Deciding whether to have a child is a loaded question for anyone whose genetics are considered suspect. The disability scholar Adrienne Asch wrote in a 1999 essay, “Chronic illness and disability are not equivalent to acute illness or sudden injury. Most people with spina bifida, achondroplasia, Down syndrome, and many other mobility and sensory impairments perceive themselves as healthy, not sick, and describe their conditions as givens of their lives—the equipment with which they meet the world.” There is truth in what Asch says, but it is not the whole truth. In 2003, I was sent to interview a young woman named Laura Rothenberg about her cystic fibrosis, and we ended up enjoying a brief friendship that was a function of her illness. Even though both her parents were carriers (CF is a recessive genetic condition), she had a horizontal experience of the illness because neither of them had manifested the disease. She wrote a poignant memoir, Breathing for a Living, in which she praised many things inherent in the identity that CF gave her and announced how many things she valued in her life as it had been. Nonetheless, she did not see herself as healthy and would have welcomed a cure—not because she was rejecting this part of herself, but because she wanted to feel good and live long. Her deterioration and death at the age of twenty-two bore little similarity to the experience of a healthy achondroplastic dwarf. Yet, consumed with grief just after her death, her father said to me, “When Laura was conceived, they didn’t have an amniocentesis test for CF. But they developed one. If we’d known, Laura would not have been born. I still have the thought, ‘My God—she could have been denied life.’ What a tragedy that would have been.”
Whether to consign someone else to struggle with the extraordinary burdens you have carried is a personal moral issue. Yet all parents make that decision on some scale. Most choose to procreate even though the affluent could conceive children in vitro with donated Superman sperm and Wonder Woman eggs. Asinine people gamely produce asinine children even though stupidity makes life terribly hard; morbidly obese people often produce corpulent children who may be marginalized because of their body weight; depressive parents produce children who may grapple with chronic sadness. The poor have children despite the obvious disadvantages of poverty.
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It is not a great leap from choosing to keep a pregnancy despite a prenatal diagnosis to selecting for difference. An article in the Los Angeles Times pointed out, “Creating made-to-order babies with genetic defects would seem to be an ethical minefield, but to some parents with disabilities—say, deafness or dwarfism—it just means making babies like them.” In a survey of nearly two hundred American clinics that offer preimplantation genetic diagnosis (PGD), a process that has been available for two decades, 3 percent admitted having used the test to select for an embryo with a disability. Dr. Robert J. Stillman, of the Shady Grove Fertility Center, which has offices in Maryland, Virginia, and Pennsylvania, said he had denied requests to select for deafness and dwarfism. “One of the prime dictates of parenting is to make a better world for our children,” he said. “Dwarfism and deafness are not the norm.”
By what logic does making a better world have to do with hewing to the norm? Michael Bérubé, whose son has Down syndrome, writes, “The question is whether we will maintain a social system that makes allowance for unpredictability, variance, competing moral imperatives, difficult decisions, private decisions, and even perverse decisions.” The debate about embryo selection pertains to that most elusive and most socially determined of human rights, which is dignity. In 2008, Britain amended the Human Fertilisation and Embryology Act to make selecting for a disability illegal. People who choose PGD to avoid Down syndrome, for example, would get a full genetic profile and would not be permitted to implant an embryo with any known disability. Deaf activists were horrified. “There is no going around this,” wrote one blogger. “We are being devalued, unworthy to be humans simply because we are imperfect.”
Sharon Duchesneau and Candace McCullough, lesbian Deaf women, wanted a child, and in 2002 they asked a friend who was fifth-generation deaf to be their sperm donor. They produced two deaf children, Gauvin and Jehanne. They decided to share their experience with a reporter from the Washington Post, fomenting an onslaught of attacks much like those on Bree Walker. Fox News ran a story under the headline, “Victims from Birth: Engineering Defects in Helpless Children Crosses the Line.” Letters published in the Post were similarly hostile. One reader wrote, “That three people (I include the sperm donor) could deliberately deprive another person of a natural faculty is monstrous and cruel and reveals their basic resentment toward people who can hear. There are laws that give access to medical care for children of parents who would deny it on religious grounds. There should be similar protections for children subject to the abuse of being genetically programmed to replicate the disabilities of misguided parents.”
Legal scholar John Corvino pointed out that the public rage was rooted in a fundamental metaphysical fallacy. “They could have chosen a different donor,” he argued. “Or they could have chosen adoption rather than pregnancy. But neither of those choices would have resulted in Gauvin’s having hearing. On the contrary, they would have resulted in his not being born at all.” The Deaf activist Patrick Boudreault said, “No one is talking, ever, about deliberately deafening a child born hearing.”
