The 2005 International Consensus Conference on Intersex resulted in a substantive revision of the lexicon and guidelines for treating intersex conditions. The speed with which the new treatment protocol has been adopted by healthcare practitioners and providers is considered unprecedented. However, a number of intersex people and advocacy groups have complained that the recommended revisions are inadequately informed by the testimony of intersex people. In this paper, I argue that such complaints are valid and that, despite (...) the conference conveners stated intention, the revisions perpetuate the epistemic injustice long endured by intersex people. By analyzing the Consensus Conference and its results as a failed attempt to redress the epistemic marginalization of intersex patients and advocacy groups, I am able to identify lingering institutional hurdles to cultivating the virtue of epistemic justice in biomedical practice. (shrink)

I offer a reconstruction of contemporary medical procedures of sex assignment for infants with intersex conditions. In the perspective adopted, sex assignment to intersexed newborns can be understood as a procedure that imposes determinate sex predicates. The account describes two stages of sex assignment. At the first stage of the process, the sex predicates ‘female’, ‘male’, or ‘intersexed’ are taken to denote genital morphology. Initial genital assessment of newborns imposes clear boundaries upon the extensions of these predicates through diagnostic (...) schemes of precisification. At the second stage, the sex predicates ‘female’ and ‘male’ denote sex of rearing, a therapeutic and pedagogical project aimed at producing stable and psycho-socially well-adjusted gender identity. The multi-dimensional indeterminacy of prognosticating sex of rearing at the second stage is mitigated through the prioritization of some subsets of the medical data. (shrink)

The 2005 International Consensus Conference on Intersex resulted in a substantive revision of the lexicon and guidelines for treating intersex conditions. The speed with which the new treatment protocol has been adopted by healthcare practitioners and providers is considered unprecedented. However, a number of intersex people and advocacy groups have complained that the recommended revisions are inadequately informed by the testimony of intersex people. In this paper, I argue that such complaints are valid and that, despite (...) the conference conveners stated intention, the revisions perpetuate the epistemic injustice long endured by intersex people. By analyzing the Consensus Conference and its results as a failed attempt to redress the epistemic marginalization of intersex patients and advocacy groups, I am able to identify lingering institutional hurdles to cultivating the virtue of epistemic justice in biomedical practice. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Navigating Intersex Healthcare: My OdysseyCynthiaI was born in 1965 with what the medical community called “ambiguous genitalia.” My initial announcement as a boy was called into question upon closer assessment of my atypical anatomy by medical specialists at a children’s hospital in Chicago. That team of medical experts included a pediatric urologist and a pediatric endocrinologist, as well as a prominent pediatric surgeon, who was at that time (...) presiding president of the relatively newly established American Pediatric Surgeons Association. I have wondered over the years whether, or to what extent, that status and position had any important impact on the unfolding of my medical case.Just over 100 days after my birth, I was surgically and socially reassigned female, and renamed Cynthia. My mother and physician father, ages 25 and 30, respectively, with two young sons at home, did the best they could to move ahead in life as a young family. Part of our family story is that my unusual birth contributed to my parents’ decision to move away from Chicago, where both of my parents had been raised and wanted to settle, and where my father had many professional opportunities. We relocated to Southern California to make a “fresh start” where no one would know the dark secret too terrible to be shared with any beyond a small circle of close friends and family. It would never be talked about openly.With the exception of the rare and dreaded occasions of medical appointments with my primary care physician, or maybe an endocrinologist to renew hormone prescriptions, my parents chose [End Page E3] to have me travel from our home in San Diego to a clinician in Los Angeles, away from my father’s medical colleagues. This decision was puzzling to me at the time, and maybe more so now. These trips were a source of considerable stress and anxiety, as I had no idea of what to expect; my mother told me only that treatment would “help me get my period started.” I was instructed to tell my friends and teachers that I was taking off school on a weekday to go on a “shopping trip” with my mother. As far as I know, these trips were never discussed at home with my older brothers. I heard years later that my parents disclosed some information about me with my brothers when my parents travelled outside the country. They felt that my brothers should know what had happened to me in the event of a catastrophic accident that might prevent my parents from telling me themselves. I suppose they believed that I wasn’t ready at the time to be told my own life and medical history. I can’t say for sure.I don’t want to judge my parents too harshly for how they handled my medical care. I know that it was an extremely stressful and uncertain time for them, and peer support, which I know now is so vitally important for both parents and young affected individuals like myself, was not made available to us. I never thought to ask about such help, or even consider the idea that anyone else would be in a similar situation like mine. I don’t think I would have been even remotely comfortable or willing to discuss it openly at that point.In my early twenties, I had to face another milestone in my journey and in my interactions with the medical community. I had yet to have the vaginoplasty I was told I “needed.” There was no discussion as to whether or not I wanted it or not. It just had to be done, and I was aware of the limitations I had at this vulnerable time in my life when my peer group was sexually active and I was not. My awareness of the obstacle posed by my difference made me avoid the topic of dating; it was difficult even to think about the possibility of a romantic relationship. I put it out of my mind, but I knew that it was a significant concern for my parents. My physician father did most of the prodding to get me to acknowledge the reality... (shrink)

