Paula Sandrine Machado
It was in the early stages of fieldwork at the hospital that a meeting was called for medical staff from different specialities to discuss the ‘case’ of a child born at the institution a few days previously. At that time, the team was still referring to the baby as ‘Carolina’s newborn’. A meeting of specialists had been called to deal with a ‘case’ of intersexuality – now known by the term disorder of sex development (DSD) in the medical sphere2 – where the precise diagnosis and attribution of male or female sex to the baby was seen as especially complicated. The meeting was attended by two paediatric surgeons, a paediatric endocrinologist, a psychiatric intern, a geneticist, a genetics intern, a paediatric intern, a neonatologist, two medical students and me.
Factors considered relevant to a diagnosis were presented: data from physical examinations and tests to determine karyotype and hormone levels aimed to offer a more or less coherent picture, but at the same time indicated that other tests were required to fill in gaps concerning the diagnosis. In relation to the karyotype test, the geneticist reported that he could not ‘see’ clearly whether either the XX or the XY karyotype – considered respectively as the female and male karyotypes – were present. ‘We can’t say that it is Y’, he stated, as ‘none of the markers is indicative of Y’. The endocrinologist, contrariwise, pointed out that the ‘gonads’ were producing ‘testosterone’.
The discussion continued and various opinions were offered regarding the child’s ‘biological condition’ and the ‘psychological aspects’ of the mother, until one of the doctors surprised the group with the question, ‘but why operate?’ The question was received with a degree of shock and even impatience. Laughs and mutters could also be heard. After all, the team’s concern was how best to intervene, which required the unequivocal definition of the baby’s sex. The doctor’s question sounded foolish in the context, because, the others remarked, ‘how would the child live in the world without a defined sex?’ This was precisely the decision they had come together to make.
This vignette, drawn from the fieldwork, raises at least two questions. First, it shows the complex clinical/surgical and social situation in which the medical staff had found themselves. Even though more or less established practices exist in the medical field for issues related to intersexuality, this particular case shows how some decisions can be very difficult to make and that all should ideally involve professionals trained in the different specialities. Second, the vignette shows that ‘sex’ often becomes an all-encompassing category, including everything that defines a person and makes them, in a sense, recognisable.
In relation to these two problems, this chapter analyses a number of issues relevant to the sociomedical management of intersexuality. The elements involved in decision making form an entangled complex net consisting of several different relational levels. These include: (1) the relations between the fields of knowledge involved (paediatrics/neonatology, paediatric endocrinology, paediatric surgery/ urology, genetics and psychology); (2) daily relations between the specialists (including, for example, team meetings, case discussions and exchanges of information); and (3) the relations established between the health professionals and the intersex people and their families. For the purposes of this analysis, I will focus mainly on the first of these levels, although it is important to note that the divisions between them are not stable and each level articulates with and involves the others.
Findings reported on here come from a qualitative, socioanthropological study conducted using ethnographic methodology in a hospital in southern Brazil. The principal investigation techniques were participant observation, informal interviews and semi-structured interviews. Data were collected in the paediatric surgery/ urology and paediatric endocrinology outpatient clinics, at meetings of relevant specialist teams and in discussions with health professionals of intersex ‘cases’ with less straightforward medical solutions. Semi-structured interviews were conducted with the relatives of medically ‘diagnosed’ intersex people under treatment by health professionals at the study hospital; the relatives of children ‘diagnosed’ during the course of the study; young people who had already undergone genital ‘correction’ surgery and/or hormonal treatment; and health professionals involved in decision making and treatment regarding intersexuality including a paediatric endocrinologist, paediatric surgeons, a geneticist, a paediatrician and psychologists.
