I KNEW WE’D TURNED A CORNER on intersex rights when I attended a support-group meeting in 2010 and got to hear a high school girl tell the story of how she’d recently found out she was born with testes. This girl—a very pretty, Christian, cheerleader type—told of being taken by her mother to the doctor because, although she was obviously maturing, girl into woman, she had never menstruated. The doctor did a pelvic exam and soon realized the girl had an intersex condition—one that meant that, even though she had developed as a near-typical female in genital anatomy and brain, even though she was sexually maturing in appearance like most girls, she had a Y chromosome and testes internally (and no ovaries or uterus). She was born with a genetic condition that left her lacking the androgen receptors required for cells to respond to the masculinizing hormones being made by her body, so even though she had a Y chromosome, her body had developed close to the female-typical pathway except for some of her internal organs, those whose development depends on something other than androgens.
When the doctor realized what was going on with this girl’s body, instead of withholding information from the patient—as was, until recently, pretty standard—the doctor told her the truth. In fact, not only did that doctor tell her the truth, the physician put her in touch with other young women with the same condition so they could offer her loving peer support. No shame, no veil of total secrecy. Before the gathered audience in which I sat, in which women like her probably outnumbered women like me, this teenager concluded by saying that not only was she not upset that she had been born with this condition, she was grateful for it. Being born this way had taught and given her so much.
Although this young woman’s experience is not yet universal in America, telling the truth is becoming the treatment norm. This progress can be traced to the intersex patients’ rights movement started by affected individuals like Bo Laurent, a movement directly inspired by the movements for women’s rights, civil rights, and gay and lesbian rights. Physicians are finally understanding that when it comes to treating people born with intersex conditions, attributed shame and psychological isolation form the basis for unnecessary trauma. In 2010, the very year that young woman spoke of her awakening, a prominent American surgical specialist in intersex care openly acknowledged in the Journal of Urology that the real problem with intersex is not the child, but the way the child is treated in the clinic: “Secrecy is a recipe for shame, low self-esteem, and psychological disaster, and is to be avoided. . . . It may be that long-term psychological support is of equal or superior importance to the anatomical result [of surgery].”
In Europe, progress seems to be picking up even more quickly. In 2012, following successful political pressure from Swiss intersex activists, the Swiss National Advisory Commission on Biomedical Ethics issued a special report regarding “ethical issues related to ‘intersexuality,’” recommending first and foremost that
the suffering experienced by some people with DSD [differences of sex development] as a result of past practice should be acknowledged by society. The medical practice of the time was guided by sociocultural values which, from today’s ethical viewpoint, are not compatible with fundamental human rights, specifically respect for physical and psychological integrity and the right to self-determination.
In an even more startling turn of events, in 2013, the United Nations special rapporteur on torture recommended that legal actions be taken to stop “forced genital-normalizing surgery” on children too young to consent. The special rapporteur, Juan E. Méndez, said he wished to shed “light on often undetected forms of abusive practices that occur under the auspices of health-care policies,” including abusive “medical” treatments wrought on gender-nonconforming children, gay children, and intersex children.
In the United States and Europe, boys and girls born with sex anomalies are still routinely subject to risky genital-normalizing surgeries that are often medically unnecessary, unsupported by scientific evidence, and difficult or impossible to reverse. When challenged, many American specialists today say that it’s parents, not clinicians, who insist on surgery. Nevertheless, a recent study backs up what I’ve seen in practice: When faced with decisions about genital-normalizing surgeries, parents are likely to go whichever way the clinician advising them is leaning, and in America, most clinicians still lean toward “corrective” surgery. In Europe, where the evidence-based medicine movement is powerful, in part because medicine is socialized, clinicians appear more inclined to a conservative, “first do no harm” approach. Unfortunately, I expect it will continue to be very difficult to get American clinicians who see these interventions as beneficent to pull back except through threat of legal action.
As I write, there is a case wending its way through the American courts brought on behalf of a young boy born with ambiguous genitalia who was surgically made to look female at the age of sixteen months. The surgery occurred at the order of the state of South Carolina while the baby was in foster care. Sometime after the surgery, the child was adopted by supportive parents, who accepted the child’s eventual self-identification as a boy. The family’s lawyers—including Anne Tamar-Mattis, who provided legal assistance to our efforts around prenatal dexamethasone—are arguing that the boy was denied due process as accorded by the Fourteenth Amendment when surgeons fashioned his small phallus to look more like a small clitoris. American intersex clinicians are extremely nervous about what this case might mean to their practices; a ruling in the child’s favor could mean a new era of legal protections for these kinds of children and critical social acknowledgment of the harm wrought on generations of intersex children.
