The Intersex Baby From a Social Emergency to a Human Rights Challenge

Author: Marika Komboki Lancing

Human Rights Bachelor Thesis 15 Credits Spring 2018 Supervisor: Mikael Spång ABSTRACT

This paper aims to shed light on the intersex infant, a baby born with an unclear gender. The main goal of the paper is to discuss whether unnecessary gender normalizing surgeries on infants, also called intersex genital mutilation (IGM) that is not necessary to preserve the life or physical health of the infant is in the best interest of the child. Legal method will be used to frame the topic in a legal context and discourse analysis in combination with content analysis will be applied in order to understand the transformation of intersex, from being a social emergency to becoming a human rights issue. The use of the concept, the best interest of the child will serve as an analytical framework together with a theoretical framework consisting of queer theory. Together it will help to map out the human rights challenges regarding IGM as a socially constructed medical product that needs to be highlighted and prevented in order to secure the rights of the child. Hopefully, the concluding results will contribute to further awareness on the issue of unnecessary infant intersex surgery and frame it in a human rights context.

Keywords: Children´s Rights, Intersex Genital Mutilation, Jus Cogens, Human Rights, Activism, Queer Theory.

2 Acknowledgments

I would like to give my gratitude to the Students, Professors and Guest Teachers from the Human Rights Bachelor Program that provided me with input and different perspectives. I specifically thank my thesis supervisor, Associate Professor Mikael Spång for his patience and trust to develop my own ideas. I would not have been able to complete this study without his guidance and inspiring inputs.

I also thank my mother Maria Lancing and father Anestis Kombokis for their endless time of support throughout my life and during this Bachelor programme. I further thank my husband John Ekström for encouraging and believing in me and for always being there for me when I most need him.

Finally, I thank my beloved children, Nestor, Inga and Dante for inspiring me with their humble way of approaching life and its challenges.

3 List of Abbreviations

CAH - Congenital Adrenal Hyperplasia

CAT - Convention against Torture and Other, Cruel, Inhuman or Degrading Treatment

CRC - Convention on the Rights of the Child

DSD - Disorder of Sex Development or Difference of Sex Development

ECHR - European Convention on Human Rights

ECtHR - European Court for Human Rights

FGC - Female Genital Circumcision

FGM - Female Genital Mutilation

GIGESC Act - Gender Identity, Gender Expression and Sex Characteristics Act 2015

ICCPR - International Covenant on Civil and Political Rights

ICESCR - International Covenant on Economic, Social and Cultural Rights

IGM - Intersex Genital Mutilation

ISNA - Intersex Society of North America

LGBT - Lesbian, Gay Bisexual and Transgender

OII - Organization Intersex International

UDHR - Universal Declaration for Human Rights

UIIS – Unnecessary Infant Intersex Surgery

4 Table of Contents

Abstract……………………………………………………………………………………...…2 Keywords…………………………………………………………………………….…...……2 Acknowledgements…………………………………………………………………….………3 List of Abbreviations…………………………………………………………….……..……...4

1. INTRODUCTION………………………………………………………………………....7 1.1. Introduction of Topic………………………………………………………………….7 1.1.1. Terminology and Conditions……………..……….……….……………...……8 1.1.2. Frequency………………………………………….…………..……………..…9 1.2. Research Problem and Human Rights Relevance…………………………..…………9 1.3. Aim and Research Question……………………………………….…………………10 1.4. Previous Research………………………………………………………………...….11 1.5. Theory, Method and Material…………………………………...... …………....…13 1.6. Delimitations………………………………………………………………………....14 1.7. Ethical Aspects……………………………………………….…………………...….15 1.8. Chapter Outline…………………………………………………………………..…..15

2. THEORY…………………………………………………………………………...…….16 2.1. Queer Theory………………………………………………………………..………17 2.2. The Concept of the Child´s Best Interest……………………………………………18

3. METHOD AND MATERIAL……………………...………………………………….…20 3.1. Legal Method…………………………………...………………………………...…20 3.2. Discourse and Content Analysis……………………………………………….…....21 3.3. Material……………………………………………………………….…….……….23

4. BACKGROUND…………………….………………………………………………...…25 4.1. Before Modern Medicine…………………….……………………………………...25 4.2. Modern Medicine and Gender Assignment…………………………………………26

5 5. ANALYSIS………………………………………………………..……….…….………...27 5.1. Legal Framework…………………………..……………….……………..……...... …27 5.1.1. International Dimension…………………………….……………..………….27 5.1.2. National and Regional Dimension………………..…………………...……..28

5.2. From a Social Emergency to a Human Rights Issue.……………………….…...…30 5.2.1. Human Rights Activism……….……………………….………………….…30 5.2.2. Is IGM a Human Rights Violation? …………..…………………………..…32 5.2.2.1. IGM - a Western Form of FGM? …………..…………………….…34 5.2.3. The Right to Bodily Integrity……..…………………...…………….……….35 5.2.4. Consent……..…………………...……………………………………………….……36

6. CONCLUSION………………………………………………………….…………….….40

BIBLIOGRAPHY………………………………………………………….……………...... 42

6 1.1. INTRODUCTION

1.1. Introduction of Topic As a child, in biology class, I would learn about the XY and XX chromosomes that formed the genders of babies. What I was not taught however, was about the condition of intersex, and that there are babies being born with genitals halfway between male and female types every year. In short, intersex can be described as an umbrella term for people that are born with an unclear gender that do not fit stereotypical gender roles, such as man or female (Medlineplus 2018). The current praxis for intersex babies is medical treatment either by surgeries - a medical praxis that today also is referred to as intersex gender mutilation (IGM), hormone treatment or both (Coran 1991: 812-820). This thesis does not discuss gender normalizing surgeries that is needed in order to preserve the life or physical health of an intersex baby. It instead focuses on the issue of unnecessary, or as some say “cosmetic” infant intersex surgeries, aimed to change the genitals or internal bodily structures in ways that are not necessary to the life or physical health of the infant. To put it simply, the thesis discusses surgical intervention on infants with a purpose of creating heterosexual typically male or typically female gender characteristics. As an example, it could be a conversion of a “micro penis” into a clitoris, feminising the infant with hormones and creating a urinary opening where none exists, not in order to prevent the death of the infant but in order to make the child fit into a gender stereotypical role that meets the societal demands expected form the child. A friend once told me that considering the great variations of intersex and high number of intersex babies being born every year, gender should be seen as a spectrum rather than the stereotypical roles of typically male or typically female, it was this thought, together with the fact that there is little available information and awareness about intersex given in the Swedish societal context that made me interested in writing my thesis about intersex babies and the challenges they face from their first moment of breath. In order to reach my goal of highlighting the issue of unnecessary infant intersex surgery in a human rights context, I will apply a discourse and content analysis on the dimension of intersex activism and social movements that have contributed to many of the recent changes in the intersex arena. In order investigate whether IGM is in the best interest of the child, a legal method will be applied. The theoretical framework consists of the concept of the child´s best interest, combined with queer theory in order to map out the human rights challenges and problematise the binary constitution of sex which I find central to IGM.

7 1.1.1. Terminology and Conditions As explained in the introduction, intersex can be described as an umbrella term for people that are born with an unclear gender that do not fit stereotypical gender roles, such as man or female (Medlineplus 2018). The name intersex however is a contested term and the conditions varies. Therefore, I find it important to clear out the different terms and conditions from the start. Since intersex covers a variety of different biological gender variations I find it important to give a short explanation of the different names, conditions and the frequency. The terminology of intersex is under dispute and has no current consensus. Hermaphroditism, intersex, disorder of sex development, atypical sex characteristics, difference of sex development or diversity of sex development are some of the terms that are used for people born with intersex conditions. It is important to point out that intersex is different compared to terms such as bisexual or transgender. Intersex is a biological condition that has nothing to do with sexuality, an intersex person can be either straight, homosexual, bisexual or even asexual. Historically intersex people has been called hermaphrodites, this was mainly during antiquity, in stories and myths. At first not in a specific negative way but the term was later on perceived as stigmatizing, similar to “monsters” and “freaks” (Reis 2007: 536-537). Later on, in the twentieth century together with the development of modern science in the term atypical sex development and intersex was introduced and was later on followed by the term disorder of sex development (DSD). With an argument that the usage of a medical description can ensure better medical care for the patients and avoid gender identity politics (Reis 2007: 537- 538; Greenberg 2012a: 93) and some also found comforting in order to describe their differences as a disease, others find it stigmatizing and degrading, lately, medical practitioners and intersex activists have pointed out that instead of seeing intersex as a disorder it should be described as difference or diversity of sex development (DSD) (Radio 2018). Using a medical term would pathologize intersex people and further strengthen the belief that every person can fit into the binary sex system, this in itself can be seen as the main reason why intersex genital surgeries are performed (Spurge 2009:108; Greenberg 2012a:93). I chose to use the term intersex since labelling persons with “atypical” genitalia as having a “disorder”, or even as “different”, carries a risk of legitimizing IGM, and fails to recognize the heteronormativity and binary sex models that are one of the main causes of the practise of IGM on infants (Spurge 2009:108). Some scholars point out the necessity to consider each intersex case as an individual and refrain from universalistic approaches to the medical treatment of intersex, since intersex as such is not a specific medical diagnosis but rather an umbrella term for all that does not fit into a gender binary stereotypical role (Lee & Houk, 2006). This part will

8 provide an overview of the different Intersex Conditions. Intersex as a biological condition can be roughly categorized in three different groups: Chromosomal variations, gonadal variations and hormonal variations. Chromosomal variations mean the unusual configurations of chromosomes that vary from the typical XX/XY combinations. Examples for these are the Klinefelter syndrome and the Turner syndrome. People with gonadal variations have mostly typical chromosomal combinations but their testes or ovaries show unusual specificities. These include the appearance of ovotestes (both ovarian and testicular tissues), only one testicle or ovary and streak gonads (which do not function as either testicles or ovaries). People affected by syndromes that are caused by hormonal variations produce hormones in an unusual quantity or form. This can result in the feminization or masculinization of bodies with typical chromosomal configurations. Examples for intersex conditions that are caused by hormonal variations are the Androgen Insensitivity Syndrome (AIS) and the Congenital Adrenal Hyperplasia (CAH) (Greenberg, 2012a:13-14).

