Protesting Jerry Lewis' charity mentality

I always wondered how I would react on the day Jerry Lewis died. When the comedian died Aug. 20, my name appeared in the Associated Press obituary as among the disabled people who protested his annual Labor Day telethon for the Muscular Dystrophy Association. We wanted to bring an end to the annual spectacle that harmed people with disabilities far more than it helped us. Eventually, Lewis was dismissed as host in 2010. The last telethon aired in 2014.

When Lewis died, a part of me said to leave the poor guy alone. Don't bring up any of that telethon protest stuff because it's all in the past. The telethon is no more.

But as Lewis is praised for the money he raised, it's important to remember that the anger he generated among many disabled people is just as much of a part of his legacy.

Those of us who protested often referred to ourselves as Jerry's Orphans. It was a sarcastic take on Jerry's Kids, which was how the Muscular Dystrophy Association referred to people with muscular dystrophy in telethon propaganda, which also featured an annual poster kid, who was a meek child with the disease.

Lewis and the Muscular Dystrophy Association wallowed in the pity approach. The basic message they hammered into the heads of American viewers year after year was that disabled people are powerless, passive, fragile, childlike and unable to contribute anything meaningful to society unless we are "cured."

This was a cheap and exploitive tactic. I feared that some kids with disabilities and their families might actually come to believe this shallow analysis and pin all their hopes on some bloated charity.

I have muscular dystrophy, as did my late sister, and we were both Muscular Dystrophy Association poster kids in the 1960s. Many of Jerry's Orphans protesters and sympathizers also were people with muscular dystrophy. When we showed up around the country with protest signs and fliers outside sites where local live telethon broadcasts were taking place, the irony drew a lot of media attention.

Lewis always reacted to us with nothing but pure fury and hostility. The Associated Press obit recalled one of his infamous, caustic responses. In a 2001 interview that aired on CBS, he said, "You don't want to be pitied because you're a cripple in a wheelchair? Stay in your house!"

In a 1993 article in Vanity Fair titled "Jerry vs. The Kids," he said about me, "This one kid in Chicago would have passed through this life and never had the opportunity to be acknowledged by anybody, but he found out that by being a dissident he gets picked up in a limo by a television station."

It's too bad Lewis didn't react differently. What if he had found the grace and humility to acknowledge that those of us who felt compelled to defend ourselves and others from the damage caused by the telethon had a point? If that happened, maybe I'd be writing a happy-ending tribute about how the Muscular Dystrophy Association, activists, and Lewis all got together and created a dynamic model for raising money to support disabled people without degrading and undermining them with pity. But that's not how it worked out.

To the family, friends and admirers of Jerry Lewis, I wish you peace.

Mike Ervin is a writer and disability rights activist living in Chicago. He blogs at Smart Ass Cripple.