What Haunts Intersex Studies?

There has been increasing talk of intersex studies in the social sciences, in recent special issues devoted to the topic in Culture, Health and Sexuality, in Transgender Studies Quarterly and in Psychology of Sexualities Review, for example. Drawing on an earlier generation of scholarship and advocacy, intersex studies is engaged with an articulation of human rights and ethics. These rights are risked by ongoing routinized medical care that is described to those who experience it as patient-centred, performed by multidisciplinary teams (MDTs) and backed up by consensus statements. Sociology has had a stake in intersex studies and debates about the proper limits of medicalization since its inception in the late 1990s. While this statement could be made about any number of (de)medicalization controversies, intersex is special. Here, medical treatment has always been justified on the grounds that ‘society’ cannot tolerate intersex embodiment, often described as ‘variations in sex characteristics’ (VSC) in human rights documents, or ‘disorders’ or ‘differences of sex development’ (DSD) in medical classifications. Relatedly, intersex psychosocial subjects are often considered best off not knowing about, talking about or making social identities or movements out of their embodiment. As the form of embodiment here is about the development of sex characteristics, intersex studies also compel consideration of the relationships between bodies and society, and of those between public and private bodies. Four recent monographs on socio-legal studies, disability studies, clinical psychology and African studies show the diverse fields that intersex studies now touch. They call for sharper thinking about the forms of social construction being applied to natural variation in human sex characteristics, and the people who have them. Jointly these books illustrate how intersex is being put into dialogue with an increasing range of fields, demonstrating its wide-ranging, sociological relevance.

First, intersex studies often ask a lot of law to deliver human rights where medicine has failed. Socio-legal scholars Fae Garland and Mitchell Travis promise that their book Intersex Embodiment: Legal Frameworks beyond Identity and Disorder will investigate ‘the conditions that frame our understanding of the body and that create the institutional conditions under which intersex bodies can emerge or are denied’ (p. 1). They approach the vexed question of how to define intersex via the different institutional and disciplinary attempts that regulate, construct and control intersex bodies, giving attention to the history of how dominant medical conceptions of intersex emerged (Chapters 1 and 2), the legal strategies used to secure intersex rights (Chapters 3, 4 and 5) and the promises of emerging psychosocial understandings (Chapter 6).

The first two chapters on medicine and psychology would serve as a useful introduction to contemporary intersex studies for a broad range of readers. Chapter 3 argues that intersex frameworks and policies that draw on understandings of non-binary gender identities can mask intersex issues under more familiar transgender concerns. Such legal strategies risk misrepresenting the large majority of intersex people. Similarly, Chapter 4 on attempts to locate intersex within LGBT+ notes the promise of extending anti-discrimination and equality laws but also the threat of conflation and misrepresentation. Chapter 5 focuses on specific laws that have set out to prohibit non-therapeutic surgical interventions on intersex variations, in Malta for example. Here the authors urge caution about what the law can achieve pointing to an ‘implementation gap’ between what Maltese law promises and the medical interventions that the law actually prohibits.

One gets the sense from these chapters that the law repeatedly delivers less protection than originally hoped. In the final substantive chapter, Garland and Travis turn optimistically to critical psychosocial approaches that reframe intersex not as a disorder but as a form of bodily difference with psychosocial implications. The authors admire how this shift makes the classic sociological move to relocate naturalized problems out of individuals and into social relationships. Garland and Travis stress the potential that clinical psychologists might have as change agents working within the multidisciplinary hospital teams upon which current care standards depend. But they also highlight the social marginalization of those psychologists by biomedical colleagues, particularly paediatric endocrinologists, which might limit psychologists’ effectiveness.

Garland and Travis leave readers with the sense that misrepresentation and implementation gaps in law and medicine remain trenchant barriers for intersex human rights. The authors apply this understanding reflexively, describing how their research questions and their measured conclusions evolved as they conducted empirical research with intersex stakeholders. As such, Garland and Travis not only engage sociologists with pressing questions about legal recognition; they also demonstrate what happens when social scientists do, and do not, engage the people they are aiming to write about. This book will be of interest to readers outside of intersex studies too. The authors’ arguments – about the role of LGBT+ frameworks, for example – are of broad relevance to sociologists interested in the inevitable dynamics of identity recognition and occlusion in social movements. What is gained or lost when the complex affinities between intersex and LGBT+ issues are remembered or forgotten? What form of LGBT+ sociality does, or should, exist to afford intersex humans agency and freedom from harm? As the rise of right-wing populism and anti-trans organizing described in this volume shows no sign of abating, what social positionings are the limited implementation of legal and medical ideals likely to leave for people born with variations in sex characteristics?

