Anti-Telethon Protest 94

By Nadina LaSpina

The end of another summer, another Labor Day. Barbecues with the family, Jerry Lewis on TV, once again, begging folks to send bucks to save his "kids"... and us, the activists, the "ingrates", once again, protesting the MDA Telethon. We're becoming a tradition already.

This year, on Monday, September 5, there were anti-telethon demonstrations in 30 cities across the nation. Here in New York, at 1 PM, about 30 demonstrators, many in wheelchairs, lined up in front of the Marriott East Side Hotel, on Lexington Avenue and 49th Street, site of the Muscular Dystrophy Association Telethon phone bank. The bellhops hardly glanced at us as they went about their business. The police actually had welcoming smiles on their faces: "just try to keep a passage clear..." We had been expected. No one was surprised to see us there with our signs and our banners.

The media practically ignored us. Not one reporter was there from any of the NY newspapers; of all the TV stations, Channel 1, alone, showed up. Last year every NY paper and every local news broadcast covered our demonstration. I guess becoming a tradition means we're "old news".

Organizers of anti-telethon demonstrations in other cities complained of the same lack of media attention. Mike Ervin, who with his sister, Chris Matthews, founded "Jerry's Orphans", told me that in Chicago almost 50 people turned out to protest the telethon. They only managed to attract the attention of one radio station. So we shouldn't complain, at least we got on cable TV.

During the demonstration, Hope De Rogatis and I, having done most of the organizing work, were especially disappointed at the general disinterest. "Should we force our way into the hotel? Should we go in the street and block traffic?" we kept asking each other. I don't think the other demonstrators shared our feeling of frustration. Everyone seemed enthusiastic and energetic enough as we chanted "No more pity, no more insults" and held up our signs for passersby and passing cars to see. Some of the cars honked their horns, hopefully to show solidarity not annoyance. Only one passerby, an elderly man on a scooter, reacted with anger "You're all sick, Jerry Lewis is a wonderful man" he yelled.

There were as usual many signs condemning Jerry Lewis: "We pity Jerry's attitude", "Cure Jerry Lewis". The Somoza girls, Alba and Anastasia, held signs that said "We are not Jerry's little beggars". Many more signs condemned telethons in general: "No more telethons - Civil rights not pity". This reflected a shift in focus, or better a widening of the focus, which, according to Mike Ervin, was evident this year throughout the nation. Our target is no longer just Jerry and the MDA telethon, but all telethons. None of us really believes anymore that telethons can be improved, they must be eliminated. They are simply not an acceptable way of fund-raising. Even if they let up on the mawkishness, even they make the effort to portray us as adults leading productive lives instead of pathetic helpless children, telethons still broadcast the message that "disabled is not OK", that we are "less", less able, less fortunate, less human. It's only by making people feel sorry for us and thus feel better about themselves that telethons succeed in raising millions.

A very important connection was made this year with the need for health care reform. "Health care is a right" the signs said and a few of us wore our "single payer" buttons. If health care were a right there would be no excuse for telethons or for charity. It is only because this country has never provided adequate health care for all its citizens that charity organizations can blackmail and embarrass us by reminding us that "they gave us the chairs we're sitting on". If health care were a right, no one ever would have to beg in order to get needed services and equipment.

And if medical research were seen as a necessary part of the health care of the people of a civilized country, the MDA would not be able to keep collecting millions by telling people "the cure is right around the corner", something we've been hearing for the past 30 years.

The demonstration ended at about 4 PM. "Are we really making a difference? How long do have to keep doing this?" we were wondering as we headed home for the family barbecue. We are making a difference. The MDA has been losing money steadily in the past three years. And though the change is not yet that noticeable, we are very slowly, very very slowly, changing public perception. As Mike Ervin put it "even if we just change one person's mind every time we have a demonstration, we're doing a good job". So, let's not get discouraged, let's speak out against telethons every chance we get, let's keep fighting back, let's keep demonstrating.