Far From the Tree
Until I attended my first dwarf convention—the 2003 Little People of America (LPA) meeting in Danvers, Massachusetts—I had no clue how many kinds of dwarfism there are, nor how many varieties of appearance are collected under the category. Dwarfism is a low-incidence condition, usually occurring because of a random genetic mutation. Since most dwarfs are born to average-height parents, they do not have vertical community. There has been occasional talk about building a town for little people (LPs); there are metropolises where activist LPs have settled; there are high concentrations of otherwise rare dwarfing conditions among the Amish; but there has never been a significant geographic concentration of people of short stature. This means that the national LPA gatherings are not simply occasions to attend lectures and consult medical experts; for some participants, they are the annual exception to a certain kind of loneliness. The gatherings are emotionally intense; one dwarf I met told me she was “happy for one week a year,” although others emphasized that they love both of their lives—the one in the larger world, and the one among their LPA friends. More than 10 percent of Americans of short stature belong to LPA, and the organization has a role in the LP community that is greater than that of similar groups for comparable populations.
Arriving at the Sheraton Ferncroft Resort, where the convention was taking place, I was struck by how the concentration of LPs changed my perception of them. Instead of seeing, primarily, short stature, I saw that one was exceptionally beautiful, that one was unusually short even for a dwarf, that one laughed uproariously and often, that one had an especially intelligent face—and so I began to recognize how generically I had responded to little people until then. I understood what a relief it had to be for them that no one was focused on their height. Of course, the LPA convention was all about stature, but it was also the place where stature became blessedly irrelevant.
It would be difficult for an outsider to acknowledge this particularizing view of, for example, Latinos or Muslims. To say that a person’s ethnicity or religion had overwhelmed, even temporarily, one’s ability to appreciate his other personal characteristics would seem bigoted. But dwarfism has been the exception to these social rules. According to Betty Adelson, author of The Lives of Dwarfs and Dwarfism, “The only permissible prejudice in PC America is against dwarfs.” Mary D’Alton, chair of Columbia University’s Department of Obstetrics and Gynecology and a leader in the field of high-risk pregnancy, told me that dwarfism is the most difficult diagnosis to communicate to expectant parents. “You say that the baby has a hole in his heart,” she said, “and they say, ‘But you can fix that, right?’ But when I tell someone that they will be having a dwarf, they often seem disgusted by the idea.”
Many of the attendees I met my first day at LPA could identify instantly conditions that I had never heard of or imagined and had certainly never seen. When I went down to the conference disco the first night, I saw a brother and sister who had primordial dwarfism; they were full-grown, perfectly proportioned, and only about twenty-nine inches high. Their parents stood with them to make sure they weren’t trampled—a danger even at the dwarf convention. I learned that the girl played percussion in her high school band; she had a classmate who pushed her tiny wheelchair, and she held the drum in her lap—looking, in the words of a dwarf who was herself just three foot eight, “like a marionette.” The conference featured athletic competitions; a marathon-length talent show, including acts from Christian music to break dancing; and a fashion show, which revealed a broad range of dressy and casual styles, all tailored to little bodies. The conference also provided an eagerly awaited opportunity for dating. A dwarf comedian cracked, “You know you’re a teenager at LPA if you’ve had more boyfriends this week than you’ve had in the last year.”
• • •
When I met Mary Boggs on my second day at LPA, she told me that the organization had changed her life. When her daughter Sam was born in 1988, the obstetrician initially assumed that the baby’s diminutive size was a result of her premature arrival. A month later, while she was still in the neonatal intensive care unit, he diagnosed her with achondroplasia. “We would have rather had a child that was deaf or blind,” Mary told me. “Just anything besides a dwarf would have been better. When you’re thinking about what could go wrong with a pregnancy, this doesn’t cross your mind. We were thinking, ‘Why did we have another child at all?’”
Sam came home to her parents’ house in the suburbs of Washington, DC, on oxygen and a monitor. After six months, when Sam was declared physically healthy, Mary took her to her first local LPA meeting. When Sam was a year and a half old, she had a shunt inserted in her head to relieve her hydrocephalus (the accumulation of cerebrospinal fluid in the head); fortunately, she did not have the skeletal problems that in later life afflict so many people with achondroplasia. Mary and her husband got step stools and put them all over the house; they purchased light-switch extenders; they moved the faucet on the kitchen sink. These adjustments at home were easier to control than the challenges outside. “We’ve had people chase us down the grocery aisle to ask questions,” Mary said. “We learned to stare back. It frightens them off. I’d watch Sam not playing with the other kids because she’s too small to do what they do. You just feel sad.”
Before Sam set off for kindergarten, her parents told her that other kids would call her names; they reviewed what some of those names might be and taught her appropriate responses. Mary went to the school and explained Sam’s special needs, giving the teacher a book about dwarfs that she could read aloud to the class. The school lowered the sink and water fountain and installed a grab bar so Sam could pull herself up on the toilet. The kids in her class learned her story, but each year it was new to an incoming kindergarten class, and some would call her names. So Sam decided to make a presentation to each incoming class. She would explain, “I’m little, but I’m eight years old. I’m in third grade. I’m a dwarf, and I’m just like you all, but just short.” She did that every year through elementary school, and the teasing stopped.
When Sam was five, the Boggs family attended their first national LPA convention. “We walked in and saw a thousand dwarfs,” Mary said. “Sam was in shock. I thought my other daughter, who is average height, was going to cry. It took two or three days for us to take it in.” Over the years that followed, the Boggs family persuaded extended family and friends to come to meetings, so that they would know dwarfs other than Sam. “The grandparents could see adult dwarfs and realize, ‘Okay, this is what Sam’s going to look like,’” Mary said. She considered for a minute. “We went for Sam, but also so we could be comfortable with her. To make it easier for us to love her right.”
Middle school was more difficult than elementary school. “People who had been friends for years were suddenly not wanting to hang out with her anymore,” Mary said. “She was not called to go roller skating or go to the movies on Friday night. They pretended that it wasn’t because she was a dwarf. But she knew.” The athletics department gave her a varsity letter for being manager of the track team; she participated in student council and was elected treasurer of her class. Despite this, she was down to a couple of friends. “She’s a little lonely,” Mary said. “She’d have crushes on the boys at school, but eventually realized that average-size guys were not interested in going out with her. It was a big turning point when she started looking more at the hot guys at LPA.”
When I met Sam, she was in the throes of her first romance. She was fifteen going on sixteen, attractive and strikingly mature, and, at three feet nine inches, fairly short for a teenager with achondroplasia. Mary was optimistic about the future. “I would prefer for her to have an LP boyfriend or LP husband,” she said to me. “I think it’ll be easier for her. It’s kind of neat. I mean, you have a dwarf child. But it doesn’t just stop there; it goes on forever. We’re going to have, probably, a dwarf son-in-law, and dwarf grandchildren. What used to be an average-size family then becomes, when we’re gone, a dwarf family! And to think, if I’d known about this early in my pregnancy, I might have terminated.”
• • •
Writing in 1754, William Hay, a dwarf and the first notable memoirist of disability, described visiting a general: “I never was more humbled, than when I walked with him among his tall Men, made still taller by their Caps. I seemed to my self a Worm and no Man: and could not but inwardly grieve, that when I had the same Inclination to the Service of my Country and Prince, I wanted their Strength to perform it.” This feeling of inadequacy salted with the wish to transcend it has been a common narrative among dwarfs, but in the long pause between Hay’s dignified early account and the modern literature on the experience of being an LP, a grossness of prejudice has often quelled that dignity.
Woody Allen once quipped that dwarf is one of the four funniest words in the English language. To be in your very essence perceived as comical is a significant burden. When I described the other categories included in this book, my listeners were hushed by the seriousness of the enterprise; at the mention of dwarfs, friends burst into laughter. I would describe, for example, the time during a convention when a miscreant dwarf had made a bomb threat at 8:00 a.m., so that all hotel guests, most recovering from a night of intense partying, had to evacuate the building. People found hilarity in the mere idea of some five hundred sleepy dwarfs, many of them hungover, standing in the hotel’s forecourt. This had some resonance for me; I know that not so long ago, people might have found the idea of five hundred sleepy homosexuals similarly hilarious. But homosexuality can be hidden, and being among gay people is not a visual gag. Passersby who might avert their eyes tactfully from wheelchair users stare at dwarfs. A sighted woman who marries a blind man inspires admiration; an average-size woman who marries a dwarf inspires suspicion that she has a fetish. Dwarfs still appear in freak shows; in dwarf-tossing competitions; and in pornography, where a whole subgenre featuring dwarf sex exploits an objectifying voyeurism. This is testimony to a callousness beyond that shown to almost any other disabled group. Barbara Spiegel, now director of community outreach at LPA, described how her grandmother said, “You’re a beautiful girl, but no one’s going to marry you. You need to be able to do everything because you’re going to be alone.” Barbara’s stepmother complained about having to be seen on the street with her.
