The field of profound disabilities does not often have breaking scandals, but the Ashley treatment rocked that world. Ashley X, whose last name has never been revealed, was born in 1997, an apparently healthy baby. When she seemed irritable at about three months, her parents thought it was colic. It turned out to be static encephalopathy, a diagnosis that, like CP, describes a stable brain injury of unknown origin. It has left Ashley with limited functioning: she will never talk, walk, or feed herself, and she cannot turn over. She can sleep, wake, and breathe-and she can smile.

In a bid to defend his own and his family's privacy, her father has refused to meet face-to-face with anyone from the media; he refers to himself as AD (Ashley's Dad). He explained to me over the phone that he and his wife had initially resisted giving Ashley a G-tube because they had a visceral negative response to the idea of surgery. "She cannot chew, and she was always struggling with the bottle," he said. "We would spend six to eight hours a day to get enough nutrition to her." Finally, they had a tube inserted. Despite compromised brain function, Ashley is not unresponsive. "Ashley enjoys our company and voices," her parents said in a written statement. "When we sweet talk to her, she often radiates with a big smile. She enjoys rich music, walks outdoors, a swim on a warm day, the swing, etc." Ashley's parents started to call her their "pillow angel" because she was generally lying on a pillow and never gave them trouble; they have proposed the term be used for other people with MSD. they had a visceral negative response to the idea of surgery. "She cannot chew, and she was always struggling with the bottle," he said. "We would spend six to eight hours a day to get enough nutrition to her." Finally, they had a tube inserted. Despite compromised brain function, Ashley is not unresponsive. "Ashley enjoys our company and voices," her parents said in a written statement. "When we sweet talk to her, she often radiates with a big smile. She enjoys rich music, walks outdoors, a swim on a warm day, the swing, etc." Ashley's parents started to call her their "pillow angel" because she was generally lying on a pillow and never gave them trouble; they have proposed the term be used for other people with MSD.

As Ashley grew from infancy to childhood, her care became more challenging. Hourly, her parents change her position and prop her back on her pillow. "We make sure she is well covered and pull her shirt down to cover her tummy; we wipe her drool, etc.," AD explained to me. "Also there are diaper changes, tube feedings, dressing, bathing, teeth cleaning, stretching, entertainment." All of this became harder as Ashley grew larger. "You start having difficulty including her in activities," AD said to me. "You want to be able to carry her, but your body aches. The notion formed gradually that her added size and weight were her worst enemy, and the idea to do something about it was an epiphany." When Ashley was six, her mother (AM) was talking to her own mother, who reminded her of a neighbor who had had hormone treatments to prevent her becoming extremely tall; this procedure was not uncommon in the 1950s, when girls over five feet ten inches were considered unattractive.

Ashley's pediatrician suggested that AD and AM visit Dr. Daniel Gunther, an endocrinologist at Seattle Children's Hospital. At their appointment several weeks later, Gunther acknowledged that Ashley's growth could be attenuated by administering estrogen, which would close her growth plates. Since Ashley will cry for an hour when she sneezes because she is so upset by slight discomfort, AD thought she would have a hard time with menstruation and the cramping it can cause. He proposed a hysterectomy. He thought breasts would get in her way when she was turned on her pillow or strapped in a wheelchair and asked that his daughter's breast buds, the small, almond-shaped glands that enlarge into breasts at puberty, be removed. All this would result in a person who was easier to move-which, in turn, he argued, would mean better circulation, digestion, and muscle condition for her, and fewer sores and infections. Giving Ashley a permanent child's figure would leave her with what her father called "a body that more closely matched her stage of mental development."

AM and AD had to persuade the hospital ethics committee that this was a viable set of procedures, and AD put together a PowerPoint presentation for that purpose. The ethics committee devoted a great deal of time to the question. "There were two main aspects to the parents' requests," said Dr. Douglas Diekema, who led the ethics panel. "We looked at whether we should permit growth attenuation to occur and whether we should permit a hysterectomy. The first issue was, do these things have the potential to improve this little girl's quality of life? The second issue was, what's the potential for harm here and is it significant enough that even with the prospect of some benefit we shouldn't allow it to move forward? The ethics committee struggled with trying to understand what potential troubles might come to a little girl from this sort of thing. Would someone in Ashley's position ever really care if they were twelve inches shorter? The conclusion was, in Ashley's circumstances height had very little value." Gunther said, "In the end it was the obvious bond and love that exists between Ashley and her parents that convinced them this was the right thing to do."

In 2004, Seattle Children's Hospital doctors performed a hysterectomy and a bilateral mastectomy on Ashley, who was then six and a half. While Ashley's abdomen was opened for the hysterectomy, they also removed her appendix, anticipating that she would not be able to communicate the symptoms of appendicitis should she ever develop it. Ashley's adult height is four feet five inches, her weight is sixty-three pounds, and she will never menstruate, grow breasts, or have the breast cancer that runs in her family. "It has been successful in every expected way," her parents wrote.

AD encouraged Drs. Gunther and Diekema to publish the protocol, which appeared in October of that year in the Archives of Pediatrics & Adolescent Medicine Archives of Pediatrics & Adolescent Medicine. A firestorm ensued. Arthur Caplan, of the University of Pennsylvania Center for Bioethics, characterized it as "a pharmacological solution for a social failure-the fact that American society does not do what it should to help severely disabled children and their families." He suggested that with better support services, Ashley's parents wouldn't have been driven to their radical act. Feminist and disability activists protested at the American Medical Association's headquarters, asking them to issue an official condemnation. One blogger wrote, "If 'Ashley' were a 'normal' child and the parents decided to have her surgically mutilated, the parents would be thrown in prison where they rightly belong. The 'doctors' involved in this case should have their licenses revoked." Another wrote, "They might as well kill her as cut pieces off at a time. Much more convenient, I'd say." FRIDA (Feminist Response in Disability Activism) wrote that they were "not surprised that the initial recipient of the 'Ashley Treatment' was a little girl, given that girls, and girls with disabilities in particular, are perceived as easier subjects for mutilation and desexualization." The were "not surprised that the initial recipient of the 'Ashley Treatment' was a little girl, given that girls, and girls with disabilities in particular, are perceived as easier subjects for mutilation and desexualization." The Toronto Star Toronto Star complained about "designer cripples." complained about "designer cripples."

Parents of other disabled children joined the fray. Julia Epstein, communications director for the Disability Rights Education and Defense Fund and the mother of a disabled child, called the term pillow angel pillow angel "terminally infantilizing." Another wrote, "My son is eleven, doesn't walk, doesn't talk, etc., etc. He's not going to get easier to carry. And still, I don't understand removing healthy tissue and functioning organs." Yet another parent wrote, "Caring for a five feet something, 110-plus pound adult with physical disabilities is no walk in the park. I've got the trashed lumbar discs to prove that. But I am truly just sick to my stomach to imagine that it's acceptable medical practice to surgically stunt a child's growth. Using their logic, why not just perform quadruple amputations? I mean, really, she's not going to use her arms and legs." These comments about growth attenuation echo in some way attitudes toward limb-lengthening for people with dwarfism. "terminally infantilizing." Another wrote, "My son is eleven, doesn't walk, doesn't talk, etc., etc. He's not going to get easier to carry. And still, I don't understand removing healthy tissue and functioning organs." Yet another parent wrote, "Caring for a five feet something, 110-plus pound adult with physical disabilities is no walk in the park. I've got the trashed lumbar discs to prove that. But I am truly just sick to my stomach to imagine that it's acceptable medical practice to surgically stunt a child's growth. Using their logic, why not just perform quadruple amputations? I mean, really, she's not going to use her arms and legs." These comments about growth attenuation echo in some way attitudes toward limb-lengthening for people with dwarfism.

The backlash shocked the hospital administrators, as it did AD and AM. "It was so extreme, and violent," AD said. "There were threats in e-mails." Washington Protection & Advocacy System, a federally mandated watchdog agency, ruled that involuntary sterilization requires a court order, and that the hospital was therefore in violation of the law. Following their report, Seattle Children's has agreed to appoint a disinterested party to advocate for the interests of any disabled individual for whom growth-limiting treatment is proposed. The debate has gone on ever since, with many commentators opining that the whole question is beyond the scope of medical ethics. In late 2010, the Seattle Growth Attenuation and Ethics Working Group issued new guidelines based on an uneasy compromise: "Growth attenuation can be an ethically acceptable decision because the benefits and risks are similar to those associated with other decisions that parents make for their profoundly disabled children and about which reasonable people disagree. But clinicians and institutions should not provide growth attenuation simply because parents request it. It is important to have safeguards in place, such as eligibility criteria, a thorough decision-making process, and the involvement of ethics consultants or committees."

Writing in the Hastings Center Report, Hastings Center Report, one member of the Working Group complained of the assault on the Ashley treatment, saying, "This remarkable intrusion into private medical decisions lacks any plausible claim of harm to third parties other than emotional distress on becoming aware that one's moral or political views are not shared one member of the Working Group complained of the assault on the Ashley treatment, saying, "This remarkable intrusion into private medical decisions lacks any plausible claim of harm to third parties other than emotional distress on becoming aware that one's moral or political views are not shared by everyone. By this criterion, parents seeking cochlear implants for a deaf child, surgical correction of club feet or scoliosis, or a do-not-resuscitate order for a terminally ill child should be reminded that their decisions may be offensive to others." But in the same issue, another author argued, "If growth attenuation should not be done on children without these impairments, then it should not be done on any children. To do otherwise amounts to discrimination." by everyone. By this criterion, parents seeking cochlear implants for a deaf child, surgical correction of club feet or scoliosis, or a do-not-resuscitate order for a terminally ill child should be reminded that their decisions may be offensive to others." But in the same issue, another author argued, "If growth attenuation should not be done on children without these impairments, then it should not be done on any children. To do otherwise amounts to discrimination."

The moral questions enmeshed in cases such as Ashley's have become steadily more complex in the last fifty years. It's problematic to resolve identity conditions, and it's problematic to neglect medical or social imperatives. AD set up a webpage to tell his side of the story; it has since had nearly three million hits, and at the time we spoke, AD told me he spent about ten hours a week blogging. Describing the protesters as a loud minority, he said that about 95 percent of the e-mail he and AM received was supportive. An MSNBC survey with more than seven thousand respondents showed 59 percent in support of the treatment. "More than 1,100 caregivers and family members with direct experience with pillow angels took the time to e-mail us with their support," Ashley's parents wrote. "If parents of children like Ashley believe that this treatment will improve their children's quality of life, then they should be diligent and tenacious in providing it for them." In the wake of the controversy, however, the procedure is unavailable.

Gunther said, "The argument that a beneficial treatment should not be used because it might be misused is itself a slippery slope. If we did not use available therapies because they could be misused, we would be practicing very little medicine." Writing in the New York Times, New York Times, the Princeton ethicist Peter Singer said, "What matters in Ashley's life is that she should not suffer, and that she should be able to enjoy whatever she is capable of enjoying. Beyond that, she is precious not so much for what she is, but because her parents and siblings love her and care about her. Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families." the Princeton ethicist Peter Singer said, "What matters in Ashley's life is that she should not suffer, and that she should be able to enjoy whatever she is capable of enjoying. Beyond that, she is precious not so much for what she is, but because her parents and siblings love her and care about her. Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families."

My conversations with AD made it clear to me that he loved Ashley, and that he believed fervently in the Ashley treatment. While writing this book, I met family after family who didn't know what to do as their children grew up and became too big to handle. Disability activists often referred to Ashley's loss of dignity, but having seen a number of similarly disabled people lifted up in pulleys with chains to be removed from bed, put in metal standers to preserve muscle tone, conveyed on rope systems into showers, I cannot see much dignity there. Arthur Caplan and others referred to the need for better social supports for families of people with disabilities, but AD and AM undertook the treatment not because they didn't have resources to get ropes and pulleys and even nurses, but because they felt a different intimacy in carrying their child themselves. Most human beings-children or adults, physically impaired or able-bodied-prefer human touch to mechanical support. Whether that intimacy warrants surgical intervention is open to discussion, but to discount the intimacy and say all that is needed is more access to assistive devices is to miss the point. Arthur Caplan and others referred to the need for better social supports for families of people with disabilities, but AD and AM undertook the treatment not because they didn't have resources to get ropes and pulleys and even nurses, but because they felt a different intimacy in carrying their child themselves. Most human beings-children or adults, physically impaired or able-bodied-prefer human touch to mechanical support. Whether that intimacy warrants surgical intervention is open to discussion, but to discount the intimacy and say all that is needed is more access to assistive devices is to miss the point.

Some activists said that the procedure was not for Ashley's benefit but to make her parents' lives less stressful. These things cannot be separated. If the lives of Ashley's parents are made easier, then they will be able to devote more calm and positive attention to her, and her life will be better. If she is in less pain, her parents' lives will be improved. They are yin and yang, those lives, and far more important than the choice to undertake a procedure is that AD and AM have not separated from Ashley, nor indicated any wish to do so. Ashley likes rides in the car, and the sound of voices; she likes to be lifted and held; and this treatment appears to mean that she can have many years of these experiences instead of going to a group home. Parental care, which so often outclasses other forms of care, will also probably increase her longevity.

It is not true that "love is not love which alters when it alteration finds." Love alters all the time; it is fluid, in perpetual flux, an evolving business across a lifetime. We commit to love our children without knowing them, and knowing them changes how we love them, if not that we love them. Activists are outraged at the things Ashley has lost: being tall, being sexually mature. These attainments are all part of the natural life cycle, but they are not exalted simply because they happen to most people. It's a subtle moral calculus to weigh out what is lost and what is gained by growth and sexual maturity, what is lost and what is gained by growth attenuation and hysterectomy. No one has said that the Ashley treatment is appropriate for people with significant cognition.

The calculus is very much complicated, however, by stories such as Anne McDonald's. She, too, was a pillow angel, permanently unable to walk, talk, feed, or care for herself; she remained small because she was malnourished in the Australian hospital where she was placed in the 1960s. "Like Ashley, I have experienced growth attenuation. I may be the only person on Earth who can say, 'Been there. Done that. Didn't like it. Preferred to grow,'" she wrote in a column for the Seattle Post-Intelligencer. Seattle Post-Intelligencer. "My life changed when I was offered a means of communication. At the age of 16, I was taught to spell by pointing to letters on an alphabet board. Two years later, I used spelling to instruct the lawyers "My life changed when I was offered a means of communication. At the age of 16, I was taught to spell by pointing to letters on an alphabet board. Two years later, I used spelling to instruct the lawyers who fought the habeas corpus action that enabled me to leave the institution in which I'd lived for 14 years." Anne McDonald eventually graduated from a university with majors in philosophy of science and fine arts. She traveled around the world. "Ashley's condemned to be a Peter Pan and never grow, but it's not too late for her to learn to communicate," McDonald continued. "It's profoundly unethical to leave her on that pillow without making every effort to give her a voice of her own." who fought the habeas corpus action that enabled me to leave the institution in which I'd lived for 14 years." Anne McDonald eventually graduated from a university with majors in philosophy of science and fine arts. She traveled around the world. "Ashley's condemned to be a Peter Pan and never grow, but it's not too late for her to learn to communicate," McDonald continued. "It's profoundly unethical to leave her on that pillow without making every effort to give her a voice of her own."

McDonald's story and writing point to the inscrutability of people who cannot express themselves. Nonetheless, her growth attenuation was caused by horrible neglect in the institution where her parents had abandoned her, while Ashley's was brought about by parents who love her, to keep her with them. McDonald's intelligence had no chance to emerge; Ashley's has been given every encouragement. "I hope she does not understand what has happened to her; but I'm afraid she probably does," McDonald wrote. AD is mistaken in suggesting that Ashley is definitively incapable of mental development; the plasticity of even the most basic parts of the brain means that most people develop with the simple passage of time. A letter in Pediatrics Pediatrics protested, "The idea that we can be certain about prognosis for 'nuanced' communication in a three-year-old is simply wrong; too much depends on how the child is raised and cared for and at three years many parents are still too confused and sad to grapple with the future." In commenting on the Ashley story, Alice Domurat Dreger wrote touchingly of her own mother's polishing her grandfather's glasses as he neared the end of his life-"just in case he could still see." protested, "The idea that we can be certain about prognosis for 'nuanced' communication in a three-year-old is simply wrong; too much depends on how the child is raised and cared for and at three years many parents are still too confused and sad to grapple with the future." In commenting on the Ashley story, Alice Domurat Dreger wrote touchingly of her own mother's polishing her grandfather's glasses as he neared the end of his life-"just in case he could still see."

Higher-functioning disabled people of necessity speak for lower-functioning disabled people, and the insights of higher-functioning disabled people are precious; their situation is, after all, closer to that of low-functioning disabled people than is that of the general population. A higher-functioning person who used to be lower-functioning-such as Anne McDonald-has particular authority. Nonetheless, claims to common cause are often muddied by projection. McDonald seems to be retelling her own history rather than responding to Ashley's. Ashley is essentially unknowable both to her parents and to the vocal advocates who believe they have spoken on her behalf. Disability rights advocates complain of a world that refuses to accommodate their reality, but AD makes a similar complaint: that a tyrannical group of empowered people prevents accommodation of an individual and her specific needs.

"A collective agenda/ideology is being shoved down the throat of all individuals with disabilities, whether it serves them as individuals or not," AD wrote. "This is disturbing in a society that believes strongly in the well-being of children and in individual rights. We feel the benefits to Ashley on a daily basis. We care about how this might help other kids in her situation. A lot of the criticism came from people who themselves have disabilities and was based on their feeling about how inappropriate the treatment would be for them. Clearly Ashley is in a vastly different category of disability than someone who is able to blog and write e-mails and make decisions for themselves. A chasm separates the two, not a slippery slope like some fear or claim. Newtonian physics works well in most cases, but not in extreme cases. As Einstein pointed out, it fails at high speeds. Relativity explains that very well. So, this ideology of the disability community works well. We support it. In this extreme case, however, it fails miserably." in the well-being of children and in individual rights. We feel the benefits to Ashley on a daily basis. We care about how this might help other kids in her situation. A lot of the criticism came from people who themselves have disabilities and was based on their feeling about how inappropriate the treatment would be for them. Clearly Ashley is in a vastly different category of disability than someone who is able to blog and write e-mails and make decisions for themselves. A chasm separates the two, not a slippery slope like some fear or claim. Newtonian physics works well in most cases, but not in extreme cases. As Einstein pointed out, it fails at high speeds. Relativity explains that very well. So, this ideology of the disability community works well. We support it. In this extreme case, however, it fails miserably."

Our understanding of brain science is so advanced and yet so primitive. We still have much to learn about brain plasticity and neurogenesis, and the nature of anyone's silence is always a matter of speculation. We make mistakes both in doing too much and in doing too little. Norman Kunc, who was born with cerebral palsy and is now a consultant and speaker on disability issues, has described how much of a gap there can be between the benign intention and problematic consequences of treatment for people with disabilities. He characterized his own early experiences with physiotherapy as akin to rape. "From the age of three until the age of twelve, three times a week," he said, "women who were older than I was, who were more powerful than I was, who had more authority than I had, brought me into their room, their space, their turf. They took off some of my clothes. They invaded my personal space. They gripped me and touched me, manipulating my body in ways that were painful. I didn't know I had any other choice than to go along with it. To me it's a form of sexual assault even though it was completely asexual. It's the power and domination that is part of the abuse. Obviously the therapist does not have the same intent as a rapist, but there is a difference between caring and competence. Many human service professionals assume that, because they care for people, their actions are inevitably competent. As soon as you challenge the competence of their actions, you're seen as questioning their caring for the person."

Kunc argues that doing something with love does not necessarily make it good. Even outside the world of disability, we all perpetrate and are subject to loving yet damaging acts within our families. That damage is likely to be greater and more frequent with horizontal identities because the good intentions are less informed. Because I am gay, my parents hurt me in ways they wouldn't have if I'd been like them-not because they wanted to hurt me, but because they lacked sufficient insight into what it was like to be gay. Their essentially good intentions, though, are crucial to my adult identity. I can't be sure whether AD harmed his daughter or helped her, but I believe that he acted in good faith. Parents are broken and full of error. Intention does not obliterate that error, but I think, contrary to Kunc, that it does at least mitigate it. Being hurt by those you love is awful, but it's less awful if you know they meant to help. insight into what it was like to be gay. Their essentially good intentions, though, are crucial to my adult identity. I can't be sure whether AD harmed his daughter or helped her, but I believe that he acted in good faith. Parents are broken and full of error. Intention does not obliterate that error, but I think, contrary to Kunc, that it does at least mitigate it. Being hurt by those you love is awful, but it's less awful if you know they meant to help.

The word genocide genocide gets thrown around a lot in identity movements. Deaf people speak of a genocide because so many deaf children receive cochlear implants; people with Down syndrome and their families speak of a genocide achieved through selective termination of pregnancies. Few people, however, would propose that people who are deaf or who have DS should be killed or left to die. Though some parents murder their autistic children, the practice is commonly held to be shocking and wrong. In cases of multiple severe disability, however, far more people feel comfortable with such a solution. This is in part because these children often live only by way of extreme medical intervention; they are a modern invention, and the idea of letting them die can be held up as "letting nature take its course." gets thrown around a lot in identity movements. Deaf people speak of a genocide because so many deaf children receive cochlear implants; people with Down syndrome and their families speak of a genocide achieved through selective termination of pregnancies. Few people, however, would propose that people who are deaf or who have DS should be killed or left to die. Though some parents murder their autistic children, the practice is commonly held to be shocking and wrong. In cases of multiple severe disability, however, far more people feel comfortable with such a solution. This is in part because these children often live only by way of extreme medical intervention; they are a modern invention, and the idea of letting them die can be held up as "letting nature take its course."

In Rethinking Life and Death, Rethinking Life and Death, Peter Singer quotes an Australian pediatrician, Frank Shann, who described two children in his care. One had had massive bleeding in his brain and therefore had no cerebral cortex; he was capable only of automatic function. In the next bed was a child who was healthy except for a damaged heart, and who would die without a heart transplant. The vegetative boy was a blood-type match, and his heart could have saved the other child, but this would have required that his organs be harvested before he was legally dead. Since this was impossible, both children died within weeks. Shann said, "If the cortex of the brain is dead, the person is dead. I suggest it should be legal to use the organs from the body of the dead person for transplantation." Singer does not agree that obliteration of the cortex is equivalent to death, but he nonetheless feels that the death of both children was a tragic waste. Disability advocates would say it is as unthinkable to kill a severely disabled child to save a nondisabled child as it would be to kill one nondisabled child to save another. Dead people clearly have fewer rights than living people, and Shann held that the first child in his scenario was exempt from the rights of the living. There may be science in this, but it feels weird to describe as Peter Singer quotes an Australian pediatrician, Frank Shann, who described two children in his care. One had had massive bleeding in his brain and therefore had no cerebral cortex; he was capable only of automatic function. In the next bed was a child who was healthy except for a damaged heart, and who would die without a heart transplant. The vegetative boy was a blood-type match, and his heart could have saved the other child, but this would have required that his organs be harvested before he was legally dead. Since this was impossible, both children died within weeks. Shann said, "If the cortex of the brain is dead, the person is dead. I suggest it should be legal to use the organs from the body of the dead person for transplantation." Singer does not agree that obliteration of the cortex is equivalent to death, but he nonetheless feels that the death of both children was a tragic waste. Disability advocates would say it is as unthinkable to kill a severely disabled child to save a nondisabled child as it would be to kill one nondisabled child to save another. Dead people clearly have fewer rights than living people, and Shann held that the first child in his scenario was exempt from the rights of the living. There may be science in this, but it feels weird to describe as dead dead someone who is breathing, sneezing, yawning, even producing some form of reflex smile. someone who is breathing, sneezing, yawning, even producing some form of reflex smile.

Peter Singer maintains that what is in question is personhood personhood. He proposes that not all persons are human beings; sentient animals of higher awareness are also persons. He likewise opines that not all human beings are persons. In awareness are also persons. He likewise opines that not all human beings are persons. In Practical Ethics Practical Ethics he wrote, "Killing a disabled infant is not morally equivalent to killing a person. Very often it is not wrong at all." Elsewhere he has contended, "If we compare a severely defective human infant with a nonhuman animal, a dog or a pig, for example, we will often find the nonhuman to have superior capacities, both actual and potential, for rationality, self-consciousness, communication, and anything else that can plausibly be considered morally significant." Singer in effect reverses he wrote, "Killing a disabled infant is not morally equivalent to killing a person. Very often it is not wrong at all." Elsewhere he has contended, "If we compare a severely defective human infant with a nonhuman animal, a dog or a pig, for example, we will often find the nonhuman to have superior capacities, both actual and potential, for rationality, self-consciousness, communication, and anything else that can plausibly be considered morally significant." Singer in effect reverses cogito, ergo sum cogito, ergo sum and says that those who do not think do not exist. and says that those who do not think do not exist.

Nearly all agree that one cannot kill disabled children against their parents' will, but whether they can be kept alive against their parents' will is a tougher question. In 1991, Karla Miller, five months pregnant, went into labor and was rushed to her local hospital in Houston. Doctors told her she was having a "tragic miscarriage" and asked whether she and her husband preferred to let nature follow its course, or to have an experimental procedure that would probably leave the child alive but severely brain-damaged. The couple prayed and decided to forgo heroic measures. The hospital administration then informed them that hospital policy was to resuscitate all babies born over five hundred grams, and that if they did not want the baby saved, they should leave the hospital immediately. As Karla was hemorrhaging and in danger of bleeding to death, they chose not to do so. Though in many states Karla could have aborted a fetus at this stage of development, she did not have the right to refuse life support once the child had come out of her. When the baby arrived at 630 grams, medical personnel inserted a tube into the newborn's throat to give oxygen to her undeveloped lungs. She is blind and has never walked or talked.

The Millers took care of her, but they brought a wrongful-life case against the hospital, claiming that the hospital had acted against their wishes and should therefore provide a financial settlement to finance the child's permanent care. A court awarded the Millers $43 million in damages and expenses, but that decision was overturned on appeal. Official policy had kept their child from dying; official policy said it was their problem to deal with her needs for the rest of their lives.

The Miller case prompted enormous protest and a coalition of seventeen disability organizations filed an amicus brief that stated, "Most adults with disabilities, including those who have had a disability since birth, choose life and have quality in their lives. Most parents of children with disabilities value and believe their children's lives have quality." The disability-focused Inclusion Daily Express Inclusion Daily Express wrote, "Many disability rights advocates believe that the Millers' suit promotes infanticide-the wrote, "Many disability rights advocates believe that the Millers' suit promotes infanticide-the murder of babies-particularly of those with disabilities." Among people outside the disability rights community, opinions were less decisive. "I think that it is really inappropriate to override the wishes of the parents, particularly with children like this," said Ellen Wright Clayton, a pediatrics expert at Vanderbilt University. George Annas, a health-law and bioethics expert at Boston University, said, "The truth is, no one really knows what's best for kids like this, and there should be no hard-and-fast rule." murder of babies-particularly of those with disabilities." Among people outside the disability rights community, opinions were less decisive. "I think that it is really inappropriate to override the wishes of the parents, particularly with children like this," said Ellen Wright Clayton, a pediatrics expert at Vanderbilt University. George Annas, a health-law and bioethics expert at Boston University, said, "The truth is, no one really knows what's best for kids like this, and there should be no hard-and-fast rule."

For legal purposes, the referent was a 1978 decision made in New York, in which the judge wrote, "Whether it is better never to have been born at all than to have been born with even gross deficiencies is a mystery more properly to be left to the philosophers and the theologians. Surely the law can assert no competence to resolve the issue, particularly in view of the very nearly uniform high value which the law and mankind has placed on human life, rather than its absence. The implications of any such proposition are staggering."

Opera, an art form largely devoted to finding beauty in catastrophe, was not a bad preparation for life for Julia Hollander, a director who has worked at the English National Opera. Before her second daughter, Imogen, was even conceived, Julia had wanted to think deeply about illness and had volunteered in one of Mother Teresa's hospices in Calcutta. Julia's pregnancy with Imogen appeared to go well until she went into sudden labor in the small hours of the night at thirty-eight weeks, on June 19, 2002. The pain was excruciating. "I'd had a protracted labor before," Julia recalled, "and it was a rather fun twenty-four hours in comparison with this." She phoned her midwife, who advised her to go to A&E, the emergency room, in Oxford. An administrator at the hospital said they couldn't take her because she was registered with a midwifery center; as they were arguing, Julia's water broke, and he advised her to head to the center immediately. Jay Arden, Julia's partner and the baby's father, drove her forty minutes there, and the center called in a midwife. The baby's heart rate was half of what it should have been, and the midwife told them to go immediately to a nearby hospital. Julia was screaming in agony by this time, and, knowing the baby was in distress, making every effort to deliver even though she was only three centimeters dilated. She gave birth within minutes of arriving at the hospital. Two weeks earlier, Julia's placenta had hemorrhaged, but because Imogen was already engaged, her head had kept the blood from seeping out.

Blood in the womb is poison. Hemorrhaging occurs in one in a hundred pregnancies, and frequently infants come out fine. But Imogen seemed to be having epileptic fits. Julia and Jay transferred her to the Oxford hospital that had refused them earlier, where she was placed in the Special Care Baby Unit (SCBU), a step short of intensive care. Later, Julia wrote, "In Limbo, the babies have died and now float between life and the after-life. These ones had been born but had not yet entered life." At the end of a week, Imogen opened her eyes, and ten days later, she went home with her parents. seemed to be having epileptic fits. Julia and Jay transferred her to the Oxford hospital that had refused them earlier, where she was placed in the Special Care Baby Unit (SCBU), a step short of intensive care. Later, Julia wrote, "In Limbo, the babies have died and now float between life and the after-life. These ones had been born but had not yet entered life." At the end of a week, Imogen opened her eyes, and ten days later, she went home with her parents.

Imogen couldn't latch on to Julia's breast, and she screamed all the time. "There was no logic to her screaming," Julia recalled. "My other daughter cries, but I know that if I go to her, she'll stop; often she's crying distinctly for me. There was nothing of Imogen's needing me, and nothing I did comforted her in any way. Not to have that was hateful." The care of Imogen became more and more difficult. She seemed seldom to sleep, and never to be awake without bellowing. Jay was able to coax her into at least a temporary quiet by swinging her around wildly and exhaustingly, but after a few weeks, he had to go back to his job. When Imogen was six weeks old "I remember throwing her down on the bed and saying, 'I hate you! I hate you!'" Julia recalled. "It seemed, in retrospect, that nature was telling me to reject this baby." The doctors, gnomic and withholding, still indicated that Imogen might be fine. Julia and Jay tried massage therapies, lactation consultants, colic remedies, a crying-and-feeding diary. Imogen had occasional moments of quiet or sleep, but never an expression of happiness or delight. Then she started throwing up after every feeding. Julia found two statistics on the Internet that stuck with her: eight out of ten parents dealing with severely disabled children were "at the breaking point," and 16 percent of such families in Britain gave their children up to care.

One visitor sent by the National Health Service (NHS) to check on the situation called Julia a saint. "Of course it was her job to get me to bond, because the NHS isn't going to look after these babies if they can possibly help it," Julia said to me. "Imogen wouldn't stop screaming, so I qualified for sainthood." Coexistent with this heroism was hideous rage. "One night in the dark, no moon and no candle, rocking Immie's angry little body back and forth, I feel myself swing just a little bit further," she later wrote. "This is what it would feel like if I were to smash her head against the wall. It would be so simple-her soft skull would crush like a boiled egg, if I just swung that bit harder. I didn't tell anyone about my fantasy, but it disturbed me greatly-the ease with which I really, truly imagined destroying my child." Imogen's smile was now so delayed that its absence was a sure sign of brain damage. The despair Julia and Jay had held at bay stormed the fortress.

A few weeks later, Julia took a respite weekend paid by the state and left Imogen with a substitute caregiver. She had looked forward to such freedom, but found that turning her daughter over to someone "better at loving a person like that than I was" deeply humiliating. Imogen was prescribed a raft of drugs despite the absence of a diagnosis; the pediatrician's warning that "major problems" lay ahead was hardly a coherent road map. Jay began to withdraw. "I was furious with him for not loving his baby," Julia explained. "It reminded me how trapped I was in an impossible, unrequited love for her." This bond, rife with ambivalence, had absorbed all the love she might have given to Jay, and he began threatening to leave. "We were discovering how selfish grief can be," Julia wrote. left Imogen with a substitute caregiver. She had looked forward to such freedom, but found that turning her daughter over to someone "better at loving a person like that than I was" deeply humiliating. Imogen was prescribed a raft of drugs despite the absence of a diagnosis; the pediatrician's warning that "major problems" lay ahead was hardly a coherent road map. Jay began to withdraw. "I was furious with him for not loving his baby," Julia explained. "It reminded me how trapped I was in an impossible, unrequited love for her." This bond, rife with ambivalence, had absorbed all the love she might have given to Jay, and he began threatening to leave. "We were discovering how selfish grief can be," Julia wrote.

Jay proposed that they suffocate Imogen-to spare pain for her and them. It would look exactly like SIDS, or cot death. Julia was horrified, yet she, too, longed for Imogen to die. "I couldn't live with her, and I couldn't live without her," she said. "What was best for her? Did she have a right to live? The word right right is so heavy, isn't it? I think we're very, very muddled about children and life." Julia decided that smothering the baby might be a good idea; now Jay dissuaded her on grounds that if she went to prison, it would devastate their older daughter, Elinor, who at age two was becoming withdrawn and unhappy. Julia tried to figure out how to gird herself for the next stages. "It's a very confusing business, mourning for someone who is alive," she wrote. "You feel you shouldn't really be doing it." There was talk of suing the NHS. Julia and Jay could have received 3 million to look after Imogen until she turned twenty, but to do so they would have had not only to prove that the person at the Oxford hospital who sent them to the midwife had been negligent, which was clearly the case, but also that Imogen would not have lost so much of her brain had Julia been admitted. The assessment would have taken six years. Julia was terrified of the long battle, and of being left financially bereft with full responsibility for a brain-damaged child. is so heavy, isn't it? I think we're very, very muddled about children and life." Julia decided that smothering the baby might be a good idea; now Jay dissuaded her on grounds that if she went to prison, it would devastate their older daughter, Elinor, who at age two was becoming withdrawn and unhappy. Julia tried to figure out how to gird herself for the next stages. "It's a very confusing business, mourning for someone who is alive," she wrote. "You feel you shouldn't really be doing it." There was talk of suing the NHS. Julia and Jay could have received 3 million to look after Imogen until she turned twenty, but to do so they would have had not only to prove that the person at the Oxford hospital who sent them to the midwife had been negligent, which was clearly the case, but also that Imogen would not have lost so much of her brain had Julia been admitted. The assessment would have taken six years. Julia was terrified of the long battle, and of being left financially bereft with full responsibility for a brain-damaged child.

Just short of five months, Imogen's eyes started flickering, and her parents took her to a pediatric neurologist. The neurologist tested her and said tentatively, "It's likely Imogen will never walk or talk." Julia felt that if SCBU was limbo, this was hell. Further testing would take several days. The staff assumed that Julia would stay the night at the hospital-the same hospital that had refused her admission when she was in labor-as most mothers do. "I did a very heinous thing on the first night," Julia said. "I said, 'I'm not staying.' This great institution had betrayed me, and I was saying, 'Fuck you.' As I walked past the other parents, I did not meet their eyes. I was hanging up my halo. I got in the car, and I drove home." Julia became obsessed with the idea that Imogen be allowed to die. She asked that a do-not-resuscitate order be placed on Imogen's charts. That weekend, Julia took Imogen from the hospital and had her baptized. The baptism only confirmed her wish to let Imogen go; to Julia, the doctors' relentless focus on life seemed almost sadistic. Imogen be allowed to die. She asked that a do-not-resuscitate order be placed on Imogen's charts. That weekend, Julia took Imogen from the hospital and had her baptized. The baptism only confirmed her wish to let Imogen go; to Julia, the doctors' relentless focus on life seemed almost sadistic.

On Tuesday, the neurologist showed Imogen's CAT scans to Julia and Jay. As he moved up the head, "we could see that gradually the grey shape was shrinking inside its regular oval frame, replaced by blackness," she wrote. "By the time his finger reached the row where the eyes jutted out, the shape was entirely black, with a lacy edge that looked to me like the frills around a black doily. The neurologist explained that the blackness was the space where Imogen's cerebral cortex should be, the lacy edge its torn remains." The doctor said, "Strictly speaking, she has no intelligence."

Julia said she needed time to absorb all of it, and the neurologist agreed to keep Imogen in the hospital for a week. Julia was preoccupied with the idea that this child never would or could know her, never could feel more than hunger and perhaps hardness and softness. The verdict about what to do next was entirely Julia's. She and Jay were not married, and even though he was named as father on the birth certificate, antiquated British law (since modernized) left him with no jurisdiction. Jay kept asking the doctors if Imogen could be like Christopher Nolan, the locked-in boy, deprived of oxygen at birth, whose mother went on teaching him against all odds, until a drug gave him the use of one muscle, which he used to type beautiful poetry. "When the neurologist said, 'There's no way that she could possibly be like that,' it was a relief to some degree," Julia said. "After that, Jay was very firm that he wasn't going to look after her. Either I would stay with him and lose Imogen, or I would stay with Imogen and lose him. I thought she was the one who needed me. I had to see the evidence that she didn't need me, and that it was my ego that needed her to need me." Later, Julia wrote, "It could not be the unrequited love I had once imagined. Instead, my love existed in a vacuum."

Two days before Imogen was to come home from the hospital, Julia stopped her daily visits. It felt like a charade, going to see someone who could never tell whether she'd been visited or not. Julia stayed in bed, curled up in a dark room. A visitor from the NHS who had adopted a child with cerebral palsy came by. "She was a very philosophical, wise person," Julia said. "I remember saying to her, 'When do you think is the best time to abandon your child if that's what you decide to do?' Her answer was, 'It'll always be the most horrible thing that you ever do.' That helped; there was never going to be a perfect time."

The moment the NHS visitor left, Julia called a lawyer and asked if she would be at risk of losing Elinor if she abandoned Imogen to the system. Julia was assured that she would not be. She asked what she should say to the hospital, and she wrote down the words. On the day Imogen was supposed to come home, Julia did not go to the hospital; she and Jay sat by the telephone and waited for it to ring. The nurse who called said that Imogen was doing well and asked when Julia would be coming in. "I shan't be coming in," Julia said. An astonished silence followed. The nurse asked that Julia and Jay come in for a meeting the next day. At the hospital, Julia used the line the lawyer had given her. She said, "I'm not the right mother for this child." The consultant did not question her decision. "That was a very gentle meeting," Julia said. The doctor asked whether they had ever thought of harming her, his tone suggesting the necessary answer. Jay said, "I can't say I haven't." And the doctor said, "Then let us take the burden away from you." Before they left the hospital, they went to see Imogen, and Julia held her and said to the social worker, "I do love her, you know." Leaving the hospital, Julia wanted to turn back, but Jay stayed the course. "It's me or her," he said, and they drove on, Julia weeping silently. At home, they threw away the clothes, the rattles, the bottles and nipple shields, the crib, the sterilizer, the high chair.

A few days later, a foster mother came to the hospital for Imogen. Tania Beale was a strong Christian, a single mother who already had another disabled child. "Imogen is lying in her cot when I enter her room," Tania later wrote in an essay for the Guardian Guardian. "I sense bewilderment, loss, confusion. Her parents and I size each other up. Who are these people who can bear to part with this beautiful little scrap of humanity? There is something about Imogen. She is determined. She will not be ignored. I have a cloth sling, and this becomes Immie's home. She lies over my heart, suckling on my finger. For the next few months, I wear Immie whenever I am awake." That first day, Jay and Julia gave Tania the pram and the car seat. Julia was impressed by Tania; she found her strong and dignified. "I felt she didn't see me as the pathetic mum who'd failed. I was so grateful for that," Julia said. British social services take the position that a child who is taken into care early should be adopted. The ostensible reason for this is that adoption is more stable, but adoptive parents are not paid for their services as foster parents are, so the state's motives are mixed. For Julia, the ability of someone else to love her daughter was both a relief and an affront. Adoption would mean a complete and irreversible termination of Julia's maternal rights and was frightening; she wished to remain attached.

A few years later, Julia said to me, "I think Tania now feels that our involvement with Imogen is to Imogen's benefit. I, on the other hand, have reached a stage where I would like Tania to be her mother." Tania no longer wants to adopt Imogen. "I got my timing wrong," Julia said. She had hoped that she and Tania could become friends, but that did not happen. When Imogen comes to visit, Jay tickles her until she laughs; he will take her onto the piano bench and play music to her. "In response, Immie would cease her yelling and raise her heavy head as if she were concentrating on the sound, eyes wide and mouth opening in an expression that you might call awe," Julia wrote. Julia began organizing fund-raisers for disabled children and became active at the hospice where Imogen went when she was ill. Julia published a book about her experiences. The family cannot live with Imogen herself, but cannot keep her from the center of their consciousness.

"I am aware that I see a different Immie to the Immie her family knows," Tania wrote. "One day, she smiles. It is brief, but it is there. I discover that she will smile in response to a whistle. On Immie's first birthday she sits in her chair and kicks out at some bells, she smiles at the noise they make and opens her mouth wide for some mashed-up chocolate cake. Slowly, she is learning that life might be worth living." Julia said that the smile was a muscle reflex; she had doctors to back her up. The child she knew and the one Tania described seemed so dissimilar as to obliterate each other. When I first met Julia, Imogen could still take food orally and chew; a year later, she had lost what Julia called her "one skill" and was fed through a G-tube. Imogen currently takes baclofen, which many paroxysmal children take to loosen their muscles; three anticonvulsants; two drugs for her digestive system; and chloral hydrate for sleeping. She sleeps in a sleeping rack, a board with the shape of her legs and arms, into which she is strapped to prevent her convulsive limbs from growing mangled. She has physiotherapy three times a week. On this regimen, Imogen has been given twenty years to live.

"Severe epileptic fits should have been killing her," Julia said. "That was nature's way of destroying this person. But, no. There was a drug that could stop the spasms. It's a very hard thing to want your child to die. To some degree, my anger is about the invention of these children. Because when I was born, they didn't survive. These Imogens are on the increase as the sophistication and tyranny of intervention escalate." Tania, on the other hand, wrote, "Imogen remains profoundly disabled but she knows her family, birth and fostered, and gets excited by visits from any of her grandparents." Tania's aura of calm certainty contrasts with Julia's tendency toward muddled drama. Elinor once asked, "Mummy, if I get brain damage, can I go and live with Tania as well?" At Tania's behest, Julia has had the do-not-resuscitate stamp removed from Imogen's files. Unless Tania decides to adopt Imogen, these decisions rest solely in Julia's hands. "But I won't make them on my own," Julia said. "That would be cruel." "Mummy, if I get brain damage, can I go and live with Tania as well?" At Tania's behest, Julia has had the do-not-resuscitate stamp removed from Imogen's files. Unless Tania decides to adopt Imogen, these decisions rest solely in Julia's hands. "But I won't make them on my own," Julia said. "That would be cruel."

Julia's writing about her experience-first in newspaper articles, and later in a book-was a cry for expiation that met mixed responses. Some readers called her brave; others called her self-serving. The day of our last interview, she said, "Yesterday, I pushed Imogen along the street. It's a nightmare getting six blocks with a wheelchair. All the large cars are parked on the pavement, so you go along two cars' worth, where there's a big enough gap, and then you go onto the road, with the oncoming traffic. By the time you get six blocks, you're a serious martyr. Every time she's around, I experiment with being the mother of the disabled child. People walking along the pavement get out of the way and smile at you, that smile that goes, 'You poor thing, I'm glad I'm not you!' I can imagine polishing my halo at the end of every day. At the very same time, I can imagine being the most furious person in the world."

In Peter Singer's definition, Imogen, Ashley, and others like them are not persons. Nonetheless, the parents I met who lived with and cared for such children often described a great deal of personhood in them. It's impossible to establish in any given case in what measure such personhood is observed and in what measure imagined or projected. Singer does not argue that parents who believe in the personhood of their children have to act toward them as they would toward nonpersons, but he opens the moral framework for someone to think that these children are expendable. I am not sure that, as activists claim, this will lead us into Hitlerian proposals to eliminate a much broader range of the disabled, but neither am I sure that Singer's arguments are as rational as he makes them out to be. His fallacy is his assumption, for himself and for science, of omniscience.

The Australian disability advocate Chris Borthwick has written that for ethicists pondering such a question, "the identification of a class of people who are 'humans' but not human, if any such could be found, would be central." Borthwick says that we accept someone's state as vegetative when that person fails to persuade a doctor that he is conscious-in other words, what is in question is not consciousness, but the legible manifestation of consciousness. Borthwick views consciousness as largely unknowable. He points to a study published in Archives of Neurology Archives of Neurology in which nearly two-thirds of a group of eighty-four people in which nearly two-thirds of a group of eighty-four people judged to be "in a vegetative state" had "recovered awareness" within three years. "One must ask," he writes, "in the light of the evidence, why it is that reasonable, moral, and ethical writers can extract these qualities of permanence and certainty from data that is, to put the matter no more strongly, clearly capable of other interpretations." Borthwick maintains that even if some human beings are nonpersons, we cannot identify them definitively. It's hard not to think of Anne McDonald and Christopher Nolan, who seemed to many professionals to be nonpersons, and who ultimately emerged into shimmering personhood. The same rationale that makes us deplore the death penalty in cases where the evidence is not entirely conclusive should give us pause in these supposedly clear-cut cases. judged to be "in a vegetative state" had "recovered awareness" within three years. "One must ask," he writes, "in the light of the evidence, why it is that reasonable, moral, and ethical writers can extract these qualities of permanence and certainty from data that is, to put the matter no more strongly, clearly capable of other interpretations." Borthwick maintains that even if some human beings are nonpersons, we cannot identify them definitively. It's hard not to think of Anne McDonald and Christopher Nolan, who seemed to many professionals to be nonpersons, and who ultimately emerged into shimmering personhood. The same rationale that makes us deplore the death penalty in cases where the evidence is not entirely conclusive should give us pause in these supposedly clear-cut cases.

Contemplating Singer and Borthwick, I was reminded of Susan Arnsten, mother of Adam Delli-Bovi, who has Down syndrome, and her fascination with the Jewish idea that God exists between people rather than within them. I thought of the work on Deaf culture that shows how Sign emerges unbidden when there are two people to communicate in it, but lies dormant in children isolated from others who might employ it. I recalled the outrage Jay Neugeboren felt at the suggestion that his brother's schizophrenia could be defined in chemical rather than in spiritual and personal terms. I dislike both the conceited science behind Singer's position and the mawkish sentimentality of those who insist that we treat all human life equivalently, always. Of course, practical answers must be sought, but to think of those answers as better than approximate is foolishness. We assign personhood to one another, and we assign it to or withhold it from these disabled children. It is not discovered so much as it is introduced. The psychoanalyst Maggie Robbins once said, "Consciousness is not a noun; it's a verb. Trying to pin it down like a fixed object is a recipe for disaster." Tania sees something elemental, some quality that we might call grace, in Imogen, and Julia doesn't; we commit an arrogant injustice if we insist that either woman is dreaming.

The daughters of the ant queen take care of their mother and siblings; in some bird species, older fledglings help parents raise younger chicks; but overall, little reciprocity is attached to nonhuman parenting. Human parenting is an ultimately bilateral lifetime relationship rather than a unilateral temporary one. Even before the ultimate turnaround in which children in their prime care for incapacitated elderly parents, the manifestations of reciprocity may determine the parents' social status and self-regard. The prospect of such payback is often elided with the earlier reciprocity of the child's adoring gaze, the affection implicit in dependency, the words of adulation lisped by children first grasping language. For the parents of MSD children, early reciprocity may be infrequent and ultimate reciprocity impossible. implicit in dependency, the words of adulation lisped by children first grasping language. For the parents of MSD children, early reciprocity may be infrequent and ultimate reciprocity impossible.

But the pleasure of caring for children does not lie only in reciprocity. The French writer Annie Leclerc has spoken of "the profound taste we have for children," and the feminist psychologist Daphne de Marneffe has said that a mother's skill in responding to her child contributes "not only to her recognition of her child, but to her own sense of pleasure, effectiveness, and self-expression as well." Psychoanalysis has long proposed that mothers' early caretaking is a form of self-care. Freud describes how "parental love, which is so moving and at bottom so childish, is nothing but parental narcissism born again."

This commonality of interest seems to have strengthened most of the parents I interviewed for this chapter, but not all parents can achieve it. Some disability activists, abortion opponents, and religious fundamentalists have argued that those who are unwilling to parent disabled children shouldn't allow themselves to become pregnant in the first place. The reality, however, is that most people embark on parenthood in optimism, and even those who soberly consider a worst-case scenario cannot adequately predict their response to such a situation until they are in it.

