My grandparents must have experienced the painful tension between wanting to fight for their child and wishing she would go away to be cared for elsewhere, out of sight, the weaknesses and embarrassing flaws hidden from view. At times, Rosemary must have felt desperately alone. At other times, she must have felt the warmth of the family who sheltered her, although her siblings undoubtedly struggled with how to make sense of the world from the point of view of their sister. They grew up loving someone whom others referred to as having something “wrong.”
Finally, at the age of twenty-three, Rosemary Kennedy underwent experimental brain surgery—a lobotomy—in an effort to correct the emotional and cognitive vulnerabilities that appeared to be growing worse. It was a disaster. The procedure left her with only the most limited verbal and motor abilities. She would spend the remaining six decades of her life in the custody of nuns and caregivers in a Wisconsin institution. By most accounts, my grandfather never saw her again—ending what had been a lifetime of affection. For more than two decades, her mother and siblings visited her rarely. In most ways, she was simply gone.
By the time I arrived, however—almost twenty years after the lobotomy—Aunt Rosemary had become a frequent visitor to our home. She would stay for a few days or a week and spend her days shuffling cards, swimming, taking walks, or visiting sites in Washington. Only when I was older could I see the vexing predicament into which she thrust us. We were a family who lived as though winning and gaining influence were indispensable to our happiness. How then could we explain why Rosemary’s life was of value, too?
In her own way, she may have had the most influence of any member of my family, because her message was by far the most radical: she was the only person I ever met who didn’t need to do anything to prove that she mattered. In the midst of an enormously competitive family system, Rosemary Kennedy lived a full life to the age of eighty-six without ever giving a speech, writing a book, holding a job, or garnering the praise of the mighty. Despite failing to meet any of the expectations that were imposed on the rest of us, she belonged. She didn’t have to do anything to earn that. Only in retrospect did I realize how, at some level, I envied her deeply. Her presence changed everything.
In any event, she was surely the catalyst for what took place in my backyard starting in the summer of 1962. There, my mother started a revolution and named it Camp Shriver. She was determined to prove to others a lesson Rosemary had proved to her years before, a lesson that remains shocking in its simplicity and shocking in its continuing and persistent disregard: people with intellectual disabilities are human beings, deserving of love, opportunity, and acceptance just as they are.
In the years before Camp Shriver, my mother had spent much of her professional energy touring facilities for people with intellectual disabilities, meeting with scholars and researchers, giving small grants to therapists and support agencies, and listening to parents and family members. That experience had led her to the point of fury and frustration, because the suffering of the people she met was so extreme, and so little was being done. Some combination of pain, outrage, and enthusiasm galvanized her to act. In 1962, she decided that the oppressed and forgotten children with intellectual disabilities who were grinding out their summers in the fetid institutions of Washington, DC, and suburban Maryland ought to be able to play games and have fun. And she further decided that since no one else seemed to care much, she would make it happen herself, in her backyard, with her children in tow. That’s where I came in.
What I remember of Camp Shriver spans a child’s emotional range: I went to the arts and crafts center at the camp, where along with other campers I built and painted my own wooden table and gave it to my father. I did the ropes course with other campers and walked the balance beams, hung from trees, and jumped through obstacles. I went with the other campers down to the riding ring and rode small ponies. And I wandered on summer afternoons through an array of games and activities that made my backyard into a virtual amusement park. My mother watched all this and noted shrewdly:
Should anyone be afraid of Wendell, a nine-year-old boy with the mental ability of a boy of four? He and Timothy, my own three-year-old son, did many things at our day camp at the same speed and proficiency and loved each other. Both picked up their clothes—with some prodding—after swimming; both caught and threw a ball with the same ability, although Wendell kicked much better than Timothy. Both had the same table manners. Sometimes they would throw the food and would then have to go without dessert. Both ran about the same speed and rushed back and forth. Wendell and Timmy would hold hands and run down the hill together. Wendell would help Timmy climb up the hill when he was tired.
Camp Shriver was a bonanza of fun, complete with games, balls, swimming, and a friend named Wendell.
But it was also curious, in ways I can now see quite clearly. It must have occurred to me that it was anything but ordinary to have a hundred or so people with intellectual disabilities in one’s backyard. Volunteers seemed to arrive at all hours of the day and evening, asking what to do. A vigorous, authoritarian former Olympic athlete, Sandy Eiler, was brought on to help manage the activities, but he, like others, had only the most limited sense of a plan. Prisoners on work release showed up regularly, tasked with some of the heavy labor involved in constructing games and moving equipment. Only occasionally did a camper’s emotional outburst or unrestrained behavior concern me. At the center of it all was my mother—excited, charismatic, demanding, completely immersed, and always on edge. At the time, Camp Shriver certainly didn’t seem to fall into the category of “revolutionary,” but though few noticed it, the revolution was on. For my mother, it was activism wrapped up with sports, faith, and social justice—her way of attacking the pain and rejection that had marred Rosemary’s life and hers. She was a camp director on a mission, and somewhere within her was Rosemary—a sister calling out for a chance.
