This appeared in TIME magazine in 1966, when I was two years old:
Even in purely nonreligious terms, homosexuality represents a misuse of the sexual faculty. It is a pathetic little second-rate substitute for reality, a pitiable flight from life. As such, it deserves fairness, compassion, understanding and, when possible, treatment. But it deserves no encouragement, no glamorization, no rationalization, no fake status as minority martyrdom, no sophistry about simple differences in taste—and, above all, no pretense that it is anything but a pernicious sickness.
Last year, the President of the United States came out in favor of gay marriage.
I set out in my most recent book Far From the Tree: Parents, Children, and the Search for Identity to understand how we got from there to here—how an illness became an identity.
A Pink Balloon
When I was seven, my mother, my brother and I went to Indian Walk Shoes, and as we were leaving, the salesman asked what color balloons we’d like. My brother wanted a red balloon. I wanted a pink one. My mother countered that I didn’t want a pink balloon, and reminded me that my favorite color was blue. I said I really wanted the pink, but under her glare, I took the blue one. The fact that my favorite color now is blue but I am still gay is evidence of both my mother’s influence and its limits. She once said, “When you were little, you didn’t like to do what other kids liked to do, and I encouraged you to be yourself.” She added, only half-ironically, “I sometimes think I let things go too far.” I have sometimes thought she didn’t let them go far enough. But her encouragement of my individuality, although doubtless ambivalent, has shaped my life.
When I was little, my mother used to say, “The love you have for your children is like no other feeling in the world, and until you have children, you don’t know what it’s like.” I took those words as the greatest compliment in the world. But when I was an adolescent, I thought that, as a gay person, I probably couldn’t have a family, and so her words made me anxious. After I came out of the closet, those words made me furious. I said, “I’m gay. I’m not going to have children. And I want you to stop saying that.”
Two Kinds of Identity
In 1993, I was asked by my editors at the New York Times Magazine to write a piece about Deaf culture. I had thought of deafness entirely as an illness, but now I went out into the deaf world. I went to deaf clubs; I saw performances of Deaf theater and poetry. I even went to the Miss Deaf America Contest in Nashville, Tennessee, where people complained about that slurry Southern signing. As I plunged deeper and deeper into the Deaf world, I became convinced that Deafness was a culture organized around the shared use of sign language. It wasn’t my culture, and I didn’t particularly want to join it. But I appreciated that for those who are members of it, it feels as valuable as Latino culture or gay culture or Jewish culture do to their constituents. Most deaf children are born to hearing parents, who often try to cure them; deaf people often discover community only in adolescence. The pattern seems to echo the experience of gay people, who are mostly born to straight parents and often find gay identity only in adolescence or thereafter.
Then a friend of a friend of mine had a daughter who was a dwarf. She suddenly found herself confronting questions that now began to seem familiar. Should she tell her daughter that she was just like everyone else, but shorter? Or should she try to construct some kind of dwarf identity and get involved in the Little People of America?
Here it was again. A family that perceived itself to be normal, with a child who seemed to be extraordinary. So I hatched the idea that there are really two kinds of identity. There are vertical identities which are passed down generationally from parent to child. Those are characteristics such as ethnicity, nationality, language, often religion. While some of them can be difficult, there is no attempt to cure them. It can be argued that it is harder in the United States, our current presidency notwithstanding, to be a person of color. And yet, we have nobody who is trying to ensure that the next generation of children born to African-Americans and Asians come out with creamy skin and yellow hair.
Then there are horizontal identities, those that occur when someone has an inherent or acquired trait that is foreign to his or her parents, and must therefore acquire identity from a peer group. Such horizontal identities may reflect recessive genes, random mutations, prenatal influences, or values and preferences that a child does not share with his progenitors. Being gay is a horizontal identity; most gay kids are born to straight parents, and while their sexuality is not determined by their peers, they learn gay identity by observing and participating in a subculture outside the family. Physical disability tends to be horizontal, as does genius. Psychopathy, too, is often horizontal; most criminals are not raised by the Mafia, and must invent their own treachery. So are conditions such as autism and intellectual disability. A child conceived in rape is born into emotional challenges that his own mother cannot know, even though they spring from her trauma.
Parents have almost always tried to cure those horizontal identities. People who have these conditions are frequently very angry because they feel as though their parents don’t love them, when what actually has happened is that their parents don’t accept them. Love is ideally present unconditionally throughout the relationship between a parent and a child. But acceptance is something that takes time. It always takes time. And in order for a condition to emerge as an identity, three levels of acceptance need to be in place: self-acceptance, family acceptance, and social acceptance. Each of these enables and depends on the others.
