Image: iStockPhoto OleksiiK
10 questions and answers about intersex
1 in 90 people are born with a body that does not quite match the prevailing image of humans having either a male or a female body. This means the body has a slightly different structure, for example in terms of chromosomes, hormones or gonads. For example, an intersex person’s body may be seen by society as ‘typically female’, but have a chromosome pattern that is typically perceived as ‘male’. However, there are many more possibilities. There are least 8.24 million intersex people in Europe. Many identify as men or women and often present as such. Some intersex people identify as non-binary: they do not feel and/or express themselves as exclusively male or female. Because of the taboo and shame surrounding intersex, most intersex people are invisible.
This page tells you more about intersex and what you can do for intersex people, in a professional setting or as an ally.
1. What is intersex?
Intersex refers to the experiences of people who are born with a body that does not fit within the normative social construct of male and female. Intersex is not about sexual orientation or gender identity. Most intersex people have a male or female gender identity and are heterosexual. Naturally, intersex people can also be lesbian, gay, bi+ or transgender. 1More often than other people, intersex people question what it means to be a man or a woman. About 5% of them reject the assigned sex at birth – this usually happens before puberty (Falhammar 2018).
Intersex people have always existed, but are rarely visible in society. The norm is to divide humans into two distinct sexes. The norm for ‘male’ is XY chromosomes, penis, testes, testosterone and a certain physique. The standard for ‘female’ is XX chromosomes, vagina, ovaries and uterus, estrogen and a different physique. There are also expectations about what bodies should be able to do, such as procreation. Intersex people often meet most, but not all these expectations. Sometimes this means that the body can look different than people expect from a man or a woman. But intersex can also mean that internally the bodily characteristics are different than expected, for example on a hormonal or chromosomal level. Like all humans, intersex people come in all shapes and sizes. Anyone can find out that they are intersex at any time. Sometimes it is discovered at birth, or in puberty, for example when a girl does not get her period, but it can also become apparent much later.
Gradually societal ideas are changing about splitting humanity up into male and female. This gives intersex people the opportunity to be more open about themselves. However, most people have never heard of intersex, including some intersex people. Intersex is often incorrectly associated with the transgender spectrum. However, unlike trans people, many intersex people grow up with the gender they identify with in adulthood, but often they did not have a say in the medical treatments they underwent in childhood. For intersex people, the issue is not so much the perception of their own gender, but the shame and stigma resulting from the social taboo on intersex, which sometimes makes it difficult to connect with the rest of society (Van Lisdonk 2014).
‘Yesterday, I took my daughter to the ER for a head wound. The intake nurse asked me how it happened, and if she had ever been hospitalized and if she was seeing a specialist. It took me by surprise and before I knew, I told him she is intersex – I still have to learn how to go about it properly, because a nurse at that position has nothing to do with it. He looks at me with a puzzled expression: ‘Is that inbreeding? Was she raped? Incest?’
Mother of an intersex child in 2015
(source: Interview NNID for UN shadow report)
2. How many people are intersex?
Representatives of European intersex organizations gather in Athens. Image: Del LaGrace Volcano.
The answer to that question depends on the definition you use, but also on which research population you use. NNID uses a percentage from Danish research published in 2019, based on a large random sample, and uses the definition of the experience of having a body that does not fit within the normative societal construct of male or female. This study shows that 1.1% of people have an intersex variation. This means that there are approximately 8.24 million intersex people in Europe.
In 2019, 62.675 people in Denmark were asked “As a child, adolescent or adult, did you notice any variations in your genitals, chromosomes or hormones that make them not correspond to the characteristics typical of men or women?”. 1.3% of men and 0.9% of women indicated that their biological sex characteristics do not fit the common definitions of male or female. This means that 1.1% of people would fall under the definition of intersex.
Another estimate often quoted is 1.7% (Fausto-Sterling 2000). For Europe, this percentage amounts to approximately 12.73 million intersex people. In 2014, the Netherlands Institute for Social Research also conducted an exploratory study called ‘Living with intersex/DSD’. On the basis of this study, the institute estimated that 1 in 200 people (0.5%) have an intersex variation. The study looked at the numbers in medical-scientific publications for a limited number of diagnoses. It gives an impression of how many people have been given a specific diagnosis by doctors. It was clear from the outset that two important groups are missing from that percentage: a) people who are intersex but have never been seen by a doctor, and b) people who are intersex but have received a different diagnosis.
Sometimes, the figure of 1 in 4500 children is also mentioned, but this refers to the number of children who have undergone genital surgery (Thyen 2006) and is also based on a small, and therefore unreliable, research population.
