“3” in “Curiosity Studies”
3
Curiosity, Ethics, and the Medical Management of Intersex Anatomies
Ellen K. Feder
All human beings by nature desire to know.
—Aristotle, Metaphysics
It’s easy to take for granted the desire for knowledge, what Aristotle saw as a fundamental part of human life. Awakened, as Descartes wrote, by “wonder,” the first of the passions of the soul,1 curiosity is celebrated as central to children’s learning and character development. Curiosity is valued across the lifespan, institutionalized in the most esteemed centers of learning and investigation. But this curiosity, associated with the expansion of understanding and ethical sensitivity, has another side. In the psychoanalytic terms of Melanie Klein, the “epistemophilic impulse” is linked from the start with an obverse “sadism.”2 In the frustration of the desire for knowledge and the pleasure that wonder brings there lies a destructive potential. Klein’s observation about the positive and negative expressions of epistemophilia provides a helpful starting place from which to consider very different expressions of curiosity we find in the history of the medical management of intersex anatomies.
Intersex anatomies are neither clearly male nor female and so challenge conceptions of sex difference as simply or unassailably dimorphic. The destructive effects of a negative or objectifying curiosity are readily apparent in the narratives that have been produced over the last twenty-five years by adults who, as infants, young children, or teens, experienced “corrective” genital surgeries and other unnecessary normalizing interventions. The positive sort of curiosity Aristotle identified as the beginning of philosophy may not be apparent in these narratives, describing, as they do, the impact of decisions made by physicians certain of the need to change intersex anatomies and confident in the therapeutic promise of their treatment. Each narrative constitutes an invitation to be curious about the experience of those who have been subjected to practices that physicians have promoted—without evidence of “success”—for more than five decades.
Examining the medicalization of intersex bodies and the resistance it produced through the lens of curiosity has led many to look at the history of psychologist John Money’s role in the development of the protocol that became the “standard of care.” Indeed, the damning history of Money’s role has been a keen object of study in the critical literature concerning the medical management of intersex since the birth of intersex activism in 1993. Focusing particularly on the curiosity that appears to have animated Money’s inquiries into intersex bodies and lives may enrich our understanding of and appreciation for the moral violation that has seen increasing recognition. It may also present some surprises that challenge settled beliefs. If we find that criticism of Money’s role has neglected positive aspects of his work that exemplify the best qualities of curiosity, we may better appreciate the reverberating consequences of a refusal to be curious. I want to be clear that my aim is not to excuse Money’s actions. We must not minimize the harm to which his work has contributed and that persists after his death. Rather, I propose to follow the hunch that the more complicated picture of Money that closer examination reveals may offer insight into the promise of curiosity awakened on the one hand and the perilous risks of its suppression on the other.
Subjects of Curiosity
When I began to consider the place of curiosity in the context of the medicalization of intersex, what came immediately to mind was image after image of medical students and residents gathered around an infant, child, or adolescent in a hospital room or surgical theater. When aspiring and new physicians are led—“paraded,” as a number of individuals have put it3—through rounds to inspect atypical sex anatomies, their supervisors do not intend for physicians-in-training to be surprised in the ways that Descartes identifies with the passion of wonder. Medicine is not, or at least not at this moment, creative, wonder-filled, scientific inquiry, but what we might see as a highly skilled trade, one that puts a high premium, furthermore, on “dispassion” in practitioners. And yet physicians are interested in seeing intersex anatomies, or other sorts of unusual anatomies, precisely because they are not common; they are, in other words, “objects of curiosity.” Wonder may be prompted by an encounter with what is unexpected or simply experienced for the first time, but wonder comes from “noticing” rarity. Having already taken note of the rarity of intersex anatomies, medicine is no longer caught up in the wonder that feeds curiosity but in the sort of investigation and understanding whose aim is building knowledge.
Narratives by intersex individuals—those that inaugurated an activist movement of resistance,4 and continue to appear in print5 and online,6 attest to the harms of being the objects of “a kind of prurient curiosity,” as Iris Marion Young put it, “that convert[s] the openness of wonder into a dominative desire to know.”7 Individuals’ accounts of their experience as patients emphasize the effects of their subjection to a medical gaze that has made curiosities of their bodies. In the clinic and surgical theater, their anatomies are exposed to examination; in the lab, blood and saliva are magnified to explain the bodies’ secrets. But such examination, one might reasonably observe, is the work of clinical medicine and research that aims to improve care for patients.
