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Living with intersex/DSD: An exploratory study of the social situation of persons with intersex/DSD

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  • Rutgers, Utrecht

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Original title: Leven met intersekse/DSD (published June 18, 2014) One of the first questions asked when a baby is born is whether it is a boy or a girl. The answer to this question is almost always clear and unambiguous, but not always. Intersex/DSD is an umbrella term used to describe various congenital conditions in which the development of sex differs from what medical professionals generally understand to be ‘male’ or ‘female’. The differences may be chromosomal, gonadal or anatomical. There is growing international political attention for the position of people with intersex/DSD. At the same time, there is as yet little solid, research-based knowledge. This exploratory study documents what is currently known about the social situation of people with intersex/DSD in the Netherlands and what problems they may encounter in this regard. This exploratory study was carried out at the request of the Emancipation department of the Dutch Ministry of Education, Culture and Science.
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Living with intersex/
Living with intersex/
An exploratory study of the social situation
of persons with intersex/
Jantine van Lisdonk
Netherlands Institute for Social Research | 
The Hague, August 2014
The Netherlands Institute for Social Research |  was established by Royal Decree of March 30, 197 3
with the following terms of reference:
a to carr y out research designed to produce a coherent picture of the state of social and cultural
welfare in the Netherlands and likely developments in this area;
b to contribute to the appropriate selection of policy objectives and to provide an assessment of the
advantages and disadvant ages of the various means of achieving those ends;
c to s eek information on the way in which interdepartmental policy on social and cultural welfare is
implemented with a view to assessing its implementation.
The work of the Netherlands Institute for Social Research focuses especially on problems coming
under the responsibility of more than one Ministr y. As Coordinating Minister for social and cultural
welfare, the Minister for Health, Welfare and Sport is responsible for the policies pursued by the
Netherlands Institute for Social Research. With regard to the main lines of such policies the Minister
consults the Ministers of General Aairs; Security and Justice; the Interior and Kingdom Relations;
Education, Culture and Science; Finance; Infrastructure and the Environment; Economic Aairs,
Agriculture and Innovation; and Social Aairs and Employment.
Distribution out side the Netherlands and Belgium : Transaction Publishers, New Bruns wick ()
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© Netherlands Institute for Social Research | , The Hague 2014
 publication 2014-23
Layout and design: Textcetera, The Hague
Translated from the Dutch: Julian Ross, Carlisle, 
Cover design: Bureau Stijlzorg , Utrecht
Cover illustration: © Ien van Laanen, 2014
 978 90 377 0717 5
 740

5
Contents
Foreword 
Summary 
 Introduction
. Int e r s ex /  unknown among the general public
. Intersex/: an emancipation issue? 
. Design and implementation of exploratory study 
. Structure of this report 
No t es 
What is intersex/? Types, terminology and prevalence 
. Types of intersex/: a medical explanation 
. Sensitivities surrounding terminology: intersex and/or  
. Denitions 
. Dierences between intersex/ and transgender persons and sexual
orientation 
. Prevalence of intersex/ 
Notes 
Personal experiences of intersex/ 
. The discovery and the message 
. The medical side: experience of treatments 
. Self-acceptance of a chronic condition and (sometimes) infertility 
. Self-image as a woman or man 
. Access to good information and support 
. Health and well-being 
Notes 
The social environment: openness, treatment by others and
participation 
. Lack of openness 
. Forming relationships and the desire for children 
. Social treatment: ignorance, embarrassment and lack of
understanding, but lile perceived discrimination 
. Participation in education, work and leisure activities 
. Importance of contact with others with intersex/ and
organisation-building 
. Conclusion
Notes 
6
living with intersex /dsd
Concluding discussion 
. Perceptions and visibility 
. Medical practice: need for more knowledge, sensitivity and
views on sex 
. Gaps in knowledge regarding social situation 
. Pointers for policy development 
Notes 
Appendix A Exploration of scope for quantitative research 
Appendix B Prevalence table for intersex/ 
Appendix C Aention of organisations for human rights issues in
relation to intersex/ 
Notes 
References 
Publications of the Netherlands Institute for Social Research |  in English 

7
Foreword
It is a tradition in many countries, including the Netherlands, to take a gi for a newborn
baby. In the Netherlands, the gi oen indicates the sex of the baby: pink for a girl, blue
for a boy. Uncommonly, it is not immediately clear what the sex of a baby is, or it turns
out later that their sex development has proceeded differently from what is usual. There
are many variations of this. The illustration on the frontispiece shows a few examples:
boys with an extra X chromosome; girls with  chromosomes; or babies whose sex at
birth is difficult to establish. Intersex/, as this phenomenon is known, can be related
to chromosome variations, anatomy or the gonads.
In the light of the growing international political aention for human rights issues in re-
lation to intersex/, the Dutch Minister of Education, Culture and Science announced
in an emancipation policy memorandum for the period 2013-2016 (Hoofdlijnenbrief
Emancipatiebeleid 2013-2016) that intersex was being considered as a possible focus area for
policy ( 2012/2013). To date, the knowledge gained from research is limited mainly to
insights obtained from a human rights or medical perspective. Lile is currently known
about the problems experienced by people with different types of intersex/ and
precisely what issues they encounter in their lives. The Emancipation department at the
Ministry of Education, Culture and Science asked the Netherlands Institute for Social
Research| to document what is currently known about the social situation of people
with intersex/. Such a publicly funded study is unique. The study was limited in
scope and exploratory in nature.
All those who contributed to the study on the basis of their personal or professional
experience and expertise by taking part in interviews and discussions did so with a
remarkable degree of engagement. I would like to thank everyone sincerely for their
openness and willingness to share their most personal experiences and life lessons.
This demonstrates the need for recognition and illustrates the importance of this is-
sue. The author wishes to thank the professional experts for their helpful comments on
the sections of this report that are medical in nature, and also Joost Kappelhof for his
important contribution to Appendix A. Great thanks are also due to the members of the
reading commiees and other colleagues for their commitment and valuable comments.
Prof. Kim Puers
Director, Netherlands Institute for Social Research | 

9
Summary
Intersex/ is an umbrella term used to describe various congenital conditions
in which the development of sex differs from what medical professionals generally
understand to be ‘male’ or ‘female’. The differences may be chromosomal, gonadal or
anatomical.
It is not so much the person’s perception of their own sex that is the issue here; people
with a type of intersex/ almost always feel that they are male or female.
In the interviews we conducted for this study, it quickly emerged that the terminology
is a highly sensitive area. There is a wide difference between medical professionals on
the one hand and human rights organisations and advocates on the other. In this report
we use the term ‘intersex/’. The term ‘intersex’ is mainly used by human rights or-
ganisations and advocates, and is also the usual term used in the political domain. ,
standing for disorders of sex development, is generally the preferred term among medical
professionals. An alternative definition of  is differences of sex development; that term is
preferred by people who consider the word ‘disorders’ to be pejorative. In general, inter-
sexuality and hermaphroditism are now regarded as outdated and pejorative terms.
Intersex/ from the perspective of social situation
Aention for intersex  was for a long time largely confined to medical circles. How-
ever, aention for intersex/ is today growing internationally in the context of the
protection of human rights, embracing issues of self-determination and physical integ-
rity in relation to genital operations and irreversible medical interventions performed
on children. At the same time, there is lile solid, research-based knowledge, and it is
unclear what impact intersex/ has on the social situation of those affected.
At the request of the Emancipation department of the Dutch Ministr y of Education,
Culture and Science, the Netherlands Institute for Social Research |  carried out an
exploratory study in order to gain a greater insight into the social situation of people
with intersex/. There were two central research questions:
1 What characterises the social situation of people with intersex/ and what prob-
lems do they experience in their social situation?
2 How could a reliable quantitative study of the social situation of people with intersex/
 be carried out in the Netherlands?
‘Social situation’ is a broad term; in this report, we distinguish between the personal
experience of intersex/ and the impact of intersex/ on a person’s social life.
This is an exploratory study with limited scope, based on national and international
literature; seven in-depth interviews with persons with intersex/; a focus group
discussion with people having various types of intersex/ who are active in patient or
advocacy groups; eight interviews with professional experts; and several meetings and
symposia. The persons interviewed with intersex/ constitute a specific group, since
10
living with intersex /dsd
all of them have been through medical procedures and are or have been in contact with
patient organisations.
Variation, prevalence, medical interventions and terminology
There is considerable variation in the conditions that are covered by the term ‘intersex/
. What they have in common is that they are congenital and incurable. There are
dozens of conditions, some of which occur in many variants. Conditions may be dis-
covered at different moments. Some of them may be discovered during pregnancy, for
example in the case of chromosome variations. If the intersex/ affects the external
genitalia, the condition is generally identified at birth. Where there are consequences for
the internal sex organs, this is frequently only discovered during puberty or adulthood.
Conditions sometimes come to light when a woman is unable to become pregnant. It is
also possible for people not to know that they have an intersex/ condition, for exam-
ple because their medical complaints are limited or a link is not made to intersex/.
The nature and severity of the medical consequences also var y greatly. The medical
complaints may be so minor that medical treatment is never required, whereas others
with the condition face a whole lifetime of medical interventions and monitoring. Those
interventions may include operations on the internal or external sex organs, hormone
therapy or treatment of additional physical complaints. Operations are sometimes
needed because other wise there is a danger to a child’s life; operations are also fre-
quently carried out in the case of ambiguous genitalia or where the genitals are incom-
pletely formed or developed. Many t ypes of intersex/ have an impact on fertility, but
advancing medical techniques are increasing the possibilities for fulfilling the desire to
have children, for example through surrogacy, egg cell donation or artificial insemina-
tion.
It is difficult to indicate how oen intersex/ occurs in the Netherlands. This depends
among other things on the classification chosen and the prevalences applied per condi-
tion. In some cases, reliable prevalences are simply not available. If we take the most
generally accepted classification among medical professionals, non-medical researchers
and interest groups as a starting point, and if we also as far as possible start from the
available condition-specific prevalences in the Netherlands, the best estimate at this
point in time is that there are roughly 80,000 people in the Netherlands with a type of
intersex/. That number includes people who have never received medical treatment
for their condition and people who are not aware that they have a type of intersex/.
Personal experiences
It emerged from the interviews with persons with intersex/ that many of them had
(and sometimes still have) difficulty in accepting their condition. For all those inter-
viewed, receiving the news of their condition was a very distressing event; coming to
terms with having a chronic condition and its physical consequences can be difficult.
Types of intersex/ which affect the person’s external appearance can also impact
on their self-image as a man or woman. The persons interviewed know perfectly well
whether they feel male or female, but sometimes wonder whether others see them
as a complete man or woman. Infertility can also lead to great sadness, both for the

11
individual concerned and for those close to them. Parents with a child who has a type of
intersex/ also have to go through a process of self-acceptance and coming to terms
with the reality. Finally, intersex/ can have an impact on health and well-being
because of condition-specific aspects (including physical complaints, problems with
physical appearance), medical inter ventions and social treatment (which can exacerbate
feelings of being different, somehow inferior and unhealthy) and actual or anticipated
reactions from others in societ y.
Intersex/ and the social environment
Most persons with intersex/ who were interviewed find it difficult to be open about
their condition. In practice, they decide to be cautious about whom they tell and what
they tell them. They do not always reveal everything and they sometimes adapt or avoid
certain situations in order to ensure that their condition remains hidden. Their condi-
tion oen has (or has had) an impact on their ability to form relationships and on their
experience of sexuality. They may for example feel uncertainty about their appearance
or their self-image as a man or woman, reticence in embarking on a relationship, fear of
rejection as a partner and limitations in their sexual capabilities. Discovering that they
may be infertile can also be difficult to come to terms with and impact on their abilit y to
have children.
People with intersex/ may have feelings of shame and a fear of negative reactions in
relation to those around them. Those reactions appear to stem mainly from ignorance,
embarrassment and an inabilit y to empathise. The interviewees with intersex/ seem
able to understand such reactions to an extent and generally do not associate them
directly with non-acceptance or discrimination, though they can cause them to feel
different, lonely and misunderstood. They are much less accepting of negative reactions
and ignorance from the medical profession, because they expect medical professionals
to have adequate knowledge and expertise and to treat them with respect.
This study shows that physical limitations and reduced psychosocial well-being can have
an adverse impact on participation in education, work and leisure activ ities. Gaining an
impression of how extensive that impact is would require additional research. People
appear to be especially vulnerable during puberty, because this is a time when sexuality,
intimacy and appearance are sensitive subjects. However, our study is based on the expe-
riences of adults who recount their experiences in puberty retrospectively, which means
that any conclusions about this phase of life need to be treated with some caution.
The experiences of children, adolescents and parents are not covered in this study.
All inter viewees with intersex/ reported that contact with others with a similar
condition is important in enabling them to share experiences and information based on
a sense of equality, or not feeling isolated or different. The need for this contact is some-
times temporary. In the Netherlands, people with intersex/ organise themselves
into separate patient organisations for each condition. There is currently no umbrella
organisation in the Netherlands focusing on intersex persons in general or persons with
intersex/ who do not regard themselves as patients.
12
living with intersex /dsd
Pointers for policy development
Intersex/: lack of group identity and relationship with 
Interest groups representing lesbian, gay, bisexual and transgender persons (),
as well as human rights organisations, are increasingly adding the I of ‘intersex’ to the
abbreviation . This implies that there are clear communalities between people with
an intersex condition and people who are gay, lesbian, bisexual or transgender. What
they have in common is that they encounter normativity and preconceptions in relation
to sex, gender and sexuality. An alliance between  and ‘I’ is therefore understand-
able. However, this study shows that such an alliance is a sensitive subject for persons
with intersex/. In the first place, there is virtually no shared identity or community
based on intersex/. These persons generally do not feel part of a group and do not
wish to be seen as a separate category, but rather as men and women. In addition, most
of the interviewees in this study prefer to distance themselves from  persons or
feel they have lile in common with them. They fear that they themselves will also be
viewed in terms of sexual orientation or gender identity, whereas these t wo aspects are
not crucial for them. Persons with intersex/ for whom gender identity and gender
expression are more ambiguous may feel some connection with  persons, but the
information on this is limited.
It is important that any development of policy on intersex/ takes account of these
sensitivities and the lack of a group identity on the part of those with these conditions.
We would also note that in a policy approach focusing on impediments that have their
origin in normativity, sensitivities and perceptions in relation to sex, gender and sexual-
ity, there are clear correspondences with women’s emancipation and  emancipa-
tion.
Better picture of social situation through research
This exploratory study identifies a number of themes that are relevant for people’s social
situation, but there are still gaps in the knowledge. If there is an interest in develop-
ing policy in this field, it is important to increase that knowledge. Among other things,
large-scale quantitative research could be carried out aimed at obtaining a national
picture of the social situation of persons with intersex/. The opportunities and dif-
ficulties have been explored in this study. This study devoted lile aention to questions
of medical ethics, whereas this can be relevant for policy development.
Fostering resilience through organisations
The persons with intersex/ who were interviewed for the study recounted that they
had not found it easy to obtain good information and support. Self-organisation in the
form of condition-specific patient organisations appears to play an important role in
fostering the resilience of persons with intersex/, as a means of finding informa-
tion, meeting others and learning to come to terms with their own condition and to deal
with those around them. On a practical level, some patient organisations are not easily
able to guarantee their continuity and the availability of activities. A self-organised body
for persons who identify themselves as intersex or an activist movement has not been

13
identified in the Netherlands (there are examples of both in other countries). Whether
or not there is a need for such organisations in the Netherlands was not covered in this
stud y.
Good information is an important condition for resilience. Although the Internet is a
source of information, it is difficult to separate the good information from the bad, and
the information is sometimes also pejorative and sensationalist. It is therefore no sur-
prise that there is an expressed need for a website containing good information about
the medical and social aspects of types of intersex/.
Finally, most of those interviewed have or have had a need for psychosocial support.
For various reasons, they have not always received this.
Improving knowledge and sensitivity among medical professionals
There have been many changes in the medical world in recent decades, and develop-
ments in this field are rapid. One result of this is that previous practices such as secrecy
and deliberately withholding information or providing false information are no longer
standard practice. Within specialist medical centres, full disclosure is now the norm.
Despite these developments, it became clear in this study that there is generally room for
improvement in the knowledge, awareness and sensitivity of non-specialist medical pro-
fessionals. Since most persons with intersex/ initially come into contact with non-
specialists, this suggests a need to devote aention to intersex/ in basic medical
training and training for the care professions. The drive to improve knowledge moreover
needs to focus on both the medical and social aspects of intersex/, sex and sexuality.
Another reason for raising the sensitivity of professionals is that being treated with
respect is likely to foster a positive experience of medical inter vention. Intersex/
is surrounded by sensitivities in relation to sex and sometimes external appearance,
infertility and sexuality, and medical professionals need to be more aware of this.
Provision of adequate information by medical professionals to persons with intersex/
 is also something that warrants aention; the interviewees with intersex/ felt
they had received inadequate information from doctors and were le with many ques-
tions. They oen use the Internet and patient organisations as supplementary sources of
information.
Finally, non-medical researchers and advocates argue that medical professionals need to
devote more aention to views on a person’s sex and to the framing of intersex/ as
a medical problem. Medical intervention in the event of ambiguous genitalia, for exam-
ple, confirms the norm of a person’s sex as being a clear-cut twofold division. What is
regarded as ‘normal sex’ within the medical profession is always based on biological and
social criteria, neither of which are fixed.
Perceptions, acknowledgement, invisibility and awareness-raising
An important finding of this exploratory study is that there is a need for medical and
social acknowledgement. There is a great deal of ignorance about intersex/. The per-
sons with intersex/ who were inter viewed for this study come up against this
ignorance and, with some conditions, against the perception of a person’s sex as a sim-
ple dichotomy in which the distinction male/female is taken for granted as the norm (sex
14
living with intersex /dsd
normativity). Intersex/ differs from that norm. There are taboos and sensitivities
here because it impinges on issues in relation to sex and sexuality.
Persons w ith intersex/ generally do not feel the need to question the male/
female distinction, and in most cases prefer to be seen as a complete man or woman.
This means that intersex/ is not very visible in society. Whether more visibility would
be beneficial or should be a goal is a complex maer. Advocates believe that striving for
this will have a positive effect because it could lead to less ignorance, more nuanced
perceptions, greater familiarity with the condition and the breaking of taboos. Others
fear that greater visibility could lead to more stigmatisation. In addition, greater vis-
ibility and awareness in society could lead to intersex/ being seen as a distinct social
category or group, whereas most of those interviewed do not want this.
Promoting sharing of knowledge
Finally, this study showed that there are wide differences between the various par-
ties and organisations involved, such as medical professionals, advocates and patient
organisations, in terms of their perspectives, views and use of terminology in relation to
intersex/. Those differences encompass language usage, type of knowledge, relevant
themes and the way in which intersex/ is viewed. The Netherlands Network Intersex/
 (Nederlands Netwerk Intersekse/, ), a new intersex/ advocac y group
that was set up last year, has organised several meetings in which various organisations
have participated. This sharing of perspectives and information between parties and
organisations, whatever form it takes, has proved to be useful.

