Fully Alive_Discovering What Matters Most

by Timothy Shriver

  “Nice to meet you Mr. Shriiiva,” she answered in a beautiful South African lilt.

  “Please call me Tim. And this is your son?”

  “Yes. This is Daniel.”

  “Nice to meet you, Daniel.” I gestured toward him. I reached out and touched his motionless hand. “Thanks for inviting us all to come here to the sanctuary.”

  Daniel of course did not respond. Neither did his mother. I turned to her to strike up a conversation.

  “I was wondering how things are going for you here in South Africa. We in Special Olympics want to be helpful in promoting sport and even more, in promoting change in the country. How are things for you and Daniel today?”

  “Things are fine, thanks,” she answered simply and without the slightest attention to my question.

  “That’s wonderful,” I replied. But I had another agenda. I wanted to learn about the problems in South Africa so I could formulate plans for advocacy and change. “But I think we have an opportunity to challenge the leaders here to do more for people with disabilities. What could be done differently, in your opinion?”

  The games in front of us continued, as did her massage of Daniel’s head and neck and shoulders. “Things are fine, thanks, Mr. Shriiiva,” she said again.

  “Well, I’ve studied the situation here and I know the schools don’t have adequate resources for children with special needs. Even this sanctuary could use some better facilities. I know you must have endured a lot of challenges trying to raise Daniel. Could you share some of your experiences with me?” I wanted to know what was wrong and in need of changing. I was in my own world, thinking politically, seeing only the lack of financial resources, the corrosive neglect of political leaders, the insidious effect of stigmatizing public attitudes. She was in another world.

  “Thank you, Mr. Shriiiva. But Daniel and I are fine.”

  “Fine? Isn’t there something better that could be done?”

  She finally turned to face me. “You know, Mr. Shriiiva, I will say it again. Daniel and I are fine. Perhaps you don’t understand so let me tell you. Daniel has taught me something that most parents never learn. Daniel taught me unconditional love. Every day, I am grateful to him. I’m sure there are many things to change, but as for Daniel and me, we are fine.”

  I had heard words such as “unconditional love” many times in my life. I had fallen in love with Linda and had never felt anything like the excitement of her and me together. I had read Lonergan’s writing about God’s love as a love that has no conditions for its fulfillment. I had felt the grief of lives lost and knew grief had its source in love. I had seen five children born and growing, tiny ears emerging miraculously, fingers stretching to grasp my hand, a bicycle ridden for the first time with peals of exuberance.

  But somehow, I had never quite heard before what she said to me that day: that most parents never learn unconditional love. I wondered whether that was true, and more troublingly, whether it was true of me. Had I loved my children with conditions? Had I calibrated my love for them, even unconsciously, in a way that was based on how well they lived up to my expectations? I had never seen a moment quite like the one next to me that day. It was just those gentle maternal hands on that broken but beautiful body, the two of them so completely together, no games being played, no discussion being undertaken, no task being completed. I couldn’t look at the two of them for long—I had to look away. They were so intimate, so united, so peaceful together. I felt I was intruding with my abrasive questions and my arrogant ambitions. Love is unconditional, I realized, otherwise it isn’t love.

  I asked myself again: Was I capable of unconditional love? As much as I wanted to answer with a full-hearted “yes,” I knew that I couldn’t, but I wanted to figure out how. Now at least I had my role models—Daniel and his mother. Unconditional love isn’t a thing you can figure out. It’s a gift given and received in equal measure.

  * * *

  Every now and then, Zheng sent me pictures of little Pearl and I shared them over and over again with everyone in my office. Pearl became a living symbol of all that we wanted to create in China and around the world: she was hope from the experience of despair; happiness despite challenges of body and mind, unconditional love. When Pearl was almost two years old, I arranged to meet her and her parents at one of our Special Olympics games near Shanghai. The three of them came to a community center together and we took pictures. Pearl was strong enough to stand while holding the side of a table. We cheered as she looked up at her mother with an astonished expression. She was adorable.

