Author: Valentine Hallard, MA & MSc
December 3, 2024
Introduction
13 years ago, I was five months pregnant when two obstetricians at my local hospital insisted that we must terminate the healthy and desirable baby that I was carrying because it had an extra X on the sex chromosome. They also insisted that the standard procedure for any fetus with XXY chromosomes is termination; if born, we were told, the child would be “a freak, a monster, [and] a mistake of nature.” These were their exact words. Despite their pressure, we chose to get a second opinion from a better-informed doctor. We continued with the pregnancy, and we are now blessed to have a wonderful and healthy teenage intersex child. However, our child’s life in those moments was in danger of being lost through sheer ignorance and prejudice. From similar accounts of other couples, we know that this standard procedure continues to be followed, even today, propelling a silent genocide.[1]
Even before intersex people are born, they are treated as “abnormal,” and their existence is threatened by what some doctors perceive as “necessary” medical interventions.[2] In the case that intersex infants are permitted to be born, they are often subjected to invasive, irreversible, and non-consensual surgeries to “correct” intersex variations.[3]
The Office of the United Nations High Commissioner for Human Rights defined intersex as a “person who is born with sexual anatomy, reproductive organs, and/or chromosome patterns that do not fit the typical definition of male or female” (HCHR 2019).[4] The intersex population is extremely diverse, with more than 40 relevant genetic traits. It is estimated that between 0.5% and 1.7% of infants are born with intersex traits.[5] However, these numbers do not adequately capture the number of people with intersex traits. This is partly due to a variety of factors, such as varying medical definitions of intersex, myriad diagnostic challenges, and the wide-ranging difficulties faced by researchers who conduct studies that are impacted by the stigma associated with intersex traits.
Intersex people have the right to health and physical integrity, and the right to be free from torture and ill-treatment. These human rights are often violated. Unfortunately, there is a common lack of access to informed decision-making, informed consent, medical records, and justice (i.e., Carpenter 2016; Crocetti et la. 2020). Research cites a practice of normalizing genital surgeries and related medical interventions, which are often performed on intersex infants and children to make them “fully male” or “fully female” to fit societal and legal standards (i.e., Butler, 2004; Carpenter, 2018; Karkazis, 2008). In most cases, such interventions are not medically necessary and have extremely adverse outcomes, which often lead to “unacceptable levels of physical and psychological trauma” (Ferrara and Casper 2018, 1). Medical interventions on intersex people are known to result in chronic pain, sexual dysfunction, a loss of sexual sensation, infertility, lifelong hormone treatment, repeated surgeries, and inaccurate legal sex/gender assignment (Office of the High Commissioner for Human Rights et al., 2016).[6]
A brief history of intersexuality and medical intervention
Until the mid-twentieth century, medical intervention in hermaphroditism, later known as intersexuality, was relatively rare, especially because of the limited medical technology and ability to intervene at the time of birth. Instead of altering the hermaphroditic body, medical professionals sought to understand and categorize it. During the first half of the twentieth century, the development of medical technology and the increasing influence of healthcare professionals and institutions on patients' health decisions, behaviors, and access to treatments made medical intervention on intersex people possible. “Normalizing” surgery did not become the standard treatment for intersex people until the mid-twentieth century (i.e., Dreger & Herndon, 2009; Holmes, 2009; Karkazis, 2008; Reis, 2005, 2021).
In the 1950s, psychologist John Money, and his colleagues from Johns Hopkins University, developed a systematic model of gender assignment and treatment methods for people born with intersex variations. The “optimum gender of rearing” model is based on the idea that gender identity is fluid in early childhood. Once intersex bodies were surgically modified, children would develop personalities that aligned with their assigned gender, provided that they grew up in a social environment corresponding to their assigned gender. This model implies that gender can be shaped by human intervention. Medical professionals now had a model that they could utilize to justify their actions to alter a child’s sexual characteristics through surgery and/or hormonal intervention. Subsequently, parents were encouraged to shape their child’s gender identity by raising them as either a girl or a boy.
This model of intervention was rapidly and widely adopted in the medical field. However, several examples of sex reassignment have highlighted the limitations of this model. Many of these children never felt comfortable in their assigned sex. Some were unaware of their medical background, as doctors advised their families to keep it confidential. When these individuals eventually learned the truth, some of them chose to change their gender, while others suffered throughout their entire lives with the physical and psychological consequences of living with surgically altered genitals and reproductive organs.
