Issue 38 2003
Rhetoric of the Medical Management
of Intersexed Children
New insights into "Disease", "Curing", "Illness"
By J. DAVID HESTER
 What happens when a child is born, and the attending physicians
look to declare, Its a boy! or Its a girl!, but cannot clearly decide?
What happens when a girl at 18 still has not reached menarche, and
after a bit of research, it is discovered that she has an XY chromosome
type? What causes a doctor or a parent to worry about a clitoris
that seems too large, or a penis that appears to be smaller than
usual? How do we as a society respond to the knowledge that not
all people are XY, or XX, but could have both, or neither? What
do we do when we hear about men with ovaries, or women with testicles?
 These intersexed individuals clearly do not conform to our
fundamental assumption that humans have two and only two sexes,
and that each particular body clearly conforms to one or the other
of these sexes, but not both. One possible response to this awareness
is to reassess the assumption of the binary sex paradigm. (Cf. Fausto-Sterling
2000a) In the face of the multiple factors that contribute to the
classification and identification of a sexed type, it would be reasonable
for us as a society to rethink and problematize the binary paradigm
and its self-evidential status institutionalized in our politics,
our laws, our practices as social beings.
 Another possible response, and indeed the typical response
is to enact a corporeal ethic upon the bodies of those who do not
conform, in order to require them to display the appropriate markings
and behaviors for one or the other sex category. (Cf. Meyer-Bahlburg
1993, 1998; American Academy of Pediatrics [AAP] RE 9958; Money,
Hampson and Hampson 1955; Money and Ehrhardt 1972) This is something
similar to, but also more than the imposition of gender categories,
(Butler 1990, 1993) because the very bodies of the intersexes are
under question. A body without a clearly determinable sex must
have one made for it: surgically, hormonally, behaviorally, socially.
If not, it is diseased (physically deficient or deviant), and as
such is ill (cannot be and will not be socially accepted/acceptable).
It requires curing (intervention) in order for it to heal (to become
acceptable again, to find a place in society). In cases of intersexuality,
what is naturally (I use this term wisely) present is represented
as somehow unnatural, and must be made more natural in order to
be recognized, understood, classified.
 In the last 100 years or more (Dreger 1998), the medical profession
has turned its powerful professional gaze upon what were once termed
hermaphrodites, now named intersexed, in an effort both to determine
and understand the underlying causes leading to this diagnosis,
as well as to develop a series of medical interventions in response
to them. In the United States, but also clearly throughout Europe
and to an increasing extent elsewhere in the world, surgical techniques
on genitalia and secondary sex characteristic areas of the body,
psychosocial research into gender identity and techniques of reinforcing
this identity, as well as the availability of hormone replacement/supplement
techniques provide for the feasibility of a technological response
and intervention in the life of an intersexed individual. This effort
can be extensive, and it can be profound. (AAP RE 9958) It operates
upon the presumption that intersexed individuals are deviations
from a particular norm of sex morphology, and is committed to the
belief that medicine can provide the tools whereby the symptoms,
if not yet the causes, can be managed so as to allow the intersexed
individual a sense of place in the binary sex system. (Cf. also
Rosenfield, Lucky and Allen 1980; Glassberg 1980)
 Since the foundation in 1993 of the Intersexed Society of North
America, there has been a growing public awareness about the experience
of intersexed patients who have undergone medical treatment. The
testimony of intersexed adults regarding their treatment as children
has brought to light a number of criticisms regarding such practices
as early surgical intervention and early gender assignment and the
means by which it is reinforced (Beh and Diamond 2000; Kipnis and
Diamond 1998), not to mention the extremely troubling reports of
nearly universal medical paternalism, deflection and deception.
