Graduate School of Social Sciences
“The importance of having a penis”
Qualitative research on ten men with hypospadias
Master Thesis
presented by DEVROYE Tom (11237295)
Supervisor: Dr. Margriet VAN HEESCH
Second Supervisor : Dr. Gert HEKMA
Master Degree in Sociology – Gender, Sexuality and Society
Table of content
Acknowledgements 2
1. Introduction………... 3
1.1. Hypo- what? Discovery of a taboo………... 3
1.2. Methodology……… 8
1.3. Literature review and theoretical context………. 11
1.4. Thesis outline………13 2. Literature review……… 15 2.1. Hypospadias……… 15 2.2. Masculinity………. 21 2.3. Intersex………. 25 3. Data Analysis 1……….. 30 3.1. Medical stories………. 30
3.2. “My doctor, this hero” ………. 34
3.3. Nobody talks about the “area of shame” ………. 37
3.4. “I thought I was the only one in the world”………. 40
3.5. A lack of information… somehow filled by Internet and the forum………… 43
3.6. The switching point……….. 45
4. Data analysis 2……… 47
4.1. What about love? What about sex? ………. 47
4.2. Masculinity and masculinities……….. 50
4.3. Convergence between men with hypospadias and intersex people………….. 55
5. Solutions……….. 58
5.1. Introduction……….. 58
5.2. Preamble……….. 58
5.3. What men want……… 59
5.4. What parents should learn ………... 60
6. Conclusions………. 65 6.1. Introduction………. 65 6.2. Synthesis……….. 65 6.3. A new perspective ……….. 68 6.4. A course of action……… 68 6.5. Broader implications ……… 68 Bibliography 70
Acknowledgements
I would like to thank all the people who took part, directly or indirectly, in this thesis.
My first thoughts go to the men I interviewed, Sjoert, Kim, Ton, Jo, Arnold, Miles, Hans, Klaas, Michiel and Dominique. You all shared some parts of your lives – which were sometimes quite sensitive - but you trusted me and I really hope my work will reflect your words. Allowing me to get into your life stories was absolutely thrilling and I sincerely thank you for that. Thank you also to the plentiful of parents who filled in the questionnaire.
I am very grateful I had the chance to work with such an amazing person and supervisor, Dr. Margriet Van Heesch. Your encouragement as well as your interest and knowledge on the topic made this research a great experience for me, on a personal and on an academic level.
I want to thank Dr. Gert Hekma, my second reader, for being my second supervisor but also for his incredible classes. You will be missed in the academic world and I feel very grateful I had the chance to be one of your students.
As a thesis is a long and difficult process, I want to thank my dear Allan who supported me, encouraged me, cheered me up when I was feeling down and always challenged my thoughts regarding this work no matter how late or messy I was. Your help, numerous corrections, comments, constant support and affection were precious to me.
Finally, this work would not exist if I was not surrounded by amazing friends and family who followed my work and made me go much deeper than expected in my thoughts through our very intense conversations. Elif, Azadeh, Eddy, this work is a bit of yours.
I also want to thank all the people who did not know anything about hypospadias and who also guided me in my research with their questions and thoughts.
Last but not least, I want to thank my godmother, who was the most amazing person I had the chance to meet in my life and who gives me the strength to keep on going. From the bottom of my heart, thank you!
1. Introduction
1.1. Hypo- what? Discovery of a taboo
One cloudy and rainy day in Amsterdam. In class, we are watching the documentary Intersexion about intersex individuals. Then starts speaking Tiger Devore, an American psychologist and intersex activist. He is tall and let us see his muscles throughout his grey t-shirt. Beyond this hunk guy opening up about himself, his life story is not a rosy picture and was actually punctuated by rough times and multiple surgeries he did not agree on (he had a dozen before the age of ten).
“When parents have a new-born intersex kid, they are told their kids have a deformity of the genitals. Those are the words that are used. And then the doctor comes in and says ‘This is easy to fix. One or two surgeries and he will never know.’ So, of course, nervous frightened young parents of an infant are going say ‘Absolutely, do the surgeries as soon as possible.’”1
Once I saw and heard him, my interest in intersex people grew. I started looking on the Internet. Hypospadias is what he was diagnosed for. Hypo- what? I never heard or read the word before. All the people I started asking around me were in the same position. What a surprise it was then to discover that one out of every two-hundred boys is born with some form of hypospadias. This is not something that happens occasionally to very few people in the world. I then wondered even more why I never heard or saw it. No friend ever told me about it. No one I had sex with ever told me about it. Maybe none of them had hypospadias. But how about in second and third circles? How come no one knows about it? How come no one talks about it?
In the public discourse, hypospadias is taboo. I saw a flow of medical articles about what this medical malformation is and what/how/why/when to do the operation. They talk about “fixing”, “repairing”, “operating” the babies before they can remember what happened to them. I then clicked on “images”. It showed me hundreds of pictures of penises – before the operation, after the operation, the process of the operation, all the different types of hypospadias… There are knives, surgeons’ hands, green operations sheets. There is no face. There is no voice or personal experience. Only genitals of babies being cut and built again. But what exactly was so broken that needed to be fixed with such invasive operations into such intimate and fragile body parts? Devore is one of the only people in the world (!) who publicly told his story about being born with hypospadias. He strongly denounces the doctors who performed surgeries on his genitalia when he was a boy arguing that “If they had just left my urinary meatus [pee-hole] where it
was, at the base of my penis right by the scrotum, it could have avoided at least twelve of those surgeries, [but] it would have been just fine to have a penis that peed out of the bottom instead of the top, and I would not have the feeling that I was damaged”2.
At that moment, I knew I would do my research on men born with hypospadias.
This research went through different stages as you will witness. At first, the plan was to research on intersex individuals. I found their stories fascinating because they raise a lot of questions and reflections on our gender system and questions the supposed binary nature of sexes. Sex, like gender, is a spectrum. For most people, those notions are too complex and are kind of problematic as they put into question a system seen as normal, evident and natural. It is even more striking to note that some studies evaluate the number of individuals with intersex traits as reaching almost 2% of the population. What does it say then? It is a huge taboo. Barely anyone talks about intersex and barely anyone knows about intersex.
The thesis evolved in a different direction after my field work with ten men who were born with that particularity, as it turned out none of them identified as intersex (and most of them did not know what it meant). Instead of identifying as such, they mostly saw themselves as cisgender males with a different penis that “needed to be fixed”. Their difference was self-analyzed as a medical problem. Then it became particularly interesting to understand the relationship they, or their parents, had with surgeons, pediatricians, etc. The construction of their personality and their trajectories of life were clearly influenced by their hypospadias. Let’s then get into their stories!
