Martha Undercoffer, an LP, wrote in an e-mail to the Parents of Little People and Dwarfism Yahoo! newsgroups: "I have developed a safe and easy system to use. It is a business card. On the front: 'Yes, I noticed your behavior towards me.' (For some reason the public seems to think we don't notice their treatment of us.) On the back: 'I realize that you probably mean no harm by your actions and/or comments; however they did cause harm and were not appreciated. If you would like to learn more about individuals with dwarfism please visit to think we don't notice their treatment of us.) On the back: 'I realize that you probably mean no harm by your actions and/or comments; however they did cause harm and were not appreciated. If you would like to learn more about individuals with dwarfism please visit http://www.lpaonline.org.'" One LP wrote online, "I've bought myself a little MP3 player and I listen to music so I can't hear what anybody says about me, and I'm sort of in my own little world and I can do what I want." The Internet has been invaluable for LPs. "The current generation of young dwarfs have an ability to interact that would have been my greatest fantasy," one older dwarf told me.

Harry Wieder was among the most vital activists in the dwarf community. He was physically disabled and walked on crutches; he was gay; he was nearly deaf; he was often incontinent; and he was the only child of Holocaust survivors. He could be overbearing and exhausting, and his activism was always tinged with anger, but he was also full of relentless life. At fifty-seven, he was hit by a New York taxi and killed. When I described his litany of challenges, people would make laughing references to Job. Yet, he had decided that his disadvantages would be his crown of honor, and he achieved a wild gallantry in his very openness. I can remember his saying that most gay dwarfs at LPA wouldn't identify themselves because of stigma, but that he didn't believe in the opinions of others. He added, "Gay people are called fairies, and if I'm a fairy and a dwarf, I'm a magical children's story of my own. Where Judy Garland fits in is anyone's guess."

Harry complained that most dwarfs were so set on the politics of inclusion that they refused to acknowledge they were disabled-"and if they won't acknowledge that they're disabled, do you think they're going to acknowledge that they're gay?" Harry had learned from his parents' experience during the war that ignoring your identity did not, in fact, afford you protection. He achieved a great dignity through that belief. At his funeral, his eighty-seven-year-old mother, Charlotte Wieder, was taken aback by the great outpouring of grief, and by the many public figures-including the Speaker of the New York City Council, a state senator, and numerous other dignitaries-who attended. Charlotte told a journalist that she could not take credit for his accomplishments; indeed, she had often tried to contain his excesses-partly out of concern for his health, and partly out of a distaste for all that stigma. "In spite of my very strong feeling to protect him," she said, "I could not hold back his good."

The relentless visibility of dwarfs is amplified by their iconic place in fairy tales as supernatural beings, a burden not shared with any other disability or special-needs group. An essay in the New York Times New York Times has spoken of the "cruel folklore" in which dwarfs are "ugly Rumpelstiltskins." Joan Ablon wrote, "Dwarfs carry with them the historical and cultural baggage of special and even magical status. Persons in the general population thus exhibit great curiosity about dwarfs, stare at them often unbelievingly, and in some cases even try to photograph them in a chance encounter." This strange awe of dwarfs can be as unsettling to them as disparagement; it is, above all, an emphasis on difference. Anne Lamott, a British dwarf, said that she thought about being little about as much as she thought about having teeth-that it was simply part of who she was and not a focus of consciousness. But she had to acknowledge that it was the focus for most other people who met her. has spoken of the "cruel folklore" in which dwarfs are "ugly Rumpelstiltskins." Joan Ablon wrote, "Dwarfs carry with them the historical and cultural baggage of special and even magical status. Persons in the general population thus exhibit great curiosity about dwarfs, stare at them often unbelievingly, and in some cases even try to photograph them in a chance encounter." This strange awe of dwarfs can be as unsettling to them as disparagement; it is, above all, an emphasis on difference. Anne Lamott, a British dwarf, said that she thought about being little about as much as she thought about having teeth-that it was simply part of who she was and not a focus of consciousness. But she had to acknowledge that it was the focus for most other people who met her.

Taylor van Putten has spondylometaphyseal dysplasia, Kozlowski type, a disease that affects slightly fewer than one in a million people. As is characteristic of the condition, he is relatively tall for a dwarf, at four feet six inches, and does not have the distinctive facial structure shared by people with achondroplasia. Taylor was born at twenty-one inches, eight pounds nine ounces-figures that did not suggest dwarfism. Until his second birthday, he was in the 90th percentile for height. Nonetheless, he had a litany of woes. When Taylor's mother, Tracey, would move his legs to change his diapers, he would scream in pain, and when he started to walk at about a year old, he was clearly experiencing intense discomfort. He always wanted to be picked up and carried. "Something just wasn't right," Taylor's father, Carlton, said. But neither endocrinologists nor orthopedists could find anything wrong, until, when Taylor was two and a half, his parents brought him to be evaluated by a geneticist at Stanford University, who referred the family to a dwarfism specialist at UCLA, where Taylor received his first real diagnosis. percentile for height. Nonetheless, he had a litany of woes. When Taylor's mother, Tracey, would move his legs to change his diapers, he would scream in pain, and when he started to walk at about a year old, he was clearly experiencing intense discomfort. He always wanted to be picked up and carried. "Something just wasn't right," Taylor's father, Carlton, said. But neither endocrinologists nor orthopedists could find anything wrong, until, when Taylor was two and a half, his parents brought him to be evaluated by a geneticist at Stanford University, who referred the family to a dwarfism specialist at UCLA, where Taylor received his first real diagnosis.

When I met Taylor at sixteen, he had had four limb-straightening surgeries, he suffered severe back problems, his rib cage was pressing on his lungs, and doctors had recommended that both his hips be replaced. "I've been in casts for a total of forty weeks, so that's almost a year of my life," he said. He described the gradual revelation that he would be in some measure of pain as long as he lived.

Carlton van Putten's mother was one of eleven children in a Cherokee family in North Carolina. Her family chose not to join the reservation and were rejected by the Cherokee people. Because they were a family of color, they were ostracized by the white community. They grew up in a house with a dirt floor, which her mother would disinfect with urine. In college, she met Carlton's father, a black man from the Caribbean. Right after their marriage, Carlton's father took a job in California. As they traveled across the country, many hotels would not allow them to stay in the same room because he was black and she wasn't. "My parents' story prepared me to be father to Taylor," Carlton said. "My mom walks into this hotel, and to the hotel guy, she's white. But in her mind, she's black. Sometimes there's a big discrepancy between how we see ourselves, and how the world sees us." the Caribbean. Right after their marriage, Carlton's father took a job in California. As they traveled across the country, many hotels would not allow them to stay in the same room because he was black and she wasn't. "My parents' story prepared me to be father to Taylor," Carlton said. "My mom walks into this hotel, and to the hotel guy, she's white. But in her mind, she's black. Sometimes there's a big discrepancy between how we see ourselves, and how the world sees us."

When they received Taylor's diagnosis, the van Puttens grappled with how to normalize his life. "We were filling our heads with positive-mental-attitude books," Tracey said. "My main concern was to build his self-esteem. We probably went a little overboard, because he's borderline cocky. Wherever he went, he would make friends that would really look out for him, like bodyguards. I'd imagined him being stuffed into lockers or garbage cans. It never materialized." Taylor laughed when he heard that. "The only time I was put in a locker was when I got paid ten dollars to do it," he said, "and it was worth it."

Carlton's work took them east again, and Taylor attended elementary school in the Boston area. He was, in his own words, "school-famous"; his brother Alex told me, "Taylor was a king." Taylor was strikingly good-looking, and his proportions were not noticeably dwarflike until he was ten or so. "That's when the staring began," he said. "It's the same natural curiosity that makes someone slow down to look at a traffic accident and see if anyone died. Is there any blood? We just have to glance." The van Putten family moved near San Diego just as Taylor was finishing fifth grade. The transition to middle school wasn't so bad, but then, when the family bought a place a few miles away, in Poway, they had to switch school districts again. "That was my angry, socially retarded period," Taylor said. "Everybody's made their friends by seventh grade. I was just, like, 'Why should I even try again again?' That's when I started looking in the mirror and saying, 'I really don't like that. Legs: short, stocky, curved, out of proportion. Everything: arms, hands, toenails.'"

After one of his surgeries, Taylor was prescribed strong painkillers. "I realized that I was getting high and I enjoyed it," he said. "I smoked a lot of weed, took a lot of ecstasy, acid, mushrooms." Tracey was upset but not surprised. "He was angry at us and he decided he was going to punish us," she said.

The spiritual has always been emphasized in Taylor's life; Carlton is a devout Christian who sings in his church every week and has released an album of inspirational music under the name Carlton David. Carlton said, "I believe there's a God. I believe God doesn't make junk. It's unfortunate that Taylor carries such a heavy burden. But I don't believe you are given the heavy burdens unless you can handle them." Taylor explained, "I've been going to church since I was born, still do. In the middle of my angry period, I recognized that I don't fit with Christianity. I don't think there could be any kind of puppet master that could be both a hundred percent love and power and still allow civilizations to rot and fester, and individuals to be born with this kind of pain." Over time, though, his anger began to resolve. "You can't solve what I have, but you can come to accept it. I quit drugs, and after that, in eleventh grade, last year, surrounded by all the coolest people I could ever want, I enrolled in four AP classes." explained, "I've been going to church since I was born, still do. In the middle of my angry period, I recognized that I don't fit with Christianity. I don't think there could be any kind of puppet master that could be both a hundred percent love and power and still allow civilizations to rot and fester, and individuals to be born with this kind of pain." Over time, though, his anger began to resolve. "You can't solve what I have, but you can come to accept it. I quit drugs, and after that, in eleventh grade, last year, surrounded by all the coolest people I could ever want, I enrolled in four AP classes."

Taylor later said that he always managed to get what he really wanted. "But it requires a step or two more than most people need. It's pretty painful physically, most intensely in my legs and ankles. I use weights and swim because I care about being healthy and how I look. Going to hike with friends, my back is breaking, my hips are about to fall off. I have to take a break. 'Taylor, dude, what's up? Let's go.' I'm dying. I don't think most people realize. I have to purposely laugh if somebody makes a midget joke. I don't find it funny, but they're not trying to hurt my feelings, and I'm not going to go on a jihad against Comedy Central. I did the class-clown thing in elementary school, the quiet-in-the-corner thing in middle school, and now I try to balance it. Other people have no idea what it's like to be me. But then, I have no concept of what it's like to be normal."