Among them was David Reimer. David was born a biological male, but he suffered a severe injury as an infant which resulted in irreparable damage to his penis. Following Money’s recommendation, his parents consented to genital surgery and raised him as a girl, with the assumption that if his genital appearance matched his assigned gender, he would live a “normal” life. Despite his upbringing, David rejected the female identity. He suffered considerably because of his sex reassignment and imposed gender identity. David committed suicide at the age of thirty-eight. Despite evidence that Money’s approach to gender identity and treatment for intersex people was wrong, early genital surgery continues to be the norm in many places around the world, including the United States, Canada, and the United Kingdom.
Gender, sexuality, and the “normal” body
Modern Western society is based on a binary system of sex and gender. Sex is categorized as “female” and “male,” gender as “women” and “men,” and sexuality as “homosexuality” and “heterosexuality.” This view presumes that gender difference derives from biology; body characteristics (i.e., chromosomes, gonads, hormones, external genitals, internal reproductive structure) must match the assigned gender (i.e., gender identity, gender role, and sexuality), (Karkazis, 2008). Whoever falls outside of the sex/gender binary is pathologized and ought to be “fixed” (Carpenter, 2018; David and Murphy, 2013). For example, a medical intervention on intersex children is considered “successful” if the child develops mannerisms and sexual preferences (e.g., heterosexuality) that “match” with the assigned gender (Ben-Asher 2006).
According to Bulter (2004), this binary model of sex and gender constitutes a rigid norm that is part of a larger system of power that aims to control individuals by dictating how individuals should act, present themselves, and interact based on their perceived gender. This norm is reflected in the law, as the sex/gender dichotomy is the condition for individuals’ legal existence (i.e., birth certificate, identification documents, passports), as well as an individual’s integration into society via institutions such as schools, workplaces, sports, or healthcare systems. Those who do not fit with this binary model face systemic oppression and marginalization. They are discriminated against in several areas such as employment, access to sports, and even the right to start a family.
Activism and intersex rights movements
Since the 1990s, the medical treatment of intersexuality has been seriously questioned in many spaces. Intersex rights movements gained momentum when intersex people who had undergone early genital surgery began to speak out about their experiences and started to question the necessity and effectiveness of these procedures. Intersex people reported the following: the surgery had diminished their sexual sensitivity, making sexual contact painful and orgasm impossible; their genitals were visibly abnormal; the surgery and other aspects of their medical treatment instilled a deep sense of shame about their bodies; the surgery was medically unnecessary; and the decision to undergo the surgery was not made by them (Davis & Murphy, 2013). Moreover, many intersex people reported that frequent medical interventions, including repeated genital examinations, exposure of their bodies to multiple practitioners, photography of their genitals, and stigmatizing language used by doctors, were traumatizing. For many, these negative experiences resulted in medical mistrust and healthcare avoidance, even for non-intersex-related issues.[7] Overall, most intersex people believe that surgeries aimed at “normalizing” intersex bodies should only be performed when an individual is old enough to make their own choices.
The shift in the way intersexuality was perceived and treated occurred in the context of broader social changes and the decline of medical authority. Increased access to medical information has empowered patients (and parents) to make more informed decisions and, at times, question medical advice. Additionally, the growing emphasis on patient autonomy and medical ethics has led to intersex people being recognized as having the right to make decisions about their bodies.
Moreover, changing understanding of sex, gender, and sexuality—along with movements advocating for the acceptance of non-normative identities and bodies have reshaped the way intersexuality was perceived and treated. Over the last several decades, feminist and queer theorists have criticized the traditional sex/gender binary model and challenged the understanding of gender differences as natural or biologically determined. As Butler (2004) argues, the presence of intersex traits in some people demonstrates the inadequacy of the male/female binary that is imposed in human society and illustrates the large range of bodies that exist in the world. She further argues that gender is a social construct that is shaped by societal norms, rather than by an intrinsic quality that comes from biological sex. Intersex rights movements[8] and feminist scholars strongly condemned the termination of intersex fetuses and medical interventions on intersex infants and children on the grounds of medical “abnormality” (Carpenter, 2016, 2020; Crocetti et al. 2020; Holmes 2009; Karkazis, 2008).
