DSD Population (Differences of Sex Development) in Barcelona BC N Area of Citizen Rights, Participation and Transparency

An analysis of the different realities, positions and requirements of the intersex / DSD population (differences of sex development) in Barcelona BC N Area of Citizen Rights, Participation and Transparency

An analysis of the different realities, positions and requirements of the intersex / DSD population (differences of sex development) in Barcelona

Barcelona, November 2016

This publication forms part of the deployment of the Municipal Plan for Sexual and Gender Diversity and LGTBI Equality Measures 2016 - 2020

Author of the study: Núria Gregori Flor, PhD in Social and Cultural Anthropology

Proofreading and Translation: Tau Traduccions SL

Graphic design: Kike Vergés We would like to thank all of the respondents who were interviewed and shared their knowledge and experiences with us, offering a deeper and more intricate look at the discourses and experiences of the intersex / Differences of Sex Develop- ment community. CONTENTS

CHAPTER I 66

An introduction to this preliminary study...... 7

The occurrence of intersex and different ways to approach it. Imposed and enforced categories...... 14

Existing definitions and classifications...... 14

Who does this study address?...... 17 The intersex/DSD community and their inclusion in LGTB policies: whether or not it belongs in the LGTB(I) group...... 20

The main problems and needs of the parties involved...... 25

From people with intersex variations or DSD:...... 25

For specific syndromes:...... 33

Input from parents...... 38

Input from professional health psychologists...... 40

In search of answers...... 41

The end of secrecy and concealment...... 41

In healthcare:...... 42

Awareness and integration from a psychosocial perspective...... 55

Training and education among professionals...... 59

Bureaucracy and administrative procedures...... 61

Participation in associations...... 62

Educating in diversity The dualism of dualities...... 65

CHAPTER II 68

Intersex in the framework of European and international human and sexual rights policies...... 69

Intersex/DSD individuals in Spain’s legal framework...... 74

Major controversies...... 76

The dangers of polarisation and the single story...... 76

Gender policing...... 82 The right time for surgery, the decision-making process and informed consent...... 83 CHAPTER III 87

Some initiatives put into action in other contexts ...... 88

Making specific proposals and/or recommendations...... 98

CHAPTER IV 105

Conclusions...... 106

Bibliographical References...... 109

ANNEXES 112

Index of abbreviations...... 113

Methodological notes ...... 114

Medical Glossary...... 115

Information bulletin for interviews...... 119

Script of interviews ...... 120

Social healthcare questionnaires...... 122 CHAPTER I AN INTRODUCTION TO THIS PRELIMINARY STUDY

What position do people with inter- According to the 2014 municipal regis- sex variations/DSD (differences of sex ter of the INE (National Statistics Insti- development) occupy nowadays in the tute), the population of the municipality social fabric, in public and healthcare of Barcelona amounted to 1,602,386 policies, at school and in the media? inhabitants. If we make a estimate, in The response to this question clearly reference to Fausto-Sterling’s more relates to the frequency with which generous statistic, it would mean that cases of different sex development the number of people in Barcelona who present themselves within the gen- are intersex or have DSD would equate eral population, yet it also relates to to 27,240 people. If we use the more the stigma and taboo that accompany modest incidence rate of one case in people with DSD. The question about every two thousand, there would be frequency arises time and again, and 801.2 people in the city of Barcelona delivers controversial answers. This with intersex variations. But, beyond 7 gives the impression that, in order for it hypothetical estimates, Barcelona has to be valued within a social framework, been and continues to be a city of ref- Area of Citizen Rights, Participation and a fact must be supported by statisti- erence in Spain, due to its long history Transparency cal weight. For Gina Wilson, President and experience in caring for people An analysis of the different of Organisation Intersex International with intersex variations/DSD, both in realities, positions and requirements of the (Oll) Australia, even the most wide- the medical and associative fields. intersex / DSD population spread figure of one case in every two in Barcelona thousand, does this community no We can strive to overcome the unease favours. According to Wilson, it rein- and discomfort associated with inter- forces the idea that intersex is not a sex by mapping it out. This requires common problem among the general us to remove and rid ourselves of the population and that people defined as fundamental categories and concepts intersex are a minority, unusual and so we can look for those who defend rare, a product of human variation. and/or label themselves differently, Biologist, Anne Fausto-Sterling (2000), those who may or may not recognise is responsible for the other most widely that they are included in specific cat- aired statistic. The author estimates egories by professionals and experts in the prevalence of intersex at around medicine, psychology, sociology, etc. By 1.7%.i However, taking into account surveying and mapping out people with that this only includes hospital statis- intersex/DSD, we can make a wide vari- tics, we could only imagine how much ety of voices and isolated experiences this figure would increase if we were to heard, even those that are conflicting. include all of the people who had never been down the medical route. In fact, the secrecy, decentralised healthcare, lack of patient monitoring and super- vision from medical professionals, in addition to, all of the people with differences of sex development who have not been diagnosed or have not attended a medical consultation, means that it is impossible to speak of reliable statistics. Research into intersex variations has The network of associations is weak called for terminologies and scenar- and is usually comprised of patient ios to be explored that are, for the groups, support or mutual aid groups, most part, unknown, and even reject the majority operate at a national the concept of intersex or the assort- level (Support Group for Androgen ment of DSD/SDA (defined as dis- Insensitivity Syndrome and Other orders, alterations or differences in Related Syndromes —GrApSIA (as sex development). Here, we are talk- known by its Spanish acronym)—, ing about groups and people who are the Spanish Association of Congen- identified with specific diagnostic or ital Adrenal Hyperplasia, Alejandra nosologic labels, such as Klinefelter Grandes Turner Syndrome Associa- Syndrome (KS), Turner syndrome tion, Klinefelter Syndrome Mutual Aid (ST), congenital adrenal hyperplasia Group, a.m.a.r. association, etc.). The (CAH), complete androgen insensitiv- only association that operates at a 8 ity syndrome (CAIS) partial androgen regional level is the Catalan Associ- Area of Citizen Rights, insensitivity syndrome (PAIS), May- ation of Klinefelter Syndrome (http:// Participation and Transparency er-Rokitansky-Kuster-Hauser (MRKH) www.ascatsk.org/) and the AFAPAC

An analysis of the different syndrome, enzymatic deficiencies or association (Association of Relatives realities, positions and gonadal dysgenesis - mixed, complete, and Sufferers of Growth Disorders)ii, requirements of the intersex / DSD population or partial Swyer syndrome, (GD), Ster- which is registered in Catalonia but in Barcelona oid 5-alpha-reductase deficiency, CAH attends to people at a national level, 17-OH deficiency, micropenis, hypo- and also assists some families and spadias, ovotesticular DSD, mutation of adults with Turner syndrome. In Cat- the NR5A1 gene, etc. (medical descrip- alonia, these associations are hosted tions of some of these are detailed in by two federations: FECAMM (Cat- the annexed documents). alan Federation of Rare diseases) and FEDER (Spanish Federation of Rare Diseases). These groups and institutions play a definitive role in managing the pursuit of support and care, offering information about the most experienced specialists, leading patients to, or informing them about patient referral programmes to multidisciplinary units in other communities, securing finance or funding, promoting social integration, and raising the visibility and awareness of this phenomenon, etc. Although it will be detailed later in the methodology annex, broadly speaking, the field work carried out is based on:

1. 39 interviews with key respondents: 2. A discussion group comprised of activists, adults and mothers from a) Those who, through their pro- support groups, and one person fessional activity, offer a diverse who is not involved in any associa- vision and broad knowledge on tive network. the topic (12 interviewees) The interviews aimed to identify the b) Representatives of institutions routes that people predominantly and intermediary bodies for the take to search for help, healthcare and care of intersex/DSD people (6 assistance, either through the usual interviewees) medical channels, or via other routes 9 or alternative treatments, within the c) Representatives of Catalan free public service framework, or Area of Citizen Rights, Participation and associations (or, in cases where through private organisations. Sim- Transparency

the association for a condition ilarly, another aim was to determine An analysis of the different in only in the Spanish State ter- public opinion about the level of care realities, positions and requirements of the ritory, we also interviewed their received and satisfaction rates, the intersex / DSD population representatives) (1 mother, 1 main obstacles encountered, strate- in Barcelona father and 1 adult) gies implemented to overcome these limitations and potential proposals d) Activists and/or people with for change, in addition to the legal and intersex/DSD variations from social (in)visibility, stigma, discrimi- within and outside the associa- nation and harassment experienced tions and support groups in the in social and family life. The following city of Barcelona (13 interview- table details the profiles of the people ees) who were interviewed and those who participated in the group discussion, e) Parents of people with intersex/ all of whom are from Barcelona, as well DSD variations who are active as the abbreviations used to refer to in LGTBI patient associations them throughout the analysis: or support groups in the city of Barcelona (5 interviewees) Abbreviation Profile

Endocrinologist specialised End.Bog. in intersex/DSD in Latin America, residing in BCN Gynaecologist, head of Cap.Gin.Hosp3 department, expert in DSD, BCN hospital of reference Director of the Gynaecological Cap.EndGin.Hosp2 Endocrinology department, 10 Unit of Endocrine Disorders, Area of Citizen Rights, BCN hospital of reference Participation and Transparency Director of the Paediatric An analysis of the different realities, positions and Cap.EndPed.Hosp1 Endocrinology department, requirements of the BCN hospital of reference intersex / DSD population in Barcelona Specialist DSD surgeon, Cap.CirPed.Hosp4 BCN hospital of reference Biomedical professionals Sexologist, and expert in (Public healthcare Sex1 the LGTBI population in systems Catalonia and alternative Gynaecologist, and expert Gin1 systems) in DSD Gynaecologist and Gin.Sex1 sexologist, expert in intersex/DSD Psychologist, expert in Psych1 intersex and transsexual individuals Clinical psychologist, expert Psych2.Hosp1 in DSD, BCN hospital of reference Psychiatrist, expert in Psych.Hosp2 transsexuality/DSD, BCN hospital of reference Family doctor and Med.Fam1 sexologist, an expert in the LGTBI population Abbreviation Profile

Medical researcher in DSD, Cap.Hosp1 on an international scale Delegates in Catalonia from D-FEDER FEDER Spokesperson for the P-FCMPF Catalan Federation of Rare Diseases Sociologist, expert in LGTBI1 transsexuality/intersex 11 issues BCN Representatives Area of Citizen Rights, Participation and from federations Spokesperson for the Transparency P-Turner2 or collectives AFAPAC (TS) An analysis of the different realities, positions and Spokesperson for the requirements of the P-ascatsk intersex / DSD population Ascatsk (KS) association in Barcelona Spokesperson for the P-CAH Spanish CAH Association Spokesperson for the P-Turner1 Alejandra Grandes (TS) association Spokesperson for the P-Grap GrApSIA association Abbreviation Profile

Psychologist, expert on the H-inter LGTBI population Female adult female, M-Roki MRKH syndrome, a.m.a.r. association Spokesperson for the P-Roki MRKH syndrome, a.m.a.r. association

12 Adult female, CAIS, GrApSIA M-Grap1 association Area of Citizen Rights, Participation and Transparency Adult female PAIS, GrApSIA M-Grap2 An analysis of the different association realities, positions and requirements of the Adult female CAIS GrApSIA intersex / DSD population M-Grap3 in Barcelona Intersex and DSD association population (from Adult female, Nr5a1 gene within the Support M-Nr5. mutation Groups and outside) Adult female Turner, M-Turner1 Alejandra Grandes association Adult female Turner, M-Turner2 Alejandra Grandes association H-Klinefelter Adult male S. Klinefelter Adult male hypospadias, H-Hipos sexologist and psychologist, expert in intersex issues Adult female CAH, Spanish M-CAH CAH Association Adult male CAH, Spanish H-CAH CAH Association Abbreviation Profile

Father of a female child Pa-Grapsia with CAIS, GrApSIA association Mother of a female Parents/relatives Ma-Grapsia child with PAIS, GrApSIA of intersex/DSD association people (from within Mother from the Ascatsk the Support Groups Ma-ascatsk association and outside) Mother from the Alejandra 13 Ma-Turner Grandes association Area of Citizen Rights, Participation and Mother from the GrApSIA Transparency Ma-Nr5 association An analysis of the different realities, positions and requirements of the intersex / DSD population in Barcelona Due to difficulties in arranging interviews with the five social healthcare professionals due to a lack of time or other factors, they requested and/or we proposed that they answer a short online questionnaire. Four of them completed the questionnaire (see completed questionnaires in the annexes). THE OCCURRENCE OF INTERSEX AND DIFFERENT WAYS TO APPROACH IT. IMPOSED AND ENFORCED CATEGORIES

Existing definitions and classifications

Although the term "intersex" has its The consequence of various alterations origins in zoology, specifically in the in the complex physiology that usually work of Goldsmith (1917), who spoke results in the normal formation of both of a wide range of sexual ambiguity, the internal and external genitalia (Gra- Marañón explored it further in his work cia Bouthelier, 2002: 83), or even among The evolution of sex and intersex condi- the definitions of DSD: sexual differen- tions, published in 1930. Prior to that, tiation alterations (SDA). A wide range they used the terms "hermaphroditism" of pathologies exist, caused by an or male and female "pseudohermaph- anomaly in one of the stages of foetal roditism" to refer to inconsistencies development, which are essential for in sex chromosomes, gonads and gen- the normal development of genetic sex itals. Marañón recognised a stage of (karyotype, chromosomes), the gonadal undifferentiated sexuality as a starting sex (ovaries or testes) and the internal point for all human beings and intro- and/or external genital sex (male or 14 duced the idea of sex as a continuum. female) (Audi Parera et al, 2011: 1). Area of Citizen Rights, The description of gender as a more Participation and Transparency fluid concept served as a theoretical It is due to theories of the nineteen-fif-

An analysis of the different basis for the definition of the "vari- ties from the well-known researcher, realities, positions and ances", the "flaws", the "anomalies" John Money, that intersex would become requirements of the intersex / DSD population or the various "problems" from which recognised at a scientific level and in the in Barcelona sexual differentiation originates and media. Money helped to launch the first that, in short, give rise to his account of standard treatment practices for inter- "intersex states". Marañón understood sex conditions, with protocols stating that intersex states include those that anyone born with atypical genita- cases in which physical or functional lia should go through a process of "nor- traits of both sexes coexist in a single malisation" with the help of surgery and individual, whether male or female, hormones, and that this process should these traits can appear in equal or near be kept secret. This was the standard equal proportions; and, or, more fre- medical care approach until a few years quently, there is an indisputable domi- ago. However, in Spain, and specifically nance of the legitimate sex/gender over in Barcelona and Catalonia, it would be the spurious one (Marañón, 1930: 4). the surgeon, Joan Martinez-Mora, who played a decisive role in the classifica- Definitions of intersex, intersexual tion, definition and treatment of these states or DSD have been updated over situations. In his 1994 classification, we the years. Within the medical sphere, can observe how conventional nomen- intersex has been talked about as clatures were interspersed with classifi- the result of errors in foetal develop- cations that used the specific names of ment, either in terms of chromosomes, precise syndromes, such as Klinefelter embryological problems or biochem- Syndrome or Turner syndrome. ical defects (Piró Biosca, 2002: 129). Male pseudohermaphroditism True hermaphroditism Karyotype: 46 XY Karyotype: 46 XY or 46XX Gonads: testis Gonads: ovotestis Phenotype: masculine or Phenotype: variable ambiguous Ambiguous external genitalia Ambiguous external genitalia Asymmetrical gonadal Female dysgenesis pseudohermaphroditism Karyotype: commonly mosaic Karyotype: 46 XX Gonads: testis and gonadal Gonads: ovaries tissue (“streak gonads”)

Phenotype: ambiguous Phenotype: masculine or 15 feminine ambiguous Ambiguous external genitalia Ambiguous external genitalia Area of Citizen Rights, Participation and Transparency

Intersexual States. Disorders of Sex Differentiation (Martínez-Mora, 1994: 3) (own An analysis of the different translation). realities, positions and requirements of the intersex / DSD population In order to explain what intersex is from cal device that questioned the deep- in Barcelona a contemporary perspective, we did not rooted and robust social constructions, find information apart from that pro- such as the idea of "normal" based posed by the medical community up to on certain values and gender ideol- the 1990s. Until then, only medical pro- ogy, as well as the medical and scien- posals were regarded as a legitimate tific paradigm to "restore" the bodies form of discourse; common patterns of people with intersex variations, of differences in sexual development through surgery and hormones. Their could only be explained by gene muta- proposal meant, among other things, tions and "errors in the normal pro- breaking away from the dichotomy of cess of sexual differentiation". In the male-penis/female-vagina, but also nineties, definitions of intersex started challenged "scientific objectivity". As to circulate based on real life experi- a consequence, science is showcased ences. These people formed the first as a narrative which is burdened by intersex activist groups on an interna- political, religious and cultural values tional scale, notably the ISNA (Intersex and ideology. This movement pursued Society of North America). One of their the progressive depathologisation and first allegations focused on the spe- acceptance of intersex bodies as var- cific instruction given to patients that iations within the broad spectrum of they should hide their diagnosis, med- human bodies and not as unfinished, ical gender reassignment processes, impaired or wrong (Kessler, 1998; as well as surgical procedures per- Chase, 1998, Fausto-Sterling, 2000). formed. They condemned the secrecy, The definitions derived from this new, the shame and the stigma imposed on non-pathological perspective of inter- them, criticised the inherent sexism sex anatomies refer to variations within surrounding surgical decisions, and a wide range of body options: the Inter- the surgical model which completely national Gay and Lesbian Human Rights ignored sexuality and the wishes of the Commission (IGLHRC) speaks of the people receiving the treatment. This “set of variants in masculine or femi- movement built a powerful theoreti- nine body standards” (IGLHRC, 2005). In the context of the Spanish State, the since it considered the former “terms drafting of the Law on Gender Identity and labels particularly controversial. and Expression and Social Equality and These terms are perceived as poten- Non-Discrimination of the Community tially pejorative by patients, and can be of Madrid, defines it as, the variety of confusing to practitioners and parents situations in which a person is born alike” (ibid.). The new terminology par- with a reproductive or sexual anatomy ticularly pleased medical profession- that does not appear to conform with als and parents of patients, but also the typical definitions of masculine those diagnosed with an intersex con- and feminine. dition who did not identify with what was beginning to establish itself as In 2006, the Consensus Statement of "intersex identity". Nevertheless, this Intersex Disorders (Lee et al., 2006), new nomenclature would cause great or the Chicago Consensus, proposed controversy. Some people with intersex 16 a new term “Disorders of Sex Devel- variations/DSD would defend “inter- iii Area of Citizen Rights, opment”, which is well-known by the sex as their identity even though their Participation and Transparency acronym DSD, which replaced “inter- original differences had been removed

An analysis of the different sexuality/intersex”, and the more anti- through surgery” and they would reveal realities, positions and quated terms, “hermaphroditism” and “gender re-assignment errors” and requirements of the intersex / DSD population “pseudohermaphroditism”. This change errors related to “never being able to in Barcelona in nomenclature aimed to destig- identify with the gender imposed”. matise atypical sex differentiations,

TABLE 1 Proposal for revised nomenclature PREVIOUS REVISED Intersex Disorders of sex development (DSD) Male pseudohermaphroditism Undervirilisation of an XY male DSD 46, XY Undermasculinisation of an XY male Female pseudohermaphroditism Overvirilisation of an XX female DSD 46, XX Masculinisation of an XX female True hermaphroditism Ovotesticular DSD XX male or XX sex reversal 46,XX testicular DSD XY sex reversal 46,XY complete gonadal dysgenesis Consensus Statement on Management of Intersex Disorders (Lee et al., 2006) (Own translation).

Recently, the medical community compiled the criticism expressed by activist and patient movements, and is now incorporating depathologised definitions into previous works —in terms of variations and differences—, through the deployment of the acronym DSD as differences of sex development (Audi and Fernandez-Cancio, 2015).

Who does this study address?

To determine the realities, stances and requirements of the people with intersex variations/DSD and their families in the city of Barcelona, we must first recognise this population. Initially, the search for interviewees was based on existing medical classifications defining a spectrum of syndromes that fall within the DSD category in the international Consensus of Lee et al. in 2006 —the most recent classification used by the international medical community and expert professionals in the city of Barcelona—:

TABLE 2 Examples of DSD classification Sex 46, XY DSD 46, XX DSD chromosome 45,X Disorders of gonadal (testicular) Disorders of gonadal

Turner development (1) complete gonadal (ovarian) development 17 syndrome and dysgenesis (Swyer syndrome); (1) ovotesticular DSD; Area of Citizen Rights, variants (2) partial gonadal dysgenesis; (2) Testicular DSD (e.g. Participation and (3) gonadal regression; and (4) SRY+, dup SOX9); and (3) Transparency ovotesticular DSD gonadal dysgenesis An analysis of the different realities, positions and 47, XXY Disorders in androgen synthesis Androgen excess: (1) requirements of the intersex / DSD population (Klinefelter or action: (1) androgen biosynthe- foetal (e.g. 21- or 11.- in Barcelona syndrome and sis defect (e.g. 17-Hydroxysteroid hydroxylase deficiency); variants) dehydrogenase deficiency, 5α-re- (2) fetoplacental ductase-deficiency or mutation); (aromatase deficiency, (2) defect in androgen action (e.g. POR [cytochrome P450 CAIS, PAIS); (3) LH receptor defects oxidoreductase]); and (e.g. Leydig cell hypoplasia); and (4) (3) maternal (luteoma, disorders of AMH and AMH receptor exogenous, etc.) (persistent müllerian duct syndrome) 45,X/46,XY Other (e.g. (mixed Cloacalextrophy, gonadal vaginal atresia, MURCS dysgenesis, [müllerian duct aplasia; ovotesticular renal aplasia, and DSD) cervicothoracic somite dysplasia], other syndromes) 46,XX/46,XY (chimeric, ovotesticular DSD)

While consideration of karyotype is useful for classification, unnecessary reference to karyotype should be avoided; ideally, a system based on descriptive terms (for example, androgen insensitivity syndrome) should be used wherever possible. StAR refers to the steroidogenic acute regulatory protein. Consensus Statement on Management of Intersex Disorders (Lee et al., 2006) (Own translation). However, after contacting people with hypospadias are very similar to those these variations, both within and out- of many other men. Socially, we’ve side of the associations, it was found had the same fears, the same feeling that these people were rarely recog- of being different, the same secret nised under the intersex/DSD umbrella that we’ve had to keep for our entire in any of its forms (such as anoma- lives and which some are still holding lies, disorders or differences). Rather, on to. So, that is how it is, it is impor- these people more frequently identify tant to raise awareness about ways themselves with characteristics of to not pathologise our condition. And their own syndrome and make spe- to give people the option of having re- cific demands for their own conditions, sources like this. without establishing connections with other intersex variations/DSD. A key As for Cap.EndPed.Hosp1, bringing point during the research interviews together all of these conditions under 18 was when respondents were asked if the same umbrella only makes sense Area of Citizen Rights, they considered it appropriate or help- in the scope of medicine or treatment. Participation and Transparency ful during the planning of procedures For example, when specifying diagnos-

An analysis of the different or public policies, to use this umbrella tics, protocols, medical initiatives or realities, positions and term, whether it be intersex, DSD or multidisciplinary care requests with requirements of the intersex / DSD population another. The responses varied widely psychologists, etc. As for profession- in Barcelona among interviewees. H-Hipos noted: als, it does not make sense to do it from an associative or social perspective, Depending on who I talked to during because each group has very specific my life, many people within the group problems and many of them are not of people with hypospadias, told me: interrelated. Cap.EndPed.Hosp1 gave “Yes, I am” intersex, and others said the example of Turner or Klinefelter to me: “No, not at all”. So, clearly... syndrome, which require solutions to What they have in common is differ- problems that differ greatly from other ence, there is variation, whether you types of DSD, ranging from fertility, to like it or not: physiological, biological, specific issues related to learning and chromosomal or hormonal. There is cognitive, intellectual and neuropsy- variation with regards to what is nor- chological profiles. mal, what is most common, what is normal in quote marks, and we always As for Cap.EndGin.Hosp2, it is impor- talk about what we have in common. tant that appropriate distinctions are Always. Bodies are always defined made in the search for an umbrella by “it’s like this or like that”, “a boy classification. For professionals, it is is like this, a girl is like that”. There is necessary to distinguish between dif- so much diversity between the binary ferences of sex development, which notions of female and male. But, it is include MRKH syndrome and different important to find common ground to intersex conditions, where there is a talk about the same experiences; it is “discordance” between the chromo- a way of depathologising too, because somal gender and the genital and/or you get to know people’s life experi- phenotypic sex. Under this definition, ences —it’s important—,to know a MRKH syndrome would not be con- little bit about how we have lived, be- sidered as a form of intersex, because cause, from what I have experienced, the chromosomal gender is XX and the there must be thousands of us. At the normal female phenotype is present beginning, I thought I was alone. But (however, menstruation is absent due in the end, my needs as a man with to the underdevelopment or absence of Despite the lack of knowledge or disi- a uterus and vagina). dentification from the start, we were able to identify common causes of Although MRKH is a congenital vagi- problems expressed by the interview- nal agenesis anomaly, it does present ees with different intersex variations/ a normal karyotype. / /iv It is there- DSD (in essence, these were about the fore considered as a developmental care model and the models related to anomaly, but not as an intersex state, the devaluation of masculinity and which is something different. Many femininity). In this way, by always keep- intersex states present congenital ing the creation of health and social vaginal agenesis, yet not all types of policies in sight, we agree to overcome congenital vaginal agenesis give rise the act of classification itself, as well to an intersex state. Intersex states as the limitations that their definitions include hermaphrodites and pseu- entail, and to include people in the 19 do-hermaphrodites: hermaphrodites sample whose problems and needs are have a mix of ovarian and testicular connected to the sexual/reproductive Area of Citizen Rights, Participation and gonadal tissue (this could mean one anatomy of a community that does not Transparency

ovotestis, or one testis and one ova- fall within the socially expected mar- An analysis of the different ry...: they have two gonads), and pseu- gins. Thus, for example, regardless of realities, positions and requirements of the do-hermaphrodites have only one whether MRKH syndrome falls within intersex / DSD population type of gonadal tissue, but their sexu- the DSD classification of 2006, many in Barcelona al characteristics conform to those of women with MRKH syndrome and AIS the other sex; a karyotype 44, XY male, found help and meaning when they with or without testes, develops in shared and connected their experi- the way a female would, whilst a kar- ences. In the same way, some women yotype 46,XX, with ovaries, would de- from the GrApSIA association said that, velop like a male. These are intersex in the past, connections between inter- states. The MRKH karyotype is always sex and transsexuality were rejected, 46XX and patients develop as women and since they overcame the prej- and have a congenital agenesis of the udices facing this group, they have vagina. Therefore, it is not considered found significant similarities in their as an intersex state, but as a develop- experiences, which has helped them mental anomaly (Cap.EndGin.Hosp2). to understand themselves better and accept who they are. The truth is that People consulted outside of the sup- this lack of knowledge on the part of port groups were rarely aware of the our interviewees about other intersex connections between the different variations, aside from their own, has syndromes, or understood the com- made it much more difficult to explore mon struggles shared between them. synergies. The people who have got- Of the groups consulted, only GrApSIA ten to know and have connected their could name other syndromes and some experiences with other groups argue of the connections between them. that it makes sense to find common This is not only the result of chance. struggles and needs, and to join forces This group of people with intersex var- when proposing initiatives or policies, iations/DSD receive the most media without forgetting or forsaking the exposure and garner more health and needs or specific demands of each social involvement, due to the fact that condition. it participates in research, publications and medical meetings regarding DSD throughout Europe.v

THE INTERSEX/DSD COMMUNITY AND THEIR INCLUSION IN LGTB POLICIES: WHETHER OR NOT IT BELONGS IN THE LGTB(I) GROUP

A report published in 2009 by Barce- Many people from the LGTB community, lona City Council assessing the real- including some medical professionals, ity of the LGBT community within the consider intersex as something which city of Barcelona, speaks of a highly is always related to unusual genitalia. divided group with unclear perime- However, as we have seen in the com- ters; how the letters that make up the prehensive list of conditions set forth acronym are inclusive or exclusive: the under the DSD heading, many bear no “B” for “bisexual” disappears, the “T” relation to atypical genitalia, and the for “trans” is forgotten, add the “Q” for majority of these people do not identify “queer”, include the “I” for “intersex”, themselves as “intersex” either. It is or the “G” for “gay” takes centre stage difficult to speak of the existence of an and even covers up the “L” for “les- "intersex” community, not only because bian”. The contributors spoke of inter- of the divergent and contradictory defi- nal conflict related to being part of the nitions of intersex and the disidentifi- 20 group, and their sense of belonging or cation with the term, but also because Area of Citizen Rights, rejection in relation to the categories. of the fact that we are not speaking of Participation and Transparency They also explained the inability to talk identities themselves, but a physiolog-

