1.Standing at the DMV counter for a new license, I grit my teeth against a vivid mental picture of my mangled body being pulled from a car wreck. I am about to check “yes” for organ donor. As pen hits paper, I shudder at images of sharp tools flashing at the accident scene, removing my eyeballs and kidneys. I resist the urge to ask the clerk behind the counter if the medics will absolutely ensure I’m dead before removing my organs. My fear is mitigated by knowing that there is such great need for organs; I’ve recently learned this by teaching bioethics to nursing and premedical students. When the shiny plastic card is handed to me, I look at the tiny blue heart enclosing “Organ Donor” in red and feel a flush of satisfaction: I’ve done the right thing. Two recent books, Karen Russell’s Sleep Donation and Margaret Atwood’s The Heart Goes Last, probe our conflicted feelings about giving parts of ourselves to others. Russell’s novella uses the delightfully sly conceit of an insomnia epidemic to dramatize the interpersonal dynamics of donation. Protagonist Trish Edgewater works for Slumber Corps, a nonprofit funded and run by former CEOs Rudy and Jim Storch; she secures sleep donations by telling recruits the heart-wrenching story of her sister who succumbed to fatal sleep deprivation. In Atwood’s novel, a corporation disguised as a collective is secretly euthanizing prisoners and selling their organs. These two sci-fi tales pose pressing ethical questions that affect us now: What motivates donation? How does donation work in a for-profit health care industry? What are our obligations to others and what are our rights to our organs and tissues? Karen Russell and I discussed these questions over the phone on the day before the election; in the post-election reality, their urgency has intensified. 2. Anxiety over organ harvesting has a long and ghoulish life in our collective imagination. Historian Katharine Park, in Secrets of Woman, notes the persistent cultural narrative of early dissectionists in Renaissance Italy shunting corpses out of trapdoors in their laboratories when the authorities came around. Mary Shelley was thinking of both public autopsies on executed criminals and the vulture eating Prometheus’s liver when she described Victor Frankenstein assembling human cadaver parts into a new creature. A foreigner draining good English blood from Lucy Westenra -- and transfusions from four men -- sets off an international vampire hunt in Dracula. In our century, Kazuo Ishiguro in Never Let Me Go imagines an eerily plausible world in which people clone themselves for their own future transplant needs. Private organ and tissue banking is already a thriving industry; only the completion of human cloning technology seems to stand between Ishiguro’s medical dystopia and us. Sleep Donation is Russell’s first foray into “straight science fiction.” As a young reader, she was influenced by Atwood’s The Handmaid’s Tale; John Wyndham’s The Day of the Triffids, a Cold War era thriller about bioengineered plants that revolt against humans; and Frank Herbert's 1965 novel Dune. Of the last, she said, “It’s an amazing, prescient epic about ecological fragility, monopolistic guilds, and an interstellar community addicted to ‘spice’ the way we are dependent on fossil fuels. Dune showed me how an alternate universe can hold up a mirror to our own reality.” In her novella, the idea of dream donation “gets at the global transmission of ideas -- that accelerated connectivity of the Internet age, and the increasingly porous boundaries of this new world,” Russell said. 3. While drafting Sleep Donation, Russell researched organ and blood donation and read up on the history of the AIDS epidemic. The novella captures the turbulence of a new disease outbreak. Scientists race to find the cause and develop a cure. Meanwhile, people seek their own solutions. Some “file for dream bankruptcy” and wait to be approved for a sleep donation; others resort to medical tourism -- seeking treatment abroad; and a fringe of Night Worlds spring up complete with nostrum sellers and social spots catering to those who are awake all night. In her recruitment, Trish has stumbled across a particularly valuable sleep donor, Baby A. Her pure sleep makes her a universal donor. Trish forms a bond with her mother, Mrs. Harkonnen, who volunteers Baby A to give the maximum amount of sleep to the Corps. The baby’s father, however, resists the unrestricted donation. The conflict between Mrs. and Mr. Harkonnen raises questions about motives for donation. Like blood donation, sleep donation does not seem to harm the donor; blood and sleep are renewable resources. “What has always felt so beautiful to me about blood donation is that it's so literal and simple, a very visceral way to give and to receive. You get to participate in the circulatory system of a human community, a communal body,” Russell said. But more murky is the question of manipulating goodwill and consent to secure bodily gifts. I’ve been able to avoid consenting to post-mortem