Fully Alive_Discovering What Matters Most

by Timothy Shriver

  In the months that followed, Loretta became a sought-after speaker in New Haven. Local volunteer groups and civic clubs and university departments all asked if she would come to educate their membership on the upcoming games and the messages of Special Olympics. She came to stay with Linda and me frequently, returning home only when Rita was ill or needed help. She was a star everywhere she went, approaching every speaking opportunity with humility, never fussing about her hair, dressed nicely, as Rita would have expected, but never standing out. I must have seen her give dozens of speeches in those days, and never once did she have a note in her hand. I’m not bending the truth in saying that she received a standing ovation every time.

  Loretta was fast becoming the ambassador of Special Olympics to the world, and her popularity gave me the nerve to try a new avenue of recognition for her. Yale was hosting the games and was fully immersed in Special Olympics. Perhaps, I thought, the university could offer Loretta an honorary degree, or better still, invite her to be the commencement speaker. Had a person with an intellectual disability ever been given an honorary degree by a college or university in the United States? I guessed not. Had such a person ever been welcomed to the commencement exercises of an Ivy League university? I was sure not. So I called my friend Donald Cohen, the director of the Yale Child Study Center and a close advisor to the Yale Corporation.

  “I think Yale should give Loretta Claiborne an honorary degree for her pioneering accomplishments,” I campaigned. “She’s a first in history—a person with an intellectual disability who’s become a world-class athlete, a powerful self-advocate, a captivating motivational speaker. She’s blazing new ground, Donald. She’s exactly the kind of person that Yale loves to celebrate. What do you think?”

  There was long pause at the other end of the line, as Donald tried to figure out a way to be kind.

  “What a sweet idea. It would be wonderful to help Loretta somehow, maybe do something at Special Olympics for her…”

  “No, no. I’m not suggesting we ‘do something’ for Loretta. Loretta’s just fine. I’m suggesting that Yale do something for Yale by recognizing her as someone the school is proud to call its own.”

  “Okay, I get it, but Tim—let’s be realistic. This is Yale. Yale isn’t going to do this kind of thing. I’m happy to run it by a few people if you want; I really do think it’s a wonderful idea. But to be blunt, this is not going to happen. It just won’t fit at Yale.”

  “That’s the whole point. No one expects it, but Yale is creative and smart enough to do something like this.”

  “Look, Yale is a place that prides itself on intellectual achievement. We can talk to one another all we want, but I strongly recommend looking elsewhere. Yale’s not going to end up giving Loretta Claiborne an honorary degree. She’s just not what Yale is about.”

  In the end it was Quinnipiac University, a rising liberal arts college in nearby Hamden, Connecticut, that recognized how spectacular Loretta was. Quinnipiac was then emerging as one of the nation’s leading small institutions of higher education, and it had no problem welcoming Loretta Claiborne to commencement exercises and awarding her a Doctor of Humane Letters degree, honoris causa. Rita was unable to make the trip to Connecticut, but Linda and I were invited to the commencement, as were my parents and children.

  The day was a blazing beauty with not a cloud in the sky as “Pomp and Circumstance” played on the open courtyard nestled against Connecticut woods and hills. Graduates processed into the ceremony with typically brilliant young smiles and ribbons of distinction. Parents lined the sides of the procession with cameras and shouts of good cheer. As the ceremony was concluding and the students were getting rowdy, President John Lahey rose to give the closing words. He walked to the podium in full regalia and then asked everyone for just one more moment of quiet. As the students settled down, he turned to Loretta and invited her up to the podium, asking if she would be willing to give the benediction. “I know it isn’t customary to ask an honorary degree recipient who hasn’t prepared for the occasion to speak, but I am taking the risk nonetheless. Loretta: Would you close our commencement proceedings?”

  With only the slightest pause, Loretta rose and walked slowly to the podium with a distant expression. “Students, faculty, parents, and friends,” she said, carefully enunciating each word.