3. Is intersex a medical issue?
The short answer is: no, it is a social issue. Society likes to think sex is not diverse and fits in two neat little boxes. To solve the problem with intersex people not neatly fitting in these boxes, intersex came to be treated as a medical issue.
The medical name for intersex variations is Disorders/Differences of Sex Development (DSD). The term was introduced by health workers to replace ‘intersex’ in 2006, because they considered the term intersex as potentially pejorative. At the time intersex people mostly met in patient support groups. Some groups accepted the new terminology, but changing the word ‘disorders’ to ‘differences’. Others rejected the term which led to an international intersex community and the intersex human rights movement.
Since the 1950s, it has been customary for intersex children to undergo medical treatment to make them conform to societal ideals of male or female. These treatments can include surgery, hormone therapy and psychological treatment to ‘guide’ the child’s gender identity to correspond with the medically assigned sex characteristics. Secrecy was an important part of this treatment. That secrecy was slowly eroded due to the rise of the internet, which allowed intersex people to find each other and connect. It varies per country if these medical treatments are still customary, and to what extent secrecy is still common.
The keyword in the intersex human rights movement is ‘depathologization’, meaning not thinking of intersex variations as a disease, but as a normal and natural part of biology. Nowadays, sex, like gender, is increasingly seen as a spectrum. Sex is not binary, but a spectrum with infinite variations. Each person has a unique set of (internal and external) bodily characteristics. There is great diversity among men, and great diversity among women. Additionally, there are also many people that do not fit into the existing ideas of male or female. Medical treatment to adjust the appearance of intersex children’s sex characteristics isn’t needed or desirable once it is accepted that everyone and every body is different.
Intersex people have been addressing concerns with the treatment of intersex children since the mid 1990s. Depathologization is a lengthy process. Unfortunately, unnecessary treatments still take place, without the consent of the intersex child themselves. Doctors still ‘normalize’ intersex people into male or female. Intersex organizations and groups advocate for the rights of intersex people and their bodily integrity, autonomy and right to self-determination. Simply put, it is your body and you have the right to decide what you do with your body. After all: intersex is not a disease, it doesn’t hurt to be intersex, it is not life-threatening and cannot be cured. They see a different role for healthcare. Instead of predicting the gender of a child and controlling the outcome through surgery, hormones and psychological treatment (predict & control), they want practitioners to collect the information the children need when they are old enough to make decisions for themselves (measure & react). It is precisely because of depathologization that more time and money remains available for necessary medical treatments.
Although intersex is not a medical issues, intersex people do need medical care, same as everyone. More information on intersex and healthcare can be found here.
The specialist said to me, ‘Intersex? Your child? No miss, that does not exist. Perhaps you should seek psychological help. There are people on the internet who say that you shouldn’t opt for surgery, but that is not true. He is a very healthy boy, his penis is completely hidden, a small surgery will fix it and there will be nothing to worry about.’
Mother of an intersex daughter in 2014
(source: Interview NNID for UN shadow report)
The terms intersex and DSD cover many different physical variations in sex characteristics. Some intersex people never undergo medical treatment. Others undergo medical treatments (whether necessary or not) from an early age, which may affect their physical and mental health for the rest of their lives. Some are unaware that they are intersex, either because they never found out, or because they were never told. Many intersex people are infertile, but not all, and not all infertile people are intersex. Although medical intervention cannot eliminate intersex variations, medical care is still necessary in some cases: additional medical issues such as osteoporosis, reduced fertility and certain forms of cancer require medical treatment.
Apart from the medical aspects, being intersex can also have a major impact on a person’s wellbeing. Sex characteristics, gender, external appearance and infertility can be sensitive issues. Intersex people often have to deal with ignorance and prejudice. For instance, intersex people interviewed by the Netherlands Institute for Social Research indicated that it is difficult to accept that you are intersex and to be open about it to others. Shame and fear of stigmatization play a role in this. As a result, some intersex people hide that they are intersex. It can often have an impact on relationships, the experience of sexuality, and sometimes on shaping the desire to have children and self-image as a man or woman. Contact with other intersex people can be important. In several countries this so-called peer-to-peer contact is usually organized through patient organizations.
International bodies, such as the UN, the Council of Europe and the European Commission, approach intersex from a human rights perspective. They condemn medical treatment of intersex children as a violation of human rights. This also applies to non-consensual unnecessary surgery, and hormone treatments. In many countries intersex people are still virtually invisible in both national and local policy. The discussion about this has only just started.