It is important to note that none of the young intersex people or family members had any involvement in the intersex political movement, neither did they describe themselves or their children as intersex. In addition, although the medical literature mentioned ‘intersex states’, even the medical staff with whom I worked at the hospital rarely used the term ‘intersex’ among themselves and, as far as I could gather, never used it during consultation with intersex children or young people and their families. Instead, in the course of their everyday discussions the medical staff used the term ‘ambiguous genitalia’ among themselves when referring to certain conditions that they defined as intersex, although they stressed the importance of not doing so in front of the families, preferring the term ‘incompletely formed genitalia’. I therefore use the terms intersex and intersexuality as reflexive choices by the researcher rather than as self-identified categories or ones commonly used by the people who participated in the study. I use the term intersex as defined by activist groups for two reasons: (1) it relativises the idea of intersexuality as pathology and (2) it broadens the range of reference beyond medical classifications without completely losing touch with them. The central idea of this definition is that of variation: that intersexuality includes a range of situations in which the body varies in relation to a culturally established male/female dichotomy (Cabral and Benzur 2005). These variations may include the anatomical appearance of internal and/ or external genital organs, as well as hormonal, gonadal and/or genetic characteristics.
As described elsewhere (Machado 2005a, 2006), medical protocols in Brazil specify that the moment a baby is born with a genital anatomy considered ‘ambiguous’, a full team of specialists – endocrinologists, surgeons, paediatricians, geneticists, psychologists – should be activated in order to investigate the ‘cause’ of the condition, determine the ‘diagnosis’ and decide which ‘corrective’ modalities will be applied, be they surgical or hormonal. During this process, ‘looking’ is key to evaluating the best form of intervention. The surgeon’s and endocrinologist’s ‘gaze’, informed and supported by all the other collected information and opinions, will ‘recognise’ the best clinical or surgical management to be applied. Meanwhile, psychology will direct its ‘gaze’ towards the families of the children and their ‘future wellbeing’. The psychologists may or may not be called at any given stage in the process, but their constant presence at meetings of the paediatric surgical team at the study hospital gives psychology significant weight as a backdrop for the decisions, be it through support to the team or through offering the necessary theoretical justification for early surgical intervention.
By analyzing the discourse of the medical practitioners who made up the empirical universe of the study, a general distinction could be made between cases that were considered by them to be ‘simpler’ or ‘more difficult’, based on the degree to which the baby’s sex is easily discernible and/or that intervention is possible. On the basis of observations and interviews, cases are normally considered by doctors to be simpler if they satisfy at least one of the following criteria: (1) when it is judged that there is little or no chance of virilisation or masculinisation of the external genitalia, which leads to an assignation of female sex; and (2) when, despite the supposed visual ‘genital ambiguity’, a certain ‘harmony’ can be established by doctors between the different levels at which sex is located, such as when genetic characteristics considered female can be ‘lined up’ with female gonads (ovaries), female internal anatomy (such as the existence of uterus and fallopian tubes) and the possibility of reproduction.
Cases classified as congenital adrenal hyperplasia (CAH) in children with 46XX karyotype are not only the most frequent, but are also those regarded by the doctors as most straightforward with regard to sex assignation and choice of treatment. According to medical definitions in children with 46XX karyotype, CAH can lead to an increase in the size of external genital organs at birth or thereafter. Usually, the child will have reproductively functional uterus and ovaries. In such cases, there is usually no doubt for the doctors that female sex should be assigned and that the best approach is hormonal intervention (which is, in some cases, vital for the control of salt loss by the individual organism), and surgical intervention to reduce the size of the ‘hypertrophied clitoris’. The most common medical argument is that the child in question is a ‘normal woman’ (or ‘girl’) with uterus and ovaries, the possibility of fertility, and the possibility of reconstruction of a vagina by surgical means.
