Master Thesis
“The momentum is here”
Feminist Sensibilities and Intersex/DSD Activism in the
Netherlands
Master: Comparative Women’s Studies in Culture and Politics
Utrecht University
Supervisor: Dr. B. Boter
Second reader: Dr. M. Zarzycka
Student: Vibeke Otter
Student number: 3901556
Date: June 2014
1
Table of Contents
Foreword
3
Introduction
4
Chapter 1: Methodology
7
Chapter 2: Defining intersex/DSD
12
The body and knowledge
15
The “power/knowledge regime”
16
Consequences of secrecy policies
19
The body and medical practice
20
Demedicalization
23
Intersex organizations in the Netherlands
24
Chapter 3: Intersex/DSD activism
27
Policy and politics
27
Emancipation
29
LGBT collaboration
32
International activism and cooperation
35
Visibility and representation
37
Losing the narratives
40
Conclusion
43
Bibliography
46
Films
47
Interviews
47
Websites
48
2
Foreword
This thesis is part of my master Comparative Women’s Studies in Culture and Politics (now
Gender Studies) at Utrecht University.
I would like to thank dr. Babs Boter for her continuous support and supervision, Margriet van
Heesch and Miriam van der Have for their openness and enthusiasm and my loved ones for
their support.
3
Introduction
As a child I learned that there are two kinds of people: girls and boys, women and men. The
general consensus is that women have XX chromosomes and men have XY chromosomes.
Women have breast and a vagina and men have a penis. However, there are boys who are
born with XX chromosomes and girls who are born with XY chromosomes. Girls born
without ovaries and boys with a uterus. Sometimes it is unclear whether the child has a small
penis or a large clitoris and sometimes doctors have difficulties answering the question “is it a
boy or a girl?”
There are many possible variations on the ‘norms’ of sex. In the Netherlands, approximately
between 80.000 and 106.000 people have such a variety on the ‘norm’ of sex, or “an intersex
condition and/or DSD (Disorders of Sex Development or Differences of Sex Development)”
defined by the Netherlands Network Intersex/DSD (NNID) as: “an umbrella term for a variety
of congenital conditions in which development of chromosomal, gonadal or anatomical sex is
different from the norm” (NNID, Web). The stories of these people are all different, but they
have in common that not many are heard, as intersex/DSD is a quite unknown phenomenon.
There is a taboo on bodies that vary from the ‘norm’ of sex. Therefore, many people with an
intersex condition and their parents report feelings of shame about the topic. For example,
almost all people who feature in the documentary film Intersexion (2012) – which tells the
stories of a few people with an intersex condition and/or DSD – shared the idea growing up
that there was something ‘wrong’ or ‘not normal’ about their bodies, mostly because of the
medical procedures and treatment they received in order to adjust their body into a body that
more typically resembles that of a boy or a girl. Many stories of people with an intersex
condition and/or DSD revolve around feelings of uncertainty and secrecy. Encountering one
of these stories in real life sparked my interest in the topic. This happened when a friend told
me that he did not have clear signs at birth that indicated him a boy or a girl. Growing up as a
girl, he later indicated to have more signs of the other sex. I had never heard of such a
phenomenon by that time and it shocked me how big of a taboo such a condition was. His
emotions that went with letting go of the affliction of keeping this secret and not being able to
share such sensitive personal matter had quite an impact on me. It was only much later that I
came to recognize this story as part of an ‘intersex condition’.
Why had I never heard a story like it before? Even during the gender studies courses of my
bachelor and master programs there was hardly a mentioning of intersex/DSD, although it is a
4
significant topic for gender studies, as it challenges us to rethink concepts such as ‘the normal
body’, femininity and masculinity, bodily autonomy and heteronormativity. It challenges us to
rethink these concepts and the boundaries of these categories. After speaking to a friend who
is a medical student about the concept of intersex/DSD, and learning that she had had one
lesson about it and did not remember much of it, I wondered why intersex/DSD was so
invisible and if there were people or organizations representing the rights and interests of
people with an intersex condition and/or DSD.
The issues at stake are significant. More knowledge about and increased visibility of intersex
conditions and/or DSD cannot only give parents options to choose the best for their child, in
conjunction with the doctors, but can also help break the taboo and reduce the feelings of
shame that people with an intersex condition and their family might have. Furthermore, the
movement for intersex/DSD rights can benefit from more knowledge and increased visibility.
Even though there are organizations and associations that work with and for people with an
intersex/DSD condition, such as NNID (Nederlands Netwerk Intersekse/DSD) and DSD
Nederland, this movement has not yet fully established itself in the Netherlands and is still
working towards more visibility, knowledge and acceptation in order to help represent the
rights and interests of people with an intersex condition and/or DSD.
Thus I explored the current state of intersex/DSD activism in the Netherlands and the ways in
which this activism can benefit from feminist practice. I used the following questions as
guidelines: 1. Who is representing the interests of people with an intersex condition, which
organizations and associations in the Netherlands support these people? What do they do and
what are their goals? 2. What is the quality and which are the effects of the medical approach
to intersex conditions and to which extent are parents able to choose the option they think is
best for their child? 3. How can we break the taboo of having an intersex condition and
educate people? 4. Is it only a matter of time before the interests and rights of people with an
intersex condition are well represented, or are there obstacles that prevent this from happening
and what can be done better in this regard? 5. What are the different perspectives on intersex
from a feminist point of view (i.e. queer theory and transgender theory)? Whereas these
questions are all significant, and have guided me in my research, the central question that will
be the focus of my thesis is on the question of whether feminist practice can be part of the
solution to the problems and why, and which feminist practice would be most beneficial.
5
By analyzing two in-depth interviews with Dutch intersex activists, I want to review the
current state of intersex activism in the Netherlands. After analyzing these interviews I have
proposed a way in which feminist practice can attribute to the representation of interests and
rights of people with an intersex condition and/or DSD. My research question is: can
intersex/DSD activism in the Netherlands benefit from feminist practice?
After discussing the methodology in the first chapter, I will define the concept of
intersex/DSD and several issues involved with intersex/DSD activism in the second chapter. I
discuss the most important concepts in the academic debates, i.e. the medical ‘treatment’, but
also the most important concepts in other forms of representation of people with an intersex
condition, i.e. the film documentary Intersexion (2012) and the fictional movie Both (2005).
In the third chapter I focus on and specify the situation in the Netherlands by explaining what
different individuals and organizations are doing to represent the interests and rights of people
with an intersex condition and/or DSD. How and with which purposes do these individuals,
organizations and others supply information on intersex/DSD? What are their strategies with
respect to breaking the taboos; and raising awareness? What have their achievements been so
far, how will they attempt to obtain their goals for the future? Through analyzing the
interviews, I will highlight the difficulties with intersex activism and tried to focus on how
feminism and feminist practices can help. As feminism supports different kinds of social and
emancipatory movements, i.e. women’s rights movements, LGBT(IQ)-rights1 movements and
ecocritical movements, feminist practices involve projects to bring about social change
(Signsjounral, Web.). For example, feminism and feminist practice gives alternatives for
heteronormativity or support queer and trans movements and LGBT(IQ)-rights. I will propose
a way in which feminist practices (i.e. projects that involve striving for social change) can
attribute to the representation of interests and rights of people with an intersex condition
and/or DSD and thus can be beneficial for intersex/DSD activism. Furthermore, I provided
ideas for further improvement in supporting the rights of people with an intersex condition
and/or DSD.
In the last chapter I conclude the thesis by connecting the content of the previous chapters to
the research question. I have reflected upon the content and provided questions for any
subsequent research.
1
I use LGBT(IQ) because the focus is on the Lesbian, Gay, Bisexual and Transgender people, but the
movements is starting to become more inclusive for Queer and Intersex people as well.
6
Chapter 1: Methodology
In order to gain insight in the topic of intersex conditions and DSD I did a literary study. The
academic texts on intersex/DSD originate in various disciplines and are based on different
viewpoints and assumptions. I have found useful information in journals about feminism such
as GLQ: A Journal of Lesbian and Gay Studies, Feminist Theory and Body & Society, but also
Pediatrics Official Journal of the American Academy of Pediatrics. There is information from
the medical perspective, on ‘treatment’2 of children with DSD3 and research papers on the
effects of performed surgeries. There are also texts from feminist or sociological perspectives,
which include a critical engagement with intersex/DSD as a concept, but also with the way in
which people with an intersex condition and/or DSD are treated in society and by doctors or
medical staff. Sometimes there was almost contradictory information on the same topic, for
example on surgery. I had to read a variety of texts from different disciplines in order to
obtain knowledge about the issues at stake for people with an intersex condition and/or DSD
and the different perspectives on these issues.
When writing on intersex/DSD activism as a person who does not have an intersex condition
and/or DSD, it is important to gain knowledge, perspectives and opinions of people who
know firsthand what it is like to have an intersex condition and/or DSD. I found the voices
and experiences of people with an intersex condition quite underrepresented in academic
articles. There are many texts on the subject of intersex/DSD without (much) input from
people with an intersex condition and/or DSD. I felt this corresponded to the place of women
in (academic) texts a few decades ago: most of the (academic) writing was by and for men
and even when the texts were about women, they often lacked their voice, knowledge,
perspective and opinions. I am aware that this lack is also present in this document, because I
interviewed only one woman with an intersex condition. To obtain more insight in the voices
and stories of people with an intersex condition and/or DSD, I read several personal stories
online, for example on the website “Bodies Like Ours”.
2
I will put this term in parentheses, because it has the implication of a ‘disease’, something that must
and can be fixed, which reaffirms the medicalization of intersex conditions and/or DSD and this is
questionable.
3
I do not use the term ‘intersex condition and/or DSD’ here because in texts from a medical
perspective, the term DSD is most common.
7
Furthermore, I tried to find representations of people with an intersex condition and/or DSD
in (Dutch) media and cultural expressions and manifestations, like films and books. I needed
to look beyond the borders of the Netherlands for the most known representations of people
with an intersex condition and/or DSD, such as the book Middlesex (2002) by Jeffrey
Eugenides, the book Golden Boy by Abigail Tarttelin, the film documentary Intersexion
(2012), the fictional movie Both (2005) and the film XXY (2007). These representations of
people with an intersex condition and/or DSD can be very insightful. However, the
chairwoman of NNID, Miriam van der Have, told me that representations of intersex
conditions and/or DSD in films or books are often made up in order to make the story more
interesting. In short, the representation of intersex/DSD leaves something to be desired: good
and truthful representations of the experiences and opinions of people with an intersex
condition and/or DSD.
