Fully Alive_Discovering What Matters Most

by Timothy Shriver

  We live in a world of walls that help us keep unwanted things out. Disability is one of those things we want to keep out. The child is not okay, or “abnormal,” or “disabled”—all those are qualities we want to keep on the outside of our walls. But a newborn baby crosses the wall in the most permanent way. The child’s presence is like a question: Can you face what seems to be a future emptied of pleasure and satisfaction because of me? Can you, Mom or Dad, live with the reality that your own flesh and blood is terrifying?

  Obviously, these questions are immediate, wrenching, and real for each and every parent of a Special Olympics athlete. One of the great gifts of the Special Olympics movement is that it creates communities of parents who have lived this scene and ones similar to it, and it gives them a way to share the stories of how they have worked out an answer to these questions.

  One father, Phoenix Zheng, shared his struggle with me in real time. His was the most unusual e-mail I have ever received. One morning, I arrived at my office in downtown Washington, DC, and opened the following message in my inbox, addressed to a dozen or so random recipients:

  I do need your help

  My daught borned in 22th August this year

  I noticed her is smaller than other babys and quite hard to feed. The child was examined and confirmed she has Down Syndrome. So tough world.

  You know people’s Life isn’t very well and the attitude of people dealing with Child who has DS is hardhearted. So that there are so high mortality rate of Neonatal baby with DS. People advice us to kill the baby to make sure our life don’t get so tough. However, I still don’t want to give up.

  Could you give me a hand, give me some advice how to cure our pitty baby. Her sile is still so pure.

  I prefer to try rather than to kill her by myself.

  Could you replay me as soon as possible, I don’t how long I can bare the press that peole give us.

  Please.

  Thanks a lot

  I couldn’t absorb the words. I read the e-mail again to see if I’d misunderstood the broken English. I read it again and again and again. The words and the meaning didn’t change. Tough world. Hardhearted. People advice us to kill the baby. I don’t want to give up. Pitty baby. Pitty baby. Pitty baby. Sile so pure. So pure. So pure. I prefer to try rather than to kill her by myself. Kill her by myself. Kill her by myself. I don’t know how long I can bare the press. Please. Please. Please.

  I believe that all prayers are one of two expressions: “please” or “thank you.” And I believe that prayer is not just what a religious person says in a church or what a child recites at bedtime, but also the wordless ache of the soul, seeking the presence of the divine in the begging of “please” or the peacefulness of “thank you.” I believe that “please” can be directed toward the one God of Abraham or toward the many gods of earth and sky or toward the godless peace of emptiness. And most of all, I believe that same yearning of “please” can be heard not just by a God who is somewhere above us or beyond us, but also by the God within each of us who hears with the ears of the heart and knows when “please” means something far more than a request for a favor or an outcome. In prayer, “please” is a cry for love, not things. And sometimes we get to answer that cry for each other.

  I wrote back:

  My name is Timothy Shriver. I have received your request for help and we in Special Olympics want to help. Our goal is to change the hard attitudes that you refer to and replace them with attitudes of happiness and respect for children. But you have a more immediate challenge with a very young and beautiful baby. Please know we will do anything we can to insure that you do not feel that you should harm the baby. We would like to get in touch with you immediately. I firmly believe that your child will grow up to be a wonderful human being and we will do whatever we can to help make that belief come true.

  On behalf of the whole Special Olympics movement around the world, I want to congratulate you on the birth of your daughter. I am sure she is wonderful. I know you will be very proud of her for many years to come.

  Zheng responded to my e-mail almost immediately.

  Dear Timothy Shriver

  Thank you for help in the hardest time of my life.

  My English is very poor. Please forgive me.

  Whatever happen in the future, I will never forget your help.

  On that very day, our leader for Special Olympics East Asia, Dr. Dicken Yung, was in Shanghai with his wife, Meilin, a thirty-year volunteer for Special Olympics. Within hours, they were in a car headed to meet Zheng and his wife and daughter. Dicken noticed immediately that in the first e-mail, the child had not been given a name, a sure sign that the parents had not accepted her as their child yet. He also had the great benefit of common sense and knew that both Zheng and his wife were exhausted. When Dicken and Meilin arrived to meet Zheng, the first thing they did was take him and his wife to a hotel and book them a room, then stay with the baby so the parents could get some sleep. It was a simple act that let the Zhengs know they were not alone, and never would be.

  Two days later, Zheng and his wife named their baby Pearl. From then on, Pearl and her parents began life together as a family, and Zheng wrote to me on September 2 as though he was a new man: “I have met with Dicken Yung and his wife. We have a good time … I will bring my baby up with all my effort. Nothing can stop me now.” He attached a picture of his newborn baby to the e-mail and I sent it to everyone in our office. I could hardly believe the turnaround—the dread that the first e-mail had triggered, the sense of emergency that accompanied my response, the good fortune of Dicken and Meilin’s nearby presence and wisdom, the naming of baby Pearl. It all seemed miraculous, and in a sense it was.

