Far from the Tree: Young Adult Edition--How Children and Their Parents Learn to Accept One Another . . . Our Differences Unite Us
464
Far from the Tree: Young Adult Edition--How Children and Their Parents Learn to Accept One Another . . . Our Differences Unite Us
464Hardcover
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Overview
The old adage says that the apple doesn’t fall far from the tree, meaning that children usually resemble their parents. But what happens when the apples fall somewhere else—sometimes a couple of orchards away, sometimes on the other side of the world?
In this young adult edition, Andrew Solomon profiles how families accommodate children who have a variety of differences: families of people who are deaf, who are dwarfs, who have Down syndrome, who have autism, who have schizophrenia, who have multiple severe disabilities, who are prodigies, who commit crimes, and more.
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. The New York Times calls the adult edition a “wise and beautiful” volume, that “will shake up your preconceptions and leave you in a better place.”
Product Details
| ISBN-13: | 9781481440905 |
|---|---|
| Publisher: | Simon & Schuster Books For Young Readers |
| Publication date: | 07/25/2017 |
| Pages: | 464 |
| Product dimensions: | 5.50(w) x 8.30(h) x 1.60(d) |
| Age Range: | 14 - 17 Years |
About the Author
Laurie Calkhoven is the author of many books, including George Washington: An American Life and Harriet Tubman: Leading the Way to Freedom. She lives in New York City. Visit her at LaurieCalkhoven.com.
Read an Excerpt
Far from the Tree
I HAD DYSLEXIA AS A child; indeed, I have it now. I still cannot write by hand without focusing on each letter as I form it, and even then, some letters are out of order, or left out entirely. My mother saw this early on and began to work on reading with me when I was two. I spent long afternoons on her lap, learning to sound out words. We practiced letters as though no shapes could ever be lovelier than theirs. To keep my attention, she gave me a notebook with a yellow felt cover on which Winnie-the-Pooh and Tigger were sewn. We made flash cards and played games with them. I loved the attention, and my mother brought a sense of fun to her teaching.
When I was six, my parents applied to eleven schools in New York City, and all eleven turned me down. Despite my advanced reading skills, my test scores said I would never learn to read and write. Only a year later did the principal of one school overrule the exam results so that I could be enrolled.
That early victory over dyslexia taught my family that with patience, love, intelligence, and will, we could defeat a neurological abnormality. Unfortunately, it also set the stage for our later struggle. It made it hard to believe that we couldn’t correct something else that was perceived as abnormal—my being gay.
• • •
People ask when I knew I was gay, and I wonder what that means. Recent studies have shown that as early as age two, many boys who will grow up to be gay avoid some rough-and-tumble play. By age six, a good number behave in some ways that aren’t typical “boy.” I knew that many things I liked were unmasculine: I never traded a baseball card, but instead shared the plots of operas on the school bus, which did not make me popular.
I was popular at home, but I was also corrected. Once, when I was about seven, I was leaving a shoe store with my mother and brother, and the salesman asked us what color balloons we’d like to take home. My brother wanted a red balloon. I wanted a pink one. My mother said that I did not want a pink balloon. She announced, over my protests, that my favorite color was blue, so I ended up taking a blue balloon. The fact that in adulthood my favorite color is blue stands as evidence of my mother’s influence; the fact that I am still gay is evidence of its limits.
Though it was supposed to be integrated, my grade-school class actually included only a few black and Latino kids, and they mostly socialized with one another. My first year at school was second grade, and when Debbie Camacho had a birthday party in Spanish Harlem, my mother made me go. I was one of only two white kids who went, out of a class of forty; none of my friends was there and I was terrified. Debbie’s cousins tried to get me to dance. Everyone spoke Spanish, the food was unfamiliar, and I had a kind of panic attack and went home in tears.
I didn’t see the parallels between everyone else’s avoidance of Debbie’s party and my own unpopularity. It never occurred to me that she and I had anything in common. It was only years later that I understood why my mother had made me go, and recognized that it was a moral issue. Then I was glad to have been there: It was the right thing to do. Debbie’s party was the beginning of my tolerance toward people who were different from me, and that attitude ultimately helped me understand that I was okay even though I was different.
A few months after Debbie’s party, Bobby Finkel had a birthday and invited everyone in the class but me. My mother called his mother, sure that there had been a mistake. Mrs. Finkel said that Bobby didn’t like me and didn’t want me there. My mother picked me up after school on the day of the party and took me to the zoo and out for a hot fudge sundae. Now I can see how hurt my mother must have been for me—more hurt than I was, or let myself notice I was. She knew that being different had sad consequences, and she wanted to protect me.