More than 80 percent of people with skeletal dysplasias—the primary dwarfing conditions, the most common among which is achondroplasia, resulting in shortened limbs, a large head, and an average trunk—are born to average parents with no history of dwarfism in their families, either because of de novo mutations or because both parents carry a recessive gene. Other forms of dwarfism include pituitary dwarfism, based on lack of human growth hormone, and psychosocial dwarfism, caused by severe physical abuse.
Parents are still dealing with a legacy of blame assigned to mothers. From medieval times into the eighteenth century, “monstrous births” were said to indicate the unfulfilled desires of lascivious women, whose obscene longings supposedly produced deformity. This theory, called Imaginationism, was hotly debated for hundreds of years. The Princeton historian Marie-Hélène Huet describes how “in the nineteenth century, discoveries in the fields of embryology and heredity provided scientists with new ways of explaining resemblances. But if the mother’s imagination was no longer perceived by the medical field to be a factor in resemblances, its role as the shaper of progeny was never totally forgotten.” John Mulliken, a pediatric surgeon, writes that every parent wants to know what he or she did to cause the situation. “In most cases, the answer is nothing. But every mother is blamed.”
Dwarfism is also often outside the experience of doctors with whom these parents initially interact, and parents frequently recall being told of the condition with particular insensitivity. Adelson recounts one doctor’s pronouncement to the parents of a newly diagnosed child—“You have given birth to a circus dwarf”—and another’s equally heartless recommendation that a child he had diagnosed should “be institutionalized or sent to live with a dwarf troupe in Florida.” One mother reported that most doctors acted as though her daughter were defective and therefore didn’t deserve to be treated like a “real” baby. Another described being in the delivery room with her dwarf husband when the doctor said to them both, “I regret to tell you that your child is a dwarf.”
Such behavior from a doctor is not merely a breach of etiquette; the way the news of a dwarfing condition is communicated to parents may have a lasting effect on their ability to love and care for their child. Mothers and fathers are helped by knowing right away that the child will have a full life span, that they did not cause the dwarfism through acts during pregnancy, and that their child can lead a happy, healthy, and independent life. Parents, in turn, influence friends and family; embarrassed parents create awkward friends. In addition to LPA, organizations such as the MAGIC Foundation and the Human Growth Foundation have fact-filled websites and sponsor both online chat rooms and local support groups, providing average-size parents of dwarf children opportunities to meet dwarfs who are living positive, fulfilling lives.
Nonetheless, many parents begin in sadness, denial, and shock. One dwarf, Ginny Sargent, wrote online, “No matter what we (as dwarfs) feel about how great it is to be alive, I still can’t help but wonder how much more pain (more than I) my mother was in when I was in discomfort . . . upset, hurt, or disheartened and beaten down by my uniqueness.”
Matt Roloff, former president of LPA and father on the popular television program Little People, Big World, said, “My parents didn’t wonder what I would like to do, what kind of woman I’d marry, or how many children I would have. They wondered what I could do for a living, if I could ever marry, and if I could have children.” He is now married to Amy, also a dwarf, and they have four children. Little People, Big World, which ran for almost four years on the Learning Channel, documented the Roloffs’ lives on their farm in Portland, Oregon. The show is somewhat voyeuristic but fairly clear of sensationalism, and it has helped to normalize perceptions of LPs.
Amy Roloff grew up in a household in which few accommodations were made for her. Friends who came to visit wondered why the phone was positioned where she needed to climb on a stool to reach it. “My mom said, ‘If Amy has to learn to adapt outside of the home, she might as well feel comfortable and learn to adapt within the home.’ Nothing was really tailored to my needs, and that was a good idea, ’cause I’m more independent.” The Roloffs have three average-height sons and one, Zach, with achondroplasia. Amy didn’t want to set up a house that suited the LPs in the family and felt foreign to the average kids, so she kept things “regular.” She encouraged Zach to be both proud of and nonchalant about his dwarfism. “He said one day, ‘Mom, we were playing and the kids were a little too rough.’ I said, ‘Zach, why don’t you be a little grateful that, perhaps, this was a moment where they don’t even think of you as a little person; they’re just hanging out and goofing around with you? That’s a good thing.’”
This equalizing spirit is extended to all of her children. Jeremy is the eldest and the tallest. “I have to remind Matt that we can’t take advantage of Jeremy because he’s tall. I don’t want him to think that he’s only good in the family ’cause he’s tall.” But even the New York Times, commenting on her children as they appear on TV, described Jeremy as “a gorgeous young athlete who manages the soccer ball with lazy grace,” and his brother Zachary as having “a clever and intense persona.” There’s nothing wrong with a clever and intense persona, but it’s interesting what different vocabulary comes up when the writer is describing, with kind intent, someone with a body that is not beautiful within the conventions of our larger society.
• • •
Lisa Hedley hosts her own radio program on NPR and is chief executive of a group of spas. She used to be a ballerina and comes from a prominent New York family; she lives between the city and Connecticut. The film she produced and directed for HBO, Dwarfs: Not a Fairy Tale, is joyous, yet clear-eyed about the difficulties faced by the people whose lives it chronicles. Lisa did not have the wisdom of that film when her daughter, Rose, who has achondroplasia, was born. While Lisa was in the hospital after Rose’s birth, “they gave me a little pamphlet called ‘My Child Is a Dwarf’ and some other materials that showed a photograph of a toothless man cleaning the street, and another photo of dwarfs tending sheep,” she recalled. Lisa decided she would do whatever she could to keep Rose from such conceptions of dwarfism.
When Rose was two, Lisa wrote an article for the New York Times Magazine, in which she said, “With one word my husband and I became unwitting members of a community whose bonds are not only the natural elations and tribulations of parenthood but also deeply confusing sorrow—a new understanding of random events, a skewed sense of reality. It never occurred to me, not even in my wildest disaster scenarios, that I would have a child different enough to elicit stares and change the way I think about a trip to the store or a walk on the beach. Early on I learned that the way other people react to a child of difference becomes integral to your experience of the world. Perhaps the most important thing about people’s reactions is that they take their cues from me: if I’m cheerful and positive, people are delighted to point out all of my daughter’s special qualities—bright eyes, charming smile.”
When Rose turned four and developed self-awareness about her condition, Lisa sent her to a child psychologist so she could have a relationship in place if she ran into bumps and challenges as she engaged with the world. “Rose went one day a week after school,” Lisa said. “But she hated it from minute one. She didn’t want to talk about herself. She was almost vicious about it. I realized that we were medicalizing her condition, turning it into something that required treatment, when, in fact, she doesn’t require treatment at all.”
Lisa has had to balance her relationship with Rose against her relationship with her other three children, two of them older than Rose and one younger. “I’m particularly sensitive to her needs. I neuroticize them,” Lisa said. “Her school did a concert at Carnegie Hall, and she walks out with that funny dwarf gait, going to her seat. I look at my husband, like, ‘Did we forget she’s a dwarf?’ I tend to be shocked all over again and very sad in such situations.” Lisa feels it would be dishonest to pretend otherwise, to herself or to Rose or to the world. “I adore Rose and I can’t imagine life without Rose. I wouldn’t trade her for the world. But I’m very tall; I’m thin; I was a ballet dancer. I imagined those experiences for her. When you have a child who can’t share those things, you mourn the loss of an imagined life. On the other hand, I have an almost violently passionate feeling of who she is.”
Rose refuses to give audience to self-pity. “She’s very heroic about it, very strong,” Lisa said. “But her battle is so relentless. I’m a private person and I don’t like it. It’s like being a celebrity when you didn’t mean to be. We walk down the street and people go, ‘Hi, Rose.’ She’s always trying to escape it, and she never can.”
Rose has not identified with other little people, so the family has not been involved in LPA. It’s always difficult to know how much such decisions create an attitude and how much they reflect it. “Support groups and conferences: is this something our family would do under normal circumstances, join any group, go to any organization?” Lisa said. “The answer is decidedly not. I asked Rose, ‘Do you think it would be better if you knew some other little people?’ She said, ‘No, I want to live here in the life I have. I have plenty of friends. I know who I am.’” Lisa has a friend with a short-statured daughter a year younger than Rose. The family is very involved with LPA and returns from conferences with pictures of “really cute teenage little people,” but Rose shows no interest. “The underlying question is to what extent we are fostering denial,” Lisa said.