4. LGBT or LGBTI+?
Sexual orientation, gender identity and sex characteristics are not the same thing, but everyone has all three. They also all have to do with how society thinks about how we experience life and ourselves as men or women: do you fall in love with a man or a woman, do you identify as a man or a woman, do you have a female or a male body? Contrary to popular belief, there are no absolute definitions of men and women. People are not as simple as one might like. Lesbian, gay, bisexual, asexual, transgender, non-binary, queer, etc. people experience issues with societal ideas about men and women and how they are ‘supposed’ to act. Therefore, these groups can join forces. Intersex people also cannot conform to the prevailing normative definitions of men and women. And just like LGBT+ people, they too suffer from stigmatization, shame and sensitivities surrounding (self-)acceptance, relationships, sexuality and whether or not to have children.
It therefore seems logical to add the ‘I’. There are patterns and prejudices in some of the points mentioned above which they can combat together.
Panel on intersex at the IDAHOT Forum, an LGBTI conference where ministers, policymakers, experts, scientists, and representatives of civil society meet. Image: Miriam van der Have.
For intersex people, however, such an alliance is sensitive and certainly not self-evident (Van Lisdonk 2014 and Van Heesch 2015). For example, not everyone feels a shared identity or community based on intersex. Many do not see themselves as intersex, but as men and women with a secret or ‘medical condition’. Some intersex people are also LGBT+ and accept themselves as such, but do not yet dare to be open about being intersex. Most intersex people who are not part of the LGBT+ community admire the progress made in emancipation for LGBT+ rights. Yet, some fear that being intersex will be confused with, for instance, being homosexual or transgender. Intersex people therefore do not always feel a natural connection with LGB or T, and the same is true the other way around.
But even though there are big differences between the various groups within the LGBTI+ community, adding the ‘I’ can contribute to recognition and visibility. More information and attention for intersex variations can lead to promotion and understanding. But implementing intersex inclusive policy carelessly or incorrectly, without actually talking about the ‘I’, encourages marginalization and causes further problems. In short, it depends on the theme and the context whether LGBT or LGBTI+ is more appropriate. It is important for all organizations to make a conscious choice in this matter and to contact the relevant interest groups before adding the ‘I’.
Internationally, several LGBT organizations have become LGBTI+ organizations by developing inclusive intersex policies and working closely with the intersex community. The global umbrella organization for LGBTI organizations, ILGA World2ILGA World is the worldwide federation of 1501 national and local organizations in 152 countries that are committed to equal rights for LGBTI people. ILGA World has consultative status with the United Nations ECOSOC Council. ILGA World is based in Geneva, Switzerland., added the ‘I’ in 2008. ILGA World works together with intersex organizations on advocacy at e.g. the United Nations and the European Parliament. European youth organization IGLYO3With 95 member organizations in 40 countries, IGLYO is the largest LGBT network for young people and students. IGLYO is based in Brussels, Belgium. works together with intersex organization OII Europe 4Organization Intersex International Europe is the European network organization in which at the time of writing 29 European intersex organizations from 23 countries work together. OII Europe is based in Berlin, Germany. to develop courses for LGBT organizations who want to be intersex inclusive. The starting point is that the ‘I’ is only included if it is a meaningful addition.
People with an intersex variation can identify with the ‘L’, the ‘G’, the ‘B’ or the ‘T’ because they recognize the pain of being dehumanized. It is the need for promotion of their rights and social inclusion that they share with the LGBTQ+ movement.’
Miriam van der Have,
Executive director NNID in Dutch online journalism platform ‘De Correspondent’, july 21, 2016
International intersex organizations focus on intersex inclusion in society. This requires a different approach than integration. The difference is mainly in the direction in which the policy is developed. In integration, minorities adapt to function in society. In inclusion, society adapts to ensure all people can be themselves. These two types of policies lead to completely different results.
Intersex is currently at a stage between segregation and integration: patient support groups have become partially visible in society and an intersex human rights groups have been established to tackle equality and human rights. The risk of integration is that the group remains a separate group within society.
5. What is the situation of intersex people in Europe?
The experiences of intersex people are varied. Factors such as family, medical practices and age can result in specific experiences that are more or less common. Some families may be very accepting, and people may not experience any issues. In other cases, being born intersex results in childhood domestic abuse or child abandonment. Similarly, there are national differences in the problems intersex people can face. Embryo-selection through the use of pre-implantation diagnostics during in-vitro fertilization (IVF) to prevent the birth of intersex children is more common in some regions than in others. Similarly, advice and coercion to abort intersex embryo’s can occur but also varies per country.
