Thirty years ago, on October 26, 1996, intersex activists protested against medically unnecessary cosmetic genital surgeries on intersex infants and children outside the American Academy of Paediatrics conference in Boston. The protesters challenged the medical practices and the secrecy and shame that enabled them. Today, as the world commemorates Intersex Awareness Week, the concerns that animated that historic protest remain relevant. The South African Human Rights Commission (SAHRC) has released a guide for parents and guardians of intersex children, addressing questions about decision-making, bodily differences, and protecting children from stigma and harm.
Intersex persons are born with sex characteristics that do not fit typical definitions of male or female bodies. These variations are part of human diversity, and some are apparent at birth, while others become evident later in life. However, intersex variations are often surrounded by misunderstanding, stigma, and discrimination. For intersex children, the consequences can be severe, with parents and guardians facing difficult decisions without adequate information or support. Medical interventions may be presented as necessary to "normalise" a child's body, even without an urgent medical need.
The SAHRC's guide responds to the same fundamental questions raised by the protesters in 1996. It encourages parents and guardians to understand intersex variations without treating them as conditions that must be corrected. The guide explains intersex variations and intersex genital mutilation, highlights alternatives to invasive or irreversible medical procedures, and addresses cultural and religious stigma. According to the United Nations, between 0.05% and 1.7% of people worldwide are born with intersex traits.
In 2018, 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. Daniela Truffer, a Swiss intersex rights activist, shared her experience of undergoing genital surgery as an infant and again as a child, stating that she was "mutilated" and had spent her life in fear, pain, and shame.
The SAHRC's campaign is against non-consensual "normalisation" surgeries, and the guide seeks to assist parents and guardians in exercising informed consent. Protecting intersex children does not mean denying them necessary healthcare, but rather 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 guarantees the rights to equality, dignity, and bodily and psychological integrity. Section 28 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. The South African public health sector does not adequately protect, promote, respect, and fulfil the rights of intersex persons, according to the Commission for Gender Equality's 2024 report.
Key points
- The SAHRC's guide aims to replace secrecy with information, shame with understanding, and decisions driven by social expectations with those grounded in children's rights.
- Intersex persons are born with sex characteristics that do not fit typical definitions of male or female bodies, and these variations are part of human diversity.
- The struggle for intersex children's bodily autonomy extends beyond medical practices to how families, communities, healthcare institutions, and the law recognise and respect intersex persons.