Other ‘cases’ often classified as ‘simple to resolve’ were those described by the doctors as suffering from complete androgen insensitivity syndrome (CAIS). When referring to children born with karyotype 46XY but whose testosterone receptors do not respond. These ‘cases’ were unlikely to be diagnosed in the antenatal period or at birth, as the appearance of the external genitalia is considered ‘standard female’. The diagnosis is frequently made in adolescence, often when medical assistance is sought as a result of absence of menstruation or minimal breast development. The combination of the ‘female appearance’ of the external genitalia and the absence of ‘peripheral testosterone response’ – which means, in practice, that there is no ‘development of the penis’ or of ‘male secondary sex characteristics’, such as body hair growth and deepening voice – means that cases identified as CAIS raise no doubts for the doctors about the appropriateness of assigning ‘female sex’.
In each of these two situations, there is also medical concern with the possibility of a ‘virilisation of the brain’ in female-assigned children who receive ‘testosterone superstimulation’ in the antenatal period. In this case, there is a further type of ‘ambiguity’ to be managed: namely a possible lack of ‘harmonisation’ between the ‘corrected’ anatomy and the assigned gender.
The cases regarded as ‘difficult’ are those that do not meet, or meet only partially, the criteria set out earlier. This category normally includes partial androgen insensitivity syndrome (PAIS) and mixed gonadal dysgenesis (MGD) XY, where difficulties can arise in making a ‘precise’ diagnosis and in deciding about sex assignation. It is interesting to note that both cases refer to situations where the main difficulty, in fact, is knowing whether the ‘potential’ for male sex can be more or less satisfactorily guaranteed by the intervention techniques. Guaranteeing fertility is of lesser significance, especially compared to the situation just described for CAH (in fact, fertility is even less present in these cases).
It could be argued that these situations are more difficult because ‘ambiguity’ is more evident and the genetic, hormonal and anatomical aspects are seen as being less ‘harmonised’, especially when there are only two sexes to choose from. In a more explicit and complex way, these ‘cases’ bring doctors face to face with the variability of sex and the different levels at which it can be located; paradoxically, such levels are defined by medicine itself: anatomical, hormonal, genetic, psychological, social and so on. As a result, categorising sex in an either/or framework becomes more difficult.
In order to reach decisions regarding intersexuality, a complex set of factors needs to be taken into account which includes the diagnosis, the appearance of the external genitalia (especially their size and ‘structure’), the viability of surgical techniques, hormonal possibilities (for example, levels of testosterone, oestrogens and luteinising hormone) and potential for fertility. These factors, which are, in fact, considered in all the decisions, direct the issue simultaneously to biological and to sociocultural elements.
The most important factors when considering assignation of female sex are: reproductive capacity; anatomical possibility of constructing a vagina that could be penetrated by a penis; a vagina with the possibility of (hetero)sexual pleasure for the woman (which is associated with an attempt to maintain clitoral innervation); and a clitoris that is not ‘too large’ (Machado 2005a). For male sex, the following factors are emphasised: the possibility of constructing a penis that will develop to a size and erectile function regarded as ‘adequate’ for a man; the possibility of future sexual pleasure (which is associated with ejaculation); the possibility of ‘satisfactorily penetrating’ a vagina; and reproductive capacity (which is, in fact, almost non-existent when dealing with male assignation). There is also concern with the issue of ‘urinating standing up’, which is considered socially important for boys (Machado 2005a).
There is also a certain hierarchy assigned to the elements listed, in which the maintenance of a virile, ‘penetrative’ masculinity occupies a privileged place. In this calculation, it seems to be regarded as more serious for a man to have a smaller than ‘standard’ penis and/or no erectile function than for a woman to be infertile, since her ‘femininity’ does not appear to be threatened. In all cases, ‘simple’ or ‘difficult’, it can be seen that sex emerges as a ‘medico-diagnostic category’ (Machado 2005a) and that there is a concern with removing, as much as possible, or at least attenuating the ‘male traits’ identified in a ‘female body’ and vice versa.
