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On disability and gratitude
Tout comprendre, c’est tout pardonner (“to know all is to forgive all”) is a questionable saying on the merits, but an excellent premise for weepy thrillers. Jodi Picoult is high priestess of this genre. A bestselling author of sixteen novels on such subjects as school shootings, the death penalty, and date rape, she puts her characters through harrowing ordeals in the service of unpacking some contortuplicated social problem. The Rashomon effect ever present in these scenarios is resolved by means of the modern arch-virtue empathy, as well as a killer twist or two. (Please be advised that many of these will be spoiled without warning in the following pages.) Picoult’s books are must-reads for people who want to contemplate big gnarly controversies and have a good hard cry at the same time.
Several of her novels deal with topics of bioethical interest — organ donation, euthanasia, recovered memories, and DNA forensics — and three particularly with the embattled threshold at the start of life: how it is crossed, and who is crossing it. These decisions, which for millennia belonged to no one, were taken up by self-appointed experts in the early twentieth century before being handed off to parents in more recent years. In the course of the three books — Second Glance, Handle with Care, and My Sister’s Keeper, which was also recently made into a movie — Picoult covers both ends of the story, and has the chutzpah to impeach the parents. Not for any lovelessness — far from it — but, if anything, for a too-dogged love, one that blinds them to the significance of their efforts to spare their children suffering. But the tale begins with a more abstract philanthropy.
Second Glance, one of Picoult’s few books to stay away from the courtroom and its claustrophobic psychodrama, is a romantic, time-bending romp of a ghost story. The unlikely backdrop is the American eugenics project of the 1920s and ’30s. “The science of human betterment through genetic improvement,” as one character calls it, aimed to eliminate unseemly features from the population by sterilizing people with a suspect family history. All told, thirty-three states enacted eugenics laws in which sterilization was sometimes couched as a voluntary procedure — with the incentive, say, of release from a mental or correctional institution — but more often was openly coerced, even performed on people without their knowledge. Defending the state’s intimate authority over “probable potential parent[s] of socially inadequate offspring,” Oliver Wendell Holmes famously ruled in the 1927 Supreme Court case Buck v. Bell that “it is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind.”
In the early twentieth century, the work of a quiet Austrian priest experimenting in a pea garden had just been rediscovered, and soon mushroomed across the intellectual landscape. Forward-thinkers latched onto heredity as the answer to questions Mendel would have never posed; it seemed the dark secret at the bottom of all sorts of itchy social problems — a scientifically ordained destiny. Why not, instead of expending futile effort on those problems generation after generation, simply go straight to the source and prevent them from perpetuating?
Henry F. Perkins, a zoology professor at the University of Vermont and sometime-president of the American Eugenics Society, was head of his state’s efforts to “improve” the population, overseeing a major genealogical study begun in 1927. In conjunction with various aid societies and social work groups, Perkins masterminded the Eugenics Survey, a project seeking to ferret out Vermont families of medical or social concern and recommend them for sterilization. The effort was largely staffed by bright-eyed would-be reformers, condescending in their outlook but at heart concerned for general welfare. It also happened to dovetail with plain old-fashioned racism, and for the most part occupied a large swathe of murky territory in between the two. Vermont’s Abenaki Indians and French Canadians were overwhelmingly targeted by the survey, their problems attributed to bad “germ plasm” rather than the disarray of their rural slums (itself sometimes the result of other lofty policies). To save their people from the social workers, the Abenaki dispersed into the general population, hiding out behind Anglo-Saxon spouses and last names. In obscurity, their kinship and connection to their history soon all but flickered out.
These real events and people provide the background for the main characters we meet in Second Glance, all of whom are fictional. Perkins, who appears only in excerpts from his notes, is the chief historical figure, while the fictional Spencer Pike is his right-hand man, a professor himself and field worker for the Eugenics Survey. Little does Spencer know that his pregnant wife Lia, bearing the proud future of the new Vermont, is actually half Abenaki.