What appears to distinguish the medical management of intersex, however, is the startling lack of curiosity specialists in the standard of care for intersex anatomies have demonstrated in response to stories of individuals who have spoken up about their experiences. Far from the “success stories” that multiple case studies in the medical literature represented, intersex individuals—among them the very patients depicted in the literature8—have conveyed how medical interventions have damaged their bodies and spirits. Individuals report chronic pain or dysfunction resulting from unnecessary surgeries to remove or reshape genitals that didn’t conform to standards for assigned gender. Loss of reproductive function following gonadectomy was seen as critical to the successful sex assignment of some; in others, being a suitable woman justified clitorectomy. Many speak of trauma resulting from having their medical histories concealed from them, or because they recall too clearly the experience of clinical examinations intended to educate medical students and residents. As one former patient wrote, “I still struggle to understand how it can be that medical professionals who seemed so interested in my care could have been so unaware of how their treatment had hurt me.”9 Wouldn’t physicians want to know about the outcomes of treatment they have recommended or themselves administered?
Painful and consistent, these stories are also, perhaps especially for those who encounter them for the first time, surprising. First there is the “fact” of intersex, the recognition that there are bodies that fall outside the norm of sexual difference. We learn then of the harms entailed by the medical management of these bodies. These are not only physical harms, which are substantial, but also psychological harms that originate in the secrecy and silence—and often outright deception, both of children and their parents—that has characterized the treatment of intersex bodies since the 1950s. Surprising, too, are the repeated opportunities and attendant failures by physicians and parents to recognize the wrong of these practices in the face of these testimonies and now, in the increasing number of international statements condemning them.10 Indeed, that there has appeared to be no reduction in these practices worldwide in the face of these statements is itself cause for wonder: How can it be that a practice can at once appear wrong to so many, and yet necessary (and so, a right or “good” action) for others, and especially for the physicians and parents responsible for the well-being of children in their care?
Perhaps more vexing still is the question of how physicians have remained confident in the standard of care even as they failed to engage in follow-up studies of their work.11 If information concerning how patients have fared over the long-term is inadequate, how could they provide assurances to anxious parents who had been informed that their children’s futures depended on surgical or hormonal intervention?
Investigation—or the lack of investigation—of outcomes has been among the thorniest of problems for supporters of the standard of care. When questions about the lack of evidence of putative success of normalizing interventions were first raised in the mid-1990s, specialists balked: It wasn’t clear, after all, how much patients knew about their diagnoses or the surgeries or treatments they had undergone.12 Even the parents who had consented to procedures might not be fully aware of the details of surgeries that had taken place in the 1960s and 1970s. Daunting ethical problems in conducting outcomes research came to present apparently insurmountable barriers even for physicians who recognized the benefit of robust follow-up, even if only to substantiate their convictions that “their” patients would be counted among the “happy silent majority”; surely the positive results they could demonstrate should discredit the “unhappy vocal minority” whose stories were raising doubts about the standard of care. Despite the absence of evidence supporting the standard of care, most physicians have continued as they have, apparently relying on the rationale for normalizing interventions formalized at Johns Hopkins University in the mid-1950s by psychologist John Money and his mentors, Joan and John Hampson. While there have been some changes in the standard of care beginning at the turn of the twenty-first century (most notably regarding the routine reassignment of male children with micropenises to female),13 proponents of cosmetic surgical intervention remain committed to resisting efforts—ethical, political, and legal—to alter the standard of care.14
The Origins of the Standard of Care
I am hardly alone in the confusion I have experienced in the face of the abiding confidence specialists demonstrate with respect to the importance of ensuring that the anatomies of children match their sex of assignment. After all, the validity of the standard of care would seem to have been seriously undermined, if not destroyed, following the 1997 revelation of Money’s prolonged deception regarding what was reported to have been the successful sex reassignment of an identical twin (known as “the case of John/Joan”).15 Certainly I was curious about the motivation of those specialists whose commitment to the standard of care appeared unchanged in the years following Money’s marginalization in medical discussions of care for children with atypical sex anatomies. But, in reflecting on the subject of curiosity, I realized that I had not been curious about John Money.
On the one hand, that lack of curiosity isn’t especially surprising. He makes an excellent villain, as has been demonstrated in the book that journalist John Colapinto wrote after publishing the breaking story in Rolling Stone. Colapinto described how “Joan” (Brenda Reimer) had been living for some time as a man, now called David, who had married and was raising two children. A few years later, there was the BBC documentary, Dr. Money and the Boy with No Penis that described David Reimer’s suicide. His death, the narrator intones:
was more than just a human tragedy. It was also a devastating blow to the reputation of the psychologist whose groundbreaking research on David had influenced a whole generation of scientists. Because some say that it was his unflinching belief in his theories that may have ultimately led to David’s death.16
It doesn’t seem quite right to claim that it was Money’s “belief” in his theories that resulted in the death of David Reimer. The story that garnered Money so much renown (including a story in Time magazine) seems more like a function of a hunger for recognition so deep as to overwhelm other, also human needs, such as the ethical “pull” to tell the truth.