Human rights framework
Intersex people face systematic oppression, discrimination, and human rights violations due to their physical characteristics. This includes the violation of their rights to health and physical integrity, to be free from torture, and ill-treatment. Intersex people deserve access to informed decision-making, informed consent, medical records, and justice (Carpenter 2016; Crocetti et al., 2020). Deeply rooted in human rights principles, there is an increasing global consensus to ban non-consensual medical interventions on intersex people.
For example, the Malta Declaration’s primary demand is to end mutilating and "normalizing" practices, such as genital surgeries and psychological treatments. It emphasizes that intersex individuals should have the power to make their own decisions regarding their bodily integrity, physical autonomy, and self-determination. The Statement of Riga (2014) reaffirmed the necessity to ban non-consensual medical and psychological treatments. It stated that medical professionals should not carry out any treatment aimed at modifying sex characteristics until the individual can give informed consent. Later, the Vienna Statement called on governments to implement legislative protections banning medical interventions on children with variations in sex characteristics for social, psychosocial, cultural, or cosmetic reasons. It also suggested that this could include laws that penalize medical professionals involved in Intersex Genital Mutilation (IGM). The Darlington Statement demanded the immediate criminalization of deferrable medical interventions, including surgical and hormonal procedures, that alter the sex characteristics of infants and children without personal consent. It called for consent that is freely given and fully informed. The African Intersex Movement and the Asian Intersex Movement have also publicly urged to end mutilating and “normalizing” practices like genital surgeries and other medical interventions through legislative measures. They insisted that intersex individuals must be allowed to make their own decisions regarding their bodily integrity, physical autonomy, and self-determination. They demand an end to non-consensual sterilization of intersex people.
The demands expressed by intersex rights movements are echoed in reports from the UN Special Rapporteur on Torture, who labeled intersex surgeries as a form of "torture." This language is also reflected in documents from the Council of Europe, the World Health Organization, the European Union, and the Yogyakarta Principles. In 2016, UN experts[9] along with the Council of Europe Commissioner for Human Rights, the Inter-American Commission on Human Rights, and other UN Special Rapporteurs called for an immediate end to human rights violations against intersex individuals within medical settings. They stated that “States must, as a matter of urgency, prohibit medically unnecessary surgery and procedures on intersex children. They must uphold the autonomy of intersex adults and children. They support 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. Intersex children and their parents should be provided with support and counseling, including from peers.”[10]
In response to legal demands and recommendations, several countries have enforced laws to protect the rights of intersex people and prohibit unnecessary surgery on intersex children. Malta is often cited as an example, having passed legislation in 2015 that explicitly banned unnecessary medical interventions on intersex minors, as well as granting progressive rights to intersex people. The Act is based on the fundamental right to bodily integrity and physical autonomy. The Act supports the right to maintain respect for one’s gender identity and freedom of personal development by providing equal treatment. In 2021, over 50 nations signed a U.N. statement that advocated for protection against abuse and discrimination for intersex individuals, including in the medical field. Since 2023, six countries, Germany, Greece, Iceland, Malta, Portugal, and Spain, put legal measures in place to prohibit intersex surgeries. Countries like Austria, Cyprus, and France have suggested similar bans. However, many countries still perform early genital surgery on intersex children. For example, in 21 European countries, surgeries aimed at "normalizing" intersex children are still being carried out. In 8 of these countries, a legal representative can provide consent for these procedures without the child's consent.[11]
Conclusion
There is a tendency to perceive variations in gender development as purely natural and biological, along with our societal and medical perceptions of normality based on a binary gender model. Whoever falls outside of the female/male dichotomy is pathologized and told that they have a problem that ought to be “fixed.” Until recently, such treatment was regarded as a necessity. However, intersex people, feminist scholars, and other advocates strongly argue against these practices. Since the 1990s, there has been significant progress made in improving medical and societal attitudes toward intersex individuals. Substantial work remains to ensure that children born with intersex variations are treated in ways that prioritize their long-term well-being over societal expectations.
Glossary
Beneficence: the act of doing good or being kind to others.
Bodily integrity: the inviolability of the physical body and the right of individuals to control what happens to their bodies.
Chromosome patterns: chromosomes are structures made of DNA and proteins that carry genetic information. Chromosome patterns are specific arrangement and number of chromosomes in an organism's cells.
Chronic pain: long-lasting pain that persists for weeks, months, or even years, often beyond the usual recovery time for an injury or illness.
