Culture, Health & Sexuality

Vol. 11, No. 3, April 2009, 237250

Intersexuality and sexual rights in southern Brazil

Paula Machado*
Nucleo de Pesquisa em Antropologia do Corpo e da Saude (NUPACS), Federal University of
Rio Grande do Sul, Brazil
This paper reports of the socio-medical management of intersexuality in a
teaching hospital in southern Brazil. Findings reveal that the search for sex in
the body treats sex as a medical-diagnostic category constructed during decisionmaking negotiations. In the course of the various bodily regulations and
corrections imposed, the insufficiency of a model in which categories are based
around a sexual dichotomy is revealed. By questioning this dichotomy, it is
possible to examine theoretical and ethical limits circumscribing the field of
bioethics and the notion of sexual rights as human rights. The paper also explores
the tensions that can arise from the application of sexual rights to health issues in
general, and the medical sphere in particular.

Resume
Cet article rend compte de la gestion sociomedicale de lintersexualite dans un
hopital universitaire du Sud du Bresil. Les resultats reve`lent que la determination
du sexe dans le corps aborde le sexe comme une categorie medicodiagnostique qui se construit au cours des negociations menant aux prises de
decision. Au travers des diverses regulations et corrections corporelles
imposees, linsuffisance dun mode`le dans lequel les categories se fondent sur une
dichotomie sexuelle est revelee. En remettant en cause cette dichotomie, il est
possible dexaminer les limites theoriques et ethiques qui circonscrivent le champ
de la bioethique et la notion des droits sexuels en tant que droits humains.
Larticle explore aussi les tensions pouvant emerger de lapplication des droits
sexuels aux questions de sante en general, et en particulier a` la sphe`re medicale.

Resumen
En este artculo describimos la gestion sociomedica de la intersexualidad en un
hospital docente al sur de Brasil. Los resultados indican que en la busqueda de
sexo en el cuerpo, el sexo se clasifica como una categora medico-diagnostica
que se interpreta al negociar la toma de decisiones. En el curso de varias
regulaciones y correcciones corporales que se imponen, se observa la
deficiencia de un modelo en el que las categoras se basan en una dicotoma
sexual. Al cuestionarnos la dicotoma, es posible analizar los lmites teoricos y
eticos que definen el campo de la bioetica y la nocion de derechos sexuales como
To coincide with the 6th IASSCS Conference (2729 June 2007) organized at Cayetano
Heredia University in Lima, Peru, a competition was held for the best paper presented by a
new researcher. In this issue of Culture, Health and Sexuality, we have the pleasure of
publishing the paper awarded the first prize.
*Paula Machado, NUPACS, Universidade Federal do Rio Grande do Sul, Porto Alegre,
Brazil. Email: paulasandrine@yahoo.com.br
ISSN 1369-1058 print/ISSN 1464-5351 online
# 2009 Taylor & Francis
DOI: 10.1080/13691050802233454
http://www.informaworld.com

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P. Machado
derechos humanos. En este ensayo tambien evaluamos las tensiones que pueden
surgir en la aplicacion de los derechos sexuales en cuestiones sanitarias en general
y especialmente en el entorno medico.
Keywords: intersexuality; sexual rights; human rights; bioethics; Brazil

Introduction
It was in the early stages of fieldwork at the hospital when a meeting was called for
medical staff from different specialties 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 Carolinas newborn.1 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,3 a geneticist, a genetics intern, a paediatric intern, a neonatologist, two
medical students and myself.
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.4 We cant say that it is Y, he stated, as none of the markers are indicative
of Y. The endocrinologist, on the other hand, pointed out that the gonads were
producing testosterone. The discussion continued and various opinions were
offered regarding the childs 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 teams concern was how best
to intervene, which required the unequivocal definition of the babys sex. The
doctors 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 specialties. Second, the vignette shows that sex
often becomes an all-encompassing category, including everything that defines a
person and makes them, in a sense, recognizable. Considering Foucaults analysis
(1988), it can be presumed that the urgency in determining unequivocal ways of
defining sex exists because, in western society, the truth about a subject is strongly
related to sexuality: a person cannot even exist as a legal entity without this
definition. On the basis of the vignette, we can add that it is difficult not just for
doctors, but for society at large the world to imagine an existence outside the
masculine/feminine sexual dichotomy. As Judith Butler (2004) reminds us, what
lives, and what bodies can be lived, outside these parameters?