Few people would assert that a Deaf married couple should not procreate because of the risk of producing deaf children. Some would stipulate that the line be drawn between what one accepts and what one seeks, arguing that the deaf children of heterosexual deaf parents occur by “natural” process—but love and rules do not mix well, and the concept of natural is itself a constantly shifting, unnatural idea often used to veneer prejudice. Those who objected to Duchesneau’s and McCullough’s choice may also not have understood the life experience of those two women, who are college-educated, professionally successful, apparently happy, socially active, and in a good relationship. The original article explained, “At the same time that many would-be parents are screening out qualities they don’t want, many are also selecting for qualities they do want. And in many cases, the aim is to produce not so much a superior baby as a specific baby. A white baby. A black baby. A boy. A girl. Or a baby that’s been even more minutely imagined. ‘In most cases,’ says Sean Tipton, spokesman for the American Society of Reproductive Medicine, ‘what the couples are interested in is someone who physically looks like them.’ In this sense Candy and Sharon are like many parents, hoping for a child who will be in their own image.”
This is a difficult argument to buck. Sharon said, “It would be nice to have a child who is the same as us.” Candy said, “I want to be the same as my child; I want the baby to enjoy what we enjoy.” These don’t seem like radical statements until you learn they came from deaf people. In an article in Nature, Carina Dennis offers further insight into the two women’s motives: “Communication and the pursuit of intimacy are central to being human. If you genuinely believe that your children will have at least as rich an emotional life if they cannot hear, and that you will be better able to communicate with them, why not make this choice?” Candy had grown up in a deaf household with uneducated, working-class parents; Sharon had grown up with hearing parents and did not come into herself until she entered the signing world of Gallaudet. Both women looked up to the educated Deaf of Deaf. They felt they had worked to find their version of happiness and could convey it to the next generation. Parents want children who will be able to benefit from what they have to give.
William Saletan, national correspondent at Slate, wrote, “Old fear: designer babies. New fear: deformer babies.” Of course, “deformer” babies are designer babies, too; they just don’t follow the most popular designs. And designer babies aren’t going anywhere; they will undoubtedly become increasingly common as technology advances. The very phrase designer babies is pejorative, but not so long ago test-tube babies was used with disdain, before IVF became standard operating procedure for an aging middle class. In 20
06, nearly half the PGD clinics surveyed by the Genetics and Public Policy Center at Johns Hopkins University offered a gender-selection service. In 2007, the Bridge Centre fertility clinic in London screened embryos so a baby wouldn’t suffer from a serious squint that afflicted the father, and University College London recently announced the birth of one of the first babies selected to be free of a genetic breast-cancer vulnerability. The Fertility Institutes in Los Angeles declared that they were planning to help couples select for gender, hair color, and eye color, though such a salvo ensued that they suspended the program. Such choices are inevitably the future. How different are they from standard protocols for sperm and egg donors, which screen donors for undesirable hereditary traits and provide information on physical attractiveness, coloring, height, weight, and college entrance test scores? Most people are attracted to others with desirable traits; our very impulse toward sexual congress is a subjective screening process.
A 2004 study conducted at Johns Hopkins notes that the growing debate about reproductive genetic testing has largely been framed by two opposing views: those who see it as “an opportunity to prevent suffering and who oppose limitations on research, technological advance and reproductive choice,” and those who “believe that reproductive genetic testing will have adverse ethical and social impacts and who support restrictions on its development and use.” In The Case Against Perfection, the Harvard philosopher Michael Sandel writes, “Prospective parents remain free to choose whether to use prenatal testing and whether to act on the results. But they are not free to escape the burden of choice that the new technology creates.”
Human beings like to fix things; if we learn to control the weather, we will soon be blind to the majesty of hurricanes and intolerant of the implacable silence of a blizzard. Forty years ago, the toxicologist Marc Lappé cautioned, “It would be unthinkable and immoral if in our zeal to ‘conquer’ genetic defects, we failed to recognize that the ‘defectives’ we identify and abort are no less human than we.” And yet in 2005, the journalist Patricia E. Bauer described in the Washington Post the pressures she had had to negotiate when she decided to keep a daughter prenatally diagnosed with Down syndrome. She wrote, “Prenatal testing is making your right to abort a disabled child more like your duty to abort a disabled child.” No one should be forced to keep a pregnancy she dreads, and no one should be pressured to terminate a pregnancy she desires. Those who are prepared to love children with horizontal qualities give dignity to them, whether or not they have used prenatal testing. With access to reproductive technologies, we are conjecturing what kind of children will make us happy, and what kind we will make happy. It may be irresponsible to avoid this guesswork, but it is naïve to think it is anything more. Hypothetical love has little in common with love.
Which parents should have children and which children should be born will always be debated. We question the decision of people with HIV to produce kids they may not live to raise; we try to prevent teen pregnancies; we judge whether people with disabilities should pass on those differences. It is possible to sterilize people with opprobrium as well as with a scalpel, and it is almost equally cruel. Educating people on the challenges their children may embody is sensible, but preventing them from having children because we think we know the value of those lives smacks of fascism. It is not happenstance that you need a license to get married, but not to have a child.
The United States has less upward mobility than ever before, and less than most other industrialized nations. A 2011 report from the Brookings Institution said, “American mobility is exceptional; where we stand out is our limited mobility from the bottom.” Nearly all the families I met are victims of the beliefs that have spawned that crisis of mobility: the assumption that betterment is a project undertaken by individuals on their own, in which the rest of us need not implicate ourselves. Yet, no one in any of the categories this book explores would have had a better life a half century ago. The dizzying technological advances that threaten many of those identities have coincided with an identity politics that shapes a more tolerant world. We live in an increasingly diverse society, and the lessons in tolerance that come with that diversity have extended even to populations too disenfranchised to make their own claims—a change larger in scope than any that the suffragettes or the civil rights activists envisioned. Disabled people are on television; transgender people hold public office; members of the helping professions are working with criminals, prodigies, and people conceived in rape. Jobs programs exist for people with schizophrenia or autism.