  “I’m honored to be here … This is an anniversary for me. It’s been thirty years and three days exactly since I’d been carted off to go to Eastern State School and Hospital. I was told that I wasn’t going to be anything but to be put in an institution.

  “Today, I stand here amongst you, these students here, and today I am proud to say, I am somebody. Yes!

  “… And today, though it’s too late for me to go to college, today I am proud when I hear a kid who makes the honor roll. But I am more proud when I hear somebody who is mentally challenged—like I did last year back in Pennsylvania, to hear a man go to an institution of higher learning, then going on to be a nurse’s aide or what have you. That wasn’t possible in 1966 or ’65, when I was supposed to go to the institution. Today it is, because we have opened up.

  “… [I had] one teacher, she had many students, and this is a life she changed. If you can change one, you are successful. And I hope that you have that student that you can be successful with.

  “Good luck, God bless, and thank you.”

  Thousands of students and parents and friends rose in thunderous applause. “I am somebody” never seemed so pure. I’d heard it before, but listening to Loretta, I felt it. Everybody is somebody. She waved haltingly as the applause continued. I knew I was looking at my new role model, and I knew she had a lot left to teach me about how to live that truth.

  The 1995 Special Olympics World Games opened a few weeks later. They were my first experience with leading a global event, and I spent most of the time nervous and exhausted. But the games were an amazing experience, too. Towns all over Connecticut hosted national delegations of Special Olympics athletes in the first ever “Host Town” program. Two pioneering doctors, Steve Perlman and Paul Berman, set up health screening centers and launched a worldwide Special Olympics campaign to end discrimination against people with intellectual disabilities in health care institutions and improve care. We held symposia exploring the religious, legal, and psychosocial dimensions of the lives of people with intellectual disabilities, and one of the speakers was the spiritual scholar Henri Nouwen. The games were nicknamed “The Games of Inclusion,” heralding the shifting focus of the world of people with intellectual disabilities toward inclusion and respect. The state of Connecticut and the city of New Haven were aglow. The president of the United States opened the games, and several of his cabinet members visited during the week. It was thrilling.

  When the games were over, we faced all the work of closing down an office where thousands of volunteers had worked for more than a year. Loretta continued coming to New Haven to help out. Over dinner at night with Linda and our kids, we’d reminisce about all the stories of the games—the beachfront aquatics races, the fierce competition of medal round games in basketball and volleyball, and the surreal finish of the first-ever Special Olympics Marathon, which Troy Rutter from Pennsylvania won in under three hours.

  Then Loretta brought up a subject neither Linda nor I was prepared for: “Why don’t you move to Washington and take over Special Olympics?”

  “No, we couldn’t,” we answered bluntly. We were happy in New Haven. Our children were all in school there. I was preparing to reenter the school system when the games work was finished.

  “You should go to Special Olympics,” was Loretta’s straightforward reply. “I think that’s the place for you.”

  That idea was, as the saying goes, a “nonstarter.” The last thing on my list of career goals was to succeed my mother and father in a Washington, DC, office, working full-time for Special Olympics. Loretta had an uncanny understanding of what was important to me in life, but on this one, she was just wrong.
Every time she brought up the future of the Special Olympics international office, I smiled and changed the subject. It was much more fun to talk about her than to talk about me. I wanted her permission to pitch Hollywood on making a movie about her life, and I wanted to talk about how she felt about Rita’s absence from the games. I wanted her to come visit our children’s schools to talk to elementary children about difference. I even wanted her to take me on runs—short ones! But I did not want to talk about moving.

  At the same time, Linda and I knew that Loretta’s advice mattered. More than anyone, Loretta Claiborne was—and remains—fully alive. She knows how to see without judging. She knows how to play like there’s no scoreboard. And she knows how to seize the chance to make a difference and accept the risks of trying. She was being what I was trying to be: a person who focused on the elusive intimacy of caring and who fell in love with people she hadn’t even met. As much as I tried not to, I had to listen to her.