Making me choose the blue balloon had been partly an effort to shelter me and partly an act of aggression. In many ways, my mother encouraged me to be myself, and she made me believe I could be loved for who I was rather than for who the larger world suggested I should be. But at the same time, she wanted to change me in ways that I couldn’t be changed. That made me angry; it still does. The hardest thing to make sense of was the fact that the love was real even though it coincided with the rejection of a central part of me.
I floundered in the tricky waters of elementary school, but at home, away from the cruelty, my quirks were mostly humored. When I was ten, I became fascinated by the tiny European country of Liechtenstein. A year later my father took us along on a business trip to Switzerland, and one morning my mother announced that she’d arranged for us all to drive to Liechtenstein. The same mother who forbade the pink balloon took us to lunch in a charming café, on a tour of the art museum, and to visit the printing office where they made the country’s gorgeous postage stamps, just to indulge my weird fascination.
Still, there were limits, and pink balloons fell on the wrong side of them. My parents’ rule was to be interested in others from within a pact of sameness. I wanted to do more than just be interested in the whole world: I wanted to be a part of it. I wanted to dive for pearls, memorize Shakespeare, break the sound barrier. Maybe I wanted to transform myself because I wanted to break away from my family’s way of being. Maybe I was already trying to get closer to who I wanted to become.
• • •
In 1993, I was assigned to investigate Deaf culture for the New York Times. I thought of deafness as a defect. Most deaf children are born to hearing parents—parents who often think deafness is a tragedy, and throw themselves into making sure their deaf children learn to speak and read lips. Teaching those skills usually takes so much time and energy that parents neglect other areas of their children’s education. Some deaf people become very good at speech and lip-reading over time, but at the expense of learning history and math, and they end up fairly uneducated.
Some kids stumble upon Deaf identity as teenagers, and it makes them feel free and powerful. They move into a world that uses Sign as a language and they become proud of the same things about themselves that used to embarrass their parents. Some hearing parents accept this confident new identity, but others struggle against it.
I understood this complex process of self-discovery because I am gay. Gay people usually grow up with straight parents, who often believe that their children would be better off straight. Frequently, they pressure their kids to be or act straight. These kids discover gay identity as teenagers or later, and it comes as a huge relief. So the line between illness (the negative way of looking at a condition) and identity (the positive way of looking at it) is never clear. Something you start out considering as an illness can become a cornerstone of your identity. Also, what some people think of as an illness, others think of as an identity. And the same attribute can be defined as an illness at one time, then in a different historical time it can change to an identity. Sometimes, it can be an identity and an illness at the same time, even for the person who has the condition.
When I started writing about the deaf, the surgical insertion of a device called a cochlear implant, which can offer something similar to hearing, was a recent innovation. Its supporters said it was a miracle cure for a terrible defect. The Deaf community saw it as an attack on their culture. The issue is complicated by the fact that cochlear implants are most successful when they are introduced in infants, meaning that the decision is made by parents before the child can possibly weigh in with an opinion.
My parents would have said yes to a childhood operation that would have made me straight. If such a process is ever invented, I think most of gay culture would be wiped out within a generation. That thought makes me terribly sad.
But it has taken time for me to value my own life. I, too, once wished to be straight. While I have come to understand the richness of Deaf culture, I know that before I did this research, I would have assumed that the only thing to do for a deaf child would be to fix the abnormality.
A few years after I began spending time in the Deaf community, a friend gave birth to a daughter who was a dwarf, and she had a lot of questions. Should she raise her daughter to believe that she was just like everyone else, only shorter? Or should she make sure that her daughter had dwarf role models and developed a dwarf identity? Or should she consider surgery to lengthen her daughter’s limbs? I saw a pattern that was becoming familiar.
First I had found common ground with the Deaf, and now I felt the same way about a dwarf. Who else was out there waiting to join us kids who were different, and whose parents had a hard time figuring out what to do about it?
• • •
Because genes and cultural habits get passed down from one generation to the next, most of us share at least some traits with our parents. These are vertical identities, like the trunk of the family tree. Ethnicity, for example, is a vertical identity. Children of color are born to parents of color. Language is usually vertical, since people who speak Greek as a first language usually raise their children to speak Greek too, even if those children also speak another language some of the time. Nationality is vertical, except for immigrants. Nearsightedness and blond hair are often passed from parent to child, but neither one is an important basis for identity—nearsightedness because it is easily corrected, and blond hair because what’s in style shifts all the time, and besides, you can change your hair color easily, many times over.
