Image: iStockPhoto VictoriaBar

Tips for inclusive intersex organisations

The likelihood that intersex people make themselves known to an intersex inclusive organisation is small if the organisation does not show in practice that it supports intersex rights. This article briefly explains how an organisation can be inclusive and work intersex inclusively, even if intersex people have not yet been contacted.

Image: photographer unknown

Intersex people are virtually invisible in our society due to pathologization, shame and taboo. If intersex people have united at all, it is mainly in patient groups. Of the 8.24 million intersex people in Europe (1:90) an estimated 1.5% is a member of a patient or contact group. In Europe, OII Europe is the first contact organization for intersex people that works strictly from a human rights perspective. The invisibility of intersex persons is reason for many organizations to wait to add intersex to their policies. But for intersex persons, the lack of policy at organizations is actually reason to remain invisible. Organizations can best break this chicken/egg situation by clearly communicating that they support the wishes of international intersex organizations.

Tips: General

  • Support the Declaration of Malta.
    This statement of demands from the international intersex community was produced in December 2013 by 30 intersex organizations from around the world. Its official name is Public Statement by the Third International Intersex Forum.
  • Talk to us, not about us.
    Involve us in setting policy and don’t just see intersex as a “target group” or “argument”. Too often, others use intersex as an argument to get their point across in a discussion that is not about intersex and does not benefit intersex people either. This is called objectivization or instrumentalization – don’t do that, it’s not nice and it’s not neat.
  • Think about your language.
    It’s intersex, not intersexual or hermaphrodite. And we are intersex people, not intersexed. The word hermaphrodite is used by some intersex people as a nickname, but it is something different from intersex – in fact, most intersex people find the word hermaphrodite offensive.
  • Make sure the addition of intersex to the policy makes sense.
    Automatically adding the word intersex to texts does not result in substantial improvement for intersex persons. Therefore, add intersex only when the policy actually concerns intersex persons.
  • Make intersex visible.
    This can be done on a small scale, for example by sharing information from intersex organisations on your own website/Facebook page. But even better is to include intersex in your projects – NNID would like to help you with that.
  • Intersex is not a disease or disorder
    Although intersex individuals sometimes have extensive medical histories, we are not necessarily sick. The i in LGBTI expressly does not represent the medical aspects.
  • Intersex is usually not visible on the outside (or on the genitals).
    Therefore, you cannot tell in advance what form of intersex someone has. It is also not possible to tell if someone has had medical treatment or not.
  • Intersex does not equal ambiguous genitalia.
    In 1 in 4500 children, the genitals at birth do not clearly show whether the child is a boy or a girl. This is called “ambiguous genitalia,” although no one knows exactly where “normal” ends and “ambiguous” begins. Overall, intersex is much more common: 1 in 90 births. There are even scientific publications that speak of 1.7%. In most intersex persons the sex and gender is perfectly clear, both to themselves and to others. Therefore, avoid undesirable stereotypes such as ‘unclear sex or gender’ and ‘female on the outside, male on the inside’.
  • Most intersex persons identify as male or female.
    Do not automatically assume that someone is nonbinary or experiences intersex as a third sex or gender.
  • Intersex is not a sexual orientation or gender identity.
    Do not automatically assume that intersex people are also gay, lesbian, bi, pan, transgender or queer. Among intersex people, just like other people, a wide range of sexual orientations and gender identities occur. Intersex is not considered an identity by most people. What we have in common is that LGB, T and I work together for promotion and human rights of people facing the social constructions of male and female.
  • Intersex is still a taboo subject.
    Don’t assume that someone who discloses themselves to you as intersex is also “out” to others.
  • None of the above tips apply to all intersex people.
    Therefore, do not assume anything automatically.
  • Use the information on this website as a starting point to start the conversation with us.


  1. Use the acronym LGBTI only when talking about all five groups at once
    LGBTI is an umbrella term that can be compared to the term ‘political parties’ – if there is news about two parties in politics, a newspaper will write ‘Political party 1 and Political party 2 have reached an agreement’ and not ‘the political parties have agreed’. So ILGA is an LGBTI organisation, but NNID is an intersex organisation.
  2. Not everyone identifies as being part of LGBTI
    Just as not all men who have sex with men identify as gay, not all intersex people recognize themselves in the terms intersex (or DSD). But even if people do use the terms intersex and DSD, it does not mean that they identify with the term LGBTI. Respect that, but keep doors open for those who do feel they are part of community.
  3. Consider using the acronym SOGIESC
    The letters SOGIESC stand for Sexual Orientation, Gender Identity & Expression, and Sex Characteristics. The acronym was originally used at the United Nations because LGBTI(I) was unmentionable for some UN member states. Nowadays, it is increasingly used outside the UN as well, whether written out in full or not, because the designation is more inclusive. It means that it does not ask for a special position for a minority, but that it asks for minorities to have the same rights as the rest of the population.
  4. Support each other, and do not abuse each other
    In changing social values related to the concepts of ‘man’ and ‘woman’, cooperation is necessary, but groups should not instrumentalise each other. Therefore, it is desirable to explain in a presentation on LGBTI what intersex is, but claiming that trans is a form of intersex at the brain level is an example of instrumentalisation.
  5. Avoid adding the i in a politically-correct way
    Where previously only the word trans was used, nowadays ‘trans and intersex’ is often used in a politically correct way, even if there is no actual link with intersex. This is undesirable because it makes it less clear that there is a difference between trans and intersex.
  6. You cannot extrapolate your own LGBT experiences to intersex
    Listen to the experiences of intersex people, but keep your questions general and not too personal. For example, asking what variation an intersex person has is usually not appreciated; rather ask if the person can tell you anything about intersex. Intersex people are in no way obliged to share their personal experiences with others.

Information for allies

The document below provides insight into how someone or an organisation can be an ally of the intersex community, even if they do not have direct contact with intersex people:

  • [PDF] Ghattas DC. Standing up for the human rights of intersex people: how can you help. Brussels: ILGA Europe & OII Europe, 2015.

Human rights information

The following documents focus on the human rights situation of intersex people and how it can be improved:

  • [PDF] Agius S. Human Rights and Intersex People. Issue Paper. Strasbourg, France: Council of the Europe – Commissioner for Human Rights, 2015.
  • [PDFEuropean Union Agency for Fundamental Rights. The fundamental rights situation of intersex people. Focus Paper. Wien, Österreich: FRA – European Union Agency for Fundamental Rights, 2015.
  • [URL] Malta Statement – Public Statement by the Third International Intersex Forum.

Conversation with Betsy Driver

Do you want to know what the intersex community is up to? Then this video is a good start. Betsy Driver talks about how important it is to meet other intersex people, how doctors use surgery to ‘normalise’ children and what she thinks is the common goal of the intersex community.

Interview with Kitty Anderson and Mika Venhola

Kitty Anderson is co-chair of OII Europe and chair of Intersex Iceland. Mika Venhola, a paediatric surgeon from Finland.