  Eight months after the games, ESPN decided to give Loretta the Arthur Ashe Courage Award—its highest award, given to individuals whose contributions transcend sports. On ESPY night, Linda and I took the train down to Radio City Music Hall in New York to be in the audience. My mother made the trip up from Washington. Loretta herself was hosted in a fancy New York hotel with a limousine at her disposal to take her to and from the theater for rehearsals and the show. ESPN agreed to allocate a few tickets for other Special Olympics athletes and friends of Loretta’s who wanted to be a part of the evening. We were Loretta’s fan club, and we arrived at the theater flush with excitement, as we walked by baseball Hall of Famer Joe Morgan and tennis greats Venus and Serena Williams and football legends Joe Montana and James Brown. Jeanne Moutoussamy Ashe, Arthur’s widow and a beautiful photographer and human being in her own right, sat nearby in honor of Loretta.

  Denzel Washington was the surprise presenter for the Arthur Ashe award. He spoke with an actor’s eloquence of Arthur Ashe and his lifelong bravery in the face of racial prejudice and the stigma of AIDS. “Desire. Strength. Heart. In the world of sports, those words are used all too frequently to describe a big play, key moment, comeback victory. But to understand the true meaning of those words, one need only to think of Arthur Ashe. Every day of her life, Loretta Claiborne exemplifies that perseverance and ability of spirit.” Then he introduced Loretta with a short video about her life, in which her beloved teacher Ms. Weaver described the bruised child who arrived at her class at the age of twelve, angry but hiding a tenderness within her. It chronicled her entry into the Special Olympics world and her emergence as a runner, as a marathon standout, as a teacher of tolerance and friendship. When the video was over, Washington finished the introduction with the simple words: “Ladies and gentlemen, it gives me great pleasure to present this award to Loretta Claiborne.”

  Loretta emerged from behind a curtain onto the huge stage. The crowd greeted her with applause, but no one really knew who she was—a middle-aged African-American woman with an average human body and braided hair and a dress from Walmart, and not a single endorsement or contract or scandal to her name. Washington handed her the award and slipped away.

  She thanked God. She thanked her teacher, Miss Weaver, and her mother, Rita. She thanked Special Olympics. She thanked my mother. And she concluded her short remarks by saying, “If I could take this award and break it up in over a million pieces, I would love to do that and split it with every Special Olympian. Thank you.”

  Other winners say similar things. But there was one thing different about Loretta: she meant it.

  ELEVEN

  Tough World

  “Maybe we should move to Washington,” Linda said one day, cracking open the door to a change of life.

  We thought about what we’d be leaving behind and what we’d be gaining. We thought about the effect on our children, on our marriage, on our careers, and more. As we looked at the full picture, everything we could think of told us not to leave. We loved New Haven. Our children had been born there; most of our friends lived there. The kids I’d taught were scattered in virtually every neighborhood of the city, making it impossible to go anywhere without seeing a friendly face. My mentors were there, our church was there, our roots were there. But there was something—and someone (Loretta!)—that told us we needed to go. We decided to move.

  Over the course of several weeks in the spring of 1996, we shared the news that we were leaving for Washington and taking up a new role in the Special Olympics movement full-time. What surprised me most about those conversations was the reaction most people had upon learning that I was going to be working for Special Olympics. “That’s so nice,” was the most common response. The word “nice” came up over and over again.

  This irritated me immensely. There was something patronizing and dismissive about that word, and it was inaccurate. Whatever Special Olympics is, it isn’t “nice.” Nice isn’t about digging deep into the brokenness and healing of life. Nice isn’t about the centering intelligence that enables human beings to welcome one another with love. Nice isn’t about challenging the world to uproot deep and stubborn prejudices that destroy the lives of millions of people. My work in education had always been edgy, tough, confrontational, empowering. I saw Special Olympics the same way, but I realized others didn’t. Too many perceived it to be sweet—a break on a Saturday afternoon for “unfortunate” children. Sporting events on Saturday afternoons were indeed a big part of what Special Olympics did around the world, but that description failed miserably to capture the muscular and transformational and empowering moments that I was experiencing.