In order to gain enough information to be able to answer my research question “Can
intersex/DSD activism in the Netherlands benefit from feminist practice?”, I needed to not
only read about intersex/DSD from different perspectives, but also gain firsthand knowledge
about intersex/DSD activism in the Netherlands, a field in which I have no experience
Therefore, the other methodology I have used is interviewing. I did two in-depth qualitative
interviews with activists in order to gain the right information: according to Hesse-Biber “indepth interviews are issue-oriented” (118). Therefore I did intensive interviews to gain
focused information and rich data on a specific topic (Hesse-Biber 122-123), i.e.
intersex/DSD activism in the Netherlands from an insider’s point of view. Before the
interview I obtained ‘informed consent’ (Hesse-Biber 120) of the respondents by approaching
them by email and explaining what my thesis would be about and adding three sample
questions I would like to ask them. The activists that I have interviewed are Miriam van der
Have and Margriet van Heesch.
Miriam van der Have is chairwoman of the Netherlands Network Intersex/DSD (NNID). She
also has been the chairwoman of AISNederland for five years, now DSDNederland, the
association for people with an Androgen Insensitivity Syndrome (AIS). She is a woman with
AIS and was one of the first women who openly spoke out on television about her intersex
condition (in 2003 in the show Vinger aan de Pols). She is a very outspoken intersex/DSD
advocate, who proudly calls herself an activist. She gives lectures and interviews and as
chairwoman of the NNID she is the representative and spokesperson of the intersex/DSD
movement in the Netherlands.
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The other woman I interviewed is Margriet van Heesch. She is a researcher and teacher at the
University of Amsterdam, finishing her PhD on “the life stories of people who reached
adulthood while living with an intersex condition in the Netherlands” (Profiel Margriet van
Heesch, Web). Van Heesch is one of the few academics working on the topic of intersex/DSD
in the Netherlands. She is central in the academic representation of people with an intersex
condition and/or DSD. She supports the NNID by being a board member (treasurer) and by
providing information:4 she informed for example Suzanne van Rossenberg for the chapter
“Intersex: a ‘new’ target group” of the COC Netherlands 5 Report on LHBTI-children in the
Netherlands (COC 2013). Her personal webpage of the University of Amsterdam states:
With this research I aimed to situate the diversity of lived experiences with medical
interventions in a gender critical and ethical perspective. How do people with intersex
conditions evaluate their lives and incorporate the normative choices, made in the
daily medical practices and discourse. Their stories raised hope and provided
alternatives for past and current medical interventions. Subsequently their stories
showed long-term and ‘patient’ centered insights that are conceivably relocated from
the medical discourse towards a socio-cultural, epistemological and ethical discourse.
Or, according to them: ‘The Life Worth Living’. (Profiel Margriet van Heesch, Web).
These two women – Van der Have being chairwoman of the umbrella organization for people
with an intersex condition and/or DSD and Van Heesch being an authority on the topic at an
academic level – show two different sides of intersex/DSD activism. To be able to obtain the
most information from the interviews I conducted in-depth qualitative semi-structured
interviews. This means the interviews are “conducted with a specific interview guide”: a list
of questions that need to be covered in the interview, but not necessarily in a specific order
(Hesse-Biber 115). I chose this form because I felt I would be able to listen more carefully to
4
This is a two way street of course: Van Heesch obtains information and contacts via the NNID as
well.
5
COC Netherlands is a Dutch association for Lesbian women, Gay men, Bisexual people and
Transgenders (LHBT’s), which is committed to striving for equal rights, emancipation and social
acceptance of LHBT’s in the Netherlands (COC, Web.).
9
the answers and then ask additional questions (instead of checking off a definite list of
prepared questions). This does not mean that there is no agenda, but it leaves room for
spontaneity for me and the interviewee (Hesse-Biber 115-116). I also predicted that, because
of the nature of the topic and the questions, I would have to cut or adjust several questions
during the interview because the information would already be given as part of the answer to
other questions. So I kept paper and pen at hand and tried to engage with the respondent and
showing this by using the interview techniques developed by Hesse-Biber, including “by
listening and providing signs of engagement” (126). This means that I would remain silent,
but gesture with a nod (the “silent probe”) or repeat the respondents answer and asking to
continue (“echo probe”) or say things such as “yes” or “uhuh” to encourage the respondent to
continue (the “uh-huh probe”) (Hesse-Biber 126-127). Sometimes, when I felt the interview
went off topic, I tried to lead the respondent “towards a specific question or touch on a
specific issue” (Hesse-Biber 127).
I am aware that my position as interviewer, with voice recorder and question list, influences
the way in which the respondent feels. It was quite difficult to decide on my role as
interviewer with regard to the respondent, also because there are different opinions on this
role. According to Hesse-Biber, feminist researchers prefer to reduce the hierarchy between
the researcher and the researched (128), but there is also concern “among feminists that the
researcher and the researched are not on the same plane and there is much attention paid to the
interview as a “co-construction” of meaning” (128). It is important to note that there is a
hierarchy between the interviewer and the respondent. When this hierarchy fades and the
interviewer is too close to the respondent this might influence the interview: “closeness alone
can determine whether or not you will obtain the respondents’ subjective understandings and
perspectives” (Hesse-Biber 128).
It was quite difficult to not connect emotionally with the women, because they were very
friendly, personal, open and often humorous. Therefore, sometimes it was hard to maintain
distance from the respondent during the entire interview, especially when they said something
that I felt was quite personal. In one interview I felt that the respondent seemed to forget that
the voice recorder was there and it felt like we were just chatting. This made me a little
uncomfortable, because she told me personal things, also about other topics than
intersex/DSD and I did not want to create “a false illusion that there is no power and
authority” (Hesse-Biber 128). However, in the other interview, the respondent seemed very
aware of the voice recorder: she sometimes even repeated something a little louder close to
10
the recorder and one time she asked for the recorder to be turned off. Most of the time, this
was just to correct something, or to make a joke, so this did not have a big influence on my
analysis. However, it encouraged me to rethink the way in which I would use the information:
the entire conversation could be used in the analysis, but I needed to reflect upon the content
in order to select relevant insights. For example: a personal story might not seem relevant at
first, but it can be exemplary (or even contradictory) for a certain statement in the interview.
Not only my perspective and role in interviews can influence the way in which I process
information and knowledge in the research process. I also need to be able to practice
reflexivity by recognizing, examining, understanding and being accountable for my own
beliefs, values, attitudes, assumptions and feelings and social background, because they
inherently influence the research process and are also part of the process of knowledge
construction (Hesse-Biber 129). Therefore, and because knowledge is socially situated
(Harding 119), I think it is important to state my own background and be accountable for my
own perspective. I am a white, Dutch woman, master student in gender studies, and I have no
experience with having an intersex condition and/or DSD myself. As a feminist gender
studies student my interest in this topic goes hand in hand with the conviction that there is a
need for global social change. I am convinced that it is important to decrease the feelings of
shame about one’s body and expand the narrow boundaries of the category ‘normal’. I feel I
became increasingly in favor of de-medicalization of intersex during the process of writing
this thesis. Having a perspective does not mean one cannot present relevant and objective
knowledge. I here refer to Haraway’s perspective on objectivity:
Feminist objectivity is about limited location and situated knowledge, not about
transcendence and splitting of subject and object. It allows us to become answerable
for what we learn how to see. (583)
It is impossible to be completely separated from one’s values and backgrounds, but this is not
a prerequisite for objectivity. It can be addressed through reflexivity and accountability, both
about one’s sources and own perspective.
In the next chapter I will introduce the topic of intersex and several current debates around
this topic.
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Chapter 2: Defining intersex/DSD
The first thing to do when describing any concept is to define it. Many difficulties have arisen
with defining the different intersex conditions and/or DSDs. First of all, different definitions
have different annotations. A term to describe people with an intersex condition and/or DSD
used to be hermaphrodites or pseudo hermaphrodites, derived from the name of the mythical
two-sexed figure Hermaphroditus. Even though these terms are still used in the media, they
are nowadays considered insulting by people with an intersex condition and/or DSD. The
same goes for the term intersexual, because, according to the Nederlands Netwerk
Intersekse/DSD (NNID) “intersex is not something that you ‘are’, but something that you
‘have’” (NNID, Web). The leading text, Consensus Statement on Management of Intersex
Disorders, published in 2006 by Peter A. Lee, Christopher P. Houk, S. Faisal Ahmed, and
Ieuan A. Hughes, in collaboration with the participants in the International Consensus
Conference on Intersex, introduced the term DSD: Disorders of Sex Development. The
writers state that the labels previously used, such as intersex, (pseudo) hermaphroditism, sex
reversal and gender-based diagnostic labels, were “particularly controversial” (488). They
specify that these labels “are perceived as potentially pejorative by patients and can be
confusing to practitioners and parents alike” (idem). Therefore, Lee a.o. propose the term
‘disorders of sex development’ (DSD), which is “defined by congenital conditions in which
development of chromosomal, gonadal, or anatomic sex is atypical” (idem).
However, according to chairwoman of the NNID, Miriam van der Have, many people she
knows with an intersex condition and/or DSD did not find the term intersex that problematic.
The NNID states that “the imposed name Disorder of Sex Development is seen by many
people with an intersex condition as an example of medicalization” and one of the aims of the
NNID is to fight this medicalization of intersex conditions and/or DSD (NNID, Web).
Nonetheless, the NNID uses the term DSD in their name, because they do not want to fight
over a name and let people choose for themselves (NNID, Web). As mentioned before, the
NNID defines intersex slightly different than the Consensus Statement. According to them,
intersex is “an umbrella term for a variety of congenital conditions in which development of
chromosomal, gonadal or anatomical sex is different from the norm” (NNID, Web).
These two definitions – DSD being defined by congenital conditions in which development of
chromosomal, gonadal, or anatomic sex is atypical, and intersex being an umbrella term for a
variety of congenital conditions in which development of chromosomal, gonadal or
12
anatomical sex is different from the norm – might seem alike, but when looking at the context
there are some important differences to be noticed. The term DSD is a medical term, invented
by doctors, and the word ‘disorder’ seems to state there is something wrong with the person
who has DSD, something that needs to be fixed. The NNID states that intersex needs to be set
apart from medical practice; “Someone with an intersex condition does not have pain, is not
dying from it and cannot be cured” (NNID, Web). This is why the NNID uses the word
‘condition’ instead of ‘disorder’, ‘abnormality’ or ‘deviation’. This nuance is also slightly
visible in the words ‘different from the norm’ versus ‘atypical’.