This article analyzes the sex and gender identity rhetoric of members of the Intersex Society of North America, which is a self-help and advocacy group whose main goals are to stop unnecessary genital surgery in ambiguously sexed infants and make medical histories available to adult intersexuals. By examining the organization's indebtedness to feminist and gay/lesbian/transperson theory and practice, the article shows how these political movements have progressively challenged the equation of sex with gender and how intersexuality exemplifies the theoretical (...) and practical problems of identity politics. (shrink)

Die medizinischen Interventionen bei Intersexualität basieren auf den vorherrschenden gesellschaftlichen Geschlechtsnormen, die das intersexuelle Kind als behandlungsbedürftige Abweichung sehen. Aus diesem Blickwinkel wird unter „Heilung“ die erfolgreiche Integration des intersexuellen Individuums in ein eindeutig abgegrenztes Geschlecht verstanden, das durch eine medizinische Behandlung hergestellt wird. Dabei wird einerseits vorausgesetzt, dass unbehandelte intersexuelle Individuen nicht erfolgreich „heilen“ können, und andererseits, dass behandelte Individuen medizinische Interventionen als „Heilungsmaßnahmen“ erleben. Die Exploration der medizinischen Fachliteratur und der Berichte aus erster Hand sowohl von behandelten als (...) auch von unbehandelten Menschen mit Intersexualität lassen diese Vorannahmen fragwürdig erscheinen. In der Literatur wird nämlich belegt, dass als grundlegende Mittel, die tatsächlich bei diesen Menschen zu einer „Heilung“ führen, zentrale Werte wie Selbstakzeptanz der Andersartigkeit, Überwindung der Isolation durch Austausch mit anderen in ähnlichen Situationen und Wahrhaftigkeit von Bedeutung sind. Dies würde bedeuten, dass eine medizinische Intervention zur Überwindung der sozialen Ausgrenzung in Fällen von Intersexualität möglicherweise nicht die effektivste „Heilungsmaßnahme“ ist. Die medizinische Behandlung muss vielmehr darauf ausgerichtet werden, die Reaktion auf Intersexualität zu überwinden, als diesen Zustand selbst als pathologisch anzusehen. (shrink)