(Cf. Dreger 1999; <www.isna.org>) As a result, a growing
number of voices have expressed concern about the success of particular
practices and the standards by which medical researchers have in
the past used to judge success of their interventions. (Fausto-Sterling
2000b; Draft Statement; Alizai et al. 1982; Creighton, Minto and
Steele 1998) Many have pointed out the lack of long-term follow-up
studies (Chase 1996; Kipnis and Diamond 1998; Creighton and Minto
2001; cf. however Migeon et al., 2002, and the on-going North America
Task Force on Intersexuality) and have thereby begun to question
whether a patient or parent of a patient, when presented with medical
options, can ever be said to be fully informed when giving their
consent. (Ford 2001) Even more troubling for medical practitioners,
some have begun questioning certain fundamental presumptions guiding
current medical treatment. (Reiner 1996; Holmse et al. 1992; Diamond
and Sigmundson 1997; more generally, see Diamond et al. 1996; Diamond
1965; contrast, however, Bradley et al. 1998) In particular, the
assumption of the psychosexual neutrality of children at birth,
first proposed by John Money (besides above, cf. also Money, Hampson
and Hampson 1957; Money 1994; Money Potter and Stoll 1969; Money
1975; Money et al. 1981; Money 1983), now of the Psychosocial Research
Unit of Johns Hopkins Medical Center, has come under fire, particularly
since the publication of the biography of David Reimer, the John/Jane
Doe patient whose case became the foundational proof for the success
of medicines intervention in cases of intersexuality. (Colapinto
 What has not come under question is the fundamental assumption
of the need for medical treatment in the first place. That is, what
has not come under question is the impetus informing the desire
to make the natural more natural. (Cf. Sedgwick 1990) Let us for
the moment accept the current strategies and efforts at reform and
postulate a situation where their criticisms are all successfully
met. Let us postulate a moment in time when:
 all vestiges of physician paternalism have been overcome, and
parents and patients are given full and complete explanations of
the particular conditions and circumstance facing the intersexed
child and/or adult;
 surgical standards have been agreed upon such that not just
aesthetic outcome and patient survivability standards are met, but
also post-surgical complications are at a minimum and patient experience
is included as a necessary aspect of determining success;
 the complex notion of gender identity is completely understood,
universally accepted, and patient outcomes are successful according
to these standards;
 several long-term studies from research centers from all over
the world offer us clear and unambiguous answers regarding best
 Let us grant this utopian vision whereby all criticisms raised
by current efforts at reform have been met. The question still
remains: Is it necessarily the case that an intersexed child under
the practices of these perfected guidelines can achieve healing
under its practices? Or are the underlying assumptions of the need
to intervene in these cases such, that the effort to bring the ambiguously
sexed child into conformity with the binary sex paradigm will be
undermined by the presumed pathology of the condition? More importantly,
how do these assumptions shape the practices of identification,
intervention and follow up? What takes place when a child is declared
intersexed and is forced to undergo a series of medical interventions,
ranging from possible surgery to counseling, from possible hormone
treatment to daily reinforcement of gender identity and role, in
order to bring him or her into conformity with the natural binary
 Current medical guidelines make use of rhetorical dynamics
that create a state where practices of the diagnosis of the "disease"
and the procedures used in "curing" lead the patient to
a state of "illness" wherein no "healing" can
ever be achieved. These practices are informed by an assumption
of what constitutes natural sex categories and characteristics,
and views medical intervention as part of an effort to render the
intersexed body more in conformity with nature. This assumption
is inextricably linked to these guidelines and their resultant practices,
such that the result would be the same no matter their possible
future reform: the intersexed patient is a boundary violation of
the binary sex ideology in constant need of surveillance and control.
It is the thesis of this article that under these circumstances,
healing can never take place for the intersexed patient.
The Current Medical Protocol
 In order to pursue our analysis, it is important to review
key practices and perspectives informing the current medical practices
undertaken in cases of intersexuality.
 The modern medical profession since the 19th century has codified
and reinforced the notion of the existence of two and only two genders,
and has institutionally sought to regulate bodies according to a
belief of "one body, one gender". (Dreger 1998, 79-109;
Fausto-Sterling 2000b, 1-44: 30-44) While recent studies have suggested
the as many as of 1.7 intersexed births per 100 (Blackless, et al.
2000, 151-166), it is the commitment to maintaining the socially
presumed standard of two discreet sex categories that drives the
medical intervention in these cases.
 If a body presents itself as ambiguous, i.e., as violating
these normative presumptions, the physician begins a series of tests
to determine the underlying condition. (Cf. Hutcheson and Snyder)
The process is conducted within a team framework (including, under
the best of circumstances, the original referring physician, a pediatric
endocrinologist, a pediatric urologist, a geneticist and possibly
a psychologist, psychiatrist or a psychoendocrinologist). (AAP RE
9958; Migeon 2001) The team seeks to ascertain the underlying condition
leading to genital ambiguity in an effort to identify the body's
"true" gender. It will then decide upon the gender assignment
and gender of rearing according to the two-sex model.
 Gender assignment is determined according to the following
guidelines: 1) "Genetic females should always be raised as
females, preserving reproductive potential, regardless of how severely
the patients are virilized." 2) "In the genetic male,
however, the gender of assignment is based on the infant's anatomy,
predominantly the size of the phallus." (Both quotes Donahoe
et al. 1991, 527; cf. also Riley and Wodehouse 1989, 569-571; Money
1975, 610; AAP RE 9958; Oberfield et al. 1989, 453-454; Hutcheson
and Snyder) It is not yet clear how these guidelines relate to the
processes of diagnoses that took place prior to assignment. Published
guidelines seem to concern themselves more with anatomical appearance
and function, than with exploring the relationship between a given
condition and eventual psychosocial adjustment. (Tiefer 1994, 363-377;
cf. also Reilly and Woodhouse 1989) This makes sense within the
model, since the assumption is that eventual gender identity acceptance
can be formed through reinforcements such as sex of rearing and
clear physiological signals. (Cf. however Reiner 1997, 1044-1045;
Hendricks 2000; van Seters and Slob 1988)
 During this time physicians generally counsel parents not
to assign a sex to the affected newborn, nor to name the child.
