Galileo’s Middle Finger

Description

“Smart, delightful . . . a splendidly entertaining education in ethics, activism, and science.” —The New York Times Book Review (Editor’s Choice)
 
An impassioned defense of intellectual freedom and a clarion call to intellectual responsibility, Galileo’s Middle Finger is one American’s eye-opening story of life in the trenches of scientific controversy. For two decades, historian Alice Dreger has led a life of extraordinary engagement, combining activist service to victims of unethical medical research with defense of scientists whose work has outraged identity politics activists. With spirit and wit, Dreger offers in Galileo’s Middle Finger an unforgettable vision of the importance of rigorous truth seeking in today’s America, where both the free press and free scholarly inquiry struggle under dire economic and political threats.
 
This illuminating chronicle begins with Dreger’s own research into the treatment of people born intersex (once called hermaphrodites). Realization of the shocking surgical and ethical abuses conducted in the name of “normalizing” intersex children’s gender identities moved Dreger to become an internationally recognized patient rights activist. But even as the intersex rights movement succeeded, Dreger began to realize how some fellow progressive activists were employing lies and personal attacks to silence scientists whose data revealed uncomfortable truths about humans. In researching one such case, Dreger suddenly became the target of just these kinds of attacks.
 
Troubled, she decided to try to understand more—to travel the country to ferret out the truth behind various controversies, to obtain a global view of the nature and costs of these battles. Galileo’s Middle Finger describes Dreger’s long and harrowing journeys between the two camps for which she felt equal empathy: social justice activists determined to win and researchers determined to put hard truths before comfort. Ultimately what emerges is a lesson about the intertwining of justice and of truth—and a lesson of the importance of responsible scholars and journalists to our fragile democracy.
 
Praise for Galileo’s Middle Finger:
“An engrossing volume that is sure to undo any lingering notions that academic debate is the province of empiricists who pledge allegiance to the truth, the whole truth, and nothing but the truth . . . Dreger’s clear and well-paced prose makes for compelling . . . reading.” —The Chicago Tribune

New York Times Book Review
“[A] smart, delightful book. Galileo’s Middle Finger is many things: a rant, a manifesto, a treasury of evocative new terms (sissyphobia, autogynephyllia, phall-o-meter) and an account of the author’s transformation “from an activist going after establishment scientists into an aide-de-camp to scientists who found themselves the target of activists like me”–and back again… I suspect most readers will find that [Dreger’s] witnessing of these wild skirmishes provides a splendidly entertaining education in ethics, activism and science.”

Chicago Tribune
“Dreger tells the story in her new book on scientific controversies, Galileo’s Middle Finger: Heretics, Activists, and the Search for Justice in Science, an engrossing volume that is sure to undo any lingering notions that academic debate is the province of empiricists who pledge allegiance to the truth, the whole truth, and nothing but the truth… Dreger’s clear and well-paced prose makes for compelling—and depressing—reading. If you believe what you were taught about scientific method, about old ideas giving way under the sway of new evidence, you’re an idealist and you probably know that already. The truth is sometimes closer to the much-repeated notion that a new idea can’t truly take hold until the people who held the old idea die.”

Salon.com: 
“Galileo’s Middle Finger offers a trench-level account of several hot scientific controversies from the past 30 years, told with the page-turning verve of an exposé.”

Forbes.com: 
“Lying and deceit have been around for a long time—forever, probably—but what makes Dreger’s book so compelling is where she dug them up: among health activists, academics and ethicists who we normally associate with honesty and integrity…. Like her hero Galileo, Dreger believes that the ‘real’ truth does exist and we are all for the worse when we don’t seek it out. It is an argument that deserves more of our attention.”

Nature: 
“Dreger ends this powerful book by call­ing for her fellow academics to counter the ‘stunningly lazy attitude toward pre­cision and accuracy in many branches of academia.’ In her view, chasing grants and churning out papers now take the place of quality and truth. It is a situation exacerbated by a media that can struggle when covering scientific controversies, and by strong pres­sures from activists with a stake in what the evidence might say. She argues, ‘If you must criticize scholars whose work challenges yours, do so on the evidence, not by poisoning the land on which we all live.’ There is a lot of poison in science these days. Dreger is right to demand better.”

Library Journal (starred review): 
“Accomplishing deft journalistic storytelling, [Dreger] pursues relentlessly her thesis that neither truth nor justice can exist without the other and that empirical research is essential to democratic society. She challenges readers to recognize that the loudest voice is not necessarily right, the predominant view is not always correct, and the importance of fact-checking and defending true scholarship. A crusader in the mold of muckrakers from a century ago, Dreger doesn’t try to hide her politics or her agenda. Instead she advocates for change intelligently and passionately.” 

Kirkus (starred review): 
“Let us be grateful that there are writers like Dreger who have the wits and the guts to fight for truth.” 

Dan Savage, founder of “It Gets Better” Project; author of American Savage: 
“If there ever there were a book that showed how democracy requires smart activism and solid data—and how that kind of work can be defeated by moneyed interests, conservative agendas, inept governments, and duplicitous “activists”—this is it. Galileo’s Middle Finger reads like a thriller. The cliché applies: I literally couldn’t put it down. Alice Dreger leaves you wondering what’s going to happen to America if our universities continue to turn into corporate brands afraid of daring research and unpopular ideas about who we are.”

Edward O. Wilson, University Research Professor, Emeritus, Harvard University: 
“In this important work, Dreger reveals the shocking extent to which some disciplines have been infested by mountebanks, poseurs, and even worse, political activists who put ideology ahead of science.”

Elizabeth Loftus, Distinguished Professor, University of California, Irvine: 
“Galileo’s Middle Finger is a brilliant exposé of people that want to kill scientific messengers who challenge cherished beliefs. Dreger’s stunning research into the conflicts between activists and scholars, and her revelations about the consequences for their lives (including hers), is deeply profound and downright captivating. I couldn’t put this book down!”

Steven Pinker, Johnstone Professor of Psychology, Harvard University; author of The Blank Slate and How the Mind Works:
“In activism as in war, truth is the first casualty. Alice Dreger, herself a truthful activist, exposes some of shameful campaigns of defamation and harassment that have been directed against scientists whose ideas have offended the sensibilities of politicized interest groups. But this book is more than an exposé. Though Dreger is passionate about ideas and principle, she writes with a light and witty touch, and she is a gifted explainer and storyteller.”

Jared Diamond, author of Guns, Germs, and Steel and The World until Yesterday: 
“Alice Dreger would win a prize for this year’s most gripping novel, except for one thing: her stories are true, and this isn’t a novel.  Instead, it’s an exciting account of complicated good guys and bad guys, and the pursuit of justice.”

Human Nature
“Galileo’s Middle Finger is not, ultimately, about scientists versus activists, but about the necessity of anyone interested in social justice primarily being concerned with truth. For a ‘sustainable justice,’ Dreger argues, ‘is impossible if we don’t know what’s true about the world.’ Liberal science, with its insistence on evidence and explicit rejection of arguments from personal authority, is the best system yet designed for distinguishing truth from falsehood. And for this reason, Dreger reminds us, ‘Evidence is an ethical issue.’”

Alice Dreger is a professor of clinical medical humanities and bioethics at Northwestern University’s Feinberg School of Medicine and the author of Hermaphrodites and the Medical Invention of Sex and One of Us: Conjoined Twins and the Future of Normal. Her work has been discussed in the New York Times, the New Yorker, and Science and on CNN, and her op-eds have appeared in the New York Times, the Atlantic, the Washington Post, and the Wall Street Journal. She has appeared as a guest expert on Oprah, Savage Love, Good Morning America, and NPR. Her TED talk, “Is Anatomy Destiny?,” has been viewed more than 850,000 times.

INTRODUCTION

THE TALISMAN

SOON ENOUGH, I will get to the death threats, the sex charges, the alleged genocides, the epidemics, the alien abductees, the antilesbian drug, the unethical ethicists, the fight with Martina Navratilova, and of course, Galileo’s middle finger. But first I have to tell you a little bit about how I got into this mess. And explain why I think we now have a very dangerous situation on our hands.

As an academic historian who typically hangs out with her own political kind, I’m aware of the stereotype many liberals have about conservative Catholics. The former believe the latter don’t think—that conservative religious people don’t care about facts and rigorous inquiry. But my conservative Catholic parents were thinkers. Twice as often as my parents told their four children to go wash, they told us to go look something up. At our suburban tract house on Long Island in the 1970s, our parents shelved the Encyclopædia Britannica right next to the dinner table so we could easily reach for a volume to settle the frequent debates. The rotating stack of periodicals in our kitchen included not only religiously oriented newsletters, but also the New York Times and National Geographic. Our parents took us to science museums, woke us up for lunar eclipses, and pushed us to question our textbooks and even our teachers when they sounded wrong. Although our mother never mentioned that she had earned a degree in philosophy from Hunter College, she read to us aloud from Plato and Shakespeare, analyzing the texts as she read. Meanwhile, our father, a draftsman for one of the big Long Island defense contractors, loved learning in spite of having had only a high school education. We joked that he would someday be crushed under his books, most of them military histories of Poland, the homeland of both sides of our family. He got us microscopes and telescopes and talked seriously about the potential for alien life-forms. I vividly recall that, when one day we summoned him urgently to come see a giant UFO that had appeared in the sky, he was genuinely disappointed to discover he had bothered to grab his camera for the Goodyear blimp.