Disability studies and queer theory are two fields intimately bound up in the social science strategy of reframing othered individuals by placing ‘their’ apparent problems in ‘our’ society. Celeste Orr’s Cripping Intersex explores the connection between intersex studies and feminist disability studies, often drawing on queer theory to disrupt and deconstruct ableist and normative constructions of bodies and identities. Orr’s book names the problem of ‘compulsory dyadism’, a concept that is then used to critically analyse how naturalized gender binaries can – both discursively and materially – disable intersex bodies and human subjects. The book is divided into three main parts focused on the controversial medical interventions on children, the inclusion of intersex athletes in women’s sports and the bioethics of screening for markers of intersex variations during pre-implantation genetic diagnosis (hereafter PGD). All three areas require analysis of complex relationships of embodiment and constructed difference, and of the conceptual shift from disorder to difference when thinking about exceptional forms of bodily variation.

Orr is very well read in the critical fields upon which this book draws. Consequently, Cripping Intersex introduces the reader to a range of important critical thinkers in intersex studies and (feminist) disability studies. Orr also connects these fields by making original and insightful observations about ableist metaphors baked into taken-for-granted clinical language about intersex, such as ‘blind vaginas’, and ‘hypospadias cripples’. Orr also does well to position the present matters that concern her book in historical context. For example, in the second section on athletics, she gives good historical accounts of (1) colonial discourse that constructs sex binarism as a particular attribute of White bodies, (2) sex testing practices and the present-day co-opting of feminist ideas to justify them and (3) disabled athletes’ rejection of positive discourses of exceptionality, which emerged with and through the Paralympic movement. Similarly, the third section on PGD includes an instructive history of eugenics, which frames her analysis of recent debates regarding the application of PGD to intersex. Even those familiar with intersex will be challenged to think through her analysis of how athletes are categorized to compete based on sex characteristics and disability. Those new to the field might wonder if the perpetuation of outdated ableist metaphors is a sign that this area of medicine is badly in need of an upgrade.

However, Orr’s engagement with the critical theorists she cites could be more systematically sustained and evenly applied. Researchers active in the sociology of health and illness, or science and technology studies may wonder whether the account of medical experts’ actions and intentions in Cripping Intersex is well rounded. If Garland and Travis give us reason to scope the implementation gaps around proposed legal and medical solutions, Orr risks constructing some new ideals here. This is most evident when she calls for non-competitive international sports as the solution to categorization problems. This solution seems feasible only when the reader forgets the insights of sports sociologists that international sport has its socio-economic organization because it is structured by dynamics of national competition. Throughout Cripping Intersex, the reader may notice the absence of empirical content, reflexive researcher positioning and the exploration of intersex narratives that were more evident in Garland and Travis’ work.

Clinical psychologist Lih-Mei Liao’s Variations in Sex Development constitutes a development in psychosocial understandings of intersex of the sort that Garland and Travis imagine. Written in the year after Liao’s retirement from the UK National Health Service, this mature work brings the unique professional experience of a quarter of a century of psychotherapeutic, research and advocacy work to therapeutic interventions in the lives of intersex folks. Variations in Sex Development is divided into two sections. The initial six chapters (1–6), trace the evolution of this contested healthcare field. Liao guides the reader through medical ‘issues’ such as debates around ‘true sex’ and terminology, and the development of medical and psychological practices under the influence of psychologist John Money, the emergence of surgery as a resolution of uncertainty and patients’ protests against John Money’s protocols. Liao’s work particularly evidences the importance of the sociological in its second half (Chapters 7–14), which applies a sociologically informed lens to common issues that clients with variations in sex characteristics have brought up in her therapy room in the late 20th and early 21st centuries.

Liao’s take on the contentious history in the first half of the book is remarkably reparative. The work of psychologist John Money in the 1950s at Johns Hopkins is often given a singular position as the origin of modern misunderstanding and abuse in intersex studies. (Indeed, the other books reviewed here evidence the sustained purchase of that trope in intersex studies.) Liao, however, finds a point of identification with intersex studies’ preferred villain through her own and Money’s shared positioning as unlikely and precarious psychologists in multidisciplinary medical teams. Both psychologists worked through periods of history where facts were in flux. Accordingly, Liao reads Money’s work with the assumption that he is a care professional, uniquely positioned by his own hospital context, and profoundly limited by his own conceptual framework. He becomes for her someone who often failed to bring about the ideals for care that his own horizons allowed him to image. This risky identification with Money exemplifies Liao’s commitment to vulnerability and openness, and opens up the ‘implementation gaps’ between the humanistic ideals of medicine and psychology and the practices of multidisciplinary teams to historically grounded critical scrutiny. Accordingly, through her accounts of both Money and herself, Liao contradicts an easy sociological dismissal of the psy- professionals as unwitting dupes of governmentality. Rather the clinic is seen as a site of limited imagination and agency with very real consequences. God forbid you should ever have to take sick children there.