1.1.2. Frequency As explained in the introduction, it is said that there are approximately 1.7 percent of the population being born as intersex which is around the same number as there are red heads, however, the latest research shows that at least one in 300 children is born with a gender variation, visible to a paediatrician eye. Modern science now find that it can be as much as one person out of 100 that might have, or develop some form of gender variation, without knowing it, because they might not have a reason to find out (Aeon, 2018).

1.2. Research problem and Human Rights Relevance To surgically change an infant´s genitals due to cosmetic reasons has raised many questions for me. There are many contrasting things, such as the problem of the relation between medical knowledge and parental authority in relation to the intersex child. Another important aspect that has been debated is the right to consent and bodily integrity and the question of the child´s best interest. The main arguments against IGM that has been put forward in public debates are mainly the harmful consequences of the surgeries, these will be explained further in the analysis. The topic of human rights relates to the intersex baby and the practise of intersex surgeries in many ways. One of the most prominent aspects surrounding the topic of IGM is whether it is in the best interest of the intersex child and the problematic fact of an infant child not being able to give its consent to a performed irreversible surgical gender assignment, that they might be unsatisfied with, that may cause lifelong harmful, mental and

9 physical consequences. As described by adult intersex subjected to correcting gender surgeries as infants, the condition of intersex and repeated medical examinations can include violations of privacy and messages of shame. Intersex people have found themselves discriminated due to their physical condition, at first, these gender normalization surgeries were in fact a respond to correct the issue of discrimination and stigmatisation experienced by many, however, the medicalization of intersex is in itself also a stigmatisation. Torture is generally accepted to be a fundamental basic human right (jus cogens) that does not permit any derogation and torture has been a common expression used by the adults that was subjected to IGM as infants to describe their experiences in the hands of modern medical care, as will be explained later on in this thesis. Despite the alarms of human rights violations concerning IGM from multiple social movements, the surgeries are still occurring in large numbers all over the world, many times without being questioned. Some mean that the general acceptance of IGM is related to insufficient research (on the different outcomes from both surgical effects but also the effects of waiting or fully excluding a surgical or hormonal treatment) and information given to intersex parents. An increasing amount of intersex adults that was treated as children have expressed their despair over being forced into a gender that they did not want to live with, being sexually mutilated by parts that they would miss later on in life, feeling a loss of sexual sensation, being deprived the possibility to bear or create a child, or being subjected to repeated, surgical interventions and medical examinations. Ignoring or allowing IGM would be the same as claiming that intersex persons may not exist, without any modification, it shows an extreme stigmatization and discrimination of people born as intersex.

1.3. Aim and Research Questions The main purpose and aim with this study is to highlight and discuss infant intersex surgeries as a human rights issue, studies have shown that the IGM in many cases are irreversible, harmful and can create lifelong suffering. The problems and challenges surrounding the topic of intersex children are many and it relates to the field of human rights and the rights of the child on a fundamental level and therefore I argue that it needs to be highlighted. I wish to investigate how the legal framework looks like and in what way the recent writings, data and intersex stories witness for IGM to be unethical and unnecessary. The two main questions that will guide my study will firstly be a descriptive one which is related to the chosen topic, how does the legal framework regarding intersex surgeries look like? I wish to investigate the legal dimensions of intersex. I will do this by presenting the

10 different legislations that exists on a national, regional and international level. Hopefully the legal analysis can contribute to a better understanding of the legal framework of intersex. My second research question is more of the reflective type, relating to interpretation, explanation and consequences, asking whether the current legal framework is in the best interest of the child? This question will analyse the connection between IGM and human rights in the context of the intersex child, asking whether surgeries aimed to change an infant´s genitals is in the best interest of the child. A discourse analysis will serve to analyse the possible paradigm shift (also discussed in the background) from intersex as a medical issue and the intersex baby as a social emergency, to, today be viewed as a human rights issue. With the help of queer theory, the element of gender binarity will be discussed in the frame of intersex and its social challenges. I find the aim and purpose relevant for human rights studies since the practise of IGM, even though pressure from intersex activism, is left highly unregulated in most countries. It is also a matter of societies being unaware of the existence of intersex, or in many cases uniformed over the possible outcomes most of all due to the lack of clinical evidence and sufficient scientific research made on the subject of IGM, thus my aim and goal to highlight the problem of IGM and eventually conclude that it does more harm than good, that it should not be performed on infants that are unable to decide, give their own consent or at least be included in their future choice of gender identity. I hope that the two main research questions will allow me to grasp the different dimensions and levels of importance surrounding the topic of intersex and guide my study towards reaching my goal of highlighting IGM in a human rights context.

1.4. Previous Research The topic of intersex connects to a variety of different academic disciplines such as, ethics, bioethics, philosophy, psychology, sociology, medicine, biomedicine, politics, political science, and law. Main themes addressed in the literature is the decision-making process and the question of early gender assignment. Psychological health and gender identity are two main variations of importance. Together they form the contemporary context of the intersex debate and IGM. The predominant key actors that I have identified in the debate (a debate that has its epicentre in North America) is the medical practitioners, intersex activism or organizations and academic scholars. Much of the material published comes from clinicians, patient support groups and intersex advocacy organizations and feminist scholars with a critical perspective in the medical discourse surrounding sex and gender identity (Fausto- Sterling 2000; Morland 2004). Main methods used with respect to the issue of UIIS is

11 qualitative method since many of the intersex stories have been put forward through interviews, but also qualitative methods combined with quantitative methods. Much of the work done on intersex in the academic arena contains philosophical argumentations or lawyers using legal method, there are also of course various medical publications discussing the subject. The main theories taken by people with respect to issues of IGM is social theories or gender theories (Preeves 2003). The US discourse on intersex has a large participation of feminist scholars. The Intersex Society of North America´s (ISNA) large influence on intersex questions has made North America the country where most of the writings and research is done. During the last 10 years the traditional model of the doctor having a total control over the infant has been questioned. Those involved in the debate supports mainly three alternative models. The first model that has existed during the last 40 years emphasizes the need for early surgical and hormonal intervention to conform the child´s body to societal norms and minimizes the information given to the chid and parents to avoid psychological trauma. The second approach argues for postponing all surgical and hormonal treatments that are not medically necessary and instead allow the child the right to choose its own outcome regarding a surgical alteration at the time when the child has reached the age of consent. The last, more radical approach is against all type of interventions aimed for normalizing and argue for awareness and acceptance of intersex individuals. When it comes to the consequences of IGM, there are both physical and psychological dimensions, however much of the literature fails to acknowledge the trauma and psychological distress connected to IGM. I found three articles that analysed the roots of psychological trauma and distress with a conclusion of it depending on either a feeling of being different from others or a response to inadequate surgical results factors related to the social context such as shame, identity and stigmatization but without mentioning the role played by medical actors, repeated examinations etc. (Oelschlager et al. 2015). The research made on the literature regarding the chosen subject has shown that there is a lack of long-term research on intersex operations as a basis for medical the practice. Many researchers also ask for more stories from intersex people themselves, the qualitative studies available are few and with very few informants. In a Swedish context, such research is not least necessary in view of the research gap that exists in general. To drive intersex issues in Sweden, more research is also needed on the type of inclusion of intersex people in legislation on (gender) identity as well as the law of discrimination. It also requires more research on what the public has for attitudes and knowledge about intersex, which is of importance since 1.7% of all children are estimated to be intersex. I place this study in the context of the intersex baby with a multidisciplinary

12 approach combining materials from different disciplines with an aim to elaborate on the human rights issues and challenges of IGM from a multidisciplinary perspective. It will acknowledge the trauma and psychological distress connected to IGM, this is where I aim to “fill an academic gap” with my study.

1.5. Theory, Method and Material I have chosen to work with my research questions in an analytic way, studying texts that debate the issue of intersex. In relation to my two research questions, mentioned in chapter 1.3. I have chosen a theoretical framework consisting of queer theory. It will be used to clarify the perspectives of UIIS and it follows from the problematisations of gender binarity in relation to UIIS. The concept of the Child´s Best Interest will serve as an analytical framework from which the research questions are further explored. This theoretical perspective will govern my concluding results. I chose to use queer theory since it includes many elements relating to gender, and especially the debate of gender binarity which I find central to my chosen topic. Since the study discusses the vulnerability of intersex children I have chosen to add the concept of the child´s best interest as an analytical framework in order to apply a child centred approach. Legal Method and Discourse analysis combined with Content Analysis is the chosen strategy for processing the theory in relation to the selected empirical material. All of the methods mentioned will together serve as a strategy to reach my results. Since my aim and purpose has a general character of highlighting the topic of intersex and showing its transformation, discourse and content analysis will be of good use. There is also a strong legal dimension to the research questions, thus, the choice of legal method. The predominant key actors that I have identified in the debate (a debate that has its epicentre in North America) is the medical practitioners, intersex activism or organizations and academic scholars. I found them all of great importance and luckily the academic multidisciplinary nature of human rights allows me to integrate them all. This study will therefore not only use legal materials but also materials published by medical practitioners, academic scholars, intersex activists and intersex advocacy organisations. To organize the chosen material, I have chosen to divide the analysis into two different dimensions. One dimension that analyse the legal framework and one dimension that analyses the intersex baby in a human rights context, in order to map out the transformation or paradigm shift of intersex from a social emergency to a human rights issue. Even though I have chosen to divide my analysis into two different dimensions they share similarities, the

13 purpose of a division is mainly due to the fact that I needed to separate material with different character.

