Introducing sex diversity2021-10-25T10:44:10+00:00
Schoolbord met daarop geschreven de woorden 'introductie seksediversiteit' en met op de voorgrond een appel, een wisser, een schooltas een aantal schriften of boeken en een bakje met een aantal potloden.

Image: iStockPhoto aelitta

Introducing sex diversity

What is intersex? What does DSD mean? And what does sex diversity mean? We’ll discuss it all on this page.

Sex diversity, gender diversity and sexual diversity

Legislation mentions concepts like man, woman, father, mother, brother, sister and so on countless times. But nowhere in the law are the concepts of man and woman actually defined. Apparently, this was considered unnecessary. For a long time, legislators pretended that only male and female bodies existed (sex), that people only identified as men or women (gender), and that people only entered into relationships with the opposite sex (sexual orientation). Of course, intersex people, trans people, lesbian, gay and bi+ people have always existed – but due to strict societal norms, almost everyone found it very uncomfortable to talk about them. Sex, gender and sexuality are different subjects, but they share an important question: what do we mean by man and woman? In addition, everyone has to deal with all three topics and can therefore ask themselves three questions:

  1. What is my sex?
  2. What is my gender?
  3. What is my sexual orientation?

Many people will be able to give an answer quickly, for others it is more complicated. It is now widely accepted that it is possible to add nuance to those answers. So not just man/woman, male/female, straight/gay. Each of the three answers lies somewhere on a broad spectrum and can also vary according to one’ s feelings or social circumstances.1See the intersex page for an explanation of how sex diversity can depend on lived experience, social consequences, and the norms applied by society. This leads to so much variation that we speak of sex diversity, gender diversity, and sexual diversity.

Sex diversity explains that the boxes ‘man’ and ‘woman’ are limiting concepts: based on sex characteristics, people cannot exclusively be divided into men and women. Everybody is different and unique. Sex is not a dichotomy, but a spectrum with an infinite number of equivalent variations. We call this sex diversity. Everyone is part of the concept of sex diversity because every human being is somewhere on this spectrum.

Gender diversity implies that people can experience gender as much more than just ‘man’ or ‘woman’. A short but not conclusive list that shows the diversity in how people can experience their gender: non-binary, genderqueer, queer, trans, genderfluid, pangender, polygender, agender, genderless, genderfree. Of course there are and will be many more terms people use to express how they experience their gender. All options are important to recognize and completely valid, because gender is far from ‘just’ female or male. Of course, you never have to make a clear and ultimate decision of where you stand on the gender diversity spectrum.

Sexual diversity show the diversity in which people express how they experience their sexual and/or romantic relationships. This can be anything from lesbian, bisexual, gay, asexual, pansexual, polyamorous, omnisexual, etc. This is an incomplete overview of how people can express their sexual orientation. Of course, you never have to make a clear and ultimate decision of where you stand on the sexual diversity spectrum.

Introduction to sex diversity

If you want a quick answer on what sex diversity is, the best place to start is with the frequently asked questions below. The answers can be understood independently of each other – so you don’t have to start with the first topic. [footnote_exclude]

What is diversity?2021-10-08T11:16:55+00:00

What is diversity?

Diversity means recognizing, accepting, respecting, and valuing differences among people, for example, on the basis of age, health, race, ethnicity, culture, gender, gender identity, gender expression, sexual orientation, marital status, education, work experience, socioeconomic status, and religious beliefs, political beliefs, or other ideologies. Diversity also means recognizing that each person is unique and that the differences between individuals are acknowledged, accepted, respected, and valued.

Diversity occurs when groups and individuals live and work together without prejudice in an environment that is safe for all. This means that diversity is more than just tolerating differences.

What is sex diversity?2021-10-08T11:14:44+00:00

What is sex diversity?

In short, sex diversity is the premise that biological sex is a spectrum with infinite equivalent variations, including male and female. It is an inclusive designation; meaning that everyone is part of the concept of sex diversity.