The plot, a very intricate creation, is driven by a second set of characters in the present day unraveling a mystery surrounding Lia’s death. (All of the twenty-first-century characters and events are fictional.) These include Spencer’s unwitting granddaughter Meredith, a specialist in preimplantation genetic diagnosis (PGD); Ethan, a boy with a rare genetic disorder that makes sunlight deadly; and Ross, his uncle, who lost his fiancée years ago and became a “paranormal investigator” to try to trace her on the other side.
As it turns out, there is a ghost. Developers wanting to turn a patch of Vermont forest into a strip mall are stymied by a slew of kooky incidents, which the remnants of the Abenaki say are warning signs not to disgrace their burial ground. The contractor hires Ross the ghost-buster to wave his magic wand and make the problem go away. In the course of his investigation, he keeps running into an elusive woman, and to his consternation falls in love all over again — only to discover that she, Lia, passed away in 1932, something left undone. A series of clues leads Ross to Lia and Spencer’s long-lost granddaughter, Meredith the geneticist.
Unlike Spencer’s project, there is no racialist tinge to Meredith’s work, nor are any of her patients threatened or coerced. They come to her, because they are terrified of having very ill children. Meredith’s PGD work involves assembling embryos in vitro and testing them for genetic disorders, implanting only those that prove unimpaired. She hangs a sign on her office door that says “The Last Resort,” and has a million and one stories of couples who had been through heartbreaking experiences before they came to her and had a healthy baby. But for all of her beneficent intent, what she does is not heal diseases but destroy outright the embryos that have them.
Ross’s ghost world is meant as a counterweight to the scientific establishment represented by the eugenicists, an intimation that science “can’t explain everything” and “isn’t always right.” Love too, Ross insists, cannot be seen or touched or measured or explained. This is misleading, not least because do you believe in love and do you believe in ghosts are far from the same question. Even so, and even if our world had all the supernatural elements of Second Glance, as a meaningful critique it is completely off the mark.
The underlying disquiet is the sense that such a massive project with the imprimatur of science, on the cutting edge of “advanced” theory and ostensibly based on empirical analysis, could have been so devastating. The answer to this is not that science does not know what it knows, nor that the information collected by eugenicists was not “real” science, though much of it was not. The genealogical charts were of course much cruder than today’s chromosomal genetics, but they cannot be judged by the standards of future discoveries; science is always in the process of refining its methods and revising its conclusions. The way the charts were compiled was influenced by the bigotry of the compilers, and many of the targets — including Carrie Buck, the woman at the center of the signal case Buck v. Bell — were not in fact afflicted with the various ailments attributed to them, so in that sense the science was not valid. But what if it was?
If it was, it would be more like Meredith’s project, unclouded by faulty data and ugly attitudes towards other races. And the foil to what she represents is not the ghosts, but Ethan.
Nine-year-old Ethan has a very rare genetic disease that makes his skin extremely sensitive to ultraviolet rays, so sensitive that most people with the disorder die of cancer in their teens. He has turned his mother’s world literally upside down — they live nocturnally, and his father took off years ago grousing that “no one is allergic to the g*******d sun.” He is a high-spirited, bouncy kid who helps his uncle hunt for spooks and wants to build a half-pipe for his skateboard in their driveway. He is the love of his mother’s life.
There was…a time Shelby would have looked at Ethan and herself and felt pity. But Shelby could hardly remember what her existence had been like before this illness was flung over them like a fishing net; and truth be told, any life she’d lived before Ethan could not have been much of a life at all.
These sentiments are echoed in a later Picoult book, Handle with Care, wherein a woman with a disabled daughter reflects on their situation as if she’s addressing her:
Other people look at me and think: That poor woman; she has a child with a disability. But all I see when I look at you is the girl who had memorized all the words to Queen’s “Bohemian Rhapsody” by the time she was three, the girl who crawls into bed with me whenever there’s a thunderstorm — not because you’re afraid but because I am….I would never have wished for an able-bodied child, because that child would have been someone who wasn’t you.