  Those two years had not been easy for Pearl or her parents. Like a high percentage of children with Down syndrome, Pearl had been born with serious heart defects—no left pulmonary artery, a hole in her heart, and several other dangerous congenital abnormalities. Pearl was often hospitalized and even at home she was often sick. Caring for her was a struggle, and her little life always seemed in jeopardy.

  “Frankly, I often feel exhausting of caring Pearl…” Zheng wrote me when Pearl was almost three. “We can’t sleep well, Pearl always cry at midnight and we have to leave work to take care of her as she is so bad physical. So high medicine fee …

  “So many times give up is come out in my deep mind, we are really tired. However, when she smile at me, all bad thing just disappear. As my poor English, I don’t know how to descript this feeling, I just know, that’s call love, and I think that may be the true core of Special Olympics.”

  In 2005, little Pearl died after a failed heart operation. She was only three years old, but her death sent waves of grief throughout the Special Olympics movement. Thousands of us had followed her life, her first hours, her “sile so pure,” the inspiration she gave her father to believe that nothing could stop him, her ability to make “all bad thing just disappear.” I wandered through the halls of our Washington, DC, office building. In office after office, people were weeping over the loss of a child they hadn’t even met. We posted Pearl’s picture on our international website.

  “God bless you and your families and litter Pearl,” Zheng finished his last e-mail to me. As I wept with my colleagues that day, I took a picture of “litter Pearl” and put it in a silver frame in my office. What was it, I wondered, that drew us so close to her life? The picture was black-and-white and a little fuzzy. It showed Pearl wrapped tightly in warm clothes and a hat, only the small features of her face visible. But her eyes held on, as if telling me to stop running and stay with her, to stop racing away to bigger ideas and grander tasks. Pearl was a teacher of how to love from within. We met only once. I never heard her speak a word. But her presence had made me a better father and a better man.

  TWELVE

  The Fun That Lasts

  More often than not, parents and friends of people with intellectual disabilities say that they have more fun and happiness around those people than around others. The more time I spent with them, the more I, too, discovered that they had a lot to teach me about how to have fun. But to get the full message, I had to leave the sidelines of volunteering and advocating to play Special Olympics Unified Sports. And I’m proud to say, the first time I played on a Special Olympics Unified Sports team, I won a gold medal!

  “Unified,” as it’s called, is a chance to get off the sidelines of Special Olympics and onto the field. The founder of Unified is an affable and passionate Special Olympics leader named Beau Doherty who had started his career working in institutions as a recreation coordinator. “It was pretty grim. I remember more than a few times when I had large groups of residents and was told to clean them up by hosing them down. I can’t say I’m proud of that work but it did teach me one lesson: I had to get those folks out of those institutions and into the community. Anything was better than life in those institutions.”

  Beau started working for Special Olympics Massachusetts when he was twenty-five years old. Seared with the memories of what life was like for people with intellectual differences when they were isolated, he became obsess
ed with doing whatever he could to promote their integration. At Special Olympics Massachusetts, he pioneered the idea of creating teams where half the competitors would be people with intellectual disabilities and the other half would be nondisabled “partners.” In 1992, Beau became the executive director of Special Olympics Connecticut, and he put his ideas to work by coaching a newly formed softball team that included me.

  At the end of our first season, on a sunny day in New London in early August, our team cruised to an easy victory in the Special Olympics Unified Sports State Softball Championships over the incumbent champions, Waterbury. I played an errorless second base in the final game and was high-fiving my teammates for hours after we were awarded our first gold medals. Our rivals were none too happy about being dethroned. Everyone thinks that Special Olympics athletes are sweet and kind and don’t really care about winning. Wrong! Whenever we ask athletes what they like most about being a part of the Special Olympics world, medals almost always rank at or near the top.