Disclosures: the act of revealing or making information known, often in a formal or official context.
External genitals: the reproductive organs that are located outside the body.
Feminist and queer theorists: scholars and activists who analyze and critique social norms related to gender, sexuality, and identity.
Gender assignment: the classification of an individual as male or female at birth.
Gender identity: an individual's deeply held sense of their gender, which may be male, female, a blend of both, neither, or something else entirely.
Gender roles: the social and behavioral norms that are considered appropriate for individuals based on their perceived gender.
Genetic traits: characteristics or features of an organism that are determined by its genes.
Gonads: the reproductive organs that produce gametes (sex cells) and hormones.
Hermaphroditism: an organism having both male and female sex organs or other sexual characteristics.
Hormone treatment: the administration of hormones to address various medical conditions or to support specific bodily functions.
Infertility: the inability to conceive a child.
Internal reproductive structure: the organs and systems located within the body that are involved in reproduction.
Marginalization: the process by which certain individuals or groups are pushed to the edges of society, leading to their exclusion from mainstream social, economic, or political activities.
Medical authority: the power and influence that medical professionals, institutions, or systems hold over healthcare practices, decisions, and policies.
Medical ethics: a field of study that examines the moral principles and values guiding medical practice and healthcare. It involves the analysis of ethical issues that arise in medicine, such as patient autonomy, informed consent, confidentiality, and the allocation of resources.
Medical interventions: actions taken to prevent, diagnose, treat, or manage health conditions.
Medical technology: the use of various technologies, devices, and systems to diagnose, monitor, and treat medical conditions.
Non-normative identities and bodies: those that do not conform to societal standards or expectations regarding gender, sexuality, ability, or physical appearance.
Physical and psychological trauma: physical trauma refers to injury or damage to the body resulting from an external force. Psychological trauma refers to the emotional and mental response to distressing events or experiences, such as abuse, loss, or witnessing violence.
Physical autonomy: an individual's right and ability to make decisions about their own body and physical well-being.
Reproductive organs: the anatomical structures involved in the reproductive process, responsible for producing gametes (sex cells) and facilitating reproduction.
Self-determination: the ability and right of individuals or groups to make choices about their lives, actions, and futures. It emphasizes personal agency, autonomy, and the power to shape one’s identity, beliefs, and circumstances without external control or coercion.
Sexual anatomy: the physical structures and organs involved in sexual reproduction and sexual function.
Sexual dysfunction: difficulties experienced during any stage of the sexual response cycle, which can affect sexual desire, arousal, or the ability to engage in sexual activity.
Sexual sensation: the physical and emotional feelings experienced during sexual activity or arousal.
Sexuality: the complex range of feelings, behaviors, identities, and experiences related to sexual attraction and intimacy.
Social construct: an idea or concept that is created and accepted by a society or culture rather than being inherently natural or universal. These constructs arise from social interactions and shared beliefs. They can influence behaviors, perceptions, and norms.
Societal and legal standards: societal standards refer to the norms, values, and expectations that a particular community or society holds regarding behavior, beliefs, and practices. Legal standards are the established laws and regulations set by a governing body that define what is permissible or prohibited within a society.
Systemic oppression: the institutionalized and pervasive discrimination against particular groups within society based on characteristics such as race, gender, sexual orientation, class, or ability. This form of oppression is embedded in the policies, practices, and cultural norms of various social systems, including government, education, healthcare, and the economy.
Transparent diagnoses: the clear, open, and honest communication of medical diagnoses and health information between healthcare providers and patients.
Footnotes
[1] https://intersexgreece.org.gr/en/2022/07/13/the-testimonies-of-intersex-people-are-shocking-historic-moment-if-the-bill-is-passed/
[2] For example, Preimplantation Genetic Diagnosis (PGD), a testing procedure used to identify genetic disorders, can be used to screen for intersex characteristics in embryos.
[3] These surgeries include the removal of the gonads (testes or ovaries), (gonadectomy), the creation or reconstruction of a vagina (vaginoplasty), the construction or reconstruction of a penis (phalloplasty), the surgical reduction of an enlarged clitoris (clitoral reduction).