But what happens when something about you is so completely alien to your parents that you have to learn your identity outside of your family? This is a horizontal identity, one that does not show up on the intergenerational family tree. These identities can come from a recessive gene, a random genetic mutation, or values and preferences that you don’t share with your parents. Being gay is a horizontal identity because most gay kids are not born to gay parents. They need to learn about being gay by observing and taking part in a subculture. Physical disabilities and genius are both usually horizontal identities. Mental illness is also usually horizontal. So are conditions such as autism and intellectual disabilities. Even being a psychopath is a horizontal identity. Most criminals weren’t raised by gang members; they have to invent their own identity outside of their families.
In the twenty-first-century United States, it is sometimes still hard to be black or Asian or Jewish or female, but no one suggests that all people should try to turn themselves into white Christian men. Many vertical identities make people uncomfortable, and yet we don’t try to eliminate them. Instead, over time, we recognize the flaws in our society that have made these conditions difficult for the people who have them. We try to fix the society, not to change the Asians or Jews or women or African-Americans. Parents teach these children a sense of pride about who they are, even when the larger society is divided by prejudice.
The disadvantages of being gay are no greater than those of believing in a minority religion, but many parents have long tried to turn their gay children straight. Many parents also rush to make certain kinds of physical differences “normal.” Some children’s minds are labeled as diseased—with autism, intellectual disabilities, or transgenderism—in part because those minds make their parents uncomfortable. Things get corrected that would be better left alone.
• • •
My parents misunderstood who I was, and I have come to believe that all parents sometimes misunderstand the core nature of their own children. Many parents see a child’s horizontal identity as an insult. Those same children are also different from most of their peers. They’re not accepted at home or in the world. Families tend to support and encourage vertical identities. Horizontal ones, however, are often treated as failings.
We use the word illness to criticize a way of being, and identity to validate a way of being. Many conditions can be viewed as both an illness and an identity. Just as in physics, where we’ve learned that energy is sometimes a wave and sometimes a particle, we need to come up with a new vocabulary for conditions that can be both illness and identity.
I thought that if the identity of being gay could grow out of homosexuality, which used to be considered an illness; and if the identity of Deafness could grow out of deafness, which has been widely considered a disability; and if the identity of dwarfism could emerge from what was considered an apparent deformity, then there must be other categories in this awkward in-between territory. Instead of being in a marginal minority, I was suddenly in vast company. Each of these experiences—deafness, gayness, and dwarfism, among many others—can isolate those who are affected, but together our struggles and differences connect us. Everybody is different in one way or another. It’s the one thing we all have in common.
The children I describe in this book have horizontal conditions that their parents find strange and alien. They are deaf or dwarfs; they have Down syndrome, autism, schizophrenia, or severe disabilities; they are prodigies; they are people born out of rape, or people who commit crimes; they are transgender.
There’s an old saying that the apple doesn’t fall far from the tree, meaning children tend to be like their parents. The children in this book are apples that have fallen elsewhere—some a couple of orchards away, some on the other side of the world. Yet many of these children learn to embrace their horizontal identities, and help their families to tolerate, accept, and even celebrate them.
All children are startling to their parents. I have yet to meet any parent who doesn’t sometimes look at his or her child and think, “What planet did you come from?” I’ve yet to meet a child who hasn’t sometimes wondered the same thing about his or her parents. So these dramatic situations expand on a theme. By learning more about exceptional cases, we can start to understand the universal phenomenon of difference within families.
You need three levels of acceptance: self-acceptance, family acceptance, and acceptance by the larger society. It’s important to know how autistic people feel about autism, or dwarfs about dwarfism. Self-acceptance is critical. But compassion and empathy begin at home. Most of the parents and children I have written about love one another across the divide of their differences. When they look deep into their child’s eyes, parents can see both a reflection of themselves and someone entirely strange, and still love their child completely. Children can look back and feel the same combination of reassuring sameness, confusing differences, and overpowering love. The society at large will often take its cues from the family and the self. There is more imagination in the world than one might think.
• • •
Most kids want to be like other kids. That was never true for me. Even in kindergarten, I spent recess talking to my teachers because other children didn’t get what I was about. By seventh grade I was eating lunch in the office of the principal’s secretary. I graduated from high school without once visiting the cafeteria, where I would have sat with the girls and been laughed at for doing so, or sat with the boys and been laughed at for being the kind of boy who should really sit with the girls. I liked being different, so when I began to realize my sexual desires were even more forbidden than most kids’, I was thrilled by my own exotic nature. I was also horrified by it; I thought if anyone found out I was gay, I would have to die.