When a child is born with ambiguousgenitalia it is declared a psychosocialemergency, and the policy first proposed byJohn Money andadapted by the American Academy of Pediatrics requires determination ofunderlying condition, selection of gender,surgical intervention, and a commitment by allparties to accept the ``real sex'' of thepatient, all no later than 18–24 months,preferably earlier. Ethicists have recentlyquestioned this protocol on several grounds:lack of medical necessity, violation ofinformed consent, uncertainty of standards ofsuccess, among others. This suggests that thefaults in the protocol can (...) be addressed andimproved. Through a rhetorical approachinformed by Perelman/Olbrechts-Tyteca, thedisciplinary pathologization and reconstructionof the body are explored as incidents ofconstraining rhetoric that enact theirpersuasion upon the body of intersexedchildren. This essay shows that thepresumptions, judgments, values, andpresuppositions brought by the physician to theidentification, diagnosis, and curativeprocedures create a network of constraints thatexclude alternative possibilities. The resultis a situation wherein parents, physicians, andintersexed patients have ``no choice'' but toaccept the medical treatment guidelines. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:“Normalizing” Intersex Didn’t Feel Normal or Honest to Me.Karen A. WalshI am an intersex woman with Complete Androgen Insensitivity Syndrome (CAIS). My 57–year history with this has its own trajectory—mostly driven by medical events, and how I and my parents reacted. Most of my treatment by physicians has not been positive. It didn’t make me “normal” at all. I was born normal and didn’t require medical interventions. (...) And by the way, I’ve never been confused about who or what I am.Truthful disclosure didn’t come to me about my biology and what was done to me as an infant until I was 33, when I forced the issue by removing my medical records from my endocrinologist’s office. I learned that there was never full disclosure to my [End Page 119] parents either, and therefore there was no informed consent for the “corrective” surgeries performed on me as an infant. My parents were only told that their little girl would get cancer and would not have a normal development as a girl unless her “deformed ovaries” were removed, and that they should never discuss these problems with me. Thus, after having presented with an inguinal hernia and having exploratory surgery at age 16 months, my intra–abdominal testes were removed in a second surgery two months later. I was pronounced a “male pseudohermaphrodite,” a diagnosis that was shared neither with my parents nor with me.Years later, I discovered an article my surgeon published in 1960 in the Delaware Medical Journal about me and another intersex person he operated on (whom he labeled a “true hermaphrodite”). The article gives a very detailed pathology report of my gonads, but only two sentences regarding my welfare and the rationale for performing those surgeries. Dr. J. F. Kustrup wrote in this article, “These [two cases] emphasize the need for early diagnosis and treatment in order to avoid the possibility of malignant change and to permit these individuals to follow a normal psychosexual pattern.” And: “Hermaphroditism and pseudohermaphroditism are conditions in which early diagnosis and treatment are essential to avoid malignant degeneration and to allow the child some chance toward normal pyschic [sic] development.” I was grateful to find this article because it revealed the unfounded assumptions underpinning the recommendations for treatment, much of which continues today. Worse even than the sort of social prejudice that shapes treatment is the absence of evidence for what doctors treat as “necessary” interventions. For my syndrome, CAIS, there never was—and still is not—data to support the cancer scare, or the opinion that I’d be confused and not have a normal life.From about the age of four, I can remember being different and being stonewalled by my doctor and prevented by my parents from talking about it. The feelings and fears I tried to express were shushed away, and I could tell that my questions were upsetting everyone. Even if I had wanted to be complicit with their lame diversions and nonsensical explanations, the massive abdominal scars were there as a daily reminder and hinted at a very different story.The Road to Hell is Paved with Good IntentionsGrowing up, I was treated like a fascinoma and a lab rat at a major teaching hospital on the East Coast. All I learned from those doctors as a young kid was what it feels like to be ogled, photographed and probed by a roomful of white–coated male doctors. Dissociation made itself my friend, and helped me to cope through the annual genital and anal exams and probing. I thought I was a freak and I felt completely powerless to protect myself from them and their “care”.At my annual appointment at age 12, with my mom present, three doctors told me I was infertile. Learning that I couldn’t have kids really saddened and shocked me, but there was no opportunity to talk about my feelings—either that day, or any time afterward. I was told to stop crying. I remember them telling me that there was no one else like me and that this was a random genetic anomaly, thereby reinforcing the freakishness... (shrink)

Issues surrounding the inclusion of transgender and intersex athletes in the women’s category in sport have spurred vigorous, and sometimes vicious, debate. The loudest voices on one edge of the de...

Based on the case of Caster Semenya, I argue in this paper that the practice of Gender Verification Testing (GVT) in professional sports is unethical and pointless. The presumed benefit of GVT—ensuring fair competition for female athletes—is virtually nonexistent compared to its potential harms, in particular the exposure of individual athletes to a largely interphobic public. GVTs constitute a serious incursion on the athlete’s dignity, autonomy, and privacy; an incursion that cannot be justified by the appeal to fairness. My argument (...) will proceed in four steps. In sections 1-5, I provide background information on the definition of intersexuality, the history and methods of Gender Verification Testing, and the performance gap between men and women in professional athletics. In sections 6 and 7, I develop my main argument against GVT. In section 8, I offer a supplementary argument against GVT from the history of “gender engineering” in professional sports in the 1970s and 1980s. In section 9, I briefly consider the suggestion that the presence of intersex athletes in professional sports would force us to abandon gender segregation. (shrink)