This subject touches upon many sensitive topics such as sex and gender, medicalization and unconsented surgeries on newborns, but also talks about norms, standards, categorizations and social pressure. It talks about masculinity and what it means to be a man. It talks about bodies. It talks about minorities. It talks about knowledge, power and resistance. It talks about silence, shame and stigma, but also about heteronormativity, homophobia, and the gender binary system. There is a lot at stake in this topic. Bringing it in the spotlight can surely make a society more acceptant and more respectful towards individuals. My thesis aims to talk about a taboo and to give a voice to people who have barely ever been heard.
2 Devore, H. (1999). Growing Up in the Surgical Maelstrom, p. 81. In Dreger, A. (1999). Intersex in the Age of Ethics. University Pub. Group, 227 pages.
What is hypospadias?
Different definitions of hypospadias appear in the literature. It is mostly defined as “[…] a common urogenital anomaly […] caused by a disturbance in the development of the urethra, resulting in an abnormal position of the urethra opening”3 or as “one of the commonest
congenital anomalies in male children with a reported incidence of 0.8 to 8.2/1,000 live male births”4. For the Journal of Pediatric Urology, “[…] the incidence of hypospadias is about one
in every 200/300 newborn males, making it the most common congenital malformation of the penis.”5
It usually is noticed and reported by the doctors at birth6. Moreover, “hypospadias presents on
a spectrum of varying severity”7 even though two main categories are usually used: distal – the
most common one - where the meatus is close to the glans and proximal where the meatus is further under the penis8.
3 M. M. A. Mureau, F. M. E. Slijper, A. K. Slob, and F. C. Verhulst. (1995). Genital Perception of Children, adolescents, and adults operated on for hypospadias: a comparative study. The Journal of Sex Research, 32:4 p. 289
4 Moriya, K., Kakizaki, H. Tanaka, H., Furuno, T. Higashiyama, H., Sano, H., Kitta, T. and Nonomura, K. (2006). Long-Term Cosmetic and Sexual Outcome of Hypospadias Surgery: Norm Related Study in Adolescence. The Journal of Urology, 176, p. 1889
5 Winship BB, et al. (2017). In pursuit of the perfect penis: Hypospadias repair outcomes. In Journal of Pediatric
Urology, p. 1
6 Mieusset, R., Soulié, M. (2005). Hypospadias: consequences psychosociales, urologiques, sexuelles et reproductive à l’âge adulte. Andrologie, 15:1, introduction
7 Winship BB, et al. (2017). Op. cit., p. 1
In most of the cases, the medical staff advises the parents to operate as early as possible to make the penis “normal” and allow the boy to be able to pee standing up and to ejaculate “like any other boy” (those are the two most common justifications given by doctors and parents). In most cases, it does not necessarily involve any other sexual difference (regarding the chromosomes, the gonads and the hormones) but the surgeries can lead to complications with sexual problem (such as erectile ones), psychological issues and sometimes insensitivity or scars on the penis. According to the Intersex Society of North America (ISNA), hypospadias is “essentially a cosmetic difference” and “a hypospadic penis is entirely capable of pleasurable sexual sensation and orgasm”.
What are the surgeries?
Most authors agree that the surgeries’ goal is triple: ability to urinate in a standing position, reach full sexual penile functions and create a “good-looking” penis9. It usually consists in
“reconstructing the urethra to the tip of the glans and straightening the penis”. If successful, Moriya believes “[it] ensures a cosmetic penile appearance, voiding in the standing position and unhampered sexual function in adulthood”.10 Mureau adds that it is also the “achievement
of a cosmetic penile appearance that is as normal as possible”11.
Nevertheless, it is important to notice that “[…] there are only few studies regarding the long-term outcome of hypospadias surgery compared with control subjects”12.
Research question
Details about the aim of this research
My interest in the subject is plural. I aspire to understand why a subject that is not new and that touches an important part of the world population remains such a secret. On the one hand, the stigma of being different, even though not directly visible to most of the people makes surgeons operate what are essentially healthy genitalia to fit the norm. Why do people hide it? Is it shameful to have a different penis? Do penile surgeries work and what are their consequences? What are the reasons invoked by doctors and parents to operate? On the other hand, I wonder
9 Mieusset, R., Soulié, M. (2005). Op. cit., p. 24
10 Moriya, K., Kakizaki, H., Tanaka, H. et al. (2006). Op. cit., p. 1889
11 M. M. A. Mureau, F. M. E. Slijper, A. K. Slob, F. C. Verhulst and R. J. M. Nijman. (1996). Satisfaction with Penile Appearance After Hypospadias Surgery: The Patient and Surgeon View. The Journal of Urology, 155:1, p. 703
how gender norms regulate our behaviors and actions. Indeed, being a woman or being a man in every society is related - among others - to certain actions, certain ways of talking, of laughing, of walking, of dressing. What makes a man then? How important is the penis for man to be seen as masculine? Does it need to be big, thick, long, curved, straight? Does having a different penis make a man less a man? What is a different penis? Is there a standard one? And does it need to be able to penetrate to fulfill the sexual needs of the man or its partners? Main research question and sub-questions
In my research, I aim to link hypospadias and masculinity, but it also intersects with the medical discourse, secret, stigma, coital imperative, sexuality, sex drive, hetero- and homosexuality… My research question is “How do men who were medicalized for hypospadias negotiate
their masculinity?”
I will further develop sub-questions in the following chapters such as
- “How was hypospadias defined, portrayed and treated throughout the Western history?” (chapter 2),
- “How are individuals with hypospadias subjects of their difference since they were born?” (chapter 3),
- “How are individuals with hypospadias actors of their lives and using their agency to build their personality?” (chapter 4),
- “How could we imagine a world where hypospadias does not remain a taboo?” (chapter 5).
Along the next chapters, I will answer other questions such as
- “How do cosmetic surgeries on individuals with hypospadias reinforce the idea of the perfect penis as a symbol of masculinity?”,
- “How do individuals with hypospadias see and identify themselves?”;
- “How can we explain that men with hypospadias and intersex organizations seem like two different spheres?”.
1.2. Methodology
My research is mostly a qualitative study based on empirical work. After writing a literature review, I carried out semi-structured interviews with ten individuals who were born with hypospadias. The research mostly took place in the Netherlands but one was conducted in Belgium and two through Skype (one in New-Zealand with a Dutch man and one in Spain with a Belgian man) in May and June 2017. An online anonymous questionnaire was also drafted for parents who had one child or more with hypospadias.
The first part of the research consists in reviewing the work that was done on individuals with hypospadias throughout history which then leads to data collection. As my research is narrowed on a very specific group of people, which makes it a difficult access group, I tried to use many different channels to reach them. I first looked for online fora and Facebook pages on the topic. The first results were “support groups for parents who have (a) child(ren) with hypospadias”. As most of their sons were still babies or young children, it was not very useful in my search for interviewees. Nevertheless, I received many answers from parents, mostly mothers, who explained their stories in a few sentences and showed a real interest in telling them but also acquiring more knowledge about hypospadias and stories of others.
