Fully Alive

by Timothy Shriver

  At graduation in 2013, Colin and Treveon took the message of “We Are Able” to a new and climactic level. For virtually his whole life, Treveon has been in a wheelchair. He’s a great communicator, but he doesn’t use words. Instead he uses animated facial expressions, gestures with his arms, and barely formulated sounds to communicate what’s important. So early in his senior year, he told his Unified partner, Colin, what was most important to him: somehow, he wanted to walk across the stage when he received his diploma at graduation. Colin heard him loud and clear, and together they committed to a daily routine of exercises and therapies that would increase the chances that Treveon could bear his own weight. Medically, it seemed impossible with legs and muscle systems made unworkable by disease. But they decided to try nonetheless, and they worked together every day of the week for the entire year. No exceptions. Raw determination. Every day. Grit magnified on the hope that Treveon could stand.

  And wouldn’t you know it: graduation day was May 16, 2013, and with Colin standing behind him, Treveon was wheeled onto the stage and then rose out of his wheelchair and into a walker with a brace for his elbows and with the entire school cheering and crying and standing and pulling for him, Treveon walked. He walked—it’s on video—about three steps. And the principal, Jeff Wooton, handed him his diploma as he stood and waved at his classmates and leaned back toward Colin, who was covering his every move. No one could mistake the moment for anything other than what it was: a moment when two people who were fully alive together joined to become the symbol of a new Kellis High School, tilting it inexorably toward a culture of unity. Of course, Kellis still has work to do, and of course, it isn’t perfect. But thanks to Coach Wakeford and Colin and Treveon and dozens of other young leaders, it’s a place where it is safe to be caring and vulnerable; safe to take a chance; safe to believe.

  There’s a distinctive energy in moments where belief and struggle create breakthroughs like these, an alertness and crispness that’s arresting. The great writer Alice Walker captured the energy of such moments beautifully:

  There is always a moment in any kind of struggle when one feels in full bloom. Vivid. Alive … To be such a person or to witness anyone at this moment of transcendent presence is to know that what is human is linked, by a daring comparison, to what is divine. During my years of being close to people engaged in changing the world, I have seen fear turn into courage. Sorrow into joy. Funerals into celebrations. Because whatever the consequences, people, standing side by side, have expressed who they really are, and that ultimately they believe in the love of the world and each other enough to be that.

  * * *

  I love the idea of feeling “in full bloom.” And I love even more that it’s possible to be in full bloom just by standing “side by side” with others in pursuit of the daring connection between the human and the divine. Walker reminds us of the lessons of the atheletes and their families. I think she’s right: when we join in the “struggle,” we find others and we find ourselves. This is the real “something bigger.”

  One final story. John Frank Stephens was born with Down syndrome on April 9, 1992, in Arkansas, and moved to Virginia in 1996. He went to public school there, graduated as a letterman from Chantilly High School, and played basketball, golf, softball, and other sports in Special Olympics. Today, his business card reads “Actor, Author, Advocate,” and he’s proved himself in each. He’s five feet one-half inch tall. (He likes to mention the half inch.)

  A few years ago, he led a delegation of advocates to Capitol Hill for a day of meetings with senators and representatives and leading policy makers. His agenda was simple: to ask for more funding for Special Olympics programs promoting health and inclusive schools and international development. He went from office to office for a full day, stopping to speak to anyone who would listen.

  Despite their best efforts, Frank and his colleagues were only partially successful. Trips to Capitol Hill can be frustrating for anyone, and this one was intensely frustrating to Frank and his fellow athletes. Most meetings ended with brush-off pleasantries: “The congressman thanks you for your message and your visit and will consider your request.” “The senator wants you to know how much he appreciates your work and only wishes that he could do more.” And so on.

  At the end of the long day, the team of athletes and volunteers and family members gathered for a reception in one of the function rooms in the House of Representatives’ Cannon Building. About fifty of us wandered into a hearing room for refreshments and reflections. Elected representatives whom we’d met or tried to meet were invited to stop by and share a message. A top-ranking Democratic leader of the House of Representatives, Steny Hoyer, stopped by the reception and spoke of his admiration for the athletes. Similarly, Roy Blunt, a supportive Republican from the state of Missouri, came by to say he would be a sponsor of the Special Olympics legislation. The leader of disability issues, Senator Tom Harkin, spoke of his unconditional support. My cousin Patrick Kennedy, a representative from Rhode Island at the time, swept into the room with his typical good cheer. He exhorted the group to fight harder and lobby more. “The Congress of the United States can and must do more,” Patrick declared. “We cannot stand by as people with mental illness and intellectual disabilities get treated as second-class citizens in this country, and I’m ready to fight with you.” A cheer rose up.

  As we began to wrap up, I extended one last offer to the room: “Would any of the athletes who worked today want to add any last thoughts?” I looked around. It was late. Rides home were waiting; everyone was tired. But one person walked slowly to the microphone: it was Frank Stephens, all five feet and one-half inch of his well-dressed frame.