These children are the living representatives of the embryos that clinics quietly throw away, deeming that the hardships they will face outweigh the value of their lives. Worried about biotechnological power getting into “the wrong hands,” Meredith keeps asking who gets to choose? What kind of parents, what kind of scientists, are going to remake the human race? She overlooks the more important question: why should anyone at all?
Menacing, cartoonish pro-life protesters figure in the background here, as in fact they do in all these books. The protesters’ major failing seems to be that they don’t recognize someone or other’s good intentions — and Picoult is always on the hunt for good intentions (though she does not try unduly hard with Spencer). An abundance of sympathetic motives does not exonerate her sinning characters, however, nor does their democratic distribution mean that the universe is morally unstrung. Rather, it disturbingly suggests that such things matter much less than we’d like to think they do. Grave evil can be perpetrated with a dollop of good intentions, a huge dose of carelessness, and only a speck of cunning. One need only follow the section epigraphs in Second Glance to watch this at work. Picoult dug up material from pamphlets, speeches, local papers, legislative and judicial records, and eugenicists’ notes and correspondence to plant throughout the book. This collection evokes learned worthies behind lecterns solemnly appealing to the latest scientific findings, ladies in nice hats assembling at city hall to wring their hands about humanity, field workers decked out to embark among their fellow human beings as if they’re going on safari, all of them shot through with a fatal breed of philanthropic arrogance. A sampling — the first a letter from H. H. Laughlin of the Eugenics Research Association to Harriet Abbott of the Vermont Children’s Aid Society in 1925:
A comprehensive eugenics survey needs to locate, first, the inadequate in the state; second, to find out, if possible, why they exist.
From a University of Vermont course description in 1923:
PRINCIPLES OF HEREDITY: Prof. H. F. Perkins. Lecture course with conference and report exercises covering the principles of elementary embryology, the physical basis of inheritance, principles of breeding experiments, and eugenics, the practical application of heredity to mankind. Text used: Newman’s Readings in Evolution, Genetics, and Eugenics.
From the American Eugenics Society’s 1926 Eugenics Catechism:
Q. Why sterilize?
A. To rid the race of those likely to transmit the dysgenic tendencies to which they are subject. To decrease the need for charity of a certain form. To reduce taxes. To help alleviate misery and suffering. To do what Nature would do under natural conditions, but more humanely. Sterilization is not a punitive measure. It is strictly protective.
From “Mrs. Bickford” in the Burlington Free Press, 1931:
We are so careful in breeding our cattle to get good breeds yet we give this human procreation no thought.
And then, ever so slyly, Picoult slips in the following:
In the voelkisch State the voelkisch view of life has finally to succeed in bringing about that nobler era when men see their care no longer in the better breeding of dogs, horses and cats, but rather in the uplifting of mankind itself, an era in which the one knowingly and silently renounces, and the other gladly gives and sacrifices.
That is from Mein Kampf. The Nazis’ debt to a great body of American eugenics theory is well known, and was only embarrassing to the Americans after the fact. Psychologist Henry Herbert Goddard prophesied as much in an eerie 1934 letter to H. F. Perkins:
We have carried on for several years and what have we accomplished? It was good fun as long as we could afford it, but now it is a different matter. If Hitler succeeds in his wholesale sterilization, it will be a demonstration that will carry eugenics farther than a hundred Eugenics Societies could. If he makes a fiasco of it, it will set the movement back where a hundred eugenic societies can never resurrect it.
