Fully Alive_Discovering What Matters Most

by Timothy Shriver

  “Can you imagine?” President Kennedy asked. He could imagine a nation that denied rights and privileges to those at the margins, because he’d grown up in that very nation. He knew the wages of neglect. He knew that there was no justification.

  But he could also imagine a nation that asked citizens to give themselves to the country so the country could give them back their best selves. He was a politician “tempered,” as he said in his inaugural address, “by war,” but shaped not just by a fragile global peace but also by the joy of loving a fragile sister. In Cleveland, he echoed, albeit indirectly, the theme of his inaugural: that freedom depends on the power of imagination unleashed to believe in a more just future, on an unvarnished confrontation with the horrors of injustice and the pain and tenderness they elicit, on the self-gift of citizens willing to become agents of healing that injustice with strength and love, on the sure conviction that in giving one’s self to another, one receives one’s truest and happiest self in return. Freedom for everyone depends on no one’s being relegated to the shadows. He could imagine.

  Rosemary’s story remains an enigma. She was a symbol of the shadow side of life, but she also unlocked the compassion necessary to change it. She was born in an era when people like her were sent to the shadows by the millions. But she was also a part of a family whose bonds were like steel and whose faith was relentless. Just by being herself—fragile and vulnerable—she taught service, empathy, and tenderness. Her parents and her brothers and sisters tried to include her, heal her, fix her, protect her. As strong as they yearned to win in politics and in sports and in life, they knew she was not that kind of winner. They were afraid of Rosemary and afraid for her, too. What is understandable about the era in which she lived does little to lessen the sadness of what happened to her.

  But the bonds within Rosemary’s family and the faith its members practiced were ultimately stronger than the fear. Her loss to the operation was devastating, but unlike her three brothers and one sister who were also lost in tragedy, Rosemary didn’t die. For more than sixty years, my mother brought her back to life—first by revealing her existence and then by challenging others to bring light to the shadows and the dark places to which Rosemary and others like her were relegated. If there is one lesson I’ve learned from our family’s experience and from praying my way to try to make sense of it, it’s that the shadow is us. What we hide hides us. What we fear creates fear. What we fail to love in ourselves makes it impossible to love in others. Happiness can come only when the shadow is revealed, welcomed, accepted. There is no other route. Shining a light on the shadows is the only way.

  By revealing Rosemary to us, my mother taught us children that by force of will, we should see Rosemary as a winner. But sadly, I don’t think that my mother felt that she herself had been successful. What she wanted for people with intellectual disabilities, she never gave herself. The work of shining a light on Rosemary and on millions of people with intellectual disabilities never produced the wattage she wanted. Her life’s work brought attention to people who deserved it, and she did it with a relentless focus on proving the world wrong. She was able to follow her faith to the end and she never gave an inch. But in her eyes, the work—the welcome, the healing, the understanding—had barely begun. In her later years, she focused on ensuring that others would follow.

  And millions have. The games she created and left behind continue to invite new generations to ever new journeys of discovery. All over the world today, volunteers come to the games to be reminded that fear cannot withstand a direct gaze. Over and over again, they find themselves believing anew in the power of their own imaginations to conjure distinctive visions of what is possible and to see that possibility as theirs to bring to life. In laughter and smiles and tears, the athletes remind us to realize that ideals like “heaven” are not places we go but rather the place where we belong already. They invite us to unlock the greatest source of energy and power known to humankind: the recognition that each person is already everything that he or she desires to be and, in that recognition, to know that we each deserve to live that truth with affirmation and delight.

  The athletes of Special Olympics are the unlikely teachers of these secrets. The recurring question that most of us face in our encounters with them is this: Is it possible that those on the edge—those people we consider “different” and those parts of ourselves that we hide—are a pathway to strength and unity? What I’ve found is a simple answer: there is no other pathway. To live fully alive is to do what so many of these athletes have done: face the fear—whatever fear lies within each of us and within our countries—and in facing it, break its hold and defeat it. And when the fear is defeated, we are free to be ourselves, to pursue our unique gifts and dreams, to find the places and people to whom we belong and with whom we are affirmed, and together with them, to give ourselves unselfishly to life.

  I think belief is at the heart of why the Special Olympics adventure still attracts millions of devoted advocates and volunteers and friends every day around the world, and why it inspires them not just to work for a more inclusive future but also to be more fearless in pursuing their own dreams. At some level, playing together awakens us all to the possibility of believing in one another and not being afraid. I think that’s why more than ten thousand medical professionals have joined the Special Olympics movement and, under the leadership of pioneers Dr. Steve Perlman and Dr. Paul Berman, created a program all their own, “Healthy Athletes.” Together, they work to provide free health care at Special Olympics games all over the world for hundreds of thousands of people who otherwise might never have it. They came to help and found a way to believe.

  I think that’s why hundreds of thousands of non-disabled school-age young people around the world are participating in Special Olympics Unified Sports, in their schools and neighborhoods. I think that’s why a whole team of them, led by my son Tim and his friend Soeren Palumbo and Loretta Claiborne and the actor Eddie Barbanell, found the energy to change hearts all over the world with their appeal to “Spread the Word to End the Word” and end the humiliating use of the word “retard.” They work to change attitudes, but what they really do is create believers.

