Drawing with two people sitting on a not-equal sign.

Image: iStockPhoto Nuthawut Somsuk

Intersex is not DSD

Intersex is not the same as DSD (disorders/differences of sex development), yet both terms refer to the same group of people. Sometimes DSD and intersex do speak on the same issues. However, DSD and intersex have a substantially different approach. Intersex and DSD can be seen as the different sides of the same coin.

The differences between intersex and DSD

If you ask one side of a coin to describe the other, they would only be able to describe themselves – they do not know enough about the other to be able to describe it. This would result in both sides not being satisfied with their given description. The same goes for DSD and intersex. The words may refer to the same group of people, but the meaning is different. Both DSD and intersex speak of ‘rights’ and ‘good care’; the words are the same, but their meaning is different. In order to bring DSD and intersex closer together, the differences must first be put into words.

A lot has changed since 2006

Since the introduction of the acronym DSD in 2006, much has changed for both intersex and DSD. Yet in 2006, DSD was only meant to be a new name for intersex.1It was evident that both terms meant the same from the titles of the publications in which the acronym DSD was introduced: Consensus statement on management of intersex disorders (Hughes 2006, Lee 2006). Intersex had become a stigmatizing term according to some and it needed to be replaced by a new term that was not (yet) so stigmatizing. 2Ten years after the introduction of the acronym DSD, the term was now also experienced as stigmatizing. This is, of course, not strange: it is people who stigmatize, not words – without social change any name for a stigmatized minority will eventually be experienced as stigmatizing. This caused a great deal of protest and prompted the proponents of the term to go in a new direction, away from the medical approach that had been used for decades and also became the starting point for DSD. However, it concerns almost3Health professionals do not count polycystic ovary syndrome (PCOS) as a DSD while these women are increasingly visible within the intersex community. In PCOS, women have naturally high levels of testosterone. This leads to an increase in body hair. Thus, PCOS further substantiates the fact that biological sex is a diverse spectrum the same group of people. Broadly speaking, the following differences have occurred over time4These differences cannot be attributed to the development of DSD alone or intersex alone; both sides have developed strongly (and in different directions) since 2006. , noting that reality is not black and white; more and more health professionals are paying attention to the social aspects and understand why the United Nations has given recommendations to the Netherlands5At the end of 2019, the Netherlands received recommendations from three treaty committees: for the UN Women Convention, for the UN Convention against Torture, and for the UN Covenant on Economic, Social and Cultural Rights. In 2017, recommendations were also received in the Universal Periodic Review. Updated information can be found on the United Nations Recommendations page. to improve care for intersex people.

(Use the buttons between the columns of the table below to read more about the differences).

Separator: start positie
Separator: start positie

1. Scientific field

  • The intersex community…
  • The DSD community…
  • works from the perspective of the social sciences
  • works from the perspective of medicine

Since the acronym DSD (Disorders of Sex Development) was introduced in 2006 by a group of mainly American and European health professionals, a big difference between DSD and intersex has emerged. This is mainly because DSD experts mainly work in health care/medicine, while intersex experts are mainly social scientists, lawyers, and ethicists. Although DSD and intersex are not the same, scientists do talk about the same group of people.

The acronym DSD (Disorders of Sex Development) was introduced in 2005 by a group of 48 health professionals 6Of these healthcare professionals, 25 were based in the United states, 19 were based in Europe, two were based in Australia, one was based in Canada and one in Japan. and two intersex people7Cheryl Chase, the name Bo Laurent used at the time, and Barbara Thomas were invited as representatives of the intersex community. ISNA, an organization founded by chase, was dissolved soon after the gathering in Chicago. Chase then founded the Accord Alliance. Many intersex people protested against both the acronym DSD and the medicalizing tone of the Accord Alliance. Neither Chase nor Thomas ever truly recovered from this controversy, and they both lost their important role in the intersex community. as a replacement for the word intersex. Two reasons were given for this:

  • “Advances in identification of molecular genetic causes of abnormal sex with heightened awareness of ethical issues and patient advocacy concerns necessitate a re-examination of nomenclature.”
  • “Terms such as intersex, pseudohermaphroditism, hermaphroditism, sex reversal, and gender based diagnostic labels are particularly controversial. These terms are perceived as potentially pejorative by patients, and can be confusing to practitioners and parents alike.”

Simultaneously with the introduction of the acronym DSD, a classification of DSDs and a concise treatment protocol were published under the title ”Consensus statement on management of intersex disorders” in both American Pediatrics and the English Archives of disease in childhood. Both articles contain a very short, identical paragraph on ‘Cultural and social factors’, but other than that, the Chicago Consensus Statement, as the text is also known, only deals with diagnosis and treatment. Both the role of support groups and the legal issues are kept out of the actual consensus statement; they are included in appendices.

  • Name
  • Based in…
  • John Achermann
  • London, United Kingdom
  • Faisal Ahmed
  • Glasgow, United Kingdom
  • Laurence Baskin
  • San Francisco, CA, USA
  • Sheri Berenbaum
  • University Park, PA, USA
  • Sylvano Bertelloni
  • Pisa, Italy
  • John Brock
  • Nashville, TN, USA
  • Polly Carmichael
  • London, United Kingdom
  • Cheryl Chase
  • Rohnert Park, CA, USA
  • Peggy Cohen-Kettenis
  • Amsterdam, the Netherlands
  • Felix Conte
  • San Francisco, CA, USA
  • Kenneth Copeland
  • Oklahoma City, OK, USA
  • Patricia Donohoue
  • Iowa City, IA, USA
  • Chris Driver
  • Aberdeen, United Kingdom
  • Stenvert Drop
  • Rotterdam, the Netherlands
  • Erica Eugster
  • Indianapolis, IN, USA
  • Kenji Fujieda
  • Asahikawa, Japan
  • Jay Giedd
  • Bethesda, MD, USA
  • Richard Green
  • London, United Kingdom
  • Melvin Grumbach
  • San Francisco, CA, USA
  • Vincent Harley
  • Victoria, Australia
  • Melissa Hines
  • London, United Kingdom
  • Olaf Hiort
  • Lübeck, Germany
  • Christopher Houk
  • Hershey, PA, USA
  • Ieuan Hughes
  • Cambridge, United Kingdom
  • Peter Lee
  • Hershey, PA, USA
  • Leendert Looijenga
  • Rotterdam, the Netherlands
  • Bernadice Mendoca
  • Sao Paulo, Brazil
  • Heino Meyer-Bahlburg
  • New York, NY, USA
  • Claude Migeon
  • Baltimore, MD, USA
  • Yves Morel
  • Lyon, France
  • Pierre Mouriquand
  • Lyon, France
  • Anna Nordenström
  • Stockholm, Sweden
  • Phillip Ransley
  • London, United Kingdom
  • Robert Rapaport
  • New York, NY, USA
  • William Reiner
  • Oklahoma City, OK, USA
  • Hertha Richter-Appelt
  • Hamburg, Germany
  • Richard Rink
  • Indianapolis, IN, USA
  • Emilie Rissman
  • Charlottesville, VA, USA
  • Paul Saenger
  • New York, NY, USA
  • David Sandberg
  • Buffalo, NY, USA
  • Justine Schober
  • Erie, PA, USA
  • Norman Spack
  • Boston, MA, USA
  • Barbara Thomas
  • Rottenburg am Necker, Germany
  • Ute Thyen
  • Lübeck, Germany
  • Eric Vilain
  • Los Angeles, CA, USA
  • Garry Warne
  • Melbourne, Australia
  • Jean Wilson
  • Dallas, TX, USA
  • Amy Wisniewski
  • Des Moines, IA, USA
  • Christopher Woodhouse
  • London, United Kingdom
  • Kenneth Zucker
  • Toronto, Ontario, Canada
  • Participants in the international consensus conference on intersex

When health professionals announced in 2006 that the term intersex would no longer be used, a split occurred between the medical aspects and the social aspects of intersex variations: health professionals started to use DSD, while social scientists, ethicists, and lawyers continued to use the term intersex. Although the terms still had the same meaning at that time,8This is clearly visible in the title of both publications in which the results of the Chicago Consensus Meeting, including the acronym DSD, were announced in the US and in Europe: Consensus statement on management of intersex disorders. they later grew apart.

In 2013, 30 intersex organisations from all over the world came together in Malta to formulate their demands. The result is the still relevant Final Declaration of the Third International Intersex Forum, better known as the Declaration of Malta. This declaration calls for the demedicalization/depathologization of intersex, but especially for numerous social changes.

The division between DSD and intersex gained momentum when intersex rights became an issue at the United Nations. Jurists and ethicists concluded that parents’ right to make decisions was not absolute. An important boundary drawn by lawyers and ethicists is that decisions that can be postponed without adverse consequences until a child is old enough to decide for himself, need to be postponed. This position is mainly based on the right to self-determination and the right to physical integrity. But other rights also play a role, such as the right to a family life.

There are now dozens of UN reports and final conclusions from UN treaty committees calling on countries to respect the human rights of intersex people. In the Parliamentary Assembly of the Council of Europe and the European Parliament, motions have been adopted that broadly follow the demands of the Malta Declaration.

These developments are closely followed by social scientists. Their publications describe the process, while their analyses motivate intersex people to continue on their chosen path.

Auteurs van de Verklaring van Malta

Some of the authors of the Malta Declaration in 2013. Due to the risk of social exclusion or even persecution in their own countries, some of the authors are not pictured.

Back to overview
Separator: start positie

2. Experience or body?

  • The intersex community…
  • The DSD community…
  • is based on the lived experience
  • is based on the physical body

If there is one thing that DSD experts and intersex experts do agree on, it is that you are born with it. An intersex variation or a DSD it is not something you choose (like the color of your clothes) or that you develop later in life (like a gender identity). It may be, however, that these inborn characteristics only become visible or start to play a role later in life. The big difference between both groups of experts is that DSD experts are mainly interested in the body (diagnosis, health problems, good care) while intersex experts are mainly interested in how intersex people experience life being intersex. In sociology, this is called ‘the lived experience’.

For both the DSD community and the intersex community, the right diagnosis is important. After all, there are situations in which that diagnosis requires immediate medical intervention. But what else does that diagnosis mean? From the protocols that health professionals have drawn up, it appears that a healthy body is the highest goal. For this, a diagnosis is sometimes very important. But for a large proportion of DSD cases, a global diagnosis of DSD can be made, but no genetic cause can be identified. Doctors would very much like to be able to establish a genetic DSD cause for every intersex body.

From birth onwards, research into and examinations of children are aimed at determining their sex.9In this case, ‘sex’ as in the sense of both the biological sex and gender. Its purpose (still too often) is to enable normalizing treatments10These can be surgeries, but also treatments with sex hormones and conversations with health professionals, specifically with psychologists. based on the established sex.

For the intersex community, a healthy body is just as important as for the DSD community. But it is not important what that body looks like. It is about how intersex people experience their bodies, their lives and society. What they experience themselves is called ‘lived experience’.

Some health workers interpret this as ‘you can decide for yourself whether you are intersex or not’. Of course, this is not the case. First of all, intersex, just like DSD, is not an identity that depends on how you present to others. Intersex is the lived experience of people who are born with a body that does not fit within the normative social construct of male and female. This definition says that it is about what you experience because you were born with an intersex body and because society does not handle the existence of intersex people very well. Every intersex individual experiences the consequences of this, regardless of whether your body is ‘different’ and regardless of whether people know anything about your body.

Back to overview
Separator: start positie

3. Rainbow or black and white?

  • The intersex community…
  • The DSD community…
  • sees biological sex as a spectrum
  • sees biological sex as a dichotomy

Words like boy and girl seem to be proof that there are only two sexes (and also only two corresponding genders). Within DSD, sex is usually considered as such; if it is not immediately visible whether a child is a girl or a boy, doctors do their utmost to determine the sex as soon as possible. Intersex experts see sex differently; to them, it is a spectrum with an endless number of equivalent variations. Intersex is not a ‘third sex in between male and female’. It is a natural variation in which people are born with a body that does not fit within society’s normative construct of male and female.

When a child is born, the first question is usually “is it a boy or a girl?” In cases of DSD, this question is sometimes hard to answer. But health professionals will do everything they can to find an answer as quickly as possible. Very occasionally, specialized doctors are unable to provide an answer. In this case, in many countries the birth certificate will then state ‘cannot be determined’.11This is not a ‘third sex’; on such a person’s passport, the sex marker is an X. Due to international aviation rules, the X has a slightly different meaning: ”unspecified’. In the past, both doctors and legislators thought that within about three months, it would be determined whether a boy or a girl had been born. For that reason, it is often not specified in laws what should happen if the sex is still not known after three months. It is therefore possible that this situation could continue for a lifetime.

The fact that doctors do their utmost to determine whether a child is a boy or a girl means that they assume that there are only two sexes. Such a division is called a dichotomy.

Intersex is not a third sex, but a natural variation on the spectrum. Because there are many different intersex variations, but also because there is no standard for male and female, sex is a spectrum with endless variations. The child of which doctors have not been able to determine the sex also has a sex within that spectrum; only it is too young to tell others what it is.

Intersex can mean that a body has both male and female sex characteristics12For example, someone can have a vagina, but also XY chromosomes and testes, or someone can have XX chromosomes and so much testosterone that the body develops in a masculine direction., but it may also be that sex characteristics are not developed as expected 13For example, someone whose penis is very small compared to other people’s, or someone whose urethra does not come out at the tip of the penis but rather at the base., or that expected sex characteristics are absent14For example, someone who has only one X chromosome in each cell or someone with XX chromosomes, but without a vagina or uterus, or that additional sex characteristics are present15For example, someone who has two X chromosomes and one Y chromosome in each cell of their body..

In society, it is common to refer to yourself as a man or a woman. Most intersex people also do that. They are either a man or a woman. But there are also intersex people who experience their gender as intersex. Or as a hermaphrodite. Everyone is free to use a word of their own choosing for his/her gender.16NNID advises everyone to use the name/description they feel is appropriate for themselves and not to attack other people for the name/description they use.

Sex is not the same as gender or sexuality, but it cannot be completely separated from them either: intersex people have a sexual orientation and a gender identity/gender expression just like everyone else. Intersex organizations recommend filling in a sex on the birth certificate for every child (including the option ‘cannot be determined’) and to take into account that the birth certificate may need to be changed if the child asks for it later on.

Panel of The Great Wall of Vagina from Jamie McCartney. Used with permission of the artist.

One of the ten panels (48x80cm) of The Great Wall of Vagina, an artwork consisting of 400 plaster casts of labia, created by British coastal artist Jamie McCartney. The participants ranged in age from 18 to 76. Together they show that the natural diversity is enormous and that there are no ‘standard labia’. Used with permission of the artist.

Back to overview
Separator: start positie

4. Rights or treatment?

  • The intersex community…
  • The DSD community…
  • speaks of human rights
  • speaks of the best possible treatment

Of course, the intersex community and the DSD community want everyone to receive the best treatment without anyone’s rights being violated. The problem is that both groups talk about different treatment because their ethical standards are based on a different philosophical movement. While many health professionals focus on ‘the greatest good for the greatest group’, human rights experts focus on the protection of the individual. The latter is gaining influence, but this not always accepted, especially among doctors. Such a change in vision and action is called a paradigm shift.

Of course, rights are also discussed within the DSD community. But in a different way than in the intersex community. This is because medical ethics (or better, bioethics17The Encyclopedia of Bioethics defines bioethics as: ‘the systematic study of the moral dimensions—including moral vision, decisions, conduct, and policies—of the life sciences and health care, employing a variety of ethical methodologies in an interdisciplinary setting’ (Post 2004). The same book includes a chapter Law and Bioethics that states that bioethics is a train for which biology and medicine provide the fuel, philosophy the rails and law the driver who operates the points that determine the direction of the train. But despite that, in the voluminous (3145 pages) book, bioethics remains a discussion between physicians, philosophers, ethicists, and a few biologists – legal science is hardly represented. The Cambridge Textbook of Bioethics sees bioethics as a broader field in which, in addition to the initial focus on ethical issues, attention is also given to moral, political, and social questions arising from medicine, biomedical research, life sciences, and biotechnology; according to the authors, public policy and law constitute a separate field in which attention is focused on the way in which judicial and extrajudicial authorities can and should be involved in the regulation of research and clinical practice (Singer 2008).) assumes ‘the greatest utility (or well-being/happiness) for the common good (or the greatest group)’, This is called utilitarianism. This means that despite the empathy they may feel personally for an individual patient, doctors seek the treatment that has the desired result in as many people as possible. So the best treatment is actually the best treatment for a certain group of patients, and not necessarily the best treatment for each individual patient. If a treatment has a favourable result for 95 out of 100 patients, utilitarianism says that the right of the 95 patients prevails over that of the other five.