The NNID rejects the idea that an intersex condition is a ‘disorder’ and therefore uses the
term Differences of Sex Development (NNID, Web). In the future the name might even
change into intersex status instead of intersex condition, to take even more distance from the
medical terminology (NNID, Web). I have noted the term DSD could be seen as
medicalization (which is seen as negative by organizations for people with an intersex
condition), but because of the focus of this thesis and the intention of being inclusive and not
offensive, I will, as the NNID, use both terms and refer in this thesis to people with an
intersex condition as ‘people with an intersex condition and/or DSD’.
The exact number of people with an intersex condition and/or DSD globally, depends on the
used definition. According to the Intersex Society of North America (ISNA) intersexuality
appears in 1 in 1500 to 1 in 2000 births (ISNA, Web). The NNID refers on their website to
Fausto-Sterling who “mentions in her book Sexing the body (2000) a percentage of 1,9% in
which she includes most of the diagnoses that nowadays count as DSD” (NNID, Web).
According to the NNID, there are about 106.000 people with an intersex-condition and/or
DSD in the Netherlands. The Dutch Ministry of Education, Culture and Science assumes there
are about 80.000 people with an intersex condition and/or DSD in the Netherlands. There are
several dozen conditions – how many exactly is impossible to say – that count as intersex
and/or DSD (Accord Alliance, Web). Several conditions are discovered directly at birth.
However, there are also conditions that are discovered later in life, for example during
puberty.
Among the large variation of intersex conditions, one is the Turner syndrome. About one in
every 2500 girls has this condition and it means that they have a deviation in or an absence of
an X-chromosome (Turner Contact Nederland, Web). Almost all girls with Turner Syndrome
are small (Turner Contact Nederland, Web). Another intersex condition is the Klinefelter
13
syndrome, which means that boys and men have one or more extra X-chromosomes. About
one in 500 boys and men have this condition and they do not look different from boys and
men without Klinefelter syndrome. However, this syndrome can result in problems with
speaking, writing, concentrating, memory, coordination, tiredness and difficulties with
articulating their thoughts. Therefore many boys and men with Klinefelter syndrome feel as if
others do not understand them (Nederlandse Klinefelter Vereniging, Web).
Yet another example of an intersex condition is Androgen Insensitivity Syndrome (AIS).
Women with this condition are born as women, but with XY-chromosomes, which, amongst
other things, results in the fact that they have no pimples during puberty and no sweat odor,
but also no ovaries and no uterus so they cannot bear children (DSD Nederland, Web). Other
conditions can result in boys with a vagina, and girls with a large clitoris, which could also be
labeled as a small penis and so on (NNID, Web). I will not discuss all conditions specifically.
However, it is important to note that intersex conditions can manifest itself in different ways
with different effects.
With an estimated 80.000 to 108.000 people in the Netherlands who have one of these
intersex conditions and/or DSD’s the question arises: Where are all these people? In their nota
Standpunten & Beleid (2013) the NNID asks this question and answers it by showing that
these individuals are barely visible in society, either for doctors and researchers or for fellow
people with an intersex condition and/or DSD (NNID Standpunten & Beleid 35). As
mentioned in the previous chapter, individuals with an intersex condition are highly
underrepresented in the (Dutch) media6, although some have indeed appeared as guests in
television or radio programmes and talk shows and stories have been told in magazines (In de
media DSDNederland, Web). Furthermore, there are several books, in which persons with an
intersex condition are featured as a (main) character, such as Middlesex (2002) by Jeffrey
Eugenides, and several (fictional) movies, such as Both (2005) and XXY (2007).7 However,
there is a lack of people with an intersex condition being represented in the (popular) media
and in other cultural expressions or manifestations. To my knowledge, there are no soaps or
6
However, there has been increasing media attention for intersex/DSD, following the very recent
publishing of the Dutch report “Living with intersex/DSD” which was commissioned by the managing
board Emancipation at the Dutch Ministry of Education, Culture and Science and published on June
18, 2014. More about this will follow in the next chapter.
7
Miriam van der Have informed me that most of the intersex conditions in stories told in (fictional)
movies and books have been changed, though, to make the story more appealing or sensational.
14
popular Dutch movies including the topic of intersex/DSD, and no Dutch soap actor or
famous singer (or television show presenter or dancer etc.) seems to be having an intersexcondition and/or DSD. On the internet, there are quite a few hits on the terms ‘intersex’ and
‘DSD’ that do not represent the content well, for example several detailed medical images of
the genitals or other body parts of people with an intersex condition and/or DSD, images of
the mythological figure of Hermaphroditus and sensational articles about celebrities who
might or might not be ‘hermaphrodites’. Fortunately, there are also very extensive and useful
websites of associations for people with a specific intersex condition and/or DSD and also for
associations for people with an intersex condition and/or DSD in general, such as the website
“Bodies Like Ours”. I will discuss the Dutch organizations for people with an intersex
condition later. First I will focus on the different ways in which bodies of people with an
intersex condition and/or DSD are viewed by amongst others doctors and medical
practitioners.
The body and knowledge
The way of ‘managing’ or ‘treating’ the bodies of people with an intersex condition and/or
DSD is related to and influenced by the views on sex differentiation. Van Heesch (2010)
describes the development in the Netherlands of several medical theories on sex
differentiation in her chapter “Do I Have XY Chromosomes?” Her historical overview starts
in the 19th century, when people were thought to have a true sex. Until the mid-1950s it was
believed that this true sex was rooted in the gonads: testicular gonads indicated that the true
sex was male and ovarian tissue indicated that the true sex was female (Van Heesch 129).
This “gonad paradigm” (idem) started to lose its power in the 1940s, when for example the
Dutch gynecologist De Snoo reported on a woman with testicles (130). Consequently, the
views on the roots of sex differentiation changed and in the two decades that followed sex
chromosomes were considered responsible for the sex of the body (Van Heesch 131).
However, it is important to note that this “common biological/deterministic view” (idem)
considered chromosomes responsible for more than just the sex of the body. According to
Van Heesch, they were also held responsible for either male of female behavior, for the
identity of the person, and for opposite sex roles and opposite sex identities and
heterosexuality (idem):
15
The ‘XY’ trope became a signifier for, amongst other things, dominance, aggression,
reason, and sexual desire for women. The ‘XX’ trope signified exactly the opposite:
amongst others, subordination, passivity, emotional and sexual desire for men. (idem)
From the 1960s on, the way in which people with an intersex condition and/or DSD were
‘treated’ has been greatly influenced by the theories of American psychologist John Money
(Van Heesch 132). Money believed that all children were “psychosexually neutral” and could
be raised in either of the two genders (132-133), because he believed that both gender identity
and gender role behavior rooted in a combination of parenting and genital appearance (123).
This basically means that a child that looks like a girl and is raised as a girl, would act as a
girl and identify as a girl. However, states Van Heesch, to distinguish between boys and girls,
“clear-cut heterosexual stereotypes” were required (133).
The theory of Money became internationally accepted and was widely adopted in the global
medical field. This resulted in a specific way for medical practitioners to approach children
with an intersex condition and/or DSD, meaning: medical knowledge regarding the sex of the
newborn – such as significant details of sexed body parts and even sex chromosomes – was
carefully managed or even concealed in communication with children, adolescents and adults
with an intersex condition and/or DSD (Van Heesch 123). Even though Money saw
psychological advantages in being honest when talking to a child about its condition (Van
Heesch 133), this protocol of withholding knowledge and concealing the truth was adapted
worldwide and became standard procedure in the West (idem). A reason for adaptation of this
protocol could be found in heteronormativity. According to Van Heesch the “predominant
cultural homophobic discourse” and preference for heterosexuality resulted in “medical
prevention of homosexuality [...] disguised as the medical prevention of social problems”
(idem): doctors report on not telling the patients about their conditions in order for them to be
able to have normal lives and marriages. Van Heesch refers to this trend of managing and
concealing information as a “power/knowledge regime” (134).
The “power/knowledge regime”
I think that this relation between knowledge and power is reflected well in the fictional movie
Both (2005). This movie helps to understand the reception of the condition and it gives us
16
insight in the emotional effects the “power-knowledge regime” can have on people with an
intersex condition and/or DSD, and their families. The main character in Both is the young
woman Rebeca, who has an intersex condition but does not know it because her parents and
doctors have never told her. They even moved from Peru to the Unites States of America in
order for her to not be confronted with the truth and made up a story about her having a baby
brother who died at an early age. When an aunt sends her an old photo album with pictures of
her family, Rebeca notices that she is never in the same picture as this younger brother.
Combined with the questions she has about her body and the story she heard from friends
about their child who has ambiguous genitalia, she goes to the hospital to pick up her brother
Pedro’s medical records. The woman at the desk of the hospital checks for his dossier in her
computer and finds that the patient Pedro did not die, but underwent a successful surgery.
Then she obtains the dossier, checks it and tells Rebeca that she is only allowed to hand her
the file after Rebeca has made an appointment with the doctor who did the operation.
However, when the medical assistant calls doctor Silver to make an appointment, Rebeca
steals the dossier and finds out that the child named Pedro was not her brother, but was her,
before she underwent surgery. When confronting her mother, her mother denies at first and it
becomes clear that she firmly believed it was for the best to keep this a secret. Later, Rebeca
confronts doctor Silver and the subsequent dialogue goes as follows.
Rebeca: “Why did you make me into a girl?”
Doctor Silver: “Well, we didn’t exactly made you into a girl, we just fixed a mistake. […]
You were assigned the wrong gender at birth. All we did was correct the error. […] You were
always destined to be a woman.”
Rebeca: “How do you (emphasis mine) know?”
Doctor Silver: “There was testicular tissue, but there was also ovarian tissue present. And
sufficiently developed. And we thought there was a good possibility you could have
children.”
Rebeca: “I don’t wanna have children”
Doctor Silver: “Under these conditions we couldn’t allow you to continue as a boy. We had to
intervene quickly in order to avoid problems of identification with your newly assigned
gender”
17
Rebeca: “My newly assigned gender…”
Doctor Silver: “The most appropriate gender for you under the conditions”.
(Both 2005)
Following this conversation, the doctor states there was of course no way of knowing what
Rebeca’s most appropriate gender was and that the doctors who assigned the gender based
their decision on what was on the outside of her body. When Rebeca asks what that was, there
follows a quite intense flashback scene in which she herself as a young child is held down by
one nurse to be photographed between her legs by another nurse. The doctor continues by
asking Rebeca questions regarding her personal and sex life and she imagines hitting him over
the head and leaves before he can examine her.