Taylor used to want to be alone for the rest of his life, but now he wants to find someone. As he reimagines his future, his grandfather is his inspiration. "Look at what he faced and stood up to," Taylor said. "So my enlightenment-I kind of like to think of it as my enlightenment-is that I can have dwarfism be a factor in everything I do, but not hate it, not have it limit more than what it limits."

Dwarfs have created dating sites such as datealittle.com, littlepeople meet.com, lpdate.org, and shortpassions.com. "Much of the dwarf population missed the years the basic ground rules were learned," one LP said. "We're nave. We never leaned over in a movie and gently let a hand fall onto a breast. First, we likely don't have the date. Second, our arms aren't long enough." The challenges may extend beyond those posed by social norms. John Wolin elaborated, "Many of us have trouble coupling. Our limbs may be too short or too rigid to bend around our partner's. Because of the spinal-cord damage many of us suffer, we may have trouble with erections or may find orgasm a guest with a mind of its own." Dwarfs must decide how they feel about being involved with average people (APs) rather than LPs. On the LPA website, one woman complained about the difficulty of not being able to kiss an AP or look into his eyes while they were having sex. Harry Wieder said, "For people of equal height, what is mysterious is the lower body, which you have to reach for-that's what's sexualized. For me, it's the opposite. I look at people below the waist all day every day, and my idea of intimacy is the special occasion of looking someone in the face. The feeling when having sex with APs that I needed to relate to the bottom half of the body, and not relate so much to the top half, was problematic." to kiss an AP or look into his eyes while they were having sex. Harry Wieder said, "For people of equal height, what is mysterious is the lower body, which you have to reach for-that's what's sexualized. For me, it's the opposite. I look at people below the waist all day every day, and my idea of intimacy is the special occasion of looking someone in the face. The feeling when having sex with APs that I needed to relate to the bottom half of the body, and not relate so much to the top half, was problematic."

For many little people, the question of whether to partner with another little person or one of average height is political. Some have contended that dwarfs who marry people of average height fail to accept themselves as dwarfs and reduce the available pool of spouses for LPs who seek similar-size partners. Rates of depression seem to be slightly higher among little people in mixed-height marriages. Although almost all dwarfs in LPA who married used to choose other LPs, an increasing number are marrying APs; and while mixed marriages used to be stigmatized at LPA, they are now much more widely accepted. Outside LPA, however, most dwarfs who marry still marry other dwarfs.

Wolin wrote that before he met his wife, "I feared-and fear fear doesn't really do justice to the brutal emotion I felt-that I would never be married." In researching this chapter, I became friends with the mother of an attractive, short-statured young woman. One day, I suggested that I knew someone who might like to be fixed up with her. The mother, a person of emotional restraint, became tearful. "My daughter is over thirty," she said, "and in all these years, you are the first person who has ever made such a suggestion. My son, who is average, everyone on the planet wanted to introduce him to their daughter or friend. But no one ever thought of my daughter as a sexual being." doesn't really do justice to the brutal emotion I felt-that I would never be married." In researching this chapter, I became friends with the mother of an attractive, short-statured young woman. One day, I suggested that I knew someone who might like to be fixed up with her. The mother, a person of emotional restraint, became tearful. "My daughter is over thirty," she said, "and in all these years, you are the first person who has ever made such a suggestion. My son, who is average, everyone on the planet wanted to introduce him to their daughter or friend. But no one ever thought of my daughter as a sexual being."

Childbearing presents other challenges. The pelvic opening in many short-statured women is not large enough to allow an infant to pass, so virtually all deliveries are performed by cesarean section-which requires anesthesia, a risk for LPs. Carrying a child may be physically stressful to dwarf parents. As part of the overarching theme of dwarfs' having no privacy at all, dwarf parents are frequently interrogated about their procreative and birthing experiences. "As usual, the most bizarre comments come from the adults," one such mother described online. "IS THIS BABY YOURS? This is a question I would never think to ask of anyone with a baby but one I am asked several times a week." Adelson wrote, "For each LP couple that decides to have a child, the decision is an affirmation of their own lives, and a leap of faith about the lives they may expect for their children." Indeed, for this very reason, many little people, some with biological children and some without, adopt dwarf children given up for adoption by their average-size parents. people, some with biological children and some without, adopt dwarf children given up for adoption by their average-size parents.

Yet many average-size parents do not give up such children, even when strongly advised to do so. When Clinton Brown III was born, his father, Clinton Sr., remembered, "I could see right away his arms were straight out, his legs were straight out, and his body was small. I almost fainted." A curtain blocked the view for Clinton's mother, Cheryl, but it did not block her hearing; the baby didn't cry, and none of the doctors or nurses said anything. When Cheryl cried out, "What's wrong?" one of the doctors replied in a hushed voice, "We have a problem here." Although Cheryl wanted to see and hold her baby, he was whisked away. Later, a doctor explained that her son was terribly deformed and likely to die, the result of diastrophic dysplasia. Such profoundly affected children are usually institutionalized, he said, and offered to handle Clinton's placement without her involvement, since it was sometimes easier for parents to give up a child they'd never seen. Cheryl was indignant. "That's my baby," she said. "I want to see my baby." The doctors were vague about prognosis; only a few thousand people in the world were known to have diastrophic dwarfism. "The information they had on it was two paragraphs," Cheryl recalled. "Two paragraphs on what the rest of our lives were going to be."

Clinton was in an incubator when Cheryl finally saw him, and she was allowed only to touch his toe, but when she did, his eyes opened and she saw that they were blue and beautiful. She also saw everything she would come to know as signposts of diastrophic dwarfism: the unjointed hitchhiker thumb that springs from the bottom of the palm, the flat nose, the cauliflower ears, and the cleft palate. He had scoliosis and clubfeet, and his legs were bunched up under him like airplane landing gear. His head was gigantic. "Some kids have a mild version of this, but he had every symptom possible," Cheryl said. "I think of it as the deluxe package." Clinton Sr. said, "We came home without him. I remember pulling into our street, looking at Cheryl, and it was just empty, you know?" Clinton Sr. went back to work as an engineer for a cable TV company, and Cheryl to her job at a call center. Clinton had his first surgery when he was two weeks old to repair an umbilical hernia. When the Browns brought him home a month later, he was so tiny that Clinton Sr. could hold him in one hand.

Once they had him at home, Cheryl tried to treat him as she would have treated any baby. "When I was young, I thought life went on a schedule. You go to high school; you find a job; you get married. When you have a child like Clinton, it's 'What happened to all that stuff I always counted on?'" When Clinton was eleven months old, Cheryl found Steven Kopits. "From that moment on," Cheryl said, "he controlled everything that happened to Clinton. Without him, Clinton wouldn't have walked." Clinton Sr. said, "You went into his office depressed, and you came out enlightened and with new hope." Cheryl said, "They weren't patients to him; they were his children. Nobody else ever comes up to that level. And no one will, because there'll never again be an angel like that on this earth." stuff I always counted on?'" When Clinton was eleven months old, Cheryl found Steven Kopits. "From that moment on," Cheryl said, "he controlled everything that happened to Clinton. Without him, Clinton wouldn't have walked." Clinton Sr. said, "You went into his office depressed, and you came out enlightened and with new hope." Cheryl said, "They weren't patients to him; they were his children. Nobody else ever comes up to that level. And no one will, because there'll never again be an angel like that on this earth."

Kopits was famous for developing long-term surgical programs for his patients; rather than perform a single operation in the unlikely hope of correcting all of a patient's problems, he would perform one that promised to reap benefits down the road and facilitate subsequent operations. In the end, he performed twenty-nine surgeries on Clinton Brown Jr. "I had asked my pediatrician what Clinton was going to look like," Cheryl said. "So he gave me a book on people in the circus. I went to Dr. Kopits. He said, 'Let me tell you something. That's gonna be a handsome young man.'" The long waits in Kopits's waiting room were notorious; a routine visit often became an all-day affair. "No question in my mind I would wait ten hours," Cheryl said. "He would say, 'I'm sorry, I have to see this one.' We knew if our child needed him that he would say the same to another family."

When Clinton was almost three, after six months of constant surgery, Dr. Kopits assigned him to one of his staff physiotherapists, and Clinton began to walk. Kopits worked on Clinton's clubfeet, his tibiae, his fibulae, his knees, his hips. Clinton had eleven back surgeries, cleft palate surgery, surgery to correct an inguinal hernia. He spent six months in a body cast, flat on his back, with a circle of metal with four pins fixed in his skull to immobilize his neck and spine. "I lived in the hospital with him for one month, two months, whatever it took for him to be rehabbed," Cheryl said. The call center where Cheryl worked gave her extra time off. The Browns needed two parental insurance policies for Clinton's surgical program; even then, the uncovered expenses were catastrophic. "You've heard of the Six Million Dollar Man?" Cheryl said to me, pointing at her son. "This is the Million Dollar Dwarf you're talking to."

Since diastrophic dwarfism is a recessive genetic trait, any other child Cheryl and Clinton Sr. might produce would have a one-in-four chance of inheriting it, so they decided not to have more children. "In the beginning, you live in six-month increments," Clinton Sr. said. "With our kind of kid, you don't look long range." Cheryl said, "The hardest thing was going out in public, that first negative comment or stare. I always had it in the back of my head that it should be a learning experience for everybody that encountered Clinton and me. We made it a little joke: 'Okay, look at that one, Mom. They're staring at me!' Then Clinton would just do a nice little wave and smile." Clinton Sr. said, "We were in a store once, and this little kid was hovering. So Clinton, who was twelve, ran around the next aisle and, as the kid came by, jumped in front of him and spooked him. The kid freaked out and broke down crying. I said to Clinton, 'That wasn't the right thing to do.' He says, 'But it felt experience for everybody that encountered Clinton and me. We made it a little joke: 'Okay, look at that one, Mom. They're staring at me!' Then Clinton would just do a nice little wave and smile." Clinton Sr. said, "We were in a store once, and this little kid was hovering. So Clinton, who was twelve, ran around the next aisle and, as the kid came by, jumped in front of him and spooked him. The kid freaked out and broke down crying. I said to Clinton, 'That wasn't the right thing to do.' He says, 'But it felt so so good, Dad.' And I said, 'Yeah, okay. That one's for you.'" good, Dad.' And I said, 'Yeah, okay. That one's for you.'"

