By: Catherine Kudlick
Paul Longmore would have had a lot to say today, the first Labor Day without telethons and without Jerry Lewis. His deeply-researched book, Telethons: Spectacle, Disability and the Business of Charity suggests that he’d be thinking big picture.
Most obituaries praised Lewis as an entertainer and philanthropist. But surprisingly few touched on the fact that the comedian did more than any other single person to influence the lives of 1 in 5 Americans, people with disabilities. History will show that Lewis’s personal and philanthropic success came at an enormous price.
In their heyday, everyone knew of the telethons that dominated American television each Labor Day weekend. Combining “television” and “marathon,” the programs began in the 1950s, primarily to raise money for disability-related charities until the last American one aired in 2015. The variety shows featured cheesy comedy, magic acts, gospel choirs, big name entertainers, and CEOs from corporations with household names who joshed with emcees like Jerry as they celebrated rising donation numbers on giant glistening tote boards.
To be sure, thanks to Lewis’s tireless efforts over a half century, according to the Muscular Dystrophy Association (MDA), his weekend-long extravaganzas raised over $2 billion dollars to fight the neuromuscular disease. The money has funded research and provided badly-needed equipment such as wheelchairs and hosted life-changing summer camps. Above all, the programs introduced disabled people into mass media culture for the first time in history.
But this fundraising came at the expense of people with disabilities.
In a world with only a few television channels and no Internet, Jerry Lewis and his telethon essentially had a monopoly over public perceptions of disability and disabled people. And because they were praised as feelgood moments or dismissed as kitsch, few have appreciated their ongoing damaging impact.
In sharp contrast to the schmaltzy entertainment, the programs trotted out the most dreary images of helplessness and tragedy associated with disability to raise money. They borrowed heavily from Victorian sentimental literature (think “Tiny Tim” in Charles Dickens’ A Christmas Carol) where sad-looking children hobbling on crutches received wild applause as they struggled awkwardly across a huge stage.
These “poster children” rarely had a chance to speak except to confirm carefully-scripted messages. Parents cried as they spoke of how miserable their child’s disability had made everyone’s lives. Then Lewis would implore viewers to give to help find a cure to ensure that something like this never happened to you.
Maybe because viewers understood these as touching moments, they missed the outrageousness of people living in the world’s wealthiest nation having to break down in front of millions on national television to get basic healthcare and medical equipment.
And maybe these weepy moments prevented spectators from understanding that they were participating in a humiliating ritual that stripped people with disabilities onscreen and off of their dignity.
Imagine hearing yourself being spoken about in such a disparaging way in front of millions, with your parents right there as part of the show. Imagine watching from home, with these yearly programs being the only time anyone ever talked about people like you. And imagine carrying these ideas of being a burden inside as you grew into adulthood.
Certainly the stories that inspired donors to give money to help “the less fortunate” were not ones that would lead them to hire, date, or discover the unique perspective of a person with a disability. By rarely showing adults, the programs ignored the reality that many disabled people grew up to lead rewarding lives.
The fact is, to live a life as someone with a disability requires resourcefulness and perseverance. Whether it is crossing a street, communicating with someone, figuring out a bureaucracy, using technology, or cooking a meal, disabled people have had to find work-arounds that offer value. Curb cuts on sidewalks, captioning on television, text-to-speech, dictation, all originally intended for people with disabilities have ended up offering benefits for nondisabled too. And where there’s a quirky question or original answer, disability is never far away.
What if everyone believed that the world is better because of disabled people?
To be sure, disability can bring great pain and hardship that will benefit from the research so celebrated on telethons. But equally beneficial is putting resources into basic healthcare for all Americans, programs that support people with disabilities to remain in their own homes, get a quality education, make our physical and electronic environments more accessible, and undo the afflictions visited upon millions of disabled people and our families by fifty years of telethon propaganda.
Put another way, let’s expand the idea of a “cure” to reach beyond an individual person’s medical condition to ask what needs to be fixed and who decides.
With Jerry’s passing, let’s acknowledge that while some believe he helped people with it is time to move on. With the telethons off the air, there’s more time and many more options to find a cure for shame, prejudice, and stigma.
Check out this previous blog on Telethons: