Peter Singer maintains that what is in question is 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 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 cogito, ergo sum 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 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.”
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.
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.
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 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.
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. “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.
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