Clinton said, "When I was a kid, I was bitter towards the fact that I was little. Angry that I didn't have the same opportunities as everybody else. You either face the war, or you falter. It was everyone else's problem, that they didn't know how to handle it, and it was my problem that I didn't know how to teach them how." Clinton Sr. added, "Once he said, 'If I was average-size, I'd be great, wouldn't I?' He was eleven, in that hospital room. So now I had to leave the room 'cause I was crying, and I felt so helpless. When I came back, he said, 'That's okay, Dad. I have the answer.'"

"I was such a sports fan, and I wanted to be an athlete," Clinton said. "We used to play hockey in the street, but everybody started getting huge, and running me over, so I couldn't play. It's just a big piece of childhood that I missed out on." During the long periods of immobility and surgery, Clinton was homeschooled. It was his primary distraction, and he worked hard. "I figured I had nothing else to do, so I got ahead of my class on most things. I decided to do really well academically, 'cause I just had to be the best at something something." When he graduated, Clinton was accepted at Hofstra-the first member of his family to enroll in college. He decided to major in banking and finance, volunteered to be a peer counselor, and helped run orientation week for new students. "I wish all life was college. I'm in the big, macho fraternity; I'm friends with all the girls on campus. I've dated here and there. I have fun."

With his unjointed fingers, Clinton still needed help buttoning a shirt, but he became increasingly independent in other regards, and he got a driver's license and a specially fitted car. "I remember when he told us he was driving," Clinton Sr. said. "A friend of mine tells me he saw Clinton on the Long Island Expressway! I go, 'You saw Clinton Clinton in a in a van, van, driving on the driving on the LIE LIE?!' So I found his schedule, and I snuck down to school. I didn't want him to know that I was there, so I parked in the back. I'm thinking the teacher's drunk or he's a saint. Because they had a makeshift seat and steering wheel for Clinton. He drove right out. I didn't say a word because-well, I couldn't talk. I was amazed."

"When he first went to Hofstra, he met this group of guys that he's been hanging out with for the last four years," Cheryl said. "They would go out to bars and stuff. I said, 'Well, how do you get on that bar stool?' He goes, 'They lift me up, Ma.' I said to him, 'Your body is three feet tall; your friends are six feet tall. If you drink two beers, that's them drinking four beers.' I was terrified about his drinking and driving. I went past a bar and I saw his car parked there-it's very easy to recognize with all those fittings. I didn't think I could march in there like I wanted, but I left him three messages and sat home by the phone waiting for him to call. So I told this to the mother of a child who had gone to school with Clinton. She said to me, 'You're so lucky that he is at a bar.' I thought, 'Okay, if you'd told me when he was born that my worry would be that he'd go out driving after drinking with his college buddies, I'd have been overjoyed.'" been hanging out with for the last four years," Cheryl said. "They would go out to bars and stuff. I said, 'Well, how do you get on that bar stool?' He goes, 'They lift me up, Ma.' I said to him, 'Your body is three feet tall; your friends are six feet tall. If you drink two beers, that's them drinking four beers.' I was terrified about his drinking and driving. I went past a bar and I saw his car parked there-it's very easy to recognize with all those fittings. I didn't think I could march in there like I wanted, but I left him three messages and sat home by the phone waiting for him to call. So I told this to the mother of a child who had gone to school with Clinton. She said to me, 'You're so lucky that he is at a bar.' I thought, 'Okay, if you'd told me when he was born that my worry would be that he'd go out driving after drinking with his college buddies, I'd have been overjoyed.'"

Clinton has learned to set boundaries with a public that takes his size as a waiver of all social rules. "I used to become really upset," he said. "I would cry. Now I just go right up to the person. My mom's always, 'Be nice, be nice.' But sometimes you can't be nice. I walked by this guy's table, and he goes to his friend, 'Oh, my God, lookit that midget.' I said, 'Don't ever ever do that,' and I knocked his beer into his lap. You can't yell at kids. They don't know any better. So I go up to the parent: 'Listen. Why don't you teach your kid some manners and have some class about you?' And it's no better in classy places." I remembered this conversation when Clinton and I had lunch a year later in a nice restaurant in midtown Manhattan, a place he had chosen near his office. As we walked to our table, every person we passed stopped talking and stared, except a few who looked out of the corners of their eyes. If I had shown up with a ring-tailed lemur or with Madonna, there wouldn't have been more focused attention. It wasn't hostile, but it was certainly not relaxing-and it was completely different from the experience I had, for example, pushing a multiply disabled child down a pier in San Diego. Benign pity can wear thin, but it's still easier than astonished fascination. do that,' and I knocked his beer into his lap. You can't yell at kids. They don't know any better. So I go up to the parent: 'Listen. Why don't you teach your kid some manners and have some class about you?' And it's no better in classy places." I remembered this conversation when Clinton and I had lunch a year later in a nice restaurant in midtown Manhattan, a place he had chosen near his office. As we walked to our table, every person we passed stopped talking and stared, except a few who looked out of the corners of their eyes. If I had shown up with a ring-tailed lemur or with Madonna, there wouldn't have been more focused attention. It wasn't hostile, but it was certainly not relaxing-and it was completely different from the experience I had, for example, pushing a multiply disabled child down a pier in San Diego. Benign pity can wear thin, but it's still easier than astonished fascination.

At eighteen, Clinton found his first summer job in finance; five days a week, he made the solo commute by scooter, train, and subway, an hour and a half each way, to the Manhattan offices of Merrill Lynch. "I want to have everything I can in my arsenal of education. My parents worry about me too much, and my way for them to let that go is for me to be financially and physically independent. I was in the hospital so much, so my parents were my best friends. Now I have no boundaries; I have no inhibitions; I want to do so much."

The great question in Clinton's life is mobility. For longer distances, he rides his scooter. He is in pain whenever he walks any distance-much sooner than Taylor van Putten, for example. "My hips and knees and joints are real bad. There's a lack of cartilage between the bones. The cold makes it worse." Despite this, I was impressed at how gracefully Clinton could swing his body around. He could weave his unbending fingers around the handle of a fork or a knife. "I figured out a lot by myself. I used to pick up pizza or a sandwich and put it on the top of my hand. Writing, I use two fingers. If I could change one thing, I would love to walk like a normal person. But I'm dancing all night; I'm doing everything." In fact, when I first met Clinton at LPA, he was dancing; he stayed long after I'd gone to bed. The next day, he was hobbled with pain but also on cloud nine, and he teased me about being the only person of average height on the dance floor: "You stuck out like a little person." sooner than Taylor van Putten, for example. "My hips and knees and joints are real bad. There's a lack of cartilage between the bones. The cold makes it worse." Despite this, I was impressed at how gracefully Clinton could swing his body around. He could weave his unbending fingers around the handle of a fork or a knife. "I figured out a lot by myself. I used to pick up pizza or a sandwich and put it on the top of my hand. Writing, I use two fingers. If I could change one thing, I would love to walk like a normal person. But I'm dancing all night; I'm doing everything." In fact, when I first met Clinton at LPA, he was dancing; he stayed long after I'd gone to bed. The next day, he was hobbled with pain but also on cloud nine, and he teased me about being the only person of average height on the dance floor: "You stuck out like a little person."

The summer job Clinton had at Merrill Lynch was in their legal department, filling out forms, and he was determined to secure a promotion. After he graduated, he was hired by Mutual of America Capital Management Corporation, where he prepared income statements and reports for technical analysts, obtained real-time stock quotes, and helped brokers identify trends in certain Internet stocks. During his time there, he had a bad experience with inadequate access on the subway. He obtained permission to address the board of the New York Metropolitan Transportation Authority at their next public meeting. Arriving at the midtown conference room, I found a mob of his friends and relatives who had turned out to support him. "I am standing in front of you as a representative of all disabled citizens of New York," Clinton said, poised and confident. "My story is of a violation of the Americans with Disabilities Act, a violation of civil rights, and a blatantly dangerous situation presented to all wheelchair-bound citizens who use the MTA's subways and trains. The purpose of this speech is to illustrate what is going on out there in your transportation system, let you know what it means to the people it is affecting, and drill down to a resolution. I am asking you to be my teammates in a quest for equality, and to work to fix this issue." At breakfast afterward, Cheryl confided in me that she could never, ever have done such a thing.

Cheryl said she thinks often about whether she would have wanted things to go another way. "When he was born, one of the nurses started crying and said, 'Oh, I feel so terrible. Why you? You're such nice people.' I said, 'Why not us?' Would I trade it? I would never trade it now." Clinton Sr. agreed, "I have to work with new, young guys on the job, and when they're lazy or say they can't do certain things, I don't tell 'em it's my son, but I mention that I know someone that it takes half an hour to get dressed in the morning, just to get outside and breathe fresh air. 'You guys have two hands, two arms, and a head. You've got every God-given tool you could have, and you're wasting it.'" He paused. "And you know what? I used to waste it, too. I learned that lesson from Clinton myself." and breathe fresh air. 'You guys have two hands, two arms, and a head. You've got every God-given tool you could have, and you're wasting it.'" He paused. "And you know what? I used to waste it, too. I learned that lesson from Clinton myself."

Both Cheryl and Clinton Sr. are somewhat in awe of their son-his courage, his academic and professional achievements, his big heart. "I don't think we did anything to make him into him," Cheryl said. "What did I do? I loved him. That's all. The other day these people, much higher up than us socially, much more educated, called me up and said they couldn't handle this. They were in Texas politics and thought the stigma would be harmful to them, and they gave their baby up for adoption. That's just what they were going to do, and it's the opposite of what I was going to do right from the beginning. The other day Clinton came home, and he goes, 'Ma, I saw a blind man today with a stick, in Manhattan. There were people rushing back and forth, and he was all alone. I just felt like crying, I felt so sorry for him, so I offered to bring him to where he needed to go.' Clinton just always had that light in him, and we were lucky enough to be the first to see it there."

