Depathologize Intersex

With this 2023 Intersex Awareness Day Campaign we want to help people gain an understanding of what pathologizing intersex means, why it has to stop and how we can start depathologizing intersex. Pathologizing our intersex bodies has severely negative impacts on our lives and health and is one of the root causes of the human rights violations we face.

---

The terms pathologization and medicalization are often used interchangeably, but they do have some subtle differences.

Pathologization

… is the interpretation of behaviours, sensations, perceptions, thoughts, social relationships, or interpersonal relationships as pathological, that is as “sick”, in “need to be fixed” or “treated”. Pathologization can be initiated and solidified by medical professionals, but also by individuals or society as a whole. On a social level, pathologization can be used to enforce what is considered “normal” vs. “abnormal”, creating and legitimising stigma and discrimination against those considered being “outside of the norm”. 

The negative consequences of pathologization are often severe.  However, in a societal climate that considers a certain physical and behavioural realities as non-normative and as such as defective, having one’s physical reality or behaviour being understood as a medical problem – and not as a problem of societal lack of acceptance and support – can sometimes be experienced as affirming, even liberating, “being seen as scientifically legitimated, since to see a condition as something gone awry in the body suggests that it can be changed rather than being an intractable part of one’s personality”.³ 

Medicalization

… is a term used to describe a process of social change in which human life experiences and areas of life become the focus of systematic medical research and responsibility that were previously outside the realm of medicine. Medicalization can lead to expecting, seeking and receiving medical treatment for issues that are not medical in nature. For example, the medicalization of childbirth has led to the increasing use of interventions such as epidurals and C-sections.

In other words, pathologization is the act of framing and generalising a given physical or behavioural reality as  “sick”, “abnormal”, “disordered”, non-functional, in need of “fixing”, while medicalization is the process of expanding the scope of medicine to include physical or behavioural realities which were not treated as a medical problem before, through diagnoses, medical practices and research.

It is noteworthy that both pathologization and medicalization can simultaneously have positive and negative consequences. On one hand, they can lead to the development of new treatments and interventions that can improve people’s lives. Or on the other hand, they can lead to the overdiagnosis and overtreatment of people who do not actually have a medical problem.

In the case of intersex bodies and variations, both can be true as well: Some intersex people might have specific health needs that are directly related to their intersex variation, and therefore being able to access specific medical treatment(s) for curing an ailment would be beneficial. 

But for many intersex persons the negative impacts of pathologization and medicalization are the more likely outcome and experience: They are subjected to harmful medical practices, especially but not limited to, surgeries that are irreversible, deferrable, non-vital interventions on healthy bodies. These interventions most often take place in infancy and childhood, and without their personal and fully informed consent. For intersex teenagers and adults too, pathologization continues to severely impact their access to healthcare negatively: as many doctors today might only be aware of the DSD nomenclature, it forces intersex people to disorder themselves to gain access to appropriate care.⁴ Also, acquired health issues or trauma by previous medical interventions earlier in life, or through continuous stigmatising and discriminatory medical services, all can lead to, among other things, avoidance of and/or exclusion from necessary treatments.

---

---

While we have seen many great improvements and increased visibility towards intersex rights over the last decades, negative perceptions and attitudes viewing intersex as a disorder or as “abnormal” are still very common and continue to prevail in our society, which also continue to lead to human rights violations, including IGM. Sometimes these negative views present themselves as outright intersexphobia.

Intersexphobia exists: Intersexphobia, or interphobia, can be defined as a range of negative attitudes (e.g. emotional disgust, fear, violence, anger, or discomfort) felt or expressed towards people whose sex characteristics do not conform with society’s expectations of how the sex characteristics of a person, understood only as male or female, should look. Very often the same range of negative attitudes is also expressed towards the biological fact that sex is a spectrum, and that, therefore, variations of sex characteristics other than the male or female variations exist. The human rights violations intersex people face as a result of societal intersexphobia include, among others, pathologisation and genital mutilation (IGM).

Dan Christian Ghattas (2019): Protecting Intersex People in Europe. A toolkit for law and policy makers. With digital appendix and checklist. Ed. by ILGA-Europe and OII Europe.⁶

Medical model vs. social model: The common perception is that when a person’s body is not fitting the normative idea of male and female, this is considered as “having a disorder” and as something which is in need of “fixing” (medical model). This model persists in the latest revision of the WHO’s International Statistical Classification of Diseases and Related Health Problems (ICD), and attempts to depathologize the language within the ICD were disregarded.⁷ What the intersex human rights movement has been continuously saying, is that it is not our bodies that need “fixing” – it is the social concept of sex and gender, and its associated stereotypes that is required to change (social model).

---

Multiple institutions including the Office of the United Nations High Commissioner for Human Rights, and UN and regional human rights mechanisms, have advised that States should, as a matter of urgency, protect the autonomy of intersex adults and children and their rights to health, to physical and mental integrity, to live free from violence and harmful practices and to be free from torture and ill-treatment.

Human Rights Violations Against Intersex People, A Background Note, United Nations Human Rights Office of the High Commissioner, 2019¹

We need to

• raise awareness of specific needs of intersex people in the medical context
• break social stereotypes
• raise awareness of specific needs of elderly intersex people
• review medical protocols and abolish discriminatory, pathologizing and stigmatising elements
• provide support structures for intersex persons and their families

…and much more:

---

Here we would like to share some resources in regards to health reccommended by the European intersex community:

---

A few thank you‘s for giving input and advice in creating this years campaign: The intersex community, especially the participants during the health workshop at the Community Event 2023 in Paris, France, E. Matthigack from OII Germany, and the whole OII Europe Team! THANK YOU!

Footnotes

1. Background note Human Rights Violation against Intersex People (OHCHR), 2019 External link ↩︎
2. Council of Europe Commissioner for Human Rights, Human Rights and Intersex People, Issue Paper, 2015 External link ↩︎
3. Sholl J. The muddle of medicalization: pathologizing or medicalizing? Theor Med Bioeth. 2017 Aug;38(4):265-278. doi: 10.1007/s11017-017-9414-z. PMID: 28674861. ↩︎
4. Demographics, 2016, IHRA link to external website ↩︎
5. “Intersections: Diving into the FRA LGBTI II Survey Data – Intersex Briefing”,  ILGA-Europe & OII Europe, 2023 ↩︎
6. Dan Christian Ghattas (2019): Protecting Intersex People in Europe. A toolkit for law and policy makers. With digital appendix and checklist. Ed. by ILGA-Europe and OII Europe External link ↩︎
7. GATE Submission to WHO on Intersex Issues in the process of ICD reform (2017) link to external website and Publication of joint ICD submission (2014) link to external website. See also: Carpenter M. Intersex Variations, Human Rights, and the International Classification of Diseases. Health Hum Rights. 2018 Dec;20(2):205-214. PMID: 30568414; PMCID: PMC6293350. ↩︎
8. See for example “Wonders and the Order of Nature 1150–1750” by Lorraine Daston and Katharine Park ↩︎
9. Clinical European study on the outcome of surgical and hormonal therapy and psychological intervention in disorders of sex development (DSD) link to external website ↩︎
10. Statement of the 1st European Intersex Community Event, Vienna, 2017 External link ↩︎