During Camp Shriver, my child’s eye took in scenes that have stayed with me for decades. I remember some summer mornings being alone in my bedroom, peering out the window as the campers would arrive and assemble for the raising of the American flag, listening for the trumpeter who would play the national anthem, and for the singing of “If You’re Happy and You Know It.” I watched as volunteers helped guide campers from the school buses to the flagpole, where they lined up in disorderly rows as the flag ascended the pole and the trumpet played its lonely ode to the nation. Then the clapping and singing began. “If you’re happy and you know it, CLAP YOUR HANDS!”
I think I wondered many things as I watched the scene from my second-floor room. I was maybe four or five years old when I can first remember staring out my window as though it happened often; as though it happened yesterday. How do you become “happy” and how do you know it? What are “expectations” and whose should I meet? What matters most—becoming a senator or a president or playing outside with a child with intellectual disabilities in the pool? And who were these children with intellectual disabilities and why was it so important to help them be happy?
I think on some level I realized, even then, that my life was going to be about that scene. I was silent as I watched, my eyes fixed and wide, racing but motionless; my little mind searching the scene in front of me, pleading with it for clues for where I belonged.
All children have their share of moments in which time seems to stop and the full emotional and spiritual complexity of the world comes rushing through their eyes into their bones, there to stay for a lifetime. Flannery O’Connor once wrote that “anyone who has survived his childhood has enough information about life to last him the rest of his days,” and in the daily experience of Camp Shriver, I could see the questions of my life. I wanted to recapture my mother’s attention and escape to the woods and the wonderful delight of imaginary boats and speedy races and happy games. I wanted to figure out how to face the chaos and grief of our restless home while enjoying the excitement and lure of action and purpose that was right in front of my eye
s. I wanted to explore the peculiar riddle of how we so often reject the very people and things that carry the secrets of belonging, and figure out what it would take to find my place. Later on, I wanted to learn how to pray, so that it would all make sense—how to kneel and grind out in silence my experience of the brokenness of the world, so that I could stand and defeat it in time and space.
Camp Shriver was a work of faith and fury made manifest in the most ordinary of tasks: we swam, we rode, we ran, we jumped. Some children came to our house, children whom most people thought of as worthless, and they got the chance to win at a few simple games. That was all. I played alongside them all those years, with only the faintest notion of the role they would later play in my life. Someday, I would realize how close those campers lived to the most important questions that I hungered to understand. And I would realize that they might just have shown me the most unlikely way to fulfill those great expectations my grandmother had instilled in me.
It would take me twenty years to come to understand that the biggest beneficiary of my attempt to make a difference for others would be me. And, even more remarkably, I would learn along the way that the most powerful role models in my search would not be the mighty and beautiful whom I had been raised to try to outdo, but instead the vulnerable and the forgotten on the edge of life whom I had been raised to help.
THREE
Pity or Purge
The route to belonging for people such as the children at Camp Shriver and my aunt Rosemary was not easy. In fact, it was brutal. The inability to do certain things turns out to be very dangerous and leads more often to rejection and humiliation than to belonging. I had no idea as a child how difficult it had been for them to live with the risk of being vulnerable—and no idea that I would need to learn to do the same.
The campers at Camp Shriver—those children and young adults with intellectual disabilities who got off the school buses every morning during the summers at my house—were part of a worldwide population of people with intellectual disabilities whose lives and histories were shrouded in secrecy. My memories inlcude being puzzled by their unusual qualities. Why did one girl make such loud and unintelligible noises? Why did one boy wear a helmet all around the fields? Why was it so hard to understand some campers when they tried to speak? What secret places did they come from and to what secret places were they going as they rumbled in and rumbled away in their big yellow buses in the afternoon? What I knew of their lives barely hinted at struggles of a magnitude I could not imagine. To me, they seemed playful and needy in some ways—happy and a little vulnerable. It would be years before I understood that their vulnerability resulted in most of them having to endure a living hell.
Though few know the history of people with intellectual disabilities, it stands out as one of the most sordid accounts of injustice in human experience. From place to place, century to century, people with intellectual disabilities have been dehumanized, marginalized, abused, rejected, and killed, their families left to despair alone, struggling with the specter of shame and ridicule.
Sadly, the deepest beliefs and values of the societies in which people with intellectual disabilities live have often been employed to justify their rejection. Start with the sacred texts of the Bible, for example, where the conundrum of disability emerges as a frequent topic. While I come from the Christian tradition and only know it personally, believers in other traditions have shared with me their own perspectives on the complexity—and sometimes confusion—that often comes from religious ideas.