There are many infrequent kinds of short stature for which genes have yet to be found, but for the primary forms the genes are now located, and many turn out to be closely related. Achondroplasia, for example, is in most cases based on a dominant mutation on fibroblast growth factor receptor 3 (FGFR3). A different mutation of FGFR3 causes hypochondroplasia, a milder form of dwarfism; another mutation in the same spot causes thanatophoric dysplasia, which is a lethal skeletal dysplasia. Because achondroplasia is dominant, if two achondroplastic dwarfs conceive a child, they have a 50 percent chance of having a dwarf child, a 25 percent chance of having a full-height child, and a 25 percent chance of having a double-dominant child; double-dominant children die in infancy. Numerous other skeletal dysplasias lead to death at or shortly after birth. Finding the gene for achondroplasia offered a deeper understanding of the mechanisms of the condition and allowed prenatal diagnosis of double dominants, giving parents the option to terminate pregnancies that were certain to end in tragedy. The process also allows people to select against healthy achondroplastic children.

The gene was identified by John Wasmuth in 1994; since then, genes have been found for SED, pseudoachondroplasia, and diastrophic dwarfism. Wasmuth was concerned about potential uses of his discovery. At the press conference to announce it, he was accompanied by officers of LPA. Leslye Sneider, who was on the podium with Wasmuth that day, recalled that he "understood the implications, and he wanted the world to see us-happy, thriving, well-standing there on the stage with him at the same moment that they learned that news." He opined that the test should be used only to identify double dominants. Because dwarfism is infrequent, it is not screened for in standard genetic testing. It is, however, possible to request a review for achondroplasia, either preimplantation for people using IVF or in amniocentesis or CVS (chorionic villus sampling). In many cases, the condition will be picked up in ultrasound later in the pregnancy. A quarter of respondents in a recent survey would choose abortion if they found out they were expecting a dwarf. Even more strikingly, more than 50 percent of medical professionals surveyed would make that choice. officers of LPA. Leslye Sneider, who was on the podium with Wasmuth that day, recalled that he "understood the implications, and he wanted the world to see us-happy, thriving, well-standing there on the stage with him at the same moment that they learned that news." He opined that the test should be used only to identify double dominants. Because dwarfism is infrequent, it is not screened for in standard genetic testing. It is, however, possible to request a review for achondroplasia, either preimplantation for people using IVF or in amniocentesis or CVS (chorionic villus sampling). In many cases, the condition will be picked up in ultrasound later in the pregnancy. A quarter of respondents in a recent survey would choose abortion if they found out they were expecting a dwarf. Even more strikingly, more than 50 percent of medical professionals surveyed would make that choice.

The question of testing has since been hotly debated among little people, with some couples expressing the desire to screen out average-size fetuses and ensure a dwarf child. Dr. Darshak Sanghavi at the University of Massachusetts supports the right of dwarfs to make this choice, writing, "Many parents share a touching faith that having children similar to them will strengthen family and social bonds." As chairs of the LPA Advocacy Committee, Betty Adelson and Joe Stramondo wrote in a letter to the New York Times New York Times that physicians who refuse such requests "are actively practicing coercive eugenics." One LP couple described going in for preimplantation genetic testing solely with the purpose of avoiding a double dominant, only to be told by multiple clinics that they supported "healthy" pregnancies and would implant only nondwarf embryos. Carol Gibson, who has achondroplasia, as does her husband, said, "You cannot tell me that I cannot have a child who's going to look like me. It's just unbelievably presumptuous." Many little people, worn out by all this, choose to adopt short-statured children, who are routinely rejected by their birth families, especially in the developing world. that physicians who refuse such requests "are actively practicing coercive eugenics." One LP couple described going in for preimplantation genetic testing solely with the purpose of avoiding a double dominant, only to be told by multiple clinics that they supported "healthy" pregnancies and would implant only nondwarf embryos. Carol Gibson, who has achondroplasia, as does her husband, said, "You cannot tell me that I cannot have a child who's going to look like me. It's just unbelievably presumptuous." Many little people, worn out by all this, choose to adopt short-statured children, who are routinely rejected by their birth families, especially in the developing world.

Ginny Foos and her husband have two children with achondroplasia, one biological and one adopted. "My nightmare is that my biological son's going to say to me, 'It's your fault,'" Ginny said. "My husband and I couldn't say that to our parents because it was a fluke for them. But he could very well say, 'You knew the genetics, and you went ahead and made me a dwarf.'" When Ginny and her husband decided to adopt their second dwarf child, it was because, she said, "I think dwarfism shapes the soul as well as the body. There's an immediate bond between two LPs, be it same-sex friends, lifelong partners, or any other variant. When I met my husband, there was something that we had in common that was more than a physical attribute; it was a life experience. My husband grew up in Beirut-during the civil war!-while I grew up in Boston, so our histories are very different. Yet, simply because we're dwarfs, we're similar." My husband grew up in Beirut-during the civil war!-while I grew up in Boston, so our histories are very different. Yet, simply because we're dwarfs, we're similar."

Many dwarfs live full, rich lives, and often dwarfism seems more of an inconvenience than a disability. On the other hand, the medical challenges can be daunting. Observers of trends in prenatal diagnosis have expressed concern that wealthier parents will opt for expensive testing and that poorer ones will be consigned to bring dwarfs into the world, a troubling demographic shift. Achondroplastic disability activist Tom Shakespeare addressed these issues in a BBC radio interview, saying, "I'm ambivalent about impairment. I don't think it's a tragedy-that's the traditional view. But neither do I think that it's irrelevant-which is, in a way, the radical disability view. I think it's a predicament." He identified problems with both seeking and avoiding such pregnancies. The advantage to knowing early that you are going to bear a dwarf is that you can adjust to the idea and either finish the grieving in advance if grief is part of what you feel, or terminate the pregnancy. The advantage to not knowing is that you don't carry the burden of choice, which can be terrifying and overwhelming for expectant parents.

LPA has responded to the issue of genetic testing with a statement that reads in part, "We as short-statured individuals are productive members of society who must inform the world that, though we face challenges, most of them are environmental (as with people with other disabilities), and we value the opportunity to contribute a unique perspective to the diversity of our society. For LPA members there is a common feeling of self-acceptance, pride, community and culture." Ericka Peasley, a dwarf and a genetic counselor who has worked on the LPA position papers, emphasized the hope that genetic information will not be used to eliminate human variety. "Giving families the opportunity to make early decisions about lethal conditions, rather than having to go through an entire pregnancy for a baby that we know is essentially going to die, is great," she said. "But we feel that people with achondroplasia or other viable skeletal dysplasias are able to have healthy, productive lives, and while we don't question anyone's right to terminate a pregnancy, we want to create an awareness that this may not be a good reason to do so." For now, genetic testing is usually employed for diagnosis, allowing families to know what to expect and what to do. A child with Morquio syndrome, for example, will need to be monitored for degeneration of eyesight and hearing; such children sometimes have cervical instabilities, and fusing the upper vertebrae can prevent significant damage to the spinal cord. Some researchers are studying how to turn off the gene that is prematurely activated in achondroplasia and stops bones from growing. Their work would not eliminate the gene, but would alter its activity and could eradicate the phenotype. growing. Their work would not eliminate the gene, but would alter its activity and could eradicate the phenotype.

Writing in the New York Times, New York Times, Virginia Heffernan described dwarfism "as a cherished inheritance-a trait, like deafness, that is simultaneously a stigma, a handicap, a source of pride and a prerequisite for membership in a complex, charismatic and highly exclusive culture." Ericka Peasley said, "I didn't feel when I was growing up that I didn't want to be this way; I just couldn't understand why people needed to see me the way they did, and I kept on being hurt by that. As I've grown older, I've had neck issues that cause me chronic pain. We have information now that life span is decreased for people with achondroplasia. You try to figure out if adding this unique LP perspective to the world outweighs the real and true disability and pain that can go along with having a condition like this. Some of us might say if you take away the surgeries and the pain, but leave the shortness behind, we'd go for that-but it's all or nothing." Virginia Heffernan described dwarfism "as a cherished inheritance-a trait, like deafness, that is simultaneously a stigma, a handicap, a source of pride and a prerequisite for membership in a complex, charismatic and highly exclusive culture." Ericka Peasley said, "I didn't feel when I was growing up that I didn't want to be this way; I just couldn't understand why people needed to see me the way they did, and I kept on being hurt by that. As I've grown older, I've had neck issues that cause me chronic pain. We have information now that life span is decreased for people with achondroplasia. You try to figure out if adding this unique LP perspective to the world outweighs the real and true disability and pain that can go along with having a condition like this. Some of us might say if you take away the surgeries and the pain, but leave the shortness behind, we'd go for that-but it's all or nothing."

Monique Duras, a Frenchwoman living in New York, went with her Russian partner, Oleg Prigov, for a fifth-month sonogram, expecting everything to be fine, and assuming it would take five minutes. "We were waiting to find out if it was a boy or a girl, and we asked what was happening, and they said, 'You'll see in the doctor's report,'" Monique recalled. "When we finally saw the doctor, he mentioned that there was a disproportion between our child's limbs and the size of his head. But it was not a big warning." Monique's obstetrician suggested an additional ultrasound at a specialist lab, where the doctor confirmed that the fetus had a big head, but observed that Oleg, too, had a big head and encouraged them to go enjoy their summer holiday.

By the time they returned, Monique was in her seventh month. Her gynecologist suggested another ultrasound, which was performed by yet another doctor. That doctor referred them to a genetic counselor, who said there was a risk of skeletal dysplasia. "I found it a little bit cold, and too distant, the fact that she used the medical term," Monique said. "I suddenly felt a heavy load of worries on top of me." The genetic counselor said, "The bad news is that there is a problem, and the good news is that we know exactly what it is. Achondroplasia is the most common form of dwarfism, and it has fewer complications than other dwarfing conditions do. But there is a risk of hydrocephalus, cervicomedullary compression, spinal stenosis, restrictive and obstructive lung disease, otitis media, and tibial bowing." Monique almost fainted. "I didn't want to face this," she explained to me. "I was close to eight months at this point. I thought, 'I hate all these studies. I wish we didn't know anything.' I also thought, 'I wish we'd known sooner.' My ob-gyn didn't want to give any kind of advice, which meant she didn't give me any support. She told me to look up Little People of America. That was all she had to say about it." know anything.' I also thought, 'I wish we'd known sooner.' My ob-gyn didn't want to give any kind of advice, which meant she didn't give me any support. She told me to look up Little People of America. That was all she had to say about it."

