Intersexuality: On Secret Bodies and Secrecy

Limor Meoded Danon

&

Niza Yanay

Dept. Of Sociology and Anthropology

Ben-Gurion University of the Negev

Beer Sheva, Israel.

1

Please send all correspondence to Niza Yanay, Dept. ofSociology and Anthropology, Ben-Gurion University, BeerSheva, Israel. Phone: 972-8-6472033. E-mail: niza@bgu.ac.il

Short Biographies

Limor Danon lectures on gender and sexuality. She

received her Ph.D. from the Department of Sociology

and Anthropology at Ben-Gurion University.

Currently she is writing on sexualities and

identities in Israel.

Niza Yanay is Associate Professor in the Dept. of

Sociology and Anthropology at Ben-Gurion

University, Israel. She is the author of the book

The Ideology of Hatred: the Psychic Power of Discourse, Fordham

University Press, 2012.

2

Intersexuality: On Secret Bodies and Secrecy

Abstract

The article problematizes the treatment of intersex as a

secret within the medical and family systems. Under the

biosocial assumption that the "intersexual" body is

pathological, and requiring immediate surgical and hormonal

regulation, intersex individuals are made to undergo a

process of transforsexation, i.e., the violent production of a

3

normative masculinity or femininity by means of invasive

clinical practices. In this process absolute secrecy serves

as a central factor for the success of normalization. We

argue that not only does 'the secret' of intersex bodies

become an active factor in the normalization of sex, but

paradoxically it is counteracted by the body, which does not

"speak" the language of 'the secret' and continues to

reproduce new forms of intersex combinations in response to

ongoing medical intervention. Our analysis is based on case

histories told by six mothers of intersex children, and by

11 intersex adults, stories in which secrecy has been an

essential theme in the process of transforsexation imposed by

doctors and followed by the parents. Secrecy, even more than

the surgery itself, was, in the experience of intersex

adults, a great cause of confusion, anger, mistrust and

criticism. Because of secrecy, intersex children are thus

deprived of a language to name their experience or interpret

the sense of their body.

4

Keywords: Intersexuality, intersex subjects, sexual

identity, secrecy, sex/gender system, medical discourse.

Intersexuality: On Secret Bodies and Secrecy

The home page of the Intersex Society of North America

(ISNA) states that about one in 1500 to one in 2000 births

involve children born with what are termed atypical

genitalia. It is also said that "a lot more people than that

are born with some subtler forms of sex anatomy variations,

some of which won't show up until later in life."1 In Israel

the birthrate of intersex babies is one in 1000 births.2

These are not small numbers. And yet not many people outside

the medical field are aware of the phenomenon or even

familiar with the meaning of the term. There is a great

secrecy and silencing around intersex births. As we shall

show, the secret (and secrecy) of intersexuality is a

dominant theme in the stories of parents of intersex

5

children, doctors, and intersex adults. Doctors and other

professional experts treating intersex children emphasize

the importance and necessity of secrecy for the "full

success" of the treatments, by which they mean the

transformation of the intersex body into a normative male or

female body.

This is not to say that intersex does not have a long and

well known history (Meyerowitz, 2002). On the contrary, in

the nineteenth and early twentieth centuries intersexuality

was labeled hermaphroditism or pseudohermaphroditism and

doctors in both Europe and the U.S.A. practiced various

transformative surgeries and treatments on adult patients

who asked to be operated on. Yet the legality of these

operations was constantly debated. As a result, doctors,

psychologists and lawmakers commonly agreed that, if they so

desired, hermaphrodite adults should be "corrected" along

their gender identification "to fit the person as much as

possible into the physical category of either female or

6

male" (Meyerowitz, 2002, p. 112). Meyerowitz writes that in

the case of infants "the match" was predominantly according

to the "genetic sex." Since the 1950s most intersex babies

and young children, at least in Israel, have been and still

are subjected to immediate intervention by surgery and

hormonal treatments to fit the child into one of the binary

genders (male or female), with the consent of the parents

(the meaning of consent being ambiguous, of course). Because

intersex is perceived as a biological anomaly, doctors,

neurosurgeons, psychologists, social workers, and the

parents (reassured by doctors) strongly believe that surgery

followed by treatments can normalize the intersex body and

"fix" the anomaly in such a way that the child will be able

to grow up as a "normal" male or female, on the condition

that the child (and the rest of the extended family,

including siblings) will remain ignorant of the

intervention. With the right socialization, the doctors

promise the parents, the child will never know his or her

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sex and gender-assignment. But the reality of the child, and

family included, is never as simple as that. Secrecy,

concealment and deception, as we will show, are often the

main burden and the most difficult aspects mentioned by

families and by intersex adults when they speak about the

treatments they went through as children (Birnkmann, et.

al., 2007).

In this paper we discuss the way in which the secret

works and becomes part of the coercive conditions that

reconstruct the intersex body. We shall claim that the

secret is among the key determinants in the practice of

normalizing the intersex body. Procedures to erase the

original body and its memory are not only surgical but also

social, predominantly by hiding the intersex body and its

history beneath a veil of secrecy. We will first show how

the cooperation between the various doctors and parents

usually leads to a process of changing the body's sex, a

medical and discursive technology which we call

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transforsexation (the transformation of sex in-the-body – the

sexuation of the body - by coercive means in order to

reassign gender to intersex babies and children); and how,

for the change to be "complete," it is necessary to keep it

an absolute secret as one of the conditions for the

"disappearance" of the original intersex body. Second, we

shall argue that in spite of the treatments, and perhaps

because of them, the intersex body never completely

disappears, that it continues to be active and productive,

reproducing intersexuality and intersex bodies against the

coercive conditions of transforsexation. True, it is a wounded

body, but it is a body that responds to the regulative power

of experts, parents, and scientific discourse by reacting

physically to these conditions and challenging the social-

normative assumptions of gender and sexuality; it is a body

that refuses to forget its past.

Finally, our goal is also conceptual. We believe that

understanding intersex, and especially the ways in which the

9

body itself opposes and disrupts the medical interventions

and treatments, tells us something about the body's conditions

of possibility to produce a sexuality that raises particular

questions contesting biological determinism and thus

challenges the normative unitary male and female categories

of the sex/gender system. Many feminist scholars have

criticized the normative binary sex/gender system from

different psychological, philosophical, social and political

perspectives. Sexual difference has been vastly studied and

problematized, and transgender theorists have pointed out

"that the signifier 'gender' does not reference a signified

'sex' in quite the direct way assumed by the idea of a

sex/gender system" (Stryker, 1998, p. 147). The problem,

however, is always the limits of our language in naming the

undoing of gender. Butler (2000) claims, rightly, that

struggles against all confining norms involve the 'working

of a limit.' We cannot overcome all exclusions, she points

out: "[w]e struggle against them, seek to establish new

10

norms of intelligibility, and yet cannot fully transform all

that is unspeakable into what is speakable." In her analysis

of the famous case of David Reimer3, Butler (2004)

underscores the limit of narratives (knowledge) in

representing the inconceivable. She persuasively writes (p.