Despite personal differences, there are clear similarities in the experiences of intersex people across Europe (and beyond).
Scientific research has shown that intersex persons experience social and psychosocial problems. Reported problems include: indirect and direct discrimination, school dropout, education, forming friendships, forming relationships, anxiety feelings, feelings of shame, loneliness, feeling different, low self-confidence, lack of assertiveness, sexuality, sexual well-being, gender identity, work eligibility, depression, aggressiveness, self-mutilation, and suicidal thoughts.
It is often assumed intersex people experience fewer issues than lesbian, gay, bisexual or transgender Europeans. Special Eurobarometer 493 has shown that 53% and 48% of Europeans believe that discrimination based on sexual orientation or being transgender is widespread, respectively. 39% believe discrimination is widespread based on being intersex. When we look at how common discrimination is, it turns out that sexual orientation is more accepted than being intersex or transgender. More Europeans indicated feeling comfortable with having a lesbian, gay or bisexual person as a colleague or highest elected official, then was the case for intersex and transgender people. Especially noteworthy is that 55% of Europeans say they would feel comfortable with their children being in a relationship with a person of the same sex or gender. That acceptance rate drops to 44% for intersex and 43% for transgender. At the same time, those results say nothing about the sexual orientation of these people’s children.
More about intersex in Europe:
Dan Christian Ghattas, OII Europe Allies Toolkit – Standing up for the human rights of intersex people – how can you help? (available in 10 European languages)
Silvan Agius, Council of Europe Issue Paper – Human rights and intersex people
‘My parents never dared to say anything. My siblings were never allowed to know anything. The neighbors were certainly not allowed to know. But gay people appear on TV and get married, it’s all possible. So actually I think I’m also allowed to tell those around me. That makes a lot of sense to me. And I also don’t think I should be ashamed at all.’
From: Van Heesch (2015),
Life story interview Maria (p. 203)
6. Why are intersex people invisible?
You generally can’t just tell whether someone is intersex. Sometimes their external sex characteristics develop differently from the norm, but chromosomal and hormonal variations are more common. These can lead to an appearance that differs from the norm, but this is by no means always the case.
Intersex people are invisible in another way as well. There is a social taboo on bodies that do not conform to the prevailing norm. Doctors explicitly advised their patients against saying anything about it to others. Throughout Europe, the forced secrecy has gradually been eroding since the early 2000s. However, it is often still recommended to be very careful about speaking openly about your intersex variation. This is done to protect intersex people from rejection and misunderstanding. However, it also leads to social isolation. Before the 2000s, parents were often dissuaded from telling their child about their intersex diagnosis. In the 20th century, it was not uncommon for parents to not even be told that their child was intersex or what medical and surgical treatment they received. For instance, the parents were told that their child had cancer and that surgery was necessary. While these types of surgeries are still performed today, generally the parents are informed about the reason. Yet there is still a large group of adults in Europe who do not know why they received medical treatment as children. Or they do know by now, but suffer a lot from shame and stigma. Invisibility breeds more invisibility, as it is difficult for intersex people to speak out when they know most people won’t understand them.
Of course, no one is obligated to be open about being intersex. Everyone is allowed to make their own decisions about whether or not to speak openly about it. However, it is highly inappropriate to speak about someone being intersex without their permission. As with the unintentional ‘coming out’ or ‘outing’ LGBT people, this can have far-reaching consequences for that person.
Because of the invisibility, stigma and taboo, there are many adults, adolescents and children who do not dare to be open out of shame and fear of reactions from their surroundings. The stress about whether or not to tell others that you are intersex can cause problems that result in bullying or exclusion. This stress is also seen in LGBT people and is called minority stress: the extra stress people experience because of their minority status. It is stress due to (fear of) negative reactions, hiding your otherness, internalized negativity about your own body and/or the lack of social support. Gay and bisexual people who experience a lot of minority stress have poorer mental health, research shows. This could also be true for intersex people. For professionals it is therefore important to watch for (symptoms of) minority stress.
7. Are intersex people sufficiently protected by law?
Currently, most European countries do not have legislation to prohibit non-consensual unnecessary medical treatments on intersex children. Some countries have included intersex people in anti-discrimination legation. The United Nations, the Parliamentary Assembly of the Council of Europe and the European Parliament call for a ban on such procedures. Intersex organizations want for the laws created to combat Female Genital Mutilation (FGM) to also apply to Intersex Genital Mutilation, including the right to report in adulthood, in line with their country’s laws.
8. What can the authorities do?
To protect the rights of intersex people and guarantee their equality authorities play an important role on all levels.