At the top of my list of people I didn’t want to find out were my parents—who had communicated a clear message to me about “being a boy” ever since the time of the pink balloon. As an adult, I can understand that my mother didn’t want me to be gay partly because she thought it wouldn’t be a happy kind of life for me. She also didn’t like to think of herself as the mother of a gay son. The problem wasn’t that she wanted to control my life, but that she wanted to control her life. But there was no way for her to fix her problem of having a gay son without involving me.
Although being gay was a horizontal identity, my discomfort with myself was an inclination I inherited from my mother. My mother was Jewish (a vertical identity) but initially at least, she didn’t want to be. She had learned that attitude from her own father, who kept his religion a secret so he could hold a job at a company and belong to a country club where Jews were not allowed. In her early twenties, my mother was briefly engaged to a man who broke it off when his family threatened to disinherit him if he married a Jew. Five years later my mother chose to marry my Jewish father and live in a mostly Jewish world, but she carried her lifelong experience of anti-Semitism within her. When she saw people who fit certain Jewish stereotypes, she would say, “Those are the people who give us a bad name.” She once said that a girl in my ninth-grade class who was considered a beauty looked “very Jewish.” It wasn’t intended as a compliment.
Like my mother, I carried a need to deny my own identity. Long after childhood, I hung onto childish things. I was immature and prudish as a means to obliterate my sexual desires. I had an idea that I could be Christopher Robin forever in the Hundred-Acre Wood. The last book in the Winnie-the-Pooh series, The House at Pooh Corner, ends, “Wherever they go, and whatever happens to them on the way, in that enchanted place on the top of the Forest, a little boy and his Bear will always be playing.”
I decided I would be that boy with the bear, because what growing up meant for me was humiliating. At thirteen I bought a copy of Playboy and studied it for hours. I wanted to be more comfortable with women’s bodies, but it was much harder than my homework. I wanted a normal life and a family one day, and by the time I reached high school I knew that to achieve that, I’d have to have sex with a woman. I didn’t think I could bring myself to do so. I thought often about dying. The half of me that wasn’t planning to be Christopher Robin was planning to throw myself in front of a train.
When I was in eighth grade at the Horace Mann School in New York, an older kid nicknamed me Percy. This was long before Percy Jackson came along and made the name Percy cool; at the time, it sounded both feminine and weirdly old-fashioned. That guy and I were on the same school-bus route, and each day when I boarded, he and his friends would chant, “Percy! Percy! Percy!” Sometimes everyone on the bus chanted at the top of their lungs for the entire forty-five minutes. I sat there pretending that it wasn’t happening.
Four months after it began, I came home one day and my mother asked if anything had been happening on the school bus. A boy had told his mother, who had called mine. When I admitted it, my mother hugged me for a long time and asked me why I hadn’t told her. That had never occurred to me, partly because talking about something so embarrassing would only make it more real, partly because I thought there was nothing to be done about it, and partly because I felt that the things the other kids found so disgusting about me would also be disgusting to her.
A chaperone rode the school bus after that, and the chanting stopped. Instead I was called “faggot” on the bus and at school, often within hearing of teachers who said nothing. Homophobia was everywhere when I was growing up, and my school delivered a sharply polished version of it.
In June of 2012, the New York Times Magazine published an article about some male faculty members who had sexually abused boys at the school while I was student there. The article quoted students who later developed addictions and other self-destructive behavior, which they believed was a result of the abuse. One had committed suicide. When I was in ninth grade, the art teacher, who was also a football coach, kept trying to talk to me about masturbation. I thought it might be a trick, and that if I responded, he’d tell everyone I was gay. No other faculty member ever made a move on me—perhaps because I was a skinny, awkward kid with glasses and braces, perhaps because my parents had a reputation of being fiercely protective, perhaps because of the false arrogance with which I tried to protect myself from everyone else.
The article made me sad and confused. Some of the teachers accused of the abuse had been especially kind to me. My eighth-grade history teacher had taken me out to dinner, given me a copy of the Jerusalem Bible, and talked with me during free periods. The music teacher had awarded me concert solos, let me call him by his first name and hang out in his office, and led the glee-club trips that were among my happiest adventures. These men seemed to recognize who I was and thought well of me anyway. Their unspoken acknowledgment of my sexuality helped me avoid becoming an addict or a suicide. But their behavior toward others had been horribly destructive.
The art teacher was fired soon after my conversations with him. The history teacher was let go and committed suicide a year later. The music teacher, who was married, survived when many gay teachers were fired, only to have his reputation destroyed after he died. Other gay teachers, innocent ones, were fired because the school was trying to root out pedophilia, which they falsely equated with homosexuality. The larger school community supported prejudice against gay people in the mistaken belief that gay people were child abusers. It was a terrifying place to be as a gay teen; if anyone found out, I thought, I would be not only a social outcast, but also unemployable for the rest of my life.