1.6. Delimitations When it comes to the terminology of the chosen subject I have chosen to use the term intersex, which at the moment is the most general and established concept used internationally, including intersex people themselves (Amnesty International, 2017:14). The term intersex can be understood as something that goes beyond gender. The main reason why I chose to use the term intersex is because it does not clearly highlight intersex people as being invalid or “less valued” than the stereotypical gender categories man and woman but also because other concept are based on a kind of normality from which intersex deviates from. An increased focus on the deviation might give the perception that gender ought to be adapted to and strive to be normalized. Another neutral term is atypical gender, however what is defined as "normal" are not as clear. On the other hand, both normal and typical can be regarded as linguistic synonyms in the sense that they refer to something as "common occurrence" which also has a subjective side. What is considered, interpreted, perceived and judged as being normal is highly subjective and influenced by different norms where the range of variation in the typical lies imbedded within each context. I aim to have an international human rights discussion on UIIS and therefore the international legal documents serve a high purpose. It has however been hard to find texts and writings outside of the western Euro-American debate. Country and population wise I have been forced to limit myself geographically since most of the texts concerning intersex is produced in Europe and Northern America and since the majority of the debate is taking place in Northern America I had to make a geographical delimitation that covers Europe and Northern America, with a few exceptions concerning the discussion of alternative approaches such as an option of third sex visible in passports in South Africa and Nepal. Thus, it has been difficult to make a study like this internationally fair and coherent. However, lived experiences and intersex stories should be seen as evidence of mistreatment and a critique against the traditional models. Other boundaries that I have set for the study is to not investigate infant intersex surgeries that is needed to preserve the life or physical health of the infant child, neither am I looking at examples where the intersex child has expressed a wish to undergo an intersex surgery, or the issue of adults undergoing an intersex surgery. Instead the focus is on intersex infants and young children that are not able to talk or give a consent of their own on whether to be treated or not, the human rights issue that is being investigated

14 therefore only concerns the unnecessary gender normalization surgeries performed on infants, not the surgeries made in order to safe life, or prevent illness. Timewise I had to limit the study to include the development of intersex as a human rights issue from the 1990´s up until today, this is because of the scope of the thesis and the given time period. When it comes to material I have chosen to include some of the medical publications of importance but since medicine is not my specific academic field I have limited myself to the medical publications discussion UIIS in a way that can be related to the academic field of human rights.

1.7. Ethical Aspect This thesis is based on written material. There are no conducted interviews or research participants that needs to be under a veil of consideration. Any deception or exaggeration about the aims and objectives of the research have been avoided. There have not been any affiliations, sources of funding or conflicts of interests, if so is the case, they will be declared. Any type of communication in relation to the research has been done with honesty and transparency and any type of misleading information, as well as representation of primary data findings in a biased way has also been avoided. I have aimed to maintain objectivity in discussions and analyses throughout the research.

1.8. Chapter Outline The introductory chapter of this thesis has served as an introduction to the chosen research topic, 1.1 has a brief section introducing the topic, 1.2 discussed the research problem and the human rights relevance of the thesis, 1.3 was dedicated to the aim and research questions, 1.4 brought up discussions on previous research and the position of my thesis within this research field, 1.5 stated the chosen theories, methods and material, 1.6 stated the delimitations, 1.7 had a discussion on the ethical aspects and this section. And this section (chapter 1.8), will outline the rest of the thesis chapters: Chapter two will provide information on the theoretical framework for the analysis and relate to the theoretical traditions and framework relevant to the chosen topic. It motivates the chosen theory and reflects on the choice of theories. Chapter 3 contains information on the method and material used for the analysis, 3.1 will focus on legal method, 3.2 will discuss discourse analysis and content analysis and 3.4 gives an overview of the chosen material. Chapter 4 provides essential background and intersex will be placed in its historical context. Chapter 5 is devoted to description and analysis of the material both empirical and theoretical material. The discussions of the results will serve as the core of the thesis, the research questions are here applied to the chosen material, given the

15 methods, as mentioned before it will be divided into two dimensions: It is divided into two main parts, chapter 5.1. dealing with the legal dimension using legal method in order to analyse the legal aspect considering bodily integrity and other tensions. The other main part, chapter 5.2. is dedicated to exploring the discursive dimension, describing the transformation of intersex from a social emergency into a human rights issue and placing the intersex child in a human rights context with an embedded discussion of the result from the analysis. The analysis and discussion will eventually lead to the concluding chapter 6 that will provide a summary and conclusion. Last there is a bibliography with the list of references of literature and other sources used in the thesis.

2. THEORY There are many theories that could have been relevant for this study, for example legal theories, social science theories, philosophical theories and ethical theories. The theories used on the topic of intersex often depends on the academic disciplines. As mentioned in chapter 1.4. the majority of the debate around Intersex is concentrated in the US, thus, the main theories used in the US context, social theories and gender theories are also the main theories used regarding the topic. When reading scholarly articles and books I found gender and social theories as interesting. Gender does not exist in a vacuum, it is constantly interpreted and thus it is inseparable from societal factors, such as perceptions about gender, relationships, and social functions. It also means that the perception of what is interpreted as male and female, varies between the different contexts of a particular society. To integrate all aspects into the analysis will of course not be possible. The chosen theories are as mentioned in chapter 1.5. queer theory and the concept of the child´s best interest. Since the topic of intersex is highly related to gender, I wanted to choose to use queer theory as a theoretical framework and by this also address the binary construction of gender. This study discusses IGM on infants and children, not consenting adults, therefore there is a high importance for this study to acknowledge the rights of the child and apply a child-centred approach, which is why I chose to add the concept of the child´s best interest that will serve as an analytical framework. My wish is that both of the chosen theories will function as tools that clarifies the perspective of the thesis and in that sense, it follows from the problem posed earlier in the introduction.

16 2.1. Queer Theory As explained earlier, Queer Theory will function as a theoretical framework for this study and within queer theory I will specifically address the binary construction of gender. One of the scholars that I will look more closely on is Judith Butler, as one of the most prominent scholars presenting queer theory I found her discussions suitable for the chosen research questions. Queer theory emerged in the early 1990´s by scholars such as Eve Kosofsky, Diana Fuss, Adrienne Rich and Judith Butler out of the fields of queer studies and women’s studies but in the beginning many times with elements from Michel Foucault. In short, queer theory is based on the fact that gender are subjective subjects. Queer means roughly "across”, and an important part of queer theory is to challenge the societal stable gender binary contradictory categories (Sedgwick 1994: 34). The overall aim of queer theory is to function as a tool to deconstruct contemporary ideals of societal norms (Wolters 2013) Queer as theory is based on the United States and homosexuality research (Lesbian and Gay Studies) as well as (lesbian) feminist research, which in turn is based on activist movements for LGBTQ rights (Ambjörnsson 2016: 22-24 & 36). Queer theory can be seen as a way to go beyond concepts and partially deconstruct them (Sedgwick 1994: 12). This does not mean that the queer theory is undermining the fact that discrimination etc. can be done on the basis of categorizing (Marinucci 2010: 35), instead, as Patricia Elliot argues it has an aim to question and challenge the dominant forms of identity (Elliot 2010: 27). In Sweden, the term queer has been criticized for lacking the connection to sexuality (Ambjörnsson 2016: 190) and the term queer can thus be said to focus on a critical attitude to normal and be used as a tool to question already given truths in society (Ambjörnsson 2016: 15-16). Even if perceptions of genders are contextual, I argue that using queer theory will bring important aspects into the discussion and also maybe highlight possible connections between gender and society, which is important for understanding the situation of intersex people. The theory should also be understood as a critical lens, which I think is necessary in the overall discourse around intersex, which is defined by medicine and medical perspectives and voices. It is difficult to approach the topic of IGM without questioning the medical discourse. Discussions about intersex must to some extent relate to medical discourse and perspectives. I argue that a radical opposite perspective is needed, because the issue of surgical gender assignment has its centre in the medical discourse, its power, information and decisions today affect intersex babies, many times without being questioned. One of the most prominent contemporary queer theorists is Judith Butler. In her work she challenges the conventional notions of gender and criticizes the contemporary “outdated perception of gender”. In her theory of gender performativity, she

17 means that societal perceptions of gender binarity is limiting and adheres to dominant societal constraints. Instead she connects gender with performance and means that it is ongoing and out of individuals control, it is not the individual creating the performance it is the performance creating the individual. What is interesting to notice is that when applied to infancy and young childhood, the theory of gender performativity will argue that who the child is and what it will become is predetermined from the moment of birth or even before (Butler 1999:25; Butler 2006:25; Butler 2011). I will use the theory of gender performativity since it contradicts John Mooney´s optimal gender policy that was one of the reasons for the birth of IGM described earlier in chapter 1.4. a model that through intersex stories have shown to be a non-optimal model due to the numerous unsatisfied intersex adults that were subjected to IGM as children.

2.2. The Concept of the Child´s Best Interest The UN Convention on the rights of the Child raise the following aspects as relevant for the best interests of the child:

“the child’s views and aspirations, the identity of the child, including age and gender, personal history and background, the care, protection and safety of the child, the child’s well- being, the family environment, family relations and contact, social contacts of the child with peers and adults, situations of vulnerability, the child’s skills and evolving capacities, the rights and needs with regard to health and education, the development of the child and her or his gradual transition into adulthood and an independent life and the last aspects is as quoted “any other specific needs of the child” (General Comment no. 14, 2013).