Drawing on the writings of Michel Foucault, this paper argues that the establishment of a new nomenclature and treatment model for intersexed individuals expands both the number of disciplines and the number of physical elements recognized as involved in (im)proper sex development and further, that the temporalization of these elements works to establish sex development as a discipline . Sex development thus emerges as a field of power/knowledge that allows for the distribution of not just individuals with intersex conditions, (...) but of all individuals, in relation to a norm. Further, while many see this model of treatment as finally acknowledging the calls of intersex activists for patient involvement in decision making, for the delaying of unnecessary surgical and hormonal treatment, and for urging honesty among physicians, patients and parents, this article argues that for some these may be hollow victories, requiring that both the patient and his or her family be disciplined into the right attitudes, behaviours and responses to treatment—and that they themselves discipline others accordingly—in order to enjoy these gains. (shrink)

This article focuses on the dynamic between the medical policy on intersex bodies and intersex activists in Israel. Recently, in many countries changes have taken place in medical guidelines regarding intersex patients and laws that regulate medical practices and prohibit irreversible surgeries for intersex babies for cosmetic reasons and without the patient’s consent. In Israel, intersex activists are limited by several factors. On the one hand, they are influenced by the achievements of intersex activism (...) around the world but on the other, the pathologizing medical discourse and socio-medical practices, which include early diagnosis, early irreversible surgeries, and secrecy surrounding intersexed bodies, present obstacles to achieving bodily autonomy for intersex individuals and social recognition of different sex development. Nevertheless, intersex activists are attempting to find different social and media spaces in which to achieve public acknowledgement and future bodily autonomy for intersexed people and seeking medical professionals’ cooperation. Recently, the Israeli Ministry of Health published a new circular for intersex/DSD patients, and while it does not clearly forbid irreversible surgeries, it provides information about the complexities of intersex people and their experience. (shrink)

The voices of 13 people with intersex traits are shared in this symposium to shape dominant medical discourse about intersex bodies and experiences. Four commentaries on these narratives by experts from various disciplines are included in this issue, with each raising questions that hopefully enhance rather than regulate the voices of people with intersex traits.

Die medizinischen Interventionen bei Intersexualität basieren auf den vorherrschenden gesellschaftlichen Geschlechtsnormen, die das intersexuelle Kind als behandlungsbedürftige Abweichung sehen. Aus diesem Blickwinkel wird unter „Heilung“ die erfolgreiche Integration des intersexuellen Individuums in ein eindeutig abgegrenztes Geschlecht verstanden, das durch eine medizinische Behandlung hergestellt wird. Dabei wird einerseits vorausgesetzt, dass unbehandelte intersexuelle Individuen nicht erfolgreich „heilen“ können, und andererseits, dass behandelte Individuen medizinische Interventionen als „Heilungsmaßnahmen“ erleben. Die Exploration der medizinischen Fachliteratur und der Berichte aus erster Hand sowohl von behandelten als (...) auch von unbehandelten Menschen mit Intersexualität lassen diese Vorannahmen fragwürdig erscheinen. In der Literatur wird nämlich belegt, dass als grundlegende Mittel, die tatsächlich bei diesen Menschen zu einer „Heilung“ führen, zentrale Werte wie Selbstakzeptanz der Andersartigkeit, Überwindung der Isolation durch Austausch mit anderen in ähnlichen Situationen und Wahrhaftigkeit von Bedeutung sind. Dies würde bedeuten, dass eine medizinische Intervention zur Überwindung der sozialen Ausgrenzung in Fällen von Intersexualität möglicherweise nicht die effektivste „Heilungsmaßnahme“ ist. Die medizinische Behandlung muss vielmehr darauf ausgerichtet werden, die Reaktion auf Intersexualität zu überwinden, als diesen Zustand selbst als pathologisch anzusehen. (shrink)