  The following season, our New Haven team again looked like the favorites. We had a diverse range of talent: power hitters who were cops by day, gritty outfielders who had competed in Special Olympics their whole lives and ran down almost anything, and a steady battery of pitchers and catchers who kept the ball around the plate. When Waterbury came down to New Haven for our first regular-season game of the spring, we knew they were going to play us hard, but we felt unbeatable.

  One of Waterbury’s power hitters was King Davis. He’d competed for several years and was a real trash talker. When Waterbury was at the plate, you could hear his constant chatter calling for hits and runs. When we were at the plate, he’d snarl the old playground taunts: “No hitter, no hitter, no hitter.” He was both tough and funny, and our team answered him in kind.

  When he came up to bat the night of our first regular-season game, I was ready at second. Or at least I thought I was. A few pitches went by for balls and strikes, and I think I must’ve fallen victim to a position player’s worst mistake, which is to let your mind wander. In any event, on the next swing of the bat, King crushed a smoking hard low line drive directly toward me. But unlike any line drive I’d ever fielded before, this one had sharp backspin on it, and as I crouched down to catch it, it rose up like an inverted curve ball. Before I could get my glove up, it smashed into my mouth at full speed. In an instant, I was on my back, dizzy and afraid to touch my mouth for fear that my teeth were all gone. The ball had hit me hard, and blood was all over my face. I was conscious but dazed and embarrassed. By the time the umpire called time out, my teammates were hovering over me with ominous looks in their eyes.

  Tentatively, I reached toward my face and to my surprise, all my teeth were there and none of them seemed to be pointed in the wrong direction. The blood appeared to be coming from my lip, which was bountifully swollen but still in roughly the right place. My nose was in one piece despite a few grinding noises when I tried to move it from side to side. All in all, I began to come to my senses with the relieved conclusion that my face was more or less intact. I stood up, wiped the blood onto my sleeve and regained my position at second base, telling everyone that I would be fine. And standing there on second was King Davis, looking at me quizzically, and perched in position to run to third.

  I wasn’t sure how he’d ended up on second or where the ball had gone after it careened off my face, but with everyone slowly returning to their positions, he and I were standing in the middle of the field in our own space. “Nice hit,” I said to him, conceding the obvious.

  “We’re going to kick your ass in States this year, buddy.”

  I looked at him cockeyed, not sure if my ears were working. Had he somehow missed the sight of me flattened on the infield, bloodied by his blast? He was a Special Olympics athlete, and I just knew that he’d meant to say something charitable. I kept looking at him, waiting for the expected kindness that transcends competition.

  “You heard me. We’re gonna win States this year and you ain’t got no chance!”

  Finally, I smiled, not at him, but at myself. He wasn’t a “Special Olympics athlete” or a “person with intellectual disability” or a “sweet kid with a lot of heart.” He was a softball player, nothing more and nothing less. When the game was over, there would be time for lessons and friendships, but while the game was on, we were competitors. And the only thing on his mind was winning.

  I snapped back to the game. Focus, focus, focus. There was a runner on second with nobody out. Batter up. A ground ball hit to me was a play to first. Game on.

  I’ve long remembered that moment because it reminds me that no stereotype fits people with intellectual disabilities. Some like to think that everyone with a disability is kind and open or sweet and gentle but that’s no more true of this population than it is of any other. Stereotyping isn’t wrong because it’s politically incorrect; it’s wrong because it’s factually incorrect. Labels are designed to group people together for one practical need or another, and we use them all the time for perfectly reasonable purposes. We group people by age to determine who votes and who doesn’t. We group people by gender for restrooms. But none of those groupings define the person, and most groupings do something far worse: they create assumptions and prejudices.

  King Davis is a person with an intellectual disability, but as it turned out, he was also an aggressive rival and a cocky competitor who wanted to have fun and win. Most important, he was uninterested in faking how he felt. It may be that he experienced a moment of concern when he saw me knocked down, but that was overridden by his excitement about the game and his focus on winning. And unlike most people, he didn’t decide to hide his desire to win in order to conform to anyone’s assumptions of what the socially “correct” feeling was in that moment. He was focused on kicking my ass and having fun doing it!