Everyone has the right to the highest possible standard of health. This is a human right that was formulated in 1946 and has since been adopted, in slightly different words, in many human rights treaties. In this case, the word health means well-being on a physical, mental and social level. It is not related to the absence of disease or handicaps. The International Covenant on Economic, Social and Cultural Rights explains that this right must be respected, protected and fulfilled.18In CESCR General Comment nr. 14: the Right to the Highest Attainable Standard of Health (Art. 12), article 12 of the treaty is further elaborated on. For intersex people, the word protected is especially important, because it means that the government is obligated to prevent violations of the right by others. More specifically: the government must introduce control measures and medical practices and professions must adhere to recognized standards, training, skills and ethical codes of conduct.

Human rights are closely linked to ethics. But it is a different kind of ethics than medical ethics. Human rights are individual rights and, when linked to health, derive mainly from deontological ethics. In these, an action that is bad remains bad, even if the outcome is good. If a treatment that can be postponed until the patient can decide for himself has the desired result in 95 per cent of cases, the operation must be postponed because there is a chance in every patient that the treatment will not have the desired result. Even in the cases where the outcome is desirable, deontology says that the treatment that is bad (i.e. deliberately choosing the unnecessary chance of an undesirable outcome) does not become good even with a desirable outcome. A concrete example: someone drives through a red light as a matter of principle and receives a fine in only 5% of the cases – the relatively low chance of being caught does not mean that the other 95% of red light offences are not committed.

The WHO says that health, and therefore the highest possible standard of health, is directly dependent on respect for human rights.

Human rights cannot be explained in a single paragraph, but it is like good and evil; most people have a pretty good intuitive sense of where good ends and evil begins. Human rights are also about good and evil. If a definition is needed, this would be a nice attempt: human rights are norms that protect individuals around the world from political, legal and social abuse. But a very important feature of human rights is missing: human rights are universal and inalienable; indivisible; interdependent and interrelated. This means, among other things, that all human rights are equally important and that you cannot state that they do not apply to a certain group or in a certain situation.

According to the WHO, health cannot be separated from social situation. It specifically states:

  • Human rights violations or the lack of attention to them can have serious consequences for health.
  • Health policies and programmes, by their design or implementation, can promote and violate human rights.
  • Vulnerability to ill health can be reduced by taking measures to respect, protect and fulfil human rights.
Back to overview
Separator: start positie

5. Equality or discrimination?

  • The intersex community…
  • The DSD community…
  • wants equality and acceptance.
  • discriminates by treating trans and intersex children differently.

Few words need be spent on this: that intersex children undergo surgeries from birth that transgender children can only legally undergo from the age of eighteen is a serious form of discrimination. This inequality is further highlighted by the growing number of health professionals who work within both DSD care and trans care.

The treatment of transgender people is defined in the Standards of Care for the Health of Transsexual, Transgender, and Gender Nonconforming People. This publication from World Professional Association for Transgender Health (WPATH) is intended to promote the highest standards of health care for trans people. Although the document barely mentions ages, a minimum age of 18 is used in the Netherlands for surgical procedures. For treatment with hormones, a minimum age of 15 is used. Puberty blockers are prescribed from the age of 11.

Before treatment with puberty blockers and hormones is initiated, the child must first go through a diagnostic process of at least five months. Despite the fact that many trans children and parents complain that these age limits interfere with the children’s happiness in life, it is clear that a careful process is being followed in which there is ultimately fully informed, free consent on the part of the child itself.

In DSD, this level of care is not observed. In a process that takes at most a few weeks, while the parents are under great social/mental pressure, a decision is made without the fully informed, free consent of the child to perform surgeries that are similar in both purpose and execution to those performed on trans people.

Intersex experts believe that medical treatments that can be postponed until the child can decide for himself, should be postponed. The specified age depends on the child’s development. It may be 16, the age at which a child is legally allowed to make decisions about his or her own health without parental participation in many countries. It could also be 14, the age limit proposed by Wiesemann et al. (Wiesseman 2010). In any case, the unequal treatment of intersex children and trans children must end.

Back to overview
Separator: start positie

6. Bodily diversity or not?

  • The intersex community…
  • The DSD community…
  • accepts physical diversity.
  • often denies that diversity.

Biological sex is not binary, but rather a diverse spectrum with infinite unique possibilities. This applies to primary sex characteristics, but also to other physical characteristics that may differ from what people think is normal in intersex people. For example, men with wide hips, men with breasts, women with a lot of body hair, women with small breasts, women who are short, men with long arms and legs, women with webbed necks, men with a feminine face, women with a deep voice.

Unlike the primary sex characteristics, these other body characteristics are visible. Intersex people are sometimes bullied for that. DSD experts can sometimes offer medical treatments for this, but intersex experts believe that you should be allowed to be who you are and that it is society that must change. This does not mean that they always reject a medical solution, however.

Give a carpenter a hammer and every problem looks like a nail. Of course, health professionals see that the various DSDs can affect how people look. And they also see that people are excluded and bullied because of this. They see that the rates of mental illness and suicide attempts are higher than in the rest of society. It is therefore obvious that everything is being done to help these people. But that they look for the solution in their own profession is called an institutional bias. This overlooks the fact that one’s own skills may not provide the best solution to help intersex people. It is even overlooked that it is questionable whether it is the responsibility of health professionals to solve the social problems of intersex people. Especially if that solution assumes that everyone can be adjusted to an idealized image of male or female with surgery, hormones, and psychotherapy, bodily diversity is denied and the right to bodily integrity is violated.

Intersex experts see the variation in gender characteristics as a natural variation in physical diversity. Or as one parent of a child put it, ‘one has a penis, another has a vagina, and you have a ‘frumm’.’ Projects like Great Wall of Vagina, Gynodiversity, and Labia Library show that there is great bodily diversity in labia.19Unfortunately, there are no public projects that celebrate the great diversity of the penis. Jamie McCartney, the creator of the Great Wall of Vagina has a tableau with plaster casts of penises, but otherwise an internet search yields mostly porn with penises that do not give a good impression of the real diversity.

But other physical diversity is also important within intersex: men with wide hips, men with breasts, women with a lot of body hair, women with small breasts, women who are short, men with long arms and legs, women with webbed necks, men with a feminine face, women with a deep voice. These are visible and less visible characteristics that people can be bullied for. Of course everyone is free to decide to do something about it, with surgery or with concealing clothing. But above all, you have the right to be yourself, without others bullying you.

Trans people have the slogan ‘becoming who you are’. For intersex people, the slogan is ‘allowed to be who you are’. Intersex people must be confident that it is not they who need to change, but society. Therefore, acceptance of physical diversity is perhaps the most important demand of the intersex community.

Back to overview
Separator: start positie

7. Inclusion or integration?

  • The intersex community…
  • The DSD community…
  • leads to inclusion.
  • leads to integration.

Inclusion or integration. Many people don’t know the difference. Although the two terms are often used interchangeably, there are numerous definitions in circulation that do not always say the same thing. Broadly speaking, it can be said that inclusion always leads to more diversity,20Diversity is the recognition that different groups exist within society and that all groups are equal. But it is also the recognition that a group is a full and equal part of society. This recognition of equality is important because multi-coloredness does not automatically lead to diversity. Without equality, diversity leads to discrimination. Diversity, by definition, is not about a particular group, but about everyone. However, a discussion about diversity can be about a specific topic. For example, sex diversity is discussed when the aspects of diversity linked to gender are meant. Both intersex and DSD stand for groups of persons that fall within the larger picture of sex diversity and are not the same as, but related to, gender diversity and sexual diversity. but that more diversity does not automatically lead to integration. In other words, integration is inviting everyone to your birthday party, inclusion is daring everyone to dance at your birthday party21A scholarly treatise on the differences between diversity and inclusion, complete with a good number of examples of what is seen within organizations as contributing to both concepts, is Disentangling the Meanings of Diversity and Inclusion in Organizations by Quinetta M. Roberson (Roberson 2006).