The head of the theater department, Anne MacKay, was a lesbian who survived the firings, which targeted gay men. Twenty years after I graduated, we started to e-mail each other. When I learned that she was dying, I went to visit her. Miss MacKay had been the wise teacher who once explained gently that I was teased because of how I walked, and tried to show me a more confident and masculine stride. I had come to thank her. But she had invited me so she could apologize. She felt as if she had failed the gay students to whom she might have been a beacon. We both knew, though, that if she had been more open back then, she would have lost her job.
When I was in high school, I knew she was gay, and she knew I was gay, yet we were never able to talk about it. Seeing her after so many years stirred up an old loneliness. It reminded me of how isolating an exceptional characteristic can be unless we find a way to turn it into a horizontal identity through solidarity with other people like us.
• • •
There are a lot of sexual opportunities available to young people, especially in New York, where I grew up. One of my chores was to walk our dog before bedtime. When I was fourteen, I discovered two gay bars near our apartment. I would walk Martha, our Kerry Blue Terrier, on a circuit that included both of those bars, watching the guys spill out onto the street while Martha tugged on her leash. When I eventually had sex with a man, at seventeen, I felt that I was cutting myself off forever from the normal world. I went home and boiled my clothes, then took a scalding hour-long shower.
When I was nineteen, I read an ad in the back of New York magazine that offered therapy for people who had issues with sex. I knew the back of a magazine wasn’t a good place to find treatment, but I was too embarrassed to reveal my problem to anyone who knew me.
So I took my savings to an office in the Hell’s Kitchen neighborhood and had long conversations about my sexual anxieties without telling the so-called therapist that I wasn’t interested in women. I also didn’t mention the busy sexual life I had by that time with men. I began “counseling” with people I was told to call “doctors,” who prescribed “exercises” with women. These women weren’t exactly prostitutes, but they weren’t exactly anything else.
I wasn’t cured of being gay, but I did eventually recover from the idea that I had an illness. That office on West 45th Street still shows up in my dreams. My treatment took only two hours a week for about six months, and it made it possible for me to have heterosexual experiences that I’m glad to have had. I’ve truly loved some of the women with whom I’ve had relationships, but I was never able to forget that the “cure” that helped me be with them was all about hating myself. The pressure that led me to make the effort to turn myself straight made romantic love almost impossible for me during my early adulthood. I was either inauthentic with women, or self-loathing with men.
My interest in the differences between parents and children grew out of my need to understand the central despair that cast such a long shadow over my otherwise-happy life. While I’d like to blame my parents, I have come to believe that a lot of my pain came from the world around me, and some of it even came from me. In the heat of an argument, my mother once told me, “Someday you can go to a therapist and tell him all about how your terrible mother ruined your life. But it will be your ruined life you’re talking about. So make a life for yourself in which you can feel happy, and in which you can love and be loved, because that’s what’s actually important.”
You can love someone but not accept that person. You can accept someone but not love him or her. I wrongly saw the flaws in my parents’ acceptance of me as proof that they didn’t love me enough. Now I think their experience felt like having a child who spoke a language they’d never thought of studying. Love is ideally there from the second a child is born. Most parents love their children. Acceptance, however, is a process, and it takes time. It always takes time, even when your child doesn’t have a particularly challenging, alien identity. My parents didn’t immediately accept me, but they always loved me. I can see that now. But until they accepted me, I didn’t know if or when they would do so, and that caused me a lot of anguish. It made it much harder for me to accept myself.
How are parents to know whether to erase or celebrate one of their child’s characteristics? When I was born, homosexual activity was a crime. During my childhood, it was also defined as a symptom of illness. It was certainly not something to be encouraged. Now that I’m an adult, being gay is an identity, and I’m pretty happy. The tragic life my parents feared I might have when I asked for the pink balloon turned out not to be the only possibility. Yet, the view of homosexuality as a crime, an illness, and a sin is still held by millions of people. Working on this book, I sometimes felt it was easier for me to ask people about their disabled children, their children conceived in rape, and their children who committed crimes, than it would have been to look at how many parents still respond negatively to having gay children.
If we develop prenatal tests for homosexuality, how many couples will choose to abort their gay children? If we develop a drug that can be used to prevent homosexuality in unborn children, how many parents will be willing to try it? Ten years ago, in a New Yorker poll of parents, one out of three said they would rather have an unhappy straight child than a happy gay one. You can’t hate a horizontal identity much more explicitly than to wish unhappiness for your children as a reasonable price of being sure they won’t be different from you. Self-acceptance is only part of the struggle. So is acceptance by the larger society. Family is the one in the middle, the one that translates between the individual and the society, and for that reason it is especially powerful. All three goals can feel very elusive. So what do we do with the kind of feelings revealed in the New Yorker poll?