If asked, the parents are counseled to avoid gender pronouns when
referring to the child, using phrases like "our baby",
"our child", etc. It is also important to use neutral
terms such as baby, gonad and phallus instead of sex-specific terms
like boy or testes or ovaries and penis or clitoris. (Migeon 2001;
AAP RE9958) Only after the "true sex" has been chosen
and the parents told of the results of the investigation is the
baby given a name, the birth record filled out, and the surgeries
and/or other interventions scheduled. This communicative approach
to keep the baby in an unmarked, socially liminal zone is premised
upon the intention of the protocol to have all parties send clear
signals that will not undermine the certainty of the assignment.
 Indeed, the implementation of communicative practices is recommended
from the very beginning. The most important moment of communication
is seen as the initial consultation with the parents, wherein the
physicians are to approach them by stating that the child really
does have a gendered identity, but that the genitals and
gonads are incomplete, and the "true sex" of the child
has to be more clearly investigated. Accordingly, the physician
is directed to state that the gender of the child is not yet "finished",
and their procedures will help to "correct" and "complete"
this development. Integrity of the gender identity system and the
determination of the gender are thereby maintained in the hands
of the physicians, and consistency of this message plays a key role
in the assignment process.
 This fundamental commitment is the driving force behind all
future follow-up consultations, often resulting in extraordinary
paternalistic avoidance of candid and forthright communication with
the patient regarding her/his condition. "[A]ccurate patho-physiological
explanations are not appropriate and medical honesty at any price
is of no benefit to the patient." (Forest 1981) "Discretion"
became a fundamental aspect of the guidelines, since the guidelines
depended upon clear, congruent and consistent messages being sent
to the parents and the child so as not to create confusion. (Peris
1960: 156-166; Slijper et al. 1994, 10-11, 14; Lee and Mazur 1980,
156-163) Success of the adoption of the gender assignment is premised
upon the intersexed individual not knowing they are intersexed.
Truth telling within this protocol is seen as threatening its very
success, (Natarajan 1996) since it would mean informing the patient
that her/his gender was ever in question.
 In sum, the intersexed patient is identified as such only
after the physician is confused about the external phenotype, a
confusion premised upon an (institutional) commitment (since the
19th century) to a binary system of clearly differentiated gender/genital
markings. Commitment to this binary system is reinforced through
approaches taken by the physician, under guidance of the medical
protocol, that describe the patient as having a true but developmentally
incomplete sex which will be helped along by the intervention of
the physician. In order to maintain the clarity of the binary gender
system, gender assignment must be accompanied by consistent signals,
and the patient must never be aware of the possibility of ambiguity
The Rhetorics of Medical Management
 With this background in view, I wish to turn an analysis of
how notions of "disease", "illness", and curing
are constructed in the protocol through certain acts of naming,
disciplining, evading and constructing. For the purposes of this
paper, "illness" is not just the process of identifying
and diagnosing a medical condition for the sake of eliminating a
"diseased" or "unhealthy" state. It is, instead,
the whole plethora of relationships at work when patients, physicians,
technicians, families come together and isolate the patient as a
pathology, set the person apart in an effort to prevent social contagion.
 "Disease" is therefore just one aspect of "illness",
and to be pronounced "diseased" is a rhetorically performative
activity (label), based upon certain medical guidelines with greater
or lesser degree of risk, signifying a change in responsibilities
and activities at work between all the players.
 Let us consider more closely, building upon what we have already
discussed, the ways in which the ideas of disease, curing and illness
interact and intersect in the practices of physicians, parents and
patients with respect to the intersex(es).
 The Rhetoric of Disease: When is a newborn, an intersexed
newborn, in need of immediate clinical and surgical intervention?
A straightforward answer to this question has not been developed.
While several conditions have been identified as leading to intersexuality,
and while tests are available to discern the particular etiology
of a given condition, they are only performed after the physician
has already declared the child to be intersexed. It is only once
the physician declares the child's genitalia ambiguous that the
underlying condition is confirmed.
 This is, of course, typical, since the "art" of
diagnosis and treatment proceeds along similar lines: symptoms are
described or are witnessed, and the underlying condition for them
is identified by tests that help to confirm an initial diagnosis.
The question regarding the identification of intersexed children
as such, is what symptoms do physicians initially rely upon? How
does a physician first come to "recognize" the genitalia
 While scales of "normal" clitoral (Riley and Rosenbloom
1980; Oberfield et al. 1989; Sane and Pescovitz 1992) and penis
lengths (Flatau et al. 1975; Donahoe et al. 1991) for newborn children
have been developed, literature is replete with subjective phrases
such as "ambiguous genitalia", "expected size",
"appears small", "judged on the basis of...in relation
to the size of the patient", none of which are defined or specified
any further than this. (Kessler 1998, ) Of course, it may be that
in such cases the "ambiguity" would be "obvious"
to any observer. Nevertheless, this does beg the question of just
how "ambiguous" ambiguity is allowed to be before labeling
the child intersexed and commencing with the prescribed interventions.
One of the reasons for this murkiness is that there is no medical
standard of gender assignment and genital appearance that isn't
also entangled with cultural, and even personal, aesthetic notions
of how the genitals should "properly" look and function.
 It should therefore come as no surprise that expectations
on the part of physicians have a profound affect on their judgment.
