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‘Jerry’s Orphans’ Attack Telethon

NEWSDAY

The annual muscular dystrophy telethon is supposed to be a “Labor Day Love-In"--a sentimental and entertaining fund-raiser that collected more than $45 million last year for research and treatment of 40 neuromuscular diseases, according to its longtime unpaid host, comedian Jerry Lewis.

But behind the scenes, the love-in is beginning to look more like a war.

Over Labor Day weekend, disabled telethon critics, who include several former telethon poster children who call themselves “Jerry’s Orphans,” plan demonstrations at stations carrying the broadcast in more than two dozen cities.

Critics charge that the telethon fosters an outdated image of disabled people as pitiful and childlike.

Defenders say the telethon--which Lewis began hosting from New York City in the 1950s--raises money to save and improve lives. (This year, it will be broadcast from Las Vegas.)

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The conflict has even embroiled the White House, pitting President Bush and a top adviser against the chairman of a federal civil rights agency.

The critics say they want the telethon to convey a more realistic picture of disability as a normal part of life rather than as a tragedy, to reduce the role of children, and to put less emphasis on finding a cure and more emphasis on improving disabled people’s lives.

“Our goal is not to put the MDA (Muscular Dystrophy Assn.) out of business,” said Mike Ervin, a former telethon poster child from Chicago who last year formed Jerry’s Orphans with his sister, Chris Matthews, also a former poster child. “Our goal is to put Jerry Lewis out of the disability business. . . . He doesn’t understand in any way, nor does he wish to, the majority of the (disabled) population.” Lewis declined to be interviewed.

The critics have an ally in Evan Kemp Jr., chairman of the Equal Employment Opportunity Commission. Kemp, who has muscular dystrophy, was on record for years before he attained his EEOC post as opposing the telethon for what he called its “pity approach to fund raising.” Last year, he began raising the issue again.

In February, Lewis wrote a letter to Bush describing himself as a “point of light” and accusing Kemp of “misusing the power of his governmental office” to attack the telethon.

Samuel Skinner, then White House chief of staff, responded that the Administration had “no position” on the MDA’s fund-raising methods. But in July, after the MDA complained about a published interview in which Kemp raised the issue again, it received a different letter from Skinner.

“We have talked further with Kemp, reiterating the President’s full and enthusiastic support for the MDA and the Labor Day Telethon and our expectation that he will refrain from attacking the organization and event in the future,” Skinner wrote.

Kemp and Skinner declined to comment.

Telethon supporters call the critics a misguided minority of disabled people who misunderstand the telethon’s content.

“They confuse pity with compassion,” said Matthew Schuman, a sports reporter for the Greeley (Colo.) Tribune who has muscular dystrophy and is a former poster child. “I don’t think there’s anything wrong with a society that’s compassionate toward others.”

The MDA says that the majority of people profiled on the show are adults leading productive lives, and that the telethon has widespread support among disabled people.


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