Both integration and inclusion have to do with diversity:

  • Integration is working on diversity at the group level, inclusion is working on diversity at the individual level.
  • Integration is necessary for the visibility of diversity, inclusion is necessary for the livability of diversity.
  • Integration results in a society with many, small closed societies, inclusion leads to a society with one large, open society.

The modus operandi of DSD experts has led to patient organizations slowly but surely integrating into society. But in doing so, the members of patient organizations remain invisible in society – it is the patient organization that integrates rather than the members of that group. In addition, only a fraction of intersex individuals are members of a patient organization. With an approach focused on integration, most intersex people remain invisible and excluded.  Intersex experts work in a different way to raise society’s awareness of intersex variations and to give intersex people the opportunity to become full members of society.

Four possible situations of social engagement: exclusion, segregation, integration, and inclusion. The following explains how an appeal to international law (the so-called top-down approach) leads to inclusion.

Until shortly after the turn of the century, intersex variations (the acronym DSD did not yet exist) were subject to secrecy imposed by doctors. Children, and often their parents, were not told what was wrong with them. Because they themselves were aware that there was something ‘different’ about them, they felt shame and exclusion. When patient organizations were established, at least some of them could meet in secret. For the most part, the organizations were totally invisible to other people. By now, patient organizations are becoming more visible in society and there is some degree (but it is not complete) of integration. At best, integration makes the group visible, but not the individuals – they remain invisible because they do not step outside the group. Because most intersex people are not members of a patient organization, most people still experience a high degree of exclusion.

To achieve inclusion, it is not enough to speak of intersex instead of DSD. The fact that DSD leads to integration and intersex leads to inclusion has to do with the approach taken by both groups of experts. The most general way to achieve social change starts with a single person looking for people who experience the same problem. Together they start an organization and begin to draw attention to the problem. This leads to national projects, national policies, and perhaps even national laws. At every step, the group is asking for money or attention, which means that the group is not seen as a collection of individuals. The group becomes integrated into society.

Just now the step to international treaties was skipped, because it is practically impossible for a small group to initiate or amend a treaty. But what if a start is made there? By appealing to the United Nations for international treaties22Many people think that the constitution is the supreme law, but since 1953, international law, which derives from signed and ratified international treaties, is a higher law than a country’s constitution., it can be tested whether the national laws and policies comply with international law. UN rulings can thus have a major impact on a country’s laws and policies. Of course, this in turn will affect the other layers, right down to the situation of an individual.

The beauty of this path is that at every level the same demand is made: treat me the same as other people. The resulting changes in laws and policies improve the situation for all intersex people, regardless of whether they are members of a patient group. The result is inclusion.

Back to overview
Separator: start positie

8. Support or therapy?

  • The intersex community…
  • The DSD-community…
  • requires psycho-social support because society accept intersex people sufficiently.
  • offers psychotherapy, for example, to accept the body characterized as ‘abnormal’ or to reduce the large number of suicide attempts.

The issue here is the difference between change and acceptance:

  • Does a psychologist help you change people who don’t understand intersex variations?
  • Or does a psychologist help you accept the fact that people don’t understand DSD?

In the first case, society changes; in the other, you are expected to change. This has a lot to do with how you view intersex and DSD; is it a natural difference or is it a treatable disease?

The number of suicide attempts and mental health problems in intersex people is disturbingly high compared to the rest of the population (Falhammar 2018, Khorashad 2018a). But it is unclear what causes this. There is no evidence that these problems stem from the DSD diagnoses themselves.

Many parents report wanting psychological support for themselves (Bennecke 2015). It is not clear whether the heavy focus on the parents’ wishes and interests is also in the best interest of the child (Chase 2003, Diamond 2006a). Parents of 46,XX children with CAH are for the most part willing to have the clitoris reduced at a very young age, even if it risks reducing genital sensitivity, while it is also unclear if treatment is in the child’s best interest (Dayner 2004).

Many intersex experts see great problems with current medical treatments and psychological counseling. It is therefore paradoxical that they still see a role for psychosocial support. The paradox is caused by the interpretation of the word ‘help’.

If demand for help is seen as a demand for supply, and aid workers “pull” every need for help to themselves, people’s ability to take care of themselves disappears. At the same time, the social worker gains more and more power over the person seeking help. Thus helping is not harmless (Mol 2008a).

That interpretation of demand for help was abandoned by most medical professions as early as the 1970s. But not so in the intersex community, where the fear of a possible negative reaction to sex diversity from society still guides treatment. Intersex experts prefer to see that a response is only given if (expressly if) society actually reacts negatively. Good psychosocial help is necessary for this.

Research shows that mental health problems and suicide attempts are significantly more common in intersex individuals than in the rest of the population (Falhammar 2018). There is no research showing that this is caused by the diagnosis itself. However, research does show that parents have a very difficult time after the birth of an intersex child 23 In 2010 Fedele, et al. wrote: The 2006 consensus statement on DSD notes “It is generally felt that surgery that is performed for cosmetic reasons in the first year of life relieves parental distress and improves attachment between the child and parent etc.”. Indirect evidence for this is provided by the fact that some parents choose early genitoplasty for their children despite the acknowledged risk to sexual function resulting from such procedures. […] Perhaps caregivers are fearful that others will observe their child’s ambiguous genitalia and question their gender. Other fears may include the belief that atypical genital anatomy leads to atypical sexual behavior.(Fedele 2010) 24Halley Crissman, et al. describe that even more specifically in 2011: Parental concerns that persisted after surgery included (1) gender identity: “I worry that at some point he’s going to feel like he’s a woman trapped in a man’s body, even though his female structures were removed,” (2) gender role: “She throws in the ‘Mom, will you paint my nails?’ and I go fall over and do it right then and there… I dropped all that I was doing and painted her fingernails because she wanted to act like a little girl,” (3) peers: “I worry he’s going to be in gym class and people are going to notice things… I just always worry that, you know, that that will be frustrating for him to deal with in the future,” (4) romantic partners: “The surgery can only fix so much, it’s not going to look exactly normal. In the future, a husband or boyfriend may not be okay with it,” (5) fertility: “[I worry about] him being able to have children and be able to feel that he is adequate,” and (6) sexual orientation: “He’s had so many problems. Is there a possibility of, you know, homosexuality?” (Crissman 2011) – many parents indicate that they would like psychological support for themselves (Bennecke 2015). It is not clear whether the heavy focus on the parents’ wishes and interests is also in the best interest of the child (Chase 2003, Diamond 2006a). Parents of 46,XX children with CAH are for the most part willing to have their child’s clitoris reduced, even if it risks reducing genital sensitivity and it is not clear that treatment is in the child’s best interest (Dayner 2004). If gender is not immediately clear, gender assignment can be extremely challenging for the family and health professionals (DSDNet 2013).

Parents want their children’s lives to be as ‘normal’ as possible (Dessens 2008) and this causes a lot of stress (Crissman 2011, Dreger 2006a, Slijper 2000a, Wisniewski 2012, Brain 2010). It appears that many parents/guardians do not cope well with the stress associated with intersex/DSD (Fedele 2010) and that children also experience this in parenting (Frisén 2009).

The consequences for children raised by parents with mental health problems have been studied at length: these Children of Parents with Psychological Problems (Kopp), for example, have a three to thirteen times greater risk of ever developing a mental health and/or addiction disorder themselves (van der Zanden 2017). At first glance, parents may seem to face more serious problems with Kopp than with intersex. But that is a misjudgment – it has already been shown in several studies that parental stress resulting from their child’s diagnosis25for example juvenile arthritis, type 1 diabetes, cystic fibrosis and sickle cell disease can be the cause of depression in the child (Wagner 2003).

The stress caused by doctors and parents – even though it is unintentional – can be reduced by demedicalization.26Demedicalization is not stopping all medical involvement in intersex or DSD. On the contrary, proper demedicalization leaves more time and money for the medical help that is needed. Currently, people need therapy because they are expected to adapt to the values of society, and this is very difficult. By demedicalizing, the solution is shifted from the client and the psychologist to society. This is good for all concerned, but it won’t happen without changes in society.