15
1 Introduction
1.1 Intersex/ unknown among the general public
‘Is it a boy or a girl?’ That is oen one of the first questions asked when a new baby is
born. The answer is usually clear, but it occasionally happens that doctors are unable
to determine the baby’s sex immediately, or that they have doubts. The development
of secondary sex characteristics in pubert y can also be incomplete or not take place,
and there may be a different chromosome paern from  or . These are examples
which illustrate that a baby’s sex at birth is not always unambiguously ‘male’ or ‘female’.
These people have an intersex condition1 or  (differences/disorders of se x development).
In this report we refer to these conditions using the term ‘intersex/’ (see § 2.1).2
There are many types of intersex/; it is an umbrella term. It can include people
whose external appearance is feminine but who have ambiguous or incompletely devel-
oped internal sex organs. It can also happen that the sex organs are not typically male
or female at birth, or that females have no  chromosomes and males no  chromo-
somes. Some intersex/ conditions are visible to other people, while others are not.
Some conditions are identified prior to or immediately aer birth, while others only
become apparent during pubert y or following investigation when a woman is unable
to become pregnant. People with intersex/ generally do not see themselves as a
‘third gender, but as male or female. The most accurate assessment that can be made at
present is that there are approximately 80,000 people in the Netherlands with a form of
intersex/ (§ 2.5). These people are not always aware of their condition themselves.
Intersex/ is a largely unknown phenomenon among the general public. People who
have never personally come into contact with intersex/ oen think of the term ‘her-
maphrodites’; this is an outdated and pejorative term used to describe people with both
male and female genitalia. Then there is the aention devoted by the media to female
athletes who were banned from participating in the Olympic Games because, according
to medical standards, they were allegedly not completely female. At the end of 2013, a
change in the law in Germany making it legally possible to have an indeterminate sex led
to an appearance on the Dutch  talk show Pauw en Wieman by someone who regards
herself as intersexual. These examples show that intersex/ is not only a physical
condition with medical consequences, but also a social issue which is associated among
other things with pejorative perceptions and possible impediments to social participa-
tion.
The impact of intersex/ varies, and depends on when it is discovered by medical
professionals, how and when people are informed about it, external appearance, the
severit y of any physical complaints and the social treatment of others. Intersex/ is
sometimes established before birth, and a person with intersex/ may spend their
whole lives under medical treatment (possibly with many operations). But there are also
people who will never discover that they have intersex/, because the medical symp-
toms are minor or are not recognised.
16
living with intersex /dsd
What these t ypes of intersex/ have in common is that from a medical perspective
they all point to some variation or ambiguity in sex development. Almost nothing is
known about what impact this has on the social situation of people with intersex/.
There is growing international political aention for this (European Parliament 2014;
European Union 2013; Council of Europe 2013; Méndez, United Nations 2013), but as yet
lile solid knowledge from research. This exploratory study marks a first step towards
gaining a greater understanding of the social situation of people with intersex/.
1.2 Intersex/: an emancipation issue?
For decades, aention for intersex/ has been largely limited to a medical perspec-
tive. Although the emphasis still lies on medical aspects, there is growing aention for
and recognition of the importance of the non-medical aspects (MacKenzie et al. 2009;
Vilain 2006). Human rights organisations and advocates of people with intersex/ are
raising questions about issues such as self-determination and physical integrity in rela-
tion to genital operations and irreversible medical interventions performed on children.
Some organisations and scientists are also raising the more fundamental question of
whether a person’s sex should be interpreted as an absolute dichotomy (male or female),
when intersex/ demonstrates that this is not always clear-cut (Karkazis 2008; Liao &
Boyle 2004b; Van Heesch, forthcoming).
The international aention devoted to intersex/ from a human rights perspective
has recently been stepped up. General human rights organisations such as the United
Nations (Méndez, United Nations 2013) and European organisations such as the Council
of Europe (2013), the European Union (2013) and the European Parliament (2014) have
recently begun focusing on the position of people with intersex/. New legislation
has also come into being in several countries in recent years in relation to sex registra-
tion and antidiscrimination (e.g. Germany, Australia and South Africa).
The Dutch Minister with responsibility for emancipation policy is monitoring interna-
tional developments and in an emancipation policy memorandum tabled in Parliament
for the period 2013-2016 (Hoofdlijnenbrief Ema ncipatiebeleid 2013-2016) announced that the
possibility is being explored of making intersex as a potential policy domain:
Recent publication s and statements have focused on combating discr imination and protecting
physical i ntegrity and s elf-deter mination, because int ersexual people m ay among other things
face unnece ssary medical i ntervention s. In consultation w ith relevant patie nt organisations, I
am explor ing whether there a re societal issu es here and whether th ese have an emancip ation
aspec t. ( 2012/2013)
1.3 Design and implementation of exploratory study
Before the question can be answered of whether including intersex/ within the
emancipation policy is useful and necessar y, it is important to have an understanding of
the problems faced by people with intersex/. What are their lives like and what issues
do they encounter? This exploratory study seeks to answer these questions from the per-
spective of persons with intersex/, with a focus on their social situation. It looks at

17
which problems stem from having an intersex/ condition. Issues relating to human
rights and medical ethics fall outside the scope of this study and are mentioned in the
main text only if inter viewees with intersex/ broached them themselves. A number
of human rights issues are referred to in Appendix C.
‘Social situation’ is a broad term, which among other things embraces social acceptance,
well-being and health, and participation. In this report we distinguish between personal
experiences of intersex/ and social interaction with other people. With regard to
personal experiences, we look at how people with intersex/ experience their condi-
tion (e.g. medical interventions, identification, self-acceptance, self-image as a man or
woman, consequences for health and well-being). As regards social interaction with
others, we look at their openness about their own condition, relationship and family
formation, social treatment of others, perceived acceptance and discrimination, and dif-
ficulties or impediments in participating in education, work and leisure activities.
This study also explores the question of whether there is a need for large-scale quantita-
tive research on the social situation of people with intersex/ and how such research
could be carried out. We identify which problems occur in the social situation of people
with intersex/, but are unable to elucidate to wh at extent these problems occur; that
would require national research involving a large group of people with intersex/.
Such research has never been carried out in the Netherlands. Research among people
with intersex/ from a non-medical perspective is also scarce in other countries
( MacKenzie et al. 2009). Almost nothing is therefore known about how large-scale
quantitative research on the social situation of people with intersex/ might be
carried out and what the focus areas, challenges and opportunities might be.
Summarising, the following two questions are central to this exploratory study:
1 What characterises the social situation of people with intersex/ and what prob-
lems do they experience in their social situation?
2 How could a reliable quantitative study of the social situation of people with intersex/
 be carried out in the Netherlands?
To answer these two research questions, the study draws on four information sources: a
national and international literature review; interviews with persons with intersex/;
interviews with professionals working in the field of intersex/; and meetings and
symposia. However, this study is limited in scope and is no more than an exploration
of the field. This means that the literature review is not exhaustive and that the number
of interviews and discussions, while it provides an insight into the identified themes,
does not provide an in-depth picture of aspects such as differences between groups.
Moreover, information was only obtained about people who are aware of their condi-
tion.
The literature review covers social scientific studies, medical science literature (to gain
an insight into medical issues and prevalences), websites of Dutch patient organisations
and websites and reports of interest groups (in particular the Netherlands Net work Inter-
sex/ (),  (Dutch lesbian, gay, bisexual, transgender organisation) and 
(International Lesbian, Gay, Bisexual, Trans and Intersex Association)).
18
living with intersex /dsd
In-depth face-to-face interviews were held with seven persons with various conditions
that are classified as intersex/. All persons interviewed have at some point received
treatment in a medical centre because of their condition and are or have been in contact
with a patient organisation or support group. Most of them are or have also been active
in patient organisations and therefore have some insight into the experiences of others
with their condition. In addition, a focus group discussion was held involving six people
with various types of intersex/ who are active in patient organisations or interest
groups. They talked about their own experiences and those of people in their organisa-
tions or in their social net works. The interviewees can be regarded as the ‘vanguard’.
This group is selective because not everyone with intersex/ undergoes medical
treatment or has (had) contact with patient organisations. This needs to be taken into
account when interpreting the findings.
Eight interviews were held with professional experts, including a social science researcher,
representatives of the , medical professionals and psychologists. A number of
informal discussions also took place.
A number of international and national symposia were aended for the purposes of the
study. In addition, four meetings were organised by the  in 2013 and 2014 in col-
laboration with the Ministry of Education, Culture and Science, which were aended by
representatives of patient organisations, expertise centres, the , researchers and
other stakeholders.3 The organisation of these meetings was prompted by the founding
of the  in the spring of 2013. This organisation campaigns for the equal treatment,
emancipation, visibility and interests of people with intersex/. It is the first organi-
sation to focus specifically on promoting the interests of people with intersex/ in
the Netherlands.
Given the social sensitivity of intersex/, those who participated in the inter views
were guaranteed anonymity. Names were changed; the only interviewees mentioned by
name are professional experts or organisations that wished to be named.
1.4 Structure of this report
Chapters 2, 3 and 4 of this report address the first research question about social situ-
ation. The second research question is highly technical in nature and is therefore
discussed (at length) in Appendix A.
Since intersex/ is an unknown phenomenon for many people, chapter 2 first pre-
sents a medical explanation of the condition, following which we describe some of the
best-known t ypes of intersex/. We also explain the terminology and definitions
we have used and look in more depth at how frequently intersex/ occurs. Chapter 3
discusses the relevant themes in relation to personal experience of intersex/, while
chapter 4 explores the consequences for social interaction with others. In order to bring
the persons concerned to life, boxes in chapters 3 and 4 home in on specific life experi-
ences or problems faced by the interviewees.
Appendix A discusses the second research question, namely how reliable quantita-
tive research on the social situation of people with intersex/ could be carried out.
Aer exploring the utility of and need for such research, we suggest a number of themes