Once described as hermaphrodites and later as intersex people, individuals born with intersex variations are routinely subject to so-called “normalizing” medical interventions, often in childhood. Opposition to such practices has been met by attempts to discredit critics and reasserted clinical authority over the bodies of women and men with “disorders of sex development.” However, claims of clinical consensus have been selectively constructed and applied and lack evidence. Limited transparency and lack of access to justice have helped to perpetuate (...) forced interventions. At the same time, associated with the diffusion of distinct concepts of sex and gender, intersex has been constructed as a third legal sex classification, accompanied by pious hopes and unwarranted expectations of consequences. The existence of intersex has also been instrumentalized for the benefit of other, intersecting, populations. The creation of gender categories associated with intersex bodies has created profound risks: a paradoxically narrowed and normative gender binary, maintenance of medical authority over the bodies of “disordered” females and males, and claims that transgressions of social roles ascribed to a third gender are deceptive. Claims that medicalization saves intersex people from “othering,” or that legal othering saves intersex people from medicalization, are contradictory and empty rhetoric. In practice, intersex bodies remain “normalized” or eliminated by medicine, while society and the law “others” intersex identities. That is, medicine constructs intersex bodies as either female or male, while law and society construct intersex identities as neither female nor male. Australian attempts at reforms to recognize the rights of intersex people have either failed to adequately comprehend the population affected or lacked implementation. An emerging human rights consensus demands an end to social prejudice, stigma, and forced medical interventions, focusing on the right to bodily integrity and principles of self-determination. (shrink)

This article supplements Julio Tuleda, Enrique Burguete, and Justo Aznar's “The Vatican opinion on gender theory” (Linacre). It supplements their article by providing a stronger argument for the thesis that “intersex” does not violate binary sex in human beings. In their response to Timothy F. Murphy's criticism of “the Vatican's” (rightfully corrected as the Magisterium of the Catholic Church's) position on the sex binary, they argue subsidiarily that “intersex” does not violate the sex binary. However, their argument against (...) Murphy as stated is implausible; however, I provide a much stronger argument for their conclusion that intersex does not violate the sex binary. I intend to perform this supplementation in two stages, assuming the reader's familiarity with “The Vatican opinion on gender theory.” First, I provide a broader background than Murphy's to the challenge that “intersex” conditions violate the sex binary, showing both how Murphy's criticism is unoriginal and how “intersex” both has been, and continues to be, misunderstood. Second, I problematize Tuleda’s argument, and offer the strongest argument for the conclusion that “intersex” does not violate the sex binary on purely secular/nonreligious grounds (addressing Murphy's complaint). I conclude that the Magisterium of the Catholic Church remains correct that sex is binary. (shrink)

Volume 26, Issue 1, March 2020, Page 77-80.

This book explores the ethical dilemma clinicians may face when disclosing a diagnosis of atypical sex. The moment of disclosure reveals an epistemic incompatibility between scientific fact and social meaning in relation to sex. Attempting to assess the bio-psychosocial implications of this dilemma highlights a complex historic antagonism between fact and meaning making satisfactory resolution of this dilemma difficult. Drawing on David Hume, WVO Quine and Michel Foucault the author presents an integrative model, which views scientific fact and social meaning (...) as codetermining threads in one fabric of knowledge. From this epistemic perspective, the ethical dilemma is understood as a tear in the fabric signifying a rupturing of ontological integrity. To mend this tear and resolve the ethical dilemma three metaphysical perspectives are considered: essentialism, naturalism and emergentism. The book’s unique features include: an exploration of the impact of diagnostic disclosure on people with atypical sex ; a synthesis of the epistemic perspectives of social and natural science facilitating interdisciplinary collaboration; a critical evaluation of three metaphysical perspectives on atypical sex ; the application of Hume’s epistemological and moral distinctions to contemporary biomedicine and bioethics. The book’s target audience includes academics, students and professionals whose work intersects the natural and social sciences, and individuals interested in the metaphysics, epistemology and meta-ethics of sex. (shrink)

