Fully Alive_Discovering What Matters Most

by Timothy Shriver

  Many city hospitals now charge a daily fee and indigent women who are hospitalized during the prenatal period often sign out—against medical advice—because they cannot afford the daily rate. For these women and their babies this is a critical period; however, the management of their care is too often based on economics rather than medicine.

  In response to the panel’s recommendations, President Kennedy sent a “Special Message to the Congress on Mental Illness and Mental Retardation.” He announced a “bold new approach.” The following October, he signed the Maternal and Child Health and Mental Retardation Planning Amendments to the Social Security Act and then more legislation providing for research and community-based service centers around the country.

  Among the most important changes was the creation of a new National Institute of Child Health and Human Development. It would be separate from the National Institute of Mental Health, as my mother and Dr. Cooke had wanted. It would focus broadly on the medical problems of women and children, issues that had been almost completely overlooked to that point. Over the next fifty years, the institute would sponsor pioneering research that would transform life for millions and garner more than a dozen Nobel Prizes. That research, had it been done earlier, might have saved the life of one child born in 1963: Patrick Bouvier Kennedy. He was born to the president and the first lady in 1963, five and a half weeks premature. He died just a few days later, from neonatal respiratory distress syndrome. No one had yet discovered the treatments for that condition. There “weren’t any major problems in children.”

  It was the beginning of the end of the era of secrecy and shame. That same September, my mother decided—with the president’s support—to write an article for The Saturday Evening Post, in which she admitted that all those family pictures that had won the nation’s admiration were missing one person: Rosemary, her “mentally retarded” sister.

  [Rosemary] was a beautiful child, resembling my mother in physical appearance. But early in life Rosemary was different. She was slower to crawl, slower to walk and speak than her two bright brothers. My mother was told she would catch up later, but she never did … Like diabetes, deafness, polio or any other misfortune, mental retardation can happen in any family. It has happened in the families of the poor and the rich, of governors, senators, Nobel prizewinners, doctors, lawyers, writers, men of genius, presidents of corporations—the President of the United States.

  The family secret was broken at last. The news that the president of the United States had a sister with an intellectual disability helped discredit once and for all the myth of “bad blood” that had shamed so many American families into silence. Even the Hollywood portrayal of disability was changing. A mere half century after the chilling eugenic-infanticide film The Black Stork, movies such as A Child Is Waiting, Light in the Piazza, and the unforgettable exposé Christmas in Purgatory offered very different perspectives on intellectual disability.

  In 1962, my mother sent the president a copy of a Kennedy Foundation brochure advertising new grant opportunities that pictured a new medal to be given by the foundation to leaders in the field. Her attention was not, however, drawn to the new grant monies. Her cover note read as follows:

  Dear Jack,

  I thought you would be interested in seeing this. Everyone thinks the medallion looks like you at the age of six.

  Bunny hugs,

  Eunice

  In the end, the changes for people with intellectual disabilities and their families launched by President Kennedy were among the most powerful and lasting legacies of his brief presidency. Their effect was not immediate, but the tipping point of change had been reached. Just three years later, in 1965, my uncle Robert, then a senator from New York, would make a historic visit to the Willowbrook State School in New York, where more than six thousand children with intellectual disabilities were housed in a facility built for four thousand. When he emerged from the prison-like grounds, he was visibly shaken and called it a “snake pit” that had to be shut down. That visit became a lasting testimony to the horrors of institutionalization in the United States. “Snake pit” could have referred to any number of institutions around the country, which even into the 1960s were sites for medical experimentation and animal-like filth and human degradation. The population of these institutions peaked in 1967, perhaps the clearest evidence that despite these first changes in public policy, the culture of the United States remained locked in the paradigm of denial and rejection through the decade.

  But these first steps were nonetheless the necessary beginning and perhaps the most difficult steps of all. Where there are secrets, there is shame, and where there is shame, there is fear. For most, it is better to keep the secret than to risk the ridicule of exposure. The first step can seem too dangerous.

  But in the life of a nation and in the life of a family, breaking the secret is the necessary first step to healing the shame. When the secret is broken, its power to create suffering is broken, too. Once Rosemary’s identity was revealed, the healing could begin. And as it turned out, Rosemary hadn’t been the problem at all. The problem had been the fear that her differences were too embarrassing to admit. It was made worse by the culture of fear and the attitudes of rejection that had grown so terrifying that whole nations had embraced them. But my grandmother’s heartbreak came from fear, and it was only by ending the secret that the suffering could be ended, too.

  Somehow, Rosemary broke through and surfaced in the 1960s. There, she finally became seen in her family and seen in her country as well. Once she was seen, the chance to heal both her family and her country was possible. It was a family that would need healing again and again. In the years that followed the Saturday Evening Post article, both Jack and Bobby died in flashes of terrifying violence. But the siblings who were left behind nonetheless persevered in inviting people all over the world to ease the age-old fear of vulnerability and discover in the simple gifts of play and sports a new vision of how to create belonging centered on the triumph of courage and the power of love.

