By Ben Mattlin
Monday, September 3, 2007 12:00 AM
When I was six years old, I appeared on the Jerry Lewis Labor Day Telethon for the Muscular Dystrophy Association. I don't have muscular dystrophy, but I was born with spinal muscular atrophy, a similar progressive neuromuscular weakness. I have never walked or stood.
On the broadcast, I was asked for my name and age. That's about all. Then I was dismissed.
I never met Jerry Lewis. I never became famous, as I'd dreamed. I was cute, though, with big blue eyes and unruly blond curls, and I was in several magazine and newspaper ads for MDA. For one of them, I was positioned standing in leg braces -- which I'd used years earlier for physical therapy, before discovering the torture didn't actually do me any good -- and I was told the caption over my head would be, "If I grow up, I want to be a fireman."
I didn't like this. If? My prognosis was a normal life expectancy. Besides, I didn't want to be a fireman! I wanted to be a scientist or a detective. So, in the photo, I'm crossing my fingers, where no one can see. I never did another ad.
Many years later, when I was an adult, I used this image to protest the telethon's simplistic treatment of "Jerry's Kids." I found that many others were mounting similar demonstrations. Now I find myself asking whether our message was heard. The TV hosts still ask us to "help Jerry's kids." But does the public understand that, even more than help, those of us with disabilities want respect?
Perhaps. MDA now pays lip service at least to the idea of disability rights. The telethon now shows some kids with disabilities doing active things. Yet fundamental problems remain.
Today's telethon, for example, will feature nondisabled celebrities onstage raising money for disabled kids, who are mostly offstage. I know the purpose of the telethon is to raise money, and that people won't tune in unless there are performers they want to see. Nevertheless, can you imagine an NAACP fundraiser hosted exclusively by white people?
If you are not disabled, you may think this is a relatively minor issue. But it matters. The other day my wife and I were at the theater with our two young children. During the intermission, an usher dutifully came over and asked my wife if I needed to use the restroom.
"How should I know?" she answered. "If you have a question for my husband, why don't you ask him yourself?"
The usher did not make that mistake again.
The larger issue is one of respect. And while I understand the sympathetic impulse (and marketing power) of a slogan like "Help Jerry's Kids," I don't think it helps us gain respect.
Of course, MDA may respect the disabled more than its fund-raising tactics imply. If it wants to stand out as an advocate for disability rights, however, it should set a better example -- and demand that its corporate contributors do as well.
When most people see those of us with severe, progressive neurological conditions, they want to help, and I am not ungrateful. The desire to cure is probably human nature. And MDA's main mission is to be a medical charity; it claims to spend 77 cents of every dollar it raises on services, an admirable percentage, and finances hundreds of clinics and medical researchers.
Still, for the past 30 years, the message of the disability-rights movement has been as consistent as it is simple: We're fine as we are. We don't need fixing. We need access. We need respect. We need work. In other words, we need the same things everybody else does.
So today, I won't be watching the telethon. My wife and I and our two kids have better things to do.
Ben Mattlin is a writer and editor who lives in Los Angeles.