I would hate to see my horizontal identity vanish. I would hate it for those who share my identity, and for those who don’t. I hate the loss of diversity in the world, even though I sometimes get tired of embodying that diversity. I don’t wish for anyone in particular to be gay, but the idea of no one being gay makes me miss myself already.
While I might have had an easier life if I had been straight, without my struggles I wouldn’t be me, and I like being myself better than I like the idea of being someone else. I have wondered whether I could have stopped hating my sexual orientation earlier without the over-the-top aspects of Gay Pride: the “dykes on bikes” and drag queens who I used to think gave us a bad name. A friend who thought Gay Pride was getting a bit carried away with itself once suggested we organize Gay Humility Week. It’s a good idea, but its time has not yet come. Nonetheless being able to celebrate myself within gay culture makes up for all the years of self-loathing. Someday I hope being gay will turn into a neutral fact, but that’s some way off. Neutrality, which appears to lie halfway between shame and rejoicing, is the endgame. We’ll know we’ve reached it when activism becomes unnecessary.
It is a surprise to me to like myself. Among all the possibilities I contemplated for my future, that one never came up. In the Gnostic Gospel of Thomas, Jesus says, “If you bring forth what is within you, what is within you will save you. If you do not bring forth what is within you, what is within you will destroy you.” Jesus’s words embrace those of us with horizontal identities. Keeping my gayness locked away nearly destroyed me. Bringing it forth has helped save me.
• • •
Modern love comes with more and more options. For most of history, people married members of the opposite sex, and only from their own class, race, religion, and community. People were also supposed to accept the children born to them because one could do little to choose or change them. Physical and social mobility have altered that logic. Birth control introduced greater choice into having children. So did modern fertility treatments. Now, parents can decide whether to initiate, continue, or terminate a pregnancy based on embryo analysis and prenatal testing.
Reports of infants thrown away in dumpsters or abandoned to foster care show that humans have the ability to detach themselves emotionally. Oddly, this abandonment seems to have as much to do with an infant’s appearance as with its health or character. Parents will usually take home a child with a life-threatening internal defect, but often enough, not one with a minor visible defect. Obvious disabilities can offend parents’ pride and their need for privacy. Everyone can see that this child isn’t the one you wanted. Parents expect doctors to fix all kind of problems that aren’t life-threatening. Short kids are given human growth hormones. Cleft palates are repaired. We are eliminating some of the variety within mankind.
Yet, while modern medicine can make us more uniform in trivial ways, we have become more far-flung in our desires and our ways of realizing them. The Internet allows anyone to find others who share his or her quirks or differences. Twenty-five years ago, if your child had primordial dwarfism, you might have had trouble finding anyone else who shared that rare condition; today, you can type the words into Google and find a worldwide community. These online support systems are vital as the lines between illness and identity are challenged and we allow our true selves to emerge.
Modern life is lonely in many ways, but everyone with access to a computer can find like-minded people. Vertical families are breaking down, especially in divorce, but horizontal ones are flourishing. If you can figure out who you are, you can find other people who are the same. Social progress is making disabling conditions easier to live with.
• • •
Some vertical identities, such as schizophrenia and Down syndrome, are thought to be entirely genetic. Others, such as being transgender, are thought to be largely a result of the environment in which the fetus develops or the child is raised. Nature and nurture are believed to be opposing forces, but more often it is nature via nurture, not nature versus nurture. Environmental factors can alter the brain. Conversely, brain chemistry and structure partly determine how we are affected by the world around us.
Even though nature and nurture are intertwined, it is easier for parents to tolerate syndromes assigned to nature. If your child has dwarfism, no one will accuse you of bad behavior for having produced such a child. However, a child’s success in accepting his or her dwarfism and valuing his or her own life may be mainly a function of nurture. If you have a child who has committed serious crimes, it is often assumed that you did something wrong as a parent. But there is increasing evidence that some criminality may be hardwired in the brain, and that even the most nurturing parents cannot necessarily sway a child who is predisposed to gruesome acts.
The social perception of whether any supposed deficit is the parents’ fault is a critical factor in the experience of both children and parents. Blaming the parents stems from ignorance, but it also reflects our belief that we control our own destinies and those of our children. Unfortunately, that belief does not save anyone’s children; it only destroys some parents, who crumble under society’s criticism or blame themselves. There is no contradiction between loving someone and feeling burdened by that person. No one loves without reservation. We would all be better off if we could stop disapproving of parental ambivalence. All that children can require of their parents is that they neither insist on perfect happiness nor lapse into the brutality of giving up. These parents need space to feel ambivalent. For those who love, there should be no shame in being exhausted—even in imagining another life than the one they have.
