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

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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.