Pity not the disabled, but a world where begging is necessary


Marilynn Phillips is dreading the weekend. She knows what always happens this time of year.

"I guarantee," she says, "for about a month I'll be treated like some pathetic creature. Once, I even had a woman pat me on the head. I'm a Ph.D. for God's sake, and she pats me on the head like I'm a child."

Phillips is a Ph.D., an English professor at Morgan State and she has polio. She uses a wheelchair.

And this weekend, as on every Labor Day weekend for what seems like forever, Jerry Lewis will sing and dance and take a pie in the face and weep and beg and do the entire creepy Jerry routine while raising tens of millions of dollars to help people with various disabilities -- Jerry's kids -- in the Muscular Dystrophy Association (MDA) telethon.

But Phillips, a former March of Dimes poster child, doesn't want his help.

Neither does Bob Reuters, who's the director of Baltimoreans Against disABILITY Discrimination and whose daughter has a form of muscular dystrophy.

"We call it a pity party," Reuters says of the telethon. "The telethon is based on the premise that these are helpless people who need your money. That's the image -- the stereotype -- Jerry Lewis promotes every year. We're saying you don't have to belittle someone, you don't have to insult someone, to help them."

If these people sound angry, it's because they are. They're angry particularly at Jerry Lewis, whose telethon is seen as the least sensitive to these concerns.

This attitude surprises and offends many. Hasn't Lewis raised something over a billion dollars for MDA? Hasn't that money built hospitals and bought wheelchairs and funded research?

Of course. And yet, an increasing number of people, particularly within the disabled-rights movement, are asking if too high a cost is being paid.

You know how the telethon works. Some star sings a song. Then they bring out a child in a wheelchair, Jerry does a little shtick with him and finally says, in so many words, "Look at this pathetic kid. Do you want your kid to end up like this? Help my kids. Send us money so you won't have to live through this horror."

The cost, as Mike Ervin would tell you, is paid in dignity. He's a former MD poster child who has formed a group with his sister, also a poster child, called Jerry's Orphans -- an obvious play on Jerry's kids, a term Ervin says is as demeaning as calling a black man "boy."

"We don't want pity," he says. "We want respect. You can't pity someone and respect him at the same time."

Jerry's Orphans want respect. And they want to get rid of Lewis.

Is this heresy? The Jerry Lewis telethon is a religion of a kind. It's shown locally on Channel 2, and maybe 80 million people across the country will watch, and as much as $50 million will be raised.

The anti-Lewis movement took off after a 1990 Parade magazine article which Lewis wrote from the vantage point of a disabled person. In it, he called disabled people "cripples" and wrote: "I may be a full human being in my heart and soul, yet I am still half a person."

People began asking whether Lewis, no matter how well-meaning, wasn't too rooted in the thinking of the past. Does an inability to walk really make you half a person? They also began asking why the MDA board has only two disabled members out of 20.

"There are many ways to accomplish what they want to accomplish," Ervin says. "It's hard work. It's much easier to do these thoughtless telethons. It's a challenge to find a better way, where people can maintain their dignity."

In this month's Vanity Fair, there's a very tough look at Lewis and the telethon. Lewis takes the opportunity to berate his detractors. He says of the dissidents, "You have to remember they're sitting in chairs I bought them." Once asked if he should hear out his detractors, Lewis screamed, "Never, never, never."

And so, we can expect Lewis to be Lewis and the telethon to be recognizably the same, a screen full of smiling children and what Ervin calls "super-crips" -- disabled people who have jobs, suggesting that's somehow extraordinary.

And Lewis will ask each of us to give him money for his kids.

What should we do? Maybe we should send in a check with a note saying that we won't send any more unless there's a change in attitude -- and hosts.

Which brings up a question we should each ask ourselves as we feel our heartstrings being tugged: Should anyone ever have to come out on stage and beg for a wheelchair?

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