  I know that many people dismiss miracles as the workings of overactive imaginations or the stubborn delusions of superstitious minds. But “miracle” need not mean a manipulation of the laws of nature and history. It can also be a way of describing a dramatic change of mind and heart at the most fundamental levels of reality. A miracle can be the total deconstruction of a way of seeing the world, where the lessons and expectations of the past suddenly yield to a previously impossible perception of reality. A miracle, in its simplest spiritual form, is an experience of love “flooding our hearts” from a source unknown, of “falling” into a new reality previously unimagined, of seeing the world and others with an inexhaustible joy that is within time but beyond it, too. Zheng and his daughter, Pearl, were a miracle for me and Dicken and Meilin.

  * * *

  The contemporary mystic Jean Vanier is a virtual conduit for miraculous changes of heart. Vanier was born in Geneva, Switzerland, in 1928, the son of a career diplomat who served as the nineteenth governor general of Canada. Jean was something of a prodigy, entering the Royal Naval College in England at the age of thirteen. He served as an officer during World War II, but in 1950 resigned the commission to search for his faith. He landed as a student at the Institut Catholique in Paris, and there met his lifelong mentor Pere Tomas Philippe, a Dominican priest who taught his students not only metaphysics but also prayer and service to the poor. With Pere Tomas, Vanier studied some of the most philosophically complex masters of antiquity and scholasticism, including Aristotle and Thomas Aquinas. These writers challenged him to think deeply, critically, and precisely about the search for meaning in life. He wrote a dissertation titled “Happiness: the Principle and Purpose of Aristotelian Morality,” and then he returned home to Canada and the life of a professor.

  But Vanier soon returned to visit Pere Tomas, who had been moved to a new post: chaplain at Val Fleuri, an institution for people with intellectual disabilities, located an hour north of Paris. On one occasion, Vanier visited a nearby psychiatric hospital to offer support and care to the patients, and there he met two men who would change his life: Raphael Simi and Philippe Seux. “They were in despair,” he said later. They wanted out—to leave the hospital prison to which they’d been banished. They begged Vanier to take them with him. Vanier couldn’t
bear saying no and bought a small home near the institution. He called it, in French, “L’Arche”: the Ark. He invited Raphael and Philippe to come to live with him and thus, in one small house, began an international organization that today includes 145 communities in 40 nations around the world.

  “My goal was simply to welcome these men and to help relieve their anguish,” said Vanier. “To tell them that I wanted to live with them and that I was choosing to live in a home with them. At the heart of our vision is this very simple message. So many people with handicaps have been so humiliated and so degraded that they live a daily anguish and loneliness. Our vision is different: we want to welcome the stranger—the person who feels like a stranger, an outcast, a person who is not accepted—we welcome you to L’Arche. And our message is that you are more beautiful than you can possibly imagine.”

  On one occasion, I had the honor to listen to Vanier reflect on the mysterious relationship between the human and the divine. He spoke just a few feet from his home at L’Arche, where he’s lived for more than forty years, in a community of people with and without intellectual disabilities who choose to live together and grow in relationships with one another. In the small stone chapel in the village of Trosly, Vanier spoke about the mysterious power of fragility to awaken us to the presence of God:

  In the Bible, we hear over and over again that all human life is fragile, tender, frail. To enter into a relationship with human frailty is to be asked to discover that God is fragile, too. And we find ourselves asking, “What are we to learn from God’s fragility?”

  First, fragility reveals that God’s most powerful words come in tenderness and without any aggression. God’s words are “I love you.” This is the deep meaning of God. God appears in weakness and tenderness as if looking for us saying, “I love you. Where are you?” God called to Adam and Eve, “Where are you?” And their answer to God was like ours today, “We are afraid.” Afraid of what? Afraid of being naked? Afraid of not being successful? Afraid of declining or of feeling lost in a closed world? Afraid of being inadequate or forgotten?

  This is the experience of disabilities. In our imaginations, we can look upon a child with a disability and see that the child is the stranger to us, the one who does not fit into our world. So many of the stories of the Jewish people are about strangers, about feeling like a stranger and about welcoming strangers. But our first reaction to the stranger is almost always the same: we are afraid.

  But then we hear the prophet’s soft voice of love as if calling out from the deep, “I have called you by your name and you are mine.” This is the voice of the miracle of love: “Do not be afraid. You are mine, you are mine. If you go through rivers and flames and danger, no burn and no harm will come to you. Do not be afraid. I love you.”

  This is what can happen with our encounter with the little baby. The baby is fragile, stranger, tender, and in our encounter, we let ourselves be touched by these gifts and we are changed, softened, loved. The child comes to the places where we are wounded and transforms our wounds. Once you’ve heard that voice and once you’ve had that experience, the love power comes to you and you can hear the voice of Isaiah saying “You who used to mourn, rejoice with delight. Exult. Enjoy. I will take care of you and make peace flow, flow, flow.”

