How do intersex bodies create uncertainty in the medical system? How does the medical system address the uncertainty of intersex bodies? In my work, I explore the constant struggle between the uncertainty caused by intersex bodies and the biomedical practices used to control and regulate them. Based on my study of biomedical discourses and the narratives of physicians, parents, and intersex people in Israel and Germany, I suggest that historical and contemporary biomedical practices used to control and “clarify” or “ascertain” sex/gender uncertainty, including the classification of sexual characteristics and the concealment of intersex bodies through early surgical treatment to assign dimorphic soma/gender appearance, have paradoxically increased the uncertainty surrounding intersex bodies.
To control uncertainty, the medical system moves between two conflicting paradigms. The first is evidence-based medicine (EBM), which emphasizes the biomedical model, focusing on the somatic symptoms of diseases (Timmerman, 2005), and the second is the paradigm of patient-centered care, creating individualized treatment for the patient. It focuses not only on their somatic symptoms and existing medical guidelines, but also on the patient’s needs, somatic experiences, and socio-cultural aspects.
In my fieldwork on intersexuality, which includes interviews with medical professionals, parents, and intersex adults in Israel since 2005 and in Germany in 2015, I explore the vicious circle of uncertainty. Currently, intersex conditions are called Disorders of Sex Development – DSD. The first popular system for classifying intersex bodies was created by the German pathologist Theodor Albrecht Edwin Klebs (1834–1913). His taxonomy centered on the gonads – testes for man, ovaries for woman. He classified hermaphrodites as true and pseudo-hermaphrodites. Masculine pseudo-hermaphroditism was defined as the presence of testes and feminine genitalia, and feminine pseudo-hermaphroditism as the presence of ovaries with masculine genitalia. True hermaphroditism was defined as the presence of both ovaries and testes and was revealed to the medical gaze mainly during autopsy. This true/pseudo classification meant that people who were diagnosed by their physicians as pseudo-hermaphrodites – no matter whether they lived as women or men, married and lived their lives as they chose – were forced by law to change their social status and live in accordance with their gonads.
The new classification system of DSD/intersex bodies, however, emphasizes the importance of sex chromosomes, and includes three main categories: 46XX DSD, 46XY DSD, and chromosomal DSD. Sex chromosomes have now replaced the gonads in terms of importance and genes are currently the focus of the diagnostic gaze. The classification of the sex chromosome and statistical data collected systematically by endocrinologists since 1950s shows that most of intersex patients did not change their gender status, which legitimized the ongoing practice of gender assignment for babies and the alteration of their bodies in accordance with the assignment. Yet, even with the new classification, many intersex bodies are left in doubt, with no statistical background to guide the professionals on how to assign them an appropriate gender.
This signifies the new emergent paradox: along with the growing centrality of genes for the diagnosis process, more intersex bodies are left outside the domains of diagnosis. A geneticist in Germany explained to me that 70% of intersex bodies remain undiagnosed. And in Israel, because of the unregulated policy of using genetic screening technology, when a genetic diagnosis exists for DSD variations, genetic counseling advises family members with a history of diagnosed intersex bodies to use Preimplantation Genetic Diagnosis in order to prevent the future birth of these somatic variations.
Preventive care is the present and future of intersex bodies in the era of genetic screening. Nonetheless, it is a vicious circle because the uncertainty of unknown intersex bodies motivated geneticists to find the genetic factors that cause genetic uncertainty, leading to the broadening of screening to many genes and the revelation of genetic factors that ultimately threaten the existence of intersex bodies with genetic explanations. However, intersex babies continue to be born without any genetic explanation, and so the cycle continues.
Another biomedical practice to control uncertainty is the concealment of intersex bodies and gender surgeries. The ideology of the dimorphic soma/gender order assumes that human beings live in a society with only two somatic genders, feminine and masculine, which are binary and polar. In order to prevent social isolation and future bullying, the medical experts “help” intersex babies fit into the existing soma/gender norms.
However, as many parents and intersex people note, the surgeries do not end after one procedure, but extend over an extensive duration of ongoing treatment, and there are many surgical complications and somatic reactions – the closing of the vaginal opening, labial adhesion, infections, and more – that lead to further surgical interventions.
This struggle to conceal intersex characteristics creates a vicious circle of uncertainty between the procedures aimed at normalizing intersex bodies – and the bodies that challenge these procedures – which leads to new surgical techniques and vice versa.