Listen on Spotify: https://open.spotify.com/episode/7bmxO2s0F4LwmQoDbnwy7l
A scientist has not been burned at the stake in over 350 years – and even then it was Giordano Bruno, not Galileo. Find out how Professor Alice Dreger (PhD) become an advocate for survivors of intersex sexual reassignment surgery and she becomes a strong candidate to be burned in effigy by those for whom she was advocating.
This is a reposting of a book review from 2015, now included as a podcast (originally recorded on April 29, 2015 as a live, on air conversation with Alice Dreger, PhD, Professor of Medical Humanities, Northwestern Feinberg School of Medicine).
With transgender dynamics, identity, politics, and everything exploding in the headlines, the need for empathy around sexual identity and related issues is even more urgent and timely today than when originally broadcast.
Join me for a conversation with Alice Dreger about the conflict between scientific evidence and some interpretations of social justice and “empathy” (in quotation marks). Dreger starts out as a graduate student exploring the condition [previously] known as “hermaphroditism,” people born with sex organs that are ambiguous as to male or female, now called “intersex.”
In reading the text books studied by her medical student husband, she discovers the interventions performed to “normalize” people sexually into the two canonical categories of male or female. The parents usually follow the recommendations of the physician-surgeon who are articulating a supposed community standard that one’s genitals should unambiguously be either male or female. Dreger discovers that many of the people whose genitals were surgically transformed were subsequently lied to about their natal [birth] sex by well-intentioned doctors and well-intentioned parents following the well-intentioned doctor’s guidance. Thus, the road to hell. Find out what happens when Dreger’s research surfaces evidence that does not align perfectly with the interpretation of a social justice agenda.
This is a powerful and disturbing work. Dreger delivers a compelling narrative. A penis smaller than a person’s adult thumb or clitorises larger than one little finger, according to (some) conventional wisdom, have got to go. I am not making this up. The standard procedure was to surgically “delete” the offending member and surgically construct [some version of] the female genitals. This will, of course, resonate with Freudians everywhere as something motivated at the deepest levels of the unconscious. Not so Freudian is the proposition that if sex assignment from male to female and the raising of the infant as one rather than the other sex is the consequence, so be it. (Dreger is not interested in Freud in this text – that is my hobby.)
Dreger marshals evidence that people whose genitals are not surgically transformed as infants – but who have non-standard but otherwise healthy functioning genitals – are not worse off than those whose genitals were modified, and in many cases flourish. In at least one case, where the boy could not urinate standing up – and write his name in the snow with the stream of urine – due to the opening to the urethra being beneath the pen, the result of the surgery often produces a “cripple”. Yet the surgery continues to be performed. In other instance, the major concern expressed by the medical text books was that the child would become lesbian or gay. Ouch.
Dreger “goes to bat” for these intersex individuals, recovering their narratives out of medical records and journals where they had been documented as cases. She advocates for them. She lobbies, blogs, publishes in the popular press. Then the unintended consequences hit. Some of those for whom she is advocating don’t like some of the evidence Dreger publishes. It is not sufficiently “on point” about transgender issues being exclusively a function of a man’s brain born in a woman’s body or vice versa. The idea that a man could love himself as a woman and so want to become a woman does not compute.
As one might expect, research produces subtle nuances that require more than a sound byte or even a blog post. Suddenly Dreger finds herself the target of anger from the advocates for whom she was lobbying. It is not pretty. It gets ugly. Think self-righteous indignation as an expression of narcissistic rage and having one’s deeply felt values questioned by the evidence. There is no easy way to say it: some advocates of social justice seem to feel that the end justifies the means. The “means” include rampant forms of bullying and in-your-face confrontation, including charges of dubious ethical violations, invalid research, fictional claims about the researcher’s relations with his or her children and family, and the posting of toxic gossip on the Internet. The cause may be righteous, but the behavior is wicked and mischievous if not heinous.