For this reason, intersex experts recommend that intersex children be offered psycho-social support as protection against a society that is insufficiently accepting of intersex people. Where appropriate, parents of intersex children should receive professional help in fully accepting the intersex variations of their child and others.

As difficult as it may seem, one day society will change. Then psychosocial help will no longer be needed. And neither will psychotherapy. The same has happened with homosexuality. Until 1990, homosexuality was considered a disease, and in some countries it still is. There were and are numerous books and scientific articles describing how homosexuality would be ‘curable’. None of those methods work, of course. Only after society had taken a major turn for the worse did psychiatrists (in 1973) and the WHO (in 1990) come to the realization that it was not a disease after all.

Until then, intersex experts seek help from psychologists.

Back to overview
Separator: start positie

9. Bodily integrity or body ‘normalization’?

  • The intersex community…
  • The DSD community…
  • demands bodily integrity and the right to make one’s own decisions.
  • Offers physical ‘normalizing’ and non-consensual non-therapeutic treatments.

The positions of the experts boil down to intersex experts saying that gender-affirming treatments by health professionals should be delayed until the intersex child can decide for him- or herself, while the DSD experts, on the one hand, insist on operating as early as possible and, on the other hand, say that this kind of treatment has not been performed for a long time. It is too easy to say that either side is wrong, because both groups speak a different language, in which words sound the same but have completely different meanings. This effect was described by Thomas Kuhn in The structure of scientific revolutions, as part of paradigm shifts. He called the phenomenon incommensurability: the words are no longer translatable one to one (Kuhn 1962). In this case, it means that health professionals no longer perform (or have replaced such procedures with other treatments) certain treatments in certain situations in what they understand to be intersex, while there are still treatments that intersex experts believe violate the right to self-determination and the right to bodily integrity.

The European Society for Paediatric Urology (ESPU) and the Society of Pediatric Urology of the United States (SPU) believe that physical “normalization” is best done when an intersex child is still very young. The arguments are that

  1. Long-term follow-up research deals with surgical results from 20 years ago that were performed using techniques that are no longer used today,
  2. while there are no guarantees that current techniques are superior, 15 years must pass before current procedures can be evaluated,
  3. current techniques are designed to protect important functionality and anatomical structures (particularly the nerves leading to the clitoris). (Mouriquand 2014)

Proponents of surgery at an early age claim that the surgery is technically simpler with possibly less psychological impact than genital surgery in adolescence. The latter would carry a much higher risk of complications, as the extent of the procedure is even greater and there are very few surgeons with experience in this area. Importantly, ESPU and SPU say, opponents of early surgery have no evidence that late surgery is better. (Mouriquand 2014)

In 2015, in response to Dr. Margriet van Heesch’s dissertation, for which dozens of intersex people were interviewed, two doctors sent a letter to the Dutch paper Volkskrant on behalf of their professional organizations. This was published on June 6, 2015, under the headline Obsolete abuse. The doctors argued that ‘hundreds of children are subjected to genital surgery every year on good grounds’ (de Jong 2015). It is clear from the letter that these procedures are medically unnecessary, and carried out on young children. From Tom de Jong and Concetta Salvatore’s letter to the Volkskrant:

‘Let it be clear that every year hundreds of children need surgery on their genitals on good grounds with excellent results and without consequences for their later functioning, both psychologically or sexually. […]In addition, there are girls with severe abnormalities of their external genitalia, in whom there is no doubt whatsoever about gender. They have a normal female chromosome pattern and normal female internal sex, ovaries, uterus and vagina. There are excellent arguments for operating on these girls at an age where they are not bothered by their abnormal external sex.’ (de Jong 2015 )

Also in a video on the Dutch patient group DSD-Cyberpoli website, a doctor associated with one of the DSD centers confirmed that unnecessary medical treatments, which can be postponed with no issues for health until the child can decide for itself, are still performed at the request of the parents.

A severe curvature is [glossary_exclude]not an acute reason[/glossary_exclude] to operate, but the child is probably going to suffer from it. Then you can decide with the parents to operate on that at a young age. Many children are operated on as early as baby or toddler age.

A pediatric neurologist said even more emphatically in 2019 at a congress for sexologists that in the case of intersex, it is left up to the parents whether a postponable operation is performed at an early age anyway. In summary, this physician said the following in the presentation:

  • Parents’ wishes may be reason enough to allow young children to undergo surgeries that are not medically necessary.
  • These surgeries result in reduced functionality of the operated genital tract.
  • Such operations are irreversible, for example, because skin from the phallus is used for the labia minora, or because the external erectile tissue of the phallus is removed.
  • Over 10 percent of children that are ‘normalized’ to girls do not develop a female gender identity.

This course of action is also confirmed on the website of one of the DSD centres:

Depending on the severity of the condition, the wishes of the girl and/or her parents, a decision may be made to perform surgery. A decision to operate is made only after all the research surrounding the diagnosis has been completed, the patient has been discussed in our multidisciplinary team and the pediatric urologist at the outpatient clinic has given all the explanations about the operation, including the pros and cons. Sometimes a joint decision is made to choose to do surgery as early as baby age and sometimes the operation is postponed until a later time.

These statements by doctors show that medically unnecessary treatments are performed on young intersex children, and that doctors are aware of the negative consequences of these treatments. All in all, there is sufficient evidence that Dutch physicians are willing to normalize young intersex children and do so in practice at the request of parents.

On June 6, 2015, the Dutch paper Volkskrant published a letter from Tom de Jong27On behalf of the Working Group Paediatric Urology of the Dutch Society of Urology and Concetta Salvatore 28On behalf of the Working Group on Child and Adolescent Gynecology of the The Dutch Society for Obstetrics and Gynecology. This letter states, among other things:

‘Let it be clear that every year hundreds of children need surgery on their genitals on good grounds with excellent results and without consequences for their later functioning psychologically or sexually. […]In addition, there are girls with severe abnormalities of their external genitalia, in whom there is no doubt whatsoever about gender. They have a normal female chromosome pattern and normal female internal sex, ovaries, uterus and vagina. There are excellent arguments for operating on these girls at an age where they are not bothered by their abnormal external sex.’ (de Jong 2015)

Partial transcription of a presentation at the NVVS Najaarscongress that took place in De Reehorst in Ede on Friday, November 29, 2019. In connection with the privacy of the doctors involved, their real names are not used here and they are referred to as doctor B and doctor C.

In late 2019, Dr. B said at a conference that this team performs medically non-emergency treatments, that the demand from the parents is leading, and that the team is aware that this is not allowed. Doctor B says about a young boy:

[..]these parents had a strong desire to have this child undergo surgery to make him look a little more boyish. We do that kind of surgery too. […] And about a girl, Dr. B says:

Then you have another large group of girls who are born with unclear gender, are the girls with AGS.  […] Those are children where parents are very concerned how such a child should grow up with a kind of a penis, where we discuss with those parents all the options, from guiding that child and waiting until it is able to decide for itself what it wants in terms of surgery and there are parents who absolutely cannot handle that who decide in dialogue anyway to operate at a young age.[…] She acknowledges that the result is not entirely natural, but more importantly, also acknowledges that the surgeries, including a clitoral reduction, lead to reduced function:

And if you look at the sexual function of women with AGS is that, a number of studies then show somewhat reduced function, which in itself is not very surprising when you consider that a whole number of these women have had a clitoris reduction plasty and a plasty of the entrance to the vagina. In which some decreased sensation in the clitoris is also measured. Difficulty in vaginal penetration and that they do engage in less vaginal sex.

Also problematic is that a significant percentage of girls (over 10%) with AGS do not develop a female gender identity:

[…]That nearly 90% of girls have a female gender identity. […] In feminizing surgery, part of the phallus is used for the labia minora:

Also use some skin from the phallus actually to suture in labia minora.

This is not only problematic for the more than ten percent who do not develop a female gender identity, because for the entire group of children it is unknown which gender identity they will develop. This means that with every patient there is a chance that the treatment will deprive a child of his or her right to personal development. This happens because the doctor believes that there are technical advantages to early surgery:

[…]why on earth would you do that at baby age, a child doesn’t need a vagina. That is true. But there are a number of advantages to why we sometimes decide to do that anyway. The tissue is easier to work with, it’s more flexible, it heals better. And it doesn’t mean it’s all right forever, but if something has to be done with it, the distance to the depth of the vagina is shorter and easier to reach. So those are technical advantages.