  He began to speak, very slowly and with his characteristic cadence—a few words followed by a pause and then the rest of the sentence. He began, “I want to say that I am … ha-ha-ha-happy to be here.” Nothing special. A typical greeting. Frank continued without a note. He recognized his father and mother, and then thanked the volunteers of his home state of Virginia. He spoke of the sports he loved and elicited a belly laugh when he bragged about his gold medals. He kept eye contact without a blink, holding the mic high and keeping his head tilted slightly backward so as to keep his line of sight through his glasses onto the people in front of him. Slowly, he gathered our attention in that dark room as we stood with our plastic cups of soda and juice and our tired legs and our frustrated hearts.

  Frank Stephens moves slowly. His eyes glide slowly. His body shifts slowly, deliberately. As I watched him speaking, I could feel a slowness come to my mind, as though my thoughts became quieter, my breathing became quieter, and my attention sharper. “Some pe-pe-people think that I’m … just disabled, that being like me is bad.” His words felt crushing. He went on: “Some pe-pe-people don’t even think we should be here … on Capitol Hill because we don’t co-co-count. Some pe-pe-people don’t even think—”

  Frank stopped. He looked around the room. The pause was so long I almost thought he needed help. He held the audience with his gaze. Then he drew in his breath. “They don’t even think I should li-li-live. That’s why I’m he-he-here.”

  Then his voice rose and he surged ahead. “I’m here to say to all those people that … my life is worth living! My life is worth living! My life is worth living!” There was not a sound in the room. Frank brought the mic a little closer to his mouth. “I love my life and my life is worth living.”

  A few years later, I went to the White House with Frank and a dozen other athletes for a ceremony where President Obama signed a bill removing the words “mental retardation” from U.S. law. It was a triumphant moment for our community. Their voices had been heard and the Congress had acted, and now the president of the United States was signing into law a change that would forever banish the painful taunt—“retarded”—from official language. We were ushered into the East Room and seated while the president took his place. He spoke briefly. “Rosa’s Law,” as it became known, for Rosa Marcellino, who
pushed for legislation, was official.

  When the ceremony was over, I rounded up our gang and we headed for the exit as security officials edged us to the door. I hailed two cabs outside the White House and began to load the first group into one when all of a sudden, I realized Frank was missing.

  I scrambled back to the White House security desk, only to be told that all the guests had departed. I frantically asked the Secret Service to help me find Frank. “He must be in there,” I said. “Frank Stephens is his name and he didn’t come out. He doesn’t have a cell phone. Maybe he’s in the men’s room or somewhere, but he must be inside.”

  “Calm down, sir,” the agent said sternly. “We don’t believe there’s anyone in the house, but we will sweep it again.”

  Twenty minutes later, I saw Frank walking out the side door of the White House, two security guards on either side. He had a huge smile on his face. So did they. I was relieved beyond description. “Frank, where did you go? What happened?”

  He looked at me, with his most mischievous smile and eyes so tender. “Tim. It was so beautiful in there.”

  For me, Frank Stephens is in the category of the great teachers, a master of the journey to living fully alive. Frank loves the life he’s been given and sees beauty all around him. Another such mystic, Saint Catherine of Siena, summed up this way of life: “If you are who you were meant to be, you will set the world ablaze.”

  That’s the final lesson. When you are who you are meant to be, it is so beautiful everywhere. Keep your heart open and you will set the world ablaze.

  Years ago, Loretta gave me her own slogan for setting the world ablaze. She was staying at our house for a few days in between speeches and meetings. After breakfast one morning as I headed to the door to take the children to school and go to work, she turned to Kathleen and Caroline and said, “See you later, Kathleen and Caroline. And don’t forget to storm the castle!”

  I’ve been barking those words to my children every morning every day since. “Storm the castle!” Every time I say it at school dropoff, Caroline, our youngest and the only one of our children who has been a part of Special Olympics since a few days after her birth, always charges away from my car with a roguish smile on her face. She’s a Unified partner with Joelle Packard, a rigorous dancer, and tough enough to take down any castle. I know deep down that she and our other children understand those words. If you are who you are meant to be, if you know deep in your bones that your one precious life is lovely and worth living—then you’ll storm the castles of your life and set the world ablaze.

  And therein lies the challenge from Loretta to us all. There are castles in each of our lives. Some are global struggles for peace and justice that will require great sacrifice and courage. Others are local struggles that need the creativity and attention of citizens who believe. Others are between us, in families and among friends, where wounds linger and pain is passed on and on and where belief and forgiveness and healing are in desperate need. Still others are within us, shadow castles waiting to be stormed with light.

  Loretta reminds us all that healing and welcoming are great adventures and they await each of us. She reminds us to be unafraid of whatever castle stands before us. She reminds us to storm ahead and take on the challenges with belief beyond imagination.

  So wherever you are, and whatever you’re doing, there’s a castle close by that only you can storm. Don’t delay another second. Take aim, be brave, and have fun. All it takes is a willingness to enter the game and believe. Just by playing, you’ll surely win the medal that matters most.