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In relation to the two problems indicated above, this paper analyses a number of
issues relevant to the socio-medical management of intersexuality in the context of a
hospital in southern Brazil. 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, in practice, the divisions are not stable and each level
continually articulates with and involves the others.
Findings reported on here come from a qualitative, socio-anthropological study
using ethnographic methodology.5 The principal investigation techniques were
participant observation, informal interviews and semi-structured interviews. The
ethical and methodological aspects of the research proposal were evaluated and
approved by an Ethics and Research Committee, including the Statement of
Informed Consent, which is in accordance with national and international guidelines
and standards and, specifically, Brazilian National Health Council Resolutions 196/
96 and complementary statements.
Participant observation and informal interviews were carried out at a teaching
hospital in the state of Rio Grande do Sul, Brazil: a medical institution equipped
with some of the latest medical technologies (hereafter referred to as RS
Hospital). Data was collected in the paediatric surgery/urology and paediatric
endocrinology outpatient clinics, at meetings of relevant specialist teams and in
discussions with health professional of intersex cases with less straightforward
medical solutions.
Semi-structured interviews were conducted with: (1) relatives of medically
diagnosed intersex people under treatment by health professionals at the study
hospital; (2) relatives of children diagnosed during the course of the study; (3) young
people who had already undergone genital correction surgery and/or hormonal
treatment; and (4) health professionals from the hospital involved in decision making
and treatment regarding intersexuality: these included paediatric endocrinologists,
paediatric surgeons, geneticists, paediatricians 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, nor 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 RS
Hospital rarely used the term intersex amongst themselves and, as far as I could
gather, never used it during consultation with intersex children or young people and
their families.6 While, in a general sense, the term ambiguous genitalia was seen by
them as inadequate (because it does not adequately describe all intersexual states
and also because it refers to the idea of ambiguity), the term intersex was also
regarded as problematic. Nevertheless, I realised that in the course of their everyday
discussions the medical staff used the term ambiguous genitalia amongst themselves
when referring to certain conditions that they defined as intersex, though they
stressed the importance of not doing so in front of the families, preferring the term
incompletely formed genitalia.

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I therefore use the terms intersex and intersexuality as ethical categories, that is
to say, as reflexive choices of the researcher rather than as a self-identified categories
or ones commonly used by the people who participated in the study. I opted for these
terms because they refer both to developments in the health and biological sciences
and to political discussion, where they have been appropriated by activists engaged
in the struggle to end early surgical correction of genitals seen as being
ambiguous.7
I propose to use the term intersex as defined by the 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 here 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.
I begin my analyses and reflections by describing key issues involved in the sociomedical management of intersexuality in the study hospital. I describe the way in
which the search for the sex in the body takes place and how the increasing
importance given to molecular biology is articulated within the context of the
decisions regarding the childs sex. Finally, I seek to identify how this discussion
relates to the broader debate regarding sexual rights as human rights. In this section,
I deal with tensions involving the application of sexual rights when dealing with
issues directly connected with the field of health in general and the medical sphere in
particular.
Hide and seek: from the search for the sex to the materialisation of gender
As I have described in previous articles (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. As I observed, the person who normally
receives the child and performs the initial evaluation is the neonatologist or
paediatrician, either at RS Hospital or some other hospital in the state of Rio
Grande do Sul. If the child in question is not born at the RS Hospital, it will
normally be sent there (or to one of the other reference hospitals in the state), where
the investigative process will begin. If the child is born at RS Hospital, it is common
for the neonatologist to request consultation with professionals from the other
medical teams (medical genetics, endocrinology and paediatric surgery). In some
cases, the hospitals Bioethics Committee may also be consulted.
Thus, the first clue that something should be investigated results from the
physical examination. In general, all the medical staff involved in the case will, at
some moment, carry out a physical examination. In this practice, the gaze or
rather, a highly trained gaze is the starting point for an accurate diagnosis. Beyond
this examination, certain external causes are normally investigated, including the
use of hormones by the mother during pregnancy. At the same time, examination of
the interior of the body begins, through imaging (such as abdominal ultrasound and
genitography); endocrinological evaluation (to determine levels of, for example,

