“We’re not his kids, we’re adults, and we’re our own people”: The Trouble with the Jerry Lewis Telethon

Today is Labour Day in Canada and the US, which for many people means the end of the Labour Day Weekend Jerry Lewis Telethon. Wikipedia conveniently describes the Jerry Lewis Telethon so I don’t have to:

The Jerry Lewis MDA Telethon (also known as The Jerry Lewis MDA Labor Day Telethon and The Jerry Lewis Stars Across America MDA Labor Day Telethon) is hosted by actor and comedian, Jerry Lewis to raise money for the Muscular Dystrophy Association (MDA). It has been held annually since 1966. As of 2009, the telethon had raised $2.45 billion since its inception. It is held on Labor Day weekend, starting on the Sunday evening preceding Labor Day and continuing until late Monday afternoon, syndicated to approximately 190 television stations throughout the United States.

On the surface this probably looks like a good thing, but digging a bit deeper: For many people, this is one of the few times they’ll see images of people with disabilities on their t.v. screen (and from a noted authority and beloved celebrity), and the entire thing is one drawn out pity parade.

Since 1991, protesters, including Laura Hershey and Mike Irvine, have tried to raise awareness about the way that the Jerry Lewis Telethon, and Jerry Lewis himself, treat actual adults with disability, and have discussed how these sorts of pity parades affect the public perceptions of people with disability. In 2001, Hershey wrote:

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.

I’ve written about my disdain for both the Telethon and for the praises Lewis gets despite referring to people with disabilities as “half-persons” who should “stay at home”, and I think this is still an idea that people find very challenging. It’s easier to view these sorts of fund raising telethons as doing Good Things. They are supposed to, after all. That it’s still leaving people with disabilities begging for basic rights, access, and assistance that shouldn’t be necessary in this age of the Americans with Disabilities Act (ADA) and Accessibility for Ontarioans with Disabilities Act (AOWD) isn’t comfortable to think about. That the main use of these funds is for finding a “cure” – by which they mean a pre-natal test – rather than assisting families in purchasing wheelchairs or renovating a home to make it wheelchair accessible, or in assisting people with disabilities in getting support during or immediately after a move seems to surprise people. Your money isn’t going to help actual people with disabilities. It’s going to help the Muscular Dystrophy Association, and to aid Jerry Lewis in his continued insistence that he’s a humanitarian. These are not really the same things.

Many people with disabilities have written about their perceptions of these telethons, and the damage they do, as well as the issues with giving a humanitarian award to a man who treats actual people with disabilities with such disdain. Hershey’s most recent columns are Speaking Out against the MDA Telethon and Laura’s Labor Day Weekend Column. Liz Henry wrote last year about her dose of morning rage regarding the telethon, and there are many links there that highlight the issues around Jerry’s Kids. There’s also the 2007 Blogswarm, Protest Pity, which features more than 35 blog posts about the Telethon and the Protests. You can also read From Poster Child to Protester, which may be the first thing I ever read about the protests and the Issues with Jerry Lewis.

Sometimes, though, the best way to combat the pity parade is to show people with disabilities talking about their lives, and their lived experience. Laura Hershey made this video as part of the “It’s Our Story” Project. Transcript follows:


The ‘It’s Our Story’ titles roll while tinkly piano music plays. White symbols of sign language and a person in a wheelchair flash against the background, which is suggestive of a US flag, with the continental United States in the blue square instead of the usual 50 stars.

The video opens on Laura Hershey, a powerchair user wearing a nasal cannula and glasses. The title of the video is “Jerry’s Kids”, and I believe she’s referring to the group “Jerry’s Orphans”.

Laura: That’s actually a group that was started in Chicago by Mike Irvin, Chris Matthews, and several other people. And I worked with them a lot organziing these protests nationally. I think what the name says is that Jerry Lewis doesn’t have the right to claim us as his quote “kids”, especially as he’s not interested in our perspective. He completely trashes people who question or challenge the telethon approach. He’s attacked us in the press, calling us ungrateful, claiming that he bought us our wheelchairs which is, you know, completely untrue.

You know, whatever ego trip he gets thinking of himself as our saviour, or our daddy, or whatever it is he thinks, we reject that.

We’re not his kids, we’re adults, and we’re our own people. We don’t belong to him.

8 thoughts on ““We’re not his kids, we’re adults, and we’re our own people”: The Trouble with the Jerry Lewis Telethon

  1. Last weekend I was out and saw a large contingent of local firefighters shilling for the MDA. The way it was framed (“Help Jerry’s kids!”) was pretty horrifying. Because the only PWD worth paying attention to are children, apparently. Moreover, the implicit casting of all kids with MD as “Jerry’s kids” is incredibly paternalistic and problematic. They’re their own people. They don’t belong to some smarmy, ableist celebrity who clearly doesn’t care about them actually accessing society as equals. Lewis’ framing of himself as some kind of paternalistic benefactor to kids with disabilities is disgusting.

  2. Also, there are a lot of parallels that I’ve noticed between the MDA and Autism Speaks. It’s uncanny, really.

    The latter organization makes it sound like the money they raise will be used to help autistic people in the here and now. And from what I’ve seen… it usually isn’t. The money helps fill Autism Speaks’ coffers, primarily; helping autistics is, at best, a side effect.

    And the scenario you mentioned of helping someone move house… in Autism Speaks’ case, that one isn’t even hypothetical. One of their outreach arms promoted their cause by mentioning a family who’d lost their home in New Orleans, and then refused to help that same family move.

  3. *nodnod* Yeah, the post I made at Bitch drew parallels between the two. With the MDA, I’m not sure if it’s a parent-focused organization, though. Certainly AS is.

  4. I don’t know a huge amount about Jerry’s Kids/MDA (although I did watch the Jerry’s Orphans documentary The Kids Are All Right, which is really good and can be downloaded free from the website I linked to) but if an organization only uses rhetoric about kids aren’t they implicitly parent-centered?

  5. I admit, I haven’t looked at their rhetoric beyond the Telethon, but I suspect you are right, AWV, that they are basically a parent-centric organization.

  6. Thank you so much for this post. I wasn’t familiar with the Telethon (I’m not exactly in a socio-economic bracket that stays home on Labor Day) nor the MDA, and it was good to learn a lot about both topics reading the links from people with MD. The articles, especially “From Poster Child to Protestor,” were really eye-opening, even in regards to my own disability and disability in general–I’d never thought about the sinister aspects of society wanting a “cure” before (to get rid of the problem and not have to accommodate/think about it).

  7. While I was researching a presentation I was doing on disability rights activism and media representations some months ago, I came across a list of demands from activists and was struck by the similarities to what autistic adults are asking for from Autism Speaks. In particular, activists asked MDA to stop exploiting children who can’t consent in their fundraising materials. Because, no, having one’s parents consent for you is not the same thing. Similarly, one of the major objections to the “I Am Autism” video (for me, anyway) is that it exploits autistic children (and even worse, adults, or so it would seem) in the service of portraying them as nightmares and burdens. Children sell, as is seen throughout the charity sector, but at the cost of denying them autonomy and control over their own image. I guess it’s just easier and more acceptable to “speak for” children–and many disabled adults, particularly those with intellectual disabilities and/or communication impairments. It’s quite troubling.

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