But besides being intellectuals and knowledge seekers, my parents were also industrial-strength Roman Catholics. They sought out Latin masses and avoided meat on Fridays long after Vatican II declared all that fuss unnecessary. They sent us to public school not only because the local public schools offered the best education around, but also because the local Catholic school struck them as dangerously liberal in its religious orientation. (Better to be among Protestants and Jews than roomfuls of squishy Catholics.) Their religious devotion manifested itself largely in pro-life activism. Even while their own children were still young and underfoot, my parents collected baby things to give to poor mothers, took in a young pregnant woman who had been thrown out by her parents, and became foster parents to a mixed-race baby of a single mother, ultimately adopting that child. As we were growing up, the basement of our house slowly filled with homemade placards we would carry when marching outside abortion clinics.

Although they were highly obedient to authority in their religious lives, in their political lives, my parents were rabble-rousers. My father ran for Congress on the Right-to-Life Party line, while my mother helped lead the local chapter of Feminists for Life. (In the 1970s, bra-burning pro-lifers were a real thing.) My mother especially embraced her American rights to speak, to assemble, to vote, and to protest, because she knew her life might well have turned out differently. Born in 1935 in Poland, she had somehow survived the Second World War with her extended family in their tiny farming village in an area subjected to repeated aerial bombings and ground-war skirmishes. Not long after the war ended, at the age of eleven, she had been suddenly transported with her brother and mother to America, where the three of them were reunited with her father. (Her father had had dual citizenship and had fought with the Americans.) On these shores, she found a land where you could, without fear, say and think what you wanted, worship and vote as you wanted, and openly object to what you found stupid or offensive. She let us know, as we were growing up, that she considered American democracy a true wonder, a tool to be used at every chance. The Bill of Rights seemed to her almost as sacred as the Bible. This view was implicitly and explicitly reinforced by the rare relatives who made it out of Soviet-controlled Poland and came to lodge with us.

My parents never seemed to feel a tension between these heavy strands that comprised their lives—the Old World and the New, the religious and the intellectual, the obedient and the activist. I suppose that to them it all seemed obviously interrelated. They had no trouble sending me to confession one day and renewing my subscription to Natural History magazine the next. But as I grew up, I felt the tension one surely must feel when being simultaneously taught the importance of a specific dogma and the importance of freedom from dogma.

I knew that some people abandoned their parents’ religion as a way of asserting their independence. But for me, losing my religion wasn’t about rebellion against my parents; indeed, I felt quite forlorn at the idea of disappointing my family by admitting my atheism. Still, my parents’ religious faith seemed to me incommensurate with our deeply felt faith in America—a faith in freedom of inquiry, in freedom of thought, in the will and right of the people to collectively discover truth and to make their own rules accordingly. And I loved America much more than I loved the Vatican, that place where celibate old men had the right to tell intelligent women what we should think and do. By the time I was in my late teens, while my sister was on her way to becoming a nun, I couldn’t help but notice that the place I felt the hope of salvation wasn’t church. It was the American Museum of Natural History, that great cathedral of evolution. As often as I could, I would take the train into New York City and lie under the giant blue whale in the great darkened hall of ocean life. Every time I lay there—waiting for the delicious moment when the whale started to move, from optical illusion—science struck me as the obvious and perhaps only way to remain perpetually free from blinding, oppressive dogma.

I guess, then, it is not too surprising that I ultimately decided to pursue a PhD in the history and philosophy of science, at Indiana University. Exploring the very life and guts of science by studying the history and the philosophy of it—this seemed to me the way to make sure that the most antidogmatic way of life we had available to us, the scientific way of life, would remain healthy and vigorous. But by the time I moved to Bloomington for graduate school, in 1990, not everyone in the academic fields of science studies (the history, philosophy, and sociology of science) felt the same devotion. At that point, Marxist and feminist science-studies scholars had for almost two decades been producing a large body of work deeply critical of various scientific claims and practices. They had shown how various scientists had, in word and deed, oppressed women, people of color, and poor folks, typically by making problematic “scientific” claims about them. Harvard biologist Ruth Hubbard, for example, had taken apart pseudoscientific claims that biology made women “naturally” less capable of doing science than men. Historians like Londa Schiebinger and Cynthia Eagle Russett had documented how, over many centuries, patriarchies had deployed the rhetoric of science to represent women as inherently inferior to men. Meanwhile, Hubbard’s Harvard colleague Stephen Jay Gould had scrutinized “scientific” studies purporting to show important racial differences in skull size and IQ and had shown them to be hopelessly riddled with racist bias.

Make no mistake: As a liberal feminist, I was extremely sympathetic to feminist and Marxist science studies. Indeed, the work of scholars like Gould—whose columns in Natural History I had devoured as a teenager—struck me as constituting perhaps the most important work of social justice of our time, because it challenged racist and sexist claims about human nature. These leftist criticisms were part of what drove me to graduate school. But to me at least, the finding by Gould and others that scientists often suffered from bias didn’t mean science itself was rotten. The very fact that scholars could see and show problems of racist and sexist bias in science stood to me as proof that, together, evidence-driven scholars could advance knowledge and ultimately get past the individual human mind’s tendency to follow familiar scripts. If some of the products of science disappointed me, the process most assuredly did not. Indeed, in graduate school, I gravitated toward historical work specifically because I loved the relatively scientific process in history of seeking, organizing, and analyzing evidence—of letting the data guide you toward new and unexpected learning, as much as humanly possible.

 • • • 

IN GRADUATE SCHOOL, I ended up cutting my scholarly teeth on the history of the biomedical treatment of people born with sex anomalies—the people who used to be called hermaphrodites. For many years, people would assume I had a personal stake in this identity issue—that I or someone I loved had been born hermaphroditic—but in fact this topic was simply suggested to me by my dissertation director, who saw it as a great way to examine “scientific” conceptions of gender, something that fascinated me as a feminist. To be honest, in looking into the history of hermaphroditism, I decided to focus on the late nineteenth and early twentieth centuries because I figured I’d find easy pickings there. I already knew that most doctors of that time were politically conservative men, inclined to believe that the unequal social treatment of women arose from—nay, was required by—the allegedly natural two-sex divide. I knew there would have been a lot at stake for one of these sexist doctors when a patient appeared on inspection to be a hermaphrodite. Some of these patients had immediately apparent mixes of male and female traits—a notable phallus and a vaginal opening or feminine breasts along with a full beard. Others appeared to have one sex externally but the opposite internally. All unwittingly challenged the idea that there were only two real sexes—that there was a clear, natural divide between men and women.

Just as I was finishing my PhD, in 1995, I published my first scholarly paper, in the journal Victorian Studies. This article mapped out a hitherto uncharted history: what Victorian British doctors had done when faced with living proof that humans don’t come in only two sexes.Though my report contained some grainy 1890s photographs of ambiguous genitalia, it was still pretty academic, showing no real hint of the odd path the paper’s publication would lead me down. My finding was simply that Victorian doctors, befuddled by cases of “doubtful sex,” had deployed pragmatic combinations of clever rhetorical strategies, new scientific tools like microscopes, and the occasional surgical scalpel to try to make “true hermaphroditism” virtually disappear, all to protect long-standing social distinctions between men and women. But dry as that article may have been, it ended up pushing me into two unfamiliar and intense worlds: contemporary sex politics and contemporary medical activism. That’s because, thanks to the Internet, by the time I came to this topic, in the mid-1990s, something was going on that the Victorian doctors would never have imagined: People who had been born with various sex anomalies had started to find each other, and they had started to organize as an identity rights movement.

Labeling themselves intersex, many gathered under the leadership of Bo Laurent, the founder of the Intersex Society of North America, and after reading my Victorian Studies article, some of these intersex activists, including Bo, contacted me. A couple wrote me simply to complain that they found some of my language offensive, apparently not realizing I was relaying Victorian rhetoric in my article. By contrast, Bo got my work. And she asked for my help in changing the way children born intersex were treated in modern medicine.

