Intersex is not DSD

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).

1. Scientific field

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.

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.

2. Experience or 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’.

3. Rainbow or black and white?

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.

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.

4. Rights or 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.

5. Equality or discrimination?

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.

6. Bodily diversity or not?

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.

7. Inclusion or 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.

8. Support or therapy?

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?

9. Bodily integrity or body ‘normalization’?

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.

10. Who decides?

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.

11. Quality and normality

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.

12. Society or 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.

13. Being who you are

14. Where does it take place?

15. (De)medicalization

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.