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 themsel
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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Reading Group Guide
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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