  I quote Vanier at such length because I know of no one else who has ventured so deeply into the mystery of encounter with the fear and strangeness of disability and made it so clear that this journey into and through pain belongs to all of us. Vanier’s voice has a way of embracing the voices of so many parents who come to Special Olympics telling us that they once were lost as they tried to face their children’s powerlessness, but are now changed, transformed, and found. It also has a way of reminding each of us that nakedness and fear are the pathways to healing.

  Rosario Marin, who had prayed that God would spare her the burden of raising a baby with Down syndrome, was given instead a tiny newborn to take home. Six months later, he developed a high fever. She found herself back at the hospital with her son in the intensive care unit for the second time in his short life. Once again, Rosario agonized over this fragile child who was perched dangerously close to death’s door. And once again, she closed her eyes in prayer and called out to God from the depths of her soul. But this time, her prayer was different: “Dear God. Please let my baby live.” Eric was her miracle, the one she had been terrified to encounter but who had become the voice of God in her life. She couldn’t bear to live without him.

  There is something rare and unvarnished in the love that parents such as Rosario and Phoenix experience. Unlike almost any other parents, they begin their experience with their children in grief. Their children don’t come to them with adorable oohs and aahs, or with the expected rush of congratulations from friends and families. People greet their children with words like “I’m sorry,” “Tough world,” as Zheng wrote, or—in the grotesque and surreal world of Kenzaburo Oe—“wretched.” Right from the start, these parents often grieve the painful loss of what they thought they would love, and they grieve what they thought would be lovable. They begin the journey in pain and survive it by learning that what they feared would be unlovable is the opposite.

  Spiritual writers have for centuries written of the way in which deep love so often emerges from experiences of loss and vulnerability, and for this reason, they teach, vulnerability is not to be feared. Saint Francis experienced his first conversion when he confronted the feared leper of his community and kissed him. After his kiss, he notes a profound change: “When I left [the lepers], that which seemed bitter to me was changed into sweetness of soul and body; and afterward I lingered a little and left the world.” It is difficult to capture exactly what Francis means when he says that he “left the world,” but it is clear that he touched a different dimension of reality, and the sweetness was a source of healing and new life within his soul and body. He was no longer afraid. The psalmist writes of this same transformative power when he cowers, “hard pressed and falling,” but then finds that he, the rejected “stone” who was broken and discarded, has become the priceless “cornerstone.” And he exclaims: “it is wonderful in our eyes” (Psalm 118).

  * * *

  On one Special Olympics trip, I visited a small institution for people with intellectual disabilities outside of Cape Town, South Africa, where about fifty adults with severe disabilities were housed. I was there thanks to the generosity of a hundred of the world’s most gifted musical artists, who’d raised almost $100 million for Special Olympics by selling Christmas music. Under the leadership of my brother Bobby and the legendary music team of Jimmy and Vicki Iovine, stars such as Stevie Wonder, Jon Bon Jovi, Stevie Nicks, and B. B. King had given the proceeds of their recordings to support bringing the freedom and joy of Special Olympics to the world’s poorest citizens. And in Cape Town, as in thousands of other communities worldwide, we put their generosity to work.

  The conditions there were poor, with several men and women in each room, concrete floors, dark halls, and limited facilities. Most of the residents had complex needs that their families were unable to care for at home. My colleague from Connecticut, Peter Wheeler, had joined our global team and traveled to South Africa to help raise the profile of our movement and he’d found his way to the institution, called a “Sanctuary.” He’d introduced the Special Olympics “Motor Activities Development Program” to the residents there, a series of simple activities designed for people with very severe challenges. On the day of my visit, dozens of the residents joined me in the small common room of the facility and gathered in lines and circles to show off their skills. Small events are “Special Olympics,” too, and they take place by the thousands all over the world. I was there to observe and support this one.

  Several of the athletes arrived in the common room in wheelchairs. Most were not able to use language to communicate. Their caregivers pushed their chairs or helped them with their walkers or simply held their hands as they came into the room. The p
ace of arrivals was slow and deliberate. There was no rush. No one had anywhere else to go.

  As I watched a group of the residents throw bean bags and kick inflated balls and perform the lifting and lowering of the brightly colored sheet, I sat next to a resident who was there only to watch, not to participate. His disabilities were too severe even for these basic activities. He was seated in a wheelchair with his head resting against an enveloping cushioned headrest that protected his neck and shoulders. His hands were drawn into his body, thin and missing muscle, knotted tight and unmoving. His head was cocked slightly to the side, his mouth just open, his eyes fixed ahead but not moving to follow the activities. The games being played in front of us were rising in enthusiasm with an occasional cheer and loud noise popping from one or another of the athletes as they became more and more animated by their tasks. The room was lighting up and smiles crept onto the many faces that were assembled.

  The young man sitting next to me did not move, but the woman at his side began to massage the knotted muscles of his neck and shoulders, gentle and absent-minded, watching the games. I thought to myself that she must be his mother. She watched the other residents play but her hand worked on his neck unconsciously and with tenderness. I leaned toward her.

  “My name is Tim Shriver. It’s so nice to meet you here.”