Meanwhile, in the United States, many teenage and adult transgender people still can’t get the kinds of medical and surgical interventions that intersex babies get without ever asking. Fortunately, in the last ten years, there has been a movement toward providing better access to gender-affirming interventions for adolescents and adults who are transgender. More and more clinics at American children’s hospitals are claiming to provide genuinely supportive care to this population.
In fact, the pendulum may be swinging too violently. In the name of being “affirming” of gender nonconforming children, some parents and clinicians now seem too quick to assume that such kids must be subject to gender reassignments that include nontrivial hormone regimens and surgical procedures. (Recall that most gender-nonconforming boys in clinical studies have grown up to be gay men, not transgender women. Many gender-nonconforming girls grow up to be satisfied with their birth gender assignments and bodies.) What looks at first like progress may sometimes amount to the same old rush to normalize “deviance” into a heterosexist two-sex vision of the world, rather than accepting that biology and identity are not the same thing. Calm, evidence-based care in the treatment of gender nonconforming children—care that doesn’t rush to “resolve” their identities—is only now emerging. European clinicians again seem to be leading.
“Born with one sex’s brain in the body of another sex, so needing rescue by the doctor”—that’s still the transgender narrative that goes down smoothest among straight adults, perhaps especially among parents who long for a simple resolution to their seemingly challenging children. But in the United States, there is a growing movement of parents pushing to let gender-nonconforming children just be who they are, without diagnostic perusal and medical intervention. True radicals, these parents of “pink boys” and “blue girls” help other such parents learn to simply love without risky “normalizations,” letting children grow up to decide for themselves what bodily changes, if any, they want to pursue.
I think that not too far in the future, this approach will no longer be seen as radical. American culture has made big strides since the intersex-rights movement began in 1993. Social acceptance of sex and gender variation has certainly increased dramatically in the last decade, and legal protections for transgender people, gay men, lesbian women, and bisexual people have been expanding. That said, many are still subject to housing, employment, and medical discrimination as well as to bullying and bashing. I’m working now on a committee assembled by the Association of American Medical Colleges to try to get medicine to lead in positive social change for people who are in the social minority in terms of their gender histories and sexual orientations. But as of now, American medicine remains a potential venue for oppression as much as for liberation.
There is much reasonable disagreement among transgender activists as to the right role for medicine in transgender politics. Clinicians who work with transgender people know that they are much more diverse in experiences, senses of self, and needs than the general public realizes. Clinicians with whom I speak sometimes express frustration that they have to toe particular party lines (like “transgender always means ‘born trapped in the wrong body’”) or risk being painted as anti-trans, even when they are struggling to put the needs and desires of a patient before politics.
As for Andrea James and Lynn Conway—the two trans women who most intensely went after Mike Bailey and then me—while they are well known among transgender activists, I think it is fair to say that they are not generally viewed as leaders of the rights movement. That kind of leadership comes more from groups like the National Center for Transgender Equality. James and Conway keep up their campaigns against Bailey, me, and pretty much anyone else aligned with Blanchard’s understanding of male-to-female transsexualism as involving sexual orientation as well as gender identity.
My journal article on the Bailey book controversy still brings me frequent mail from men and transgender women who tell me the article helped them figure out that they are autogynephilic in sexual orientation. Some also write to tell me how wrong Blanchard and Bailey are, stating that their gender experiences have nothing to do with eroticism whatsoever or that they are a “third type” not captured by Blanchard’s taxonomy. (Blanchard never said there couldn’t be other types; he simply argued that sexual orientation was salient to requests for gender reassignment among natal males.) In spite of substantial pressures not to do so, in the last five years, more and more people have been openly self-identifying as autogynephilic; some identify mostly as male but live part-time as women, while others identify as transgender women. In 2013, Anne Lawrence, the physician-researcher who self-identifies as autogynephilic, published a groundbreaking book analyzing hundreds of autobiographical narratives of autogynephilia. The book encourages all readers to understand that, for those autogynephilic natal males who choose permanent social transition, the gender identity of female makes the most sense for their lives—that fully taking on a female identity is not a game, a fantasy, or a fetish, but a necessary means of survival, just as coming out is for gay and lesbian people. The work of Lawrence and others continues to show that transition greatly improves the psychological and social lives of transgender people who seek it and are given supportive care, including access to the desired hormonal and surgical interventions. Their lives are, on average, made safer and better.
