Laura Hershey: Writer, Poet, Activist, Consultant Rotating Header Image


Last Word on the MDA Telethon (at least for this year)

Ego and Soul

Yes, the Telethon was bad again this year, at least the bits I watched. One thing that continues to amaze me is how big a role Jerry Lewis’ big ego plays, all the way throughout the Telethon. Here’s one late-night quotation that I bothered to write down:
“This child in the [Boston] Hospital had muscular dystrophy, and I went to see him, and he smiled when I walked into the room, and he grabbed my hand, and he said, quote, ‘I’m glad I got muscular dystrophy, because that’s why I met you.’ I rest my case. If there are naysayers out there, and if they’re uncertain as to the validity of my soul, trust me – it was a moment in time that takes me through the program in 2001 all the way through 2010.”

I don’t know anything about Lewis’ soul, “valid” or otherwise. I only know that his presentation of disabilities distorts reality, making it appear as though a cure for muscular dystrophy is both imminent and sufficient. In fact, what we need is a society committed to including and supporting all people with disabilities, regardless of particular diagnosis.

More Reasons to Disbelieve the Telethon

It’s not just the pity mentality that causes harm. As activist Nick Dupree argues in his blog, the Telethon creates an illusion that people with disabilities get everything they need, courtesy of private charity. As Nick points out, nothing could be further from the truth. Coordination and necessary equipment are sadly lacking, and vital home care and other services are being gutted in many states. And MDA itself doesn’t even provide what many people have come to believe it provides. Read the scanned copy on Nick’s site of the letter from the CEO of MDA, highlighting all the things they no longer offer to their clients.

Post Columnist Gets It!

Susan Greene just wrote an excellent column for the Denver Post explaining our objections.

20th Telethon Protest in Charleston

The stalwart activists of Charleston, SC protested the Jerry Lewis Telethon yesterday, just as they have for 20 years since the late great Harriet McBryde Johnson started raising hell about it in 1990. Here are some photos from the Charleston protest, and an unpublished letter to the editor by Harriet’s friend and colleague John Polito.

One More Word from Me

And here’s an brief video clip of me talking about the Telethon.

Speaking Out Against the MDA Telethon

It’s almost that time of year again when, wits dulled by sunburn and picnic overindulgence, some Americans collapse in front of their TVs and watch the Labor Day Telethon, sponsored by the Muscular Dystrophy Association (MDA). Some will be so fascinated or confused by the second-rate celebrity appearances and cheesy production values that they’ll stay glued to the set into the wee hours of the night.

Mixed in with the weirdness will be some subtle and not-so-subtle messages about life with disability. This is why so many disability rights activists will either shut their eyes and try to pretend it’s not happening, or will take a little time away from more pressing issues to complain loudly about the Telethon.

There are numerous problems with the MDA Telethon. It’s based on the premise that disability is a terrible fate, that people never stop grieving a diagnosis of a neuromuscular disorder. In the Telethon world, disabled people might go to school or work, but only to take their minds briefly off of their tragedy, and to pass the time until the day — just around the corner, as it’s been for over 50 years of Telethon history — when they will be cured. On that miraculous day, people “stricken” with this “terrible disease” will get out of their chairs and walk into a normal, happy life. Until then, pity is the name of the game.

This morning I spoke about why we protest the MDA Telethon on a New York City radio program, The Largest Minority. The host is T.K. Small, a Brooklyn attorney and activist. Other guests also discussed the Telethon, including Professor Beth Haller from Towson University, a media expert and author of a new book entitled Representing Disability in an Ableist World; and Paul Timmons of Charleston, SC, who will take part in a Telethon protest happening there next weekend in honor of our late friend Harriet McBryde Johnson. Harriet always delighted in being a thorn in MDA’s side, brilliantly criticizing the Telethon, and I met Paul at her memorial service two years ago. (Paul’s primary, very worthy project is Portlight Strategies Inc., which provides disaster relief to disabled and other underserved communities.)

T.K., Beth, Paul, and I are all involved in a range of important, even urgent disability rights causes. But once a year, many such activists feel a need to respond to the seemingly trivial, annoying antics of a bunch of misguided entertainers. We have to remember that the MDA Telethon still reaches a lot of people out there in TV-land. We have to be there to articulate a different view of our lives as people with disabilities.

To download and/or listen to the show in MP3 format, click here.