Now, as a straight, sex-typical female earning degrees in history and philosophy, I had started working in this field not only rather uneducated about human sex anatomy, but also rather uneducated about the politics of contemporary medicine. Still, it didn’t take long for me to see the ways that our present-day medical system was indeed as broken as Bo and her compatriots were describing. Indeed, the system being employed at the children’s hospital down the street from my grad-school apartment made the Victorian approach look relatively benign. The modern system featured not only highly aggressive cosmetic genital surgeries in infancy for children born with “socially inappropriate” genital variations like big clitorises, but also the withholding of diagnoses from patients and parents out of fear that they couldn’t handle the truth. It treated boys born with small penises as hopeless cases who “had” to be castrated and sex-changed into girls, and it assumed that the ultimate ability of girls to reproduce as mothers should take precedence over all else, including the ability to someday experience orgasm.

I hastened to tell Bo, “I’m a historian; I study dead people.” However, once I understood what was really going on at pediatric hospitals all over the nation—once I understood that Bo’s clitoris had been amputated in the name of sex “normalcy” and that this practice was still going on—I felt I had to assist in her efforts. I had been raised to be an activist and to be someone who helps people in desperate circumstances, and I was stunned and outraged by what was going on. I threw myself into the struggle and spent the decade after grad school living two lives—as a professor researching and writing academic histories of the medical establishment’s treatment of intersex and also as a patient advocate and a leading activist for the rights of sexual minorities. By day, I was your typical history professor—researching, teaching, and dealing with committee assignments. By night, I was campaigning to stop unnecessary and harmful genital surgeries, ill-advised sex changes on babies, and the well-meaning lies told to affected families. I held fund-raisers, I drafted press releases, I developed policies, I wrote and ghost-wrote propaganda, and I stuffed a lot of envelopes. I also testified to governmental committees, met with groups of activists and doctors, got media training, and appeared as a talking head on one news program after another.

I found the advocacy work so meaningful and so exhausting that when it was time for me to go up for promotion to full professorship, I quit my day job instead. About ten years into my life as a PhD, I gave up tenure and the ability to grow my retirement account in part so that I would have more time and energy for activism. I also did it because by then I’d had a kid and couldn’t continue to devote myself to two jobs; until I turned in my resignation letter, on top of my job as a professor, I was also managing our staff of five at the Intersex Society. At that point, I did let an old academic friend talk me into picking up a part-time, untenured professorship at Northwestern University’s medical school in Chicago. The job there was small enough to leave me free to do whatever I felt needed my attention but big enough in name to open some doors.

 • • • 

IT WAS SHORTLY AFTER this time that I took on a new scholarly project, one that without much warning forced me to question my politics and my political loyalties, if not also my decision to give up tenure. This was a project that suddenly changed me from an activist going after establishment scientists into an aide-de-camp to scientists who found themselves the target of activists like me. Indeed, this project soon put me in a position I would never have imagined for myself: vilified by gender activists at the National Women’s Studies Association meeting and then celebrated at the Human Behavior and Evolution Society by the enemies of my childhood hero, Stephen Jay Gould.

The scholarly project, which I took on early in 2006, involved investigating the history of one particular controversy over transgender. Just to be clear, although both transgender and intersex people are historically oppressed sexual minorities, transgender is different from intersex. Whereas intersex refers to the condition of being born with a mix of female and male anatomical features, being transgender means feeling that the gender label assigned to you at birth was the wrong one. Think Christine Jorgensen or Chaz Bono, people who were born clearly one sex but who find they need to change it. To oversimplify it a bit, we could say that intersex is primarily about how you are born in terms of your sex organs, and transgender is primarily about how you feel in terms of your gender identity.

In 2003, three years before I came to the story, a group of transgender activists had kicked up a storm over a book by a Northwestern sex researcher, J. Michael Bailey, because in that book, Bailey had pushed a theory these activists didn’t like: Bailey had suggested that, in cases of men who become women, transgender isn’t just about gender identity, but also about sexual orientation—about eroticism. This, I already knew, was a no-no among certain groups of transgender activists who insisted that virtually all transgender people are born with the brain of one sex and the body of the other—that transgender identity is just about core inborn gender, not about erotic feelings. To opine about sexual orientation in conjunction with transgender the way Bailey did was to skip into a minefield created by four decades of intense social and medical battles over the nature of transgender identity.

Still, I thought I knew from my background in science studies and a decade of intersex work how to navigate an identity politics minefield, so I wasn’t that worried when in 2006 I set out to investigate the history of what had really happened with Bailey and his critics. My investigation ballooned into a year of intensive research and a fifty-thousand-word peer-reviewed scholarly account of the controversy. And the results shocked me. Letting the data lead me, I uncovered a story that upended the simple narrative of power and oppression to which we leftist science studies scholars had become accustomed.

I found that, in the Bailey case, a small group had tried to bury a politically challenging scientific theory by killing the messenger. In the process of doing so, these critics, rather than restrict themselves to the argument over the ideas, had charged Bailey with a whole host of serious crimes, including abusing the rights of subjects, having sex with a transsexual research subject, and making up data. The individuals making these charges—a trio of powerful transgender women, two of them situated in the safe house of liberal academia—had nearly ruined Bailey’s reputation and his life. To do so, they had used some of the tactics we had used in the intersex rights movement: blanketing the Web to make sure they set the terms of debate, reaching out to politically sympathetic reporters to get the story into the press, doling out fresh information and new characters at a steady pace to keep the story in the media and to keep the pressure on, and rhetorically tapping into parallel left-leaning stories to make casual bystanders “get it” and care. Tracking their chosen techniques was occasionally like reading a how-to activist manual that I could have written, but there was one crucial difference: What they claimed about Bailey simply wasn’t true.

You can probably guess what happens when you expose the unseemly deeds of people who fight dirty, particularly when you publish a meticulously documented journal article detailing exactly what they did, and especially when the New York Times covers what you found. Certainly I should have known what was coming—after all, I had literally written what amounted to a book on what this small group of activists had done to Bailey. But it was still pretty uncomfortable when I became the new target of their precise and unrelenting attacks. The online story soon morphed into “Alice Dreger versus the rights of sexual minorities,” and no matter how hard I tried to point people back to documentation of the truth, facts just didn’t seem to matter.

Troubled and confused by this ordeal, in 2008 I purposefully set out on a journey—or rather a series of journeys—that ended up lasting six years. During this time, I moved back and forth between camps of activists and camps of scientists, to try to understand what happens—and to figure out what should happen—when activists and scholars find themselves in conflict over critical matters of human identity. This book is the result.

I understand that some people on an exploration like this might have tried to just clinically observe it all and to write an “objective” third-person account of scientific controversies over human identity in the Internet age. But already by the time I set out, I knew way too much about individual human bias to kid myself into thinking I could work simply as a stateless reporter above all the frays. I also felt too strongly the need to honor both good science and good activism to remain uninvolved when I saw crazy stuff happening on one side or the other. I believed—and still believe—too much in the importance of facts to sit idly by when I saw someone, be it a scientist or an activist, actively misrepresenting what is really known. As a consequence, as I traveled through scientist-activist wars over human identity—first in psychology, then anthropology, then prenatal pharmacology—rather than being merely embedded, I kept getting uncomfortably embroiled.

In spite of how difficult some of it has been, this journey of discovery proves something really important: Science and social justice require each other to be healthy, and both are critically important to human freedom. Without a just system, you cannot be free to do science, including science designed to better understand human identity; without science, and especially scientific understandings of human behaviors, you cannot know how to create a sustainably just system. As a consequence of this trip, I have come to understand that the pursuit of evidence is probably the most pressing moral imperative of our time. All of our work as scholars, activists, and citizens of democracy depends on it. Yet it seems that, especially where questions of human identity are concerned, we’ve built up a system in which scientists and social justice advocates are fighting in ways that poison the soil on which both depend. It’s high time we think about this mess we’ve created, about what we’re doing to each other and to democracy itself.

 • • • 

VERY OFTEN DURING this long, strange trip, while stuck in some airport on a layover, I found myself meditating on the image of Galileo’s middle finger. I accidentally came upon that mummified digit two decades ago on a trip in graduate school, just at the start of my scholarly work on the history of hermaphrodites. In May 1993, I had gone to Italy to accompany my mother, at her request, on a tour of Roman Catholic religious sites. As we had planned, when the tour ended, my mother flew back to America while I set off to continue around Europe by train to supplement my studies. For my first stop, I took the train from Rome to Florence to visit the history of science museum attached to the Uffizi art galleries. I had planned this short stop in Florence because of the opportunity to see the museum’s collection of eighteenth-century wax obstetrical models, life-size teaching instruments I had already read much about. But I was also very excited at the prospect of seeing a set of artifacts that are to a historian of science what Jesus’s cross would be to a Christian: Galileo’s telescopes.

When Galileo Galilei was born, in 1564, the world had just started changing in the direction that would ultimately lead to modern science, modern technology, and democracy. The old way—accepting authorities without much question—had just started to develop serious cracks. Not long before Galileo’s birth, European anatomists like Andreas Vesalius had begun to dissect human bodies and to show that the innards didn’t always match what the ancient authorities like Galen described. A Polish scholar named Nicolaus Copernicus had crunched the astronomical numbers and in 1543 suggested a model contrary to the ancient astronomer Ptolemy’s, a new model wherein the Sun, not the Earth, formed the center of our world.