The second part of my research consisted in contacting intersex organizations at the international level, the “Organization Intersex International” (OII) and Tiger Devore personally; at the national level, “Genres Pluriels” in Belgium, “Nederlands Netwerk Intersekse” in the Netherlands, “Collectif Intersexes et Allié.e.s” (CIA) in France; on Facebook through the official or private pages of intersex organizations. I barely received any answers and the ones I received were rather critical towards my work as I was referring to the medical category “hypospadias” rather than to intersex individuals as a whole. There were doubts about my legitimacy to talk about a defined group that should speak for itself rather than being described and studied through me. One person wondered if, besides my academic project, I would do “any good” to intersex individuals. Nevertheless, I had an appointment with one member of “Genres Pluriels” who deals with the intersex part of the association’s work in Brussels in May 2017. I also received positive answers from two men – one from Canada and one from Pakistan – who accepted to answers my questions and do the interview through Skype. I decided not to include them in my research as I eventually focused on men from the Netherlands and Belgium.
The third part, which proved to be the most important, started when I found a Dutch online forum on hypospadias. I contacted the moderator and asked if he could relay my post (in which I was asking to find interviewees). Luckily, he accepted to do so and sent the message to the whole forum mailing-list. My message was not only posted but sent individually to everyone who created an account on the online platform. Within 48 hours, I received 25 answers, mostly from parents (18) but also from men born with hypospadias (7). Within a few days, I could plan most of the interviews I wanted. The parents were also very keen to talk and explain why they decided to have their children operated, or not. Most of them agreed to give me an interview and expressed their enthusiasm.
I contacted eighteen doctors (urologists, pediatricians and surgeons) by email, mainly in Belgium and the Netherlands (from Brussels and Amsterdam). I received two positive answers from Belgian urologists but then did not hear from them again (even after a second follow-up).
Then started the interviews. Every interviewee was diagnosed with hypospadias at birth. Eight of them were born in the Netherlands and hold Dutch nationality. Two of them were born in Belgium and hold Belgian nationality. Other characteristics were not mandatory even though their age, religion, socio-economic situation, education, sexual orientation, etc. might have an impact on the way they perceive themselves as men in a given society.
The interviews tackled different themes about their living experiences such as their childhood, their gender identity and expression, the way they perceive masculinity, the way they felt in social situations where their difference could be revealed, the surgeries they might have been subjected to and the consequences it has in their lives.
All interviews were done in English, audio-recorded and transcribed. The average time for the interviews was seventy-five minutes. Three were conducted in the interviewee’s home, five in public places (mostly cafés) and two on Skype. All participants orally agreed to be audio-recorded and allowed me to use their story as part of my master’s thesis. I will use their first names when I refer to them. The youngest participant was twenty-five years old and the oldest one seventy-two years old, with a median age of forty-three years old. Four of them identified as gay or bisexual and six as straight. All of them identified as men and none as intersex.
Besides the interviews, a questionnaire was drafted for parents of children born with hypospadias. 173 people answered the questionnaire within a week. It was addressing general questions about the profile of the parents but then divided between parents who decided to have surgeries performed on their babies and parents who decided not to.
The data analysis consists in putting in perspective the different concepts and theory exposed in the second chapter with the results found in the interviews. To do so, I coded my interviews with Atlas.ti to separate different categories that focus on different parts of my research. The analysis of the interviews also takes into consideration the different characteristics of the individuals and how different variables I previously cited, have an impact – or not – on the way those individuals negotiate their masculinity.
Some aspects regarding the demographics of the research group of my research must be outlined. Firstly, except one, all the interviews were contacted trough the same online forum. The interviewees deliberately answered my request to give me an interview, which might constitute a bias as many men with hypospadias did not let the opportunity to be reached (on a forum or another platform). Even though they were members of the forum, some of them did not answer and possibly were not interested in talking. The reasons of this phenomenon are unknown and might hide some other stories that could have been relevant for my research. Secondly, although all interviewees had a good command of English, it was not a native language for any of us. It is likely that some details were lost in translation and some words did not fully express the feelings of the interviewees. On the other hand, not expressing such personal aspects of their life in their mother tongue may have been easier for them.
Thirdly, as I eventually centered my topic around masculinity rather than intersex, my research might appear somewhat elusive in this respect as I focused on the importance of “the pursuit of the perfect penis” and I did not go in-depth about intersex history.
As the format of the thesis does not allow me to write a book on a topic, my thesis does not pretend to be exhaustive. It constitutes an analysis of a very specific group of people but could be studied and discussed in many different directions, fields and disciplines.
1.3. Literature review & theoretical context
The literature review is divided in three parts. The first one summarizes the different studies previously made on hypospadias. It does not focus much on the medical research about the different types of hypospadias or the techniques of surgeries but rather on socio-psychological works that explore the lived experiences of individuals with hypospadias.
The second part addresses studies on masculinity. It highlights the importance of hegemonic masculinity but also the importance of the penis for men. It addresses different aspects such as the size, the shape - whether erected or not – but also the imperative of penetration for supposed sexual fulfillment.
The third part talks about intersex people. As it will be explained further in the thesis, none of the men interviewed for this research identified as intersex. Nevertheless, as hypospadias is considered as an intersex condition by several organizations such as the Intersex Society of North America13, I also briefly talk about those categories and the taboo that remains around
intersex stories in general which also applies to individuals with hypospadias.
Literature “Hypospadias”
I start by exposing the work of Marc Mureau, a Dutch academic, in two different studies, in which he gives key tools regarding the level of satisfaction of doctors and men regarding the surgeries and shows the big gap there is between those two groups.
Other research was made about the psychological, sexual, urological and reproductive consequences of surgeries (Mieusset & Soulié, 2005) in France with patients operated in their childhood and in their adulthood, but also in Japan where researchers focused on adolescence and how teenagers would deal with their masculinity after surgeries and how they dealt with what is normal or not (Moriya & al., 2006). I then focus on the reasons to make the surgeries through the editorial of the Journal of Pediatric Urology (Winship BB, et al., 2017) in which they question the necessity of surgeries, that are, according to them, made mostly for cosmetic reasons rather that for health urgency. I also use an article exposing the results of a research made on parents, who sometimes, express regrets after deciding to have surgery for their child (Ghidini, F., Sekulovic, S., Castagnetti, M., 2016).
Literature “Masculinity” & “Penis”
Talking about masculinity cannot be done without exploring the work of Raewyn Connell, an Australia sociologist, on hegemonic masculinity, inspired by Gramsci’s concept of hegemony. I use the revisited version of her work “Hegemonic Masculinity: Rethinking the Concept” (2005). She brings new insights about masculinity in relation to current debates such as globalization or intersectionality, and tries to update her theory and address the criticism it has previously received in the academic world. This work will be the basis of my analysis to explain how the dominant model of the idealized men is putting pressure on individuals.