Monique talked to doctors she knew in France. "They all said that you don't take on problems or issues or differences you can avoid. They all thought that we should abort." The genetic counselor in New York referred them to a psychologist with a background in genetics. "The psychologist was saying that either way, there's always going to be a moment when you regret your decision. That had a very strong negative impact on me. I thought, 'I don't want to make a decision I'm going to regret.' It's very simple and very basic."

Of the possibility of aborting, Oleg said, "For my family, it was out of the question. They converted from Russian Orthodox to Catholicism and they believe deeply. My mother sent me a fax from Moscow asking us to rethink it. But I didn't tell Monique; it was not for my mother to decide this." Monique said, "Oleg doesn't want to know what people are thinking. I like to know everybody's opinion. I go all over the place, and then I choose. But that's the way I do everything. So we finally decided to abort. In France you can abort at any stage of the pregnancy. I needed to be away from New York and closer to my family. They were against my having this child, and I wanted their support."

So Oleg and Monique went to France and visited a clinic in Monique's hometown, Lyon. They secured an appointment with the senior doctor who reviews all the complex prenatal genetic cases for east-central France. "She has vast experience, and the people she sees almost always abort," Monique said. "We sat down and started to speak to her, and this assistant comes in with all the paperwork to start the process. I thought, 'What am I doing here?' I was shaking. The doctor said, 'If you don't want to do it, don't do it.' I was terrified. Oleg said, 'If you keep this baby, it's going to be okay.' I needed to go to the point of almost doing it, to just see what I wanted to do. And suddenly it was clear that I would have this baby." Monique told me this story with tears running down her face, and at the end of it she began to smile. "It was suddenly very clear," she repeated.

Monique and Oleg headed home to New York. "Then it was a race against time to learn everything we could about achondroplasia." They met with Lisa Hedley, who was a friend of a friend, and her daughter, Rose. "Now that we were going into it deliberately, it wasn't frightening, even when we learned difficult things about the orthopedics and other complications," Monique said. "The psychologist was wrong; I never regretted it. I wished I didn't have the choice at that time. But now I'm so happy that I did-that it was my positive decision to have this baby, not just something that happened to me." now I'm so happy that I did-that it was my positive decision to have this baby, not just something that happened to me."

When I first met Monique and Oleg, Anatole was four. "We wanted to give Anatole a brother or a sister who is dwarf as well," she said. "We can't do that; his condition is happenstance. Somehow, we have to ensure that he doesn't feel alone, like the strange one. We'll organize some interaction with LPA, and if there's a connection, we'll continue." Monique is an ardent patriot for French medicine, but equally so for an American social environment. She and Oleg take Anatole to Michael Ain, the dwarf orthopedist at Johns Hopkins. "I think it's good for Anatole to see him as a role model," Monique said. She also likes that Ain's patients are almost exclusively little people, and that he is well versed in the surgeries they might require. She seeks opportunities for Anatole to mix with both disabled and nondisabled peers.

"I'm into cultivating difference," Monique said. "So that's what I will communicate to him. 'Okay, you're different. How can you benefit from that?' I'm starting to love Anatole's proportions, the way he's very compact. He said, 'I want to be tall and strong, like Spider-Man.' I said, 'Anatole, you're not going to be tall like Spider-Man and Mommy and Daddy. But you can be very strong and very small.' He said, 'I don't want to be different!' I thought, 'Okay, so now it begins.'" In much of Europe, valued identities are still collective and conforming: Catholic, French, white. Difference is avoided as much as possible; it's striking that limb-lengthening has been particularly popular in southern Europe. "I was looking at the literature from an excellent school, and they mention at the end, 'We welcome children with disabilities,'" Monique said. "You'd never see that in a French school. New York is definitely the best place to live and now is the best time, too. I wouldn't want to be dealing with this in my grandparents' generation."

Monique's relationship with family in France has remained layered. "Aesthetics are so much more important there," Monique said. "My mother still thinks in terms of 'poor Anatole,' and I know she loves him, but my whole life is so strange to her. She respects my choices, but she cannot understand them, and so the family I've created has pulled me away from the one that created me."

I talked with Anatole about life as an LP a few years later, when he was almost seven. By that time, he had a younger brother who had just grown taller than him. I wondered whether he was having a hard time with that. He thought about it, then said, "No-I'm glad he'll be able to reach things for me." But he showed me with considerable pride that he had the upper bunk in the room they shared and explained how much further ahead he was at school. "Anatole figures out how to do things, and he's pretty independent," Monique said. "The kids are more nice than you would think, though there is teasing." She laughed. "But he's a nice person, and, you see, he brings out niceness in other people, so maybe his life won't be too hard after all." things, and he's pretty independent," Monique said. "The kids are more nice than you would think, though there is teasing." She laughed. "But he's a nice person, and, you see, he brings out niceness in other people, so maybe his life won't be too hard after all."

For dwarfs, function follows form. The shape of their bodies determines their physical capabilities. Dwarfs decry two issues: the problem of how they look to other people, and the problem of how the world is not set up for people of their dimensions. Nowhere are the two more confused than in the debate around extended limb-lengthening, or ELL. Treatment commences at the growth-spurt age, usually around eight or nine. The child is sedated, and metal screws are inserted into the lower leg bones at one-and-a-half-inch intervals, so that they stick out through the flesh of the leg. Each leg is then broken in about ten places. Because there is no longer a functional bone in the lower leg, a large brace is affixed to the outside of the leg and attached to the projecting screws. In a month or so, the bone begins to heal-the fragments, in effect, reaching toward one another. When they are nearly connected, the brace is adjusted to pull them apart again and stretch out the leg, maintaining the breaks in the bone. This is repeated regularly for about two years, with the bone kept perpetually broken, perpetually healing, the ligaments and muscles and nerves all constantly stretched. When the lower legs have fully healed, the process is repeated on the lower arms, then the upper legs, then the upper arms. Limb-lengthening surgery means spending the end of childhood and most of adolescence in considerable pain, the fiber of the body shattered. It means spending those years with enormous metal braces covering your body and metal screws projecting from your arms and legs. But it does work. It can add fourteen inches to a person's height-making the difference between being three foot eleven and being five foot one, which can be the difference between being seen as freakish and being seen as normal. The intervention runs between $80,000 and $130,000.

ELL is both a cosmetic and a functional intervention, though many who have chosen it avoid discussing the cosmetic piece. Skeptics contend that ELL is complicated, painful, and has many troubling side effects, and that the procedure is unwarranted given that little people can function quite well in society without it. Like those who militate against cochlear implants, ELL opponents object to the surgery's stigmatizing implication that their condition needs to be corrected.

It is often arduous to distinguish the political position from the medical one. People who have had ELL tend to speak well of it, and studies show that the procedure boosts self-esteem. "Looking up all the time is hard," one LP who had had ELL explained. "Not just hard on the neck, but hard on the spirit." The response has an aura of the self-fulfilling prophecy about it. People who have opted for the procedure presumably needed a boost in self-esteem before they began and would find it difficult to belittle a process to which they had devoted many years of life. Nonetheless, people who have experienced complications are among the procedure's most vehement opponents. the neck, but hard on the spirit." The response has an aura of the self-fulfilling prophecy about it. People who have opted for the procedure presumably needed a boost in self-esteem before they began and would find it difficult to belittle a process to which they had devoted many years of life. Nonetheless, people who have experienced complications are among the procedure's most vehement opponents.

The tension around this issue within LPA was reified in its decision to invite Dror Paley, the leading surgeon for ELL in the United States, to the 2002 national convention, and then to uninvite him when members objected. Gillian Mueller, who underwent limb-lengthening as a child and who has become an outspoken proponent for it, has said, "The most important thing any new parent can do is accept their child and teach him to accept himself. No child should grow up believing he has a condition that his parents are going to 'fix' when he's older." However, she states that the procedure can help people to live without the disadvantages of short stature. She is thrilled that she had it. One LPA executive has said, "We need to wait to an age where you can have a real discussion with the individual who's going to have it done, and have it really, truly be their decision. We'd recommend that they meet with a psychologist, that there be a very open and extended dialogue about it before a decision is reached." But like the arguments for delaying cochlear implants, this one is deeply flawed. This process works only during the time of natural growth: late childhood and early adolescence. It's later than the period of language acquisition, but much earlier than full maturity.

Some doctors have claimed that limb-lengthening may help to prevent the spinal and other orthopedic problems associated with dwarfism, and this is a topic of urgent debate. Dan Kennedy, who has not pursued ELL for his daughter, candidly writes, "A dwarf gains considerable benefit from limb lengthening simply because his upper arms are made longer. 'What is the most important thing you can think of other than being able to wipe yourself?'" Every case of ELL is different, so the risks and rewards cannot be generalized, and because ELL is fairly new, the long-term outcome is unclear. The rate of complications-ranging from mild and transient to severe and permanent-is higher for ELL than for any other orthopedic surgery. The target population for the procedure faces many orthopedic problems even without surgery, which further muddies the swampy waters.

