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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.

The Politics of Fear Itself

The Atlantic

www.theatlantic.com › ideas › archive › 2024 › 05 › politics-fear-itself-trump-maga › 678311

A few months ago, I had an email exchange with a person who works in the right-wing-media world. He said that crime was “surging,” a claim that just happened to advance the Trumpian narrative that America during the Biden presidency is a dystopia.

I pointed out that the preliminary data showed a dramatic drop in violent crime last year. (Violent crime spiked in the final year of Donald Trump’s presidency, during the coronavirus pandemic, and has declined in each year of Joe Biden’s presidency.) During our back-and-forth, my interlocutor at first denied that crime had dropped. He sent me links showing that crime rates in Washington, D.C., were increasing, as though a national drop in crime couldn’t be accompanied by an increase in individual cities. He insisted the data I cited were false, implying they were the product of the liberal media. “Perception is reality,” he told me. “Nobody is buying the narrative that crime is getting better.”

Eventually, after I responded to each of his claims, he reluctantly conceded that crime, rather than surging, was dropping—but ascribed the source of the progress to Republican states. I corrected him on that assertion, too. (Crime has dropped in both red and blue states.) He finally admitted that, yes, crime was decreasing, and in blue states too, but said the drop was inevitable, the result of the pandemic’s end. So he blamed Biden when he thought violent crime was increasing and insisted Biden deserves no credit now that violent crime is decreasing.

[Rogé Karma: The great normalization]

I consider where we ended up a victory, but only a partial and temporary one. His fundamental storyline hasn’t changed. Virtually every day he insists that life in America under Biden is a hellscape and that his reelection would lead to its destruction.

Welcome to MAGA world.

I mention this exchange because it reveals something important about the MAGA mind. Trump and his supporters have a deep investment in promoting fear. At almost every Trump rally, the former president tries to frighten his supporters out of their wits. He did this in 2016 and 2020, and he’s doing it again this year.

“If he wins,” Trump said of Biden during a rally in Schnecksville, Pennsylvania, “our country is going to be destroyed.” Trump also said this of Biden: “He’s a demented tyrant.” After Trump’s victories on Super Tuesday, he told an audience of his supporters, “Our cities are choking to death. Our states are dying. And frankly, our country is dying.”

Other politicians have been fearmongers, but none has been as relentless and effective as Trump. He has an unparalleled ability to promote feelings of terror among his base, with the goal of translating that terror into votes.

But as I recently argued, Biden has been president for nearly three and a half years, and America has hardly entered a new Dark Age. In some important respects, in fact, the nation, based on empirical evidence, is doing better during the Biden years than it did during the Trump years. And evangelical and fundamentalist Christians, who comprise the most loyal and embittered parts of the Trump base, enjoy perhaps the greatest degree of religious liberty they ever have, and they are among the least persecuted religious communities in history. The number of abortions, of particular concern for evangelical Christians, declined steadily after 1990. At the end of Barack Obama’s presidency, during which there was a decrease of nearly 30 percent, the number of abortions reached its lowest level since Roe v. Wade was decided, in 1973. (During the Trump administration, the number of abortions increased by 8 percent.)

For many Trump supporters, then, fear is not so much the cause of their support for the former president as a justification for it. They use fear to rationalize their backing for Trump. They have a burning need to promote catastrophism, even if it requires cognitive distortion, spreading falsehoods, and peddling conspiracy theories.

But why? What’s driving their ongoing, deepening fealty to Trump?

Part of the explanation is partisan loyalty. Every party rallies around its presidential nominee, even if the nation is flourishing under the stewardship of an incumbent from the other party.

But that reasoning takes us only so far in this case. For one thing, it’s nearly inconceivable to imagine that if any other former president did what Trump has done, Republicans would maintain their devotion to him. Richard Nixon committed only a fraction of Trump’s misdeeds, and the GOP broke with him over the revelation of the “smoking gun” tapes. It was not his liberal critics, but the collapse of support within the Republican Party, that persuaded Nixon to resign.