Research shows that this assumption is incorrect. Both boys and girls often require repair surgery later in life, for example, because of scar tissue or hair growth in the urethra. The real reasons are apparently social. From the audience, Dr. B received support from Dr. C who works in another DSD centre:

I find this one of the most difficult things; I understand that people want to decide for themselves about their own genitals, that seems logical. But you’re dealing here with newborn children where sometimes the genital is grossly abnormal even as the child, if those labia get a little thicker, and if parents completely don’t accept that, then you have a problem, because it’s then also about the fact that the parents have to accept the child. And then we move on.

Dr. B also mentioned social reasons:

There are parents who come up to me and they say “yes you can speak all you want, and I do understand that that is argued in society circles, but I live in this small village and my child is going to play soccer and then it just is a boy.”

[…]

Because we couldn’t work it out, we once organized a debate with our ethicist in our multidisciplinary consultation. We tried to put all the arguments concerning surgery on the table, with each other, so really people who are also involved in this in practice or by being on the team. To really get to the essence. And then we got very difficult around the will, on the bodily integrity. If you see the bodily integrity of the human being as the highest good, then I am a criminal. Yes, you could put it that way.

In summary, Dr. B said the following in the presentation:

  • Parents’ wishes may be reason enough to allow young children to undergo surgeries that are not medically necessary.
  • These operations result in reduced functionality of the operated genital tract.
  • These operations are irreversible, for example, because skin from the phallus is used for the labia minora, or because the external erectile tissue of the phallus is removed.
  • Over 10 percent of operated children do not develop a female gender identity.

Dr. B’s statements in a presentation to the medical profession demonstrate that medically unnecessary treatments are performed on young intersex children, and that physicians are aware of the negative consequences of these treatments.

Scientific research shows that parents view cosmetic surgery as a “fix” (Crissman 2011, Fedele 2010, Wisniewski 2012, Sanders 2012). This contradicts the advice of physicians and ethicists who call for restraint in surgery (Hughes 2006, Minto 2003a, Crouch 2008, Nordenström 2010, Wiesemann 2010) because:

  • surgery must be performed again later (van der Zwan 2013a, Creighton 2004a, Callens 2012a),
  • the sensitivity of the operated tissue is reduced (Crouch 2008, Minto 2003a, Nordenskjöld 2008),
  • scar tissue develops (Lee 2013),
  • that interferes with sexual functioning (Nordenskjöld 2008, Park 2011), and
  • there is a large natural variation(Lloyd 2005a).
  • German research shows that almost 41 percent of parents themselves report that they did not understand the information about their child’s diagnosis (Bennecke 2015). When parents who have not understood the information about the diagnosis still consent to major surgery, it is irrational behavior. Yet doctors say that parents are pressuring them to initiate “normalizing” treatment.

When doctors go along with this, the argument is often made that the parents have a legal right to raise their child their way and to make decisions for their child. But there are many things we don’t allow parents to do. If a doctor notices parents beating their child or a child being sexually abused, the doctor is mandated to report it. The right of the child then takes precedence over the right of the parents. A child who has unnecessary medical treatment forced upon them by the parents deserves the same protection from doctors. 29Incidentally, it is questionable whether only parents are to blame for the pressure doctors experience. Streuli et al. have shown that communication between parents and practitioners plays a major role. Third-year medical students who played the role of parents were much more likely (66%) to choose surgery at a young age after watching a ‘medicalized’ video starring an endocrinologist than those who watched a ‘demedicalized’ video in which a psychologist talked about intersex (23%). Remarkably, all ‘parents’, i.e. regardless of whether they chose early surgery or not, believed that their choice was primarily based on their own values, opinions, and attitudes.(Streuli 2013)

Pressure from physicians may also arise from judging the genitalia of intersex children as worse than the parents before surgery and better after surgery. Research in the US shows that prior to genital surgery in intersex children, surgeons are significantly more likely to be dissatisfied or very dissatisfied with how the genitals look than the parents. Before surgery dissatisfied or very dissatisfied with the appearance of the genital: doctors 100%, mothers 63%, fathers 48%. After surgery, the values are closer together, but doctors are still less satisfied than parents. After surgery satisfied or good: doctors: 88%, mothers 94%, fathers 92%. (Nokoff 2016)

Parents who pressure doctors to force ‘normalizing’ treatment should be seen as patients.

There is often discussion on the right of parents to make decisions for their children. This is not correct. We should speak of the duty of parents to make decisions for their children in emergency situations that cannot be postponed until the child can decide for himself. This includes the duty to put themselves second and put the interests of the child first, and not to be guided by their own interests or by their fears. In the case of intersex, there is no emergency (although parents may feel that way due to catastrophizing) and decisions about any medical modification can be postponed until the child can decide for themselves.

‘Children of parents’ should not be read as in the sense that parents may decide about their children as if they were their property. If parents decide for a child at all, they may only do so if a child is incapable of making such a decision himself. For treatments that can be postponed or that are not needed at all, a child is capable of deciding for him-, her- or themselves once they enter adulthood.

Origin

The demand for bodily integrity and the right to self-determination is reflected in the Public Statement by the 3rd International Intersex Forum. This meeting took place in Malta from November 29 to December 1, 2013. Hence, the statement is also known as the Malta Declaration. 34 intersex individuals representing 30 organizations from around the world formulated a set of demands that must be met in order to improve the situation of intersex people. Three of those demands have to do with the right to bodily integrity and the right to self-determination:

  • Ending mutilating and “normalizing” practices such as genital surgery, psychological and other medical treatments through legislation and other means. Intersex people should be empowered to make their own decisions that affect their bodily integrity, physical autonomy and self-determination.
  • Ending non-consensual sterilization of intersex people.
  • Depathologization of variations in sex characteristics in medical guidelines, protocols, and classifications, such as the World Health Organization’s International Classification of Diseases (ICD).

The demands for the right to bodily integrity and the right to self-determination have been adopted, mostly in different wording, in motions adopted by the European Parliament and the Parliamentary Assembly of the Council of Europe, but can also be found, for example, the Yogyakarta Principles YP+10.

Back to overview
Separator: start positie

10. Who decides?

  • The intersex community…
  • The DSD community…
  • wants medically unnecessary treatments to be postponed until the child is old enough to decide for itself.
  • thinks parents should be allowed to make decisions for their children about medically unnecessary treatments.

It is often thought that intersex experts are against any medical treatment designed to make an intersex body conform more to the existing image of male and female. But that view is incorrect. Intersex experts and DSD experts differ on who should be allowed to consent to that kind of treatment. In life-threatening situations, parents may always decide for a child – doctors may even treat without the parents’ consent if nothing else – all experts agree on that. But in all other situations, intersex experts think the right to bodily integrity and the right to self-determination are most important, while DSD experts think parents should have the right to decide for children.

Back to overview
Separator: start positie

11. Quality and normality

  • The intersex community…
  • The DSD community…
  • is satisfied with a good quality of life.
  • is satisfied with a ‘normal’ body.

Of course, some things are not mutually exclusive. You can have a good quality of life and choose gender-affirming treatment. The contradiction is that intersex experts believe that a good quality of life is possible without gender-affirming treatments, while many DSD experts believe that a ‘normalizing’ operation at an early age is necessary for a good quality of life. It is mainly the parents and health professionals who are only satisfied with a ‘normalized body’. A ‘normal’ body is something that doctors cannot provide – it will always be noticeable that a body has been changed to fit the common male/female image.

Back to overview
Separator: start positie

12. Society or patients?

  • The intersex community…
  • The DSD community…
  • wants to change society.
  • wants to change patients.

In general, intersex experts and DSD experts work in different scientific fields, but also literally in a different environment. This means that they solve problems in a different way, but more importantly, that those solutions affect a different environment. The solutions that social scientists see will affect society, while the solutions of medical professionals are patient-centered. Therefore, it can be said that intersex experts want to change society, while DSD experts want to change patients.