An analysis of the different about a cohesive group, “because gays ical state linked to hormones, chromo- realities, positions and and lesbians have no relation to each somes, genes, gonads, genitals, etc. requirements of the intersex / DSD population other, and the vast majority of lesbi- in Barcelona ans and gays have no contact with any- The issue is that, within the commu- one who is trans» (Coll-Planas i Missé, nity of intersex people, there is a great 2009). The contributors concluded that deal of diversity. There are many peo- the labels are not readily accepted by ple who only perceive their situation the people that they intend to group in terms of their anatomy, the function together. Nowadays, the inclusion of of their sexual organs, the possibility intersex in the acronym is the most of having normal sexual relations or poorly received by the people it is if they need a procedure in order to intended to represent. have intercourse, etc. Then, you come across another group that views intersex more from the perspective of gender identity. These groups are much closer to LGTB groups than the rest. In addition, the rest, the majority, are heterosexual, cissexual, regardless of how their genitals are. Therefore, talking to them about gen- anyone asks me: “How do you view der identity or sexual orientation, is yourself, what was your child- like another world for them, a world hood like, how was it?”. Everything. that they do not feel connected to. Everything, right? The excitement of They don’t believe that it has any- seeing the first hair. Of course, I, as thing to do with their own story. And a homosexual, and for having expe- of course, you say: “I don't know, rienced gender transition, have a lot somehow they want to insert me into in common with the LGTB communi- something that is not part of my sto- ty. But I am an exception. The freak ry”. // Of course, there is a relation- among the freaks. [Laughs] / The ma- ship between the two. Butler made a jority of intersex people have nothing very interesting observation when he to do with all of that (H-inter). proposed queer theory and starts by saying that the sex-gender dichotomy In the same way that Coll-Planas and 21 really is just an invented dichotomy, Missé (2009) diagnosed the LGTB pop- and considers intersex as an example ulation, we have repeated the same Area of Citizen Rights, Participation and of the fact that this dichotomy exists process for people with intersex varia- Transparency even in nature. But, after a series of tions or DSD. Not only does the use of An analysis of the different practical diversions, you are lead to categories create conflict, with respect realities, positions and requirements of the the fact that there are people who to the definition of the intersex state intersex / DSD population in Barcelona feel that they have been included in itself, but also with regard to the inclu- certain discourses with which they sion of the “I” within the LGTB acronym. do not identify at all. Of course, if you First of all, it gives the impression that cannot identify with a group, you will they have been made to fit in with a not participate in it. For example, I shoehorn. M-Grap3 expressed that: participate in the LGTBI organisation because I am gay. If I were heterosex- I’m still unable to see the “I” in here, ual, I wouldn’t participate. I have my just because these are people that connection. And when I’m in the LGTB have problems associated with a re- world, as a gay man, as a homosexu- lated issue. When he explained it [a al... The “I” is not a part of that for me. trans man at a conference], it seemed But of course, what happens? In ad- to me that the same thing happened dition to that, I had a natural gender with trans people; that they were in- transition when I reached puberty. cluded without them asking [for it]. Likewise, my experience was almost In many places, they included the the same, in the sense of realising that “T” without them asking [for it]. It’s your sexual identity does not match almost the same situation today. We the gender that was assigned to you, are [emphasis] the “I” and nobody has it’s very much like that of a transsex- asked us anything, and people put ual person. And in fact, I speak with the “I” on the end of the word, but: “do trans guys and we share a lot of the you know what you’re talking about, same experiences. Even about how to “simpleton”? What is this here? Tell get changed at the gym without any- me, why have you put me here? They one noticing. It’s the first thing that don’t know why either (Discussion group ). With any mention of the LGTBI organ- pass them. On the other hand, there is isation, the response is to request a no particular social group, association clarification about the gap and differ- or political organisation like LGTBI that ences between LGTB and what the "I” people with intersex variations or their actually means. In a rather indignant parents can participate in, except in manner, H-Klinefelter recalled a film isolated cases such as, in the Lambda that premiered recently, The Danish Girl de Valencia organisation or AMPGIL (2015) and which, in his opinion, clearly (Association of Parents of Gays, Lesbi- showed in some scenes that she was ans, Bisexuals and Transsexuals). With intersex because she was infertile regard to the LGTB collective, Coll-Pla- and had phenotypic traits. However, nas i Missé (2009) took the view that, not only did they not pay attention despite recognising that the collec- to this, but all of the film critics and tive is very divided and that grouping viewers mistakenly labelled her as a them all together under a single term 22 transsexual. “She’s not transsexual, is a falsehood, a social construct which Area of Citizen Rights, she’s intersex”. It draws our attention does not fully address their daily real- Participation and Transparency to how these categories are seen as ity, it is useful in strategic terms. Per-

An analysis of the different being mutually exclusive, when we are haps we should think about intersex as realities, positions and talking about different issues, about part of the LGTBI acronym in the fol- requirements of the intersex / DSD population anatomies —intersex—; about identity lowing way: in Barcelona —transsexuals—; about sexual orien- tations —gay, lesbian, bisexual—, or This is about a falsehood which has about gender expression. Therefore, a turned out to be advantageous in person with an intersex variation just unifying people and combating the like anyone else, could be cissexual, or oppression experienced by people also transsexual, in the same way that whose gender identity does not corre- they could be heterosexual or lesbian/ spond to their bodies, by people who gay/bisexual. do not feel attracted to the opposite sex or whose bodies cannot simply We’ve said that, among the DSD popu- be labelled as either male or female. lation and their relatives, there’s a lack However, we believe that the use of of knowledge about other intersex var- this construction must respect the iations/DSD, and about other groups. diversity that exists within the group They don’t envisage sharing problems, and that, following the approach of needs and complaints, and there is strategic essentialism (Fuss, 1999) ignorance and/or rejection in response on employing identity labels to fight to these all-encompassing terms. For oppression, we must not forget that this reason, it would be very difficult this is about constructions and they to compile all of the needs of such a do not respond to the essential or diverse community that can barely rec- unchangeable characteristics of ognise themselves using the categories the people that they group together that supposedly,—in theory— encom- (Coll-Planas and Missé, 2009). The logic behind including the “I” in LGTB is not so absurd if we focus on social change. Modern feminists, organisations, queer and LGBT groups and activists em- braced the “intersex cause” as a source of inspiration and liberation in response to the “heterosexual matrix” which Butler made reference to, in other words, elements which presuppose the need/obligation to assume only one biological sex which is consistent with gender identity and roles, and which in turn, generates heterosexual desire. Let’s say that the same cultural devices and the same historical matrix that stigmatise, discriminate against and violate lesbian, gay and bisexual people, are also those that have the same impact on intersex people. Society only accepts binary complementary genders —male-female—, which have a life-long unique and stable identity, and are heterosexual and able to reproduce. To all of this we have to add the assumption that leads people to think thatpeople with mixed-sex biologies will also have unstable gender identities, and a high rate of homosexuality and transsexualism due to the hormones that their brains have been exposed to. On this as- 23 sumption, Cap.Hosp1 stated that in order to provide adequate psycho-social care to people with DSD, it’s important “in principle, not to place everyone under the LGTBI Area of Citizen Rights, Participation and label. Parents, in particular, may see this negatively, in the sense that it conveys that Transparency there may be doubts about gender identity. / / Even though later on it may be linked An analysis of the different to LGTB”. With regard to the connections between transsexualism and intersex con- realities, positions and requirements of the ditions, it is common for people with intersex variations/DSD to go from rejecting or intersex / DSD population being indifferent about transsexualism, to finding connections with it that even offer in Barcelona meaning and support:

I didn’t understand it before, but you were in the box and suddenly when I got the opportunity to speak you’ve been removed from it. They tell with trans people, I began to under- you: “The thing is, you shouldn’t real- stand it. Because it’s not the same ly be in that box, you have something and yet, it is the same. Of course, different”. when you go to the doctor and he tells you: “You should have been a guy”, M-Grap3: Or, it’s worse than that. In he’s questioning your identity. And other words, in our case it is: “You this is where everything connects, in don’t fit into any box, but we can fool other words, with everything that is everyone”. Or, in other cases it is: “I related to the pressures of masculini- will let you change boxes, but you ty, femininity, of what it means to be a have to change box” "I will let you man... (M-Grap2). change boxes, but you have to do as I tell you so you won’t be like..." Of M-Grap1: It took me a while to realize course, many times, there are peo- that, for a person who changes gen- ple who want it to be like that. But, der, ultimately what he feels is a dis- clearly, they want to do it like that cordance between the inside and out. because they don’t know any other You do not know to what extent he way. Because the system forces you has learned how he should be. Per- to change boxes in a specific way haps you don’t need to. This should and many people don’t understand be what is deemed normal, to be able or know that there are other options. to have a woman with a penis or not. If people took another look around, And it’s here that I see the connec- many would not have undergone sur- tion. They force you to choose one box gery. What’s the need for it? (Discus- or the other. And what happens to us sion group). is the same, but the other way around: As for Psych-Hosp2, it only makes sense to apply LGTB social policies or gender policies to intersex in cases that exhibit comorbidity, in other words, when differences of sex development are intertwined with an LGTB experience. "Only this community would have received the LGTBI label". When people were informed about this study and heard the acronym LGTBI, many people claimed they "have nothing to do with it". The truth is that very few intersex people have explored LGTB organisations to legit- imise their lives and address their own needs. The majority feel represented by the discourse around genetic anomalies or variations and gender theories are foreign to their lives. While LGTB organisations call for human and sexual rights, those in the associations and support groups demand medical and healthcare rights (health activism). In short, with regard to the legislation and intersex policies generated through LGTBI activism, there is a perceived need for training/information on the different intersex variations/DSD, in order to tackle the specific needs of each community in suitable ways. 24

Area of Citizen Rights, The resistance I encounter in the "I” diagnosed, then they already have a Participation and Transparency group is that there are those who reference, and they know that there's

An analysis of the different think that having intersex genitalia a law or something, and that explains realities, positions and or intersex morphology implies an to them what is happening, and what requirements of the intersex / DSD population intermediate gender, you do not feel they can expect. // But, it’s also very in Barcelona like a man nor woman and things necessary that medical profession- like that. It’s not a rejection, it’s not als, psychologists and others know “I don’t want to identify myself that about this reality and have a refer- way”, rather “I don’t want anyone to ence framework. With the Consen- be confused by me, I prefer for them sus I thought, “good, it’s being talked to know me as I am” and “I don’t de- about, everyone has been involved”, fine myself like that, but in another but that wasn’t the case, there is ab- way”. It’s a more relaxed type of dis- solute ignorance there. And look, it’s course, isn’t it? / In addition to this, all pretty clear: “Unnecessary proce- each time a law is passed, if the leg- dures, what a joke”. “We must main- islation is relevant and meets a real tain sensitivity.” "The functionality of pre-existing need, and not an invent- the baby when it’s an adult as well as ed one, this is very good. Because it its future health and quality of life are brings a new reality to the table, a re- very important.” “There is no evidence ality that we need to be talking about. that parents love their children more Then, when a baby is born, or a per- if they have normal genitals or not”. son goes to the doctor because they This kind of thing. But no, they have haven’t started their periods and they no idea (H-inter). discover that they have AIS, and it’s THE MAIN PROBLEMS AND NEEDS OF THE PARTIES INVOLVED

From people with intersex variations or DSD:

For many people diagnosed with intersex/DSD, the experience is entwined with health issues, stigma and secrecy, silence and/or solitude, with secrets that have been imposed or agreed to, and lies. The secrecy, rejection and social invisibility with regard to their intersex/DSD is one of the most widespread problems among the people interviewed. This translates into difficulties in social interaction, or even into situations of abuse, which can have serious consequences on self-esteem and self-image. Add to that poor medical experiences, uncertainty in response to diagnoses and treatments, and the iatrogenic effects of treatments and surgery, and not forgetting the health problems associated with certain conditions. While we are unable to go into detail about each one of these problems, here are some key notes.

What are the main problems reported 25 by people with intersex variations/DSD and their families? Area of Citizen Rights, Participation and Transparency

An analysis of the different realities, positions and requirements of the Negative intersex / DSD population in Barcelona MEDICAL SOCIAL INTERATION EXPERIENCES (rejection, harassment, Uncertainty bullying, etc.)

Medical pilgrimage SECRETS, SELF-ESTEEM LIES AND SELF-IMAGE Loving SILENCE relationships

HEALTH Sexuality PROBLEMS Devaluation of femininity/masculinity ı STIGMA ı

Something that both professionals and stances should I change pills”. Since patients with intersex variations/DSD she was prescribed dexamethasone insist on is the need to educate the she has been experiencing dizziness, population about the diversity of con- fatigue, malaise, tachycardia, insom- ditions under this umbrella. The ste- nia, mood swings and even "an epilep- reotypical views that circulate about tic seizure". She has lost her job and intersex people are about ambiguous suffers with anxiety. When she told the genitalia and issues that affect the doctors about these symptoms, they sexual and reproductive anatomy, fail- changed the medication again or pre- ing to recognise the health problems scribed her with anti-anxiety medica- faced by these people. This is particu- tions. Her desperation drove her to see larly true for those with TS, CAH or private endocrinologists that she found 26 KS, which require almost immediate over the Internet, private centres where Area of Citizen Rights, healthcare. They also insist on the need they would perform an MRI to see Participation and Transparency to avoid lumping together everyone how her adrenal glands were working.

An analysis of the different who suffers from the same condition, Someone said that they were ageing realities, positions and “as there are varying degrees”: “I have and that she should have an opera- requirements of the intersex / DSD population been very lucky, because the degree to tion. The reality is that the testimonies in Barcelona which I’m affected is low. It only affects swing between this despair, permanent my height and I’m a little underdevel- uncertainty and the overwhelming urge oped, but there are others who have to be accepted into a specialist centre, problems with their hearts, thyroid, such as the Metabolic Disorders Unit at vision...” (M-Turner1). In this case, the the Hospital Clínic, a centre that does types of problems that are present and not fall within her catchment area for the requirements are similar to other medical care. illnesses covered under the FEDER umbrella. Another complaint highlights the chronic prescription of medication, ongoing There are limitations when it comes changes to active pharmaceutical ingre- to receiving adequate, comprehen- dients, brand names (some medications sive, and free healthcare which makes are no longer manufactured) and dosage patients into medical pilgrims. On many adjustments. They talk of the need to find occasions, accessing adequate biopsy- specific pharmacies that can prepare the chosocial care is linked to the patients’ exact composition of some medications; buying power, and economic status. of having to collect the medication in the There are many reports of dissatisfac- pharmacy of the hospital of reference, tion and a lot of money spent on private being unable to take the prescription to medical insurance and second opin- any pharmacy, then having the additional ions from other specialists. H-CAH is obstacles associated with living outside unable to hide her desperation: They the city or in rural areas; and, above all, talk about changing the treatment plan of the high cost of medications that are each time you visit a new specialist, either not covered by social security or “although I carried a medical report are waiting for the medical boards to which said that under no circum- approve their coverage. For example, when interviewees with TS In the social sphere report health problems, the first things they mention are short stature and When the appearance of the external delayed sexual development, their own body is non-normative in terms of gen- specific physical features, the absence der —body forms, fat deposits, facial of menstruation, incurable sterility, or body hair in women, breasts in men, heart or kidney problems (horseshoe etc.— patients report various forms kidney), high blood pressure, obesity, of harassment, discrimination or even diabetes mellitus, cataracts, thyroid abuse in social interaction, especially problems, arthritis, hearing problems at school: and learning difficulties , especially in mathematics, or other tasks, such as I always received some incredible reading maps or visual organization. As beatings. Not physically, of course; for KS, the same attention deficit prob- psychologically. And to top it off, 27 lems are reiterated, alongside difficul- they bullied me at school because ties in language development, learning of the moustache, hyperplasia, etc., Area of Citizen Rights, Participation and words, reading, writing and spelling. and from then on, just because they Transparency

With regard to CAH, the main and most wanted to. The labelled me a he-she. An analysis of the different serious issue that came up during the But hey. Then, they wanted me to play realities, positions and requirements of the interviews was salt-wasting syndrome, basketball and football with them. intersex / DSD population which occurs in newborns. it is a com- They can go screw themselves. Yes, I in Barcelona plication that, if left undetected, can was good at basketball. And it inter- quickly result in death. It also requires ested me, I like to be with the guys life-long monitoring to adjust the dos- because I didn’t want to be with the age of glucocorticoids in response to popular girls screaming like a pop sickness, injury or stressful situations fan. I enjoyed playing basketball. Not —“stress dosages”—. Women with because I was a lesbian. There are CAH also have problems with atypical thousands of straight girls that play genitals such as the vagina, clitoris or basketball. I don't have any other labium. Women with AIS or Swyer syn- explanation: it's just that people are drome only mentioned physical health assholes from a young age. There's complications arising from medi- no other way to describe them. When cal-technological procedures —iatro- I left school, I didn’t want to go back genics, cause by HRT or surgery—, there ever again. // So, when someone oesteoporosis, the absence of a vagina, tells me that they have been bullied, I as well as atypical genitals inherent can't handle it (M-CAH). in PAIS. And, women with MRKH only pointed out the absence of a vagina. On the other hand, the lack of information about different intersex variations from the institutions places people in helpless situations, at a disadvantage and completely vulnerable before the Administration:

The other day, I was left astounded when [the president of the CAH association] told me that there had been cases of people with the same condition as mine that had gone to get their driving license and had been told that they wouldn’t be able to At the same time, the need to be able to drive the car. They put obstacles in accept one's own body or differences is the way to stop you getting your driv- recognised: ing license. I said: But what does it have to do with that? (H-CAH). To accept oneself even more. To feel like a woman. It is what you need. It’s the fact of knowing what it feels like in normal circumstances to have in- In the intimate and personal tercourse. There are many ways of sphere acting like a woman, and I’m capable of very few of them. And the lack of The experience of being ashamed of confidence that builds up inside you oneself is created and recreated in the really knocks you back. I have hardly recounting of personal stories, in every any confidence in myself (M-CAH). 28 little secret kept within the family, or Area of Citizen Rights, in every social scenario in which they In this sense, sexuality and relation- Participation and Transparency feel the need to hide. A cycle of inter- ships with a partner are one of the

An analysis of the different rogation emerges, the fact of “being most widespread fears: realities, positions and questioned” and "questioning oneself” requirements of the intersex / DSD population regarding the body, gender identity or The first time, you know, when you’re in Barcelona desire. Being biologically different in with your partner, it’s very scary. Af- terms of anatomical and/or reproduc- terwards you're fine, but you're fine tive sex —both visibly (the appearance because you accept it, because you of the external genitalia and phenotype, know that there are girls with hyper- fat deposits and hair distribution, mus- plasia, and even normal girls whose cle development and general external flow is not thick, it's more like water. appearance), and invisibly (chromo- So, you have to keep dilating it over somes, gonads, internal structures)— and over again. It makes me mad, I get leads us to think that this biological mad. I mean, I'm upset because the divergence will influence their identi- other person has to be doing this all ties and life expectations and desires: the time. In the end it’s all unnatural. It really bothers me that I have to use I...even when I was little, you are external objects. They’re not a part aware of what you are thinking... Well, of me. They do something unnatural I don’t think this is something that to me. And, why, if I am a woman? A happens to everyone. But I thought lot of people have said to me: “You’re that maybe I should say that I’m a les- making yourself the victim”. Well, no, bian because I couldn’t imagine being I’m not making myself the victim. It’s with a man, not even now. I just can’t. how I feel. It’s as if we were told: “You Not me. Then, later, as you grow up, are a woman, but you’re not”, when you realise that it is not for this rea- it comes to sex, because of the way son, but you have come to think of it your vagina and clitoris are... On the like that. Because of course, that is inside you’re freaking great, but on why you have to get to know yourself. the outside you’re not (M-CAH). I think that I could fall in love with a woman, but not with her body. It’s al- Perhaps you want to meet someone, ways like that, about sex (M-Nr5). or maybe not: to go to a bar, meet a girl, have sex with her and then go home, I can’t do this kind of thing because of the way I am. Because of the way I feel and my body. I know that I different types of intersex/DSD. In all shouldn’t be so fearful, but I don’t of these cases, menstruation can not want to shout it from the rooftops. occur naturally, nor fertility without Why not, right? It’s very messed up. medical intervention (see annexes). It’s not like saying “I was a drug ad- Similarly, it is possible for women with dict” o “I had anorexia”, which is al- CAH to have regular menstrual cycles ready messed up on its own. In ad- and even come to experience preg- dition to the beating you get from nancy, through HRT, as well as in cases society, they put a lot of crap in your of Swyer syndrome (via embryo dona- head. // It’s the crap from society tion to their own uterus), and in TS. We that’s in here, especially from Telecin- observe how each one of these condi- co. I say, OK, I'm going to my room to tions is related in diverse ways to the watch some TV shows and films. Af- traits that give rise to female identity: terwards, I've always been, if I have a chromosomes, gonads, genitals, exter- 29 partner, been with my partner and I nal appearance, menstruation, fer- almost forget my friends. Perhaps it’s tility, pregnancy. With respect to the Area of Citizen Rights, Participation and for the fear of losing that person and differences between the expectations Transparency

having to go back to the start of the of womanhood for women with TS and An analysis of the different cycle (M-CAH). others, M-Turner1 said: realities, positions and requirements of the intersex / DSD population in Barcelona The concept of "fear of devaluation" is Perhaps physically, you notice that especially useful in analysing the expe- you are different from other wom- rience of women with intersex varia- en. You consider yourself strange. tions/DSD, because it is connected to Later on..., in my case, I would like, their level of adaptation and perception perhaps, to have surgery. // Aesthet- of having a compromised womanhood. ically, whether you want to or not, Depending on one's own subjectivity, of obviously, you look at your physical the context, but especially on one's own body and you’re not happy with what gender expectations, these women feel you see. // The chest. I’m lucky in that, more fear of rejection and of not being at least I am well developed in com- valued and cherished by family, friends parison to other girls I’ve seen with and, especially, by their partners. This this syndrome. Then again, not that fear is related to a kind of "functional much. But, I don't know. It’s a person- inability"; in other words, not being able al thing... In reality, when I have spo- engage in heterosexual intercourse — ken to other girls, it’s only really been with a vagina that is adequate for penile me that would like to take this step. It intercourse— or not being able to get seems like it doesn’t appeal to others, pregnant. These limitations are particu- they are fine the way they are... larly challenging for those who want to get married and have a traditional fam- Within the complexity of this, we have ily —to experience the joy of pregnancy, to understand that each new obsta- the sense of belonging and recognition cle, whether biological or functional, bestowed by blood ties, etc. In many adds to the effect of the devaluation women with CAH, TS, MRKH syndrome, of femininity. If a women presents AIS or Swyer syndrome, this fear of XY chromosomes, and male gonads, devaluation is apparent. she will never have a period, she will undergo clitoral reduction because But in truth, we discover important it was considered too large, her body nuances when we analyse the "deval- will have male features (the presence uation of femininity" in women with of body hair, a beard, body form, etc.) or may be infertile and not be able to achieve pregnancy, even with the help of technology: She will be much more vulnerable and the "sexual norms" will apprehend her with more virulence than those that, for example, have ovaries instead of testes, or present XX chromosomes instead of XY or, with the help of technology, will be able to start their periods and become mothers. The comparison chart below allows us to evaluate the level of vulnerability and abuse to which these women could potentially be exposed according to their condition:

CAIS PAIS CAH MRKH SWYER TURNER

Menstruation No No Yes A No Yes A Yes A (Androgen excess (oestrogen + progest. (spontaneous in few cases treatment) combination) oestrogen + progest.) 30 Fertility No No Yes A Yes A Yes A Yes A Area of Citizen Rights, Participation and (glucocorticoids) (egg donation. surrogacy) (embryo transfer) (embryo transfer) Transparency

An analysis of the different Pregnancy No No Yes A No Yes A Yes A realities, positions and requirements of the (caesarean) (hormone therapy, IVF) intersex / DSD population in Barcelona Atypical genitals No Yes Yes/No No No/occasional clitoral No (different degrees) hypertrophy

Abnormal pubertal No Yes Yes/no (with No No/Yes (with oestrogen Yes development treatment) treatment)

Vagina Complete/partial Complete/partial Yes/No Complete or partial Yes Yes absence of a absence of a absence normal vagina normal vagina

Uterus and No No Yes Complete or partial Yes (rudimentary uterus. Yes reproductive absence Oestrogen) structures

Karyotype/Gonads XY/Testes XY/Testes XX/Ovaries XX/Ovaries XY/Gonadal Dysgenesis XO/Gonadal Dysgenesis (Hypogonadism) (Hypogonadism)

Related health Iatrogenic effects Gonadal Dehydration Iatrogenesis (surgery) Gonadoblastoma. Kidney and heart problems (osteoporosis, malignancy Cardiac Iatrogenesis (surgery and problems, high blood surgery) Iatrogenesis arrhythmias, hormones) pressure, diabetes Low risk of gonadal (osteoporosis, etc. (during salt mellitus, cataracts, malignancy surgery) loss episodes). thyroid problems and Adrenal crisis arthritis. Iatrogenic effects (hyponatremia, shock). Steroid induced iatrogenic effects (bones)

Proposed Gonadectomy. Gonadectomy. Vulvovaginoplasty. Vaginoplasty Gonadectomies Plastic surgery (protruding procedures Vaginoplasty. Vulvovaginoplasty. Clitorectomy. Gen- ears, limb lengthening, Clitorectomy. Gen- der policing breast implants, etc.) der policing Gender policing of body hair, a beard, body form, etc.) or may be infertile and not be able to achieve pregnancy, even with the help of technology: She will be much more vulnerable and the "sexual norms" will apprehend her with more virulence than those that, for example, have ovaries instead of testes, or present XX chromosomes instead of XY or, with the help of technology, will be able to start their periods and become mothers. The comparison chart below allows us to evaluate the level of vulnerability and abuse to which these women could potentially be exposed according to their condition:

CAIS PAIS CAH MRKH SWYER TURNER

Menstruation No No Yes A No Yes A Yes A (Androgen excess (oestrogen + progest. (spontaneous in few cases treatment) combination) oestrogen + progest.) 31 Fertility No No Yes A Yes A Yes A Yes A Area of Citizen Rights, (glucocorticoids) (egg donation. surrogacy) (embryo transfer) (embryo transfer) Participation and Transparency

Pregnancy No No Yes A No Yes A Yes A An analysis of the different realities, positions and (caesarean) (hormone therapy, IVF) requirements of the intersex / DSD population Atypical genitals No Yes Yes/No No No/occasional clitoral No in Barcelona (different degrees) hypertrophy

Abnormal pubertal No Yes Yes/no (with No No/Yes (with oestrogen Yes development treatment) treatment)

Vagina Complete/partial Complete/partial Yes/No Complete or partial Yes Yes absence of a absence of a absence normal vagina normal vagina

Uterus and No No Yes Complete or partial Yes (rudimentary uterus. Yes reproductive absence Oestrogen) structures

Karyotype/Gonads XY/Testes XY/Testes XX/Ovaries XX/Ovaries XY/Gonadal Dysgenesis XO/Gonadal Dysgenesis (Hypogonadism) (Hypogonadism)

In terms of negative experiences, they describe the lack of knowledge and insensitivity of medical professionals that attend to these conditions, the trauma of medical check-ups and physical exhibitions in front of doctors and medical students, the lack of interest and respect for individual experiences of sexual identity, sexuality, or desire, or recalling the pain caused during procedures or operations. In women with CAH, AIS or MRKH, we repeatedly 32 hear complaints about the "shocking Area of Citizen Rights, terminology" used by medical profes- Participation and Transparency sionals —"categories are necessary,

An analysis of the different but doctors should be aware of the realities, positions and effect they have because language is requirements of the intersex / DSD population not sterile and it should not recrimi- in Barcelona nate" (P-Grap)—, about repetitive and unnecessary genital exposure in front of large groups and unknown doctors and students —"You see the student there taking notes... Well, remove him from here or ask me if I consent to this"(M-Grap2)—, or negative experiences related to vaginoplasty recommendations and procedures and the process to create a vagina through dilation:

I went in and it did me a hell of a lot of damage. I requested an appointment with the gynaecologist. He asked me who the hell had told me to put that there. And I said, "Dr. [name of the surgeon]. And he said: “Well, I wouldn’t have advised it. You know what your vagina is like, to be putting things like that there. You’re ru- ining yourself”. And he was the one that advised me to buy the dilators. I had to do that. So, why didn’t he tell me to use dilators instead of telling me about tampons? Even the dilators didn’t solve anything (M-Grap2).

For specific syndromes:

Below, we give information about some of the problems or specific needs, divided into stages, and for some of the individual types of DSD, using the notes provided by Psych2.Hosp1 about the KS case as a basis and merely as a tentative way of drafting a future guide. Certainly, these needs may persist through different stages in life or may appear at different stages depending on each individual person, in addition to taking into account the diversity of each DSD— and the “degree of severity”. We will see that some of these are reiterated by patients with different DSD and at different stages. This information should only be used as a guideline, or can simply be taken into account during the development of future projects.

Turner syndrome • Accept your own sexual development as a woman (without the need to Infancy/adolescence repeat the expectations of femininity, for example, the development of 33 • Learn about your own biological breasts). condition (the development of organs Area of Citizen Rights, Participation and and what consequences it can have • Isolation. The need to feel supported Transparency

on your health). (by a peer group or reference group An analysis of the different of women with Turner Syndrome). realities, positions and requirements of the • Understand the need to take intersex / DSD population in Barcelona medication on a long-term basis • Receive dignified treatment from and acquire the skills to administer professionals, who cater to diversity them (growth hormones are injected and offer resources, facilities, every day during growth and later, and alternatives to treatment or oestrogen, etc.). treatment options.

• Living with differences. The "dualism • Accept the identity / the role of of normality" and accepting the patient (ongoing check-ups, difference itself (body form, height, procedures, medication, etc.). development of secondary female characteristics). Adulthood

Adolescence/Early adulthood • Overcome the fear of rejection, in addition to accepting and loving • Accept the absence of menstruation your differences. Self-esteem and (a woman’s rite of passage). empowerment.