Connell’s work is then linked to other works on the importance of a good-looking penis that fits the norm perceived by most men. I will show how hegemonic masculinity and the aim to have a perfect penis are intrinsically linked. Moreover, we will explore Michael Johnson Jr.’s work which tackles the importance of the semen in the masculinity. He shows how being a man can be symbolized by ejaculation. It matters regarding this topic as sexual happiness and the ability to pee standing up and to penetrate a partner are fundamental in most of people’s minds. This will be useful in my thesis as one argument often put forward by doctors to legitimate an operation is that boys with hypospadias will not be able to ejaculate in a “normal way” (according to the “coital imperative”), or pee standing up.
I finally use Drummond’s article on how men bodies – and the penis - are linked to masculinity. Wylie and Eardley’s work (2006) on the penis size and the importance of the phallus in masculinity is then linked to Flowers, Langdridge, Gough, and Holliday’s work (2013) who focus on biomedicalisation and how the function of the penis slightly switched for being operative to being beautiful.
Literature “Intersex”
The main author I was inspired by regarding intersex is a North-American professor of biology and of gender studies, Anne Fausto-Sterling. She produced lots of knowledge on the history of sex and intersex/hermaphrodites in history. She also worked a lot on how to build men and women through surgeries but also the power of the social to make a “perfect binary system”. I also call on the work of an American professor of History, Elizabeth Reis, which brings a debate over words - hermaphrodism, intersex, disorder of sex development, and divergence of
sex disorder. To understand how this condition, or those traits, it is important to look at the words which make a discourse and create a reality that has direct consequences on individuals. The third part talks about secrecy, silence, taboo and stigma. I look at MacKenzie, Huntington and Gilmour’s work (2009) as well as Meoded-Danon and Yanay’s work (2016).
1.4. Thesis outline
Chapter 1 : Introduction & Methodology
I outline the reasons which made me work on this very specific topic, the originality of it, and expose my main research question, linking masculinity with the importance of the penis for male individuals and the way they perceive themselves as men in a society. I then briefly talk about my sub-questions and the way this thesis is structured. I also recall some basic notions about hypospadias. In the second part of this chapter, I explain the methodology. The choices I made tell you more on how they made my research the most serious, ethical, and effective possible. I also highlight the limits and ethical issues this research faced.
Chapter 2 : Literature Review & Theoretical Framework
In the second chapter, I come back to the history of men with hypospadias and how they were seen, described and then studied. The second part of the literature review tackles hegemonic masculinity and the literature that focused on the penis, and its important symbolic role in masculinity. I finish by exposing literature on intersex people.
Chapters 3 & 4 : Analysis
In the third chapter, I give an analysis of the interviews made with men with hypospadias, focusing on how they were subjected to it. In this section, I explore the extent to which they had to deal with certain situations they did not choose, and which forced them, in most cases, to live with lies, secret, stigma… In the fourth chapter, I zoom in on the agency of men with hypospadias. I then focus on how these men are subjects of their lives and negotiate their difference. This chapter highlights how hypospadias shapes and influences the identity construction of the interviewees and can become a strength rather than a burden.
Chapter 5 : How could we make a better world?
The fifth chapter is divided into two parts. The first one tackles solutions and tries to give possible paths to make their lives easier, today and in the future. As they don’t live in a bubble,
it is important that people around them and society in general are sensitized. The second part is the analysis and the main findings of the survey drafted online for parents, as they play an important role in most men’s lives.
Chapter 6 : Conclusion
In the conclusion, I will finally give an answer to my question and my sub-questions. I will come back briefly on all the work that was done but also try to give an opening to my topic and maybe some leads for further research on intersex individuals, especially with hypospadias and/or masculinity. I suggest a provocative quote and also propose a course of action in order to facilitate the lives of men who were medicalized for hypospadias.
2. Literature review
2.1. Hypospadias
What was written on hypospadias in the scientific literature? Are there reliable studies regarding hypospadias, the surgeries usually performed and, most importantly in my research, assessment of the psycho-social situation of individuals with that particularity? It was surprising to discover that, even though it touches an important number of people, as we will see below, there is not an important literature on its psychological, social and sexual aspects. The ones available go into different directions and provide different results14. On the contrary, there is a great amount
of medical research that I decided not to consider in-depth as it does not concern my problematic directly as I focus on the sociological part. Nevertheless, as the surgery is meaningful in most interviewees’ stories, it will be briefly tackled in this section and I will present 6 main studies. In the first study, Mureau assessed “the degree of agreement between hypospadias patient and surgeon satisfaction” regarding the penile appearance after hypospadias surgery15. He found
out that “patients were less satisfied than the surgeon”16. There is usually a lack of agreement
between the surgeons and the patients17.
In a second study, Mureau compared the genital and body perceptions between men with hypospadias and men without hypospadias, and concluded that “hypospadias patients had a more negative genital perception than comparison males, predominantly because they were less satisfied with the size and shape of their penis and with the position of the meatus”18.
The third research that I explored was the work of Moriya and al. on “[…] penile appearance, sexual function, such as penile erection quality, libido strength, problems with ejaculation and sexual intercourse, including age at debut, and frequency of masturbation and sexual intercourse”19. They argue that “although patients with hypospadias have a slightly higher rate
of dissatisfaction with penile size, their sexual behavior [is] not different from that in control subjects”20.
14 Mieusset, R., Soulié, M. (2005). Op. cit., p. 25
15 M. M. A. Mureau, F. M. E. Slijper, A. K. Slob, F. C. Verhulst and R. J. M. Nijman. (1996). Op. cit., pp. 703-706
16 Ibidem, p. 703 17 Ibidem, p. 705
18 M. M. A. Mureau, F. M. E. Slijper, A. K. Slob, and F. C. Verhulst. (1995). Op. cit., p. 289 19 Moriya, K., Kakizaki, H., Tanaka, H. et al. (2006). Op. cit., pp. 1889-1890
I then look at the literature review on hypospadias by the French doctors Mieusset and Soulié who compared three different groups - men operated in their childhood, men operated in the adulthood, and men who were not operated - regarding the psychosocial, urological, sexual and reproductive consequences of hypospadias.
Ghigini, Sekulovic and Castagnetti tried to assess the level of satisfaction or regret of parents who made the decision to operate their kids for hypospadias repair. “39,6% presented with moderately strong decisional regret [which is “defined as distress after making a health care choice”]”21.
The editorial of the Journal of Pediatric Urology questioned in 2017 the necessity of most surgeries (especially in the case of distal hypospadias as it “[carries] a greater risk for complications”22) and argues that “[…] the majority of hypospadias surgeries are primarily
cosmetic procedures and outcomes become more important to understand but simultaneously more difficult to measure”23.
What are the most striking results among those studies?