The idea that we live in a shameless time is widely lamented. Why are so many people going on TV to talk about and manifest their idiocy, their pathos, even their cruelty? Why do we embrace rich people who have stolen their fortunes? We may not be ashamed enough of what is authentically reprehensible, but we are likewise increasingly unashamed of what never should have discomfited us in the first place. The opposite of identity politics is embarrassment. We are closer than ever to the rights of life, liberty, and the pursuit of happiness. Fewer and fewer people are mortified by who they truly are.
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Extraordinary is a numbers game. You may argue over whether something extraordinary is good or bad, but you cannot viably argue about whether it is extraordinary—and yet the term is endlessly subject to false claims. Ordinary people insist that they are unique, while extraordinary people maintain that they are really just like everyone else. Dull people would like to be thought remarkable, while exceptional people long for the modest comforts of fitting in. Everyone whose baby is typical can recount the incredibly special things his child does, and everyone whose baby is unmistakably peculiar will explain why grave illness or astonishing gifts do not really create a chasm between such offspring and other children. This mutual counterfeiting reflects a larger ambivalence, which is that we long for and resist difference; we aspire to and fear individuality. A child’s most challenging differences from his parents, by definition, manifest in areas that are unfamiliar to them. Our tendency to misrepresent children as more or less original than they are reflects our misgivings about the relationship between individuality and happiness.
In 2008, the Associated Press reported that a baby with two faces had been born in a village in northern India. Lali Singh had diprosopus, or craniofacial duplication, a rare condition in which a single head has two noses, two mouths, two pairs of lips, and two pairs of eyes. The director of the hospital where she was born said, “She is leading a normal life with no breathing difficulties.” Whatever constitutes a “normal life” in Saini Sunpura, it almost certainly does not include “doing well and being worshipped as the reincarnation of a Hindu goddess of valor, Durga, a fiery deity traditionally depicted with three eyes and many arms.” A hundred people a day were flocking to the house to touch Lali’s feet, offer money, and receive blessings; the village chief had asked the state government for funds to build her a temple. The article mentions only parenthetically that craniofacial duplication is often linked to serious health complications.
Had Lali been born in Duluth or Wichita or Beijing or Paris, her birth would have been a worrisome situation rather than a cause for celebration. Lali’s mother, Sushma, said, “My daughter is fine—like any other child.” Her father, Vinod, took Lali to a New Delhi hospital, but turned down the offer of a CAT scan to determine whether her internal organs were normal and did not pursue treatment for her cleft palate, which interfered with her ability to feed. “I don’t feel the need of that at this stage as my daughter is behaving like a normal child,” he explained. Lali died two months later, mostly of problems that might have been assuaged had she received appropriate early medical care.
The newspaper account of Lali’s short life was less surprising to me than it would have been ten years ago because I encountered versions of it again and again in my research. The beauty of this story—the parents’ apparently instantaneous acceptance of their unusual offspring—became tragic when they confused the r
ightness of their child with normality. Lali’s parents believed that their love and tolerance defined their daughter, when those qualities really only defined them as loving parents. When broad-mindedness blinds us to our offspring’s needs, our love becomes denial. Acknowledging difference need not threaten love; indeed, it can enrich it.
Ideally, profound acceptance allows children to become most fully themselves. Within his or her own family, someone’s dwarfism or autism or prodigiousness or transgenderism may be secondary. Such people are ideally, first and foremost, the children of their parents, fully recognized citizens of the tiny nation that is family. Parents need not merely love their children despite their defects but may find the surprising rightness in those imperfections. A wise psychiatrist once said to me, “People want to get better, but they don’t want to change.” But I would propose that only by allowing people born with horizontal identities not to change does one allow them to get better. Any of us can be a better version of himself, but none of us can be someone else.
Mainstreaming, inclusion, deinstitutionalization, the disability rights movement, identity politics—all these forces both emphasize and normalize difference. They focus on securing accommodation of unusual needs, while asserting that our most basic needs are all the same. They aspire to change the world so that more people can feel unremarkable in it. Many of the parents I interviewed were dedicated to extending the optimal conditions they had achieved at home into the larger community, and so they had become activists—some as a life’s calling, others merely by agreeing to speak on the record. They did so in hopes that a kinder society would help their children across their life span. An integrated educational system benefits many people with horizontal identities; it likewise helps those who share a classroom with them. Similarly, building a compassionate society benefits not only those who are newly tolerated, but also those who are newly tolerating. Incorporating exceptional people into the social fabric is expensive and time-consuming. The emotional and logistical calisthenics can be draining. Yet if parents often end up grateful for their problematical children, then so, in the end, can we all be grateful for the courage such people may embody, the generosity they may teach us, even the ways they complicate the world.
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