But Galileo went much further than these men before him. Philosophically paving the way for the world as we now know it, Galileo actively argued for a bold new way of knowing, openly insisting that what mattered was not what the authorities—ancient or otherwise—said was true but what anyone with the right tools could show was true. As no one before him had, he made the case for modern science—for finding truth together through the quest for facts.

Galileo’s radical new way of thinking (along with his sense of humor) finds perfect display in one particular argument he had with a colleague over a vital and timeless question from the physical sciences: whether you could cook a bird’s egg by whirling it around your head in a sling. This hypothetical problem represented a larger physics question about whether flying objects heat up or cool down, but Galileo turned it into the even bigger question: How do we know if something is true?

Galileo’s contemporary debate partner on this topic was a Jesuit scientist named Orazio Grassi. Like most people of his time, Grassi usually accepted the word of the ancient authorities, and because ancient authorities reported that the Babylonians had managed to cook eggs by twirling them about in a sling, Grassi figured it must be true. But Galileo mocked this silly claim and in so doing explained how one could personally test ideas about cause and effect by controlling for variables, a brilliant and remarkably modern idea. Weighing in on the problem, Galileo wrote:

If we do not achieve an effect [like cooking an egg by whirling it] which others formerly achieved, it must be that in our operations we lack something which was the cause of this effect succeeding [for our predecessors], and if we lack but one single thing, then this alone can be the cause. Now we do not lack eggs, or slings, or sturdy fellows to whirl them; and still they do not cook, but rather they cool down faster if hot. And since nothing is lacking to us except being Babylonians, then being Babylonians [must be] the cause of the eggs hardening.

Of course what Galileo really meant was not that Babylonians had magical culinary skills, but this: Stop thinking that the authorities know what they’re talking about when they’re talking about natural causes and effects. Focus your mind on discoverable evidence.

Treating discernable facts as the ultimate authority, Galileo took to doing real experiments, dropping heavy balls down inclined planes to study relative rates of fall, using careful quantification to find predictable, natural patterns in the world. When learned people around Galileo doubted Copernicus’s idea that the earth is spinning and racing about the sun—because surely, if we were on a moving, turning planet, everything not tied down would be flying about—Galileo encouraged them to think harder. What happens, he asked them, when you drop a solid object while you are on a moving ship? The object falls straight down relative to you and the ship. He encouraged people to see this as real-life analogical evidence that could explain why a table not tied down moves with the earth’s movement and does not fly off. He encouraged them to think beyond the taught or the “obvious,” to see for themselves what was true.

In the spring of 1609, while living the life of a frustrated, underpaid university professor, Galileo heard about a brand-new optical device, the telescope. Ever the self-starter, he soon constructed one—and then a better one, and a better one. Others saw in this device military and commercial uses. (Ascertaining which trading ships were arriving when could provide advance knowledge of the markets.) But Galileo, engaging his radical epistemology of nature, turned his telescopes to the sky. And what did he see? Not at all the perfect geocentric heavens as they were described by the ancients and taught at the universities. No, indeed. The earth’s moon had mountains. (A sign of imperfection in the heavens.) Jupiter had its own moons. (A sign that not everything orbited around the earth.) Venus had phases. (A sign of heliocentrism.) Throughout the sky, Galileo saw evidence of Copernicus’s radical new astronomical model.

Unafraid of these new facts and ever confident in his own genius, Galileo didn’t even try to reconcile his findings with what the ancients had said. Instead he boldly reported his discoveries in a book he called The Starry Messenger. In it, he made a point of including careful drawings to show what the reader could verify with his own eyes if he could get his hands on a decent telescope.

Tempting as it is to see Galileo as supernatural, his surviving writings and the writings of those who knew him personally confirm his humanity for us; they paint him as alternately politically savvy and politically foolish, rash, self-destructive, funny, determined, and devoted to those he loved. And he was deeply human in one other important way: His science was almost certainly motivated, at least in part, by his personal beliefs. The mythical tales of Galileo told by artists like Bertolt Brecht hold him up as a scientific saint, someone who could see completely beyond himself. But as the biographer David Wootton has argued convincingly, Galileo was driven to defend Copernicanism in part because it satisfied his personal psychology: “If Galileo stuck with Copernicanism as the key topic he wanted to write about, it was because he was attracted by the idea of making human beings seem insignificant.”

In the hands of Galileo, the telescope became a tool to investigate not only the stars, but also the human condition. He described a messy universe in which we humans are on just another whizzing planet—not a special, still place made for us by an attentive biblical God—and thus strayed dangerously close to the sorts of heretical ideas that had gotten his contemporary Giordano Bruno convicted of heresy. Bruno ended up burned at the stake for putting forth bold new visions of the universe. But Galileo—in spite of repeatedly attracting the attentions of the Inquisition, in spite of being legitimately scared of being subjected to imprisonment and torture and more—could not seem to stop himself from pursuing Copernicanism, from pursuing what he saw must be true about our vast universe, and especially about the rather negligible place of us humans in it. Moreover, he couldn’t stop himself from promoting scientific truth in risky ways, even by making the pope look foolish.

This period is often considered the beginning of the Scientific Revolution, but you can see why that term doesn’t really capture what Vesalius, Copernicus, Bruno, and especially Galileo were doing. What they were doing was much more radical: This was a revolution in human identity. This was not only a shift in ideas about what we can know about the universe, but fundamentally a shift in what we can know about ourselves. This was a journey toward what finally became the Enlightenment. When Galileo rejected the Vatican’s astronomical dogma, he wasn’t rejecting only their “facts” about our planet and our sun; he was also rejecting the Church’s right to tell us who we are. There’s no doubt: The inquisitors were spot-on to see Galileo as extremely dangerous.

Nevertheless, although the Inquisition could arrest Galileo, it could not arrest human progress. The Scientific Revolution that swept through Europe was soon followed by democratic revolution. And all of these massive changes in science and in politics depended on a single central idea, one that Galileo held dear, the central idea of the Enlightenment: that we get to know for ourselves who we are, by seeking evidence, using reason, and coming to thoughtful consensus on truth. Science and democracy grew up together in Europe and North America, as twins; it is no coincidence that so many of America’s Founding Fathers were science geeks. The “American” freedoms to think, to know, to learn, to speak—these were the freedoms that the radical Galileo had seized, long before they were finally written into our laws. As much as Thomas Jefferson and John Adams and George Washington, Galileo Galilei ultimately made our democracy possible.

 • • • 

THEREFORE IN MAY 1993, I expected that what Saint Peter’s Basilica would have been to my mother on our trip to Italy, the Florence museum room now containing Galileo’s telescopes would be to me. As it turned out, however, I was lucky to get in to see the collection at all. A couple of days before I arrived, mafiosi had bombed the Uffizi, killing six people. In response, the entire city had gone on strike. When I alighted from the train, everything was still closed. Not sure what to do until my train left for Paris the next evening, I wandered over to the Basilica of Santa Croce—churches always stay open, of course—and spent some time admiring Galileo’s magnificent tomb, the tomb they’d built him about a hundred years after his death, when people had come to realize he had been right.

The next day, a few hours before I had to leave Florence, the part of the Uffizi that held the history of science collection opened. The docent handed me an English-language self-guided tour brochure, and I moved slowly from item to item, pausing especially to appreciate the evolution the telescope had enjoyed in Galileo’s own hands. Eventually I came upon a strange object—a relic, like the religious relics my mother and I had just visited all over Italy, perched on an alabaster pillar, protected under a beautiful dome of glass. This, the guidebook explained, was Galileo’s middle finger.

It seems that when Galileo’s body was moved, a century after his death, from a too ordinary grave (the grave of a heretic) to the grand tomb in the basilica (the grave of a hero), a devotee chopped off Galileo’s middle finger and arranged this little shrine. A fellow named Tommaso Perelli had provided a Latin inscription for the marble: “This is the finger, belonging to the illustrious hand that ran through the skies, pointing at the immense spaces, and singling out new stars, offering to the senses a marvelous apparatus of crafted glass, and with wise daring they could reach where neither Enceladus nor Tiphaeus ever reached.” (In Greek mythology, Enceladus and Tiphaeus, aka Typhoeus or Typhon, were giants who stormed heaven and led a revolt against the Olympian gods, only to be thunderbolted and crushed under Mount Etna by Zeus.)

Now, I knew that in Italy sticking your middle finger up doesn’t mean what it means in the United States. But the more I thought about it—about Galileo’s contentious nature, his belief in the righteousness of science, his ego, his burning knowledge that he and Copernicus were right, and especially about what the Church had put him through—the more amusing the middle finger thrust skyward seemed. I mean, of all the remnants, how perfect is it that with his remaining relic, the old man is eternally flipping the universe the bird?