I would say that there are three main elements of the best interests of the child. First, it has a substantive right guaranteeing that the interests of the child compared to other interests must be given more importance in decision-making (CRC Committee, GC, 2913, para 6a:37). Second it is legally interpretative principle ensuring that the interpretation of the CRC must effectively serve the best interests of the child (CRC Committee, GC, 2913, para 6b) and third, it has a procedural element of determining the best interest of the child in each individual case, with an evaluation of possible consequences for the child due to the results of decision, also justifications of the suitability of the decision and why it serves in the best

18 interest of the child (CRC Committee, GC, 2913, para 6c). Another important aspect of the child´s best interest is state obligation. There is a clarification made on state obligation related to A3.1 of the CRC which basically establishes three types of state obligations. First, to ensure that the best interests of the child is taken as a primary consideration for undertaking public actions (CRC Committee, GC, 2913, para 14a) Second, to demonstrate how the best interests of the child is addressed before decisions and how the final decisions is in the best interests of the child (CRC Committee, GC, 2913, para 14b) Lastly, states must act to ensure that the private sector prioritizing the child’s best interests during decision-making processes (CRC Committee, GC, 2913, para 14c). This short overview shows that the views of children must be taken into account for every decision-making that affects these children, an issue closely related to my thesis topic, aim and research questions, in order to connect both of my theories I argue that that children are a diverse group, with different needs and characteristics. The individual identity of every child including their gender characteristics should be respected and taken into account (CRC, GC Art.8). Other factors that I find central in the CRC and the concept of the child´s best interest in relation to my topic is that the protection and care of children as well as their safety and integrity must be respected, including, well- being and development, protection from violence, injury or abuse. Except from safety and integrity, possible effects on the child’s future well-being must according to A.3.2 be taken into consideration (CRC Art. 3.2, 19, 32-39). A central aspect in the decision-making process of a child is the protection and improvement of the child´s health. To ensure this, the different alternatives or medical options has to be presented and evaluated for the intersex child that is granted the right to participate in the decision making with an informed consent (CRC, GC Art. 24). There are numerous aspects in the concept of the child´s best interest that together with CRC can serve as tools to work with my topic in the analysis- I will use this analytical framework as a supplement to queer theory since I need to include a perspective that will represent the intersex child. The concept of the child´s best interest is often used in relation to the intersex debate. Except from the intersex child (that often lack the opportunity to speak or decide for themselves), other central actors of importance when discussing authority is the child´s parents and medical practitioners. Boyse et al. highlights the importance of medical practitioner´s duty to correctly inform, communicate and support the intersex parents with an emphasize on bodily integrity and autonomy. In one of his studies he concludes that intersex parent´s decisions on IGM is highly influenced by the medical discourse, such as the information and advices given by health care practitioners. The participating parents all claimed that they would have wish a more expressed a desire for more thorough and clear

19 information regarding intersex and their children´s health. Some of the parental experiences regarding surgeries included feeling pressured, influenced by social factors and the necessity of gender assignment, and that the decision for IGM was close to no choice at all Some of the suggested ways of improving the communication was to include a dialogue on the benefits of delaying IGM until the child has reached a proper age to decide for themselves, support, advices and approaches to children that chose not to undergo surgery such as communication with other intersex parents or support groups and the opportunity to meet therapists that are experienced and well informed regarding the issues of IGM (Boyse K, et al. 2014). I find it central to apply and analytical framework that apply the child´s perspective since infants and children are left without a voice in their decision of IGM. The concept of the child´s best interest is suitable for my analysis since it sets out guidelines on how to assess and determine the best interests of the child.

3. METHOD AND MATERIAL Regarding the material, I have chosen to not only include legal material but also other certain kinds of material such as intersex stories and expressions from intersex activism since it will bring other aspects and perspectives into the study. This has in turn affected my choice of methods to include not only legal method but also discourse and content analysis. I was interested in looking at intersex from a discursive approach and wanted to add another dimension to the analysis. Moreover, I found legal method to be insufficient in relation to the analysis of paradigm shift, and the second research question. With this in mind, I found that Legal Method together with Discourse and Content analysis would be the most suitable tool in order for me to pursue my study.

3.1. Legal Method Legal method will serve as my main tool when analysing legal documents concerning intersex surgeries. In this way, the framework but also effectiveness of the international legal system will be elaborated on. Legal method is a qualitative research method that describes a certain body of law and examines how this body applies to a certain legal situation. The ‘qualitative’ factor stands for the exploratory part where researchers trace and uncover a concrete phenomenon in a few in-depth cases, as opposed to statistical number-based research that takes account of a wide range of cases in a broader way. Indeed, some information cannot be communicated in terms of numbers, and the qualitative research was designed to cover non-

20 mathematical notions such as assumptions, motives, decisions or stances. This method provides an analysis of the law as an instrument to find stages of judicial reasoning, development or legal enactment; it evaluates the degree of compliance or legality of some specific cases or simply underlines an existing legal problem.

While determining what the law really is, the legal method systematically reviews legal sources, the text of the law itself, and subsequently compares it to a specific situation to which the law relates (McConville & Chui 2007: 18-21). As such, it is an appropriate method for the purpose of the present thesis, since it can examine the implementation of the theoretical legal framework in a real-life situation which corresponds with the aim of the thesis. However, this method could be also “seen as normative or purely theoretical (McConville & Chui 2007: 19) in the sense that it is lacking empirical evidence when focusing on a relatively isolated occurrence of the phenomenon on a limited scale. Nonetheless,

“what makes research empirical is that it is based on observations of the world, in other words, data, which is just a term for facts about the world. (...) As long as the facts have something to do with the world, they are data, and as long as research involves data that is observed or desired, it is empirical” (McConville & Chui 2007: 18).

Consequently, as long as there is enough data, the research is deemed empirical even though it might be problematic to apply the findings on a broader, generalized level. At the same time, it is a method that allows evaluating the legality of a certain situation and seeing the grey areas in legal provisions which is the initial presupposition of this study leading towards explanations of this state, and therefore this choice of method is justified and well-chosen in relation to the research problem. I find legal method to be a useful as a toolkit that will help to analyse and understand legal documents. I will also use it to determine the appropriate weight that should be used to different sources of law in relation to intersex.

3.2. Discourse and Content Analysis The reason why I decided to combine Legal Method with a discourse and content analysis is because the issue of intersex, is a discursively constructed entity in itself. Discourse analysis can thus function as a tool to critically engage with the text as a means to gain a better understanding of social life (Potter & Wetherell, 1987, p. 32) by acknowledging social and

21 linguistic expressions (Boyle, Smith, & Liao, 2005, p. 576). Content Analysis helps me identifying and grouping categories that I find in the material, which will thus be compiled in text format, presented in themes. This has been useful for me in order to organize my study. Identifying themes objectively and systematically increases the credibility of the study. However, it is worth pointing out that the scope and selection of my research means that I do not assume that my results constitute a universal truth, but rather the point is to highlight the issue of IGM and provide alternative perspectives. Bengtsson presents four steps in content analysis. 1: decontextualization: to group the content. 2: Recontextualization: To check if all text answers the question, otherwise it should be left. 3. Categorization: Here, the themes and categories are identified. 4. Compilation: Presents a summary of themes / subtitles and categories. Bengtsson also emphasizes the importance of the researcher's neutral relation to the results of the analysis (Bengtsson, 2016:11-12). The first three steps will serve as a sorting method for me. When all the themes are summarized, the result is presented and analysed with my chosen theory. A clear limitation with content analysis, however, is that it tends to show the pronounced rather than the unspoken. Adding discourse analysis, based on that aspect, worked better with my theory because it focuses on the unseen (Bergström & Boréus, 2012:81). Ji Young Cho and Eun-Hee Lee also claim that the content analysis can be used manifest or latent, thus analyzing the surface or underlying meanings. It reinforces my use of using content analysis to show the paradigm shift but also to construct critical theory, as the analytical method is appropriate for data that requires a certain degree of interpretation (Cho, Ji Young & Lee, Eun-Hee, 2014:4-5). Since content analysis gives me the opportunity to capture shades and attitudes in combination with the small scope of the study, I consider this advantageous in relation to a quantitative method that compares the statistics produced, as this would not give me enough interesting results based on the size of the study.

Discourse analysis is the study of communication through language (Johnstone, 2008) when communication is considered as “symbolic human interaction” (Bloor & Bloor, 2007, pp. 1- 2). The main tenet of Discourse Analysis is that variation in language indicates function and construction where an active selection process is at work that includes and excludes information (Potter & Wetherell, 1987; Fairclough, 1992). A key theoretical assumption of Discourse analysis is that “mental realities do not reside “inside” individual humans but rather are constructed linguistically” (Perakyla, 2011, p. 531), challenging ideas of ‘essential’ or ‘natural’. As described by Fairclough; discourse Analysis focuses on the “social effects of discourse” (Fairclough, 1992, p. 4), guided by the intention to find the purpose and function

22 of this selection process, and has been used previously in sociology to investigate social problems (Bloor & Bloor, 2007). Categories such as Intersex are created and therefore inherently social, even if maintained through complex and subtle discourses (Potter & Wetherell, 1987). Foucauldian Discourse Analysis acknowledges the meanings of texts within a “cultural and gendered context” (Boyle, Smith, & Liao, 2005, p. 576). Any aspect of discourse is “simultaneously a piece of text, an instance of discursive practice, and an instance of social practice” (Fairclough, 1992, p. 4). The weakness of discourse analysis is that it is limited by the skills and knowledge of the researcher (Potter & Wetherell, 1987) and by polysemy; there can never be one true correct interpretation of the text (Johnstone 2008; McKee 2003; Silverman 2010, 2011). Discourse analysis presents ‘a way of reading’ rather than following a stringent methodology, reflecting Potter and Wetherell’s (1987) assertion that discourse analysis “is a broad theoretical framework, which focuses attention to the constructive and functional dimensions of discourse” (p.169). The success of discourse analysis does not rely upon having a large sample size. With its emphasis on criticality, the social construction of meaning, the “constructed nature” and the advertising of “specific policies and evaluations” (Potter & Wetherell, 1987, p. 175) of text. The discourse that I have chosen to look at is the discourse of intersex activism. I have studied it by looking at writings from intersex activists and organisations.