• Assume infertility without treatment, • Assume infertility without treatment the need for HRT to become a mother (“you are a whole woman even if (with egg donation) and/or consider you are not a mother”) and the need other alternatives to standard for HRT to become a mother (with motherhood (“you are a whole egg donation), as well as long-term woman even if you are not a mother”, fertility treatment. or adoption). • Overcome potential sexual problems (vaginal dryness, inability to orgasm, sexual desire, etc.). • Receive dignified treatment from • Accept your own sexual development professionals, who cater to diversity (without the need to repeat the and offer resources, facilities, expectations of femininity). and alternatives to treatment or treatment options. • Isolation. The need to feel supported (by a peer group or reference group of women with CAH, AIS, MRKH or other syndromes). Woman with CAH • Receive dignified treatment from Infancy/adolescence professionals, who cater to diversity and offer resources, facilities, • Learn about your own specific and alternatives to treatment or biological condition and the function treatment options. 34 of your body (also be aware of when Area of Citizen Rights, you need to request help in response • Accept the identity / the role of Participation and Transparency to a possible adrenal crisis). the patient (ongoing check-ups,

An analysis of the different procedures, medication, etc.). realities, positions and • Understand the need to take requirements of the intersex / DSD population medication on a long-term basis in Barcelona (corticosteroids, hydrocortisone, Adulthood dexamethasone, etc.). • Overcome the fear of rejection, in • Become familiar with the symptoms addition to accepting and loving of an adrenal crisis or metabolic your differences. Self-esteem and decompensation so that it can be empowerment. monitored, and learn to self-regulate medication in accordance with stress • Assume infertility without treatment, situations (fever, illness, etc.). and/or consider other alternatives to regular motherhood (“you are a • Living with differences. The “dualism whole woman even if you are not a of normality” and accepting mother”, or adoption). difference itself (ambiguous genitalia). • Overcome potential sexual problems (vaginal dryness, inability to orgasm, sexual desire, etc.). Adolescence/Early adulthood • Receive dignified treatment from • Assume infertility without treatment, professionals, who cater to diversity and/or consider other alternatives and offer resources, facilities, to regular motherhood (“you are a and alternatives to treatment or whole woman even if you are not a treatment options. mother”, or adoption).

• Become familiar with and accept the possibility of masculinisation in response to the discontinuation of treatment. Woman with AIS • Accept the identity / the role of the patient (periodic check-ups for the Infancy/adolescence risk of osteoporosis, surgery, long- term medication, monitoring of • Learn about your own specific hormone levels to avoid secondary biological condition and the function effects, etc.). of your body (XY chromosomes, androgen insensitivity, hormone • Receive dignified treatment from production, absence of female professionals, who cater to diversity reproductive system, etc.). and offer resources, facilities, and alternatives to treatment or • Face the likelihood of gonadal treatment options. surgery (gonadectomies, orchiectomy or orchidopexy) or the 35 “normalisation” of genitalia (vagina, Adulthood and external genitalia in PAIS, Area of Citizen Rights, Participation and • Overcome the fear of rejection, in Transparency

• Living with differences. The "dualism addition to accepting and loving An analysis of the different of normality" and accepting your differences. Self-esteem and realities, positions and requirements of the difference itself (XY women, male empowerment. intersex / DSD population gonads, absent or partial vagina, in Barcelona absence of menstruation, uterus and • Assume that it will not be possible non-viable biological maternity). to conceive a child and/or consider other alternatives to regular motherhood (“you are a whole Adolescence/Early adulthood woman even if you are not a mother”, or adoption). • Accept the absence of menstruation (a woman’s rite of passage). • Overcome possible sexual problems (fear of rejection, engaging with new • Assume infertility. partners, etc.).

• Face the likelihood of gonadal • Accept the identity / the role of the surgery (orchiectomy) or the patient (periodic check-ups for the “normalisation” of genitalia (vagina). risk of osteoporosis, procedures, long-term medication, monitoring of • Potential masculinisation in hormone levels to avoid secondary response to the discontinuation of effects, etc.). treatment (in the event that you have not had a gonadectomy in PAIS). • Receive dignified treatment from professionals, who cater to diversity • Accept your own sexual development and offer resources, facilities, (without the need to repeat the and alternatives to treatment or expectations of femininity). treatment options.

• Isolation. The need to feel supported (by a peer group or reference group of women with AIS, XY women, etc.). In MRKH syndrome

Infancy/adolescence • Isolation. The need to feel supported (by a peer group or reference group • Learn about your own specific of women with MRKH, AIS or vaginal biological condition and the agenesis). function of your body (the absence of menstruation and female • Receive dignified treatment from reproductive structures —uterus, professionals, who cater to diversity vagina—, etc.). and offer resources, facilities, and alternatives to treatment or • Face the likelihood of surgery for the treatment options. “normalisation” of genitalia (vagina).

36 • Living with differences. The "dualism Adulthood Area of Citizen Rights, of normality" and accepting Participation and Transparency difference itself (absent or short • Overcome the fear of rejection, in

An analysis of the different vagina, absence of menstruation, addition to accepting and loving realities, positions and uterus and non-viable biological your differences. Self-esteem and requirements of the intersex / DSD population maternity or surrogacy). empowerment. in Barcelona • Assume that it will not be possible to Adolescence/Early adulthood conceive a child and consider other alternatives to regular motherhood • Accept the absence of menstruation (“you are a whole woman even if you (a woman’s rite of passage). are not a mother”, or adoption).

• Consider the limitations of wanting • Overcome possible sexual problems to become a mother (a fundamental (fear of rejection, engaging with new aspect of the social construction of partners, etc.). femininity). • Receive dignified treatment from • Face the likelihood of surgery for the professionals, who cater to diversity “normalisation” of genitalia (vagina). and offer resources, facilities, and alternatives to treatment or • Accept your own sexual development treatment options. (without the need to repeat the expectations of femininity). In Klinefelter syndrome

In relation to Klinefelter syndrome, Psych2.Hosp1 added the following information:

School plan Emotional adaptation plan

Infant school: adapting to peer group, Commencing hormone treatment: how motor difficulties, learning difficulties to tell a pre-adolescent about their that will require going to the school illness and adapting to treatment. psycho-pedagogic Evaluation Team (PET) for alternative treatment plans Adolescence (early stimulation practices, psychomotor re-education). Physical differences that the child will have in contrast to his/her peers. 37 Primary and secondary: adapting to peer group, motor difficulties, read- Specific aspects of puberty Area of Citizen Rights, Participation and ing/writing difficulties that will require Transparency going to the school PET for alternative Sexual relations, difficulties An analysis of the different treatment plans (psychomotor re-edu- realities, positions and requirements of the cation, reading and writing skills re-ed- Valuing confidentiality: whether or intersex / DSD population ucation, psychotherapy). not to make it public in Barcelona

Adolescence: study skills. Adolescence/Early adulthood

Assume infertility

The dualism of a different identity

Work through the “phantom of homosexual”

Adulthood

Assume infertility The dualism of a different identity

Work through the “phantom of homosexual”

Whether marriage is feasible of not. Self-marginalisation

Input from parents

The concerns and issues that affect Below is a section of the testimony parents which were brought up during given by Ma-Nr5: the interviews are related to: When the doctor taking care of me • Overcoming confusion, sorrow, and explained that it was almost certainly feelings of loss which arise when androgen insensitivity, he explained a child is born who is not “perfect”. to me all of the worst case scenari- Living with imperfection is even more os that could happen to my daughter challenging when one of the first and immediately asked me if I wanted things they advise you to do during an abortion. I had never even heard of pregnancy, when they know that DSD the existence of something like this is present, is to have an abortion (I’m referring to intersex conditions) (Ma-Nr5). and together with the shock and un- likely prospect of a happy life after 38 • Understanding the nature of intersex what the doctor explained to me, my Area of Citizen Rights, differences in girls and boys and first thought was yes, I want an abor- Participation and Transparency whether medical care is required. tion. I didn’t want to bring a person

An analysis of the different into the world for them to have a re- realities, positions and • Making informed decisions about ally awful life. The time came to say requirements of the intersex / DSD population tests and/or surgical procedures. goodbye to the baby and I remember in Barcelona speaking to it in my belly and I said: “I • Explaining the nature of intersex hope you will be born in a better posi- variations to relatives, friends or tion next time”. I was resolute... // This caregivers. idea stayed with me for a while, until the shock had passed (I think it was • Understanding the function of one day, or rather, the time it took me human sexuality and the diversity to start figuring out what AIS was). I that exists. contacted a geneticist and they began analysing me and my husband. In This process requires them to over- those days, when a week had passed, come the following issues: in which we had been investigated and the shock was starting to sub- • Conflicts or obstacles that come side, we realised that our daughter up during interactions with medical wasn’t sick, she would be born and professionals and the healthcare we would love her. system. The vulnerability of parents is undenia- • Information management —what to ble. They have to make decisions with- explain and who to explain it to— out making mistakes. The ambivalent with regard to your sons, daughters, position that parents find themselves their partners or, in general, in any in is described as the feeling of hav- interpersonal relationships. ing to protect their sons and daughters from a hostile social world, but at the • Concerns about the future in terms same time, protect them and accept of the stigma associated with them as they are. They feel like they being different, gender identity, have to do everything they can for their gender roles, sexuality and intimate children so that society doesn’t reject relationships. them —including normalisation surgery— and at the same time, accept their individuality. During the interviews, the term “emotional trauma” expectations incite extensive gender came up which is used to talk about policing, in line with dichotomous mod- the dilemmas that parents suffer when els and exclusions of masculinity/fem- making decisions; from the suffering ininity. On more than one occasion, the stemming from their expectations, to statement “the true sufferers are the difficulties in or lack of communication parents” was echoed. H-inter believes with their children. that it is necessary to start working in this direction: “Help the parents with One of the main requests from par- the process of “I have to offer him/her ents, resulting from the level of anxi- a solution now, right now”, because ety that it causes, is for an appropriate obviously, “my child cannot meet all referral and the coordination of care of these expectations”. Then, you start procedures so that an accurate and to question all of these expectations timely diagnosis can be made. “One of because maybe they don’t need to be 39 the biggest struggles is for illnesses to met”. Psychological assistance and be detected at an early age. If you see clear information for parents is another Area of Citizen Rights, Participation and a girl with a short stature, a squint, one of the main requests: “Don’t they Transparency abnormality of the palate, they should realise that we feel lost. You need psy- An analysis of the different be able to pick up on that” (Ma-Turner). chological help because you don’t think realities, positions and requirements of the you’re competent enough” (Ma-Turner). intersex / DSD population Another one of the doubts expressed in Barcelona refers to the handling of information The experience is even harder in those for the children. What should we be cases when parents are faced with the explaining to them about their specific diagnosis when a child is born with DSD, when and how. This is an expe- ambiguous genitalia, and the condi- rience which induces a lot of anxiety. tion calls for a gender to be assigned. Ma-Turner sought help from an educa- These parents display fear in response tional psychologist to address this pre- to uncertainty over their child’s future dicament. She explained that “there relationships and their ability to have are people that dump all of the informa- intimate sexual relations. Stress and tion on you in one go. Just what to tell shock are words that come up repeat- the school and that’s it”. But the edu- edly, in addition to grief, sorrow, rage, cational psychologist she approached anger, and shame. They share common recommended that information should reactions on finding out the diagno- be provided gradually and frequently so sis, in relation to the decision-making that it can be digested, and that’s what process for gender assignment, the we did: “There’s no need to tell them operations that will be performed and more than they need to know at their the administrative procedures. They age. I wouldn’t say: “You don’t have ova- talk about experiencing disorienta- ries, you won’t have children”. It has to tion, deep confusion and frustration. be age appropriate. The stress suffered by these parents is even greater when doubts arise about Across the board, parents of people the diagnosis or regarding optimal care. with DSD in the groups that were consulted reiterated the same anxiety, anguish, guilt and uncertainty in the pursuit of the best medical attention and in relation to effectively managing the differences that their children have within their close social network. High

Input from professional health psychologists

Initially, some medical professionals With regard to the difficulties and openly reflect on the privileged position obstacles that arise in exercising their that they seemingly hold, however, this duties and providing medical care, is the same privilege that places them once again, issues concerning coordi- in a vulnerable position, since they have nation are highlighted, in addition to to accurately meet the expectations of the need for a unified approach. Never- their patients, and those of the general theless, in order to unify the approach, public. They are required to be experts, a minimum level of consensus first good advisers, that never make mis- needs to be reached about what the takes and answer all personal ques- adequate care model should look like. tions outside of the scope of diagnosis. With regard to normalisation surgery, this issue is often an insurmountable obstacle among medical professionals:

40 I think that it would be worth uni- Area of Citizen Rights, fying our approach so that we all Participation and Transparency operate in a similar way, don’t you

An analysis of the different think? For example, we differ in oth- realities, positions and er areas, especially when it comes requirements of the intersex / DSD population to pathological conditions that are in Barcelona present from birth, about whether they should be fixed before the child goes to nursery. Because, normally, they constantly need changing, and if they have already been operated on before going to nursery, then no explanation will need to be given. We once saw a case of CAH in a high-class and well educated family, they used to go out of town —and it wasn’t even a small town— to buy hydrocortisone so that nobody would suspect anything. Do you see what I’m saying? That’s even considering that hydrocortisone is used for many things (Cap.CirPed.Hosp4). IN SEARCH OF ANSWERS

The end of secrecy and concealment

Secrecy in medical consultations, at ning the group’s helpline, etc.). Lastly, home, between couples, and in society, is it calls for professionals to include nothing more than a reflection of a much the association’s contact information more serious social pathology. We are (email address and website) in articles talking about sexism, homophobia and and programmes. transphobia. The recognised expression “intersexophobia” is also used.vi From the interviewees’ perspective, the solution is not to pressure people In recent years, media interest in inter- into appearing on television shows, sex/DSD people has been growing; but to take advantage of the powerful people with intersex variations or dif- media tools to raise awareness of the ferences of sex development are in issue and to broadcast information increasing demand with the media, that affected individuals wish them to with requests to appear on radio and transmit. With regard to the fact that 41 television programmes or in press arti- women are primarily the ones who cles. However, because secrecy con- remain hidden and shrouded in ano- Area of Citizen Rights, Participation and tinues to be a key issue in the lives of nymity, we must make sure that peo- Transparency these people and their families, there is ple understand the gender logics that An analysis of the different a lot of debate about finding a balance propel this reality and condemn the realities, positions and requirements of the between the need to retain privacy and implicit discrimination. intersex / DSD population raising awareness of the topic. The in Barcelona support groups are clear about visibil- Parents demand the development ity being a priority, but not at any cost. of guides and information, but seem Associations such as GrApSIA that doubtful about the vulnerable situa- openly pursue the social normalisation that their sons and daughters find tion of AIS sufferers and eradicate the themselves in: “I can’t post a photo stigma which has always surrounded until she decides to get out of there” them, have felt obliged to protect their (Pa-Grapsia) Raising the visibility of members to prevent their testimonies this community is considered a funda- from becoming sensationalist stories mental strategy in the fight against the or offensive headlines. In turn, they social stigma that tows these situa- have developed a good practice guide tions, but parents feel conflicted about for the media which aims to guaran- how to do that without putting their tee an “earnest and truthful approach” children at risk; in response to what is considered to be a “complex and sensitive” subject. Regarding the question of visibility, It calls for professionals to act with obviously, by the time these people prudence and patience, it advises that are adults, they can decide for them- the association is run by volunteers selves. I think that she’s still so young who have their own jobs and their own and that she will have to decide for lives, and that they only have a small herself when she’s older. I don’t know amount of time to devote to providing if that is how it should be, equally as the services that the association offers a mother, I could say: “Well, this is (answering e-mails, research, updating how it is and I have decided to make the group's website, establishing con- it visible”. In other words, I don't know tact with doctors and specialists, man- (Ma-Grapsia).

In healthcare:

We have seen that many of the prob- ate treatment, restrictions on get- lems highlighted by people with DSD ting a second professional opinion or and their relatives are related to issues because they are referred to a hospi- surrounding health and the medical tal in another autonomous community. care they receive. The Catalan Associa- Some of these administrative obsta- tion of Klinefelter Syndrome expressed cles are the result of the low incidence it this way: of these conditions, which has forced them to be included under the umbrella With regard to healthcare, we would of “rare diseases” or “low-frequency” say that, since KS was defined, many by FEDER (Spanish Federation of Rare studies have been published to as- Diseases). Precisely because of its low sess the cognitive and neuropsycho- incidence rate or infrequency, it pro- logical profile of it. These patients duces a state of distress in the patient present a mild intellectual impair- in response to the uncertainty of the 42 ment of differing degrees, including diagnosis and the difficulty in finding Area of Citizen Rights, particular deficits in comprehension, the right treatment. (Canals, 2002). Participation and Transparency memory, language processing, and

An analysis of the different executive functions which may or may P-CAH condemned the fierce con- realities, positions and not be evident during childhood. That troversy within the CAH association, requirements of the intersex / DSD population is why, on behalf of the association, which has caused many adult women in Barcelona we are asking for knowledge from the and mothers of girls with CAH to staff of the PET and the CDIAP (Cen- become worried. This controversy is tres for Early Childhood Development about the use of dexamethasone in Services), treatment carried out by 10 pregnant women, who previously specialists in early stimulation, phys- gave birth to a girl with CAH (they are ical therapists (patients with SK re- carriers) and that, in response to the quire specific therapy to strengthen possibility of having another daughter their muscles) and speech therapists with CAH, have been prescribed this for children who present difficulties steroid, as a prophylactic measure to in language development, as it has prevent the masculinisation of their been proven that childhood interven- daughters. Perhaps it is this research tion helps to improve social inclu- in the field of DSD that has resonated sion. As for those with SK who have the most, due to its severe health reached adulthood without receiv- implications and because of its eth- ing this type of medical attention or ical significance. There is a strong who were not diagnosed during child- connection between CAH, lesbianism, hood, we are requesting labour mar- disinterest in motherhood, or a pref- ket inclusion and social care which is erence for boys’ toys and masculine personalised and conducted in col- behaviour. Therefore, dexamethasone laboration with other associated pro- has been used since the 1970s to pre- fessionals, such as the psychologists vent the suspected physical and/or who take care of them. psychological virilisation or masculinisation, a result of the suspected The requests point directly to the effect of testosterone on the foetal very structure and organisation of the brain. The controversy surrounding healthcare system: their healthcare the use and testing of this molecule facilities, their skills, the difficulty in in these pregnant women is due to accessing professionals with experi- the fact that, in addition to not pre- ence in the field, the obstacles that venting the true health risks —for hinder their diagnosis and appropri- example, dehydration (through salt loss)— and resulting in major health rience in these situations and/or do not risks for the mother, it actually seeks have the technological resources avail- to prevent lesbianism and the sup- able to them to make a diagnosis. In posed masculine behaviour of these these cases, they usually phone hospi- girls (Dreger et al., 2012).vii tals of reference to inform them, search the Internet, or send their patients P-CAH explained in detail how dexa- directly to other centres. Regarding methasone crosses the placenta and diagnostic tests, lab results, imag- the hypothalamus. It is administered ing, etc., we usually send the samples from the sixth week of pregnancy to to these centres of reference, which women who have previously given causes a delay in receiving care. birth to a daughter with CAH. Admin- istration of the drug is discontinued if Some of these medical professionals the XY chromosome is present when recognise these shortcomings in care 43 the amniocentesis is performed to and propose potential solutions to us, check the karyotype. If XX is present, such as for all cases to be handled cen- Area of Citizen Rights, Participation and the drug is administered until the end trally in specialised units and hospitals Transparency of the pregnancy. The mother states that have better resources available An analysis of the different that, out of the ten mothers who were and multidisciplinary teams (MDT) in realities, positions and requirements of the given the treatment, two babies were place. Broadly speaking, the majority intersex / DSD population in Barcelona born with no problems and the other of people with intersex variations/DSD girls had deformities, no eyes, no ears assume that the patronising care or the or cerebral palsy. This is why they made instability in their medical care process allegations that the doctors didn’t has been a generational issue and they inform them about these serious con- are optimistic about the future of care. sequences and that, although the doctors are aware of these outcomes, they Across the board of medical profes- still view this treatment as a success. sionals that work in public hospitals P-CAH bluntly asserted that: “I would of reference where care is provided prefer a million times over to subject for DSD, their opinion is that the solu- my daughter to genital surgery than to tion can be found in tertiary level care subject her to these treatments. // She in hospitals of reference, which have can lead a normal life with hyperplasia, a multidisciplinary level of care avail- but not with cerebral palsy”. able. The point at issue is to facilitate the referral or channelling of patients The ignorance about intersex people to these centres. As for Cap.EndPed. or DSD and generally, many other rare Hosp1, the centres should also be diseases (RD) extends to many medi- interconnected in order to make cal professionals, especially those who referrals possible, since, for example, constitute the first link in the medi- at Hospital Vall d’Hebron they focus cal care process, those that occupy more on treating issues related to the the position where the search for help pathological anatomy and diagnos- begins. This refers to family doctors tics, whereas at Hospital Clínic they that work in primary care that play a are experts in gender. decisive role in referring patients to the appropriate specialists. The ignorance about these conditions, for their part, increases the patients’ vulnerability. These professionals, like those who work in small hospitals, have no expe- Transmitting information present, and undoubtedly reinforce the perception of a “flawed body” with an The first medical consultation or the undeniable masculine undercurrent. moment of diagnosis is often defined A consistent theme in the interviews as enlightening, as well as traumatic: is about the initial experiences of the “I knew that something was wrong with first medical consultation in which me and I found the answer”, but at the a woman is informed about her AIS same time, it reflects the lack of gen- diagnosis, and she is immediately told der awareness among medical profes- that, if it wasn’t for an error in sexual sionals. Individuals who are “sufferers” differentiation, she would now be a require more sensitivity from doctors man. “you should have been a guy”, “in when they are providing explanations essence, you are a man”. Or, in P-Roki’s and in the diagrams that they use. They experience, when he was diagnosed call for an end to photographs of bare with MRKH syndrome, his identity as 44 genitals; of genitals on the operating a woman was destroyed in the precise Area of Citizen Rights, table, with people with pre-operative moment that his doctor said these Participation and Transparency quadrants and lines marked out in words: “You’ve been lucky, I could have

An analysis of the different black. Cap.EndGin.Hosp2 who is a spe- told you that we don’t know if you are realities, positions and cialist in gynaecological endocrinology, a man or a woman”. This unfortunate requirements of the intersex / DSD population explained that: comment has always made him wary in Barcelona of the biology of this supposed “man”, It has a psychological impact on this because of his flat chest, his prefer- type of patient. I dedicate a lot of time ence for masculine activities and his to explaining the difference between refusal to wear dresses. Some women chromosomal gender, gonadal gender agreed that they could only make deci- and phenotypic gender. In fact, those sions about their own health when they with Morris [another name for AIS], felt free to ask questions. are possibly the most womanly of all women. Because, obviously, they have Another widespread request with no ability to respond to androgens. respect to information sharing is that But in Swyer, for example,..., which it should be communicated in a posi- is also XY, they have a uterus and are tive way: able to have children through embryo donation. Clearly, calling these M-Grap2: It’s the same thing that hap- people men is barbaric. I have met pens when you decide to explain it to patients who have come from other someone and you have already digest- centres... and they have been psycho- ed the information sufficiently: you logically damaged because they have don’t convey the information in such a been given information which is a lit- tragic way. We’ve talked about it, you’ve tle, how to put it, crude. already gone through this process, so you don’t convey such tragedy. At the Some women in the GrApSIA group same time, perhaps some people un- recall negative experiences at the derstate it. People don’t give it much moment of being given information. more thought if you don’t. They explained that, in group meetings, they were frequently shown drawings M-Grap1: It makes me emotional to or images of gonads which are visibly think that in twenty years time, a child testes or masculine genitalia, with a will go to the doctor, perhaps when she penis and scrotum. These are details doesn’t get her period,and he will tell which never go unnoticed among those her: “Ah, well it’s AIS, but it’s OK”. That she won’t have to go to the doctor in ble alternatives, “if you are a woman, secret to be treated for something, she it is not understood that you can have deals with it and that’s it. I think that by another form of sexuality without pen- then we will have advanced a lot... That etration. They don’t explain anything they won’t need to explain anything, else to you”. M-Nr5 also claimed that and if they do explain, it will be from a doctors didn’t question whether she position of absolute acceptance (Dis- was a man or a woman, since she had cussion group). already suffered for not being a conventional woman In this respect, we make sure that the tests applied dur- Regulating sexuality in the healthcare ing psychological evaluations, such as sector the Gender Identity Questionnaire (GIQ) have a highly polarised and dichoto- Despite substantial change in the rela- mous view of gender. 45 tionship and dialogue between doctor and patient, one of the biggest medi- The regulations also use a profoundly Area of Citizen Rights, Participation and cals limitations is still centred around limited model of sexuality which does Transparency the regulation of sexuality. From a crit- not offer possibilities to the diversity of An analysis of the different ical point of view, the medical model real bodies: realities, positions and requirements of the has based its interpretation of biology intersex / DSD population in Barcelona on a cultural model that is both sexist It is based of a series of expecta- and homophobic; which is why people tions: how the genitals should look, are considered “abnormal” if they differ how the relationship should be... / For from the binary model of “masculine/ instance, in Sexing the Body, Faus- feminine” or “man/woman”, perceived to-Sterling explicitly said that she as the combination of XY chromo- was surprised by the fact that indi- somes, testes, penis, etc. for men, viduals with ambiguous genitals had and as the combination of XX chromo- managed to lead successful marital somes, ovaries, vagina, etc. for women. lives. Even she had been surprised. We have reiterated the widespread // You say: “Obviously, you share the complaint that healthcare practices opinion that, if your genitals are un- and the management of treatments are usual, sexual relations cannot be governed by assumptions. More specif- satisfying”. Yes, absolutely. You have ically, that the gender categories used to explain further then. I have done to refer to many people and evaluate it. But it’s true that when you have their backgrounds (personal, sexual, ambiguous genitals, before doing an- “if you’re married”, “if you have a part- ything, you have to provide an expla- ner”, etc.) or the recommendations gov- nation and you have to be very sure erning healthcare practices or surgical about what you want (H-inter). procedures, do not capture the gender experiences of a significant number of In relation to men with hypospadias, individuals with intersex variations. H-Hipos explained that:

M-Grap2 explained that, according to There is a study about hypospadias doctors, vaginas regulate the timing of that was published two months ago. sexual relations, in other words, without What does a woman want sexually a vagina, sexuality is not possible, and from a human penis? Sometimes our that wanting to have sexual relations urethras are in a different place or marks the moment to create a vagina. we have what is known as curvature She explained that there are no possi- of the penis. In the end, the study showed that women don't really care to feel proud like this. If I had found where the urethra is". What I mean is a more open person who had of- that they operate on hypospadias at fered me a more positive outlook, it the site where the urethra is, but ul- wouldn’t have taken me years to ac- timately, it is not a sexual problem. If cept myself. I would have felt more a guy has hypospadias, a girl wouldn’t supported. That’s what it’s about, even notice if the guy knows what helping me psychologically with my he’s doing, if he has an erection, etc. body. I would have waited until I was “This is my body, this is how I am. 22 years old to begin my sexual ad- And there's nothing abnormal about venture. I didn’t know if I was capa- it”. I think that abnormality actually ble of giving pleasure. But, it would comes from medical discourse, from have been great if someone said to “it cannot be like that”. / “ The prob- me: “Yes, with a 10cm penis, it works lem is that penetration won’t be pos- perfectly, but it also depends how you 46 sible”. Not true, I have friends that move, how you perform, but there are Area of Citizen Rights, have children. You can change posi- other things that are important, such Participation and Transparency tions. Foreplay and lubrication also as personality”. (Discussion group).

An analysis of the different help, the penis will go in eventually. realities, positions and There’s trust between both people. requirements of the intersex / DSD population Competencies The MDT and expert in Barcelona He insists that, for all of the training patients given to new junior doctors in molecular genetics and communication skills, Barcelona has been and continues to it would be impossible to implement a be a city of reference within Spain for new model of "patient-centred” care if intersex and DSD medical care. This these beliefs remain intact. A model of means that some health centres and care which positively values the possi- some of their employees have a long bility of having another type of sexual- history of catering for these situa- ity which is not based on intercourse tions; but, besides that, they have also and reproduction is actively called for: become centres of reference and the recipients of many dissatisfied peo- M-Grap3: What's with vaginoplasty? ple from other autonomous communi- Or with dilators? In other words, why ties who have arrived in search of an can’t I have a short vagina and that’s accurate diagnosis, help and special- that? And enjoy my sexual encounters ised care . Among some of the greatest anyway. It’s strange isn’t it? You go to centres of reference mentioned in the your appointment and they tell you interviews are: that in order to have a sex life, either you will have to have vaginoplasty or • Hospital Clínic, with the most carry out a dilation process. experience in adult endocrinology.