19
and address methodological questions. We then outline a number of specific possibili-
ties and describe the advantages and disadvantages of each.
In the concluding discussion we summarise the findings on the two research questions.
The role of perceptions, the dilemma of visibility and focus areas for the medical profes-
sion are also covered here. We also show where the gaps in knowledge are and whether
and how quantitative research could contribute to filling them. Finally, we interpret the
findings of this exploratory study in the light of potential policy development.
Comparisons are occasionally made in this report with former or current emancipation
processes in relation to inequality between men and women and the acceptance of 
persons (lesbian, gay, bisexual and transgender persons). This enables us to draw paral-
lels with the emancipation of other groups, or to highlight differences.
One outcome of this explorator y study is that there are many perspectives from which
answers can be sought to the research questions There is wide variation in people’s expe-
riences with and views on intersex/. Certain themes proved to be highly relevant for
specific t ypes of intersex/ but to play no role whatsoever for other conditions. There
was also frequently wide divergence in the perspectives of persons with intersex/,
patient organisations, interest groups, researchers and medical professionals. We have
aempted to strike a balance in portraying those perspectives.
Notes
1 In the Netherlands t he term ‘condition’ is use d by persons wit h intersex/, advocates and medical
profess ionals. It is more neutr al than ‘disorder’ or ‘abnormality’ (see chapter 2). In other count ries,
the ter m ‘condition’ is generally not used by ac tivists and human rights org anisations, be cause they
assoc iate it with a medical approach. The situat ion appears to be different in the Netherlands, where
the ter m ‘condition’ (conditie) receives more support.
2 Where referenc e is made to other author s or organisations, we have a s far as possible use d their
terminology.
3 Those present were infor med about national and intern ational development s in the field of human
right s and medical ethic s. Knowledge of and e xperiences w ith various topics were al so shared.
20
living with intersex /dsd
2 What is intersex/? Types, terminology and
prevalence
In order to gain a beer understanding of the problems that may occur in the social situ-
ation of people with intersex/, it is important to be clear about what intersex/
is. This chapter begins with a medical explanation and a description of the best-known
types of intersex/. This is followed by a discussion of terminology, definitions and
demarcation of the target group. There are sensitivities here, and we highlight these
briefly because they show how people who are personally or professionally involved
with intersex/ view this phenomenon. We then show that intersex/ is linked to
a person’s sex and describe the relationship with sexuality, gender identity and sexual
orientation. Finally, we aempt to answer the question of how frequently intersex/
occurs.
2.1 Types of intersex/: a medical explanation
Although the medical approach is not central to this study, Box 2.1 presents a concise
medical explanation of ‘normal’ sex development in order to illustrate how many physi-
cal processes underlie that development. This makes it possible to place different types
of intersex/ more into context. Some processes are presented in simplified form.
Box 2.1 Brief medical exp lanation of normal sex de velopment
Sex development begins at conception, when the genetic material from an ovum merges
with the genetic material from a sperm cell and a new individual begins to develop. The se x
chromosomes X and Y are important in sex development. The gonads develop during the rst
six week s of the embryo’s development. Initially, they are the same in  and  individuals;
under normal circumstances, these gonads develop bet ween week seven and week ten into
testes or testicles in  individuals, which produce androgens (‘male’ hormones). If the foetus
has  chromosomes, the gonads almost always develop into ovaries which produce oestro-
gen (‘female’ hormones). Once the testes have developed, they start producing testosterone
and anti-mullerian hormone ().  suppresses the development of female internal
sex organs, i.e. the fallopian tubes, uterus and upper portion of the vagina. If the testes are
functioning properly and  is present, the development of the male internal sex organs
is initiated: epidymides, ductus deferens and seminal vesicles. Development of the external
genitals takes place between week nine and week 14 . Testosterone stimulates the growth of a
penis and scrotum. If no testosterone is produced, or if it cannot f unction for some reason, the
external genital organ generally develops into a vagina. The sex hormones testosterone and
oestrogen initiate the development of se condary sex characteristic s during pubert y. The pro-
duction of testosterone by the testes causes the voice to break and the development of body
hair and more muscle development. Oestrogen, which is produced by the ovaries, stimulate s
the development of breasts, rounded hips and menstruation. Hormones also have an inuence
on behaviour and psychologic al functioning in puberty and in later stages of life.
   /? ,    
21
The description in Box 2.1 makes clear that sex development is determined by a combi-
nation of chromosomes, gonads (testes or ovaries) and the production and processing
of hormones. If one of these processes develops in a different way, this can lead to a
type of intersex/. These are congenital conditions for which there is no cure. There
are dozens of t ypes of intersex/, oen with many variations, which are highly di-
verse in terms of how and when they are discovered, the type of medical inter ventions
performed and the medical and social consequences. In general, intersex/ which
affects the external sex organs is discovered at birth. Types which have affected the in-
ternal sex organs are oen only discovered during pubert y or adulthood. Surgery may
be performed in the case of ambiguous genitals. Operations are sometimes medically
necessary, because otherwise the children concerned would not survive. There is a wide
diversity of types of intersex/. Here we describe a few of the best-known types.
46,-
46,- covers several t ypes of intersex/, including androgen insensitivity syn-
drome () and gonadal dysgenesis. People with  have  chromosomes and are
partially or completely insensitive to androgen. They have no ovaries or uterus. They may
have lile or no underarm hair, acne or body odour, and they may have pale nipples. 
occurs in different gradations, and a distinction is made bet ween  (complete) and
 (partial). People with  almost always feel themselves to be women and their
external genitals look female.  mostly comes to light during investigations as to
why a girl is not menstruating during puberty. It is sometimes diagnosed earlier because
of an inguinal hernia or because it is known to run in the family. People with  have
ambiguous external genitalia and this is discovered immediately aer birth. Operations
may be performed on the external sex organs of people with  aer extensive evalu-
ation. These persons are always infertile. Because of the risk of cancer developing in the
internal sex organs, these are sometimes removed. If the gonads are not properly devel-
oped, there may be another type of intersex/, namely complete or partial gonadal
dysgenesis. Partial forms of testosterone biosynthesis defects such as 5alpha -2 and
17bet a -3 also come under 46,-.
Congenital adrenal hyperplasia ()
In the most common form of congenital adrenal hyperplasia (), the adrenal glands
produce too lile cortisol and too much testosterone. In girls, the clitoris begins grow-
ing even before birth and can resemble a small penis, while the labia may be completely
or partially fused together. This can lead to problems in determining the child’s sex.
Girls with this condition oen undergo operations on the external sex organs in early
childhood. These girls display cross-gender (in this case masculine) behaviour more
oen than other girls, but generally still feel themselves to be women. If not treated
properly, the high testosterone levels can later cause girls to develop extensive body hair
and extreme acne. If le untreated, an increase in the ‘masculine’ hormones leads to
early onset of puberty in both girls and boys. Boys with  are oen ultimately smaller
than their peers.
22
living with intersex /dsd
The milder forms of  are discovered in female children at the toddler stage due to the
early onset of puberty, or in later life because of more pronounced hair growth, acne or
menstrual disorders. They are discovered in males due to fertility problems caused by the
slight increase in the ‘masculine’ hormones produced by the adrenal gland. Women with
 can become pregnant and have children, but require careful medication. Narrow-
ness of the vagina or early operations oen means that a Caesarean section is needed for
delivery.
Today,  is included in the neonatal screening test, which means the condition comes
to light earlier than in the past.
Hypospadias
Hypospadias affects boys and means that the external opening of the urethra (urinary
meatus) is not located at the tip of the penis. It may be located anywhere along the
length of the penis or in the scrotum, and the foreskin is usually split. If the opening is
closer to the scrotum, there is a greater chance of a curved penis. The position and shape
of the urethral opening can make it difficult to urinate whilst standing. One or more
operations can make it possible for these boys to pass water whilst standing and enable
ejaculation later in life. The appearance of the penis can also be surgically altered. These
operations are normally carried out at an early age. Medically, it is not always necessary
to treat hypospadias, and the decision to operate is sometimes based mainly on practical
and cosmetic considerations. Boys with hypospadias are fertile. The degree of hypospa-
dias can vary widely, and the more severe forms are classed as .1
 (Mayer-Rokitansky-Küster-Hauser) syndrome2
 occurs only in females. They have  chromosomes and ovaries, but are born
without a (complete) vagina and/or uterus. The external sex organs are present and
these women feel themselves to be women.  is usually discovered during puberty,
because menstruation fails to begin or problems arise with the kidneys. If a (partial)
uterus is present, it is usually removed to relieve the severe abdominal pain caused by
the inability to menstruate. These women are not fertile. Surrogacy is an option.
Klinefelter syndrome
This syndrome, also known as 47,, only affects babies born as boys. They have an
extra X chromosome in addition to the usual 46 chromosomes. The syndrome affects
roughly 1 in 600 or 700 men, making it one of the most common types of intersex/
. Males with this syndrome produce insufficient testosterone, leading to late onset
of puberty and sometimes failure to complete puberty. The penis and testes are rela-
tively small prior to puberty. The consequences of insufficient testosterone production
become apparent during pubert y. Affected boys develop relatively less muscle mass
and the bodily distribution of fat and hair is oen different from most of their peers.
There may be some breast formation. The testes remain underdeveloped in adulthood.
This syndrome may be accompanied by a list of symptoms, including problems with
concentration, memor y, coordination, fatigue, expression of emotions and social
interaction. Those affected rarely display all symptoms and there are wide individual
   /? ,    
23
differences. As a result, Klinefelter syndrome is not always recognised and diagnosed
by doctors. It may be that boys do not go to a doctor because they have few complaints,
or it may be that complaints are not properly diagnosed. Once the diagnosis has been
established, they are oen given testosterone in the form of a gel, injection or capsule.
This sometimes gives them more energy, improves their concentration, gives them more
interest in sex, makes them more assertive, helps them develop muscle mass and alters
the fat distribution around their body. It also reduces the risk of osteoporosis. These
men oen have fertility problems because of the rapid decline in sperm cell production
duri ng pub ert y.
Most boys who grow up with Klinefelter syndrome feel themselves to be men in adult-
hood, though in some cases they begin to feel more feminine or identif y themselves as
women.
Turner syndrome3
Turner syndrome is also known as 45,X. There are mosaic forms of the syndrome where
the person affected has 45,X in some cells and, for example, 46, or 46, in others.
Only females are affected and in all cases they lack all or part of one X chromosome. That
affects the development of ovaries, the production of sex hormones, their height and
physical sexual maturity. Affected girls and women are almost always short in stature.
As this symptom is accompanied by a list of possible symptoms, which almost never all
occur at the same time in one individual, there are wide differences in the medical issues
faced by those affected. What they have in common is that the onset of puberty is gener-
ally not spontaneous and that they usually do not menstruate. This syndrome is oen
identified during pubert y. Other examples of possible symptoms are a wide and/or short
neck, low hairline at the back of the neck, an increased likelihood of heart problems,
kidney, thyroid gland and hearing disorders, and more common incidence of diabetes,
high blood pressure, reduced motor development and deficiencies in spatial awareness
and short-term memor y. Oestrogen may be administered to initiate menstruation and
breast formation. Pregnancy is possible via egg cell donation.
Other chromosome variations
There are other chromosome variations in addition to Klinefelter syndrome and Turner
syndrome, including 47, and 47, . Both these chromosome variations usually go
undetected at birth. Boys with 47, have an extra Y chromosome. In the early years of
life, there is generally nothing unusual. At the end of primar y school age, these boys put
on an extra spurt of growth and oen end up taller than average. Compared with other
boys, they may be somewhat more mobile and active and have a greater chance of having
learning difficulties and delayed emotional development. Males with this condition are
fertile.
A chromosome variation that affects girls is 47,, also referred to as triple-X syn-
drome or Trisomy X. Girls affected may have problems with language or speech, have
socio-emotional problems, be taller than average and have a more negative self-image.
They may be slightly more mobile and active than other girls. They are fertile and have a
slightly higher probability of early menopause.
24
living with intersex /dsd
Both 47, and 47, are oen not diagnosed and no medical inter vention takes
place, either because the condition does not lead to major problems or because
problems are not associated with a chromosome variation. There are also mosaic pat-
terns in which chromosome variations occur only in some cells.
Clearly, the experiences of people with different types of intersex/ vary widely as
regards medical inter vention (operations and hormone treatment) and fertility. People’s
personal experiences are discussed in chapter 3.
What intersex/ makes clear is that a person’s sex is not an absolute dichotomy medi-
cally speaking, even though this is the most widely prevailing view of sex in society. It is
more accurate to imagine a person’s sex as a continuum on which there is a gradation of
medically determined male or female characteristics.
2.2 Sensitivities surrounding terminology: intersex and/or 
It became apparent at an early stage of this exploratory study that the choice of termi-
nology is a crucial issue within this field, and one which played a role in gaining access
to individuals and organisations for this study. Broadly speaking, professionals prefer
the umbrella term intersex or  or some variation of it. There is lively debate among
scientists, advocates and medical professionals, because the term chosen reveals the
perspective from which this group is viewed (Liao & Roen 2014).
, in its most commonly used meaning of disorde rs of sex development, is currently the
most usual term in national and international medical circles (e.g. Callens 2014; Claahs-
en-Van der Grinten et al. 2008; Dessens & Cohen-Keenis 2008; Hughes et al. 2006; Van
der Zwan 2013). Prior to 2006, medical professionals used the term intersex, but later
came to see this as pejorative, partly because of its supposed implication that those
affected were somewhere between male and female, whereas in reality most of them feel
clearly male or female. The publication of the Consensus Statement in 2006 marked the
reaching of a consensus in the international medical world on the use of the term disor-
ders of sex development. This also led to a broad consensus regarding which conditions are
regarded as  as well as the names given to specific conditions henceforth (Hughes
et al. 2006).
However, human rights organisations, advocates and people with intersex/, in par-
ticular, oen object to the use of the term , which they feel places too much empha-
sis on the medical approach (e.g. Karkazis 2008;  2013). The criticism is directed
mainly at the first ‘D’, in the sense of disorders. Not everyone with intersex/ feels
like a patient, and terms such as ‘disorder’ or ‘abnormality’ are regarded as pejorative.
The preferred terms of these organisations are intersex and persons with an intersex
condition (e.g. Agius & Tobler 2012;  2013;  Europe 2013; Karkazis 2008; MacKen-
zie et al. 2009; Council of Europe 2013).4
The lack of consensus on terminology sometimes stands in the way of cooperation
between interest groups, patient organisations and medical professionals.5 In order
to facilitate dialogue with all organisations in the field, some organisations now use
the term  but give it an alternative meaning, namely differences of sex de velopment
   /? ,    
25
(e.g.  2013; Swiss National Advisor y Commission 2012), diverse sex development (Euro -
 2014; Liao & Simmonds 2014), divergence of sex developme nt (Reis 2007) or an alternative
form such as variation of se x development (e.g. Van Heesch (forthcoming);  2013; Swiss
National Advisory Commission 2012).
As stated in chapter 1, in this exploratory study we use the terms ‘intersex/’ and ‘per-
sons with intersex/’.6 These terms have been chosen in order to indicate that we do
not adopt a fundamental position in the debate about the terminolog y. Our primary aim
is to present different perspectives rather than (inadvertently) excluding some groups
because of the choice of a particular terminology. We have nothing to gain if people
refuse to cooperate because of our choice of words. This pragmatic approach proved to
be necessary (see note 4).
Finally, it transpired that interviewees with intersex/ themselves use the usual ter-
minology in very different ways. Some regard themselves as intersex or refer to  as a
diagnostic term, but they are the exception; inter views with active members of patient
organisations and persons with intersex/ revealed that they mostly do not use either
term themselves. Instead, they generally tend to use the condition-specific term, such
as ‘men with Klinefelter syndrome’ or ‘women with  chromosomes’. Some of those
interviewed were actually found to be entirely unfamiliar with the terms intersex and
.
The terms ‘hermaphrodite’ and ‘intersexual’ are less commonly used today by medical
professionals, advocates and affected persons themselves; see Box 2.2.
Box 2.2 Hermaphrodite and intersexuality: outdated and pejorative
The terms ‘hermaphrodite’ and ‘inters exuality’ are today regarded as outdated, confusing and
pejorative (Reis 2007). The term ‘hermaphrodite’ refers to a person with both male and female
sex characteristics . There is criticism of this terminology because the determination of a per-
son’s sex then depends to a large extent on the anatomy of the gonads, w hereas other fac tors
such as genes, chromosomes, hormones and gender identity also play a role (V ilain 2006).
The terms ‘intersexualit y’ or ‘intersexual’ are still used occasionally (e.g. Deutscher Ethikrat
2012; Vilain 20 06), but are oen seen as socially undesirable because they imply that the
condition is about sexuality, which it is not. The concept ‘intersexuality’ also suggests that a
person is intersexual, whereas many persons with intersex/ perceive their condition as
something that they have.
2.3 Definitions
There is also no single definition of intersex/ that is endorsed by all interest groups,
patient organisations and medical professionals. We will look briefly here at some of the
definitions that are used in the literature in certain circles.
The definition of  as set out in the Consensus Statement (Hughes et al. 2006) and
which is widely used in international medical science and among specialist medical
professionals in the Netherlands is as follows:
26
living with intersex /dsd
The ter m ‘disorders of se x development’ () is propose d, as defined by congenital con-
ditions i n which development of chromosomal, gonadal, or anato mical sex is aty pical.
(Hughes et al. 2006: 554)
The range of conditions covered by this definition and included in the same Consensus
Statement (Hughes et al. 2006) is broadly accepted both within and outside the medical
profession (e.g. Callens 2014;  2013; Van der Zwan 2013).
Interest groups, human rights organisations and scientists generally follow the Consen-
sus Statement by taking the same factors that are relevant for sex development. The dif-
ference is that they do not regard this sex development as ‘atypical’ in persons with
intersex/. The psychologists Liao and Boyle, for example, refer to intersex as
The outcome of sexual diffe rentiation proc esses result ing in the person’s chromosomal, go -
nadal or genital characte ristics n ot clearly corre sponding to one of our categor ies of male and
female (2004a: 446).
They therefore imply that ‘male’ and ‘female’ are not fixed biological givens, but are
categories defined by people. The Dutch advocacy groups  and  adopt a compa-
rable definition of intersex/:
Interse x is an umbrella ter m used to descr ibe various conge nital conditions in which t he devel-
opment of chrom osomal, gonadal or anatomical se x differs from the norm. ( 2013: 21;
 2013: 10)
The definition adopted in this report is based on all the above definitions:
Intersex/ is an umbr ella term used to de scribe various congenital conditi ons in which the
developme nt of sex differs f rom what medical profes sionals generally underst and to be ‘male’
or ‘female’. The differenc es may be chromosomal, gonadal or anatomical.
In the first place, this definition combines intersex and  to show that both terms
relate to sex development. The possible differences are the same as in the definitions
referred to above. This definition shows that intersex/ and norms regarding sex
development and what is generally considered ‘male’ or ‘female’ are not absolute.
The definition is therefore not based on a person’s perception of their own sex. As stat-
ed, persons with a form of intersex/ almost always feel male or female.7
2.4 Differences between intersex/ and transgender persons and sexual
orientation
As intersex/ is sometimes confused with being transgender or with being gay or
lesbian, in this section we explain the difference bet ween these groups. Put briefly,
intersex/ is related to a person’s sex, not to their sexuality, gender identity or sexual
orientation.
As a condition, intersex/ is not directly related to sexuality, though it can have
an impact on how someone perceives and experiences sexuality. Women with a shal-
low vagina, men with a small penis and people who have undergone many operations
on their external genitals may for example feel more uncertain in sexual contact and
embarking on sexual relationships (Callens 2014; Van Den Dungen et al. 2002). A lot of
   /? ,    
27
medical psychology research measures satisfaction with medical intervention by the
degree to which persons with intersex/ have sexual contact and find it a pleasur-
able experience (e.g. Callens 2014; Cohen-Keenis 2010). The impact of intersex/ on
sexual and relational experiences is discussed in chapter 4.
The distinction between intersex/ and gender identity is also important. Intersex/
 affects a person’s body and sex development. Those affected oen feel completely
a man or a woman, and this corresponds with their sex at birth as determined by medi-
cal practitioners. They are male or female in appearance and their gender identity – the
feeling of being a men or a women – is generally congruent with that appearance. This is
not the case with transgender persons; they experience a discrepancy between their sex
at birth and their feeling of being a men or a woman (Keuzenkamp 2012). This occurs spo-
radically with specific types of intersex/ (Cohen-Keenis 2010), for example in per-
sons with  and . It is also known that children with the most severe form of 
or with  are relatively oen more masculine in their behaviour and interests than
the average for girls (Cohen-Keenis 2010; Dessens & Cohen-Keenis 2008).8 There are
also examples of people with Klinefelter syndrome who grow up as boys but who later
come to feel more feminine or that they are a woman.
Like the rest of the population, most people with intersex/ are heterosexual.
There is generally no direct relationship between intersex/ and sexual orientation
(i.e. to which sex a person feels sexually and romantically aracted). Here again, there
are exceptions for specific conditions. For example, girls with certain forms of  feel
aracted to members of their own sex slightly more oen than average (Meyer-Bahlburg
et al. 2008).
2.5 Prevalence of intersex/
As intersex/ is a relatively unknown phenomenon, it is oen assumed that it is not
very common. However, it is not easy to give a good and above all unambiguous picture
of the prevalence. In the first place, this is because of choices made in deciding what is
classified as intersex/. In addition, several prevalence figures may be in circulation
for different conditions of intersex/. Prevalences of specific conditions sometimes
differ widely from one country to another (e.g. 5alpha-2 and 17beta-3). There are
also several conditions for which good, reliable prevalences are not available. As far as
we are aware, Dutch medical practitioners and psychologists specialising in  have
never published a total prevalence for  in the Netherlands. The question of how
oen  occurs is a pertinent one from a societal perspective, and we will therefore
aempt to answer this question for the Dutch population. To this end we present four
total prevalences, stating in each case which classification has been used and which
source the prevalence derives from.
28
living with intersex /dsd
Table 2.1
Classication of four total prevalences, Dutch population (in percentages)
source of prevalence scope classication population
known estimate of ambigu-
ous genitals 1:4500, cited e.g. in
Hughes et al. 2006
international limited to ambiguous genitals .
overview study Blackless
et al. 2000
international broad classication .
 advocacy group,
own calculation
Dutch, supplemented
by international
based on Consensus Statement;
calculation built up as prevalence
of ambiguous genitals + nine
other conditions
.
, own calculation Dutch, supplemented
by international
based on Consensus Statement;
calculation built up as prevalence
of ambiguous genitals + eight
other conditions
.
Source: 
Based on the most restrictive classification, in which the classification of intersex/
is narrowed to include only forms of ambiguous genitals, a prevalence of 1 in 4,500,
or 0.022% of the population, both internationally and in the Netherlands, is generally
accepted by medical professionals (e.g. Callens 2014; Hughes et al. 2006; Van der Zwan
2013). These are persons who cannot be immediately determined as male or female at
birth (Vilain 2006). Although Dutch medical professionals cite this prevalence in stud-
ies, they also note that it is uncertain whether the international prevalence constitutes
an accurate estimate for the Netherlands. Most professionals in the field of intersex/
regard a classification of the condition which includes only ambiguous genitals at birth
as too restrictive, because other (possibly) severe types of intersex/ such as ,
, Klinefelter syndrome and Turner syndrome are excluded.
The other three prevalences cited here are based on or correspond with the generally
accepted classification in the Consensus Statement (Hughes et al. 2006). That classifica-
tion is widely accepted by medical practitioners, non-medical researchers and Dutch
interest groups, and is also used as a basis in this study.
The highest estimate that receives broad support comes from the international overview
study by Blackless et al., which reports a prevalence of 1.7% of the population (2000).
The classification of intersex/ in this broad-based international prevalence includes
all conditions in which there is a difference of sex development based on chromosomes,
gonads, genitals and hormone levels and for which prevalences are known. The con-
dition-specific prevalences are generally based on a number of studies. The Dutch
   /? ,    
29
advocacy groups  (2013) and  (2013) take this broad international prevalence
figure as an upper limit.
Given the wide regional differences found for a number of conditions,9 it is important
when determining the total prevalence to make as much use as possible of studies
carried out on the Dutch population. In its document Standpunten en Beleid (‘Standpoints
and Policy’) (2013), the  aempted to arrive at an estimate for the Netherlands
based on the classification in the Consensus Statement. It assumes a prevalence of
0.6% in the Dutch population, though the  adds the caveat that reliable condition-
specific prevalences are not known for the Netherlands for all conditions, so that the
actual total prevalence of the entire range of intersex/ conditions in the popula-
tion could be higher. The calculation is the sum of condition-specific prevalences of
ambiguous genitals;10 47, (Klinefelter syndrome); 45,X (Turner syndrome); 47,;
47,; ; Swyer syndrome; ; hypospadias; and micropenis.
The Netherlands Institute for Social Research| has calculated a prevalence indication
for the Dutch population. It draws on the medical sources that underpin the prevalence
estimate of the , on Dutch medical publications and on information on patient
organisation websites. Where no condition-specific prevalences were known for the
Netherlands, international sources were used.  aempted to draw on at least two
sources for each condition. The calculation includes the same conditions as in the total
prevalence figure published by the , with the exception of micropenis, since it is
known that there is a good deal of overlap bet ween this condition and other conditions
classed as intersex/. As with the s estimated prevalence, only the severe form
of hypospadias is included.11 This leads to an estimated total prevalence of approximately
0.5% of the Dutch population. We should stress here that this prevalence indication is
a global estimate based on existing medical sources. We would also add the caveat that
specific prevalences are not known for every condition that is included in the classifica-
tion used in the Consensus Statement. We were also unable to determine the degree
of overlap between conditions. The total prevalence indication also includes people
with intersex/ who are not aware of their condition,12 for example people with
47,, 47, or 47,. It is difficult to determine the size of this group. We also do
not know how many people have been diagnosed or have at some point received medi-
cal treatment. Finally, we would note that roughly half the total prevalence indication
percentage relates to boys and men with severe hypospadias (see Appendix B for more
information on the calculation and the underlying sources).13
In conclusion, we can state that there is no uniform consensus regarding how oen
intersex/ occurs, and that any estimate depends greatly on the classification used
and on the conditions for which prevalences are available. At this point in time, the best
possible estimate of the prevalence of intersex/ in the Dutch population is around
0.5%; that equates to something over 80,000 persons, in the same range as the estimated
prevalence of transgender persons in the Netherlands (Kuyper 2012).14
30
living with intersex /dsd
Notes
1 In calculating the prevalence of inter sex/, both  and  included only the severe form s of
hypos padias; see also not e 11.
2 The term  (without the H) is also oen used in the Net herlands.
3 At the time of publication of t his report, the patient organisation Turner Cont act Nederland
announce d that they have doubt s as to whether the y should be classified under inter sex/. Mem-
bers of the organi sation feel that a label is being forced upon t hem which they do not recogn ise.
They see p oints of contact, but above all wide differences compared wit h other conditions th at are
classified as intersex/.
4 In Ger many and a few other count ries, the ter m inter* is used in a comparable w ay to trans*, where
the aste risk can be replaced with any chosen t erm. This use of int er* in the Netherlands is high ly
unusual.
5 Ther e are activists in som e other countrie s who associate  so strongly with a medical approach,
to which t hey are opposed, th at they are unwilling to coop erate with org anisations which use that
term (w ith whichever meaning). There are also organisations in t he Netherlands whic h prefer not to
use the term  bec ause they do not want people with these conditions to be seen as ‘patients’. On
the other h and, it is generally acknowledged that p eople with inter sex/ sometimes need medical
treat ment. The term ‘intersex’ met wit h resistance f rom some Dutch medical professionals , w ho
strongly advised usi ng only the term  in t he future. People who have not been diagnosed wit h
 may call themselves inter sex, and those w ith an intersex condition ar e consequently re garded
as a diffu se group. Interse x is also sometimes seen a s a non-medical, sociolo gical concept, and for
some people it i s too politicall y loaded. Finally, the connotat ion with sex and se xuality is re garded as
undesir able (Reis 2007). In some inter views with medical professionals it be came apparent that t hey
regard the use of the term interse x as a denial of the fac t that those concer ned have a medical c ondi-
tion and need treatment.
6 It would be more correc t to speak of persons with an intersex condit ion/, but for the sake of
legibility it wa s decided to use a shor ter variant.
7 People someti mes also see and identif y themselves as b eing intersex , but have not been diagnosed
as such by me dical practit ioners.
8 Inter viewees w ith  and Turner sy ndrome stated th at women within their patient or ganisation
very definitely feel them selves to be women and are oen ver y feminine in their gender e xpression
(verbal interviews).
9 This is the case, for example, w ith genetic condit ions and conditions t hat are more likely to o ccur
in case s of consanguinit y (relationships between persons who share a n antecedent). Some types of
intersex/ occur more than average among migr ant groups where endogamous ma rriages are
common. An e xample is .
10 Thes e include , , partial gonadal dysgenesis and p artial forms of testo sterone biosynthesis
defect s (e.g. 5alpha-2 and 17bet a-3) ( 2013).
11 There is a goo d deal of discussion about whether hypospadias should be reg arded as a type of in-
tersex/, because the nature and sever ity of the condition c an vary greatly (Hug hes 2010). In the
Consensus Statement, severe form s of hypospadias do count as  (Hughe s et al. 2006). In our
discussions w ith Dutch medical pr ofessionals, too, we found that t here was a lack of cons ensus
about whether or not hypo spadias should be cla ssified under . The social science resear cher
   /? ,    
31
Van Heesch argues that hyp ospadias should be regarde d as intersex be cause those affe cted oen
face oper ations and may be st igmatised b ecause their penis look s different from the a verage (verbal
inter view, 19 December 2013). In this pr evalence figure, hypos padias in de vici nity of the glans i s
le out of consideration, becaus e this is regarded as a mild form of the condition (Pierik et al. 2002;
 2013).
12 Some condition-spe cific prevalences were det ermined by screening the number of li veborn babies in
a given period, fol lowing which a calc ulation was car ried out for the population as a whole. Conse-
quently, it is possible that a prevalence of a condition is higher t han the percentage in the popu lation
who are themselve s aware of the condition.
13 Condition-spec ific prevalence s were only included in t he calculation if t here was access to the or igi-
nal scientific ar ticles explaining the c alculation of the prevalenc e.
14 Ku yper obser ves that between 0.4% and 0.8% of D utch men and between 0.1% and 0.3% of Dutch
women repor t having an ambig uous or incongruent gender ident ity, experie ncing feelings of ge nder
dysphor ia and having a des ire for medical treatment (2012).
32
living with intersex /dsd
3 Personal experiences of intersex/
In this chapter we look at people’s personal experiences of intersex/. What is it
like for someone to have intersex/? How do they experience their condition and
how does it affect them? First, we describe the various ways in which people discover
their condition. Since this is a condition which may entail medical aspects, we explore
people’s experiences of medical interventions and medication. We look at this in some
detail because it shows how intersex/ manifests itself and how different the nature
of medical inter ventions for conditions classed as intersex/ can be. We then look
at the extent to which people have difficulty in coming to terms with their condition
and whether the condition has consequences for their self-image as a man or woman.
A central theme in most inter views was that people have difficult y accessing good infor-
mation and obtaining support. That is also discussed here, as is how people ultimately
do find the information they are looking for. We conclude with a résumé of what is
known about the impact of intersex/ on perceived health and well-being.
The exploration of themes and issues is based mainly on aspects that emerged in the
seven individual inter views and the focus group session with persons with intersex/.
Where possible, this is supplemented with information from a literature review, inter-
views with experts in the field and a number of informal conversations.
This chapter devotes a lot of space to presenting the views of interviewees with intersex/
. However, we would stress once again that these are persons who have at some time
received medical treatment and who have (had) contact with patient organisations.
We do not have a clear picture of persons who have no experience of this or who are not
aware of their intersex/ condition.
3.1 The discovery and the message
People can discover that they have intersex/ in very different ways. With some condi-
tions, it is clear immediately aer birth that a baby has a form of intersex/, because
the appearance of the external genitals differs from the medical norm; the baby may
for example have a ver y enlarged clitoris or fused labia. Another example is when the
urethra of a baby boy is positioned in such a way that medical intervention is neces-
sary immediately aer birth. Chromosome variations are today identified much earlier
thanks to prenatal diagnostics, enabling parents to be informed of the presence of con-
ditions such as Turner syndrome and Klinefelter syndrome before the child is born. It is
also possible that a girl fails to begin menstruating aer entering pubert y and that medi-
cal investigation reveals a form of intersex/. Failure to become pregnant, finally, can
also result in the discover y of intersex/. In the past, doctors believed that it was bet-
ter not to inform patients about their condition because the impact might be too much
for them. Today, full disclosure is the norm.
One thing that all conditions have in common is that their discover y comes as a great
shock. All interviewees with intersex/ were able to recount in great detail how
they discovered their condition. We present a few examples from the interviews in this
   /
33
chapter, because they provide a good illustration of the impact, both for the individual
concerned and for those close to them. They also make clear that the taboo and embar-
rassment can be considerable for doctors and/or parents.
Most of those interviewed were advised of their condition following medical investiga-
tion because of the failure of puberty to begin, failure to become pregnant or because
of new medical complaints in adulthood. In one case, the interviewee’s condition was
discovered immediately aer birth and a medically necessary operation was carried out
straightaway.
The way in which the news is delivered is important for the way in which it is received.
Some interviewees felt that the doctors who informed them of their condition lacked
empathy, or else had empathy but delivered the news clumsily, making it more traumatic.
A few examples are given below.
Els, a woman in her forties, under went chromosome tests and screening for Turner syn-
drome at the age of 13 due to the lack of any sign of puberty beginning. Her mother was
first informed by the doctor. The doctor’s intention was to provide reassurance, but Els’
mother experienced it differently:
Els: What he w anted to say to reass ure her [was]: ‘They almost all end up marr ied, you know.
At which my mothe r, who was sii ng down, stood up again: ‘Is that s upposed to reassur e
me?!’ [Laughs]. My mother kne w so lile. There was no Internet or a nything like that in
those day s. My mother had read something in a medical enc yclopaedia, and that doe sn’t do
anything t o cheer you up. She didn’t know if I had a normal li fe expectanc y or serious medical
problems. A nd then he comes out with that line… It wa s well intentioned, but it wa s ...
[…]
[The doctor] c learly thought it was important tha t I should be told. He sat there tr ying to per-
suade my mothe r. Th ey knew then that I h ad Tur ner syndrome, but I d idn’t k now it yet. But you
end up in the medical sys tem, so there was a hear t examination, k idney testing, an d all the
rest of it.
[…]
We were walkin g down the corridor and he asked m e: ‘Do you know wh y you’ve just had th ese
test s?’ And I said, well, t hey found something wi th my bladder in an earlier test, and they
want to inves tigate further ... That’s what my mother had t old me. But I saw from his reactio n
that my mothe r hadn’t told me ever ything or that [it] didn’t quite add up. So my mother told
me aer wards, siing in the c ar in the car park of the [name of me dical centre].
Interviewer: And what did she t ell you?
Els: Well, what she k new. That I didn’t... I don’t know e xactly what she said. The ma in thing I
remembe r was that I wouldn’t be able to have childre n. I can’t remembe r exactly what el se she
told me. But that, ...that was th e thing.
Interviewer: And how did tha t feel? Because that’s a ver y different mess age from being told
that there ’s som ething wrong with your b ladder.
Els: Yes, it felt awf ul. It was really dist ressing. Hearing something lik e that, because, well, as a
girl you are of c ourse the most...I was already very int o in all of that, just like almos t all girls.
Naima, in her twenties, is another example of someone whose mother was told
very clumsily by the doctor that her teenage daughter had  and was infertile.
34
living with intersex /dsd
She received a phone call whilst at a Metro station on the way to visit her daughter, who
was in hospital for tests:
Naima: It wa s very brief, some thing like: your daughter ha s ; she can’t have childre n
and she does n’t ha ve a uterus. And the re you are, standing in a Met ro station.
A few decades ago, certainly, results of medical investigations which revealed types of
intersex/ were sometimes shrouded in secrecy. Jacqueline, a woman in her forties,
recounts how she found out about her condition aer she had undergone medical tests
because she had still not started her periods at the age of 16:
Jacqueline: So they foun d out that I had testic ular feminisation s yndrome. My vagina was,
well it was the re, but it was minimal. But the y didn’t t ell me, they told my mother. I reme mber
that my mothe r came to collect me f rom the hospital and eve ryone in the ward had had t heir
result s, except me. It was all shr ouded in a kind of secrecy.
Interviewer: You felt that yourself.
Jacqueline: Yes, I felt that myse lf; I thought, why aren’t they telling me anything? I can still
remembe r that. But they told my mothe r. I c an remember thinking t hat I was 16, and I said:
‘But I’ve got a right to be told myself; s urely I can decide that.’ I was already somet hing of a
rebellious type, I t hink. I asked my mother a bout it as soon as we were in t he taxi – my mother
sat there w ith such an expression on her fac e, I can still see it – ‘Mum, what’s wrong with me,
then?’ So the n when we got home my mother told me t hat I wouldn’t be able to have children
and that I was t oo narrow down below an d that I would never be able to go to b ed with boys
and that I shouldn’t go any where near boys. That ’s a n awful lot to take on bo ard.
It was only years later that Jacqueline was told by a doctor that she had  chromosomes.
Another woman, who is now in her sixties, also heard from a doctor decades later what
the real reason was for all the operations she had undergone as a young girl. For both
women, this secrecy by doctors had a heavy impact (see also § 3.5 and Box 3.3). As far as
we are aware, that kind of secrecy no longer occurs.
Medical advances mean it is increasingly possible to identify certain conditions or
anomalies immediately aer birth, during pregnancy or during the embryo selection
phase. It may be that discovery of an intersex/ condition prompts a decision to se-
lect a different embryo for fertilisation. Patient organisations sometimes come across
couples who are expecting a child and who approach them for advice on whether or
not a pregnancy should be terminated because of an intersex/ condition. Research
shows that the way in which doctors communicate the diagnosis, and which medical
specialist advises those concerned, can influence the decision to terminate a pregnanc y
(Marteau et al. 2002;  2013).1 Some of the inter viewees in this study with intersex/
 find the idea of terminating a pregnancy very painful: ‘It’s as if your life isn’t worth
living’ (woman with  chromosomes). Another woman, Els, who has Turner syndrome,
also finds it worrying and painful that when Turner syndrome is discovered during pre-
natal screening for chromosomal disorders (e.g. Down’s syndrome), those concerned
are asked if they would like an abortion. ‘Doctors just ask the question, straight out.
First they go through the whole list of problems: heart, kidneys, hearing, thyroid, motor
   /
35
deficiencies, spatial awareness: would you like an abortion?’ This illustrates that doc-
tors consider this to be a serious condition. But Els knows plenty of examples of women
with her condition, including herself, who play a full part in society. ‘In reality, they are
virtually saying that my life is worthless. And who decides that? I think that’s awful.’
Termination of pregnancies because of intersex/ is an issue that is being raised by
advocates ( Europe 2013;  2013).
3.2 The medical side: experience of treatments
The nature and intensity of the experiences that people with intersex/ have (had)
with medical interventions in their lives varies widely. Without seeking to be complete,
we give a few examples here which illustrate the spectrum of experiences.
For some people, the medical complaints are mild and their external appearance does
not necessitate medical intervention or monitoring. In boys with Klinefelter syndrome
or with  chromosomes and in girls with  chromosomes, for example, the medi-
cal complaints can vary and some will rarely or never come into contact with a doctor,
while others experience many problems in their daily functioning and seek help.
With some types of intersex/, those affected face a lifetime of medication, oen in
the form of hormone therapy. Women are prescribed oestrogen, while men take testos-
terone, because those affected do not produce these hormones or else they are not prop-
erly processed. Hormones can have a radical effect. One man with Klinefelter syndrome
explained that taking testosterone took a great deal of geing used to, both for him
and his wife. His bodily fat distribution changed, his muscle development increased, he
became more aggressive, more ‘macho’, needed less sleep and became more interested
in sex.
Some treatments do not require surger y. Women with certain conditions (such as 
and ) may have a blind2 or shallow vagina, which can cause them great psychological
difficulties. Insertion of a prosthesis (vagina dilator) can allow them to exert pressure to
deepen or expand their vagina. This practice, which has to be carried out on a daily basis
over a certain period, can be an alternative to surgery to create a vagina. However, the
use of the dilator does not always work and some women give up because it is too pain-
ful, too demanding or mentally too difficult.
Surgery on the internal or external sex organs may involve a single operation, but in
some conditions several operations are oen required because of the complexity,
because new problems arise in a new phase of life or because new complications contin-
ually arise. The accounts of Barbara (Box 3.1) and Paul (Box 3.2) describe the treatments
and operations that were required because of their conditions and how this affected
them.
36
living with intersex /dsd
Box 3.1 A lif etime of medica l treatments a nd operations
Barbara, a woman in her forties, has a long history of medical interventions, which continue
to this day. At the age of 13 she went to the doctor because her mother thought it was strange
that she had not begun menstruating and was not developing breasts. This situation did not
change, and at the age of 15 she underwent her rst operation. She was told that her ovaries
and uterus had developed into a malignant tumour and had to be removed. From that moment
onwards, she would have to take hormones. Because her breasts failed to develop, she was
ed with a breast prosthesis at the age of 16. She and her parents were still not told what the
underlying diagnosis was. The doctors advised them not to talk to others about it. The result
was that Barbara ended up feeling very isolated and built a wall around herself. Some time
later her vagina was e xtended using a portion of her large intestine. An infection developed
years later, resulting in severe pain, fever, frequent discharge, feeling constipated and severe
cramps. These problems became steadily worse. In recent years she has aended several
medical centres and been referred to all kinds of specialists, but no one was able or willing to
treat her. Ultimately she ended up seeing a specialist who was able to treat her as a priorit y,
which meant that she could be operated on within four months. She realises that her medic al
situation is complex, but for her the most fr ustrating thing has been that dierent depart-
ments were not willing to communicate with each other and the doc tors sometimes failed to
treat her with respect. Her most important message is that inter sex is something natural and
should not be seen as an abnormality. She is a woman with X and Y chromosomes, not a girl
who should have been born a boy. According to her, it is dicult to be open, because it means
talking about ‘intimate’ par ts of the body. This also makes it dicult to let others know that it
is sometimes hard to cope with.
In cases where ambiguous external genitals are discovered in babies and young children,
surgery is carried out immediately aer birth or at a ver y young age. The surgeons tr y
to bring the appearance of the genitals more into line with the medical norm for a girl
or boy. This process is oen stressful and distressing for parents, and it can be difficult
for them to take decisions about medical inter ventions. The information they receive
from medical professionals, and the way it is conveyed, is important (Streuli et al. 2013).
Advocates and human rights organisations are critical of early surgical interventions,
and so are some medical professionals,3 who argue that the physical integrity of the child
is compromised if they have no opportunity to give their consent to such irreversible
procedures. They also argue that genital operations are not always medically neces-
sary, and are primarily normalising or cosmetic in nature ( 2014; Commissioner
for Human Rights of the Council of Europe 2014;  2013; Council of Europe 2013;
Méndez, United Nations 2013; Wiesemann et al. 2010).
   /
37
Box 3. 2 Catheter and p enis construction
Paul, a man in his thirties, has bladder ex strophy, a condition in which the bladder is not
fully closed and is exposed on the outside of the lower abdominal wall. The condition was
diagnosed immediately aer his birth. Many operations followed, par tly because of the com-
plications.
‘A leak would develop and I would suddenly pass water from my abdomen; then it was closed
up and then one time there was a stone there . There was a leak somewhere and that caused a
bladder stone to form. I can’t even remember all the operations.’
He was incontinent throughout his youth and had to wear large incontinence pads. At the age
of 15, he decided in consultation with his parents that he didn’t want to carry on like this. He
underwent a major operation, in which a stoma was ed which was made from his appendix.
His bladder was enlar ged using a portion of his intestine. ‘Yes, that operation. Aer an opera-
tion like that , you have to use catheters to pass water.[…] That was a real breakthrough. And
it was great that I suddenly had complete control, including throughout the day.’ As a conse-
quence of the bladder exstrophy his penis was ver y small, and he found that a problem. When
he was an adult, he investigated whether it was possible to have his penis enlarged. It w as not
possible in the Netherlands, so he ende d up in Belgium. The surgeons took skin from his arm
to use for the reconstruction. It was a dicult time, but he is ver y pleased with the result: ‘For
me, it was above all about social freedom – taking a shower at the sports club, using a sauna
– and sexual function, to make it large enough for penetration. And of course, there’s also the
feeling of being ‘complete’ as a man.’ He feels that he is now able to manage his condition very
well and that he has got over the social, psychological and sexual dicultie s. But he also adds
that this is not the case for all people of his age or older.
Removal of the internal sex organs is occasionally carried out because of the small risk
of cancer. A number of older interviewees had experienced this. They saw this as a taboo,
because they were not involved in the decision to operate; in the past, these operations
were oen carried out without providing full information to parents and children.
They were also not always properly informed by their doctors aer the operation and
suffered from infertility and osteoporosis later in life as a result of the removal of the
internal sex organs. Today, full and proper disclosure to children and parents is the norm
among medical specialists.
In addition to the cosmetic and physical outcomes of medical inter ventions, present-
day medical research also increasingly gives overriding priority to ‘quality of life’, or
how patients experience interventions physically, psychosexually, psychosocially and
emotionally (Callens 2014; Hughes et al. 2006). Medical and psychological researchers
are also trying to gain a beer impression of how satisfied people are with medical inter-
ventions that they have – or have not – undergone, with allowance being made for the
type of intervention, the person’s age and the condition. A recent study by Callens et al.
(2012a), for example, shows that the majority of women with  who undergo opera-
tions are reasonably satisfied with their external appearance following surgery, but less
satisfied with their sexual functioning compared with other women.
38
living with intersex /dsd
3.3 Self-acceptance of a chronic condition and (sometimes) infertility
It can be difficult to come to terms with having intersex/, especially where the
nature of the condition is severe. Most of the inter viewees with intersex/ have pro-
gressed a long way in their process of self-acceptance, but none of them found it easy to
come to terms with their condition and its consequences. The process of self-acceptance
appears to be focused primarily on coming to terms with having a chronic condition, its
physical consequences and the person’s self-image as a man or woman. This laer aspect
is discussed in the next section.
People with intersex/ have to accept that they have a chronic physical condition
which may necessitate one or possibly many operations, physical discomfort and limita-
tions, a lifetime of using medication and, in some conditions, permanent monitoring by
doctors. Being a patient and having to deal with the condition every day of their lives can
be difficult.
Those affected also have to come to terms with the impact on their external appearance.
Examples include the appearance of the external genitals in some conditions; a different
distribution of bodily fat, breast formation and reduced muscle mass in men with Kline-
felter syndrome; lack of underarm hair and body odour in women with some forms of
; a less gender-conforming appearance of some women with  and persons with
. A consequence of some conditions is that those affected are infertile or become so
as a result of operations. Receiving this news oen has a great impact on them because it
can shaer their picture of the future. Earlier Dutch research has shown that the sadness
felt by women with  about their infertility sometimes leads to feelings of inferiority
compared to others (Callens et al. 2012a). Naima recounts how she heard the news about
her infertility in the hospital during her adolescence:
Naima: I had ju st come round from the anaesthetic whe n I was told. The hospital doc tor and
the gy naecologist were standing nex t to my bed and told me: you have  and y ou won’t
be able to have children and your v agina isn’t, er, complete, well actually you don’t have one.
They said I had no uteru s, effectively. And t hen that woman agreed wi th the gynaecolog ist:
yes, but I wouldn’t do any thing about it, because th at’s how you were bo rn, so you’ll just have
to accept it . So there you are, you’ve just come r ound [from the an aesthetic] when they tell yo u
all that; you can imagine, it was all a bit stran ge, to say the least […]
Interviewer: Can you reme mber how you felt when you wer e told?
Naima: I had mi xed feelings, really. Somet hing like, oh, I can’t have children and I really
wanted childr en. I’ve always had a cer tain picture of a f uture with children and a husband…
And then you s uddenly realise that yo u can’t have childre n. So it’s more than just not havi ng a
vagina. That wa s the worst thing, reall y.
Bart, a man in his thirties, was diagnosed with Klinefelter syndrome when he and his
wife were tested because she did not get pregnant. The news that he was probably infer-
tile came as a shock and had an impact on his self-image.
Interviewer: You said, ‘it was one of the da rkest period s in my life’. What was it in pa rticular
that was so… Can you say somet hing about that? About the gr ieving proce ss and what it was
tha t you...
   /
39
Bart: You just s tart really doubt ing yourself. I also wanted t o leave my wife. I was le f eeling:
This is my fault. You must now go and do some thing different with y our life, without me, becau se
I can’t give you what’s nor mal and what anyone would be able to do. I’ve never seen her s o angry.
So okay, that was n’t an option.
In section 4.2 we look in more depth at infertility and at alternative ways of fulfilling the
desire to have a child.
3.4 Self-image as a woman or man
People with intersex/ typically see their condition as something that they have, not
something that they are. As far as we are aware, people affected in the Netherlands have
lile need to be acknowledged as being intersex or having an intersex identity. Above all,
most of them want to be regarded as normal men and women. People with intersex/
almost never have doubts about whether they feel they are male or female. That feeling is
generally congruent with their appearance and with whether they were brought up as a boy
or a girl.4
Intersex/ can however have consequences for a person’s self-image as a complete or
normal man or woman, especially those conditions which are externally visible and where
the genitals differ from the medical norm. The sensitivity of maers connected with a
person’s sex and sexuality also plays a role here. The anxiety about not being regarded as
a full man or woman would seem to stem from a feeling that there is doubt about their
gender (Alderson et al. 2004). Self-acceptance is important for a positive self-image, but so
is knowing that others see you as a full man or woman. The inter views showed that some
people with intersex/ have had difficulty in seeing themselves in this way. A woman
from the focus group who has  said the following about this:
You don’t fit the prototyp e of a woman. For us, of course, things are also a b it different than… You
were bor n without a uterus a nd without a complete vagi na and that’s more about the perc eptions
of other people as to what a woman s hould look like. And you’re not like tha t, and that’s wrong.
That’s something t hat’s especially com mon in a man’s world, the way p eople think about that.
Interviewees who are or have been active members of patient associations say that women
within their organisations take a great deal of trouble to ensure that they appear well-
groomed and feminine. They feel themselves to be women, but sometimes feel the need
to emphasise that even more because of their condition. Sjaan, a woman in her sixties,
recounts how she felt that she had to confirm her femininity when it became known that
she had  chromosomes. For a long time she was afraid that others could see that. A doc-
tor once made that insinuation, and it affected her deeply.
Interviewer: You said that your firs t reaction was: my hu sband might want to leave me.
Sjaan: Yes.
Interviewer: Did it also affec t your self-image?
Sjaan: Yes, of course it did! Re ally, I just wante d to look as feminine as pos sible. Because jus t
imagine… A nd I did imagine that because that one doc tor had said it… Yes, of course tha t does
something to y ou.
40
living with intersex /dsd
People sometimes need time to accept that their own genitals are different from the
average, and may feel lonely during that process of self-acceptance. This also applied
for Jacqueline, a woman in her forties with  chromosomes. For a long time she had
the feeling of not being a complete woman and had difficulty in accepting her external
appearance.
One day my fat her came to my bedroom. I re member that I had a sort of very w ide, brown
stick ing plaster down below, that I was using to c over myself up. I was in fr ont of the mirror. I
remembe r that I had a mirror in my bedr oom. A great big one. And I was s iing there stic king the
plaster on. When I think back to it now, as an adult, I think : I didn’t want that lowe r part of my
body. I didn’t want to have any thing to do with it. With some kind of duct t ape or something [...]
One way and an other, it’s always s tayed in my mind: I’m half man. Becau se of that I could nev-
er… I couldn’t be happy. I had it in my head tha t somehow I wasn’t right, I was an alien, I was… I
came fr om another planet, I was ‘only t he lonely’. There was a s ort of loneliness in my c ondition.
I didn’t have any other p eople around me who had the same thing.
For Jacqueline, meeting another woman with  was the affirmation she needed in order
to be able to feel she was a woman. She recalls the first moment of that meeting:
We just sor t of sat there thinking some thing like, gosh, you’re just a ver y prey young woman!
She needed that, too, and I think I neede d it very badly f rom her.
There are professional experts who believe that the process of self-acceptance by men war-
rants more aention, because they appear to be less organised and generally find it less
easy to talk about sensitive subjects. Masculinity is a narrowly defined concept in societ y,
and this becomes all the clearer when men differ from the norm, for example if they de-
velop breasts or if the length of their penis is unusual. It is not possible on the basis of this
exploratory study to make a good comparison between self-acceptance and self-image in
men and women, respectively, with intersex/. The following quotation from a man in
his thirties shows that a negative self-image is in any event not the sole preserve of women.
It has a huge effect on you. It made m e feel very differe nt. It sounds very o dd, but I genuinely went
through a per iod when I thought: you ha ve boys, you have girls and y ou have me! You know, a
sort of, a kind of in-be tween feeling, or not re ally in between, more ‘other’, you might say.
Various medical procedures are available today in which the body can be ‘constructed’ to
bring it closer to conforming with the medical norm for a man or woman. For Paul, an
operation on his penis helped with his self-image. It was stated in the focus group that
medical inter ventions can have a positive effect, but that they are not always the answer to
improving someone’s self-image as a woman or man. Ultimately, each individual has to go
through an internal acceptance process.
Nicole: Just creat ing a new vagina doesn’t mean the p roblem is resolved.
Nadine: It’s also about your self-image.
Interviewer: Can you say something more ab out that?
Nicole: Well, I think that if you have a ver y negative view of your self and don’t see yourself as a
complete woma n, just hav ing a new vagina doesn’t help. You then have to… It doesn’t solve any-
thing. On the other hand, if you do see y ourself as a complete woman and have a pos itive aitud e
   /
41
to life, having a vagina could hel p. B ut that’s really a very individual thin g. It depend s how far
along you are in you r development, in that pro cess.
Callens also argues in her thesis that medical intervention does not always lead to
a ‘correction of a person’s self-image’ (2014: 298). She argues that a medical approach
should therefore be combined with psychological support.
It is not only the person with intersex/ who has to go through a process of
self-acceptance: sometimes their parents do, too; they also have to learn to come to
terms with loss and anxiet y, and sometimes need to adjust their perceptions about sex
and sexuality (Alderson et al. 2004; Liao & Boyle 2004b). It is not unheard of for mothers
to feel guilty about their child’s condition, because they have ‘passed on’ genetic mate-
rial. This was the case, for example, with a woman with  chromosomes:
I was there when they ha d been watching a medical pr ogramme on  about inter sex [special
edition of t he programme ‘Vinger aan de pols’ in 2003]. I could see that t here was a lot of emo-
tion, and… I find i t…, I find it ver y difficult. My mother felt guil ty. And I said: ‘Mum, you can’t
do anything a bout it.’ My mo ther was the carr ier of the gene, though. So y es, … my mother felt
guilty. So I said: ‘Mum what on e arth could you have done about it? You’ve just found out th at
you’re the carr ier – and then what?’
Medical professionals state that the aitude of parents has a major impact on how
children and adolescents view their condition. If the parents have a great deal of difficul-
ty in accepting their child’s condition, this oen impacts on the child’s own acceptance
process. Providing support for parents is therefore important (Liao & Boyle 2004b;
Wiesemann et al. 2010). In specialist medical centres and patient organisations, both
children and parents can receive counselling and support.
3.5 Access to good information and support
For a long time, it was usual practice for medical professionals not to tell patients with
types of intersex/ about their condition, based on the argument that this would not
help their well-being. This confirmed the idea that they had something terrible, which
must not be talked about (MacKenzie et al. 2009). This secrecy was oen experienced as
signif ying ‘unuerable shame’, and its impact generally persists for decades (Liao 2003;
Liao & Boyle 2004b: 460). Some argue that this secrecy and the fact that children were
never asked for their consent for medical interventions are now the most problematic
issues in relation to intersex/ (Wiesemann et al. 2010: 673). Interviews with Brit-
ish women with  and New Zealand women with intersex show that being given full
information, in combination with support, are crucial in enabling them to accept their
condition (Alderson et al. 2004; MacKenzie et al. 2009). Box 3.3 recounts the story of a
woman for whom lack of good and complete information about her condition affected
the course of her life.
42
living with intersex /dsd
Box 3.3 Fighting for inform ation about what you have
Sjaan is aged around 60. For the rst 40 years of her life she did not know that she had 
chromosomes. She underwent operations during that time, but was never informed about her
condition. Yet this disorder, as she calls it herself, has had a signicant impact on her life. At
the age of 16 she went to the  because she had not started her periods. ‘Ever ything’s just a
bit small and not fully grown; that’ll come in time. So you go back again later; the same stor y,
and I should s ay that we’re almost talking about prehistoric times here.’ She has had numerous
operations over the years, when the information she was given was not always complete or
correct. And she was told that her ovaries had been removed. Later, her uterus was also re-
moved. When she was in her twenties, she was told aer a medic al examination that she was
infertile and would never be able to have children. She was not told why.
In her younger years, with nancial suppor t from her husband, she gave up her job in order to
dedicate herself completely to elite sport . Doctors already knew at the time that she would
never be allowed to par ticipate in international competitions because she would be disquali-
ed in any examination because of the  chromosomes. The prevailing idea at the time was
that her muscle development was ‘masculine’ because of the  chromosomes. That view is
now outdated.
When she was aged around 40, she suered severe back complaints and was informed by a
doctor on the telephone that she had osteoporosis. In passing, the doctor added that this was
not unusual, because she had  chromosomes. The endocrinologist explained: ‘So then he
said: you’ve got  chromosomes in all your cells. You should have been born a boy, but you
became a woman. Well, I c an tell you, my world fell apart. […] Then I thought: my husband will
leave me. What will he want with such a weird person? Category . That’s what it was. Your
world is turned upside down.’ In that period, she wanted to look as feminine as possible.
She saw lots of medical professionals and medical e xaminers. Her medical records had been
locked away in the hospital safe in the past; at least, that’s what she had to say when her re-
cords were missing. It w as only aer repeated requests that the employment insur ance agency
() was able to have full sight of her records. The  ultimately classied her as ‘not t for
redeployment’, without giving reasons. She herself says that she was deprived of a lot, becau-
se others made choices for her without informing her. According to her, the taboo is so great
because it is about sex. The worst thing in her view is that she had to ght to obtain infor-
mation about what she had. She also had to go to a great deal of eor t to get in contact with
people like herself, because doctors oered no help. She has now found other women and says
that these contac ts feel like a warm bath: ‘You only need to say one word, and that’s enough.’
Today, full disclosure of all information is the guideline for medical professionals who
are treating people with intersex/. In the Netherlands, children and adolescents are
informed in stages in specialist medical centres, so that the provision of information
is matched to their development (Callens 2014). Yet a few of the adult inter viewees with
intersex/ felt that they were still not being given adequate information about their
condition and the treatments. The amount of information given by doctors appears to
vary widely between the different medical centres. This may be linked to the degree to
which centres specialise in the condition in question, but centres also sometimes fail to
provide pointers as to where more information can be found. Bart, a young man in his
   /
43
thirties, recalls how he and his wife were told by a medical specialist a few years ago that he
had Klinefelter syndrome.
Bart: He jus t came straight out wit h it and said: ‘I see dark clouds hanging over your de sire to
have childre n. You h ave Klinefelter s yndrome.’ That’s what he said, just like tha t. He then went
on to explain how a normal p enis ejaculates. H ow oen and how that work s. Well, I can tell you,
my cognit ive overload had alread y been reached. And so had yours [h is wife]. Yo u just sat there
sobbing. And the do ctor could only look at her [ his wife]. It was really aw ful. We weren’t given
any infor mation to take away w ith us.
His wife: He ment ioned the word Klinefelt er once and said something about a chromosome
abnormality, and that was it.
Bart: So of cour se we googled it aer wards, because tha t’s what we do.
[…]
His wife: Or at the v ery least a folde r that you get from th e doctor. We weren’t even given a folde r.
Bart: Yes, with an swers to bas ic questions about where you could go for help; this or that contact
point; this informat ion on the Internet is r ight, that information isn’t.
His wife: Becau se doctors alwa ys say ‘you shouldn’t go and look on the Int ernet’, but if you
aren’t given any in formation, then of co urse you’re going to go and look it up on the In ternet.
[…]
Bart: I also didn’t know… I started thinking thing s like, ‘Will I die early, is this …?’
His wife: He didn’t want to look on th e Internet. It was me wh o started googling. I didn’t eve n
know how to w rite it. I knew the re was something about Klyne (I didn’t know how to spell it), and
chromosome, I re membered that. And I couldn’t remember half of wha t the doctor had told us.
Then I read abo ut it and discovered that li fe expectanc y is normal. It’s one chromoso me too many.
It’s this and it’s that. So one night when he said to me, in tears, ‘Am I going to die e arly?’, I wa s
luckily abl e to say to him, ‘No, you’re not going to die early’. Because I’d read that on the In ternet.
And I think the se things are really a big dea l; I t hink the doctor should have t old us.
The persons interviewed with intersex/ did not obtain their information only from
medical professionals, then. Patient organisations play a role by facilitating the sharing
of information about experiences with doctors and different treatments. Medical special-
ists who see the importance of providing good information also deliver presentations to
patient associations. The Internet is a readily accessible source of information, but has the
disadvantage that the information available is not always presented well. Professionals
point out that people can sometimes be shocked by the potential consequences that are
described on the Internet, whereas they do not apply for everyone. It is difficult for lay
people to assess the quality of the available information. The fact that sensational stories
and images are also placed on the Internet can also prevent people with intersex/ from
being open about their condition, because they are afraid that others will then find pejora-
tive and misleading information on the Internet.
The Dutch Klinefelter Association (Nederlandse Klinefelter Vereniging) believes there is a
need for standardised information (Kalsbeek & Plaeel 2012). There is currently no good
website available containing detailed information on both the medical and non-medical
aspects of various types of intersex/. Information is fragmented across interest groups
44
living with intersex /dsd
(particularly the Dutch advocacy group ), patient organisations and websites of
medical centres.
3.6 Health and well-being
Problems that people experience in relation to their condition can impact on their
health and well-being. Research among minorities and vulnerable groups suggests that
people’s perception of their own health and well-being is an indicator of how a specific
group in society is faring compared with the population as a whole. Here, we look at
what is known on this subject for people with intersex/.
Medical studies suggest reduced psychosocial and sexual well-being (Johannsen et al.
2006; Callens et al. 2012a; Callens 2014). Whether or not people with various types of
intersex/ in the Netherlands also score below average on general indicators such as a
poorer self-image, depressive symptoms, loneliness, suicide, satisfaction and perceived
happiness, is not known. Sanches and Wiegers conclude in a study of young people with
 that they do have complaints, but that they function in a comparable way to their
peers (2010). Yet there are indications that persons with intersex/ may have reduced
health and well-being.
First, health and thus potentially well-being can be affected by the medical aspects of
a condition. People with intersex/ may have to cope with reduced functions and
capacities (including infertility and comorbidity), permanent medication, problems
with their physical appearance, being a patient and all manner of physical complaints.
Research among adults with  suggests that people with this condition can struggle
for the whole of their lives with emotional reactions to their diagnosis, including grief,
anger and shame (Slijper et al. 2000).
Second, reduced health and well-being may be related to medical interventions and the
way in which the person concerned is treated by medical professionals. Inter ventions
may for example be experienced as traumatic due to poor communication, inappropri-
ate social treatment on the part of medical professionals or disappointing outcomes.
A sense of being different, inferior or unhealthy can also be exacerbated by medical
treatment (Alderson 2004; Karkazis 2008).
Third, well-being can be affected by actual or anticipated treatment by societ y. Taboo,
silence, embarrassment and feeling that others have difficulty dealing with the condi-
tion and show lile understanding can lead to a feeling of being different (see § 4.3).
Many of those interviewed spoke of loneliness, and this has also been found in other
research (Alderson et al. 2004). During pubert y and young adulthood, in particular, some
interviewees withdrew and felt different, alone and isolated.
There is no overall picture of whether and how these three circumstances (medical
condition-specific aspects, medical and social treatment by medical professionals,
treatment by others in the social environment) impact on the health and well-being
of people with intersex/. There is also currently no information on differences in
health and well-being between conditions, method of treatment and sociodemographic
characteristics. Research on the need for psychosocial support, its methods and effects
is also lacking in the Netherlands.
   /
45
In international research, psychosocial support and contact with others with the same
condition are cited as factors that can contribute to improved well-being (e.g. Alderson
et al. 2004; Callens 2014; Hughes et al. 2006; MacKenzie et al. 2009). The persons with
intersex/ who were interviewed for this study largely confirmed this. Those who had
actually received psychosocial support said they had benefited from it. Others sought
this support later in life because they had not received it hitherto. According to the indi-
viduals and professionals interviewed for this report, however, it is important that psy-
chologists are specialised in intersex/. The professionals interviewed stated that the
psychosocial support given in specialist medical centres is today provided as standard
by expert psychologists. It is not known whether this is the case everywhere in the Neth-
erlands. Contact with others having the same condition or problems was considered
important by all those interviewed for this report. This is discussed in chapter 4, where
we look at intersex/ in relation to the social environment.
Notes
1 This study was c arried out in eight European c ountries and took place a long ti me ago. It is not
known whether t he information and r ecommendations g iven concerning pregn ancy termin ation in
the Nethe rlands differ bet ween medical speciali sts and medical centres.
2 In a blind vagina, there i s no birth canal pre sent between the labia.
3 Ther e are some indications that medical profe ssionals sometimes feel under pres sure from parent s
to perform surgery, while this is not necessary from a medical point of v iew.
4 With some conditions, cross- gender behaviour, or the desire t o change sex, occ urs more commonly
than in the average p opulation, but these a re exceptions (Cohen-K eenis 2010).
46
living with intersex /dsd
4 The social environment: openness, treatment by
others and participation
The principal focus in this chapter is on the extent to which having intersex/ impacts
on the relationship of those affected with their social environment. We investigate
whether people with intersex/ are open to those around them about their condition
and whether they adapt their behaviour. The impact of intersex/ on intimate and
sexual relationships is also discussed. Some intersex/ conditions are accompanied
by infertility; we look at the reactions to persons who are unable to have children and at
what alternative ways people sometimes find to fulfil the desire to have a child.
The chapter then describes how people with intersex/ feel they are treated by others,
in other words how others in their social environment react to their condition. We draw
a distinction between people in their personal network and professionals in medical
practice. We then explore whether intersex/ can create impediments to participa-
tion in education, work and leisure activities. Finally, we look at the need for contact
with others who also have intersex/. Patient organisations exist for some condi-
tions, making it possible to share experiences and information.
As in chapter 3, the different themes and problems are explored on the basis of the expe-
riences of persons with intersex/ who were interviewed individually or in a focus
group, supplemented with information from a literature search, inter views with profes-
sionals and informal conversations. The inter viewed persons with intersex/ had all
received medical treatment and had at some time been in contact with patient organisa-
tions; they therefore form a selective group.
4.1 Lack of openness
For people who are aware that they have intersex/, the decision on whether or not
to be open towards other people about their condition is one that constantly recurs.
One question which may arise is whether it is relevant for those with intersex/ to
share information about their condition with people other than their partner and doc-
tors. This is aer all a highly intimate maer. For many of the inter viewees in this study
with intersex/, however, not being able to talk completely openly about their condi-
tion is a heav y burden. Three women in the focus group spoke about this:
Woman with  chromosomes: I oen have t he feeling that I can’t be completely open
and that doe sn’t f eel entirely hone st. And I think that fr iendship is also about honest y. And it’s
only when you fe el that you can tell someone e verything tha t you feel really close to the m; but
you have to go through that phase earlier.
  : ,     
47
Woman with : Yes, it’s something you have to ge t over every t ime. I have it ever y time
I get a new manager at my work . Of course I do a great dea l for [patient organis ation]. So I
sometim es have to leave work, and sometim es I receive phone call s there. And then I have a
new manage r and I have to explain th e whole story again. And t hen I think: Should I tell him
or not? And at a ce rtain point you’ve taken that step and th en the trust i s there. But it’s a big
step before you get to that point.
Woman with  chromosomes: What I’ve notic ed about myself is that onc e I get to the
point where I ca n be completely honest with fr iends, in relationships but also in fr iendships,
then I oen find that they u nderstand me much be er as a result. And t hen I think something
like, why on ear th didn’t I tell them earlier? People th en understand more q uickly why you act
or react in a c ertain way.
These fragments show that keeping the condition secret does not stem from any sense
that it is irrelevant. The interviewees want to be open because they have the feeling that
they are keeping back something important, but find it difficult to talk about their condi-
tion and are therefore unable to be completely themselves. Those interviewees who are
active within patient organisations and who could be regarded as a ‘vanguard’, are also
not open all the time and in every situation. Other studies among persons with intersex/
 reveal the same picture (Alderson et al. 2004; MacKenzie et al. 2009).
Research and interviews with professionals suggest that being open is in fact oen a
crucial part of the process of self-acceptance and developing a positive self-image (Alder-
son et al. 2004; MacKenzie et al. 2009). Openness also increases the chance of meeting
others with the same condition and of receiving psychosocial support (MacKenzie et al.
2009). Being open is moreover the only way in which people can share their worries or
problems regarding their condition with those around them. This applies both for peo-
ple with intersex/ and for their parents. One female inter viewee, who was active in
a patient association, saw that parents can find it difficult to be open with those close to
them about their child’s condition:
Woman with  chromosomes: It’s just about be ing able to talk freel y about something
that parents are oe n very caref ul about when talking to ot her people. They oen do n’t even
talk to close f riends about it.
Interviewer: What kind of t hings, for example?
Woman with  chromosomes: Oh, just being able to talk f reely about what’s happening
with thei r child and what they are hav ing to deal with and what the y miss or what they would
like. Or per haps that they’re jealous o f the way someone talk s about their child if the y have
a clearly v isible disorder… Becau se you then can’t avoid talking abo ut it, because it’s visible.
So yes, it can be ve ry wide-ranging.
48
living with intersex /dsd
The study by MacKenzie et al. (2009) shows that people who are open about their in-
tersex/ condition find it to be a positive experience, even when it leads to negative
reactions or incidents. This begs the question of why people with intersex/ are so
reticent about being open. People who are aware of their own intersex/ condition
may be very well aware of the stigma and sensitivities surrounding it. They may feel
shame or anxiety about being open because of an anticipated lack of understanding or
embarrassment on the part of others. This may be linked to the taboo on talking about
deviations from physical sex norms, sensitivities about talking about intimate parts of
the body, or sensitivities in relation to infertility (Van Heesch, forthcoming; MacKenzie
et al. 2009).
One familiar strategy for avoiding rejection is for people to withdraw and isolate them-
selves (MacKenzie et al. 2009). Persons who discovered their intersex/ condition dur-
ing adolescence oen apply this strategy during that phase of their lives. They become
inaccessible to others, both peers and adults. The result is that they may feel lonely, dif-
ferent and not understood and that contact with friends is diminished or lost. For some,
this lasts all their lives, while for others it is mainly relevant during their teenage years
and early adulthood. Another way of avoiding rejection is to avoid certain situations and
locations, so that the openness with others can be ‘regulated’, as it were. For example,
people may avoid saunas and group sports and not allow members of the opposite sex to
come too close in a romantic context.
What people tell others, turns out to be an important theme in contact with peers in
patient organisations. Many women with  chromosomes, for example, find it simpler
to say they are infertile than to reveal information about their chromosomes. There can
be several reasons for infertility and this enables the person concerned to avoid disclos-
ing the cause, namely the intersex/ condition. Having a chromosome var iation
appears to carr y a greater taboo (Liao & Boyle 2004b).
Another way of adapting is to try to join in with the behaviour of others. For example,
a number of women said that they took tampons with them to secondar y school and
pretended to have periods, whereas this was not the case. Paul, who had to take inconti-
nence pads to school and change them there, had to try ver y hard to keep his condition
secret: ‘Yes, that was awk ward. I mean, it felt sneaky and I was in pubert y and you feel
embarrassed about it, because it’s a secret. That has a big impact on you, and it’s not
nice.’
To what extent the present younger generation find it easier to be open to their peers and
to what extent they adapt is not known. Interviewees who are active in patient organisa-
tions reported that the way young people deal with this varies widely. It is also not yet
known which factors are associated with openness and not adapting.
  : ,     
49
Box 4.1 We ar e a forgoen group
Jacqueline is in her late forties and lives in a village with her husband. She has Complete An-
drogen Insensitivity Syndrome (). When she was 16 she had to go to the doctor because
she had not begun menstruating. She was not told the diagnosis, but was merely told that she
would not menstruate, was infertile and would not be able to have se x because she had a blind
vagina. Her disorder, as she calls it, was not spoken about in the family. This secrecy was a hor-
rible experience for her. Precisely at the age when her girlfriends were becoming involved with
boys, she w as told that she had to st ay away from them. She did not even dare to kiss boys
for fear that they would want to go fur ther and would discover her secret. The rst year aer
learning about her condition was particularly dicult, because she had to come to terms with
the news alone. It was not spoken about at home and she was afraid to take girlfriends into
her condence. She did not function well and ultimately her school results were so bad that
she had to abandon her studies. She wanted to belong, and therefore always took a tampon
to school with her, even though she had no need for it. When she was in her early twenties ,
her rudimentar y uterus and ovaries were removed. At least, that was what she thought; later,
she discovered that they were testes and that she had been operated on for something dif-
ferent. Information was withheld and the truth was distor ted, and that made her uncert ain
and distrustful. Then she learned that she had testicular feminisation syndrome, at the time
also called pseudohermaphroditism. ‘That meant nothing to me.’ She searched for informa-
tion, but there was nothing on this topic in the librar y. Some time later she discovered that the
more common name for her condition was now . She experienced it as a great burden that
she had to carry this secret alone. She calls it ‘invisible misery’ and says, ‘we are a forgoen
group.’ She feels that there is a taboo on talking about her condition, has learned that people
will never ask about it, even when they are aware of her condition, and suers many physic al
and sometimes also mental problems. In her view, the taboo stems from the fact that the
condition is about sexuality. When asked what would help, she says it is import ant that people
know that there are more possibilities than just boys or girls. Contact with others has helped
her enormously.
4.2 Forming relationships and the desire for children
In many situations, people with intersex/ do not need to be open about their condi-
tion, but that changes when it comes to intimate and sexual relationships and the desire
to have children. Engaging in sexual contact or embarking on a relationship can be
daunting for them, even if they have a strong desire to do so (Liao & Boyle 2004b). They
may have difficulty with this because of their external appearance or the functioning of
their genitals. This can cause them to avoid sexual contact or may reduce the pleasure of
dating and sexuality (Hughes et al. 2006; Liao & Boyle 2004b). They may feel considerable
embarrassment and fear of rejection (Mackenzie et al. 2009). Patients with  oen
reach sexual ‘milestones’ later than the average population and report more psycho-
sexual problems (Callens et al. 2014). Prevailing ideas about what ‘normal’ or ‘desirable’
sexuality is and about what constitutes ‘a good partner’ mean that they feel vulnerable
and have difficult y embarking on relationships and holding on to a partner.
Research among young Dutch people with  showed that those who had experience
with sex and relationships were mostly positive about those experiences, but that there
50
living with intersex /dsd
appeared to be a relatively large group who had no experience (Sanches & Wiegers 2010).
A woman with  chromosomes in the focus group explains why dating can be difficult
for girls with her condition:
If you’re completely inexpe rienced and you don’t have a vagina, sexual intercourse… you jus t
can’t do it. Of course y ou can engage in sex in all k inds of other ways and you can enjoy it, b ut
you do have to e xplain to a boyfr iend that the most impor tant issue is that you can’t do that.
And you then s tart off with a proble m from the beginning, because you ha ve to say right fro m
the star t: ‘listen, we can get it t ogether, but we can’t do that.’ You have to st art off by explain-
ing all that. That ’s n ot nice.
Interviews and medical publications show that people with intersex/ encounter
the reality that ‘normal sex’ is generally regarded as being limited to heterosexuality
with penis vaginal penetration, whereas that form of sex is not always possible for them
(Callens 2014; Liao & Boyle 2004b). This can have consequences for their sexual self-
image (Van Heesch, forthcoming; Liao & Boyle 2004b). Some young women who were
interviewed had kept men at a distance for a long time. Naima, a woman in her twenties
with , talks about this:
Naima: Some how or other, there’s something that hold s me back… And then I t hink, because I
don’t have that vagina, er… Yes that ’s a so rt of obstacle. Mental ly, I t hink it’s to do with that.
Interviewer: That you block it out?
Naima: Yes. The n I think, he’ll soon want to move on, and then, er...
For Paul, his bladder exstrophy did not hold him back from dating and geing
girlfriends, but his condition did have an impact on his sexual experience. Later he un-
derwent an operation, which helped him feel less inhibited.
It was all fine, rea lly, including wit h sex, though there wa s that one girlfri end who said: ‘Yes,
well I do miss pe netration a bit, that it doesn’t… An yway, I miss that a bit.’ Of course, you ca n
argue about tha t, to what extent that should really be a prob lem.
Persons who are in a relationship when they learn about their condition sometimes fear
that they will lose their partner. The condition can undermine their self-image as a full
partner. For example, Box 3.3 in chapter 3 contains a description of how the biggest fear
of Sjaan, a woman with  chromosomes, was that her husband would leave her aer
hearing the news.
For young people, the issue of infertility can play a role in relation to starting or main-
taining relationships. Bart, for example, would not have been surprised if he and his
wife had separated aer it transpired that he had Klinefelter syndrome and was probably
infertile (see Box 4.2). Other adult interviewees who are infertile reported that this has
or had consequences for their self-image as a partner.
  : ,     
51
Box 4. 2 That’s my bigge st wish and it’s bio logically impossible
Bart, a young man in his thirties, and his wife discovered that he has Klinefelter syndrome aer
a process of medical investigations when his wife did not become pregnant . This syndrome
makes the likelihood of pregnanc y very small. This marked the start of the most dicult period
in his life. ‘In the past, I used to talk with fr iends about “what would be the absolute worst
thing if you had to choose”, and I always had something along the lines of: if you couldn’t have
children. So that all sort of came and hit me together when we were told the news. Really fee-
ling that sense of: wow, that’s my bigge st wish and it’s biologically impossible.’
They began looking for alternative ways of fullling the desire to have children. Using new me-
dical techniques that were available in Belgium for men with Klinefelter s yndrome, an aempt
was made to obtain liv ing sperm cells and fertilise an egg cell. This method proved unsucces-
sful in his c ase. That came as a heavy blow, partly be cause the couple were const antly coming
across pe ople around them who were pregnant and having children: ‘I remember having to
go to a part y with two pregnant women, for example.’ They also saw lots of children in their
working environment. They were married and were regularly asked if they planned to have
children. It was a sensitive question for Bart. He had always been clear that he wanted children
and he had structured his life accordingly. It took him a great deal of eort to abandon that
picture of the future. The thought that their parent s would never become grandparents was
also dicult. In the end they were able to full their desire for children via a donor, and now
have a lile daughter.
Bart thinks he was fortunate in the way that the Klinefelter syndrome manifests itself in his
case, because he has few symptoms compared with other men with the same condition. The
biggest impact for Bart was his infer tility. He takes testosterone in order to combat osteopo-
rosis and other possible physic al consequences. He had to get used to this, and it did slightly
change his appearance and his behaviour, but it has had no material consequences for his
relationship or his friendships.
Accepting the reality of being infertile not only affects people with intersex/ and
their partners, but can also have an impact on members of the social net work. Some of
the interviewees reported that their family and friends oen do not know how to react.
As a result, there may be lile emotional space for dealing with this sadness, or those
affected may feel they are not understood. Box 4.3 describes how Els experienced this.
The inability to fulfil the desire to have children, whether or not as a consequence of
intersex/, can change the nature of social relationships. An unfulfilled desire for
children can be particularly painful or uncomfortable in seings where most adults
have children and where that is the norm. Els found that those around her were unable
to provide support when she needed it. Barbara began focusing more on her career and
Jacqueline sometimes feels lonely and excluded now that her friends are beginning to
become grandparents and withdrawing into their family lives. On the other hand, new
medical techniques and broader acceptance of non-traditional family types mean that
the possibilities for fulfilling a desire for children is increasing for people with a form of
intersex/. Examples include donorship, adoption, fostering, artificial insemination,
egg cell donation, surrogacy and uterus transplantation1.
52
living with intersex /dsd
Box 4.3 O h, now it makes sen se. She has solved her problem.
When Els had still not st arted puberty at the age of 13, her mother had her tested. Chromo-
some screening showed that she had Turner syndrome. Her mother found it very dicult to
tell her this. Her condition meant that egg cell production stopped at an early age, though the
uterus and vagina were present. At the time, the only thing that registered with Els was that
she would not be able to have children. That was a major blow for her, because all the girls she
knew were already t alking about how they would have children later. A number of things now
fell into place, including her short stature (1.55 cm), weak short-term memory, reduced spatial
awarene ss and slower social and sexual development than her peers. It bother s Els that doubts
are sometimes cast on the intelligence of women like her. She is a university graduate, has a
good job and is active as a volunteer. She is sometimes reticent in talk ing about her condition,
because people then go looking on the Internet and nd a long list of possible symptoms,
whereas no one has all those symptoms together. She has found a way of fullling her desire
for children: fostering. Women with Turner syndrome can become pregnant via egg cell dona-
tion, and she knows women with her condition who have experience of this.
During the period that she had no foster children, she oen felt she was not understood, even
though pe ople did try. ‘I now see how keen everyone is to hear my stories about children. It’s
also obvious that I greatly enjoy it. I could spend an hour t alking about it, no problem. And
people also like hearing about it , but there’s also a sense of: oh, now it makes sense. Some-
times I detect something of an undercurrent in myself, along the lines of, yes, now you’re all
willing to listen, you’re happy to hear this. But where were you when, er... when I was trying
to nd a way through it.’ She nds it worr ying that there is le ss and less space in society to be
dierent.
4.3 Social treatment: ignorance, embarrassment and lack of understanding, but
little perceived discrimination
It is difficult to obtain a picture of the extent to which people with intersex/ feel
subject to negative treatment and discrimination. Thanks to their ‘self-management’
through limiting their openness, adapting their behaviour and avoiding certain situ-
ations and locations, they protect themselves against possible negative reactions.
However, it was made clear earlier that not being open and adapting can cause people
to feel lonely and different or make them feel that they are not able to be completely
themselves. Here we look at how people with intersex/ are treated by others when
they do decide to be open. How do people react to the news that someone has intersex/
? Do those reactions have an impact on social relationships? And do people with
intersex/ feel that they are discriminated against and not accepted because of their
condition?
Reactions concerning intersex/ can be related to various aspects: sensitivities
surrounding sex or sexuality, physical appearance, physical limitations and infertility.
The way in which those close to the person affected react can have a variet y of effects:
sometimes a friendship becomes closer, so that people with intersex/ can be more
themselves; sometimes people react with concern, so that those with intersex/ find
themselves having to reassure them.
  : ,     
53
Naima: Because it’s not some thing you can talk about just like that. My t utor was of
Surinamese orig in. She had the same thing, advi sing me not to tell other peo ple. Keep it
to yourself. In other words, what y ou now have is really ver y embarras sing. That’s what I
thought then, too...
Interviewer: Did she ex plain why you shouldn’t tell anyone else?
Naima: Yes, she said that people can react oddly to it. In the end, I did explain in t he class that
I couldn’t have childre n, because I was somet imes absent from school on those da ys. My tutor,
er… ever yone said, ‘she’s never here’ and t hings like that. Something ha s probably happened
Then my tutor began cr ying in the clas s. So she was very conc erned about me, but ev eryone
thought I had some kind of serious illness.
People sometimes ask strange questions out of ignorance or think that the person with
intersex/ is lesbian or transgender. Some people with intersex/ find this hurtful,
because it indicates that they are seen as ‘different’. In Jacqueline’s case, someone once
compared her to a well-known transsexual, and she found that very hard to take:
Just imagin e, she compared me to a tran ssexual. So… […]. Ye s, I found it hurtful t hat my col-
league compared me to a tra nssexual. Yes, it hurt me, I c an feel it now. That was something I
didn’t want. I didn’t want to be a transsex ual. I have no problem with t ranssexuals, a nd that
they do the ir thing. Fine by me. But then I thought: but I’m not like tha t, am I? I just want to
be the same as you. But she couldn’t see that , I don’t think. That confir med for me that I was
different somehow.
There are also examples of people not talking about the condition or ignoring it.
Jacqueline: I think it’s hard for people around me because it’s a sor t of charged subject,
because i t’s about sexu ality; people don’t really under stand it very we ll. They also don’t ask
about it. That bot hers me a bit. Take my parent s, for example, who both have [ physical con-
dition]. People have no problem askin g my mother about that, for e xample acquaintance s
that you only se e at a birthday celebration; they a sk: ‘so, [name], how’s it going with yo ur
[condition] now?’ And my mother t ells them. But people ne ver ask me that quest ion. It’s too
dangerou s or something, I think.
The social treatment of other people is characterised mainly by negative reactions stem-
ming from ignorance, embarrassment and lack of understanding. Callens et al. also
conclude that ignorance and the taboo surrounding sexuality make communication
with others about this subject difficult (2012a).
The impression based on this explorator y study is that the persons inter viewed with
intersex/ do sometimes encounter negative reactions, but do not see this in terms of
non-acceptance or discrimination. Total rejection appears to hardly occur, though hid-
ing the condition and adapting behaviour suggest that those affected are afraid that oth-
ers will not respond in a good way. Whether people with intersex/ would encounter
much non-acceptance if they were to be open and not adapt their behaviour is impos-
sible to say on the basis of this study. The research literature also makes lile mention
of acceptance and discrimination in talking about the social problems experienced by
people with intersex/. Organisations and researchers focusing on human rights do
54
living with intersex /dsd
relate intersex/ to discrimination, but to date have mainly concluded that virtually
no information is available on this (see Box 4.4; Agius & Tobler 2012;  2013).
Interviewees did cite examples of bullying or discrimination that others have experi-
enced, such as girls being accused of being a boy, being excluded and being pelted with
sanitar y towels. However, it is difficult to assess whether negative reactions and discrim-
ination occur frequently.
We conclude that the inter viewees with intersex/ do sometimes encounter negative
reactions and that people with intersex/ adapt their behaviour in order to avoid such
reactions. To what extent they systematically encounter non-acceptance and discrimina-
tion is however impossible to say. It is possible that persons with intersex/ do not
see negative reactions in terms of non-acceptance or do not associate with discrimina-
tion because the people in their social environment do not wish to be deliberately hurt-
ful or to react negatively. Although negative reactions are sometimes painful, people
with intersex/ appear to be able to understand them because it is a complex subject.
More research would be needed to gain a beer insight into how and to what extent
negative reactions are related to perceived or actual non-acceptance and discrimination.
The persons interviewed with intersex/ are less understanding about negative treat-
ment on the part of medical professionals. With the exception of a man who has always
been satisfied with the treatment he has received in specialist medical centres, the in-
terviewees feel frustrated, sad and sometimes angry about how they were or are treated
by medical professionals. Some are indignant that doctors know so lile about their
condition. They talk with a great deal of emotion about poor information, insensitive
communication and discourteous treatment.
The need to increase the knowledge about intersex/ among medical professionals
is broached in virtually ever y interview. A few specialist medical professionals who were
interviewed also raised this point. They reported that medical training devotes virtually
no aention to  and that anything to do with sexualit y is a sensitive area. During
the interviews with persons with intersex/, distressing situations were revealed
which stem from a lack of knowledge or communication skills on the part of medical
professionals. There were examples of doctors who had made incorrect diagnoses, or of
persons with intersex/ being unnecessarily le in ignorance or ‘trapped’ in unsuc-
cessful treatment programmes by doctors with too lile specialist knowledge. These are
rare and sometimes complex conditions, which can be complicated and sometimes also
sensational for doctors. Both people with intersex/ and medical professionals made
mention in the interviews of the importance of specialist medical centres and of medi-
cal professionals being aware of them. The medical practice of these specialist centres
in terms of information provision and knowledge about these conditions has improved
greatly in recent decades. To what extent this is also the case for non-specialist centres is
unclear.
Embarrassment and the taboo surrounding sex and sexuality can make lack of under-
standing or discourteous treatment on the part of medical professionals towards those
with intersex/ extremely sensitive. Comments or slips of the tongue by medical
professionals in relation to someone’s sex or gender identity have a severe impact,
  : ,     
55
sometimes leaving people feeling vulnerable and undermined in their physical integ-
rity. Examples include taking photographs without asking permission, or the presence
of assistants or extra medical practitioners during consultations or treatment sessions
without first seeking consent. The hurt felt by the person with intersex/ then does
not lie (only) in the nature of the treatments or the content of the consultations, but
above all in the way they take place. Jacqueline recounts an old incident that still greatly
affects her emotionally:
Here you can choose bet ween the regional hosp ital or [specialist me dical centre]. So I went.
I thought, I need to go to the bes t doctors, so I went to th at [medical centre]. I saw [medical
special ist] and he dismiss ed it as, er, nonsense. He stu ck his finger inside me and said: you’re
wet enough there, and… ju st nonsense. So he didn’t tell me any thing at all, and I became
unbelievab ly angry… I was so mad tha t even in that specialist cent re, that, that old… doc tor
had yet again no t told me anything. And then … I can still remembe r, my hu sband was with
me, and I was, ye s, I was really very unreasonable.
It is plausible that medical treatments and social treatment of medical professionals are
generally more respectful today. Yet we saw in section 3.2 that medical professionals do
still sometimes treat people in a way that is not appreciated.
4.4 Participation in education, work and leisure activities
Based on the information available from earlier research and the interviews in this
study, it was not possible to obtain an accurate picture of the extent to which people
with intersex/ experience frequent impediments to participation in education,
work and leisure activities. There is no clear picture of all conditions, and where the
consequences for participation are known, the differences between conditions are
considerable. Once again, a distinction can be made between condition-specific conse-
quences (e.g. physical limitations or medical treatment) and consequences stemming
from self-image or actual or anticipated reactions. The impact on participation is some-
times limited to the period in which persons with intersex/ are trying to come to
terms with the news about their condition, and their psychosocial well-being is tempo-
rarily reduced, possibly influencing their functioning at school or at work. Sometimes,
the consequences for participation are longer-lasting and more far-reaching. We give
a few examples here of consequences for participation that were cited by those inter-
viewed for this study.
Those interviewees who were aware of their condition at a young age all found that their
condition had an impact during their school years. Most of them withdrew for a while,
were afraid to be open towards others, adapted their behaviour and felt different or
lonely. This resulted in a negative experience of school, reduced social interaction with
classmates and anxiety about being bullied. For one person, this led to school results
which were so bad that she had to give up her course. It should be borne in mind that all
the interviewees were speaking retrospectively and had received lile or no support as
children or teenagers, nor did they have contact with other young people with the same
condition. Today, counselling is offered as standard in specialist medical centres and
56
living with intersex /dsd
contact with other young people with the same condition is more easily achieved. It is
possible that intersex/ has less impact on participation in school and leisure activi-
ties for the present generation of children and adolescents, but establishing this would
require further research. Sanches and Wiegers come to this conclusion for young Dutch
persons with  in relation to school and participation in sport (2010). These young
people have oen been aware of their condition from a very early age, and with good
medical treatment and use of medication, the impact on their daily functioning can be
limited.
In the small number of conditions involving chromosome variations, it is known that
children can experience both social and cognitive limitations and that this can impact
on their participation at school and in leisure activities.
Lile is also known about the relationship between self-acceptance, self-image, degree
of openness, experience of negative treatment and physical impediments in relation to
participation in school and leisure activities by young people. What is clear is that the
impact of intersex/ on a person’s youth can sometimes be considerable. For Paul, his
bladder exstrophy meant that he had to wear incontinence pads until the age of 15. He
found the secrecy and constantly having to hide the pads difficult; it made him uncertain
and meant he felt different from other boys. His anxiety about negative reactions proved
justified when he took his football trainers into his confidence and told them that he
wore incontinence pads:
But they we re just boys themselves, 18 or 19 year s old. They weren’t the most intel ligent boys,
either, but one tim e they just sat ther e laughing at me. I think I was about 12 or 13 at th e time.
That’s the reas on that I stopped playing football.
Aer undergoing penis construction surger y at the age of 23, he dared to go to the sauna,
to take a shower in public and to take part in group sports again.
Intersex/ can also have consequences at work, but here again no complete picture
is available. Since intersex/ is generally not immediately visible for employers, it
appears to lead to few problems in obtaining work, though one inter viewee did say that
her contract was suddenly not renewed just aer she ‘came out’ to her boss. It is unclear
whether this happens frequently. Sjaan, an older woman with  chromosomes, was
declared unfit for work because of her condition, whereas she herself felt she was capa-
ble of working. This was painful for her, as was the experience of being excluded during
her sporting career (see Box 3.3). It is not possible to establish whether situations such as
this still occur.
The interviewees cited a number of examples of the way in which the condition can
impact on the experience of work or functioning at work, because of physical limita-
tions, new complications, medical interventions or not being open about the condition.
For Jacqueline, a woman with  chromosomes, her condition had a great deal of impact
on her experience at work. For a long time she was not open to colleagues about her
condition, and when she eventually did take the step, the reactions she received from
colleagues were unpleasant, which made her even more reticent about being open. In
her case her physical limitations, the taboo surrounding her condition and the lack of
acknowledgement by colleagues put her under such mental pressure that the company
  : ,     
57
doctor signed her off work for four months. It was difficult to sustain a working life and
she began working part-time. How common it is for people with intersex/ to be
declared fully or partly unfit for work, or for the working environment or type of work to
be adapted because of their condition, is not known.
As regards leisure activities, it is plausible that intersex/ has consequences for par-
ticipation in (group) sports and activities in which the body is visible, such as going to
the beach, a sauna or a swimming pool. It emerged clearly from the inter views that this
does happen, though it was not possible to establish to what extent.
While the consequences for participation were long-lasting for a few interviewees, not
everyone was prevented from participating. Some interviewees experienced problems
with participation when they were younger, but at the time of the interview felt no
constraints at all. In short, the picture in relation to participation is diffuse and not uni-
form. It is difficult to establish whether impediments to participating in education, work
and leisure activities are mainly incidental or more structural nature. It is also unclear
whether there are differences between phases of life and between different conditions,
and which factors play a role. Establishing this would require further research.
4.5 Importance of contact with others with intersex/ and organisation-
building2
One thing that all interviewees with intersex/ have in common (and this is con-
firmed in other research), is that meeting other people with a similar condition or
comparable problems is important. The feeling of not being the only one with the condi-
tion and the ability to share experiences can promote self-acceptance and the ability to
deal with the condition. Medical professionals also acknowledge the importance of this.
According to Hughes et al., this contact prevents social isolation and increases the sense
of being normal (2006). Dutch medical practitioners and psychologists also believe that
support groups and patient organisations can offer a platform for sharing concerns and
experiences (Callens et al. 2012a). The importance of peer contact emerges consistently
in interviews with persons with intersex/ (Alderson et al. 2004; MacKenzie et al.
2009). Two interviewees in this exploratory study recounted the following experiences:
And no one think s it’s weird. No one. Whispers: Yes, oh yes, what’s that like?… Ever yone is
unders tanding. Because of cou rse there’s an awf ul lot going on. You have to imagine: it’s a dis-
order that aff ects women, with a s mall vagina, with no vagina, wome n who have complete 
and so are ins ensitive to te stosterone, who have t o take hormone supplem ents and go through
all that enta ils. So you can imagine what ki nd of stories go the ro unds at these meet ings!
It was tr uly a… Yes, it was a revelat ion for me to sit with all tho se women in a room and find
that recog nition. Being acknowle dged and discovering that I, er…, that I’m not a ‘one and only
freak sh ow’. That group was a sav iour for me. Definitely.
Some people with intersex/ only have a need for contact with others with a similar
condition during a certain phase, for example when they have just learned about their
condition or when they are about to undergo medical treatment. Without exception,
58
living with intersex /dsd
however, the interviewees in this study with intersex/ had a strong need for contact
with others in one or more phases. Some of them did not achieve that contact because
doctors did not tell them about the existence of these organisations or because they did
not exist during their early years. There was also no Internet in those days where people
could look for information. One inter viewee who had missed out on contact with others
during their youth is thankful to be able to give something back by playing an active part
in the patient organisation:
We now also have parents in the assoc iation who don’t even have child ren, who are still
pregnant, c arrying a child that they k now is going to have [condit ion]. I t hink it’s important
that they c an see that there is some one there who has a stor y to tell and who is, let’s say, just
cool and bright and talk s about it freely… That t here is hope for them. That t hey don’t need to
worr y too much that all kinds o f things won’t be possible.
In the Netherlands, contact with others who have intersex/ is currently organised
through condition-specific patient organisations. Examples include the Nederlandse
Klinefelter Vereniging (Dutch Klinefelter Association), ederland (formerly e-
derland, for -), Bijniervereniging  (for ), Stichting -Vrouwen (for
women with ), Patiëntenvereniging voor Blaasextrophie Nederland (for persons
with bladder exstrophy). These organisations organise activities and meetings where
information and experiences can be shared. Some adults with intersex/ also have
contact with Freya, an association for people with fertility problems. Some patient or-
ganisations were originally set up as organisations for parents of young patients, and
their boards oen still consist of parents of children/teenagers with an intersex/
condition. There appears to be a growing tendency in some of these organisations for
persons with the condition in question to play an active role. As the following quotation
makes clear, contact with others with similar experiences can be important for parents:
What I worr y about part icularly is the pare nts. Because I think t hat providing good suppor t for
the [ young persons w ith the condition] begin s with the parent s. But those parents ar e so full of
emotion and have nowher e to tell their story. I think it’s important. B eing a parent is alread y
very t ough, I see that with all my female fri ends. And being a pare nt of a special child, and
espec ially in a societ y where the scope for being different i s reducing, is simply almo st impos-
sible.
The organisations where people with intersex/ can meet each other have to date
been set up mainly as patient organisations. This is related to the historical relationship
with the medical profession and the aention for the medical aspects of conditions.
External funding is sometimes obtained from the  fund (a fund for patient organisa-
tions or organisations for people with disabilities, which is sponsored by the Ministr y of
Health, Welfare and Sport) and sometimes via pharmaceutical companies, again under-
lining the medical focus of these organisations – though they do not make it a condition
that persons actually have to be patients.
The extent to which persons with intersex/ conditions have a need for and practi-
cal access to contact with others with a similar condition is not known. This informa-
tion is also not available for subgroups such as children, adolescents, migrants, people
  : ,     
59
with low incomes or people with physical limitations. There are however signs that not
everyone with intersex/ feels at home in an organisation whose primar y focus is
or seems to be medical. To date, no organisations have been set up in the Netherlands
which specifically target ‘non-patients’ with intersex/. One exception is the advocacy
group , but that does not focus on individuals.  (Organisation Intersex Interna-
tional), the biggest international organisation for intersex persons, which is established
in roughly 20 countries, does not have a branch in the Netherlands. Finally, we would
note that cases are known both in the Netherlands and elsewhere of persons with types
of intersex/ who do not feel or (wish to) behave in a gender conforming way. They
may feel more at home within organisations aimed at transgender persons.
4.6 Conclusion
In chapters 3 and 4 we have shown that intersex/ not only has physical conse-
quences, but can also impact on personal experiences and social interaction with others.
The interviewees with intersex/ do not find it easy to be open towards others about
their condition. They oen think carefully about who they open up to and what they tell
them. They also adapt their behaviour or avoid certain situations so that their condition
remains hidden. Intersex/ can be problematic for relationship formation, a person’s
self-image as a partner or the abilit y to fulfil the desire to have children.
There is embarrassment and a fear of negative reactions. Those reactions stem mainly
from ignorance, embarrassment and lack of understanding. Most of the persons inter-
viewed with intersex/ do not really blame those in their social environment for this
and almost none of them seem to associate negative reactions from others with non-
acceptance or discrimination. Intersex/ can however cause people to feel different,
lonely and not understood. This may be related to condition-specific consequences,
self-acceptance or actual or expected negative reactions, and the fact that it is not always
possible to share concerns among those close to them.
The interviewees with intersex/ are less understanding of lack of knowledge and
negative treatment on the part of medical professionals. Such experiences are highly
sensitive because it is precisely here that they expect to find accurate knowledge and
expertise and to be treated with respect.
Contact with others with a similar condition can be very valuable, because those affected
can be completely open and can be themselves and are able to share information and
experiences. This contact is oen organised on a condition-specific basis.
Notes
1 Uterus t ransplantat ion is currentl y not possible in the Net herlands. This tr eatment could for
example offer possibilities f or women with .
2 To prevent any possibility of t raceability, the quotes by the inter viewees have been completely ano-
nymis ed as regards the inters ex/ condition and the interviewe es’ names.
60
living with intersex /dsd
5 Concluding discussion
The foregoing chapters describe what is known about the social situation of people with
intersex/ and which themes are important. We would stress once again here that
this is an explorator y study. It does not answer the question of how many individuals
experience certain problems. In addition to a literature review, our study was based on
seven in-depth interviews and a focus group of persons with intersex/, inter views
with eight professionals and a number of national and international meetings and
symposia. We would note that the persons with intersex/ who were interviewed
form a selective group and can be regarded as a ‘vanguard’. All of them have undergone
medical treatment and had contact with patient organisations; in addition, many of
them are or have been active in patient organisations. The findings presented here are
therefore not representative of persons with intersex/ in the Netherlands who are
not aware of their own condition or who have never undergone medical treatment.
It became clear during our study that a proportion of the problems or impediments
experienced by the interviewees with intersex/ are medical in nature and are related
to (chronic) physical limitations, including infertility in certain conditions. There are
also problems or impediments that have consequences for the social situation. In this
exploratory study we aempted to identif y all these impediments.
In this concluding discussion, we seek to answer the two research questions formulated
in chapter 1, and put forward suggestions for the possible development of policy based
on the findings in this exploratory study.
The most accurate estimate that we are able to make at this point in time is that the
prevalence of intersex/ in the Netherlands is approximately 0.5%, equivalent to just
over 80,000 people. It is not known how many people are aware of their condition and
have received medical treatment for it at some point.
Summarising, it is apparent on the basis of this study that there are wide differences
between intersex/ conditions and their consequences for people’s daily lives. There
are also substantial differences in the experiences of younger and older generations.
Developments have not stood still in the medical world, and practices such as secrec y
and deliberately providing false information would appear to have died out.
Virtually all the persons inter viewed with intersex/ have encountered problems in
their social situation. They talk about being ‘different’, feeling lonely and experienc-
ing shame and embarrassment. In most cases – either in the beginning or throughout
their lives – they have difficulty in accepting their condition and experience problems
in relation to their health and well-being. If the condition has consequences for their
external appearance, this can have an impact on their self-image as a man or woman.
In addition, intersex/ oen has an impact on relationship formation and on the abil-
ity to have a positive experience of sexuality. This may be due to fear of rejection of their
appearance, their self-image as a man or woman, limited sexual abilities and their own
perception and/or being informed that they are infertile (in some conditions). Infertility
 
