Monday, September 6, 2010
Charleston, South Carolina

Laura Hershey
Susan K. Dunn
John R. Polito

Charleston's 20th MDA Telethon Protest

by John R. Polito

Charleston's 20th anniversary of Harriet McBryde Johnson's protest of the Jerry Lewis M.D.A. telethon
Alan Snockley, Michael Morrison, Carol Dotterer, Anna Snockley,
Susan Dunn, Walter Biffle, Alison Piepmeier, Marybelle Biffle-Piepmeier,
Ron Kaz, John R. Polito. Not pictured: Jim Campbell and George Hopkins.

Jim Cambell protests at the 20th Charleston Jerry Lewis MDA telethon protestIs it coincidence that the 20th anniversary of the Americans with Disabilities Act (ADA) is also the 20th anniversary of Harriet McBryde Johnson's annual protest of the MDA's Jerry Lewis Telethon?  Although Harriet is no longer with us to ask, I don't think so.  

Thousands of physical barriers to savoring the full beauty of the city she so loved, imagine her elation in celebrating a new civil rights law that promised to fight the segregation, isolation and discrimination felt by the 43 million Americans who in 1990 lived with at least one disability. While the ADA sought to remove barriers and unite us, Harriet knew that the MDA was working overtime in erecting pity barriers that divide.

Forget for a moment the worthiness of the MDA's cause. Instead, reflect on the consequences of pity based fund-raising that gets viewers to dig deeper and give more by making them feel superior and different, by using differing muscular abilities and muscle disease to foster sorrow, pity and tears.  

Imagine painting life with muscular dystrophy as hopeless and dark unless the MDA can raise enough money to "find a cure." Imagine the indignity of someone handing you money on Labor Day simply because your means of mobility is a wheelchair. As Harriet often asked, what is the cure for stigma?  

What the MDA does not tell viewers is that thousands with muscular diseases live rich and rewarding lives, that MDA's 45 year "cure" theme isn't their objective, that for most with muscle diseases that the annual telethon has probably done more harm than good. Imagine a job interview where the interviewer's initial reaction is pity and sorrow while wondering how you've lived so long, or how long you have left.  

George Hopkins holds a sign reading 'Say No to MDA, Pity Kills, Spirit and Unity during Charleston's 20th annual protest of the Jerry Lewis MDA Labor Day telethon.MDA pity and cure solicitation doesn't just rob those with disabilities of income opportunities that each year are probably in excess of the telethon's final tote board. Imagine the loss of self esteem experienced by a young child with MD who actually starts believing the MDA's message that disability, contentment and happiness cannot coexist.  

Harriet titled her first book "Too Late to Die Young." In it she recounts the telethon's impact upon her when an MDA advertisement announced that "Little Billy's toy soldiers have lost their general." By the time she was five the MDA had her thinking of herself as a dying child. Reflecting on whether or not to start school she thought, "When I die, I might as well die a kindergartner."  

Harriet was outraged that Jerry Lewis had referred to her means of freedom and mobility, her wheelchair, as "steel imprisonments," that he'd labeled disabled kids as "mistakes" who "came out wrong" and "half persons," and his recorded comment that if "you're a cripple in a wheelchair and you don't want pity, stay in the house!"  

What the MDA seems to have missed is that if in a wheelchair, disability based stigma and discrimination have the same isolation and stopping power as a sidewalk without a curb cut, or a job interview inside a building with a stepped entrance.

Harriet McBryde Johnson at a free speech rally on September 18, 2005It's why today we again stood in protest at the intersection King and Market in downtown Charleston, South Carolina. While we didn't remove any of the single step barriers forbidding wheelchair entry into stores up and down King Street, we left knowing that today we'd opened a few minds to the unseen harms flowing from M.D.A. pity and cure marketing tactics.  

Harriet's final protest flyer suggested an alternative, that charity should be rooted in solidarity, not pity, that at some time in our lives we all need help. It isn't that we're pitiful or helpless but that we've encountered circumstances bigger than ourselves. "Why must people beg for the help they need," she wrote, "Why doesn't a caring and humane society do the hard work to meet those needs routinely?"  

"People with disabilities don't want pity," Harriet wrote. "We want what all people want. Equal rights and equal access. A bed to sleep in, 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 fabric of a democratic community. The help we need to give our gifts to others."  

Charleston and the disability rights movement lost a beautiful friend, mind and woman on June 3, 2008. Today, those holding protest signs stood united with Harriet in belief that a just society does not divide and isolate but seeks inclusion, integration and participation by all.

Yes, her soldiers lost their general, but they did not lose her cause.  

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Article written September 6, 2010 and page last updated December 28, 2013 by John R. Polito