H-Hipos: We ask ourselves questions • Sant Joan de Déu Children’s Hospital, that ordinary people wouldn’t ask. It's specialised in paediatric care very important to have this question (the department of paediatrics of written down and, let’s say, a stand- Hospital Clínic). ard but positive response for it. Then, I don't know. But for me, because • Santa Creu i Sant Pau Hospital, I have a small penis, it’s going to be with the most experience in hard for me to accept it. It’s going to gynaecological care for adults be hard for me to feel good like this, with DSD. • Hospital Can Trias (Germans Trias social psychologists that work outside i Pujol), with a long history of care of the public health systems. The bio- for individuals with DSD, founded medical specialist responsible for and by surgeon Joan Martínez-Mora in most familiar with these situations is the 1970s. usually the paediatric endocrinologist; however, as we have seen, and accord- • Hospital Vall d’Hebron, renowned in ing to what medical professionals who genetics, diagnostics and research. were interviewed have said, the person who assumes the professional special- The last two were the most frequently ist role, head of service, coordinator mentioned by people from outside of and interlocutor with the patient and Catalonia who requested to be treated family, in these cases depends more in a hospital of reference in Spain. Other on the tradition and expertise of each centres and private clinics were also hospital, as well as the involvement 47 mentioned during the interviews, all of and initiative of each professional. In which were discovered in response to fact, many people request that it is Area of Citizen Rights, Participation and dissatisfaction with public care. Some always the same medical professional Transparency foundations with experience in treat- that sees them, without any additional An analysis of the different ing DSD were also mentioned, such as doctors or unknown medical students realities, positions and requirements of the the Puigvert Foundation or the Doctor around, because of the requirement to intersex / DSD population in Barcelona Robert Foundation (The Autonomous bare their bodies all of the time, and University of Barcelona). the issue of intimacy and trust is fundamental. The most read and valued guide for medical professionals about DSD care With regard to the structure of the MDT in Spain continues to be the Consen- in the hospital of reference where Cap. sus Statement on Management of CirPed.Hosp2 works, he explained: Intersex Disorders (Lee et al., 2006), a North-American and European medi- Here, we [referring to paediatric sur- cal care standard which is now known gery as the team in charge] engaged as “Optimal clinical management of neonatologists, because it’s a time, individuals with DSD”. The Consensus that moment of birth, when a diag- established that a multidisciplinary nosis may be needed if a child is born team is the recommended care setting with ambiguous genitals. We had and and to which people with DSD should be still have paediatric endocrinologists referred for ethical care(Lee et al., 2006; engaged, they are Doctor [name] and Hutson et al., 2012). An expert multidis- Doctor [name]. We have the laborato- ciplinary team composed of an array of ry engaged with Doctor [name]. On a sub-specialist paediatricians in endocri- molecular biology level, we have Doc- nology, urology/surgery, psychology/psy- tor [name] or Doctor [name] from Bil- chiatry, gynaecology, social work, nursing bao is involved. With that in mind..., and specialists in bioethics. what we couldn’t be and didn’t want to be —because we couldn’t and During the interviews, we asked each didn’t want to be and we had never of our interviewees about these teams, considered it— was to be alone. If from the professionals who make up they have done things in other places, the teams in Barcelona’s hospitals of we have taken advantage of this be- reference, to individuals diagnosed cause it’s not worth repeating these with these conditions and parents, and things, for cost reasons, etc. Later also other medical professionals and on, when they needed psychiatry, we engaged them too. And psychology, presented with a case like this, they but fundamentally, psychiatry. Then, make a phone call to exchange infor- we collaborated with gynaecology mation, advice, doubts and/or recom- and obstetrics for cases of GrApSIA mendations, and the patients at most, in adults. We also received help from only need to make a trip to the hos- urology. In other words, we could say pital to confirm the diagnosis and/or —without any word of a lie, quite the treatment, and then they go back to opposite— that we are multidiscipli- being treated by their doctor in their nary. We always pull in whomever we home town. think can help the patient and nothing more. Cap.EndGin.Hosp2 explained the shortcomings of this type of patient We also asked which obstacles in par- care, and a possible solution through ticular impede the creation of these the creation of care coordination units: 48 MDTs in our country, what would their Area of Citizen Rights, opinion be about the optimal structure Many patients do not go to see any- Participation and Transparency for these teams, and most importantly, body, they do not visit any profession-

An analysis of the different whether they believe that this method al because they believe that it will realities, positions and will solve the real issues that affect solve nothing, they remain silent. And requirements of the intersex / DSD population individuals with intersex variations/ others that do visit medical staff find in Barcelona DSD and their families. that they don’t know either... Because these are very uncommon patho- A significant portion of the people logical conditions. They do the best interviewed believe that, if these that they can, but they are unaware teams functioned in the way that the that there are places with special- Consensus recommends, they would ist units where this type of problem attain this level of optimal care. In can be treated. For example, Turner order for that to happen, we must syndrome affects one in every 2,500 improve coordination, to organise for women. So, of course, in our area patients to be referred appropriately, there should be 500 patients around, as well as ensuring that there is ade- but we don’t see them. Who is treat- quate psychological care within the ing these women? It must be their teams. They also claim that the prob- general practitioners, and if they have lems that exist today occur because a specific problem, they are referred this model has still not been imple- to a particular specialist. I’m not try- mented, and because of shortcom- ing to say that this is a bad thing, but ings in the medical framework and what would be better is for them to the availability of staff and financial be managed in a care coordination resources. Until now, both the treat- unit, because these patients usually ment and referral procedures for have a variety of related pathological patients in these cases have taken conditions. They have a higher risk of routes based on informal informa- aortic dissection, a higher risk of hy- tion and care, and have even been pothyroidism, etc. It is an extremely the result of random events in some complex condition. cases. Cap.CirPed.Hosp4 relates in detail that, from meeting other Similarly, both patients and profes- professionals when attending con- sionals report difficulties in treatment ferences, for example, these other when they move from the paediatric professionals get to know their level age group to the adult one. The prob- of experience, and when they are lems could be solved, in part, by imple- menting a model of coordinated, attends to boys with KS and provides integrated and continuous care: individual and group therapy to their parents. Despite stating the limita- Well yes, I have also had major prob- tions in care (this is the only unit, the lems finding someone who will moni- only psychologist, for all of the rare dis- tor my condition, most of all later on, eases), it also makes reference to the when I’m an adult. Obviously, they under use of services, due of a lack of help you more in the Paediatric de- knowledge among patients and their partment, but after that, you don’t parents. In any case, both the patients know where to go. Actually, they di- and their parents complain about the agnosed me in a rather miraculous lack of economic support available way. The paediatrician noticed that I for treating health needs that are not wasn’t growing as much as I should covered by social security. In many of and diagnosed me at around twelve these situations, the routes taken in 49 years old. And they were giving me the pursuit of health intertwine in a growth hormones. Nowadays, it is labyrinth of medical centres, private Area of Citizen Rights, Participation and usually diagnosed much earlier: there practices, associations, etc. medicines Transparency

are mothers that already know that or trips that involve an ongoing finan- An analysis of the different their two-year-old daughters have it. cial outlay. Ma-Turner detailed the care realities, positions and requirements of the Hence, they give them hormones from pathway and financial cost required to intersex / DSD population in Barcelona a very young age (M-Turner1). take her daughter to an educational psychologist to improve her ability to Patients are monitored closely during process information; to a speech thera- the paediatric stage, but when this pist, because of the difficulties she has period finishes, these individuals end in pronouncing words due to her ogival up in the general health service. They palate; and to vision therapy, because are enlisted as normal patients, but she was born with a strong squint, etc. they have related pathological con- To all of this, she has to add the cost of ditions. There are centres where they all the medication which is not covered can be treated in a more integrated in full, and the fact that there are often way, but they are not aware of these long periods of time before starting options, neither the patients nor the treatment for the claim to go through general practitioners know this. Al- the medical committee. though they can treat them perfectly well most of the time—I’m not saying It took a year to begin the growth that they don’t have the ability to do hormone treatment because it had so—, this is a type of patient that has to go through the medical commit- the opportunity to receive more per- tee and be approved. [Her special- sonalised care for their own specific ist] said to me: “They will give it to condition. Something which is very her because it meets her needs, but common in Turner syndrome (Cap. with the delays in Health...” I lost a EndGin.Hosp2). year and a half because of the system. I thought about paying for it my- Many professionals recall the scarcity self, but it would have been between of resources, and paradoxically, the 3,000 and 4,000 euros per month. under-utilisation of existing resources, One injection per day in the buttock, because they are not very well distrib- where it hurts the least, and they uted. For example, the Unit of Rare Dis- give you the treatment at the hospi- eases at Hospital Vall d’Hebron has tal pharmacy for several months. // a clinical psychologist available who Three year old girls are already being injected. We had to wait more than a means of exchanging clinical infor- eight years and it could have been mation between healthcare centres longer.// The speech therapist is not within a virtual environment, and not covered by social security because only among experts, with the aim of it is considered an aesthetic treat- standardising guidelines and improv- ment. But her bite is all wrong, it is ing clinical practice and research in a result of Turner. // Vision therapy addition to the understanding of these costs 60 euros each week. She was conditions. In Spain there is the project born with a squint because of weak for the National Rare Diseases Registry muscles. It can only be corrected of the Carlos III Health Institute (ISCIII), through surgery. We went through coordinated and managed by the Insti- the health insurance and had it op- tute of Rare Disease Research (IIER), erated on. Social security was cut and belonging to the ISCIII and the back. // Oestrogen treatment will CIBERER (Centre for Biomedical Net- 50 start when she is ten years old, like work Research on Rare Diseases). This Area of Citizen Rights, with the other girls. Later on, she registry has three different data entry Participation and Transparency will be given others, one of them is points, namely: population-based reg-

An analysis of the different the pill, so that she doesn’t devel- istries with data provided by the auton- realities, positions and op osteoporosis, etc. They have to omous communities; patient records requirements of the intersex / DSD population do a blood test every six months to recording patient outcomes through in Barcelona measure oestrogen levels, and to data provided by patients themselves, check whether the hormones are and the data provided by participating having any secondary effects, such professionals, research networks and as diabetes or thyroid problems. [Her medical societies that maintain agree- daughter] started having hot flash- ments with ISCIII. es. [Her doctor] said to me that her body was calling for change but her In different ways, all of the proposals gland wasn’t allowing it. She already point to a "translational medicine", started developing breast buds. I which is interdisciplinary and mul- have to pay for this medication. It’s ticentric. In terms of a central place an oestrogen formulation that I pick (or place of reference) which could be up every two months and it costs 50 considered most appropriate for care euros. And it does not end here. coordination, some people claim that it should be the hospital and its MDT, Cap.Hosp1 emphases all of the collab- "because they are usually the first to orative projects that they have been detect or receive individuals with inter- developing in recent years and how they sex variations/DSD" or "because that promote and provide support to inter- is where parents release their anguish national partnerships and meetings and grief", and for other interviewees, between professionals and “affected primary care centres would be the individuals” (DSD support groups). The most convenient because they cover most important one mentioned was the prevention and education. According to COST project (European Cooperation Gin.Sex1, the latter option would also in Science and Technology) BM1303, help to destigmatise this population DSD-net A Systematic Elucidation on and to promote their health through a Differences of Sex Development of the model which encourages independ- Horizon 2020 project, and some initia- ence and self-care. The gynaecolo- tives for registries of patients with DSD gist recalled the care model of family on an international scale, such as the planning centres in the seventies as I- DSD Registry. This registry provides "friendly centres, compared with the hospitals which were more aggres- taboos in society and about whether or sive". They were places that were easy not sexual therapy is needed. to access where people were helped to overcome their fears or where women To carry out this study we followed the were empowered by their sexuality. The routes taken by people diagnosed with professional offered a whole host of intersex variations/DSD in their pur- ideas about how the system could be suit of biopsychosocial healthcare. We integrated, if it was organised by geo- asked them about the pathways that graphical areas or territories, with a had provided them with answers, solu- team per area, and about how the team tions and relief. Health professionals could be structured. that work in biomedicine featured in these pathways, but on many occasions Psych2.Hosp1 proposes the creation these routes go beyond the guided bio- of "road maps" that list the needs medical care which is public and free 51 identified for each condition, as well of charge. This is about professionals as the material and human resources that, according to some interviewees, Area of Citizen Rights, Participation and we have available: ranging, on the one have offered them a more devoted Transparency hand, from attending to everything and personal level of care, more time An analysis of the different that is anatomical, with an education- and, above all, alternative options. We realities, positions and requirements of the al-psychological healthcare team that were able to get in touch with some of intersex / DSD population in Barcelona addresses issues relating to attention these professionals. There are some deficits or writing problems (in relation that agree on the need for MDTs, but to KS), to educating families who have composed of more professionals than an intersex/DSD child. In this respect, recommended by the Consensus, or of it is a widespread demand for these different types of experts with diverse people to be taken care of without los- philosophies and ways of understanding sight of their needs at specific ages ing healthcare. Gin1 spoke about the or stages, the right timing. In cases of need to personalise care, especially in KS, information must be provided dur- relation to gynaecology, which is the ing the school-age years —to inform “only gender medicine”, and claimed the family about the extensive help that, at the moment, “medicine is not available to confront phantoms, such serving the needs off women, rather, as homosexuality—: to educate them it is serving itself”. The gynaecologist about sexual identity, infertility and proposed the creation of a multidisci- starting hormone treatment or issues plinary space as a solution, which has related to body image, for example, room for professionals in psychology, with a view to meeting sexual part- sexology, physiotherapy (e.g. for the ners or being nude at the gym. In TS pelvic floor), experts in body aware- cases, M-Turner2 requested for these ness, genetics and gynaecology. stages to be covered in medical care —check-ups for height, weight, bones, Rehabilitation and sexology are other diet, vision problems, school perfor- recurring requests. In the case of mance, etc.— in accordance with the women who require extirpation surgery emotional and psychological needs of or clitoral reduction (predominantly each age group —”from children and those with CAH and PAIS), dissatisfac- adolescents to adults, to explain, for tion and doubts have been expressed example, the effects on libido, delayed about the pleasure that they are able sexual development, vaginal dryness, to feel, or about not being able to feel inability to orgasm, etc.”— with infor- pleasure at all, etc. H-inter recalled mation that breaks away from sexual the case of a girl with CAH who had undergone clitoral extirpation and was needs because it’s about our intima- requesting help. The expert ended up cy. “I have only ever been treated in a putting the girl in contact with a sexol- medical context”, and something in- ogist that worked with the pelvic floor, timate cannot only be treated in the who said: “Look, there are ways to reha- medical sector. I have a series of de- bilitate in these cases. That means, ficiencies and, evidently, we need a with exercise, hard work, it’s possible sexologist speaker at this conference, to recover from the loss of feeling, you and speakers from other disciplines may not be able to reach a full orgasm, as well, because we have deficiencies but it is possible to make sexual rela- that they haven’t resolved for us, that tions less painful, don’t you think?”. we haven’t been able to resolve, because there hasn’t been any correla- The inability to centralise care within tion between what is stipulated med- the conventional biomedical care sys- ically, academically, what is written... 52 tems is compounded by the complexity and the suffering. This is the precise Area of Citizen Rights, of coordinating external profession- reason why it has been categorised Participation and Transparency als. Some interviewees explained that as something which it goes far be-

An analysis of the different every hospital and every professional yond. And from here comes the dis- realities, positions and has their own patients and they are crimination. Maybe I am wrong but, I requirements of the intersex / DSD population very reluctant to give up direct respon- understand that this doctor gets de- in Barcelona sibility for them.. In this sense, the cre- fensive, that’s normal. So, what can ation of a work network was proposed we do? Raise awareness and visibility, as a possible solution. This network get people involved, I find it extremely would be coordinated by these pro- difficult but we have to do it. I know fessionals and hospitals, “so that they that we have to do it. And they have don’t have to lose patients”. However, to jump through hoops and carry out M-Grap1 pointed out the resistance training and swallow clinical guide- from the hospital doctors to incorpo- lines, or whatever. But, somehow, it rate external professionals within the will happen. Because we can’t always MDT, and at the same time, the need be holding conferences, we have to go for them to be incorporated because beyond that. “medicine doesn’t have all of the answers to an issue which is so closely Similarly, it is reported that there was related to intimacy”: “You find yourself resistance to creating the network of dealing with a very intimate topic, but coordinated action outside the scope one that is only being treated from a of the hospital and away from medical medical perspective, which is not inti- care. Some of the interviewees believe mate at all”. Using a particular anec- that medical professionals should dote about a moment of disagreement be in this network group, but that it with another medical professional, should not be them that coordinate the Grap1 exemplified the paradox: management of intersex in the field of psychosocial care: “I believe that When you want to make them see it would be important for the medical that, of course, it’s normal for this community to participate, because, at doctor to get a little..., he’s cautious the end of the day, medical personnel about having a sexologist in the hos- are the ones who are in contact with pital, because he’s never been taught the family members. I won’t be at the that we have needs that go beyond neonatal unit”. medical needs. More precisely, we have needs that go beyond medical We must not forget the traditional dis- a guide, an advisor or a partner, and cipline of medicine, which has trained patients into responsible subjects who doctors to have an extensive range of make informed decisions. Ma-Grapsia technical knowledge, but which has expressed the same sentiments: “Doc- neglected the psychosocial aspects tors need to accept their role as part- that enable care to be free from prej- ners, rather than mangers”. udice, such as communication skills, bioethics or expertise in cultural and The shift towards a patient-centred sexual diversity. The majority of peo- model, that manages and involves ple asked did not venture to propose or them in their own self-care and health, devise a viable method for assistance is unstoppable. Some of the respond- or care. Even though it is generally per- ents reject the current concept of the ceived that the City Council and other MDT because expert patients are una- social authorities occupy an unclear ble to form part of these care units. 53 position from which they do not really M-Grap3 explained how, in other coun- know how to help, some people believe tries, such as the United Kingdom, Area of Citizen Rights, Participation and that this is the ideal position in terms of support groups are part of these MTDs. Transparency proximity, easily located and visible, and This rejection is justified using the An analysis of the different free from the labyrinth of the Generali- explanation that it is an issue of med- realities, positions and requirements of the tat (regional government of Catalonia). ical confidentiality, but this secrecy intersex / DSD population in Barcelona It is also portrayed as a position from only makes sense in a hospital envi- which holistic care can be coordinated ronment, it shouldn’t be an exclusive and secured, which focuses more on the place from which biopsychosocial care emotional and psychosocial aspects. In is implemented. Another one of the this vein, the integration of these ethical proposals encouraged the creation of and social elements into medical study patient groups from a social institution plans has also been proposed. that can participate in the MDT.

Some of the interviewees tend to con- Perhaps this group could be included sider another care model, based on in all hospitals where the endocrinol- “intervention-assistance” or “medi- ogists..., well, it’s about there being a cation”, which is less centralised and protocol for endocrinologists to have separate from health centres. Some more doors than just the surgeon’s to of the testimonies included the exam- knock at. They can’t even call upon ple of Trànsit (promoting healthcare the psychologist: the route is endo- for transgender people), a unit which crinologist-surgeon and gynaecol- has disconnected itself from the tra- ogist, at most. Well, at least in our ditional gender identity development case. And perhaps if they form part units (GIDU), which refuses psychiat- of that, they can create multidisci- ric pathologisation, and which offers plinary groups that we can be in too psychological help or support, advice (M-Grap1). about treatment, the provision and prescription of medication, contact with associations or groups and with surgeons in the event that surgery is requested. LGTBI1 affirmed that “the current model is risky and must shift towards this model of intervention-assistance or medication” which trans- forms the doctor or professional into Patients’ participation in health is pre- They also proposed the creation of sented as a complex scenario in terms their own care units; as an intermedi- of the doctor-patient relationship; ate stage, a connection between hospital, social and family life. Traditionally, M-Grap3: This is the issue of the doc- the places designed for this purpose tor-patient relationship: that doctors were the health centres. According to have risen above because people Gin.Sex1, the health services portfolio have needed to transfer this respon- must guarantee the existence of this sibility to them. It’s complicated, unit in certain healthcare departments sometimes. or to attend to a particular portion of the population. This unit would be H-Hipos: Yes, because they taught us comprised of professionals in health- that this is the path. care, psychological or psychotherapeu- tic care, sexology and social care (all 54 Ma-Grapsia: Yes, both of these situ- of which employ gender perspective, Area of Citizen Rights, ations exist. Doctors who don’t want and adequate and modern knowledge Participation and Transparency people, the patients, to be respon- about the specifics of each condition).

An analysis of the different sible for their own lives, and people It is also conceived as an intersex/DSD realities, positions and who don’t want this responsibility. training and research centre, which requirements of the intersex / DSD population For this reason, [doctors say] if this could become a specialised training in Barcelona person doesn’t understand what I tell centre for professionals in the city and them, why should they go and see an- a centre of reference for the rest of other [doctor]? (Discussion group). Catalonia, and even Spain. In this way, it would also serve as an assessment Cap.EndPed.Hosp1 explained that the and monitoring centre for all of the pro- current intervention focused care model fessionals that provide medical care to is shifting to a more personalised model this population. that respects the opinions, references and information of parents and individuals with DSD. “Nowadays, parents have a considerable amount of information and the care must be personalised, in accordance with the information they have. If parents prefer to preserve the physical integrity of their children, this decision must be respected and supported. Fifteen years from now, this will have completely changed”.

Awareness and integration from a psychosocial perspective

Psychosocial care in the management P-Grap also exposed issues that are of intersex/DSD is perceived by those not covered by medical wisdom. GrAp- diagnosed and their parents, as a mere SIA gave an account of the history of label which is politically correct, but their association and of how each year, which does not exist in practice. Psy- during the medical gatherings that they chological care has frequently been used to organise, initially they would listed as in short supply and is com- simply listen passively to the doctors. monly requested by all social players. However, little by little, they started to However, social care, which is more participate more, delving into psycho- closely related with stigma, taboo, logical and social aspects, to defend isolation, guilt, raising visibility and the fact that AIS was, at that time, a awareness, family issues, sexuality, “biopsychosocial syndrome. Therefore, sexual diversity, etc., remains forgotten we started addressing the secrecy, and is even made to disappear behind fears, solitude, isolation, the need to 55 other needs, which are usually medical. reduce and eliminate stigma, taboo, H-Hipos believes that it is a mistake the acceptance of differences, sexual- Area of Citizen Rights, Participation and that doctors are currently held up as ity, family conflict, etc.”. Transparency experts in the psychosocial issues that An analysis of the different adversely affect intersex people, “as if Cap.CirPed.Hosp4 reflects on the issue realities, positions and requirements of the medical and surgical knowledge would of isolation and blame, and refers to intersex / DSD population in Barcelona cross over into any social issues”. In failed attempts by professionals to this respect, many surgical procedures promote meetings between patients which aim to help people are consid- and parents, as well as the need to ered inadequate or unnecessary, “when create an organised care network: the core problem, which is emotional or “They are people who, until now, have affective, remains unresolved”. wanted to remain isolated. Because a kind of primal instinct sticks with H-Hipos: Years ago I met a woman them, guilt-related, doesn’t it? The sim- who said that her ex-fiancé commit- ple question about whether it’s a boy ted suicide partly because of that, be- or a girl... I remember a case in which cause they had operated on him twice the young girl should be a —girl— but and he was a broken man. And one the mother still couldn’t accept it. They day, he threw himself under a train. were always asking for help, but, of The girl explained it like that. This is course, moving about here... There was when I understood the importance of no organised network, which would saying that surgical reconstruction be ideal, but we have tried to improve has a very important element to it, the situation on this level”. However, which is that it is psychological too. in the hospitals of reference that we Move the urethra to the tip, for what have spoken with, initiatives to organ- reason? / It’s more important for the ise psychological support haven’t been person to be able to accept who they successful and experts talk about the are. That they are complete without difficulties encountered by parents and surgery. patients in organising psychological support or therapy groups. M-Grap3: Surgery is a tool. It can be positive or negative. If you want to They have tried, but any time that have it, then do it. But it’s always up the families have met —one could to you to decide, isn’t it? (Discussion be from Murcia and the other from group). Andalucia—, and on the occasions that they’ve been together, they haven’t spoken to each other. They don’t at Hospital Vall d’Hebron (individ- want them to know anything. Be- ual or group therapy for parents of KS cause that's like everything. By de- patients) and the initiative organised nying the evidence, you are creating a between FEDER and the Department series of phantoms. Firstly, they come of Social Psychology at the Univer- from many different places. Second- sity of Barcelona. Here, the students’ ly, they cannot commute to this kind training consists of overseeing groups of degree. And thirdly, particularly of patients and parents with the same in the paediatric age group, it’s the condition or different conditions with parents you have to deal with. The similar characteristics (face-to-face or parents don’t want that. / After that, via the Internet). Other MAGs created I would say (but I can’t prove it) that by the rare diseases CIBER (CIBERER) when they have been corrected, sur- have been mentioned, which are avail- gically, especially the most common able online and are overseen by psy- 56 operation, which is hyperplasia, they chologists. Area of Citizen Rights, can keep lots of things inside, can’t Participation and Transparency they? They see that the child has gen- AFAPAC is one of the associations that,

An analysis of the different itals... Look, the best “compliment” despite its small size and the fact that realities, positions and I received was from a mother from it only deals with conditions related to requirements of the intersex / DSD population outside of Spain, when they operat- growth in the form of intersex in Turner in Barcelona ed on the girl, who was already three syndrome, insists on the need to work or four years old. She said: “She has on the social integration of these peo- turned out just like her big sister”. In ple. Its lines of action are based on other words, there was nothing else the actions of citizens, such as a tour- wrong, she had a hypertrophic clito- ing exhibition which raises awareness ris and some other extra tissue. When about why someone with these condi- they see that at school... There’s an- tions cannot become a lawyer, about other type of pathology which can the failure of schools or issues in the pose more problems: when a girl, like workplace. Furthermore, they produce the ones who come here, eight or ten materials for professionals which out- years old, have an enlarged clitoris line pathological conditions related to and have spent six months to a year growth and design labour market inclu- getting changed without any of her sion plans. classmates seeing it. That is a problem, isn’t it? But they are isolated The model proposed by Psych1 didn’t issues and they come from different pinpoint any particular system, but it places. We’ve thought about creat- assists with access: the first visit to a ing psychological groups for differ- psychosocial care centre, which offers ent levels, but it wasn’t viable (Cap. information, resources and commu- CirPed.Hosp4). nity work (family, school, intercultural support, etc.), where group or physi- The truth is that, until now, and accord- cal therapy can be organised, all with ing to the interviewees, psychological a view to depathologising intersex care and emotional support is always conditions. This psychologist insisted covered in part by support groups or on the need to oust “medical issues” patient associations (face-to-face or from the centre, because, “by follow- via WhatsApp chats), with independ- ing the same steps as the LGTB move- ent or private psychologists. The only ment, doctors become less interested free psychological care mentioned is the more that people empower them- offered by the Unit of Rare Diseases selves”. The professional considered that medical care is and has been Parents end up with extensive med- standardised, which makes it neces- ical information, but nothing on an sary to address this issue taking into emotional scale about how to cope, account the diversity of experiences they don’t even know what they have and expectations of life. Accordingly, to accept. In cases of Klinefelter syn- she proposed drawing up best prac- drome, many of the initial messages tice recommendations based on the are based on data from psychological theoretical framework that evaluates, studies, on IQ (intelligence quotients), for example, the results of research where the only information they re- or studies about the risk of gonadal ceive says that their child is border- malignancy, the scales used to assess line and they believe it: “You think behaviour and quality of life, and that what you think, in that moment they highlight their methodological biases stop seeing the potential that the and/or implicit heterosexism. child has. I’m going to think that my 57 child is borderline”. Neither the hospitals nor the MDTs Area of Citizen Rights, Participation and seem to be able to fulfil all of the The truth is that in the few studies that Transparency needs of the patients and relatives. In exist for this population in Spain, such An analysis of the different fact, many of the routes taken by peo- as Sameklin about mental health in realities, positions and requirements of the viii ple with DSD are pursued outside of men with KS , their results associate intersex / DSD population the public health sector, and even out- a chromosome with a series of person- in Barcelona side of allopathic and biomedicine. A ality features and behaviour, which are significant portion of the therapies and not explained in relation to the con- care pathways pursued are occupied text, to the discrimination that they by alternative therapies. Currently, may have suffered or the bullying at new professionals and spaces are in school. As for KS, Med.Farm1 takes the demand: group therapies, Gestalt psy- view that the only solutions given — chology, mindfulness, family grouping, also psychosocially— are all resolved yoga, pelvic floor therapy and Tantra, using one molecule, testosterone. “All are some of the therapies sought and of the psychosocial needs are resolved mentioned in the interviews because through an injection of testosterone. they have proven useful and provided Currently, the three-monthly Rean- solutions. As M-Grap2 said, “belly drón treatment is not available on the dancing has helped me to come to market. This injection causes patients terms with my body”. Various tech- to feel super-powerful at the time, but niques are highlighted; for self-aware- later the downer is very obvious”. This ness, self-acceptance, improving same professional called for less drugs self-esteem, problem solving meth- and a type of care that “prescribes ods, such as the Ho’oponopono; as well social solutions”. as other therapies that enable them to explore and get closer to emotional Gin1 insisted not only on the need to pain, such as the Metamorphic Tech- rethink and consider that we are not nique, etc. offering the proper psychosocial care, but also that we should offer a level of As for Ma-ascatsk, given that the par- care that transcends different gener- ents’ main problem is accepting what ations. The MDT does not provide this has happened to their children, she psychological and psychosocial care considers that medical information is in the majority of centres. Neither is inadequate: biopsychosocial health provided for in the health model of the care sector, whether in hospitals, support or treat- involved. “That should be pursued in ment networks. These are purely bio- healthcare”. Indeed, we observed how medical, with medical professionals these stories normally start by describ- that work on an ad hoc basis and only ing the lack or complete absence of sporadically with clinical psychologists. information and secrecy in the family. Above all, we repeatedly hear about the There is a noticeable need to raise information provided in the first med- awareness and provide education ical consultations being full of gender about the psychosocial and socio- stereotypes, and sexist and patholo- cultural dimension. As explained by gising language which appears to have LGTBI1, since a large proportion of an impact on patients, their self-im- problems are related to a cultural age and self-esteem. Over time, after model that rejects difference and is prolonged treatment journeys, many heterosexist, a significant number of people go to experts in psychology or 58 the procedures should be addressed sexology or other therapists or treat- Area of Citizen Rights, in that direction. In this respect, he ment types that are not included under Participation and Transparency affirmed that many of the personal the umbrella of free healthcare pro-

An analysis of the different problems that they face correspond to cedures. This search for solutions and realities, positions and those of other transsexual people. empowerment usually takes decades, requirements of the intersex / DSD population if not an entire lifetime. Shortening this in Barcelona In Psych2.Hosp1’s opinion, once any suffering would mean expanding the possible or potential health problems care model. are under control, in the event that there are any, the main requests con- We can see how a team of experts is cern issues related to identity, to “los- forming, in addition to a healthcare ing one’s identity”, to the stress and model which is concerned not only with emotional trauma of past events, and health issues, but also with psychoso- to parents. He considers that an essen- cial and sociocultural issues; one that tial task resides within the domestic is moving out of the hospital context context, in the management of guilt — because it is including the people with especially in genetic conditions— and intersex variations/DSD themselves the pressure that is observed in this and their families among their experts. area. As the psychologist explained, In addition to all of the specialisms in other cases, like KS, poor perfor- already mentioned, in this model there mance at school can emerge, so there is also room for nursing (more per- is a need to promote supplementary sonalised training for health-disease- classes and mentoring at school, and care), social work, social sciences and also psychomotor problems requiring humanities, and experts in gender. rehabilitation, etc. Lawyers are also considered as essential figures (especially in streamlin- As for Gin.Sex.1, the key is to short- ing the referrals procedures, changing ening the period of suffering, shame, doctors, easy access to medication, anguish and loneliness for everyone claims, etc.)

