By: Cathy Kudlick
The Muscular Dystrophy Association (MDA) will proudly revive its iconic Jerry Lewis Telethon on October 24. Coming in the midst of a pandemic and polarized political climate, the decision is both a brilliant move and a blow to the disabled people who make up 1 in 4 Americans.
Everyone knew of the extravaganzas that dominated American television each Labor Day weekend in the 1960s through early 2000s. A blend of “television” and “marathon,” the variety shows featured cheesy comedy, magic acts, gospel choirs, big name entertainers, and CEOs with household names who joshed with emcees like comedian Jerry Lewis as they celebrated rising donation numbers on giant glistening tote boards.
By many measures, this is a perfect time for a revival. People across America are anxious, depressed, and bored. An opportunity to support scientific work that leads to understanding disease while improving someone’s quality of life seems refreshingly non-partisan and humane. Not only that, but according to MDA, over a half century Jerry Lewis raised over $2 billion for research, equipment like wheelchairs, and life-changing summer camps for kids with disabilities.
So why are many disabled people and our allies worry that the telethon’s revival could do more harm than good?
The simple answer: despite significant gains symbolized by the 1990 Americans with Disabilities Act (ADA), these fundraising efforts draw on outdated stereotypes that rob us of dignity, and ultimately of options. The program’s return threatens precarious gains on mainstream TV with shows like “Speechless” and “Glee” starting to chip away at telethon-inspired ideas directly descended from pitiful Tiny Tim and freak shows that displayed human oddities for profit. Because telethons set a stage with stories scripted by the nondisabled, we rarely get to be heroes in stories of our own telling, which leaves us one-dimensional, damaged strangers.
While on the surface the October 24 event may look updated with today’s latest tech, keeping the name and favorably mentioning Lewis (abruptly fired from MDA in 2012) suggests little has changed. We’ll be pleasantly surprised to find evidence of boldly-expressed lessons learned from the disabled people who protested against being used on the shows to inspire pity and who condemned Lewis for his contempt for disability rights; a-political framings of hopelessness and tragedy are hard to shake when it comes to disabled people, especially after decades of repetition in successful fundraising.
Here’s the thing: attitudes like these sneak in unawares, for people with and without disabilities. They’re passed down through generations to media influencers, to presidents and policy makers, to teachers, to doctors, and to potential dates. They surface in too many Hollywood hits where people with disabilities (played by non-disabled actors who unnervingly often win Oscars) are angry, sad, bitter, but “fortunately” choose suicide. They arm the playground bullies and fuel the giddy horror of TikTok’s recent “New Teacher Challenge” where parents shared images of their own children reacting in horror after seeing a photo of someone’s facial disfigurement and told this would be their teacher.
Let’s face it: stories that inspire donors to give money to seek a cure for childhood diseases aren’t the ones that convince those same donors to hire, include, date, or learn more about the person with a disability they’ve just met. Telethons have no incentive to show the resourcefulness people with different disabilities bring to crossing a street, communicating, figuring out a bureaucracy, using technology, cooking a meal, or framing ourselves as competent to someone unaware that they’ve been brainwashed by telethons.
In the spirit of a truly forward-looking telethon that would improve more than a handful of disabled lives, here’s my dream for the October 24 event. It would raise money to undo the afflictions visited upon millions of people with disabilities and our families by fifty years of propaganda. To test my theory that telethons need disabled people more than disabled people need telethons, it would be run by and for people with disabilities — nothing about us without us! It would seek a cure for bullies and shame and prejudice. It would foreground our unique expertise on the fragile points in the healthcare system and government assistance programs. It would educate viewers about how much more rewarding it is to live in solidarity and interdependence than clinging to false dreams of independence. Alongside pain and frustration, it would share the exuberance and joy of the disability community.
If so moved, give to the MDA Telethon on October 24. But don’t be lulled into thinking “mission accomplished.” Pair this with learning more about what disabled people are doing in the arts, politics, and education to make society better, then donate to them too. Fighting for a medical cure is an especially worthy cause in a pandemic. But until that cure arrives, so is supporting dignity, opportunity, and a decent quality of life for every human being.