There is a cliché that dwarfs are often “feisty” (a particularly noxious word), and myriad articles run under headlines such as “Little Person, Big Personality.” Some of this is just patronizing. Some of it, however, reflects the personality consequences of living as an object of near-universal curiosity. “None of my other children is as tough as she is, nor is my husband, nor am I,” Lisa said. “Rose is very angry. It comes from just having to deal with it all the time.”
The family arranged life around Rose more than she realized. They had an opportunity to move to London but stayed in the United States because they didn’t want to unsettle her. Rose is a serious athlete, and her passion is riding. “I would never have chosen that for her,” Lisa said with pride. “But my oldest son was a very good horseman, nationally ranked, and she saw that glory. She can tolerate going out into a ring, in front of a judge. She’s competing against average-stature kids, all these cute little girls with pigtails and long, lanky legs, and she still wins awards. She sits up straight and proud. People keep saying, ‘Isn’t that amazing?’ She doesn’t want to be amazing because she’s a dwarf. What she wants is to be judged like the others.”
Lisa has been called on frequently to be a mentor and has convinced many women to keep their pregnancies after learning they were carrying a dwarf. She has also recommended adoption; she described meeting a family who simply couldn’t deal with the prospect of having a disabled child. “Their older daughter was a cheerleader, and they thought she would be devastated because her ‘sister would be such a freak’; those were the words the mother used. She ended up giving the baby away. Her new baby was never going to be a cheerleader in Westchester, so she couldn’t love her.” Another family she met with already had a dwarf child. “That family was economically and demographically very close to us,” Lisa said. “So I thought, ‘This is perfect: the girls can grow up together.’” She was shocked when the parents decided to give their daughter limb-lengthening, a controversial procedure that involves repeatedly breaking bones and stretching muscles. “It was a tough lesson, that just because their daughter is little doesn’t mean we’re going to have anything in common spiritually or emotionally. Five years in and out of wheelchairs. Limb-lengthening really frightens me for medical reasons, and even more because kids are busy forming their identity and who they are at that age. How do people become their best self? Not by constantly trying to change details.”
Lisa said that, in spite of all her questioning, what had frightened her at first had, at some level, become unquestioned. “I was at Johns Hopkins Hospital for one of her treatments many years ago. I was carrying her on the elevator. This other mother got in with her child, who was drooling and had, clearly, a very profound case of Down syndrome. I was looking at her with total pity, like, ‘Oh, I can deal with mine, but I would not know what to do with yours.’ And that was exactly how she was looking at me.”
• • •
Parents can establish a relationship with dwarfism as an identity: travel to dwarf conferences, involve dwarfs in their child’s life, put light switches where they are easily reached by a person of short stature, and refit the kitchen to make it convenient for a little person to cook there. There is a danger, however, that a child who grows up with short stature as a primary identity may feel trapped in a context he never chose. Even if he does not, he will have to face the identity’s inherent limitation. You can elect to associate primarily with people who share your religion, ethnicity, sexual orientation, political convictions, recreational preferences, or socioeconomic status, but there just aren’t enough dwarfs to make an all-dwarf life feasible.
Parents may prefer to mainstream completely: to persuade their child that being short is not so different from being tall, to encourage him to make friends with other children without regard to height, to say that the tall world is the real world and he will just have to get used to it. But it can be a strain to be told constantly that you don’t really have a disability. Barbara Spiegel described how she would ask her father to hand her a glass from the cabinet. Her mother would say, “You’re quite capable of getting it yourself,” and would insist that Barbara drag a stepladder across the room rather than have the glass handed to her. “Sometimes it was a little extreme,” she said. The idea of being just like everyone else, only shorter, is normalizing, but social context does not always support that normalization, and avoidance of the LP world can come at the cost of considerable isolation. Life often gets tough in middle school and high school; few teenagers of average height will date someone who is three foot six. “Most of the people I found attractive, guy-wise, were exceptionally tall,” Barbara said. “I really didn’t picture myself with an LP. I never imagined that I would marry one—no, two!—LPs.”
What is right for one dwarf and family may not be right for another dwarf and family, and most families combine elements of various approaches—providing some access to the LP world, making an attempt to put their child at ease in the non-LP world, and availing themselves of medical treatments that respond to their child’s specific needs and desires. The exact nature of the balance differs from household to household. Research indicates that short-statured people generally outscore their parents on measures of overall contentedness, which is to say that parenting a dwarf seems to be emotionally harder than being a dwarf. Another study found that people with achondroplasia were four times as likely as relatives to view their condition as “not serious,” as opposed to “serious” or “lethal.” One’s own identity, replete with problems though it may be, usually looks more tenable than someone else’s identity. Of course disparities of income and education are factors, and it is obviously more of a challenge to support a short-statured child with intellectual handicaps or severe skeletal and health problems than it is to deal with someone who is, in effect, just little. It is interesting to note that those close relatives of dwarfs who perceived the dwarfism as more burdensome for the affected individual were likely themselves to rank lower on inventories of happiness.
We still fit people into the binary of disabled or nondisabled; we grant those who are officially disabled social assistance, legal protections, and special parking spaces. It’s difficult, though, to delineate where disability sets in. A man who is five foot six might prefer to be six feet tall but is not disabled. A man who is four feet tall faces significant challenges. Many dwarfs experience serious physical disabilities, but even putting aside medical problems, being short has a price. Dwarfism is recognized under the Americans with Disabilities Act (ADA), under which dwarfs are classed as “orthopedically concerned,” but LPA long resisted the classification of dwarfism as a disability, though their position has now changed. No law requires supermarkets to provide a means to retrieve merchandise from high shelves. Legislation does not consistently mandate that gas pumps or cash machines be installed at a height that makes them accessible to little people. The federal government will not pay for adaptive equipment for people who wish to drive but are disabled by virtue of their short stature. Paul Steven Miller, an achondroplastic dwarf who served as commissioner of the Equal Employment Opportunity Commission in the Clinton administration, said while in office, “It’s fair to say that LPA as an organization is not really an active player in the broader disability movement at the national level. But I think that that’s the direction we’re headed in.” That move reflects a shift at LPA, spearheaded by their advocacy chairs Joe Stramondo and Gary Arnold, a generation younger than Miller, to engage with an ever-broadening definition of disability and an ever-broader range of services associated with disability status.
Rosemarie Garland Thomson argues in her book Extraordinary Bodies that “the ‘physically disabled’ are produced by way of legal, medical, political, cultural, and literary narratives that comprise an exclusionary discourse.” But much of what extremely short-statured people cannot do is determined less by social attitudes than by physical arrangements made by the majority of human beings to suit taller people; the high-minded rhetoric around disability can feel like unwelcome clutter to some dwarfs. One mother of a dwarf worried, “I couldn’t decide whether or not to request a handicapped parking permit. Would our daughter feel stigmatized? At school, should we get special step stools at the toilets? There is a problem of constant accommodation, but should we call it a disability?” The LP actress Linda Hunt once wrote, “Dwarfism, after all, isn’t like cancer or heart disease. It isn’t fatal, and it isn’t even an illness. It is physical, though, and inescapable. You don’t get over it. It is you. But you aren’t it, and that’s an important distinction.”
The public still lacks a nuanced understanding of the various words used to describe little people. The first meeting of LPA (convened in 1957 as a publicity stunt to benefit the town of Reno, Nevada) was called Midgets of America. The fledgling organization’s name was changed in 1960 to Little People of America so that little people of every description might feel welcome. The word midget, first coined to describe LPs displayed as curiosities, and drawn from the midge, an annoying small insect, is now considered deeply offensive—the LP equivalent of nigger or spic or faggot—and many mothers told me how much they feared that their child would be subject to this appellation. But the general population doesn’t know that midget is an insult, and most people who use the word do so without ill intent. Is the use of an inappropriate word evidence of prejudice if the user doesn’t know that the word is stigmatizing? The most famous small stars of P. T. Barnum’s sideshows were proportional dwarfs, whose bodies have the same relative scale as those of average-size people. The term has frequently been used to refer to those whose small stature results from a pituitary anomaly rather than a skeletal dysplasia. When the New York Times used midget in an article on its business pages in 2009, there was outcry from LPA, and the Times revised its stylebook. But the term dwarf has its own burdensome associations. Barbara Spiegel has two children with achondroplasia, and she tried to bring them up with a sense of pride in who they are. When her older daughter asked what she should say to the kids in her kindergarten class about her stature, Barbara said, “Say you’re a dwarf.” Her daughter put her hands on her hips and said, “But I’m not make-believe!”