The representation of this story in the film is significant because it shows both the struggles of
the child and the parent(s) in ‘dealing’ with an intersex condition and/or DSD, but also the
firm beliefs of the necessity to conceal information about this condition (both by her doctor as
well as her parents and family). It also shows the focus on heteronormative relations and the
hierarchical structure of knowledge and power relations, especially in the medical world in
which the patient has little control over the knowledge about her or his own body. I chose this
movie, because it is said to paint a very realistic picture (NNID Social Media, Web). The
script of Both is partly based on the experiences of Bo Laurent, who has an intersex condition
and/or DSD and is the founder of the Intersex Society of North America (ISNA) under her
pseudonym Cheryl Chase. Director Lisset Barcellos is also said to be a person with an
intersex condition and/or DSD (NNID Social Media, Web).8
According to Van Heesch, this protocol of withholding possible distressing information was
common practice in the late 1950s and early 1960s (131)9, also because “Medical discourse
has consistently regulated knowledge and informed the medical conviction that unknowing
was better than knowing” (128-129). Only in the 1970s this view was challenged by new
ethical principles, such as full informed consent and self-determination (134). At first, this
resulted in “a great deal of rhetoric ingenuity” (idem) in which language was used to carefully
8
I have not been able to verify this.
9
The Hippocratic Oath to “do no harm” is one of the reasons for this (134).
18
construct an image of the child’s gender10 and parents were also advised (for example by the
‘gender team’ of the Sophia Children’s Hospital of Rotterdam) to keep the intersex condition
hidden (135). This resulted in secrets and lies, not only to the child, but also to the family and
friends of the child (idem). It was only in 2000 – after learning that so-called patients had
suffered from having no or little information – that the gender team started to recommend that
this protocol of withholding the truth should be abandoned (136-137).11
Nonetheless, this does not always mean that nowadays there is complete openness to people
with an intersex condition and/or DSD about their condition: according to Van Heesch,
nowadays the physician still decides on the information relay (124) and mistakes are abundant
in exchanging knowledge between medical experts and ‘patients’ (139).12 Therefore, it is not
surprising that the accessibility of personal medical information is still an issue of importance
for organizations for people with an intersex condition and/or DSD.
Consequences of secrecy policies
One of the ‘demands’ of the Public Statement by the Third International Intersex Forum –
after due deliberation between representatives of thirty intersex organizations from all
continents – is: “To ensure that intersex people have the right to full information and access to
their own medical records and history” (Public Statement by the Third International Intersex
Forum, Web). Also, the Intersex Society of North America (ISNA) states that, according to
individuals and families dealing with intersex that “honest, complete disclosure is good
medicine” (ISNA, Web). There are clearly negative consequences of this “power/knowledge
system” (Van Heesch 134), and concealing information for people with an intersex condition
and/or DSD and their families is unfair and confusing. It “does justice neither to their
intelligence nor to their right of autonomy” (140).
10
For example: when a girl had testes, they would be called gonads, to keep in line with the feminine
image.
11
They also came up with a three step plan in order to inform girls about their XY condition, which
entailed giving information in steps according to age.
12
Also, it is important to note, that “the use of specialist jargon creates a situation in which physicians
are able to respect the patient’s right to full informed consent while simultaneously denying full
disclosure to the patient” (Van Heesch 137), because of the so-called patient’s lack of knowledge of
medical jargon.
19
This secrecy could also have several other negative consequences: loosing trust in medical
care systems, being deprived of good medical care, and frustrating the relationship between
children and parents (idem). The NNID states that individuals with an intersex condition
and/or DSD seem to experience more psychological problems than other people: “Not being
able to conform to the norms in society results in stigma and feelings of shame” (NNID
Standpunten & Beleid 61). As a result, people who feel stigmatized can experience the
following emotions: shame, isolation, feelings of guilt, secrecy, social exclusion,
discrimination, stereotypes and feeling like the black sheep in the family (62). Accessibility to
knowledge is therefore a very significant issue for people with an intersex condition and/or
DSD. In the next section I will examine another issue of importance: what to do with the
knowledge of having an intersex condition and/or DSD.
The body and medical practice
The previously mentioned views on the gender binary and heteronormativity that underlie the
hierarchically power and knowledge relations are also visible in the managing of people with
an intersex condition by ways of medical practice. An important part of being a person with
an intersex condition and/or DSD is being subjected to medical practice and intervention in
one’s body. This is cause for a conflict between the medical consensus and the view of
associations which represent people with an intersex condition and/or DSD. Naturally, there is
not one way of managing an intersex condition because of the number of variations. However,
medical practice, specifically surgery, is often part of the life of a person with an intersex
condition and/or DSD. Surgery can be necessary for the health of the child, but that is not
always the case. When surgery is not needed for the health of the child, it is called cosmetic
surgery. An example of this is clitorectomy: reducing the size of the clitoris.
In her article “‘But We Have to Do Something’: Surgical ‘Correction’ of Atypical Genitalia”
(2008) professor Roen questions the underlying assumptions of these cosmetic surgical
interventions for atypically sexed children (47) by engaging critically with recent clinical
publications. Roen mentions several reasons for cosmetic surgery on children. Amongst those
reasons is the concern for the child’s wellbeing: the fear that the child will be humiliated and
bullied and the fear that the child may be subject to sexual abuse with noticeable atypical
genitalia (50). Operating early in life has the advantage that the child will not remember the
20
operation and the child will set off from the start on an unambiguous gender path (idem).
Other reasons for cosmetic surgery carried out on children include the psychological effect on
parents who may become “traumatized at the sight of atypical genitalia” and need to struggle
to explain it to babysitters and family (idem). Furthermore, Roen states:
Clinical work with intersex children largely rests on normative understandings about
sexual difference: sex is assumed to be organized into a binary framework and
children whose sexual features do not fit that framework are understood to require
“corrective” surgery or surgical procedures designed to ‘repair’ the atypical features.
(47-48).
This focus on normative binary understandings of sexual difference is also suggested by other
reasons for cosmetic surgery on children, one of them being that a “boy needs to be able to
urinate while standing: this is seen as important for his psycho-social development; his being
accepted by others as a boy; his taking up a masculine gender identity” (50). Furthermore, it is
also seen as important for the child’s gender identity development that the child has “visible
evidence that is consistent with broad understandings about sexual anatomy; a girl does not
have a phallic structure, a boy does have a phallic structure” (idem).
Imaginably, there are concerns amongst people with an intersex condition and/or DSD and
others about this cosmetic surgery. However, many clinicians are reiterating old
understandings that underlie the dominant clinical practices. One of the reasons why these
understandings are not challenged and they are just carrying on with the current treatment is
the lack of good outcome studies showing either what works or what does not work (idem).
According to the NNID, there are parts of the treatment of people with a DSD that are not
rooted in a scientific basis, which is confirmed by doctors and practitioners in scientific
publications and on seminars (NNID Standpunten & Beleid 72-73). Roen states that there is
evidence of outcomes produced by dissatisfied adults with an intersex condition, but this is
“taken as a political statement that does not have any weight as clinical evidence” (49).
Miriam van der Have told me something similar during the interview: if she told a doctor a
personal story of her own experiences or those of someone else, the doctor would call that
anecdotal evidence and therefore, they could not use this as hard evidence to change
procedures.
21
Roen reviews several consequences of clitoral, penile and vaginal surgery stated in long term
research and found that “the relationship between surgical sex assignment and psycho-social
considerations is peculiarly slippery” (52). As mentioned before, the reasons behind these
operations are influenced to a great extent by ideas about gender binaries and
heteronormativity and ideas about a ‘normal body’. A clitorectomy for example, or reducing
clitoral size, is about normalizing the body and even enabling female sexuality and
heteronormativity. The logic behind it goes unchallenged (54-55). Female sexuality or sexual
sensation is not seen as important in these surgeries, because the operation is performed, even
though it is not specifically necessary for the health of the child and it can result in a reduction
of sexual sensations. By penile surgery to create “a penis that is more typical in appearance en
that enables the patient to urinate in a standing position” (57) the operation is both functional
and cosmetic, but it “becomes invested in producing an ideal of masculinity rather than
employing practical means to address a practical concern” (idem).
Consequently, Roen states that sometimes the surgery, with results such as scarring and
emotional impact, can do more wrong than it does right (58). The documentary film
Intersexion (2012) shows several individuals with an intersex condition and/or DSD that live
with the negative consequences of having been operated on during their childhood: they
experience less sexual sensation, but also have the feeling of not being ‘normal’ because they
had to be surgically ‘corrected’ and therefore feel shame about their bodies. However,
according to Roen the experiences of people with an intersex condition and/or DSD are
sometimes perpendicular to medical ideas (58) and she even states that the psychological
issues involved are secondary to the surgical aspects: “psychological concerns are not in any
way positioned so that they may bring the use of surgery into question” (59). To me, this is at
the very least remarkable, because the psychological aspects are reported as important reasons
to operate in the first place.
Roen states that the arguments for cosmetic genital surgery on children “appear to be based
more firmly on popular understandings about sex and childhood than they are based on sound
studies showing reliably good long-term outcomes from the surgery” (51). In addition, they
“rarely reflect an understanding of changing societal views on gender and sexuality” (idem).
Consequently, medical intervention is a big concern for organizations that support the rights
and advocate on behalf of people with an intersex condition and/or DSD and it is important to
examine their perspectives on these medical practices.
22
Demedicalization
In the Public Statement that was drafted at the meeting of the Third International Intersex
Forum (November 29 until December 1, 2013, in Valetta, Malta) after consideration by
representatives of thirty intersex organizations from all continents, medical intervening is
presented as a big concern. The representatives formulated the following demands in order to
change medical interference amongst others:
-
“To put an end to mutilating and ‘normalising’ practices such as genital surgeries,
psychological and other medical treatments through legislative and other means.
Intersex people must be empowered to make their own decisions affecting own bodily
integrity, physical autonomy and self-determination.” (Public Statement by the Third
International Intersex Forum, Web).
-
“To put an end to non-consensual sterilisation of intersex people.” (Idem)
-
“To depathologise variations in sex characteristics in medical guidelines, protocols
and classifications, such as the World Health Organization’s International
Classification of Diseases.” (Idem)
-
“Recognition that medicalization and stigmatisation of intersex people result in
significant
trauma
and
mental
health
concerns.”
(Idem)
Representing the NNID Miriam van der Have and Inge Intven took part in this Forum. The
NNID specified the Forum’s aim for demedicalization: “chancing the social value of a
medical diagnosis in such a way that the patient will become less dependent of the medical
discourse” (NNID Standpunten & Beleid 73). The organization enumerated the following
statements to clarify what they mean by demedicalization13. A doctor should do what is
necessary for the health of the child and, if possible, convince the parents of the fact that it is
important to let children with an intersex condition and/or DSD make their own choices later
in life instead of the parents (Idem). Also, a doctor should be aware of the influences
medicalization/demedicalization can have on the choice of parents for surgery (Idem).