Eventually I couldn’t stand it anymore. I just burst out laughing, dropping the tour brochure on the floor. I picked it up and found the docent giving me a rather severe look. But I couldn’t help myself. I started laughing uncontrollably again.

Somewhere on the crazy journey of the last few years, I stopped laughing at the image of Galileo’s mummified middle finger and started thinking of it as a personal talisman. I would contemplate it to remind myself of certain propositions: That the mythical Galileo, a perfect man who could see beyond his own needs and his own psychology, never really lived—that uncomplicated heroes don’t exist among the living. That all of us are struggling with the question of who we are. That sometimes people put you under house arrest because they honestly believe it is for the greater good. That it can be very hard in a moment of heated debate to tell who is right—it can take a hundred years and a thousand people to sort it out. As one person trying to get it right, sometimes the best you can do—the most you can do—is point to the sky, turn to the guy next to you, and ask, “Are you seeing what I’m seeing?”

CHAPTER 1

FUNNY LOOKING

YOU KNOW YOU’VE HIT UPON an interesting research topic when in a single week you get interview requests from both Penthouse magazine and Christian Life Radio. And you know you’re doing something promising when both interviewers tell you they agree with your political stance.

That was my life, and this was my stance: Children born with genitals that look funny but work fine should not be surgically altered just because their genital appearance upsets or worries some adult. Big clitorises shouldn’t be shortened, and baby boys with very small penises shouldn’t be sex-changed just because their phalluses induce Freudian crises of confidence in their caregivers. People have the right to grow up with their genitals intact unless there is some dire medical emergency.

Not too surprisingly, the interviewers from Penthouse and from Christian Life Radio didn’t agree with each other on the reasons for backing me up. The Penthouse guy’s attitude was that no one should mess with your sexuality without your consent. He understood that the elective pediatric “normalizing” surgeries in question carry a lot of risk to sexual function and health and that sexual function and health really matter to one’s life. Meanwhile, the Christian radio guy’s position was that God doesn’t make mistakes when he sends babies into the world. He didn’t see the children in question as tragic failures meant to be corrected by some surgeon who apparently thinks he’s more skilled or more compassionate than God.

I liked both their attitudes because, heck, it was 1998, and somebody in the real world was agreeing with me—just what the pediatric surgeons were telling me would never happen. Two somebodies, even! I mean, sure, the surgeons expected my message to be championed by my fellow academic feminists with hair as short and glasses as rectangular as mine, but that, they assured me, would be the limit of the “tolerant” population as far as genital anomalies were concerned.

“Honey,” a very high-up surgeon once said to me right around this time, after hearing one of my talks, “you just don’t understand. The parents in our clinics can’t handle this.” When a baby is born with ambiguous genitalia, he explained to me, the mother cries, and the father gets drunk. If you let a child with ambiguous genitalia grow up without surgery, he went on, the kid will commit suicide at puberty. That’s just the way it is. You can’t change society.

The surgeon telling me this apparently thought that I, a lowly assistant professor not long out of grad school, would simply yield to his authority, as did his medical students and residents and the parents of his patients. But I knew these surgeons’ central argument—you can’t change society—to be simply counterfactual. Here I was, a woman, in pants, with a PhD; my identity had come into existence only because society had been changed—and quite recently, too. But if I tried to tell these surgeons that together we could change society, they would see me as wanting to sacrifice babies on the altar of a radical social agenda. So instead I just took to answering these docs with a joking paraphrase of another uppity historian, Winston Churchill: History will vindicate me, and I will write the history.

I kept reminding myself, you can’t really blame these guys for their myopia. Surgeons are taught to think in terms of days and weeks. They are trained to focus intensely on the surgical field immediately before them. I had an advantage here, being trained in history. Temporal depth perception spanning millennia means you not only can see the potential to enact meaningful social change in terms of identity politics, but also you can see that, no matter what you do, you’ll eventually be forgotten. There’s something really liberating in knowing you don’t matter.

 • • • 

HUMAN SEX COMES in two big themes—male and female—but nature seems to enjoy composing variations on those themes. Some sex variations occur at the level of sex chromosomes, some at the level of hormones, some at the level of hard-to-detect internal structures, and some at the level of anatomical parts you can see with the naked eye (assuming your eye isn’t the only thing that’s naked). If you call all of these variations intersex, you can then ask how common intersex is. That’s a question people love to ask. The problem is that to answer that question, one has to first decide how subtle a variation to count. How small should a penis be to count as intersex rather than male? How big a clitoris should count? How subtle a difference in hormone receptors? The truth is that human sex isn’t simple. Human sex is practically fractal.

Nevertheless, wherever nature draws unclear boundaries, humans are happy to curate. And the specialist curators of sex tell us this: In America today, about one in two thousand babies is born with genitals so notably intersex that a specialist team is immediately called in. About one in three hundred babies has genitals unusual enough that the average pediatrician will give the parents a referral to a specialist. If you add up all of the dozens of kinds of sex anomalies—including incredibly subtle things you might never know you had without the benefit of a lot of fancy medical scans your insurance company probably doesn’t want to cover—the frequency of intersex in the human population comes to about one in a hundred.

I was twenty-five and in graduate school before I ever learned that sex anomalies happen in humans. Years later, when I had become an assistant professor, I found out that a boy I’d grown up with had been born with ambiguous genitalia. My mother revealed this to me after reading some of my work, and when she revealed it, I asked her where that old friend was now. I told her I wanted to connect him with the support groups that had sprung up.

“Oh no,” she answered, “we never told him.”

This was exactly what I was then documenting in my work—how babies born with sex anomalies were “fixed” and then promptly swaddled in shame, secrecy, and lies.

The topic of hermaphroditism had been suggested to me early in my graduate career by Fred Churchill, the man who became one of my dissertation directors. Fred didn’t understand feminism—I remember that, one day, he admitted, befuddled, “I still don’t get what’s feminine about feminism”—but he believed in supporting students’ interests, and mine was gender. Following Fred’s suggestion, I thought I should look at the history of embryology and Charles Darwin’s study of barnacles. (Those barnacles were hermaphroditic.) But Fred kept saying, “Look at medicine.” Why? I wondered. Hermaphroditism doesn’t happen in humans past the embryonic stage. Then a second graduate advisor who knew I was on to hermaphrodites also said, “Look at medicine.”

So I looked. I went over to the university’s main library and pulled the second H volume of the worldwide index of nineteenth-century medical literature, The Index-Catalogue of the Library of the Surgeon-General’s Office—the comprehensive government-run index of medical reports that eventually came to be known as PubMed. To my shock, there I found pages and pages listing case reports of human hermaphrodites from the 1800s. Hermaphroditism in newborns, in children, in adults, and in dead old people who just happened to get dissected by some lucky anatomist. Cases recorded in England, France, Germany, Poland, the United States, India, and just about every other locale known to Western medicine.

Why had I never heard of this?

I decided then to do my dissertation work on the history in science and medicine of what happened to the people labeled hermaphrodites in late-nineteenth-century Britain and France. These were people who either had mixed-sex anatomy externally or who were found via surgery or autopsy to have one apparent sex on the outside of the body and the other on the inside. There was a nice set of about three hundred papers, mostly medical journal articles, that I could use as my primary sources, and the period was particularly interesting because it was a time when homosexuals and women had started agitating to loosen gender norms. I figured it would be interesting to see what medical and scientific men, who tended to be politically conservative, did when confronted with natural sex blurring, given that their abhorrence of women’s suffrage and men-loving men was based on the “fact” that such things were fundamentally unnatural. Britain and France also made practical sense because they would be nice places to go on dissertation grants, and I could read English and French. Truthfully, the French was sometimes hard, but Fred helpfully suggested that translations often go faster if you drink a bit of wine from the region where your texts originated. (I still can’t drink French wine without thinking about sex.)

During a cold snap in February 1994, I flew to Bethesda, Maryland, to the National Library of Medicine, to collect more material for my work. On the plane, I was seated next to an army doctor who was in charge of HIV management for the military. He asked me what I was working on, and upon hearing me describe my project, he sternly said to me over his reading glasses, “Hermaphrodites are not a marketable skill.” Even so, it was obvious he wanted to hear more.

In history as in science, you look for what changes and what is stable, you look for correlations, and you pray to find evidence of causation. I had a lot of data to work with—more than I could manage with just my brain and marginalia—so I took my three hundred primary sources and created a computer database of their components to see what patterns I could find. I tracked specific patients based on the demographics the medical reporters gave about them, to see if they might pop up more than once in the medical literature. (This enabled me to “watch” one poor nineteenth-century Frenchwoman with a herniated testicle wander from doctor to doctor looking for some productive help.) I cataloged individual scientists and doctors to track who was reporting what when. And then I cataloged each individual article’s specific report, opinion, or theory—if it expressed one—about Adam’s apples, beards, behaviors, breasts, clitorises, erotic orientations, gonads, hair, interests, labia, menstrual signs, penises, prostates, scrotums, skeletal proportions, uteruses, voices, vaginas, and vulvas. Doing this allowed me to sort, for example, by breasts, to see whether there were patterns or shifts in what medical and scientific men thought about the meaning of feminine breasts in a supposed man, or the meaning of perky nipples in a manly woman.