69): "To do justice to David is, certainly, to take him at

his word and to call him by his chosen name, but how are we

to understand his word and his name?" This is always the

crucial question, particularly when we represent people who

understand, as David did, that there is a norm and that they

have "fallen short of the norm."

If we look away for a moment, however, and focus not on

the name — that is, on the way one describes himself or

herself as a man or a woman — but on the process by which

the name is normalized in reference to the body and vice

versa, we can deepen our understanding of how one "gains a

certain authorization to begin a self-description within the

norms of [this] language" (Butler, 2004, p. 69), how one

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begins to feel uncomfortable within his or her gendered

body. To that extent, we examine the conditions under which

intersex children begin to see and feel their body in

reference to sexual difference. Particularly, we ask: how

does the secret and silencing of the fact of intersex work?

How does the secret represent and reproduce

heteronormativity? How does the body's ongoing production of

various symptoms defy and expose the secret? And how does

the exposition of wounds and corporeal changes reveal the

logic, violence, and heteronormative regulation of the

sex/gender system? Before we go any further, however, we

must briefly explain what intersex stands for and its

relation to the secret.

Intersexuality: The construction of a secret

The concept of intersex, or hermaphroditism in the past, is

not new to the literature. Many scholars have cited well-

known case histories to discuss the phenomenon (Reis, 2005;

12

Dreger, 1998; Mak, 2005; Fausto-Sterling, 1993; Foucault,

1980; Meyerowitz, 2002). The concept of intersex was

introduced into the medical literature in 1917 by biologist

Richard Goldschmidt (Dreger, 1998). It is an umbrella term

for an autonomous development of the body, encompassing a

variety of chromosomal, genetic and morphological conditions

in which the body simultaneously develops mixed sexual

characteristics, socially signified as both male and female.

In the 1950s psychologist John Money at Johns Hopkins

University developed a new therapeutic approach with a

detailed therapeutic protocol. As opposed to the approach

that sought out the "true sex" in the body, Money's approach

focused on the 'most suitable sex,' i.e., the constitution

and emplacement in intersex subjects of a stable gender

identity that is either male or female. Modernism

(especially in the nineteenth century), which aspired to

separate the normal from the pathological, saw

hermaphroditism as a social problem that must be diagnosed

13

as early as possible in order to be treated scientifically.

That is still the dominant approach at large, although it is

important to note that since the 1950s not a few studies

have criticized the way intersex is dealt with, speaking out

against the biomedical experts and contending that through

their surgical procedures to construct 'typical' genitalia,

administration of synthetic hormones, and sometimes even

removal of internal genitalia (ovaries, uterus, testicles),

doctors are reproducing the social gender norms and the

dominant (hetero)normative conceptions of gender for no real

medical reason (Karkazis, 2008; Ford, 2000; Holmes, 2009;

Morland, 2001, 2009). For besides dangerous solute loss in

some babies, which requires medical intervention, intersex

is not a clinical condition that endangers babies or causes

any physical distress.

Nonetheless, intersex usually draws immediate medical

attention and intervention in the bodies of the newborn. And

so, already at birth, intersex babies undergo surgical

14

procedures and hormonal treatments with the aim of changing

and normalizing their bodies.4 Over the years, the

scientific attempts to discover the "true sex" of intersex

subjects have produced new knowledge (influenced by

innovations and technological possibilities) concerning the

"nature" of intersex. At one time anatomy was the primary

criterion, afterwards came the age of the gonads, and

finally in the twentieth century hormones conquered

biomedical discourse (Redick, 2004). Today, the medical

system has accepted the name Disorder of Sex Development, or

DSD, which is meant to replace intersex, grasped as a gender

identity, with a medical-clinical term (Dreger and Herndon,

2009).5 The name itself already points to the new conception

emphasizing the irregularity in sexual development, a sort

of developmental error.

Treatment usually begins upon the discovery of ambiguous

external genitalia, leading to various medical examinations

the purpose of which is to diagnose, disprove or confirm

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such conditions.6 Intersex corporeality, then, is

characterized nowadays by a lack of conformity between

external and internal sexual anatomy, by the development or

lack thereof of the gonads (sex glands), and by various

configurations of the sex chromosomes (Karkazis, 2008). In

effect, intersex, in all its many diverse shades and

variations (for example, see note 4), is diagnosed when

doctors find, according to their definitions, any lack of

conformity and consistency among the sex chromosomes,

gonads, and internal and external genitalia.

We have called the technology of redesigning and

reconstructing the intersexual body by medical intervention

transforsexation (in both the Foucaultian sense, and as a

technical procedure), to signify the control by which the

various elements of the medical apparatus (diagnosis, design

and follow-up) work in unison to change the sex of the

newborn child to fit the hetero-normative gender system. The

term reflects how the medical and social discourses

16

construct and assign gender to intersex babies and children.

Ostensibly in order to succeed, this process of forced

construction requires concealment and suppression.

Untruthful information and deception become part of the

secret production of gender. The body undergoes a sexual

transformation and new gender assignment through covert

processes and silenced, secretive procedures that are geared

to erase the past of the body's sexual organs. Intersex,

regarded as an aberration of nature, is kept in the dark and

unspoken, eliciting from doctors and parents alike a

response as to an emergency that requires rectification.

Only a few organizations (ISNA is one of them) and activists

fight for the rights of intersex children and adult.

There are three discursive practices in the process we

are calling transforsexation. The first is diagnosis. At this

stage, the body is examined for its "sexual"

characteristics. The second stage of the transforsexation

process is design, where surgical and hormonal intervention

17

is performed in order to reconstitute the intersexual body

as a typical body. The third and last stage of the process

is follow-up monitoring. Importantly, this is clinical but

not mental or emotional follow-up, a monitoring solely of

the body's adaptation to the surgical and hormonal

practices. There is only a medical protocol of tests such as

hormonal dosage, response of the body to hormones, height,

weight, bone development, and the body's adaptation to the

new sex organs.7 As mentioned above, in all three stages of

the transforsexation process, the procedures are accompanied by

a secrecy that is strictly kept. The importance of secrecy

as a therapeutic element was already determined by John

Money, who saw it as a critical factor for developing a

stable gender identity in intersex subjects who had

undergone a process of surgical and hormonal change. Among

Money's therapeutic recommendations was the interesting

condition according to which parents have to believe that

the medical specialists will find the "optimal gender

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identity" for their child, and they must therefore cooperate

unconditionally and give the experts the freedom to define

their child's gender identity. Likewise he recommended that

the genital surgical procedures to remove the external

intersex genitalia be performed as early as possible.8

The various experts and therapists today work on the

basis of a similar assumption that the early procedures and

therapies performed on the babies' bodies will be forgotten

in time and all memory of them erased from the children's

minds and bodies. The medical logic says: "If the child and

other members in the family do not know, the history of the

body will be forgotten and erased." The following is one

geneticist's explanation of how he treated a mother after

her son had been diagnosed with Klinefelter's syndrome:

… There was one time when I even talked to the mother alone,

I asked her to come unaccompanied. And in the end what we

did was we in effect steered the conversation in such a way

that until the end of the conversation she didn't even know

for certain what the answer was. And she said she didn't

19

want to know what the answer was and we recorded in the file

that she didn't receive the answer. […] I said to her look,

I'll give you a scenario for life down the road… He brings a

future bride, you know, suppose he is, we don't know yet,

but suppose he is, do you reveal it? Just a moment: you

knew, and you concealed the information? And then afterwards

when they find out [the physical condition of the

boy/youth/adult through fertility testing], then you knew

but you didn't tell him? And you didn't tell her? And you

let them go ahead and get married? […] It could be that he's

not even a Klinefelter [laughing]; that is, I kept the

conversation very, eh, at no stage did I put her in the

know. […] And at her request this meeting ended, both aloud

and in writing, "that the woman who is the custodian of the

examinee asked not to be given the answer." That's it, and

that's the end of the story… And he's not in on it at all…

(from an interview, Oct 7th, 2009)

As the geneticist quoted above makes abundantly clear,

knowing itself is a problem. In other words, what he's

saying is that the knowledge may be a cause for confusion in

20

the boy's sexual identity and, therefore, in the event that

he is still a minor (under the age of eighteen), he (the

geneticist) generally prefers to talk to the parents (and

usually the mother) and not with the boy himself. Moreover,

what the above quote makes evident is how the geneticist

keeps skirting the issue, concealing the information from

both the boy and his mother. He invents a social scenario,

which he has rehearsed in advance, that is concerned with

family secrets and fertility. The paradox is that the doctor

and mother come to share a secret without ever talking about

it; each in a different way, of course, and from a different

position. The doctor's speech is amorphous, unclear, and

that is how he brings the mother into the circle of secrecy.

The mother, having no other choice and possibly feeling

ashamed and guilty, submits to the authority of the doctor.

Thus the doctor is able after the meeting to record in the

medical file that the mother "asked not to be given the

answer." The message that the geneticist conveys to the

21

mother, through this kind of opaque counseling, is that it's

better not to know, that this information is so terrible and

frightening that it's best to hide it. According to this

doctor, the secret is meant to protect the child from social

malaise. In fact, it propagates the idea that the intersex

body is a pathological body better hidden and erased. As we

shall see below, the power of the medical system closes in

on the parents and playing on their anxiety forces them to

cooperate by using evasive, dire professional language that

leaves the parents even more baffled and scared.

The above citation of the geneticist was taken from an

interview with him as part of a research study on intersex

in Israel.9 The study was conducted during the years 2005-

2012 and included 22 semi-structured interviews with various

experts in the medical and psychological fields. In addition

we interviewed six mothers (most parents were understandably

reluctant to be interviewed) who kindly agreed to share with

us their feelings and experiences.10 We also interviewed 11

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intersex adults who were willing to talk openly and tell us

their life stories.11 All the interviews were analyzed by

delineating dominant themes following the methods of

Grounded Theory (Corbin and Strauss, 1990). One such

dominant theme was the issue of secrecy, which, although

mentioned also in the literature and on ISNA's website, is

not a fully developed theme as a political issue of sexual

and gender construction.

Parents revealed (often with great guilt and shame) the

pressure on them to cooperate with the doctors and hide

their child's intersex, and intersex adults similarly

underscored the impact of the secret and secrecy on their

lives, the feelings of suspicion and the trauma of

discovery. We have thus chosen to focus on the power of the

secret, its mechanism and method (laid out by the parents)

and the construction of secrecy (by the medical system) as a

critique of the binary sex and gender system from the point

of view of 'the secret'.

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The working of the secret

A secret is a social monitor that regulates and promises

conformity with and responsiveness to the Norm. Individuals

and organizations keep secrets for various reasons, mainly

(but not exclusively) to escape shaming, embarrassment,

mistreatment, punishment, and so forth.12 Bok (1984) calls

attention to the Latin source of the word secrecy (secretum),

meaning to separate, create a boundary. She notes that the

power of the secret is based on blurred boundaries between

the internal and the external and between those who know and

those who do not know, and we might add also between the

sacred and the profane, or duty and crime (Derrida, 1995).

Simmel (1906) claims, that the secret is a universal

sociological structure. People, he says, never reveal

themselves completely to others; they always keep some

intimate information to themselves, which remains unknown to

others. According to him, people have to stay somewhat

24

distant from each other in order to foster intimacy between

them. Moreover, individuals must have the right of secrecy

to feel secure, creative and productive. It is evident that

for Simmel, social distance (the right of secrecy) and

intimacy are tied together in social life. Keeping one's

personal life a secret and having the right of secrecy

characterizes discrete relations that are necessary for

economic, professional, and even amorous relationships.

But what happens when the secret is controlled by an

authoritative power (organizational or professional),

leaving little freedom or chance for individual decision?

What happens when the body itself becomes the object of

forced secrecy? Simmel recognizes that the body is our first

possession in life, and therefore an invasion of the body

violates the whole of the personality (1906, p. 454).

Although he believed that secrecy is a vital part of all

social interactions, that secrets (or distance) protect the

freedom of certain people, he was aware that it can also

25

violate the freedom of others by, for example, betrayal. A

secret encourages bonding among the keepers of the secret,

but can spread and encourage abuse of others. Secrets are

also constantly threatening to undermine those very

boundaries and walls they raise, being violable and subject

to leakage. But we can think of another sense of betrayal;

the knowledge of intersex kept secret from children born

with varied chromosomes, genitalia and gonads, leaving no

space for the freedom of deliberation, hesitation,

rethinking or refusal.

In contrast to Simmel's approach, which emphasizes the

productive structural aspects of the secret, others have

viewed secrecy as a destructive, immoral action that

sabotages social and family relations, and which is

significantly harmful to the health and welfare of both

those hiding the secret and those from whom it is being kept

(Imber-Black, 1993, 1998; Glaser and Strauss, 1964; Bok,

1984). Bok (1984: 18) compares secrecy to fire; it is vital,

26

but can be truly daunting. Fire and secrecy, she says,

protect life, but both can also choke and hold sway over

life.

The important issue here is that intersex babies and

children are not even given the right of secrecy; the body

is invaded and becomes the possession of others (often

including the parents) under secrecy. Hence, hiding the

condition of intersex and the medical intervention by which

a specific gender is assigned to the child is not a matter

of discretion, but rather of deception and betrayal. The

body itself becomes the "thing" that is being kept secret.

And so, the secret operates in the family (and by extension

society) as "that thing" which constitutes fear and thereby

conformity with and obedience to the duty of the norm.