Some children seem to move easily toward a celebration of their difference. For others, difference is almost insufferable. Likewise, some parents can tolerate having a child who is different, and some can't. At nine, I'd have given anything not to be gay and would have gone through a procedure like this had there been one for my condition; now that I'm forty-eight, I'm glad that I didn't compromise my body. The trick is knowing which prejudices of a nine-year-old are nine-year-old prejudices that will change with time, and which ones are true readings of the heart that will last into adulthood. The attitude of parents frequently shapes the mind-set of children, and surgeons must try to penetrate that film so they can clearly see the interests of the person on whom such a procedure would be performed. "My daughter hated being a dwarf," one mother said to me. "She would point to the dwarfs we introduced into the house, lovely people, and say, 'I'd rather be dead than be like those people. Those people are freaks. I hate them.' She didn't want to be a part of their world. We tried so hard to make it nice for her." The daughter insisted on and is glad to have had the procedure. Writing about elective surgery on children, medical ethicist Arthur Frank observes in the through a procedure like this had there been one for my condition; now that I'm forty-eight, I'm glad that I didn't compromise my body. The trick is knowing which prejudices of a nine-year-old are nine-year-old prejudices that will change with time, and which ones are true readings of the heart that will last into adulthood. The attitude of parents frequently shapes the mind-set of children, and surgeons must try to penetrate that film so they can clearly see the interests of the person on whom such a procedure would be performed. "My daughter hated being a dwarf," one mother said to me. "She would point to the dwarfs we introduced into the house, lovely people, and say, 'I'd rather be dead than be like those people. Those people are freaks. I hate them.' She didn't want to be a part of their world. We tried so hard to make it nice for her." The daughter insisted on and is glad to have had the procedure. Writing about elective surgery on children, medical ethicist Arthur Frank observes in the Hastings Center Report, Hastings Center Report, "The possibility of fixing renders inescapable the question of whether or not to fix." "The possibility of fixing renders inescapable the question of whether or not to fix."

Surgery originated as a process of excision; the augmentative model of surgery is a modern intervention. Though descriptions of orthopedic procedures date back to ancient Greece, the use of such procedures in a recognizable way came from the eighteenth-century French physician Nicholas Andry. Michel Foucault famously used an image from Andry's Orthopaedia: or, the Art of Correcting and Preventing Deformities in Children Orthopaedia: or, the Art of Correcting and Preventing Deformities in Children (1743) to open his own (1743) to open his own Discipline and Punish, Discipline and Punish, where it was intended as a model of persecution. The image shows, simply, a bent tree tied to a straight stake. Foucault would have regarded ELL as a form of torture brought about by a society that insists on conformity. Yet, while it may be a high calling to make the world more welcoming of dwarfs, it is easier in any given case to make dwarfs fit the world. The question is whether dwarfs who accommodate the world facilitate the continuance of social injustice, whether there is a moral imperative for them to refuse such procedures to keep the pressure on for the world to accommodate other dwarfs. This may be a great deal to demand of an LP who is trying to live a life of some personal satisfaction. where it was intended as a model of persecution. The image shows, simply, a bent tree tied to a straight stake. Foucault would have regarded ELL as a form of torture brought about by a society that insists on conformity. Yet, while it may be a high calling to make the world more welcoming of dwarfs, it is easier in any given case to make dwarfs fit the world. The question is whether dwarfs who accommodate the world facilitate the continuance of social injustice, whether there is a moral imperative for them to refuse such procedures to keep the pressure on for the world to accommodate other dwarfs. This may be a great deal to demand of an LP who is trying to live a life of some personal satisfaction.

While human growth hormone (HGH) does not confer greater height on people with skeletal dysplasias, its use has long been approved for people with pituitary dwarfism. In recent years, HGH has increasingly been used aesthetically for young people in the general population who are not tall and wish to be so, or whose parents seek to protect them from the social disadvantages of shortness. Like ELL, such hormone therapy must be undertaken during the growth years, usually in the early teens. Whether it is effective in people with adequately functioning pituitary systems is debatable, but some studies indicate that it can add up to four inches of additional height. The FDA recently approved Humatrope for "unexplained shortness"-that is, for men with a final height under five foot three and for women with a final height of under four foot eleven. Of course, it is impossible to know what someone's final height will be until he reaches it, at which point it's too late for Humatrope, so this whole process is based on statistics and guesswork. The cost of treating people with Humatrope through those critical growth years is between $12,000 and $40,000. Some wealthy parents have sought HGH for children of average height because they believe that making their children really tall is a favor to them. it can add up to four inches of additional height. The FDA recently approved Humatrope for "unexplained shortness"-that is, for men with a final height under five foot three and for women with a final height of under four foot eleven. Of course, it is impossible to know what someone's final height will be until he reaches it, at which point it's too late for Humatrope, so this whole process is based on statistics and guesswork. The cost of treating people with Humatrope through those critical growth years is between $12,000 and $40,000. Some wealthy parents have sought HGH for children of average height because they believe that making their children really tall is a favor to them.

The advantages of height have been broadly established. Tall people garner more votes in elections, and recent studies show that men over six feet earn on average a salary 12 percent higher than shorter men. Tall people are icons of beauty in films, in advertisements, and on fashion runways. Proportionality has been praised as the essence of beauty since ancient times. Vitruvius, writing in the time of Christ, said that the Greek sculptors had understood this perfectly and had expressed a universal ideal: "For the human body is so designed by nature that the face, from the chin to the top of the forehead and the lowest roots of the hair, is a tenth part of the whole height," he begins, proposing a very undwarflike body type. Our language is full of praising expressions such as stand tall and proud, stand tall and proud, and of disparaging terms such as and of disparaging terms such as fall short of, comes up short, paltry, fall short of, comes up short, paltry, and and puny puny. The use of dwarf dwarf as a verb-a disparaging one in most instances-does not help matters. William Safire once wrote in the as a verb-a disparaging one in most instances-does not help matters. William Safire once wrote in the New York Times New York Times of how Pluto had been reclassified as "a new category called dwarf planet, and all textbooks in all languages are ordered to refer to it with that adjectival derogation." The journalist John Richardson, who has investigated the lives of LPs, wrote, "Dwarfs will never assimilate. As long as movie stars have full lips and oval faces, as long as women dream of 'tall, dark, and handsome,' dwarfs are the difference that stays different." of how Pluto had been reclassified as "a new category called dwarf planet, and all textbooks in all languages are ordered to refer to it with that adjectival derogation." The journalist John Richardson, who has investigated the lives of LPs, wrote, "Dwarfs will never assimilate. As long as movie stars have full lips and oval faces, as long as women dream of 'tall, dark, and handsome,' dwarfs are the difference that stays different."

Kiki Peck was born with Kniest dysplasia, a random mutation that leads to a rare variant of dwarfism characterized by lack of type II collagen, which occurs in cartilage and in the clear gel that fills the eyeball. It results not only in diminutive stature, but also in enlarged joints, a flat nose, severe myopia, hearing loss, and distortions of all other areas of the body where cartilage plays an important role. Kiki has "Swiss cheese cartilage," which results in arthritis-like symptoms and joint stiffness, a barrel-shaped trunk, large hands and wide feet, hips described by one of her doctors as "like melting ice," and bones that are unnaturally thin, with ends that are unnaturally wide. Her illness was not observed at birth, but when her mother, Crissy Trapani, brought her to the doctor for her one-month visit, she had lost weight. The doctor told Crissy to stop breast-feeding and use bottles so she could keep a rigorous account of Kiki's feeding habits. The weeks that followed were frightening; Kiki was diagnosed with "failure to thrive," and her life hung in the balance. She was taken to the University of Michigan Hospital, within driving distance of the Pecks' house, and even though none of her doctors had ever seen a case of Kniest-at the time, there were only two hundred known cases worldwide-they arrived at a correct diagnosis from X-ray images of her unusually shaped bones. birth, but when her mother, Crissy Trapani, brought her to the doctor for her one-month visit, she had lost weight. The doctor told Crissy to stop breast-feeding and use bottles so she could keep a rigorous account of Kiki's feeding habits. The weeks that followed were frightening; Kiki was diagnosed with "failure to thrive," and her life hung in the balance. She was taken to the University of Michigan Hospital, within driving distance of the Pecks' house, and even though none of her doctors had ever seen a case of Kniest-at the time, there were only two hundred known cases worldwide-they arrived at a correct diagnosis from X-ray images of her unusually shaped bones.

The months that followed were occupied with visits to geneticists and other specialists. "I just wanted to talk to somebody who knew what it would be like for her," Crissy said. "There was nobody." Kiki was found to be severely myopic and was fitted for spectacles at two months. "I went to four different places to find glasses that would fit her tiny face," Crissy recalled. "The woman was adjusting the glasses and Kiki was screaming, screaming, screaming. All of a sudden she stopped and she just stared. You could tell from the look on her face that she was like, 'I can see!'" Because cartilage is a part of the inner structure of the ear, Kiki also had significant hearing deficits, and she was fitted for hearing aids at six months. "That was a whole other adventure," Crissy said. "Try keeping hearing aids on a six-month-old. We lost a lot, and they're not cheap things to lose." By that time, however, Kiki had started to grow, and while she didn't grow as much as an unaffected child, she was keeping pace for her condition.

Crissy's parents had been upset by the diagnosis. "When I told my dad, my mom said he went right out to the golfing range and just slammed a whole basketful of balls. Then he came inside and started researching, and he found a Kniest group in Minnesota." The whole family flew out to meet them. "I remember preparing myself for the shock of meeting an adult who was affected," Crissy said. "Then I met her. She was a great person, super-friendly and super-accommodating, with all kinds of answers. So it was really good for me and my parents."

Building a life was extremely challenging, and Crissy found an outlet in poetry; the form entails control and was a good one to pursue in a powerless situation. "We didn't know if Kiki would survive," Crissy said. "We didn't know what kind of surgeries she might need. We didn't know what would happen to her spine; disks are cartilage. She didn't begin to walk until she was two, and even when she was just learning to stand up, she'd look arthritic, like she's eighty." Crissy said people with Kniest are also sure of themselves and strong-willed. "And quite intelligent," she added, "perhaps because they have had to do problem-solving since day one. Even in preschool, Kiki's teachers said that she always knows what she wants, and she's always had a great self-image." do problem-solving since day one. Even in preschool, Kiki's teachers said that she always knows what she wants, and she's always had a great self-image."

When I met Kiki, she was in fifth grade, almost eleven. She had crutches next to her in the living room where we sat to talk and had recently been fitted with a brace to keep her back straight. Crissy and I were in jeans, but Kiki was wearing a party dress and big boots for our meeting; something in her was incorrigibly festive. "When I wake up, I'm stiff," she said. "I can't make a fist, and when I go to school, my fingers aren't ready to write yet." She uses a tricycle to get around the building. She announced to me that she was planning to be a veterinarian and a rock star when she grew up. Crissy said, "I'm sure she will one day, if that's what she really wants to do." Kiki had asked for a pet Chihuahua because she thought they could be little together. Money being tight, she got a hamster.