The demonization of Money satisfies the narrative arc of the tragic story of David Reimer and his family, as well as the stories of so many who have been affected by the medical management of atypical sex anatomies. My own discussions of Money’s work have not been particularly nuanced with respect to his role in formalizing the medical approach to managing atypical sex anatomies in children. I have highlighted the apparent contradiction between the rationale for these protocols—which promote surgery to ensure psychosexual health—and his conclusions based on the study of 10 individuals and 238 case histories presented in his doctoral dissertation. One might suppose that “the paradox of hermaphroditism” in these 248 cases would create, he wrote,
a fertile source of psychosis and neurosis. The evidence, however, shows that the incidence of the so-called functional psychoses in the most ambisexual of the hermaphrodites—those who could not help but be aware that they were sexually equivocal—was extraordinarily low.17
Where Colapinto and many following him see in this passage and the contradictions it reveals a culpable hypocrisy, Alison Redick’s study of the development of the Johns Hopkins protocols and especially of Money’s role, provides another view. She argues that the evidence Money gathered in his dissertation research did not upset his own suppositions about what has been figured as Money’s focus on the imperative to make intersex bodies conform to a social order organized by a rigid division of sex. Rather, the individuals with intersex who might appear to be the subject of his research were for Money a means of finally settling debates about sexual difference; rearing, he claimed, “trumped all” other influences, including the activity of hormones. The fact that the majority of “hermaphrodites” who had not been subject to surgical intervention accepted their gender assignments without psychological disturbance provided ample evidence for this conclusion.
Money’s theoretical analysis appears from Redick’s reading to have more sophistication than it did when subsequently presented—including by Money himself—and taken up by specialists in the care of children with atypical sex anatomies. In his earliest work, Money’s research posed a challenge to the mind/body dualism that shaped motivation theory and behavior.18 His conviction that “human psychology would always assume either a masculine or feminine gender orientation” was neither a matter of “biology” nor of “society” but was a product of a multipart feedback system beginning in utero19 and continuing through early childhood.20 This was true not only in the case of the majority of individuals who accepted their gender assignment but also, Money argued, in the cases of the forty-one individuals he documents (forty of whom had initially been assigned female) who failed to accept their assignment “despite the amputation of their phalluses in many cases.”21 Second, Money’s work aimed to challenge the view of prevailing psychoanalytic theory locating psychological disturbance in psychosexual aberration, specifically in homosexual orientation.22
If psychopathology and sex difference figured importantly in Money’s dissertation, it was not because he was interested in shaping medical practice as he would shortly come to do; at this stage, Money’s dissertation may be viewed principally as a theoretical work notable for the radically new understanding of “gender” introduced there, and elaborated in his better-known published works. Hermaphroditism lies at the center of this work because “hermaphrodites,” as he wrote in 1952, “provide invaluable material for the comparative study of bodily form and physiology, rearing, and psychosexual orientation.”23
Indeed, it was this theoretical rationale that Lawson Wilkins, the “father” of pediatric endocrinology, sought in Money and his mentors, Joan and John Hampson, when he offered Money a fellowship at Johns Hopkins. Wilkins had become acquainted with Money as he was completing his dissertation. Some of Money’s cases, in fact, had come from Wilkins’s clinic, where Wilkins had, only the year before Money’s arrival in 1951, confirmed and was then refining the lifesaving use of cortisol for the treatment of salt-losing congenital adrenal hyperplasia, the most common condition resulting in atypical sex anatomies in genetic females.24 At Johns Hopkins, Money appears no longer to have been involved in the initial investigation and testing of theories but was instead engaged in the formalization and defense of a theoretical framework. He turned, in other words, from a project that now strikes me as characterized by curiosity in the positive sense—namely, in asking new questions in the face of surprising phenomena—and came to occupy a role at Johns Hopkins where his function was to consolidate and advance a theoretical framework in the service of developing the new field of pediatric endocrinology at a leading medical institution.