Liao’s work most clearly evidences the importance of the sociological in shaping psychological subjects in its second half. Chapters 7–14 apply the Power Threat Meaning Framework (PTMF) to common issues brought up in therapy: ‘normalising’ genital surgery, caretakers’ grief and growth, gender assignment, disclosure, sexual intimacy and the choice to live a child-free life. This PTMF, first developed to reframe experiences of psychological distress, is deeply indebted to sociological analyses of how power gets under the skin of individuals. By the end, the often-overlooked dilemmas that psychological practice is meant to address seem all too familiar life experiences to be muddled through, without ideal resolutions. The vignettes also give a convincing account of how therapy might proceed in these contexts, making clear how the sociological lives in the individualized space of the therapy room.

This book is undoubtedly ground-breaking in the psychology of intersex, but it deserves a wider interdisciplinary readership. Its first half provides a thought-provoking introduction to the field that touches on medical sociology, law and social movements. Its later chapters are written with the hope that they could sensitize care professionals. Those chapters could similarly be used to sensitize unfamiliar social researchers experiencing initial academic fascination with intersex. It would be fascinating to see Liao’s articulation of the PTMF developed as a methodology for sociologists, particularly those working in the sociology of health and illness. Indeed, these chapters – through their use of vignettes – offer a unique solution for a field whose values are oriented around bringing light to silenced lived experiences while respecting the (often already violated) privacy of individuals with variations of sex characteristics. The narrative structure of the book also stays close to experience that has not been packaged into life narratives. It opens and closes with stories of people with variations in social interaction with each other and who are in the middle of live events, a reminder of what ‘experience’ comes into the therapeutic room before sense has been made of it.

All three of the books considered thus far include occasional reflection on the western location of medicine, law, ethics, psychology and athletics regulations. The fourth, Amanda Swarr’s Envisioning African Intersex, argues that ‘colonial histories and scientific racism – a contrived comparison of bodies to justify white supremacy – form the basis for all intersex medicine’ (p. 2). This book illustrates a broad swath of South African history. Successive chapters focus on the South African woman Sara Baartman (1789–1815), who was displayed to a European voyeuristic gaze; dehumanizing photographs of African bodies created to shock and repulse; an unpublished MSc dissertation that materialized the myth that Bantu women are particularly likely to have intersex variations; the life and theoretical contribution of South African intersex activist and theologian Sally Gross; and the invasive and racist sex testing of athlete Caster Semenya (along with the resistance to colonialism that her case has inspired among her South African compatriots). Throughout, Swarr dispels the myth imposed by European colonizers that Black people from the Global South possess innate ‘race gender “abnormalities”’ or intersex variations (p. 3), details how that myth was sedimented during the Apartheid era and voices intersex theory that emerged post-Apartheid. Swarr’s history of engagement with the organization Intersex South Africa and its former leader Sally Gross grounds her positionality. All author royalties from Envisioning African Intersex are being donated to that group.

Later South African activists displaced doctors’ impositions to fashion self-representation. Swarr articulates activists’ analyses of viewpoints revealing invisibility, hypervisibility and medical violence. By unseating colonial visions of gender, and publicly demanding accountability and retribution, intersex South Africans are actively disrupting medical violence, decolonizing gender binaries and inciting policy changes. Swarr’s book is a persistent argument that the important edge of thinking comes from activists and intersex communities. It is also theoretically sophisticated. Sensationalizing African ‘exotic’ genitals created an enduring citational chain that blurred the lines between science and fiction. Consequently, sociologists struggling to make sense of Judith Butler’s understanding of the performativity of speech acts that materialize ‘sex’ as dissimulated citationality will find the perfect concrete case in Swarr’s treatment of scientific myths linking race with intersex variations. Moreover, Swarr’s analysis of South Africa affords generalizable insights into the racism of intersex research in Papua New Guinea and the Dominican Republic, which are briefly sketched here. A contribution to African studies, Envisioning African Intersex is also a playbook for the decolonization of western social and medical science understandings of intersex from several locations in the Global South.

