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Health | The Atlantic
Health | The Atlantic
The Conjoined Twins Who Refused to Be ‘Fixed’
When George Schappell came out as transgender in 2007, he joined a population at the center of medical and ethical controversy. Schappell was used to this. He had been born in West Reading, Pennsylvania, in 1961 with the left side of his face, some of his skull, and a portion of his brain conjoined with those of his sister, Lori. Following doctors’ advice, their parents put them in an institution for children with intellectual disabilities.At the time, children with “birth defects” were routinely consigned to what the activist Harriet McBryde Johnson termed the “disability gulag,” a network of facilities designed in part to care for such children and in part to keep them out of the public view. Conditions could be abysmal, but even better-maintained facilities cut residents off from society and deprived them of autonomy. In their early 20s, the twins fought their way out by enlisting the help of Pennsylvania’s first lady, whose stepson was disabled.[From the September 2023 issue: The ones we sent away]As George and Lori Schappell navigated independence, the growing disability-rights movement began to allow many other people with disabilities to do the same. Their physical bodies did not fit easily into the structures of a world that was not designed to receive them. George and Lori, who died last month at 62, spent their adult lives finding their way through that world. But American society is still struggling to determine whether to accommodate bodies like theirs—bodies that fail to conform to standards of gender, ability, and even individuality.In the 1980s and early ’90s, while the Schappells were establishing their independent lives, the American public was enthralled by a procession of sensationalized operations to separate conjoined twins. These experimental procedures could be brutal. Many conjoined twins did not come apart easily; in many cases they have an odd number of limbs or organs shared between them. Patrick and Benjamin Binder, whose 1987 separation at six months made a young Ben Carson a star, both sustained profound neurological damage from the surgery and never spoke. In 1994, surgeons sacrificed newborn Amy Lakeberg to save her twin, but Angela died less than a year later, never having left the hospital. Lin and Win Htut shared a single pair of genitals; in 1984 doctors designated the more “aggressive” of the 2-year-old boys to retain their penis, while the other was given a surgically constructed vagina and reassigned as a girl. By the time he was 10, he had reasserted his identity as a boy.Other twins’ separation surgeries were the subject of occasional controversy from the 1980s into the early 2000s. Doctors justified them as giving children a chance at a “normal” life, and usually portrayed them as well-intentioned even if they failed. But many were not clearly medically necessary. Ethicists such as Alice Dreger, the author One of Us: Conjoined Twins and the Future of Normal, argued against a risky medical “cure” performed on children who could not consent to it. Meanwhile, the Schappells were living in their own apartment. George’s spina bifida had impeded his growth, so he was much smaller than his twin; they got around with George perched on a barstool-height wheelchair so he could roll along beside Lori as she walked. Lori got a job at a hospital, and they pursued hobbies (George: country music; Lori: bowling) and made friends (Lori also dated). They kept pets, including a Chihuahua and a fish whom they named George years before George chose that name as his own. They went to bars, where a bartender once refused service to George because he looked underage, but agreed to pour drinks for Lori. They did not live “normal” lives: They lived their lives.[Read: Why is it so hard to find jobs for disabled workers?]But as the public became familiar with the model of separation for conjoined twins, the Schappells found themselves asked, repeatedly, to explain their continued conjoined existence. In 1992, they gave what seem to be their first interviews, to The Philadelphia Inquirer and the Philadelphia Daily News; the news hook was local doctors’ decision not to separate another pair of twins who were joined, like the Schappells, at the head. The Schappells initially explained to reporters that medical science hadn’t been advanced enough for separation when they'd been born. But later they would stress that they wouldn’t have wanted to be separated even if they had been given the choice. “I don’t believe in separation,” Lori told the Los Angeles Times in 2002. “I think you are messing with God’s work.”Not long after those first articles were published, the twins began appearing more frequently in the media. They did the rounds of the great 1990s freak shows—Maury, Jerry Springer, Sally, Howard Stern. They became the most visible non-separated conjoined twins of the era. Observers, journalists, and talk-show audiences tended to overwrite the Schappells with their own perceptions. The twins were inspirational, or pitiable; they epitomized cooperation, or individualism. I can’t imagine your lives, people would say, even as they proceeded to do just that. The Virginia Quarterly Review once published a poem written in Lori’s voice, in which the poet took it upon herself to warn an imagined observer: “You don’t know the forest / of two minds bound by weeds / grown from one to the other, / the synapses like bees / cross-pollinating / our honeyed brain.”The twins, though, did not seem overly concerned about whether others understood them, and they did not go out of their way to change the world. They were not activists. George pursued a career as a country singer; they traveled; they grew older. When their Chihuahua lost the use of its hind legs, George made it a tiny wheelchair. The world slowly changed around them. Institutionalization for disabled people is less common today, though it still happens.