Dreger survives and is vindicated. But then she begins to wonder if her experience of the collision of scientific evidence with advocacy and versions of its conventional wisdom was exceptional. Like most survivors she asks: “Is it just me?” It is not. It reminds her of the conflict between Galileo and the sedimented beliefs of the Church of his time.
A point that underlies Dreger’s work and may usefully be made more explicit: The facts of empirical science are fragile. Not only can they be shouted down by bullies, purged by tyrants such the Italian Inquisition of the 16th century, or simply ignored by the average person, the facts can also be set upon by academic, university, or institutional agendas more dedicated to building a corporate brand – and being financially well funded – than attaining an evidence-based version of the truth.
(An early version of this thesis, perhaps unknown to Dreger, is Hannah Arendt’s work on Truth and Politics. Not a historian of medicine but of political theory, Arendt makes the powerful point that if all versions of Euclid’s Geometry had been destroyed, mathematicians would still be able to recreate formal geometry out of the a priori forms of space and time; but if Stalin had really succeeded in purging all examples that such a person as Leon Trotsky had existed, then we really never would have heard of such an individual’s factual existence. Facts are fragile. )
Enter a young (male) scholar who has a strong hunch he can prove an exception to the rule. No, sometimes rape is motivated by sex. Sometimes a guy, who has no prospect that the intended woman would have sex with him (but who he desires sexually) decides to use force. This naïve academic sees a dissertation topic that is a cut above the usual scholarly drivel. A dissertation is delivered to that effect. Not only does all hell break loose – he is silenced by angry activists – but it gets worse. The phone rings. It is a prosecuting attorney needing help with a case.
The District Attorney is bringing charges against a perpetrator, an alleged rapist standing trial for his crime. The defense is arguing effectively that science has shown that rape is about power, not sex. The perpetrator could not possibly have been motivated to the crime by sex. Science says so. Wait a minute. Rape is never about sex? It is now a defense against rape that there was no other motive than sex?
Since 1975 we have seen date rape and the use of incapacitating “date rape drugs” such as anesthetics facilitate the violation. Surely advocates and scientists can encompass the possibility that sometimes rape is about power, sometimes it is about sex, and sometimes, it is both (p. 125). Don’t be too sure. There is a deep lesson about human nature here. Constant dialogue is needed to keep people in rational communication without distortion and manipulation. The desire to be righteous and justified is pervasive and extends across all political spectrums. The ability to listen has rarely been in such short supply.
Another case. Napoleon Chagnon writes an innovative and disruptive work of anthropology (Yanomamö: The Fierce People). He argues that Margaret Mead’s vision of a peaceful coming of age in Samoa in a sexually liberated version of a hippie-like commune may not be the only paradigm of the life of native indigenous peoples. (Mead herself was subjected to a debunking, the factual basis of which turned out to be, shall we say, less than rock solid.) The Yanomamö in South America are more like warring bands of Hobbes’ “war of all against all” or the tribes of the Peloponnesian peninsula, with Achilles throwing a narcissistic fit – “I stole her fair and square” – because Agamemnon took his plundered woman.
Chagnon is a virtual Dreyfus Affair in the American Association of Anthropologists. Alfred Dreyfus (you may recall) was stripped of his epaulets, his campaign badges ripped off his chest, and he was banished to Devil’s Island (my metaphor, not Dreger’s). Years later, Chagnon is vindicated (as was Dreyfus) and “rehabilitated.” But only after years of upset, suffering, and the monumental expense of mounting a defense against false accusations as recounted in his My Life Among Two Dangerous Tribes – the Yanomamö and the Anthropologists. The bottom line? According to Dreger, in addition to the political infighting, wicked and mischievous gossip, and an alleged series of narcissistic injuries unintentionally committed by Chagnon against colleagues, it was politically inexpedient to represent indigenous peoples as warlike.
