Solomon’s startling proposition in Far from the Tree is that being exceptional is at the core of the human condition—that difference is what unites us. He writes about families coping with deafness, dwarfism, Down syndrome, autism, schizophrenia, or 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.
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.
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About the Author
Andrew Solomon is a professor of psychology at Columbia University, president of PEN American Center, and a regular contributor to The New Yorker, NPR, and The New York Times Magazine. A lecturer and activist, he is the author of Far and Away: Essays from the Brink of Change: Seven Continents, Twenty-Five Years; the National Book Critics Circle Award-winner Far from the Tree: Parents, Children, and the Search for Identity, which has won thirty additional national awards; and The Noonday Demon; An Atlas of Depression, which won the 2001 National Book Award, was a finalist for the Pulitzer Prize, and has been published in twenty-four languages. He has also written a novel, A Stone Boat, which was a finalist for the Los Angeles Times First Fiction Award and The Irony Tower: Soviet Artists in a Time of Glasnost. His TED talks have been viewed over ten million times. He lives in New York and London and is a dual national. For more information, visit the author’s website at AndrewSolomon.com.
Read an Excerpt
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 two 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.
Table of Contents
I Son 1
II Deaf 49
III Dwarfs 115
IV Down Syndrome 169
V Autism 221
VI Schizophrenia 295
VII Disability 355
VIII Prodigies 405
IX Rape 477
X Crime 537
XI Transgender 599
XII Father 677
What People are Saying About This
In Far from the Tree, Andrew Solomon reminds us that nothing is more powerful in a child’s development than the love of a parent. This remarkable new book introduces us to mothers and fathers across America—many in circumstances the rest of us can hardly imagine—who are making their children feel special, no matter what challenges come their way.
Reading Group Guide
This reading group guide for Far from the Tree includes an introduction, discussion questions, ideas for enhancing your book club, and ideas for teachers. The suggested questions are intended to help your reading group find new and interesting angles and topics for your discussion. We hope that these ideas will enrich your conversation and increase your enjoyment of the book.
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?
Topics & Questions for Discussion
1. In Far from the Tree, Andrew Solomon tells the stories of dozens of parents raising children from across the spectrum of horizontal identities. Did any particular family remain etched in your memory?
2. Solomon describes how his reporting on deaf culture quickly challenged his assumption that deafness “was a deficit and nothing more” (P. 2). What did he discover? Were any of your own assumptions challenged by Far from the Tree?
3. On page 83 Solomon writes about visiting the village of Bengkala, Bali, where a congenital form of deafness has affected generations of residents. What struck Solomon about the way this community treated its deaf residents? Can we draw any lessons from Bengkala about the way we treat deaf people or those with other kinds of illnesses/identities?
4. One of the book’s recurring themes is the difficult decision parents face when a child could benefit from “corrective procedures” such as cochlear implants and limb-lengthening. At what stage in a person’s life do you think such interventions are appropriate? Should parents of young children be allowed to authorize such surgeries?
5. How has the Internet built community for people with horizontal identities?
6. Solomon notes that some dwarf couples use pre-natal testing to “screen out average size fetuses and ensure a dwarf child” (P. 156), and that some deaf people prefer to have deaf children. In contrast, Solomon describes “ever-increasing options to choose against having children with horizontal identities” for society at large (P. 6). He notes that most people who receive a prenatal diagnosis of Down syndrome choose to abort. What moral burdens come with the existence of these tests? What does it mean for any individual to seek out or to avoid prenatal testing?
7. Emily Perl Kingsley’s son Jason became a public face for Down syndrome but went on to struggle with depression. “I’ll admit that lower-functioning Down’s kids are happier, less obsessed with how unfair it is,” she tells Solomon. What do you think of Emily’s quest to make Jason “the highest-functioning DS kid in history?” (P. 178). How would you approach parenting a Down syndrome child?
8. From your reading of the book, how do you think socioeconomic status affects the way parents cope with children with horizontal identities?
9. Imagine that you are the parent of a severely autistic child or a child with multiple disabilities. What strategies would you adopt from the parents profiled here? Any you would avoid? Is there a formula for maintaining mental, emotional, and financial health when one must be a constant caregiver?