Training and education among professionals

Within the list of proposals, training changed over the years and under- for health professionals appeared as stood the reason for this. For exam- a priority. Proper training should cover ple, not long ago, when I was speaking all the principles of respect for inti- with [name of doctor] they said to me: macy and diversity (physical/sexual), “Yes sir, yes, it’s a girl the same age the accomplishment of true informed as you”, and I thought: “And you didn’t consent (in which all options are pro- even tell me anything, it didn’t even vided) and guidelines that explain how occur to you”. “Yes, from the same and where to refer patients when you time, the same age”. It didn’t even oc- are not experienced in the subject, and cur to him, and I think that now, after to recommend support groups after X number of years, it would. a diagnosis has been made. Clearly, before the needs that we have already H-Hipos: I did ask if they knew of any mentioned, training and updates are other men with the same condition as 59 required in medical knowledge of me and they told me that, because of DSD, using the most recent research medical confidentiality, the couldn’t Area of Citizen Rights, Participation and conducted by leading groups on a reveal any information. Because of Transparency

European and international scale. In medical confidentiality. An analysis of the different organisations like GrApSIA, daily con- realities, positions and requirements of the tact with medical teams, the empow- M-Grap1: Of course, you don’t need to intersex / DSD population in Barcelona erment of the organisation, together give me their contact details, but I’ll with the confidence built up over the give you mine for you to give to them. years, has resulted in more authentic In the end... I think that the same cul- and straightforward dialogue between ture is ingrained in them, they are like all parties. These women feel like they car mechanics; they fix things. For have managed to educate and raise intimate and emotional things, they awareness among medical profession- don’t know what you’re talking about. als with whom they collaborate regu- Some of them do, they are different. larly, about issues which they consider Just like fixing cars, they fix bodies. to be crucial. You go there and say, just like having a broken wheel, that you have a Ma-Grapsia: This is the education we broken child. “This is how we fix the should be giving to doctors. By start- wheel. Relax, the urethra is the same. ing every conference with a testimony. We will replace the urethra and that’s it” (Discussion group). M-Grapsia3: I think that’s important. That is what generates change. With- Normally, it’s the more active and out that, these doctors go to medical involved adults in the support groups conferences, with a PowerPoint about that believe that an important part of blood and guts, but it doesn’t serve training should be carried out by expert any purpose (I don’t see anything patients: good about a surgeon’s PowerPoint). We haven’t achieved much, almost Medical training is basic, isn’t it? I’m nothing. We’ve managed to gradually not referring to the fact that they educate our own general practition- have to take a course every year... ers. But the rest don’t understand; Or do they. I don't know. But, at the those that have always been there, I very least, awareness. That can be think that, despite having a certain achieved if they take us in account. level of awareness —which is why In other words, when we talk about they have been with us—, they have multidisciplinary groups, we are saying that there’s a series of medical healthcare, as for those in education, disciplines that can work together to social services justice, sport, commu- help the patient. But the patient, per- nication, etc. and for professionals to haps, should also be part of that net- be obliged to report discrimination or work. And that’s the end of it: training violence for motives related with sex/ for doctors should happen here, so gender diversity. Gin.Sex1 considers that they also listen to our voices. In that training courses in sexual diver- the end, you only learn through ex- sity awareness need to be organised perience. A little, I think. And up until as a matter of urgency for medical pro- now, they have only learnt from books fessionals, and proper attention needs (M-Grap3). to be paid to sexual diversity in primary healthcare. Along the same lines, A potential strategy suggested to M-Grap3 recommended using audio- implement this training, is “therapeu- visual material in this training. Namely, 60 tic role playing” workshops, where pro- she spoke about Yes, we fuck, a doc- Area of Citizen Rights, fessionals can put themselves in the umentary which sheds light on other Participation and Transparency shoes of the parents and the patients. non-normative sexualities that do not

An analysis of the different conform to the expected standards, realities, positions and The majority of individuals with DSD from people with functional diversity. requirements of the intersex / DSD population interviewed pointed out that the med- in Barcelona ical information they received during It has also been stressed that the their care pathway was scarce and training must be ongoing, so that awash with gender stereotypes and professionals can stay abreast and heavily burdened by stigma. Sensitive up-to-date which the latest research, care, free from heteronormative prej- networks and/or protocols: udice is called for in the reproductive and sexual sphere. Also evident, is a Start developing and creating ma- rising need for awareness concerning terials that are extensive, informa- the sociocultural dimension of inter- tive and comprehensive enough for sex variations, to reduce the stigma professionals to have at hand when placed on this group. It is not possible these situations arises; train other to improve health and social care for professionals and ensure that this this community unless we understand [promotion] nurtures our abilities and the sexist, homophobic, transphobic improves the tools we have to car- and heterocentric sociocultural mech- ry out a good job with LGTBI clients anisms that control life, and until the and patients, if we don’t do this, there professionals who take care of the isn’t anything available, and you real- biopsychosocial health of this pop- ise this when you start working in the ulation, who educate and inform the field. You think: “What they taught me general public about these issues, at university was good”, but what we are aware of the gender stereotypes say now about doctors is that, your and bias that pervade medical recom- training only takes you so far, and mendations and procedures. With this when a situation like this arises, you in mind, one of the pleas made to the think: “what am I going to do? If I am public Administration was to guaran- honest as a professional, and I rec- tee adequate training in sex/gender ognise that I don’t have all the tools, diversity, as much for professionals in what am I going to do?” (H-inter).

Bureaucracy and administrative procedures

Cap.Hosp1 emphasised the problems up, in addition to it being a cost-free that parents come up against during process. To this, she also added that administrative procedures regarding the Administration shows very little Civil registration, legal terminology respect when managing gender reas- and systems, when a gender change signment in their documents: “It’s the is required (because it’s considered vox populi. In the family book, the part that there was an assignment “error” about birth is crossed out. That could at birth). Along the same lines, Ma-Nr5 be a problem in the future, if you need explained the difficulties that her and to show your book to the Police or to her partner encountered when they had participate in competitive sport”. The to change the gender of their daughter mother recounts the need to create a at the Civil Registry office when she protocol to respond to the birth of peo- was still a baby. In addition to coping ple with atypical genitals: “Most impor- with the social pressure of explaining tantly, in addition to training, it’s having 61 to the family and everyone around that the protocol to respond to this type of he was now a girl, having to wait a year birth. For me, it should be obligatory, in Area of Citizen Rights, Participation and for a judgement, visiting a forensic doc- response to a case of genital ambiguity, Transparency tor, and seeing how slowly the process to carry out the relevant tests before An analysis of the different was unfolding, they decided to hire a deciding on the gender. That would realities, positions and requirements of the lawyer to speed up the simple change have saved me from a lot of suffering intersex / DSD population requested, rather than a change of gen- and stress. It would have been use- in Barcelona der, an assignment error. Among all of ful if they had given me actual infor- the changes in documentation, the one mation, not from the Internet. In other that took the longest was the change of words, the procedure should include gender on the social security medical giving information about intersex con- card, something that resulted in a lot ditions to parents, explanatory guides, of confusion at medical centres, where like those produced by DSDfamilies in the name of a boy would be called out, the United Kingdom, with the names and the parents had to keep giving of some associations. With a view to explanations. The mother explained getting rid of any administrative pro- that, although they were able to pay cedures, a proposal has also been put the 900 euros in lawyer fees, many forward to promote legislative initia- families are not in this position. This tives that recognise the right to having is the reason why she demands that no gender recorded in the civil register.. bureaucracy is simplified and speeded

Participation in associations

Patient associations satisfy the basic to me, women of all ages and parents needs of people with DSD and their with daughters of all ages too. They all families: combating isolation and the shared their experiences with me and fear of stigma, promoting recognition understood me. I saw women laughing, and improving self-esteem, offering happy, living a life like any other per- information and expert knowledge son. And seeing them was like seeing through experience. Until not so long my daughter as an adult, seeing that ago, they were discouraged by numer- she could have a normal and happy ous medical professionals, however life, just like any other person, where they are now hailed as an indispensa- her differences would not matter. ble source of help and support. In fact, That brought me peace and a sense although some medical professionals of hope that I hadn’t felt until then. As try to encourage their patients with I got to know them better, I was able DSD to go to meetings held by the most to ask them thousands of questions 62 active groups, like GrApSIA, they believe that the doctors hadn’t been able to Area of Citizen Rights, that the initiative must by taken by the answer and I requested a lot of ad- Participation and Transparency patient, and that professionals and vice from parents about how to handle

An analysis of the different institutions should only help, support the various situations that were aris- realities, positions and and attempt to foster these activities. ing. That made a great difference to requirements of the intersex / DSD population how I viewed my daughter’s condition. in Barcelona The associations that we spoke with Speaking to one of the women with were created through the initiative AIS, I asked her what she would have of adults with DSD, or mothers and wanted her parents to do and what fathers. In the most active associations, they didn’t do and she said: “Don’t give such as GrApSIA, both adults and par- it so much importance”. That really ents talk about what it was like before stuck in my mind and I hope to be able and after discovering the association: to do that. It doesn’t seem so terrible any more, not like it seemed before All the while, I kept on searching the meeting the girls from GrApSIA. Now Internet until I found GrApSIA, that it just seems like a different condition was the start of me having a before and that’s it. She’s two now, and she and an after. At the time of gender re- drives us crazy, with love and worry! I assignment, with a million questions, have a view of intersex conditions that the reality of meeting the parents of is completely different from the terri- girls with AIS and, above all, adults ble thing that it seemed at the begin- who were leading completely nor- ning. What we don’t know scares us. mal lives made such a big difference, But, she will have a lot of things in her I don’t know how to put it into words. favour when she grows up, to be able The information that they gave me to accept herself and her condition. helped me to know what questions to She will have GrApSIA, where she will ask the doctors. Mostly, they gave me be able to meet women like her and strength to be able to go through with girls of her age to share experienc- the gender reassignment. It seemed es and doubts. And she will have the like an impossible task to explain to all acceptance of her parents and sister, of the parents at my other daughter’s who will support her in any decision school that our child who was, until she decides to make about her body then a boy, would become a girl. // Why (Ma-Nr5). did GrApSIA signify a before and after for me? In the meeting, I met women with AIS who explained the situation Often, the systematic pursuit of sup- The associations that were studied sus- port associations is related to the lack tain themselves fundamentally through of positive information, as well as our the voluntary work of their members significant needs, which are not cov- and are self-financed by membership ered by the healthcare system. fees and limited funds from health centres, programmes and foundations. The I found the association because I was same problem is seen in FECAMM (the totally lost and I didn’t know anything. Catalan Federation for Rare Diseases) // I’m lucky, but there are girls for and FEDER (the Spanish Federation for whom the syndrome is more noticea- Rare Diseases), both of which are key ble than mine. I don’t know if that will institutions providing resources and change as I get older. Then, you feel support to these associations. Prob- quite uncertain because, obviously, lems related to the self-governance of nobody can help you..., at least, not the Catalan Federation, which is com- 63 here in Catalonia. Of course, I would prised of twenty different associations, like to know more about the syn- were highlighted by P-FCMPF in that, Area of Citizen Rights, Participation and drome, about what I have (M-Turner1). although they receive some funds from Transparency

the Department of Health, Barcelona An analysis of the different The vast majority of these associations City Council, the regional government realities, positions and requirements of the hold annual meetings with medical pro- and Social Welfare, these funds do not intersex / DSD population in Barcelona fessionals with whom they exchange cover all of the needs that are not guar- information, raise doubts and issues, anteed by the public Administration for and request funding and collaboration. the individuals concerned. Among the Nowadays, many of these doubts are many procedures they offer, they help resolved through other channels, like to establish partnership agreements online forums, social networks or appli- with companies to handle, for example, cations, such as WhatsApp. Associa- legal and judicial consultations (judge- tions like Ascatsk, Alejandra Grandes, ments, disabilities, etc.), social care a.m.a.r., the Spanish Association of and physiotherapy services, assisting CAH, are very active on Whatsapp people in their homes for a low fee. which is, in fact, their most immedi- There is a high number of needs and ate and effective method of providing requests. For example, the following support through which they exchange request was made by the Catalan Asso- lots of information. H-Hipos remarked ciation of Klinefelter Syndrome: that, while the incidence of hypospadias is very high and boys from Barce- As an association, we need a place lona have made many attempts to find where we can hold meetings and as- each other, even through a forum, it semblies. It doesn’t need to be per- hasn’t been successful: “There is only manent, or big, or have any specif- a Facebook group for hypospadias. It's ic audiovisual facilities, just a room very interesting. There are many moth- where we can meet with ease, on a ers in there. There is a great demand on couple of Saturday afternoons each mothers. The mothers don’t know what year. One medium-term objective that to do. They don’t know if they’ll need to we would like to achieve is to hold an operate or when”. outreach session with one or more health professionals, who can explain and quell doubts raised by affected individuals and their relatives, concerning the level of knowledge about of DSD), reiterates how difficult it is this syndrome. In this respect, we’re for its member volunteers to meet this seeking assistance to find a place demand. For this reason, they men- that we can use to achieve this and tioned that it would be of great help to perhaps financial contributions to have someone to fulfil the role of sec- help cover the costs [Email sent by retary to respond to emails, request the Ascatsk association] grants, organise awareness events, campaigns and workshops. P-Turner2 reinforced the issue of funding, which is needed, for example, to Throughout this study, and precisely be able to make more subsidies or because of it, our interviewees have grants available for rehabilitation, to become aware of other intersex var- create and maintain online informa- iations/DSD, while making contact tion or to organise open days and par- with people from other associations. 64 ticipative activities. But, above all, he Through meeting each other, they Area of Citizen Rights, wanted to raise awareness of the truly have discovered shared problems and Participation and Transparency fundamental support function that needs. This has sown doubt about the

An analysis of the different associations provide to patients, “with best way for associations to organise realities, positions and goodwill they can do so much” // “They themselves in order to be more effec- requirements of the intersex / DSD population understand our situation”. In general, tive. Some medical professionals think in Barcelona financial support and/or resources are that it would be a positive thing to cre- required to "design visibility and nor- ate a bigger association which covers malisation campaigns", to design pro- all DSD. D-FEDER gave the example of jects, for example, for labour market an association that caters for different inclusion —to open effective channels pathological conditions with a shared with employment departments— aid, common problem: the Spanish Puden- grants or subsidies for jobs within dal Neuralgia Association. This asso- the association and for it to be able ciation welcomes different conditions to manage itself, to open doors to which share a symptom: the presence schools or to create networks and links of pain when sitting, during sexual rela- between organisations. GrApSIA, which tions, and when carrying out physio- has become an accredited intersex logical needs. This example serves as a association both inside and outside of pretext for some of the interviewees to Spain (due to the media, professional think about the possibilities for inter- interest in intersex people and as the sex/DSD associations. recipient of individuals with all types

Educating in diversity. The dualism of dualities

The majority of interviewees agree that employing education and awareness as a means of rooting out discrimination directed at people with intersex variations or DSD, is the same as the strategy applied by trans, lesbian and gay movements. It is about educating people about diversity, breaking away from the idea that the body, gender, identity and sexuality can be classified according to the ideal binary model of man/woman, masculine/feminine. It consists of making people aware of the idea of continuity and the idea that specific outward physical characteristics do not necessarily coincide with the precise identity of a person, nor their actual desire or sexuality. For example, both socially and medically, XY chromosomes are attributed to having testes, a penis, and a scrotum of a specific size and shape, an outward masculine appearance, male behaviour, the identity of a man and a heterosexual desire for women. The same theory is applied to people with XX chromosomes; ovaries, uterus, vagina, female genitalia, the identity of a woman and a heterosexual desire for men. This education would consist of breaking down this idea of gender coher- 65 ence, and in some cases, even tolerating fluidity, non-dichotomous and “middle of the road” options. Gender education is a key mechanism in dismantling this idea of Area of Citizen Rights, Participation and coherence, in order to accept and learn about new ways of experiencing and viewing Transparency the body, identity and desire. An analysis of the different realities, positions and requirements of the I think it is very smart for everyone the spectrum, or even, that the bina- intersex / DSD population to question their gender stereotypes. ry utopia doesn’t exist at all. We are in Barcelona Throughout life we’ve had this in- all intermediary, and that is what stilled in us, sexuality, the security we need to focus on. Our assess- we feel when we have an emotion- ment criteria should be based on our al relationship with another person. self-esteem. // I didn’t approach this Everything. But that’s why I wouldn’t from a strict LGTBI point of view, I ap- just approach it from the LGTBI per- proached it from the view that our so- spective, but rather the whole of society as a whole needs to question all ciety in general. I work with a team of the gender stereotypes. If we see of psychologists, sexologists, and on it like the LGTBI do, great, because a daily basis we see it in non-LGTBI clearly, a transsexual person is the populations, the concept of gender first to question it, because life im- stereotypes in the cissexual popu- poses these stereotypes on us from lation. How my genitals should look, the word go. But there are people who how I should behave, that something neither identify as trans, nor simply is masculine, that that’s a boy or a as homosexual, who also question girl. We have to question all of that. gender stereotypes every day. And // It’s a task that has more to do with it’s good that they do that, because how our society as a whole only rec- stereotypes do us a lot of harm: guys ognises stereotypes corresponding have to be aggressive, “I don’t want to to two genders, and to realise that, at fight with anyone”, or women have to best, we could speak of a third option, be seductive and charming, but why? somewhere between the two ends of (H-inter). All of that must be integrated into education, in schools, colleges, in editorials, in continuous teacher training centres. P-Grap tells of how school is a reflection of society. Books continue to polarise biology in the face of history and there’s no room for diversity. This is why they propose ways of achieving it: “educating through positive values and appreciating and celebrating our differences”; running awareness campaigns with workshops, with students in schools, via television adverts, etc. Regard- ing the teaching material that could be used, different initiatives have been suggested, although the use of audiovisual material is considered particularly useful. During the interviews, the following audiovisual documentaries were mentioned; Me, my sex and I, XXY, Orchids, My Intersex Adventure, What it’s like to be intersex, Is anatomy destiny? (TED Talk by Alice Dreger) and Nobody is shameful:

In the video Nobody is shameful,, various intersex people talk for around 66 three minutes. You can sense the dif- Area of Citizen Rights, ficult and strong emotions, though. Participation and Transparency It’s fine. But, it is what you say; speak

An analysis of the different in this way, with a happier tone. It is realities, positions and not necessary to minimise the neg- requirements of the intersex / DSD population ative effects, but I think it is impor- in Barcelona tant that when a person stands up for something, especially when com- municating something unknown, it’s better to leave a positive mark. After many years of not feeling normal, psychology, and later sexology, helped me to accept my body and to be satisfied with what I have, to talk more positively about it, and mostly, to not complain. Emotions need to be positive, because we’ve seen enough negativity (H-Hipos). The creation of positive information is called for, “because I had to wait twenty years to tell my friends about it. If you react with embarrassment, so will they...”, and “brave” initiatives are also valuable in breaking down stigma. “There is a person called Hiker Chiu who gives intersex hugs. He goes to universities and schools and talks about intersex in a very cool way. He’s on his own, but look, he has balls. I think it will open up the minds of a lot of people. He made his own activism” (H-Klinefelter). They also insist on the need to adapt cultural values and beliefs in order to change one’s own self-image and self-worth:

It is essential for assertiveness. So that, for me to value the fact that First there is the value of “me as I I’m homosexual, first I start from the am”, your concept of yourself. Then, context that I operate within, and, if “this is how my genitals are, how do they say that being gay is bad, I will I value that?” Later on, we arrive at believe that it is bad and I will inter- 67 the issue of self-esteem. There are nalise homophobia. If I consider that three levels: self-image, self-esteem having ambiguous genitalia is shame- Area of Citizen Rights, Participation and and assertiveness. What concept ful because that is what those around Transparency

do I have of myself and my genitals. me think, I will internalise that. So, if An analysis of the different My genitals are not, let’s say, stand- I regard my genitals as shameful, will realities, positions and requirements of the ard. I give them definition. In princi- I show them to anyone? Will I have intersex / DSD population ple, it’s a neutral definition, but they sexual relations? Will I be able to ex- in Barcelona become loaded with significance if pose my body? No. It’s unthinkable. I introduce an assessment criteria / What’s the first thing that needs to to define whether these genitals are be done? Change these assessment good, bad, or normal. And it’s always criteria with regard to the traits you a social criteria, because we take on are composed of. And with regard to board all of the information available; gender, what they are doing is very that is how social learning works. // interesting in this sense (H-inter). CHAPTER II INTERSEX IN THE FRAMEWORK OF EUROPEAN AND INTERNATIONAL HUMAN AND SEXUAL RIGHTS POLICIES

While the first phase in the interna- sented and also by applying personal tional activism of intersex commu- judgement —experiences, values and nities focused on transforming the beliefs—. The management of intersex medical approach to intersex condi- in the legal sector was settled upon for tions, and stood out for condemning the first time in the Supreme Court of the status quo of medical treatments, Colombia in 1995. and for trying to re-educate and establish alliances with medical staff, the Often, the struggles against discrimi- latest phase has forced these changes nation and prejudice suffered by inter- to be implemented from a legal per- sex people have been included on the spective, based on human, sexual and/ agendas of the LGTB community. In or patient-client rights. The legal field May 2014, the commissioner for human has created platforms from which to rights from the European Council, Mils monitor and regulate decisions made Muižnieks, published a paper A boy or a 69 by parents and doctors, to protect chil- girl or a person — intersex people lack dren in the decision-making process, to recognition in Europe, which outlines Area of Citizen Rights, Participation and report abuse and request comprehen- the changes made to human rights Transparency sive information or informed consent. which were secured by intersex peo- An analysis of the different These changes have opened the door to ple. The paper informed governments realities, positions and requirements of the some new experts: lawyers. and experts about the development of intersex / DSD population a human rights ethical framework. Alle- in Barcelona Decision making was transferred to gations made within the legal frame- courts, and lawyers and judges became work of human rights have been based external experts who started making on the following items: decisions based on the evidence pre- Non-consensual surgery: choice. The new law (Gender Identity, Gender Expression and Sex Character- “Corrective” surgery and treatments istics Act —GIGESC—) of Malta, which that aim to aesthetically “restore” the was recently approved in April 2015, is gender of babies are explicitly con- the first law anywhere in the world that demned. It is thought that these can prohibits the performance of surgical result in an irreversible gender assign- procedures on intersex people that ment and sterilisation, without con- are not a medical necessity; that is to sent from the individuals concerned. say, all cosmetic surgery in children They are also viewed as traumatic and that is the result of social expecta- humiliating procedures, rife with short tions imposed by the binary gender-sex and long-term complications, which model. Articles 14.1 and 14.2 of this can be physical and/or psychological. new law states: In addition, a frequently reported com- 70 plaint is the fact that medical services 14.1) It shall be unlawful for medical Area of Citizen Rights, are hardly ever transparent with their practitioners or other professionals Participation and Transparency statistics and case management, and to conduct any sex assignment treat-

An analysis of the different that patients have difficulties access- ment and/or surgical intervention realities, positions and ing their medical records (Heinrich Boll on the sex characteristics of a minor requirements of the intersex / DSD population Foundation, 2013). which treatment and/or intervention in Barcelona can be deferred until the person to be Regarding informed consent, it has treated can provide informed consent: been suggested that individuals them- 14.2) In exceptional circumstanc- selves should decide whether or not to es treatment may be effected once have “elective surgery” (surgery per- agreement is reached between the informed on psychosocial grounds, and terdisciplinary team and the persons which, if not performed, would pose exercising parental authority or tutor no danger to the patient’s health). It of the minor who is still unable to pro- calls for patients to be guaranteed the vide consent. For as long as the med- necessary time to carefully assess the ical procedure is driven by social fac- risks and benefits of the procedure and tors without the consent of the minor, to identify what is the most suitable it will be in violation of this Act. The right to self-determination Information and support: and physical integrity: In 2013, the Parliamentary Assembly It is considered that early elective of the Council of Europe insisted on surgery does not respect the right to the need to provide appropriate advice self-determination and physical integ- and support to children, parents and rity because babies and young chil- families. It argues that this provision dren are not in a position to give their of information and services, as well consent. The United Nations Special as being the responsibility of medical Rapporteur on Torture (2013), appeals or psychosocial professionals, should for any law to be rejected that allows also involve intersex people and civil intrusive and irreversible treatments, society. It is at this point that it calls for including genital normalisation sur- the need to improve training in health gery performed without the free and and social services regarding intersex 71 informed consent of the people con- issues and their implications on human cerned. This stance is shared by other rights. Area of Citizen Rights, Participation and institutions and nations, such as the Transparency

Swiss National Advisory Commission Legal recognition: An analysis of the different on Biomedical Ethics (2012), which realities, positions and requirements of the appealed for surgical procedures per- Birth certificates and other official intersex / DSD population formed for sociocultural reasons to be documentation almost always require in Barcelona eradicated. a person's gender to be identified in binary terms. It has been reported that The proliferation of reports on intersex people without a clearly identifiable issues from national medical ethics sex have to cope from birth with the committees has spread awareness of fact that they are placed in identity this approach. The United Nations limbo (See the following section for Inter-Agency’s recent adoption of a information on new legislation to pro- position in response to sterilisation is mote legal recognition). viewed as a milestone in the merging of medical and human rights approaches. This report also includes the violation of intersex persons’ physical integrity.