While I was at the house, Kiki and her older brother, Josh, had an argument because Kiki had kicked something and it had hit Josh. "I needed to move it," she said. "Why couldn't you just lean over and do it?" he asked. Kiki said, "I don't want to, because then it would be hard to get up." Josh was righteously indignant, but Kiki had a faraway look I have come to recognize in disabled children who don't know to what extent they are exploiting their difference for their own benefit. "Sometimes my brother thinks I have too much attention, and I try to tell him that it's not my fault," she said. "Yeah, it is," Josh said. "Sometimes, we actually say we hate each other," Kiki said to me pointedly. She paused and crossed her arms, then said very definitively, "And the truth is that we really love each other."

Crissy divorced Kiki's father, Caleb, when Kiki was in second grade. "Her father thought that she needed less medical care than I thought she needed," Crissy said. "When she had her surgeries, Caleb didn't come to the hospital; I think he was scared. For the last ten years, I've been just barely above water, gasping for air. All my vacation time was spent at University of Michigan Hospital." Crissy described the relentless rounds: the orthopedist four to six times a year, the ophthalmologist one or two times a year, the audiologist and otolaryngologist each two times a year at least, the rheumatologist regularly. Kiki has constant physical therapy, and Crissy does stretching exercises with her daily. "So many decisions," Crissy said. "She's in pain and replacing her hips might help, but if we replace them too soon, that could disrupt other growth, so when do we want to do it? Because it's so rare, there isn't much information, and that's the worst part, really." Crissy sighed. "I used to run marathons, and someone told me once that if you smile the whole way, you won't feel the pain. It worked. So that's what I do with this, too." the whole way, you won't feel the pain. It worked. So that's what I do with this, too."

Mothering Kiki has been nearly revelatory for Crissy. "I grew up painfully shy. I was a teenager who worried about whether I was a few pounds overweight, or if my hair and makeup were right. Then when she came into my life, it was just like, 'How can I say I have to be a certain way, when I know she'll never be that certain way?' Why was I ever obsessed about that? Even when we've had our tantrums and I'm at the edge, I realize her strength. I was always really shy and self-conscious about the way I looked or I didn't feel so good about myself. Here I have this child who is the epitome of self-esteem under the most extreme circumstances. It's just a source of wonder to me." Crissy later wrote, "I think of the word brave, brave, how I have to say it as a mantra, one syllable, one beat. She is more how I have to say it as a mantra, one syllable, one beat. She is more brave brave than I." than I."

A few years after Crissy and Caleb divorced, and a few months after Kiki had major leg surgery, Crissy was diagnosed with breast cancer, requiring surgery, chemotherapy, and radiation. "There was a point where Kiki and I were joking with each other about who goes to see doctors more," Crissy said. "Having had Kiki for so long made the cancer easier. Because I'm like, 'This is just another thing to deal with and overcome. Just keep moving.' I didn't hide it from the kids. Josh was more frightened by it. Kiki was just head-on, like she's always been. Her response was 'My mom is always taking me to the doctor and now I'm taking my mom.' When I went through my lumpectomy and I was lying on the couch recovering, she put a wet towel on my head and cut up oranges and fed them to me."

When Kiki learned that her mother needed to shave her head before starting chemo, she offered to do it for her. When they were finished, Kiki announced that she would shave her own head, too. Crissy tried to stop her, but she was absolutely adamant. "My mom got so involved with my surgery," she said. "I hope it didn't give her cancer. Since I've spent so much time feeling different, I know how hard it is. So I wanted my mother to have someone else and not be different all by herself."

IV

Down Syndrome

Anyone involved in any way with disability has come across "Welcome to Holland," a modern fable written by Emily Perl Kingsley in 1987. In fact, any such person has come across it repeatedly: several hundred people have forwarded it to me since I started writing this book. Google shows more than five thousand postings of it, in connection with everything from leukemia to cranial abnormalities. Dear Abby runs it every October. It is standard issue from doctors to parents of disabled newborns. It has been set to music as a folk song and as a cantata. It serves as a theme for conferences and has been published in one of the Chicken Soup for the Soul Chicken Soup for the Soul books. People have even named their disabled children after it: Holland Abigail, for example. It is as iconic to disability as "How do I love thee?" is to romance. Many told me that it gave them the hope and strength to be good parents; others told me that it was too rosy and set up false expectations; and yet others said that it didn't adequately acknowledge the special joy of special-needs children. Here is the piece in its entirety: books. People have even named their disabled children after it: Holland Abigail, for example. It is as iconic to disability as "How do I love thee?" is to romance. Many told me that it gave them the hope and strength to be good parents; others told me that it was too rosy and set up false expectations; and yet others said that it didn't adequately acknowledge the special joy of special-needs children. Here is the piece in its entirety: I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this....When you're going to have a baby, it's like planning a fabulous vacation trip-to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Colosseum. The Michelangelo David David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place.So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.But...if you spend the rest of your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

Seven to eight million Americans have intellectual disabilities; one out of ten American families is directly affected by mental retardation. Down syndrome, the result of a triplication of the twenty-first chromosome, is the most common form of intellectual disability, occurring in about one of every eight hundred births in the United States, for a total American population of more than four hundred thousand people. Far more such pregnancies are created; more than 40 percent of fetuses with DS miscarry or are stillborn. In addition to mental retardation, Down syndrome may entail heart defects (occurring in about 40 percent of cases), loose joints, thyroid disorders, a malformed digestive tract, leukemia, early-onset Alzheimer's symptoms (in at least a quarter of cases, a far higher proportion for those who live past sixty), celiac disease, shortness, obesity, hearing and vision problems, infertility, immune deficiencies, epilepsy, a small mouth, and a protruding tongue. Poor muscle tone affects the development of mobility, coordination, and, because of low tone in the mouth, speech. None of these features, except for slowed mental development, occurs in all cases of DS. People with DS also show unusually low rates of most cancers and are not subject to hardening of the arteries. People with DS have smaller brains, with reductions in most areas and fewer neurons in the cortex. They also have reduced synaptic density, and delay of myelination, the developmental process through which nerves are sheathed. They are at increased risk for depression, psychosis, disruptive-behavior disorders, anxiety, and autism. Down syndrome appears to have existed in all human populations across the span of human history; it has been found in chimpanzees and gorillas, as well. not subject to hardening of the arteries. People with DS have smaller brains, with reductions in most areas and fewer neurons in the cortex. They also have reduced synaptic density, and delay of myelination, the developmental process through which nerves are sheathed. They are at increased risk for depression, psychosis, disruptive-behavior disorders, anxiety, and autism. Down syndrome appears to have existed in all human populations across the span of human history; it has been found in chimpanzees and gorillas, as well.

The original and most reliable form of prenatal testing for DS is amniocentesis. The physician uses a needle to withdraw an ounce or so of amniotic fluid, in which some fetal cells are adrift; these cells are then analyzed for various conditions. Some people wish to avoid amnio because it carries a risk of miscarriage and because it seems intrusive for the fetus. CVS can be performed earlier than amnio but carries a greater risk of miscarriage. The "triple screen," done in the second trimester, tests the mother's blood for proteins and hormones associated with DS. Introduced in 1988, it identifies about two-thirds to three-quarters of cases. A quadruple screening, which looks for another hormone, brings this success rate up to four-fifths.

Ultrasound has been used to look for birth defects since the 1970s, and as imaging technologies and our ability to interpret the scans become more sophisticated, this is an increasingly reliable way to diagnose DS. Early in pregnancy, about the same time as CVS, an ultrasound test, nuchal translucency, measures the fluid behind the fetus's neck, which is increased in DS and other anomalies. Later in pregnancy, 3-D ultrasound can provide more precise information. New noninvasive blood tests may replace these techniques if they prove similarly accurate; one detects placental messenger RNA in the mother's bloodstream, and another measures bloodstream fragments of chromosome 21. No technique can establish the severity of prospective impairments, mental or physical.

At the time Emily Perl Kingsley and her husband, Charles, were expecting, they decided to forgo amniocentesis because the risk of injuring the fetus seemed too great. "And if I had had amnio," Emily said, "I would have terminated, and I would have missed out on what has been not only the most difficult but also the most enriching experience of my life." Jason Kingsley was born in 1974, in Westchester County, north of New York City. The doctor told Charles that such a child belonged in an institution and discouraged the Kingsleys from seeing the baby. He said that "this mongoloid" would never learn to speak, think, walk, or talk. Emily was kept tranquilized and given pills to stop lactation, on the assumption that she would not take the baby home. "They said he'd never be able to distinguish us from other adults," Emily recalled. "He would never be creative; he would never have an imagination. I was collecting a first edition of Lewis Carroll and putting aside all this Gilbert and Sullivan stuff that I love; I had boxes of things that I was going to do with this kid, all of it sophisticated and terrific. I turn on the television. All of a sudden, there's nobody who looks like me. Everybody is so perfect! I had vanished. I cried for five days nonstop." lactation, on the assumption that she would not take the baby home. "They said he'd never be able to distinguish us from other adults," Emily recalled. "He would never be creative; he would never have an imagination. I was collecting a first edition of Lewis Carroll and putting aside all this Gilbert and Sullivan stuff that I love; I had boxes of things that I was going to do with this kid, all of it sophisticated and terrific. I turn on the television. All of a sudden, there's nobody who looks like me. Everybody is so perfect! I had vanished. I cried for five days nonstop."

