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

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.

6 Comments

  1. Jeanne Donnelly says:

    To whom it may concern:
    My name is Jeanne Marie Donnelly. I am also a disabled citizen. I belive in speaking out when the rights of the disabled are infringed upon. Trashing the MDA and the untireing efforts of Jerry Lewis is far fetched. The Telethone, in my openion, brings awareness to the public and to educate them about the harsh realities of this disease. You know as well as I do there is no way to understand or prepare for the ramifications of any disability. If Jerry Lewis and his MD families can tell their heartfelt stories to the vast audience he reaches in order to obtain the financial resourses needed for scientific research to put an end to these nuro-muscular diseases so be it. Without people like him and generous donations we would not have been able to have made the strives we have. There are always pros and cons for every contriversy I myself am for any organization that is for the greater good.
    sincerly,
    Jeanne Marie Donnelly

  2. Gimp Afire says:

    I agree wholeheartedly with Jeanne. The MDA is a great organization, their telethon raises money to support vast amounts of research and individualized medical care and support that helps an enormous amount of hurting individuals.

    I understand that many people think disability is a horrid thing to be shunned, and you’re trying to counter this, but come on! Many of the people the MDA supports WILL DIE SOON without a cure… and you have the gall to tell them they do not have the RIGHT to ask for help?!

    It’s not like MDA is telling disabled people they need to go on camera and give a huge sob story for the world! Disabled people have rights, and one of those rights is to share their story. You don’t have to share their views, but you should be ashamed of trying to stomp all over them.

    As to the money-raising aspect, and using those stories to gain support… would you prefer they just get up there and ask people to give money without telling them what it will be used for? That’s ridiculous for any charity.

    You don’t have to agree with MDA. You don’t have to ask for help from them. You don’t have to benefit from any of their research. If their research ends up finding a cure for your condition, or a medication that will significantly improve your daily life and abilities I hope you’ll stand on your principles and refuse it.

  3. T.K. Small says:

    As usual, another great blog entry! However, I have to offer one slight correction. I share hosting responsibilities for the program with Brendan Costello and Lawrence Carter-Long.

    Also, in terms of the two previous comments, Laura and I view disability from a civil rights standpoint, which is completely different from the charity/medical model. Without speaking for Laura, I have nothing against research and the advancement of medical care. But how that money is raised has a consequence of the larger disability community. If either of the commenters had listened to the interview they might have understood the criticism. Take a listen, you might learn something.

  4. Clara says:

    I agree with TK and Laura. The ends are not justified by the means. That is why you find people with all kinds of disabilities protesting the MDA telethon. Those messages of pity and portrayal of lives solely in terms of inability apply to everyone with a disability. The pitying/charity aspect of the MDA’s message is at the heart of ableism. I, however, do have an issue with the vast amount of resources put into the medical system rather than into something that could have a much more tangible and beneficial effect on the lives of people with disabilities. A true “cure” is not realistic and sometimes in our medical system proposed “cures” are worse than the disease. Medical advancement is usually presented from the perspective of the medical community and rarely reflects the true effect on lives. I don’t watch the telethon because as an able-bodied person the MDA’s messages doesn’t do me any good. It prevents me from understanding my disabled friends as people and it plants a message that would be detrimental to my own identity in the event I become disabled.

  5. […] since we’ve organized a direct action protest, the Internet continues to provide us with opportunities to educate and inoculate people against the Telethon’s pity […]

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