  SIX

  Daybreak

  We awaken on a low plane, on a plane of defeat—beneath the level of possibility. Overpowered sometimes by a general climate of hopelessness. Promise even can be viewed as unattainable and into this morass of misery a light shines—a light enters … Into the atmosphere of gloom and despair, day breaks, light emerges, flooding the grim meadow of misery with hope and promise. Light …

  —Maya Angelou

  Light is always breaking through from within us and all around us, too. Once in a while, we have the mind and heart to welcome it. And sometimes, more rarely, we experience the joy of welcoming it together with others. That’s what happened on the morning of July 20, 1968. A whole new way of welcoming light was about to emerge. A whole new way of learning how to win was about to emerge, too. It could hardly have been expected.

  On that summer morning in Chicago, a sports event was scheduled for Soldier Field, but there were lots of reasons to assume the show would be more carnival than competition. The sun cast its early-morning shadows across empty Soldier Field as it did on any other summer’s day. The weather was fine—hot, clear, and low in humidity. The hot dog and cold beer concessions were not slated to open. No vendors would hawk Chicago Bears pennants or tees. The mayor had ordered that an aboveground swimming pool be installed in the center of the stadium, which was a cumbersome job, but otherwise, it was almost a day off for the Soldier Field crew. Games were scheduled, but spectators were not. Athletes arrived from throughout the country, but their names were unknown to the public. Kevin O’Brien, Alice Katsoukis, and Michael Cusack, whose dad was a police officer, had all come from around Chicago to compete in the games. Others, like Marty Sheets from North Carolina, had traveled much longer distances. But would anyone cheer when they ran? Would anyone watch when they jumped?

  Only a thousand people were expected to watch a few track and field competitions and some swim races in the makeshift pool. A municipal pa
rk might have seemed a more suitable venue than this massive hundred-thousand-seat stadium. Anne Burke, however, thought otherwise. Though only twenty-four years old, she had been given the job of heading what was being called the Chicago Special Olympics. She’d started work for the Chicago Park District three years earlier as the city’s first-ever “special recreation” coordinator, charged with introducing sports and recreation to “retarded” children in Chicago. The Park District had never before been able to fund programming for children or adults with special needs; Burke’s position was made possible by new grant money. William McFetridge, president of the Building Service Employees International Union and also of the Chicago Park District, had won the grant and sought out applicants. When Burke applied, she was a gym teacher. “There was no sport I didn’t try—you name it—swimming, volleyball, baton twirling, tap dance. I loved them all.” She’d had no experience with students who had disabilities—none. But she saw the new position and decided to take it on.

  The source of the funding that created Burke’s position? A $10,500 grant from the Kennedy Foundation. But in 1965, there was no road map for how to do what she’d been hired to do. How was she to identify participants, sign them up, train them, transport them? “No one told me what to do,” recalled Burke. “I had never even seen a kid with intellectual disabilities before I got the job, so I just did what I already knew how to do, which was to find kids and try to teach them sports.” She was too young to know that she was a pioneer and too naïve to know that she was likely to fail. She found out quickly, though, that it wasn’t going to be easy. “I met all these parents who were afraid for me to take their kids to the park. It was so surprising and frustrating, but the frustration just emboldened me.” She went door to door—literally—introducing herself to parents whom she’d discovered through word of mouth. She tried to convince them of the simplicity of her offer to teach their kids to play sports and have fun. She told them of her background as a teacher. She showed them the games she was going to play. And then she discovered the source of most of the resistance: “My kid will be made fun of if you take him out to the park,” one parent told her pointedly. “I don’t want to take that chance.”

  “Really,” Burke reflected, “most of the parents were embarrassed. They had these kids and no one knew about them. They didn’t want their neighbors to see and talk. It was terrible.”

  And it wasn’t just the parents. “There were barriers everywhere,” Burke recalled, especially barriers created by those who should have known better. The head of one of Chicago’s most respected philanthropies, Tribune Charities, derided Burke’s effort to get “retarded” kids out into the open. “Who do you think you are,” he scoffed at Burke, “putting these kids on display like that!” Even her colleagues within the parks department dismissed her work as futile—an impression underscored by the fact that Burke’s own department didn’t even pay her; her position had to be funded by an outside source. “So many people thought what I was doing was fruitless work and, even worse, mistaken. ‘How could you subject those kids to being ridiculed? How could you mislead them into thinking they can do these things when clearly they can’t?’” But Burke persisted, and the program she was running began to grow, little by little. And she had the support of her boss, William McFetridge, and he in turn had the support of Chicago’s all-powerful mayor, Richard J. Daley. Burke plowed on.

  In 1967, she got her first real break. “I decided to put on a show, but I didn’t really think anyone would come to see sports, so I put on a version of Mary Poppins!” She assembled almost a hundred people with special needs and somehow coached them into roles in the musical. She had kids as young as five and adults as old as forty. They prepared for months, and when they were finally ready, Burke invited McFetridge and other city leaders, including Dan Shannon, an accountant and former All-American football standout at Notre Dame who was vice president of the Park District and a major power broker in Chicago. Burke was somehow unafraid of the potential disaster that a show starring almost a hundred children and adults with special needs might become. Some of the “performers” had never been to school and had no idea of how to behave in a group. None had ever acted in a play. Several had disabilities that limited speech. Memorization was out of the question for most. Funding for costumes and transportation and staging was zip. The chance of a successful performance wasn’t much better.

