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Being openly intersex

People often wonder why intersex people are not visible in society. The simple answer is ‘because of stigma and secrecy’. In order to increase the visibility of people with intersex variations, it is important to know how people in general deal with stigma. It is, however, also important to know the ultimate goal of ending stigma and secrecy. This article starts with a theoretical explanation of why intersex people are not visible in society and then addresses the question of what still stands in the way of a ‘coming out’ or being openly intersex.

CONTENT

Invisibility as a strategy

Although for most people, their intersex variation is not their only identity (if such a thing exists at all), it is part of what the English social psychologist Henri Tajfel defines as ‘social identity’.¹ For the visibility of intersex people in society it is not only about belonging to groups, but also about not belonging to a group. What is often called a ‘coming out’ – telling others that you are ‘different’ – also means that the social identity changes: the one who comes out leaves a group and becomes part of another group. But the groups involved are more complex than people who have had ‘no coming out’ or did have a ‘coming out’.

American sociologist-anthropologist Richard Troiden described the phases of the development of a homosexual identity in 1988. Five ‘stigma management strategies’ play a role: capitulation, minstrelization, passing, group alignment and commitment (Troiden 1988).²

These three strategies correspond in part to what Troiden describes, but Troiden seems to be more in line here with what happens in practice during a coming-out.These strategies can be translated into the strategies that are used when it comes to being intersex. The users of these strategies form distinct social groups:

Capitulation – ignoring your intersex variation because you have an internalized stigmatizing view of it.³
Minstrelization – this involves experiencing your intersex variation in the highly stereotypical way that popular culture dictates. The differences between the stigmatized and the dominant group are deliberately exaggerated. Gender-bending can be an expression of this strategy, but it can also involve discussing the consequences of medical treatment in a harsh, satirical tone.⁴ This does not necessarily mean that the person using this strategy is actually openly intersex.
Passing – behaving like someone who is not intersex is probably the most common stigma-evading technique. People who choose ‘passing’ are aware of the fact that they are intersex, but present themselves to colleagues, friends and sometimes even family as ‘typical’ men or women. They lead a double life in which they only share their experiences in an environment where intersex variations are discussable (e.g. close family, hospitals, patient organizations, support groups on the internet) and never in an environment where it is considered not to be discussable (e.g. work, circle of friends, sports organizations).⁵
Group alignment – this strategy is mainly used by ‘newcomers’. People who have only recently found out that they are intersex are looking for the protection of, for example, a patient organization or a support group on the internet to talk about intersex. The feeling of belonging to a group alleviates the pain of the stigma, but outside this group, for example, the passing strategy is used.⁶
Commitment – Strictly speaking, this is not a way of avoiding stigma. It is acceptance. Commitment means that intersex variations are seen as an integral part of life. This has consequences for the person himself or herself, but also for his or her environment.

For the intersex person, entering the commitment phase means accepting that sex is a spectrum with infinite possibilities, rather than the binary ‘male’ and ‘female’. Where a person is on the sex spectrum does not necessarily relate to the position one places on the gender spectrum; intersex people often identify as either a man or a woman.

Arriving in the commitment or acceptance stage means that intersex variations can also become a part of the noticeable personal identity. There are relatively many examples of women with androgen insensitivity syndrome who have expressed their commitment through a tattoo of an orchid – a flower that owes its name to its resemblance to the male internal sex organs, the testes. But commitment can also have an impact in communication with others: the ‘coming out’.⁷

Currently, the majority of intersex people use two main stigma evading strategies: capitulation and passing. This explains why one in 90 people, not an insignificant group, can seem invisible.

Unfortunately these forms of ignorance are not without consequences. Although people who use a stigma-dodging strategy expect to benefit from it, it turns out the opposite is true – they feel less involved with others, often have to deal with exclusion and their environment notices that they are withholding something (Newheiser 2014).

It is therefore necessary to work towards a society in which intersex people can freely tell others about their feelings and experiences.