Furthermore, operations that are not necessary for the health of the child and that have better
results when performed at a later age should not be performed at a young age (Idem). Also,
practitioners should not be guided by fear of overprotecting parents. This will both lead to
13
These statements are mostly in line with the views of other big international organizations for
people with an intersex condition and/or DSD, for example “Bodies Like Ours” and the ISNA.
23
operations of which it has been confirmed that they would have been more successful if they
had been deferred, and to more stress and problems for the parents (Idem). Furthermore,
problems that are caused by society (because people with an intersex condition and/or DSD
do not confirm to a social norm) must not be solved within the medical domain (Idem).
The mentioned issues – the relation between knowledge and power in the medical world, the
focus on the heteronormative gender binary, ideas about ‘normal bodies’, accessibility of
information, medicalization of intersex/DSD – are significant in order to understand the work
that organizations for people with an intersex condition and/or DSD have done and still do,
because the debates about these issues have resulted in concrete aims and goals for these
organizations. Furthermore, these issues are at the core of the foundation of intersex/DSD
activism. Because of the power relations and the knowledge concealing protocols that were
part of medical practice, intersex/DSD activism did not exist until recently. Many people with
an intersex condition and/or DSD have felt they were the only ones because they did not
know others with the same story.14
This started to change after the rise of the internet and the wide accessibility of information
and online forums, which was the moment when the intersex activism movements started to
arise as a result of people meeting each other. Miriam van der Have told me a similar story
about the Netherlands. When the downsides of John Money’s theory became visible and
people realized that ‘lotgenotencontact’ (contact between people with an intersex condition
and/or DSD) indeed was important, the Erasmus Medical Centre in Rotterdam sent a letter to
all their contacts about a meeting at which an association would be founded. In my next
section I will examine which organizations work for people with an intersex condition and/or
DSD in the Netherlands and what their aims and goals are.
Intersex organizations in the Netherlands
There are several organizations in the Netherlands that work for people with an intersex
condition and/or DSD: Bijniervereniging NVACP, DSDNederland, Nederlandse Hypofyse
Stichting, Nederlandse Klinefelter Vereniging, Stichting MRK Vrouwen, Triple-X Syndroom
Contactgroep, Turner Contact Nederland, XYY Vereniging and Erfocentrum (NNID, Web).
The NNID bases this list on a broad definition of intersex, which includes the different
14
This is documented well in the film documentary Intersexion.
24
conditions covered by the term DSD as mentioned in the Chicago Consensus document of
2006 (NNID, Web). Most of these organizations focus on people with a specific (or
sometimes less specific) condition (“patientenorganisaties”). Several organizations – the
Bijniervereniging NVACP and the Nederlandse Hypofyse Stichting - use the terms “patients”
and sometimes even “disease”. These organizations differ in number of members, aims,
activities, professionalism and the amount of funding they receive. These organizations have
in common that they are founded by people with the condition or by their parents. This is
similar in the rest of the world: many intersex associations and activist groups are founded by
people with an intersex-condition and/or DSD. This emanates from the feeling that there are
things that need improvement. When looking at the aims of these organizations three focus
points clearly stand out:
1. Representing the interests of their members (and in some cases specifically also of
their family). The Nederlandse Klinefelter Vereniging even states that they strive for
“better care and treatment and a better quality of life. In short, for a better life with
Klinefelter's syndrome” (Klinefelter.nl, Web).
2. Provide information on the specific condition, either to the public (to create more
awareness and attention) or to the members (in order to inform them about their
condition, for example about medical news).
3. To facilitate the connection between members (for example at events where members
can meet each other, or via email groups or forums).
Van der Have states in the interview that all these organizations combined have about
1200/1300 members. Nonetheless, she explains that not all organizations are active; several
are sleeping and only few organizations receive subsidy. Sometimes organizations are advised
to merge with other organizations. This might seem a good idea, for example because of the
same factors that cause both conditions. However, that is of no use to the members of the
organizations, because they do not have the same questions. There are organizations which do
not even mention the term intersex or DSD, even though the conditions are mentioned in the
Chicago Consensus Document (NNID, Web): several ‘patient’ organizations have difficulties
25
with the definition of intersex condition and/or DSD and therefore do not want to be part of
this definition.15
In addition to these different organizations with different perspectives, there is the Dutch
umbrella
organization
the
NNID.
The
NNID
aims
to
promote
the
equality
(“gelijkberechting”) of people with an intersex condition and/or DSD, to promote their
visibility in society and to represent their interests. Its focus is mainly on promoting political
change for the group of people with an intersex condition and/or DSD (NNID, Web). In the
following chapter I will examine the way in which Dutch intersex/DSD activism – in the form
of these organizations, but also in other forms – tries to reach their goals and the ways in
which this activism can benefit from feminist practices.
15
However, Van der Have stated in the interview that they are already included, because their
members have conditions that count as a DSD.
26
Chapter 3: Intersex/DSD activism
In the previous chapter several important issues for people with an intersex condition and/or
DSD have come to light and I have briefly outlined which organizations in the Netherlands
support the rights and interests of, and advocate for, people with an intersex condition and/or
DSD. In this chapter I will examine the work these organizations and other forms of
intersex/DSD activism have done up until now, their goals for the future and their strategies to
obtain these goals. As mentioned before, I have interviewed researcher Margriet van Heesch
and NNID chairwoman Miriam van der Have in order to obtain direct and inside information
from people who work for people with an intersex condition and/or DSD. Most importantly, I
will focus on the ways in which feminist practice can support intersex/DSD activism.
Feminism supports different kinds of social and emancipatory movements, i.e. women’s
rights movements through the three feminist waves, LGBT(IQ)-rights movements through
feminism and gay and lesbian studies and queer studies, ecocritical movements through
ecofeminism. Therefore, I claim that intersex/DSD activism can possibly benefit from
feminism as well.
As mentioned in the previous chapter, intersex/DSD activism takes place on different levels
and in a variety of topics. It is about supporting the (social) interests and rights of people with
an intersex condition and/or DSD and to emancipate these individuals and make them more
visible in society. However, there are also very concrete goals, for example in the field of
medical practice and justice. I have separated the different – although overlapping – topics in
order to outline both the perspectives of the interviewees on these topics and the goals for
activism that comes with this topic as well as the obstacles and strategies involved in trying to
obtain these goals.
Policy and politics
Before the foundation of the NNID, there were only patient organizations for people with an
intersex condition and/or DSD. As mentioned in the previous chapter, the goals of these
organizations are mostly representing the interests of their members, providing information
and facilitating the connection between their members. One of the obstacles for intersex/DSD
activism in general is that there is not one intersex/DSD community in the Netherlands, even
though there are several patient organizations that are quite large. A reason for this lack of
27
community is that there is little discussion between the patient organizations. Also, the
differences in approach can be quite large. Mainly because of the differences in conditions;
people with an intersex condition and/or DSD have different experiences, and therefore
different questions and needs.
In order to be able to achieve political change and influence policy making, it is important to
bring these organizations together to represent a big and diverse group of people. Therefore,
the umbrella organization NNID was founded a year ago in July 2013, amongst others by Van
der Have. She had been chairwoman of the organization DSDNederland (which used to be
AISNederland) for five years, and after that she decided that a more overarching type of
organization was needed; something more political and less medical or not even medical at all
(Van der Have, interview 2014). The NNID is directed to influencing politics and
policymaking. They want to be an umbrella organization and therefore they try to be inclusive
in terms of all intersex conditions and/or DSDs. Furthermore, they need to work with people
and organizations with different but relevant expertise. For example: they obtain the views of
legal experts in order to review if the current legislation protects people with an intersex
condition and/or DSD against discrimination. Therefore, the members council of the NNID is
important. This council consists of representatives of five patient organizations and
representatives of Movisie, Rutgers WPF. In addition, they are in contact with Artikel 1 (these
are organizations focus on the topics of emancipation, sexuality and discrimination).
To overcome these differences and to be able to achieve political change, inclusion and
cooperation are very important strategies in intersex/DSD activism. Not only in the board of
the NNID, but also in the members council and internationally: according to Van der Have, “it
is extremely important to allow for other people’s wishes” (Van der Have). Van der Have
gives an example: when the growing hormones disappear from the insurance, this is a
problem for women with Turner Syndrome, but not for women with AIS, and “then the latter
need to say: this is not important for us, but we want it for you”. Inclusion is the reason for the
NNID to add the term DSD to their name and add the I to LGBT for people who want that (I
will explain this in the section on LGBT(IQ)). There are parallels with feminism in the sense
that the issues of being inclusive and overcoming differences have also been important
struggles in feminism, for example: at first feminism was not inclusive for non-heterosexual
women or black feminists.
28
Apart from the fact that the different patient organizations have different issues to deal with
and do not work together very well, there is another problem for intersex/DSD activism in the
Netherlands. Advocates for people with an intersex condition and/or DSD are dealing with
three ministries: the patient organizations receive funds from the Dutch Ministry of Health,
Welfare and Sports, the organizations that are focusing on LGBT are mostly funded by the
Dutch Ministry of Education, Culture and Science and they also work towards changes in the
area of the Dutch Ministry of Security and Justice. However, the NNID is neither a patient
organization nor a LGBT organization. That is why they strive for funding for independent
advocacy in order to be able to discuss political policies on an equal level (NNID Standpunten
& Beleid 95).
Because the NNID advocates demedicalization of intersex conditions and/or DSDs, they have
rejected the help of the fund for patient and disability organizations (Fonds PGO) of the
Dutch Ministry of Health. However, the initiators realized that they eventually were going to
need this funding and the Dutch Ministry of Education, Culture and Science advised them to
consider it. This meant that they had the opportunity to advocate the emancipation aspect of
intersex/DSD at the Dutch Ministry of Health. The emancipation aspect of intersex/DSD may
become more important at the Dutch Ministry of Health and this could result in funding from
the Dutch Ministry of Education, Culture and Science as well. Van der Have is very proud of
these developments that have occurred only in the last year, and she sees that broadening their
playing field is important to be able to have as much influence on politics and policy making
as possible. Very crucial in this process is the Emancipation Letter of the Dutch minister of
Education, Culture and Science, Jet Bussemaker. I will go into this letter in the next section.