Betty Adelson, recently asked by journalist Lynn Harris what people of short stature prefer to be called, said, “Most individuals prefer simply to be called by their given names.”
• • •
When Rebecca Kennedy was born in Boston in 1992, her doctors feared that she had inhaled meconium (prenatal stool), so she was brought immediately to the special-care nursery. After noticing that her head was rather large and her limbs rather small, one of the doctors announced to Rebecca’s parents, Dan and Barbara Kennedy, that their newborn child probably had “either dwarfism or brain damage.” The prospect of brain damage was terrifying, and so the diagnosis of achondroplasia, made three days later on the basis of X-rays, was an immense relief. The people at the hospital were positive about Becky. “A generation earlier, parents were given a negative view of what to expect,” Dan explained. “We were given a very positive view of what to expect—maybe too positive. We were pretty much told, ‘Things are fine; enjoy her; take her home.’” Dan’s doctors were expressing a shift in attitude that people with disabilities have fought to effect. Most disabilities, however, require accommodation, and doctors do parents no favor if they trivialize the challenges ahead.
For five months everything appeared to go well. Then Becky contracted a respiratory virus that overwhelmed her delicate system. She ended up in the intensive care unit for more than a month and was given a tracheotomy. For two years, she had to have supplemental oxygen, and the Kennedys lived with a parade of nurses. By the time Becky was two and a half, her airways were developed enough so that the tracheotomy could be closed, and she has since been a reasonably healthy child. “The dwarfism was not that big a deal, but all this other stuff was a big deal,” Dan recalled. “We’ve always wondered what effect those two years—with the tracheotomy, the night nurse—had on the subsequent development of her personality, and I don’t think we know yet.”
When Becky fell sick, Dan found LPA, and he was put in touch with Ruth Ricker. “Ruth was employed in a good job, turned out to have gone to the same college that we did, and was a smart and funny person, and I would have been happy to see Becky turn out like her,” he said. Through Ruth, the family started to attend regional LPA events. Dan and Ruth developed the LPA website in the early days of the Internet, and Dan continued to manage and edit it for many years.
Becky has had some learning issues, which Dan attributes to hearing loss, a not uncommon complication among people with achondroplasia. When I interviewed Dan, Becky was ten and a half, and her father was anticipating the difficult waters of adolescence. “Becky looks in the mirror and she likes what she sees,” Dan said. “But I don’t kid myself. I assume that her most bitter critique of dwarfism is yet to come. Every adult dwarf I’ve ever talked to, almost without exception, says by the time they hit their twenties, they’re proud of who they are and wouldn’t change anything. But their teen years were hell. She doesn’t have many friends now, and it’s only going to become more difficult.”
Dan began writing Little People: Learning to See the World Through My Daughter’s Eyes. “I look at dwarfism as a metaphor for difference,” he said. “Whether we value it; whether we fear it; whether we would stamp it out if given the opportunity.” The research he did gave Dan insights that have helped Becky. He got a handicapped placard for his car because he realized that walking long distances was bad for anyone with a compressed spine. “Lee Kitchens, former president of LPA, said to me, ‘Better a handicapped placard now than a scooter when she’s thirty,’” Dan said. In his book, Dan complains that the freedom people felt in approaching him with questions about his daughter communicated “the unspoken message that Becky is public property, and that her parents are obliged to explain her to the world.” Whether they like it or not, parents of dwarf children often feel they must display their families as emblems of diversity. “I’d like to think grappling with this has made me a better person,” Dan said, “but I still don’t think I’m very patient. Frankly, your life is in the hands of outside forces, and you just have to go with it. This definitely made me better at that.”
• • •
More than two hundred genetic conditions lead to exceptionally short stature. Approximately 70 percent of dwarfs have achondroplasia; other dwarfing conditions include pseudoachondroplasia, spondyloepiphyseal dysplasia congenita (or SED), and diastrophic dysplasia. Little People of America designates as a dwarf anyone who is four foot ten or under as the result of a medical condition. This description does not officially include people with dwarfing conditions who grow taller than four feet ten inches, nor would it apply to children with no genetic anomalies whose dwarfism results from malnutrition or parental abuse and neglect. Nonetheless, such people are in general welcomed at LPA. The average height of a female achondroplastic dwarf is four feet, and of a male, four foot three. There are more than two hundred thousand people of short stature in the United States, and Victor McKusick, a geneticist specializing in diseases of connective tissue, has estimated that there are several million worldwide. The distance such people must travel to find expert help can be considerable; medical costs can be staggering; insurance often covers only a fraction of the liability a family faces. More than two dozen physicians serve on LPA’s Medical Advisory Board, and conferences allow dwarfs to avail themselves of expert advice.
The mechanism of achondroplasia is an overactive gene, the same one that causes the bones of average people to stop growing at the end of adolescence. This process is kicked into gear prematurely by a variation of a single nucleotide. Achons (slang for people with achondroplasia) have short limbs in proportion to a fairly average trunk, and a large head with a protuberant forehead. People with SED, a more disabling condition, tend to be shorter than those with achondroplasia; they often have clubfeet, cleft palate, wide-set eyes, a small mouth, and a barrel chest that develops when their ribs grow faster than their spine. Diastrophic dysplasia is distinguished by clubfeet and cleft palate; “hitchhiker’s thumb,” which is low on the hand and has little flexibility; and a “cauliflower ear” similar to the calcified-ear deformities that many professional boxers develop. Diastrophic dwarfs often become so bent that they are unable to walk. The condition results from a recessive gene, so both parents must be carriers—and are usually unaware of it. Though the numbers vary, it would appear that achondroplasia occurs in about one in twenty thousand births, while one in ten thousand has a dwarfing condition, some of them fatal.
Since newborns always have short limbs in relation to their heads and torsos, the revelation, as with deafness, may come immediately or may be gradual. Most dwarfs are diagnosed by the age of two. Because their chests are small, their airways may be dangerously narrow, leading to rapid breathing, obstructions, and sleep disturbances. Infants with achondroplasia are also at increased risk for life-threatening brain-stem compression, in which pressure on the lower brain impedes its function. A study of mortality in achondroplasia determined that the risk of dying within the first four years of life was more than one in fifty. The chance of dying in childhood, adolescence, or young adulthood is also vastly increased. The body temperature of newborn dwarfs is somewhat higher than that of average infants, and carbon dioxide retention causes them to sweat more. Hydrocephalus and recurrent, damaging ear infections caused by variations in craniofacial shape may also complicate matters. Several other, low-incidence conditions are associated with mental retardation, including dwarfism caused by inadequate iodine, intrauterine growth restrictions, or psychosocial deprivation. Although cognitive and intellectual development generally proceeds apace, little people may still be challenged at school because of early oxygen deprivation resulting from an underdeveloped pulmonary system; because of damage to their hearing, from the repeated ear infections to which they are prone; or because of the need to focus energy on compensating for social stigma.
Early diagnosis is critical; many serious complications can be avoided through appropriate prophylactic treatment. Children with achondroplasia should have X-rays and scans to monitor their neurological and skeletal development. They may need complex dental work if their jaw is too small for their teeth. Some children have spinal columns too thin for their nerves to fit in without being pinched. This can lead to weakness, numbness, and pain. Small airways make the risks of anesthesia higher for dwarfs. If a curvature of the spine is not corrected early on, a dwarf child may develop a hunchback. An infant with a skeletal dysplasia should not be left sitting up, as his head is too heavy for his spine to support. Additionally, he should not be placed in any seat that curves the back; car seats should be padded to prevent him from resting his chin on his chest.
Because their heads are too heavy for their necks, many young children with achondroplasia cannot hold them up when they are crouching; only a fifth of them learn to crawl. Snowplowing and reverse snowplowing entail resting the head on the floor as a balancing point while using the legs for propulsion; spider crawling, log rolling, army crawling, and seat scooting involve exactly the sorts of motion that their vivid names imply. When children with achondroplasia are ready to walk, they often stand by jackknifing, keeping their head on the floor while straightening their legs, then lifting the upper body to achieve a full upright posture; muscle tone may be low, and joints may be unusually stiff or loose. Short-statured children perform these and many other acts in a unique way or at a later developmental stage, and LPs are supposed to avoid gymnastics, high diving, acrobatics, and collision sports because of possible joint and skeletal issues. They are encouraged to do swimming, golf, and other lower-impact sports. Because LP children should properly eat only about half as much as their average counterparts, many struggle with weight, a problem that LPA attempts to address in educational materials and panel discussions.
