Protesting the Telethon in Harriet’s honor
Determined not to let the cause die with Harriet, some of her friends and colleagues and supporters organized the 18th annual Charleston protest against the Jerry Lewis MDA Telethon this Labor Day. Here is a report and photos, courtesy of John Polito:
Harriet McBryde Johnson’s 18th Annual Telethon Protest
by John R. Polito, protester – September 1, 2008
While Charleston lost Harriet on June 4, it did not lose the causes she championed. Today, thirteen protesters braved intermittent rain and the absence of their field general to remind Charleston why the Jerry Lewis MDA telethon causes vastly more harm than good. In Harriet’s words, “Lewis and the MDA have built an empire represented by the telethon tote board. The empire is based on pity. Pity sets people apart, makes one group feel superior to another. Pity makes people feel good – because they’re not like us. And when they feel that way, they are inspired to send money – to make us more like them, to ‘cure’ us of our differences, or even to prevent our very lives.”
Pity breeds stigma. Stigma breeds disability discrimination. Jerry and the MDA continue to exploit, work and worry young children by teaching them that their lives cannot rich, full and rewarding unless people send the MDA money for research, so the MDA can discover a way to cure them. Jerry, what’s the cure for stigma? What has been the collective psychological damage inflicted upon young children with muscular dystrophy, after 42 years of MDA “cure” telethons and still no cure?
As Harriet asks, “Why must people beg for the help they need? Why doesn’t a caring and humane society do the hard work to meet those needs routinely?”
Most of downtown Charleston’s Labor Day sidewalk traffic is tourists. As they approach, we focus our signs upon them. As they draw near, we ask if they’d like to read or learn more about our protest. When told that we’re protesting the Jerry Lewis MDA telethon the most common response is, “why?” For the first time ever they reflect upon the full impact of the MDA’s pity ploy and “hopeless unless cured” message upon both children diagnosed with muscular dystrophy, and those free from it. The most common response is, “I’d never thought about it that way, before.” Most walk away wondering why our national government does not adequately fund disease research and care, so that pity based tactics are no longer needed.
“People with disabilities don’t want pity,” wrote Harriet in last years protest flyer. “We want what all people want. Equal rights and equal access. A bed to sleep in, a place to call home. A way to get out of bed, go out in the world, and live a life. Freedom from prejudice and poverty and confinement in institutions. Education and work. Access to medical care and the tools to stay healthy. Integration and inclusion in the the fabric of a democratic community. The help we need to give our gifts to others.”