Terms such as ‘intersexual states’, ‘incompletely formed genitalia’, ‘micropenis’, ‘hypertrophied clitoris’ and ‘ambiguity’ emerge as discursive categories that produce concrete normative effects on bodies, the most obvious being surgical intervention. The medical system, supported by psychological knowledge, thus constructs a narrative of the intersex body, constructing intersexuality as a difference that should be rendered invisible. This construction of meaning has significant consequences for the lives of intersex people and those around them.
The relationship between medicine and intersexuality puts into play two main regulatory and normalising processes: (1) ways of ‘looking at the body’ (through physical examination, for example, but also through techniques capable of investigating its ‘invisible materiality’, including chromosomes, genes, stages of embryological development and molecules); and (2) ways of ‘measuring the body’, using scales that seek to classify by means of a ‘taxonomy of exclusion’, where decisions specify that measures should fall within the mutually exclusive categories of male or female. Within this logic, it can be said that it is necessary to have a ‘sufficiently large’ penis to be seen as a ‘true’, ‘complete’ man, and a ‘sufficiently small’ clitoris to be seen as a ‘true’, ‘complete’ woman. In this context, the clitoris defined as ‘hypertrophied’ and the ‘micropenis’ become both a social and a health problem.
Recent advances in genetics and molecular biology have led to these fields being accorded more importance in the decision-making context, and the role of molecular biology in the medical management of intersexuality deserves a separate, more detailed discussion, especially after the publication of the ‘Chicago Consensus’, where the valorisation of genetics and molecular biology became quite clear (Lee et al. 2006). At this point, I want to highlight the fact that, with the development of genetic and molecular biology technology, it is not merely by means of discourse that the truth about the subject is extracted, but also through other mechanisms which, in the final analysis, do not depend on the subject. The entire body thereby ‘confesses’ its sex in each molecule, in each genetic sequence, examined and translated in letters and numbers such as DSD, 46XX, 46XY, SRY, SOX9, WT1 and so on. In this context, what I have called the ‘sex code’ (Machado 2008) emerges, under the linguistic and cognitive domain of the new genetics and molecular biology. The sex code constitutes another truth about the subject, one that is revealed through the body at the microscopic and molecular level.
In the course of the bodily ‘regulations’ and ‘corrections’ to which intersex children are subjected, one constant feature is the insufficiency of a model based on dichotomous sexual categories. The insufficiency of the binary sex operator is revealed not only through the process of the ‘construction’ of a sex by means of medical intervention, but also in the need to reaffirm it, either by means of further interventions (hormonal, surgical and/or psychotherapeutic) or other forms of social regulation, such as the family (Machado 2006). Constant effort is exerted to adapt intersex bodies to certain social expectations, such as fertility, potential for penetrative heterosexual sex and penis or clitoris size, as stated earlier. In this way, the normalising and regulatory processes put in place by medicine seek to ‘find the sex’ – male or female – in the body of the intersex child and at the same time are based on certain markers of ‘wellbeing’ and ‘health’ – be they physical and/or psychosocial – in the name of which medical interventions, such as surgery, are justified.
The term ‘bioethics’ was first used in 1927 in an article by Fritz Jahr published in the German magazine Kosmos (Goldim 2006). Currently, and in a broad sense, bioethics can be considered as a field that seeks to deal in an interdisciplinary manner with the dilemmas raised in the area of health and biomedical research. As the term itself suggests, discussions related to this field of knowledge and action invariably presuppose a certain notion of bios (life) in relation to which an ‘ethics’ can be applied or defended. Feminist-inspired bioethics, which took shape in the 1990s, offers a trenchant critique of certain universalising tendencies within the discipline, opposing the use of universal principles decontextualised and disconnected from factors such as gender, social and cultural belonging (Diniz and Guilhem 2000).
Approached from a human rights perspective, sexuality first emerges in these debates within the context of reproductive rights but extends to the formulation of the idea of sexual rights (Rios 2006). This intersection between the spheres of rights and health, although important in many aspects and historical, political and social contexts, has problematic consequences in a number of fields (Corrêa and Ávila 2003), especially when dealing with issues beyond the scope of ‘health’, including issues related to intersexuality.