[From the March 2023 issue: Society tells me to celebrate my disability. What if I don’t want to?]Conjoined twins now occupy far less space in the public imagination. The pair currently most famous are Abby and Brittany Hensel, who have constructed their public image as so aggressively unexceptional that a reality show about their lives was, in at least one viewer’s words, “super boring.” (Their public performance of ordinariness is not always successful; earlier this year, when Today reported that Abby had gotten married, the reaction was predictable, mingling pity and prurience.)Separation surgeries are still performed today, but they are no longer the subject of intense public debate. Instead, one of the most visible medical controversies of our era, gender transition for young people, is related to another aspect of George’s identity. Although children who identify as trans aren’t eligible for medical interventions before the onset of puberty and only some choose hormones or surgery in their late teens, the idea of little kids receiving those treatments has helped inflame panic over whether they should be allowed at all, even for adults.In the case of 2-year-old Win Htut, surgical transition was seen as restoring “normality.” But today, medical transition is often seen as creating difference. When you consider that history, a devotion to “normality” seems to be the primary motivator behind a recent raft of state laws outlawing transition care for transgender youth. After all, most of these laws carve out exceptions for children born with ambiguous genitalia. “Corrective” genital operations are still a routine practice for intersex infants, despite the protests of intersex adults, who say they would not have chosen to be surgically altered.[Read: Young trans children know who they are]George didn’t say much publicly about being trans, and never mentioned running up against any anti-trans bigotry. But when the twins’ obituaries ran on the website of a local funeral home last month, they were described as their parents’ “daughters,” and George was listed under his birth name. Whatever the intent in doing so, the obituary posthumously obscured his identity by correcting his “abnormality”—despite the fact that, in life, the twins had never apologized for being different.
theatlantic.com
A Grand Experiment in Human Reproduction
For a long time, having children has been a young person’s game. Although ancient records are sparse, researchers estimate that, for most of human history, women most typically conceived their first child in their late teens or early 20s and stopped having kids shortly thereafter.But in recent decades, people around the world, especially in wealthy, developed countries, have been starting their families later and later. Since the 1970s, American women have on average delayed the beginning of parenthood from age 21 to 27; Korean women have nudged the number past 32. As more women have kids in their 40s, the average age at which women give birth to any of their kids is now above 30, or fast approaching it, in most high-income nations.Rama Singh, an evolutionary biologist at McMaster University, in Canada, thinks that if women keep having babies later in life, another fundamental reproductive stage could change: Women might start to enter menopause later too. That age currently sits around 50, a figure that some researchers believe has held since the genesis of our species. But to Singh’s mind, no ironclad biological law is stopping women’s reproductive years from stretching far past that threshold. If women decide to keep having kids at older ages, he told me, one day, hundreds of thousands of years from now, menopause could—theoretically—entirely disappear.Singh’s viewpoint is not mainstream in his field. But shifts in human childbearing behavior aren’t the only reason that menopause may be on the move. Humans are, on the whole, living longer now, and are in several ways healthier than our ancient ancestors. And in the past few decades, especially, researchers have made technological leaps that enable them to tinker like never before with how people’s bodies function and age. All of these factors might well combine to alter menopause’s timeline. It’s a grand experiment in human reproduction, and scientists don’t yet know what the result might be.So far, scientists have only scant evidence that the age of onset for menopause has begun to drift. Just a few studies, mostly tracking trends from recent decades, have noted a shift on the order of a year or two among women in certain Western countries, including the U.S. and Finland. Singh, though, thinks that could be just the start. Menopause can come on anywhere from a person’s 30s to their 60s, and the timing appears to be heavily influenced by genetics. That variation suggests some evolutionary wiggle room. If healthy kids keep being born to older and older parents, “I could see the age of menopause getting later,” Megan Arnot, an anthropologist at University College London, told me.Singh’s idea assumes that menopause is not necessary for humans—or any animal, for that matter—to survive. And if a species’ primary directive is to perpetuate itself, a lifespan that substantially exceeds fertility does seem paradoxical. Researchers have found lengthy post-reproductive lifespans in only a handful of other creatures—among them, five species of toothed whales, plus a single population of wild chimpanzees. But women consistently spend a third to half of their life in menopause, the most documented in any mammal.In humans, menopause occurs around the time when ovaries contain fewer than about 1,000 eggs, at which point ovulation halts and bodywide levels of hormones such as estrogen plummet. But there’s no biological imperative for female reproductive capacity to flame out after five decades of life. Each human woman is born with some 1 to 2 million eggs—comparable to what researchers have estimated in elephants, which remain fertile well into their 60s and 70s. Nor do animal eggs appear to have a built-in expiration date: Certain whales, for instance, have been documented bearing offspring past the age of 100.