DSD experts view DSD as a classification of a number of diseases. DSD is named as a disease in both the APA Diagnostic Statistic Manual 5 (Mottier 2015) and WHO International Classification of Diseases 11th revision. But what is disease? Or a better question: what is health? WHO International Classification of Diseases 11th revision,

American philosopher Christopher Boorse has explained that to call a certain state unhealthy is at least in part to condemn it – he calls it ‘normativism’ (Boorse 1975). But he also says that health can be described in the objective terms of the functions typical of the species to which the organism in question belongs and that health is a positive non-normative and universal notion in which there is no place for ethics because ethics is precisely subjective and normative. Put more simply, Boorse thinks that you only have to look around you to see what is healthy – the average person is the epitome of health. Just as a bicycle mechanic can determine if a bicycle is in “perfect condition,” a physician can empirically determine if a person is healthy. (Have 2009) 30Boorse’s vision does have some drawbacks. Health, after all, is by no means always dependent on ‘the functions that are typical of the species’. And, moreover, it is often subjective. To stay with the example of the bicycle: a bicycle may be able to do everything a bicycle is supposed to do (the essential functions are in order), but if the frame is rusting away from the inside, you can hardly say that the bicycle is in perfect condition. Conversely, a road bike can be in perfect condition despite not having a luggage rack. Someone with fatty deposits in the veins of the heart can do everything (functions are fine), but you can hardly say that someone with an impending heart infarction is healthy. Conversely, someone who is color blind or cannot have children can still be perfectly healthy. Boorse also assumed that deviations from the norm that were not essential may not contribute to unhealthiness, but may also not contribute to health. But there are plenty of examples that prove Boorse wrong on that point too: well-known examples include diseases that can literally decimate the population where the survivors are precisely the people with the deviation from the norm.

Health is often linked to the ability to reproduce – not being able to reproduce (anymore) is seen as a serious illness from that perspective.

By society, intersex issues are too often seen as ‘issues intersex people have’. But it is a problem of society – it is our problem, all of ours. This is not acknowledged, or not acknowledged enough. 31The same goes for other minorities: society thinks minorities should adapt, rather than society needing to change. You don’t solve that problem by adapting a child in such a way that society no longer notices that he or she is an intersex child. Nor can that problem be solved by teaching every child to cope with a society that cannot deal well with intersex variations. Still, the latter solution is better than the former (Fordham 1986).

Adapting a child to society

The disadvantage of adapting a child to society is that this process will never end. Even if the understanding arises that a child does not need to be physically adapted to society, lifelong psychological counseling will be necessary, to help the self-denying intersex person survive in a hostile society. And that will need to be provided for every single intersex child that is born. Only when society becomes intersex-inclusive will this process be stopped, but by then numerous intersex persons will have been needlessly damaged.

Teaching child to cope with society

In doing so, the child does not have to deny himself – that is already a big advantage. But still, lifelong therapy is needed to help the intersex person survive in a hostile society. Only when society becomes intersex-inclusive will this process be stopped, but by then numerous intersex persons have already been needlessly damaged.

Change society

In both methods, the process can only be stopped by making society intersex-inclusive. To achieve that change, intersex experts say, it is necessary for intersex people themselves to play an important role. For that reason, during that change, good psychosocial help must be available to those who need it.

Back to overview
Separator: start positie

13. Being who you are

  • The intersex community…
  • The DSD community…
  • believes that intersex people should be allowed to decide for themselves how they designate themselves and whether they see themselves as part of the intersex community, the DSD community, the LGBTI community, or any community.
  • rejects the concept of intersex, collaboration with LGBT organizations, and intersex as part of LGBT policy because ‘the majority of medical professionals, and many patients and parents’ oppose it.

The medical community generally views intersex variations as conditions or syndromes. Because it is seen as something medical that can be treated with drugs and matching treatments, cooperation with LGBT organizations is seen as irrelevant. LGBT, in their view, has nothing to do with intersex variations. They also reject the term ‘intersex’ and speak of DSD. Sometimes parents of intersex children also prefer not to associate with LGBT+. This has to do with how they see LGBT+, so they prefer to distance themselves from it. For them, association with LGBT+ is undesirable, and maybe even scary, because they see it as something ‘other’ than ‘the normal’.

The intersex community sees intersex variations as a social phenomenon. Intersex shows that the ideas we have in society about ‘men’ and ‘women’, and how we divide the world into these two categories, are incorrect. There is far more diversity in the world. Gender includes many forms of men, many forms of women, and many forms that do not fit into the existing ideas of men or women. And all of these unique variations are allowed to exist. Collaborations with LGBT+ organizations are valuable, because LGBT people, just like intersex people, have to deal with similar issues (discrimination, exclusion, misunderstanding, etc.). Intersex people are allowed to choose how they identify. Sometimes intersex people like to say they are intersex. Others prefer to say that they have a form of DSD, or mention the specific DSD diagnosis. Choose what you are comfortable with.

Back to overview
Separator: start positie

14. Where does it take place?

  • The intersex community…
  • The DSD community…
  • is in society.
  • is in hospitals and patient groups.

The term DSD is used primarily by health professionals in the medical field. DSD denotes the medical aspects of intersex as a “difference” from “the normal. In the medical field, people who have some form of intersex are referred to as DSD patients.

Intersex is about changing society, not about changing intersex people. This is because the problem lies with society and the general ideas that go with it. Society needs to break free from the male/female dichotomy, and move toward a society that accepts the many forms of diversity. Gender is not a binary dichotomy, but a spectrum with infinite equivalent variations.

Back to overview
Separator: start positie

15. (De)medicalization

  • The intersex community…
  • The DSD community…
  • in one word: demedicalization.
  • in one word: medicalization.

DSD is not just a name, it is, because of the words that make up DSD, simultaneously a definition and the start of a diagnosis. Although a clear diagnosis is only important if the patient’s life depends on it, health professionals try to find a (genetic) diagnosis for every intersex individual.

The reason is not necessarily purely medical. To sell a drug, says George Lakoff, it must have been tested for safety and effectiveness through randomized, placebo-controlled trials.32The United States had a law in place since 1938 to ensure the safety of drugs, but the current form of control was not introduced until 1962 after William Merrell Company distributed for “research” two million tablets of the unapproved Kevadon. (US Food and Drug Administration, 2014) Kevadon, also known by the generic name thalidomide and in the Benelux under the brand name Softenon, was prescribed as a remedy for pregnancy morning sickness and insomnia, but led to babies with severely deformed limbs and other, often fatal, health problems. This requires that both the disease and the people with the disease be accurately distinguished from other diseases and people with a different disease. Without subjects with the correct, I would almost say ‘certified’, diagnosis, trials cannot take place. In addition to being necessary to get the largest possible study population, a diagnosis is also a mandate to carry out clinical treatment by establishing treatment protocols and rationalizing health care33In some countries, such as the Netherlands, a diagnosis is necessary in order to get medical insurance to pay for treatment, partly in order to stimulate market forces in health care.. A diagnosis has become a bureaucratic tool to control people (Lakoff, 2006).

Thus disease has become a stable entity that can (and will) be thought of outside the body of people, and that can be explained in terms of specific causal mechanisms in the body of the person suffering (more simply put: a disease is a thing that does arise in the body of a person, but can be seen as something separate from that body). The personal narrative is thus eliminated; experience becomes ‘machine readable’ – but at the same time that experience is shaped by medical knowledge. (Rosenberg, 2002)

The fact that doctors have become heavily reliant on a diagnosis has greatly contributed to the medicalization of intersex variations.

It is often thought that intersex experts are only interested in a legal ban on genital surgery that can be delayed until a child is old enough to decide for himself. But demedicalization is the reduction of medicalization in order to achieve better care. Nor is medicalization necessarily the fault of health professionals. Rather, the cause of the medicalization of intersex variations must be sought in homophobic, transphobic, interphobic, and heteronormative norms and values that exist in society. Health professionals are merely instrumental in this. What they do choose are the tools used in medicalization:

  • Overdiagnosing
    Diagnosing a person without it benefiting said individual;
  • Overdetection
    Finding a health-related fact, often through the use of technology in testing, with no net benefit to the person;
  • False positives
    Except in the classical sense in which a test falsely yields a positive result, false positives here refers to the gray area between ‘normal’ and ‘abnormal’ tissue or function;
  • Overtreatment
    Treatments offered by individual health professionals from which a patient derives no net benefit;
  • Overutilization
    Implementing standard health care practices that provide no net benefit to patients or citizens;
  • Expansion of definitions or ‘disease mongering’
    Expanding official disease categories, or creating new conditions, or promoting more frequent diagnosis of recognized diseases, with no net benefit to patients or citizens or creating ‘diseases’ out of behaviours or feelings that fall within normal human experience and exhorting the public to use health services, especially tests and medications, for these ‘diseases’.
  • Overmedicalization
    Changing the meaning or the understanding of peoples’ experiences, so human problems become medical problems that require medical attention, with no net benefit for patients or citizens. (Carter 2015)

Along with medicalization, undertreatment can also occur. This occurs when medical attention is focused on aspects of the diagnosis that do not require treatment, leaving less time and money available for aspects that do require treatment.

