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The Conjoined Twins Who Refused to Be ‘Fixed’

The Atlantic

www.theatlantic.com › health › archive › 2024 › 05 › schappell-twins-conjoined-disabled-transgender › 678316

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.

When Conservative Parents Revolt

The Atlantic

www.theatlantic.com › family › archive › 2024 › 05 › conservative-parent-activism-public-school › 678309

America’s public schools, since their creation, have repeatedly become a locus for our nation’s most divisive fights over politics and civil rights, whether the subject be evolution, segregation, sex ed, or school prayer. After all, it is in its classrooms—in social-studies curricula and civics lessons and mandatory-reading lists—that the country wrestles with how to tell its story to new generations, how to teach kids what’s right and wrong, true and false. And the decisions that society makes about what children ought to learn, or ought not to, have the power to shape culture and the future of democracy.

Thus today we see fights over how to discuss racism in schools, with progressives championing lessons that connect the stain of slavery to modern inequities, conservatives demanding instead that children be taught “not to see color,” and plenty of debate somewhere in between. We see fights over whether first-graders should be allowed to check out picture books featuring LGBTQ characters, whether teens should be made to read literature with graphic depictions of sex, whether the Ten Commandments should be posted inside classrooms. The recent wave of activism targeting schools has sometimes seemed unprecedented in its ferocity and scale. But of course, these types of debates are not new. They fit into a long tradition of reactionary movements seeking to shape what children in America learn.  

This article was adapted from Mike Hixenbaugh’s new book, They Came for the Schools: One Town’s Fight Over Race and Identity, and the New War for America’s Classrooms.

Early in the 20th century, Christian fundamentalists waged a crusade to stop the teaching of human evolution in public schools, culminating most famously with 1925’s Scopes “monkey trial,” in which a high-school teacher in Tennessee was charged with violating a new state law banning evolution lessons from classrooms. With the United States on the precipice of entering World War II in the late 1930s and early ’40s, groups such as the Daughters of the American Revolution and the American Legion waged a successful nationwide campaign against popular social-studies textbooks written by the progressive educator Harold Rugg; they argued that the books—which raised questions about the unequal distribution of wealth in the U.S. and advocated for civil rights for African Americans—were “subversive.” Attempts to force schools to integrate in the 1950s, ’60s, and ’70s were met with riots and racist protests.

While researching my book on the latest political wars over public education, I came across a 1981 New York Times article that sounded as if it might have been printed this year. It described a coalition of suburban residents who, “armed with sophisticated lobbying techniques,” were fighting to “remove books from libraries” and replace history syllabi with “texts that emphasize the positive side of America’s past.” The article documented efforts by parents’ groups across the country to “cleanse their local schools of materials and teaching methods they consider antifamily, anti-American and anti-God.” Here was a tale of conservative activists waging a national assault on school lessons more than four decades ago, though that earlier generation applied a different label to the threat it perceived than activists do now: secular humanism.

Rooted in 17th- and 18th-century Enlightenment thinking, secular humanism, as it was originally understood, refers to a belief system that rejects religion as the basis for morality and emphasizes the need to test dogma with science, to pursue justice by opposing discrimination, and to focus on improving conditions here on Earth rather than looking to the afterlife. But in the 1970s and ’80s, it was redefined by white Christian conservatives—much like the term critical race theory, decades later—as a catchall to describe any lesson or book they found objectionable. If a text mentioned the struggle for women’s rights, it was secular humanist; if it mentioned the racism of the Jim Crow era, it was secular humanist.

[Read: The banned books you haven’t heard about]

Also much as in today’s fights, the battles over secular humanism, which occurred in the years immediately following the civil-rights movement, were a response to evolving social norms around gender, race, and sexuality. And just as the protests for racial justice following the police murder of George Floyd in 2020 incited school-board conflicts in communities with rapidly changing demographics, many of the battles a generation ago emanated from predominantly white but diversifying suburbs, where angry parents formed groups with such names as Young Parents Alert and Guardians of Education. Portraying teachers, textbook writers, and school bureaucrats as liberal foot soldiers in a shadowy scheme to indoctrinate their children, these citizen activists described their cause as one of good versus evil, a framing that stoked passions—and sometimes violence.