[Read: Why killer whales (and humans) go through menopause]This disconnect has led some researchers to conclude that menopause is an unfortunate evolutionary accident. Maybe, as some have argued, menopause is a by-product of long lifespans evolving so quickly that the ovaries didn’t catch up. But many women have survived well past menopause for the bulk of human history. Singh contends that menopause is a side effect of men preferring to mate with younger women, allowing fertility-compromising mutations to accumulate in aged females. (Had women been the ones to seek out only younger men, he told me, men would have evolved their own version of menopause.) Others disagree: Arnot told me that, if anything, many of today’s men may prefer younger women because fertility declines with age, rather than the other way around.But the preponderance of evidence supports menopause being beneficial to the species it’s evolved in, including us, Francisco Úbeda de Torres, a mathematical biologist at Royal Holloway, University of London, told me. Certainly, menopause was important enough that it appears to have arisen multiple times—at least four separate times among whales alone, Samuel Ellis, a biologist at the University of Exeter, told me.One of the most prominent and well-backed ideas about why revolves around grandmothering. Maybe menopause evolved to rid older women of the burden of fertility, freeing up their time and energy to allow them to help their offspring raise their own needy kids. In human populations around the world, grandmother input has clearly boosted the survival of younger generations; the same appears to be true among orcas and other toothed whales. Kristen Hawkes, an anthropologist at the University of Utah, argues that the influence of menopausal grandmothering was so immense that it helped us grow bigger brains and shaped the family structures that still govern modern societies; it is, she told me, sufficient to explain menopause in humans, and what has made us the people we are today.[From the October 2019 issue: The secret power of menopause]Some researchers suspect that menopause may have other perks. Kevin Langergraber, an ecologist at Arizona State University, points out that certain populations of chimpanzees can also live well past menopause, even though their species doesn’t really grandmother at all. In chimpanzees and some other animals, he told me, menopause might help reduce the competition for resources between mothers and their children as they simultaneously try to raise young offspring.Regardless of the precise reasons, menopause may be deeply ingrained in our lineage—so much so that it could be difficult to adjust or undo. After all this time of living with an early end to ovulation, there is probably “no single master time-giver” switch that could be flipped to simply extend human female fertility, Michael Cant, an evolutionary biologist at the University of Exeter, told me.Perhaps, though, menopause’s timeline could still change—not on scales of hundreds of thousands of years, but within generations. Malnutrition and smoking, for instance, are linked to an early sunsetting of menses, while contraceptive use may push the age of menopause onset back—potentially because of the ways in which these factors can affect hormones. Menopause also tends to occur earlier among women of lower socioeconomic status and with less education. Accordingly, interventions as simple as improving childhood nutrition might be enough to raise the average start of menopause in certain parts of the world, Lynnette Sievert, an anthropologist at the University of Massachusetts at Amherst, told me.[Read: Why so many accidental pregnancies happen in your 40s]Changes such as those would likely operate mostly on the margins—perhaps closing some of the gaps between poorer and richer nations, which can span about five years. Bigger shifts, experts told me, would probably require medical innovation that can slow, halt, or even reverse the premature aging of the ovaries, and maintain a person’s prior levels of estrogen and other reproductive hormones. Kara Goldman, an obstetrician-gynecologist and a reproductive scientist at Northwestern University, told me that one key to the ovarian fountain of youth might be finding drugs to preserve the structures that house immature eggs in a kind of dormant early state. Other researchers see promise in rejuvenating the tissues that maintain eggs in a healthy state. Still others are generating cells and hormones in the lab in an attempt to supplement what the aging female body naturally loses. Deena Emera, an evolutionary geneticist at the Buck Institute for Research on Aging, in California, thinks some of the best inspiration could come from species that stay fertile very late into life. Bowhead whales, for instance, can reproduce past the age of 100—and don’t seem to succumb to cancer. Maybe, Emera told me, they’re especially good at repairing DNA damage in reproductive and nonreproductive cells alike.Some women may welcome an extended interval in which to consider having kids, but Goldman and Emera are most focused on minimizing menopause’s health costs. Studies have repeatedly linked the menopause-related drop in hormones to declines in bone health; some research has pointed to cardiovascular and cognitive issues as well. Entering menopause can entail years of symptoms such as hot flashes, urinary incontinence, vaginal dryness, insomnia, and low libido. Putting all of that off, perhaps indefinitely, could extend the period in which women live healthfully, buoyed by their reproductive hormones.[Read: Women in menopause are getting short shrift]Extending the ovaries’ shelf life won’t necessarily reverse or even mitigate menopause’s unwanted effects, Stephanie Faubion, the director of Mayo Clinic’s Center for Women’s Health, told me. Plus, it may come with additional risks related to later-in-life pregnancies. It could also raise a woman’s chances of breast or uterine cancer, blood clots, and stroke, Jerilynn Prior, an endocrinologist at the University of British Columbia, told me. And putting off menopause may also mean more years of menstruation and contraception, a prospect that will likely give many women pause, says Nanette Santoro, an obstetrician-gynecologist and a reproductive scientist at the University of Colorado School of Medicine.But several researchers think some tweaking is worth a shot. Even if menopause once helped our species survive, Goldman said, “it’s hard to imagine” that’s still the case. Evolution may have saddled us with an odd misalignment in the lifespans of the ovaries and the other organs they live alongside. But it has also equipped us with the smarts to potentially break free of those limits.
theatlantic.com