Dreger documents in detail the appalling political intrigues, plots misfired and rebounding onto the heads of the perpetrators, and the narrow mindedness of academics who ought to have adhered to scientific standards rather than tit-for-tat gamesmanship. Dreger’s work is definitely a page turner, reading like a spy novel or an account out of Kafka’s The Trial. Speaking personally, it made me paranoid at points. I felt discouraged at the alternating narcissistic rage and petty retaliation enacted for real or imagined slights to which both scientists and advocates for social justice seem all-too-prone.
The drama goes on. It escalates. Maria New, MD, is a celebrity woman’s doctor of long service and, at least initially, significant distinction. Dr New advocates that early stage pregnant women take dexamethasone (off-label, though FDA approved to prevent miscarriage) when the parental profile shows a one in eight chance that the female fetus may have congenital adrenal hyperplasic (CAH)). Basically CAH means that the baby might be a “boyish girl” if left untreated. Heavens to mergatroid – a lesbian? But since there were never any controlled studies of the consequences of taking dexamethasone (dex), it is not clear if the cognitive impairment, the deformed genitals, other anomalies, were due to the action of the drug or whether the drug was simply ineffective for its off-label use.
Dreger believes she has an “open and shut” case of an ethical violation that research subjects were not informed that they were participating in what amounts to a experiment, a far cry from a “safe and effective” treatment. The FDA oversight representative embedded in the research teams raises a number of red flags. Her career is ended on a pretext, and Dr New transitions to a different university without so much as a warning in any file.
One thing is for sure. Taking the case to the FDA and the Office of Human Research Protection (OHRP) reveals a level of indifference, human clumsiness, and subtle, unexamined conflicts of interest and self-dealing that again approach’s Kafka’s The Trial. Appalling. By the way, if ones want to receive this treatment during early stage pregnancy with the hope of dialing down the masculinization of the fetus, it is still legally available from Dr New and her associates, though Dreger has made it her project to dominate the Google listings with warnings about the risks of the treatment.
Dreger’s point is that the use of dex to influence the process of masculization of the fetus is experimental as used off label (the “on label” use is not to treat CAH, but to prevent miscarriage, for which it seems to be effective). The women to whom it was given to treat CAH were never told and never signed an informed consent form to participate in what was basically an experimental use of the drug. “Safe and effective” remains unproven for CAH, and evidence to the contrary is emerging. However, what really put the kabash on the treatment with dex is that it has been branded an anti-Lesbian drug. More good news. It is not as bad as thalidomide; but possibly another DES fiasco in the making.
In conclusion, Dreger offers reflections inspired by the Founding Fathers of the early days of the United States and such politician-statesmen as Benjamin Franklin. No stranger to risk, Franklin was both flying a kite in a thunderstorm and building a structure of government capable of correcting its own errors (not on the same day). Thanks to such men, we are all better off than Galileo when speaking truth to power. Free scientific inquiry needs a free social and fair political space to flourish. Justice requires access to accurate facts and a way of testing evidence that distinguishes fact from fiction The truth is vulnerable to the influences and distortions of the social organization of power.
Granted that a scientist has not been burned at the stake for over 500 years, that is no reason for complacency. I could not help but think that Professor Dreger was well on the way to being a candidate, though admittedly the burning was “in effigy.” Bad enough! There have been many ruined careers and damaged lives due to bullying and political abuses. Dreger bemoans the “push down” of the press and investigative journalism – in short, the decline of the press beneath the pressures of a publishing market in distress, the Google-ad-industrial-complex, and on the Internet no one knows you are a dog. While the Internet is a multi-edged sword and sends fear into the hearts of tyrants everywhere, it is easy to abuse. It is a dubious format for rational discourse and evidence-based anything. That should not stop one from posting her or his peer-reviewed research (this is not an example of that) but it means one must also mount the soap-box on a regular basis and speak truth to power.
[Note: the podcast is a rebroadcast of a conversation with Alice Dreger on her book and does not map word-for-word to this blog post, and the post and podcast may be enjoyed separately]
Alice Dreger. (2015). Galileo’s Middle Finger: Heretics, Activists, and the Search for Justice in Science. New York: Penguin.
(c) Lou Agosta, PhD and the Chicago Empathy Project