Vignette by Kate Bornstein (1994)

Legal considerations

Promoting awareness More recent decisions settled by the and reforming legislation: courts are not free from controversy and reflections: in Australia —in March Legislative reforms are seen as nec- 2010, thanks to the case of Norrie essary tools to achieve the equality of May-Welby— a third gender option intersex people. These reforms should was included in birth certificates and raise awareness about the standing of passports, "indeterminate" or "sex these people in society, as well as the not specified". Also in Germany, since discrimination and prejudice that they November 2013, you can leave it blank endure on a daily basis, even as adults. or select man or woman on birth certif- In 2013, the Australian Parliament icates; and the same in France, where a introduced intersex status among other person can also be recognised as gen- fields protected from discrimination. der neutral. With respect to German It is believed that an urgent review of law, although in principle we find our- 72 medical practices and current laws is selves at the forefront of a progressive Area of Citizen Rights, needed to identify gaps in the protec- law that provides legal recognition, it Participation and Transparency tion of these people and take measures is argued that it leaves intersex peo-

An analysis of the different to address these problems. It has also ple and their families in a very vulner- realities, positions and been suggested that this review should able position. First of all, to speak of requirements of the intersex / DSD population involve organisations such as the OII an indeterminate sex presupposes the in Barcelona Europe and ILGA-Europe, who work to existence of a particular sex; it reverts defend the human rights of intersex to putting distance between the nor- people and who have a long political mal and the abnormal and, therefore, history in this area. In fact, the OII Aus- belief in the naturalness of duality is tralia is the organisation that created maintained. Furthermore, the party the intersex flag in July 2013 for those with legal standing to classify a baby intersex people that needed some as one of the three categories is a team form of symbolism. This flag was an of medical experts who determine how attempt to create something that was those born with ambiguous genita- not derived from other symbols, and at lia should be registered, since the law the same time steering away from col- became effective —which means, in ours, such as the pink and blue of other principle, and in the absence of judicial flags. Morgan Carpenter, of the OII Aus- interpretation, that the register does tralia, explains it this way: “The circle is not provide for changes to people born unbroken and unadorned, symbolising prior to 1 November 2013. Ultimately, wholeness and completeness, and our this means that newborns are regis- potentialities. We are still fighting for tered as X based on a report prepared bodily autonomy and genital integrity, by a medical team that regards them as and this symbolises the right to be who abnormal (García-Dauder, 2014). Preves and how we want to be”. (1998) warned about the consequences of including an indeterminate category in background documentation. Accord- ing to the author, since expectations are set by sex and gender in most social interactions, disabling this feature for people could be extremely problematic for them, socially. For her part, the North American inter- These kinds of reflections on the new sex activist, Hida Viloria (2013) argues intersex legislation and policies lead us that, although a step has been taken to consider the concept of “intersec- towards recognising the legal exist- tionality” (Crenshaw, 1989). Intersec- ence of intersex people, it has been tionality has been used as a theoretical implemented without taking into tool that allows you to describe the account that, in Germany, to enter intersections between the differ- into a marriage you have to be listed ent axes of domination and see how as a "woman" or a "man", and you can they work to reinforce each other. It only get health insurance if you regis- also allows us to see the interrelation ter using one of these two categories. between the different forms of vio- Many people have voiced their belief lence, sexism, racism, classism, dis- that these issues should be taken into crimination for not using the dominant account before such a radical reform languages, specific discrimination due 73 is implemented. Some associations, to disability, lesbophobia, homophobia, such as the Deutsche Gesellschaft für biphobia, transphobia, age discrimi- Area of Citizen Rights, Participation and Transidentität und Intersexualität and nation, discrimination against minori- Transparency

Zwischengeschlecht, believe that the ties, Islamophobia, Christianophobia, An analysis of the different reforms in Germany will not prevent rejection due to political ideas, etc. At realities, positions and requirements of the gender assignment surgery. They argue the same time, it allows us to see how intersex / DSD population in Barcelona that, in response to the fear of inde- gender, ethnic origin, social class, (dis) terminacy, the parents of babies with ability, sexuality, age, minorities, politi- genital ambiguity, in succumbing to the cal ideas or religious beliefs are inter- normalisation pressure, will opt for cor- related, which prevent or encourage rective surgery (García-Dauder, 2014). discrimination or multiple inequalities when health or political agendas are According to Viloria (2013), with this put forward. For this reason, we must new law, a new class of citizens who ask ourselves where they stand or are denied equal rights and access to whether we're excluding people who basic services has also been created, have been diagnosed as intersex/with and they are being left without legal DSD when creating policies for people protection to respond to the abuse in social exclusion, gender equality or that their bodies are subjected to. For immigration and integration policies. his part, Mauro Cabral, an Argentinian In the same way, we should also ask trans and intersex activist, says that ourselves who we are excluding or if we it is important to distinguish between are leaving these people in a position Germany and Australia: “Australian law of greater vulnerability when design- allows adults to access an X in their ing specific policies for this group. Nor identification while German law allows should we forget, in a city as cultur- intersex newborns register as an unde- ally diverse as Barcelona, about who termined sex”. we may be leaving out of this report because they do not have the basic conditions to participate in an associative movement. INTERSEX/DSD INDIVIDUALS IN SPAIN’S LEGAL FRAMEWORK

We are witnessing ongoing legal The Law on Gender Identity and Expres- changes in the field of intersex/DSD sion and Social Equality and Non-Dis- and major victories for the rights of the crimination of the Community of intersex community in European and Madrid (March 2016)— the legislation international laws. We have already that currently covers intersex issues in talked about the new legislation that the most comprehensive way in Spain, prohibits the performance of surgical and most recently in the Balearic procedures on minors (in Malta and Islands (May 2016), the latter of which Chile, 2015) and about the new legal is almost a copy of the Madrid law— is category, indefinite gender, available intended to guarantee comprehensive on official forms in Germany and Aus- and adequate care for medical. psy- tralia. Soon, we shall hear about new chological, legal, social, employment, victories, probably in the world of sport. and cultural needs. Detailed below are some of the points that it covers. 74 In Spain, legislation on intersex issues Area of Citizen Rights, has only just started, but in recent It specifies that, in the case of intersex Participation and Transparency years we have seen intersex issues people, and as a new feature, the pres-

An analysis of the different appearing timidly in virtually all of the ent regulation guarantees the physical realities, positions and LGTB policy legislation of the State. integrity of intersex children until they requirements of the intersex / DSD population However, as a result of what has hap- are able to define their own identity, in Barcelona pened in the international legislation and offers the protection of privacy already mentioned, we believe that, and dignity against practices of expo- before considering any radical changes, sure and analysis of an abusive nature. all of the pros and cons need to be thor- It also recognises that in attaining the oughly examined. After reviewing the protection of intersex people, the diver- latest legislation published and draft sity of human bodies must be recog- legislation that covers intersex issues nised, and the belief that there is only in Spain, our conclusions are as follows. one regulatory standard for correction surgery must be eradicated. The reason Intersex individuals are currently for this is that it leads to intersex chil- taken into account in legislation in the dren being operated on during infancy regions of Madrid, Navarre, the Basque to assimilate them to the standard country, Galicia, Extremadura, Catalo- of man or woman, without knowing nia and the Balearic Islands. which gender identity is actually felt by the intersex individual: "man, woman Generally speaking, intersex issues or simply intersex, any surgery that have been included under the LGBT assimilates a child to a specific iden- umbrella, so when the law speaks of tity could result in a real and traumatic any common aspects, it does so in the castration". following way; “lesbian, gay, bisexual, trans and intersex people", without Despite this, we see that intersex con- further nuances or prior chapters that tinues to be identified primarily as a specify which individual aspects or dif- childhood problem, since the protec- ferences to bear in mind regarding peo- tion it provides is defined only in terms ple with intersex variations. of early genital procedures and identity issues. In fact, we interpret a tendency to associate intersex people with a gender identity that does not conform to the normative standards. The law also prohibits genital sur- 3. Hormone treatments must not be gery which the affected person has carried out for experimental pur- not consented to or is not necessary poses or otherwise, until that per- to restore biological functionality for son or their legal guardian requests health reasons. them based on the perceived sexual identity. In article 8 ("Advisory services and support for transgender people, their 4. Genital examinations must be lim- families and people close-by") under ited to what is strictly necessary heading I ("Administrative treatment and needed for health assessments. of gender identity"), in section 4 it says that all services referred to in the pres- 5. Health workers need to be trained ent article will also specifically attend with a particular emphasis placed to intersex people. on politeness and privacy. 75

Under heading II, "Healthcare for trans 6. A patient’s privacy must be pre- Area of Citizen Rights, Participation and people", in article 15, "Healthcare for served in their medical records to Transparency intersex people”, it says: ensure their condition is not visible An analysis of the different to all health workers who access realities, positions and requirements of the 1. The public health care system of their file, except in cases where it is intersex / DSD population Madrid must ensure the eradica- strictly necessary. in Barcelona tion of genital modification practices in babies which serve only to A level of care in the field of sexual and meet surgical standards, at a time reproductive health has also been pro- when the real identity of the new- posed, with specific programmes that born intersex individual is unknown. respond to the needs of each condition. With the exception of there being In turn, it is considered that there is a medical grounds to protect the need for research in assisted reproduc- infant’s health and always with tion techniques and access to treat- legal authorisation. ments that facilitate these individual’s potential for fertility, whether now or in 2. We must seek to retain the gonads the future. in order to preserve the processes that will occur in the future that are not hormone-induced, including tumour markers in check-ups. MAJOR CONTROVERSIES

The dangers of polarisation and the single story

In carrying out this analysis we have identified various positions which are in direct opposition to the management of the intersex/DSD community. We can outline three different stances: on the one hand, there are people who defend surgery as a solution to problems, or the stigma aimed at people with atypical genitals. These people continue to evaluate gender identity, gender roles and sexual orientation in people diagnosed with DSD. This position is typically held by biomedical professionals. In an intermediary position are the professionals, parents and patients who trust in the need to work from the field of medicine, improving care procedures, working on bioethical issues and educating, and creating collaboration networks. Within this group are those who devote their efforts to working on stereotypes and gender bias, and those who do not put a lot of trust in options aside from elective surgery. Lastly, we found another group who allege that the issues threatening intersex people are clearly related to socio-political interests, cultural values and beliefs, composed of rigid concepts, such as gender assignment, sex/gender, masculine or feminine. From 76 this point of view, only a legal or political solution can remedy the discrimination and Area of Citizen Rights, lack of human and sexual rights of this community. In just a few years, the number Participation and Transparency of reports and publications about human rights, LGTBI activism, respect for corporal

An analysis of the different integrity and self-determination has increased. According to H-inter, we find the key realities, positions and to this conflict in the concept of "functionality", understood as the ability to function requirements of the intersex / DSD population personally and socially. In that regard, he says: in Barcelona I would speak a lot about functionali- affective communication, and so on. ty. In other words, the doctor shouldn’t And evidently, on a urogenital level, consider something anomalous if it of course. One of the things I consid- is functional. While genitals remain ered about not correcting hypospadi- functional... it could be that you can’t as as an adult, was that I would have get this person to reproduce. But the problems urinating. In other words... aim is not for them to be fertile, but There was one thing I did insist on, I to have genitals with which they can said that I would be very happy to be achieve satisfying relationships. I be- able to pee standing. // Okay. I didn’t lieve that in this day and age, in the go in the end. Because it’s nonsense. 21st century, thanks to things we I can pee quite happily sitting down. have worked on together, people be- And then, every time I say that I pee ing able to reproduce is pretty out- sitting down, I come across 500 oth- dated. There are people that haven’t er people that do too, because of the considered having children, that can’t prostate. And I say: well, that’s cool. have children, and they all lead very / These are things that happen, and functional lives. I don’t think that a there are people who think that they person’s objective should be to repro- are very important, but they’re not reduce. // I would speak about function- ally. And when you question them, you ality on a sexual level, on the level of start making them realise. In this competition between "medical question-social issue", the complexity of the subject is often obscured, it hides the every day doctor-patient experiences in which positions are not so polarised, as well as the diversity of people and situations. In addition, it destroys the opportunity to attend to the health of these people from a true biopsychosocial perspective and the ability to create support networks. In Miguel Missé’s interview with Vincent Guillot, a French activist from OII France during his stay in Barcelona in 2009, Guillot considered the differences that exist between European and North-American activism. In the USA, it was the affected individuals themselves who denounced the medical practices and asked for changes. In Europe, intersex issues, became known and disseminated through an LGBT or queer academ- ic and militant context. In this sense, Guillot admitted the difficulty in reconciling the intersex movement in Europe, considering that great differences exist between the movements of patients with intersex conditions/DSD —in which the majority of people with intersex conditions have sought a reference community— and the political 77 intersex movements— in which the minority of people are intersex: Area of Citizen Rights, Participation and Patient associations have existed pathology), and on the other hand, be- Transparency

for a long time, but each one works cause the founders of the movement, An analysis of the different for its own "pathology" without ever feminist/political militants, were not realities, positions and requirements of the calling people “intersex” or “her- sufficiently aware that all emerging intersex / DSD population maphrodites”. At the beginning of the movements must build themselves in Barcelona 21st century, the intersex movement up (the need to create a name for emerged in Europe in the shape of a themselves, make complaints) be- feminist/political movement. Since fore addressing political struggles. then, it has been in a constant state Currently, there is a misalignment be- of evolution. On the one hand, between the historical militants and the cause everything needs to be invent- intersex community who still want to ed (overcoming stigma, developing explain and find themselves amongst vocabulary, learning how to get to each other (Missé, 2009). know and accept oneself beyond the Certainly, the presence of people with ment, other forms of self-awareness, intersex variations/DSD within the or through the understanding of gen- LGBT communities is rare or occa- der provided by gender and LGTB the- sional, and confrontation between ories. At the other end of the scale, we LGTB political activism and medical found reports like the one published by discourse is constant. PSGs would be the Council of Europe Commissioner located in an intermediary position, for Human Rights, Intersex and Human showing more of a tendency towards Rights and Intersex People (2015); a medical discourse, with unquestiona- report which does not include people ble alliances with medical profession- with DSD who only seek solutions in the als and the centres that address these medical field. None of these stances issues. Some doctors are reluctant to take into consideration the totality, and abandon their prestigious and power- even less so, the heterogeneity of back- ful positions, to accept their limitations grounds, experiences and alignments. 78 and to accept that medical knowledge Area of Citizen Rights, and practices can only address part of The LGBT-I discourse about intersex Participation and Transparency the problems. Since the 1990s, medi- leads to upset in medical teams and

An analysis of the different cal bodies have been heavily criticised, in many PSGs. People from the Cata- realities, positions and with condemnation of "normalisation lan Ascatsk association explained that requirements of the intersex / DSD population surgery”, and medical groups have tried they do not feel included or addressed in Barcelona to incorporate publications from Peer under the DSD umbrella, and far less Support Groups (PSGs) about different under that of intersex. The connota- conditions into their meetings. Today, tions of the term “inter-sex”, “a half- the accusations are defended using the way sex”, with echoes of homosexuality argument that they no longer work with and/or non-prescriptive sexualities, their backs to the patients, and that fuels intense rejection. Without a they incorporate their viewpoints and doubt, these reverberations are fraught assessments. Nevertheless, we must with homophobia and transphobia, bear in mind that only a small portion but in any case, they do not represent of people diagnosed end up being part a group which feels threatened under of a PSG. We wonder what the profile of these acronyms and prefers not to be people is like who do not work or coop- included in these policies, and would erate with medical bodies or PSGs. rather be covered by health policies Those people who have never come to catering to rare diseases . These groups patient or activist groups. Those who have their own health demands. Mean- have found answers and ways of under- while, biomedical language and medi- standing away from the medical model, cal and surgical solutions are rejected whether through other types of treat- by the LGTB movement. For example, although the proposal During a discussion between Med. not to assign a gender to people born Fam1 and Gin.Sex1, the former insisted with intersex variations until they can on the need to avoid the unnecessary decide for themselves in the future medicalisation of bodies. He meant was well received by some intersex that he found it difficult to understand activists and LGTBI groups, it is also a why testosterone is still so necessary, stereotype that circulates around this and that it is the one and only solution. associative network. In fact, one of the Gin.Sex1 interjected, arguing that, if he requests described in the third Interna- thinks that way, it is because he has not tional Intersex Forum (Malta, 2013) and understood what identity is, testoster- also by the ILGA Europe,—institutions one doesn’t affect the body, but rather that are central today to the defence the identity, and facilitates the abil- of human and sexual rights and the ity to be what one is. It could be that, intersex community— was the one in terms of confrontation, the problem 79 about "registering intersex children as is proposing this dilemma. Perhaps women or men, being aware that, like we should separate the two plans, the Area of Citizen Rights, Participation and other people, they could identify with desirables —the assessment of our Transparency a different gender or sex when they reality, the pressures and the abuse An analysis of the different grow up". As discussed above, the cre- of gender and ideals—, and the vital realities, positions and requirements of the ation of another box or simply waiting needs of the here and now, the things intersex / DSD population in Barcelona for these people to grow up and decide, that enable us to live in the world we could place them in a position of vul- live in. Regardless of whether we work nerability and expose them to greater in the direction of education on sexual discrimination. Thus, when Kate Born- diversity, to accept more bodies and stein responds to the question “is it identities (in which a woman with a boy or girl?” with, “We do not know. He/ penis can be and feel good, for exam- she still hasn’t told us”, it points out ple), for the time being, it depends on an interesting theoretical and political the cards we are dealt or the resources reflection of social transformation, but we have, a lot of people ask for "med- it does not mean that intersex people icine" and "surgery" to mitigate the have to embody this position. Leaving abuse in our environment. This is why someone without an assigned gender is makes sense to take testosterone to in a society where gender is the main be recognised by others (by oneself) as social structure could also be consid- a normal, typical man. ered a form of violence. An alternative could be to remove the administrative procedures around sex changes and remove gender as an obligatory field in all official documentation (like race and religion). We warn about the danger of a single story. Radically opposed stances invalidate each other and even vilify the proposals that do not conform to their own stance. The most medicalised stances denounce the interference of academia and politics in the life of people with intersex variations/DSD, and on the other hand, the discourses that speaks from human experience hide the people who opt for biomedical approaches and identify with them. The following table outlines the main dangers of this polarisation, as well as the aspects in which they differ.

LGTB(I) MEDICAL CONSENSUS

Nomenclature: (intersex) Nomenclature: (DSD – Differences of

80 Sex Development, Disorders of Sex Development) Area of Citizen Rights, Participation and Transparency Standardise experiences Disregard the Standardise experiences Take for An analysis of the different views of non-activists (e.g.PSGs) and granted that there are no people with realities, positions and requirements of the the unheard people intersex variations/DSD in LGTB(I) intersex / DSD population in Barcelona movements

Exclusion of any experiences that do Exclusion of any experiences that do not conform to the political discourse not assimilate with medical discourse (the belief that the intersex community or medicalisation (the belief that the is wholly represented) experience of all of the people with DSD is represented by their patient collaborators)

Belief in the stagnation of the medical The belief that the “Money model” stances and practices outlined in the is outdated and that the “Chicago “Money model” (without changes or Consensus” is the ideal model (there nuances) are only structural issues with the system: Non-existent/inoperative MDTs and isolated psychological support)

The absence of specificity for each Pathologisation of identities and lives condition in their proposals. Discourse that are non-normative in terms of centred around sex/gender assignment gender (research in gender monitoring and surgical procedures performed on and control —e.g. the controversial babies. research in dexamethasone in CAH)

Sociocultural and gender focus Medical-surgical focus with personalised psychological care LGTB(I) MEDICAL CONSENSUS

Disregard cases which have medical Absence of non-clinical approaches and/or surgical needs in attending to the needs of people 81 with intersex variations/DSD and their families Area of Citizen Rights, Participation and Transparency

Denies the positive effects of Denies the traumatic effects of medical An analysis of the different realities, positions and normalisation surgery in some people procedures (examinations, surgery) requirements of the intersex / DSD population in Barcelona Makes generalisations with regard Does not accept the uncertainty of to “no procedures while there is biomedical practices and research (e.g no consent of the person", without gonadectomies) qualifying the type of procedures and the potential health risks of not carrying out a specific surgical procedure

Lacks recognition for those who choose No openness towards other models surgery (adults) of sexuality (sexuality based on relationships which include intercourse)

Assumes an intersex identity based on Non-acceptance of non-binary gender a non-standard anatomy fluidity or gender expression

Undervalues biomedical research (e.g. Undervalues psychosocial research new surgical technologies) (e.g. diversity, the social construction of science)

Obscures positive medical Obscures or does not give legitimacy contributions to contributions of activists or social sciences

Gender policing

One of the issues that causes parents To prevent this gender policing, it is to worry the most is how to handle proposed that guides, information and their children’s atypical gender behav- training are provided for parents of iour. Gender policing is more intense or children with intersex variations/DSD, even aggressive for those who do not the same type as those made for par- physically conform with the norms. A ents of children who have non-norma- paediatric psychiatrist said that when tive gender behaviour. In this regard, this happens, children become angry, there are plenty of initiatives and reserved, depressed, they become materials in the LGBT and coeducation withdrawn or shut themselves away sector. To cite an international example, in their rooms to play in secret, or they we found a program guide, Outreach have suicidal thoughts. Upon reach- Program for Children with Gender-Vari- ing adolescence, these young people ant Behaviors and their Families, which who have experienced high levels of provides very useful information for 82 parental pressure in relation to their parents frightened by the behaviour ix Area of Citizen Rights, gender report significantly higher lev- of their son or daughter. The guide Participation and Transparency els of depression than those who have answers essential questions —how

An analysis of the different not suffered from this pressure, illegal can I help my son or daughter?— and realities, positions and drug consumption, suicide attempts or offers simple recommendations of the requirements of the intersex / DSD population the practice of unsafe sex. kind: love your daughter or son as they in Barcelona are, question traditional presumptions, In the case of some syndromes such create a space where the child feels as KS, studies show a tendency toward safe, encourage activities that benefit the consumption of toxic substances social acceptance, make your daughter like alcohol and marijuana as a person- or son feel valued, look for resources ality trait of the disorder itself. Never- and support, talk with other important theless, we have not found any studies people in your life, prepare your daugh- about the psychosocial triggers that ter or son to face abuse from their could lead to this consumption. H-Hi- peers or, anticipate problems and look pos reported that: “I know a lot of peo- to actively prevent them. The guide also ple diagnosed with hypospadias who warns of the pitfalls that they need to started to drink, take drugs and med- avoid falling into, such as provoking icate with anxiolytics because of this blame, pressuring them to change, etc. secrecy. Of feeling bad about yourself, It also looks compassionately on par- of this shame. What do you do? You ents, and tries to help them manage drink to forget, you get drugged up to their own feelings. forget... Because it’s a massive burden” (H-Hipos).

The right time for surgery, the decision-making process and informed consent

Although the medical professionals we even reached the point, in the care of talked to prefer to support the Interna- transsexual children, of how a diagno- tional consensus guidelines of 2006, sis should be made, being against or in they also assured us that they do not favour of the psychological aspect, etc. agree on when to defer genital surgery, and claim that there is no consensus Psychologist and sexologist, H-Hipos, or clear guidelines about it. A paedi- claimed that the subject of surgery is atric endocrinologist explained that, still, for the most part, invisible and although there is a tendency to operate lacks control, in such a way that the in the first year of life, the patterns that ability to monitor whether people are mark the current paradigm shift and given all of the necessary and varied which are, without a doubt, influenced information is lost. Ma-Nr5 criticised by the activist movement defending surgical procedures, claiming that children’s rights, sexual and reproduc- “they don’t operate for health reasons, 83 tive rights and those that defend the they operate to achieve normalisa- patient, are generating controversies: tion.// We’re talking about social nor- Area of Citizen Rights, Participation and malisation, not medical. They shouldn’t Transparency

Much has changed in the approach to meddle in that”. Regarding hypospa- An analysis of the different treating bodies. They are still in the dias treatment, H-Hipos stated that realities, positions and requirements of the 19th century, if not the middle ages, surgical repair is systematically rec- intersex / DSD population in Barcelona right? // For example, about recent ommended but little is known about hyperplasia surgery, and coming from what these men experience; their sexu- big cities, they say: “We’ll operate ality.On the few occasions that this has when they’re older” and we’ve operat- been evaluated, only coitus centred ed on them at 10 and 12 years of age. standards and scales were used: // This, nowadays, has no justification. “The surgeon told us that they’ll do it What the doctors say, that —without when we’re bigger”. No. // Nowadays, corrective surgery, there is no normal you have information everywhere. On life”—, is false. // There are people the phone ... you're looking , and you who have suffered far more because have to read a little and "bloody hell, of corrective surgery. Botched cor- how is it that here it says that they rections, multiple procedures. It gets are already doing it before they're one very complex here: when a person has and a half or two years old?” (Cap. had lots of operations. In certain cas- CirPed.Hosp4.). es, it’s more complex than not having had any. What I mean is that, there is Cap.Hosp1 also considers it a mis- still a lack of visibility. On the subject take, even cruelty, to condemn girls of hypospadias, it is very important with CAH to rejection throughout their because there are so many cases. For childhood due to the appearance of example, in my case, I really encour- their genitals, so that they can make aged myself to write things down on their own decision when they reach a human level, in the first person, to adulthood. The researcher pointed out help these people to start a dialogue. an issue to reflect upon and review, To view it all more normally... not nor- which is the fact that activists have mally, but with less complication. It is systematically criticised feminising complex, but it is not especially com- surgery and, in contrast, haven’t said plicated. anything about masculinising ones. We are also prompted to reflect on the disparity between stances, which has In scientific literature, the possibility one thing, and making it functional is of living without surgery disappeared. another. Not only do the testes con- In the past, in 1860, it was possible. tribute to masculinisation and the de- They said that there was a doctor velopment of secondary sexual char- who left about four children as they acteristics, they contribute to a series were. And these four children went of... Everything. Not intervening can on to have children too. That means mean that the testis does not work that fertilisation was possible. There correctly. But, of course: “We perform wasn’t that difficulty. I have been to a procedure, and at the same time, meetings with surgeons sometimes, we make a gland stop working”. Those I know that it’s a business. And it’s a are the cases in which...; if we want to very successful business. Because save the testis, a necessary gland, we you arrange for a few children around have to operate. We have to construct six months of age to be operated on. a scrotum, and to do so, we have to 84 And they say: “We’ve already over- repair or move the urethral opening. Area of Citizen Rights, come so much, we already know how I’m not saying that it comes out the Participation and Transparency to do this”. tip and that the child can pee stand-

An analysis of the different ing. It comes out between the base of realities, positions and H-inter brings new scrutiny to the the penis, where the scrotum is, with requirements of the intersex / DSD population debate: the unclear boundaries the testes descended, but that’s an- in Barcelona between necessary and unnecessary other thing. Whether the child pees procedures. In this regard, I will say standing or sitting, it’s another story. that in many cases, “not intervening is The issue is with saving the testis. // already an intervention”: Another type of case is “my little girl has an enlarged clitoris”. Okay, but I think that when we talk about un- does that affect her in any way? Does necessary operations... The other day it pose her a problem? No. So, that's I was speaking to the mother of a boy it. But, it’s big? So, what? born with hypospadias and some genital ambiguity. Obviously, in this case, If the child is born and grows up feeling to ensure that the testes were func- like their body is normal, they won’t be tional, it was necessary to construct insecure about sexual relations when a scrotum, to repair it and all that. So, they have them. “It’s about whether here the procedure is necessary to I’m normal, isn’t it?” Just like there are ensure a quality of life for this child in big and small breasts, there are big the future. Because not intervening in and small clitorises. In this case, sur- this case is an intervention: I have al- gical intervention shouldn’t be neces- ready decided how my son’s quality of sary. It is a matter of aesthetics. life will be. And that is very important, isn’t it? The legislation always speaks P-CAH pointed out a problem with the of banning unnecessary procedures lack of information from the doctors or looking to avoid..., they always in- about other possibilities or alternatives clude the adjective "unnecessary". / to surgery. According to the mother, And that is very important: to know they don’t explain to the parents or how to distinguish between whether adults “that you can choose to not have it is necessary or not. For example, in an operation, that that possibility does these cases it is important, because exist”. She recently appeared on a radio if the testicle remains in the abdo- show about CAH in which they specif- men, it is unclear if it will develop into ically spoke about this non-surgical a tumour or not. / But malignancy is alternative being offered (although she did not share which doctor had quoted The bioethical consideration seems it). When the women from the CAH inevitable with regard to parent’s group chatted about this interview via informed consent and the minor’s their Whatsapp group, they expressed right to sexual autonomy and physi- surprise about not ever having thought cal integrity, which are "invalidated if that alternatives existed, in the same irreversible surgery is performed". In way that it surprised them that CAH the case of adult individuals, informed was referred to as an intersex state.. consent and free choice or autonomy They hadn’t heard that before. to decide about their bodies prevail (García-Dauder, Gregory and Hurtado, P-Grap considers the uncertainty of 2015). However, they insist on creating whether to legislate, and how to do the conditions for informed consent so, in terms of banning surgical pro- involving choice and psychological cedures. The GrApSIA spokesperson and emotional support for the “suffer- 85 expressed doubts about the demand ers” and parents, focusing on the fol- to leave genitals alone under any cir- lowing aspects: the need for complete Area of Citizen Rights, Participation and cumstances, on the justification that and comprehensible information, open Transparency surgery reduced anxiety, or the unclear communication, to receive information An analysis of the different boundaries surrounding surgical proce- in favour of and against the recom- realities, positions and requirements of the dures performed for health reasons. In mended treatment, information about intersex / DSD population in Barcelona any case, there is widespread demand the risks and benefits that may result from people with DSD and their parents from the recommended treatment, for the health organisation in general, information on other possible alterna- and hospitals in particular, to facili- tive treatments, including the rejection tate and regulate a free and informed of treatment, information about the decision-making process around any risks and benefits that can result from care procedures. In fact, in the field the other possible alternative treat- experience with debates between ments and the rejection of treatment experts, patients and families, beyond and, above all, to be given enough time confirming answers to questions like, to make decisions. “surgery in infancy: yes/no” or “removal of gonads: yes/no”, they led us to decisive questions about the medical and social management of the variety of sexed bodies and to bioethical questions inherent in decision-making and informed consent. There is open controversy about The need to find a way for medical informed consent being provided by professionals to have the obligation parents. Boyle, M., et al. (2005) stated to advise about all of the alternatives, that the information or advice is full of including non-surgical options, is reit- cultural constraints on what it means to erated. Although they may not place be a man or a woman, what your normal trust in, or do not have information social and sexual functioning is like, about the experiences of people who and full of assumptions about what are not involved, they should refer to genitals of both men and women are people or groups where they can find for. According to Dreger (2006), parents references to other types of non-surgi- receive the message that the bodies of cal experiences: their babies are wrong or monstrous. In response to this realisation, Guil- It’s due to ignorance and because lot (2008) claimed that although it there is also this idea that they pos- 86 apparently seems that they can decide sess the truth. But they don’t, they Area of Citizen Rights, freely, there really aren't any options should enable contact with the alter- Participation and Transparency to choose from. Many interviewees natives. They should be honest and

An analysis of the different also concluded that parental decisions say: “This is where we can get to and realities, positions and about early surgery in children with we can do this on a clinical level, but requirements of the intersex / DSD population DSD depend on the information and there are other alternatives”. “There in Barcelona advice received from the health profes- are other alternatives that we don’t sionals that take care of them: know about, but by calling this place, they can inform you”. But, how do you The precise issue would be, in the start off that conversation? I don’t case of a child who is diagnosed with know how to introduce it so that it rather severe hypospadias, without becomes an obligation. Because now any health problems, links, fistulas or you are in the hands of people’s good whatever, how these parents who are faith. At the moment, they are not directly told "operate" and they op- being informed about anything else erate, and how these doctors would (M-Grap3). have the obligation to ... When there is informed consent, it means that It helped me to know that other peo- you've given all the options, and that ple go through this state. We have the includes not operating. How to reach same thing and we have to accept it. expert professionals so that they also It's important to have these people have this information, and then they to refer to, that have spoken about decide. Because these parents do their intimate lives. For example, with not take this possibility into account: the mother of a boy with hypospadi- that the children choose. They believe as, we spoke about his intimate life, that it is necessary (H-Hipos). adults who have been operated on or not, etc. And mothers should be able to speak with these people to make a final decision on surgery (H-Hipos). CHAPTER III SOME INITIATIVES PUT INTO ACTION IN OTHER CONTEXTS

Strategies against stigma

The Advocates for Informed Choice (AIC) Support groups have developed a series of projects among which The Interface Project (TIP) • I need you to inform me about the stands out. This is a platform that aims support groups that exist. Being to raise the profile of and broadcast part of a community of men/women/ videos that contain the testimonials of people with DSD truly gives me a individuals with intersex conditions/ sense of belonging. DSD, in addition to the nationwide project Inter/Act, a specific place for young • The doctor gave my parents a leaflet people with intersex conditions/DSD from a support group, but he advised between the age of 14-25 to express them not to go to it because they their individual needs. The idea of this were “crazy”. project is to help adolescents to defend their rights, both during doctors visits • The association that I found with 88 and in their families, at school or uni- other men/women/people dedicated Area of Citizen Rights, versity, in response to problems like to these battles has really helped me Participation and Transparency bullying. The requests vary between to grow.