“Surgical complications, postoperative satisfaction of parents, patients, surgeons and even lay observers, urinary function, sexual function, and quality of life all may be considered as relevant outcomes of hypospadias repair. Existing studies examining these outcomes are diverse in their conclusions, but are important to understand when counseling parents and patients prior to any surgical intervention”24.
As briefly introduced in this quote, it seems fundamental to study the impact of surgeries on boys and men as it can influence their entire lives 25. Indeed, the parents or the boys have to be
aware of all the consequences – sometimes very important - it can further bring into their lives.
The importance of having a beautiful penis
All the studies note that the look of the penis matters to men… and even more to men with hypospadias. In this section, let’s explore the overall genital perception but also the size and the circumcision.
21 Ghidini, F., Sekulovic, S., Castagnetti, M. (2016). Parental Decisional Regret after Primary Distal
Hypospadias Repair: Family and Surgery Variables, and Repair Outcomes. In The Journal of Urology, 195, p. 720
22 Winship BB, et al. (2017). Op. cit., p. 1 23 Ibidem
24 Ibidem
The different studies show that adults, but also kids and adolescents, who were born with hypospadias, “had a lower Genital Perception Score (GPS) than comparison men, which means that they were less satisfied with their penile appearance […] [regarding] “their penile size in flaccid as well as in erect state, penile appearance in general, glans shape, the position of the meatus, and penile color”26. Similar opinions were found among the pediatric urologists, who
seemed nevertheless to give higher GPS than the men concerned27. It was the opposite with the
parents who were less satisfied than their sons and rated more negatively the genitalia appearance28. Moriya also shows that those men “perceived a difference in penile appearance
more frequently than controls […]”29. Mieusset and Soulié also highlighted that “one third of
patients perceived their sex as abnormal […]”30. The Journal of Pediatric Urology found out
the same results. Mureau developed three factors that could explain the lower GPS: the perception of the body stimuli, the stimuli from the environment in the form of comparison with others, and the response from others31.
Besides the own genital perception, it is interesting to note that a significant percentage of men without hypospadias are also unhappy with their penile appearance (even though a bit lower)32.
Looking for a ‘good’ penis is not just in relation with hypospadias but also with masculinity. Let’s now look at the size importance and the circumcision that might result from a surgery.
Do you have a big dick?
It seems like there is a tendency among men with hypospadias to have a smaller penis33. This
could be explained by the “penile underdevelopment”, according to Mureau, that constitutes a “major reason for being dissatisfied with penile appearance in adult patients”34. Moriya also
notes the difference of size perception and satisfaction between surgeons, men and parents35
and then advocates for “surgeons [to] realize that many patients worry about the size of the penis”36. Even though the Journal of Pediatric Urology points out that it “is too difficult for
patients and parents to fairly judge”, they confirm that some “additional studies have
26 M. M. A. Mureau, et al. (1995). Op. cit., p. 293 27 Ibidem, p. 704
28 Winship BB, et al. (2017). Op. cit., p. 2
29 Moriya, K., Kakizaki, H., Tanaka, H. et al. (2006). Op. cit., p. 294 30 Mieusset, R., Soulié, M. (2005). Op. cit., p. 26
31 M. M. A. Mureau, et al. (1995). Op. cit., pp. 290-291
32 Moriya, K., Kakizaki, H., Tanaka, H. et al. (2006). Op. cit., p. 1891 33 Ibidem, p. 1890
34 M. M. A. Mureau, et al. (1995). Op. cit., p. 290
35 Moriya, K., Kakizaki, H., Tanaka, H. et al. (2006). Op. cit., p. 1891 36 Ibidem
demonstrated penile length to be an independent predictor of patients’ satisfaction with penile appearance”37.
Will/Did surgery improve in any way the genital perception of men with hypospadias? In most cases, even though “the surgical repair of distal hypospadias appears to be achieving its goal of creating a ‘normal’ penis”38, it actually does not as “surgery [does] not enlarge the penis”39 and
“never produces a perfectly normal penile appearance [as it] produce[s] a circumcised appearance of the penis”40.
Circumcision
“Ritual circumcision is quite different” as it is the family’s choice and they are usually “strongly motivated”41. Even though it depends on many different factors (such as the location, the family
background, the religion, etc.), “the dissatisfaction with the circumcised status was an important factor that was negatively associated with genital perception […]”42. This can be explained by
the “[perception of] the loss of their foreskin as a defect of [the] penis […]”43. As a result, men
with hypospadias were way less “satisfied of cosmetic results than circumcised patients”44 but
this must also be located in a specific geographical and cultural area as circumcision is not perceived the same way in all parts of the world.
What about your love life?
Moriya notices that, in general, “people with hypospadias tended to be more shy and shameful, socially isolated and fearful and lower capacity to have social or emotional relations”45. If
expanded to the relation sphere, Moriya notices that men with hypospadias have “more difficulties to enter in contact with people from the opposite sex […]”46. But in another study
in the 90’s, researchers say “the psychosocial adaptation of hypospadias individuals is not different from the control group” which contradicts what was said previously47.
37 Winship BB, et al. (2017). Op. cit., p. 2 38 Ibidem, p. 3
39 M. M. A. Mureau, et al. (1995). Op. cit., p. 295 40 Ibidem, p. 290
41 Ghidini, F., Sekulovic, S., Castagnetti, M. (2016). Op. cit., p. 724 42 M. M. A. Mureau, et al. (1995). Op. cit., p. 295
43 Ibidem
44 Mieusset, R., Soulié, M. (2005). Op. cit., p. 26
45 Moriya, K., Kakizaki, H., Tanaka, H. et al. (2006). Op. cit., p. 26 46 Ibidem
And your sex life?
Even though there is “no real study on the sexual life”48 of men with hypospadias as most
doctors “do not follow patients into adulthood, have little experience in sexual medicine”49 and
might be mainly visited by the ones who have problems50, some research still focused on the
sexual behavior, erection, ejaculation and other aspects of sexuality.
Results do not always go in the same direction. On the one hand, “[…] some publications warned of a perturbed sexuality as adults”51, which can be translated into “an inhibition of
sexual contact and a bigger fear of the sexual contact”52 with erectile problems happening more
frequently53. Regarding the ejaculation, the issues such as “milking or dribbling”54 or “sexual
difficulties (mechanical or pain) and abnormal ejaculation”55 were reported in all the studies.
On the other hand, Mureau did not highlight any “[…] retarded sexual adjustment or different sexual behavior”56. So did Kimihiko, who did not see any relevant differences in the sexual
behavior, compared to men without hypospadias, among others regarding “masturbation, sexual intercourse, mean age at first masturbation, first sexual intercourse [and] number of coitus partners”57. Finally, it is important to recall that there is “no existing study about the
fertility of men born with hypospadias, whether operated or not”58. How parents deal with their decision
As it is recommended most of the times to perform early surgeries (between ages 6 and 18 months)59, parents take decisions that can influence the entire life of their child, although it is
“not strictly necessary and caries a risk of complications”60.