In adulthood, LPs may suffer chronic back problems, allergies, sinus problems, arthritis, rheumatism, hearing impairments, spine deformities, sleeping difficulties, chronic neck pain, or paralysis or weakness of the upper or lower limbs; they are far more likely than their average counterparts to undergo surgeries throughout life. The defining issues for most adult dwarfs are skeletal. The dysplasias are often associated with spinal stenosis, joint deformity and degeneration, and disk problems. In adults with achondroplasia, the narrowed spine often needs to be decompressed surgically to alleviate symptoms such as shooting pains down the legs, weakness, numbness, tingling, and pins and needles. Curvature of the spine may result in mechanical and neurological complications that affect the heart and the lungs, as well as mobility. Surgeries often performed on dwarfs include lumbar surgery for spinal stenosis to prevent paralysis and pain, cervical-spine surgery that ameliorates limb weakness, surgical division or sectioning of bone for bowleggedness, the insertion of shunts for hydrocephalus, and interventions to resolve obstructive apnea.
• • •
Leslie Parks’s parents were not pleased when she began hanging out with Chris Kelly during her senior year in high school in Huntsville, Alabama. The future they had imagined for their daughter had not included a romantic entanglement with a dwarf, even one who was a local celebrity, a DJ with his own radio show. “I was your typical middle kid, nothing special about me,” Leslie said. “So I sort of fell into it with him. I was in student government, and he would DJ parties. From the beginning, my parents were like, ‘Nip it in the bud. He’s divorced, he’s got kids, he’s a dwarf, he’s a DJ, and he’s no good.’” Leslie felt she was dating a star, but her parents didn’t see it that way, and they threw her out of the house her senior year. Within a few months, Leslie and Chris were married.
When Chris was young, his parents had tried every new “treatment” on the market, including injections of growth hormone made from the pituitary glands of monkeys. Because of or in spite of the shots, Chris had made it to four feet ten inches, which is tall for a person with achondroplasia, and firmly refused to regard his dwarfism as a medical condition to be cured. “He got into being a DJ and a stand-up comic because he needed the approval of the masses to feel good about himself,” Leslie said. “What he didn’t particularly need was a one-on-one relationship.” Chris’s two children from his previous relationship were both of average height. When Leslie became pregnant, a few months after marrying Chris, she had no thought that she might be carrying a dwarf. At seven months, she went for an ultrasound. “They said, ‘His head is too big for seven months. But his femur is much too short for seven months. What’s going on here?’” Leslie knew exactly what was going on. “I was devastated. I’m glad I found out ahead of time, because I had time to get the mourning over with by the time he was born.” Leslie could not talk to her husband about her despair at the prospect of a child who resembled him.
A tomboy who went through precocious puberty, Leslie had always had a skewed self-image. “In third grade I was developing already, and people made fun of me. I was always ashamed that my body wasn’t right.” She was overweight when she met Chris, became bigger after they married, and grew enormous and somewhat depressed when she had Jake. “I remember bringing him home from the hospital, thinking, ‘This is the worst babysitting job I’ve ever had. When is his mother coming for him?’” Leslie’s parents were horrified to have a dwarf grandson, but over time their attitude softened. Leslie’s mother was a pediatric nurse, and she sent Leslie to a neurologist at Birmingham Children’s Hospital who had experience with LPs. Leslie’s pediatrician had told her that Jake’s frequent vomiting was normal and that she could straighten him out when he arched his back in his sleep. “Then this specialist said, ‘Does he sleep with his head back and his neck arched? That’s how they achieve the most free, unobstructed breathing. Don’t move his head.’ I didn’t know.”
Chris, like the local doctors, tended to minimize his son’s condition, while Leslie’s parents clearly regarded her life as a calamity. Leslie and Chris became increasingly alienated as they navigated these issues, eventually divorcing when Jake was two. As a child, Jake would sometimes weep, saying, “I don’t want to be little.” Leslie wanted to cry, too. “What would be wrong about letting him know that you hurt for him, too?” she said. “You don’t want your child to perceive that you think his situation is hopeless, but also you don’t want to deny his experience. A few times, I’ve said, ‘Have you talked to your daddy about this?’ ‘No, I’m crying ’cause I don’t want to be like me, which means I don’t want to be like him. That would hurt his feelings.’”
Jake had some learning delays; his focus has been social rather than academic. By the time he finished third grade, Leslie was worried he was falling behind. Private testing revealed that he had a learning disability, so she transferred him to a magnet school for special education. He hated it. “Jake can act,” Leslie said. “He’s done stuff on TV; he’s very outgoing. He can think it, he can speak it; but as far as putting it down on paper, he can’t do that for shit. You are entitled to free occupational therapy for fine motor skills for young dwarfs, but your pediatrician has to refer you. I didn’t know to ask.”
When Jake was a few years old, Chris remarried. Soon his new wife, Donna, was pregnant. Like Leslie, Donna had assumed she was going to have an average child and was astonished when her newborn son was diagnosed with achondroplasia. Donna called Leslie to ask for advice, and Leslie was incensed. “It was like, ‘You bitch. I’ve had to sue him for child support ’cause he’s spending everything running around with you. Now you want me to make the road easy for you?’” But when Leslie actually saw the baby, Andy, she knew she had a role to play. “I started praying, ‘This is the only brother that Jake is going to have, and I need to get past this.’ And I did.” Leslie took Donna under her wing, set her up with the doctor in Birmingham, and warned her about the orthopedic challenges that lay ahead. Leslie told me, “A year ago, Chris and Donna came to me and said, ‘We’re working on our will. Would you take Andy if something happened to the two of us? We would want you to have him.’ I just cried. ‘Oh, my God, yes. Yes, I would.’”
Leslie and Chris have very different takes on parenting. “Dad is the fear side,” Jake told me. “Mom’s like, ‘Hell, yeah, you’re gonna play T-ball; you’re gonna play baseball; you’re just like everybody else.’” Leslie said, “There’s been a lot of clinging. ‘Where you going, Mom?’ ‘I’m just going to the bathroom. In forty-five seconds I’m going to come out.’ But he was almost having panic attacks. I said, ‘Get out of the uterus! You were born! Go away!’ But he needs someone going, ‘It’s okay, you can do it.’” Leslie described how she had traveled to a family event when Jake was twelve, and how everyone reprimanded her for letting him roam the hallways unsupervised. “I said, ‘He’s in seventh grade. You’re not thinking what’s age appropriate; you’re thinking what’s size appropriate.’”
Eventually, the typical problems of adolescence set in. “I don’t look at myself as a little person until somebody brings it to my attention. Normally, people do,” Jake said. Leslie explained, “Everybody loves Jake. He’s very popular. ‘Yeah, I’ll go to the dance with you. We’ll go as friends.’ They all love him and Jake’s the first one to get out and dance. Both of his counselors over the last two years said, ‘I wish all kids had his self-esteem.’ But I know that we’re coming into that painful stage of wanting girlfriends.”
Leslie decided to take Jake to an LPA convention when he was thirteen. “We didn’t know a soul,” she said. “He had planned, ‘I’m gonna make all these friends; I’m gonna go to the dance; I’m gonna do this, that, and the other.’ Now he was overwhelmed, and I was overwhelmed.” Later Jake said to me, “In regular life, I use my stature to start conversations with people, to make friends. At that first conference, all I had was myself.” Jake befriended only tall people that week, most of them siblings of dwarfs. “You’re too mainstream!” Leslie told him. “Why don’t you make some little friends?” But he wasn’t ready yet. The next year was different. “He became a real teenager,” Leslie said. “I sneaked into the dance and just sort of pasted myself to the wall. I saw, ‘He’s dancing! He’s slow-dancing!’” Leslie also caught her son lying about his age to a much older girl; it can be hard to guess the age of short-statured people, and Jake is relatively tall. “I said, ‘If I have to bust you myself, you’re not eighteen,’” Leslie said. “But at the same time, I was so glad he could carry it off.” Jake adores LPA, but it’s important for Leslie that he’s happy in his own world, as well. As Jake said to me, “It’s not like it’s the only thing about me.”
