Joseph Hubber

The MDA Telethon: Pity or Compassion

Jerry's Kids

Since 1966, the Jerry Lewis Labor Day Telethon has been the primary means of fundraising for the Muscular Dystrophy Association (MDA). While the MDA proudly notes the Telethon has raised more than $600 million to support programs on research, education, and service, some individuals with disabilities now take issue with the Telethon's format.

On September 3, 1981, Evan Kemp, Director of Ralph Nader's Diability Rights Center, wrote an article for the New York Times criticizing MD A's fundraising strategy for the first time. Kemp argued that the Telethon, with its emphasis on poster children and Jerry's kids, focuses primarily on children. In Kemp's words: "The innocence of children makes them ideal for use in a pity appeal." Kemp, who has a neuromuscular disease, also insisted that the Telethon encourages prejudices and that "These prejudices create stereotypes that offend our self-respect, harm our efforts to live independent lives, and segregate us..." The Kemp article, however, had little effect on MDA Telethons during the 80s.

Recently, a U.S. News and World Report article (September 14, 1992) noted that "By all rights, these should be glory days for MDA' s Annual Telethon." Never before has MDA-funded-research led to so many scientific breakthroughs in search for the cause of neuromuscular disease.

However, during the last two years, the MDA has had to face growing criticism from a small but vocal group who call themselves Jerry's Orphans. This group banded together in reaction to a September 2, 1990, Parade magazine article written by Jerry Lewis. Lewis portrayed what life would be like for himself living in a wheelchair, what Lewis calls "...that steel imprisonment I know the courage it takes to get on the court with other cripples and play wheelchair basketball... I realize my life is half, so I mustlearn to do things halfway. I just have to learn to try to be good at being half a person...."


The Lewis article outraged disability rights activists-some of whom are former MDA poster children. "No one is negat-: ing the research or the individual's desire to be cured," wrote Chris Matthews, cofounder of Jerry's Orphans-a loosely affiliated group who protested against the 1992 Telethon in 16 cities. What Matthews objected to was "the attitude that stresses, no matter what one does, life is meaningless in a wheelchair" (The Disability Rag, September/October, 1992). Jerry's Orphans fmd the current Telethon format unacceptable. They plan to keep working until the Telethon can be restructured so that is does not sabotage the hard work of those in the disability rights movement.

On an ABC Prime Time live broadcast (9/30/92), Lewis admitted to program host Chris Wallace that it is necessary to tug at people's heartstrings. Lewis explained that "If you don't tug at their heartstrings, then you're on the air for nothing." During the same program, Evan Kemp, currently Chainnan of the U.S. Equal Employment Opportunity Commission, stressed that Lewis' emotional message creates many problems for individuals with disabilities. Lewis countered by stressing that "my kids cannot go into the workplace. There's nothing they can do. They've been attacked by a vicious killer. I'm begging for their survival."

Ronald Schenkenberger, Director of Research and Patient Services Administration for MDA, notes that "last year's MDA TV vignettes portrayed a balanced program. They included not only heartwrenching stories of children, but also research accomplishments and highlights of adults who serve on the Task Force on Public Awareness." Schenkenberger states that Jerry' s Orphans have garnered enough TV and newsprint coverage recently to make the word pity an issue. Schenkenberger believes that "the difference between pity and compassion is nothing more than semantics."

Others come to the defense of MDA despite recent criticism. MDA was cited by Money Magazine (December, 1991) as one of the country's best-managed nonprofit health organizations. Sandra Swift, Chairperson of the National Council on Disability, awarded the Council's Outstanding Service Award to MDA's President Lois R West (1125/93). In presenting the award, Swift noted the Association's dynamic impact on raising awareness of disabilities.

The Quagmire

Does MDA's end justify its means? As Evan Kemp suggests, do telelthons reinforce old stereotypes of individuals with disabilities, thus hurting their struggle for more freedoms? Are the goals of telethons and other fundraising activities diametrically opposed to the goals of the Americans with Disabilities Act-i.e., to bring productive employment opportunities to millions of persons with disabilities?