Investigating John Money
I was initially moved to question the soundness of my previous reflections on Money and his legacy after reading a narrative prepared by “Peggy Cadet,” which complicates the picture of Money I had formed. Now a middle-aged woman, Cadet had initially been raised as a boy, but had struggled with that assignment throughout her childhood and young adulthood. She recalls that when she was around twenty-one, she gained access to the medical record of a younger cousin, then twelve years old, with whom she shared an intersex condition. The record contained “the verbatim transcript” of her cousin’s interview with Money who, Cadet writes, offered sympathetic advice, and explained clearly and frankly to her cousin that he had choices: “Money not only told my cousin that he could change to being a girl instead of having a mastectomy, he gave him explicit information about intercourse, erotic sensation, homosexuality, transsexualism . . . all presented in language geared to a 12 year old’s understanding.”25 These were choices that had never been presented to Cadet. “Ironically,” she writes, “the counselor I was seeing at that time cited Money’s ideas as the rationale for my not having been informed in the same way as a child.” Though Money has been “vilified for promoting a policy of secrecy and non–disclosure for intersexed patients . . . in the case of my cousin, it appeared that he actually provided the sort of information and education intersex activists have argued for.”26
Cadet’s narrative finds significant confirmation in the memories of Tiger Devore, one of the very first intersex activists and a clinical psychologist who sought a fellowship with Money as Devore was completing his PhD in psychology. Despite enduring nearly annual surgeries for “hypospadias repair”27 throughout his childhood and young adulthood, Devore had never met anyone who shared his experiences. He saw the prospect of that changing when, as a graduate student, he attended a lecture at UCLA by psychologist Robert Stoller. Having encountered the diagnostic term hypospadias only in his own medical records, Devore describes what seemed like a kind of thrill on seeing, projected on the screen, his diagnosis, along with others describing different conditions that were not yet known—at least outside of the halls of the clinic—by the term “intersex.” The promise of learning about others like himself who had been born with sex anatomies judged in need of “correction” led him to ask for Stoller’s help in recommending him for a position in Money’s clinic.
Devore’s account provides a view of Money that helps us join together some of the stray pieces in what is emerging as the larger, more complicated puzzle that is John Money, his work, and his legacy. “He really cared about his patients,” Devore recounts. “He connected with them and met them without judgment.” Well aware of the harm that Money’s work has done—and open about his deep disagreements with Money, both during his fellowship and long since, Devore recalls the compassion Money displayed toward his patients. By his account, the empathic concern Money demonstrated was a product of his genuinely nonjudgmental curiosity about the lives of many of those who came to the clinic, whose bodies or desires were taken at that time to be “pathological.” Like Cadet, Devore also recalls Money’s efforts to help his patients make adjustments that could provide them the space to express their desires and more safely make their way in the world.
Money extended a warm welcome to his trainee, who made clear in his communications not only his qualifications to work at Johns Hopkins but his specific motivation for seeking a position in Money’s clinic. Devore reports that Money was openly enthusiastic about having someone with an intersex condition as a clinical intern. Perhaps not surprisingly, Money saw in Devore an opportunity to extend his own renown. Money arranged for Devore to be featured with him on a 1984 Baltimore talk show—they were interviewed by Oprah Winfrey on “People Are Talking”—which Money heralded as the first television appearance by an intersex person speaking about their identity and experience. At the same time that Money sought to capitalize on his student’s willingness to make public appearances and so, we may speculate, imply Devore’s endorsement of Money’s work at Johns Hopkins, Money also took seriously his responsibility as a supervisor, encouraging in Devore the curiosity that appears to have characterized Money’s early research, and that, according to Devore, was so evident in his clinical work with older teenagers and adults. This curiosity extended both to the clinic’s patients and to Devore himself.
Devore’s reflections on what he saw of Money’s clinical work provide a better sense of why many of Money’s students and junior colleagues were so devoted to him during his life and remain eager to defend his work after his death. In what is at least partly an effort to reckon with the uneasy legacy of Money’s aspiration to create “a comprehensive map of sex, gender, and sexuality,” the editors and coauthors of Fuckology: Critical Essays on John Money’s Diagnostic Concepts observe the strident defense of Money mounted by former students and collaborators.28 Among them is Anke Erhardt, who emphasized in a heartfelt obituary Money’s wide-ranging contributions: He was a founding member of the new field of psychoendocrinology, responsible for important changes to the treatment of variations in anatomy and desires. It was Money who popularized the term “paraphilias” to replace the pejorative “perversions,” and introduced “sexual orientation” to replace “sexual preference.” This change was crucial for Money, according to Erhardt, “because our attractions are not completely voluntary nor simply matters of free choice or taste.”29 Erhardt was at pains to highlight the contributions that Money had made to the lives and self-conceptions of those who would become his harshest critics.