The permanent question of cure versus acceptance that runs throughout this book had particular resonance for Leslie Parks. When I met her, she had recently undergone gastric bypass surgery. She had already lost thirty pounds and was aspiring to lose another hundred. “Being fat was my cross to bear,” she said. “Being short is Jake’s cross to bear. I’ve had these terrible feelings of guilt that I’m abandoning him. How can I say to my child, ‘You have to learn self-acceptance and be okay with who you are’—but yet, I’m not. It’s not my agenda for him to be tall. But if the work on regulating that gene went to trials, I’d be right there. Feeling so bad about my body, I’m open to what could be done for him. But I don’t want to put my issues onto him. Unfortunately, it’s almost impossible to get both those messages across.”
• • •
Although most dwarfs are plagued by public mockery and can face serious restrictions and health problems, the cliché that they are cheery children seems to hold. Recent work suggests that this is most probably a form of compensation to ease social situations rather than a trait biologically linked to their condition. Many LPs feel, however, that this view of them trivializes the difficulty of their lives. Initial emotional development appears to be reasonably positive; on measures of overall happiness, LPs fare rather well in childhood compared to the general population. Parents have a difficult time as their children start to ask why they are so different. Euphemizing the details can be as toxic as playing them up. In Living with Difference, the anthropologist Joan Ablon writes, “Overprotectiveness is a pitfall most parents see themselves falling prey to at one time or another.” Dwarf children often complain of being infantilized. In his guide for parents of dwarfs, Richard Crandall, founder of the California-based Short Stature Foundation, recommends, “Don’t give in to the temptation to use a stroller beyond the normal age of stroller riding. Yes, your child may have to take four steps for every one you take, and this may slow you down at the mall. But it is better to arrive one-half hour early and walk together with your child at his pace than to treat him like a baby in a stroller.” The Restricted Growth Association (RGA), the British equivalent to LPA, summed up results from a 2007 survey by observing that those who were treated in a more normal fashion tended to become more self-confident, and in turn more accomplished as adults.
In adolescence, LPs start showing higher levels of depression, as well as lower levels of self-esteem, when compared with their average-height siblings. Levels of depression seem to be higher for LPs with average parents than for LPs with LP parents, which may imply that despite best efforts all around, parents who know firsthand the trials of being an LP may be able to respond with greater empathy or sensitivity to their child’s experiences. More profoundly, it reflects the difference between growing up with a vertical identity and growing up with a horizontal one; dwarf children who grow up with adults built like them internalize a more self-affirming conception of normal than those who are surrounded by family members of average height and proportions. As teenagers reach their full height, the contrast between dwarfs and their peers is thrown into relief. At that point, many LPs who had been content to live in a world of average people begin to feel the acute need for contact with other LPs, for whom their appearance is not erotically aberrant. LPA and similar organizations can be a blessing, though they can, equally, be a trial; Ablon points out that attending LPA can traumatize people who have blamed all their problems on their dwarfism, and who must now come to terms with personal flaws.
• • •
Dwarfs are stared at more and more as they mature and cease to look simply younger than they actually are. One recent study observed that adults with achondroplasia have “lower self-esteem, less education, lower annual incomes, and are less likely to have a spouse.” The income statistic bears witness to institutional discrimination against LPs; the study found that while three-quarters of the dwarfs’ family members, presumably demographically similar to them in most regards, made more than $50,000 per year, less than a third of the dwarfs made that amount. The great majority of college-age LPA members attend college, but outside LPA, the numbers are probably much weaker. Michael Ain, who has achondroplasia and is now a pediatric orthopedic surgeon at Johns Hopkins Hospital, recalled his experience as a medical school applicant. “In the one field where you think people would be most understanding, they were the most bigoted. Doctors told me, ‘You can’t be a doctor. Don’t even apply.’ The first guy I interviewed with told me I couldn’t hold the respect of my patients, because of my stature.” The level of prejudice can be truly astonishing. Ruth Ricker, former president of LPA, took a tenant who rents space from her out to dinner, and the waiters kept addressing the tenant, asking, “What would she like to eat?” Ricker said, “I’m the one with the good job; I’m the one with the good education. I own the condo, she pays rent to me, and they’re treating me as if I’m completely incapable.”
Some dwarfs who are not members of LPA regard their nonmembership as a political stance. John Wolin, an LP sports writer at the Miami Herald, summed up his issues with LPA by saying, “When one is different, when what you are has the ability to determine who you are, there is an urge to resist.” Another LP was quoted in Newsday saying, “Believe it or not, the hardest thing for a dwarf is to meet another dwarf for the first time. When you look into the mirror, you don’t see a dwarf. You see what you want to see. But when you see another LP on the street, then you see the truth.” Members of LPA often accuse such detractors of being self-loathers who have not come to terms with their dwarfism, and, indeed, Wolin describes being guided through an LPA conference by a younger woman who was a longtime member and said, “She was a lifetime of self-acceptance ahead of me.”
• • •
The day Beverly Charles was born in 1973, the doctors told her mother, Janet, that her daughter was always going to be small. But Janet, who had little education and no previous experience of dwarfism, did not understand how small. When she relayed the news to her husband—a Vietnam vet permanently in a wheelchair—he replied, “Small or large, we’ll love her just the same.” In the months that followed, Janet brought Beverly to the pediatrician once a week to monitor her growth, but Beverly was a poor eater and her weight stayed relentlessly the same. “The doctor said we didn’t need to worry unless she started losing weight, but that happened at about three months, and I was beside myself,” Janet recalled. It later turned out that Beverly’s nose was completely obstructed; she was unable to breathe and eat at the same time, so suckling was a constant challenge for her.
The doctors in Lancaster, Pennsylvania, where the Charleses live, referred her to specialists in Hershey. One of them recommended treatment at a clinic in Germany, and he said he would try to raise money to send Janet and Beverly there. “But I was afraid,” Janet told me. “I thought they’d see how little my child had grown and take her away from me.” Beverly’s dwarfism is most likely the result of a pituitary shortage, since she lacks the dysmorphism characteristic of the dysplasias, but the doctors in Hershey said there was no more they could do. No one told them that Johns Hopkins, less than two hours away, was a center of excellence in dwarfism, nor that Beverly’s form of dwarfism might well have responded to the timely use of injected growth hormone.
It soon became evident that Beverly had significant learning disabilities. Her mother accompanied her on the school bus every day so she wouldn’t be alone. Elementary school was lonely; high school was horrible. “They teased me and teased me,” Beverly told me. One boy bullied her relentlessly. “I don’t believe in violence,” Janet said. “But I told Beverly, ‘Next time he bothers you, just punch him in the nose as hard as you can.’” The boy’s parents visited Janet and asked, “Where is your daughter who gave our son a bloody nose?” Janet pointed at Beverly, three foot seven, sitting on the sofa. The teasing stopped.
After high school, Beverly continued to live at home, working first at a Salvation Army shop, then at a printing press. In 2001, when Beverly was twenty-seven, Janet saw a mention on TV of an organization called Little People of America. She had never heard of LPA or known that there existed any community of little people. The only other little people she and Beverly had ever encountered were an elderly couple who worked in a grocery store in downtown Lancaster. Janet called the head of the local LPA chapter, saying, “I have to talk to you about my daughter. Will you come have lunch with us at Friendly’s?” This was the beginning of what Janet calls Beverly’s “rebirth.” “I wasn’t lonely anymore,” Beverly said. They attended local LPA chapter meetings, always together, and the following year went to their first national convention.
When I met the Charleses, Beverly was just a few days short of her thirtieth birthday and still lived at home. I was touched by her childlike affect: as we talked, Beverly sat curled in her mother’s lap. Janet assured me that outside the workday, they were never apart. “I don’t let her go anywhere alone,” Janet said. “Look how Elizabeth Smart was abducted—I don’t want to take any risks.”
• • •
In New England in the late 1950s, dwarfism was considered shameful, and when Leslye Sneider’s mother learned she had given birth to a dwarf, she had a nervous breakdown and spent three years in a psychiatric hospital. “My mother was thirty-eight,” Leslye said. “She has a very fragile makeup to begin with, and she just could not accept it. So she never saw me; never held me. I was born and she plummeted.” Leslye’s father did not do much better. “When the doctors told him that I was going to be a dwarf, and my mother was shipped off to McLean, it was the last straw. So he moved back in with his parents, and I was raised all around the state of Maine, by my maternal grandmother and a couple of my aunts.”
When Leslye’s mother came home from the hospital, “she did her best with what she had,” Leslye remembered. “But my mother never got to grips with my being a little person. When we would go out shopping, and somebody would make a comment or stare, my mother would say, ‘Oh, God! Why do I have to deal with this?’” Leslye’s father remained distant; her closest relationships were with her babysitters, mostly French Canadians who had migrated to Maine. “They were from really wonderful, loving French Catholic families. I used to go to church with them, even though my parents were Orthodox Jews. I hate to think what my life would have been like without them.”