Forcing a 'secret' on intersex children eliminates any

new possibility of sexual otherness outside the gender

system of femininity and masculinity. As Ku (1998, p. 181)

points out, a secret is "a discursive code that performs an

27

evaluative and regulative function in the public sphere." In

her struggle to politicize the intersex movement, Cheryl

Chase (1998) defines her approach as aiming to destabilize

the heteronormative assumptions that underlie the violence

against the body of intersex subjects. With the secrecy

woven around the intersex body, however, the secret itself

becomes incorporated within the violence against the body

and the heteronormative order that protects its basic

assumptions through the manipulation of social fears. We do

not mean to say that lifting the veil of secrecy simply by

speaking out can guarantee less harm, or that breaking the

'code of silence' would prevent stigma or coercion. As we

have pointed out, speaking out is already constituted by the

norm, which the secret only serves to screen. Still, the

place of the secret and secrecy is detrimental to the

understanding of how a supposedly liberal and democratic

discourse, which ostensibly offers parents full

participation in the decision-making process, and has a

28

declared policy of taking into consideration their ethnic,

national and religious beliefs and concerns, becomes a

regulatory machine. The secret, Sedgwick (1981) notes,

intersects with dissected forms of knowing by which reality

itself become incoherent and unintelligible to the child.

Moreover, Lin-Mei and Boyle (2004) further argue that

secrecy impoverishes the language with which we can address

genital differences. The issue, then, is not the

speakability or unspeakability of the secret, but the

politics of deception that forces heteronormative logic on

any judgment and possibility of becoming different.

Paradoxically, however, the coercive secrecy surrounding

intersex is precisely what allows the parents and intersex

adults to speak. Paraphrasing Butler (2000, p. 32) on

sadomasochism, we can say that by crossing the boundary of

the secret as a limit to speech, parents and intersex adults

are finally able at some point to talk about the secret and

thus confront and feel their suffering and pain, their

29

confusion and anger, as a basis for intelligibility,

critique , resistance and subjectivization.

The Parents

As noted above, the parents of intersex subjects are

important actors in the process of treating their children.

Only in the past ten years have studies appeared, mainly in

the U.S.A. and Europe, referring to the experiences of

parents of intersex children and adults. Until then the

voices of parents were represented primarily by the

therapeutic profession, which usually described the parents

as stricken by distress, confusion and helplessness, and as

having asked for help from the medical establishment in

dealing with their distress. Roen (2009: 24-27) contends

that the structuring of the parents as helpless and desirous

of medical intervention serves two central purposes: (a) the

depiction of surgical intervention as something that the

parents want and are not opposed to; and (b) the depiction

30

of medical technology by the therapeutic profession as the

solution to parental anxiety, which will lead to better and

healthier bonding of the parents and children.

While studies by Slijper et al. (2000) and by Dayner, Lee

and Houk (2004) indicate that parents are full partners in

decision-making and in giving their consent to the treatment

methods in general, to genital surgery in particular, most

studies expose the complex and problematic situation in

which parents find themselves vis-à-vis the system. For

instance, those of Hester (2004), Feder (2006), Sanders,

Carter and Goodacre (2007), Thyen at al. ( 2005), or Asch

(2006) indicate (as we have mentioned) that parents receive

only partial medical information from the doctors and

experts; the medical information, which is framed in

scientific, pathological rhetoric, is unclear to them. They

are forced to take action within a limited time frame and to

agree to genital surgical procedures on their babies' bodies

31

without receiving information on the future implications of

the procedures and possible complications.

We must remember that the parents are living in a

cultural, social and familial system which operates

according to sexual and gender norms, such that impel them

to act to protect their children from ridicule and social

isolation in the future. Therefore the parents are usually

coerced, in light of social and professional pressures, to

cooperate with the medical protocol. The medical

establishment does not provide parents with emotional

support and resources; to the contrary, it makes things more

difficult for them by exerting pressure to take action

immediately and perform irreversible surgical procedures on

their babies.

Since parents are crucial agents mediating between the

medical establishment and the intersex subjects, in this

paper we shall present interviews with mothers of intersex

children describing their encounter with the medical and

32

therapeutic systems. As we saw above in the citation by the

endocrinologist who told how he succeeded in co-opting the

parents' agreement to the operation, the relations between

secrecy, parental anxiety and the power and authority of the

doctors to convince the parents and get their cooperation is

a very complicated issue that deserves further research.13

Here our aim is primarily to show what it means to live

beneath a veil of secrecy, and to discuss the power of

secrecy as a signifying discourse of violence, in fact, a

discourse interwoven into the production of sex.

The Mothers' Stories

Each mother had a unique story to tell; they came from

different environments, family circumstances, ethnic, class,

and national backgrounds. At the same time, all the mothers

described how the experts advised them to keep their

children's intersex characteristics a secret from family

members, from society at large, and even from the children

33

themselves. However, they quickly ran into difficulties

keeping the secret from the children and society, and the

secret itself (unseen but felt), as evidenced also by

others, became a huge burden sabotaging the relationship and

trust between the children and parents (see also Kessler,

1998; Karkazis, 2008; Feder, 2002; Sanders, Carter and

Goodacre, 2007). Here we shall present three different

stories. The reason why these stories were chosen rather

than others is solely because they convey in the most

powerful way the "common" feelings, encounters, ideas and

experiences that were the lot of all the mothers we

interviewed. Each story in its unique way tells about the

intimidation and weight of 'the secret.'

"I was given to understand that I was going to give birth to a little

monster."

The first story is Merav's (the mother of Rotem). In the

twenty-ninth week of pregnancy, during an ultrasound systems

34

survey, the doctor noticed a change in the fetus's

genitalia. According to Merav,

[…] He saw a hypertrophy of the adrenal glands in her in the

twenty-ninth week, he measured them and we could see on his

face that he was flustered, and he continued to perform the

ultrasound and he also saw an enlarged clitoris. Because

until now we had seen regular labia like a girl's, and now

we already noticed the enlarged clitoris and large labia.

[…] He usually talks with me, asks questions, at this

examination he was very quiet, I'd already noticed that

something was wrong, I didn't want to interfere. […] I

understood that the problem was in the genitalia, [and] our

first diagnosis together was that it might be hypospadias,

which is a small male sex organ. (Dec. 28, 2009)

The nonverbal communication between the doctor and Merav

conveyed the message that there was a problem with the

fetus. It was manifest in the doctor's body language, in his

flustered facial expression, in the "thundering quiet" of

the room, all of which betrayed the doctor's tension and

35

nervousness. Merav has general medical knowledge, and since

she'd already given birth once she was able to identify the

fetus's genitalia. Since hypospadias, or any other

diagnosis, requires follow-up tests to dismiss alternative

diagnoses, Merav was immediately referred to another doctor

for more tests. The results of the amniocentesis showed that

the fetus had a karyotype of 46XX, and in a genetic

examination a mutation of gene 21 was found. The diagnosis

was classic CAH (Congenital Adrenal Hyperplasia) accompanied

by a salts deficiency. Merav and her partner went with the

results of the diagnosis to a meeting with a specialist, who

reassured them, explaining it was a case that could be

treated. That optimism was shattered, however, when Merav

went to seek genetic counseling. The geneticist recommended

to the parents that they terminate the pregnancy, although

Merav was already in her thirty-sixth week. She recalls:

[…] He said that the girl would suffer terribly in life, she

would be very fat and very hairy and she would not develop

36

and she would be very short, and there might also be a

problem in the brain [laughing]. And we were very surprised

because that wasn't the impression we'd got from Prof. A, it

wasn't the impression we'd got from Dr. D, and it wasn't the

impression I'd got from what I'd read. […] Once again I felt

that everything was collapsing on top of me, because

apparently what I'd understood might not be correct and I

was going to give birth here to some little monster

[laughing]. So what was I to do? I really didn't know what

to do anymore.