True to forecast, the American eugenicists went scuttling out of sight in aggrieved confusion in the wake of World War II. They were less chagrined at the part in it they themselves had played — they did not acknowledge that — than that their project and their reputations were too tainted in the public mind to continue their work. The institutions that had housed them backed away from their legacy, renaming programs, redirecting funding, interring archives, and polishing their statements of purpose for a redemptive makeover. And yet, sterilizations were still carried out for decades to come. Several of the state eugenics laws remain on the books. Buck v. Bell has not been overturned. The idea that some lives are not worth living, never put to rest, lurked in the shadows of society like an unsettled spirit, waiting for an opportunity to go about its unfinished business. History is full of ghosts.
While some couples look to PGD because they do not want a sick child, Picoult’s book My Sister’s Keeper deals with a family that employs it because they already have one and would do anything — anything — to save her.
Kate Fitzgerald was diagnosed with leukemia at age two. She needed new bone marrow, but her older brother was not a tissue match. Waiting for a match to pop up on the national donor registry, her parents, Sara and Brian, knew they could run out of time — so they conceived another child, an embryo screened before implantation to ensure that she would be a match. Stem cells from her umbilical cord blood, harvested at birth, were used to put her sister in remission. And so, with no cost to her and tremendous benefit to Kate, baby Anna was welcomed into the family.
It was supposed to be a one-time, painless donation — but when Kate relapses a few years later and needs a special blood transfusion, the Fitzgeralds naturally turn to little Anna. “I’d give her half my heart, for God’s sake, if it helped,” Sara explains, but no one can help but Anna, and something as simple as a blood donation for something as important as her sister’s life seems like an easy call. When the first one doesn’t do the trick, they go back for a second and a third.
A year later, other treatments exhausted, Kate needs a bone marrow transplant: an invasive procedure for the donor, and one that at that point only offers a 50 percent chance of survival for the recipient. But stacked against otherwise certain death for Kate, it seems like a perfectly natural choice — indeed, the only choice. And so it goes, treatment after treatment, each one more demanding, consuming Anna’s childhood and making Kate’s possible.
Finally, fourteen years after she first got sick, her body wearing out from everything it’s been through, Kate goes into renal failure. But instead of donating a kidney as she is expected to, Anna finds herself a lawyer and sues for medical emancipation.
(In real life, no known instance of a “savior sibling” family has reached this point. The first child to be conceived and screened as a match for his sister was born to a Colorado family in 2000. He and the handful of others born around the world since then have only ever provided cord blood and sometimes bone marrow. But they are very young. Some countries prohibit PGD for the purpose of actual organ donation. In the United Kingdom, PGD is not permitted for tissue-matching purposes unless the embryo can also be screened for its sibling’s disorder, with the rationale that the screening should provide some benefit to the embryo itself — although in fact, screening never benefits an embryo. The ones that turn up healthy were always going to be that way, and the ones that don’t clearly don’t benefit, either. In the United States, PGD is not regulated.)
The Fitzgeralds then must confront in court the consequences of their choice to bring a child into the world to save another — consequences they seem not to have anticipated because, although without her sister’s illness Anna would not have existed, they have never considered her only a donation bank for Kate. As is frequently the case with assisted reproduction, the circumstances of conception contain seeds of problems that can blossom later on, but that pale next to the value of a whole new life on earth. In many respects the Fitzgeralds are a normal family, with plenty of happy memories and fun sisterly pranks. And it is very difficult to say where along the line they clearly crossed into the wrong. There is, of course, the original screening, and the three other embryos created in the batch with Anna discarded because they were not useful. (In reality, there would more likely be one or two dozen before a match was found.) These forgotten embryos are also casualties of Brian and Sara’s exploitative behavior, although they do not figure in Picoult’s presentation of the moral drama. Past this point, however, there is a steep, smooth slope, the end of which no one remotely pictured at the beginning. Anna’s parents could have done a better job of asking her permission, perhaps, but for some of the procedures she was too young to grasp the situation, and then by the time that she was old enough to understand, she also understood that there was only one right answer. Even if the judge rules in her favor, Anna intrinsically bears the responsibility for her sister’s life.