Emancipation
The starting point for the foundation of the NNID was the publication of the “Main Lines
Letter Emancipation Policy 2013-2016” (Hoofdlijnenbrief Emancipatiebeleid) by the Dutch
minister of Education, Culture and Science, Jet Bussemaker. In this letter Bussemaker states
she wants to reconnoiter four new themes, amongst others the topic of intersex. She wants to
examine if intersex should obtain a place in the emancipation policy and if there are social
bottlenecks for people with an intersex condition (Bussemaker 11-12). In order to be able to
answer this question, an exploratory study was needed and the findings of this study by the
Dutch Sociaal Cultureel Planbureau are published recently (June 18, 2014). The implications
29
of this report are not clear at the moment of writing this thesis. However, for the NNID the
outcome of this study is very important: both Van der Have and Van Heesch mention this
report in the interviews. Van der Have even states that the future of intersex/DSD activism in
the Netherlands depends highly on this outcome: if the Dutch government does not recognize
an emancipation aspect to the situation of people with an intersex condition and/or DSD, this
means that there probably will not be any funding and then they would not be able to continue
their work. However, in the “Main Lines Letter Emancipation Policy 2013-2016” Bussemaker
states that emancipation policy since 1985 centers around the following four themes: equality,
autonomy/independence, freedom of choice and responsibility (4). I would say that these
goals and sub goals are all applicable to people with an intersex condition and/or DSD.
Therefore, I assume the exploratory study will result in accrediting intersex/DSD with an
emancipation aspect. This is significant because without this acknowledgment the NNID
cannot continue to do the work they do now (Van der Have, Interview 2014).
One of the aspects of the recommended exploratory study was notable. De Nennie from the
Dutch Ministry of Education, Culture and Science started to investigate the topic of
intersex/DSD by engaging with patient organizations, because there were no other
organizations working with intersex. This was one of the reasons to found the NNID. Van der
Have states that she does not think that patient organizations are a good starting point for
advocating the rights and interests of people with an intersex condition and/or DSD in the
areas of politics and emancipation. Her main reason is that change and emancipation will not
come from within a certain framework. People can be quite happy with the current situation
because that is what they know. She states that chances are that within a patient organization
people are indoctrinated by the way in which doctors think about intersex/DSD. Often in the
interviews Van der Have links the emancipation of people with an intersex condition and/or
DSD to the developments in women’s emancipation. She explains that there are many
examples of people from a specific group (such as with the topic of hysteria amongst women)
asking for medical treatment, because they are indoctrinated that the condition of their body is
wrong and it ought not to be this way. Although Van der Have does not think emancipation
starts with patient organizations, she does state that these patient organizations are of much
value for both people with an intersex condition and/or DSD as for the NNID.
Furthermore, the fact that the Dutch Ministry of Education, Culture and Science started to
investigate the topic of intersex/DSD by consulting patient organizations, they ignore a very
important part of the discussion: the question whether individuals with an intersex condition
30
and/or DSD are patients. Both Van der Have and Van Heesch mention medicalization as one
of the most important reasons why emancipation of intersex/DSD needs to obtain more
attention16.
Through experiencing the preparations for the exploratory study, Van der Have’s stance on
emancipation was able to develop. Not only did she focus on political change through an
umbrella organization instead of through patient organizations, she was also challenged by
questions she received from the researchers of the Ministry. One of the most important
questions for her was “do people with an intersex condition and/or DSD want to emancipate”?
At first, she did not have a specific answer to this question, other than pointing out the number
of people involved, the wrongdoings these individuals experience (such as unnecessary
medical intervening and concealing the truth about their bodies), the secrecy and feelings of
shame. However, this did not exactly answer the question. In order to do so, Van der Have
reflects on the progress the women’s movements have made, such as being able to choose for
a carrier instead of or next to being a mother, not having to quit one’s job after marriage and
having equal rights to education. Then she continues explaining that one “does not bear
thinking of someone asking this question” (whether or not these women wanted to
emancipate) before making decisions that are necessary to improve the rights and interests of
a group of people.
It is therefore important to provide a better way of approaching the issue of emancipation. In
order to obtain the goal of emancipation, it is important for intersex/DSD activists to think not
only from within the boundaries of fixed ideas and values or within institutions, because then
it is much more difficult to reach goals outside of these boundaries. Furthermore, it is
important to not take ‘patients’ as a starting point, but the interpretation of the ideas of
emancipation that the intersex/DSD activists have.
One of the strategies of Van der Have is to point out the privileges that the policy makers
have who asked her the question “are people with an intersex condition in need of
emancipation?” She wants to emphasis that they have these privileges – such as being able to
work as a woman and having a powerful job – because of the fact that there were people who
advocated women’s rights and did not ask the question “are they in need of emancipation?”
in spite of the fact that several institutions or organizations (i.e. the church) thought they were
16
Something Bussemaker seems to agree on in her letter, as she mentions “unnecessary medical
intervening” (11-12) as an issue for people with intersex conditions and/or DSD.
31
not Amongst other strategies are: searching for input from other areas of expertise (as
mentioned in the previous section), joining emancipatory movements like the LGBTmovement and working together with international organizations. I will go into these topics in
the following sections.
LGBT collaboration
One way of promoting emancipation for people with an intersex condition and/or DSD is to
engage with other emancipatory movements. One could say that the ideas about emancipation
that Van der Have and Van Heesch have also apply to the LGBT community. Internationally,
the I of intersex is often added to LGBT. However, this is cause for debate amongst people
with an intersex condition and/or DSD. The NNID states that this development is not
necessarily requested by people with an intersex condition and/or DSD (NNID Social Media,
Web). There are both benefits and disadvantages of adding the I to LGBT.
Even though she states that the gay and lesbian community has been marginalized for so long
that they understand the marginalization and they have the power of numbers, co-founder of
“Bodies Like Ours”, Betsy Driver, is skeptical about adding the I and sees more
disadvantages than benefits of this collaboration. She states in an interview that intersex is not
a gay and lesbian issue, even though there is a high number of a gay, lesbian and bisexual
individuals amongst people with an intersex condition (Betsy Driver (BLO) on adding an I to
LGBT, Web). In her opinion, adding a D of Diabetes makes just as much sense as adding an I.
Furthermore, it can have a stigmatizing effect and there is a possibility that it can result in
people with an intersex condition and/or DSD avoiding intersex organizations because they
are tied in with LGBT communities and they feel they cannot identify with these
organizations. Therefore, according to Driver, adding the I to LGBT can work towards
marginalization and further increases the secrecy they want to decrease (Betsy Driver (BLO)
on adding an I to LGBT, Web).
Van der Have shares this opinion partly and she is also not quite sure about this collaboration.
In the interviews she explains why she is hesitant. She thinks that the I can be overlooked
when added to the term LGBT17 and adds to the issues of Driver that a possible association
with the LGBT community could be a reason for parents to choose for surgery. However, she
17
“At the moment, the I still stands for ‘invisible’ or ‘ignored’” (NNID Facebook, Web)
32
underlines the similarities in fear of ‘coming out’ and keeping secrets between gays and
lesbians and transgenders. However, Van der Have herself indicates her very pragmatic stance
in stating that internationally the I is already added and “if you do not join, you do not have
influence” (Interview 2014).
She draws parallels with inclusivity and patient organizations. Even though there are only
about 1000-1200 people with an intersex condition and/or DSD who are members of a patient
organization and the costs for membership of these organizations are very high, they are still
maintained. If it is important for the well-being of a few people, one must try and include it.
Therefore, the NNID is not opposed the inclusion of the I in LGBT although they state the I
does not belong there a priori.
In using this collaboration with other emancipatory movements, like the LGBT one, it is very
important that the added area is given meaning. People with an intersex condition have much
to catch up with in the key areas of the government’s emancipation policy: autonomy,
defensibility and equality. However, LGBT organizations have no or little expertise as to the
topic of intersex/DSD. An obstacle is that governments are going to “listen to people who
have the best interests at heart for people with an intersex condition, but have no idea about
the realities at play” and this needs to change (NNID, Social Media). The NNID is therefore
“in contact with individuals and LGBT organizations to both explain what people with an
intersex condition deal with and to investigate how they can be heard in the future” (NNID,
Social Media). These issues of inclusion of the I in LGBT have parallels with inclusion in
feminist movements.
An important issue with inclusion in feminist movements is that in order to be able to speak
for all women, the feminist movement needed to become inclusive for all women, including
for example lesbian women and women of color. The concept of intersectionality has been an
important strategy in feminism. There are always multiple perspectives at play: in addition to
gender, one must also take into account, for example, sexuality, race, ethnicity, (dis)ability,
etcetera. Joining the LGBT-movement can be helpful for intersex/DSD activism because of
the power to enforce a more inclusive and intersectional approach to policy making and
representation. I think the queer movement in particular can be inclusive of people with an
intersex condition and/or DSD, because as Morgan Carpenter, secretary of OII Australia,
states “Intersex people have queer bodies” and this embodiment can inspire queer identities
(NNID, Web). According to Carpenter, people with an intersex condition and/or DSD
33
challenge the binary worldview (the male-female dichotomy) (NNID, Web). Consequently,
people with an intersex condition and/or DSD could benefit from feminist views that
challenge this dichotomy and refer to gender and sex as “performative” (Butler) and fluid.
In my opinion it can thus be beneficial for intersex/DSD activism to work together with the
queer movement, in which I read queer “as a term of self-determination” (hoogland 101). The
queer movement is based on queer theory that questions fixed categories (hoogland 101) such
as the male-female gender dichotomy and categories of sexualities. According to hoogland
(2009), the term ‘queer’ can be seen as “a term of pride claimed by sexual ‘deviants’
themselves, a term of alternative self-identification” (101). Therefore, I think the queer
movement can attract several people with an intersex condition and/or DSD, because for
example several people in the documentary film Intersexion (2012) states they have trouble
with identifying themselves and their sexuality.
In addition to joining forces at the level of identification and emancipation, there are also
concrete examples of LGBT policies that can contribute to intersex activism. For example, the
transgender community has fought long for the possibility to change one’s documented
gender by going to the town hall with a doctor’s note, and even though there were
‘mendacious arguments’ against this policy such as rising crime figures, the policy is adopted
and will be implemented in the near future (July, 2014) (Van der Have, Interview 2014). In
cases of people with an intersex condition and/or DSD, there are similar problems with
assigned gender but they cannot make use of this possibility. The only option for them is to go
to court in order to change their gender18, which is expensive because you need a lawyer and
there is a heavy threshold to go to court, both for the parents as well as for the child (Van der
Have, Interview 2014). The NNID will write to Dutch State Secretary of Security and Justice
Teeven to obtain this free, easy, accessible policy not only for transgender people but also for
children with an intersex condition and/or DSD. This shows that promoting emancipation and
equal rights for people with an intersex condition and/or DSD can benefit from an
engagement with other emancipatory movements such as the LGBT movement or the queer
movement. In the next section I will examine how international cooperation can support
Dutch intersex/DSD activism.
18
By using the “Misslag” article.