I ended up with notebooks filled with hundreds of dot-matrix-printed, three-hole-punched pages of data—and a growing clarity about what had happened. Over the course of the nineteenth century, there were more and more doctors, more and more people were going to doctors, and the medical profession was enabling and rewarding publication, so the incidence of reports of humans with sex anomalies shot up and up. This alarmed the medical men even as they were tremendously fascinated. After all, social order was based on the presumption that it reflected natural order, yet nature seemed to have a very bad habit of not picking up after herself.

Upon expert examination, a surprising number of people showed obvious external ambiguity in their genitals. Others mixed a masculine chest and beard with feminine genitalia or feminine breasts with a penis. Still others looked all well and good on the outside but were discovered (during surgery or autopsy) to in fact have the other sex’s organs inside. A very few even claimed they were clearly female as children but had become quite manly at puberty.

Notably, most of the people who showed up in the nineteenth-century medical literature with sex anomalies seemed either not to know or not to be terribly bothered. Sometimes a woman wanted an explanation as to why her vagina seemed to be too small to accommodate her husband’s penis. A man and his wife wanted to know why the husband seemed to bleed on a monthly cycle, while a chambermaid in another city wanted to know why she never seemed to menstruate. On rare occasions, a child or an adult was reassigned from one gender role to another after being diagnosed as a victim of “mistaken sex.” (The “mistake” was often blamed on some stupid midwife.) But most often, nineteenth-century patients with such traits just went on with their lives as before their clinical exam, probably never knowing just how high they’d made the doctors’ eyebrows rise.

Late-nineteenth-century medical and scientific men had little interest in changing social mores just because nature was turning out to be a bit churlish where sex was concerned. Instead they opted to impose order on nature as best they could. They came to a consensus by the 1890s that made sex look a lot more organized than it really was. They decided that “true sex” would depend only on the gonads: If you had ovaries, no matter how many manly traits they came with, you were really a female (though perhaps a female pseudohermaphrodite); if you had testes, then you were really a male (though perhaps a male pseudohermaphrodite); and only if you were absolutely positively proven to have both ovarian and testicular tissue were you a “true hermaphrodite.”

Conveniently, because biopsies were not possible at this time, the only people who could be conclusively labeled true hermaphrodites were at least castrated and more often dead. This approach pretty much neutered any threat that hermaphroditism might have posed to the social order. Virtually everybody was really male or female; sex just looked blurry to the untrained eye. Problem solved. As I documented this cleverly constructed solution to blurry sex, I decided to label this period the Age of Gonads.

Of course, not too much later—in the 1910s—biopsies did become possible, and the Age of Gonads had to cease. Suddenly doctors could conclusively diagnose working ovaries in men, working testes in women, and ovotestes in both—not a happy thing unless you’re a gender radical. So again doctors did what they had to do to preserve the two-sex social order. Although they still categorized a patient’s “true sex” according to gonadal tissue, in practice they classified patients according to which gender was most believable. If an attractive housewife happened to have testicles, no one besides her doctor needed to know her diagnosis of male pseudohermaphroditsm. If a man really was menstruating, you just quietly took his ovaries out and hoped no one found out about his insides. Doctors continued to clean up nature’s little indiscretions and thus take care not only of individual bodies, but also the social body.

Given the way intersex could always threaten a sexist two-gender society, this approach of “cleaning up” nature’s sexual “mistakes” persisted in American medicine, leading in the 1950s to the key collaboration at Johns Hopkins University of Lawson Wilkins, the founder of pediatric endocrinology, and the psychologist John Money. Together Wilkins and Money formalized this cleanup approach to sex anomalies. Modern medicine now sought to reinforce the “optimum gender of rearing” by early management of children born with sex anomalies by means of “sex-normalizing” surgeries, hormone treatments, delicate euphemisms, and sometimes lies.

This, then, was the system of concealment that led one day to my mother’s remark to me about my childhood friend: “Oh no, we never told him.” This was also the system that led to a lot of really angry intersex adults who discovered that they had been harmed by the medical care meant to “save” them and who knew the same basic system was still being used on children who would likely grow up as hurt and angry as they were. In the early 1990s, a core group of these people formed the intersex rights movement I eventually joined. Some of these intersex adults had been physically harmed—left with damaged sexual sensation, incontinence, or repetitive infections. Many had been psychologically harmed—left with a sense of having been too monstrous for their parents to accept as they came, of being sexually freakish, of being fountains of familial shame. All were left with a burning desire to try to save others from going through what they had.

I knew about the nascent intersex rights movement as I worked on my dissertation in Bloomington, but I mostly ignored it. My graduate school professors had taught me that history is about the dead. Yet shortly after I started to make public my research findings, I found myself in dialogue with Bo Laurent, the founder of the Intersex Society of North America (ISNA). As I recall, I first talked to Bo by e-mail using her public activist name, Cheryl Chase, a name she had hastily chosen as a nom de guerre early in her activism. As soon as I learned that another intersex activist named Bo Laurent lived in the same region of northern California as Cheryl Chase, I tried to bring Bo and Cheryl together. She politely explained I was trying to introduce her to herself. I easily fell into the habit of publicly referring to my work colleague, the leader of ISNA, as Cheryl, and privately calling my new friend Bo.

Bo was fascinated by my findings and immediately proved herself to be a voracious and intelligent audience of intersex history. Besides being geeks and history buffs, Bo and I shared what I later realized was a rare trait in activists: a belief in evidence even when it challenged our political goals. While it would have been convenient for Bo if I could have told her that no one in the nineteenth century sought surgeries to make their own genitals look or act more normally, she readily accepted my data that a few people did. She also readily accepted my conclusion that we couldn’t know much about why a few people in the 1800s seemed distressed about their own anomalous sex while most seemed fairly unconcerned. The data was incomplete, and rarely could it tell us about something as obscure as the psychological history of an unnamed, one-time patient who probably died before we were born.

I realized as soon as she told me her personal history that in Bo I had met someone who actually represented in the flesh that old Victorian compromise with nature that I had documented in my dissertation. That is to say, because of the fears of my dear Victorian doctors, Bo was to be counted as a true hermaphrodite simply because she had been born with ovotestes. (An ovotestis is usually kind of like an ovary wrapped up in some testicular tissue. And no, even if you have one, you can’t make both viable eggs and sperm.) Even though genetics, endocrinology, and other sciences had traversed a thousand miles from the Age of Gonads to the age of ISNA, that Paleolithic terminology based on gonadal tissue was still in place. (Bo and I later successfully worked to get rid of it once and for all.)

Bo had also been born with ambiguous genitalia. The doctors were so upset when that baby had come out, in 1956, that they kept sedating the mother while they figured out what to do. After three days, they finally let Mrs. Sullivan wake up and go home with the baby the Sullivans decided to call Brian—a boy understood to be healthy but sexually defective. They also sent Mrs. Sullivan home with strict instructions not to let anyone know that this child had a malformed phallus and a vagina. Mrs. Sullivan understood that she had to do all the diaper changes herself, and hide the disaster forever.

When Brian Sullivan was about a year and a half old, a team of doctors at New York–Presbyterian Hospital discovered via exploratory surgery that Brian had a uterus and ovotestes. The doctors realized that these organs might mean that they could turn this genitally unconvincing boy into a fertile girl, so they completely removed the phallus of the child, who at that point, on their strong recommendation, became Bonnie Sullivan. When she was eight, without anyone explaining anything to the bright and perceptive patient, Bonnie Sullivan was sent back to the hospital and her testicular tissue was removed. (This later surgery, removing the testicular portion of the ovotestes, may well have prevented Bonnie from getting a form of testicular cancer. We have never argued against that kind of surgery, which evidence really did show was lifesaving.)

When she became a sexually active lesbian as a teen, Bonnie Sullivan quickly figured out that she was missing a clitoris and, more important, missing sexual function. She could not have an orgasm. To make a harrowing long story short, eventually she sought out people like herself, found them, and marshaled her lesbian feminist political consciousness to fight the system that had taken so much from her. In 1995, as she broke with a past that had never really been under her command, Bonnie Sullivan took on a new name. Bo was a short form of Bonnie. She chose her last name, Laurent, as a tribute to the deaf activist Laurent Clerc and in remembrance of her own grandparents, who had been deaf. Bo understood that intersex had to go where deafness had gone: from the realm of the “defective” to the realm of rights. She started looking for peers and allies anywhere she could find them.