61
generally leads to personal sadness, and that is not something that can always be easily
shared with others.
Most of those interviewed find it difficult to be open about their condition with
those around them. They sometimes adapt so that their condition remains hidden.
There is also fear of negative treatment by others, mostly stemming from ignorance,
embarrassment and/or lack of understanding. People with intersex/ encounter this
both in their personal environment and in their contacts with the medical profession.
Finally, this study describes how intersex/ can have consequences for participation
in education, work and leisure activities, though no complete picture can be given of
this. What is clear is that physical limitations and reduced psychosocial well-being can
mean that people sometimes function less well or withdraw, and this can have an impact
on their social relationships with fellow pupils and colleagues, and therefore on their
participation. Puberty, in particular, appears to be a vulnerable phase of life, as this is
a period when sexuality, intimacy and external appearance are extremely sensitive. The
consequences for a person’s self-image, well-being, connection with peers and impedi-
ments to participation at school and leisure activities can therefore be exacerbated dur-
ing this period.
5.1 Perceptions and visibility
It is clear that persons with intersex/ encounter a great deal of ignorance in soci-
ety in relation to their condition. Among the prejudices encountered by the persons
interviewed in this study are the following: persons with intersex/ are something
‘between a man and a woman’; they are not complete men or women; they are inferior or
not normal; they are gay/lesbian; they are freaks; and they all have ambiguous genitals.
Problems experienced by people with intersex/ in their social situation and which
are not condition-specific appear to be closely linked to these perceptions, which in turn
are linked to sex normativity and sensitivities in relation to sex, sexuality and infertility.
In the case of infertility, expectations and the social norm of having children also play a
role.
By ‘sex normativit y’ we mean that a person’s sex is seen as a dichotomy, with just t wo
possibilities, ‘male’ or ‘female’ as the unquestioned norm. Everything that falls outside
this twofold division is regarded as differing from the norm. However, intersex/
shows that, medically speaking, a person’s sex is not an absolute dichotomy. Parallels
can be drawn here with heteronormativity, in which heterosexuality is regarded as the
norm and as natural. Non-heterosexuality deviates from this norm, so that gay/lesbian
and bisexual people become involved in processes of coming out, feeling different and
fear of stigmatisation.
The literature review and interviews with non-medical professionals revealed that
advocates and social science researchers are questioning this dichotomy in relation to
a person’s sex, and therefore sex normativity. It must be said that the persons with inter-
sex/ interviewed in this study did not themselves express this need very strongly.
In most cases they have no desire to abandon the dichotomy, but feel unambiguously
a man or a woman and wish to be seen as normal men or women.
62
living with intersex /dsd
The fact that the phenomenon of intersex/ is relatively invisible in society is linked
not only to ignorance but also to the fact that persons with intersex/ oen wish
to be seen as normal people and barely identif y or present themselves as a group.
Moreover, they tend not to be very open about their condition because of the sensitiv i-
ties described above.
There is some question as to whether more visibility is the solution. People with inter-
sex/, patient organisations and interest groups react differently to this question.
Interest groups and persons active in a number of patient organisations argue that great-
er awareness and visibility of intersex/ in society will have an emancipator y effect,
due to altered perceptions and greater knowledge of intersex/, and consequently a
reduction in the sensitivities surrounding the conditions. They argue that people would
become more accustomed to the existence of intersex/. Raising awareness and
expanding the norms regarding men, women and sexuality would also help change per-
ceptions surrounding intersex/. This could enable people with intersex/ to be
open about their condition without embarrassment, anxiety or reticence.
Others we spoke to in the context of this study expressed fears that more visibility could
lead to more stigmatisation. Most of the interviewed persons with intersex/ are
reluctant to appear very visibly or recognisably in the media. Members of patient organi-
sations say that requests for inter views or media aention are oen difficult to grant
because few people within the organisation are willing to put themselves forward. Some
are afraid of insensitive or sensational aention in the media, fearing that the height-
ened visibility will lead to more stigmatisation. The interviews with persons with inter-
sex/ also revealed scepticism about more visibility of and familiarity with intersex/
; they have accepted that there are taboos and sensitivities. This can in fact be part of
a coping strategy.
An additional dilemma is that greater visibility in societ y could lead to people with inter-
sex/ being seen as a distinct group, whereas most of them do not wish to be seen
in that way. Those interviewed do not see their intersex/ as an identity. They have
a condition, but generally regard themselves as a man or a woman. It is therefore ques-
tionable whether people with intersex/ would benefit from more visibility if this
also meant that demarcation lines between themselves and people without intersex/
 were drawn more sharply.
In short, it is difficult to assess what the effect of greater visibility would be. When con-
sidering the question of whether more visibility would be beneficial or harmful, it is in
any event important to draw a distinction between the indiv idual and societal level, and
between the fact that persons with intersex/ do not feel part of a separate group,
but as a group of individuals do encounter taboos and sensitivities. Whether more open-
ness and visibility would have a positive or negative effect on well-being, self-image,
acceptance and participation can also not be established on the basis of the available
information. It is plausible that more visibility of and knowledge about intersex/
could have a positive effect in the long term if successful efforts are made to reduce
taboos and sensitivities, but this approach also carries risks such as negative treatment
and stigmatisation.
 