Position in society

Intersex people are mostly invisible in society. At first glance, this is a choice they have made for themselves – by choosing a stigma-avoiding strategy. The real cause lies in the reason for the stigma. The short explanation is that for a long time, and sometimes to this day (dependent on the country and the medical policies in hospitals), doctors advise people not to talk about their diagnosis with anyone. Froukje Slijper, a psychologist who was closely involved in medical treatments at the time of the ‘Vinger aan de Pols’-broadcast about intersex variations that is discussed later on this page, afterwards wrote, “For us as therapists, it is also instructive to see the importance of talking openly about this and how your social environment may react. For AISNederland (ed.: a Dutch patient group) it is useful to draw up a policy regarding openness on the basis of this experience.” (Van der Have 2004). The stigma avoiding strategies were part of the treatment plan for intersex people, so to speak.

The fact that doctors supported stigma avoiding strategies can be traced back to research (which was later refuted) by New Zealand psychologist John Money.⁸ But Money’s research is not an explanation of why intersex people are stigmatized – at most, the case study proves that doctors perceive the stigma as so severe that they are willing to take drastic measures. Although cosmetic surgery continues to be performed at a very young age, no research since Money’s has been published that shows that performing surgery at a very young age reduces stigma or improves the position of intersex people in society.

In the Netherlands, talking about intersex variations was almost completely taboo and lead to social exclusion until 2003. The taboo was so extreme that it was often not even discussed within one’s own family. Moreover, many people did not know that they were intersex because their doctor would not tell them their true diagnosis. Patients who asked their doctors if contact with fellow intersex people was possible were told that their diagnosis was so rare that such fellow intersex people did not exist and if they did, they would not want to talk about it (Van der Have 2015). This policy resulted in intersex people being completely excluded from the rest of society.

Nevertheless, intersex people could ultimately still find each other through the rise of the internet (Van der Have 2015), through organizations such as Intersex Society of Northern America (ISNA)⁹ and Bodies Like Ours. The purpose of websites like Bodies Like Ours has been taken over by a large number of pages and groups on Facebook. Most of these groups are closed and secret (invisible to non-members and only accessible after an invitation) or private (visible to everyone and only accessible after approval by an administrator).

The establishment of patient groups for intersex people resulted in people meeting each other as well. For people who are members of a patient group, the taboo is disappearing within the group itself, but even now there is still segregation: the activities of patient groups are often invisible to the rest of society. At most, integration is slowly but surely starting to take place as a number of patient groups (but their members not so much) become more visible in society.

Integration or inclusion

International intersex organizations often focus on the inclusion of intersex people in society. This requires a different approach than the integration and the difference lies mainly in the ‘direction’ of policy development:

When an individual is integrated, it means the person adapts in order to function in society, while inclusion means society adapts so that the person can remain himself/herself/theirself (Thomazet 2009). These two processes lead to a completely different result: integration means the group that integrates remains ‘seperate’ within society; while inclusion means the members of a group can participate independently in society without denying or hiding themselves.

Uitsluiting segregatie integratie inclusie – en – 1000px

Intersex currently finds itself between segregation and integration: sone intersex people and peer support groups have become partially visible in society and intersex organizations that deal with intersex human rights and the promotion of intersex people are established. The risk of integration is that the group remains ‘separate’ from other people in society.

Coming out and stigma

Telling people that you have an intersex variation is a coming out that can be compared to the coming out of LGBT people (Preves 2003; Preves 2004) or of someone who has (had) a mental illness (Corrigan 2003) or a physical disability¹⁰ (Gill 1997). In such situations, you can count on a mainly positive response from your surroundings. There may also be some less pleasant responses. In the case of intersex variations, these negative reactions can be seen as a direct consequence of medicalization, the taboo, the invisibility, and the associated stigmatization.

Exclusion

Research by the Netherlands Institute for Social Research shows that a small majority of people (53%) find it important when meeting someone to know whether this person is a man or a woman. If this is not clear, 18% would rather have no contact with that person. Almost 3 in 10 people believe that there is something wrong with people who do not feel like a man or a woman (Kuyper 2015). ¹¹.

Whether this ‘prefer not to associate’ results in actual discrimination of intersex people is difficult to determine. It is even unclear whether intersex people are implicitly protected by the existing legal framework within the EU for anti-discrimination, which is based on a strict male/female dichotomy (European Commission 2012). ¹² That means that the discrimination must be specifically directed against someone for being a man or a woman. But what is the legal status of the intersex individual who is excluded from sports competitions because of a testosterone level that is too high? And how does a naturally high testosterone level relate to other perceived advantages, like having long legs? Both are advantages the athlete cannot influence. In the regularly recurring discussion about sports and intersex variations, it appears again and again that intersex variations are significantly more common among top female athletes than among the general population.¹³Due to the lack of mention of intersex variations in legislation, the protection of intersex people against discrimination is now dependent on scarce (or completely absent) case law.