Ghigini and al. found out that half of the parents let the doctor decide whether to operate or not61. Almost 80% of them would have liked to receive more information from doctors as the
48 Mieusset, R., Soulié, M. (2005). Op. cit., p. 27 49 Winship BB, et al. (2017). Op. cit., p. 3 50 Ibidem
51 Mieusset, R., Soulié, M. (2005). Op. cit., p. 26 52 Ibidem
53 Moriya, K., Kakizaki, H., Tanaka, H. et al. (2006). Op. cit., p. 1890 54 Ibidem, p. 1892
55 Mieusset, R., Soulié, M. (2005). Op. cit., p. 27 56 M. M. A. Mureau, et al. (1996), Op. cit., p. 297
57 Moriya, K., Kakizaki, H., Tanaka, H. et al. (2006). Op. cit., p. 1891 58 Mieusset, R., Soulié, M. (2005). Op. cit., p. 29
59 Ghidini, F., Sekulovic, S., Castagnetti, M. (2016). Op. cit., p. 720 60 Ibidem, pp. 720-721
Internet, which is very often consulted nowadays, is “[…] a source of unreliable information” that can provide “opposing or contradictory information/advice”62. As stated, “this issue might
reflect an intrinsic problem - explaining surgical matters to people with limited medical knowledge”63.
As a result, this can bring tensions within the family and not give confidence to the child as “parents of children with hypospadias have anxieties about their son’s future masculine capabilities (e. g. sexual development and functioning fertility) as a primary concern”64. This
usually happens because parents have “unrealistic expectations of the cosmetic results of surgery”65. In the only other study made by Lorenzo et al., “41% of parents experienced mild
and 9% experienced severe decisional regret”66. Does it evolve with age?
Even though Mureau did not see “[any] statistically significant effect on age”67, adolescence is
considered as a “tricky” moment for teenagers with hypospadias as they show a bigger difficulty to undress in public and to get naked in public, having a lower perception of their genitalia”68. As a result, the Journal of Pediatric Urology argues that “cosmetic and other
outcomes can change with time, especially as patients grow from boys to men”69. Consequences of the operations
Regarding the consequences of the surgery, it was observed in an American study that for men operated during childhood, “most [of them] had at least two complications after the initial repair, such as fistulas, metal stenosis, etc. [but also] frequent urination problems” and a low debit or a “spray urination”70. For those who underwent surgery in their adulthood, the results
are “considerably different” as “complication rates are significantly higher (10 to 30%).”71
Further, more than 31% of the second surgeries “were completed, at least in part, for cosmetic reasons”72.
62 Ghidini, F., Sekulovic, S., Castagnetti, M. (2016). Op. cit., p. 723 63 Ibidem,
64 M. M. A. Mureau, et al. (1995). Op. cit., p. 290 65 Ibidem, p. 297
66 Ghidini, F., Sekulovic, S., Castagnetti, M. (2016). Op. cit., p. 723 67 M. M. A. Mureau, et al. (1995). Op. cit., p. 294
68 Mieusset, R., Soulié, M. (2005). Op. cit., p. 31 69 Winship BB, et al. (2017). Op. cit., p. 2 70 Mieusset, R., Soulié, M. (2005). Op. cit., p. 25 71 Ibidem, p. 27
2.2. Masculinity
“Understanding how male anatomy operates and more importantly, the meaning attached to the male body’s anatomical function, directly affects how masculine identity is socially constructed, understood and perpetuated while also offering insights into why those meanings persist in the dominant culture”.73
This quote introduces perfectly this section which explores the importance of bodies in masculinity. It tackles different topics such as hegemonic masculinity, the importance of the male body and, to a certain extent, the penis, its look and its function.
Bodies matter. They play a crucial role “in understanding [the] meaning and significance [of masculinity] to men”74. As Connell notes it, it is now necessary to recognize the active role of
the bodies, which are “both subjects of social practice and agents in social practice”75 because
“men are doing masculinity”76. Yet, their social construction remains fragile as “proving” one’s
masculinity has to be done daily. This state is then never fully and sustainably acquired77. The
first step might be to admit that “men have major concerns with their bodies in terms of body image”78. There is some fear not to be or look masculine enough. Besides this fear, it remains
difficult for most men to define what being masculine means to them79.
Regarding the nakedness of the body and its legitimacy to be seen by others, Elizabeth Grosz identifies three spheres: (1) the relation “parent/child or doctor/patient”; (2) the intimate relation between “lovers”, and (3) “through representations” (such as a performance)80.
The core concept of hegemonic masculinity
What is being a man? What makes a man? What is a man? Hegemonic masculinity is a theoretical concept developed by Connell that helps us understanding how one type of masculinity takes over other ones in a specific environment. Let’s explore this fundamental notion in masculinities studies.
It can be described “as the pattern of practice (i.e., things done, not just a set of role expectations
73 Johnson, M. (2010). “Just Getting Off”: The Inseparability of Ejaculation and Hegemonic Masculinity. The
Journal of Men’s Studies, 18:3, p. 238
74Drummond, M. (2002). Men’s Bodies and the Meaning of Masculinity. Available on
https://www.researchgate.net/publication/266162480_MEN%27S_BODIES_AND_THE_MEANING_OF_MAS
CULINITY, p. 5
75 Connell, R. W. (2005). Hegemonic Masculinity: Rethinking the concept. Gender and Society. 19:6, p. 851. Sage Publications.
76 Drummond, M. (2002). Op. cit., p. 2 77 Johnson, M. (2010). Op. cit., p. 198 78 Drummond, M. (2002). Op. cit., p. 2 79 Ibidem
80 Cover, R. (2003). The Naked Subject: Nudity, Context and Sexualization in Contemporary Culture. In Body &
or an identity) that allow men’s dominance over women to continue”81. It has a normative role
even though it does not represent the majority of the men’s lives. As “it embodie[s] the currently most honored way of being a man, it require[s] all other men to position themselves in relation to it”82. It is interesting to see how men react to this “ideal” image “and turn themselves into
complicit or resistant types […]”83. It is indeed quite a paradox, perhaps a contradiction that
men might feel pressured but at the same time also reinforce this ideal84. Connell makes a
distinction with “subordinated masculinities” which represent most of the men’s experiences. It is worth saying that hegemony is not a synonym of violence but functions more perniciously “through culture, institutions and persuasion”85.
Connell argues there are three different levels to analyze hegemonic masculinities.
(1) Local, which happens within “families, organizations, and immediate communities”; (2) Regional, which operates “at the level of the culture or the nation-state”; and
(3) Global, which is “constructed in transnational arenas such as world politics and transnational business and media”86.
Those distinctions are relevant as it allows Connell “to recognize the importance of place without falling into a monadic world of totally independent cultures or discourses”87.
The sacrosanct penis
“As Susan Bordo simply points out “[…] not all sexual body parts scream out their gender as definitely as the penis does (1999, p. 23)”88.
