Labor Day weekend is meant to be spent at leisure, enjoying the last few days of summer before the kids head back to school. I almost accomplished that goal this year, but found myself bogged down with the task of trying to get through a couple hours of the MDA telethon. It was a painfully laborious chore that led to two conclusions: Jerry Lewis needs to hand over his microphone immediately, and it's time to pull the plug on the telethon.
The MDA telethon has been a part of my life for as long as I can remember. When the program debuted in 1966, I was all of 2 years old and just experiencing the early joys of walking. The telethon was aired on just one New York City station then, and pulled in over $600,000.
Lewis and the people at the Muscular Dystrophy Association were ecstatic. Hopes were high that a cure for the group of genetic, hereditary diseases that fall under the MD umbrella and cause progressive muscle weakness was just around the corner. The telethon soon was seen nationwide.
Today it's broadcast over 180 stations from coast to coast, as well as worldwide via the Internet. This past holiday weekend a record $65 million was raised. To date, over $1.5 billion has been put up on the big tote board. Yet there is growing resentment in the MD community toward both the telethon and its iconic host.
The harshest criticism has been launched by Mike Ervin. Ervin and his sister were poster children on the MDA telethon in the 1960s. As Ervin got older, he came to resent the telethon's method of using kids to pluck at the heartstrings of America. He began to detest Lewis and the view the comedic star had of people with MD.
The boiling point came in 1990, when Lewis penned a piece for Parade Magazine entitled "What if I had Muscular Dystrophy?" The article filled Ervin and many other people with MD with disgust.
"What if the twist of fate that we hear so much about really happened? What if, when the gifts and the pains were being handed out, I was in the wrong line?" Lewis wrote.
He continued, "I decided after 41 years of battling this curse that attacks children of all ages, I would put myself in that chair, that steel imprisonment that long has been deemed the dystrophic child's plight. ... I know the courage it takes to get on the court with other cripples and play wheelchair basketball, but I'm not as fortunate as they are. I'd like to play basketball like normal, healthy, vital and energetic people. I really don't want the substitute. I just can't half-do anything. When I sit back and think a little more rationally, I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person."
Ervin formed Jerry's Orphans, a group dedicated to advancing disability rights and vehemently challenging the telethon's representation of people with MDA. The group has taken over live broadcasts of the telethon on the Chicago affiliate, as groups of people in wheelchairs stormed the station, chanting "Stop the telethon."
Filmmaker Kerry Richardson made a half-hour documentary about Ervin's fight entitled "The Kids Are All Right." Richardson writes on his Web site, "Millions of viewers tune in every year and come away with the idea that people with disabilities need pity and charity rather than accessible public transportation and housing, employment opportunities and other civil rights that a democratic society should ensure for all its citizens."
The telethon host has done little to ease the concerns of disability activists. In 2001, Lewis responded to a question about telethon protesters by saying, "Pity? If you don't want to be pitied because you're a cripple in a wheelchair, stay in your house!"
During the latest installment of the telethon, Lewis treated the audience to his rendition of "My Mammy." The song, first recorded by William Frawley and later Al Jolson's signature tune, embraces a term considered highly derogatory of African-American women. It's further proof that Lewis doesn't know when he's offending his audience.
This year's telethon raised over $500,000 locally. Maybe that money should be placed in the hands of Hunter's Hope to promote their fight for national testing of newborns for a whole host of diseases.
It's possible there will never be a cure for Muscular Dystrophy. Forty-two years and $1.5 billion is a lot of time and money spent with little progress. Maybe it's time for the telethon to change its focus and raise funds for ailments like cancer, autism and heart disease, all of which affect far more people than MD.
And a sizable group of people with muscular and neurological diseases want the pity parade to end. No one has said it better than blogger Martina of Belchertown, Mass. We'll give the young woman with Cerebral Palsy the last word:
"All Jerry does is cause people to think that disabled people are sad, unhappy human beings waiting for a cure. Most of us are not. Most of us are more interested in our ability to have a job, have kids, get married, get insurance, get appropriate sexual health information and so on. We're certainly not waiting in our houses like shut-ins for the day when the mythical 'cure' comes. But of course Jerry Lewis would know nothing of our reality in the first place."
|Niagara Falls Reporter||www.niagarafallsreporter.com||Sept. 8 2008|