Although medical providers rely on similar tools to “treat” intersex and trans individuals, their enactment of medicalization practices varies. To deconstruct these complexities, we employ a comparative analysis of providers who specialize in intersex and trans medicine. While both sets of providers tend to hold essentialist ideologies about sex, gender, and sexuality, we argue they medicalize intersex and trans embodiments in different ways. Providers for intersex people are inclined to approach intersex as an emergency that (...) necessitates medical attention, whereas providers for trans people attempt to slow down their patients’ urgent requests for transitioning services. Building on conceptualizations of “giving gender,” we contend both sets of providers “give gender” by “giving sex.” In both cases too, providers shift their own responsibility for their medicalization practices onto others: parents in the case of intersex, or adult recipients of care in the case of trans. According to the accounts of most providers, successful medical interventions are achieved when a person adheres to heteronormative gender practices. (shrink)

Putting the ethical tools of philosophy to work, Ellen K. Feder seeks to clarify how we should understand "the problem" of intersex. Adults often report that medical interventions they underwent as children to "correct" atypical sex anatomies caused them physical and psychological harm. Proposing a philosophical framework for the treatment of children with intersex conditions—one that acknowledges the intertwined identities of parents, children, and their doctors—Feder presents a persuasive moral argument for collective responsibility to these children and their (...) families. (shrink)

With a few notable exceptions disability studies has not taken account of intersexuality, and it is principally through the lenses of feminist and queer-theory oriented ethical discussions but not through ‘straight’ bioethics that modes valuing intersex difference have been proposed. Meanwhile, the medical presupposition that intersex characteristics are inherently disabling to social viability remains the taken-for-granted truth from which clinical practice proceeds. In this paper I argue against bioethical perspectives that justify extensive and invasive pre- and post-natal medical (...) interference to eradicate intersex. I argue instead that to constitute the necessary conditions for the recognition of the intersexed child as a person, a life valid in its own right, clinicians must refrain from aggressive interference. Clinical specialists presuppose that intersexed children will be socially disabled and unrecognizable as persons; frustrated by the general failure of traditional interventions to assign a sex, clinicians are now pursuing prenatal technologies, including selective termination, to erase intersex. (shrink)

In this critical, feminist account of the management of intersex conditions under 2006's controversial “Disorders of Sex Development” (DSD) treatment model, I argue that like the “Optimal Gender of Rearing” (OGR) treatment model it replaced, DSD aims at securing a cisgendered future for the intersex patient, referring to a normalized trajectory of development across the lifespan in which multiple sexed, gendered, and sexual characteristics remain in “coherent” alignment. I argue this by critically analyzing two ways that intersex (...) management has changed between OGR and DSD: 1) regarding sex‐assignment recommendations for three patient populations and, 2) with the prenatal treatment of pregnant individuals at risk of conceiving a fetus with congenital adrenal hyperplasia with the steroid hormone dexamethasone. I conclude that like OGR before it, DSD also unjustifiably presumes that typical genitalia are necessary for cisgendered development. However, unlike OGR, it appeals to the empirically inadequate, theoretically suspect, and biologically determinist model of gender development known as brain‐organization theory. Given this, I conclude that the treatment of intersex people under DSD continues to be driven by problematically heterosexist and transphobic assumptions regarding the value and normalcy of cisgendered life, while practically and discursively constituting it as such. (shrink)

Technological advances in the field of medicine and health sciences not only manipulate the normal human body and sex but also provide for surgical and hormonal management of hermaphroditism. Consequently, sex assignment surgery has not only become a standard care for babies born with genital abnormalities in the West but even in some Muslim states. On the positive side, it goes a long way in saving children born with abnormal genitalia from numerous legal interdictions of the pre-sex corrective surgery. Nevertheless, (...) the larger ethical and legal questions that medical management of genital abnormality raises to some extent have not been adequately appreciated by contemporary Muslim responses. This article, therefore, in principle argues against surgical management of intersexuality during early infancy from the Islamic legal perspective. (shrink)