Medical issue or social issue?

Even if there is no discrimination, it should be taken into account that people do not know how to react to the revealing of a secret (Kelly 1996). But keeping your story a secret may also be extremely difficult, especially since intersex people often experience more psychological problems than other people (Bosinski 2005; Richter-Appelt 2006; Schweizer 2009; Schützmann 2009; Springer 2011). Cohen-Kettenis and Pfäfflin list twelve possible causes for this, which, incidentally, do not always apply, and do not apply to every intersex variation (Cohen-Kettenis 2003):

Need for (genital) surgery
Need for medication
Learning difficulties (language)
Social issues (due to sub-assertiveness, inappropriate social skills, or cross-gender role behaviour)
Premature or delayed puberty
Extremely short or tall physique. (Many women with Turner syndrome say they are bullied because of their height. The fact that this problem is also reported by short people who do not have Turner syndrome is an indication that this is a social issue rather than a clinical one (Sutton 2005))
Absence of menstruation
Need for feminizing or masculinizing hormones
Need for non-surgical treatment of the genitalia (e.g. vaginal dilation)
Infertility
Need for technical aid to engage in sexual contact
Sex reassignment surgery ¹⁴

Most of these causes stem from norms that exist in society. Not being able to comply with these norms results in stigma (Goffman 1963; Lee 2006) and feelings of shame (Preves 2003). The shame of not meeting these standards is also a reason why many intersex people do not come out (Aragón 2006).

Byrne does not take the causes of stigma as a starting point, but mentions the experiences that are associated with stigma:

Shame
Guilt
Secrecy
The role of “the black sheep of the family”
Isolation
Social exclusion
Stereotypes
Discrimination (Byrne 2000)

The experiences mentioned by Byrne cannot be linked one-on-one to the causes mentioned by Cohen-Kettenis and Pfäfflin.¹⁵

These experiences are recognizable to many intersex people – hence the mission statement of the Intersex Society of North America:

The Intersex Society of North America (ISNA) is devoted to systemic change to end shame, secrecy, and unwanted genital surgeries for people born with an anatomy that someone decided is not standard for male or female. (Intersex Society of North America n.d.)

Openness

Analogous to the coming-out of LGBT people, openness about being intersex to family members, friends and acquaintances seems like a good step. From the many published stories of intersex people on the internet and in magazines, it appears that there is also a desire to come out. Many studies show that coming out leads to less anger, less depression and better self-image among LGBT people (Legate 2012). However, doctors and other medical practitioners still wonder whether sharing information about having an intersex variation has positive or negative consequences for a child, and state that advice about this depends mainly on the personal ideas of the doctor (Sandberg 2012; Hughes 2007). For example, Sandberg, et al:

It is still an open question whether sharing information about the DSD with the wider social environment will have positive or negative consequences for the child. Living a “normal” life with a secret could be harmful, just like living a life without secrets but with an increased risk of stigmatization or rejection. The advice currently given to parents remains largely based on clinicians’ personal opinions on what would be preferable, considering their evaluation of the family, the child, and their wider social and cultural context (Sandberg 2012).

This negative attitude has two possible consequences:

Research by Ryan et al. (2015)¹⁶ shows that negative responses to a coming out of LGB individuals result in feelings of depression and lower self esteem (Ryan 2015). It is not known if this also applies to intersex people, but intersex people definitely already experience pressure because of doctors and their environment to stay ‘in the closet’, so it is likely negative responses would also negatively affect intersex people.
Ahrens’ research shows that negative responses to the sharing of sensitive personal information lead to forced silence. She describes three possible routes that victims of rape take ¹⁷ to not share their story with others: 1) negative responses from professionals make victims doubt whether further sharing of their story is useful, 2) negative responses from friends and family reinforce the feeling of have oneself to blame, and 3) negative responses from both sources reinforce the uncertainty about whether their experiences qualify as rape (Ahrens 2006).