For example, the presence of the phallus can outweigh all other
indicators in the initial gender assignment. (Cf. Kessler 1998,
44-46) Of course, this difficulty is related to whether one sees
a "small penis" or a "large clitoris". The problem
is, such a judgment is itself dependent upon preconceived notions
of how a "penis" or a "clitoris" is "supposed"
to look. A "penis" (even a severely hypospadic one) is
what a "boy" has, the gender of whom is what the physician
is supposed to be determining in the first place. A "clitoris"
is what a "girl" has, even if it is enlarged and accompanies
 In other words, the end determines the beginning. The gender
you assign the child determines how you will view the child's ambiguity,
and how you will proceed with the "necessary" corrections.
Once a physician decides the signs of ambiguity are "confused",
because the objects are not fulfilling their preordained and necessary
role of clear, male/female marking, the physician then goes on to
decide which of the two genders the genitals can measure up to fulfilling
best. If it is decided the phallus is "too small" to be
a boy, the child becomes a girl whose clitoris is "too big"
and in need of cliteroplastic correction. Same goes with a "girl"
whose fused labia and phallus are inappropriately sized/formed,
who is then "fixed" so she can later be allowed to procreate.
A hypospadic boy, on the other hand, must undergo phalloplastic
surgery so that he can later stand to pee. Clearly intersexuality
is not a medical issue, but has always been predominantly a cultural
issue that medicine has attempted to control by bringing to the
issue of gender identity its tools of medical management. (Cf. Dreger
 It does not seem to occur in the literature that the genitals
are just what they are and don't need fixing at all. It has recently
been argued that differences exhibited in the so-called gender-ambiguous
body are well within the range of statistical probability of variation,
and should thereby be seen as entirely normal. (McCullough 1999)
Recent proposals propose that male and female not be seen as polar
points along a spectrum, but that the multiplicity of factors contributing
to gendered identities and morphologies should cause us to view
each manifestation gender as a point in a multidimensional space.
(Fausto-Sterling 2000a) Under this new paradigm, the variety of
sex phenotypes presented at birth to the physician would signal,
not the need to correct the genital structure, but only the need
to test to identify specific health risk factors. Set against this
proposed model, the full force of the current model of clinical
intervention seeking to reinforce a binary gender system comes to
the fore: it is simply a socially- and culturally-driven mandate
performed and reinforced through medical disciplinary practices
that are premised upon unquestioned assumptions about gender identify
 That the medical protocol and the medical representation
of intersex(es) constrains and predetermines the choices available
to the parents, is elided in the literature. Usually, articles speak
of the parent's "discomfort" and "confusion",
of the parent's "demand" for intervention and rectification,
thereby representing the intervention as parent-driven and the medical
intervention as a response to this demand. It is clear, however,
from published studies (Tversky and Kahneman 1981; Marteau 1989),
and even the AAP protocol itself (RE 9958), that physicians and
medical policy makers do indeed recognize the power of the physician
in interacting with parents. Emphasizing the importance of framing
the description for the parents, this framing impacts upon not only
the reception of the information, but the eventual decision outcome.
The physician is taught to choose terms wisely, to educate the parents
so that they accept the logic of the protocol and the physician-team's
recommendations. Interestingly, the success of this approach, however,
depends upon a variety of factors, including the level of parental
education, which seems to impact upon the effectiveness of the physicians
persuasive logic. (Nussbaum 2000 mentions the difficulties physicians
face with certain not very sophisticated parents.) Nevertheless,
it is reported by physicians that the parents, when presented with
the option of surgical intervention, almost uniformly choose to
pursue this route. (Hendricks 1993) It is the presentation of surgery
as a solution to a problem carefully taught the parents by
their physician that leads the parents to agree. (cf. Dreger 2002)
 In contrast, sociologist Suzanne Kessler has assembled data
of the way parents view their intersexed children in their own words.
The letters from parents containing their initial reaction to their
children consistently describe their children as "perfect"
and "perfectly healthy". Some of them kept using these
terms, even while describing their children's genital anomalies
and the procedures physician's prescribed for "correction".
(Kessler 1998, 93) Other parents described how physicians altered
their perception of their children, stating "we had no idea
there was anything wrong", or "no one ever expressed feelings
there was something 'wrong' with him", or that the physicians,
not the parents, had some question as to the gender of the child.
(Kessler 1998, 94) When parents did show concern for their child's
state, it was more to do with the potential health issues (regarding
CAH, in particular) and medical treatment options than with gender
identity and genital appearance: Which hormones and how often? What
do the surgical procedures do? What kind of follow up is necessary?