[4] Office of the High Commissioner for Human Rights. Background note on human rights violations against intersex people [Internet]. 2019. Retrieved from: https://www.ohchr.org/EN/Issues/Discrimination/Pages/BackgroundViolationsIntersexPeople.aspx
[5] Intersex people OHCHR and the human rights of LGBTI people. Retrieved from:
[6] End violence and harmful medical practices on intersex children and adults, UN and regional experts urge” (Office of the High Commissioner for Human Rights, 24 October 2016). Available at http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=20739&LangID=E.
[7] Human Rights Watch. 2017. “I Want to Be Like Nature Made Me”: Medically Unnecessary Surgeries on Intersex Children in the US.” Retrieved from: https://www.hrw.org/report/2017/07/25/i-want-be-nature-made-me/medically-unnecessary-surgeries-intersex-children-us.
[8] The intersex rights movement includes many organizations, including the Intersex Society of North America (ISNA), Advocates for Informed Choice (interACT), Bodies Like Ours, Intersex Initiative, and Organisation Intersex International (the Intersex Campaign for Equality).
[9] This includes the Committee against Torture, the Committee on the Rights of the Child, and the Committee on the Rights of Persons with Disabilities.
[10] United Nations Human Rights Office of the High Commissioner, Intersex Awareness Day, “End
violence and harmful medical practices on intersex children and adults, UN and regional experts
urge”, 2016. Retrieved from: https://www.ohchr.org/en/press-releases/2016/10/intersex-awareness-day-wednesday-26-october
[11] Explained: what is intersex surgery and where it is banned? 2023. https://www.openlynews.com/i/?id=d24d7290-e353-4c47-b412-03ccad0ee34c#:~:text=More%20than%2050%20countries%20signed,bans%2C%20according%20to%20ILGA%20World.
Sources
Ben-Asher, N. 2006. “The Necessity of Sex Change: A Struggle for Intersex and Transsex Liberties.” Harvard Journal of Law and Gender, 29(51), 2006, Available at SSRN: https://ssrn.com/abstract=1267783
Butler, J. 2004. Undoing Gender (1st ed.). Routledge. https://doi.org/10.4324/9780203499627
Carpenter, M. 2016. “The human rights of intersex people: addressing harmful practices and rhetoric of change.” Reproductive Health Matters, 24(47) 74-84, DOI: 10.1016/j.rhm.2016.06.003
Carpenter, M. 2018. “What do Intersex People need from Doctors?” LGBTQIA 20 (4). https://www.ogmagazine.org.au/20/4-20/what-do-intersex-people-need-from-doctors/
Carpenter, M. 2020. “The OHCHR Background Note on Human Rights Violations against Intersex People.” Sexual and Reproductive Health Matters 28 (1) https://doi.org/10.1080/26410397.2020.1731298
Crocetti, D., A. G. Arfini, S. Monro, and T. Yeadon-Lee. 2020. “You’re Basically Calling Doctors Torturers”: Stakeholder Framing Issues around naming Intersex Rights Claims as Human Rights Abuses.” Sociology of Health and Illness. https://doi.org/10.1111/1467-9566.13072
Davis, G., and Murphy, E.L. 2013. “Intersex Bodies as a State of Exception: An Empirical Explanation for Unnecessary Surgical Modification.” Feminist Formations 25 (2) http://www.jstor.org/stable/43860689
Dreger, A., Herndon, A. 2009. “Progress and Politics in the Intersex Rights Movements: Feminist Theory in Action.” GLQ: A Journal of Lesbian and Gay Studies, 15(2) https://doi.org/10.1215/10642684-2008-134
Ferrara, M., Casper, M.J. 2018. “Genital Alteration and Intersex: a Critical Analysis.” Curr Sex Health Rep 10 https://doi.org/10.1007/s11930-018-0142-9
Holmes, M. 2009. Critical Intersex. Farnham: Ashgate.
Jenkins, T. M., and S. E. Short. 2017. “Negotiating Intersex: A Case for Revising the Theory of Social Diagnosis.” Social Science & Medicine. https://doi.org/10.1016/j.socscimed.2016.12.047
Karkazis, K. 2008. Fixing sex: intersex, medical authority, and lived experience. Durham: Duke University Press.
Reis, E. 2005. “Impossible Hermaphrodites: Intersex in America, 1620–1960.” Journal of American History, 92(2) https://doi.org/10.2307/3659273
Reis, E. 2021. Bodies in Doubt: An American History of Intersex (2nd ed.), Baltimore, MD: John Hopkins University Press.