63
5.2 Medical practice: need for more knowledge, sensitivity and views on sex
Three issues in relation to medical practice emerged from this exploratory study. First,
the interviews revealed that the knowledge about intersex/ among medical profes-
sionals is generally deficient. Medical specialists also believe that too lile aention is
devoted to intersex/, sex and sexuality in medical training programmes. In the lit-
erature, Sanches and Wiegers (2010), for example, conclude on the basis of their research
among children and teenagers with  that improvement is possible and necessary
in the knowledge of caregivers. As with the care provided to transgender persons, this
demands expertise. The importance of specialist medical centres in the Netherlands is
broadly acknowledged by all concerned. Improving the knowledge of medical profes-
sionals in general is also necessar y, because most persons with intersex/ initially
come into contact with non-specialist doctors and care providers.
Second, almost all interviewees had encountered a lack of sensitivity on the part of med-
ical professionals. Intersex/ is linked to a person’s sex and sometimes their external
appearance, infertility and sexualit y. This is an extremely sensitive area for many people.
They expect doctors to treat them with respect, understanding and empathy, and when
this does not happen they can find this ver y difficult to deal with. It is plausible that the
aitudes of medical professionals today have improved compared with past decades:
some medical interventions are no longer carried out; secrecy is no longer the norm;
and there is more aention today for the ethical aspects of medical interventions and
social treatment (for medical ethics aspects see also Appendix C). Nonetheless, recent
examples of insensitivity still exist. It should also be noted that this may not apply only
for intersex/, but might characterise the medical profession as a whole.
Third, non-medical researchers and advocates point out that the drive to raise the
knowledge of medical professionals should not only relate to medical knowledge and
social treatment, but also to their views on sex. Medical professionals regard intersex/
 as a medical maer, which means that those with intersex/ are regarded as
people with a medical problem who require medical treatment. However, a focus on
medical inter vention in the case of ambiguous sex organs sustains the thinking about a
person’s sex as a strict dichotomy, both in the medical world and in society (e.g. Karkazis
2008; Liao & Boyle 2004a; Wiesemann et al. 2010; Van Heesch 2009). At individual level,
people could benefit from surger y which gives them the appearance of what a woman or
man should look like. According to Liao and Boyle, however, more scope for and toler-
ance of intersex/ will only be achieved when perceptions change as to what con-
stitutes ‘normal’ with regard to a person’s sex (2004a).1 What is regarded as ‘normal’ in
medical circles is based not only on biological criteria, but also on social criteria, neither
of which are fixed. Wiesemann et al. draw a comparison with homosexuality, which was
at one time regarded as a biological and psychological abnormality, whereas this is no
longer the case today. Interest groups and human rights organisations believe that the
aim should be demedicalisation and that the condition should only be treated when this
is medically necessary. Those interviewed with intersex/ cited examples that could
be linked to this. An active board member of a patient organisation is trying to draw the
aention of medical professionals to the fact that ‘not everything that is different is a
64
living with intersex /dsd
problem. And not ever ything that is a problem requires a medical solution’. The indigna-
tion expressed by some interviewees about prenatal diagnosis leading to termination
of pregnancies or other forms of embryo selection (see § 3.1) is experienced by some as
disproportionate medical intervention.
5.3 Gaps in knowledge regarding social situation
Generally speaking, it was possible to establish in this explorator y study that certain
problems occur, but not to what extent. It was also not possible to draw a clear distinc-
tion between subgroups. At the level of social situation, for example, lile is known
about differences between conditions or about which groups are especially vulnerable.
The knowledge of differences based on sociodemographic characteristics such as gen-
der, ethnicity and age is limited. For example, are there differences between men and
women with intersex/ or are the differences mainly condition-specific? Some medi-
cal professionals argue that intersex/ is a ver y sensitive maer in certain migrant
groups, especially if it is accompanied by infertility. These individuals appear not to seek
or find contact with patient organisations. Whether they experience particular problems
in their social situation, could be explored, though these persons will not be easy to
reach for research. Developments in medical practice mean that older generations have
encountered specific problems in their medical and social treatment which are probably
experienced less by today’s younger generations. The social situation of younger genera-
tions may also be expected to be more favourable, though this cannot be stated with
certainty. It would also be interesting to examine whether there are differences between
people who are receiving or have received medical treatment and who are in contact
with others with the same condition, and persons with types of intersex/ who do
not have this experience.
There are some indicators that are relevant for a person’s social situation for which it was
not possible to obtain a clear picture based on the interviews and literature review. For
example, we can conclude that there are signs that people with intersex/ encounter
negative reactions and adapt in order to avoid such reactions, but to what extent there
is evidence of non-acceptance and discrimination remains unclear. There are also exam-
ples of impediments to participation, but the picture is diffuse and incomplete. Do peo-
ple with intersex/ less oen have work? Do they drop out more frequently? Do they
underperform or make other choices in terms of participation opportunities as a result
of their condition or anticipated negative reactions?
Some of these questions could be answered beer using large-scale quantitative
research on the social situation of people with intersex/. In Appendix A, we describe
how such a study might be designed, what its focus might be and what the associ-
ated conditions and challenges are. It also discusses the fact that, while human rights
organisations and medical professionals acknowledge the need for research on the non-
medical aspects of intersex/, no large-scale quantitative research has to date been
carried out from a non-patient-based perspective. The greatest challenges lie in classify-
ing the target group and obtaining a non-selective study population of reasonable size.
The target group is highly diverse and not everyone will be able or willing to participate,
 