organ harvesting for most of my adult life because the U.S. follows an opt-in system; those wishing to donate organs after death must give explicit permission via a living will, driver’s license, or donor registry under the Uniform Anatomical Gift Act -- a piece of legislation that sounds like it could have been invented by Russell or Atwood. Other countries like Austria have an opt-out system, which presumes consent and requires explicit refusal to donate; these countries have about a 90 percent donation rate. In an opt-in system, recruiting donors is paramount, as Sleep Donation dramatizes. Mrs. Harkonnen insists on donating the maximum amount of sleep from her baby, but her husband’s objections make us consider the limits of our obligations to others. In her meditative essays in On Immunity, Eula Biss recounts her experience of blood loss during labor. She has Type O negative blood, making her a universal donor. Like Baby A, the rarity of her “anatomical gift” exponentially increases its value because it can help anyone, regardless of the recipient’s blood type. At the same time, Biss can only receive Type O negative transfusions. Her understanding, exquisitely woven throughout the essays in this volume, that we are all somatically interdependent -- and interdependently vulnerable -- motivates her to donate blood. She has benefitted, and so has learned with visceral immediacy what her body has needed to survive from another human body. Her motive, at least in part, is reciprocation. Biss’s intention seems to be enlightened volunteerism. Sleep Donation, on the other hand, highlights the ethical problem of emotional manipulation for a “good cause.” Trish uses emotional inducements to form relationships with donors by performing the maudlin tale of her sister’s fatal insomnia. She grieves afresh with every pitch -- her anguish is genuine, and the Storches exploit her as their most valuable recruiter. Corporate motives of maximizing gain lurk ominously in this gift economy. 4. The Storches’ Slumber Corps and Atwood’s Orwellian corporation, Consilience, play to our wariness of big business. Of Sleep Donation, Russell said, “I wanted to explore this tension that I think many people feel today between the desire towards openness and generosity, and a mistrust of institutions and corporations, a fear that you will get sapped dry by the for-profit world.” The instincts that Russell and Atwood tap into may be justified in the real-world case of the human tissue industry. Tissues are more easily harvested, stored, and transplanted than whole organs, and unless a donor specifies otherwise, consent to organ donation also permits tissue harvesting. It is illegal for citizens to buy or sell organs and tissues. The law prohibiting organ and tissue sales by citizens is intended to avoid incentivizing body part sales (other than blood, sperm, and eggs, all legally sold by individuals), which could affect people disproportionately according to income. It could also further reduce donation of biomaterials in our inefficient opt-in system, experts postulate, if people will hold out for the highest bid and/or always expect remuneration. These intentions seem ethical, given the huge economic and health disparities in the U.S. What donors often don’t know, however, is that the tissue industry is explicitly and legally for-profit -- a fact that surprised even Russell in our recent conversation. The industry generates more than $1 billion annually. Corporations such as biotech companies routinely buy organs, tissues, cells, and medical record information from medical centers and government banks in order to develop new treatments for profit. Organ donors are not the only contributors to tissue harvests. If you’ve ever wondered what happens to your blood or tissues removed for regular care or testing, or where your newborn’s umbilical cord went, they all get banked for research and potential sale. At a recent doctor’s appointment, I signed a Notice of Privacy Practices (4 pages of miniscule font), which effectively secures my consent for my tissues and fluids to be banked and used at the facility’s discretion without notifying or compensating me. Every doctor’s office has a similar waiver for patients to sign before being seen, but most patients are unaware of what they are consenting to. We are all unwitting donors. Perhaps because the reality of profiteering from human parts is already here, in The Heart Goes Last, Atwood bumps the ethics of human body part sales into darker territory. Her corporation, Consilience, bypasses the complicated dance of donation and instead kidnaps people from outside the town, euthanizes them, and sells their organs to a nursing home franchise. Most chillingly, the citizens perform the euthanasia without question because they are hostages to the middle-class comforts provided by Consilience against the lawlessness and poverty that had set in after a realistically-limned economic collapse. Atwood is having a dark laugh at our dependence on capitalist luxuries when Charmaine