This article argues for a ban on the performance of medically unnecessary genital normalizing surgeries as part of assigning a binary sex/gender to infants with intersex conditions on the basis of autonomy, regardless of etiology. It does this via a dis/analogy with the classic case in bioethics of Jehovah Witness (JW) parents' inability to refuse life-saving blood transfusions for their minor children. Both cases address ethical medical practice in situations where parents are making irreversible medical decisions on the basis (...) of values strongly held, identity, and relationship-shaping values—such as religious beliefs or beliefs regarding the inherent value of binary sex/gender—amidst ethical pluralism. Furthermore, it takes seriously—as we must in the intersex case—that the restriction of parents' right to choose will likely result in serious harms to potentially large percentage of patients, their families, and their larger communities. I address the objection that parents' capacity to choose is restricted in the JW case on the basis of the harm principle or a duty to nonmaleficence, given that the result of parent choice would be death. I provide evidence that this is mistaken from how we treat epistemic uncertainty in the JW case and from cases in which clinicians are ethically obligated to restrict the autonomy of nonminor patients. I conclude that we restrict the parents' right to choose in the JW case—and should in the case of pediatric intersex surgery—to secure patient's future autonomy. (shrink)

There exist a variety of biological variations known as intersex conditions or disorders of sex development, which cause a per­son’s sex as male or female to be uncertain at birth. In the past several decades, cosmetic surgery aimed at “normalizing” the infant’s body has become an increasingly controversial treatment for an infant with an IC or DSD. While ICs and DSDs are not addressed directly by Catholic moral teaching, the Catholic Tradition has a number of tools that can undergird (...) a Catholic response to the suffering of people with ICs and DSDs and support improved medical, pastoral, and spiritual care for them and their families. (shrink)

Sporting communities remain entangled in debate over whether and how to include transgender and intersex athletes in competition with cisgender athletes. Of particular concern is that transgender and intersex athletes may have unfair physiological advantages over their cisgender opponents. Arguments for inclusion of transgender and intersex athletes in sport attempt to demonstrate that such inclusion does not threaten the presumed physiological equivalence among competitors and is therefore fair to all. This article argues that the physiological equivalency rationale (...) has significant limitations, including an inordinate emphasis on sport as a comparative test. Instead, this article contends that arguments for narrativity rather than physiological equivalency show that exclusion is not only misguided but also undesirable: it is detrimental not only to the excluded athletes but to sport itself. The article yields several important consequences including calls for revisions to policies on transgender... (shrink)

This article develops loneliness as a political and social justice issue by illustrating the harmful personal and social consequences of the medical jurisdiction over and constitution of variations in sex characteristics. Whilst connections between loneliness, health and illness have been well established, this work customarily identifies the ways illness can lead to, or be caused by, loneliness. Instead, I provide an account of the central role of medicalisation and medical management in producing loneliness. By doing so, I underline the imperative (...) for medical practice to consider its influence upon social and personal, as well as physical, wellbeing. Drawing on stories shared through solicited diaries followed by in-depth interviews with seven people with sex variations and two parents in the UK, I show how accounts of loneliness help to illuminate the violence of abandonment, silencing and marginalisation that often goes unheard, together with hidden or normalised systems of harm. Building on concepts of ethical loneliness and ontological loneliness, I show how structural violations operate to injure trust and self-worth, leading to social unease. I argue for the importance of people with sex variations finding sites of comfort and acceptance, but note the ways that some forms of medicalisation can inhibit alliances and community formation, despite diagnoses also carrying the potential to facilitate informal support structures and collective identities. By bringing together intersex studies with discourses of loneliness, I develop a better understanding of loneliness as a product of social and systemic violence, and the ways in which medical discourses tie in with larger structures of oppression, coercion and control. This article concludes by underlining the need for structural change in our approach to and understanding of sex variations, and with a call for us to become more attentive to these stories of medical harm, to ensure that they are heard and to seek necessary justice. (shrink)

The history of the field of intersex bodies/bodies with variations of sex development reflects the ongoing tension between sociomedical attempts to control uncertainty and reduce the duration of corporeal uncertainty by means of early diagnosis and treatment, and the embodied subjects who resist or challenge these attempts, which ultimately increase uncertainty. Based on various qualitative studies in the field of intersex, this article describes three temporal sociomedical approaches that have evolved over the last decade and aims to address (...) the uncertainty surrounding intersex/VSD bodies. These approaches are the corrective-concealing approach, which includes early surgeries and hormone therapies intended to “correct” intersex conditions and the deliberate concealment of the ambiguity and uncertainty associated with intersex conditions; the preventive approach, which involves early genetic diagnostic methods aimed at regulating or preventing the recurrence of hereditary conditions under the umbrella of VSD; and the wait-and-see approach, which perceives intersex bodies as natural variations and encourages parents to take time, wait, and give their children the right to bodily autonomy. A comparison of these approaches from biopolitical, phenomenological, and pragmatic perspectives reveals that time is an essential social agent in addressing and controlling uncertainty, a gatekeeper of social norms and social and physical orders, and, on the other hand, a sociopolitical agent that enables creative social change. (shrink)

