Laura Hershey's Whenever Web Column

Column from September 2, 2002

Two Very Important Questions (VIQ) about the Telethon:
Why Protest? and Who Benefits?

Copyright 2003 by Laura Hershey

It's Labor Day morning, and I'm watching the MDA Telethon as I do every year. People ask me why I watch. Isn't it painful? Yes, it certainly is. But I watch anyway -- not the whole thing, but enough of it to see what they're up to. This is why I watch: If I'm going to protest something, I feel obligated to know what it is I'm protesting.

And I will be protesting -- as I do every year. I'm tired of doing it, and I have a lot of other things I could be doing -- work, play, relaxation. Instead, I'll be with friends and comrades, carrying signs and passing out flyers to passersby, most of whom will respond with bafflement, followed by curiosity then, I hope, by a glimmer of understanding. Most people, I've found, are open to our point of view. They just haven't thought about it before.

Watching the Telethon this morning, I see again why we protest. Jerry Lewis himself is only a small part of the reason. He's both maudlin and arrogant, and condescends like crazy to the people whom he calls his kids.

But there is so much more about the Telethon the troubles me. This year, I'm particularly aware of a recurring theme which I realize has been there all along. It's a theme of contingency, of human potential on hold. Time after time, the Telethon broadcasts this message: We must help MDA find a cure, so that people affected by neuromuscular disease can eventually live full lives.

I watch an interview with Mattie Stepanek, a very bright and articulate child who has become a best-selling poet. I admire him, and figure he will eventually outgrow his hero-worship for Jerry Lewis. As always, he comes across as upbeat and intelligent. He describes his dreams for his life -- to travel the world, to become a peacemaker, and to have children of his own. This is where we, the viewing public, come in. We must contribute money toward research for a cure, so that Mattie can one day fulfill his dreams.

The implication of this is obvious. Mattie's success, fulfillment and happiness depend entirely upon eliminating his disability. He cannot be who he is, a disabled person, and also achieve his goals.

I want Mattie, and the world, to know that's not true. He has already achieved so much, and will continue to do so as long as he lives. I do understand that his health is precarious, but no one is guaranteed an unlimited lifespan. He may or may not live a long life, but what he does with his days and years should not be restricted by negative assumptions, stereotypes or prejudice. If anything, the viewing audience should be urged to work for full accessibility, comprehensive support services, and other social conditions that will allow Mattie to fulfill his great potential.

Watching this Telethon brings up another question: Who is the Telethon for?

In its publicity materials, MDA calls the annual Jerry Lewis Telethon a "Labor of Love." Most viewers, donors, volunteers and even skeptics assume that the Telethon's main purpose is to help children and (somewhat as an afterthought) adults with neuromuscular disabilities. The benevolence, the one-way selfless giving, serves to justify the crude sentimentalism and the crass exploitation of disabled people's lives.

I'll grant that Telethon giving is, in fact, primarily altruistic on the part of many of the individuals involved -- call-in contributors, rank-and-file firefighters and labor union members, youth groups and volunteers. These people act based on the mistaken belief that their efforts will, first and foremost, "help the disabled." They don't usually think about the harm the Telethon does -- the affront to our dignity, the chinks in our morale. Or if they do, they rationalize these negative consequences by invoking the benefits that will surely accrue to people "afflicted" with MD, like camps and cures.

Here's a question worth asking, however: Who are the real beneficiaries of this expensive extravaganza? Who is it all for?

Maybe it's for the third-rate "celebrities" who parade across the Telethon stage every year, artificially resuscitating their gasping careers. Look at the lineup of luminaries -- Glen Campbell, Carrot Top, Chicago, Tim Conway & Harvey Korman, Phyllis Diller, Jack Jones, Maureen McGovern, Nancy Sinatra, Yakov Smirnoff, and Jim Stafford. And those are the ones you've actually heard of.

It's certainly for Jerry Lewis himself. He's pretty sick now, but he's still on a massive ego trip with this Telethon. I tried keeping track of the number of times he referenced himself during his on-camera speeches -- "the firefighters have been with me all these years, helping me raise money for my kids," etc. -- but I lost count.

Ultimately, though, I think the main beneficiaries of the Telethon are business owners. Like so much else in our society -- like party politics and accounting rules -- the Telethon is geared to help the rich get richer.

The following comes directly from MDA's Telethon website:

It's good business to do business with MDA. The Association's programs can:
*Enhance your company's public image;
*Boost employee morale;
*Draw attention to a product or service;
*Contribute to an increase in sales.

What more evidence do we need to show that the Telethon is fundamentally a capitalist enterprise?

I hope that as activists continue our educational campaigns, more and more people will see the harm that the Telethon does to disabled people's rights and dignity. The corporate sponsors may have a vested interest in promoting pity for profit -- but the rest of us have more to gain from cultivating social responsibility, access, and real respect.

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