Culture, Health & Sexuality 241

testosterone, oestrogen, salt and potassium); and genetic evaluation to identify the
karyotype 46XX, 46XY, 45XO, 47XXY, among others and other characteristics
at the molecular level, such as possible genetic mutations.
During this process, the centrality of looking reappears as an element for
evaluating the best form of intervention. The surgeons and endocrinologists 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
well-being. 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.
Thus, from a medical perspective, there are a number of psychological,
endocrinological, genetic and surgical criteria central to the decision-making
process. The Consensus Statement on Management of Intersex Disorders (Lee et al.
2006), which represents the latest consensus in relation to the management of
intersexuality, clearly indicates that it is inadequate to speak of a single,
homogeneous protocol for all cases because of the large range of findings and
diagnoses involved. There is, therefore, no actual protocol but, rather, recommended practices for specific cases.
By analysing 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 babys sex is easily discernible and/or that intervention is
possible. On the basis of my observations and interviews, I suggest that 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. Examples of cases considered simpler include those diagnosed,
according to the medical language, as Congenital Adrenal Hyperplasia (CAH) and
Complete Androgen Insensitivity Syndrome (CAIS).
The cases classified as CAH in children with 46XX karyotype are not only the
most frequent (both as described in the literature and as observed during fieldwork
for the present study), but are also those regarded by the doctors as most
straightforward with regard to sex assignation and choice of treatment. In children
with 46XX karyotype, CAH can lead to an increase in the size of external genital
organs at birth or thereafter (Fausto-Sterling 2000). Normally, the child will have
reproductively functional uterus and ovaries. In such cases, there is 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
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

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woman (or girl) with uterus and ovaries, the possibility of fertility and the
possibility of reconstruction of a vagina by surgical means.
While cases of CAH in people with 46XX karyotype comprise the majority of
simple cases, these cases can be controversial in some situations, especially when the
diagnosis is late (that is, after approximately three years of age) and/or when there is
parental resistance to the medical evaluation. One such situation described by one of
the doctors from RS Hospital is illustrative of these possible controversies.
As this doctor explained, the parents in question already had three girls and were
very keen to have a boy. When the child was born in a small town in southern Brazil,
the doctors at the local hospital announced that it had a uro-genital abnormality,
which was not further investigated. The child then arrived at the RS Hospital at the
age of two and a half, dressed as a boy and, according to what the parents told to
the doctor, with an ultrasound demonstrating abnormalities. The parents wanted the
medical professionals to remove that thing shown in the ultrasound. According to the
doctor, the ultrasound showed that the thing to which the parents referred was a
uterus and ovaries. After investigation, it was concluded that the child was a girl with
CAH and ambiguous genitalia. The team saw that the child was a girl with entirely
female potential. The family was then informed that the child had incompletely
formed genitalia, and the hospital team from genetics, endocrinology, psychology,
paediatrics and surgery met to reach a decision. They concluded that they were
dealing with a limit case because of the age, but that reassignation, that is, female
assignation, was nonetheless the most appropriate response. As the doctor explained:
In fact, if we were to keep the child as male, as the parents wished, we would have to
remove the two ovaries, the two fallopian tubes and the uterus. We would have to add
prosthetic testicles later. This phallus would not respond to hormonal stimulation,
which would have to be given exogenously for this child, and it would have a very
small penis, right To transform the clitoris into a penis it was small, it would be
difficult to [author: To have an erection?] No, it would erect, but [author: It would
be difficult to construct?] No In fact it would be difficult to construct, but we could
place the urethra closer to the tip, but maybe it would be, in the future, a man with a
small penis, and maybe with difficulty in having sex and sterile.

Other cases often classified as simple to resolve were those described by the doctors
as CAIS, which refers to children born with karyotype 46XY 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 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: 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 above. This category normally includes Partial

Culture, Health & Sexuality 243

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 described above
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 put 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, categorizing sex in an either/or framework becomes more
difficult.
In order to reach decisions regarding intersexuality, there is therefore a complex
set of factors to be taken into account which include 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
socio-cultural 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.