The phallus “is a symbol of masculinity”89. It has a history and is observed throughout
“thousands of years”. This can explain why it has such an importance in men’s lives nowadays90. It must be said, characteristics, other than the penis, exist, such as “physical
strength, heterosexuality with authority over women and other men, showing no emotions […], economic independence, and an ability to demonstrate sexual ‘conquest’”91.
81 Connell, R. W. (2005). Op. cit., p. 832 82 Ibidem, p. 832 83 Ibidem, p. 841 84 Ibidem, pp. 852-853 85 Ibidem, p. 832 86 Ibidem, p. 849 87 Ibidem, p. 850
88 Johnson, M. (2010). Op. cit., p.239
89 Wylie, K. R., Eardley, I. (2006). Penile size and the ‘small penis syndrome’. In Journal Compilation, BJU
International. 99, p. 1449
90 Ibidem 91 Ibidem
The phallus and biopower
Through the biomedicalisation perspective, Flowers explores the “contemporary understandings and representations of the penis” which now represents “a new hybrid world of health and aesthetics”92.
Biomedicalisation is a concept that was inspired by the “biopower” of Foucault, and the “biosocial” of Rabinow, in which the “psychosocial and the sociocultural” aspects join. It “provides a context in which to understand relationships between bodies and health”93. In this
matter, biomedicalisation has then “denature[d] and trouble[d] the male body” when the attention goes as much on the penile appearance rather than on its function94. In a sense,
cosmetic penile surgeries and Viagra, among other technologies, have changed the approach regarding the penis95.
A good-looking functional penis
As we just mentioned, the literature now “is concerned with the symbolism of the penis (the ‘phallus’) […] [but also with] clinical, […] and traditional medical pathology”96. In this regard,
the “broken penis”, is seen as in the urge to be fix[ed] and normalize[d]”97. It has to reach its
function, such as if it was a “tool” that works perfectly and, among others, allows penetration98
“As outlined earlier, at the end of the twentieth century, in the context of the rise of the new paradigm of health and/or biomedicalisation, we have witnessed both the problematizing of the male body and an increase in representations of the idealized male body within popular culture.”99
Showing oneself in public spaces: locker-rooms, showers and urinals
For Cover, the conversations in the changing rooms make “men feel positive about themselves” and “[solidify] their masculinity” and it usually proceeds more “verbally than physically”100.
But as the penis is more visible, it can also become “an object of ridicule”101. Beyond sometimes
having some shame, feelings such as the “fear of being scrutinized or mocked” gets bigger and might make some men with perceived very small penises “to avoid social situations and
92 Flowers, P., Langdridge, D., Gough, B., Holliday, R. (2013). On the Biomedicalisation of the Penis: The Commodification of Function and Aesthetics. In International Journal of Men’s Health, 12:2, p. 121 93 Ibidem, p. 122 94 Ibidem, p. 124 95 Ibidem, p. 130 96 Ibidem, p. 124 97 Ibidem 98 Ibidem, pp. 124-125 99 Ibidem, p. 126
100 Cover, R. (2003). Op. cit., p. 61
intimate relationships”102. Indeed, after seeing for the first times other penises in their childhood
(of their brothers, fathers and friends)103, men tend to “check each other out at urinals, in
showers and in changing rooms”104. Drummond believes that “size, specifically muscle size,
plays a crucial role in determining the masculine identity for many males”105. This might not
be a surprise then to notice that men “with a larger penis, in length and circumference, have a better body image, genital image, and have a feeling of greater sexual competence”106, and this
concerns the erect penis as well as the flaccid one.
Flowers believes this “increasing scrutiny” will keep on growing in the future with, in parallel, “penile anxieties” and “self-surveillance”107 becoming “relatively commonplace”108. The
individuals who believe they do not fit the norms will “typically not show sufficient social skills”109.
Importance of the rise of media: the Internet revolution and porn
The media has a role to play in how men perceive themselves as men in society110. Some argue
that it has “a far greater negative impact upon a male’s sense of masculine identity than providing positive physiques upon which to aspire”111. With the rise of the Internet and porn,
public exposure of the body has increased drastically. This created a “mainstreaming” or “normalization”112 of porn that raised anxiety among men113 who could potentially have
visually access to thousands of different naked bodies and could compare themselves with others. The relative disappearance of the private and public spheres “created some surveillance and critical interrogation”114. As a result, those changes “[transformed] […] the relationship
between men, their bodies and the bodies of other men”115.
102 Wylie, K. R., Eardley, I. (2006). Op. cit., p. 1449 103 Ibidem, p. 1450
104 Flowers, P., Langdridge, D., Gough, B., Holliday, R. (2013). Op. cit., p. 129 105 Drummond, M. (2002). Op. cit., p. 1
106 Wylie, K. R., Eardley, I. (2006). Op. cit., p. 1449
107 Flowers, P., Langdridge, D., Gough, B., Holliday, R. (2013). Op. cit., p. 132 “Self-surveillance must now extend beyond the penis as effective tool for penetration to the penis as comparator body part with the penis of the Other”
108 Ibidem, p. 130
109 Wylie, K. R., Eardley, I. (2006). Op. cit., p. 1449 110 Ibidem, p. 1450
111 Drummond, M. (2002). Op. cit., p. 5
112 Flowers, P., Langdridge, D., Gough, B., Holliday, R. (2013). Op. cit., p. 127
113 Ibidem, p. 130 “in a study, ‘37% reported their anxieties emerged within their teenage years as a result of their consumption of pornography and the penises they witnessed therein’”
114 Flowers, P., Langdridge, D., Gough, B., Holliday, R. (2013). Op. cit., pp. 127-128 115 Ibidem, p. 128
How far can you ejaculate?
Michael Johnson Jr. focused his work on what he calls the “ejaculation imperative”.116 To him,
men are expected to have a penis that has “the ability to ejaculate”117. “The quantity of semen”,
but also the “forcefulness of [the] ejaculation” are fundamental characteristics “of a hegemonic masculine ideal, to which males aspire”118 and which eventually partially symbolizes what
being male is. This shows an important aspect: men are “instructed” by peers who teach them what to do or to be to become a man, and they therefore “link their identity with their physiological performance”119. This can be observed in “all forms of pornography” which
shows quite a constant regarding the expected sexual performance120. He noted that the
ejaculation imperative in a “phallocentric society” is very gendered as women are not expected to ejaculate the same way men are121. Ejaculation is also linked to procreation and fertility122.
2.3. Intersex
Even though studying intersex “is not new to the literature”123, it is interesting to notice that the
most attention was put on “medical and surgical issues”124. In this section, I briefly define what
being intersex means and give some more information about intersex experiences- which are on some levels very similar to the experiences of individuals with hypospadias.
What do we talk about?