Readjusting Parental Expectations
When Clinton Brown was born, he was diagnosed with diastrophic dwarfism, a very disabling condition. His parents were told that he would never walk or talk or think. The doctors suggested that they leave him at the hospital so that he could die there quietly. But his mother, Cheryl, said she was going to take her son home. And even though she didn’t have tremendous educational or financial advantages, she found the best doctor in the country for dealing with diastrophic dwarfism. In the course of Clinton’s childhood, he had thirty major surgical procedures, as a result of which he now can walk. While he was in the hospital, he had tutors to help him with his schoolwork, and because there was nothing else to do, he worked very hard. He ended up achieving at a level that had never before been contemplated by any member of his family. He went to college, where he lived on campus and drove a specially fitted car that accommodated his unusual body. “I was terrified about his drinking and driving,” Cheryl said. “I went past a bar and I saw his car parked there—it’s very easy to recognize with all those fittings. I didn’t think I could march in there like I wanted, but I left him three messages and sat home by the phone waiting for him to call. Then I thought, okay, if you’d told me when he was born, that my worry would be that he’d go out driving after drinking with his college buddies, I’d have been overjoyed.”
I asked her, “What do you think you did that helped him to emerge as this charming, accomplished, wonderful person?” And she said: “What did I do? I loved him, that’s all. Clinton just always had that light in him. And we were lucky enough to be the first to see it there.”
A Shift in a Nation’s Attitude
A lot of ink has been given to our progress on gay rights; the fact that national attitudes have shifted is in the headlines every day. But we forget how we used to see people who had other differences, how inhuman we could imagine a human being to be. In a 1968 article in the Atlantic Monthly, a voice of liberal America, ethicist Joseph Fletcher argued:
People [with children with Down’s syndrome] … have no reason to feel guilty about putting a Down’s syndrome baby away, whether it’s “put away” in the sense of hidden in a sanitarium or in a more responsible lethal sense. It is sad, yes. Dreadful. But it carries no guilt. True guilt arises only from an offense against a person, and a Down’s is not a person.
One of the families I interviewed, Tom and Karen Robards, were taken aback when, as young and successful New Yorkers, their first child, David, was diagnosed with Down syndrome. The educational opportunities for him were not what they should be, and so with a few other parents, they created a small facility with two classrooms to educate kids with DS. Over the years, that initiative grew into the Cooke Center, where thousands upon thousands of children with intellectual disabilities have now been taught. In the time since that Atlantic story ran, the life expectancy for people with Down syndrome has tripled. People with Down syndrome are actors or writers; some are able to live fully independently in adulthood.
The Robardses had a lot to do with that shift. I asked, “Do you regret it? Do you wish your child didn’t have Down syndrome? Do you wish you’d never heard of it?” And Tom said, “If I could have David who he is but not have Down Syndrome? I would do it in a minute. I would do it because I think for David, it’s hard being in the world with Down syndrome, and I’d like to give him a happier, easier life. But the diversity of human beings makes the world a better place, and if everyone with Down syndrome were cured, it would be a real loss. The personal wish and the social wish are in opposition. The question is whether we collectively learn more than we hurt.”
Karen shook her head. “I’m with Tom. If I could cure David, I would, for David. But I think that we’ve grown so much as a result of having to deal with this. We’ve had so much purpose. I’d never have believed 23 years ago when he was born that I could come to such a point, but I have. For David, I’d cure it in an instant; but for us, I wouldn’t exchange these experiences for anything. They’ve made us who we are, and who we are is so much better than who we would have been otherwise.”
Children Want to be Who They Are
We live at a point when social acceptance for these and many other conditions is on the up and up. And yet we also live at the moment when our ability to eliminate those conditions has reached unimagined heights. Most deaf infants born in the United States will receive cochlear implants, which are surgically placed in the brain and connected to a receiver, allowing them to acquire a facsimile of hearing. A compound that has been tested in mice, BMN-111, blocks the action of the achondroplasia gene. Achondroplasia is the most common form of dwarfism, and mice with the achondroplasia gene who have been given BMN-111 grow to full size. Testing in humans has already begun. Blood tests now in development would pick up Down syndrome earlier in pregnancies than ever before, making it easier to terminate those pregnancies.
I believe in both social and medical progress. But I think it’s a tragedy when one of them doesn’t see the other. When social and medical progress clash as they have in these conditions, I sometimes think it’s like those moments in grand opera when the hero realizes he loves the heroine at the exact moment that she lies expiring on the divan.
The most frequent question of parenthood is what to validate in our children, and what to ameliorate. Jim Sinclair, a prominent autism rights activist and himself autistic, said:
When parents say, “I wish my child did not have autism,” what they’re really saying is, “I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.” Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
It’s a very extreme point of view, but it points to the reality that people engage with the life they have. And they don’t want to be cured or changed or eliminated. They want to be whoever it is that they are.