A recent study states that coming out is less successful in an environment that is beyond your control (Legate 2012). The example given is the ‘Don’t ask, don’t tell’ policy that the US Army enacted from 1993 to 2010. Soldiers were not asked what their sexual orientation was, but soldiers who were revealed to be gay, lesbian or bisexual were discharged ¹⁸.

This is of course also one of the better examples of why visibility is necessary; if really nobody had told anyone anything (and nobody had filed a lawsuit afterwards), the ‘Don’t ask, don’t tell’ policy would still be in effect today. Visibility is also important for the promotion of intersex rights.

In a video¹⁹ Margriet van Heesch says the following about this:

The most important thing I learned from listening to the life stories of intersex people, and there have been forty of them in total, is that there is nothing gained from having a secret. Absolutely nothing at all. And as difficult and scary it may be to tell a secret, to overcome your fear, the fear that people will run away with your story, that they may misunderstand it, that they may pass it on incorrectly, that people will gossip about it… all this is less terrible than having to keep a secret (Van Heesch 2012).

Secrecy and openness

In 2003, three members of AISNederland (a Dutch patient group, now called DSD Nederland) shared their intersex experiences in the tv show ‘Vinger aan de Pols’ (Dutch TV program). This was the first time that intersex was extensively shown on Dutch television. Both Miriam and Vincenza had had frankly negative experiences disclosing their intersex variations in their personal life. Miriam worked for a fast-growing automation company. When she told the man who had scouted her she was intersex, her contract was not renewed, despite the fact that she had been promised a renewal shortly before. Vincenza told her story to someone she trusted. But at school the story spread and eventually Vincenza was ignored by her classmates (Medical Multi Media/AVRO 2003; Vinger Aan de Pols press release 2003).

The three women who were interviewed in ‘Vinger aan de Pols’ received only positive reactions after the broadcast (Diny 2004; Van der Have 2004). Nienke wrote on the website of AISNederland (now DSD Nederland):

Even in class, people were constantly complimenting me, from teachers to students. I walked around with a big smile on my face the whole day. I couldn’t believe it! The adrenaline was flowing through my body: I WAS FREE! I could be myself from now on! What a wonderful feeling that was… and still is (Barends 2004).

It seems that secrecy creates opportunities for gossip and that openness results in acceptance.

The program ‘Vinger aan de Pols’ also made it clear to health care practitioners that openness is important. Psychologist Froukje Slijper wrote:

For us as therapists, it is also instructive to hear how important it is to be able to talk openly about your form of intersex and what the reaction of those around you can be. Based on this experience, AISNederland (Dutch patient group) should draw up a policy on openness (Van der Have 2004).

The fact that practitioners could learn something from a television program says something about the lack of equivalent communication at the time. Between 2003 and 2013, communication has improved considerably. Nowadays, therapists and patients often work closely together in intersex patient groups. Nevertheless, coming out can still be very difficult, and is still an important issue to speak on. Firstly, (medical) treatments are still a subject of debate. The United Nations, the Council of Europe and the European Parliament have all expressed well-founded criticism and called for a legal ban on unnecessary medical treatments that violate human rights. And secondly, secrecy did not end abruptly in December 2003. Many people under the age of 18 – who are legally children – were also raised without being involved in important decisions about their bodies. Thirdly, ending secrecy is not the same as removing stigma. Stigma stands in the way of real openness. Stigma stands in the way of coming out. To change that, society has to change. Intersex people, their parents and doctors can only contribute to this if they accept that intersex is not a disease.

Tips for more openness

A tip for everyone

It should be possible to tell people you have some form of intersex variation without fearing the supposed negative consequences, but it should not be an obligation. You must be able to decide for yourself who you come out to and who you do not come out to.

Two tips for governments

An equal treatment act or law that protects intersex people against possible negative consequences of coming out because of discrimination on the basis of expressed gender identity and sex characteristics would help. The explicit protection of these elements would make it easier to report discrimination. It is still unknown if such a law also offers protection in practice. Therefore, the government should communicate widely that discrimination of intersex people is prohibited.
Government policies should be geared towards inclusion. Only inclusion will lead to intersex people being visible in society.

