Disability Fun Fact: We Don’t All Want to Be Saved

I don’t remember ever watching a Jerry Lewis Labor Day MDA Telethon, but apparently he was big-time dedicated to supporting kids with muscular dystrophy, raising over a billion dollars for the Muscular Dystrophy Association by the early 90s.

The first Telethon, airing September 5, 1966, brought in a staggering dollar amount in pledges for the time: $1,002,114

That first year, only one station, an independent one, broadcast the Telethon, hosted outside New York’s American Hotel. By 1976, the “Love Network” of stations showing the Telethon had grown to 213, and Ed McMahon had started co-hosting with Lewis. Other cohosts included Norm Crosby, Leeza Gibbons, David Hartman, Casey Kasam, Larry King, and John Tesh.

For most of its run, the Telethon ran 21 1/2 hours, ending at 6:30pm on Labour Day Monday. In 2009, it had 40 million viewers from around the world.

Pretty good, considering that criticisms of the Telethon started to emerge in 1992.

The Disability Community Speaks Up

The people running the Jerry Lewis MDA Telethon knew how to reach its goal of raising as much money as possible for the Muscular Dystrophy Association: show pictures of disabled kids and use a catchy slogan like, “Save Jerry’s Kids”. However, As the “Jerry’s Kids” in the pictures from the early telethons grew up, they became disenchanted with the Telethon’s methods for bringing in money:

• They objected to disabled people being used as a fundraising tool, with their images designed to evoke pity so that people would give money
• They objected to the underlying belief in the medical model of disability and its focus on curing Muscular Dystrophy rather than developing supports and reducing social oppression of disabled people.
• They wondered why the focus was solely on children, when plenty of adults with Muscular Dystrophy had needs as well.

Mike Ervin, one of “Jerry’s Kids” who grew up to be a disability activist, joined with other adults with muscular dystrophy to form “Jerry’s Orphans”. As a group, they protested the Jerry Lewis Telethon in 1991 and 1992. Mike made a film about this, available at The Kids Are All Right. He talks in this film about how the MDA books show that it doesn’t really need the income from the Telethon; it could fundraise using methods that are more friendly to the disability rights movement.

Lewis didn’t help, publishing an essay in Parade Magazine in 1990 where, as he tried to put himself in the shoes of a child who had to use a wheelchair because of muscular dystrophy, he called himself “half a person” twice. This, and other ableist language in the article, made advocates even more determined to boycott his efforts to “help”.

Professor Christopher Smit has even made comparisons between the Telethon and the American freak shows that ran from 1840–1940. Although he does concede that while the freak shows were purely profit-motivated, the Telethon’s proceeds were charitable in nature, he’s not the only academic to draw these comparisons.

A New Era

Lewis hosted the MDA Telethon for over 40 years. However, in 2011, after plans were set to shorten the Telethon to 6 hours and cut Jerry’s role to just singing the closing song, the MDA announced a couple of weeks before the Telethon that Jerry would not be part of the Telethon at all, and that he’d be stepping down at MDA Chairperson. Jerry wouldn’t talk about why with reporters because, “it’s none of your business.” Four celebrities shared co-costing duties that year.

In 2012, the Telethon, rebranded as “Show of Strength”, ran as a 3-hour event, and in 2013 and 2014 as a 2-hour “Show of Strength” event of mostly pre-taped performances. It was officially cancelled for 2015, though some stations continued to do local telethons.

Jerry Lewis received a Nobel Peace Prize for his work with the MDA.

Nothing For Us Without Us

Regardless of whether the Telethon was always entirely appropropriate in its approach to its subjects and its fundraising methods, Lewis seemed genuinely enthusiastic about wanting to help the MDA — it’s hard to fake entusiasm about giving up your Labour Day long weekend for over 40 years. He worked fundraising opportunities for MDA into other work he was doing, and in 2017, he appeared in a video plugging the MDA’s new website, saying that its work must go on. He was 91 years old at the time, and died later the same year.

Sometimes helping people is tricky. You can be 100% sincere about your desire to help and not realize that your delivery is doing more harm than good. I think that we’re all still learning about that, and about the fact that people can have very different perceptions of a person depending on their relationship to them. So not everyone is going to understand the different views about Lewis and why, as we can see from the comments on this article, that some people think he’s a hero while others obviously don’t.

I think the lesson here is that we always need to listen to the people we are trying to help — “Nothing for us without us.” What do you think?

Thanks for reading. Until next time — Sarah