Erhardt was not alone. A few years before Money’s death, Money’s colleague Vern Bullough had similarly characterized Money as “one of the great pioneers of American sexology.”30 Bullough laments especially the way that the Joan/John case had been represented and received. Attempting to reduce the unfortunate “blot on his career” left by the public revelation of David Reimer’s rejection of his assignment (Reimer’s suicide occurred the year after Bullough’s “Contributions”), Bullough suggests that Money’s critics have been unfair or even disingenuous in their condemnation, pointing readers to Money and Erhardt’s caution that successful reassignment is contingent on the “clear and unambiguous signals about the new identity” parents in particular must convey to a child born with atypical sex.31 Interestingly, Bullough implicates not only David Reimer’s parents for supposedly undermining the treatment designed to help him adjust to life without a penis but also suggests, as Peggy Cadet suspected, that specialists in the care of children with intersex conditions have themselves failed to heed Money’s cautions, simplifying and thus distorting Money’s recommendations in ways that do not accurately reflect the subtlety and complexity of the protocols he promoted.32 It is not Money who is to blame, Bullough suggests, for the criticisms made by the Intersex Society of North America (to which Bullough appears somewhat sympathetic); rather, Money appears to be a kind of straw man or scapegoat in a set of widespread and frustrated demands to resolve the mysterious challenges posed by biology and society to which, Bullough tells us, “there is no easy answer.”33 The “real” John Money, both Bullough and Erhardt insist, was a deeply curious, even courageous student of the human embodied condition, one who contributed to a radical rethinking of assumptions about gender and sexuality.
In his characterization of Money’s work, Bullough rightly emphasizes the significant social, psychological, and legal challenges posed by discomfort with or intolerance of variations in sexual anatomies, identities, and desires that are taken to be outside a rigid norm, and the serious personal risks assumed—voluntarily or otherwise—by those individuals whose identities and desires fall outside this standard. In her tribute, Erhardt emphasizes how Money’s “deep empathy and passionate caring for patients with anomalies of their sex organs, their sexuality, and their gender remained a haven for many people for decades. Many felt that he was unique in his understanding, expertise, and knowledge, and tolerance and counseling.”34 While Bullough is rather forthright about Money’s personal shortcomings, calling attention to his occasional displays of obstinacy and even arrogance,35 both Bullough and Erhardt aim to defend their teacher, colleague, and friend, and decry the misrepresentation of Money’s work and the marring of his legacy that both hope will be eventually redeemed. Erhardt recounts how, in the last years of his life, Money was “deeply affected” by the “attacks” he had suffered to his reputation:
I tried to reassure him that he would share the fate of many truly pioneering giants in science, namely, that we were experiencing a swinging of the pendulum that ultimately would swing back and that his work would find the proper place in history. Indeed, the pendulum has started to swing back to give John Money the proper credit for his extraordinary contribution to the field of psychoendocrinology and sex research.36
Erhardt’s promise that his contributions would, in time, receive proper recognition may have seemed far-fetched before his death. However, the critical essays in Fuckology provide some hope for the redemption Money and his supporters believe is his due. The volume’s title may strike a reader as disparaging of Money’s work. But Money himself coined the term to name the field of inquiry in which he placed his work. Eventually called sexology (of which psychoendocrinology, another neologism, would be a part), this new field combined a number of existing medical and psychological areas, but would also work to challenge societal taboos.37
The slow and difficult work of challenging social taboos that have damaged the spirits of those whose desires or anatomies do not fit the norm seems an unassailable good that requires the sort of curiosity that Money appears to have demonstrated in the clinic. But the legacy of deception that Money left cannot be so readily dismissed as those of other pioneers of science and the human condition to which Erhardt may believe Money should be compared.38
When I asked him how it could be that Money appeared to have two faces, Devore responded without hesitation that the tension between the sort of open curiosity Money demonstrated toward his older teen and adult patients and the stubborn defense of his academic work came from “the institution.” Devore takes his teacher’s aspiration to create a comprehensive, “Linnean” taxonomy39 of sex, gender, and desire as a means with which he would “find distinction.” Recognition of the sort Money sought—to be “the first,” “the best,” “the most influential”—required not only the shaping of a classificatory/theoretical apparatus but clinical evidence, and so “proof” of its success.
At an institution that prided itself on being world-class, professional respect and renown were valued above all else. Reflecting on his experience with Money at Johns Hopkins University, Devore credits his teacher with providing both a model for the compassionate clinician Devore has proved to be over the last two decades and a cautionary tale that made the practice of academic psychology, which demands the blurring of lines between research subjects and patients, unappealing to him.