But diversity also requires the recognition that some groups have privileges and that other groups are disadvantaged. In the case of gender diversity, privileges have arisen because the cultural view of gender does not correspond to reality. The cultural view generally assumes, for example under the influence of religion, that there are only two genders: male and female. In the prevailing cultural view, people who are born with a body that does not conform to the cultural view of man and woman are1People who are born with a body that does not fit within the social constructs of male and female are usually referred to by terms such as intersex people, DSD patients, people with sex variance, etc. often considered inferior. An attempt is made by society to adapt these individuals to fit the prevailing cultural view with medical, psychological, and social interventions. Forced conformity to the prevailing cultural view leads to serious human rights violations that are rarely investigated or prosecuted.

What is intersex?2021-10-19T10:11:04+00:00

What is intersex?

There are many definitions in circulation. The definition that thisisintersex.org uses gives everyone enough room to give their own interpretation of the term intersex

The term intersex refers to the lived experience of people who are born with a body that does not fit within the normative social construct of male or female.

Portret van meisje met sproeten en rood haar. Het meisje draagt een strooien hoed.

Do you have red hair, or are you a redhead? What you call yourself is often a matter of personal preference.

Intersex is not something you ‘are’, but something you ‘have’, just like you might “have” blonde or red hair. You are not red or blonde hair. So you have an intersex body, just like you have a big or a small nose. Although most intersex people feel that their intersex status is not an identity, they often still say ‘I am intersex’. A few do so because their experiences have contributed to their identity. Others do it because they want society to know that they share experiences with other intersex people. And still others do it because they feel that intersex is not a medical problem, but a social problem. An intersex individual is not in pain, will not die from their ‘condition’, nor is it curable. Hence, these intersex activists are strongly against the word ‘disorders’ in ‘disorders of sex development’.

Intersex is a variation on the norms that are (incorrectly) applied to the ‘diagnosis’ of male sex or female sex. The standard for ‘male’ is XY chromosomes, penis, testes, testosterone and a certain physique, while the standard for ‘female’ is based on XX chromosomes, vagina, ovaries and a uterus, estrogen and a different physique. Yet some girls are born with XY chromosomes and some boys with XX chromosomes. Or boys with a vagina and girls with a clitoris so large that it might as well be called a small penis. In the latter situations, doctors and parents still often think that surgical intervention is necessary. Yet in most cases there is no medical emergency and surgery is performed only for cosmetic reasons. At that point, intersex is medicalized.

What is a DSD?2021-10-08T11:29:46+00:00

What is a DSD?

First of all, intersex and DSD are not the same thing, but they do involve exactly the same group of people. The acronym DSD, which stands for disorders of sex development, was coined in 2006 by health professionals who found the word intersex stigmatizing and inaccurate. So in 2006, intersex and DSD meant exactly the same thing. But shortly after the publication introducing DSD, it became apparent that the perceived value of DSD was not identical to that of the word intersex. Both patient groups and intersex activists stumbled over the word disorders which has a strong negative connotation. It was seen as extra stigmatizing and medicalizing. Nowadays, the alternative differences of sex development is often used. This name is not ideal either, because it suggests that there is another group that sees itself as the norm. In sociology this is called ‘othering‘.

The imposed name Disorders of Sex Development is seen by many intersex individuals as an example of medicalization. Physicians define DSD as

…congenital disorders affecting the reproductive system, in which development of chromosomal, gonadal, or anatomical sex is atypical.

In practice, a large number of diagnoses fall under the heading of DSD, including Androgen Insensitivity Syndrome, Klinefelter Syndrome, micropenis, Mayer-Rokitansky-Küster Syndrome, and Turner Syndrome (see also the Wikipedia page on DSD).

Are intersex and DSD the same?2021-10-08T11:33:31+00:00

Are intersex and DSD the same?