dutifully carries out what she thinks is the execution of her own husband without knowing that all of her victim’s organs are going to be sold. 5. I’ve done the right thing, I tell myself to quiet down the gory, TV medical drama-informed mental image of medics harvesting my organs beside my crumpled car. Both the fictional Mrs. Harkonnen and the real Eula Biss offer antidotes to corporate profiteering. They are persuaded to donate for personal reasons -- desires to respond to human needs not quantifiable in dollar amounts, to return a life-saving gift. My own decision to donate was based on seeing how many young adults just learning to become healthcare providers had registered themselves as donors. In class, even before we tackled the details of opt-in versus opt-out systems and ethical questions of informed consent, the nursing students had very practical understandings of the egregious organ shortage in the U.S. They didn’t share my fierce attachment to my somatic wholeness after death. (There are prohibitions in some cultures to opening the body before and after death; cultural variation in rules about bodily wholeness must be respected in any donation system). Some of my students explained their reasoning for being such willing donors: if I’m dead, I don’t need my parts, but they could save other lives. Listening to others showed me a new way to think about my dead body as a gift. We are exposed to new perspectives through live encounters, but imaginary ones may hold even more potential for stimulating ethical deliberation. Russell agrees: “I think fiction is a realm where people can play out different scenarios, engage with these questions in a way where a certain kind of stakes are reduced (‘it's just fiction’) so it becomes safe to really take a look at the unexamined assumptions that underlie our values and decisions.” There are individual stakes, and then there are corporate stakes. Russell and Atwood both avenge the sinister business of bioprofiteering in their sci-fi worlds. The Storches sell some of Baby A’s pure samples to Japanese researchers and make a huge profit. Atwood’s corporate creeps are planning to sell infant blood and scale up their sale of prisoner organs to the rich, preparing an empire that will easily flourish in the lawless post-crash climate. And in both novels, the plots are foiled by female whistle-blowers. In Atwood’s dystopia, corporate vampirism is stopped -- but only for one corporation. The novel leaves open the possibility that it could happen with other companies because the conditions are still there. The ending of Sleep Donation is ambiguous. Russell said, “My original desire was simply to tell a story, the story of this particular character, Trish Edgewater, who is confronted with a terrible dilemma, and the questions arose as I drafted forward. [For the ending,] I wanted to leave open both possibilities, that Trish brings down the Storches, and that Trish ends up getting scapegoated. ‘Rewarding’ that move with a happy ending (or a happier one than Trish going to prison), or ‘punishing’ it by showing that Trish loses everything [including her friendship with Mrs. Harkonnen] -- either of those moves would have felt somehow reductive to me, as if I were only writing this to show people the ‘right’ thing to do, making it a blunt moral fable, instead of a world to explore those questions about giving and receiving that haunt me still (and that I hope will haunt the reader).” Despite the ambiguity of Russell’s ending, both novels’ revolutionary endings give us hope; they offer an antidote to what Russell described in an email the day after the election as the “corrosive cynicism that causes people to feel justified in ‘opting out’ of caring, trying. What a shame it is,” she added, “when our best impulses, the deep and genuine desire to give to one another, cannot find an outlet that we trust.” Storytelling is perhaps our best inoculation against a donation dystopia of selfishness and unwitting complicity in a market of human parts; Russell emphasized that although she did research, she “wanted to be careful that the parallel between sleep donation and organ donation did not feel too one-to-one because sleep donation also felt analogous to storytelling generally. When you read or receive a story, you embody that author’s dream. Stories and novels have always given me a perch in an alternate world that lets me see something that was invisible to me when I was zipped into my own tight-fitting skin, pursuing my own interests.” Sleep Donation and The Heart Goes Last let us see ethical questions taking shape around bodily ownership and gifting, questions with enormous stakes that are often invisible in everyday cultural narratives about health and healthcare. Image Credit: Wikimedia Commons.