At one point during the trial, the hospital’s chief ethicist is trotted out to enlighten the proceedings. Trained to measure everything in terms of patients’ bills of rights and criteria for informed consent, he explains that his committee’s job is to ensure that treatment accords with six abstract principles: autonomy, veracity, fidelity, beneficence, nonmaleficence, and justice. As desirable as all these surely are, they seem totally removed from the mess at hand. The breakthrough moment is supposed to be when it is revealed that the committee has never met to discuss Anna’s care, although she has been an inpatient many times. Much discussion — indeed, the whole premise of the lawsuit — centers on who has been and should be accorded what choices. In that respect, Anna has just cause for grievance. But the fury with which they all pursue the question betrays it as a proxy for injustices they cannot take to court.
“Western Bioethics,” to which the committeeman appeals, has to its name both a rich philosophical tradition and vast mounds of fusty, jargon-laced criteria, as well as all kinds of political baggage. But in a crisis, nobody is thinking of all that, beyond — if anything — the simplest of appeals to God. My Sister’s Keeper takes the form of a psychological documentary, with different characters narrating different chapters, a form that sympathetically captures the way a family in a chronic state of emergency finds itself sundered from any sense of direction except getting to the next day. For so many years, they have been following will-o’-the-wisps through the valley of the shadow of death.
To add to the confusion, an eleventh-hour revelation flips the story over: Anna filed her suit at her ailing sister’s instigation. Fed up with “the hospitals and the chemo and the radiation and the whole freaking thing,” Kate begged her sister not to keep her going. Among the major characters, she is the only one who seemingly does not have a voice in the story, until it becomes apparent that an unsigned prologue — a story of a three-year-old’s thwarted sororicide — implicitly attributed to Anna was actually Kate’s. “I didn’t seem to exist, except in relation to her,” she says, and her silence as everyone is wrangling over her fate while exhaustively explaining their perspectives bears this out. She wants, for once, to be the one to “save” her sister.
Gradually, Kate, her siblings, and her father collect themselves to say goodbye, but her mother isn’t giving up. Feeling that if someone believes Kate is going to live, she will, Sara is determined to be that person and do anything it takes until the happy day that she can say “I told you so.” When, after all, is it okay to accept your child’s death?
Conversely, is it possibly defensible to say your child should already have died? Handle with Care, Picoult’s latest novel, is the story of a “wrongful birth suit” — a disgusting idea if there ever was one. In these cases, parents of a disabled child file a medical malpractice claim against their obstetrician, charging that their child’s illness ought to have been identified in time for an abortion. The idea is that the doctor’s negligence cost them a lot of money, since sick children are expensive to care for, and for that they deserve damages.
That is the legal basis for it, anyway. One prefers not to know how many parents there are out there who actually wish that they had had abortions, though these cases require them to testify to that effect. The predominant motive, however, is to provide more comfortably for a child whom they really do love. At a loss for how to pay for therapies and other accommodations that would greatly improve his life, as well as worried about how he will be taken care of when they are no longer able, the lure of malpractice settlements offers such parents a desperate way out. What is the comfort of one cherished kid against a little plundering of an infinitely flush system?
The system is not, of course, infinitely flush; malpractice insurance premiums for OB-GYNs are exploding due to just this very possibility, raising costs across the board for patients and even putting many doctors out of business, which makes good obstetrical care that much harder to obtain. It also exerts a none-too-subtle force in the direction of aggressive screening for conditions for which there is no prenatal “treatment” other than abortion. When you testify that you wish your child wasn’t born, you may or may not be lying; but what you are certainly saying is that the next child to come along with his condition should not be brought into the world.
Handle with Care does not deal with these systemic impacts but rather with the immediate human implications: the effects the noble lie — if that is what it is — has on the family, the people around them, and most of all the child herself, who is perky and intelligent and old enough to know what’s going on.