3.3. Material When searching for relevant material that would represent and answer my study questions I found numerous of documents and writings that was of high importance in order to analyse the chosen topic and answer my study questions. The chosen material has roots in different dimensions such as the legal, academic and medical dimension but there are also many expressions from intersex activism, social movements and organisations. The main and primary material consists of previous research that can be related to the subject through a human rights perspective but also conventions, declarations, resolutions, legislation and preparatory work, legal cases, decisions by national and international authorities and organizations, parliamentary records. As secondary material, reports and surveys of human rights organizations and organizations have been used to highlight the human rights violations suffered by intersexuals today and the lack of legal protection. Here are also human rights conventions and medical reports. These were mainly used in the introduction but also appear in the section "previous research". I have used academic books, analytic articles in newspapers, articles in academic journals. In order to provide information on the development

23 of intersex genital surgeries secondary sources by scholars of different academic disciplines (Dreger, 1998; Fausto-Sterling, 2000(a); Kessler, 1998; Mak, 2012) reports and surveys of human rights organizations and organizations have been used to highlight the human rights violations suffered by intersexuals today and the lack of legal protection. The academic material used in this thesis is visual throughout the paper, but mostly in the theory chapter where ideas of queer theory and other theoretical traditions regarding intersex is brought up. As mentioned in chapter three, I will use the concept of the child´s best interest as an analytical framework in my analysis together with queer theory. General Comment No. 14 of the Committee on the Rights of the Child (CRC Committee) will provide me with the framework to evaluate whether the legal measures discussed are in the best interests of intersex children. When it comes to the material in the analysis of the legal dimension I will rely on both primary as well as secondary sources. Different legislation and court decisions will be the objects of my analysis. I will further analyse legal approaches that have not yet been implemented but only proposed. Publications of different legal scholars and civil society organizations will provide me with information on the implications of the different legal measures examined (E.g.: OII-Germany, 2013; Tamar-Mattis, 2006; White, 2014; Greenberg, 2006; Greenberg, 2012(a)). I have mainly used writings by lawyers and scholarly lawyers, legislative journals and comments made by lawyers on the current legal situation. The experiences of intersex persons with genital surgeries during infancy will be discussed by relying on the expression made by activists is analysed by looking at intersex stories and organisations. Material published by ISNA, Amnesty and Human Rights watch has been used in order to understand the different channels used by intersex activists, these are also the actors that has provided with perspectives from intersex people and their own stories. By integrating the intersex activists and their stories avoids the reduction of intersex persons to their physical conditions and depicts them as multifaceted human beings. The publications by bioethics Alice Domurat Dreger, biologist Anne Fausto-Sterling, historian Geertje Mak and psychologist Suzanne J. Kessler will guide my work on the history of intersex genital surgeries in order to provide information on the development of intersex genital surgeries. I will also draw on secondary sources by scholars of different academic disciplines (Dreger, 1998; Fausto-Sterling, 2000(a); Kessler, 1998; Mak, 2012). The authoritative statements by international, national and local human rights institutions will guide my evaluation on weather IGM is a human rights issue.

24 The discussion on the human rights of the children concerned that are interfered with or potentially violated by intersex genital surgeries will mainly rely on statements and reports of institutions from the Council of Europe, the European Union and the United Nations (UN) (E.g.: CAT Commitee, CO, 2011, para 20; CRC Committee, CO, 2015, paras 42(b) and 43(b); Special Rapporteur on Torture, 2013, para 88). Additionally, I will draw on publications of national or local bodies working on human rights, such as the German and Swiss Ethics Committees (German Ethics Council, 2013; Swiss National Advisory Commission on Biomedical Ethics, 2012) and the San Francisco Human Rights Commission (Arana, 2005). There are a few more international, national and local institutions working on human rights that have addressed intersex genital surgeries (Human Rights Commission New Zealand, 2008; Italian National Bioethics Committee, 2010; WHO, 2015) but for several reasons these will not be discussed. Firstly, because of the scope of the thesis and also because they apply a medical perspective instead of looking at it from a human rights-based approach (Italian National Bioethics Committee, 2010. See e.g.: pp. 17, 19-20).

4. BACKGROUND This chapter will give an overall presentation of the background, placing intersex in its historical context up until today. The main changes has been the modern medical discourse and the power of intersex activism.

4.1. Before Modern Medicine The views on intersex and on how to treat or not treat them varies across time and cultures. In the ancient times hermaphrodites could be used for a person with supernatural powers (Siculus 1935). Some Northern American tribes considered intersexuals as being two-spirit people that were socially valuable for the society, in some tribes they were considered spiritually gifted, and sometimes two-spirit people helped raise children. During the reservation system, Christian beliefs were forced upon natives, their children were brought to government schools were girls were dressed in dresses and boys had their hair cut off (Ncai.org, 2018). With the emergence of biology as an academic discipline in the late 18th and early 19th century, the scientific knowledge about the biological reasons for atypical sex characteristics increased. This was accompanied with the establishment of the belief that all unusual sex variations must be erased through medical interventions. between the years 1870- 1915 doctors believed that the gonadal tissue, whether it was testicular or ovarian, was the determining factor for assessing somebody’s “true” sex (Dreger 1998:29). That meant that

25 persons with testes were declared to be men and persons with ovaries to be women, regardless of their body appearance or gender expression (Dreger 1998: 154). Later on, scholars claimed that dysfunctional glands cannot be the sole criterion for assessing someone’s sex. Instead, one also had to take into account other factors such as the general body appearance (Dreger 1998: 165)

4.2. Modern Medicine and Gender Assignment Once modern medicine in the late 19th century enabled medical practitioner to change genders as less ambiguous, intersex surgeries became the common medical practice (Mak 2012:163, 171), at first only on adults but later on also on children. Many believe that the reasons for this shift was due to a combination of the advanced surgeries together with the theories presented in the 1950´s by John Money, a psychologist that concluded that a child´s gender identity is determined by the child´s environments reactions to the assigned gender role. This traditional model of infant intersex surgical gender assignment is called the optimal gender policy (Fausto-Sterling, 2000, p.44-46). This policy supported a child rearing approach with the belief that in order to ensure the healthy psychosocial development of children with atypical genitals, their genitals must be surgically altered to look either typically male or female soon after their birth. The policy was based on a study of an infant baby boy that due to a failed genital circumcision was raised as a girl (Fausto-Sterling 2000:63-64; Kessler 1998:23) John Money published several of papers claiming that the gender assignment was a success even for non-intersex babies. Money adopted the view that someone’s gender identity is completely malleable until the child reaches the age of 18 months (Fausto-Sterling 2000: 63; Kessler 1998:14). Intersex genital surgeries were claimed to be necessary so that parents could be properly convinced about their child’s sex and could raise their child with one stable gender role. In order not to raise the doubts of parents whether the sex assignment of their child was the “right” one, doctors often kept the parents in the dark about details of their child’s intersex condition (Fausto-Sterling 2000: 63-64; Kessler 1998:23). Discretion was in general an essential element of the early Optimal Gender Policy. Money and his colleagues propagated that parents should not tell their intersex children about their intersexuality or provide them with detailed information about their intersex condition. This would allegedly only confuse them and obstruct a healthy psychosocial development (Kessler 1998:29; Schweizer/Richter-Appelt 2012: 107-108). The Optimal Gender Policy meant in practice that a child with ambiguous genitalia was assigned to the sex that was feasible to bring about through genital surgeries (Kessler 1998:18-21). When it was easier to create typically female

26 looking than male looking genitalia through genital surgeries, the child would be assigned female. Since phalloplasty (Oxford dictionaries 2015) was in general more difficult to undertake than feminizing medical procedures, around 90% of the children born with atypical genitals were assigned female and subjected to feminizing treatment (Chase 1998:192). The high number of children that were assigned to the female sex was also due to the fact that organs, the child would be “turned into” a girl. For the doctors, the capacity to procreate was considered more important than to have intact genitals (Fausto-Sterling 2000:5; Ehrenreich 2005:121-123). Contrary to the general approach, in these cases the gonads were the determining factor for the sex assignment, not the genitals. Many years later, it was revealed that Moneys most famous case was fundamentally flawed. The sex-reassignment of the boy earlier mentioned suffered a life of depression and was never satisfied with his assignment as a girl. His twin brother developed schizophrenia and died in an overdose and the boy that the study was based on eventually committed suicide in his adult life (Reimer 2004).

5. ANALYSIS This analysis will present one legal dimension and one discursive dimension regarding intersex, with an intention to provide an analytical framework to the reader, however, with a focus on the paradigm shift of intersex from being a social emergency into transforming to a human rights issue . The analysis will evaluate and discuss the intersex baby in a human rights context. Hopefully it will map out the human rights issues and challenges that is needed in order to secure the rights and health of intersex children.

