CHICAGO - For 60 years, Jerry Lewis has hosted the Muscular Dystrophy Association annual Labor Day telethon. And for about 20 years, one of "Jerry's Kids" has been at odds with him over the way the money is raised.
Mike Ervin appeared on the telethon when he was six years old. Now he's a writer and disability rights activist who speaks out against the telethon because he claims it promotes stereotypes of people with disabilities as objects of pity.
At the same time, Ervin says he understands that people who answer the phones and appear on the show mean well.
"Of course we all want to give, but we really need to use the telethon as an opportunity to really seriously think about what charity is. At what point does it become something to deny or to ignore what we have to do?"
Ervin says with the unemployment rate up around 20 percent for people with disabilities, he prefers investments in programs that promote jobs and help people stay out of institutions.
"The infrastructure is still bad. They're still in institutions because services aren't there, and all these problems continue to exist."
Because of stereotypes, Ervin says many people treat him like a helpless person when they see him in his power chair. He cites, for example, an incident outside a coffee shop as he waited for the streetlight to change. A passerby mistook Ervin's newly purchased cup of tea for a beggar's cup.
"A man came out and held out his hand, and his hand had change in it. Then he saw that I had a lid on the cup, and he said 'Oh, shut down for the day, huh?'"
People with disabilities need jobs, not pity, Ervin says. In past years, he has contacted the state attorney general to check the telethon organization's 990 federal tax form to try to get clear info on how much is raised in contrast to how much it costs to produce the telethon.
"That form will tell you exactly what they make and how they make it. And they raise, curiously enough, quite a bit of money without their telethons."
He adds that he has nothing against the Muscular Dystrophy Association raising money, he just thinks the organization should take a different approach. An association spokesman says that they try to portray people with disabilities as leaders in the community.
Disability rights groups have produced a half-hour documentary on Ervin's fight and posted it on the Web. It can be viewed at www.thekidsareallright.org.
