On October 11, 1961, President Kennedy officially announced the creation of the historic President’s Panel on Mental Retardation. With his blessing, my parents, Dr. Cooke, and Feldman went to work behind the scenes, making key decisions—who would be on the panel, who would lead it, how long it would have to complete its report, which legislators could be counted on for support, and more. Leonard Mayo, a longtime advocate for children and a consensus builder by character, was selected to lead the panel. The first call he received was from Feldman. “Anything that is in the power of the U.S. Government to give you, you can have.” He was joined by parent activists, medical leaders, and social scientists from across the nation. A week after the announcement, on October 17, the panel convened for its first meeting in the White House Fish Room. There was a lot of ceremony that first day. After just half a day of talks, they went out to the Rose Garden, where Leonard Mayo was asked to “summarize the morning’s work” before television and radio crews. President Kennedy then addressed the members of the panel:
This is a matter which I think should be brought out into the sunlight and given a full national commitment, and I want to express my thanks to all the members of this Panel who have been willing to serve, because I think that we can make easier the lives of many, many thousands of people and their families. It is high time that the country gives its time and attention to this.
Later, Mayo spoke briefly to the president in private, probing the source of his interest in the topic. “It’s interesting to [the members of the panel],” he recalled saying to the president, “that whereas Mr. Eisenhower became very much interested in heart and cancer and did a lot for those areas, and of course before him President Franklin Roosevelt was deeply interested in polio, you apparently are thinking that mental retardation can be your contribution to the fields of education and health and social welfare.” The president answered emphatically: “Exactly, exactly.” Perhaps he had not shown interest in the topic while in the Senate, but with the power of the presidency, John Kennedy was searching for ways to bring the story “out into the sunlight.” What was hidden was working its way to the surface.
In the weeks and months that followed, my mother was dogged. She called Mayo regularly and kept his nose “to the grindstone.” She checked in with Feldman almost daily and pressed the members of the panel to work more quickly, more comprehensively, more ambitiously. Science, as Mayo later recalled, was practiced over months and years, and the panel’s members were sometimes frustrated at being asked to pull it all together in days and weeks. The Hoover Commission had worked fast and delivered a report in twenty-four months. This President’s Panel was going to have to do the same work but in half the time. The president himself told Mayo that he wanted recommendations in time for “the Congress when it meets at the beginning of ’63.” Mayo promised a finished job within a year and immediately set out to get the best recommendations that science, policy, and social services leaders could muster.
As the work moved forward, Mayo felt strongly about bringing in groups of experts from around the country to contribute their own experiences to the committee’s efforts. He wanted everyone who’d been working tirelessly with so little support to feel that they’d been consulted and their opinions heard. He was able to convince my mother how important this was, and once she had agreed, she “went for it a hundred per cent.” One day, a group of fifty people came to Washington to make reports to the committee. “Why not invite them to go and see the president, too?” thought my mother. So she marched the group of visitors over to the White House for a tour. When they reached the Green Room, she whispered to Mayo: “I’m going up and see if I can get the president to come down, and when he does, you must be prepared to introduce these fifty people.” Off she went, and came back just a few moments later with John F. Kennedy, “bringing him literally by the arm.”
At the very same time my mother was working the halls of power, she was also inaugurating Camp Shriver back at home in Rockville, Maryland. She was determined to use the power of the presidency to shift the nation’s laws and attention, but she was also a mother, a coach, a teacher, a sportswoman. And, like every effective revolutionary, she was also an observer, an experimenter, a risk taker. In 1962, there was little consensus in the fields of science or public policy as to what, exactly, people with intellectual disabilities could do. Could they function in society outside of institutions? Could they form friendships, play sports, fall in love, hold jobs? No one knew for sure, because so few alternatives had been tested. One of Camp Shriver’s primary purposes was to serve as a testing ground, an informal scientific exploration of whether kids with intellectual disabilities could play sports and games and, if so, whether they would benefit from doing so. My father reminisced in a 1999 interview:
The marvelous thing is there never had been an effort made by anybody to bring a hundred mentally handicapped people to a country place and then experiment with them, using one person with normal intelligence to each mentally handicapped one … to see what they could do. What they could do, not what they could not do.
And so I can remember very, very easily my wife in the swimming pool, standing up at the low end with children who were, let’s say, six or eight, seeing whether they could be taught to swim … I can remember her putting them on little ponies and leading them around to see whether they could ride a pony. I can remember her helping getting the children to climb a tree, to see whether they would enjoy trying to climb a tree, and which ones would enjoy it and which ones wouldn’t enjoy it.
Like many people in my mother’s life, he, too, had been skeptical at first, but seeing these children in his backyard, meeting them, talking with them, seeing the joy the games brought them, and seeing how quickly some of them were learning to swim and race, he began to realize that a profound change in mind-set was under way. He was my mother’s greatest cheerleader—eager to help, often in awe. “That woman right there,” he would say in speeches and toasts, “is the greatest woman in the history of this country!” Never shy with superlatives, he nonetheless believed in her unconditionally. More than anything in his life, he wanted to make her happy.