Meanwhile, some researchers keep looking to see if they can find evidence that transgender people really do have the brain of one sex in the body of the other. Results of such work are mixed and difficult to analyze, in part because the sex-specific parts of the brain can change even in adulthood—for example, when someone starts taking cross-sex hormones. For my part, I hope we never require biological “proof” to believe someone’s self-declaration of gender. As one wise guardian of a seven-year-old child with intersex once said to me, “We don’t need another blood test to figure out who he is. He’s already told us he’s a boy.” That, it seems to me, is all we ought to require of people as we “decide” what genders they are. How they got there may be scientifically interesting to us (it certainly is to me), but how they identify themselves as individual persons in terms of gender is for them to decide.
Anne Lawrence’s career trajectory is typical of researchers who have been put through the wringer for making unpopular identity claims: Such people don’t change course just because they’ve had the snot kicked out of them. Among all of the researchers whom I interviewed specifically because their work got them into trouble, not one has disavowed the controversial research. A lucky few have found their work now generally in favor. Elizabeth Loftus, for example, is now widely recognized as having been right about how fictional “memories” can be implanted in the human brain, even in some cases of alleged childhood sexual abuse. Ed Wilson’s basic idea that there are evolutionary bases for human social behaviors is now more accepted among the general public and even academics.
Like Wilson, some researchers whom I met because of their intense political messes are now doing less controversial work, not because they’re afraid of shitstorms but because they don’t need them. (They lack the Galilean personality.) For example, since A Natural History of Rape, Craig Palmer has been studying social networks of Newfoundlanders and representations of rescuers in Holocaust museums. Chuck Roselli (the “gay sheep” guy) has continued to be interested in hormonal effects on the brain, but he’s also been working on understanding how certain herbal preparations might help treat prostate cancer.
Among those with the Galilean personality, Mike Bailey has continued to study sexual orientation, collaborating on one project looking at the genetic basis of male homosexuality and on another aimed at understanding what sexual arousal looks like in the brains of bisexuals. Although age has taken the sharp edge off his style, life has not exactly quieted down for him. In early 2011, a couple of years after my work on his controversy came out, Mike managed to get himself in a whole new round of trouble by allowing a pair of exhibitionists to demonstrate something called a fucksaw in an after-class special for students in his Northwestern human sexuality class. In case you’re not familiar with tools that require shopping at both Good Vibrations and Home Depot, a fucksaw is a do-it-yourself sex toy made by combining a reciprocating saw with a dildo. (At least that’s how it has been described to me; I can’t say I’ve had the pleasure.) News of this event leaked out into the local, then the national, then the international media. I heard about it accidentally via CNN.
When I got together with Mike over a tense drink to talk about it, I asked him what he was thinking to allow a live sex demonstration in the Ryan Family Auditorium on Northwestern’s Evanston campus. He replied, “Well, Alice, the fucksaw couple asked me before that if they could do fire play”—sex games involving fire—“and I answered, ‘No! That’ll get me in trouble!’” Hearing this, I involuntarily smacked him in the head. The only upside was that Aron took to referring to Mike as the Fucksaw, simplifying certain family conversations, as we have three friends named Mike. Predictably, various academics tried to defend the fucksaw show by appealing to “academic freedom” and “freedom of speech.” By Mike’s own admission, however, he’d put no more than five minutes of thought into the decision to allow this demonstration. For an act to be protected by academic freedom, it really should have arisen from actual academic thought. Allowing the fucksaw demo was just dumb, and I think Mike ultimately agreed, though as usual he would say it was a dumb choice only because the general public is so incredibly stupid about sex and, as usual, he’d have a point. The students in Mike’s class not only didn’t object to the demonstration (which they’d been allowed to skip if they wished); many actively defended him and the course to the media. Nevertheless, the Northwestern University administration responded to the kerfuffle by taking the course away from Bailey. It is now taught by someone more politically correct. (Not me.) Mike’s son Drew has finished his PhD and is now an assistant professor studying the evolution of sex differences.
What about Napoleon Chagnon? In 2010, the journal Human Nature peer-reviewed and published my findings about what the American Anthropological Association did to aid and abet Patrick Tierney in smearing Chagnon and James Neel, and in the cycle immediately following publication of my exposé, Chagnon was finally elected to the National Academy of Sciences. Shortly after that, he finally finished his decade-in-the-making memoir, publishing it under the title Noble Savages: My Life Among Two Dangerous Tribes—the Yanomamö and the Anthropologists. Emerging from the northern Michigan woods to return to academia, in 2012 Chagnon accepted a new professorship at the University of Missouri–Columbia (in Craig Palmer’s department). With the help of his colleague Ray Hames of the University of Nebraska, Chagnon is finally back at work processing the mountains of data he collected among the Yanomamö.