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The relationship between medicine and intersexuality puts into play two main
regulatory and normalising processes: (1) the way 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) the way 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 problem and a
health problem.
Currently, advances in genetics and molecular biology are gaining increasing
emphasis in the decision making context. Even though, during the period of the field
work, the technological resources for molecular biology were somewhat restricted at
RS Hospital,8 the new diagnostic resources shaped by these advances were gaining
increasing prominence as discourses of truth in the search for authentic sex. The
analysis of 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 is
quite clear (Lee et al. 2006). At this point, I want merely 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 as analysed by
Foucault (1988) in relation to techniques of confession, which shift from the religious
sphere to that of medicine 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.
If, on the one hand, this increasing production of knowledge about sexual
determination and differentiation clarifies previously unknown issues, on the other
hand it generates new uncertainties and questions. Moreover, as I indicated in
previous articles (Machado 2005b, 2006), medical solutions and definitions are often
not only different from those put in place by the families of intersex children, but
also not enough to meet their demands. 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 mutually exclusive dichotomic 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 by means of other forms of social regulation, such as
the family (Machado 2006). It is clear that 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 above. In this way, the
normalising and regulatory processes put in place by medicine seek to find the sex
masculine or feminine in the body of the intersex child and at the same time are
based on certain markers of well-being and health be they physical and/or
psychosocial in the name of which medical interventions, such as surgery, are
justified.

Culture, Health & Sexuality 245

A difficult knot to untie: health, bioethics and sexual rights
Central to my research on intersexuality, and negotiations surrounding its clinical,
surgical and psychotherapeutic management, is the discussion about bioethics from
a perspective that regards sexual rights as human rights. One fundamental point in
this debate is to question both the definition of human based on sexual binarism as
well as the concrete actions enacted upon bodies in the effort to ensure the stability
of and conformity to this dichotomic definition of sexed humanity (Butler 2004,
2005, Cabral 2006a). As indicated above, the surgeries and corrective interventions
applied to intersex bodies offer concrete, material examples that demonstrate the
effective action of sociocultural norms.
The term bioethics was first used in 1927 in an article by Fritz Jahr published in
the German magazine Kosmos; the term offered a comprehensive definition,
concerning not only human beings but all living beings (Goldim 2006, p. 86). In the
1970s there was a consolidation of the discipline in the North American context
(Diniz 2006). It should be noted that the definition of bioethics underwent a series
of reformulations and new appropriations during this time. 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, offer a trenchant
critique of certain universalising tendencies defended within the theory and practice
of the discipline, opposing the use of universal principles decontextualised and
disconnected from factors such as gender, social and cultural belonging (Diniz and
Guilhem 2000).9 Nonetheless, even though the critiques and analyses of feministinspired bioethics have increasingly demonstrated the need to take diversity into
account, they do not thoroughly examine the variations of the sexed body to which
they are applied. In this sense, (bio)ethics continues to focus on the body as
incorporated into the binary sexual matrix.
Approached from a human rights perspective, sexuality first arises in these
debates with the notion of reproductive rights and extends to the formulation of the
idea of sexual rights (Rios 2006). It is important to highlight the fact that the use of
the term reproductive rights is used not only in the Brazilian context but also on the
global scale as a refinement of the notion of Integral Womens Health (Correa and
vila 2003). Given that the concept of sexual rights is closely connected to that of
A
reproductive rights, it was also strongly marked by the idea of health in this case,
sexual health. This intersection of the spheres of rights and health, although
important and even decisive in many aspects and historical, political and social
vila
contexts, leads to problematic consequences in a number of fields (Correa and A
2003), especially when it attempts to deal with issues beyond the scope of health,
including, as will be shown, some 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.10 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. It should also
be noted that, as a regulatory practice within the medical sphere, bioethics has a