  I think that’s why there are more than a million athletes in both China and India who participate every year in thousands of volunteer-driven Special Olympics games. I think that’s why tens of thousands of law enforcement officers around the world carry the Special Olympics torch to raise money and dignity. I think that’s why volunteers continue to join in countries such as Lebanon and Morocco and Rwanda and Malawi and Afghanistan and Myanmar. In the poorest villages of those countries, volunteers are assembling today, preparing fields for games, inviting families to join support networks, following the leadership of people with intellectual disabilities, and promoting the gifts of those same people—thus, the gifts of all of us—to anyone who will listen. Pick a day and offer to volunteer and chances are, the opportunity will be yours. You may come to give your time, but you are likely to leave believing in something that transcends time.

  I think what these volunteers have in common is that they have all been cracked open just enough to know that a world of believing is a world in which they want to live. In a moment, in the blink of an eye, in a smile or a cheer or a goal scored in the most pure and beautiful of ways, they are given back their imaginations, not the ones they first used as children but their fully adult imaginations, free to believe, free to be in love, free to follow believing wherever it leads. It is no small irony that many of us stumble into this encounter with believing through the athletes who seem to represent our darkest doubts and fears. It is absolutely miraculous that through them we become suddenly less afraid and suddenly more confident in the unimaginable beauty of life.

  Albert Einstein wrote that the mysterious was at the root of all true art and science. Einstein had it right, I think, when he pushed the importance of dwelling in mystery to its extreme: “He who knows it [the mysterious] not an
d can no longer wonder, no longer feel amazement, is as good as dead, a snuffed-out candle.” Even for the great scientist Einstein, “wonder” and “amazement” are not just the provenance of the physical universe but also the delightful reward of the inward journey to being fully alive. Mystery isn’t something confusing or imprecise but rather more full of clarity than we can fully grasp. “A knowledge of the existence of something we cannot penetrate,” Einstein realized, “of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms—it is knowledge and this emotion [the mysterious] that constitute the truly religious attitude.” It also constitutes the center of the true meaning of Special Olympics.

  Needless to say, defeating one’s fears and coming to believe and finding “awe” and “wonder” at the center of the universe cannot be learned or experienced by reading a book. It’s impossible to convince someone else to believe by telling them to do so. I could write a whole additional book with the hope of being more convincing, and I assure you that there are many more heroes and sheroes who have crossed my path who are more than deserving of books themselves. I could write about Mostafa Galal, the Egyptian Special Olympics athlete who greeted me on my first visit to Beirut for the Middle East North Africa regional games, when I was skittish about entering a city known for war. I arrived at the hotel in the middle of town and Mostafa charged up to me and gave me a huge bear hug and a kiss on both cheeks. He somehow knew the kiss would make me squirm just enough to ease out of the tension I was carrying. I could write about Chrissy Rivera, whose three-year-old daughter Amelia was rejected for a transplant in 2011 because she was “mentally retarded.” Chrissy fought back and won her the lifesaving treatment. I could write about Sari Altino in the Philippines, who was given a pair of glasses at a Special Olympics Healthy Athletes clinic and for the first time, at the age of twenty-two, could see. She chose her first words upon seeing as wisely as any great poet might have: “Mom!” she shouted. “I see you! Mom! You’re beautiful.”

  Would their stories resonate? I have no doubt. Would these gifted human beings be welcomed as leaders and teachers? I doubt it. Today, estimates suggest that more than 90 percent of children diagnosed prenatally with Down syndrome are aborted, more than 95 percent of children in the developing world with intellectual disabilities don’t go to school at all, routine medical care is still denied even in the wealthiest of nations, and loneliness is still the most common fate for these human beings and their families. We have not yet recognized the severity of the discrimination that persists, nor have we mounted the kind of civil rights movement that these citizens and their families deserve. Fear has not lost its power to create suffering. Our work is far from done.

  As in ancient times, prophets are most often ignored, not because their words aren’t beautiful but because the listeners have never felt the beauty for themselves. Little Amelia Rivera and her amazing mother, who donated her own kidney so that her daughter could live, are not, in our culture, such aspirational figures as television stars or the superstars of big-time sports. They don’t go in for hair and makeup before the cameras roll, and they don’t look to polling data to know what they believe. They offer a much more fulfilling life, but the cost, as T. S. Eliot wrote in “The Four Quartets,” is “not less than everything.”

  We’re all looking for our own “everything,” our own “something bigger,” and we’re as hungry as ever for role models of how to achieve it. It may be scary to take a chance on trusting one another and believing in our dreams, but it’s much more scary to live afraid and hopeless. So why not follow those who are living fully alive and try? Some of us long to act on the big stage of political and social change; others want to make a difference in our schools and communities; and still others want to look inward to heal and belong. All around us, there are role models who continue to inspire us if only we have the eyes to see them and the guts to believe in ourselves enough to try to emulate them in our own way.

  The secret is believing. Of course, believing isn’t easy, but thankfully we have role models such as Han Rongfeng, a mother in China who gave birth more than twenty years ago to a son who, she was told, was “stupid and useless.” She cried for days.