1. The Brontë Parsonage Museum lies in the remote Yorkshire village of Haworth, perched above vast, unpopulated moors. Arriving on a drizzly evening in late November, having changed trains several times and debarked in Keighley (pronounced KEITH-ley), I jounced over the narrow country streets in a bus, bleary with jet lag, until a grandmotherly woman nudged me to get off. The bus left me at the bottom of a high street so steep that its original pavers had installed the bricks short-end-up to give horses more traction. I lugged my suitcase up between the iron-grey stone and lath cottages lining the street. The Black Bull tavern appeared on my left, and an old-fashioned pharmacy with chickens scratching around its front door on my right. Once installed in my room at Weaver’s, a bed and breakfast over a low-ceilinged, hearth-warmed pub, I looked out the window. There before me was the parsonage, facing the famous graveyard and Rev. Brontë’s church. My breath caught in my chest. I was about 100 feet from the place where Charlotte Brontë -- born 200 years ago today -- lived, worked, and died. Isolated in bucolic Haworth, the Brontës did not have society connections. Patrick Brontë moved the family to the remote Yorkshire village in 1820 when he became resident parish priest. Within five years, his wife, Maria, and his two oldest children, Maria and Elizabeth, were dead. In the parsonage, his four youngest children grew up with books and created their own magazines and illustrated sagas. By adulthood, Charlotte, Emily, and Anne had written seven novels and several volumes of poetry. Their brother Branwell painted and earned money by tutoring the children of local gentry. The young artists had to forge their own connections. When Charlotte was 20, she wrote to poet laureate Robert Southey for feedback on her writing; Southey admitted she had ability but chided her: “literature cannot be the business of a woman’s life: & it ought not to be.” Years later, after a half dozen rejections of her first manuscript The Professor, Charlotte penned Jane Eyre: An Autobiography “edited by Currer Bell” over the summer of 1847. When it came out that October, it was an overnight sensation, immediately drawing the admiration of William Makepeace Thackeray and the bombast of anti-feminists. Even before the pseudonym was unveiled, London literati were beside themselves over the question of authorship. In the Quarterly Review, Elizabeth Rigby rankled that the book could not have been written by a woman because Jane defies the essence of femininity and Christian piety; “and if by no woman, [the book] is certainly by no artist,” she added. Between the novel’s publication and her death eight years later, Charlotte, surviving the loss of all three siblings in the space of eight months during 1848 to 1849, became a one-woman publicity agency. She visited London, met the already famous political economist Harriet Martineau, and entertained rising novelist Elizabeth Gaskell, a prime figure in a new subgenre of fiction, the Condition of England novel (to which Shirley also belongs). Gaskell would soon become Brontë’s posthumous biographer. When Life of Charlotte Brontë hit bookstores in 1857, devotees arrived in Haworth, peeping into the windows as Rev. Patrick Brontë ate his meals alone. So began a fiercely devoted fan culture that has only gained momentum over the past century and a half -- with pilgrimages like mine and with a steady stream of literary tributes such as this year’s The Madwoman Upstairs by Catherine Lowell, an example of biofiction distinctive to Brontëana. 2. I spent my first evening in Haworth walking around the parsonage’s lovely garden-bordered front yard, gazing at the strange churchyard with its gravestones laid flat, and admiring the cornflower blue clock-face. Behind it, the Yorkshire hills, green even in late November, sloped away and rose again in the distance, giving the impression that I was alone on a pinnacle in the middle of nowhere, England. The chilly air was still except for a rooster crowing. There was no sign or sound of life from this century. I scanned the upper windows of the parsonage, wondering which was Charlotte’s room. The next day, Ann Dinsdale, collections manager of the Brontë Parsonage Museum, gave me a private tour. The four main rooms downstairs are preserved and have been recreated to appear as they were when Charlotte and her father occupied the house after Emily and Anne’s deaths. The parlor on the left sported red curtains and the round table at which the sisters wrote. Across the hall was Rev. Brontë’s study, and the kitchen where Emily and Anne would write diary papers every few years and where Emily would teach herself German while she waited for bread to rise. Behind the parlor was a converted pantry that Charlotte had renovated for her husband, her father’s curate, Arthur Bell Nicholls. On the landing upstairs, the iconic portrait of the Brontë sisters by Branwell was displayed -- a copy, Ms. Dinsdale told me. Behind the pigment that Branwell used to paint himself out of the group portrait, his face just faintly appeared. Upstairs were rooms occupied by Aunt Elizabeth Branwell, their mother’s sister, who came to raise the girls when Mrs. Brontë died. In a narrow room between Aunt Branwell’s chamber and Rev. Brontë’s