How healthy will the child be? It is also clear that when the genitals
and the procedures upon them were mentioned, the discussions about
them were shaped by the rhetoric of the psychosexual guidelines
and physicians, with little or no mention, for example, about the
experiences of the child undergoing such operations. (Kessler 1998,
 Given that, historically, intersexed children and adults were
not a problem until medically defined as such (Dreger 1998, 15-78);
legally, the problem of intersexuality was a question of inheritance
and suffrage (Fausto-Sterling, 30-36); and clinically, underreporting
of intersexed conditions continues to occur, it seems a reasonable
hypothesis that, without the intervention of the physician and the
rhetoric of pathology, the parent might not feel the pressing need
to confront issues of gender ideal conformity. The child's body
is held under suspicion first and foremost in and by the medical
 It is due the representation of the body as non-normal, as
(re-)presenting a problem, that the physician-surgeon can offer
skills to fix the problem, a rhetorical context in which the parents
and patient are caught beneath the full force of clinical disciplining
management. Even under circumstances wherein a parent-driven initiative
is taken to render the body surgically normalized, it is the rhetorical
power of the label of not normal, ambiguous , disordered that contributes
to the conviction to fix the body of the child. What becomes clear
in this murky area of "defining the intersexed" is that
rhetoric of identification and representation by the literature
and protocol, not to mention the individual physician, focuses its
full rhetorical force to pathologize the body of the child and renders
its state emergent and in need of fixing.
 Rhetoric of Curing: Once the physician is convinced
of the ambiguity of the genitals, has instructed the parents to
recognize it, runs the tests and determines the gender to be assigned
to the child, how does the physician justify the necessity of the
surgery? After all, it is not that genital operations are at all
necessary to meet the medical challenges (as distinct from the psychosocial
challenges) confronting the patient.
 In order to justify surgery, the literature draws from a variety
of inventional techniques, which could be summarized as a rhetoric
of tragedy. Terms such as "necessary", "must",
"demand" and "require" become part of the discourse
of physicians when describing these operations. (Kessler 1998, 32)
The psychosexual management guidelines suggest that without the
surgery, neither the parents nor the child will accept the gender
assignment, since the genitals would not clearly display
the appropriate and distinctive markings. The parents might reject
 Fear of teasing and the assumption of childhood trauma resulting
from it, figures large in the literature, without any specific documentation
regarding the experience of intersexed children who have not undergone
surgery. The "locker room" test in particular plays a
vital role for judging the adequacy of size and shape of the "penis".
(Mureau et al. 1995; cf. E Lee 1994; Kessler 1998, 70; Kipnis and
Diamond 1998, 403)
 The medical reports on these surgeries use terms such as "disfiguring
and embarrassing" (Gross, Randolph and Crigler 1966), "deformed",
"offensive", "troublesome" (Randolph, Hung and
Rathlev 1981), "ungainly" (Newman, Randolph and Anderson
1992), "unsightly" (Kogan, Smey and Levitt 1983) when
discussing "clitorises" deemed "grossly enlarged"
(Gross, Randolph and Crigler 1966). When describing "micropenises",
the language is not as dramatic, but can nevertheless verge on the
tragic: a child with such a "heartbreaking" condition
"must" be raised as "females", they are "doomed
to life as a male without a penis". (Newman, Randolph and Anderson
1992, 650) A "small" penis must be constantly reaffirmed
in its adequacy to fulfill masculinity. After testosterone treatments
[HCG] are administered on the child, physicians look for a reaffirmation
"of his allegiance to all things masculine." (Newman,
Randolph and Anderson 1992, 645) Parents are reported as having
"encouraged more appropriate male behavior". (Guthrie,
Smith and Graham 1973, 250)
 In the tragic atmosphere of an intersex diagnosis, surgeries
become a necessity. In fact, so committed to intervention, surgeons
have been known to perform genitoplasty upon children without prior
authorization, in addition to other surgical procedures being performed
at the time. (Wilson and Reiner 1999, 119) There are available to
the surgeon a wide range of genitoplastic techniques available:
cliteroplastic and phalloplastic surgeries for the phallus (its
reduction, resection, elimination, or, in the case of a hypospadic
penis, reconstruction), vaginoplasties to help construct and elongate
the vagina, labioplasties to "improve" and "naturalize"
the look of the labia majora. (For an excellent summary, cf. Fausto-Sterling
2000b, 56-63) Consistently, each current surgical technique is described
as producing "normal" looking genitals (no matter which
era the report comes from), and techniques are represented as vastly
improved from those that had been favorable in previous years. (For
examples of a rhetoric of progress", cf. Kessler 1998, 74;
compare Chase 1998) The report success rates are 100%, with results
routinely categorized as "excellent", "acceptable",
resulting in achieving a "satisfactory cosmetic result",
"normal or near normal anatomic appearance", obtaining
vaginal openings "adequate for sexual intercourse", achieving
"excellent results" in hypospadic repairs, and almost
always the surgeries result in "minimal complications."