Intersex—the fact of bodies neither typically male nor female, together with the grim history of its medical management—was a topic for feminist theory before there was such a thing as intersex activism. Indeed, critical academic scholarship about intersex supported the consciousness raising that made an intersex activist movement possible. Activist engagement, in turn, has expanded the understanding of the theorists whose work is responsive to that activism. Central to the thinking about intersex are the questions (...) of identity and its limits that are an important focus of the work of Gloria Anzaldúa, whose narrative suggests she had a condition associated with intersex. While her work largely predates intersex activism, it powerfully encapsulates the tensions displayed in contests over identity that have become central over the last 15 years, and furthermore offers insight into the challenges that lie ahead. (shrink)

Intersex—the fact of bodies neither typically male nor female, together with the grim history of its medical management—was a topic for feminist theory before there was such a thing as intersex activism. Indeed, critical academic scholarship about intersex supported the consciousness raising that made an intersex activist movement possible. Activist engagement, in turn, has expanded the understanding of the theorists whose work is responsive to that activism. Central to the thinking about intersex are the questions (...) of identity and its limits that are an important focus of the work of Gloria Anzaldúa, whose narrative suggests she had a condition associated with intersex. While her work largely predates intersex activism, it powerfully encapsulates the tensions displayed in contests over identity that have become central over the last 15 years, and furthermore offers insight into the challenges that lie ahead. (shrink)

This article discusses the ethics of the use of preimplantation genetic diagnosis to prevent the birth of children with intersex conditions/disorders of sex development , such as congenital adrenal hyperplasia and androgen insensitivity syndrome . While pediatric surgeries performed on children with ambiguous genitalia have been the topic of intense bioethical controversy, there has been almost no discussion to date of the ethics of the use of PGD to reduce the prevalence of these conditions. I suggest that PGD for (...) those conditions that involve serious medical risks for those born with them is morally permissible and that PGD for other “cosmetic” variations in sexual anatomy is more defensible than might first appear. However, importantly, the arguments that establish the latter claim have radical and disturbing implications for our attitude toward diversity more generally. (shrink)

Children with innate variations of sex characteristics (also termed differences of sex development or intersex traits) are routinely subjected to medical interventions that aim to make their bodies appear or function more typically female or male. Many such interventions lack clear evidence of benefit, they have been challenged for thirty years, and they are now understood to violate children’s rights to bodily autonomy and bodily integrity. In this paper I argue that these persist in part due to epistemic injustices (...) and biomedical authority. Epistemic injustices include limited disclosure of current practices, the systemic marginalisation of community voices and psychosocial professionals, and attempts to discredit or misrepresent testimony. Bioethics has largely failed to change medical practice, and sometimes plays a role in perpetuating epistemic injustices. I find that the development of an intersex movement provides opportunities for epistemic justice and liberation by engaging with other disciplines and promoting oversight of medical decision-making. The paper draws particularly on Australian sources, including internationally influential ethical principles. (shrink)

I present the notion of epistemic injustice coined by Miranda Fricker and apply it to the situation of people with intersex traits, especially intersex children who are the subjects of “normalizing” surgery. Several studies from Polish hospitals show that both early “normalizing” surgery and the decision to postpone such surgery can result in harm to an intersex child. For this reason, I claim that “normalizing” surgery is only an expression of the epistemic hermeneutical injustice existing before the (...) surgery and that its source is the lack of an empirically adequate notion of sex characteristics. The binary notion is too simple to grasp intersex traits, and this epistemic dysfunction turns into practical harm. In contrast to Morgan Carpenter, I defend the nonbinary gender category as being important to limiting “normalizing” surgery. (shrink)