The Camp Shriver revolution was, in some ways, a rediscovery. The camp revived the insights Edouard Séguin had discovered in his efforts to care for people with intellectual disabilities a century earlier. Séguin, a nineteenth-century French physician, pioneered the idea that children born with intellectual disabilities could be educated through physical movement and experiences. People could learn through exercising the body, he believed, even where analytic intelligence was limited. Séguin often clashed with the scientific establishment over these radical ideas, especially in France, but he pressed on. He knew the truth of what science now widely accepts when it comes to the effects of physical activity on the mind and the personality: the brain thrives on exercise, and physical activity supports the development of language and other mental capabilities. It’s now common sense that physical activity supports a healthy heart, improved circulation, and good digestive function. Most studies suggest that it’s also a powerful antidote to stress and anxiety. Today, these insights seem obvious, but Séguin had to learn them in the nineteenth century by observation, and he did so by caring for and observing people with disabilities. In 1962, people must have known that physical activity supported mental functioning, but the lessons were still fresh for the hundreds of counselors who arrived to help launch Camp Shriver.
When the counselors—most of them teenagers—arrived, they had no idea what to expect. Ann and Mary Hammerbacher were high school students who barely knew what intellectual disability meant. Most of the volunteers would have been raised to think that a “retarded” person might be dangerous or uncontrollable. Realistically, none would have thought that such children could amount to much. And few were prepared for how much fun they would have. One volunteer, Jim Turner, remembered, “My camper got off the bus on the first day and looked out over the huge expanse of fields and saw the c
attle in a distant pasture and ran over to me screaming, ‘The cows are gonna get me! The cows are gonna get me.’ I tried to reassure him by saying, ‘Don’t worry. You see that big fence? The cows are on the other side of the fence and can’t get to you.’ But he was too clever for me. He answered, ‘The cows jumped over the moon, they can sure jump over that fence!’”
But amid all the excitement of a summer camp, the counselors also learned, my mother wrote soon after,
that mentally retarded children can be taught. They learned that the children they had been led to believe were “hopeless,” “uneducable,” could demonstrate astonishing capabilities in certain directions. There was 7-year-old Raymond, for instance, who learned to post and canter on a horse in a week, far faster than most normal children could manage it. There was Veronica, with a 58 IQ, only a bit over half the normal IQ for her age, who could paint better than any of the counselors … They learned too, quite rapidly, what it has taken science centuries to understand—that there is a significant distinction between mental illness and mental retardation.
Over the next few years, Camp Shriver returned to our backyard each summer, shaping the attitudes and emotional lives of hundreds of young people with and without intellectual differences.
On the policy front, Mayo continued to lead the team of experts in their research and deliberations. Though not an “expert” herself, my mother, the “advisor,” was deep into the action. “As far as I was concerned, [Eunice Shriver] was the chairman of my board,” recalled Mayo. She was on the job at all times, it seemed, no matter how big or small the issue. When Mayo became concerned that the panel needed higher authorization for travel expenses to Russia and other countries he planned to visit at the president’s request, the “advisor” stepped in to keep things moving: “I had a swim with the president last night,” she told Mayo. “It’s okay [for you to travel to Russia] … go right ahead.” Her influence, Mayo recalled, made all the difference.
Years later, I asked her why she’d never wanted to be an official member, why she chose instead to remain an unofficial “consultant.” Why, I often wondered, had she exercised her zeal and determination in such forceful ways and yet been reluctant to be named the leader? “I knew that this work had to be Jack’s if it was to be successful,” she said. “He was the president and I never for a minute doubted that he made all the difference. And I always wanted this to be taken seriously by the country and never wanted people to see me and think this was just about our family.” She was looking for results, not credit, and her political judgment was as sharp as her determination. “The way to make things happen in Washington was for people to see this issue as important to Jack. It had to be an important issue, not a family issue.”
I’m sure she was right in many ways. I’m sure she was right to think that the fight for rights and dignity should not be seen as one family’s fight but rather as a nation’s fight. And I guess she was right about another message: “I never wanted people to think that what President Kennedy was doing was about Rosemary. Then they would’ve dismissed it as being a personal matter. It wasn’t. It was about the outrageous neglect. It was about the outrage. I wanted all those experts,” she scoffed, “to face the injustice of it all and not write us off.” That was surely the right decision politically, but the messaging never fooled me. Rosemary was the reason. As my grandfather had put it years earlier, Rosemary was crucial to the Kennedy family’s life’s work. And she was crucial to the fight to change the United States.