(Fausto-Sterling 2000b, Table 4.1-3) The protocol demands the surgeries
as necessary, the surgeons report ever improving "excellent"
 Three issues confront us here. First, as already noted, in
spite of the thousands of genital surgeries performed on intersexed
children over the last five decades, no meta-analyses of surgical
outcomes have been offered to date. What few follow-up studies
have been reported show a vastly different picture than that of
the surgeons. Of 129 adults reporting outcomes in six follow-up
studies (Mulaikai, Migeon and Rock 1987; Allen, Hardy and Churchill
1982; Slijper et al. 1994; Sotiropoulos et al. 1976; Newman, Randolph
and Anderson 1992; Hendren and Atala 1995; Mininberg 1982) on vaginoplastic
surgeries, well over half reported complications. One follow-up
report on twelve cliteroplastic surgeries showed only five cases
reported erectile function and sexual gratification. (Sotiropoulos
1976, 601) Another reported ambivalence toward sexual activity as
well as sexual inhibition. (Mininberg 1982, 355) A recent report
out of London showed sexual dysfunction common in CAIS individuals,
with global mean scores worse that the population average, especially
for sexual activity, non-communication with partner about sexual
activity, and difficulty with vaginal penetration. (Minto and Creighton)
Another showed that 33% of those who underwent cliteroplastic surgery
in their sample had never been sexually active and scored significantly
abnormal for difficulty with orgasm in comparison with their subjects
who had not undergone surgery. (Minto, Creighton and Woodhouse 2001)
The results for phalloplasty on hypospadic penises were mixed: these
"men" experienced their first sexual encounter at the
same age as "normal" "males", and showed no
significant difference in "sexual behavior or functioning".
But, they were a lot more timid about seeking out sexual contacts,
this timidity growing with the number of surgical procedures performed.
(Fausto-Sterling 2000b, 86) This would suggest that the claim for
success is unsubstantiated.
 Second, as also noted, no standards for success have been
agreed upon and are frequently the observations of the physician
surgeon with respect to observable, that is, cosmetic outcomes.
(Draft Statement, Clitoral Surgery Follow Up Data) Summarizing
reports on vaginoplasties on 314 individuals, Fausto-Sterling found
only 2/3 of the studies gave specific criteria for success,
but these did not agree upon the criteria among them. Reductive
clitoroplasties fared worse, with two of the nine surveyed reports
offering no criteria for "success", or four focusing upon
cosmetic results only, and only one emphasizing psychological and
long-term follow-up. (Fausto-Sterling 2000b, Table 4.1; Kessler
 Third, depending on the condition, from 30% - 80% of children
receiving genital surgery undergo more than one procedure, many
from upwards of three to five. (Fausto-Sterling 2000b, 86) Fausto-Sterling
found high frequencies of complications for vaginoplasty leading
to additional surgeries, occasionally a call for postoperative psychological
follow up to help patients accept the surgery, and, in general,
poor success rates (the highest reported 65% "satisfactory
introitus and vagina"). Almost half of the "boys"
who underwent phalloplastic surgery between 1985-1992 had to undergo
secondary operations to repair the results of the first surgeries.
(cf. also Kessler 1998, 71)
 These results have been confirmed and elaborated by a recent
study coming out of Johns Hopkins. In spite of assurances from the
literature given to parents that for gender-assigned males 23 surgeries
represent the maximum number of operations and that some patients
may need touch up surgery for gender-assigned females, (Migeon et
al. 2001) the latest reports from a follow up study 39 hypospadias
46,XY patients show a statistical mean of 5.8 surgeries for men,
and a statistical mean of 2.1 for women. Men rated their body image
scores higher than the observer-physicians, but neither group was
entirely satisfied. Reasons for dissatisfaction were overwhelmingly
the unusual appearance of genitalia (71%), with dissatisfaction
of gentiosexual function being attributed to surgical complications.
Physicians and women rated better cosmetic outcome of feminizing
genitoplasty than the men, but did not differ from them in the satisfaction
with sexual functioning (somewhat unsatisfied) or body image (somewhat
satisfied). Like men, the appearance of their genitalia was the
greatest single factor contributing to their dissatisfaction with
body image. (Migeon 2002) In total, almost half of all participants
reported dissatisfaction with their body image, and two-third
were dissatisfied with their sexual functioning.
 It is important to note, the subjective declaration of surgical
success by urologists notwithstanding, the same techniques for adult
transgendered patients are not reported as so successful. (Green
1995) Anecdotal reports from the transgendered community reflect
a large number of transsexuals opting out of genital surgery altogether,
and those that do undergo genitoplasty and succeed in "passing"
cosmetically, report scarring, numbing, residual pain, the need
for repeated dilation or catheterization (for MTF), and sometimes
difficulty with maintaining hormonal therapy without unwanted side-effects.
(Cf. Califia 1997, 192, 207-209) Surgeons operating on adult transsexuals
provide a much different picture of the results, a more nuanced
rhetoric seeking to generate more "realistic" expectations
regarding surgical outcomes. (Kessler 1998, 73)
 It is unclear how much of this is communicated to the parents
or patients, nor how well medical information about these procedures,
their long-term impact, and the underlying medical conditions they
are intended to address are shared. Some recent studies have suggested
that under certain circumstances parents are not given consistent
information to help them understand the circumstances that they
are confronting, (Abramsky 2001; Biesecker 2001) and only half of
adult patients according to a follow up study were well informed
of their condition and medical history and satisfied with their
knowledge. (Migeon 2002) It is these factors that contribute greatly
to the argument that informed consent simply cannot and does not
take place in decision-making regarding the body of the infant.
