Charleston, S.C., Aug 28, 2000 -- In 1965, comedian Jerry Lewis became host
of the national Labor Day telethon for the Muscular Dystrophy Association.
Unless a cure is found, he said in one of his appeals, "These kids won't
be alive in ten years." Thirty-five years later, some of those "kids" are
very much alive -- and protesting the telethon. They object to
stereotypical images of people with muscle diseases and other disabilities.
In downtown Charleston, the tenth annual telethon protest will be held
this Labor Day in the vicinity of King and Market.
"I was eight years old when I heard from Lewis that I had a 'killer
disease,'" says attorney Harriet McBryde Johnson, Charleston protest
organizer. "I believed I didn't have long to live. That's scary news for
anyone, and especially for a child. Now I'm 43 years old and they're still
telling the same distorted story. They still imply that our only chance of
happiness is a cure. These stereotypes get in our way when we try to live
On Labor Day morning, Johnson will be out with a small group of
friends picketing and distributing handbills. She is one of many people
with disabilities around the US who are rallying opposition to the
telethon. "I never know what other people are up to until it's done,"
Johnson says. This year, a protest is planned in Chicago. Other telethon
critics are airing the issue on radio, in newspaper essays, and online.
Also on Labor Day, Not Dead Yet, a national disability rights organization,
protesting an international pro-euthanasia conference being held in Boston.
"That is a different issue," says Johnson, "but there is a connection.
We're all fighting the dangerous assumption that it's better to be dead
"I'm astonished that this has turned into a ten year fight," Johnson
says. "The first year, it was just my Dad and me out there for the first
hour. Our numbers doubled -- to four -- later in the day. In recent
years, around a dozen wonderful friends have given part of their holiday
for this effort."
Johnson's father, Dr David D Johnson, has been attending the protest
since its beginning. A retired Citadel professor, he now volunteers
weekdays at the Charleston Branch, NAACP. "I like to tell people I'm
Harriet's bodyguard," he says. "But in fact most people are friendly.
Some even try to give money, but Harriet always gives it back. I think the
telethon ought to get rid of Jerry Lewis. He's called people in
wheelchairs 'half persons' and says one outrageous thing after another and
won't apologize. This is bigotry. The telethon ought to fade into
history. It doesn't fit in with the Americans with Disabilities Act and
the idea that people with disabilities deserve equal civil rights."
Harriet McBryde Johnson will be available for interview at 11:00 Labor
Day on the corner of King and Market or by appointment.
F.A.Q.'S ABOUT THE TELETHON PROTEST
What's it about? The "Jerry Lewis" telethon of the Muscular Dystrophy
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."
compared protesters -- like us -- to Nazi storm troopers. He refuses to
apologize or change his ways, and MDA stands firm beside him.
What do we want? Right away, MDA should replace Lewis. It should stop
using children on the air. But also, MDA should wean itself from the
telethon. 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 a quarter of a million dollars goes to MDA's Executive Director,
Robert Ross -- whose well-paid duties apparently include writing silly
letters to Charleston newspapers criticizing my protest. However, in
fairness, we acknowledge that the money does some good. A substantial
amount goes to medical research and programs that benefit people with
muscle diseases. Our challenge is to find a way to do good without doing
Don't we 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 our personal connection? Like most protest organizers around the
US, I have a muscle disease covered by MDA. I have never walked. When I
was a child, I expected to die young because I believed it when the
telethon said I had a "killer disease." I do not want another generation
to grow up under that cloud. I'm 43 years old and have been a lawyer for
fifteen years. I'm reasonably happy and reasonably satisfied with my life.
But every Labor Day, MDA attacks my dignity.
Aren't telethon protesters a minority? Maybe. But all movements for change
start small. I'm proud to be on the same side with serious, thoughtful
people here and around the country. Going public has taught me that I'm
not alone. Charleston is learning that there are two sides to the
telethon. Support has definitely been building.
How long will we keep it up? This is the tenth year of protests in
Charleston. We'll do it as long as necessary. WE'RE NOT GOING AWAY.