Not long after we started communicating, Bo asked me—as she asked perfect strangers all the time—to help her change the medical system for treating intersex. At first I resisted. As I explained, I was just a historian, somebody who deals with the past, and a newly minted one at that. I also thought it would be a little odd for me to get involved in a movement for rights that did not directly affect me—although having been raised with a brother who is identified as black in an otherwise white family, I did get that civil-rights movements need anyone with the power to help. Hearing Bo’s gentle plea, I also found myself remembering something my mother had said to me before I left for Indiana to study the history and philosophy of science: “I hope you study philosophy, because maybe then you can at least help people think more clearly. History is just about what’s already finished.” The implication: there’s no social good in being a historian.

In any event, Bo pushed me, in her typically blunt yet soft-spoken way, to consider putting my feminist money where my mouth was. Just look, she said, at what today’s medical books say. That was easy enough. Right around the time I had been told hermaphrodites are not a marketable skill, I had fallen in love with a medical student in Bloomington. I had moved in with Aron a few months later, when he had to start his clinical rotations in Indianapolis. As a consequence, my history books were on one side of our little apartment’s living room, and Aron’s medical books were on the other, so, on a break one day, I pulled his books and looked up the standard of care for genital anomalies. This would have been in 1995.

Basically, what Aron and his classmates were being taught, in the latest medical books, was this: If a baby is born with a large clitoris, she might turn out to be a lesbian, so you have to cut down her clitoris. If a boy is born with hypospadias—wherein the opening of his urethra is not at the tip of the penis but on the underside or down near the scrotum—he will not be able to write his name in the snow next to other little boys, and then he might turn out gay. Therefore you have to do a “corrective” surgery to make sure he can pee standing up. Mind you, this surgery failed so often that doctors had a special term for the men in whom it failed. They were called hypospadias cripples, because life is tough with a surgically scarred, infection-prone penis, but, the urologists insisted, you had to try to get that boy to pee standing up. Or else.

Huh?

When Aron got home from the hospital that day, I showed him the relevant passages in his books. I then asked him if he had written his name in the snow next to other little boys. “No,” he said, putting both his hands to his cheeks in a mockery of the book. “Do you think I might be gay?”

We were both pretty stunned. OK, I thought, I’ll help Bo. I’ll go to these doctors with her, and we’ll reason with them. We’ll use data from history and medicine. We’ll say, Look, this system was developed before gay and lesbian rights, before an appreciation for women’s sexual health, before modern medical ethics. There’s no evidence to support this heterosexist system of shame and secrecy as good for the patients, and there is evidence, albeit anecdotal, that this approach is unnecessary, unsafe, ineffective, and deeply harmful. Parents can learn to raise these children as boys and girls without cosmetic genital surgeries; we knew of some who had. Intersex children can be told the truth about their bodily differences, and they can grow up to decide for themselves what they want to do with their own bodies in terms of optional medical care.

And to all this the doctors would say, “Oh, gosh, yes, we’ve been meaning to fix this. Thanks!” And it would all change.

Aron kept shaking his head at me. “Medicine is not like that,” he’d say. “Medicine is often not rational and not evidence-based.” But he’d say it not so often nor so firmly as to discourage me. Aron has a theory that, for the sake of progressive change, people should sometimes be left in a state of productive naïveté, and that was his prescription for me in this case. So I plunged ahead, thinking reform of the system would take about six months, maybe twelve at the outside.

Bo must have figured out early that she needed to keep me motivated, so she did something really smart. She brought me around to meet as many intersex people as she could and made me listen to their stories. I started listening with a tape recorder and often found myself losing it, breaking down crying. In the medical literature, all of these people were “lost to follow-up.” They had dropped out of treatment and were invisible to medical surveillance, so what few outcomes studies there were (and there were almost none into adulthood) did not count them. No one really understood what these people had been through. I mean, a few people had heard these individuals’ stories one-on-one, but no one except maybe Bo and a couple of other intersex people had heard how this population had suffered collectively.

There was Martha Coventry, who had had most of her “enlarged clitoris” cut off when she was six, because her parents were worried about gender confusion. There was David Cameron Strachan, who as an adult had been diagnosed with Klinefelter’s syndrome (XXY chromosomes) and had been shot full of testosterone by a doctor who maybe had thought that upping his sex drive would turn David from gay to straight. (Instead, it had made David uncomfortably hairy and horny, and he’d headed right to the San Francisco Castro District, just as HIV was arriving there, too.) There was a woman whom I’ll call Beth Lawrence, who had learned that she’d been born with testes when she had opened a sealed envelope that a doctor had told her not to open but to give straight to her next doctor. Beth had opened it in the parking lot outside her doctor’s office and found a medical journal article about her, her sisters, and her cousins, none of whom had been told they had testes. The article featured a large photograph of Beth as a teenager, standing naked in a medical setting, with her head cropped off—I suppose to keep her from being recognizable as Beth Lawrence.

Of course, the pose and the crop also kept her from being recognizable as fully human. Beth still had that journal article, which she kept in the original envelope. Sitting in her backyard with her and Bo and looking at the article, I realized something bizarre: When we’d first met, I had insanely expected that Bo would walk up to me naked in black and white with her eyes blacked out. That’s how the medical journals had led me to think of contemporary intersex people. Even though I had been conversing with Bo by e-mail, I had subconsciously expected her to show up naked with a helpful grid behind her, her arms and legs splayed so as to show off her proportions to the medical student gazing upon her in the book.

The fact that intersex adults actually meet you in full color, with their clothes on, with families and lives and mortgage debt and a lot of pain and trails of therapists who didn’t even believe their unbelievable histories—this all just made me more and more upset. Pediatric endocrinologists and pediatric urologists came to my invited academic lectures and told me they felt sure their patients were all doing fine. That just made me disoriented. Where are these happy patients? I asked. They told me they could not say. Privacy prevented it, they said. Ask your happy patients if they will talk to me confidentially, I said. Oh no, they said. We wouldn’t want you upsetting them. “But,” one assured me, “I know my patients are doing great because I get invited to their weddings.”

“That’s sweet,” I answered, trying to hide my sarcasm. “How many have you been invited to?”

“Um . . .” He hesitated. “One, I guess.”

Bo also introduced me to a few people she’d found who had grown up with ambiguous genitalia, having gone “uncorrected” for various reasons. There was one woman whose sexually sensible mother had decided there just wasn’t any good reason to follow the doctor’s advice to shorten her young daughter’s noticeably long clitoris. There was another who had been too sickly as a child to be sent into elective surgery and so had escaped, growing up unharmed and ultimately pursuing a career in medicine. A third I met because she came to hear a talk I was giving in her town. This woman came up to me after my lecture to say she thought she might be intersex, because her clitoris was bigger than most. “How big?” I asked. She showed me her little finger and said she used her clit to penetrate her partner’s vagina, quietly adding that they both enjoyed it.

Whenever I felt my energy starting to flag, the universe seemed to send me something to renew my sense of urgency. One day Aron found himself having to calm down a young woman who had just been told by one of Aron’s internal medicine residents that she was really a male pseudohermaphrodite—that she was really a man—because he had figured out that she had testes inside. Aron called to get from me the name and number of a representative of the Androgen Insensitivity Syndrome Support Group. Another day, I got a call from a nineteen-year-old man who had just found out he had ovaries and a uterus inside of him. One of his doctors was suggesting he get a “sex change” so that he could be a woman and have a baby. I knew just how badly that doc wanted that publication.

“Do you want to be a woman? Do you think of yourself as a woman?” I asked the young man.

“No,” he said, “but the doctor says because I have ovaries . . .”

“Look,” I told him, “I don’t let my ovaries tell me what to do. I don’t think you should let your ovaries tell you what to do.”

I especially remember sitting at work in my Michigan State University assistant professor office one day and out of the blue getting a call from a weeping pediatric nurse I had never met. She calmed down just enough to explain to me that they had a baby in their pediatric ICU who had been sent into surgery to make her genitals look more normal. The baby had gone into surgery healthy. The anesthesia had gone wrong, as it sometimes does in babies, and now she was going to die. This little girl was going to die just because her clitoris had been “too big.” And now her parents would have to live with that twisted memory of guilt, shame, and grief. I knew that story would never enter the medical literature. Surgeons rarely report when it all goes wrong. They have their own guilt, shame, and grief, typically left as unprocessed as the parents’.

 • • • 

DAY BY DAY, the Intersex Society became increasingly intertwined with my existence. When Bo decided to legally incorporate, she asked me and Aron if she could use our home address, because we had a stable residence and were actively involved. Upon incorporation, I became the first chair of the board of directors, and if I remember correctly, Aron became vice president. We didn’t expect him to actually do anything; we just needed a certain number of signatures, and we thought that having MDs on the board would help persuade the IRS to give us nonprofit status. Bo’s partner, Robin, took some other executive title. I started joking that our first task should be to work on the board member–to–bed ratio. The final addition to the board was another Michigan State medical faculty member, Bruce Wilson, one of the first pediatric endocrinologists to say we were right.