At eleven, Leslye had never met another little person. That year, her mother became aware of LPA and took Leslye to a regional conference. When Leslye was sixteen, she attended her first national conference. “We’d receive newsletters all the time from the national organization, and there’d always be pictures of these young adults having this wonderful time. They were always the same ones. Within LPA, there are people on the sidelines, and people who are involved quietly, and then there’s the ‘in’ folks. Somehow, I fell in with that crowd.” Leslye had been miserable in high school. “I think LPA was what high school would have been had I been average-size.” Leslye pursued dating possibilities, but it was difficult to get to know someone well enough in a week for a long-term commitment. “Many of us end up in relationships that we would have maybe not ended up in had we had more time to think about it. I ended up with a wonderful person, but we were light-years apart in terms of interests,” Leslye said.
For a long time, Leslye wasn’t told what had pushed her mother over the edge and into those long hospitalizations, but at some level she always knew. Her understanding that she had caused her mother to go crazy weighed heavily on her. “As a result of that, I’m very interested in early child development and object relations theory,” she said. “Probably also as a result of that, I have no children. I have a lot of unresolved anger instead.”
Many of Leslye’s closest friends from LPA were from California, so she applied to UCLA and was accepted. She found a therapist and went on antidepressant medication, which she has taken ever since. “It made me realize that for so long, I’d been operating not quite up to par. All of a sudden, whoa. Is this what normal feels like?”
Leslye was nearing fifty when we met and had made peace with her life. “I always come back to feeling that I wouldn’t have wanted it different,” she said. “I’ve had some amazing experiences as a result of being a dwarf.” Leslye befriended Dustin Hoffman when he was working on a project that included a dwarf. She became romantically involved for nine years with Paul Steven Miller and got to know many of the people in the first Clinton administration. “I was exposed to another life,” she said. “Paul was really instrumental in my going back to school.” When we met, Leslye was running Albuquerque’s Protection and Advocacy System, an important civil rights position within local government. “I sometimes wonder which has had a bigger effect on my life—my dwarfism or my depression and all the other depression around me,” Leslye said. “The dwarfism was easier to overcome than the sadness.”
Since she and Paul split up, Leslye has been romantically involved with Bruce Johnson, an artist who is also a dwarf. “I wouldn’t be with Bruce if I weren’t little,” she said. “How can I regret being an LP when it led me here?” Bruce’s family had been the opposite of Leslye’s—open and accepting. When he was born, the doctor’s advice to his parents was “Take him home and treat him like any other baby,” and that is what they did. Despite this, he admitted, “Sometimes when I watch another dwarf, I feel like we’re pretending to be adults. It’s a life’s project coming to grips with, really, how you look.” Bruce is significantly disabled. “If I could do it over, I’d want not to be a dwarf. It’s been too difficult. I’ve had many more health complications and surgeries than Leslye, and I’m worn out. She’s the best thing about being a dwarf for me, but I’d have loved her anyway.”
• • •
Many dwarfs have agitated against dwarf-tossing, a “sport” in which a dwarf is put into a harness and a person of average height, often drunk, hurls him as far as possible onto a mattress or other padded surface. So far, laws against dwarf-tossing exist only in France, Florida, Michigan, New York, and the city of Springfield, Illinois. Both the Florida and French bans have survived legal challenges. The New York ban has required occasional enforcement since it was enacted in 1990. In March 2002, police issued citations to participants in a dwarf-tossing competition at a Long Island tavern; a February 2008 “dwarf bowling” meet planned by a Staten Island bar owner was canceled after a local newspaper reported that this variant on dwarf-tossing (in which a dwarf on a skateboard is rolled down an alley to knock over a set of pins) was also illegal. A 2005 SEC investigation into excessive and inappropriate gifts to securities traders found dwarf-tossing among the festivities featured at a lavish, $160,000 stag party financed by Fidelity Investments for one of its star performers.
That such objectification still takes place today is shocking, but the practice seems particularly demonic given the skeletal problems that dwarfs commonly suffer, which can be exacerbated by impact. Dwarfs in dwarf-tossing competitions are often in difficult circumstances and can make a desirable nightly income from participating; some have protested that they should be allowed to earn their living however they want to and have pointed out that pro football also leads to damage to the body. Others believe that tolerating the practice injures not only those dwarfs who allow themselves to be tossed but also the rest of the dwarf community, creating a public perception of dwarfs as subhuman, and thereby perpetuating a climate of ridicule. Opponents of dwarf-tossing contend that the tossing of some dwarfs implies the tossability of all dwarfs and point out that woman-tossing or even dog-tossing would not be allowed.
Some within LPA argue that it’s also humiliating for a dwarf to play an elf in the Radio City Christmas Spectacular. For many dwarfs, however, Radio City and similar venues are easy money, and dwarf actors point out that with few exceptions—most notably Peter Dinklage, who starred in The Station Agent and Death at a Funeral and won an Emmy for his role on the HBO series Game of Thrones—they are seldom hired for mainstream roles. One such actor said to me, “There’s an old Spanish proverb: I don’t care if people laugh at me as long as I keep warm.” The LP actor Mark Povinelli said, “When I first get a script, I flip through to see where I’m going to bite someone’s ankle or punch someone in the nethers or fight the tall guy.” In 2009, LPA banned the recruiters for Radio City from the conference. “My daughter did Radio City and she loved it,” one parent of a dwarf said. “She’s a pediatric oncology nurse. At no point in her life did she think she had to be an elf to make a living.” Joe Stramondo, chair of LPA’s advocacy committee and a doctoral candidate in bioethics at Michigan State University, said, “When people with dwarfism are portrayed negatively, they are usually portrayed by people with dwarfism. This complicates the issue.”
Stereotypes are persistent. On the NBC series Celebrity Apprentice, running back Herschel Walker was asked to make a viral ad about All detergent. “What about if we use little people and let them wash themselves in All detergent in the bathtub, and you hang them out to dry?” he said. Joan Rivers replied, “We can hang them out on my terrace.” Jimmy Korpai, father of a dwarf, argued that these celebrities were encouraging people to point and laugh at his daughter—a common occurrence for dwarfs, and one they find exhausting. Korpai said, “Imagine if I said what Herschel Walker did about a black person”; he filed a complaint with the FCC.
When the skeletons of what appeared to be a race of dwarfs were found on the island of Flores in Indonesia, Alexander Chancellor wrote in the Guardian about the shockingly dismissive tone that was used to describe them. “The reports in the media began by describing these ancient dwarfs as belonging to a ‘human’ species, but then proceeded to distance them from us modern humans as comprehensively as they could, referring to them as ‘things’ and ‘creatures,’ despite the fact that they apparently knew how to make stone implements, could light fires without matches, and organised hunting expeditions. These are achievements beyond the capacity of most people you see at the checkout counter.” Today, the Aka, Efé, and Mbuti of central Africa generally grow no taller than four feet ten inches. The word Pygmies, often used to describe them, has been designated an insult, but that may be the least of their problems: African Pygmies are often worked to death as slaves, have been the targets of attempted genocide, and have even been cannibalized by aggressors seeking “magical powers.”
A 2009 article by Lynn Harris on Salon about eliminating the word midget attracted extraordinary responses from what is in general an educated and refined readership. One wrote, “Deal with it. Grow a thick skin. Oh wait, that’s dwarves with the thick skin, isn’t it? I guess midgets have thin skin. Too bad. Sucks to be you.” Another said, “I wholly support any person or group of people informing me how they prefer to be referred to. However when those people tell me I MUST use only approved words my response is to tell them to kiss my ass.”
• • •
Anna Adelson was born at Beth Israel Hospital in New York in 1974, and when her parents, Betty and Saul, first saw her, they were filled with joy. Betty was able to hold Anna for a few minutes before she was taken away to be cleaned up. The next morning and afternoon, Betty couldn’t understand why the nurses wouldn’t bring the baby to her. She kept asking, and a nurse finally brought Anna in, but seemed to do so grudgingly. That evening, after Saul had gone home to be with their four-year-old son, David, the obstetrician came in to talk to Betty. “He said to me, ‘I think there’s a fifty-fifty chance she has Hurler’s syndrome, which results in retardation and early death,’” Betty recalled. “Then he left, and alone, I wept through the night.”