What does intersex mean? Is it the same as hermaphrodism and disorder of sex development (DSD)? Although “the[se] terms might seem synonymous”, there are “in fact […] significant differences with controversial consequences”125.
Let us start with saying that it is not easy to create a category that includes every intersex person in a single group as it presents “a diverse set of conditions involving aspects of external genitalia, sex chromosomes, internal reproductive anatomy, and gender identity […]”126.
116 Johnson, M. (2010). Op. cit., p. 238 117 Ibidem, p. 244 118 Ibidem, p. 238 119 Ibidem 120 Ibidem, p. 239 121 Ibidem, p. 240 122 Ibidem
123 Meoded-Danon L. & N. Yanay. (2016). Intersexuality: On Secret Bodies and Secrecy. Studies in Gender and
Sexuality, 17:1, p. 59
124 MacKenzie, D., & A. Huntington, & J.A. Gilmour. (2009). The experiences of people with an intersex condition: a journey from silence to voice. Journal of Clinical Nursing. 18:1775, p. 1776
125 Reis, E. (2007). Divergence or Disorder? : the politics of naming intersex, in: Perspectives in Biology and
Medicine, 50:4, p. 536
According to the Intersex Society of North America (ISNA), “about 1 in 1,500 to 1 in 2,000 births involve children born with what are termed atypical genitalia”127. Intersex could also be
defined as “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”128.
There are many different kinds of intersex situations as there are many different combinations possible (chromosomal, gonadic, hormonal, and anatomical characteristics). Being intersex never means having a penis and a vagina at the same time as many people picture hermaphrodites when they hear about it. Being intersex can also be lived in many ways as people can identify as male, female, both, neither, intersex or even other categories. Being intersex is neither a sexual orientation nor a gender identity. They can see themselves as out of the gender binary system, as men, as women, but always with “body’s sex chromosomes, organs, and/or hormones [which] don’t line up in a way that is typical for a ‘male’ or ‘female’”129.
Is hypospadias considered as an intersex trait? ISNA considers that hypospadias “falls under this rubric”130. Doctors usually believe that “intersex corporeality […] is characterized [among
others] by a lack of conformity between external and internal sexual anatomy […] but then presents “many diverse shades and variations”131.
“Intersex” is now the privileged term, although many other names have been used throughout history and were progressively abandoned for different reasons exposed below132. Even though
the term intersex will be used throughout this research, let me explain Elizabeth Reis’ new suggestion of the use of “divergence of sex development” (DSD) rather than ‘hermaphrodism’ or ‘disorder in sex development’ as it could be useful in the future.
Firstly, “hermaphroditism”, is “an [old] term” that is rather “vague, demeaning, and sensationalistic, conjuring mythic images of monsters and freaks”133. “Intersex” was then
127 Meoded-Danon L. & N. Yanay. (2016). Op. cit., p. 57 128 Ibidem, p. 59
129 Interact Brochure, p. 2
130 Reis, E. (2007). Op. cit., pp. 536-537
131 Meoded-Danon L. & N. Yanay. (2016). Op. cit., p. 60
132 MacKenzie, D., & A. Huntington, & J.A. Gilmour. (2009). Op. cit., p. 1776 133 Reis, E. (2007). Op. cit., p. 538
preferred by activists in the 90’s but sounded quite problematic for parents of intersex children “as it suggest[ed] a self-conscious alternative gender identity and sexuality”134 or “a third
gender, something in-between male and female”135. “Disorder of sex development” seemed like
a good answer to this problem as it is less sensationalist than “hermaphrodite” but does not relate to a clear identity and “instead highlights the underlying genetic or endocrine factors that cause prenatal sex development to take an unusual path”136. Nevertheless, Reis advocates the
use of “divergence of sex development” as the word “disorder” “implies medical conditions in need of repair, when some intersex anatomies, though atypical, do not necessarily need surgical or hormonal correction”137. The word “divergence”, on the contrary, should “satisfy intersex
people, their parents, and physicians”138. What with the parents?
Parents are very much concerned when it comes to intersex children as they must make a decision – or make the one not to make any – that has, no matter the choice, consequences for their child. Although parents must approve the surgeries that their children undergo, it needs to be remembered that they “receive only partial medical information from the doctors and experts [that] is unclear to them”139. Nevertheless, they “are forced to take action within a limited time
frame and to agree to genital surgical procedures on their babies’ bodies without receiving information on the future implications of the procedures and possible complications”140.
Moreover, parents, such as any individual, are part of a “cultural, social, and familial system that operates according to sexual and gender norms” and they are expected “to act to protect their children from ridicule and social isolation in the future”141. As a result, they usually
“cooperate with the medical protocol”142.
Mackenzie and al. argue that intersex individuals almost always have to deal with three different topics: “managing silence, coping with difference, and development of acceptance”143. Let’s
now explore those three themes and use Meoded-Danon’s work on secrecy around intersex
134 Ibidem, p. 535 135 Ibidem, p. 537 136 Ibidem, p. 535 137 Ibidem, p. 535 138 Ibidem, p. 536
139 Meoded-Danon L. & N. Yanay. (2016). Op. cit., p. 63 140 Ibidem, pp. 63-64
141 Ibidem, p. 64 142 Ibidem, p. 64
bodies as well as with the medical world and within the family144. The secrecy around intersex
“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. 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 […] (Derrida, 1995)”.145
No matter what their situations and experiences were, there was a “lack of information and nondisclosure of intersex condition”146. They all knew somehow that they were “[different]
without understanding why they felt or were treated differently from other children”147. It then
brought them “a childhood of uncertainty and sense of being imperfect […] [but also] anxieties and concerns […] from a self-realization of difference”148. Nevertheless, they all found out149.
It becomes problematic for intersex individuals as “the secret is controlled by an authoritative power”150 which then gives no power to the people holding the secret, even though they are the
first ones affected by it. Moreover, if we consider that “the body is our first possession in life”151, Simmel concludes that “an invasion of the body violates the whole of the
personality”152.
Coping with difference
School is a challenging place for intersex children as one does not only attend classes there, but also learns about relationships – friendship or love stories153. Being different is something that
they have to cope with. They use “various protective strategies” such as not participating in some activities “as they [can]not answer peers’ questions about differences in appearance”154.
This can go from withdrawing from a sport activity to “social isolation”155. In parallel, parents
also play a role as they sometimes allow their children not to go bathing with others for example,
144 Meoded-Danon L. & N. Yanay. (2016). Op. cit., p. 57 145 Ibidem, p. 62
146 MacKenzie, D., & A. Huntington, & J.A. Gilmour. (2009). Op. cit., p. 1778 147 Ibidem
148 Ibidem 149 Ibidem
150 Meoded-Danon L. & N. Yanay. (2016). Op. cit., p. 62 151 Ibidem
152 Ibidem
153 MacKenzie, D., & A. Huntington, & J.A. Gilmour. (2009). Op. cit., p. 1779 154 Ibidem