Charlotte O’Keefe, wife of Sean and mother of Amelia, wanted another baby like crazy. She turned to her best friend Piper, an OB-GYN, for help conceiving, but just as she was about to begin infertility treatment she found out she was pregnant. Everyone was thrilled, until a twenty-seven-week ultrasound turned up several fractures and a diagnosis of osteogenesis imperfecta (OI), “brittle bone disease.” It was not known whether the baby, Willow, would even survive birth, but if she did she would face in her lifetime hundreds of painful breaks. From that day on, Charlotte has been in a constant state of whiplash, one minute wandering over to the neighbor to talk about aborting children doomed to suffer, the next pleading with whatever power may be listening, “Let me keep her, and you can take everything else I have.” The devil is the sort to take up that kind of offer; and when you bargain with the devil, he collects.
Willow is born with the non-lethal form of OI, and together with her family she embarks on the exhausting project of living. On a rare trip to Disney World one year, she falls and breaks her leg — sadly not an unusual occurrence for the O’Keefes, but one that raises suspicions of abuse in local hospital authorities, who call in child services when they discover how many breaks she’s had. Sean, manfully affronted, storms into a personal injuries lawyer’s office bawling about suing practically everyone in Florida. The attorney regrets to inform him that he doesn’t have a case; people were just doing their jobs. But, he purrs, taking stock of Willow, there is something else.
At first, the O’Keefes are absolutely horrified. But then Charlotte gets to thinking: “What if it was someone’s fault?” “Someone ought to be held responsible,” the lawyer cajoles. It seems clear that with an innocent kid debilitated and the family struggling the way it is, someone somewhere has made a whopping blunder. “Why should you pay for someone else’s mistake?” For years, Charlotte has vigilantly pushed back the suspicion that it’s her fault for wanting so much to have another baby; Sean has darkly guessed that it’s his fault, something in his DNA, since Amelia (Charlotte’s daughter by another man) was born healthy; Willow, sensing that her mom is suddenly furious about her illness, assumes that it’s her fault and plaintively promises, “I’ll be better, I’ll be perfect.” Nobody dares draw the most direct and obvious line of responsibility; and besides, you cannot name God in a tort. So instead, Charlotte settles on Piper, whose only failing was to miss a potential indicator of OI at the eighteen-week ultrasound.
Charlotte alienates everyone by going forward with the case: her best friend, whom she betrays; her husband, who wants no part of the project, and not only moves out but agrees to testify for the defense; Amelia, who resorts to self-destructive hijinks in a forlorn attempt to not be invisible; the greater OI community, who boo her out of a convention when they realize who she is; and Willow, whose interpretation of events is that her mother wants to send her back. No matter, Charlotte reasons with grim determination. Years down the road, when Willow has everything she needs, she won’t remember “what was said in a courtroom when she was just a baby.” As for the hatred she incurs, she chalks it up to the high, heroic cost of motherhood (though she is unreasonably surprised with every new reaction of hurt or disgust, always reeling as if she’s been smacked in the face). Like Sara Fitzgerald, she lets her obligation — as she sees it — to her frailest daughter burn all others to ash, thinking she can rise above the ordinary claims of right and wrong on a transcendent pillar of unsung mother-love.
While the suit is partly opportunistic and partly retributive, the necessary ruse is to decry the absence of a “choice” at the earlier ultrasound. Charlotte has been cozened, and if only she were accorded her rightful agency, her world would not be in shambles. Her daughter would not be in pain, her marriage would not be dissolving, she would be a successful pastry chef instead of this unrecognizable person being reviled on the nightly news, there would be nothing to regret, and no one would be blindsided by disaster because they would all have carefully chosen the way their lives are going to be.