One of the families I interviewed for this project was the family of Dylan Klebold, one of the perpetrators of the Columbine massacre. The first weekend I spent with them, I recorded more than twenty hours of conversation. On Sunday night, when we were all exhausted, sitting in the kitchen, I said, “If Dylan were here now, do you have a sense of what you’d want to ask him?” Tom said, “I’d ask him what the hell he was thinking and what the hell he thought he was doing!” Sue looked down at the floor for a minute before saying quietly, “I would ask him to forgive me, for being his mother and never knowing what was going on inside his head.” When I had dinner with her a couple of years later, she said, “When it first happened, I used to wish that I had never had children, that I had never married. If Tom and I hadn’t crossed paths at Ohio State, Dylan wouldn’t have existed and this terrible thing wouldn’t have happened. But over time, I’ve come to feel that, for myself, I am glad I had kids and glad I had the kids I did, because the love for them—even at the price of this pain—has been the single greatest joy of my life. When I say that, I am speaking of my own pain, and not of the pain of other people. But I accept my own pain; life is full of suffering, and this is mine. I know it would have been better for the world if Dylan had never been born. But I believe it would not have been better for me.”
I was struck by how very attached all these parents were to children who manifested shocking challenges. I wondered how they had all found so much meaning in parenting under apparently antithetical circumstances. And then I thought that all of us who have children cherish the children we have, with their inherent flaws. If some glorious angel suddenly descended through my living room ceiling and offered to take away the children I have and give me other, better children—more polite, nicer, smarter—I would cling to the children I have and pray away that atrocious spectacle. As one mother said when she interred the ashes of her severely disabled child, “Let me bury here the rage I feel to have been twice robbed: once of the child I wanted, and once of the son I loved.”
In the same way that we test flame-retardant pajamas in an inferno to ensure they won’t catch fire when our child reaches across the stove, so these stories of families negotiating extreme differences reflect on the universal experience of parenting. I have yet to meet any parent who hasn’t occasionally looked at his or her child and wondered, “Where did you come from?”
Each of the ten kinds of difference I researched is siloed; there are only so many families dealing with schizophrenia, only so many families of children who are transgender, only so many families of prodigies. But if one recognizes that all these families are negotiating difference and posits that all such experiences are parallel, then it turns out that this a nearly universal phenomenon. Difference is ubiquitous; we have no thing more in common than our variance from the norm. Ironically, it turns out that our differences unite us.
My Own Family
I decided to have children while I was working on this project. Many people said, “But how could you decide to become a father in the midst of writing a book about everything that can go wrong?” And I said, “It’s not a book about everything that can go wrong. It’s a book about how much love there can be even when everything appears to be going wrong.”
My husband is the biological father of two children with some lesbian friends in Minneapolis. I had a close friend from college who’d gone through a divorce and wanted to have children; she and I have a daughter, and mother and daughter live in Texas. And my husband and I have a son who lives with us all the time, of whom I am the biological father, and for whom our surrogate was Laura, the lesbian mother of John’s two biological children. The shorthand is that we are five parents of four children in three states.
There are people who think that the existence of my family somehow undermines or weakens or damages their family. But I don’t accept subtractive models of love—only additive ones. I believe that in the same way that we need species diversity to ensure a healthy planet, so we need this diversity of affection and family to strengthen the ecosphere of kindness.
The day after our son was born, the pediatrician came into the hospital room and said that he wasn’t extending his legs appropriately. She said that might mean that he had brain damage. Insofar as he was extending them, he was doing so asymmetrically, which she thought could reflect a tumor. He had a very large head, which might indicate hydrocephalus. As she told me all of these things, I felt the very center of my being pouring out onto the floor. Though I had been working for years on a book about how much meaning people had found in the experience of parenting disabled children, I didn’t want to join their number. What I was experiencing was illness, and like all parents since the dawn of time, I wanted to protect my child from illness. And I wanted also to protect myself. Yet I knew from the work I had done that if our son had any of the things for which we were about to start testing, those conditions would ultimately be his identity, and if they were his identity, they would become my identity.
We took him to get a CAT scan; we gave over our day-old child for an arterial blood draw. At the end of five hours, the pediatrician said that his brain was completely clear and that he was by then extending his legs correctly. When I asked her what had been going on in the morning, she said she thought he had probably had a cramp.
I knew that day that my mother was right. The love you have for your children is unlike any other feeling in the world, and until you have children, you don’t know what it feels like. Children had ensnared me the moment I connected fatherhood with loss, but I am not sure I would have noticed that if I hadn’t been immersed in this research. Encountering so much strange love, I fell into its bewitching patterns, and saw how splendor can illuminate even the most abject vulnerabilities. I had witnessed and learned the terrifying joy of unbearable responsibility, recognized how it conquers everything else. Sometimes, I had thought the heroic parents in this book were fools, enslaving themselves to a life’s journey with their alien children, trying to breed identity out of misery. I was startled to learn that my research had built me a plank, and that I was ready to join them on their ship.