For the first time in 45 years, comedian Jerry Lewis will not be hosting the telethon for the Muscular Dystrophy Association (MDA). This year’s Labor Day event was supposed to be his last and it’s not entirely clear why the 85-year-old entertainer will no longer serve as chair of the telethons which have, all told, raised $2.5 billion, says the Los Angeles Times. Other performers including Paul Rodriguez, Dane Cook and Dave Chapelle have objected to his ouster but to many of us, it was long overdue and not simply because of the declining earning power of multi-hour telethons in the age of the internet or Lewis’ erratic behavior (mocking a female reviewer’s menstrual cycle in 1986, the near-utterance of a homophobic epithet in 2007).
“He’s the public face of the telethon,” performer Jason Masada says of Lewis in the Los Angeles Times, a comment that exactly captures why Lewis as chair of the telethon, and even telethons themselves, belong more and more to the age of the rotary telephone with the curly cord. Says M. Carrie Miceli, co-director of the Center for Duchenne Muscular Dystrophy at UCLA:
“When the disease wasn’t treatable, it was sadness and poster children. The new image is not as pitiful as much as empowering.”
Muscular dystrophy is a “group of disorders” affecting more than 1 million Americans; the most common form of the disorder is Duchenne muscular dystrophy, which affects about 1 in 3,500 males worldwide. Neuromuscular disorders weaken the muscles and can eventually “result in profound disability,” but scientific advances mean that those with it now live into their 30s and beyond. Other groups, including one called Cure Duchenne, have also arisen and challenged what you might call the hegemony of Lewis’ telethon which, in its heyday, could go on for 21 hours (it has now been whittled down to six).
At the February 2009 Oscar awards ceremony, Lewis received the Jean Hersholt Humanitarian Award for his work in the telethon. But many felt that he had really done more to harm rather than help the public understanding of disability; disability rights advocates had long criticized Lewis’ telethon for perpetuating pity rather than respect and dignity for individuals with disabilities. An essay entitled A Test of Wills: Jerry Lewis, Jerry’s Orphans, and the Telethon in Ragged Edge made the case that all the telethon had come to do was to reinforce the “stigma against disabled people.”
Once, a glitzy, smiling celebrity and a child with crutches, in a wheelchair, wearing leg braces — “Jerry’s Kids” — was the public image of disability. Being disabled meant you were sick, weak and in need of help and grateful for whatever someone — especially someone famous! — was so kind to give you. It meant you were “a blessing” and, as my husband’s uncle told him and his son when they went to visit their severely disabled cousin JP in a state institution, a reminder of “why you should be grateful you’re not like that.” But today, the discourse about disability is about empowerment: Think of Oscar Pistorius qualifying for next year’s Olympics on high-tech prosthetic blades. Someone with disabilities may indeed need accommodations such as ramps or an augmentative communication device. But unlike yesteryear’s crutches, these aren’t meant to evoke pity but to show how, by changing the world around us, we can make it a better place for all us, with all of our different abilities.
Photo from Wikimedia Commons