34
International activism and cooperation
In addition to cooperation with LGBT, intersex/DSD activism in the Netherlands needs to
search for international cooperation, for several reasons. The NNID now consists of six
people: three board members, one secretary who arranges all appointments and two people
who translate the reports in English. It is important to gain international recognition, in order
to achieve more in the Netherlands (Van der Have, Interview 2014). Also, international
cooperation can help with funding. For example, Van der Have’s participation at the
International Intersex Forum was funded by the International Lesbian, Gay, Bisexual, Trans
and Intersex Association (ILGA).
The international developments on the area of intersex/DSD and results of activism vary.
According to Van der Have, the Netherlands have good gender legislation, compared to the
rest of the world, but is not in the forefront in terms of policymaking on the subject of equal
rights for people with an intersex condition and/or DSD (Interview 2014). According to the
NNID the Netherlands is lagging behind international developments, for example policies in
Australia (NNID, Web). This is also one of the reasons to keep in contact with international
intersex activists and keep track of and report on several important international
developments. Also, because of these international developments, it is very important to
ensure influence at an international level, and not be led by what has already happened. An
example of this is the following.
Van der Have told me in the interview that there is a testing technique for parents in the
Netherlands who know they are genetically charged: by obtaining an IVF treatment, the eggs
can be tested in vitro. This is called “Preimplantation Genetic Diagnosis” (PGD, Preimplantatie genetische diagnostiek). There are guidelines for which genetic disorders are
allowed to test on and new disorders have to be approved for testing by a commission. For
example, it is agreed on that one cannot test on the sex of the child. The NNID found out that
there has been testing on Congenital Adrenal Hyperplasia (CAH) (Adreno Genitaal Syndroom
[AGS] in Dutch), which has never been approved and allowed as ‘genitical disorder’ to test
on.19 This news is a big issue in intersex/DSD activism and it is important to obtain
knowledge about this in an early stage because “when you are late, it will have become
19
The reason for this was that parents wanted to do this test. However, this is not in line with the
guidelines, in which is agreed that the suffering of the child should be leading and not the wish of the
parents.
35
accepted policy” (Van der Have, Interview 2014). Therefore, it is very important to share this
knowledge internationally. Van der Have for example warned other countries such as
Australia for the problems of PGD at an international conference.
However, it is not easy to find solutions for medical practices that one considers wrong, such
as PGD or the surgeries discussed in the previous chapter, and this is a significant part of
intersex/DSD activism. One of the problems Van der Have mentions is the fact that people
with an intersex condition and/or DSD ask for these operations themselves. The question of
“what is normal?” is at stake for many people, also for people without intersex conditions
and/or DSD. This question and the idea of the ‘normal body’ pressures both society and
parents. There are doctors who do not want to ‘fix’ or change bodies, however, they are
pressured by parents and patients. Roen (2009) explains this tension by stating that clinicians
have to deal with two intertwined aspects of their role: they are on the one hand seen “as
responding to individual patients’ needs or requests, rather than seeking to engage in social
change movements” and on the other hand, they are pressured to change their ways of work
by people with an intersex condition and/or DSD who want to bring social change (258).
One of the strategies for intersex/DSD activism to influence medical practices and to deal
with this double role of clinicians is to give the medical practitioners information and explain
that there is a problem with for example unnecessary surgery, and advise clinicians to discuss
their views more often with each other. Van der Have mentions an important issue in this
regard about accepting children as they are born. There are parent who choose abortion when
they find out their fetus has an intersex condition and/or DSD. According to Van der have, it
makes a difference if the woman hears this news from a gynecologist or a genetic specialist,
because the last one might put more emphasis on the fact that a child without genetic
variations does not exist and these are necessary in human development (Interview, 2014). In
this regard, it could be a strategy for intersex/DSD activism to inform parents and clinicians
on the emotional aspect: showing that there are of course questions and difficulties, but that
people with an intersex condition and/or DSD are happy (Van der Have, Interview 2014).
Fortunately, the communication between doctors and patients is better than it used to be,
especially because of younger doctors who are more open to communication (Van der Have,
Interview 2014).
Moreover, the way in which clinicians and patients view intersex conditions and/or DSD and
‘treatments’ like surgery can be influenced by research. However, there is a lack of research
36
and a lack of money to do research. According to Van der Have, most research on women
with the condition AIS was done because of the fact that these women could function as a
control group for research that was focused on other things, for example for research on
women’s sexuality, women with AIS were a control group to exclude another factor. Specific
research in the field of intersex conditions and/ or DSDs is important for activism, because
other research can reinforce the narrow views and can result in scientific cherry-picking. Van
der Have stated that “someone who lost his right arm is not necessarily left-handed, just
because he does everything with his left arm” (Interview 2014). In other words, scientific
discoveries as a result of narrow viewed research or findings in a control group – instead of
research that is specifically focused on people with an intersex condition and/or DSD – can
lead to wrong conclusions.
Another strategy in order to challenge medical practices can be to show people what different
kinds of bodies look like and to challenge the idea of a normal body. Unfortunately, changing
the way in which people view the ‘normal body’ is a huge task. It is one of the aims of
feminismto fight objectification and sexualization of the female body, against the beauty
industry and for just representation (for example see the 2011 documentary film Miss
Representation). Clinicians could explain that one’s body is normal and does not need change
and discuss if it is wise or not. However, it is still the patient’s choice (Van der Have,
Interview 2014).20 One of the obstacles in giving information, for example about ‘normal
bodies’, is that intersex conditions and/or DSDs are invisible. In the next sections I will
examine the way in which intersex/DSD activism tries to achieve better visibility and just
representation of people with an intersex condition and/or DSD.
Visibility and representation
One of the aspects of intersex/DSD activism is making the people with an intersex condition
and/or DSD more visible in society. The secrecy amongst these people is large and it is a
collective secrecy (Van der Have). As explained in the previous chapter, it used to be good
medical policy not to talk about intersex/DSD and therefore, did not have contact with others.
20
Also, one could question the results of providing information. There are still millions of unnecessary
cosmetic surgeries performed each year, even though there is much information accessible about
normal bodies and disadvantages and risks of cosmetic surgery.
37
This changed through developing views on sex differentiation and treatment and through the
rise of internet and accessible information. However, according to Van der Have, there are
still people in patient organizations who do not want to define their conditions with the terms
intersex or DSD because of shame and lack of knowledge about it: “unknown, unloved”
(Interview 2014).
This invisibility can have great influences. For example, Van der Have found an article that
states that PGD could be used for intersex/DSD, because “intersex does not contribute to
diversity”. When Van der Have told me this during the interview, I thought it was quite
strange and contradictory, because in my view intersex/DSD contributes to diversity. She
explained that in order to contribute, you have to be visible, because if one does not know
something exists, one does not have to feel guilty when doing things wrong (Interview 2014).
For example, when parents do not know of the existence of intersex conditions and/or DSDs,
they feel like surgery is a good option for their child, even though this can have severe
consequences.
The lack of visibility of people with an intersex condition and/or DSD is also a reason for the
fear of coming out with an intersex condition and/or DSD. This fear is mostly internalized –
“internalized interfobia” – according to the “Standpunten & Beleid” report of the NNID (67).
Therefore, people with an intersex condition and/or DSD choose often to not ‘come out’ and
tell people and just “conform to the dichotomy and no one will say something about it,
however, there you keep feeling afraid” (Van der Have, Interview 2014). Although this fear
generally does not immediately go away when people tell others about their condition, it can
feel very liberating for people with an intersex condition and/or DSD to see other people
coming out. A good example of this is the moment when Van der Have and two other women
decided to appear in a talk show (Vinger aan de Pols). Doctors then told them that the
youngest girl Nienke, who was 17 at the time, should not be recognizable, so maybe they had
to deform her voice and wear a shawl, because “you never know what is going to happen”.
Van der Have: “well, really nothing happens”. As a result of the show, many doctors have
stated that maybe they needed to think differently about their policies of secrecy and this
resulted in more openness from the doctor to the child and their parents.21 Also, the number of
members of patient organization AISNederland doubled after the talk show aired. Increased
21
However Van der Have knows stories of doctors who still do not want to tell old patient, because
they feel it is not necessary to tell them at their age.
38
visibility results not only in increased knowledge, and emancipation,22 it can also lead to
positive examples for other people with an intersex condition and/or DSD.
Therefore, visibility is crucial in intersex/DSD activism and one way of increasing visibility is
to manage representation. Both Van der Have and Van Heesch agree that there is a lack of
just representation of people with an intersex condition and/or DSD. Van Heesch has shown
that when one conducts a Google image search of ‘intersex’: mostly images of bodies or body
parts, specifically genitalia come up. In addition, Google uses the terms ‘Hermaphroditus’
(which showed several Greek mythology-images) and ‘Hermafrodite’ (which showed a Greek
statue, a picture of athlete Caster Semenya, and a picture of lady Gaga) as other suggestions.
This not only confirms that emancipation is still needed. Not being correctly represented, is
hurting people with an intersex condition and/or DSD and the ones active in the intersex/DSD
movement. It reinforces shame and taboos and it misinforms other people. Therefore, just
representation is crucial to intersex/DSD activism.
Representation happens on different levels. One important aspect of representation is having
organizations and spokespersons. According to Van Heesch, the NNID is the biggest
organization for people with an intersex condition and/or DSD in the Netherlands and Miriam
van der Have is running it all. Van der Have and the NNID have been able to achieve much,
for example the attention at the Dutch ministries, but I suggest the activism depends too much
on very few people and is therefore very vulnerable. Another form of representation concerns
the visibility of people with an intersex condition and/or DSD. Buikema makes a distinction
between two types of representation: the political representation – making someone or
something present i.e. make someone speak for a group - and the representation at a symbolic
level (72). The first type is, for example, the performance of people with intersex condition
and/or DSD in politics or media. The second – representation at a symbolic level – is more
concerned with the way in which these individuals are addressed, discussed or represented
and to avoid for example the stereotypical ways in which they used to be represented
(Buikema 72). Therefore, it is very important for intersex/DSD activism to acquire insight
into the stereotypes in order to work on more adequate forms and language of representation.
Also because, “when the ethics of representation are at stake, it is the image that has the final
22
Van der Have: “the emancipation of the quite group of people still increases when more people
come out for their condition”
39
say in the matter. Not the artist” (Buikema 79). That is to say, good intentions have to be
materialized in adequate representations.
