Thirty years ago, on 26 October 1996, intersex activists gathered outside the annual conference of the American Academy of Paediatrics in Boston, United States, to protest against medically unnecessary cosmetic genital surgeries on intersex infants and children. These procedures, often performed before children could provide informed consent, sought to make their bodies conform to conventional understandings of male and female anatomy. The activists challenged not only these medical practices but also the secrecy and shame that enabled them.
Three decades later, as the world commemorates Intersex Awareness Week, the concerns which animated that historic protest remain strikingly relevant. Indeed, they are the very concerns that the South African Human Rights Commission (SAHRC) seeks to address through its Intersex Children: Guide for Parents and Guardians. The pamphlet responds to the same fundamental questions raised by the protesters in 1996: Who gets to make decisions about an intersex child’s body? Why should bodily differences be treated as abnormalities requiring correction? And how do we protect children from the stigma and harmful practices which flow from society’s expectations of what male and female bodies should look like?
Intersex persons are born with sex characteristics, including reproductive anatomy, hormones or chromosomes, which do not fit typical definitions of male or female bodies. These variations are part of human diversity. Some are apparent at birth, while others become evident later in life. Yet intersex variations continue to be surrounded by misunderstanding, stigma and discrimination.
For intersex children, the consequences can be particularly severe. Parents and guardians may be confronted with difficult decisions shortly after their child’s birth, often without adequate information or support. In some instances, medical interventions are presented as necessary to “normalise” a child’s body, even where there is no urgent medical need. Such interventions can have irreversible physical and psychological consequences, denying children the opportunity to participate in decisions about their own bodies.
According to the United Nations, between 0.05% and 1.7% of people worldwide are born with intersex traits. In a 2018 State Report submitted to the United Nations Committee on Social, Economic and Cultural Rights, the South African Government acknowledged that it did not keep statistics on surgeries performed on intersex infants and children. This raises questions about how the government monitors and protects their rights. Behind these concerns are the lived experiences of people such as Daniela Truffer, a Swiss intersex rights activist who underwent genital surgery as an infant and again as a child. Reflecting on her experience, she stated: “I was mutilated. I have spent my life in fear, pain and shame. I would have liked to decide for myself.” Her testimony echoes the demands made by the protesters in Boston 30 years ago and reinforces the importance of the SAHRC’s pamphlet.
Against this backdrop, the SAHRC developed its guide. Just as the activists of 1996 challenged the assumption that intersex bodies needed to be surgically altered to meet social expectations, the pamphlet encourages parents and guardians to understand intersex variations without treating them as conditions that must necessarily be corrected. The guide does not seek to interfere with professional medical advice or with parents’ and guardians’ decisions. The SAHRC, as guardian of human rights, seeks to assist parents and guardians in exercising informed consent. The SAHRC’s campaign is against non-consensual “normalisation” surgeries.
The guide explains intersex variations and intersex genital mutilation, highlights alternatives to invasive or irreversible medical procedures, and addresses the cultural and religious stigma that can accompany the birth of an intersex child. In doing so, it seeks to replace secrecy with information, shame with understanding, and decisions driven by social expectations with those grounded in children’s rights.
Not all transgender people feel the need to undergo gender-affirming treatment. But for those who do, the incongruence between their physical and real genders can lead to gender dysphoria — a conflict between their physical gender and the gender with which they identify. (John McCann/M&G)
Importantly, protecting intersex children does not mean denying them necessary healthcare. Rather, it requires distinguishing medically necessary treatment from interventions undertaken primarily for cosmetic or social reasons. Medical decisions must be guided by necessity, the child’s best interests and respect for their evolving capacity to participate in decisions affecting them.
South Africa’s Constitution provides a compelling foundation for this approach. It guarantees the rights to equality, dignity and bodily and psychological integrity. Section 28 further requires that a child’s best interests be of paramount importance in every matter concerning the child. These protections cannot be meaningful if children are denied autonomy over their bodies simply because their sex characteristics challenge established social norms.
The central pillars of Intersex Awareness Week in 2026 – ending secrecy and shame, advancing bodily autonomy, stopping non-consensual medical interventions on infants and children, and promoting legal recognition and self-determination – remind us that the struggle extends beyond medical practices. It also concerns how families, communities, healthcare institutions and the law recognise and respect intersex persons as seen in Caster Semenya’s successful litigation before the European Court of Human Rights. This issue extends to the regulations and policies of private companies and institutions, which must also be held accountable for respecting human rights. This is why the SAHRC successfully applied to intervene in this case, demonstrating that the 2019 International Association of Athletics Federations regulations had a discriminatory effect on the intersecting grounds of race, sex, and gender.
The South African public health sector does not adequately protect, promote, respect and fulfil the rights of intersex persons. As the Commission for Gender Equality reported in 2024: “The public health sector's insufficient provision of affirming medical care for intersex individuals, alongside the absence of national policy guidelines, exacerbates the challenges faced by this community. Additionally, the prevailing sex-binary framework within healthcare alienates intersex individuals and highlights a lack of awareness among public health officials.”
The SAHRC’s pamphlet is therefore more than an informational resource. It is a practical contribution to advancing the demands intersex activists made 30 years ago. Its significance lies in empowering parents and guardians to make informed decisions that protect their children’s dignity, bodily autonomy and future capacity to exercise self-determination.
Thirty years after intersex activists challenged the medical establishment in Boston, the question is whether we have meaningfully responded to their demands. The SAHRC’s guide offers an important step towards doing so. But its promise will only be realised when intersex children are allowed to grow up free from shame, unnecessary bodily interventions, and the expectation that their bodies must be altered to secure society’s acceptance.
The words of Sally Gross, an anti-apartheid activist, human rights champion and founder of Intersex South Africa, spoken in 2011 still ring true today: “Much needs to be done to educate the public about intersex. They need to learn that it is part of the fabric of human diversity and not a threat, a rights issue and not pathology. Teachers and curricula need content about it. Medical students need input from a medical-ethics and human rights perspective. Religious leaders need to be educated about it to educate others. Research about the prevalence of intersex in SA, and about attitudes and practices, is needed. We need legislation to limit and regulate non-consensual genital surgery on the intersexed, and legislation must be screened with implications for the intersexed in mind.”
Professor Tshepo Madlingozi is a commissioner of the South African Human Rights Commission. Thandeka Khoza-Jali is a research advisor of the South African Human Rights Commission.