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Policy areas for intersex

Sex diversity, by which we refer to the diverse spectrum that is biological sex, should have just as important a role in policy as sexual diversity and gender diversity. Diversity is rarely included in policy because a majority demands it. It is the marginalized groups who demand diversity policies. Not because they demand something extra for themselves, but because they notice that otherwise they will not have the same rights as the majority.


The quest for diversity is a struggle for empowerment by a marginalized group that is excluded by a majority group. Gay men, lesbian women and bisexual people work on sexual diversity. Women, transgender people and non-binary people work on gender diversity. And in the same way, intersex people work on sex diversity. Diversity creates an inclusive society, a society in which everyone can be themselves. But precisely because diversity is pursued by marginalized groups, the pursuit of diversity should be part of different policy areas.

This article discusses the policy areas in which sex diversity in general and intersex in particular deserve attention.


In the public debate, it sometimes seems as if the intersex community has only one goal: to end the unnecessary medical treatments carried out on intersex children without their personal fully informed free consent. However, this is not the finish line, but a starting point. From there, intersex must become visible in all kinds of policy areas. The goal is that intersex people can be visible everywhere in society and that society also takes these people into account. However, intersex people are not asking for special treatment; they just want to have the same rights as other people.

Because intersex has a high degree of intersectionality with other social topics, the subject should be included in quite a few policy areas. Unfortunately, practice shows that this is hardly the case. Often, specific intersex-oriented policies are lacking because the supporting data is thought to be absent. But even if this is true, it would already help a lot if policy documents would state in a single paragraph that intersex-focused policies are necessary, but that more social-scientific research is needed to determine which policies are effective.

Internationally, the ‘i’ of intersex has been added to LGBT since 2008. Several European governments have since included intersex in policy on a national level. Regional and local governments often talk about LGBTI, but have not yet developed policies on intersex. As a result, intersex is often excluded from the positive effects of LGBT policy. Cooperation of LGB, T and I is possible because all three groups have to deal with not fitting the normative social construct of man or woman. The normative definition assumes people are heterosexual, cis (so not trans), and strictly male or female. A frequently heard argument for not expanding LGBT policy to include intersex is the invisibility of intersex people. However, this perpetuates a vicious circle: 1) no young intersex people are visible, 2) so the ‘i’ is not added, so no intersex people come out, 3) so… go to step 2). By developing LGBTI policy and ensuring choosing to be visible as an intersex person is safe and accepted, more intersex people will become visible.

A non-negligible group of intersex people have a medical history of genital surgeries and other medical treatments. For many of them, this has led to feelings of shame and stigma. This requires special attention when they need care later in life. For example, it can be more stressful and uncomfortable for them to receive assistance with bathing and in the process showing their naked body. This can lead to emotional problems.

The empowerment of intersex people cannot be seen separately from the empowerment of women and the empowerment of LGBT people because all these groups have to deal with the consequences of the sex and gender dichotomy and heteronormativity.

All groups affected by intersex issues (children and adult intersex people, parents, and also doctors) experience pressure from society to conform to the sex dichotomy – the idea that sex consists of two seperate sexes, male and female (Crissman 2011, Wisniewski 2012, Fedele 2010, Sanders 2012, Dayner 2004). Stereotypes about the roles of women and men contribute significantly to this pressure.

Intersex can therefore be a policy issue in its own right, but can also be visible in empowerment or promotion of rights policies for other groups where the sex/gender distinction plays a role.

The level of societal acceptance for intersex people varies within and outside of Europe. It is often even more difficult to speak openly about sex diversity or intersex for people who have a conservative regional, religious or other cultural background. Feelings of shame and stigmatization are more difficult to overcome when these are rooted in their background.

Due to the broad definition used by the World Health Organization WHO, intersex variations can also be considered a disability.1For more information see this statement of Organization Intersex International Europe

The UN CRPD Committee assumes that the non-consensual medical treatment of intersex children results in a disability.

Women with naturally high testosterone levels are excluded from elite sports. They are only allowed back after undergoing medical treatment to lower testosterone levels(de Visser 2013). In women with XY chromosomes, the testosterone-producing gonads were often removed for this purpose.  After this, the testosterone levels are lower than in other women, but the athletes must continue to take hormone pills for the rest of their lives to prevent osteoporosis and other health problems.(Fenichel 2013) From both a human rights perspective and a sports perspective, the mandatory medical treatment is problematic(Sánchez 2013, Bermon 2014, Ferguson-Smith 2014, Karkazis 2012 ).

National government can commit to prohibiting sex diversity as a ground for exclusion in recreational sports. At a lower policy level, it is important that showers and changing rooms provide privacy.

Discussions are taking place in several European countries on whether sex or gender registration by the government is necessary. It will be some time before these conversations will lead to changes in policy. Naturally, organizations do not need to wait for the government to decide. They can already consider whether it is really necessary to ask for sex or gender on any form.

The position of NNID is that:

  • On the basis of the most probable future experience of the child, a gender should be assumed for each child at birth, however, without non-consensual unnecessary medical, surgical and psychological treatments to steer the childs’ gender development;
  • presuming a gender is a solely administrative act, that does not imply that with this registration the real gender of the child is determined (and therefore may not be medically assigned);
  • changing sex or gender registration should be as easy as possible for all, regardless of age, and
  • legal sex or gender registration by the government should be completely abolished as soon as possible.

Intersex people face serious human rights violations in education, including bullying(CESCR 2009).

In primary and secondary education, intersex is generally not addressed (Bron 2014). Attention to intersex is also virtually absent from training for physicians, nurses and psychologists(Brennan 2012).