• • •
My study is of families who accept their children, and how that acceptance relates to those children’s self-identity. In turn, it looks at how the acceptance of the larger society affects both these children and their families. Our parents are metaphors for ourselves: we struggle for their acceptance as a displaced way of struggling to accept ourselves. Our society is likewise a metaphor for our parents: Our quest for esteem in the larger world is a manifestation of our wish for parental love.
Social movements have come in sequence. First came religious freedom, followed by women’s suffrage and minority race rights. Gay liberation and disability rights ensued. The women’s movement and the civil rights movement were focused on vertical identities, so they gained traction before the movements on behalf of those with horizontal identities. Each movement borrows from the ones that came before.
Preindustrial societies could be cruel to people who were different, but they did not hide them away. Postindustrial societies put the disabled in institutions. That set the stage for eugenics, the belief in scientifically “improving” the human population by preventing “defective” people from reproducing. Hitler murdered more than 270,000 people with disabilities on the grounds that they were “travesties of human form and spirit.” Hitler wasn’t alone. Laws to permit involuntary sterilization and abortion were passed in Finland, Denmark, Switzerland, and Japan, as well as in twenty-five American states.
The disability rights movement, at the most basic level, seeks to accommodate difference rather than erase it. One of its successes is to understand that the interests of children, parents, and society are not the same, and that disabled children are the least able to defend themselves. In spite of persisting challenges, the disability rights movement has made tremendous strides: social progress. At the same time, scientific advances allow parents to avoid having certain kinds of disabled children: medical progress. Some disabilities might be eliminated completely.
It’s not easy to know where to draw the line. There are treatments for many of the conditions I investigated that can erase them to some degree. Most deaf children can get implants that let them hear, more or less. A drug to block the action of the gene that causes most dwarfism is being tested. Is selective abortion the first step in a campaign to eliminate people with disabilities? That might not be the aim of parents, but medical advances could reduce the disabled population by great numbers. I believe in social progress and medical progress, but I wish they were more awake to each other. Sometimes scientists don’t understand that there are people who would prefer not to be cured—just as I wouldn’t want, at this point, to be cured of being gay.
Repairing people’s bodies and repairing social prejudices are goals that sometimes get tangled up in troubling ways. A repaired body may have been achieved through surgical trauma. A partially repaired prejudice can eliminate the basis for civil rights that its existence called into being by making people question the special protections that victims of prejudice often enjoy. If you have the disability of dwarfism, public accommodations need to be made; if you’re just short, it’s your own problem. Disabled people are protected by fragile laws. If they are judged to have an identity rather than an illness, they may lose those protections.
Although we have moved in recent years away from illness models and toward identity models, such a shift is not always a good thing. After I had come to see Deafness and dwarfism and autism and transgenderism as identities worthy of appreciation, I came upon the pro-ana and pro-mia movements, which seek to remove the negative associations around the eating disorders of anorexia and bulimia. Anorexia has the highest mortality rate of any mental illness. To propose that anorexics and bulimics are simply pursuing an identity is as morally questionable as accepting the belief that gang members are merely pursuing an identity that happens to include killing people. It’s clear that there are boundaries to the concept of identity. It’s not clear where those boundaries lie.
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Over ten years I interviewed more than three hundred families for this book. A child’s traumatic origins (rape) or traumatic acts (crime) can have surprising parallels to the conditions of the mind (autism, schizophrenia) or of the body (dwarfism, deafness, multiple severe disabilities), or of both (Down syndrome, transgenderism). I wanted to show that raising and/or being a child with extraordinary abilities (prodigies) is in some ways like raising and/or being a child with reduced capacities.
Each of these chapters poses a particular set of questions, and taken together, they show us the issues faced by children with horizontal identities and their families.
I had to learn a great deal to be able to hear these children and their mothers and fathers. On my first day at my first dwarf convention, I went over to a teenage girl who was sobbing. “This is what I look like,” she blurted, half laughing and half crying. “These people look like me.” Her mother, who was standing nearby, said, “You don’t know what this means to my daughter. But it also means a lot to me, to meet these other parents who will know what I’m talking about.”
Many of the worlds I visited had such a rewarding sense of community that I felt a startling desire to belong to them. I remember walking into a meeting of the National Association of the Deaf and thinking, “I wish I were Deaf.” That’s not to say that I wished I couldn’t hear. I make use of my hearing all the time and I’m very attached to it. But I saw the intimacy and humor shared by all these men and women who had conversations flying from their moving hands, and I wanted to be part of the excitement among them. I do not want to make light of the difficulty of these horizontal identities, but I knew about that going in. What I did not know about or expect was all the joy.
