In Chicago, Cris Matthews and Mike Ervin organized telethon opposition under the name of Jerry's Orphans. In Denver, Laura Hershey organized the Tune out Jerry Coalition. The Charleston protest has no name, but claims the world endurance record: Harriet McBryde Johnson, a Charleston attorney, has been out on the streets with an ad hoc group every year since 1991. Others have taken other approaches. In the early 1990's nationally syndicated columnist Diane Piastro asked questions about MDA's finances -- and her column was dropped by several newspapers after MDA sent threatening letters. In Tampa, Greg Smith has devoted time on On a Roll Radio to the controversy. Op-ed columns have been published around the country, and we have been winning hearts and minds in both the mainstream media and the disability press.

Aren't the protesters a minority?

Maybe. But all movements for change start small, and our movement is definitely building. Going public has taught us that we're not alone. Most decent people can learn to recognize bigotry, and when they do, they understand it has no place in a charitable organization.

How long will you keep it up?

We'll do it as long as necessary. WE'RE NOT STAYING IN OUR HOUSES!!

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