From Devore’s account, perhaps we may affirm that Money did, indeed, exhibit an admirable curiosity, a generous and compassionate curiosity, which provided Devore and Money’s patients a “haven” in a world too fearful or threatened to tolerate or support their bodily and affectional deviation from some fantasied norm. But that same curiosity served also to elicit the details that would help Money to lay out what he believed would prove a master design of human identity and desire that, at this sociohistorical moment, insisted on surgically creating “normal” bodies from “abnormal” ones. Money and a growing body of specialists, whose initial members were trained at Johns Hopkins, applied the protocols he helped to formalize and shaped the standard of care not only in the United States but throughout the West. Intersex patients, then, were both radically affirmed and tragically damaged by Money’s work, which contained both genuine curiosity and powerful drives to normalization.
That Money’s name and theory no longer appear in defense of contemporary practice should itself occasion wonder. There is ample evidence of his role in the history of harms resulting from the formalization of the protocols practiced at Johns Hopkins under the guidance of Lawson Wilkins, and then in the work of his protégés, many of whom remain leaders in the field today. And yet, invocation of Money’s work may now be deployed to distinguish past practices from the present. Changes resulting from the “dramatic failures”40 of the optimal gender approach, so publicly on display in the case of John/Joan and privately manifest in the experience of many former patients and their physicians41 in routine reassignments of male children with micropenises, have been offered as an implicit defense of present practices. Few physicians openly defend the standard of care today, and ethical defenses have been and remain thin. Today any open justification focuses on “parental rights”—informed, presumably, by medical guidance—to make decisions on behalf of children,42 rather than the health and well-being of the patient. Why, we must ask, would physicians who had understood the harm of these interventions in the past resist recognition of the harm that continues? What does that resistance serve? Perhaps an answer lies in the risks, both to one’s professional position and to one’s self-respect, that Money himself may well have seen in the potential revelation of the truth of his most famous patient.
Curiosity’s End
The institutional recognition John Money sought comes not from what Aristotle called “the desire for knowledge” but from the belief that knowledge has been finally attained. What is celebrated, and rewarded, in such institutional recognition is not a spirit of inquiry, but its conclusion. Reflecting on the value assigned to this achievement, we may recognize another dimension of the ethical violation entailed by the standard of care, and the end of curiosity it seems to promise—namely, the crushing silence experienced by many individuals subjected to the standard of care. This silence was not simply a refusal to or proscription against talking about a child’s physical difference but also a stifling of a desire to know. The standard of care was designed expressly and intentionally to foreclose questions not only about a child’s unusual anatomy, or what that might mean about that child’s desires, but also about the very fact of intersex. But if this intention was shaped by a paternalistic effort to prevent discomfort or doubt in the child, and perhaps especially in the child’s parents, these interventions also had the effect of stifling a curiosity about oneself and one’s world that is at the heart of wonder.
If there is a positive lesson to take from Money’s work, it lies in the creative and life-affirming value in the curiosity that could be both welcomed and encouraged in teens like Peggy Cadet’s cousin and adults like Tiger Devore. Understanding how curiosity’s stifling can so brutally encumber the prospects for a well-lived life, Devore would go on to build a life’s work in its encouragement, supporting and fostering a movement of individuals who would find, in the reclamation of curiosity, a righteous anger and new prospects for the wonder, the desire, and the delight that the revelation of injustice may bring.
Notes
Perry Zurn and Arjun Shankar’s invitation to participate in the “Curiosity across the Disciplines” symposium sparked my thinking about curiosity, and I am grateful for the thoughtful comments and criticisms they have provided since the event. Special thanks to Jameson Garland, Alice Dreger, Eileen Findlay, and Andrea Tschemplik for their careful readings and suggestions.
Marguerite La Caze, Wonder and Generosity: Their Role in Ethics and Politics (Albany: State University of New York Press, 2013), 13.
Melanie Klein, “Early Stages of the Oedipus Complex,” in Love, Guilt and Reparation and Other Works, 1921–1945 (1928; New York: Free Press, 1975), 187–88.
Konrad Blair, “When Doctors Get It Wrong,” Narrative Inquiry in Bioethics 5, no. 2 (2015): 89–92; Laura Inter, “Finding My Compass,” Narrative Inquiry in Bioethics 5, no. 2 (2015): 95–98; Lynnell Stephani Long, “Still I Rise,” Narrative Inquiry in Bioethics 5, no. 2 (2015): 100–103.
Cheryl Chase and Martha Coventry, eds., “Intersex Awakening,” special issue of Chrysalis: The Journal of Transgressive Identities 2, no. 5 (1997); Alice Domurat Dreger, ed., Ethics in the Age of Intersex (Hagerstown, Ms.: University Publishing Group, 1999).