Of course, nobody really buys this; and while glorifying choice may seem like a way to regain authority over an overwhelming situation, clamoring after one that slipped away six years ago is just a very vocal form of helplessness. But more importantly, the deepest things that shape a life are totally unchosen, and can no more be reversed by legal decisions than a small bird can turn back a roaring wind. The O’Keefes’ and Fitzgeralds’ recourse to a courtroom to protest their destiny seems pathetically mundane.
Picoult, by some literary law of karma, awards Charlotte and Sara the consequences of choices that they have made — the thematic, though not causal, culmination of ideas these mothers set in motion. Charlotte somehow lands an eight-million-dollar settlement, but the check is never cashed. One afternoon, sneaking out onto the thinly frozen pond in their backyard, Willow falls through the ice and becomes trapped underneath. “This time,” she thinks, as everything else fades, “it was not me who broke.” Her mother, who envisioned under oath a life without her, has the rest of time to ponder the meaning of be careful what you wish for.
Sara, for her part, loses her case to Anna. The family is awkwardly reconciled before heading off to visit Kate while Anna stays back to sign the paperwork. It is a dangerously rainy day. On her way to meet them, in her lawyer’s car, Anna is crushed by a truck skidding through an intersection, and the girl who was born to be taken for granted is gone in an instant. Her kidney saves her sister’s life — and, miraculously, it is the last procedure Kate needs. Eight years later, she is fully recovered; and while her baffled doctor has a theory about the success of various experimental therapies, “I know better,” she says. “It is that someone had to go, and Anna took my place.”
In the recent movie version, their positions are reversed. Director Nick Cassavetes took the liberty of killing Kate in her sleep and sending the family off to Montana every year to commune with her spirit. (Incidentally, Cassavetes also directed that mother of all chick flicks, The Notebook. Picoult has declared many times that Nicholas Sparks’s novel of that name is the worst book she’s ever read.) Despite keen performances by Cameron Diaz and Sofia Vassilieva as Sara and Kate, and cutie Abigail Breslin holding down the fort as Anna, the film is incoherent. Shooting for a different destination with all the same directions, it declines to answer its own central question. A coda in which the lawyer (Alec Baldwin) stops by to hand off Anna’s medical emancipation papers as she runs through a sunny field is surreal. So Anna won her case. So what? The movie collapses the double meaning of the title: for the first 409 pages of the book, one girl is fighting for the right to bear the mark of Cain; but in the end it is the other, an organic memorial, who becomes her sister’s keeper.
Fans of the novel are disappointed, to be sure — although when you come right down to it, lamenting the loss of a horrific car crash is passing odd. Picoult says in interviews that she is attracted to this type of story out of an admittedly superstitious feeling that grieving fictional calamities will keep the real kind at bay. Apart from cathartic voodoo, the moral to arise from the wreckage is this: Be grateful for what you have, or that too will be taken. Be very, truly thankful for each and every moment that something terrible has not yet happened to you — or if it has, that it is not worse than it is.
This frantic directionlessness of trying to appease capricious fate is not useful in thinking through what authority we ought to have over the genetic lottery. But of course, that is not Picoult’s real contribution. Her reigning virtue is compassion: compassion for people acting in ways we might find unconscionable, compassion as a possible explanation for those very actions, compassion as the most important principle as we as a society determine how to proceed. In taking accidents of birth into our own compassionate hands, can we not do a better job than random fate? For we are compassionate, and that is a fine thing and not to be scorned.
But while fate is blind, compassion is myopic, seeing only what is most immediate, and only on one side. As a standalone principle it has been marshaled in support of practices from the silly to the sinister. At the point of entry for a new life, when we cannot foresee its course nor judge what we do see, a better virtue than compassion to guide us would be humility. Life is not so cheap that anybody can determine it should not be begun at all. Nor is it so precious that any clever measure to cling to it must be justified. It is a transient and often troublesome blessing for everyone graced with it, much improved in its particulars by Picoult’s master principle, fundamentally precarious, sometimes exhilarating, never free entirely of sorrow, ultimately fleeting, always dear.