Beyond that, Trump was not an incumbent this cycle. In 2020, he lost the presidency by 72 electoral votes and 7 million popular votes; Republicans lost control of the Senate, and Democrats maintained their majority in the House. In the past, when a one-term president was defeated and dragged his party down in the process, he was shown the exit. But despite Trump being a loser, Republicans remain enthralled by him. So something unusual is going on here.

Human beings have a natural tendency to organize around tribal affiliations. Some are drawn to what the Danish political scientist Michael Bang Petersen calls the “need for chaos,” and wish to “burn down” the entire political order in the hopes of gaining status in the process. (My colleague Derek Thompson wrote about Petersen and his work earlier this year.) And social scientists such as Jonathan Haidt point out that mutual outrage bonds people together. Sharing anger can be very pleasurable, and the internet makes doing this orders of magnitude easier.

For several decades now, the Republican base has been unusually susceptible to these predispositions. Grievances had been building, with Republicans feeling as though they were being dishonored and disrespected by elite culture. Those feelings were stoked by figures such as Newt Gingrich and Pat Buchanan, who decivilized politics and turned it into a blood sport. And then came Trump, the most skilled and successful demagogue in American history.

An extraordinary connection between Trump and his base was forged when he descended the golden escalator at Trump Tower in the summer of 2015 and employed his dehumanizing language. Almost every day since then, he has selected targets at which to channel his hate, which appears to be inexhaustible, and ramped up his rhetoric to the point that it now echoes lines from Mein Kampf. In the process, he has fueled the rage of his supporters.

Trump not only validated hate; he made it fashionable. One friend observed to me that Trump makes his supporters feel as if they are embattled warriors making a last stand against the demise of everything they cherish, which is a powerful source of personal meaning and social solidarity. They become heroes in their own mythological narratives.

But it doesn’t stop there. Trump has set himself up both as a Christ figure persecuted for the sake of his followers and as their avenging angel. At a speech last year at the Conservative Political Action Conference, Trump said, “In 2016, I declared, ‘I am your voice.’ Today, I add: I am your warrior. I am your justice. And for those who have been wronged and betrayed, I am your retribution. I am your retribution.”

“You’re not selling ‘Morning in America’ from Mar-a-Lago,” Steve Bannon, one of the MAGA movement’s architects, told The New York Times’ Charles Homans. “You need a different tempo. He needed to reiterate to his followers, ‘This is [expletive] revenge.’”

Malice, enmity, resentments: These are the emotions driving many Trump supporters. They’re why they not only accept but delight in the savagery and brutishness of Trump’s politics. They’re why you hear chants of “Fuck Joe Biden” at Trump rallies. His base constantly searches for new targets, new reasons to be indignant. It activates the pleasure center of their brain. It’s a compulsion loop.

Which brings me back to the exchange I described at the beginning of this essay. My interlocutor was clearly rooting against good news; though he would deny it, the implication of his response was that he wanted crime to get worse. Not because he was rooting for innocent people to die, though that would be the effect. What appeared to animate him—as it has for the entire Biden presidency—is the awareness that good news for America means bad news for MAGA world. Worse yet, good news would be celebrated by people—Biden, Democrats, Never Trumpers—he has grown to hate. But hate is an unattractive emotion to celebrate; it benefits from a polite veneer.

[Read: You should go to a Trump rally]

In this case, the finishing coat is fear, the insistence that if Biden is president, all that Trump’s supporters hold dear will die. This isn’t true, but it doesn’t matter to them that it’s not true. The veneer also makes it easier for Trump supporters—evangelical Christians, “constitutional conservatives,” champions of law and order, and “family values” voters among them—to justify their support for a man who embodies almost everything they once loathed.

Even as Donald Trump’s politics has become more savage, his threats aimed at opponents more ominous, and his humiliation of others more frequent—he has become ever more revered by his supporters.

I imagine that even some of the Republican Party’s harshest liberal critics could not have anticipated a decade and a half ago that the GOP would be led by a man who referred to a violent mob that stormed the Capitol to stop the peaceful transfer of power as “political prisoners,” “hostages,” and “patriots.” It’s been an astonishing moral inversion, a sickening descent. And it’s not done.