Intersex is not the same as the term DSD used by health professionals. That abbreviation stands for disorders of sex development or differences of sex development. They do concern the same groups, but whereas intersex is about human rights, DSD is about physical problems and medical treatment. The overview below outlines how intersex and DSD differ:

  • The intersex community…
  • The DSD community…
  • …works from the social sciences.
  • …works from medicine.
  • …is based on our lived experience.
  • …is based on our bodies.
  • …sees biological sex as a spectrum.
  • …sees biological sex as a dichotomy.
  • …speaks of human rights.
  • …speaks of the best surgical technology.
  • …wants equality and emancipation.
  • … discriminates by treating trans and intersex children differently.
  • … accepts physical diversity.
  • … denies that diversity.
  • …works towards inclusion.
  • …works on integration.
  • …requires psycho-social support because society is not sufficiently accepting of intersex.
  • …offers psychotherapy because the high number of suicide attempts is worrisome.
  • … demands bodily integrity.
  • …offers physical ‘normalization’.
  • …is satisfied with a good ‘quality of life’.
  • …is satisfied when we are turned into ‘normal’ people.
  • …wants to change society.
  • …wants to change patients.
  • …works in society.
  • …works in hospitals and patient groups.
  • In one word: demedicalization. 
  • In one word: medicalization.
  • But the main, most important difference is that the intersex community is led by intersex people and the DSD community is led by health professionals.
Which name is better, intersex or DSD?2021-10-19T10:13:26+00:00

Which name is better, intersex or DSD?

That’s not how it works. When the word ‘better’ is used, it means something else is ‘worse’ and that doesn’t apply here. Opinions can be diametrically opposed, but a philosopher will say that both views can still be ‘true’. Ancient Greek philosopher Pyrrho pointed out that two views can coexist because the opposite can be argued against each view with equal reasonableness. According to him, no one view of a subject can be accepted as true without doing injustice to the adherents of another view. He therefore concluded that one should not pass judgment on another’s view. This applies, by the way, not only to the choice of words, but also to the definitions used.

Intersex and DSD are all about the definition of both words. For example, parents of a child with Congenital Adrenal Hyperplasia (CAH) may say that their child has no masculinization of the genitals (anymore) and that CAH is therefore not an intersex variation or a DSD. That is a different truth than that of the adult woman who does use the word intersex because she perceives the influence of increased testosterone production in the adrenal gland in her body. Everyone is entitled to their own definition and therefore their truth.

Too complicated? Then go with the shorter version: respect each other’s views. Someone who says they have an intersex variation has an intersex variation. Someone who says he/she has a DSD, has a DSD. Someone who says he/she has neither, has neither. Period.

Does thisisintersex.org use the acronym DSD?2021-10-19T10:21:13+00:00

Does thisisintersex.org use the acronym DSD?

Artsen hebben voor het acroniem DSD gekozen omdat de drie letters van alles kunnen betekenen. Dat zou minder stigmatiserend zijn dan het woord intersekse.

Doctors chose the acronym DSD because the three letters could mean anything. That supposedly makes it less stigmatizing that the word intersex.

NNID Foundation, the publisher of this website, is a non-governmental organization (NGO) primarily concerned with human rights. In the political and scientific environment where NNID is most active, the word intersex is used almost exclusively. So it’s the word we use. But we respect that other people may prefer to use the acronym DSD or the name of a diagnosis.

Where appropriate, this website uses the designation DSD (differences of sex development) – everyone is free to choose to use intersex or DSD, or to use both, or to use something else entirely, like forms of sex diversity. Good information and political attention are more important for the advocacy and equal rights of sex diverse people than the name that is used.

Summary: This website is for anyone who has experienced that social acceptance of people born with bodies that do not conform to the nomative social construct of male and female is still low.  The name that is used is not so important in the grand scheme of things.

How many intersex people are out there?2021-10-08T11:57:23+00:00

How many intersex people are out there?

The answer to that question depends on the definition you use, but also on which research population you use. NNID uses a percentage that comes from Danish research published in 2019, based on a large random sample, that assumes the experience of having a body that does not fit within the normative social construct of male and female.  The research shows that probably about 8.24 million Europeans meet NNIDs definition of intersex.