Decisions involving the management of intersex children are normally relegated to the sphere of bioethics and are neither immediately nor necessarily discussed in terms of the perspective of sexual rights as human rights. Among other reasons, this is due to the fact that bioethics has a direct commitment to the field of ‘health’ and intersexuality is frequently seen as an issue exclusive to this field.
One result of the presupposition that intersexuality is an exclusively medical issue is that, as Maffía and Cabral (2003) indicate, intervention techniques end up being problematised only in the sense of tools to be perfected. The difficulties or bodily consequences they cause are therefore seen as being related to ‘the state of the technique’, more or less ‘sophisticated’ at a given historical moment, rather than being seen in terms of the intervention itself. In this sense, debate tends to cover up the issue of whether or not intervention is even necessary.
In the context where I carried out fieldwork, it was not seen as inappropriate to submit the intersex body to interventions, to cuts and stitches, with the aim of ‘correcting’ it and registering the individual within a certain ‘sociocultural intelligibility’. At the same time, however, it is the story of an intersex body that is cut, stitched and, sometimes, masked (Cabral 2006). The point at which an attempt is made to hide intersexuality as a possible corporality is also the point at which a body to be corrected appears, circumscribed by a medical language. This discourse contains both the promise of a cure, of the erasure of the signs of a particular sexual conformation and, also, the hope of instituting an expected ‘coherence’ between the assigned gender and the ‘corrected’ anatomy (Machado 2005b), with its implied heteronormative, homophobic and transphobic sociocultural traits.
In the context of medical decision making, debates about the ‘technical’ issues involved in the interventions thereby end up obscuring reflection on human rights. Cabral (2004) highlights a second problematic question that emerges in the sphere of sexual and reproductive rights: that of the presupposition of ‘sexual difference’ on which a certain notion of sexual citizenship is based. The intersex political movement and ethical and theoretical discussions around intersexuality also raise a challenge for the field of sexual rights as human rights and for bioethics, as they question the whole definition of humanity from which they spring: a humanity in which cultural diversity is established upon the presupposed truth of a two-sex division of the world. In this way, even though gender can be perceived as multiple, it ends up being anchored in two, and only two, sexes.
In this context, surgical intervention is generally regarded, by doctors as well as by many relatives of intersex people, as ‘unavoidable’, ‘humanitarian’ and ‘humanising’, since, from this perspective, the intervention seeks to register the body into what Cabral (2004) describes as a ‘sexed subjectivity’. The fieldwork vignette with which I began this chapter clearly illustrates this point in the concern expressed by the medical team that the child – in this case, ‘Carolina’s newborn’ – should not live in society ‘without a defined sex’. Here, ‘sex’ appears explicitly as that which allows access to social intelligibility and even to juridical existence (for instance, to obtain a baby’s birth certificate, the parents must present a document from the hospital informing whether the sex is male or female).
The discussion in this chapter has raised important questions when thinking about sexual rights as human rights. It also raises questions as to what constitutes ‘health’. As regards intersexuality, in particular, this requires us to take into account the perceptions, definitions and demands of families, intersex people, political movements and other actors involved in decision making and in the comprehension of the meaning of ‘health’. All these factors extend well beyond the realms of strictly medical and psychological criteria for decision making, challenging them and increasing their complexity.
By resignifying the polarised dichotomy of the categories of male and female, debate around intersexuality also points to the discussions of nature and nurture (so dear to anthropology) within the context of technological innovations and technical interventions on the body. This raises new questions concerning the relationship between sex and gender, in as much as it is the normative dichotomy of gender that shapes attempts to place bodies neatly in one of two, and only two, sexes.