Several of the anthropologists I criticized in my work are still complaining that while I may have proved that Neel and Chagnon were wrongly accused of genocide, I haven’t adequately investigated Chagnon’s other putative ethical transgressions, such as allegedly manufacturing scenes for documentaries and cavorting with habitat-destroying gold miners. Were these charges coming from people who hadn’t first cried genocide, I might be more inclined to pursue them. As it is, the AAA has yet to apologize to Chagnon for what happened under its auspices. Chagnon used a lawyer I recommended to him to finally force the AAA to heed the vote of its membership and take down from its Web site the El Dorado Task Force Report, which included the claim that Chagnon had paid his Yanomamö subjects to murder each other.
Today, the Yanomamö are in dire straights. As recently reported in The Washington Post, “a new bill pending before Brazil’s Chamber of Deputies would proclaim a ‘public interest’ in allowing Indian reserves [like that on which the Yanomamö live] to be used for farming, mining, oil and gas pipelines, hydroelectric dams, human settlements and military operations.” This seems guaranteed to end their way of life.
It’s difficult for me to explain what has happened to the American Journal of Bioethics (AJOB), if only because I don’t employ a research team to help me keep up with the journal’s scandals. I guess I should relay at least the fact that Glenn McGee—the ethically challenged AJOB editor who remained unmoved by our calls for conflict-of-interest disclosures on the dex papers—ended up resigning from AJOB in early 2012 after some of his critics discovered that he had started working as an executive for a Texas stem-cell therapy company named Celltex. Celltex licensed the wares of a Korean stem-cell outfit called RNL Bio, a company McGee had been defending in the press a year earlier, after two of RNL’s stem-cell patients had mysteriously died. Many folks in bioethics didn’t think it all that funny that a stem-cell executive was now running a prominent medical ethics journal, especially because his company appeared to be running afoul of FDA regulations. Not long after McGee relinquished his editorship of AJOB, he also quit Celltex, which was soon under investigation by the FDA. Before he left AJOB, McGee saw his third wife, the bioethicist Summer Johnson McGee, installed as coeditor in chief of AJOB along with a friend of McGee’s.
Summer herself resigned just a few months later, on the heels of a Senate inquiry into a pain-medication scandal in which AJOB was implicated. The journal had published a couple of major pro-pain-medication articles without including information about the authors’ funding by the drugmakers whose wares they were advocating. (Yes, more undisclosed conflicts of interest.) Before Summer’s departure, AJOB had essentially been forced to publish one of the longest postpublication conflict-of-interest disclosures anybody had ever seen. I never could convince the remaining editor—the McGees’ friend David Magnus, a bioethicist at Stanford—to fix any of the problems with the dex papers. Robert “Skip” Nelson, the FDA official who ran the investigation on prenatal dex, still works as a paid ethicist for the FDA and as an AJOB editor in chief.
Dix Poppas, the Cornell medical school pediatric urological surgeon who was “sensory-testing” little girls’ genitals after he surgically “feminized” them, is apparently still doing these surgeries. After we made complaints, Cornell successfully argued to the Office for Human Research Protections (OHRP) that Poppas’s work should not be of concern to them because it was not federally funded and because he was supposedly doing the genital stimulation tests as part of “normal” medical care. (OHRP regulates federally funded research, not ordinary medical care.) In 2014, Poppas was voted one of New York Magazine’s Best Doctors.
As to prenatal dexamethasone, I still think it is highly likely that many of the pregnant women guided into the intervention by Maria New never really understood they were in a high-risk experiment. In the United States patients of physicians like Poppas and New—vulnerable people who are called “patients” while in the clinic and then used retrospectively as research subjects by the same physicians—seem to be caught in a never-never land in terms of rights and protections. Maria New is still on faculty at Mount Sinai School of Medicine and the Web site of the Maria New Children’s Hormone Foundation continues to advertise prenatal dex as “safe for mother and child.” New’s long run of NIH funding seems to have finally come to a permanent end in 2008, about a year and a half before we raised our concerns to the Feds. I don’t know why it ended. She has been pursuing a new form of prenatal testing that would allow earlier diagnosis of fetal sex, potentially making it possible to avoid exposing any males “accidentally” to prenatal dexamethasone. The doctor who blew the whistle on New’s Cornell NIH research in 2003 now works at the University of Minnesota. She and her lawyers were awarded $877,000 from a $4.4 million settlement paid by Cornell.