Merav was given conflicting opinions by the different

doctors, exacerbating her anxiety and frustration. In her

distress, she turned for help to the CAH forum and described

what had happened. The responses in the forum expressed

different voices: on the one hand parents told about their

personal difficulty in contending with the surgery, the

timely administration of medications, the constant concern

for the children's health ("It's not an easy disease," as

one parent noted). One mother even admitted that if she'd

37

found out in the early stages of her pregnancy she would

have terminated. On the other hand, most of the parents said

they would not have given up their children. Merav received

responses in the forum also from adults with classic CAH,

who explained how complicated their lives were.

In light of the information she'd received, Merav decided

to sustain the pregnancy and gave birth to Rotem. At a

meeting with the parents, the urologist explained that

Rotem's urethra and vaginal opening were fused into one, and

it was also found that the urinary tube was blocked and

therefore there might be an infection. At the age of one

month, Rotem underwent a procedure to open the urinary

tract. The next procedure recommended by the urologist was

concerned with designing her genitalia as female:

construction of a vagina, opening of the external labia, and

reduction of the clitoris. We linger over these details in

order to show what the process of what we are naming as

‘transforsexation’ entails, to give a palpable sense of the

38

surgical procedures that intersex children are forced to

undergo. It's important to note that for Merav, Rotem's

mother, it wasn't difficult to look at or accept her

daughter's genitalia as they appeared at birth. The

difficulty which she talks about has to do with keeping

Rotem's condition a secret, as recommended by the doctor:

[…] That was the recommendation of Prof. V; she said it, I

accepted it, I understood where it's coming from. She said

to me, think that she [Rotem] is a grownup person and she

wants to maintain her privacy. And not everyone has to know

what she once had. As if it's her body. At first I wasn't

afraid to change her diaper next to people, next to close

family at any rate, but when she said that to me I really

did think and said to myself that she's got her rights, her

privacy, and I have no right to expose her, even if it

doesn't bother me that much.

With the remark "not everyone has to know what she once

had, as if it's her body," Merav is describing the purpose

of the transforsexation process — to suppress and eliminate by

39

concealment what had once been the body's past. The message

is that Rotem's body as it appeared at birth was temporary,

deviant, not "really" her body at all. Her "real" body is

the one she'll have after surgery. The insistence on

respecting the right to privacy of the babies in the name of

ethics merely highlights the deviance of the intersex body

and constructs the shame and concealment. After all, parents

of babies with "typical" genitalia generally are not advised

by their doctors to respect their babies' privacy in public.

Despite her mother's qualms, Rotem underwent the genital

procedure at the age of five months. Merav says: "They did a

wonderful job, it looks really natural. Anybody who doesn't

know won't ever know either." After the surgery, however,

there were complications: the stitches opened and Rotem had

to undergo a surgical procedure to repair them. But as far

as Merav is concerned, the surgery was a success; the

genitals look "natural." The statement "Anybody who doesn't know

won't ever know either" clarifies exactly what the key to success

40

is — erasing the intersex body. And this exactly is the

juncture at which Merav henceforward becomes part of the

network of secrecy. Now she can expose Rotem's body before

others and no-one will ever be the wiser and therefore no-

one needs to be told. Will Rotem, who doesn't know, not

know? Does the body itself not know? Does the body itself

not leave signs of its own history or create new signs? That

is the question we have to contend with.

"Don't tell so nobody will know"

Yael, in her fifties, told us that throughout her pregnancy

the fetus lay in breech presentation and therefore the

doctor was unable to see the fetal genitalia. When Yael

arrived at the delivery room, in her eighth month of

pregnancy, she found four doctors waiting for her, including

pediatricians and obstetricians.

They showed her to me, said congratulations, you have a boy.

And the thing is I threw a quick glance at the genitals and

41

it seemed to me that something there wasn't logical,

something unnatural, but I didn't go into it.

After she was born, Orr was taken to the premature ward

for close observation. One of the doctors (who had

specialized in the U.S. and gained experience in the

diagnosis and treatment of intersex newborns) noticed Orr's

genitalia and decided to run some more tests to diagnose her

condition. Meanwhile Orr's father had already informed all

of his family and friends of the birth of a son. Since Orr's

father had already announced the news of the birth of a son,

the doctors suggested that they explain to family members

that because Orr had been born prematurely by breech

delivery, her genitals had become swollen, which was why the

doctors had mistakenly identified her sex, but Orr was

actually a girl. And that's what they did. Yael isn't sure

whether or not the family bought their explanation, but she

says they eventually learned not to ask too many questions,

and when they did ask she and her husband evaded the issue.

42

Yael describes how, during the time leading up to the

surgery, when Orr was undressed in the course of the medical

examinations, the doctors looked at her and touched her

genitals. The first genital procedure on Orr was performed

in the U.S., at Johns Hopkins Hospital, which had been

recommended by the medical team treating Orr. After Orr's

first surgery at the age of three and a half, there was a

radical change in her: from a sociable girl, happy and

smiling in kindergarten, who'd loved to sing and dance, she

turned into an introverted and withdrawn child, far less

sociable, despite Yael's attempts to help her with

psychological treatment. It's important to note that Yael

did not blame the surgical procedure or doubt its purpose.

Her unease stemmed from a feeling that Orr was neither ready

for the surgery from an emotional standpoint nor had been

properly prepared.