We worked with a small army of other intersex activists who were also out there pushing for change. Many of them, like Max Beck, Mani Mitchell, Emi Koyama, Hida Viloria, and Tiger Devore, told their own stories on television and in documentaries and spoke to any group that invited them. Early on, Bo gave me a handful of “phall-o-meters” to start handing out, a little tool developed by the intersex activist Kiira Triea. The phall-o-meter showed graphically how doctors decided whose phallus would be cut and to what length to make them fit social norms. It was a to-scale measuring stick that went from “just a girl” (for a small clit) to “fix it quick” (in between) to “phew, just squeaks by” (a barely acceptable penis) to “OK” to “Texan” to “Wow, surgeon!” (for the big ’uns). I handed these out on all sides and left them behind everywhere, between the pages of in-flight magazines, in the stalls of women’s bathrooms on campuses I was visiting, and in the hands of all the surgeons I ran into. The male surgeons just loved them.

Bo had taught me this blitzkrieg method. We simply took every opportunity that came along and sought out any others we thought might work. She encouraged me to keep working the academic angle, and I did, doing scholarship in support of the movement. The last chapter of the book based on my dissertation provided an extensive ethical critique of the modern-day management of intersex. That it had Harvard University Press’s name attached definitely helped. I spun off that last chapter as an article for the Hastings Center Report, the journal of the leading independent medical ethics institute. The next book I published was an edited anthology called Intersex in the Age of Ethics.

For that collection, Bo and I wanted a front cover that showed the contrast between the monstrous medical image of intersex and the real lives of intersex people—to make the point that you never know who around you is intersex and the point that the medical approach is what makes someone a monster. We had realized how powerful images were in getting people to change their thinking. So we took photos that all the contributors—intersex and non-intersex—gave us of themselves, and put those, all mixed up, on the front cover. A few were bare-chested men; most were fully clothed. You couldn’t tell who was intersex and who wasn’t. For the center of the montage, we wanted a classic medical image—naked, eyes blacked out, against the grid—but I didn’t dare use a real image and reexploit someone. I can’t remember if Bo or the publisher suggested it, but one of them said to me, “Why don’t we do a picture of you, Alice?”

So I paid a university photographer whom I’d come to know fifty bucks to meet me at his apartment and photograph me naked standing in the “medical pose” with a band of paper meant to look like a hospital ID bracelet taped around my right wrist. He then used Photoshop to put a grid behind me and a black band over my eyes. He also blurred out my naughty bits. (I didn’t have tenure.) When my friends and students saw the book, they immediately recognized me. So much for the idea that the black band makes any difference! I just told them I do nudity only if the plot requires it.

The plot required so much. Time, money, and lots of personal effort to keep the activists from infighting due to jealousy, philosophical differences, and pent-up fury. And so much effort to keep Bo from falling into another black abyss of posttraumatic depression. Because I could write and speak well, I did one television show after another, quickly learning what to wear (no white and no small prints; lots of powder and bright lipstick; a serious look with a kind smile) and how to wrap a clear message around a killer story. I wrote newsletter material, teaching materials, and fund-raising appeals. I learned how to ask people, point-blank, for money to support us. Money was always short; Aron and I regularly dumped in infusions of cash, trying to keep enough in the till to keep Bo from having to do other work, so she could stay focused on ISNA. A sizable percentage of the donor list was made up of our personal friends and family members. Bo spent down her life’s savings as we pressed on.

Now and again, we caught a break. Someone would invite us to speak at a place where there was a doc with enough doubts that she or he would then sign on to help us. Someone with power would have an adult child who was gay or lesbian, enabling that powerful person to appreciate at the gut level the way that discrimination against sexual minorities manifests in every bit of life.

A big break came in 2000 when John Colapinto published the “John/Joan” story in his blockbuster book As Nature Made Him: The Boy Who Was Raised as a Girl. Colapinto’s work brought to national attention the story of one male child whom John Money had recommended sex-changing after the baby’s penis had been accidentally burned off during a medical circumcision at eight months of age. The patient, now known as David Reimer, had not been born intersex, as most of Money’s patients had been; David Reimer had been born a typical male, with an identical twin brother. But after his circumcision accident, the family was referred to Johns Hopkins and, on Money’s recommendation, the baby had been surgically and socially turned into a girl named Brenda. After all, a boy without a penis (or with a very small one) couldn’t grow up to be a real man! At least that’s what Money et al. had been saying for years. Money must have been thrilled when he encountered the Reimers: Here, in a set of identical non-intersex twin baby boys, was the perfect case to prove his theory that gender identity development depended primarily on genital appearance and upbringing. If one of the Reimers’ twin boys could be turned into a girl, this would be the Hope Diamond in Money’s crown.

Thanks to Money’s desire to use David Reimer to prove that gender is mostly a product of genital appearance and nurture, not inborn nature, Reimer had gotten caught in the Johns Hopkins intersex vortex and had had the same history of shame, secrecy, loss of function, trauma, and anger as many intersex adults. Importantly, Reimer also failed to prove Money’s theory. As little Brenda, he kept acting boyish, and upon being told the truth of his medical history as a teenager, he immediately declared himself a boy and socially became a boy again. Nevertheless, Money simply lied about the outcome, leading everyone to continue believing his experiment with “Brenda” had worked.

Although As Nature Made Him entailed great coverage of our work at ISNA, Colapinto’s account moved people for a reason we had come to resent: The public was ever so upset that a “real” little boy had been turned into a girl. They were upset about the sex-change of a non-intersex child and about having been led to believe that gender is a product of nurture, not nature. To us, the primary issue in these cases wasn’t the nature of gender. Yes, the reason all these kids—Reimer and his born-intersex cohort—had been traumatized was because of a wrong theory of gender that said that we can make you into a boy or a girl if we just make your body look convincing in infancy. But the trauma for most of these folks didn’t come from getting the wrong gender label as a baby.

Bo and I knew what the clinicians knew—that most intersex people kept the gender assignments they were given, whether surgeons made their genitals look typical for their gender or not. And we knew that people who changed their gender labels as teenagers and adults did not find misidentified gender to be the core of their suffering. The problem in intersex care wasn’t a problem of gender identity per se. The problem was that, in the service of strict gender norms, people were being cut up, lied to, and made to feel profoundly ashamed of themselves. Bo said it as plainly as she could: Intersex is not primarily about gender identity; it is about shame, secrecy, and trauma. Doctors were so obsessed with “getting the gender right” that they didn’t see that they were causing so much harm. If they could have obsessed less about gender identity outcomes in these cases and focused on actual physical and psychological health, they might have done a lot less damage. They needed to stop treating these cases as gender identity experiments and start treating them as patients.

But most people didn’t want to hear about shame, secrecy, and trauma when we talked about intersex. They wanted to hear about the nature-nurture debate. Just like John Money, they wanted to use intersex people in the service of their theory building about gender identity. All that happened when people started to take the nature of gender identity seriously was that docs stopped turning boys with micropenis into girls and started pumping them full of risky drugs to try to get their penises to grow bigger. The clitoral surgeries—those kept up.

It would be easy to fall into the belief that these were all evil doctors. Truth is, they were basically good people. They had been told in their medical training the same story the surgeon told me early in my work: If you don’t do this, these kids will kill themselves at puberty. Based on this mythology, they believed they had to do early genital surgeries. Bill Reiner, a urologist who had trained at Money’s gender clinic and who later turned against Money’s approach, told me that he’d once tried to find evidence that kids had killed themselves as a result of being left “uncorrected.” Like me, Bill couldn’t find it.

The myth of teen intersex suicide was part of what my friend Howard Brody, a physician-ethicist, took to calling the maximin strategy in medicine. When a doc “maximins,” she maximizes the number of interventions in the hope of minimizing the odds of the worst possible thing happening to that patient. You operate out of fear of the worst-case scenario. Howard had traced this in obstetrics, and had shown how obstetricians were actively harming mothers and babies during normal births in an effort to keep them from dying. They were throwing every possible intervention at them, because then, if the mother or baby died during a birth, at least the doctor had tried everything. It was just a natural coping strategy in a stressful situation. But when you looked at the aggregate evidence, the interventions meant to prevent the worst harm actually resulted in more net harm.

US

Additional information

Dimensions	0.7700 × 5.4900 × 8.4200 in
Imprint	Penguin Books
ISBN-13	09780143108115
ISBN-10	0143108115
Author	Alice Dreger
Audience	General / adult
BISAC	SCI075000, BIO015000
Subjects	autobiographies, autobiography, science books, biographies, essays, SCI075000, mathematics, history of science, science gifts, genetics, history books, science book, biographies of famous people, history gifts, gifts for history buffs, history buff gifts, history lovers gifts, history teacher gifts, science gifts for adults, science books for adults, innovation, philosophy, feminism, psychology, science, education, health, biography, medical, biology, history, BIO015000, medicine, gender, Sociology, economics, evolution, galileo, neuroscience
Format	General Trade