  I saw this lack of understanding springing from discomfort with disability. It was—and is—something to be avoided. Like small children who shut their eyes to make a scary thing go away, many prefer not to look at it directly. If we hear that a neighbor has welcomed a child with a disability into the world, most are still likely to greet the news with discomfort or sadness: “I’m sorry.” Some even question why the baby was carried to term: “Didn’t they do a prenatal test?”

  Almost immediately after starting at Special Olympics, I went on the road to meet with athletes, volunteers, and staff around the world. The first thing I found was that the world hadn’t changed as much as I’d thought. Injustice, brutality, indifference, and intolerance were still pervasive. But I also found an indomitable energy source: the parents of many of our athletes, who had learned that, in the words of Shakespeare, “Love is not love / Which alters when it alteration finds.” They’d found a way to stay the course of love even when everything was against them. As parents, they were the best teachers a young father like me could have asked for. As social change activists, they were hidden treasures ready to campaign for a more inclusive and just society if given the chance.

  For starters, remember where the parents of children with differences come from. Imagine a mother expecting her first child. She and those around her are filled with anticipation. Is it a boy or a girl? Will he be elfin or chubby? Will her eyes be brown or blue? Will his skin be dark or fair? Will he be healthy? Will she be healthy? No matter where that baby arrives—in a small village or a big city, a home or a hospital, the first question is almost always the same: “Is the baby okay?”

  On October 4, 1985, Special Olympics mom Rosario Marin heard the answer to that question every new parent dreads: “No. I’m sorry, Rosario. Your baby is not okay. He has Down syndrome.” It was the most devastating moment of her life. A minute before, her dream of her new baby son was filled with images of nursing him and teaching him to walk and playing games with him, beaming with pride as he grew and grew. And then, in the blink of an eye, she was lying in a hospital bed, exhausted from labor and seemingly drowning with the words ringing in her ears. Baby Eric was in intensive care. His life was in jeopardy. He wasn’t okay. His future was not okay. She was not okay.

  Almost every parent in the Special Olympics movement has a similar moment they can recount—like the dad in South Africa who told m
e that when his daughter was born, the doctor told him she was “a cabbage,” or like the mother who was told by her doctor that her baby was “an exchange” for the sins of her past. The author and life coach Martha Beck was told by elite doctors at Harvard Medical School that her child with Down syndrome, diagnosed before delivery, was the equivalent of a cancerous tumor that needed to be excised. These moments are burned into the consciousness of parents who have special needs children. In the overwhelming majority of cases, they had no reason to expect that their child would be anything other than healthy and “normal.” And in an instant, their whole view of the world and of their future collapsed. “Your baby is not okay.”

  Rosario told me what happened next. “I can remember feeling devastated and alone and terrified. I was lying on the bed, and I began to cry and cry and cry. And then I felt myself begin to pray to God for help in this moment. And I know what I prayed. I prayed that the baby would die. I cannot escape it. I prayed that God would take the baby and leave me to go back to my life. I prayed that my own baby would die.”

  The Nobel Prize winner Kenzaburo Oe wrote a searing and frightening novel in 1964 about a Japanese intellectual, Bird, who finds himself in much the same situation. He is phoned at home and told to rush to the hospital—that his wife has delivered an “abnormal” baby. Bird careens through the dawn-lit streets of Tokyo on his bike on his way to the hospital. He gropes, scuttles, and feels dizzy. He imagines the leaves above the streets soaked with water like deep oceans of green. “If those oceans all at once collapsed, Bird and his bike would be drowned in a raw-green-smelling flood. Bird felt threatened by the trees. High above him, the leaves massed on the topmost branches were moaning in the wind. Blackish grey all over … a mean sky that seemed ashamed.” Bird has fallen into a grotesque world of terror where everything appears abnormal, freakish, and threatening. He arrives at the hospital to find a doctor who is hairy, obese, and soiled. His mother-in-law is “half buried as if trying not to vomit.” The baby is “wretched.” He feels himself digging a hole deep into the earth, beyond the reach of light.* Disability can be terrifying.