"I'm telling people about a child in trouble. If it's pity, we'll get some money. I'm just giving you facts. Pity? You don't want to be pitied because you're a cripple in a wheelchair? Stay in your house!"
With these words, actor Jerry Lewis laid bare his contempt for people with disabilities who object to the pathos-pushing tactics he uses to raise funds. During a May 20 profile on CBS Sunday Morning, Lewis was asked to respond to critics of his Labor Day Muscular Dystrophy Telethon.
For the record, I am one of those critics. I have organized local protests in Denver, where I live, nearly every Labor Day since 1991. I have published articles deconstructing the telethon's cure-at-all-costs hoopla, and relating my own youthful participation in this weird American ritual as a Muscular Dystrophy Association (MDA) poster child. (I have spinal muscular atrophy, and played my cute kid role in 1974.) So when Lewis admonished telethon protesters to "Stay in your house!" he was talking to me, and to countless other anti-telethon activists.
Yet he hit a much bigger target. People with neuromuscular disorders (the ostensible beneficiaries of the telethon) and other disabilities reacted with immediate anger. Even those who typically grit their teeth and wait quietly for Labour-Day weekend to pass, could hold back no longer. Hundreds e-mailed their indignation to the MDA.
Ten days after his comment aired, Lewis and the MDA issued joint apologies. The MDA board of directors announced that it was "deeply disturbed" by the comment (which it carefully avoided repeating), saying it "does not reflect the views of MDA." Many of us got a little thrill from the next sentence: "In fact, our displeasure has been communicated directly to Mr. Lewis."
We imagined that trip to the woodshed, and hoped perhaps it signaled a wedge between Lewis and the MDA leadership. After all, this was the first time the organization had castigated their revered telethon host, despite his long history of insulting people with disabilities.
In a 1991 Parade magazine article, Lewis referred to people in wheelchairs as "half persons," sparking a half-dozen anti-telethon protests across the United States. Several years later, during the show's broadcast, Lewis called children with muscle diseases "mistakes who came out wrong." Up to now, MDA had always indulged Lewis' gift for denigrating his "kids."
In his forced apology, Lewis claimed to have spoken "in error." MDA's statement insisted on "the Association's longstanding respect for those with disabilities." But these efforts to disclaim Lewis' words obscure how accurately they reflect the values expressed year after year on the telethon itself. In those few sentences, Lewis managed to sum up the ideology fueling the fundraiser - and reveal the reasons for our protests.
As we in the disability-rights movement keep trying to explain, our biggest problems come not from our physical conditions, but from a society that fails to accommodate us. Lewis's telethon plays up the problems, without suggesting their sources or solutions. For instance, those sappy vignettes will make much of an "afflicted" person's inability to wash his own hair, or get herself to the toilet, without any discussion of the urgent need for publicly funded personal assistance, or of the problems posed by the architectural barriers designed right into the layout of most private homes.
Trouble also arises from the fact that thousands of families dealing with disabilities in the U.S. and Canada are denied adequate medical care and equipment - necessities which should be basic human rights, not handouts accompanied by a drum roll and tally.
Perhaps the MDA acts from a cynical belief that the average viewer doesn't care to think about health or social service policy issues, and would rather just pick up the phone, make a donation, and sit back and enjoy the warm glow of having done something good. But our lives, and our independence, depend on persuading people that access, support, and inclusion - not facile, media-manipulated beneficence - are the essential values of our civilization. If we can't do that, we are in trouble.
I think the MDA and the telethon producers really do believe that the rather spectacular numbers popping up on that television tote board depend largely on successfully tapping into the pity lying dormant in the public's heart. Critics have been saying all along that the telethon promotes pity. The MDA has denied this. In an unguarded (or arrogant) moment, Lewis let the cat out of the bag.
To people with disabilities, pity feels like prejudice - a false assumption about our lives. The telethon relies on stereotypes of helpless incompetence, so that viewers can feel "lucky" by comparison. People with disabilities cannot be shown as fully functioning workers, lovers, students, parents, or citizens - even though, in real life, many of us are.
Activists are already gearing up to protest the telethon this Labor Day. As in past years, we'll be waving signs, leafleting, chanting ("Dignity Not Pity! Rights Not Charity!") and urging viewers and sponsors to end their support for the Jerry Lewis Telethon. We'll be in front of television studios, retail outlets and other sites, changing one mind at a time.
The MDA's apology for Jerry Lewis's offensive comments is a start. But if it's sincere, logic would dictate that the organization go a few steps further: apologize for - and herewith abandon - the telethon itself.
Laura Hershey is an activist and writer based in Denver, Colorado. Many of her articles, and some anti-telethon resources, can be found online at www.cripcommentary.com.
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