In the first surgery, Orr's clitoris was reduced and

external labia were constructed. At the age of eleven and a

43

half, she went to the U.S. again to have a second procedure

performed: construction of a vagina and channeling of the

menstrual flow through the cervix. At age seventeen and a

half she underwent a third procedure, this time in Israel by

an experienced urologist, to stretch the vagina, which had

become plugged over the years. According to Yael, Orr didn't

have an easy time of it with the multiple surgeries. No-one

among her closest kin, including her brother and sister,

knew that she'd been born an intersex individual. Nor did

they know the true reasons for the long trips to the U.S. In

hindsight, Yael thinks that perhaps they were mistaken and

should not have kept it a secret:

[…] Just like some people have all sorts of crazy diseases,

so it's one of the things that's unusual, it's different, so

what. For several years already I've been saying that in my

opinion it shouldn't have been concealed. Also it's a

terrible burden when someone can't tell anyone what he's got

[…] She [Orr] is sitting with it inside her, exploding

44

inside her, literally exploding, it's like fire. That's not

right…

In hindsight, Yael contends that the circumstances of

Orr's birth should not have been concealed, that the family

should have been told, and Orr herself allowed to tell the

secret. All the same, in her remarks the normative

conception that intersex is a disease, and a "crazy" disease

at that, can still be heard. When Yael sought out the

opinion of a psychologist specializing in intersex whether

or not to tell relatives and family members, the response

was negative: "Don't tell so nobody will know," said the

psychologist, "because people won't understand and will call

her bad names." Contrarily, today Yael believes that the

secret meant to protect Orr actually did her harm. Over time

she became more withdrawn, had fewer contacts with her

classmates, and the older she got the lonelier and more

alienated from her surroundings she became.

45

"I'm scared of ruining her childhood for my daughter"

Naama's face was sad, and she spoke in a low and contained

tone of voice, sometimes even whispering, especially when

talking about her daughter Omer's body, out of fear that the

children in the adjacent rooms might overhear. Omer's story

began at the age of ten months, when her mother Naama

discovered a hernia in her groin. Omer had to undergo a

procedure in the course of which the surgeon entertained a

suspicion that there were testes in her body. Several days

later he summoned the parents to his office:

[…] He said that he'd seen testes there [spoken in a

whisper] but he didn't know; it was still in biopsy. I

didn't understand the significance at all. I think that at

that moment I was, I said to him, what's that supposed to

mean? So he said to me look, it could be, I don't know, a

test needs to be performed to see whether there's a uterus,

whether there are ovaries, whether she's got all of that. It

could be that she was born as a boy but with the external

appearance of a girl…

46

Naama burst into tears during the meeting. It was the

first time she'd ever heard of such a possibility, that the

body could develop externally as female yet internally as

male. In an ultrasound examination no uterus or ovaries were

found, and the findings of the biopsy showed that Omer's

gonads were testes and her karyotype 46XY. Omer's condition

was diagnosed as complete androgen insensitivity syndrome

(CAIS). Omer's parents turned to an endocrinologist

specializing in the field:

[…] He said to me look, she'll be a pretty girl, she'll be

tall, he talked about this and that and it really didn't

interest me what he was telling me […] So I said to him wait

a minute, now I want to understand […] What do we do? So he

said look, if you want you can have her testes removed now

and that's what I recommend. I said to him, and if we don't

want now? He replied, you can do it at age 16, 17. And I

said to him, what do I tell her? Then he said, "Tell her

she's fallen sick with cancer."

Interviewer: That's what he said to you?

47

N: Yes, that she'd fallen sick with cancer. I said to him,

what? As if my thoughts already [were], how do I deal with

her pain? And I'm still not completely at peace with it and

it's hard for me […] I'm talking with him and I'm crying,

and he had a facial expression that was very, very not… no

emotion […] The man spoke to me without any emotion. […] My

girl would simply put an end to her life, that's how I saw

it…

The recommended surgery was accompanied by a

recommendation to the parents to keep her bodily condition a

secret from Omer. It would be "easier" for her to contend

with cancer, so the doctor asserted, than with the knowledge

she had testes in her body. Naama experienced severe trauma

at this meeting. She wept and was greatly upset. Sometime

afterwards the parents decided to seek a second opinion and

met another endocrinologist, who like the former one told

the parents, in order to reassure them, that their daughter

"will be a pretty girl and able to enjoy regular sex."14

48

The case may be, as Sanders, Carter and Goodacre (2008)

claim, that the medical information parents are given is not

fully comprehended due to the pressure, tension and

emotional distress during consultation. Naama may perhaps

not remember all the details, but her personal testimony was

one of confusion, contradictory, missing and unsatisfying

information. It was Omer's pediatrician who recommended to

Naama that she make contact with the intersex support group

in Israel. The group's organizer, Shacker, gave support to

Naama, lent an attentive ear and answered all her

questions.15 Omer's parents became acquainted with Shacker's

personal story and her dealings with the medical

establishment, how she too hadn't been told the reason for

the surgery she underwent to remove her testes at the age of

11 by her parents and doctors, who kept her bodily condition

a secret from her. Shacker explained to Omer's parents how

angry she'd felt at her parents and doctors when she found

out the secret for herself. She conveyed the message that it

49

was important for Omer to know about her body and make her

own decisions in regard to it. Concealment of her bodily

condition could only create distrust towards not only the

medical establishment but also the parents, undermining

their relationship with her.

Naama's fear is that if she tells Omer she may lose her

childhood and her joie de vivre. Omer is the family's youngest

child; she has two older brothers and a sister. The family

enjoys a warm and loving bond. Naama is concerned that that

relationship may suffer if the secret is revealed, and the

entire household might undergo an upheaval. She is afraid to

share the secret with the older children lest it slip out.

She herself wants to be the one who tells Omer, now 12, the

secret, but she doesn't know the right way to do it, or

when.

A conclusion of sorts

50

Our purpose here is not to ask whether Rotem, Orr and Omer

are female or male, because that is not the right question.

In fact, by asking it one is already duplicating and

empowering the normative gender system. Even adopting the

definition of intersex points to the problem to some extent,

since the naming itself (inter: in-between female and male)

is already imprisoned in the binary sexual system that makes

it impossible for intersex (a condition that alludes to

multiple combinations and possibilities between organs and

chromosomes, hormones and gonads, but also to an assigned

gender) to slip outside sexed duality. The problem of

representing the intersex subject (and, for that matter,

transgender and transsexual people) is the predicament of

naming, of having to encounter the corporeal body through

language, which marks the body at the same time that it

constructs, as Butler (2013) points out, the "nearly

involuntary dimension of our somatic life." It is true that

we cannot overcome the problem of naming, which is both

51

impairing yet a crucial psychic necessity. If so, what would

a new system of recognition require? How can intersex

subjects name themselves after the secret, taking into

consideration the very processes of the body? How can their

sense of the body, the vital experience of being whole (even

if not one), be expressed? Many intersex adults ask

themselves 'Who am I?' or 'Are my experiences real?' These

questions are related not only to the changes imposed by the

surgery and hormonal treatments, but in a very substantial

way also to the politics of the secret as part of their

history.

Our study emphasizes that even prior to self-naming (but

not prior to being named), forced sexual reassignment,

together with secrecy and lies, constitutes and permeates

intersex as a sign of shame, confusion, anger and mistrust.

But what is there to be ashamed of, and a mistrust of whom;

parents, doctors, society? For intersex children and adults

are not even given a language to name their injury and

52

bodily experiences. After sex-reassignment, they cannot even

claim to have "come home to the self through the new body"

(Prosser, 1998, p. 83), much as this claim is problematic.

