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.”
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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.”
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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. El
Parents, Children and the Search for Identity
Far From the Tree
Parents, Children and the Search for Identity
All parenting turns on a crucial question: to what extent should parents accept their children for who they are, and to what extent they should help them become their best selves. Drawing on ten years of research and interviews with more than three hundred families, Solomon mines the eloquence of ordinary people facing extreme challenges.
Elegantly reported by a spectacularly original and compassionate thinker, Far from the Tree explores how people who love each other must struggle to accept each other—a theme in every family’s life.
Andrew Solomon discusses his audiobook FAR FROM THE TREE
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Winner of a 2012 National Book Critics Circle Award, Andrew Solomon’s Far from the Tree tells the stories of parents who not only learn to deal with their exceptional children but also find profound meaning in doing so. He writes about families coping with deafness, dwarfism, Down syndrome, autism, schizophrenia, multiple severe disabilities, with children who are prodigies, who are conceived in rape, who become criminals, who are transgender. While each of these characteristics is potentially isolating, the experience of difference within families is universal, and Solomon documents triumphs of love over prejudice in every chapter. Life for the parents in this book turns on a crucial question: to what extent should they accept their children as they are, and to what extent should they help them become their best selves? When, then, is their child’s condition an illness to be cured, and when is it an identity to be celebrated?
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1. In Far from the Tree, Andre see more
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