The next day, just before Betty and Saul went home with Anna, the hospital neonatologist told them that Anna had “something called achondroplasia.” He asked, “Are there any short people in your family?” Betty said, “Our grandparents came from Eastern Europe—we’ve got lots of short relatives.” The neonatologist said, “Anybody with sort of a large head?” Betty said, “Me. I wear big hats.” The neonatologist looked grim and said, “She will be short.” Betty asked, “How short?” He answered, “Under five feet.” He did not give any further information about the potential complications and neglected to mention that most women with achondroplasia are closer to four feet than five. Betty went to the medical library at NYU and read. She wrote to a second cousin who was a pediatric endocrinologist, who replied, “There are these organizations, the Human Growth Foundation and LPA. Many people in these groups have good lives. Your daughter will probably be less disturbed by this than you.”
When Betty and Saul went for walks in their Brooklyn neighborhood, Betty would feel tears welling up every time she noticed a disabled person. “You fight your battles in the world, but you close your door and there’s comfort,” she said. “Now there was no door to close. I wanted to meet another family with a dwarf child, and I wanted to meet a happy adult. I kept in constant motion until I found them. Then I began to breathe again.” When Anna was four months old, Betty and her family found their way to Johns Hopkins and to Dr. Steven Kopits. “He would pick up the baby and exclaim in his Hungarian accent, ‘What a beautiful baby you have!’ He told you everything you needed to know, and what you should look out for. He would write a long letter to your pediatrician at home and make an appointment for you to come back for a follow-up. When we went to Johns Hopkins, I knew the medical part could be dealt with.” When Kopits died in 2002, one mother of a diastrophic dwarf wrote, “I cried more at his funeral than I did for my own father.” The mother of an achondroplastic dwarf wrote, “Dr. Steven Kopits has to be the greatest man that I have met in my life.”
In the 1970s, the Moore Clinic at Johns Hopkins had an annual symposium for LPs and their families. Betty went to her first one when Anna was ten months old. “There were all these people in the pool—many with deformities I’d never seen before—adults and children of every shape and size,” she recalled. “In bathing suits! I would look anxiously, and stare, and embarrassed by my staring, I’d close my eyes. Then I’d look some more. Until it sunk in. By the end of the day they had names and they were people whom I knew. Thirty years later, a lot of them are my friends. I am deeper and better for it.”
Betty Adelson’s activist career began shortly thereafter. When Anna was five, a social worker at the Moore Clinic invited some parents of dwarf children to weekend seminars to prepare them to mentor other parents. Betty and Saul went and soon joined a couple of dozen other families who lived on the East Coast to form a group called Parents of Dwarf Children. Betty and three other mothers wrote to the hospitals and clinics in their areas so that as soon as a dwarf was born, they could invite the families to their homes and offer support. “We’d help with information and medical referrals—but perhaps most importantly, offered them relationships with others who’d traveled a similar path,” Betty said.
Betty was able to help many parents, but some resisted what she had to offer. She described speaking with a woman who had just learned in her seventh month that she was carrying a dwarf. “I said, ‘Look. It’s not a garden of roses, but there’s a great deal that’s fine.’ She didn’t call. So I called her the next day. She said, ‘We decided to have an abortion.’” Betty explained that some people in LPA were longing to adopt a dwarf child. The woman said, “It’s a second marriage for both my husband and me. We’re both very beautiful people. We like to ski; we’ve had troubles before; now our life with each other seems to be perfect. We don’t want to deal with something like this.” After Betty described this encounter to me, I asked, “Would you have considered an abortion if you had known early in your pregnancy that you were carrying a dwarf?” Her eyes filled with tears. “I hope not,” she said. “I really hope not.”
Betty was by then familiar with the impediments that parents of dwarf children encounter. But her Anna was lively and sociable. “I went to the local Montessori school,” Betty said. “She did everything she was supposed to. She held the gerbil and played with it; she separated from her mother; she drew.” The school said they couldn’t accept Anna because she might fall on the stairs. After a protracted exchange of letters, the director backed down; by then, however, the Adelsons had decided to enroll her at a nursery school attached to their local synagogue, where the director had said at an orientation meeting, “If your child has any special needs, please let us know, so that we can help!” Anna prospered there.
Anna has been a vegetarian since the age of twelve; she’s marched for reproductive rights, and she traveled to Pennsylvania to ring doorbells for Kerry and for Obama. In junior high, when her school didn’t want her to go on a ski trip, Anna organized friends to picket the headmaster’s office. Remembering the incident, Betty laughed. “So that’s my Anna. How could I not be glad of her?”
During adolescence, despite overall high achievement, Anna found it hard to concentrate on her studies. She then announced that she was gay. “She came out by calling me from college,” Betty said. “The next day I wrote her a long letter. I told her that what was most important to me was not whether she loved a man or a woman, but that she loved and was loved well—that she experience passion, and the wonderful surprise of finding that someone feels about you as strongly as you do about them, lucky and full-hearted. I knew how important my reaction would be to her and was glad that I could tell her honestly that I believed that same-sex love was just as true and legitimate as love between men and women.” Anna’s father and brother were equally affirming.
Anna’s acceptance of her dwarfism took longer than her grappling with her sexuality. She had stopped going to LPA events in early adolescence, feeling that the world of her average-size family and friends was sufficient, but despite some hesitancy, she returned when she was twenty-five. She soon became president of her local chapter and organized a “Difference within Difference” workshop at national conferences for those short-statured individuals who are set apart from the majority of LPs by race, religion, disability, or gender preference. At the 2004 conference in San Francisco, she initiated the first workshop and reception for LGBT attendees, a breakthrough for LPA, which has many conservative members. She has hosted this group at most of the conferences since.
When Anna was still a teenager, Betty decided to write two books—one for a popular audience and one for an academic audience—as a way of paying tribute to and celebrating the dwarfs she had come to know and love. Anna said the project was fine as long as it wasn’t a book about her. Several years later, after noticing the piles of folders all over her mother’s study, Anna surprised her mother with the present of a file cabinet tied up with a red ribbon, and a note that said, Get yourself organized, Mom! By the time the final drafts were being written, Anna was almost thirty and she acceded to her mother’s request to write about her. She is mentioned with great tact and love in the afterword of Betty’s invaluable The Lives of Dwarfs.
That book and Betty’s numerous academic articles have helped to organize dwarf history, identifying historical figures who may have been dwarfs and looking at evidence for the role of dwarfs from dynastic Egypt and ancient Greece up to the present. Much of this history is a narrative of suffering and abuse. Unusual bodies have been described throughout history as reflections of sin, as omens from the gods, as the basis for laughter or charity or punishment. Leviticus stipulates that only men with perfect bodies could become priests, a sign of the emphasis placed on the normative form from ancient times. “I looked for precedents for what I was doing,” Betty said. “Most of the earlier books had titles like Freaks or Victorian Grotesque or Human Oddities. I thought, there have been dwarfs for as long as there have been people, and what were they like? What were their lives? Until LPA was formed, few dwarfs knew each other except for the ones in entertainment, or, in earlier times, the ones sometimes gathered by kings and queens at court.”
For many years, Betty took a leadership role on LPA’s advocacy committee. In 2009, impressed by the enthusiasm of the new generation of dwarfs, she decided that it was time for her to pass the torch, and at the LPA conference banquet, the Executive Board conferred upon her the group’s 2009 Distinguished Service Award. Anna, who was by then living happily with her girlfriend a few blocks away from Betty and Saul, made a moving presentation.
“She loves and is loved well, as I had hoped,” Betty said. “If Anna had been average, would my world have been narrower? Yes. I recognize the gift that’s been given. If someone had said to me, ‘Betty, how’d you like to give birth to a lesbian dwarf?’ I wouldn’t have checked that box. But she is Anna, cornerstone of the family. I wish the road had not been so steep for her, but I’m so glad she managed to climb it with grace.”
• • •
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 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 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.
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.”
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?’ 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.”
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 naïve. 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.”
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 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.
• • •
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.”
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 III “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 so 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.” 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 in a van, driving on the 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.’”
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 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.”
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.”
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.
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 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 a 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.”
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.
Writing in the 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.”
• • •
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.”
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.”
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.”
• • •
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 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 Hastings Center Report, “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 (1743) to open his own 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.
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.
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, and of disparaging terms such as fall short of, comes up short, paltry, and puny. The use of dwarf as a verb—a disparaging one in most instances—does not help matters. William Safire once wrote in the 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.”
• • •
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.
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.”
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.”
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, how I have to say it as a mantra, one syllable, one beat. She is more brave 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.”
Excerpted from Far from the Tree: Parents, Children and the Search for Identity
by Andrew Solomon
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