An analysis of the different the need to participate in PSGs, the realities, positions and need for honest and complete informa- • The issue of mental health due to requirements of the intersex / DSD population tion about their diagnosis, the request having DSD is more important than in Barcelona for clear information that there are all physical issues. kinds of alternative treatments and dignified care. We believe it's worth paus- • My parents never spoke to anybody ing to reflect on some of the requests else, their silence affected my whole expressed by those involved in this pro- family. ject, due to the clear connections we discovered with the Catalan context: • The support groups are great but that is just what they are: support! The only support that we cannot get from our doctors or families.

• Some of the best treatments I’ve had have been through support groups. Revelations • Don't take it as a given that I want a husband. • Be honest. Why don’t you want to tell me something about myself? Why • Don't take it as a given that I am would you know about it if I don’t? heterosexual. Honesty means that everything is not shameful. • Know what you are talking about. We shouldn’t have to educate the • I already knew about it when I was doctors. seven years old, but my parents didn’t think so. • Don’t try to convince me about how horrible it is to have a period. • I wish I had known about all of this when I was thirteen, I would • Please, tell me what’s good about my 89 have started going to meetings condition. For example, not having to immediately. shave my armpits. Area of Citizen Rights, Participation and Transparency

• My classmates started to experiment • Don't emphasise how rare this is. An analysis of the different sexually, but I was fearful of my own realities, positions and requirements of the body. • The doctors told me that they had intersex / DSD population never met someone like me, but it in Barcelona • I don’t think that my parents knew was a big turning point for me when that they had a choice. I did.

• We are not fragile. Tell us the truth. • I wish my parents had access to therapy. They feel very alone. Communication and treatment • Don't ask me if I feel like a boy or a • Don't tell me that you knew how I will girl. end up. My DSD doesn’t mean that I will be gay/straight or that I identify • Don't question me like I’m abnormal, as a boy/girl. Only talk about facts or like something you’ve never seen about my body. before in your life.

• Don't lie to me. • Don't ask small children if they have any questions when they are in a • Don't lie to my parents. state of shock because of the genital examination you just carried out. • Don't speak to me in absolutes: “This vagina will never be enough to have • Encourage us to write you an email. marital relations”. Encourage us to express ourselves. Drawings, writing, paintings... • “If you know that I can’t menstruate, whatever it may be. Sometimes it’s don't ask me when my last period was”. impossible to ask someone: “What happened to my clitoris?” Surgery In the examination room

• Don't tell a child that surgery is the • Notify the nurses that will be working only way that he/she will be able to with me. have a “normal sex life with their wife/husband”. Always offer a non- • Have a paediatric speculum to hand. surgical solution. Surgery is the last option for everyone else. Why should • Ask the patient how they want the it be any different for us? examination to be performed.

• The surgery on my genitals ruins my • It’s silly to think that an examination self-esteem and confidence as a is not going to upset a child. Even partner and a lover. adult women hate it.

90 • It’s painful that something is • Treat the patients like experts on Area of Citizen Rights, happening to you that you don’t want. their own experiences. Participation and Transparency

An analysis of the different • They operated on me in 1990, when I • Don't protect us by speaking to our realities, positions and was three years old. I wish that they guardians rather than us. requirements of the intersex / DSD population had given my parents other options. in Barcelona I’m sorry I have an enormous scar • Don't invade the vagina of a young and it hurts that they didn't tell me girl with your fingers if it’s not that they had removed my gonads. required.

• There are moments when I think that, • A child can find it difficult to if they had been more realistic about distinguish between a conventional the success of the surgery they genital examination and being wanted to perform on me, my parents touched inappropriately. would have warned me about the extent of what I wanted to do, and about doing it as quickly as I wanted. We all made mistakes.

• Don't tell us that only someone with a medical eye could notice the difference between a “normal” woman and us. It’s devastating to find out that it’s not true.

Recommended guides:

On an international scale, some Warne and Hewitt (2012) offer a series groups/organisations or institutions of recommendations to help parents have developed thorough and under- and healthcare professionals during standable, informative and psycho- this first phase, when there are atypical logical-educational material which genitals and doubts about which gen- is primarily available via the Internet der to assign: for starters, profession- —there is less available in paper for- als should try to avoid terms such as mat. To provide examples of these, "him" or "her" and should refer to the we make reference to the guide with newborn as "the baby.” It is advised to ten recommendations for carrying minimise the psycho-social risks that out vaginal dilations—Top Ten Tips for result from exposing a baby with unu- Dilation (DSDfamilies)—, and clinical sual genitalia, in other words, "restrict- guides directed at intersex individu- ing privacy until a correction of the als and health professionals. The most external genitals has been realised" 91 well-known are The Clinical Guidelines (ibid.). Among the recommendations, it (2006), and other specific guides for specifies that nappy changing should Area of Citizen Rights, Participation and the parents of children with intersex be limited to one or two people, or that Transparency variations/DSD, Handbook for parents changing the nappy in front of siblings An analysis of the different (2006) or When your baby is born with should be avoided. realities, positions and requirements of the genitals that look different… The first intersex / DSD population in Barcelona days (2014). The first guide is based on Dreger (2006) is clear about what the the principle of “patient-centred treat- recommendations should be for par- ment” and provides information rang- ents: “Remain calm” Wait until the ing from all kinds of practical details shock has passed, until the feeling of for professionals, to scripts for talking suffocation disappears. Wait until you with parents. There are other types of have digested the information, until guides and stories published specif- you feel able to ask questions and ically for children and adolescents, speak with other people, especially such as a guide which tells children with other parents or adults who have with CAH about their condition using been through this situation. Wait until language and a format adapted to their you have obtained more knowledge and age —A Girl ‘s Guide to CAH, by Emma feel prepared. (2015) (Climb CAH Support Group, Liv- ing with CAH)—; and a German book explaining intersex in childhood —Lila, Oder was ist intersexualitat? (2009) (Intersexuelle Menschen) —; in Span- ish Pipo y Pepo, dos jóvenes explora- dores (GrApSIA), a story which helps to reduce anxiety in children in response to their gonads, during health centre visits and visits to medical specialists or in response to the possible need for surgery —orchiectomy—; and leaflets from DSDteens.org. Guides for medical professionals According to Harmon-Smith (1998) the key to changing the experience for par- Broadly speaking, the demands ents and patients is for doctors to avoid expressed to medical experts in the conveying the “notion of abnormality”. 1990s are very similar to those that The medical perspective is the first to are nowadays set forth in the Catalan be received by parents, therefore, it is context: of utmost importance to ensure that these parents “do not feel ashamed of 1. Comprehensive and positive infor- their children”. The author defined her mation. proposal:

2. Assign a gender. 1. Do not tell the family not to name the child! It isolates them and they 3. Minimise medical examinations and start to see their child as "abnor- 92 exposure. mal". Area of Citizen Rights, Participation and Transparency 4. Provide images and use terminology 2. Encourage them to give the child

An analysis of the different which is depathologising. a name or a nickname (sweetie, realities, positions and pumpkin, buddy) or a unisex name. requirements of the intersex / DSD population 5. Psychological support for parents in Barcelona and affected individuals. 3. Do not refer to the baby as “the baby”. That will make them see the 6. Recognise intersex people as child as an object, rather than a experts in their own conditions. person.

7. A moratorium on surgical proce- 4. Use the name chosen by the par- dures when they are performed ents (even if it is “sweetie” or some- without the patient’s consent, or thing else unusual). until medical professionals carry out comprehensive retrospective 5. Do not isolate the child in the neo- research on past treatments with natal unit because it frightens the results indicating that it is benefi- parents and makes them think that cial (Kipnis i Diamond, 1998). there is something wrong with the infant. This isolates the family and 8. Carry out long-term studies about prevents siblings, uncles, aunts, the satisfaction and quality of life and grandparents from visiting and of patients (Preves, 1998). initiates a process within the family of treating the new member differently. 6. Allow the patient to be in a nor- Handbook for Mothers/Fathers mal room. Allow other patients in the room or, at most, put them in The guide —Handbook for parents an individual room with visitors (2006)— provides condition-specific allowed. information, gives recommends to mothers and fathers about how they 7. Put the family in contact with sup- can speak with their sons and daugh- port services. ters and other people about the diagnosis, and it suggests resources where 8. Do not prevent the family from they can seek and obtain more infor- accessing information from support mation. The recently published guide, groups. Do no presume that they Your beautiful child:, by Viloria (2013). will not understand or that it will be Information for parents aims to help worse if they discover other condi- parents overcome fear about their chil- 93 tions or related problems. Let the dren’s difference, but not just that, it parents decide which information also encourages them to see it as a fea- Area of Citizen Rights, Participation and they would like or need. Encourage ture to be celebrated, and to be proud Transparency

them to find other people outside of of their children. Ellie Magritte from An analysis of the different the hospital that may be able to give DSDFamilies has also been developing realities, positions and requirements of the them information and share their material with accurate information for intersex / DSD population experiences. parents, regarding what information to in Barcelona give and when to give it in terms of age. 9. Encourage the family to find a coun- She is also designing a website with sellor or therapist. Do not refer specific information for adolescence them to a genetic counsellor, they — DSDteens. Along the same lines, we need emotional support as much as found DSD conversation through the genetic. Refer them to a counsellor, lifecycle, from the Klinefelter Syndrome therapist or social worker with expe- Association, and other guides directed rience in family crisis intervention. at adolescents by the AIC (Advocates for Informed Choice). In the case of 10. Do not make drastic decisions in GrApSIA, parents are calling for guides the first year. Parents need to adapt to be published which outline in detail to their child. They need time to the moment in which their daughters understand the condition and its will be mature enough to understand specific needs. Allow them to be their particular karyotype or the fact present if there is new information that their gonads are testes; how to or ideas. Allow them to understand explain this to them, or when and how that their child is not a disorder that they will be able to tell them that they has to adapt to a medical sched- will never have a period or will not be ule, but rather that it is a person. able to have biological children. These Do not schedule the first surgery parents ask themselves when to give before the patient leaves the hos- them this information, how their girls pital. This will frighten the parents will turn out and if they will be happy. and make them think that they have an abnormal or defective child (Har- mon-Smith, 1998, 371). Intersex psychologist and activist, intersex and DSD (disorders/differ- Gabriel Martín, introduced the first ences of sex development). The guide guide on intersex conditions in Spain reassures anxious parents about their aimed at mothers and fathers —Guia baby’s future, telling them that d’intersexualitat (DSD) per a pares i “although many mothers and fathers mares [Intersex (DSD) Guide for fathers fear that, due to having DSD, the sex of and mothers] — thanks to the Ministry their baby will never be defined, the of Family (Department of Social Wel- truth is that it is very obvious, despite fare and Family Affairs) of the General- the fact that the genitals —on their itat, regional government of Catalonia. own— do not tell us which it is”. The This guide has been a victory, as it guide also advised that these boys and explains to parents, among other girls will have a stable gender identity things, how the process of sexual dif- and that, in case there are doubts ferentiation occurs —it recognises the about the sex, medical tests can iden- 94 process of sexual differentiation as tify it in 90% of cases. This guide was Area of Citizen Rights, being "very complex, it is relatively introduced into hospitals in Catalonia, Participation and Transparency common that there are variations"— in all of the regional hospitals that

An analysis of the different and when and how intersex variations have maternity and neonatal wards. realities, positions and appear, using simple language with Martín mentioned that many profes- requirements of the intersex / DSD population illustrations that help to reduce these sionals had been in contact with him to in Barcelona parents’ anxiety in the face of expecta- request more. tions and fears. It employs the words

Intersex (DSD) Guide for fathers and mothers.

Informative guide to rights

Receiving information about fundamen- Information brochures stand out tal rights, about the right to informed among the more effective efforts and consent, the respect of privacy, being strategies of the AIC which informs taught to formulate the right questions parents and people with intersex varia- to help defend these rights, or helping tions/DSD of a series of rights. The bro- parents to find sources of information chure Know your Rights. A Handbook for to learn more about their children's Parents introduces itself like this: condition can be a great help for those who receive a medical diagnosis which Know your rights. Finding out your speaks of congenital anomalies and child has a DSD can be a confusing rare diseases. In fact, beyond legal and overwhelming experience. We protection, the fact that a person with understand that, as a parent, you an intersex variation/DSD is still con- want to do your best to ensure that sidered as the subject of rights holds your child has the care and support 95 immense potential. No only is their that will enable them to grow up hap- “normal” recognised and legitimised py and healthy. We also understand Area of Citizen Rights, Participation and before the rest of society, but it also that you want to make sure your child Transparency helps these parents to change their is receiving the best care possible. An analysis of the different own perspective of their children and to While the weight of this responsibil- realities, positions and requirements of the break away from family dynamics such ity may be heavy, knowing your rights intersex / DSD population as secrecy, blame or shame. can lighten your load. This brochure is in Barcelona designed to give you a clear perspective on what rights you have when ad- vocating for your child. In general: The right to privacy:

You have the right... You have the right...

»»To receive considerate, respectful, »»To full consideration of privacy and and compassionate care regardless confidentiality in care discussions, of your or your child’s age, gender, examinations, and treatments; race, national origin, religion, medical condition or disabilities; »»To expect that your child’s condition should not be the subject »»To be treated as an equal in making of gossip and only discussed when decisions about your child’s care; necessary for treatment;

»»To consideration for your personal »»To accompany your child during 96 beliefs and values; examinations; Area of Citizen Rights, Participation and Transparency »»To responses to your requests, »»To know of the psychological

An analysis of the different needs, and concerns; consequences unnecessary realities, positions and examinations may have on your requirements of the intersex / DSD population »»To request a language interpreter if child; in Barcelona necessary; »»To only allow examinations of »»To ask for protective and advocacy your child that are necessary for services in cases of abuse or treatment; neglect. »»To limit persons present during examinations to only those individuals necessary for treatment;

»»To see or get a copy of your child’s medical records and have the information explained to you.

»»The privacy of your child’s medical records is protected by a federal law, the Health Insurance Portability and Accountability Act (HIPAA).

»»You may have additional rights protected by state law, professional guidelines, or regulatory agencies. A contribution of the AIC and, in general, of all the organisations defending the rights of intersex individuals/people with DSD has been to show that there are options beyond the standard medical approach. That there are other alternatives, one of which is the refusal of medical treatment if a person’s health is not at risk. True informed consent should guarantee this fundamental right.

You have the right... adequate time to make your decisions; »»To information that is complete and understandable; »»To be informed if your child’s doctor is considering your child as part of »»To be told about the specific nature a medical research program; of your child’s condition; »»To decline to participate in or 97 »»To be told why your doctor withdraw from a research project is recommending a specific without fear that your child’s care Area of Citizen Rights, Participation and treatment; will be compromised; Transparency

An analysis of the different »»To be told of evidence supporting »»To refuse treatment that is not in realities, positions and requirements of the the recommended treatment; the best interests of your child. intersex / DSD population in Barcelona »»To be told of evidence not supporting the recommended treatment; You have options:

»»To receive information about If you feel that your rights or your the possible risks and benefits child’s rights have not been respected, resulting from the recommended you can: treatment; »»Speak to your child’s doctor or »»To be told about possible nurse; alternative treatments including non-treatment; »»Request a consultation with a patient advocate or ethics »»To receive information about the committee; risks and benefits resulting from possible alternative forms of »»Request a different doctor; treatment and non-treatment; »»File a grievance with the hospital »»To make decisions free from or with state or federal regulatory coercion and pressure; to have agencies’; Contact AIC for more information. MAKING SPECIFIC PROPOSALS AND/OR RECOMMENDATIONS

If they ask us to broadly specify three Raising visibility and awareness priorities that we identified as the place to start acting, we would summa- • Create campaigns to raise the rise them as follows: visibility and awareness of intersex variations/DSD. 1. Raise awareness of the experiences of people with intersex variations/ • Develop guides or information DSD and those of their parents/ brochures. families/caregivers. • Observe Intersex Solidarity Day 2. Provide tools to facilitate joint deci- and create an events calendar sion-making processes between around these dates (the Intersex professionals and patients, as well Day of Remembrance was held as participation in health. on November 8, the birth date of 98 Herculine Barbin in 1838. Nowadays, Area of Citizen Rights, 3. Raise the visibility and awareness the Intersex Awareness Day has Participation and Transparency of psychosocial needs and promote moved to the 26 October, so that

An analysis of the different research from this perspective. educational and informational realities, positions and activities can last until 8 November). requirements of the intersex / DSD population To finish, we will broadly summarise in Barcelona some of the proposals or requests expressed during this study. In the field of patient care (in medical care or healthcare systems)

Rights therapies regarding intersex variations, gender identity, sexual • Create specific public health policies orientation and gender expression. for people with intersex variations/ DSD. • Ensure integrated and adequate attention to medical, psychological, • The healthcare system should take legal, social, cultural and into account the needs of people employment needs. with differences of sex development, and guarantee the right to receive • Prohibit genital surgery from being high quality medical care and profit carried out on people with inter- from health services under equal sex variations/DSD when it is not 99 conditions. required on the grounds of health, when it is only carried out to obey Area of Citizen Rights, Participation and • Ensure access to comprehensive aesthetic norms, or when the deci- Transparency

and high quality information —true sion is not made by the person An analysis of the different informed consent— about hormonal affected. The proposal for “proce- realities, positions and requirements of the treatments, assisted reproduction dures only on health grounds” will intersex / DSD population technologies, surgical procedures sink in quicksand when it comes to in Barcelona and sexual and reproductive health. establishing legislation (for example, gonadectomies or the removal of • Guarantee that both parents and gonads due to the risk of malignancy adults have, at the very least, access when there are no conclusive studies to the most varied information that available). supports or does not support certain forms of treatment. • Be adequately informed about these rights. • Promote dignified and respectful health practices and psychological Health management • Create and standardise alerts on computer programmes in the health • Set up individual units (for example, service so that these patients are for each geographical area or properly taken care of, such as territory) where integrated and alerts for CAH to know what to do personalised care is available. in the event of an adrenal crisis (technological phase). • Develop specific care programmes for intersex individuals / people • Create and enhance IT resources to with DSD. promote patients’ self-care and to facilitate communication between • Facilitate the creation of MTDs professionals and patients. in centres of reference, and the coordination of health services to • Implement a facilitator such as 100 make referrals to these centres. the case manager, liaison nurse or Area of Citizen Rights, patient navigator to handle these Participation and Transparency • Encourage people with intersex situations. This facilitator will serve

An analysis of the different variations/DSD and from the asso- as a bridge to help people navigate realities, positions and ciations to participate in the deci- through the maze of doctors, requirements of the intersex / DSD population sion-making processes of the MTDs. medical offices, clinics, hospitals, in Barcelona outpatient facilities, patient support • Encourage and promote people with organisations and other parts of the intersex variations/DSD and from the health system. associations to participate in health. • To facilitate the channelling of • Ensure that people with intersex var- patients or referral to expert iations/DSD take part in decisions healthcare centres. related to the standardisation of new nomenclatures. The use of depatholo- • Streamline the specialist referral gised terms such as variations or dif- process and the process to change ferences are preferred over terms like doctors, so that a proper diagnosis conditions, abnormalities, disorders. can be made as quickly as possible.

• Create a specific protocol for the • Facilitate access to necessary birth of infants with atypical genitals medication free of cost (funding). with the consensus of medical and psychosocial experts and PSGs. During consultations Research

• Avoid the repetitive and unnecessary • Guarantee the study and research exposure of genitals in front of a of problems affecting the population large group of doctors and medical with intersex variations/DSD and students (to limit the number of their families. people present to a maximum of two, that are known by the patient, and • Promote research into the quality of ensure permission is requested for life in a way that takes into account anyone else to be present or for any the real and long-term experiences new displays). of people with intersex variations/ DSD (sexuality, happiness, etc.) • Use language which is not sexist or pathologising, which welcomes • Promote research into health in order 101 diversity of experiences and that to standardise treatment guidelines respects one’s own identity and (high risk of gonadal malignancy, the Area of Citizen Rights, Participation and gender expression. age at which specific treatments Transparency

should start, necessary and unnec- An analysis of the different • Communicate the diagnosis from a essary treatments, treatment proto- realities, positions and requirements of the positive perspective. cols, etc.) intersex / DSD population in Barcelona • Give families and people with • Promote research into the DSD tools to handle the “clinical biopsychosocial health of people encounter”, a moment that on many who have not undergone treatments occasions is filled with nerves or surgery (gonadectomies, which decreases the ability to retain vaginoplasties, HRT, etc.). information. This material allows the patients, once they have returned to • Promote research into the the calm of their homes, to re-read psychosocial aspects of DSD. the information and prepare for the following consultation. • Promote research into assisted Training reproduction techniques, such as access to treatments to facilitate • Develop and facilitate the creation these individual’s potential for of recommendation guidelines for fertility, either at present or in professionals, parents and adults. the future.(Cap.EndPed.Hosp1 explained that in KS, it has been • Formulate clinical best practice demonstrated that extracting guidelines that include clear and testicular tissue before puberty can easy-to-understand audiovisual make reproduction possible later material. on. Regarding individuals with TS, the possibility is being investigated • Create ten best practice of freezing eggs for future use commandments. “A list of ten (Ma-Turner). The possibility of ethical and almost humanistic 102 cryopreservation of gonadal tissue commandments. One for the City Area of Citizen Rights, which can be unfrozen and used in Council to approve which can then Participation and Transparency the future, has also been mentioned.) be taken to the Catalan Healthcare

An analysis of the different Institute so that it is complied realities, positions and • Promote and fund studies to evaluate with” (Gin.Sex1). Some proposals to requirements of the intersex / DSD population and highlight methodological biases include in this list would be: in Barcelona and/or the implicit heterosexism found in other studies on DSD »»Respect for physical integrity. No (for example, studies on gonadal unnecessary procedures. malignancy, models to evaluate behaviour and quality of life »»Protect emotional intimacy or the treatment of CAH with and health, by regulating and dexamethasone). minimising the occasions on which genitalia is exposed. • Investigate, monitor and sanction studies that use experimental »»Respect for one’s own gender treatments, as well as the potential identity and expression, but negative consequences they have without this having to conform with on people exposed to the treatment gender expectations or standard (for example, the dexamethasone sexual bodies. treatment given to pregnant women at risk of giving birth to a daughter »»Offer care, support and alternative with CAH). options, even if the patient’s decision goes against professional recommendations and beliefs.

»»Offer true informed consent.

• Offer training to medical professionals in communication skills —so that they are able to easily explain terminology using drawings or diagrams, etc. —and about gender— to prevent the use of discriminatory and/or sexist language. Measures for the field of • Create a protocol that directs education medical professionals to refer their patients to these working groups and • Sex and gender diversity PSGs. education, to prevent harassment, discrimination and bullying. • Promote the creation of grants, bursaries or subsidies for the work • The regulation of information carried out within the PSGs so they about sexual diversity in schools can be self-managed. in all stages of infant, primary and secondary education (diverse sexual • Create a consultative and advisory and reproductive anatomies rather body about intersex. This body than binary). should be able to guide and inform people about the subject, provide 103 • Fund the development of information about rights, suggest educational material to facilitate the care improvements in public Area of Citizen Rights, Participation and understanding of intersex variations/ services and promote projects to Transparency

DSD. Age appropriate material for raise the profile of and normalise An analysis of the different children with DSD and also for the this community in order to prevent realities, positions and requirements of the whole of society. discrimination. intersex / DSD population in Barcelona • Educate using positive values, • Create legislation to monitor, appreciating and celebrating human regulate and limit medical practices differences. (also mentioned in relation to dexamethasone treatment).

• Set up an observatory from Social-political-legal sphere which to monitor and control any discriminatory practices directed • Create a space for meetings and towards this group in an institutional gatherings that associations and or employment context (obstacles PSGs for people with intersex were put in place for a woman with variations or DSD and their families, CAH in obtaining her driving licence, professionals and other parties or in cases of KS and AIS, access to can use to deliberate, voice their state bodies such as the Guàrdia opinions and make suggestions Civil or Policia Nacional). about the rights, needs and requests of individuals with differences of sex • Create a network of links between development. institutions, through effective channels with employment offices • Create a safe space where people and schools, etc. from different disciplines can discuss opposing views. • Study the administrative possibilities of surrogacy for women with MRKH • The creation of a working group syndrome who would like to become involving intersex individuals/ mothers in the future. people with DSD and psychosocial professionals (perhaps in the City Council) who participate in and advise together with MDT doctors. Sport The media

• Be aware of the discrimination that • Create recommendations or best arises in the world of sport directed practice guides for the media towards individuals with differences about how individuals with intersex of sex development. variations/DSD should be referred to.

• Reignite the historical memory of • Ensure that media content is people with intersex variations respectful to people with intersex who have suffered discrimination, variations. harassment, violence and dismissal from top-level sport (for example, • Train and advise the media about María José Martínez Patiño, gender/sex equality and diversity. dismissed from the Spanish team). 104 • Follow-up on reports that do Area of Citizen Rights, • Guarantee free participation not respect gender/sex diversity Participation and Transparency without discrimination of intersex and report them to the relevant

An analysis of the different individuals/people with DSD in sport bodies (the Ombudsman’s Office, realities, positions and and in sporting competitions and parliament, the National LGTB requirements of the x intersex / DSD population ensure their correct treatment. Federation, etc...). in Barcelona • Involve sports federations in the fight against this type of violence and discrimination so that they can prevent it and impose sanctions where necessary.

• Raise awareness among the general public to these forms of discrimination in the sporting world.

• Create best practice guides to educate sports clubs, associations and federations. CHAPTER IV CONCLUSIONS

While it appears that the groups viduals. The routine incorporation of included under the intersex/DSD the psycho-social field and education umbrella are unable to agree on what or training in sex/gender and sexual they should be called or how they diversity, both in schools, for health should be categorised, we detected professionals, and society in general, clear similarities regarding the prob- turned out to be one of the most com- lems, shortcomings and requirements mon demands from our interviewees, in the areas of family, social life and in addition to an improvement in the in their pursuit of health and medi- medical care conditions for DSD indi- cal care. Discovering more common viduals. The associative movement ground is difficult when people have a driven by individuals with intersex preconceived idea of what the notion variations/DSD calls for financial aid of "intersex” is. for their self-management, actions to raise awareness about the issue and 106 The fact that many people do not iden- to educate the general public, to ena- Area of Citizen Rights, tify with the umbrella terms prevents ble their contribution to health-related Participation and Transparency them from constructing a community decisions alongside expert teams, as

An analysis of the different that is big enough and strong enough well as incorporating psycho-social realities, positions and to fight common issues related to and socio-cultural perspectives into requirements of the intersex / DSD population their own health and human and sex- care practices. in Barcelona ual rights issues. In performing this analysis, we have proved that, even In conclusion, some of the policy objec- though the word intersex is vague and tives derived from this report should be: annoying for many people with intersex variations/DSD who only understand • To guarantee the right to equality and it from a medical perspective, it has non-discrimination on the grounds of also opened up new possibilities. Ulti- differences of sex development mately, the preparation of this report itself turned out to be an educational • Facilitate the participation and experience and an opportunity to con- representation of these people and nect people with similar problems or groups in all areas of social life. organisations with similar associative objectives. In fact, it has awoken inter- • Promote the eradication of est in understanding the connections stereotypes and prejudices that between the inequality, violence and affect the image of people with struggles encountered by the LGTB intersex variations/DSD. community and that of intersex indi- With this report, Barcelona is putting itself forward as a pioneering city to guarantee these rights. As one inter- viewee remarked:

We are talking about Barcelona, and that in Barcelona and its metropoli- tan area there are eight million people —and, although it is run by various councils, interaction exists. We are not talking about a small town. There is a large population and a lot of diversity here. I think that it is very interesting that large cities are 107 equipped with these kinds of instru- ments, groups and centres. So that Area of Citizen Rights, Participation and what is provided here can be provided Transparency

in other places. Here, we can afford to An analysis of the different create this, which is good for Barce- realities, positions and requirements of the lona, and is good for everyone, in fact intersex / DSD population (H-inter). in Barcelona I. The author explains the enormous VI. This term has been used to refer to variability that hides behind this women with high levels of testos- figure. terone who have not been allowed to participate in competitive II. The association mainly caters sports. for individuals and families with achondroplasia. VII. A bioethical analysis of this controversy can be viewed at http:// III. In Catalan, and in Catalonia where fetaldex.org/dex diaries.html. this study was performed, this would be translated as “anoma- VIII. Available at http://www.sindrome- lies o trastorns de la diferenciació deklinefelter.es/documentacion/ sexual” (Audi Parera, et al., 2011). estudio-sameklin. Nowadays, in response to the dis- 108 satisfaction of patients, especially IX. The guide for parents can be Area of Citizen Rights, of adults with DSD, it was decided downloaded via the following Participation and Transparency that the wording “differences of link: http://childrensnational.