Ambivalence exists in all human relationships, including parent-child. Anna Freud maintained that a mother could never satisfy her infant's needs because those are infinite, but that eventually child and mother outgrow that dependence. Children with MSD have permanent needs far beyond that infinity. In Torn in Two, Torn in Two, the British psychoanalyst Rozsika Parker complains that in our open, modern society, the extent of maternal ambivalence is a dark secret. Most mothers treat their occasional wish to be rid of their children as if it were the equivalent of murder itself. Parker proposes that mothering requires two impulses-the impulse to hold on, and the impulse to push away. To be a successful mother you must nurture and love your child, but cannot smother and cling to your child. Mothering involves sailing between what Parker calls "the Scylla of intrusiveness and the Charybdis of neglect." She proposes that the sentimental idea of perfect synchrony between mother and child "can cast a sort of sadness over motherhood-a constant state of mild regret that a delightful oneness seems always out of reach." Perfection is a horizon virtue, and our very approach to it reveals its immutable distance. the British psychoanalyst Rozsika Parker complains that in our open, modern society, the extent of maternal ambivalence is a dark secret. Most mothers treat their occasional wish to be rid of their children as if it were the equivalent of murder itself. Parker proposes that mothering requires two impulses-the impulse to hold on, and the impulse to push away. To be a successful mother you must nurture and love your child, but cannot smother and cling to your child. Mothering involves sailing between what Parker calls "the Scylla of intrusiveness and the Charybdis of neglect." She proposes that the sentimental idea of perfect synchrony between mother and child "can cast a sort of sadness over motherhood-a constant state of mild regret that a delightful oneness seems always out of reach." Perfection is a horizon virtue, and our very approach to it reveals its immutable distance.

The dark portion of maternal ambivalence toward typical children is posited as crucial to the child's individuation. But severely disabled children who will never become independent will not benefit from their parents' negative feelings, and so their situation demands an impossible state of emotional purity. Asking the parents of severely disabled children to feel less negative emotion than the parents of healthy children is ludicrous. My experience of these parents was that they all felt both love and despair. You cannot decide whether to be ambivalent. All you can decide is what to do with your ambivalence. Most of these parents have chosen to act on one side of the ambivalence they feel, and Julia Hollander chose to act on another side, but I am not persuaded that the ambivalence itself was so different from one of these families to the next. I am enough of a creature of my times to admire most the parents who kept their children and made brave sacrifices for them. I nonetheless esteem Julia Hollander for being honest with herself, and for making what all those other families did look like a choice. parents' negative feelings, and so their situation demands an impossible state of emotional purity. Asking the parents of severely disabled children to feel less negative emotion than the parents of healthy children is ludicrous. My experience of these parents was that they all felt both love and despair. You cannot decide whether to be ambivalent. All you can decide is what to do with your ambivalence. Most of these parents have chosen to act on one side of the ambivalence they feel, and Julia Hollander chose to act on another side, but I am not persuaded that the ambivalence itself was so different from one of these families to the next. I am enough of a creature of my times to admire most the parents who kept their children and made brave sacrifices for them. I nonetheless esteem Julia Hollander for being honest with herself, and for making what all those other families did look like a choice.

VIII

Prodigies

Being gifted and being disabled are surprisingly similar: isolating, mystifying, petrifying. One of the most startling patterns that emerged during my research was that many people come to value abnormalities that are ostensibly undesirable. Equally, ostensibly desirable variances are often daunting. Many prospective parents who dread the idea of a disabled child will long for an accomplished one. Such children may create beauty in the world; they may derive intense pleasure from their achievements; they may stretch their parents' lives into wonderful new alignments. Clever people often have clever sons and daughters, but dazzling brilliance is an aberration, as horizontal an identity as any in this study. Despite the past century's breakthroughs in psychology and neuroscience, prodigiousness and genius are as little understood as autism. Like parents of children who are severely challenged, parents of exceptionally talented children are custodians of children beyond their comprehension.

A prodigy prodigy is able to function at an advanced adult level in some domain before the age of twelve. I've used the word expansively to include anyone who develops a profound innate gift at an early age, even if he does so more gradually or less publicly than classic prodigies. is able to function at an advanced adult level in some domain before the age of twelve. I've used the word expansively to include anyone who develops a profound innate gift at an early age, even if he does so more gradually or less publicly than classic prodigies. Prodigy Prodigy derives from the Latin derives from the Latin prodigium, prodigium, a monster that violates the natural order. These people have differences so evident as to resemble a birth defect. The anxiety of abnormality goes beyond etymology. Few people wish to be identified as prodigies, especially given the correlation between prodigiousness and burnout, prodigiousness and freakishness. Prodigies are, in the eyes of many prodigies, pathetic, uncanny weirdos with little chance of lifetime social or professional success, their performances more party tricks than art. a monster that violates the natural order. These people have differences so evident as to resemble a birth defect. The anxiety of abnormality goes beyond etymology. Few people wish to be identified as prodigies, especially given the correlation between prodigiousness and burnout, prodigiousness and freakishness. Prodigies are, in the eyes of many prodigies, pathetic, uncanny weirdos with little chance of lifetime social or professional success, their performances more party tricks than art.

The designation prodigy prodigy usually reflects timing, while usually reflects timing, while genius genius reflects the ability to add something of value to human consciousness. Many reflects the ability to add something of value to human consciousness. Many people have genius without precocity, or prodigiousness without brilliance. The French poet Raymond Radiguet said, "Child prodigies exist just as there are extraordinary men. But they are rarely the same." Here, however, I've been engaged by a continuum that embraces both phenomena and have allowed the words considerable overlap. The subjects of this chapter indicate how the emergence of disproportionate ability, at any stage, may alter family dynamics, much as the emergence of schizophrenia or disability will do, at any stage. Premature attainment and ultimate merit are, however, very different identities. people have genius without precocity, or prodigiousness without brilliance. The French poet Raymond Radiguet said, "Child prodigies exist just as there are extraordinary men. But they are rarely the same." Here, however, I've been engaged by a continuum that embraces both phenomena and have allowed the words considerable overlap. The subjects of this chapter indicate how the emergence of disproportionate ability, at any stage, may alter family dynamics, much as the emergence of schizophrenia or disability will do, at any stage. Premature attainment and ultimate merit are, however, very different identities.

Like a disability, prodigiousness compels parents to redesign their lives around the special needs of their child. Once more, experts must be called in; once more, their primary strategies for dealing with the aberrance often undermine parental power. A child's prodigiousness requires his parents to seek out a new community of people with similar experience; they soon face the mainstreaming dilemma and must decide whether to place their children with intellectual peers too old to befriend them, or with age peers who will be bewildered and alienated by their achievements. Brilliance can be as much of an impediment to intimacy as any developmental anomaly, and the health and happiness of families of prodigies do not outstrip those of others in this book.

Prodigiousness manifests most often in athletics, mathematics, chess, and music; I have focused on musical prodigies here because my ability to understand music exceeds my comprehension of sports, math, or chess. A musical prodigy's development hinges on parental collaboration; without that support, the child would never gain access to an instrument or the training that even the most devout genius requires. As David Henry Feldman and Lynn T. Goldsmith, scholars in the field, have said, "A prodigy is a group enterprise."

A parent is the progenitor of much of a child's behavior, telling that child repeatedly who he has been, is, and could be, reconciling accomplishment and innocence. In constructing this narrative, parents often confuse the anomaly of developing fast with the objective of developing profoundly. There is no clear delineation between supporting and pressuring a child, between believing in your child and forcing your child to conform to what you imagine for him. You can damage prodigies by nurturing their talent at the expense of personal growth, or by cultivating general development at the expense of the special skill that might have given them the deepest fulfillment. You can make them feel that your love is contingent on their dazzling success, or that you don't care about their talent. Prodigies invite a sacrifice of the present to the putative future. If society's expectations for most children with profound differences are too low, expectations for prodigies are often perilously high. profound differences are too low, expectations for prodigies are often perilously high.

Musicality does not appear to convey an evolutionary advantage, yet every human society has music. The archaeologist Steven Mithen, in The Singing Neanderthals, The Singing Neanderthals, argues that music plays a crucial role in cognitive development. Recent work on infant-directed speech-the exaggerated tonalities that almost everyone uses in talking to babies-has shown that infants prefer these melodic enunciations. The scholar John Blacking has said that music "is there in the body, waiting to be brought out and developed." Members of one culture can differentiate the joyful and sorrowful music of another culture. This innate capacity for musical discernment notwithstanding, music is shaped by exposure, like any language; we absorb our culture's characteristic harmonic progressions and feel the fulfillment or reversal of learned musical expectations. The sociologist Robert Garfias contends that music and spoken language are a single system acquired in early infancy, and that music may be our "primary means of sustaining a process of socialization." argues that music plays a crucial role in cognitive development. Recent work on infant-directed speech-the exaggerated tonalities that almost everyone uses in talking to babies-has shown that infants prefer these melodic enunciations. The scholar John Blacking has said that music "is there in the body, waiting to be brought out and developed." Members of one culture can differentiate the joyful and sorrowful music of another culture. This innate capacity for musical discernment notwithstanding, music is shaped by exposure, like any language; we absorb our culture's characteristic harmonic progressions and feel the fulfillment or reversal of learned musical expectations. The sociologist Robert Garfias contends that music and spoken language are a single system acquired in early infancy, and that music may be our "primary means of sustaining a process of socialization."

Just as deaf children will begin to communicate with physical gestures, musical prodigies may use musical tones to convey information from the outset. For them, music is speech itself. It is said that Handel sang before he talked. The pianist Arthur Rubinstein would sing a mazurka when he wanted cake. John Sloboda, a music psychologist who studies why we respond emotionally to patterns of notes and rhythms, wrote, "Musical idioms are not languages, and do not have referential meaning in the way that languages such as English do. They do, however, have complex multi-leveled structural features which resemble syntax or grammar." This means that, in the sense proposed by the linguist Noam Chomsky, a deep structure of music in the brain can be vitalized by exposure to sounds. Leon Botstein, president of Bard College and himself a former prodigy, said, "What makes for a great musician is the emotional gravitation to music as an alternative form of linguistic communication." As with spoken and signed language, there must be not only a means to express, but also people to receive, respond, and encourage, which is why parental involvement is crucial to the emergence of this faculty.

That music is a first language does not guarantee brilliant use of that language, however, any more than American children's fluency in English makes them all poets.