5.1. Legal Framework 5.1.1. International Dimension On a legal international level, the legal standards and human rights for intersex has emerged during recent years. UN human rights authorities are discussing the issue in country and thematic reviews, WHO is opposing IGM (Eliminating forced, coercive and otherwise involuntary sterilization 2014) and in 2015, 12 UN agencies condemned “unnecessary surgery and treatment on intersex children without their consent” in a joint statement (OHCHR 2015). In order to connect the ethical and medical discussion concerning the intersex infant, I wish to place it in the context of the child´s best interest. For the best-interests determination, the Convention on the Rights of the Child Committee proposes a list of procedural safeguards and guarantees that the contracting state needs to implement (CRC, GC, para 85-99). First off, in order to properly identify the interests of the children being affected by the measures and

27 ensure their participation in the decision-making, special attention needs to be placed on transparent communication with the children (CRC, GC, para 98-91). Second, the facts and information about a particular case need to be obtained by well-trained professionals (CRC, GC, para 92). Third, in order to avoid negative effects for children due to prolonged decision- making, the procedures or processes impacting children have to be prioritized (CRC, GC, para 93). Fourth, the decision-makers must be qualified professionals who are experienced in the subject of concern. The group that is assessing the child’s best interests needs to be, if possible, a multidisciplinary team (CRC, GC, para 94-95). Fifth, the child‘s right to have appropriate legal representation before courts or equivalent bodies must be ensured (CRC, GC, para 96). Sixth, any decision that affects a child must be motivated, justified and explained. If the final decision diverges from the child’s view on the specific issue, the reasons for the discrepancy must be disclosed (CRC, GC, para 97). Seventh, mechanism to appeal or revise the decision must be established (CRC, GC, para 98). Eight, the adoption of a measure that affects children demands a child’s- rights impact assessment (CRIA). The CRIA is a procedure that is meant to predict the impact of the implemented measures on the enjoyment of the rights of the children affected. The outcome of the CRIA is to be publicly available and has to contain recommendations for amendments, alternatives and improvements (CRC, GC, para 99). The list of procedural safeguards proposed by the Convention on the Rights of the Child Committee will serve as tool when approaching the topic further in this essay.

5.1.2. National and Regional Dimension Regionally and domestically, legislations can look different, some countries prohibits the practise of IGM while others fail to address the human rights issues related to it. The medical treatment of intersex babies in Sweden is based on the guidelines of the International Consensus Conference on Intersex held in 2005. Today, in Sweden, the surgical interventions on intersex children should be performed at an early age, up to 18 months, according to Swedish treatment practice (Barnläkarföreningen, 2007:4) together with informed consent from either patient or legal representative, unless it is an emergency (European Union: European Agency for Fundamental Rights, 2015:7). The view of intersex children as an emergency and informed consent is still controversial. The need for a specific gender for official birth registration in Sweden may push the medical practitioners to pursue either male or female surgery, currently there are only two possible gender categories, male and female. The possibility of obtaining a fully informed consent (from the intersex baby´s parents) is also

28 controversial since the parents are under pressure by the medical practitioners (Commissioner for Human Rights, 2015:37). Forcing a child into a gender identity through gender registration on birth certificates can also be considered to a violation on the right to personal identity (Commissioner for Human Rights, 2015:33). Sweden has received criticism from one of the largest international hbtq organizations International Lesbian, Gay, Bisexual, Trans and Intersex Association (ILGA), for not having introduced (ILGA, 2015) legal protection to guarantee human rights for intersex people. ILGA released a report on the human rights situation in Europe for HIT people, which is a comprehensive report. Sweden is criticized for not having taken any of the measures that ILGA considers to be the best for intersexual persons, which, inter alia, means that surgical procedures and medical treatments on children are still being carried out and that intersex persons do not have explicit protection from discrimination and hate crime. They also argue that Sweden must amend laws regarding recognition of legal gender so that it is based on self-determination instead of medical intervention (ILGA, 2017). In Nepal and South Africa Intersex is considered as a third gender, also visible in their passports. Annette Brömdal has conducted a study in South Africa where she examined international conventions and the inclusion/exclusion of intersex children in the South African legal system. She also investigated how non-medical institutions consider the surgical procedures in relation to its human and civil rights as well as doctors' own attitudes through thirteen semi-structured interviews (Brömdal, 2008:11,14,26,78-90). The results show that intersex children are considered to be abnormal and differently. Brömdal emphasizes the importance of inclusion of intersex children in the judicial system (Brömdal, 2008:57,111). Despite this, South Africa, at the time of Brömdal's investigation, was the only country in the world that included intersex as a legal gender, although today it is not considered to help prevent surgery. Brömdal also demands long-term follow-up research (Brömdal, 2008:74,76,85,112). As the first country banning non-consensual medically unnecessary surgeries on intersex children, Malta now has a law stating:

“It shall be unlawful for medical practitioners or other professionals to conduct any sex assignment treatment and/or surgical intervention on the sex characteristics of a minor which treatment and/or intervention can be deferred until the person to be treated can provide informed consent” /GISEC Chapter 540

29 A medical intervention which is driven by social factors without the consent of the minor, is referred to as illegal, a violation of bodily integrity and health. In addition, issues such as identity are at risk since the surgeries are depriving the intersex child´s right to form their own identity. Also, even in cases where the child requests a surgery the Government of Malta must “ensure that the best interests of the child as expressed in the Convention on the Rights of the Child be the paramount consideration.”

5.2. From a Social Emergency to a Human Rights Issue As mentioned in the background Milton Diamond was one of the first to argue for the intersex infant or child´s right to consent and against the medical treatment of intersex infants. He radically recommended medical practitioners to refuse non-consensual intersex surgery and highlighted the need to avoid secrecy and stigmatizing and risks for lifelong suffering and numerous of surgical procedures. Other central argument against IGM are the negative impacts told by intersex people and their wish of not wanting to have undergone a surgery and the feeling of being violated and deprived of their right to privacy. (Diamond, 2013). This part of the analysis will sort out the major changes and show a paradigm shift of intersex from being a social emergency to transforming into a human rights issue.

5.2.1 Human Rights Activism The uncertainty and lack of evidence of effectiveness was expressed many years ago. In the 90´s there were still no reports with sufficient long-term follow up comparing either of the different procedures or the choice of not having a procedure (Coran, 1991, p.820) and just like the findings of the failed cases related to John Money, other intersex persons emerged into public debate, many of them strongly criticized the existing medical protocol which they claimed caused physical and psychological harm and human rights violations (McClintock2004:257). Milton Diamond also highlighted the need to avoid secrecy and stigmatizing language that might cause shame for the intersex child. In an article written in 2013, he clearly states his disapproval of medically unnecessary surgeries. Due to the limited scientific certainty and risk for lifelong suffering and numerous of surgical procedures he argues for the intersex infant or child´s right to consent. Another proof of the negative impacts of IGM are the stories told by intersex people that express that they wish they did not undergo a surgery, that they feel violated and deprived of their right to privacy and consent (Diamond, 2013). The belief that intersex genital surgeries are necessary for the child to form a stable gender identity and to avoid harassment and stigmatization due to “atypical” genitalia was

30 further challenged in the 1990s when the intersex rights movement started to form itself in North America. The activists’ goal was to draw the attention of political decision makers and doctors to the psychological and physical harms caused by intersex genital surgeries on children. By claiming that these surgical interventions were violations of the right to bodily integrity or self-determination of the children concerned, they framed intersex genital surgeries for the first time as human rights concerns (Preves, 2004, p. 271). The Intersex Society of North America (ISNA) was the first formally established intersex organization although it first intended to function as a peer support group, the organization quickly turned into a political movement whose main demand was to end intersex genital surgeries performed on children (Chase 1998:197-198). In 2008 the organization changed its approach to fight alongside doctors into fighting against them. This decision resulted in the creation of the Accord Alliance that followed the approach of the Chicago Consensus Conference (Accord Alliance; ISNAb). Today there are two main approaches in the intersex activist movements. One approach seeks the alliance with the LGBT rights movement and presumes that in order to end intersex genital surgeries, the societal perception of appropriate sex and gender behaviours must be challenged (Greenberg 2012a: 94-95). The other approach is to identify with the perspectives of the critical disability rights movement and to pursue a re- consideration of the definition of what a “normally” sexed body is and better medical care for intersex persons (Koyama; Levine 2014:178). Due to ISNA’s and other intersex rights organizations (Organization Intersex International) advocacy, physicians have started to change the medical practice since the early 2000s (Dreger/Herndon 2009:205-206). The consensus statement from 2006 demonstrated the willingness of many doctors to take into account the experiences of intersex persons and revise the medical protocol regarding intersexed genitals. Despite the fact that many doctors have become cautious about medically unnecessary, painful and irreversible genital surgeries on non-consenting intersex children, it is assumed that many children with atypical genitals still are subjected to medical correcting procedures (Greenfield 2012a:21). A study conducted in 2007 in the area of Seattle found that the majority of parents still gives their consent for their child to undergo genital surgeries (Parisi 2007: 355). The same study held that if the parents opt for surgical interventions on their children’s genitals, the doctors usually perform it (Parisi 2007:355) even if it is on non- consenting children. During recent years, starting from 2012 up until today, literature from a broad area of disciplines (medicine, ethics, humanities, politics, law, activists and sociology) mainly published in Europe and America (a few from Asia and middle east) are basically all highlighting the harmful effects (physiological and psychological impacts) of gender

31 normalization surgeries. A common concern and theme is lack of evidence of the benefits of IGM on children and infants. There is therefore a common argument that more research is needed on the outcomes of surgical procedures on infants and children (Diamond, 2013:2–7, Mouriquand, 2014:8–10, Abaci, 2015, Burgmeier, 2016, Gomez-Lobo, 2016). The arguments for IGM was that physicians suspected possible risks of cancer, however the latest studies and findings conclude that risks varies depending on the variation of intersex, more importantly studies have shown that the risk is notably low in infants and children and surgeries (if wanted) can in most cases be postponed up until the right age for the intersex person concerned to participate in their own decision of undergoing a surgery or not and most importantly which gender to choose (Abaci, 2015:9-12).