65
for example people who are themselves not aware of their condition, people who have
lile interest in participating (for example because they have never had any negative
experiences) or people for whom it is too painful or confrontational, as well as people
who have lile inclination to affiliate themselves with intersex/ or with their own
condition.
We explored the practical opportunities for carrying out large-scale quantitative
research. A combination of recruitment methods would be the best option if new sur-
vey research were to be set up. The cooperation of medical centres is a crucial factor
here. One advantage of this kind of research is that extensive aention could be given
to aspects relating to the social situation, but such research is expensive and time-con-
suming. We also explored how analyses of themes related to the social situation could
be carried out within current and existing patient-oriented research. These options are
cheaper and less extensive. One drawback of these options is that outcomes in relation
to the social situation would be more limited and that recruitment is carried out among
patients. As a result the respondent group, and possibly the outcomes as well, are likely
to be more selective.
Children, adolescents and their parents were largely le out of consideration in this
exploratory study. This is a potentially vulnerable group about which information is
scarce ( 2013). Exploratory qualitative research could provide more insight here.
Finally, we would add the caveat that a number of medical ethics issues were addressed
only summarily because they fell outside the scope of this explorator y study, while these
issues may warrant more aention.
5.4 Pointers for policy development
An exploratory study of intersex/ from an emancipation perspective, as announced
by the Dutch minister with responsibility for emancipation policy, is fairly innovative.
This question, and any policy proposals from this perspective, is related to the scope
and view of emancipation. We do not adopt a standpoint on this question. It was also
not possible on the basis of this explorator y study to establish the degree and severity of
problems occurring in the total group of people with intersex/, whereas that infor-
mation could be important in determining to what extent there is an emancipation issue
here. In this section we look at pointers for policy development based on the findings
on relevant themes, potential problems and gaps in knowledge which have been high-
lighted in this study.
With a view to possible policy development, we would first note that there are sensi-
tivities surrounding the development of specific policy for ‘the group’ of people with
intersex/. The persons interviewed in this study do not see themselves as a separate
group and do not wish to be seen as such. There is a high degree of heterogeneit y; peo-
ple with intersex/ include persons who have received medical treatment throughout
their lives and who have found it to be a major impediment in their personal, relational
and social lives, but also people who are not aware that they have intersex/ or who
experience virtually no consequences as a result of having it. The absence of a clear
group or community makes developing specific policy difficult.
66
living with intersex /dsd
Policy development in relation to problems in the social situation could target the
impediments that stem from normativity, sensitivities and perceptions in relation to
sex, gender and sexuality. There are points of contact here with two groups that are cur-
rently the focus of the national emancipation policy, namely women’s emancipation and
 (lesbian, gay, bisexual and transgender) emancipation. Correspondences with the
situation of  persons include difficult y in being open, low self-acceptance, (fear of )
stigmatisation in society and lile positive experience of sexuality.
Given the correspondences in relation to social problems, the addition of the leer ‘I’
to  is becoming increasingly common internationally in the focus on observing
and promoting human rights (e.g.  Europe 2013; Council of Europe 2013) and in the
foreign policy of the European Union (2013).2 This also applies for the implementation of
foreign policy in the Netherlands (BuZa 2013). Adding an ‘I’ to  is understandable in
the sense that all these groups experience problems because of perceptions in relation
to sex, sexualit y and gender.
However, the issue highlighted above, namely that persons with intersex/ do not
see themselves as a distinct group, would also have to be taken into account in decid-
ing whether adding it to  emancipation is the best means of embedding intersex/
 in Dutch emancipation policy. Most persons with intersex/ who were inter-
viewed in this study say they prefer to distance themselves from  persons because
they are oen confused with them, whereas for them they are totally different groups.
The association with sexual orientation or gender identity is sometimes experienced
as unfortunate or disagreeable, because these aspects are not central to the problems
of people with intersex/. Although the particular condition that people with inter-
sex/ have can influence their ability to have a positive experience of sexuality and
relationships, in virtually all conditions there is no direct relationship with sexual
orientation.
The interviewees with intersex/ feel very far removed from transgender persons.
This applies especially where people with intersex/ feel strongly that they are a man
or woman and behave in a gender-conforming way. Those interviewees who stress that
they are ordinary men or women will feel very disconnected from an expansion of 
to . Persons with intersex/ whose gender identity or gender expression is
more ambiguous may perhaps see more scope for an affiliation with transgenders, but
this did not become clear from the interviews conducted in this study.
Regardless of whether people with intersex/ and transgenders find some affinity
with each other, we would point out a number of clear differences here. Difficult situa-
tions because a person’s legal identity does not correspond with their external appear-
ance generally do not arise in people with intersex/.3 There is also no question of
a shared identit y or community among persons with intersex/. Different medical
ethics issues are relevant for people with intersex/, such as prenatal diagnosis and
medical inter vention at an early age without the consent of the person concerned.
Moreover, persons with intersex/ can suffer greatly from the widespread ignorance
about intersex/ in societ y and among non-specialist medical professionals, whereas
transgenders have become much more visible in recent years and receive more aention.
 