The United States (2000)

The Intersex Society of North America (ISNA) website stated long ago that in 0.15% to 0.20% of children, the genitalia give cause to seek the assistance of a medical specialist in sex determination (ISNA zd2). Fausto-Sterling, in her book Sexing the Body (Fausto-Sterling 2000), cites a rate of 1.728% in which she has included most of the diagnoses that today fall under the heading of DSD.1This rate is also cited in the article How sexually dismorphic are we by Melanie Blackless et. all. (Blackless 2000) In a response to that book, Leonard Sax assumed people whose chromosomes do not match their bodies (e.g., women with XY chromosomes) or who cannot be unambiguously classified as male or female and thus arrived at a percentage of 0.018% (Sax 2002).

Thus, the figures depend on the definitions used. For example, it is clear that Sax does not count a number of common chromosomal variations: 1 in 500 men has 47,XXY chromosomes and 1 in 2500-4000 girls has 45,X or 46,XX/46,XY chromosomes. Mayer-Rokitansky-Küster syndrome (1 in 5000 women) and micropenis (1 in 200 men) are also counted among DSDs.

The Netherlands (2014)

A percentage NNID has used for a long time is 0.5 percent. This percentage comes from the Dutch exploratory study Living with intersex/dsd published by the Social and Cultural Planning Office in 2014(Van Lisdonk 2014a). This looked at the numbers reported in medical-scientific publications for a limited number of diagnoses. It gives an impression of how many people received a specific diagnosis from doctors. It was clear from the outset that two important groups are missing from that percentage: a) those who are intersex but have never been seen by a doctor, and b) those who are intersex but have received a different diagnosis.

Denmark (2019)

In 2019, 62,675 people in Denmark were asked “Have you noticed any variations in your genitals, chromosomes, or hormones as a child, adolescent, or adult that make them not match the characteristics typical of men or women?” 1.3 percent of men and 0.9 percent of women indicated their biological sex characteristics did not fit within common definitions of male or female (Frisch 2019) 2In the same survey, 1.7% percent of this group (about 0.2% of the population) indicated that they identify themselves as ‘interkønnede’. This word is used in Northern languages in the sense of intersex, but also has the meaning of hermaphroditism and, literally, intergender. This is because both sex and gender are translated with køn in Danish. The designation interkønnede therefore has the same negative connotation as hermaphroditism or intersexuality.. This means that 1.1 percent of people fall under the definition of intersex. 3In the same survey, 6 percent of participants said they were dissatisfied with how their genitals looked. This means that approximately 8.24 million Europeans meet NNIDs definition of intersex.

Grafiek met data van Frisch et al. 2019 waarin de data per geslacht en per leeftijdsgroep is uitgesplitst.

Percentages in different age groups of individuals with variations in genitalia, chromosomes, or hormones such that the sex characteristics do not match those typically reported for men or women. Young people up to 34 years of age are more likely to report a variation than older people. It is unknown what causes this. (Data: Frisch et al. 2019)

 

 

Where are all these people?2021-10-08T12:00:02+00:00

Where are all these people?

Despite the fact that substantial numbers emerge with each definition, intersex people are hardly visible in society. Scientists who do research into intersex variations have great difficulty in getting in touch with intersex people. Usually no more than a few dozen people participate in such research and they often have different diagnoses, making the research results difficult to interpret.

The reason why so few people can be found has to do with the taboo that still rests on the subject. In their youth they were often told not to talk about it to anyone, so most people make themselves ‘invisible’ once they become adults. That taboo is still there. For example, a mother of an intersex child sighed during a meeting of fellow peers: ‘if only my child had ADHD or Asperger’s, I would be able to talk about it with other mothers in the schoolyard’.

We are not only invisible to doctors and researchers. We are also often untraceable to other intersex people – the patient & fellow peer organizations have far fewer members than the number of diagnoses would suggest. People who do become members of a fellow peer organization usually do not come out with their story, despite the fact that quite a few European societies are reasonably tolerant towards intersex.