For Evgeny Kissin, called Zhenya by those who know him, music was without question a first language, and one that his parents understood. In the mid-1970s, friends would visit the piano teacher Emilia Kissina in Moscow, and they would hear her young son play the piano. Frustrated at her reluctance to enroll him in a special academy ("They lose their childhood, they struggle so hard in those places," she would say), a friend arranged an appointment with Anna Pavlovna Kantor, of the famed Gnessin School, in 1976, when Zhenya was five. Kantor, too, was initially reluctant. "It was September," she recalled. "I said the exams were long over. 'When you meet the little boy,' this friend replied, 'you will understand that nothing is over.' One week after, this mother came with her son, with curls all over his head like an angel. He opened his bottomless eyes, and I saw a light in him. Without knowing how to read music or the names of notes, he played everything. I asked him to translate a story into music. I said that we were coming into a dark forest, full of wild animals, very scary, and then step by step the sun rises, and the birds start singing. He began in the piano's lower register, in a dark and dangerous place, and then, lighter and lighter, the birds awakening, the first rays of the sun, and finally a delightful, almost ecstatic melody, his hands running along the keys. I didn't want to teach him. Such imagination can be very fragile. But his mother said, 'Clever and faithful helper, don't worry. He is interested in whatever is new to him. Try.'" in Moscow, and they would hear her young son play the piano. Frustrated at her reluctance to enroll him in a special academy ("They lose their childhood, they struggle so hard in those places," she would say), a friend arranged an appointment with Anna Pavlovna Kantor, of the famed Gnessin School, in 1976, when Zhenya was five. Kantor, too, was initially reluctant. "It was September," she recalled. "I said the exams were long over. 'When you meet the little boy,' this friend replied, 'you will understand that nothing is over.' One week after, this mother came with her son, with curls all over his head like an angel. He opened his bottomless eyes, and I saw a light in him. Without knowing how to read music or the names of notes, he played everything. I asked him to translate a story into music. I said that we were coming into a dark forest, full of wild animals, very scary, and then step by step the sun rises, and the birds start singing. He began in the piano's lower register, in a dark and dangerous place, and then, lighter and lighter, the birds awakening, the first rays of the sun, and finally a delightful, almost ecstatic melody, his hands running along the keys. I didn't want to teach him. Such imagination can be very fragile. But his mother said, 'Clever and faithful helper, don't worry. He is interested in whatever is new to him. Try.'"

The Kissins lived the life of the Soviet Jewish intelligentsia: physically uncomfortable, constantly frustrating, the pleasures of the mind partially filling in for ordinary discomforts of the flesh and ideology's constant intrusions on the spirit. Their assumption was that Zhenya's sister, Alla, would play piano like her mother, while Zhenya would be an engineer like his father, Igor. At eleven months, Zhenya sang an entire Bach fugue that his sister had been practicing. He began to sing everything he heard. "It was rather embarrassing to take him out in the streets," Emilia recalled. "As it went on, relentless, nonstop-I became frightened by it."

At twenty-six months, Zhenya sat down at the piano and with one finger picked out some of the tunes he had been singing. The next day he did the same, and on the third day he played with both hands, using all his fingers. He would listen to LPs and immediately play back the music. "Chopin's ballades, he would play with those little hands, and Beethoven sonatas, Liszt's rhapsodies," his mother told me. At three, he began improvising. He especially liked to make musical portraits of people. "I would make the rest of the family guess whom I was playing," he recalled.

Kantor taught him in the Russian tradition that the imagination and spirit of the performer should be equal to that of the composer. "Anna Pavlovna's greatest triumph," Emilia explained, "is that she preserved his gift. She knew how to supplement what was there, never replace it." When I asked Zhenya how he had managed to avoid the burnout of so many wunderkinder, he said, "Simply this: I was brought up well." By the time he was seven, Zhenya had begun to write down his compositions. He played as though it were a necessary emancipation. "When I would return from school, I would, without taking my coat off, go to the piano and play," he said. "I made my mother understand that this was just what I needed." Zhenya used to make lists for Anna Pavlovna of the things he wanted to learn: "If I was asking for a difficult piece, I would put in brackets, 'Lenin said that difficult doesn't mean impossible.'" his gift. She knew how to supplement what was there, never replace it." When I asked Zhenya how he had managed to avoid the burnout of so many wunderkinder, he said, "Simply this: I was brought up well." By the time he was seven, Zhenya had begun to write down his compositions. He played as though it were a necessary emancipation. "When I would return from school, I would, without taking my coat off, go to the piano and play," he said. "I made my mother understand that this was just what I needed." Zhenya used to make lists for Anna Pavlovna of the things he wanted to learn: "If I was asking for a difficult piece, I would put in brackets, 'Lenin said that difficult doesn't mean impossible.'"

He played his first solo recital in May of 1983, at eleven. "I had such a feeling of relief," he recalled. "During intermission, I was impatient to return to the stage." After the concert, the wife of someone high up in the Composers Union congratulated teacher and pupil and promised an invitation to perform. This was a gateway to fame and comfort in the Soviet period of deprivation. Kantor, however, was uneasy. "He is still very young," she replied. "He shouldn't be overexposed." A stranger standing nearby interrupted and identified himself as a doctor. "When I saw in what a state of enthusiasm the boy returned to the stage for his encores, I realized it would be even more dangerous for him to become so overexcited inside, without release," he said. "He needs to perform." Zhenya played at the Union's House of Composers a month later.

When the preeminent conductor Daniel Barenboim came to Moscow the following January, he heard Zhenya play and arranged an invitation to Carnegie Hall. Musical performance enjoyed a special status among the arts in the Soviet Union because interpretive acts were less ideologically suspect than creative ones. But the government sought to keep its geniuses, so neither Zhenya nor his teacher was told about Carnegie Hall. A few months later, Zhenya played both of Chopin's piano concertos in Moscow. Afterward, Zhenya's parents told him that they had a surprise: a visit to a town in the country. Years later he learned that they had arranged the trip because they knew what a sensation the concert would create, and they didn't want him exposed to so much praise.

As Zhenya began to tour, he received private tutoring "in the usual subjects of history, literature, mathematics, dialectical materialism, Leninism, military science, and so on." He had never been very connected to other people his age, and the escape from ordinary schooling was a relief. In 1985, he left the USSR for the first time to play at a gala in East Berlin for leader Erich Honecker. "There were some circus performers, then I played the Schumann/Liszt Widmung Widmung and the Chopin and the Chopin E Minor Waltz, and then a magician did tricks," he recalled. Two years later, with travel restrictions easing under the new policy of glasnost, Zhenya played for the renowned conductor Herbert von Karajan, who pointed at him and said through tears, "Genius." Unlike many prodigies, he does not mourn his childhood. "Sometimes I regret that the course of my life was set so early," he told me. "There was never any way to resist it. But even if my career had begun later, music would always have been the only thing that was important to me." In 1990, at nineteen, he made his Carnegie Hall debut to astonishing reviews; in 1991 the family emigrated to New York. Anna Pavlovna Kantor came with them. E Minor Waltz, and then a magician did tricks," he recalled. Two years later, with travel restrictions easing under the new policy of glasnost, Zhenya played for the renowned conductor Herbert von Karajan, who pointed at him and said through tears, "Genius." Unlike many prodigies, he does not mourn his childhood. "Sometimes I regret that the course of my life was set so early," he told me. "There was never any way to resist it. But even if my career had begun later, music would always have been the only thing that was important to me." In 1990, at nineteen, he made his Carnegie Hall debut to astonishing reviews; in 1991 the family emigrated to New York. Anna Pavlovna Kantor came with them.

Zhenya had been described to me before we first met in 1995 as a moonchild-peculiar, closed, incomprehensible-and at that initial encounter, he explained clearly that he had little to say about himself beyond the facts. He has never much liked talking, or journalists, or the attention many celebrities find flattering. He is indifferent to his success, except insofar as it allows him to play more. Zhenya is too tall and too thin, with a strangely large head, enormous brown eyes, pale skin, and a mop of crazy brown hair in which you could mislay something. The overall effect is slightly gangly, and his bearing combines the tense and the beatific. Watching Zhenya sit down at the piano is like seeing a lamp plugged in: decorative though it may have seemed, only then does its real use become apparent. You feel less that he is pouring energy into the instrument than that he is receiving energy from it. "I don't know if I would be able to live if I suddenly became unable to play," he said. Zhenya plays as though it were a moral act that could redeem the world.

Throughout the nineties, Zhenya was always accompanied on tour by his mother and Kantor. The dynamic between the two women was both intimate and respectful; neither would critique Zhenya's performance without consulting the other. Upon arriving in any new venue, Zhenya would run through his program. Kantor would sit still to assess the performance, while Emilia would wander the hall to check acoustics. Zhenya was never given leeway to become arrogant. "They didn't want me seeing myself as a great prodigy," he said. "But when I deserved it, they always praised me, too." While his father and sister disappeared to the shadows, Zhenya stayed with his mother and piano teacher; one critic referred to them as a "three-headed beast."

If Zhenya plays the piano with the fluidity with which I talk, he talks with the awkwardness with which I play the piano. His profound intelligence and complex thoughts are indicated but not expressed by conversation. Zhenya has a slight speech impediment, a lingering on explosive consonants that burst forth like popping balloons. His utterances are saturated with pauses; nothing organic leads from one word to the next. When he was little, Kantor would explain something, then, when he didn't respond, would explain again, more elaborately. Finally she would say, "Have you understood?" Zhenya would say, "Yes, I understood a long time ago." It had not occurred to him to say so. When he was in his twenties, the concertmaster of an orchestra with which he was to perform noticed his practicing during the break and commented that she could not work without an occasional rest. Zhenya said, "That is why you are not a soloist." He is solicitous to a fault, but this ingenuous frankness pervades his communication; the critic Anne Midgette wrote in the consonants that burst forth like popping balloons. His utterances are saturated with pauses; nothing organic leads from one word to the next. When he was little, Kantor would explain something, then, when he didn't respond, would explain again, more elaborately. Finally she would say, "Have you understood?" Zhenya would say, "Yes, I understood a long time ago." It had not occurred to him to say so. When he was in his twenties, the concertmaster of an orchestra with which he was to perform noticed his practicing during the break and commented that she could not work without an occasional rest. Zhenya said, "That is why you are not a soloist." He is solicitous to a fault, but this ingenuous frankness pervades his communication; the critic Anne Midgette wrote in the Washington Post, Washington Post, "The performance was so compelling precisely because of the awkward poignancy that accompanied the technical mastery." "The performance was so compelling precisely because of the awkward poignancy that accompanied the technical mastery."