 Even if it is the case that full disclosure of what few results
we have of any meta-analysis and/or long-term study, or if it were
the case that the results agreed upon measures of success and could
demonstrate it, nevertheless the context of genitoplastic surgery
is a context of erasure of difference in an effort to construct
"normalcy. Between the declaration of "ambiguous"
genitals, the authoritative assignment of gender, the rhetoric of
tragedy surrounding the condition of the child, the "necessity"
of surgical intervention, the frequency of secondary surgical procedures,
and the commitment of the protocol to force the child into culturally,
not medically grounded concepts of gender, medical management places
and keeps the intersexed child in a state of continued medical management.
"Curing" creates and maintains a state of "illness".
 Rhetoric of Illness: The surgery is declared "successful",
and the child and parents go home ready to live "normal"
lives according to the gender identity "discovered" and
"constructed". But what, exactly, does "success"
mean? We mentioned earlier the difficulty with which medical standards
can be found and applied to the surgical outcomes. We have also
mentioned questions regarding the standards by which to determine
successful gender assignment. (Cf. Holmes 1995) Alongside these
basic, but also obvious issues confronting the protocol, there is
something more subtle to consider: the paradox at the heart of the
 Specifically, I wish to refer to the rhetorical effect of
current medical management that blurs the distinction between the
"natural" and the "constructed". It proceeds
first by taking the "natural" gender indicators on the
body of the newborn and turning them into a problem. It holds the
body under judgment of suspicion, and expresses this suspicion in
a way that suggests that the body has not completed its development:
the gender is "there", only it is "hidden".
Insofar as the gender is indeed "there", the body has
been rejected in its typical role of "natural" foundation
for gender identity. The medical protocol demands that the body
conform to a preset agenda. What is "natural" has been
rejected. The solution? To "construct" a body through
surgical techniques and hormone replacement. But it is this "constructed"
body that reflects the "true" gender. It is this "constructed"
body that is described as "natural".
 The body of the intersex(es) is thereby placed in a very strange
zone. It is, for all intents and purposes, a cyborg body, a construction
of organic and technological components that are supposed to represent
more naturally the authentic gender. The success of the protocol
depends upon the intersexed child and the parents ignoring all the
artificiality the body displays and accepting it as "natural".
It is dependent upon a denial of the daily experiences of encountering
its own artificiality, experiences intensified each and every time
the protocol and its procedures are employed (secondary surgeries,
dilation, catheterization, hormone injections/ingestion, follow
up consultations, therapy sessions). It requires for its success
that the patient and parents to adopt an Orwellian doublethink.
 Within such constraints the success of the protocol, whatever
its criteria for success are, is severely undermined. Indeed, it
is fatally flawed, as it suggests that even if the patient accepts
her/his assigned gender, s/he does so in spite of the trauma s/he
undergoes when facing the abnormal normality of the medically managed
body. Indeed, psychoanalytic literature confirms this: patients
experience their treatment as trauma and the source of longstanding
psychological damage. (Shopper 1995; Money and Lamacz 1987) One
report found that genital surgeries in childhood influenced patient
fantasies of injury and sexual difference. (Rosenblitt 1991) Another
reported that the universal source of pain among intersexed adults
was their experience at the hands of physicians. (Preves 1999) Still
another reported a normally outgoing and active child, after having
been assigned her gender and undergoing surgery because shy and
withdrawn and lodged vehement protests against her hormonal treatments
administered later. (Keppel and Osofsky 1985) Even advocates for
the protocol noted that parents were reluctant to bring the child
back for outpatient check-ups due to having to confront the condition
they were trying to forget. (Slijper 1994)
 Unfortunately, normalizing procedures like cosmetic genital
surgeries sometimes inadvertently [sic] make parents and children
feel unnecessary shame. Many adults I know with intersex conditions
feel that their parents decision to change their genitals for cosmetic
reasons means that their parents saw them as freaks, even though
that is not what their parents intended. (Dreger 2002)
 These clinical observations are echoed throughout the published,
anecdotal first-hand reports of intersexed patients having undergone
genital surgery and gender reassignment. Uniformly, they reflect
symptomatology of trauma related to the medical management. First-person
accounts in Chrysalis, reproduced and expanded in Dreger
shows a consistency of themes: isolation and a sense of "monstrosity",
anger at the deception and silence they repeatedly confronted, shame
at the hands of physicians who put them on display, humiliation
at the stigmatization experienced by repeated medical interventions
(Alexandra 1997), pain from surgical scarring and physical therapy
(Melson 2001), little sex drive, few experiences of orgasm. (Alizai
et al. 1999) Other first-person testimonials relate similar messages.