Swarr’s analysis of the power of bottom–up social movements finds particular expression in her analysis of contemporary social support for Caster Semenya. Like Orr, Swarr’s book will convince its readers that the dubious medical agenda of correcting intersex variations finds new targets in the bodies of Black and brown women athletes, and unique expression through the discredited science of the IAFF (International Amateur Athletics Foundation, now World Athletics). However, unlike Orr’s ideal of competition-free sport, Swarr’s analysis of the social media through which South Africans have rallied behind Caster Semenya shows that there can be a sociological reality to pro-intersex sentiments expressed through fierce support for the athletes that represent your nation. Semenya’s South African supporters cut-and-mix imagery of Baartman and Semenya to materialize the historical continuity of racist European colonialism, which is articulated in a fascination with African women’s bodies, and its relevance to sex testing athletes. Decolonial resistance that interrupts the citational chain linking Africa and intersex is not simply logocentric.

Although the book begins with some familiar dualisms – intersex/medicine, Europe/Africa, White/Black, ideology/experience – it illuminates much more ambivalent and jarring histories of how intersex and South Africa have signified each other over the last 200 years. These initial binaries do not contain these histories by the end, leaving Swarr unsettled in the book’s epilogue, admitting that the exploitative photographs she has seen still haunt her. In her analysis of this haunting, she draws on the works of Derrida and Gordon, and revisits her reasons for rejecting the use of those photographs; sharing them would constitute another act of violence in the continued objectification of intersex bodies. Yet, activists’ replication of these images aims to prompt a different kind of scrutiny, shifting attention away from bodies towards the societal relationships that constitute them as ‘other’. This leads to our summative thoughts about the kinds of sociality that intersex studies now need sociologists to conceptualize.

Discussion: What Haunts Intersex Studies?

Jointly these volumes indicate how a growing field of intersex studies is drawing on and informing an increasing range of disciplinary and inter-disciplinary thinking. These books offer sustained critical attention to the ideals of medicine, law, psychology, ableism and colonialism. As such, their authors call sociologists to join a new kind of ‘multidisciplinary team’. The sociological is central to intersex studies’ refusal to rest with medical attributions of difference to the variations of sex characteristics with which some folks are born, or its corollary assumption that the stigma and silence that such embodiment risks are so sociologically inevitable and inherently unbearable that it is best if non-medical disciplines just do not talk about intersex at all. These books evidence multiple forms of individual and collective resistance to the message that intersex people have no place in society, and would not be missed if a technology such as PGD ensured an intersex-free future for humanity. Against such eugenic futurism, intersex studies demonstrate creative forms of meaning-making happening in the past and in the present. Even as they respond to the urgent threats that intersex sociality goes unrecognized or gets obliterated, the scholars whose books are reviewed here are also vigilant to scholarly habits of speaking for others rather than with or to them. If there is clear cause for optimism about intersex studies, then it is because these books demonstrate a shared understanding that authors can no longer write – as John Money once did – with confident assumptions that intersex people will never read what has been written about them and will never talk back.

As these books are also vigilant to cruel optimism, we are loath to conclude by overpromising what ‘intersex studies’ might deliver. Nonetheless, intersex studies could provide potent analyses of how lives are endowed with meaning, by the self or others, between knowledge of what is and visions of what ought to be. The four works reviewed all point towards haunting to name this space. Swarr is keen to excavate Sally Gross’ concept of ‘social death’, a state in which individuals are not recognized by society as fully human. Garland and Travis’ ‘implementation gaps’ in legal and medical solutions are haunted by the failure of ideals to materialize, as some of their participants use the language of haunting to make sense of their own experiences. Orr draws on queer theory to consider how intersex lives are haunted by lost futures, a theoretical point that finds expression in Liao’s discussion of parents’ grief upon learning of the child’s diagnosis. One might reasonably hope for a future field of intersex studies that is not only coming out of the shadows of other fields from which it draws but is also in a more egalitarian dialogue with them. What dominant narratives, in disability studies, for example, does the emergence of intersex studies disrupt? As intersex studies are diversifying, these four books will be of great use to sociologists keen to work in this area, as well as to those who have been doing so for a long time. More than this, these books demonstrate something transferable from intersex studies to researchers working with minoritized groups in any setting, but particularly medical settings in which human experience is haunted by medical, legal and colonial histories and constrained by contemporary arrangements organized around limited ideals.