I had been toying with the idea of music as a first language for some time before I put it to Zhenya one day about a year after we met. We were sitting in his apartment on Manhattan's Upper West Side. Our meeting had been impromptu; I wanted to know something about the structure of a Rachmaninoff cadenza. "This one?" asked Zhenya, and played six bars. On the tape of our meeting, the emotional transition is more surprising than the shift from speech to music: the notes contain all the feeling absent from the words. I thought of a fish that flips around on the deck of a boat, then slips back into pure grace in the water. A yearning to be understood-the primary beauty of Zhenya's playing-distinguishes this from technical facility. Though he was playing only to indicate passages to which I had alluded, I felt for the first time that we were in full conversation; it was as intimate as a confidence or an embrace.

Zhenya told me, "Music conveys what I feel; I don't know how to convey through speech at all. I don't like to speak about the music, either: it speaks for itself." Music makes sense of the world for him, which is why it seems to make sense of the world for his audiences.

More than a decade after our first meeting, I asked him whether he had fully realized his own insights; Zhenya said simply, "Not yet." Later he added, "When I played as a child, it was simply that I loved music and was just playing the way I felt it. The better and the clearer my ideas become, the more I realize how difficult it is for me to achieve them. In the past I have been tempted to take up conducting, but now I don't want to, exactly because I realize how difficult it is to play the piano. That's why now I am more nervous before my concerts than I used to be." This is as fair a description as I've heard of how a prodigy grows up.

For Zhenya Kissin, music is the repository of intimacy; others deploy it to express what circumstances or temperament forbid them to utter. The pianist Yefim Bronfman, called Fima, a prototype for explosive genius, was born in Tashkent in 1958. His father, Naum Bronfman, had been drafted into the Soviet army and taken prisoner by the Germans; he escaped and managed to walk six hundred miles back to Moscow, where he was imprisoned and tortured by Stalin. Fima's mother, Polina, had been a Nazi prisoner in Poland. Naum was a violinist who taught in the Tashkent conservatory; Polina was a pianist who taught pupils at home. "We always suspected that somebody was listening to our conversations," Fima told me. "So the only way you could express yourself was through the music. That's what made us work so hard at it." Music became a realm of liberty, a medium in which it was possible for the Bronfmans to articulate everything they couldn't say in a bugged apartment. Part of the beauty of Fima's mature performance is that lingering urgency. If some musicians converse in music because their brains are not strongly wired for spoken language, Fima-who has never married and, like Zhenya Kissin, lives with his mother-remains in those original suppressed conversations and produces music with the exigency of having been denied speech for the most important of his early dialogues. Russian music of the twentieth century consistently exploited the expressive merits of ambiguity, of being able to say things that a bureaucrat cannot pin down and label subversive. Music can liberate people immured in almost any kind of silence.

The origin of genius has been a topic of philosophical debate for at least twenty-five hundred years. Plato believed that genius was bestowed by the gods upon passive human beings. Longinus proposed that it was something a person does-that the genius does not receive divinity, but creates it. John Locke (who, tellingly, had no children) thought that parents could engender genius; he said, "I imagine the minds of children as easily turn'd this or that way, as water itself." This idea from the Age of Reason, the period in which genius genius took on its current meaning, gave way to a Romantic image of ingenuity swathed in mystery. Immanuel Kant said, "If an author owes a product to his genius, he himself does not know how he came by the ideas for it." Arthur Schopenhauer said, "Talent hits a target no one else can hit; genius hits a target no one else can see." took on its current meaning, gave way to a Romantic image of ingenuity swathed in mystery. Immanuel Kant said, "If an author owes a product to his genius, he himself does not know how he came by the ideas for it." Arthur Schopenhauer said, "Talent hits a target no one else can hit; genius hits a target no one else can see."

In 1869, Francis Galton's Hereditary Genius Hereditary Genius announced that genius could not be achieved by anyone not born to it. Lewis M. Terman, a eugenicist and follower of Galton's, developed the Stanford-Binet announced that genius could not be achieved by anyone not born to it. Lewis M. Terman, a eugenicist and follower of Galton's, developed the Stanford-Binet Intelligence Test, which measured IQ, to categorize army recruits during World War I; after the armistice, he pressed to have it used on preschool-age children as a predictor of academic success. Because such quantifiable intelligence tests have built-in biases, measurements of low IQ appeared to demonstrate the inferiority of "undesirable" groups. Intelligence Test, which measured IQ, to categorize army recruits during World War I; after the armistice, he pressed to have it used on preschool-age children as a predictor of academic success. Because such quantifiable intelligence tests have built-in biases, measurements of low IQ appeared to demonstrate the inferiority of "undesirable" groups.

The question of how high IQ correlates to genius has been in debate ever since the tests were introduced. Terman followed a group of about fifteen hundred children with very high IQs; seventy years later, his critics claimed, they had accomplished no more than their socioeconomic status would have predicted. One child Terman had excluded as not bright enough, William Shockley, had coinvented the transistor and won the Nobel Prize in Physics. Psychometrics were nonetheless championed by the eugenicists. Paul Popenoe, who advocated forced sterilization of the "inferior," asserted that "no son of an unskilled laborer has ever become an eminent man of science in the United States." Hitler was well versed in the work and ideas of Galton and Popenoe; indeed, Popenoe enthusiastically collaborated with his Nazi counterparts, and defended them until it was no longer advantageous to do so. The Holocaust had a dampening effect on the notion of inherent supremacy, and in 1944, the anthropologist Alfred Kroeber suggested that genius was contextual. Why did fifth-century Athens, or the Italian Renaissance, or the Song Dynasty produce clusters of genius? Shouldn't it have a fixed population frequency?

If genius springs from genetics, a meritocracy is hardly more just than the divine right of kings; it, too, mythologizes inherent superiority. If genius results from labor, then brilliant people deserve the kudos and wealth they reap. The communist perspective is that everyone can be a genius if he will only work at it; the fascist perspective is that born geniuses are a different species from the rest of humanity. Many people fall short of their potential through lack of discipline, but a visit to a coal mine will amply demonstrate that hard work on its own neither constitutes genius nor guarantees riches. The history of high intelligence is no less political than the history of intellectual disability or of mental illness.

Leon Fleisher was born in 1928 in San Francisco, where his immigrant father had become a milliner who made hats for Lucille Ball. Leon's brother was the reluctant recipient of piano lessons, and Leon used to listen. "When my brother went out to play ball, I would go to the piano and play as the teacher wanted," Leon recalled. His parents soon switched the lessons to Leon, and before long he was studying with a Russian named Lev Schorr, "who was the San Francisco prodigy-maker. He felt it wasn't a good lesson until he made me cry. But he would take me out to lunch afterwards and feed me lamb chops." a Russian named Lev Schorr, "who was the San Francisco prodigy-maker. He felt it wasn't a good lesson until he made me cry. But he would take me out to lunch afterwards and feed me lamb chops."

In 1937, the conductor of the San Francisco symphony heard one of Leon's first recitals and decided that the boy should study in Italy with the renowned pianist Artur Schnabel. Schnabel politely declined; he was not interested in nine-year-old pupils. A few months later, the conductor invited Schnabel to dinner, snuck Leon in, and obliged Schnabel to listen. Schnabel immediately took Leon as a student, on the condition that he give no further concerts; Schnabel understood that Leon's mother wanted merely fame, and that he had to keep the boy focused on music. Leon and his mother went to Como in 1938. Schnabel's lessons were different from anything Leon had known. "The prodigy-makers separate technique and music," Leon said. "Schnabel maintained that technique is the ability to do what you want. He advocated sitting in a comfortable chair and studying the music before you started to play-not drumming it out before you'd thought how you'd like it to sound." Schnabel never had more than a half dozen students, and he made each attend the others' lessons. "He would do a whole lesson on twelve bars, and we would stagger out like inebriates," Leon recalled, "filled not just with information, but with inspiration. Schnabel dealt in transcendence."

At the brink of World War II, Italy was hardly the place for a Jewish pupil to study with a Jewish pianist, and before long Schnabel sent Leon back home. Schnabel emigrated to New York soon thereafter, so Leon's father had to take a job in an East Coast factory. "That became a heavy responsibility for a kid to carry around," Leon said. But his mother was singularly determined. "She gave me a choice between being the first Jewish president or a great pianist," he added ruefully.

Leon Fleisher made his Carnegie Hall debut in 1944 at sixteen and quickly established himself. His career rise was meteoric, and three years later, Schnabel told him that his studies were over. "I was desolate when he dismissed me," Leon said. "Then, I remember hearing on the radio one of his Beethoven sonata recordings, and reveling in how extraordinarily beautiful it was. But I wasn't sure that I would have done it quite that way."

Leon had a twenty-year blaze of glory before he was struck, at thirty-six, with focal dystonia, a neurological condition that causes involuntary muscle contractions, which made it impossible for him to use the third and fourth fingers of his right hand. Focal dystonia is associated with relentless repetition of fine-motor-skill patterns despite the onset of pain. Leon's son, the jazz musician Julian Fleisher, explained, "He used his right hand relentlessly because his mother told him to; he used it until it broke." Leon went through a depression; his marriage fell apart. "It took a couple of years of despair before I realized that my connection was to music, not to being a two-handed piano player," he said. He reinvented himself as a conductor, a teacher, and a performer of the limited but pyrotechnic left-hand piano repertoire. used his right hand relentlessly because his mother told him to; he used it until it broke." Leon went through a depression; his marriage fell apart. "It took a couple of years of despair before I realized that my connection was to music, not to being a two-handed piano player," he said. He reinvented himself as a conductor, a teacher, and a performer of the limited but pyrotechnic left-hand piano repertoire.