bedroom, young Charlotte, Emily, Anne, and Branwell fashioned themselves into authors and cultural critics. There they invented tales about imaginary kingdoms, Gondal and Angria, and produced minute, hand-sewn and -lettered booklets that parodied London magazines, complete with advertisements. Their juvenilia is full of military sagas, political drama, and romance -- the result of their father’s unusual library containing volumes of racy poetry by Lord Byron, history books full of battles, and earnest political treatises. Rev. Brontë’s library was unusually cosmopolitan for a clergyman or indeed most literate households in the early-19th century. (Books were expensive and often limited to The Pilgrim’s Progress and the Bible). This library, along with Patrick’s encouragement of his children’s art, music, and writing, may be the single greatest reason that the Brontë sisters became poets and novelists -- along with the storytelling of their beloved servant Tabitha Aykroyd. According to Dinsdale, Tabitha would relate the village gossip and tell sordid tales that were not necessarily edited for children’s ears. Other than a brief stint at a school for clergymen’s daughters, they were educated at home in a provincial village of miners and wool workers. But in order to become juvenile authors and the young women who crafted tales of insubordinate heroines and reckless heroes, they had to survive. On a shelf in a downstairs back room, Ms. Dindale pointed out a pair of cloth mules with platform soles; these were for protecting dainty shoes and low hemlines from the muck of the village streets. She didn’t elaborate, but offered a copy of a public health study conducted a few years before Charlotte died. In 1850, the average life expectancy in Haworth was 25.8 years. Because it was a town “periodically visited by typhus fever,” in that year, Haworth commissioned a report by Benjamin H. Babbage. Babbage was an inspector in the new field of public health, which had gotten underway in London as a consequence of new scientific attention to urban slums and what middle-class Victorians perceived as the moral and physical degradation of the poor. Rev. Brontë assisted with Babbage’s investigation. The inspector found open sewage and water supply contamination plaguing Haworth. Between 1840 and 1847, the year Jane Eyre was published, 42 percent of children died before the age of six. The mortality rate and life expectancy can be explained by Babbage’s findings, which he declared rivaled the poorest and sickliest neighborhoods of London. One detail from his report speaks volumes about the need for platform shoes. He describes a public privy perched over the highest part of the main street: The cesspit of this privy lies below it, and opens by a small door into the main street; occasionally this door is burst open by the superincumbent weight of night soil and ashes, and they overflow into the public street, and at all times a disgusting effluvium escapes through this door into the street. Within two yards of this cesspit door there is a tap for a supply of water to the neighboring houses. More privies like these were ranged along the main street. Additionally, behind many houses were midden steads -- 73 in all -- containing household garbage, human waste, and pig manure in piles that seeped through walls and even covered the low roofs of houses built into the slopes. Looking at the platform shoes, my mind formed an image of Charlotte, whose small frame had materialized for me in the petite summer dress on display upstairs, walking over streams of sewage. I also realized that my impression of having been teleported to Charlotte’s time on the still night before, with misty fresh air and a cock crowing somewhere, was delusional. To live in Haworth during her time would have made anyone from the 21st century chronically nauseated. Rev. Brontë visited the multitudes of sick parishioners during outbreaks of typhus and officiated at countless funerals. He had been interested in medicine before entering divinity school and remained an amateur scholar of medicine and a keen observer of his family’s health for the rest of their lives. After his wife and older daughters died, he kept his remaining children at home, but his vigilance could not save them; all four died of tuberculosis, another scourge of the era. Branwell died first, at age 31, after a long battle with morphine and alcohol, becoming so inebriated that Rev. Brontë kept him in his own bed at night for fear that Branwell would set the house on fire. Anne would write The Tenant of Wildfell Hall as a cautionary tale about a husband’s alcoholism; there are also traces of Branwell in Heathcliff and Rochester. Emily died next, age 29, at home, without medical attention in accordance with her preference. Anne died next; she was sent to recuperate, on her father’s scanty salary, to oceanside Scarborough, but died there; she is the only sibling buried away from the chapel in Haworth. All four of the younger Brontë children lived past the average age of 25.8 