  Despite all that, Burke persevered and the Chicago Park District presented an unusual and unprecedented production of Mary Poppins. The actors acted. The singers sang. The plot unfolded with children and magic and imaginary worlds brought to life. One can almost picture it even now—the young children in need of a nanny, the wind-borne Mary arriving with her bag of potions and dreams, the carousel horses coming to life, the happy uncle floating in the air, held aloft by his laughter, a world of possibility and happiness conjured up by Burke’s hundred outcasts. McFetridge watched and “could not control himself,” Burke recalled. Shannon, the hardened union leader, watched, too. “Shannon ran everything in Chicago, and he was so moved. He barely said anything.”

  “How many people are like this in Chicago?” McFetridge asked.

  “I don’t know,” Burke responded.

  Shannon made a simple offer: “I’ll do anything you ever want. Anything for these people. Just ask me.”

  Burke couldn’t believe it. “Here was this big, strong, gruff, and powerful man, and he was practically in tears when he watched the show. I just thought to myself, ‘Wow. We should do more of this!’”

  It was a breaking through—for the performers, for Burke, and for McFetridge and Shannon, too. And it was just a glimpse of what was to follow.

  When Burke tried to figure out what to do to follow up the success of Mary Poppins, she had no knowledge of the efforts taking place in Washington. As early as 1962, my mother had been working with Dr. William H. Freeberg, a professor at Southern Illinois University who’d been running the Little Grassy Lake residential home and day camp. Freeberg was a pioneer in the area of physical activity and recreation for people with intellectual disabilities, and together, the two of them had convened meetings of recreation directors to explore what might be effective for children with these disabilities. They’d also convinced the United States Jaycees to develop day camps and exercise programs, and the Kennedy Foundation had funded more than a dozen camps around the country. My mother had pushed research, too, providing funding for Dr. G. Lawrence Rarick, a professor at the University of Wisconsin and coauthor of the 1960 monograph Motor Characteristics of the Mentally Retarded, to create physical fitness tests for children with intellectual disabilities. And she’d hired a new advisor to the foundation, a Canadian researcher of physical fitness for children with intellectual disabilities, Frank Hayden, whose work had confirmed that physical activity would help children develop not only physical skills but also emotional, social, and even intellectual skills.

  When Burke was casting about for her next project, I’m sure my parents were emboldened by people such as Hayden and Freeburg and Rarick to think that something more than just another camp or another research project might be possible. It was 1967. The political and cultural climate was fertile for change.

  By then, my father had taken over the leadership of President Johnson’s historic War on Poverty. Between 1965 and 1968, my father and his team launched an array of initiatives that is almost impossible to believe today. Their work included the creation of Legal Services, the first-ever federally funded legal program giving poor Americans access to lawyers for civil cases; Community Action, the first-ever federally supported effort to empower communities with large concentrations of low-income people to organize themselves; and Job Corps, the first-ever federally funded jobs training program to equip low-income Americans to become job ready.

  Though my father was the face of these federal programs, perhaps his most lasting effort was the unlikely result of a collaboration with my mother: Head Start, the nation’s first
preschool program for low-income children, launched in the summer of 1965 with more than five hundred thousand children entering centers nationwide. It was, by any estimation, among the most ambitious and popular of President Johnson’s domestic programs, but few people knew at the time what had led to its creation.

  My mother had been in the midst of her search for scholars and practitioners interested in recreation for children with intellectual disabilities. In the course of that search, she discovered Dr. Susan Gray at Vanderbilt University’s Peabody College. Dr. Gray was doing research on the developmental growth of young children with intellectual disabilities who came from economically and socially marginalized communities. She was taking what was a revolutionary approach at the time—focusing on the learning of children as young as three years old, and even visiting their parents at home, encouraging the parents to learn as well. What Gray found surprised her: with play and nurturing stimulation, very young children with intellectual disabilities could make dramatic progress in their use of language and in their cognitive skills. In 1964, my mother announced: “Sarge, I’m going to Nashville to meet Dr. Gray. What she’s discovering with children who have disabilities might make a difference for all children. She’s terrific and you should come with me to meet her.” Reluctantly, my father agreed to fly to Nashville with my mother, and they visited Dr. Gray’s office at Vanderbilt together.

  “Sarge and I went to visit Susan Gray,” my mother wrote years later. “We watched her with deprived youngsters and their families raising their intelligence and motivation. Sarge said (I can remember it like it was yesterday), ‘If Susan Gray can do this in Nashville, this should be done throughout the country’ and that was the germ, the initiation of Head Start.” Within months of the visit, Head Start was born: a national commitment to marshal the power of early childhood education and family support to improve the chances of the nation’s most vulnerable children to escape poverty.