  I’ve heard similar stories over and over again from thousands of people who have been surprised and disarmed by the emotional honesty that often radiates from people with intellectual differences. Most of us are afraid to be emotionally honest much of the time. We’re afraid that our feelings will prove embarrassing to ourselves or hurtful to others, so we hold them in or edit them through socially acceptable filters or blurt them out in gossip. So the circle goes on and on—unstated feelings lead to unstated feelings and we miss the important stuff and instead have conversations about nothing or the weather or some celebrity breakup.

  Not so in the world of intellectual difability.* At a Unified summer camp called Camp Pals, volunteer counselors and support staff spend a week playing sports and living together and taking trips and all the while, hearing exactly how all of the campers with Down syndrome feel all the time. And it’s a riot! “There are so many problems in the world and there is so much BS in the way people act toward one another,” said Felix Llanos, a young man who worked with the campers with Down syndrome for a week in a variety of support roles. “But not here. Here, there’s none of that. Here people wear their hearts on their sleeves. One camper is scared of thunder and he just showed it and I was like ‘Wow, man. That is so cool that you can just be who you are.’ People out there in the streets—man, the world is so screwed up sometimes—people try to get over on the next person or compensate for themselves by putting up a front and it’s all just so many lies. But here, everyone is just themselves.”

  As Llanos spoke, I remembered one evening when I was at the World Economic Forum in Davos, Switzerland, where thousands of the world’s most powerful and wealthy people convene every year to “improve the state of the world.” I called my daughter Rose after one especially exhausting day to report on my efforts in selling the story of Special Olympics to the world’s most rich and famous. I was telling her how tiring it was, and she, a spiritual intuitive herself, kept pushing me, asking me what it was that made me feel so depleted. “I guess it’s that these folks are wound so tight that they take the joy out of me.”

  “I guess,” Rose said, “those are the most scared peop
le in the world. I guess it’s understandable that they’d be unable to have much fun.”

  “You’re right, Rose. They have a lot to be afraid of.”

  “The most scared people in the world” is not the way that the World Economic Forum advertises their elite guest list. Most of us assume that the people with Down syndrome at Camp Pals better fit that description. Then again, maybe not. Llanos was onto something when he said that most people “out there” put on fronts and pretend to be something they’re not while everyone at camp “is just themselves.” What’s more scary than having to fight every day to prove superiority and gain massive wealth and act like someone different from who you are in order to feel safe and secure? And what could be less scary than being strong enough to be just yourself?

  Most parents try to create an environment in their homes where their children can feel free to be “just themselves,” and Linda and I were no different. We tried to raise all five of our children—Rose, Tim, Sam, Kathleen, and Caroline—to know that their home is one where they can always be exactly who they are. We also tried to make sure that “being yourself” never translated into “being spoiled and entitled” by constantly reminding them that however much we loved them, to be a creature of infinite value doesn’t mean that you’re superior but only unique. Together, we tried to teach that all people are beautiful and we tried to deepen that lesson in prayer and practice it in welcoming relationships. Welcome and prayer: it was our own little formula.

  But like most parents, we couldn’t make those lessons come to life in the abstract, so we got help. Beginning when Rose and Tim were still in elementary school, Linda and her friend Anne Yap decided to form a Special Olympics Unified Basketball team in our neighborhood. Almost from birth, our children attended Special Olympics games and events, so the idea of sports with people with differences was not new to them. And we had the added advantage of living next door to Anne and Dean Yap, who had three beautiful children, one of whom, Maureen, has Down syndrome. Maureen was the same age as our son Sam, and they attended school together. But after school, Maureen was also very good at eluding her parents’ watchful eyes and sneaking into our backyard to play on our swing set. Among the many joys of living next to the Yaps was the chance to look out the window at random times and see Maureen pushing herself gently on the swing set with no one around, a slightly curious but content look on her face. She was mischievous, and she was a delight.