67
Finally, we would note that some of the problems identified in the social situation of
people with intersex/ are linked to medical practice or are condition-specific. There
are correspondences here with groups wishing to draw aention to comparable medi-
cal ethics issues or medical practices. In the case of intersex/, particular aention is
moreover needed for the sensitivities surrounding sex and sexuality and the sometimes
complex medical picture of certain conditions.
Below we set out a number of pointers for themes where it is already clear that problems
occur and where policy aention could make a positive contribution.
Better picture of social situation via research
As became clear in the previous section, there is no complete picture of experienced
non-acceptance, discrimination and impediments to participation. There are other rele-
vant themes where it is also not possible to establish the extent to which problems occur
and which persons with intersex/ are at risk of experiencing problems in their social
situation. If there is interest at policy level in the position of persons with intersex/
in societ y, quantitative research could contribute to the knowledge and assessment
of how problematic the consequences of intersex/ are for their social situation. In
the case of homosexuality, bisexuality and transgender persons, quantitative research
has identified what the frequently occurring problems and impediments are, and this
has given direction to government policy (Keuzenkamp et al. 2006; Keuzenkamp 2010;
Keuzenkamp 2012).
Lile is known about children, adolescents and parents in relation to intersex/, and
their social situation also warrants aention.
Promoting resilience and organisation-building
Section 4.5 describes how sharing experiences and information with others with similar
conditions or problems can help increase the resilience of people with intersex/. In
the Netherlands, this takes place mainly within condition-specific patient organisations
which focus on persons with intersex/ and those close to them (e.g. parents). They
seek to function as a source of good, understandable information. They also aim to build
relationships with and improve medical practice. It is not clear to what extent children
and adults with intersex/ are made aware of the existence of these organisations,
have access to them in practice and feel at home in them.
During a number of meetings organised last year by the Dutch advocacy group 
(Nederlands Netwerk Intersekse//Netherlands Network Intersex/), representa-
tives of patient organisations explored what correspondences, shared interests and
problems and differences there are between the various conditions. Correspondences
include the issues surrounding the ability to be completely oneself and open; the need
for medical professionals to provide good information and have sufficient knowledge;
problems in entering into relationships and fulfilling a desire for children; prenatal or
postnatal diagnosis (see § 3.1). Whether people are troubled by a low self-image as a man
or woman, and which medical ethics issues are relevant, varies enormously depending
68
living with intersex /dsd
on the condition. There are also organisations which do not fully embrace the fact that
they are classified as intersex/ according to the generally accepted definitions.
Sharing of experiences between patient organisations has been found to be useful and
there appears to be a desire to continue this. At the same time, there is a reticence to
operate as a single organisation, because the present patient organisations are so diverse
in their nature and design.
One practical problem is that some patient organisations have difficulties with staffing
and funding. This is because the groups they target are small and potential volunteers
may be impeded by medical problems or the taboo that surrounds their condition. Other
patient organisations have the problem that the condition they represent is not recog-
nised as an independent condition by the  fund (fund for patient organisations or
organisations for people with disabilities, which is aached to the Ministry of Health,
Welfare and Sport), while collaboration with a patient organisation that is not related to
intersex/ would be unthinkable for these organisations because of the sensitivities
and taboos involved. This can jeopardise the diversity and extent of the activities avail-
able for promoting resilience.
Unlike in other countries, there is no organisation in the Netherlands for people who
identify themselves as intersex and who reject a medical perspective. It was not possible
to establish in this study whether these persons, like people with intersex/ who are
exploring or questioning the boundaries of sex and gender conformity, make a good
connection with patient organisations or other organisations (e.g. transgender organi-
sations). It is also unknown how large this group is in the Netherlands. Finally, we would
note that there is an absence of activists willing to engage in a fierce public debate about
human rights issues, whereas there are examples of this in other countries.
More knowledge and sensitivity on the part of medical professionals
The perceived need to increase the knowledge, awareness and sensitiv ity of medi-
cal professionals has already been mentioned in this chapter. Efforts to increase their
knowledge could focus not only on the medical aspects of intersex/, but also on the
social aspects. For non-specialist medical professionals, this would entail knowledge
about intersex/, sex and sexuality, and the existence of specialist medical centres.
Imparting this knowledge could form part of basic medical training and care train-
ing programmes. Promoting sensitivity in the provision of information and treating
patients with respect by all medical professionals could also contribute to a positive
experience of medical treatments. That also applies for aention for questions of medi-
cal ethics (see Appendix C), including views and norms in relation to sex and gender.
Focus on acknowledgement, visibility and awareness-raising
It emerged clearly from the explorator y study that persons with intersex/ have a
need for acknowledgement, both medically and socially. The widespread ignorance
about intersex/ in societ y, combined with the taboo and sensitivities surrounding
it, can make it difficult for people with intersex/ to feel that they belong and are
complete. Taking part in an interview evoked strong sense of acknowledgement in some
interviewees, indicating that this is something they generally do not feel.
 