Can the true sex be determined at birth?2021-10-08T12:01:55+00:00

Can true sex be determined at birth?

No, no one can determine “true” sex at birth.  Intersex children are born with a body that does not fit into society’s image of male or female. This means that at birth a gender is assumed and at the same time it is assumed that the child will develop a corresponding gender identity. In about 5% of children, that assumption turns out to be incorrect. It is impossible to predict who will be among that five percent. So no, the “true” sex of an intersex child cannot be predicted.

However, it does appear that the assumptions about gender and the gender identity that has yet to be developed are more accurate in some forms of sex diversity than in others. For example, most people with Klinefelter’s Syndrome identify as male, while people with Turner’s Syndrome or Complete Androgen Insensitivity Syndrome tend to identify as female.

Because it is impossible to determine in whom the assumed sex corresponds to the experienced sex, it is very unwise to put children through medical treatments to “confirm” the assumed sex shortly after birth. According to the United Nations, the Council of Europe, the Parliamentary Assembly of the Council of Europe, and the European Parliament, such treatments are a serious violation of the rights of the child and should be prosecuted. In some countries, the government believes that parents should be allowed to decide with doctors whether such treatment should take place.

 

Unnecessary surgeries are no longer performed, right?2021-10-08T12:02:57+00:00

Unnecessary surgeries are no longer performed, right?

More and more health professionals believe that surgeries on intersex children should be delayed until the child can decide for him- or herself. Unfortunately, this does not apply to all forms of sex diversity. In babies with CAIS, the testes are not removed these days, but in children with CAH, they usually don’t wait until the child can decide for himself. It is believed that children with CAH “benefit” from early non-autonomous, uninformed surgical treatment. Doctors who say that intersex children are no longer operated on usually redefine intersex as ‘children whose sex we have been totally unable to determine’. In this way, they can operate on children whose sex they say could be determined.

Based on those surgeries, many countries have received strong recommendations from the UN Committee for the Convention Against Torture to end these medical treatments. So yes, unnecessary surgeries without the consent of the child itself are still performed.

 

Male, female or in between?2021-10-08T12:09:26+00:00

Male, female or in between?

Most intersex people identify as either male or female. But just as the rest of society is not made up of Barbies and Kens, intersex people are not all alike. There are tough guys, beautiful women and everything in between. Nothing out of the ordinary, in other words. But have you ever wondered why you are so sure that you are either male or female (or not sure – that’s also possible)? Pyrrho of Elis was mentioned earlier, the man who argued that no knowledge is certain. Since you only know your own vision, a little philosophical doubt would not hurt anyone.

Presentation of the first Dutch passport with an X as the sex designation for an adult. Image: Miriam van der Have

NNID is committed to abolishing sex registration by governments, and is focusing on the government of the Netherlands. The obligation to state in the Basic Registration of Persons (BRP) whether someone is male or female makes parents feel extra pressure to subject a child to unnecessary medical treatments that can easily be postponed until the child is old enough to decide for himself. Already, it is possible for intersex children to be listed in the BRP as “gender was not able to be determined” and a number of intersex children now have an X in their passports. In 2018, the Roermond District Court ruled that adult intersex people may have their gender registration changed to ‘gender is not able to be determined’. While NNID welcomes these developments, we believe that all people should have the option to have their sex registration cancelled in the BRP. Moreover, this development should then be a step towards the complete abolition of gender registration by the government.

Is intersex a third sex or gender?2021-10-08T12:12:32+00:00

Is intersex a third sex or gender?

No. Most intersex people present and identify in society as male or female. There are some intersex people who consider intersex to be a third gender and present themselves as such to others. International intersex organizations have spoken out against the recognition of intersex as a third gender in the Malta Declaration. They believe that there should be less pigeonholing instead of more. Some intersex people have an X in their birth certificate and passport as their sex designation. The X stands for ‘sex could not be determined’ and thus is not a third sex.