Moreover, one of the goals of intersex/DSD activism is to increase the representation of
intersex/DSD in education and science. Van Heesch is personally doing part of this job by
writing her dissertation on the stories of people with an intersex condition and/or DSD and
she teaches at the University of Amsterdam about gender and sexuality. She also tried to
make students interested in intersex/DSD, but this was not very successful (Van Heesch,
Interview 2014). In order to help correct representation of people with an intersex condition
and/or DSD, the NNID is planning on making a documentary on intersex/DSD. They also
plan to organize a seminar on the Intersex Awareness Day this year in order to present a broad
image of intersex/DSD. Films, documentaries and seminars can be part of feminist practice,
for example to tell stories of people whose voices are not heard enough and discuss these
stories and exchange different viewpoints, experiences and knowledges. Buikema states that
the concept of representation “is taken to refer to the act of making present what is absent in
reality or in language and culture, that is, the symbolic order” (72). One of the ways in which
Van Heesch amongst others is working on this representation is by making present what is
absent: the narratives of people with an intersex condition and/or DSD.
Losing the narratives
Real stories of real people with an intersex condition and/or DSD are hard to find, therefore,
the dissertation of Van Heesch is very important (Van der Have, Interview 2014). Van der
Have and Van Heesch state that the narratives are disappearing. The stories become shorter
when people tell them more often: they start out with a very long story in which every detail
is important (Van der Have confirms this happens in patient organizations) and as they tell the
story more often, they leave out these details. This might be a good development, because it
can mean that people feel more comfortable in telling their stories. However, it is also quite
sad that with these narratives also the history disappears of what happened and what the
consequences of medical practice have been (Van der Have, Interview 2014). This lack of
narratives can even be used by medical practitioners. In the words of Van der Have, the
clinicians can say that they have changed their methods and have new operation techniques
and that therefore things do not go as wrong as they did in the past, even though there is still
an subject-object relation between doctor and patient in which the doctor has the power over
40
the child. Roen (2008) confirms this: “Focusing in on specific elements of surgery […]
rapidly means losing sight of the intersex subject”. Therefore, the work is Van Heesch is
important for intersex activism, because she gives people with an intersex condition and/or
DSD a voice: she tells stories that are otherwise unheard.
Telling stories that are not heard is an important part of feminism, for example the stories of
women in patriarchally societies. I think the same goes for people with an intersex condition
and/or DSD: when their voices are not heard, they are not emancipated and treated equal. And
when their stories are not listened to, or researched by scientists and writers, change will be
very hard to accomplish. Van Heesch contributes to improving the situation of people with an
intersex condition and/or DSD by “letting them tell their story, giving them a voice”
(Interview 2014). She looks for and finds the narratives that are otherwise lost. When I asked
her when her goal would be reached, she stated: “when there are no secrets anymore”. While
working on this topic, Van Heesch has come to the firm conviction that “there is nothing to
gain with a secret”. Her strategy on telling stories of people with an intersex condition and/or
DSD is therefore simple: leave nothing out, no secrets and do not reinforce the shame and
stigma for example by being afraid to speak about it. Van der Have agrees with Van Heesch
that having a secret is horrible. However, she nuances this strategy by stating: “We write it all
down, but there is a difference between secrecy and privacy: one must have the right to tell,
but not the obligation” (Interview 2014).
In addition to Van Heesch’s work, one of the strategies the NNID uses to stop the
disappearing narratives is to film these stories. Van Heesch told me another way of making
narratives more visible, in reference to Betsy Driver “Tell five”: everyone should tell five
other people about intersex/DSD. However, by telling stories, it is important to tell the right
stories and discussing the right things and therefore intersex/DSD activists have to make
choices. Van der Have states she will not appear on a show in which she would be made fun
of: “that is in no one’s interest”. However, things go wrong and one can be misinterpreted or
misquoted. This is a shame, because it adds to the confusion, so you can do two things: react
formally – and often not receive an answer – or just let it go (Van der Have). Although there
are difficulties with representation, the NNID has set up good contacts with journalists, so
mostly journalists know what to write and they have enough contacts with the Trangender
Network Netherland and COC Netherlands in order for them to refer tough questions to the
NNID (Van der Have, Interview 2014). However, I believe that the representation of people
with an intersex condition and/or DSD could benefit significantly from feminist sensibility,
41
especially with account to gender and sex as a fluid and social constructed concepts and
inclusivity.
Feminist sensibility in representation of people with an intersex condition and/or DSD could
be significant in order to adopt a narrative methodology, meaning that personal stories of
people with an intersex condition and/or DSD can be connected to the exploration of wider
social and political contexts, or example medical practice and questions of equality. 23 In
addition to telling these stories and writing about them, other strategies for intersex/DSD
activism can be used, for example art.24
There is not one right strategy for intersex/DSD activism. For example, in Switzerland there is
a group of people that protests at medical conferences with signs. Also, there are patient
organizations attending these medical conferences in order to discuss with practitioners. I feel
that these practices are not mutually exclusive and Van der Have agrees: “activism does not
always have to be on the barricades, it can also be done by writing scientific articles, talking
to people and give information” (Interview 2014). However, it can be difficult to increase
equality and strive for social change, without one community and consensus about the way in
which these goals should be achieved. For example: several people in the NNID’s member
council advocate for direct political action in order to fix problems such as PGD, while others
prefer discussion. The NNID and Van der Have are more in line with the latter: they prefer
discussion. However, they are also quite straightforward in their fight for the rights and
interests of people with an intersex condition and/or DSD: “if there is no discussion possible,
then we go meet politicians and then you can have a riot soon”. In the next chapter I will
conclude the thesis.
23
I feel the slogan of second wave feminism – “the personal is political” – can also be appropriate for
intersex/DSD activism.
24
See for example the work of “gender variant visual artist” Del LaGrace Volcano.
42
Conclusion
My research question was: can intersex/DSD activism in the Netherlands benefit from
feminist practice? In the pages above I have been working towards an answer to this question
by examining the topic of intersex/DSD, the debates around different issues that are at stake
for people with an intersex condition and/or DSD (such as medical practices), and showing
different perspectives on these issues. In order to understand their strategies and goals it is
important to understand the difficulties that intersex/DSD activism faces, such as not being
one community and lacking representation (Van der Have, Interview 2014). By analyzing
interviews with two Dutch intersex/DSD activists – both at an organizational and at an
academic level – I have mapped out the status of intersex/DSD activism in the Netherlands.
Both literature and interviews let to the observation that intersex/DSD activism in the
Netherlands is in a transition phase. It has established itself professionally since the
foundation of the NNID and their focus on political change. Intersex/DSD activists have
achieved much in the sense that even though there is not one ‘intersex community’, there is
now an umbrella organization which has opportunities to influence the political agenda. Even
though the intersex/DSD activism encounters many difficulties and consists of few
individuals with almost no funding, they continue their work with admirable effort and
dedication. It hopefully results in the acknowledgement that they are a group of people in
need of emancipation, equality and representation in Dutch society. The momentum is here
for political and therefore hopefully social change for people with an intersex condition and/or
DSD.
However, as the interviewees made clear, the goals that intersex/DSD activists have for the
future are much more inclusive than just the emancipation aspect, although that is both a very
important starting point and an obstacle. Intersex/DSD activists also focus on achieving more
visibility for people with an intersex condition and/or DSD and obtaining equality. In the third
chapter I have examined the variety of strategies intersex/DSD activists use in order to obtain
these goals. Organizations such as the NNID keep international contacts in order to obtain
national recognition, to share information (for example with respect to the PGD issues), and
to influence the international policies on intersex/DSD. They also obtain and share
information in the Netherlands via websites and social media, but also through other media,
such as journalism in newspapers and magazines, on television and radio. For the NNID,
these are the media to obtain more visibility and work towards more and better representation.
43
Another strategy used by Dutch intersex/DSD activists to preserve personal narratives of
people with an intersex condition and/or DSD, is by giving them a place in academia and
making these stories last (Van Heesch, Interview 2014). By mapping out these strategies I
have shown intersex/DSD activism takes place in connections on different levels in different
disciplines: in politics, journalism, the medical field and academia.
I claim that in order to achieve even more in terms of these goals for the future – such as
visibility, recognition, emancipation and equality – intersex/DSD activism could benefit from
feminist sensibility. Feminism is inclusive to minorities: feminism can give people a voice to
people who are not represented well in society, such as women, people of color, and
LGBT(IQ) people. Feminism can examine and problematize and question the power relations
that are at stake between for example people with a ‘normal’ body and people with ‘atypical’
bodies and can specifically challenge the “knowledge/power” relation between clinicians and
‘patients’. Also, feminism views and challenges the ‘heteronormativity’ of our society and
feminist views on gender and sex as “performative” (Butler) and fluid are supportive of ‘other
bodies’. Practices shaped by feminist sensibilities can build on these views by supporting
actions that strive for social change.
Both researchers and policy makers acknowledge the fact that there are different ways of
taking action. One is through informing politicians and clinicians and trying to influence
policymaking. Another is through public demonstrations. Also, art can play a role in
supporting visibility and representation. Similarly, visual media, such as documentaries,
movies, etc. can play a role in representing and showing the narratives of people with an
intersex condition and/or DSD and in deterring the disappearing of these narratives. Also,
feminist sensibility in the practices of sharing knowledge and debating is very important. For
example film screenings or seminars with different speakers, combined with questionnaires
and discussions, can be a very fruitful and inclusive way of challenging stereotype views and
assumptions.
As Van der Have explained and as also mentioned in Roen (2009), other ideas for further
support of the interests of people with an intersex condition and/or DSD are obtaining more
visibility by big campaigns that are shaped by feminist sensibility, or cultural expressions like
theater, art, literature and film. I also think it would be very helpful to try to implement
feminist sensitive information about the topic of intersex/DSD in the curriculum of schools
and also for universities (for example in disciplines of gender studies, but also in sociology
44
and medicine disciplines and practices25). Of course this information should also be available
in clinics for expecting parents. In my opinion, intersex/DSD activism can learn from the way
in which the LGBT(IQ) movement has tried to gain more visibility.
When reflecting on this thesis, I feel it is important to stress again that this thesis is written at
a transition time for intersex/DSD activism. It would be interesting for further research to see
what would happen if the government acknowledges that people with an intersex condition
and/or DSD have an emancipation aspect. Not obtaining this acknowledgment could mean a
huge obstacle for and maybe the end of intersex/DSD activism in the Netherlands as it is now.
However, obtaining this acknowledgement can bring about more funding for organizations
advocating for rights and interests of people with an intersex condition and/ or DSD and
possibilities for political and social change.
Further research on this topic could also engage with the medical side of the topic, for
example medical research on people with an intersex condition and/or DSD, questioning the
ethics of PGD or focusing on the way in which medical practitioners can influence
intersex/DSD activism. It would also be interesting to examine the ways in which
intersex/DSD activism in the Netherlands is perceived by people with an intersex condition
and/or DSD and how it has influenced their lives.
25
Especially to smoothen the transition from pediatric to adult clinicians.
45
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