 Parental reports, rare-to-non-existent in medical literature,
also support this conclusion. Assembled by sociologist Wendy Kessler,
parents reflect traumatological symptoms. They report the initial
fear and sense of helplessness and confusion at being told their
healthy newborn is intersexed. Time and again parents talk about
preparing for the time when they can talk to their child, and defend
their decisions on the basis of ignorance or obligation. (Kessler
1998, 90) One report from a mother speaks of how her 18-month old
intersexed child stopped pulling out her own eyelashes and biting
her nails only after the mother stopped all efforts at dilating
her vagina. Another reports that her child who is scared of her
"tube". Still others relate how the child who has to squeeze
urine out of a diverticulum each time he pees, because of the damage
he suffered at the hands of a pediatric urologist. One letter told
of a five year old who says, "I hate my dong, I wish I was
born a girl," after two surgeries to "correct" his
hypospadias. (Kessler 1998, 61-64)
 These reports, by both intersexed patients and their parents,
prompted one scholar to suggest that the experiences of those undergoing
medical management are directly reflective of similar seculae of
childhood sexual abuse. These include similar experiences of shame
and embarrassment, secrecy and silence, misinformation, dissociation
and body estrangement, and betrayal trauma. (Alexander 1997) These
experiences have been confirmed, especially trauma, in one of the
few psychological case studies to be published on the intersexed.
 The difficulty with referring to these testimonials is that
for physicians anecdotal reports do not carry the weight of clinical
trials and follow-up studies. Only recently have long-term studies
been published that include evaluation of psychological function.
The results of these studies suggest that the current protocol is
not, in fact, helping the patients accept and feel comfortable with
themselves. One study found 40% of those who underwent treatment
had developed psychopathology by age 16. (Slijper et al. 1998) The
Johns Hopkins study also indicates that while gender assignment
has been generally "successful" for those participating
in the follow-up study, over half of the individuals have reported
psychosocial difficulties related to their bodies, and worse results
regarding sexual comfort. (Migeon 2002, Discussion: Sexual Orientation)
 Interestingly, the authors of these reports indicate that
many chose not to participate, and offer as a possible reason the
rejection of, and anger with, the protocol and the physician-managers
under whose care they were treated. (Migeon et al. 2002)
 The conclusion to be drawn from these various sources is that
the "curative" procedures and interventions designed to
help the intersexed children "heal" have, instead, made
them feel "ill" at ease - with themselves, their physicians,
their society. Upon the body of the intersex(es) are carved the
markings of a gender ideal strictly for the purposes of bringing
comfort to others, regardless of the consequences to the child upon
whom the burden of conformity is shifted. The result is a constraint
upon the child to become complicit in the attempt at erasure of
abnormality, an attempt that seeks to convince the patient and parents
that the medically managed body is normal. The result is, the child
cannot be anything other than ill.
 Our study brings about new insights to the discussion of the
reform of current medical management policies of the intersex(es),
insights not yet considered by ethicists, policy makers, or gender
theorists: that the intersex is rendered through medical management
a rhetorical, not physiological state of pathology in need
of repair. It reveals that the current practices meant to address
their existence do so at the expense of the healing they to bring
 With respect to the current ethical criticisms advocating
a halt to surgical intervention: if through surgical and cloning
techniques genitals can be fashioned that function without trauma
or loss of sensation; if disclosure and "informed consent"
are fully enacted: the medical approach of management and intervention
cannot succeed, because its rhetoric requires a commitment
on the part of the intersexed individual (and parents, friends,
colleagues, playmates) to accept the erasure of their intersexuality
as normal. As long as the bodies of the intersex(es) are viewed
and rhetorically represented as incomplete, faulty or insufficient,
as long as the modern medical industrial complex presents itself
as the means for identifying the true sex and surgically altering
the body of the patient to normalize it, only the body of the medically
intervened will be considered and represented as fixed. The paradox
of the rhetoric of the medical management of the intersex(es) is
simply this: only the surgically altered and rhetorically subsumed
body becomes the standard by which to judge an intersexed patient
 Current ethical models do nothing to relieve this problem.
At the heart of the current ethical critique lies a continued presumption
of gender binarism from which the intersexed child deviates. While
laudatory for asserting the autonomy of the patient and for indicating
that the surgeries are for the comfort of the parent and doctor
alone, the pragmatism of the appeal continues to allow for the presumption
that intersexed children are not normal. The body is rendered suspect,
the disease is presented to the parents in terms of deviation and
pathology, medical research and intervention is presented as the
cure, the intended audience is parents and observers, the result
 But the patient suffers the debilitating consequences for
deviation from culturally and medically mandated normativity.
ACKNOWLEDGMENTS. I would like to acknowledge support of the Alexander
von Humboldt-Stiftung for funding research leading to this publication.
Thanks also goes to the Interfakultæres Zentrum fuer Ethik
in den Wissenschaften of the University of Tuebingen, Prof. Dietmar
Mieth and Dr. Regina Ammicht-Quinn of the Catholic Faculty at Tuebingen,
and Dr. Hille Haker of Harvard Divinity for their support of this
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J. David Hester is Research Fellow of the Alexander von Humboldt
Stiftung. His monographs include Academic Constraints in Rhetorical
Criticism of the New Testament: An Introduction to a Rhetoric of
Power, and forthcoming works entitled The Rhetorics of Healing:
Intersexes, Medicine and Alternative Paradigms of Healing
and The Postgender Jesus: Bible, Eunuchs and New Sexualities.
He is also Founding Editor of the ejournal Queen: a journal of
rhetoric and power.
J. David Hester
"Rhetoric of the Medical Management of Intersex Children"