Developing a gender identity other than the one assumed at birth can be difficult for intersex people. This is especially true for people who underwent ‘normalizing’ surgery shortly after birth without autonomous and informed consent. Due to social pressures, they are more likely to present as male or female rather than non-binary or intersex.

Is it like being trans?2021-10-08T12:17:55+00:00

Is it like being trans?

Intersex is not the same as trans/transgender. Being trans is about gender identity and gender expression: how you see yourself and how you present yourself to others. When someone is trans, their perceived social gender is not consistent with their biological sex.

When someone is intersex, their biological sex is not consistent with what doctors perceive as a standard male or female body. Most intersex individuals identify as male or female, and usually their perceived social gender corresponds to the sex assigned at birth. The difference is perhaps best explained with a comparison that is so brief as to be a little off-putting to reality:

Some trans people seek the help of a doctor to adjust their bodies to their views, while intersex people seek help to get rid of the doctor who has adjusted their bodies to his views.

Many intersex people get along well with doctors these days, thankfully, and by no means is every trans person looking for a doctor. But it does emphasize the essence of the difference. While surgical intervention for intersex variations is no longer a given for a small group of modern physicians, many of our stories are about  unpleasant contact with health professionals.

Not intersexual?2021-10-08T12:26:22+00:00

Not intersexual?

No. Instead, you can talk about an intersex person; with a space indicating that intersex is an attributive adjective – just like blonde hair, Utrecht canals, and long legs.1In the sentence “I am intersex,” intersex is a predicative adjective.

The word intersex is not a noun. So calling someone an intersex is incorrect. Is someone who has broken their leg a legbreaker? Is someone who has cancer a cancer-haver? In the medical world, it is considered very inappropriate to call someone after a diagnosis. Moreover, intersex is not a sexuality. It is also not a sexual orientation, nor is it a gender identity. Of course, that is not to say that intersex people do not have a sexual orientation and gender identity – we are no different from other people in that. Maybe among intersex people you’ll encounter a bit more gay, lesbian and bi people or more questions about what being a man or a woman means to you. But that’s nothing to be ashamed of, right?

Not a (pseudo)hermaphrodite?2021-10-08T12:33:37+00:00

Not a (pseudo)hermaphrodite?

De slapende Hermaphroditus is een beeld in het Louvre. In het echt worden geen mensen geboren met volledige mannelijke en vrouwelijke voortplantingsorganen omdat deze organen tijdens de zwangerschap ontstaan uit hetzelfde weefsel. Dat weefsel kan zich in mannelijke richting ontwikkelen of in vrouwelijke richting, maar niet in allebei.

The sleeping Hermaphroditus is a statue in the Louvre. In real life, people are not born with complete male and female reproductive organs because these organs develop during pregnancy from the same tissue. That tissue can develop in a male direction or in a female direction, but not both.

Pseudohermaphroditism is the obsolete name that used to be used for certain forms of gender diversity. Nowadays, the term is generally considered offensive because it suggests someone who falsely (pseudo is Greek for “false”) advertises themselves as a hermaphrodite. Hermaphroditism is the biological phenomenon in which an animal can have both the male role (fertilize) and the female role (give birth) in reproduction. Snails and earthworms are hermaphroditic animals. Intersex individuals, with one very rare exception, have either testicular tissue or ovarian tissue or no gonadal tissue at all. Even with that exception, it is not possible to bear a child AND to conceive a child. Many intersex people even have reduced fertility or are infertile. So, no, we are not hermaphrodites.

Is [celebrity] intersex?2021-10-08T11:12:34+00:00

Is [celebrity] intersex?

The internet is full of claims about celebrities being intersex. Don’t expect confirmation or denial of that type of gossip here. It should be possible to talk about being intersex without being afraid of the consequences, but people should never be forced to come out.

Separator diversiteit

Image: Ksenia Bravo

Go to Top