See, for example, Tiffany Jones et al., Intersex: Stories and Statistics from Australia (London: Open Book, 2016); Georgiann Davis and Ellen K. Feder, eds., “Intersex” Narrative Symposium, Narrative Inquiry in Bioethics 5, no. 2 (2015): 87–150.
See, for example, Jim Ambrose, The Interface Project: Stories of People Born with Intersex Traits (2012), https://www.interfaceproject.org/stories.
Iris Marion Young, Intersecting Voices: Dilemmas of Gender, Political Philosophy, and Policy (Princeton, N.J.: Princeton University Press, 1997), 56.
See, for example, Karen A. Walsh, “‘Normalizing’ Intersex Didn’t Feel Normal or Honest to Me,” Narrative Inquiry in Bioethics 5, no. 2 (2015): 119–22.
Blair, “When Doctors Get It Wrong,” 7.
See, for example, Human Rights Watch, “‘I Want to Be Like Nature Made Me’: Medically Unnecessary Surgeries on Intersex Children in the U.S.,” July 25, 2017, https://www.hrw.org/report/2017/07/25/i-want-be-nature-made-me/medically-unnecessary-surgeries-intersex-children-us; Parliamentary Assembly of the Council of Europe, “Promoting the Human Rights of and Eliminating Discrimination against Intersex People,” (2017), Resolution 2191, http://assembly.coe.int/nw/xml/XRef/Xref-XML2HTML-en.asp?fileid=24232&lang=en; European Union Agency for Fundamental Rights, “The Fundamental Rights Situation of Intersex People,” April 2015, http://fra.europa.eu/en/publication/2015/fundamental-rights-situation-intersex-people; United Nations Human Rights Council, “Report of the Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, Juan E. Méndez” (2013), A/HRC/22/53.
Sarah M. Creighton et al., “Childhood Surgery for Ambiguous Genitalia: Glimpses of Practice Changes or More of the Same?” Psychology and Sexuality 5, no. 1 (2014): 36, 38; Lih-Mei Liao, Dan Wood, and Sarah M. Creighton, “Parental Choice on Normalizing Cosmetic Genital Surgery,” BMJ 351 (2015).
Creighton et al. “Childhood Surgery for Ambiguous Genitalia,” 36.
Peter Lee and Christopher Houk, “Surgical, Medical and Psychological Dilemmas of Sex Reassignment: Report of a 46, XY Patient Assigned Female at Birth,” Journal of Pediatric Endocrinology and Metabolism 19 (2006): 111–14.
Milton Diamond and Jameson Garland, “Evidence Regarding Cosmetic and Medically Unnecessary Surgery on Infants,” Journal of Pediatric Urology 10 (2014): 2–7.
Milton Diamond and Keith Sigmundson, “Sex Reassignment at Birth: Long-Term Review and Clinical Application,” Archives of Pediatric and Adolescent Medicine 15, no. 11 (1997): 298–304; John Colapinto, “The True Story of John/Joan,” Rolling Stone, December 11, 1997, 54–97.
BBC TV, “Dr. Money and the Boy with No Penis” (London: British Broadcasting Corporation, 2004).
John Money, “Hermaphroditism: An Inquiry into the Nature of a Human Paradox,” PhD diss., Harvard University, 1952, 6.
Alison Redick, “American History XY: The Medical Treatment of Intersex, 1916–1955,” PhD diss., New York University, 2004, 22, 171–72.
That the process of “sexual identity” begins in utero, with the influence of fetal hormones, has been a controversial point. Biologist Milton Diamond, who was primarily responsible for the eventual revelation of David Reimer’s rejection of his gender assignment as a girl, criticized Money’s claim that fetal hormones had little influence on “erotic orientation.” But Money’s research before this time affirmed this view, and indeed, several years after his dissertation research, and without any reference to Diamond, Money affirmed the influence of “fetal gonadal hormones” on the shaping of “neural pathways.” See also John Money, Sin, Science, and the Sex Police: Essays on Sexology and Sexosophy (Amherst: Prometheus Books, 1998). Money’s claims, as the editors of Fuckology observe, were “often brazenly inconsistent.” Lisa Downing, Iain Morland, and Nikki Sullivan, Fuckology: Critical Essays on John’s Money’s Diagnostic Concepts (Chicago: University of Chicago Press, 2015), 9. And yet following this discussion can be complicated by the various ways that “sexual identity” is taken and so confused by authors and critics. In Money’s claims that sex hormones do not influence “erotic inclination,” he appears to separate, as some of his critics and subsequent defenders do not, the various components of “sexual identity.”