Back to overview
Separator: start positie

Discussion

The medical approach to DSD and the human rights approach the intersex community uses differ significantly; the proponents of both views34This expressly includes not only intersex people and those with a DSD diagnosis, but also other stakeholders such as family members, health professionals, scientists/researchers, policy makers, journalists, and so on. form two cultures that differ from each other in a similar way to the cultures visible in people of different ages or in different geographical origins. On the outside, there appear to be many similarities between the two groups, while the members of the groups consider the differences to be important. It is therefore not surprising that a forced conflation of DSD and intersex leads to acculturation conflicts 35 Acculturation conflicts occur when two meeting cultures differ so much that the individuals in the separate groups turn on each other: young versus old, Friesland versus the Randstad, and intersex versus DSD. This does not benefit any of the individual groups. It is therefore recommended that a clear distinction be made in policy between intersex and DSD. Based on the differences discussed earlier, it must be concluded that intersex belongs in equal rights policy and DSD in care policy.

Paradigm shift

The differences between intersex and DSD are the result of an ongoing paradigm shift,36A paradigm shift as described by Thomas Kuhn in The Structure of Scientific Revolutions (Kuhn 1962) from medical issue to social acceptance. 37For sexual orientation and gender identity, similar paradigm shifts began decades earlier. This shift has been occurring on both sides since 2006, the year the name DSD was introduced. The intersex community wants the term “intersex” to be seen as the “new paradigm” trying to replace the “old paradigm” of DSD.

Thomas Kuhn

According to Thomas Kuhn, the philosopher of science who described the phenomenon of the paradigm shift in detail in his magnum opus The Structure of Scientific Revolutions, a common past history of two different visions (here intersex and DSD) leads to a ‘language problem’ because both groups of users continue to use the same words, but in a different context and with a different meaning. As a result, both sides do not understand the other when they want to convince each other of their views.38Kuhn calls this incommensurability of language. On top of that, the different groups only understand each other if ‘translators’ name the differences and explain them in different words. This makes it possible for adherents of the old paradigm to switch to the new paradigm. But that does not make them able to think and work with the new paradigm. Kuhn is very adamant about this:

Either one discovers within oneself that one is fully convinced of the new view, but is nevertheless unable to process it and is not at home in the world created by the new view,[…]. Intellectually, such a person has made his choice, but he is not converted[…]. Nevertheless, he is able to use the new theory, but he does so as a stranger in a strange environment, for he only has this alternative at his disposal because other people have grown up with it. His work parasitizes their work, for he lacks the ability to think in a certain way, an ability that future members of the community will acquire through their education. (Kuhn 1962)

Conclusion

Based on Kuhn’s work, it can be expected that intersex and DSD will grow even further apart in a theoretical sense. This need not be a problem if both groups remain open to each other so that “translators” can continue to work to bring individuals in both groups closer together. This is a process that cannot be controlled by policy.39This may wrongly give the impression that the people we are talking about, intersex people, have no influence on the process. Intersex people active in the DSD community have a clear influence on the development of the medical approach through patient organizations, while intersex people in the intersex community have an equally strong influence on the development of the human rights approach. It is therefore important that both groups are able to work independently of one another; an organization that wears two hats will not effectively contribute to the paradigm shift.

Even if the medical approach turns sharply toward a human rights approach, it is not to be expected that a single vision will eventually emerge. Nor does it have to, it is just important to strive towards good health care for intersex people. This takes time. For example, health care for gay, bi, and MSM (men who have sex with men) originally focused on conversion therapy, but after the paradigm shift, the focus was on protection from HIV and AIDS, among other things. But the paradigm shift for DSD and intersex will not be completed in the next 20 years40This expectation is based on the pace of the paradigm shift for sexual orientation and gender diversity. and for as long as the shift may take, intersex and DSD must be viewed as strictly separate policy areas.

Back to overview
Separator: start positie

99. Where do I find more information?

NNID

Netherlands organisation for sex diversity

NNID

NNID is an intersex led human rights organization working on the rights and equality of intersex people, and promoting the visibility and acceptance of intersex and the broad spectrum that is biological sex.

WEBSITE

OII Europe

Nederlandse contactgroep

OII Europe

OII Europe is the umbrella organization of European human rights-based intersex organizations. OII Europe is working towards the protection and full implementation of intersex people’s human rights in Europe.

WEBSITE

UN Factsheet

Information from Free & Equal

Factsheet United Nations

Recommendations for member states on legal protection and equal treatment of intersex people.

PDF

Intersex rights EU

Focus-paper from the EU Fundamental Rights Agency

Intersex rights EU

The EU Fundamental Rights Agency (FRA) published a short report in 2015 on the situation of intersex people in the 28 countries of the European Union: click here. More recently, the EU Fundamental Rights Agency (FRA) also conducted a survey on LGBTI people in the EU and North Macedonia and Serbia in 2019. With almost 140,000 participants, it is the largest survey of its kind. It follows the agency’s first survey on LGBT people in the EU, conducted in 2012. The new survey results show little progress over the past seven years.

PDF

Council of Europe

Issue-paper from the Human Rights Commissioner

Council of Europe

An Issue Paper on the situation of itersex people in the 47 Member States, with recommendations from the Human Rights Commissioner of the Council of Europe.

PDF

Standing up...

Toolkit from OII Europe and ILGA Europe

Standing up for the human rights of intersex people

The toolkit developed by OII Europe and ILGA Europe for those who want to start the conversation with intersex people.

PDF

99. Where do I find more information?

NNID, Netherlands organization for sex diversity

NNID is an intersex led human rights organization working towards the rights and equality of intersex people, and promoting the visibility and acceptance of intersex variations and the broad spectrum that is biological sex.

Websites:
www.thisisintersex.org. A general international informative website on intersex, which is broadly focused on the topic of intersex and the diverse biological spectrum that is sex.

www.intersexrights.org. This is an online database that provides an overview of the recommendations and rulings of the UN treaty bodies on intersex matters. In addition, resolutions from the Council of Europe and the European Parliament and statements of intersex organizations that led to these are also included on this website. The database makes it convenient for scientists, students, intersex activists, policymakers and other interested parties to carry out valuable research on intersex matters, by making information in this field easily accessible.

OII Europe

OII Europe is the umbrella organization of European human rights-based intersex organizations, and works towards the protection and full implementation of intersex people’s human rights in Europe.
Website: oiieurope.org

Factsheet United Nations

Recommendations for member states on legal protection and equal treatment of intersex people.
PDF: bit.ly/UN-FE-intersex

Intersex rights in the European Union

The EU Fundamental Rights Agency (FRA) published a short report in 2015 on the situation of intersex people in the 28 countries of the European Union.
PDF: bit.ly/FRA-intersex

And more recently, the EU Fundamental Rights Agency (FRA) published their findings from a 2019 survey on LGBTI people in the EU and North Macedonia and Serbia. With almost 140,000 participants, it is the largest survey of its kind. It follows the agency’s first survey on LGBT people in the EU, conducted in 2012. The new survey results show little progress over the past seven years. Link: https://bit.ly/33XtJ4c 

Council of Europe

An issue paper about the situation of intersex people in all 47 member states, with recommendations from the Human Rights Commissioner of the Council of Europe.
PDF: rm.coe.int/16806da5d4

Standing up for the human rights of intersex people

Toolkit developed by OII Europe and ILGA Europe for those who want to start the conversation with intersex people.
PDF: bit.ly/standingup-en

[Edit: 05/2021]

Separator: start positie

References

Separator: start positie

Beeld: istockphoto.com/wildpixel