The work of the panel was not without tension. Professionals in the fields of medicine, psychiatry, and theoretical science had a history of working at cross-purposes, and now they were tasked with drawing up a unified set of recommendations. At the same time, parent activists had largely been ignored by the scientists, and their recommendations had to be harmonized with those of the “experts.” Some of the researchers wanted to focus on treatment, others on prevention. Elizabeth Boggs represented the parent community and the Arc and pressed for community-based social services. Others were more concerned with special education and the training of teachers. Some thought the cause of research would be best served by joining forces with the National Institute of Mental Health. My mother was adamant that a separate institute was necessary: disability and illness were not the same thing. The field may have been small, but its leaders were strong-willed and determined. The debates were vigorous and divisive; the panel often struggled.
Perhaps more than anything, my mother wanted to make sure that the panel’s report would be actionable—that it wouldn’t sit on a shelf but instead would lead to substantive change. At one point in the summer of 1962, Mayo’s team had completed a rough draft of a section of the report on vocational rehabilitation. My mother took the draft with her for a vacation in Hyannis Port with her family—including the president. During the weekend, Mayo’s phone rang and it was my mother. “I just read the draft of the chapter on vocational rehabilitation to the president this morning,” she informed him. Mayo was dismayed. The report wasn’t ready for the president; it hadn’t even been approved by the full panel. But what came next was worse than he could have imagined. “[The president] couldn’t understand it,” she reported.
Mayo was crushed, but responsive. “If the president can’t understand it, there must be something wrong with us,” he acknowledged. She continued with more feedback from the commander in chief: “[The president] said that on one page or a page and half, [Secretary of Defense Robert S. McNamara] would state the problem, what some key people thought about it, what he [McNamara] thought about it, his suggested solution and how much it would cost … Maybe you people can do a little better in saying what you mean in a smaller space,” my mother chided Mayo. Try to present your ideas like McNamara, she counseled, so that people can understand them and act on them. Mayo concurred and later reflected, “You know, I got a lesson in writing from the president. How high can you go?”
By September 1962, the panel was nearing its self-imposed deadline for completion, and yet big gaps remained. Mayo flew to Turkey for a medical conference. He hadn’t been there long before he was summoned to the phone in a hotel conference center in Istanbul. On the other end of the line was my mother. She reported that the panel was in an uproar. The biologists didn’t think the social scientists’ findings had enough scientific rigor to merit inclusion in the final report. The social scientists thought the biologists were out of touch with the real world and didn’t understand its urgent needs. My mother hinted that it might be a good idea if Mayo cut his trip short, though she didn’t insist. “If you can’t come now,” she cautioned, “we’ll postpone our appointment with the president to give him the report.” Mayo felt a chill. He thought for a moment about the plenary session at which he was scheduled to preside the next day. Then he had “one of those flashes of intuition” and replied: “I think I’ll come home tomorrow.” He canceled his presentation and flew back to the United States the next day. Barely stopping to sleep, he reached Washington just in time to broker an agreement.
The final days were consumed with haggling over the budget. Representatives from the Bureau of the Budget bargained and counterbargained, with Mike Feldman mediating. The “budget men” thought certain recommendations could be trimmed back. Mayo and my mother negotiated for two days straight. Finally, at 10:25 a.m. on October 16, the report was finalized. Somehow, despite all the wrangling and negotiating, the panel members were able to present a set of recommendations within less than a year. It was historic.
Just ten minutes after the panel completed its report, President Kennedy arrived to receive it. The president listened to the recommendations presented in summary form. He was engaged and curious, and asked pointed questions about where the nation should invest the strongest effort. “What have we learned from other countries? What really is the hope of prevention? Where should the greatest effort be put?” It was “a memorable morning,” Mayo recalled. “I don’t know any member of this panel who do
esn’t say that serving on that panel was the greatest experience in his life, both professionally and personally.” They would realize how memorable it was only days later, when the president announced that the nation was under the threat of nuclear war with the Soviet Union over the placement of intercontinental ballistic missiles in Cuba. They were stunned to find out that President Kennedy had first learned of the threat just hours before he had arrived, casual and thoughtful, at the panel’s presentation. “You can see what would have happened,” Mayo recalled, “if I had put my return from Turkey off for another week. We never would have made it in the world.”
The report stands even today as a landmark in public policy history. It speaks passionately of the “untold human anguish” that “blighted the future” for millions of families. It provides comprehensive recommendations covering prevention, treatment, social services, research, and education. “The Food and Drug Administration, the National Institutes of Health, and the pharmaceutical industry should develop and require the use of techniques for evaluating and assessing the effects of pharmaceuticals on the fetus, infants, and young children,” read one recommendation. Today it’s difficult to imagine a time when such a common sense precaution was not yet on anyone’s radar. The report marked the first time in the history of the United States that a president would be called upon to include children with intellectual disabilities in the nation’s schools, and to create a new system of support for adults with intellectual disabilities. And it was the first time that a president would welcome the challenge of providing support to families who, with help, could care for their children and avoid the scourge of institutionalization.
The report also lobbied for a new focus on women and pregnancy. The panel found that a skyrocketing percentage of women who gave birth in urban areas had no access to prenatal care during their pregnancies—in Baltimore, for example, 21.4 percent and rising. Their report warned:
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