This was soon after the expose of horrific conditions at Willowbrook, and Emily and Charles couldn't bear the idea of institutionalization. But it was also a moment in the 1970s when nurture arguments held ascendancy; people sought to bring about their children's remission from various grave conditions through insight and lavish kindness. A social worker at the hospital where Jason was born mentioned that a new, experimental program called early intervention early intervention might help kids with DS to learn some basic skills. "We had to give it a try," Emily said. "If it turned out to be heartbreaking and miserable, we could institutionalize him based on our own experience, not on hearsay." So Emily and Charles brought Jason home, and when he was ten days old, they went to the Mental Retardation Institute. "I stood in the parking lot, with my ten-day-old baby in my arms, and I couldn't make my feet walk through a door that had that name on it," Emily recalled. "I was paralyzed. Charles pulled up in his car, saw me there, grabbed me by the elbow, and dragged me into the building." might help kids with DS to learn some basic skills. "We had to give it a try," Emily said. "If it turned out to be heartbreaking and miserable, we could institutionalize him based on our own experience, not on hearsay." So Emily and Charles brought Jason home, and when he was ten days old, they went to the Mental Retardation Institute. "I stood in the parking lot, with my ten-day-old baby in my arms, and I couldn't make my feet walk through a door that had that name on it," Emily recalled. "I was paralyzed. Charles pulled up in his car, saw me there, grabbed me by the elbow, and dragged me into the building."

The doctor at the institute said almost the opposite of what they had been told in the birthing room: that they had to start with stimulation of every kind, especially engagement of Jason's senses, because no one knew what might be possible for a child who received enough positive input. Charles and Emily ripped apart the elegant, pastel baby's room they had created, painting it blinding red with stenciled green and purple flowers. Emily persuaded the local supermarket to give her the giant lacy snowflakes they had used as Christmas decorations, and those went up, too. They hung things from the ceiling on springs, so they were always moving and bobbing. "You could get nauseated just walking in there," Emily said. They put in a radio and a record player so there was music all the time. They talked to Jason day and night. They moved his limbs through stretches and exercises to improve his muscle tone. For six months, Emily would cry herself to sleep. "I almost drowned him in the tears I shed over him," she recalled. "I had this fantasy, that I would develop a very fine tweezers and go in and pick out every extra chromosome of every cell in his body."

One day when he was four months old, Emily was saying, "See the flower?" for the eight hundredth time, and Jason reached out and pointed to the flower. "He could have been stretching," she said. "But I experienced it as him saying, 'O-kay, Mom, I Mom, I got got it.' It was a message to me: 'I am not a lump of mashed potatoes. I am a person.'" Emily called Charles immediately. "He's in there!" she cheered. The phase that followed was almost ecstatic. Emily and Charles tried to come up with novel experiences for Jason almost daily. Emily sewed a quilt that had a different fabric every few inches-terry cloth, velvet, AstroTurf-so that every time Jason moved he would experience a new sensation. When he was six months old, they took a giant roasting pan and filled it with Jell-O, forty packages' worth, and lowered him into it so he could writhe around and experience the strange texture, and eat some of it, too. They used brushes on the soles of his feet to make his toes curl up. He learned better than Emily and Charles could have hoped. Though his speech had the blurred cadences typical of people with intellectual disability, he was able to communicate with it. Emily taught him the alphabet. He picked up numbers; he learned words in Spanish from watching it.' It was a message to me: 'I am not a lump of mashed potatoes. I am a person.'" Emily called Charles immediately. "He's in there!" she cheered. The phase that followed was almost ecstatic. Emily and Charles tried to come up with novel experiences for Jason almost daily. Emily sewed a quilt that had a different fabric every few inches-terry cloth, velvet, AstroTurf-so that every time Jason moved he would experience a new sensation. When he was six months old, they took a giant roasting pan and filled it with Jell-O, forty packages' worth, and lowered him into it so he could writhe around and experience the strange texture, and eat some of it, too. They used brushes on the soles of his feet to make his toes curl up. He learned better than Emily and Charles could have hoped. Though his speech had the blurred cadences typical of people with intellectual disability, he was able to communicate with it. Emily taught him the alphabet. He picked up numbers; he learned words in Spanish from watching Sesame Street, Sesame Street, where Emily had been a writer since 1970. where Emily had been a writer since 1970.

Jason started reading at four, ahead of many typical peers, and one day put together alphabet blocks to spell a headline: "Son of Sam." At six, he had a fourth-grade reading level and could do basic math. The Kingsleys started counseling families who had just had babies with Down's. "It became a passionate crusade, that other people shouldn't be told that their kid had no potential. We would meet them in the first twenty-four hours and say, 'You're going to have to work harder. But don't let anybody tell you that it's impossible.'" By the time Jason was seven, he could count to ten in twelve languages. He had learned Sign as well as English and soon could tell Bach from Mozart from Stravinsky. Emily took Jason on the road; they addressed obstetricians, nurses, and psychologists, as well as parents of children with Down syndrome. The year Jason was seven, they gave 104 lectures. Emily felt that she had licked DS; she lived in triumph.

Emily arranged for Jason to appear as a regular guest on Sesame Street, Sesame Street, and he normalized tolerance for a new generation, playing with other children in a way that acknowledged but did not stigmatize his condition. She wrote a screenplay based on their experience and insisted that the producers cast children with Down syndrome, even though actors with DS had never before been on TV. Jason provided the voice for the character modeled on him. Jane Pauley did a special about Jason and a friend who also had Down syndrome and had received early intervention. The two boys eventually wrote a book, and he normalized tolerance for a new generation, playing with other children in a way that acknowledged but did not stigmatize his condition. She wrote a screenplay based on their experience and insisted that the producers cast children with Down syndrome, even though actors with DS had never before been on TV. Jason provided the voice for the character modeled on him. Jane Pauley did a special about Jason and a friend who also had Down syndrome and had received early intervention. The two boys eventually wrote a book, Count Us In, Count Us In, in which Jason described the obstetrician who told his parents that he would never learn to recognize them or talk. "Give a baby with a disability a chance to grow a full life, to experience a half-full glass instead of a half-empty glass," he wrote. "Think of your abilities, not your disability." Jason became the first DS celebrity; his renown marked the emergence of Down syndrome as a horizontal identity. Thirty years later, Emily received a special award from the US Department of Health and Human Services for her work showing people with disabilities in mainstream media. in which Jason described the obstetrician who told his parents that he would never learn to recognize them or talk. "Give a baby with a disability a chance to grow a full life, to experience a half-full glass instead of a half-empty glass," he wrote. "Think of your abilities, not your disability." Jason became the first DS celebrity; his renown marked the emergence of Down syndrome as a horizontal identity. Thirty years later, Emily received a special award from the US Department of Health and Human Services for her work showing people with disabilities in mainstream media.

Emily had been told her child was subhuman. When this proved untrue, it was logical to question every traditional assumption about DS, and Jason broke records and stymied expectations. Yet while he could learn more than anyone else with Down syndrome had ever learned, he had limitations. Nuance eluded him. He could read better than he could understand what he was reading. "I knew I couldn't remove the chromosomes," Emily said. "But I really thought that maybe nobody knew what these kids were capable of. No one had been able to do what he did. Then around the time he turned eight, the rest of the world caught up and went past, and I began to realize all the things he couldn't do and would never be able to do. All the trained-seal stuff was fantastic, but in the real world, the intelligence to count in many languages is not as important as social intelligence, and he didn't have it. I had not made the Down syndrome go away."

Jason would hug strangers and didn't understand that they weren't friends. He wanted to attend sleepaway camp, but after he'd been there a week, Emily got a call saying that the other kids didn't like him and didn't like how he kept hugging everyone. Some parents had said that if Jason didn't leave, they were going to pull their own kids. When he played soccer, he would forget or not understand which team he was on. The typical kids who had been his friends began to snigger. He continued to play with toys for small children, and he watched cartoons beamed at kids half his age. It seemed that the miracle was unraveling; he could be a TV star and a successful author, but he could not function in mundane settings. "It was an unbelievably horrible readjustment for me," Emily said. Jason, too, was in anguish. One night when Emily was tucking him into bed, he said, "I hate this face. Can you find a store where we can get me a new face, a normal face?" Another night he said, "I'm so sick and tired of this Down syndrome business. When is it going to go away?" Emily could only kiss him on the head and tell him to go to sleep.

Emily began to rework her lectures. She still wanted to encourage people not to institutionalize their children. She wanted to say that she loved her son and that he loved her. But she didn't want to sugarcoat her message. It was at this time that she wrote "Welcome to Holland." Bringing Jason up wasn't the hell she had been told about when he was born, but it was also not Italy. Jason had become famous for breaking the mold, and it was hard to figure out whether to keep dragging him to greater heights or to let him stay where he was comfortable being-whether he'd have a happier life with more achievement or whether that achievement was only a vanity project. loved her son and that he loved her. But she didn't want to sugarcoat her message. It was at this time that she wrote "Welcome to Holland." Bringing Jason up wasn't the hell she had been told about when he was born, but it was also not Italy. Jason had become famous for breaking the mold, and it was hard to figure out whether to keep dragging him to greater heights or to let him stay where he was comfortable being-whether he'd have a happier life with more achievement or whether that achievement was only a vanity project.

As Jason reached adolescence, his classmates began having parties, but he wasn't invited and spent Saturday nights at home, watching TV and moping. Emily called other parents of teenagers with Down syndrome, asking, "Is your kid as lonely on Saturday night as mine is?" So when Jason was fourteen, the Kingsleys began to host a monthly party at their home, with food, soda, and dancing. "They felt so normal," Emily said. "They loved it." The parents would sit upstairs and talk about their shared experiences, so it was really two parties. When I met Emily, the monthly parties had been going for fifteen years. She had bought a karaoke machine and the kids-many no longer really kids-were having a rollicking good time. "I always say to people, 'Invest in inclusion, but keep one foot firmly planted in the Down syndrome community,'" Emily said. "'This is where your kid's ultimate friendships are going to come from.'"

Jason had been in a special-needs classroom, but nonetheless passed the exams requisite for a high school diploma. Emily located a post-high-school program in Amenia, New York, where young people with learning disabilities, most without other challenges, were taught money management, time management, cooking, and housekeeping in addition to clerical and other job-related skills. Jason's credentials and test scores were way ahead of those of most of the other applicants. "The parents freaked out when they saw that Jason was applying to this school," Emily said. "They thought it was going to turn into a 'retard school.' So I went to the school president. 'What's the criterion for entering this school? Is it the shape of your eyes? Is it how cute you are? If so, let's go down the hall, and I'll show you a few kids you ought to expel.'" Only after Emily threatened a lawsuit was Jason finally admitted; he was later judged by the administration to be a "model student."