Finally, there are issues related to biotechnology and the concrete, material effects of scientific discourse on the body. Specifically, and in relation to the medical and psychological management of intersex bodies, it is important to stress, to borrow from Suzanne Kessler (1998), that there are no ‘neutral interventions’, but rather the production of cultural effects. On the basis of – and beyond – the problematisations presented here, it is necessary to embrace the challenge of constructing a broader approach to sexual and reproductive rights as human rights, one which is not restricted to the notion of health as the locus for normative productions regarding bodies.
1 My thanks to Mauro Cabral for his invaluable commentaries and our stimulating discussions and to Daniela Riva Knauth for her enduring support and assistance in relation to this study.
2 August 2006 saw the publication of the Consensus Statement on Management of Intersex Disorders, also known as the ‘Chicago Consensus’, a medical consensus which suggests the use of the term disorders of sex development (DSD) in place of ‘intersex’ or ‘intersexual states’ (Lee et al. 2006).
Cabral, M. (2004) ‘Ciudadanía (Trans)sexual’, available at www.ciudadaniasexual.org/publicaciones/ganadores.htm (accessed January 2005).
Cabral, M. (2006) ‘En Estado de Excepción: Intersexualidad e Intervenciones Sociomédicas’, in Cáceres, C. F., Careaga, G., Frasca, T. and Pecheny, M. (eds) Sexualidad, Estigma y Derechos Humanos. Desafíos para el Acceso a la Salud en América Latina, Lima: FASPA/UPCH.
Cabral, M. and Benzur, G. (2005) ‘Cuando digo Intersex. Un Diálogo Introductorio a la Intersexualidad’, Cadernos PAGU, 24: 283–304.
Corrêa, S. and Ávila, M. B. (2003) ‘Direitos Sexuais e Reprodutivos. Pauta Global e Percursos Brasileiros’. in Berquó, E. (ed.) Sexo & Vida: Panorama da Saúde Reprodutiva no Brasil’, Campinas: Editora Unicamp.
Diniz, D. and Guilhem, D. (2000) ‘Feminismo, Bioética e Vulnerabilidade’, Revista Estudos Feministas, 8 (1): 237–44.
Goldim, J. R. (2006) ‘Biotica: Origens e Complexidade’, Revista HCPA, 26 (2): 86–92.
Kessler, S. (1998) Lessons from the Intersexed, New Brunswick, NJ: Rutgers University Press.
Lee, P. A., Houk, C. P., Ahmed, S. F., Hughes, I. A. et al. (2006) ‘Consensus Statement on Management of Intersex Disorders’, Pediatrics, 118: e488-e500.
Machado, P. S. (2005a) ‘ “Quimeras” da Ciência: A Perspectiva de Profissionais da Saúde em Casos de Intersexo’, Revista Brasileira de Ciéncias Sociais, 59: 67–80.
Machado, P. S. (2005b) ‘O Sexo dos Anjos: O Olhar Sobre a Anatomia e a Produçãoo do Sexo (como se Fosse) Natural’, Cadernos PAGU, 24: 249–81.
Machado, P. S. (2006) ‘No Fio da Navalha: Reflexões em Torno da Interface entre Intersexualidade, (Bio)Ética e Direitos Humanos’, in Grossi, M. P., Heilborn, M. L. and Machado, L. Z. (eds) Antropologia e Direitos Humanos 4, Blumenau: Nova Letra.
Machado, P. S. (2008) ‘Intersexualidade e o “Consenso de Chicago”: As Vicissitudes da Nomenclatura e suas Implicações Regulatórias’, Revista Brasileira de Ciências Sociais, 23: 109–24.
Maffía, D. and Cabral, M. (2003) ‘Los Sexos ¿Son o se Hacen?’, in Maffía, D. (ed.) Sexualidades Migrantes. Género y Transgénero, Buenos Aires: Feminaria.
Rios, R. R. (2006) ‘Para um Direito Democrático da Sexualidade’, Horizontes Antropológicos, 26: 71–100.