years, though not by much. Looking into the parlor as Ms. Dinsdale pointed out the round table where the sisters wrote, we then turned to a black horsehair sofa upon which Emily had expired. Tuberculosis is a lung disease that causes wasting; before antibiotics, “consumptives” essentially drowned in sputum and blood. I stared in awe and grief at Emily’s severe-looking sofa, just feet away from the vital table around which the sisters had paced as they read their days’ work to one other. When Charlotte was his last remaining child, Rev. Brontë renovated the parsonage roof, thinking that the dampness in its lathes could be the source of his children’s fatal illnesses. He also monitored Charlotte very closely. Already showing symptoms of decline, she was attended by a local surgeon who diagnosed inflammation of the liver. Charlotte complained in a letter to her best friend, “part of this sickness is owing to his medicine.” She was correct; Dr. William Ruddock gave her mercury pills, still the mainstay of allopathic medication. “Salivating” and “purging” a patient were believed to carry illness out of the body by increasing the release of fluids produced naturally during sickness. This late continuation of humoral theory was competing with newer ideas, such as those of her father’s home medical manual Graham’s Domestic Medicine. Thomas J. Graham put more stock in regulating the bowels, and Rev. Brontë, keeping up with developments in medicine, did too. In the margins, he carefully documented his own observations and evidence from other authors about the healthy frequency of solid and liquid elimination. In her last novel, Villette, Charlotte made her heroine’s first, failed love interest a cardboard character named John Graham Bretton. Struggling to write the book between 1851 and 1852, Charlotte was reeling from her siblings’ deaths and an episode of what seems to be a lifelong propensity to major depression, plus the debilitating mercury treatments. The whole tale of Lucy Snowe is an illness and grief narrative, wrought in stunning intertextual allusions and even richer wordplay than Jane Eyre. Not surprisingly, Dr. John cannot cure Lucy’s hypochondria (used in its literal sense, “poor health,” in this era) because he believes her nightmares and anxiety are caused by constipation. In frustration, Lucy declares, “Happiness is not a potato, to be planted in mould, and tilled with manure” and finds a new love interest. Despite her father’s solicitousness, Charlotte succumbed to her illness in 1855. Rev. Brontë died in 1861, aged 84, somehow eluding the tuberculosis that had claimed his entire family and the typhus that killed his parishioners. His belongings, including his children’s manuscripts, scattered (they brought especially high prices in the U.S.) but thanks to the Brontë Society some decades later, they began to make their way back to Haworth. Cousins of family servant Martha Brown opened the first museum. In rooms above a Haworth bank, they displayed items that had been donated, loaned, or purchased by the new Society. In 1928, the parsonage went up for sale and Sir James Roberts, a local textile tycoon who had known the family, purchased and donated it to the Society. That August, thousands of people in cloche hats and fedoras crammed the narrow village streets to witness the opening. Since then, the Society, the mission of which is to “promote the Brontës’ literary legacy within contemporary society” and to purchase and collect Brontëana, has brought hundreds of thousands of visitors from around the world, making the remote parsonage second only to William Shakespeare’s museum in Stratford-upon-Avon. This cultivation of the legacy is rooted in arts and programming, but it is also anchored in 150 years of recalling back to the parsonage every artifact of the Brontës’ short lives so that fans and scholars can imagine the sisters’ lives in Haworth. On my own pilgrimage, I was unexpectedly and utterly enthralled by the physical traces of Charlotte and her siblings -- a curl of Charlotte’s hair, blond and auburn, tucked into a tiny, black-edged mourning envelope looked as if it had been cut that morning; her diminutive dress and shoes; the large metal collar of Emily’s beloved dog Keeper, who attended her funeral in the church; paint boxes and sewing kits; and even their father’s carefully annotated home medical manual all struck me with their intimacy. Quietly reveling among these homely objects, the wild gothic expressions of Jane Eyre, Wuthering Heights, and The Tenant of Wildfell Hall seemed to me extraordinary to have emanated from the unconnected daughters of a clergyman in a remote village above the sheep-dotted Yorkshire hills. Yet these moors, repurposed into the home of Cathy and Heathcliff and the refuge of Jane Eyre escaping Rochester’s tyranny, were the healthiest alternative to Haworth itself in the insalubrious days before indoor plumbing and germ theory. The fresh, sweet scent of heather would have smelled heavenly in that malodorous age. Image Credit: Wikipedia.