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P. Machado

normative potential that becomes part of the decisions that it is meant to facilitate,
including those involving intersex children and young people.
One result of the presupposition that intersexuality is an exclusively medical issue
is that, as Maffa 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, the debate tends to cover
up the issue of whether or not intervention is even necessary.
In the context of where I carried out field work and I believe this is not restricted to
that specific hospital 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 2006a).
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 expectation of instituting the expected
coherence between the assigned gender and the corrected anatomy (Machado 2005b),
with its implied heteronormative, homophobic and transphobic sociocultural traits.
At this point, I see an urgent issue to be dealt with by bioethics, especially if
considered from the perspective of sexual rights as human rights. This is the problem
of the construction of intersexuality as a bodily, ethical and political difference by
the medical and legal systems, as indicated by Cabral (2006b).11 Cabral defends the
view that intersex people are placed in a state of exception (Cabral 2006a, p. 85).
According to him, exception in relation to the norm of sexual dimorphism, to the
production of socially and culturally recognisable ethical and political subjectivities,
as well as through the ethical difference constructed in the course of socio-medical
decisions and practices carried out on the intersex body.
Intersexuality is therefore an extremely relevant point from which to discuss
bioethics and the field of sexual rights as human rights. Intersexuality is not regarded as
a public health problem, such as the HIV epidemic, nor does it affect a vast number of
people (one in every 2000 or more births, depending on the criteria used and the
conditions included, compared to, for example, more than seven in every hundred
people affected by diabetes in Brazil). Nonetheless, discussions and analyses regarding
intersexuality relocate the debate in the context of sexual rights and bioethics, especially
because they involve a type of knowledge (and of knowing) that generates displacements in our comprehension of conventional notions of gender, sex, sexuality and the
human, with consequences for other subjects of rights.
In analysing some of the consequences of the new reproductive technologies for
kinship, Strathern (1995) highlights the fact that knowledge produces this effect of
displacement. In speaking of displacement rather than change, she seeks to show
how knowledge, and the act of making it explicit, can lead to rearrangements in the
comprehension and treatment of facts and, therefore, in social relations. According
to Strathern, this knowledge brings greater uncertainty to the scientists, doctors and
others who use it.
One of the effects of displacement is therefore to make the implicit explicit
(Strathern 1995, p. 347), which means that one form of knowledge is juxtaposed with

Culture, Health & Sexuality 247

another, leading to new arrangements. As the author indicates, when the implicit is
made explicit, conceptions change, along with ways of comprehending and seeing.
Displacement becomes radical (Strathern, 1995, p. 347). Stratherns argument of a
rearrangement of conceptual domains also suggests an examination of the practical
consequences generated by this new knowledge. What is it that changes? What social
or cultural re-orderings result? In the case of intersexuality, if this displacement is
really possible, when and where can we perceive, provoke or incite it?
As I indicated in a previous article (Machado 2006), certain questions can be
raised in relation to the idea of sexual rights on the basis of the problematisation of
intersexuality. The first is related to the dangerous slippage that can occur between
ideas of rights and of health, the latter being characterised in our society by a
series of regulatory measures. This slippage is expressed in the fact that when the
issue is intersexuality the discussion of sexual rights as human rights normally
appears subsumed within concerns of a bioethical health nature, as I have already
analysed.
In the more specific context of medical decisions, it can also be seen that debates
around the technical issues involved in the interventions end up obscuring any
reflection on human rights. The connections between rights and health also lead to a
paradox, which is both problematic and inevitable, since it is based on this perspective
of health as a right: if, on the one hand, there is an intervention on sexual and
reproductive bodies, on the other hand, there is a need to ensure individuals autonomy
over their own bodies (Machado 2006, p. 47).
Cabral (2004) highlights a second problematic question that could emerge in the
sphere of sexual and reproductive rights: that of the presupposition of sexual
difference upon which a certain notion of sexual citizenship is based. Intersex political
movement and the 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 where
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 nonetheless 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 and, I would say, as utterly
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 paper clearly illustrates this point when we
consider the great concern on the part of the medical team that the child in this
case, Carolinas newborn should not live in society without a defined sex.
Sex appears explicitly as that which allows access to social intelligibility and
even to juridical existence (for instance, to obtain a babys birth certificate, the
parents must present a document from the hospital informing whether the sex is male
or female). As Foucault (1988) reminds us, sex is at the centre of a constructed
apparatus that views it as an object of truth, a truth that speaks about the subject
and without which the subject lacks certain recognition. Analysed in this way,
another common argument in favour of early surgery that the interventions are in
the best interests of the child is entirely coherent with a conception of human
rights that understands humanity on the basis of sexual difference perceived between
the (two) sexes.12