Sex diversity should be addressed at all levels of primary and secondary education appropriate to the age of the child. Higher education should address the social consequences of sex diversity without medicalizing the issue.

Intersex people may be bullied in the workplace (CESCR 2009), for example for their appearance. For instance, they may experience bullying for their height, facial hair or lack thereof, or for having ‘a short fuse’ resulting from hormone treatment. However, even intersex people who do not have external signs of being intersex may also be prey to bullies because of their traumatic experiences. Both telling and not telling others about intersex can create problems that result in bullying or exclusion(Santuzzi 2014).

In his May 2016 report the UN Special Rapporteur on Health said that partial clitoridectomy is a form of Female Genital Mutilation(Pūras 2016).

Multiple international organizations have called on governments to end forced normalizing surgery on the genitals and other non-consensual medical treatments. For instance: The United Nations Human Rights Council Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment (Méndez 2013), the Council of Europe Commissioner for Human Rights, the European Parliament (Agius 2015), and the European Union Agency for Fundamental Rights (FRA) (European Union Agency for Fundamental Rights 2015).

Recent research has shown that substances in paints/solvents, pesticides, cosmetics and industrial chemicals can disrupt endocrine function and thus cause some of the ways in which people can be born with bodies that do not fit the societal definition of male or female (Gaspari 2011, Kalfa 2011, Kalfa 2015). Pregnant women may come into contact with these ‘endocrine-disrupting chemicals’ (EDCs) during their work, but the substances also enter the environment as pollution. EDCs in surface water have been found to be a major cause of intersex in fish.

Paginaversiering: een papierenrietje

Policy & Human Rights

Policy on sex diversity in general and intersex in particular can be developed based on the violation of various rights enshrined in international treaties.

The right to bodily integrity describes that everyone has the right to decide what happens to their body. This includes decisions on what medical procedures are performed and if medications are taken. Restrictions of this right must be regulated by law, for instance in case someone is in a life threatening situation, but not able to make decisions due to being unconscious or otherwise incapable of communicating. In this case it is presumed that everyone has the desire to survive. This right is violated when intersex children are subjected to medically unnecessary medical interventions when they are too young to participate in the decision making proces. But it is also violated when an intersex person (or their parents/carers) are coerced into decisions about their body, for instance through psychological pressure, or by not receiving all relevant information needed to provide free and fully informed consent.

The right to self-determination describes that people have the right to decide over their own life. For instance, choosing a career, supporting a political or cultural movement, and to choose who to befriend. This right is violated, for instance, when intersex children are subjected to (unscientific) psychological treatment to steer the development of their gender identity to be in line with the sex characteristics that were medically and surgically assigned to them.

The right not to be discriminated against is violated by doctors and family members who choose or agree to non-consensual unnecessary medical treatments out of fear or ignorance. These are treatments that are non-negotiable for other people. This is most evident when comparing intersex variations to transgender issues. The treatments can be identical and also have the same purpose. However, if gender confirming surgery is available, in most countries transgender children have to wait until they are 18 before they can undergo surgeries that are performed on intersex children under a year old.

The right to freedom from violence and harassment is violated by the failure to include intersex and/or sex diversity in anti-discrimination laws and regulations, and/or the failure to enforce such laws and regulations.

The right to develop one’s own personality is violated when recognition and/or legal protection of human diversity in all its forms is lacking. Non-therapeutic medical treatments that can be postponed without health consequences until an intersex child can decide for himself are a violation the right to develop one’s own personality.

The right to life is violated when intersex children are killed.2This is happening in Africa, South America and China, among others However, the right to life is also violated when Preimplantation Genetic Diagnostics (PGD) is applied without intersex having been tested for meeting the requirements set by law for the applicability of PGD. But also when prenatal diagnostics are deliberately developed to detect intersex children to make it possible to abort before legal time limits.

The right to be free from torture or cruel, inhumane treatment is violated by performing non-consensual unnecessary medical treatment without the free, fully informed consent of the person himself. Offering treatments without proper long-term follow-up research is also a violation of this right.

The right to privacy is violated by the ongoing medicalization of “disorders of sex development”. As a result, information is known in an unnecessarily wide circle and can be easily leaked.  The mandatory display of sex or gender identity on identity cards is also, for some people, a violation of their right to privacy.

The right to work is violated when working conditions do not provide guarantees against discrimination and a safe, healthy workplace (both mental and physical). However, dropping out of school also interferes with the right to work.

The right to physical and mental health is violated by health professionals who carry out unnecessary medical treatments without the free, fully informed consent of the person themselves. But also when gender-neutral toilets are absent. This right is also violated when non-normalizing psycho-social help is not offered or when medical information is withheld. The off-label prenatal use of dexamethasone is also a violation of this right because the still lacks a scientific rationale, despite the fact that the treatment has been used for more than 30 years and there is evidence of adverse health effects from treatment with dexamethasone.

The right to start a family is violated when intersex people are castrated or sterilized based on non-evidence based medicine.

The right to protection from separation of child and parents is violated when parents are unable to accept their child due to the pathologization of intersex. It is also known that parents who have an intersex child often divorce relatively soon after birth because of the stress caused by the pathologization of intersex.

The right to education is violated when children are unable to complete their education, or to receive education at the highest level attainable for these children, due to the medicalization of intersex.

The right to stand up for the above rights is violated when information about intersex is withheld by health professionals or parents, or when these groups impose a pathologized image of intersex on the child through priming and framing.

Paginaversiering: een papierenrietje