Throughout the Bible, the writers try to understand what message God is sending in and through people with disabilities, and although no one knows for sure what the texts mean, many believers have interpreted the readings to suggest that disability is the result of punishment by God or evidence of sin. In sections of the Torah, when God gets angry and visits a long list of misfortunes on Israel—blindness, madness, and physical infirmity (for example, see Deuteronomy 28:15–68 and Zephaniah 1:17)—readers have sometimes seen a “strong negative association with disability as an unfortunate and undesirable state.” In the Christian texts, the stories similarly have led believers to assume that disability was often evidence of sin or shame, as Jesus sometimes appears to “heal” those with disabilities of their sin and cast out “demons” from them, too. In one story, Jesus heals a “demon-possessed man who was blind and mute,” and in another, he heals an apparently epileptic child by rebuking an “evil spirit.” These and other texts have been thought to invite a kind of purging of people with disabilities—an exclusion of them from the midst of the community and an association of disability with suffering and an assumption that disability is undesirable or sinful.
But an alternate view emerges in these same books: disability sometimes appears to be a call to compassion, a reminder of God’s demand that people show mercy and generosity, and even a means of understanding the mind of God. In the Torah, readers find a biblical commandment sometimes cited as the earliest effort to legislate protection of people with disabilities: “Thou shall not curse the deaf nor put a stumbling block before the blind nor make the blind to wander out of the path” (Leviticus 19:14). The prophet Isaiah extolls the virtues of those who offer care and healing to those with disabilities and labels them “repairers of the breach.” Like his Jewish forbears, Jesus of Nazareth often willingly associates with the marginalized and invites them into the Kingdom. Outcasts become disciples, children are considered wise, and the “last” become “first.” The blind man Bartimaeus has sometimes been a symbol of the pleas of people with disabilities. When Jesus comes near to him, the story goes, he cries out in a loud voice: “Jesus, son of David, have pity on me” (Mark 10:47). The crowds rebuke him for shouting, but he persists—an early and powerful example of self-advocacy. Finally Jesus hears him and announces that his faith is strong enough to cure him.
Other major religions repeat these same themes, albeit with different points of emphasis. The Qur’an, which Muslims believe to be the direct revelation of God, contains messages that many believers view as exhortations to include and accommodate people with disabilities: “There is no harm if the blind, the lame, the sick, or you yourselves, eat in your own houses” (Surah 24:61). Tellingly, in one Qur’an passage, God rebukes the prophet Muhammad for turning his back on a blind man who had interrupted a gathering in which he was speaking (Surah 80:1–10), appearing to reinforce the message that God wants people with disabilities to be treated with dignity and respect. However, as in the other Abrahamic faiths, Muslims have sometimes been confused by the ambiguous language of their sacred text. Surah 16:76 describes what appears to be a man who is mute and/or has an intellectual disability as “mute, lacks the ability to do anything, is totally dependent on his master … he cannot produce anything good.” Although most interpretations argue that “mute” is here used metaphorically to indicate a person who strays from the path of God, some readers find that this verse makes it unclear what disability means. The Hadith—the sayings of the prophet Muhammad—is generally positive about people with disabilities, but nonetheless includes sayings such as “one should run away from the leper as one runs away from the lion.”
The Hindu tradition has a comparable mixture of messages, sometimes calling for deferential treatment of people who are sick or who have disabilities, granting them full social inclusion, charitable treatment, and legal immunity. However, the law of karma can be interpreted to counter the call to pity and care with a purge message, linking intellectual and physical disability to misdeeds in a past life, implicitly devaluing or even blaming those with disabilities. Buddhism teaches that its Eightfold Path—Right View, Right Intention, Right Speech, Right Action, Right Livelihood, Right Effort, Right Mindfulness, and Right Concentration—is the way to the cessation of suffering. While many of these tenets emphasize interdependence and selfless kindness, Right Mindfulness and Right Concentration also place a premium on mental discipline and sustained mental control. Such capacities were somet
imes seen to be beyond the reach of many with intellectual disabilities, leading some followers of this tradition to conclude that spiritual peace is not attainable.
There is of course more complexity in these religions—and in the many others not cited—than one can glean from just a cursory glance, but still, it is beyond doubt that religion has sometimes “been used to demean or diminish the full humanity of people with disabilities.” One might be tempted to hope that among cultures that prize reason, the superstitious qualities of religion would yield to humanistic respect for dignity and individual rights, but history shows that secular and rationalistic societies have been just as hard on people with disabilities. The Greeks shaped their grand vision of politics, justice, and virtue—a vision that still shapes the modern world—without according any value to such people, arguing instead for the need to purge society of their presence. There are many accounts of ancient Greek and Roman societies using people with disabilities as ritual scapegoats and sometimes murdering them to appease the gods. Greeks practiced infanticide on newborns with disabilities, and Spartan law required it.
Plato offered a stark prescription for the treatment of those with disabilities: “This is the kind of medical provision you should legislate in your state. You should provide treatment for those of your citizens whose physical constitution is good. As for the others, it will be best to leave the unhealthy to die, and to put to death those whose psychological condition is incurably corrupt. That seems to be the best thing both for the individual sufferer and for society.” Aristotle similarly advocated killing infants with disabilities: “Let there be a law that no deformed child shall live.”
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