248

P. Machado

Some final considerations

On the basis of these analyses, I have sought to demonstrate that neither the sphere
of bioethics, nor that of sexual rights as human rights effectively questions the binary
system of sex which underpins medical decisions regarding clinical, surgical and
psychotherapeutic interventions on intersex bodies. To the degree that we review the
concept of human being that presupposes an anatomical ideal, not only do we
subvert the pathologising logic used to comprehend intersexuality, but we also raise
questions that problematise the application of norms to all bodies. For exactly this
reason, I believe that issues surrounding intersexuality raise questions about many
political movements that are based on a politics of identity and which are therefore
obliged to face some of the essentialisms they themselves support.
According to Correa (2006, pp. 116117), the question who is the who in
sexual rights? leads to a critique of the discussions surrounding identity, political
representation and juridical norms. As stated by Correa (2006, p. 118), working with
the concept of who developed by Hannah Arendt:
The differentiated appearance of the who is conjugated with the recognition of a
common humanity that both underlies and is mediated by differences. (my translation)

All of these discussions indicate possible ways of thinking about sexual rights as
human rights, but beyond a univocal and unequivocal production of the human, and
as something that should go beyond identity politics. It is also necessary, however, to
review the notion of health on which bioethics and the human rights discourse are
based, which is essentially based on medico-scientific conceptions and definitions.
The health field should be broadened so as to include other voices and gazes, not
merely those of health professionals.
As regards intersexuality specifically, this means, for example, considering the
perceptions, definitions and demands of the families, intersex people, social
movements and other actors involved as crucial factors in the decisions and in the
comprehension of the meaning of health. All of these factors exceed the strictly
medical and psychological criteria for decision making, challenging them and
making them more complex.
By re-signifying the polarised dichotomy of the categories of male and female,
the debate around intersexuality also points to the discussions of nature and nurture
(so dear to anthropology) in the context of technological innovations and technical
interventions on the body. This debate raises new questions and reflections on the
relationship between sex and gender, in as much as it is the normative dichotomy of
gender that shapes the attempts to place bodies neatly in one of two, and only two,
sexes.
Finally, there are certain issues related to biotechnology and the concrete,
material effects of scientific discourse on the body that arise in studies of sexuality,
leading to an increasing interest in the complex interconnections between scientific
and technical production and its social, cultural and bodily implications. Specifically
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 and reflections presented here, it is therefore
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.

Culture, Health & Sexuality 249

Acknowledgements
My great thanks to Mauro Cabral for his valuable commentaries and our stimulating
discussions and to Daniela Riva Knauth for her constant support and assistance in relation to
this study.

Notes
1.

All names of people and places have been changed to preserve anonymity. Medical
professionals are designated according to specialty, with genders assigned randomly.
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).
3. In Brazil, interns are recently graduated doctors carrying out a period of specialisation at
the hospital, in, for example, surgery, paediatrics, cardiology, and so on.
4. The karyotype is defined as the chromosomal set of a species. The expressions 46XX and
46XY are a biomedical convention, in which 46 indicates the total number of
chromosomes of the individual and XX or XY refer to the so-called sex
chromosomes, being one of the pairs of that set.
5. This study is part of broader doctoral thesis research in social anthropology at the
Universidade Federal do Rio Grande do Sul (Machado 2008).
6. It should be pointed out that the material used in this study is the result of field work
undertaken before the publication of the Chicago Consensus, with its proposal for review
of the intersex/intersexual states terminology for DSDs (Lee et al. 2006).
7. The first intersex activist group, the Intersex Society of North America (ISNA), appeared
in the USA in the 1990s. This group began to promote the use of the term DSD (without,
however, abandoning the term intersex). In fact, ISNA founder Cheryl Chase was one of
the 50 participants in the International Consensus Conference on Intersex who produced
the Chicago Consensus. Available from: http://www.isna.org [Accessed April 2007].
ISNA has recently closed its doors, but it has originated a new organization, called
Accord Alliance. Available from http://www.isna.org [Accessed May 2008].
8. For example, certain samples had to be sent to the state of Sao Paulo or out of the country
in order to be analysed, not because of a lack of human resources, but because of lack of
relevant technology.
9. For the so-called Principlist Bioethics, there are certain universal principles to be taken
into account in reaching a good decision: autonomy, justice, beneficence and nonmaleficence. See Beauchamp and Childress (1979).
10. It is important to stress that there are, however, certain tendencies within bioethics that
already incorporate a human rights perspective. See, for example, Diniz and Guilhem
(2000) and Diniz (2001).
11. Personal communication.
12. The argument based on the best interests of the child also appears in the data presented
by Elizabeth Zambrano et al. (2006), when dealing with the discourses for or against
families with homosexual parents.

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