69
The study also showed that the relationship between acknowledgement and visibility
is a complex one. There are differing views on the question of whether more visibility is
harmful or beneficial (§ 5.2). More visibility of and knowledge about intersex/ could
contribute to reducing taboos and sensitivities, but could also mean that intersex/
becomes classed as a new group or category; as indicated above, this does not appear
to be the wish of people with intersex/. Moreover, not everyone is familiar with the
terms ‘intersex’ and ‘, and not everyone wishes to associate themselves with them.
It is therefore unclear whether specific policy aention aimed at raising visibility and
awareness and changing perceptions of intersex/ in society would have a positive or
negative effect in improving the social situation of people with intersex/. A strong
focus on intersex/ is not the most obvious approach in seeking to increase visibility
and awareness among the general public. In the societal context, an approach based
on normativity and perceptions in relation to sex, gender and sexualit y, and allowing
space for acceptance of diversity in appearance, could be a beer option. This is related
to more general aempts to raise awareness about stereotypes and implicit norms in
relation to sex, gender and sexuality in society, as well as fostering understanding of the
impact on people who do not comply with those norms. When it comes to medical pro-
fessionals, it is vital to talk specifically about  or intersex.
Specific examples include information provision and open discussion of sensitivities
and normativity in relation to sex, sexuality, gender and infertility. In the first instance,
this could be aimed at professionals, and also at a broader public. Positive media aen-
tion was also cited in the interviews. Textbooks on biolog y could mention that there
are more possibilities than ‘male’ and ‘female’; the information provided in biolog y
textbooks should in any event be correct. A website providing accurate information is
important for persons with intersex/ and those around them. This could contribute
to a positive self-image and reduce the fear of negative reactions, because it would be
possible to refer people to a website that does not contain pejorative information.
Promoting knowledge-sharing
In the context of this exploratory study, contact was made with various medical pro-
fessionals, patient organisations and advocates. It was notable in the discussions,
interviews and meetings that the distance bet ween these organisations and parties
is substantial. The use of language, type of knowledge, themes that are important for
them and the way in which intersex/ is viewed from different perspectives, varies
widely. A few examples will show how fragmented the knowledge is and how much
the perspective on intersex/ can differ between organisations and parties. Non-
specialist advocates are strongly focused on human rights and issues of medical ethics,
while their knowledge about the medical aspects of intersex/ is sometimes limited.
Medical professionals and (some) patient organisations oen have lile awareness of
international developments in relation to the promotion of human rights and non-
medical advocacy. For medical professionals and (some) patient organisations, terms
such as emancipation, discrimination and human rights are sensitive or remote con-
cepts, whereas this is the primary terminology used by advocates. At this point in time,
there is no established platform where knowledge and views are shared between these
70
living with intersex /dsd
organisations and parties. As a result, organisations and professionals are sometimes
not aware of developments in various areas in relation to intersex/ which could have
an impact in improving the social situation of people with this condition.
With support from the Ministry of Education, Culture and Science, the  has organ-
ised a number of meetings in the past year at which representatives of patient organisa-
tions and knowledge institutes, a number of researchers and medical professionals came
together to share knowledge and experiences. This was felt to be useful and was appre-
ciated. It also emerged during these meetings that the distance between the different
organisations and parties was sometimes considerable, though there does seem to be a
desire to share knowledge and experiences.
Since its foundation, the  has ser ved as a point of contact for the government.
It disseminates information on national and international developments and places
societal problems in relation to intersex/ on the agenda, including problems affect-
ing people’s social situation and questions relating to medical ethics and other human
rights issues. In other groups which are the target of emancipation policy, advocates
contribute in a comparable way to promoting knowledge, drawing aention to prob-
lems and initiating discussions. Information provision and knowledge-sharing from
different perspectives is important in promoting the social situation of people with
intersex/.4
Conclusion
During this exploratory study, many interviewees were grateful for the acknowledge-
ment and aention their stories received, and for the liing of the taboo surrounding
the problems they encountered as a result of their intersex/ condition. During the
past year, the inter<