Essay~ International Intersex Awareness Day 2015
Unfit to live? Reflections on Eugenics and Intersexuality
By Joshua Sehoole
South Africa, 26 October 2015
What is Intersex?
As an umbrella term intersex describes a wide range of natural bodily variations. Intersex people are born with sex traits (including gonads, genitals and chromosomal patterns) that do not fit typical binary notions of male and female bodies. In some cases intersex traits are visible at birth, while in others they are not apparent until puberty. Some chromosomal intersex variations may not be physically apparent at all.
What is Eugenics and what does it have to do with Intersexuality?
Eugenics is a set of beliefs and practices that aims to improve the genetic quality of the human population. In other words, it seeks to shape human evolution by selecting qualities that are progressive and regressive respectively, and acts to increase the former and decrease the latter. The danger of eugenics lies in how it decides upon selection criteria, which is vulnerable to abuse. Determinations are made by whichever group holds the political, socio-economic and medical power and privilege to do so. It has resulted in atrocities such as the Holocaust and the attempt to create an "Aryan race" in Nazi Germany. It gives rise to discrimination against and curtailment of the sexual and reproductive health rights of various marginalised groups such as the black, poor, and disabled communities.
In the decades following World War II, with the institution of human rights, many countries gradually abandoned eugenic policies. Such policies often included "positive" measures to increase populations they wanted more of by encouraging individuals deemed "fit", to reproduce. “Negative" measures aimed to curb populations they wanted less of by instituting marriage prohibitions and forced sterilisation of people deemed "unfit" for reproduction. While many think of eugenics as a morally reprehensible historical science, in modern technologies such as the selective implantation of embryos, and prenatal screening and treatment of embryos with "disorders", the practice remains alive and well. It has in fact recently included intersex variations as genetic "disorders" to screen for.
Medical discourse on what is considered disordered and healthy respectively
While broader systems of oppression discriminate against intersex people by perpetuating binary notions of sex, the role of biomedicine in this cannot be overlooked. Intersex variations are clearly pathologised in the International Classification of Diseases, commonly referred to as ICD. This is an international standard diagnostic tool maintained by the World Health Organisation (WHO), which is the coordinating authority for health within the United Nations System.
As a tool designed to promote international comparability of statistics around healthcare , ICD is often presented as a neutral record of health problems, based on objective medical fact. Rarely are broader institutional systems such as patriarchy, racism, privilege, and ablism examined, albeit that they impact on this "neutrality". ICD 10 - the publication's current version - clearly pathologises bodily diversity in general and intersexuality specifically by presenting intersex variations as manifestations of physical "deformations", "abnormalities" and "malformations".
This opens the door to harmful, unnecessary medical interventions on intersex people. In the way it describes various "conditions", ICD indirectly and silently creates a perception of what is healthy and unhealthy, normal and abnormal, desirable and undesirable. This impacts on how medical practitioners, researchers and society at large understand morality in medicine. For example, while selective abortion of female embryos is seen as unethical by most medical ethicists, termination of pregnancies involving intersex foetuses is deemed ethical since intersex is regarded as disordered in and of itself.
ICD 10 is currently being revised by the WHO and the release date for ICD 11 is planned for 2018. Advocacy efforts need to be channelled to transform the narrative around intersexuality in ICD that so clearly promotes medical intervention. It needs to be broadened to reflect the lived realities of the intersex community and to combat the hegemony of a privileged few whose understanding of health and wellbeing affect the lives of many.
How do I get involved?
There could not be a more opportune time to effect change by getting involved in the revision process and pushing for better language, descriptions, and diagnostic categories with regard to intersex variations. To get involved please get in touch with:
or Joshua Sehoole
Iranti-org, GATE, Gender Dynamix and many other organisations remain committed to increasing the involvement of African activists around the ICD revision process in the run up to 2018. Help create a world where we challenge the overemphasis on normative and unrealistic definitions of health, and create instead an approach that includes, acknowledges and celebrates natural human variation.