We have shown how the secret of their inborn condition

deprives them of a language of knowing themselves; the very

language that promises their parents a "normal" childhood

for their child co-opts the parents into believing that they

were part of the decision, that the medical intervention was

absolutely necessary to "save" their child, and that they

are participating in a benevolent system struggling for the

better good of their child and family. We have shown how the

medical system presents itself as tolerant and liberal, but

in fact it manages a coordinated deception and emotional

regulation of fear and confusion, creating a front of caring

under the guise of normative concerns.

Yet we would argue that the body remembers the wounds and

pain of its past. The body's somatic memory embodies the

evidence of 'the secret.' Shai was raised as a boy because

53

his external organ looked like a penis. At the age of two

years doctors found that he had ovaries, fallopian tubes, a

uterus, and 46XX chromosomes. He went through a series of

operations to remove his female organs, including the

transplant of testicles, and for 22 years he was treated in

the children's endocrinology department at the hospital.

Shai says in the interview: "I remember as a child in the

hospital, you are a little kid and the whole day people take

off your clothes and put your clothes back on, the whole

day. You understand that you are special, that everybody

wants to see, to touch… like a museum specimen; that is how

I felt…" But for many years Shai did not know what "these

people" were looking for and what his "special case" was.

Even at the age of 57, he is still trying to get the medical

records from the hospital to understand what his "case" was,

but to no avail. Shai's story is representative of many

other interviewees. All the adults we interviewed said that

as children they knew "they have something," but they could

54

not tell what it was, or even remember correctly. In

contrast to what the children know, the body keeps producing

physical and psychic pain. The body continues to create

signs on its surface (in the sense of bodily changes and

scars produced through surgery), while the child, or young

adult, is kept in the dark. What does that mean? In what way

does the body (rather than the person) remember its past?

How can the body speak and remember?

Shacker, raised as a girl, was born with 46XY

chromosomes, external sexual organs that looked female, and

testicles. She reports that at the age of 11 she was rushed

to the hospital and was forced by her parents to submit to a

surgical operation; her parents took her to the hospital in

order to "correct something" in her. Shacker was admitted to

the adult plastic surgery department "so that nobody in the

family would know where I was," she says. She also remembers

that she was lying naked on the operating table and the

operating room was cold; very cold. Since then, she says,

55

every time she experiences a rejection by a loved one, she

feels a terrible chill gripping her body. In the case of

Shacker, her body keeps reproducing a memory of great

physical discomfort, a memory which returns as a mimetic

corporeal experience every time she feels abandoned and

helpless in love relations.

Gali too underwent several periodic surgeries. Raised as

a girl and born with a uterus, one ovary and one testicle,

unclear sexual organs and combined XX/XY chromosomes, she

relates that at the age of 8 months her testicle was

removed; at the age of 5 her clitoris was reduced in size,

and the doctors built external labia; and at the age of 12

they built a vagina and a connection between the vagina and

the uterus. Finally, when she was 27 years old she had

cosmetic surgery on her sexual organs. One day, when she

told a friend for the first time about her sexual history

she felt nausea and almost fainted. The memory of the

physical and psychic trauma was reenacted, and the trauma

56

continues to be repeated each time Gali tells (finds words

for) her story. Gali herself comments on that particular

episode by saying "my body [not I] went into shock." Her

body, enacting its "memories" through somatic language,

repeats and thus signifies its early experiences.

The body, Simone de Beauvoir asserts in The Second Sex, has

ways of its own. It responds in active fashion to the

surgeries and hormones, creating new situations all the

time, meeting changes with changes of its own. Time and

again the body's resistance to the process of transforsexation

generates more and more intersex phenomena through side

effects: a vagina fuses shut after being constructed, the

constructed urinary tube collapses and falls apart, scars

and infections develop, breasts develop despite the

administration of hormones to suppress them, and so forth

(corresponding processes are also reported by transsexual

persons as postoperative consequences of their sex-

reassignment). As a result of these reactions, new

57

corrective procedures must be performed in an ongoing

fashion — surgery, followed by new symptoms, followed by

surgery, and so on. This chain of reactions continuously

gives rise to new intersex conditions: when Shai suffered

great pains in his abdomen a few years ago, doctors found a

remaining uterus that looked like a tumor in his belly.

Similarly, when Gali experienced intense pain it was found

that a small part of a tube connected to the (removed)

testicle had either been left in her body or grown again.

These part-organs left in the body, as well as the various

postoperative reactions, tell the history of the body and

its mutilation, contradicting the notion that treatment is

based on the production of one coherent unitary sex, but

also challenging and destabilizing the secret by creating

partial knowledge and suspicions on the basis of which one

can start asking questions.

The point to pursue is that the body doesn't speak the

language of secrecy. The secret does not belong to the body.

58

It belongs to the heteronormative social order. Hence, it

can be said that the intersex body never really vanishes,

but rather assumes new forms. In fact, some intersex adults

spoke in the interviews about feeling two overlapping bodies

within themselves, "a body within a body," and not knowing

which body is their own. Samar, for example, who was raised

as a girl, found out at the age of 36 that in her childhood

all her female organs had been constructed through surgery.

Since her operation (believed to be a kidney problem), she

has had to take cortisone to balance her hormones, but she

felt nauseous, weak and dizzy most of the time and decided

to stop taking the medication. Slowly she has developed hair

on parts of her body, her clitoris grew, and she lost

weight. Reflecting on her self-identity, she said: "the head

is the same head, same thoughts, but I have two bodies that

don't match… I started to draw and I made a line and then

squares and gave names to each part of my body, the breasts

were Samar, my legs were Ahmad, according to how I felt, I

59

was just playing, but then I burst out crying. If I will now

be a man, will my life be easier?" Intersex children are not

born with a female or male sexual identity, but with one of

an array of possible so-called female and male anatomical

combinations. These possibilities clearly do not call for

medical intervention. The question therefore is: how can we

advance social and political struggles in ways that on the

one hand do not idealize the body, but on the other hand do

not force it into the gender machine? It is clear to us that

in all of these struggles, the power of the secret must be

socially resisted in ways that give the parents and their

children a genuine democratic space to negotiate gender and

sexuality. If after all they decide to keep intersex away

from the public eye, it must be theirs and the child's

prerogative.