International and regional bodies
The rights of intersex people are protected by international legislation, for instance by the treaties of the United Nations, which take precedence over national legislation. Over the past decade the United Nations has supported intersex rights by raising awareness and giving recommendations to national states to undertake legislative, administrative and policy efforts to eliminate discrimination and protect intersex people against human rights violations. The European Union has also been a supporter of intersex rights through raising awareness, commissioning research into the treatment and lives of intersex people in Europe, and issuing resolutions.
Find out more about the work of the United Nations and in European Politics.
National governments
National governments are responsible for ensuring that legislation is in line with the international treaties that the government has signed. This includes anti-discrimination legislation that also protects the rights of intersex people. Additionally, national (or sometimes also local) governments oversee health laws, gender registration, the content of education for children, youth and social and health professionals. These are also policy area’s where national governments can ensure the inclusion of intersex people.
Local governments
Local governments may be also be partially responsible for gender registration of infants, education and social professionals such as youth workers. Raising awareness on intersex and the issues intersex people face can really help making it easier for them to interact with local governments.
Some tips to include intersex in local policy:
- Consult with interest groups of intersex people. Ask them to participate in local platforms, councils and consultations.
- Stimulate the discussability of the subject, also within your own organization. Do this in cooperation with LGBTI and intersex organizations. Be alert to the fact that there may be shame and fear of openness. Also bring the subject to the attention of professionals and volunteers in care and welfare. Make it clear where people with complaints and questions about discrimination can go.
- Support the organizations of intersex persons in a similar way as other interest groups, financially or otherwise. Make it clear that these groups and organizations can appeal for municipal support.
For more information, visit Intersex Inclusive Policy.
9. What can social professionals do?
- Urge the inclusion of information about intersex variations in the curricula of health and welfare education institutions, so that (future) professionals are better prepared for its consequences.
- Ensure the promotion of expertise through training or E-learning. In this way, professionals can gain knowledge, learn to recognize signals and gain familiarity with the theme. For example, practice with cases and discuss signals during peer or team meetings.
The elderly
Intersex genital mutilation combined with strictly enforced secrecy was commonplace in the past. As a result there is a large group of intersex older people with a medical history of genital surgeries. Many of them have suffered from shame and stigma throughout their lives. This requires special attention when they become dependent on care later in life.
Youth
A study by Emmen showed that among 421 youth workers, none had ever met a young intersex person (2014). As at least 1 in 90 people is born intersex, it must be concluded that this group is often overlooked.
Tips for professionals in healthcare and welfare:
- Assume that there are intersex people among your clients. Bear in mind that they often do not (dare to) talk about their medical history. They may have (had) to deal with shame, lack of understanding, discrimination or loss of social contact throughout their lives in connection with the fact that they are intersex.
- Keep in mind that intersex individuals do not always (want to) discuss the topic themselves.
- Refer people who desire contact with other intersex people to relevant organizations. These can be patient groups or an organization like OII Europe. An overview of these organizations can be found on this website.
More than nine in ten professionals (91%) do not know enough about intersex youth to be able to counsel them. More than seven in ten professionals (73%) want to learn more about intersex youth.
From: Movisie research ‘Jong & Anders. Onderzoek naar aandacht voor lesbische, homo- en bi-jongeren, transgenderjongeren en jongeren met een intersekseconditie (lhbti) in jeugdwelzijn, jeugdzorg en jeugd-(L)VB’ [Translation: ‘Young & Different. Research on attention to lesbian, gay, bisexual, transgender and intersex (LGBTI) youth in youth welfare, youth care and youth (L)VB’](2014).
10. Where do I find more information?
Intersex rights EU
Focus-paper from the EU Fundamental Rights Agency10. Where do I find more information?
NNID, Nederlandse organisatie voor seksediversiteit
NNID is an intersex led human rights organization working for the rights and equality of intersex people, and promoting the visibility and acceptance of intersex variations and the broad spectrum that is biological sex. Our main international website is www.thisisintersex.org, which is broadly focused on the topic of intersex and sex diversity.
We also publish the website 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 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. The organization advocates for intersex matters by working towards the protection and full implementation of intersex people’s human rights in Europe.
Website: www.oiieurope.org
Fact sheet 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 28 Member States in the European Union. PDF: bit.ly/FRA-intersex
More recently, in 2020, the FRA published a report on the results of 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/3wlAmtj, PDF: https://bit.ly/3ooDvpm
Council of Europe
An Issue Paper on the situation of intersex people in 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
References
Image: istockphoto.com/belchonock