People We Love: Laura Hershey, 1962-2010

Today is Labor Day and we have another account from a former Jerry’s Kid. This time, it’s the legendary writer, poet, activist Laura Hershey. This is an account of her experience protesting at the MDA telethon, along with other disabled people across various cities in 1991. Copyright 1993 by Laura Hershey. The article also appeared in the Spring/Summer 1997 issue of Spectacle, published by Pachanga Press, Burlington MA.

Here is an excerpt:

You have to keep thinking about the money, because as everyone freely admits, that’s what this is all about. The money raised represents hope — year after year, promises of a miracle, the great cure that waits just around the corner. The money manifests faith — faith in the noble research scientists working desperately to identify, and eliminate, flawed genes. The money testifies to human love and compassion, ruthlessly sentimentalized in songs like “They’ll Never Walk Alone” which punctuate the twenty or so hours of the telethon.

The money is what justifies, even sanctifies, this annual ritual of tears and guilt. In 1996 the telethon raised over $49 million. That massive amount of money that people — young and old, rich and poor — feel compelled to donate, giving “till it hurts,” as Jerry Lewis insists — that money makes it very hard to challenge what is actually going on.

But there we were, back in September 1991, on Denver’s busy 16th Street Mall, challenging the Jerry Lewis Labor Day Muscular Dystrophy Telethon. Along with activists in cities around the country, including Chicago, Los Angeles, and Las Vegas, we were protesting the telethon’s portrayal of people with disabilities as helpless and pathetic. We were asserting publicly that this colossal begging festival, supposedly carried out on our behalf, is offensive to us and damaging to our efforts to become first-class citizens. Our protests were small, but they would become an annual tradition — much to the annoyance of Jerry Lewis and MDA.

For years we had been protesting against the barriers which keep people with disabilities from using buses, public buildings, and other facilities. Now we were taking on one of the biggest barriers of all: the paternalistic attitudes which prevail in our society, and which are reflected so dramatically in the annual telethon.

It is difficult to raise objections to something like the telethon; people are reluctant to disparage, or even entertain questions about, an effort which they perceive as fundamentally good, or at least well-meaning. That is understandable. It is an uncomfortable truth, in social work, in government activity, and in charitable endeavors, that actions which are intended to help a certain group of people may actually harm them. By harm, I mean — among other things — that these actions may reinforce the already devalued status of people with disabilities in this society. Looking closely and critically at the telethon, as some of us have started to do, brings up a number of issues which I feel are essential to understanding the status of people with disabilities as an oppressed minority group in America. These issues include: charity versus civil rights; cure versus accommodation; self-expression and self-determination; and the relationship between pity and bigotry.

The telethon has one goal — to raise as much money as possible for the Muscular Dystrophy Association, or MDA. Conventional wisdom says that the most effective way to do this is to appeal directly to the emotions of viewers — to move people so strongly, with stories of tragic suffering, that they will want to help “save Jerry’s kids.” Money is tight these days; charitable solicitation is a competitive business. Invoking sympathy sufficient to pry open wallets is not an easy task. But those orchestrating the telethon have a foolproof, not-so-secret weapon: children. Never mind that two-thirds of MDA’s 1 million clients are adults — the telethon is not in the business of trying to represent the real lives of people with muscular dystrophy. That’s not the point. The point is to paint a picture of a victim so tragic, and at the same time so cute and appealing, that viewers will be compelled to call in a pledge. This victim must also appear helpless, utterly unable to help him/herself, so that the giver can gain a personal sense of virtue and superiority from the act of giving. Finally, the victim must display something called “courage,” which does not resemble the bold, active kind of courage most people aspire to or at least fantasize about, in which one takes one’s destiny into one’s own hands and, by exercising will and choice, affirms oneself and/or one’s place in the universe. No, the “courage” demanded in this instance is the willingness to deprecate oneself; to accept other people’s versions of one’s own reality; to reject one’s own identity in favor of an eagerly anticipated cure (this is also called “hope”); to tolerate and even encourage the assumption that life with a disability is a life scarcely worth carrying on with, except for the generosity of Jerry Lewis and everyone involved in the telethon.

At the age of eleven, I was enlisted into this role of cheerful victim. I was a Poster Child. In 1973-74, I became a mini-celebrity, appearing at fundraisers throughout Colorado. I learned to smile whenever a camera appeared, and to say “thank you” — in other words, I learned to look, sound, and act cute and grateful. And on Labor Day, I became a prop in the TV studio where the local portion of the telethon was broadcast. To whole families, driving by to drop their contributions in a giant fishbowl outside the studio; to the camera’s blinking red light; to the anchorman who squatted next to me, holding a huge microphone in my face; to everyone, I gave the same cute-and-grateful act, because that’s what they wanted.

So I am no stranger to the telethon. And in the two decades since then, the telethon doesn’t seem to have changed much. I watch it every year, just to make sure. It’s still chillingly familiar. The sappy music, the camera close-ups of wistful faces, the voice-overs telling us about that person’s dream to walk someday, the tearful stories told by parents “devastated” by their children’s disability, and the contributors coming forward in droves — it was all just the same as I remember it.

But some things have changed; I have changed. I don’t know what my politics were as an eleven-year-old, if I had any. But my politics now — which are not merely political but also personal, spiritual, and practical — have led me to question and ultimately reject most of the values which the telethon represents.

For the entire article: http://www.cripcommentary.com/frompost.html

Later on September 4, 2010, she reflected on that year’s MDA telethon: http://www.laurahershey.com/?p=392

Check out a video of Laura Hershey talking about being one of ‘Jerry’s kids’: https://www.youtube.com/watch?v=o_OzeFshsQY

Laura Hershey (1962 – 2010) was a Colorado-based writer, poet, activist, and consultant. Her poems and essays explore diverse topics including body, nature, community, activism, social justice,  disability rights, equitable health care, community inclusion, feminism, and nonviolence. She authored Survival Strategies for Going Abroad: A Guide for People with Disabilities, and more than 100 of her articles and essays have been published in journals, anthologies, magazines, and on websites worldwide. She earned a BA in history from Colorado College, an MFA in creative writing from Antioch University Los Angeles, and was awarded an honorary doctorate of humane letters from Colorado College.

For more of Laura Hershey’s biography, writing and poetry, go to her website: http://www.laurahershey.com

Laura Hershey Digital Collection: http://laurahershey.omeka.net