  “I was so alone as he grew up,” she recalls. Other parents directed their children not to play with her son; friends abandoned her. There was “an enduring bitterness” that came from the looks and glares. “If you have a child with a disability in my province, you have done something wrong in your past life.” But the stares and rejections didn’t change one thing: “Deep in me,” Rongfeng said, “I wasn’t sure I could go on, but somehow I knew I must try … I am a fighter. My son is a life, and he’s a person, too. I refused to waste him.”

  And so she faced the fears and they lost their power to defeat her. And she became like the character in the Maya Angelou poem, chanting, “I rise, still I rise.” She visited other mothers of children with intellectual disabilities, asked them to share their ideas, and organized a small group to ask local officials for help. She made no progress. In the course of her organizing, she attended a Special Olympics event. “It was deep and memorable,” she said, “to see all these people helping and cheering and happy.” The event showed her what was possible for her son, but every day was a reminder of all the things he didn’t have. He didn’t have friends, he didn’t have a school, and he didn’t have a chance.

  A few months later, she decided to escalate her efforts and confront the government directly. Friends counseled her against provocation, citing the risks. But she had nothing to lose. “I have a special child,” she said matter-of-factly; “I wanted to help him. I wanted others to understand him. This was my only purpose in life.”

  Rongfeng is a full course in living fully alive. “Life is hard, so hard. My mission is nothing big,” she said, betraying the strength of her conviction. Her mission wasn’t big; it was enormous. Her mission was not only to love her son at all costs but also to change the course of her nation. She had been given the gift of a child—about that she had no choice. But she had chosen to accept the gift of making the world a place worthy of her child, and so off she went. “I just marched right into the government office and had no appointment or anything. I walked up to the first person I met and I told them, ‘I want the government to support our children. I want a school and a field and a place to meet and offices.’ The woman looked at me and went to get another person.”

  As she recounted the confrontation, she giggled, then grimaced. “I said it again. Then another person came and I said it again. I didn’t know if they were going to take me away forever, but I just kept saying it. I kept saying I have the names of all the parents and we want programs for our children.” She felt like there was a force within her that was unleashed and she could do nothing other than let it out. The last official that came into the room and heard her story turned to his subordinates and then looked back at her: “He told me, ‘You are a shining light.’ I almost cried but I tried so hard not to. He promised to work with me and he did. It made me so happy and proud. My son does matter.” Months later, Rongfeng got the approval for a new school for her son and for other children with intellectual disabilities. Official policy began to change because she believed enough to risk herself to make it happen.

  She believed and, by believing, changed the arc of history in her nation. China, like every country, has a long way to go to be a place of welcome for people with intellectual differences, but I think they’re moving in the right direction thanks largely to the efforts of women such as Rongfeng.

  Most of us don’t aspire to change nations, like Rongfeng. For most of us, making a difference in our local schools and businesses and communities is more than challenging enough. Take just one example. At Kellis High School in Phoenix, Arizona, a small group of youth leaders, together with their unstoppable special education teacher, Michael Wakeford, launched a Special Olympics Unified Sports program just th
ree years ago. Hoping to attract twenty-five or so students with intellectual differences and the same number of non-disabled peers, they started with practices and training sessions after school. The kids who joined played and bonded and discovered one another in ways they had never understood before. “I just went to the program because Coach Wake told me to try it,” Colin Davis said, “but I really didn’t understand anything before I went. Then all of a sudden, I meet these kids and I had walked past them in the halls my whole life and they turn out to be the best people I’ve ever known. I mean Treveon Wimberly is now my friend, not my special needs friend. He’s my friend, and to be honest, he’s the best friend I’ve ever had in my whole life. So what if he can’t speak? I couldn’t care less.”

  Because these young people knew how much fear and bullying existed in their own school, they decided to take the lessons they were learning and try to teach them to others. But how to get the message out to 1,800 kids? How about a dance? The kids in the Unified program developed a six-step dance and named it for the school mascot, the Cougar. They coined their dance “the Cougarlude” because they wanted to perform it at every game or show at the school instead of an “interlude.” Well, pretty soon the Cougarlude went viral and the biggest school events—varsity basketball games, dances, assemblies—were all interrupted by a thousand kids joining the Unified Team in the Cougarlude. It became the symbol of Kellis: everyone dances together.

  The kids didn’t stop there. The following year, Coach Wake created a credit class, “Unified Sports,” with a curriculum of physical activity and study of the social and cultural dimensions of disability and inclusion. The class is an elective that requires a seven-page application and yet, each semester, almost fifty non-disabled students apply. The students created a motto for themselves, “We Are Able,” and designed T-shirts for their team with the words blazoned across the chest. What they didn’t expect was that the T-shirts associated with the “special ed” kids would become the hottest article of clothing in the school. The first year, they sold almost four hundred to students, and that number is rising every year. To be a Kellis student is to believe in “We Are Able.” Kids with Down syndrome hang out with varsity athletes. Kids with autism sit at lunch tables with kids headed to elite colleges. Kids in wheelchairs move through the halls with student council members and yearbook editors.