A tip for health professionals

While society is responsible for the stigma, medical practitioners are responsible for maintaining that stigma when engaging in unnecessary medical interventions without the prior and free informed consent of the person in question, in order to make intersex people appear more ‘male’ or ‘female’.

Tips for a coming out

Procastination makes it harder
A secret requires at least two people. If you wait a long time before coming out, your best friends might say ‘why didn’t you tell us earlier?’ They probably mean that they would have liked to support you much earlier. The longer you wait to come out, the longer the secret remains between you and your friends. And that makes it harder to share your story with people you have known for a long time.
It really works… mostly
People who have spoken publicly about their intersex experiences often say they were surprised that everyone responded positively. Many people experience it as a relief that there is no longer a ‘secret’ that can come out one way or another. People also often feel as if the ‘secret’ stood in the way of friendships. Still, people sometimes react negatively, by staying silent, which harms the friendship. You can of course ask yourself whether such a person was a real friend in the first place. If you have doubts, it is best to talk to people who are already ‘out’. They will confirm to you that the positive effects of openness outweigh any negative reactions or ‘friendships’ that are may end because of your coming out.
Tell your own story
It is your story, someone else cannot advise you on how to tell it. This applies to your family and your friends, but also to professionals whom you ask for help.
Seek contact with other intersex people
Why reinvent the wheel? There are people who have gone through similar experiences and know how you feel. They can help you.
Plan your coming out
Of course, there are those unplanned moments that are perfect for a coming out. You just feel that this is the right moment to tell your story. But such moments are rare. In the vast majority of cases, you will need to plan your coming out. It is best not to do this with an official announcement two weeks in advance – at the very least, your friends will think you are announcing an engagement. Planning a coming out means making sure you have enough time to tell your story, answer some questions and then have a chat. It can be useful to have some written information on hand for people who want to know more about intersex variations. That written information should preferably be about intersex variations and not about you personally. It may also be wise to have someone around you can seek support from afterwards – a coming out can be mentally taxing.
Less scary than you think
Chances are that you will be anxious to come out. Understandably so, because for you coming out is one of the most important days of your life; it is a day you will often think back on later. But for someone else, it is just another Tuesday (or whatever day you choose). Of course, people will be happy to listen to you, but they don’t experience the excitement that you do. So try to relax – it’s just another Tuesday.
Practice and start small – your story will become shorter
A coming out is a bit like a presentation. In a limited amount of time, you try to get your message across to other people in the best possible way. Only if you succeed at this will the people with whom you share your story understand why your coming out is so important to you. Before you share with ‘the whole world’ what it means to be intersex, it is best to start with a small group of people you trust completely. After ‘practising’ like this a few times, you will notice your story getting shorter and shorter. Events that are important to you, but that other people cannot relate to, will be skipped.
Set your boundaries
By practising with good friends, you will find out what you do and do not want to share. Also decide with whom you want to share it. It is often very difficult not to answer questions that push or break those boundaries, especially if the question is asked by someone with whom you have a very good relationship. But even in such a situation, you can say that you do not (yet) want to talk about certain subjects. It may help if you explain that you still need to think about some things yourself or that you have not yet found the right words to tell that part of your story.
Your first coming out will not be your last
After your first coming-out, many will follow. Each time you meet new people, you will tell your story again. But it will be a story that becomes shorter and shorter, contains less and less emotion, and will be told more and more efficiently. The shortest coming-out text I sometimes use is, ‘Hello, my name is Miriam, I have AIS, you can read more about it on the internet’.
Don’t feed the trolls
In general, it is best to limit your coming out to announcing that you are intersex and answering a few questions. Don’t let yourself get dragged into a discussion. Outright negative responses are unlikely. Sometimes, however, you may be confronted with awkward jokes. Remember that a silly comment only says something about the person making it and nothing about you. Unless you really feel like it, it’s best not to argue with people who make nasty comments: don’t feed the trolls. (Another tip: even if you read the best article on intersex ever on the internet, don’t read the comments – many publications give the trolls free reign).
You are still you
At the end of a coming out, you can explain that you are still you – nothing has changed about you. You have only shared something the other person did not know. It may be good to show that your coming out is a sign of trust to the other person – you are telling your story because the other person has an important place in your life.

References

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[cm_footnotes]

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Beeld: istockphoto.com/aquatarkus

What is intersex? This is intersex!