Jerry always ended the Labor Day Telethon by singing "You'll Never Walk Alone."
By Catherine Kudlick
Jerry Lewis is back in the news with a truly bad movie the same weekend that his MDA Telethon would have been 50. America still suffers from the *crippling* effects of the Labor Day event that the Muscular Dystrophy Association (MDA) finally ended last year. True, the extravaganza that raised over $2 billion for disability-related charity helped some people. But the money came at a cost that continues to do harm to those it claimed to help. It even hurts those who haven’t yet given disability much thought.
This weekend, on what would have been the program’s 50th anniversary, it’s time to undo the damage by announcing that a cure is at hand: not for disability, but for approaching people with disabilities.
Imagine being stuck in the bright lights where you’re asked to perform a degrading spectacle, not only for complete strangers but for those you love. And imagine watching the programs living with a disability in a world lacking positive portrayals in film, on television, in newspapers, or magazines. You had no examples of people like you going to school, being inventive, falling in love, pursuing careers, taking care of loved ones, adding value.
A combination of "television" and "marathon," telethons first took root in the 1950s to raise money for charity. Initially, they were local and lasted just a few hours. But quickly they grew into a national phenomenon that promised a yearly diet of cheesy entertainment, infomercials, and tear-jerking pleas for donations. In the pre-cable, pre-internet era, telethons had a monopoly. Hour after hour, year after year, Americans unthinkingly welcomed these demeaning images into their living rooms. And even if you didn’t watch yourself, your doctor, teacher, senator, news anchor, waiter, or that random person walking down the street had. Disabled or nondisabled, you had few options for how to imagine being a member of the one minority anyone can join at any time due to an accident, illness, or simply by getting older. These lessons still influence how we think about nearly 1 in 5 Americans today.
To be sure, telethons provided equipment and funded research. And they put disabled people on stage with celebrities like Jerry Lewis, a big contrast with traditional practices of hiding them away.
This help came at a price: personal humiliation and ongoing discrimination. Disabled people doing something cutting-edge or, most radical of all, living an unremarkable life with its usual frustrations and joys, didn’t invoke pity to raise money. Success meant erasing disability and disabled people by making them struggle to function like nondisabled people while they waited for The Cure.
But until The Cure comes - assuming that it does or that we even want it - how good can a disabled person’s life possibly be after a half century of this despicable media diet of hardship and pity?
Even as they helped eliminate some genuine pain and suffering associated with disability, the Labor Day extravaganzas made it too easy for well-meaning people to think they’d done enough by donating once a year. The programs never asked why the world’s wealthiest nation needed to hit up individuals at home to make up for a missing safety net. And from their bully pulpit, telethons never confronted how stigma and prejudice compounded physical hardships.
Little wonder that after a half century monopoly, the telethon mindset still seeps into today’s news stories,movies, and other media. Little wonder that we pass legislation that invokes death with dignity before asking what might bring dignity to a life in crisis.
This brainwashing helps explain why today just over one third of people living with disabilities in the community has a job compared with three quarters of those without disabilities, a figure that’s even lower for those with conditions shown on the programs. After all, any of us who grow up in a world shaped by telethons would have little reason to consider how someone with a disability could actually do a job without being a danger to themselves and others.
But The Cure is within reach!
A rights movement that started in the 1960s and 70s that’s gaining traction on social media offers more diverse, intriguing views of people with disabilities. Access to built-in assistive technology for reading and communicating, along with inexpensive, quality equipment to make films, means disabled people are now getting to tell their own stories that counter those of the telethons.
There’s still a long way to go, especially because disability and poverty are intertwined, which means the very basics are lacking. But a post-telethon appreciation for the lives of disabled people can pave the way for new initiatives and more resources.
This Labor Day weekend, replace those telethon hours with beginning your own re-education. Check out this year’s Paralympics (starting September 7) to discover people playing new sports and using innovative techniques to master familiar ones. Explore Story Corps’ Disability Visibility Project for thousands of fascinating accounts. Or discover local film festivals like Superfest and performances like Sins Invalid and Axis Dance. Inform yourself about what our schools teach about disability. And while you're at it, learn more about telethons!
Above all, if you find yourself or anyone nearby reaching for a tissue around a disabled person, ask yourself why.
Then help bring about The Cure by sharing this post with two uninformed, sympathetic people.