An analysis of the different sex development” would be used org/~/media/cnhs-site/files/ realities, positions and (3rd session about differences of departments/ gender-andsexual- requirements of the intersex / DSD population sex development updates (DSD) ity-development-program/gvpar- in Barcelona (NOT CAH), 27 November 2015). entsbrochure.ashx?la=en.

IV. Transcription symbols: / brief X. Some of these recommendations pause // long pause. have already been incorporated into Law 11/2014, to guarantee V. Refer to “Past experiences of lesbian, gay, bisexual, transgen- adults with Disorders of Sex Devel- der and intersex rights. Other have opment”, in Hiort and Ahmed (eds) also been included in draft bills, (2014), Understanding differences such as the Law on Gender Identity and disorders of Sex Development, and Expression and Social Equal- and “Tratamiento y afrontamiento ity and Non-Discrimination of the del SIA: una tarea compartida” Community of Madrid. [Treating and dealing with AIS: a shared task] in Rev Esp Endocrinol Pediatr 2015;6 Suppl(2):28-34 | Doi.10.3266/RevEspEndocrinol- Pediatr.pre2015.Nov. 329 (http: // www. endocrinologiapediatrica. org/revistas/P 1-E17/P1-E17- S738-A329. pdf) BIBLIOGRAPHICAL REFERENCES

Audi, Laura, et al. (2011). “Anomalías de Coll-Planas, Gerard; Missé, Miguel la diferenciación sexual. Grupo de Tra- (2009). Diagnòstic de les realitats de bajo sobre Anomalías de la Diferenci- la població LGTB de Barcelona. Insti- ación Sexual de la Sociedad Española tute of Government and Public Policy de Endocrinología Pediátrica. Anom- Research Group Institute. Barcelona alías de la diferenciación sexual”. Pro- City Council. toc diagn ter pediatr, 2011;1:1-12 ISSN 2171-8172. Available at: https://www. Council of Europe Commissioner for aeped.es/sites/default/files/documen- Human Rights (2015). Human Rights tos/01 anomalias de la diferenciacio n and Intersex People (Issue Paper). sexual.pdf. Chase, C. (1998). “Surgical Progress Is Audí, Laura; Fernández-Cancio (2015). Not the Answer to Intersexuality”. The “Terminologías, registros y proyectos Journal of ClinicalEthics, 9(4): 385-392. 109 colaborativos”. In: La atención integral a los DSDs desde la perspectiva médica. Dreger, Alice D. (2006). “What to expect Area of Citizen Rights, Participation and Rev.Esp Endocrinol Pediatr, 2015, vol. 6, when you have the child you weren’t Transparency suplem. 2. expecting”. In: Surgically Shaping Chil- An analysis of the different dren, 253-267. realities, positions and requirements of the Boyle, M., et al. (2005). “Adult geni- intersex / DSD population tal surgery for intersex: Solution to Dreger, Alice D., et al. (2012). “Prenatal in Barcelona what problem?”. Journal of Health Dexamethasone for Congenital Adre- Pstcology, vol. 10(4) 573-584 DOI: nal Hyperplasia. An Ethics Canary in 10.1177/1359105305053431. the Modern Medical Mine”. Bioethics Inquiry, 9(3): 277294. DOI: http://dx.doi. Canals, Josep (2002). El regreso de la org/10.1007/s11673-012-9384-9. reciprocidad. Grupos de ayuda mutua y asociaciones de personas afectadas Fausto-Sterling, Anne (2000). Sexing en la crisis del Estado de Bienestar. the Body: Gender Politics and the Con- [PhD thesis] University of Rovira i Vir- struction of Sexuality New York: Basic gili. Tarragona. Books. Ghattas, Dan Christian (2013). Human Harmon-Smith, Helena (1998). “Com- Rights between the Sexes. A prelim- mandments”. The Journal of Clinical inary study on the life situations of Ethics, 9(4): 371. inter* individuals. Heinrich Boll Foun- dation. Heinrich Boll Stiftung Publica- Hutson, John M. et al. (2012) (eds.). tion Series on Democracy. Vol. 34. Disorders of Sex Development: An integrated approach to management. García-Dauder, S. (2014). “La regulación Springer, Verlag. Berlín, Heidelberg. tecnológica del dualismo sexual y el Verlag, Berlin, Heidelberg: Springer. diseño de cuerpos normativos” In: Eula- DOI:10.1007/978-3-642-22964-0. lia Pérez Sedeño i Esther Ortega (eds.), Cartografías del cuerpo. Biopolíticas de Kessler, Suzanne (1998). Lessons from la ciencia la tecnología. Madrid: Cátedra. the Intersexed. New Jersey: Rutgers University Press. 110 García-Dauder, S.; Gregori, Nuria; Hur- Area of Citizen Rights, tado, Inmaculada (2016). “Usos de lo Lee, Peter, et al. (2006). “Consensus Participation and Transparency psicosocial en la investigación y trat- statement on management of intersex

An analysis of the different amiento de las intersexualidades/ disorders”. Pediatrics, vol. 118, no. 2, realities, positions and DSD”. Universitas psychologica. Availa- pp. 488.-500. http://dx.doi.org/10.1542/ requirements of the intersex / DSD population ble at http://recursostic.javeriana.edu. peds.2006- 0738 PMid:16882788. in Barcelona co/sitio/psychologica/. Marañón, Gregorio (1930). The Evolu- Gracia Bouthelier, R. (2002). “Anom- tion Of Sex And Intersexual Conditions alías de la diferenciación genital”. In: Madrid: Morata. Sociedad Española de Endocrinología Pediátrica (ed.). Estados intersexuales Martínez-Mora, Joan (1994). Intersex- e hipogonadismo, 83-92. Barcelona: ual States. Disorders of Sex Differenti- J&C Ediciones Médicas. ation. Barcelona: Doyma.

Guillot, Vincent (2008). “Intersexes: ne Missé, Miquel (2009). «Entrevista a pas avoir le droit de dire ce que l’on ne Guillot: Los intersexuales toman la nous a pas dit que nous étions”. Nou- palabra».[Interview with Guillot: Inter- velles questions féministes, 27(1): 37-48. sex people take the word] Moviment Intersex: contexts i horitzons.[Intersex movement: contexts and outlook] Bar- celona. Available at: http://enlucha.org/ articulos/movimiento-intersex-contex- tos-y- horizontes/#.VRpx2JOsWZG. Muiznieks, Nil (2014). A boy, or a girl or a Streuli, J. C.; Vayena, E.; Cavic- person —intersex people lack recogni- chia-Balmer, Y.; Huber, J. (2013). “Shap- tion in Europe. ing Parents: Impact of Contrasting Professional Counselling on Parents’ Council of Europe Commissioner for Decision Making for Children with Dis- Human Rights. 9 May 2014 http://web. orders of Sex Development”. Journal of archive.org/web/ 20140818214432/ Sexual Medicine, 10: 1953—1960. doi: http://humanrightscomment. 10.1111/jsm.12214. org/2014/05/09/a-boy-or-a-girl-or-a- person-intersex-people-lack-recogni- United Nations. General Assembly tion-in-europe/#more-438. (2013). Report of the Special Rappor- teur on torture and other cruel, inhuman Parliamentary Assembly (2013). or degrading treatment or punishment; Children’s right to physical integ- Juan E. Méndez. Human Rights Council 111 rity. http://web.archive.org/web/ Twenty-second session. Agenda item 3. 20140822223147/http://assembly.coe. Promotion and protection of all human Area of Citizen Rights, Participation and int/nw/xml/XRef/X2H-Xref-ViewPDF. rights, civil, political, economic, social Transparency asp?FileID=20174&lang=en. and cultural rights, including the right An analysis of the different to development. 1 February 2013 realities, positions and requirements of the Preves, S. (1998). “For the Sake of the intersex / DSD population Children: Destigmatizing Intersexual- Viloria, Hida (2013). “Calling a spade a in Barcelona ity”. The Journal of Clinical Ethics, 9(4): spade: intersex is intersex” Available at 411-418. PMid:10029842. the OII Intersex Network (12 April 2013) http://oiiinternational.com/2786/call- Piró Biosca, Carmen (2002). “Estados ing-a-spade-a- spade-intersex-is-in- intersexuales: tratamiento quirúrgico”. tersex/. In: Sociedad Española de Endocri- nología Pediátrica (7è curs de formació Warne, Garry L.; Hewitt, Jacqueline K. de postgrau). Estados intersexuales e (2012). “46,XY DSD”. In: John M. Hut- hipogonadismo:129.-140. Barcelona: son et al. (eds.). Disorders of Sex Devel- J&C Ediciones Médicas. opment: An Integrated Approach to Management. Berlin: Springer. DOI: 10.1007/978-3-642-22964-0_7. ANNEXES INDEX OF ABBREVIATIONS

DSD TS Differences of sex development Turner Syndrome

RD KS Rare diseases Klinefelter Syndrome

PSG GrApSIA Peer Support Group Androgen Insensitivity and Related Syndromes Support Group MAG Mutual Aid Group FEDER Spanish Federation for Rare Diseases MDT Multidisciplinary team FECAMM 113 Catalan Federation for Rare Diseases AIS Area of Citizen Rights, Participation and Androgen Insensitivity Syndrome ISNA Transparency

Intersex Society of North America An analysis of the different CAIS realities, positions and requirements of the Complete Androgen Insensitivity OII intersex / DSD population Syndrome Organisation Intersex International in Barcelona

PAIS HRT Partial Androgen Insensitivity Hormone Replacement Therapy Syndrome ART CAH Assisted reproductive technology Congenital Adrenal Hyperplasia AIC MRKH Advocates for Informed Choice Mayer Rokitansky Küster Hauser Syndrome METHODOLOGICAL NOTES

The basic techniques underpinning ing to conduct the interview) or if there this report are gathering documen- was a lot of ambient noise, we took tary evidence, in-depth interviews, notes and afterwards entered it all participant observation and drifting into a "memorandum". Informed con- and questionnaires. The analysis per- sent was offered with the commitment formed was only qualitative in nature, to preserve the identity of the person because with such a small sample it interviewed, which was not required in was not our intention to seek statisti- all cases. cal regularities, but to understand the different trajectories, experiences and To avoid directing the interviews, in narratives of the individual informants. order to find out which aspects cause We believe that this is the only way to problems for each person or what they access knowledge of the notions, rep- consider relevant or significant, our resentations, ideas, experiences and intention was to start each interview 114 practices of these social actors. with an open question. The explanation Area of Citizen Rights, of this research was, in many cases, an Participation and Transparency In terms of methodological issues, we excuse and a reason to start talking,

An analysis of the different have to point out that these were the to provide certain information and not realities, positions and same as the limitations present in the everything, and even to express dis- requirements of the intersex / DSD population topic of intersex/DSD: —the invisibility, sent. If with this type of introduction in Barcelona silence and taboo—, in addition to the we sensed a lot of confusion in the per- low incidence of these situations, all of son being interviewed, we then opted this has considerably marked out the to direct the questions a little more routes taken. towards a semi-structured interview. This format enabled the individual par- The interviews constituted a privileged ticipants to speak about things that are way to obtain information. If there is relevant to them. something that defines the interviews that have been conducted in the course One of the techniques employed in con- of this research, it is their diversity; ducting the research project was the that is why it has been necessary to group interview or discussion group. adapt to each particular situation and These organised discussions presented be flexible with regard to communi- some additional advantages ith regard cation style, formatting, and the time to the individual interviews, because spent. The range of interviews used ideas and experiences are more likely has fluctuated between spontaneous to appear in group interaction. The dis- conversations, telephone interviews, cussion group was invited to visit the Skype interviews and the in-depth City Council premises, which was also a interviews. The style of the interviews pretext for promoting this group’s polit- alternated between a formal and infor- ical and citizen participation, as well as mal style, some interviews were more a way to meet people with other inter- or less spontaneous, semi-structured sex variations/DSD and discover com- or structured with a script, and the mon demands and differences. Again, duration was between twenty minutes the concealment and secrecy around and four hours. Depending on the sce- these topics impeded participation. nario in which the interview was car- Similarly, it is still difficult to organise ried out, they were either recorded, or this kind of gathering or meeting out- in cases where we were in a rush or side of areas that are not strictly medi- were lacking in time (for example, by cal. In the end, five people participated taking advantage of people commut- in the discussion group. MEDICAL GLOSSARY

Androgen Insensitivity Syndrome When ambiguous genitals are pres- (AIS), Complete Androgen ent, they are typically described as an Insensitivity Syndrome (CAIS) and enlarged clitoris or a small phallus/ Partial Androgen Insensitivity hypospadias (via grapsia.org). Syndrome (PAIS)

Synonyms: androgen resistance syn- 5-alpha-reductase deficiency drome, testicular feminisation syndrome, feminising testes syndrome, Testosterone is a biologically active male pseudo-hermaphroditism, Gold- hormone which is converted into berg-Maxwell Syndrome (CAIS), Morris's another hormone in order to carry out Syndrome (CAIS), Reifenstein Syndrome its functions. This is possible through (PAIS), Gilbert-Dreyfus Syndrome (PAIS). the existence of two enzymes, one of 115 which is 5-alpha reductase. The inef- This syndrome is considered a genetic ficiency of this enzyme before birth Area of Citizen Rights, Participation and condition, inherited from the mother and during puberty causes what is Transparency

—except for spontaneous mutations medically known as pseudo-hermaph- An analysis of the different in the egg— which occurs in approxi- roditism in men, or the atypical devel- realities, positions and requirements of the mately one in every 20,000 births. These opment of external genitalia or the intersex / DSD population people present the XY sex chromosome, urogenital tract. The classic form of in Barcelona however their bodies do not respond to this syndrome is characterised at birth androgens, also known as “male hor- by the presence of atypical external mones” (an unfortunate term, given that genitals (a clitoral-like phallus, hypo- all hormones are permanently active in spadias, bifid scrotum, urogenital both men and women) (Arana, 2005). In tract consistent with a perineal vagi- CAIS, the tissues are completely insen- nal orifice). Nevertheless, the outward sitive to androgens, and in PAIS the tis- appearance of genitalia can range from sues are partially sensitive. Therefore, fully female to male with hypospadias although the development of external and/or micropenis. The testes are usu- genitals continues along female lines, ally found in the inguinal canal or scro- the development of female internal tum. At puberty, unless a gonadectomy organs has already been suppressed or removal of gonadal tissue has been by another hormone —Mullerian Inhib- performed, a significant virilisation itory Factor or MIF— produced by the is observed without gynecomastia or foetal testes (via grapsia.org). Logically, breast development, as a result of the there are no ovaries nor any possibility effect of testosterone. The majority of of menstruation. sufferers are infertile (via orpha.net).

Phenotypic features vary very widely, even within the same family. At the CAIS end of the spectrum, the outward appearance of genitals is typically female (according to the Quigley scale, AIS Grades 6/7) and the child is invariably raised as female. In PAIS, the outward genital appearance can lie anywhere being almost completely female (Grade 6), through mixed male/ female, to completely male (Grade 1). Congenital Adrenal Hyperplasia Non-classic forms do not pose a med- (CAH) ical emergency nor are they detected at birth, but classic forms are visible Synonyms: hydroxylase deficiency type I, at birth and the salt-wasting form is a adrenogenital syndrome, adrenal virilism. serious health condition which requires immediate medical intervention. These This is thought to be the most common forms needs to be treated with adrenal form of intersex/DSD among people steroids like hydrocortisone, predniso- with an XX karyotype, with an incidence lone or dexamethasone (Conway, 2013). of 1 in every 13,000 births (Arana, 2005) —it is estimated that the overall incidence of classic forms is approximately 1/15,000 and of non-classic forms of Gonadal Dysgenesis 1/1,000, although there are significant 116 geographical variations (Labarta, Arriba People with pure gonadal dysgenesis, Area of Citizen Rights, i Ferrández, 2011). The most common 46,XX (Swyer syndrome) have gonads Participation and Transparency cause of congenital adrenal hyperpla- that are neither testes nor ovaries.

An analysis of the different sia is a deficiency of 21-hydroxylase . They present rudimentary gonads or realities, positions and The term, congenital adrenal hyperpla- gonadal streaks which do not produce requirements of the intersex / DSD population sia, encompasses a group of enzyme hormones and are extirpated because in Barcelona deficiencies (an enzyme is a protein of the alleged high risk of malignancy. molecule which is capable of catalys- Outward genitals are typically female ing a chemical reaction in the body) in appearance, with a normal vagina, which are responsible for converting fallopian tubes, hypoplastic uterus — cholesterol to cortisol, which leads to which may be underdeveloped—, but a cortisol and aldosterone deficiency with less development of secondary and to an excess of androgens which sexual characteristics. causes the virilisation of XX foetuses in the uterus. It presents a wide range of Turner syndrome (45,X and 45,X mosai- phenotypes, and the degree of virilisa- cism / 46,XX) is considered an anomaly tion is assessed using the Prader scale of sex differentiation through abnor- (1954) divided into five stages. There- malities in the sex chromosomes (Audí fore, in medical terms for example, Parera et al., 2012) and is characterised a girl with CAH-P1 has a mildly large by primary hypogonadism, short stat- clitoris (hypertrophy), with CAH-P3 she ure and, much less commonly, renal has atypical genitals (a clitoris which and heart malformations. resembles a small penis) and with CAH-P5, she has typical male genitals. In cases of Swyer and Turner syndrome, In all cases, menstruation is absent or puberty is brought about through the irregular, but it can be regulated with administration of oestrogens, and treatments to reduce the androgen menstruation using a combination of levels (Izquierdo and Avellana, 2003; oestrogen and progesterone (López Alba et al., 2009; Donohone, Poth and Siguero, 1997; Capito, 2010). There is a Speiser, 2010; White, 2011). There is a potential for fertility through assisted potential for fertility. reproduction techniques, embryo transfer and birth via caesarean. Mayer-Rokitansky-Küster- Klinefelter syndrome and Hauser Syndrome (MRKH) variants

In Mayer-Rokitansky-Küster-Hauser This is considered an anomaly of sex Syndrome or, in its abbreviated from, differentiation through abnormalities MRKH —which are the initials of the in the sex chromosomes (Audí Parera names of the four doctors who defined et al., 2012). It is relatively common — and classified it —the estimated inci- indications show an incidence of one dence is 1 in every 4,000-5,000 women man in every 500 (Conway, 2013) The (Edmonds, 2000, 2001). It occurs during karyotype 47,XXY is the most predom- the foetal gestation period due to the inant, although other variations are lack of development of the Müllerian included, such as XXXY or XXXX. Many ducts, from which the female repro- classifications hesitate to incorporate ductive system develops: tubes, uterus, it as a form of intersex (Audí Parera et 117 cervix and vagina. The vagina and al., 2012), since the affected individu- uterus are either absent or very small. als "are of unambiguous sex and their Area of Citizen Rights, Participation and Despite that, the ovaries function nor- anatomy does not present any inter- Transparency mally, meaning that women experience sex features" (German Ethics Council, An analysis of the different normal female development during 2012) ; but it does involve differences realities, positions and requirements of the puberty, except for the absence of of sex development, which are often intersex / DSD population menstruation (primary amenorrhea). treated with hormones (as with Turner in Barcelona This is usually the first symptom, and syndrome). the reason why it is often diagnosed during puberty. It is characterised by the presence of small, firm testicles, the absence of Is not included in medical classifi- sperm during ejaculation and infertil- cations as a form of intersex/DSD, ity. The genitals are not usually atypi- however, the AIS support group cal, but gynecomastia is common from includes this condition under its sup- puberty onwards. The testicles produce port umbrella. In this work, we have a lower than average amount of testos- included the experiences of women terone, which means that individuals with MRKH syndrome and those of are not virilised in the same way as their association, because, in our opin- other men during puberty —growth of ion, the psychosocial problems they facial and body hair, deep voice, growth face are very similar to those of other of penis and testicles. It appears types of intersex/DSD —particularly in that cases of men with Klinefelter regards to androgen insensitivity. are related to the uterus and ovaries (Arana, 2005) In any case, the main problems reported by associations of affected individuals include learning difficulties, developmental delays in speech and language, as well as a unique character profile. (Klinefelter’s Syndrome Association UK, 2004). Hypospadias Hypogonadism

Hypospadias are defined medically as This is a condition where the gonads a congenital malformation when the (—the testes in males or the ovaries opening of the urethra (or, the place in females—) produce little or no hor- where the urine exits the body) is on mones. Girls with hypogonadism will the underside of the penis rather than not menstruate, and it can affect their near the end of it in the distal position height and breast development. If (Diccionari Mèdic [Medical Dictionary], hypogonadism occurs after puberty, 1990). It may be found from the mid- symptoms are described as hot flashes, dle of the penile shaft to the base of loss of body hair, decreased libido or the penis, or even at the junction of the the end of menstruation. In boys it is penis and scrotum. Dominique Salm said that hypogonadism affects muscle defines it as the malpositioning of the development, the growth of facial hair 118 urethral opening in men. (Personal and growing problems. In men symp- Area of Citizen Rights, communication, November 2009) toms are characterised by the growth Participation and Transparency of breasts, loss of body and facial hair,

An analysis of the different loss of muscle mass and sexual prob- realities, positions and lems (via MedlinePlus). requirements of the intersex / DSD population Cryptorchidism in Barcelona This is a condition where one or both testicles has not fully descended through the inguinal canal to the scrotum. AN ANALYSIS OF THE DIFFERENT REALITIES, POSITIONS AND REQUIREMENTS OF THE POPULATION WITH INTERSEX VARIATIONS/DSD (DIFFERENCES OF SEX DEVELOPMENT) IN THE CITY OF BARCELONA

Hypogonadism Beyond the labels that are medically, To become familiar with the people socially and institutionally recognised involved; the individuals, groups (organ- This is a condition where the gonads (intersex, DSD —differences, disorders isations or peer support groups for (—the testes in males or the ovaries or anomalies of sex development—, androgen insensitivity syndrome, Swyer in females—) produce little or no hor- etc.), the daily life of these people syndrome, congenital adrenal hyper- mones. Girls with hypogonadism will whose sexual characteristics (chro- plasia, Turner syndrome, Klinefelter not menstruate, and it can affect their mosomes, gonads, genitals, hormones, syndrome, MRKH syndrome, etc.) and height and breast development. If etc.) present different degrees of varia- the professional experts in the field in hypogonadism occurs after puberty, tion from the standard, regularly endure the city of Barcelona. We want to know symptoms are described as hot flashes, difficulties, obstacles and even vio- which problems they come up against, loss of body hair, decreased libido or lence at a social, family and/or health their various stances, and above all the end of menstruation. In boys it is level. Therefore, the political intent is to what their proposals are for change. said that hypogonadism affects muscle eradicate the ignorance, taboo, stigma Once the mapping has been carried out, development, the growth of facial hair and discrimination that surround these we will examine the role that Barcelona 119 and growing problems. In men symp- people and their families, by imple- City Council’s array of public policies toms are characterised by the growth menting policies that meet their needs can take on to promote, defend and Area of Citizen Rights, Participation and of breasts, loss of body and facial hair, and demands. The Councillor’s Office guarantee the citizen rights of these Transparency loss of muscle mass and sexual prob- for Feminism and LGBTI of Barcelona individuals, based on the powers of the An analysis of the different lems (via MedlinePlus). City Council has embarked on the first local government, and by coordinating realities, positions and requirements of the phase of an investigation which aims the policies of different areas or sectors intersex / DSD population to assess this reality in Barcelona. with respect to this group. in Barcelona AN ANALYSIS OF INTERSEX SITUATIONS

GENERAL PROBLEMS/NEEDS/ (SOCIODEMOGRAPHICS): REQUIREMENTS

• Age • Medical care

• Sex »»Accessibility of medical services

• Place of origin and place of residence »»Communication between professionals and patients-family. • Sexual-affective situation »»Health needs / requirements • Cultural factors / religious beliefs • Social / family • Relationship with intersex (patient, 120 parent) »»Abuse / harassment Area of Citizen Rights, Participation and Transparency • Diagnosis and degree of »»Involvement in the family

An analysis of the different medicalisation / degree of chronicity environment realities, positions and and the treatment for this requirements of the intersex / DSD population »»Sport in Barcelona • Education

»»Professional training

»»School

»»Society

• Employment

»»Discrimination - demands

• Regulation/Legislation:

»»Legal constraints (registration, administration, joining public bodies, marriage)

»» Fundamental rights laws PARTICIPATION IN GROUPS / ASSOCIATIONS POLITICAL COMMITMENT: • Main problems / obstacles • Belonging to a rights defence / limitations (framework, organisation or support group for volunteering...) individuals with intersex/DSD. • Main requests • Which organisations for individuals with intersex/DSD are you aware of? • Challenges

• Could we say that an intersex community or group exists? REQUESTS TO INSTITUTIONS • Do you think it is possible to create 121 alliances between them when it • In what ways could Barcelona City comes to defining requirements and Council help / collaborate with your Area of Citizen Rights, Participation and promoting legislative, medical and organisation or community Transparency

social change? An analysis of the different • Strategies realities, positions and requirements of the intersex / DSD population • Collaborations in Barcelona

• Incompatibilities AN ANALYSIS OF THE DIFFERENT REALITIES, POSITIONS AND REQUIREMENTS OF THE INTERSEX/ DSD (DIFFERENCES OF SEX DEVELOPMENT) POPULATION IN THE CITY OF BARCELONA

1. Profession:......

2. Practising medical specialisation:......

3. Place of work:......

4. Years in this role:......

122

Area of Citizen Rights, Participation and Transparency 5. Medical coverage provided in your place of work:

An analysis of the different realities, positions and a) Public requirements of the intersex / DSD population in Barcelona b) Private

c) Semi-private

6. Which intersex/DSD conditions/syndromes do you have experience in (include years of experience in each one):

......

7. Individuals/patients that are treated in your place of work:

a) Adults with intersex conditions/DSD.

b) Relatives

c) Others: 8. Areas of treatment or support provided to these individuals (give as much detail as possible for each case):

a) Gynaecology:......

b) Paediatrics:......

c) Endocrinology:......

d) Paediatric endocrinology:......

e) Urology:......

f) Geneticist:...... 123

g) Psychology:...... Area of Citizen Rights, Participation and Transparency

h) Psychiatry:...... An analysis of the different realities, positions and requirements of the i) Sexology:...... intersex / DSD population in Barcelona j) Other:......

9. Is there a multidisciplinary team established in the medical centre where you work which is available to attend to births or cases of intersex/DSD (differences of sex development)?

a) Yes

b) No

c) DN / NA

10. Has an individual unit been formed in your medical centre where specific intersex/DSD cases are catered for?

a) Yes

b) No

c) DN / NA 11. Problems, needs and/or demands received from adults with intersex variations/ DSD (specify the syndrome if there are differences and the person's kinship or relationship to the condition). In the following areas:

a) Medical care:......

b) Family:......

c) Social:......

d) Education:......

e) Employment:......

124 f) Legislation/Legal:...... Area of Citizen Rights, Participation and Transparency g) Others:......

An analysis of the different realities, positions and requirements of the intersex / DSD population in Barcelona 12. Problems, needs and/or demands received from parents and/or relatives of adults with intersex variations/DSD (specify the syndrome if there are differences and the person's kinship or relationship to the condition). In the following areas:

a) Medical care:......

b) Family:......

c) Social:......

d) Education:......

e) Employment:......

f) Regulation/Legislation:......

g) Others:...... 13. What are the main problems/obstacles/limitations that you face as a care professional in these cases?

......

125

14. What do you think your priorities would be in terms of improving care or resolving Area of Citizen Rights, Participation and these situations? Transparency

An analysis of the different ...... realities, positions and requirements of the intersex / DSD population ...... in Barcelona

......

15. In what way do you think you can help or collaborate with Barcelona City Council to improve the care and quality of life for these individuals and their families?

a) Institutional resources:......

b) Strategies:......

c) Collaborations:......

d) Others:...... 126

Area of Citizen Rights, Participation and Transparency

An analysis of the different realities, positions and requirements of the intersex / DSD population in Barcelona

BCN An analysis of the different realities, positions and requirements of the intersex / DSD population (differences of sex development) in Barcelona