By Harrison Rainie and Katia Hetter
Not long after John Kennedy entered the White House in 1961, his sister Eunice Kennedy Shriver began one of the most heartfelt campaigns any Kennedy ever undertook. She argued to family members that it would be immensely helpful if they revealed one of their most closely guarded secrets: that one of their own, the president's sister Rosemary, was mentally retarded. It took more than a year to bring the idea to fruition, and it finally won sanction after the clan's two central figures blessed it: Patriarch Joseph Kennedy made clear he could live with the disclosure as long as President Kennedy supported it. In the spring of 1962, Eunice told JFK she wanted to write a piece for the Saturday Evening Post about Rosemary, and he responded: "That's fine. Let me see it first." The article appeared in the September 22 issue, and it was one of the biggest moments in perhaps the most important contribution the Kennedys made to the nation.
What is stunning about the Kennedys'--and most particularly Eunice Shriver's--role in changing the way the world treated mentally retarded people is how little noticed it has been. It is difficult to recall today the life such people faced in the generation before Kennedy's administration. Scores of thousands were warehoused in institutions located in the most remote sites available. That was especially true of women because it was thought to be important to keep them from getting pregnant and creating another generation of "idiots, morons, imbeciles"--all terms of scientific precision used to classify different levels of retardation. One surgery textbook recommended that "mongols" (those with Down's syndrome) not be given life-saving procedures because, the text implied, they were subhuman, and some were allowed to die.
Families like the Kennedys that kept retarded family members at home as they grew up were the objects of considerable scorn. Rosemary was born at the height of the worldwide flu epidemic in 1918 and, though no one was ever sure what caused her relatively mild retardation, it became a difficult fact of life by the time she reached school age. Though the family tried to make things as normal as possible for her, she fell far behind in the hypercompetitive environment as she got older. As she became a young woman, her problems grew and she began to lash out violently on occasion.
The lobotomy. Eventually, Joseph Kennedy was told that there was a "miracle" surgical procedure called a prefrontal lobotomy that could help Rosemary. Without consulting anyone else in the family, he ordered the operation in 1941 and it was botched. The surgery was supposed to leave her mental functions relatively intact while eliminating her aggressive behavior. Instead, it rendered her zombielike and she was moved to St. Coletta's in Jefferson, Wis., where she still resides. Until Eunice's magazine article, the family told inquiring reporters that she was in a convent.
Joseph Kennedy was tormented by the fate of his daughter. In 1946, he created the Joseph P. Kennedy Jr. Foundation (named after his deceased war-hero son) to help retarded people, and in the mid-1950s, he asked Eunice to determine how the foundation's grants could best be used. She traveled the nation talking to the small number of experts willing to buck the forget-'em philosophy and visiting the notorious "snake pits" that housed most retarded Americans. "There was a complete lack of interest in them and lack of knowledge about their capacities," she says. "They were isolated because their families were embarrassed and the public was prejudiced."
Not surprisingly, Eunice Shriver--the one family member who continued to call her big brother "Jack" after his election--hammered at the issue as JFK entered the presidency. He responded by setting up a task force headed by eminent educator Leonard Mayo to devise a legislative program to attack mental retardation. The president named White House deputy special counsel Myer Feldman to work with Eunice and the panel.
Eunice Shriver was clearly the commander of the administration effort. When her friend and panel member Robert E. Cooke suggested the creation of new university-affiliated research centers, she stuck it in the final plan. She and Feldman helped broker disputes on the panel between the "hard" scientists, who thought retardation was best addressed as a genetic and prenatal problem, and their "soft" colleagues, who favored an emphasis on education to help improve the lives of retarded people. She also helped arrange the necessary support from congressional leaders, although that task was not very difficult: Most knew that the president cared deeply about the issue. JFK even broke away from one of the emergency meetings on the Cuban missile crisis on Oct. 15, 1962, to receive the panel's report. (More than 70 percent of its 112 recommendations were eventually implemented.)