5.2.2 Is IGM a Human Rights Violation? Earlier human rights institutions have expressed their concerns over IGM in relation to infant´s inability to perform informed consent. These institutions have focused on three types of legal measures. Some human rights institutions have advocated for implementing flexible sex registration procedures that would allow intersex persons to register or change their legal sex according to their self-identified gender (council of Europe, 2015a:9; German Ethics Council 2012:166-167). Other institutions have called out for implementing legal measures that would determine when early age intersex genital surgeries could be performed (CAT, CO 2011, para20; Special Rapporteur on Torture 2013, para 88). And others have promoted the inclusion of intersex in national anti- discrimination laws (Council of Europe 2015a:9, UNHCHR 2015, para 78h-79c). The main issues connected to IGM is that they are irreversible, may cause infertility, incontinence, loss of sexual sensation and contribute to mental and physical suffering (Council of Europe: European Court of Human Rights, 2012:1). The interventions have been lifted, among other things, as a form of torture, crimes against a person's bodily integrity, the right to privacy and health, and that they violate the right to self- determination and personal autonomy and that the interventions affect the right to life. According to Amnesty International, intersexuals are protected by the above named, conventions as well as by the discrimination clauses (Council of Europe: Commissioner for Human Rights, 2015:a, p. 20-21 & 30-31. Amnesty International, 2017, p. 10 & & 42-48. discrimination clauses). Amnesty also points out that states that has ratified the Children's Convention allows for stronger protection for intersex children and that surgical procedures are not an emergency, which means they violate Article 3.1 based on the best interests of the child (Amnesty International, 2017, p. 10). Other aspects raised by intersex people are the

32 lack of information and access to medical records (Amnesty International, 2017, p. 31, Council of Europe: Commissioner for Human Rights, 2015:a, p. 14). A problem for intersex people's human rights is undeniably that they are not necessarily included in rights, anti- discrimination and hate crime legislation or in documents relating to citizenship (Council of Europe: Commissioner for Human Rights, 2015:a, p. 33). The convention that can be used more specifically today is ETS No. 164, which deals with discrimination on the grounds of genetic heritage (Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, European Treaty Series- ETS No.164, 4 April 1997). Intersex persons are exposed today as well for discrimination and violence because of ignorance (Council of Europe: European Court of Human Rights, 2012, p. 1). Amnesty claims to stigmatize around intersex constitutes a major obstacle to intersex people's ability to organize or support one another (Amnesty International, 2017, p. 19-20). Despite the increased visibility of intersex people and their claim to end non- consensual intersex genital surgeries, international human rights mechanisms as well as lawmakers and courts continued to overlook the legal aspects of intersex genital surgeries until the late 2000s. Finally, in the last ten years NGOs, international organizations, and slowly even national legislative bodies, have started to consider intersexuality in their strategies, policies and laws. If intersexuality was recognized and discussed at all, it was mainly perceived as a social or medical problem but rarely as a legal issue. Whereas around the end of the 19th century when lawmakers and courts still played a significant role in the determination of the sex of intersex persons, the improvement of medical techniques since the beginning of the 20th century made physicians the primary arbiter in the process of establishing the sex of these persons (Mak, 2012, pp. 165-172). In “Lessons from the Intersexed”, Kessler argues that the health care approach has not been based on the child´s best interests and needs, rather it has been based on the belief that binary sex is a social necessity, although existing facts and evidence of the harm associated with the medical interventions made on intersex infants (Kessler, 1998, p.74). Moreover, Kessler argues that the traditional model has been based on cultural gender norms determined on external factors (Kessler, 1998, p. 12). In the Five Sexes: Why Male and Female Are Not Enough, Fausto-Sterling discusses intersex both historically and culturally, and concludes that intersex persons that lived before the 1960s, talked and dreamt of a world where variation is celebrated (Fausto-Sterling, 1993, p.22-24). In 1985 she published Myths of Gender: Biological Theories about Women and Men, which is a discussion on how brain, genes and hormones work to break down the myths of female inferiority (Fausto-Sterling 1985, p.13-

33 123). Alice Domurat Dreger´s study of the biomedical treatment of hermaphrodites argues in line with Kessler that the medicine's decision on surgery has its roots in the stereotypical beliefs about the heterosexual male and female sexuality and that the purpose of genital surgery is related to the cosmetic area and in achieving social result (Fausto-Sterling, 2000, p. 48 & 80). Sterling also points out that between 30 and 80 percent intersex people that undergoes genital surgery has to be subjected to more than one operation which also can lead to increased physical damage to the body (Fausto-Sterling, 2000, p. 85-86) Iain Morling argues that Kessler's work (1990) and Fausto-sterling´s work (1990) 1985), managed to change how critics talk about intersex treatments during a 5-year period, from claiming they were wrong from a feminist point of view to instead concentrate about the fact that intersex as a category is worth recognition in itself (Morland 2005, p. 57). Since the beginning of the intersex rights movement, activists have claimed that intersex genital surgeries that are performed for “cosmetic” purposes on children violate the basic human rights of the children concerned. But there is still no clarity on the issue, only one national court, the Constitutional Court of Colombia, and no international human rights court has ever decided on the question whether genital surgeries performed for “cosmetic” purposes on intersex children would legally constitute a human rights violation, it is thus, unsettled whether irreversible surgical alterations of intersexed genitalia for “cosmetic” purposes, which can lead to painful and traumatic experiences, are proportionate to the purpose of protecting children from social stigmatization.

5.2.2.1. IGM - a Western Form of FGM? In a report made by The Human Rights Watch the risks and consequences of IGM on infants is described and explained to include the following aspects:

“scarring, incontinence, loss of sexual sensation and function, psychological trauma including depression and post-traumatic stress, anaesthetic neurotoxicity, sterilization, the need for lifelong hormonal therapy, if needed repeated surgeries, irreversible surgical that the intersex infants might be dissatisfied with during their lives” (HRW 2017).

With all of these risks in mind, who does societies continue to subject babies to IGM? Özbey and Etker argue that the parental decision making in many cases might be influenced by cultural and religious factors. By analysing the westernized gender assignments, Özbery and

34 Etker identifies elements of racism and colonialism (Özbery H, Etker S, 2013). This aspect is also evident in intersex claims from intersex people of colour on an Intersex Awareness where highlight these issues of bodily integrity and autonomy but also experiences of exploitation and violence (Long, L, Wall, S. 2016). Human rights scholar, Melinda Jones argues that IGM is a western form of FGM. Jones describes that while FGM (that often is undergone in Africa, Middle East and the Philippines) is an international violation against the rights of the child and that there exists a general consensus on the harmful nature of FGM many ignore or accept IGM. She compares FGM with IGM and points out the similarities of discrimination, cruel and inhumane treatment, many times similar to torture. One of her conclusions is that just as FGM, IGM is a cultural practise that should be prevented in order to secure the rights of the child. Ammaturo discusses, as I previously mentioned, the upcoming human rights discourse surrounding intersex in Europe. They argue that the debate has essentially been intertwined with the prohibition of "female genital cutting" (FGC) and the regulation of (religious) circumcision, especially in resolution 1952, adopted in 2013, dealing with children's right to physical integrity. Paragraph 7.5.3 of this resolution deals with the surgery of intersexual genitals. The resolution therefore constitutes one of the first attempts to lift and legally include intersex in international law. Ammaturo also criticizes international law because there are currently no regulations regarding practice when an intersex child is born (Ammaturo, 2016, s. 606, 592-595 & 603). The warning signs Ammaruto raises around the new resolution is to fear that there is an anticipated priority system where FGC comes before intersex normalizing surgery, and that the right to bodily integrity can be interpreted in a number of ways which may harm the purpose (Ammaturo, 2016, s. 596).

5.2.3. The Right to Bodily Integrity Theorists in the field of intersex and human rights agree that the medical practices are based on heteronormal assumptions about sexuality and gender / gender, and power dynamics. (Ammaturo, Francesca Romana, 2016: 602). Preves believes that the importance of childbirth at birth is part of the child's opportunity to enter into a social world (Preves, 1998: 1-2). Julie Greenberg believes that the treatments are heterosexual and argues that it these surgeries demonstrate that it is more important for men to penetrate than to reproduce and for women to carry children and become penetrated by a man, even though the fact that they get their sexual pleasure destroyed. Other examples are the "insufficient penis" which often is operated on and transformed into a girl, even though it destroys the child's ability to reproduce. Anette Wickström, notes that intersex children are more often "operated for girls" than boys because

35 it is considered "easier" to “dig a hole” than to create a vagina (Zeiler, Wikström, 2009:12). The focus often lies in the external genitalia. Zeiler and Wickström, as well as Kishka-Kamari Ford argues that the medicine's decision on surgery rests at these assumptions (Zeiler & Wikström, 2009:11-12)

5.2.4. Consent According to Greenberg, there are basically three overall positions on treatment practices; those who oppose the operations, those who are “pro” and then there is a group placed "in the middle". The latter argues that parents should be entitled to a fully informed consent that the medicine should not have the power over the lives of individuals as they have today but to completely remove surgery was wrong due to the absence of any studies showing that a person who grows up with genitalia not read as being typical male or female will not suffer less psychological harm than a child who has been modified (Greenberg, 2006, p. 104-105). The latter argument, like the medicine itself, focuses on external genitalia and the child's social reality in relation to its visual body, but misses that neither parents nor the children today are far from being considered sufficiently informed to have a fully informed consent (Roen, 2004, p.127-128). Ford argues further that the decision is neither sufficient nor sufficient information, nor is it voluntary Information is often retained, and it is not a competent decision, in the sense that the patient expresses appreciation for that (Ford, 2000, p.487, 474-475). Ford also points out that when the procedure lacks legally informed consent, it constitutes an intervention against the child's bodily integrity. Ford also criticizes the legal doctrine that parents are considered as a fact to determine what is the best interests of the child, which is not a legal decision (Ford 2000, p.469, 474, 478-479). Katrina Roen further discusses that facts such as “that the child could be subjected to bullying” may be legitimate reasons for the operation of a child if it weighs over the physical and psychological pain of repeated interference. Roen also asks whether it is ethically justifiable to operate a child based on the fact that parents want it based on having a good relationship when the child grows up and whether the medicine has a responsibility to question their own decisions about surgery based on gay / queerphobic prejudice (Roen, 2004, p.128). Ford does not agree with the argument that children's social reality could be valid arguments because collective stories from intersex people show that genital normalization surgery performed without the consent of the patient is not beneficial and that such arguments ignore those who have been subjected to voices. In addition, he argues that medicine must comply with certain ethical requirements, including the requirement for "independent benefit" for the child, which it currently does not