Redick, “American History XY,” 22, 166–67, 172. See also Iain Morland, “Cybernetic Sexology,” in Downing, Morland, and Sullivan, Fuckology, 113–14.
Redick, “American History XY,” 26.
Redick, 161.
Money, “Hermaphroditism,” 10.
Sandra Eder, “The Volatility of Sex: Intersexuality, Gender and Clinical Practice in the 1950s,” Gender and History 22, no. 3 (2010): 692–707; Downing, Morland, and Sullivan, Fuckology, 4.
The record of Cadet’s cousin is echoed in a chapter written by Money that appears in a medical textbook on pediatric endocrinology. In a section on counseling patients, Money emphasizes the need to provide information to young patients that does not promote “the trauma of ignorance” and that avoids “the intolerable burden of feeling implicitly accused and blameworthy” for one’s difference. Money, Sin, Science, 331–32.
Peggy Cadet, “Solving the Jigsaw Puzzle,” Narrative Inquiry in Bioethics 5, no. 2 (2015): E1–E3, https://muse.jhu.edu/article/589226/pdf.
Hypospadias describes a penis with a urinary meatus (opening) at the underside or base of the penis rather than at the tip, which is typical. Hypospadias surgeries are the most frequent pediatric urological surgeries and are usually regarded as “routine,” despite a high rate of repeat surgeries and the risk of resulting in what specialists continue to refer to as “hypospadias cripples” in the medical literature. See, for example, Nauman A. Gill and Abdul Hameed, “Management of Hypospadias Cripples with Two-Staged Bracka’s Technique,” Journal of Plastic, Aesthetic, and Reconstructive Surgery 64, no. 1 (2011): 91–96.
Downing, Morland, and Sullivan, Fuckology, 189.
Anke A. Erhardt, “John Money, Ph.D.,” Journal of Sex Research 44, no. 2 (2007): 223–24.
Vern Bullough, “The Contributions of John Money: A Personal View,” Journal of Sex Research 40, no. 3 (2003): 230.
John Money and Anke A. Ehrhardt, Man and Woman, Boy and Girl (Baltimore, Md.: Johns Hopkins University Press, 1972), 173; see also Money, Sin, Science, 318–19.
Bullough, “The Contributions of John Money,” 233.
Bullough, 234.
Erhardt, “John Money, Ph.D.,” 224.
Bullough, “The Contributions of John Money,” 235.
Erhardt, “John Money, Ph.D.,” 224.
Downing, Morland, and Sullivan, Fuckology, 2.
Among such cases of “truly pioneering giants of science,” whose reputations have suffered the sort of vicissitudes Erhardt evokes in her assurances to Money, the thinker who may come most readily to a philosopher’s mind is Aristotle. There is good reason to reject any such comparison out of hand. Aristotle’s role as a pioneer is unparalleled; his work has been foundational to every single discipline, including Money’s. (It is owing to Aristotle’s creative contribution to every recognized discipline, after all, that recipients of the highest certification of educational achievement are awarded a “doctor of philosophy.”) Despite Aristotle’s undeniable contribution, history has seen the rise and dramatic fall, and rise again, of Aristotle’s stature in a number of fields. The narrower comparison to Aristotle’s work in natural science may hold up better, as biologist Armand Marie Leroi has detailed in Aristotle’s Lagoon: How Aristotle Invented Science (New York: Viking, 2014).
Leroi’s generous re-creation of Aristotle’s investigations on Lesbos urges us to set aside any errors regarding function or classification the philosopher made in order to focus on the care and insight Aristotle’s meticulous observations of the natural world demonstrate. Supporters of Money today may want to take the Reimer case as an error, perhaps not exactly like the mistakes that Aristotle made about cuttlefish, eels, or women (See Leroi’s Aristotle’s Lagoon). But if the difference between these errors is not plain to them, then perhaps we are met with another case of the ethical danger presented by the absence (or suppression) of curiosity.
Downing, Morland, and Sullivan, Fuckology, 2.
Jakub Mieszczak, Christopher P. Houk, and Peter A. Lee, “Assignment of the Sex of Rearing in the Neonate with a Disorder of Sex Development,” Current Opinion in Pediatrics 21 (2009): 542.
See, for example, Lee and Houk, “Sex Reassignment.”
See Claudia Wiesemann et al., “Ethical Principles and Recommendations for the Medical Management of Differences of Sex Development (DSD)/Intersex in Children and Adolescents,” European Journal of Pediatrics 169, no. 6 (2010): 671–79; Mieszczak, Houk, and Lee, “Sex Development,” 545.
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