  A Note on Language

  LABEL ME ABLE

  The words we use to describe one another tell a story all their own. We use labels to convey gender, color, religion, political persuasion, geography, tribe, and more.

  In this book, I’ve tried to share the story of many heroes of living fully alive who also happen to have intellectual disabilities. The issue of how society labels them has become central to their struggle to tell an affirming and hope-filled story of their identities, lives, and dreams.

  When I was a child, we often spoke of “the retarded” and thought of the term “mental retardation” as medically and politically accurate and fair. Before my time, “idiot,” “imbecile,” and “moron” were equally acceptable terms to describe people based on their IQs or “mental age” assessments. “Handicapped,” “invalid,” “deviant,” “educable,” “trainable,” and “defective” have all been used at one point or another. In the many languages of the world, comparable terms are still common today. There remain institutes of “defectology,” teachings that children are “exchanges” for past sins, references to people “suffering” from Down syndrome, and rituals of rape and assault against people with intellectual disabilities for the purposes of healing diseases or purging evil spirits.

  In writing this book, I chose multiple words to identify the 250 million or so people in the world who have “intellectual disabilities.” When using historical material, I retained the original language even when that language would be offensive by today’s standards. The history of the words used to describe people is itself instructive about social, religious, political, and cultural attitudes and practices. In reviewing this history, I frequently found myself wishing I could dodge the words or soften the horror that they convey. But they are what they are and I retained them. They are a part—a painful part—of the world we inherit.

  In writing about the present, I chose to use the commonly accepted term “intellectual disabilities.” I say “commonly” because it is not universally accepted. Some prefer to broaden the definition to include “developmental disabilities,” since that term includes populations who have many of the same challenges as people with intellectual disabilities but do not necessarily have intellectual disabilities. Others prefer more colloquial terms such as “intellectual challenges,” which properly emphasizes that we are all less about a diagnosis than about a process of facing our limitations. More than a decade ago, I began using the term “difabilities” to underscore the enormous variation in human abilities and, hopefully, to communicate that differences are universal, broad, and welcome.

  Perhaps most important, wherever possible, I have followed a general consensus among disabilities advocates and those who love, care for, follow, and believe in individuals with intellectual disabilities—use “people first” language. “People first” has a simple message: Whenever labeling an individual or a group, place the label after the word “person” or “people.” Emphasize that whatever the label might be, it is not an identity but just a part of an identity. In this usage, one writes about “people with intellectual disabilities” in order to underscore that the respective “intellectual disability” is only a part of who those individuals are—that they are “people first.” Similarly, one could refer to “people with physical disabilities” or “people who have cancer” to make the same point.

  Even “people first,” however, has its detractors. Recently some advocates have argued powerfully that they want “disabilities” to be a primary descriptor as a way of claiming it without shame or fear. “I am autistic” or “I am gay” are examples of words that describe identity. The debate will continue, I’m sure, and it’s important in countless ways. It has nothing to do with being politically correct and everything to do with respect and dignity. This is but one indication of a movement that is dynamic, changing, and claiming ever new ways of speaking about personhood and society.

  When confronting the challenge of words, people with intellectual disabilities have been their own best advocates—as expected. It was people such as Loretta Claiborne and Mark Swiconik and Eddie Barbanell and Rosa Marcellino who moved the U.S. government and people to abandon the term “mentally retarded” and the slur “retard.” And it was the Australian Special Olympics athlete Gabrielle Clark who brilliantly addressed the issue more than a decade ago. “If you want to know what to label me,” she said in a speech, “label me able!�
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  Someday, Gabrielle’s vision will be a reality. We will look at one another and see ability, gifts, goodness, possibility. Until then, we will struggle to use words that help us both understand our many differences and see beyond them. It is in that spirit that I have chosen the words I use in this book.

  Notes

  The page numbers for the notes that appear in the print version of this title are not in your e-book. Please use the search function on your e-reading device to search for the relevant passages documented or discussed.

  Please note that some of the links referenced in this work are no longer active.

  INTRODUCTION: A SCHOOL OF THE HEART

  “a love so great”: Bernard of Clairvaux, On Loving God: De Diligendo Deo (Point Roberts, Washington: Eremitical Press, 2010), 43.

  “honey sweet teacher”: The phrase is a translation of the title of Pope Pius XII’s 1953 encyclical on Bernard of Clairvaux, Doctor Mellifluus (May 24, 1953), available at www.vatican.va/holy_father/pius_xii/encyclicals/documents/hf_p-xii_enc_24051953_doctor-mellifluus_en.html (accessed August 13, 2014).

  “nearer to you than yourself”: Muhyiddin Ibn ‘Arabi, “Theophany of Perfection,” available at www.beshara.org/principles/selected-reading/ibn-arabi/theophany-of-perfection.html (accessed July 10, 2014).

  “The intellect says”: Rumi, “Thousands of Rose Gardens,” in The Penguin Book of New Age and Holistic Writings, ed. William Bloom (New York: Penguin, 2001); also available at www.williambloom.com/writings/penguin-new-age-intro-63.htm (accessed August 13, 2014).