36 do at the moment (Ford, 200, p.483, 469). Amnesty also points out that an adult's judgment regarding the child cannot stand under the rights of the child under Article 3.1. The Children's Convention, which deals with the best interests of the child, must be paramount (Amnesty International, 2017, p.10). The legal arguments and inter-personal voting in spite of Roen makes one point in asking the question: how should intersex men get optimal care in a gender-borne world? (Roen, 2004, p.127). This reasoning is among others Francesca Romana Ammaturo, who discusses the difficulty of moving from a medical discourse to a human rights discourse where there is a problem that the child's right to bodily integrity endorses the so-called "utility approach" where doctors assume they are dealing with a crisis situation (Ammaturo, 2016, p.603). Despite the fact that Ford has pointed out that the operations do not comply with the "independent benefit" for the child for a number of reasons, neither are the operations to be considered an emergency; There is no life threatening with a big clitoris or little penis, instead, Ford claims that it is the doctors and parents are experiencing a crisis situation, but that's not the case for the child, which doctors also admits (Ford 200, p.476- 477). Annette Brömdal agrees that when the healthcare is "confused" about the sex of the child, they are confused about the gender identity of the child, which is perceived as a crisis (Brömdal, Anette, 2008, p.36). Despite this, it seems, according to Ammaturo, to be difficult to raise arguments about the rights of the child. Both Ammaturo and Roen therefore show how difficult it is to argue and create change in relation to medical doctrine and discourse as well as strong cultural norms, and Roen's questions are considered relevant in this context. Based on current power plans and norms, what should we do to actually help those affected? Iain Morland and others also point out that there is no good or bad side, regardless of position (Fausto-Sterling, 2000, p.76), as also Karkazi's investigation shows; that no clinics working on this have anything but the best interests of the child (Karkazis, 2008, p.267). Morland claims that arguments made by critics, the need to maintain bodily integrity as the ethical pillar of medicine (Morland, 2008, p.425) often comes from a dichotomic view of the “old treatment” such as having to do with the external look and cosmetic appearance, and the “new treatment” (to wait with surgery) is about interior, depth and embodiment. Morland instead argues that these models does are intertwined, cosmetic surgery can also contain aspects such as depth and interior. According to Morland there is no clear difference in the correction of intersex on the one hand and on the other hand “living with intersex variations” since the distinction of internal/external is unclear. To Morland it is not only a question of normalizing intersex children visually in order function socially and psychologically. The ethical dilemma lies in being forced to live with a medical correction of what Morland describes as intersex

37 variations. Morland means that the ethical contra argument against the modification of intersex bodies should be grounded in a sensitivity that goes straight through the distinction of internal/external instead of having to do with the maintenance of bodily integrity (Morland, 2008, p.427-429). As presented earlier, both in the theory chapter but also in the analysis there are three main elements in the concept of the child´s best interest. First, the substantive right guaranteeing that the interests of the child compared to other interests must be given more importance in decision-making (CRC Committee, GC, 2913, para 6a:37). Second, the legally interpretative principle ensuring that the interpretation of the CRC must effectively serve the best interests of the child (CRC Committee, GC, 2913, para 6b) and thirdly, it has a procedural element of determining the best interest of the child in each individual case, with an evaluation of possible consequences for the child due to the results of decision, also justifications of the suitability of the decision and why it serves in the best interest of the child (CRC Committee, GC, 2913, para 6c). Only after the implementation of the different elements presented earlier (CRC, GC, para 47) together with procedural safeguards can one claim that IGM is in the best interest of the child, which it clearly is not at the moment. The arguments for IGM was that physicians suspected possible risks of cancer, however the latest studies and findings conclude that risks varies depending on the variation of intersex, more importantly studies have shown that the risk is notably low in infants and children and surgeries (if wanted) can in most cases be postponed up until the right age for the intersex person concerned to participate in their own decision of undergoing a surgery or not and most importantly which gender to choose (Abaci, 2015, p.9-12). A problem regarding the efficiency of the legal protection of the intersex child has also been claimed. The intersex international law is explained as having a nature of soft law since they are non-binding and lacking any legally binding tools. This will in turn also make it more difficult to prohibit IGM on national levels. An example of this is expressed in a report from last year:

“In 2016, the US Department of State issued a statement on Intersex Awareness Day acknowledging that: “Intersex persons routinely face forced medical surgeries that are conducted at a young age without free or informed consent. These interventions jeopardize their physical integrity and ability to live free.” International or national laws do not specifically protect children against such abusive operations, but several areas of law prohibit conduct that could be interpreted to include medically unnecessary intersex surgeries” (HRW 2017).

38 Another important issue worth mentioning is that health care is a social and political issue. In a situation where it is neither legal nor moral, how do we know the things that we know? The answer is medical knowledge. Psychologist, doctors and other health-care professionals are asked for their opinions, depending on the answers, states and populations form their opinions. If the knowledge of intersex are based on cultural norms and discriminatory beliefs then the problem however is that these health care professionals lack the needed training, knowledge and understanding to take into account the specific health needs of intersex persons, provide appropriate healthcare, and respect the autonomy and rights of intersex persons to physical integrity and health. Donzelot argues that if we are allowed to brush aside “the customary naive remonstrances” regarding the success of a doctrine, we can raise the following questions: firstly, what made the field of relational and social problems in which psychoanalysis had to deploy so amenable to it? Secondly, by what means was it made operative? And lastly, what were the effective properties of the psychoanalytic discourse, which enabled it to prevail over the competing knowledge? His answer is that law, medicine, psychiatry, and religion all contains techniques for managing conflictual relations and maladjustments. Moreover, these techniques often goes with heavy-handed solutions with a direct constraint and therefore also a high cost in terms of resistance to their application. He then argues that psychoanalysis can offer a non-coercive regulatory direct, or indirect response which enables the question of responsibility to be included. Also, as he puts it “it introduces the possibility of a non-degrading corrective action and a principle of autonomous resolution of conflicts”. If Donzelots answer would be a part of the dilemmas of infant genital normalization it would include a principle of “floating” values and norms (in relation to one another) (Donzelot 1979: 24), which in my opinion would give individuals a certain amount of freedom between familial values and social norms. Unfortunately, traditional gender stereotype beliefs and societal pressures are often represented by, not only doctors but also parents of intersex children. Even though there can be a lack of medical indication and despite the fact that such procedures may violate human rights standards, there are still many surgical interventions made in absence of the child´s own consent. All surgical interventions that are made despite of a health threat are cosmetic normalization dealing with visible appearance that rarely comes without medical consequences.

39 6. CONCLUSION By viewing the timeline and theories from the 50´s up until today there has been a shift from intersex being viewed as a medical issue to be considered a human rights issue. This study has aimed to show how the intersex baby, first considered as a social emergency, by time has become an urgent human rights issue. As explained in the analysis IGM contribute to various human rights violations, such as the right to bodily integrity, the right to self-determination and the right to consent but most of all it stands in conflict with a jus cogens rule, the prohibition of torture and ill treatment. Both national and international human rights bodies have made measures that leads to the conclusion that UIIS can be classified as a human rights violation (Arana, 2005, p. 17, Special Rapporteur on Torture, 2013, para 88, Special Rapporteur on Health, 2009, paras 46, 49) and the role played by intersex activism has played a crucial role in explaining IGM as not only unnecessary “cosmetic” interventions but also harmful practices that basically ignores fundamental human rights for the intersex child (CRC Committee 2015, paras 42(b), 43(b)). Despite the recent social and legal pressures, practitioners continue to pathologize intersex and argues for normalizing gender surgeries as the best solution for the intersex infant. It is thus of high importance to point out that medical care has a duty to place the intersex child as the one and only rightful decisionmaker regarding IGM and provide objective information on non-surgical and surgical outcomes to the parents in question. Moreover, this study concludes that all forms of surgical interventions before the child has reached the right age to give consent has a high risk to be harmful and unethical to the intersex infant. More research and information regarding intersex should be prioritized in order to prevent future human rights violations of intersex children. In the previous chapters I have analysed legal measures that could impact the enjoyment of human rights by intersex children in order to ensure that the child’s best interests is taken into account. Other aspects that is of great importance is to take the children’s views, according to their age and maturity, into account. According to the position of intersex rights activists and the CRC Committee, intersex genital surgeries performed on children are harmful practices; and harmful practices are never in the best interests of the child. Therefore “cosmetic” intersex genital surgeries performed on non- consenting minors would need to be legally prohibited in all circumstances. Malta’s GIGESC Act is the first national legislation that generally prohibits intersex genital surgeries and an important step for ensuring the human rights of intersex children. The integration of similar steps such as the application of the GIGESC Act in other countries could be a starting point to ensure that best interests of the child are being considered as a primary consideration when deciding on intersex genital

40 surgeries. Children's rights should not concern what society or families wants for its adults, but what is in the child´s best interest, self-determination and what children want for themselves. Instead of relying too much on rights more focus should be on engaging children and young adults to play a part in the fulfilment of human rights. As David Archard concludes in Children “empowering young people may well require fundamental changes to our social and political institutions.' Such changes will only be possible, however, if children's rights are understood as part of a greater effort to eradicate basic inequality”. Discriminatory beliefs and socio political constructed mechanism with stereotypical normalizing characters is in many ways hindering the development for human rights initiatives.

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