Studies of prenatal glucocorticoids like dexamethasone continue to cause great concern. One recent laboratory study showed that fetal ovaries (obtained from aborted fetuses) that are treated with dexamethasone suffer cell death, a finding that suggests that female fetuses exposed to dexamethasone for CAH may grow up to be women with fertility problems. How painfully ironic given that one of the goals of New et al.’s intervention has been to make the females more likely to be mothers. A recent study from Finland shows an association between prenatal glucocorticoid exposure for risk of premature birth and negative mental-health effects, suggesting that “even at low dosages,” glucocorticoids can have “a programming effect on the fetal brain.” The authors of this study note that animal studies have also been pointing to this possibility.
Conspiracy theories are always tempting—they make one feel both clever and important—but there is little reason to believe that the feds did so little on prenatal dexamethasone only because of Robert “Skip” Nelson’s ties to the AJOB gang. Thanks to the independent analysis of a dogged reporter named Theresa Defino, it’s now clear that dex was no special case. The Office for Human Research Protections simply is no longer doing its job. While legitimate complaints have been arriving to OHRP’s offices at a steady pace over the last several years, under the current directorship of Jerry Menikoff, OHRP has been opening fewer investigations, issuing fewer determination letters (findings of wrongdoing), and even lately backing off from enforcement requirements when researchers complain. According to Defino, “prior to 2009 [OHRP] typically had 20 open cases per year.” But under Menikoff’s leadership, in all of 2013, OHRP opened only one investigation. These days, OHRP seems to be much more about protection of research than protection of research subjects. (Several people who have recently quit OHRP have agreed with this reading when I have put it to them.) Regulations stand as they’ve been, but in practice, protections for people who become subjects of medical research may be at their weakest in decades.
I’ve now met quite a few researchers who, like me, stumbled on an ethical travesty they tried to stop, and like many of them, I wish I could let it go but feel that doing so would be irresponsible. I still have to remind myself regularly that the fact that we failed to get the federal government to act on dex doesn’t mean we failed. The work my colleagues and I have done has made it impossible for a physician or a family doing basic Internet research on prenatal dexamethasone for CAH not to find out that it is controversial and involves troubling risks and unknowns. Of course, one would rather such information were made available more directly, so I’m still writing to textbook and journal editors, asking them to correct misrepresentations of the intervention and presenting my findings to physicians at medical schools. I also continue to track the history of dex by all the means available to me, including FOIA.
When I found out that prenatal dex was being used on a hunch with the goal of miscarriage prevention by IVF doctors, I relayed the news to the women at DES Action, an activist group I had come to know via my dex work. Recall that DES had also been used with the aim of preventing miscarriage. The women at DES Action were as stunned as I. A leader in the group, Kari Christianson (herself a woman prenatally exposed to DES), responded: “Again and again, unproven and unsafe drugs are available, offered and given to pregnant women without fully informed consent or understanding at a most vulnerable time. It is unconscionable. To think that we have learned little or nothing in the over forty years since DES health harm was brought to light is frightening beyond all reason.”
The problem here is an old one: People don’t really get that good intentions can’t save you from hell. So long as we believe that bad acts are committed only by evil people and that good people do only good, we will fail to see, believe, or prevent these kinds of travesties. Nowadays I feel as though 90 percent of my time talking to academics and activists is spent trying to convince them of this: The people who are against you are not necessarily evil, and your own acts are not necessarily good. That’s why we still need both scholars and activists. It’s not easy to see what’s what in the heat of the moment, and we need people pushing for truth and for justice if we’re going to get both right.
But most people I run into aren’t like us historians. Most people I meet seem convinced that the goodness of their souls will keep them from committing bad acts. When they look back at history, they don’t see what we historians see—dumb tragedies. They see simple moral dramas, with predictable characters enacting easy stories of good and evil. They don’t understand that the Nazis probably didn’t think they were “Nazis.”
Everybody knows the most famous line about history—Santayana’s “Those who cannot remember the past are condemned to repeat it.” But if this project has taught me anything, it’s this: People don’t want to listen to us historians and our warnings. People don’t believe us when we come in at the start or the middle. They believe us only way after the end, if then. I’m learning to accept the fact that we are almost always too late. We can bear witness afterward, of course. And witnessing matters. But so many days, I find myself selfishly wishing that witnessing felt like enough.