The simmering right-wing movement against secular humanism exploded into national view in the spring of 1974, when white fundamentalists launched a political attack on the public school system in Kanawha County, West Virginia. The district had introduced new multicultural textbooks as required by a recent state mandate. Months of protests were led by Alice Moore, a white school-board member and preacher’s wife who argued—while explicitly invoking the dangers of secular humanism—that new language-arts textbooks would teach students “ghetto dialect” instead of “standard American speech.” Picketers carried homemade signs, including one that read I have a “Bible,” I don’t need those dirty books. Angry parents were soon joined by members of the Ku Klux Klan. An elementary school’s entrance was defaced with a swastika. Arsonists attacked schools with firebombs and Molotov cocktails, vandals cut the fuel lines of school buses to keep them from running, and the county board-of-education building was blasted with 15 sticks of dynamite.

The unrest largely died down after six months, but the school board made a concession. All future textbooks in Kanawha County would have to “encourage loyalty to the United States” and “not defame our nation’s founders”—provisions strikingly like those sought by the GOP today. In states such as Texas and Oklahoma, legislators have passed laws requiring that students be taught a “patriotic” version of America’s past and banning texts that depict slavery as central to the nation’s founding.

There are also parallels in the financing of these movements, with support then and now drawn from a large network of conservative think tanks and activist groups. The campaign against secular humanism was backed by national organizations including the Heritage Foundation, Jerry Falwell’s Moral Majority, Pat Robertson’s National Legal Foundation, and the antigay, anti-feminist crusader Phyllis Schlafly’s Eagle Forum. Some of those same organizations remain involved today, joined by dozens of emergent activist groups, such as Moms for Liberty, No Left Turn in Education, and the 1776 Project PAC.

Some aspects of the right’s new playbook appear to have been copied from history—including its campaign to leverage school-board conflicts to push for a conservative reinterpretation of foundational rights. With help from conservative law firms, parents filed lawsuits in the 1970s and ’80s claiming that secular humanism was itself a religion, and as such should be barred from schools or balanced with Christian perspectives. Others in the movement simultaneously sought to overturn the principle of Church-state separation that was the basis for that argument. Insisting that America’s founding was grounded in biblical principles, activists demanded that educators present Christianity in a favorable light, that children be taught to respect the United States and its military, and that men and women be depicted in “traditional” gender roles in classroom reading assignments.

[Read: The librarians are not okay]

Although many of these demands were denied by local and state education boards, Christian conservative groups scored major victories throughout the 1980s—largely through targeted lawsuits and local pressure campaigns—before the movement’s power and momentum began to wane, in the ’90s. The biggest win from that era may have come in 1984, when Congress passed a law that included an amendment written by Senator Orrin Hatch of Utah, prohibiting the use of federal funds for the teaching of secular humanism. Hatch failed to clearly define the concept, however, leaving confused educators to guess at which ideas were or were not allowed in classrooms. As one of Hatch’s aides would later concede, the senator’s amendment was meant mostly as a “symbolic thing.”

A similarly vague warning is being broadcast to educators across the country today, leading many to change the way they teach. A recent survey by Rand found that two-thirds of teachers nationally reported choosing to limit instruction about political and social issues, including racism and LGBTQ topics. Even in states and school districts where Republicans haven’t adopted laws or policies restricting lessons on race, gender, and sexuality, educators say their fear of political attacks has caused them to avoid subjects and lessons that might stir backlash.

Now, in many classrooms, dark chapters of America’s history are being softened or skipped. Some students are being taught a distorted narrative about our nation’s past and present, and books challenging that depiction are being pulled from shelves. All of this is helping shape what a new generation of Americans believes about our country—exactly the effect that anti-secularism activists fought for decades ago.

As it turns out, secular humanism itself may be experiencing something of a rebound as a boogeyman. On a recent reporting trip to Virginia Beach, where I was covering a live taping of a pro-Trump, Christian-nationalist television program, I listened to a young political strategist named Luke Ball bemoan the failure by his parents’ generation to teach children what is good and right. “We replaced Christianity with secular humanism in our classrooms,” Ball said. He then proceeded to blame the philosophy’s insidious influence for much of what the Christian right believes is wrong with the country today—pro-Palestine protests on college campuses, LGBTQ pride flags fluttering outside the White House, drag queens reading to children.

But there was still time to turn things around, Ball said. Conservatives just needed to look to the past and learn from their history.