10. What do you think of Andrew Solomon’s decision to include chapters on the families of children conceived in rape, prodigies, and criminals alongside those chronicling people with disabilities?
11. Solomon is puzzled to find that among the schizophrenic people he meets “there was surprisingly little railing at the disease itself” (P. 296). How do people with this horizontal identity differ from many others in the book? Why is it “in a class by itself for unrewarding trauma?” Could society do more to alleviate this burden?
12. What do you think is the proper role for government in the realm of research and treatment for people struggling with horizontal illnesses or identities? Are some identities more deserving of public funds than others? Why or why not?
13. One of the book’s most unforgettable stories involves the girl known as Ashley X, whose parents, controversially, asked doctors to perform procedures that would attenuate her growth, to preserve a childlike “body that more closely matched her state of mental development.” Review Ashley X’s story (pp. 385-393). Did her parents make the right decision?
14. In what context is the word “genocide” used in identity movements? Is it justified?
15. Solomon writes that, “more than any other parents coping with exceptional children, women with rape-conceived children are trying to quell the darkness within themselves in order to give their progeny light” (p. 536). Did you find it harder to read about the choices these parents make than about those made by other parents in this book?
16. In the “Crime” chapter, Solomon writes, “Love is not only an intuition but also a skill.” What do you think he means here? What do you ultimately make of the theme of love that permeates the book?
17. “Most adults horizontal with identities do not want to be pitied or admired; they simply want to get on with their lives without being stared at” (p. 31). How do you treat people with a noticeable horizontal identity, such as Down syndrome. Do you shy away from contact? Do you find yourself curious? Give an honest assessment of yourself. Will you alter your behavior after reading Far from the Tree?
18. In his conclusion, Solomon writes that he used to see himself “as a historian of sadness,” but he ends Far from the Tree on a decidedly hopeful note, writing about his newfound joy in parenthood. What was your state of mind as you finished the book? How do you ultimately view the parents in these pages, as “heroic” or “fools?” (P. 702).
Enhance Your Book Club
1. Write the names of each horizontal identity Solomon discusses in Far from the Tree onto a small piece of paper and place them in a bowl. Have each member of your book club draw one and invite them to imagine being the parent of a child who possesses the identity noted on the slip. Go around the room, asking each member to envision the challenges and rewards of parenting such a child.
2. Do any members of your book group know someone with a horizontal identity discussed in the book, or a parent who has raised a child who is different? If you feel comfortable doing so, invite this person to join your meeting to speak about his or her life.
3. Solomon primarily interviewed American parents in researching Far from the Tree. Before the book club meeting, assign each member a populous nation, such as China, Russia, Pakistan, or Brazil, and ask the group to conduct online research into a current issue facing that country tied to horizontal identities. Ask each member to present their issue to the group.
4. Visit FarFromtheTree.com to meet a few of the families profiled in the book, see Andrew Solomon discussing the subjects and themes he explored in his writing, share your personal stories, and connect with other readers.
Ideas for Teachers
1. Solomon spent over a decade researching and writing Far from the Tree. He drew on “forty thousand pages of interview transcripts with more than three hundred families.” Have your students find someone who belongs to one of the horizontal identities in the book (or another identity not in the book) and interview that person or his or her parent or caregiver. Ask your students to write a reflection paper. What were the challenges mentioned by the subject of the interview? What was surprising? Did their findings correspond with what Andrew Solomon describes in Far from the Tree, or did the student discover unique information?
2. Solomon describes numerous difficult and controversial issues affecting groups in the book. Assign your students a paper in which they must research an issue, explore moral and ethical considerations, and take a position on it. Topics may include the following:
• cochlear implants for deaf people
• limb-lengthening for dwarfs
• insurance coverage for gender-reassignment surgery
• genetic screening during pregnancy
• institutionalization of the disabled
3. Social attitudes and government policy toward the disabled, the mentally ill, transgender people, rape survivors, and criminals have evolved throughout modern history. Assign students to small groups and direct them to research how people in a horizontal identity category have been treated throughout history. Ask the students to assess whether attitudes today have improved over past conditions. Students can create a timeline of important events and people connected to their issue and present it to the class.