Many of the people I interviewed said that they would never exchange their experiences for any other life. Having a severe challenge intensifies life for both children and parents. The lows are almost always very low; the highs are sometimes very high. Those who believe their suffering has been valuable are able to love more freely than those who see no meaning in their pain.
The world is made more interesting by having every sort of person in it. That is a social vision. We should alleviate the suffering of each individual to the outer limits of our abilities. That is a humanist vision with medical overtones. Some people think that without suffering, the world would be boring. Some think that without their own suffering, the world would be boring. Life is enriched by difficulty. But it is not suffering that is precious. The advantages are achieved in the ways we think about that suffering. Suffering will never be in short supply. The trick is making something exalted out of it.
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The question I was most frequently asked about this project was which of these conditions was the worst. Difference and disability seem to invite people to step back and judge. Parents judge which lives are worth living, and worth their living with; activists judge those parents for doing so; doctors judge which lives to save; politicians judge how much accommodation people with special needs deserve.
The tendency to make negative judgments is not confined to people in the mainstream. Almost everyone I interviewed for any chapter in this book was put off by some of the other chapters. Deaf people didn’t want to be compared to schizophrenics. Criminals couldn’t stand the idea that they might have something in common with transgender people. Prodigies and their families objected to being in a book with the severely disabled.
One mother who spoke freely to me about her teenager’s autism only reluctantly told me that he was also transgender. The mother of a transman admitted that her son was on the autism spectrum only after I knew her very well. Where people feel pride and where they feel shame can be surprisingly variable.
We needed the multiculturalism that all the different identities claimed as an antidote to the melting pot of assimilation, where everyone had to conform to a single ideal. Now it’s time for the little provinces of multiculturalism to find their collective strength. Our differences unite us. Intersectionality is the theory that various kinds of oppression feed on one another—that you cannot eliminate sexism, for example, without addressing racism. If we tolerate prejudice toward any group, we tolerate it toward all groups.
In 2011, gay marriage became legal in New York State after several Republicans in the State Senate agreed to support it. One of them, Roy J. McDonald, said that he had changed his stance on gay marriage because he had two autistic grandchildren, which had caused him “to rethink several issues.” Each piece of the battle for broader recognition of one identity strengthens the others. The American poet Emma Lazarus said, “Until we are all free, we are none of us free.” This book is about how we work together for that collective freedom. I encountered activists of every stripe while I did this research. The changes they sought seemed, individually, restricted to their own experiences with horizontal identities, but as a group they represent a rethinking of all humanity.
Some parents want to spur social change. Others use activism to distract themselves from grief, or because it gets them out of the house. Just as belief can result in action, action can result in belief. Parents can gradually fall in love with their children and with their children’s disabilities, and by extension with all the world’s disadvantages. Many of the activists I met were determined to help other people because they could not initially help themselves. By teaching the optimism or strength they had learned to families who were reeling from a recent diagnosis, they strengthened their own families.
I know that the child I was appalled my mother and concerned my father. I used to be furious at them for not embracing this horizontal part of me, for not embracing the early evidence of it. I wish I’d been accepted sooner and better. Acceptance was always easier for my father than it was for my mother, who died when I was twenty-seven and still grappling to define my identity. My father accepts himself more readily than my mother did herself. In her own mind, she always fell short. In my father’s own mind, he is victorious. The inner daring of becoming myself was my mother’s gift to me, while the outer audacity to express that self came from my father.
Writing this book addressed a sadness within me and—somewhat to my surprise—has largely cured it. In the wake of these stories about horizontal identities, I recast my own story. I have a horizontal experience of being gay and a vertical one of the family that produced me. The fact that they are not fully integrated no longer seems to undermine either one. I realized that I had demanded that my parents accept me, even while I had resisted accepting them. I set off to understand myself and ended up understanding my parents. Their love ultimately forgave me; mine came to forgive them, too.
For some parents of children with horizontal identities, acceptance comes when parents realize that they have slowly been falling in love with someone they didn’t know enough to want. As these parents look back, they see how every stage of loving their child has enriched them in ways they never would have imagined.
For the children with horizontal identities, self-acceptance often comes when they find their horizontal communities. Sometimes they are led to these communities by their parents. Sometimes they have to drag their families kicking and screaming into these new worlds. Like mine, their horizontal and vertical identities may never be fully integrated.
This book’s surprising discovery is that most of the families described here have ended up grateful for experiences they would have done anything to avoid.