***

We wish to end this paper with a note on struggle and

survival: we do not make light of the social and personal

60

difficulties that confront parents who are struggling with

the intersex of their children. On the contrary, we have

great sympathy for their fears and the need to protect their

children from social exclusion, mockery and shame. Given

that we live in a heteronormative-dominated society, there

are no clear-cut answers for parents of intersex children

regarding what is right or wrong. At the same time, it is

important to note that the secrecy surrounding intersex,

which is meant to protect and shield children from social

prejudice, does not eliminate suffering. In fact, it creates

more suffering, confusion, shame, suspicion, and shattered

trust. Moreover, the violable secret threatens the family

even when nobody is talking about it. Fighting for the

rights of intersex people, Chase (1998) argues that when

thinking about developing a new subject position "grounded

in forms of embodiment that fall outside the familiar

male/female dichotomy," we should not forget that

cognitively, psychologically and biologically we are still

61

prisoners of the hegemonic two gender/sex model. It is

important to listen to how she, as an intersex adult

herself, positions the terms of the debate: on the one hand,

she calls for an end to surgery on intersex children, to

stop the damaging of the body and allow intersex people to

enjoy genital sensations and pleasure. But "If an intersex

child or adult decides to change gender or undergo surgical

or hormonal alteration of his/her body, that decision should

also be fully respected and facilitated" (Chase, 1998, p.

198). On the other hand, she advocates that "children be

raised as either boys or girls according to which,

designation seems most likely to offer the child the

greatest future sense of comfort" (p. 198). Given our

current linguistic and scientific limitations, this is a

radical position that aims at disrupting the identity

between the body and gender assignment. After all, the

intersex condition (when left alone) can embody a new matrix

62

for sexual being, experience, pleasure, and gender

subjectivity.

63

1

Notes

For further information on birthrates, see http:/www.isna.org/faq/frequency .

2 The numbers of intersex births are tricky. The Israeli Central Bureau of

Statistics shows that in 2009 there were 625 births of babies with sex and urinary

congenital defects. There is no mention of intersex as such.

3 David Reimer (born as a boy, raised as a girl named Brenda, and referred in

medical circles as "the Joan/John case) became a famous case of John Money's

controversial treatments of transsexual and intersex persons at Johns Hopkins

University, after a BBC documentary and a popular book As Nature Made Him by the

journalist John Colapinto. Butler extensively reviews and criticizes the case in

her book Undoing Gender, chapter 3 (pp. 57-74).

4 Germany has passed a new law, which is meant to stop forced operations by letting

parents assign a third sex to their newborn baby on the registration forms. There

are also a few states in the U.S. that allow this.

5 The term DSD was established at an international interdisciplinary conference in

Chicago in 2005 .

6 There are various possibilities of intersex: Congenital Adrenal Hyperplasia (CAH)

may include closed labia, a larger than normal clitoris (one centimeter at birth)

or a smaller than normal penis (2.5 centimeters at birth), the lack of a vagina, or

hypospadias (displaced urethral opening). Congenital adrenal hyperplasia occurs

when the body lacks certain enzymes, leading to a functional imbalance of the

adrenal gland and increased secretion of androgens. In certain situations the

genitalia may appear male or "ambiguous" (bonded labia, absence of vagina, and a

penis/clitoris). This is a form of sensitivity to androgen, where the deficiency of

the 5-alpha enzyme prevents the testosterone from turning into dehydrotestosterone

(DHT), which is the active substance of the testosterone hormone that causes the

development of "male" sexual characteristics (external genitalia) and the

appearance, at puberty, of secondary "male" sexual characteristics: Adam's apple,

deepening of the voice, hirsuteness, growth of the penis and secretion of semen.

Partial Androgen Insensitivity syndrome is a condition in which the body absorbs

androgens only partially, leading to the partial development of internal and

external genitalia with both male and female characteristics, e.g., the development

of testicles and a uterus. Complete androgen insensitivity syndrome (CAIS) is a

condition in which the body is unable to absorb androgens and develops

phenotypically (externally) as female; the external genitalia appear female, but

the internal morphology is male. Sometimes the testicles are in the groin or in the

stomach. A lack of conformity between phenotype and genotype is also associated

with the conditions called 5-alpha reductase deficiency and 17β dehydrogenase

hydroxysteroid deficiency, in which the enzymes controlling the level of

testosterone and its absorption in the body are missing, and the body usually

undergoes a process of virilization (masculinization) at puberty, though at birth

the phenotype is usually female. Sometimes the gonads develop partially, or there

may be gonadal dysgenesis, ovotestis, or a lack of gonads, as in Turner's syndrome.

In certain conditions the karyotype varies from the "typical" sex chromosomes, as

in Turner's syndrome (45, X0), Kleinfenter's syndrome (47,XXY; 48,XXXY), and

mosaicism (XXXY).

7 All the practices we mention in regard to the process of transforsexation are based

on the Israeli case. According to the doctors we interviewed, the follow-up

protocols include only technical information about the body's adaptation to the

medical procedures, but nothing about their well being, happiness, or state of

mind.

8 These recommendations appear in Manny's and Erhardt's book Man and Woman, Boy and

Girl (1972), which was very popular. Similar recommendations are made in earlier

writings by Manny and his associates. The methods of treatment were devised mainly

in the 1960s, when the surgical techniques also began to improve.

9 The study is part of the doctoral thesis of the first author, who also conducted

the interviews with doctors, parents and intersex subjects. The larger study

included interviews with 22 medical experts including endocrinologists,

geneticists, family doctors, gynecologists, urologists, social workers and

psychologists, 11 intersex subjects and 6 mothers.

10 Reaching intersex people and their families was a long journey which

required sensitivity, patience, and deep commitment. The first author was able to

enter a support group through Shacker whom she met at an international conference

on intersex in the UK, March 19, 2005. Shacker, who was the organizer of a support

group in Israel, made the first connections for us. At some later stage the first

author succeeded in making some connections on her own through the Tapuz website .

11All names were altered, identifying details (such as geographic locations)

changed, and the interview files were secured in a coded system.

12 A new research on how transgender people in Israel use the internet shows that

some youngsters and adults reveal and share intimate fantasies and performances

they don't want their family and friends to know in order to manage their identity

in secret. See, Marciano, Avi, 2014. "Living the VirtuReal: Negotiating Transgender

Identity in the Cyberspace," J. of Computer Mediated Communication, 19(4): 824-838.

13 We want to thank the anonymous reviewer who suggested that "shame and authority

are folded into the idea of secrecy making for a very interesting tension between

maternal and medical anxiety." We also wish to thank the co-editor who further

offered that "secrecy [could] be seen as a placeholder for shame as it travels back

and forth between doctors and parents and children." Our data show that this viable

direction is indeed deserving of further inquiry and writing, which unfortunately

we cannot pursue here.

14 One of the popular images regarding CAIS, which also came up among a number of

doctors in this study, is that these girls are pretty and tall. It has also

appeared in television series such as House and in popular literature such as the

novel Middlesex by Jeffrey Eugenides (2002).

15 Shacker is a name in Arabic that means intersex. It is the alias chosen by this

participant, whose life story the first author used in her doctoral dissertation.

Shacker founded the support group in 2006 in order to create a place where intersex

subjects could share their stories, frustrations and difficulties in society, and

could also receive support from others experiencing similar hardship. Parents of

intersex subjects also participate in the group, which holds meetings and get-

togethers at irregular intervals of several months.

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