Intersex Awareness Day: 30 years after the first protest, why are intersex people still waiting for change?
Monday 26 October 2026 marks 30 years since the first public intersex protest was held in Boston, which we mark each year as Intersex Awareness Day. We have three decades of awareness, from intersex people, families, academics and allies. Despite this, significant improvements are needed in healthcare, human rights and public knowledge.
Intersex people are born with sex characteristics (including chromosomes, hormones, gonads or genital anatomy) that do not fit typical definitions of male or female. While increasingly included as the “I” in LGBTQI+, intersex is not a sexual orientation or gender identity. It is a diverse set of bodily variations, and people use different descriptions, including intersex, variations in sex characteristics (VSC) and specific diagnostic terms.
For this year’s Intersex Awareness Day, an open letter to the UK Government brings together intersex people, community organisations, researchers and allies. It welcomes the Government’s publication of its long-delayed report on experiences of life in the UK, but argues that the evidence now demands urgent action rather than another round of consultation.
The government report
The government’s report, Variations in sex characteristics (VSC): experiences of live in the UK for people with VSC and those who care for them, published earlier this summer is significant. Based on responses to a 2019 call for evidence, it records experiences of diagnosis, medical interventions, education, employment, public services and birth registration. The respondents were self-selecting and the sample was small, so the findings cannot represent everyone with variations in sex characteristics. The report is published with a disclaimer that it is from a previous administration and therefore not linked to current policy or legislation. But its limitations do not make the testimony unimportant.
The report documents issues that intersex individuals, organisations and academics have been describing for decades now. For example, among respondents who had undergone medical interventions related to their variation, 65% said they had not been able to provide informed consent, and 83% said they had not had appropriate access to psychological support afterwards, while 57% said they had not had appropriate information and advice from healthcare professionals.
The effects extend beyond medical settings. Almost three-quarters of respondents said their variation had affected their school life. More than half said it had affected their experience of work, and half said it had affected their use of sport and leisure services. Fear of negative reactions and assumptions that healthcare professionals would not understand their variation were barriers that had prevented around six in ten respondents from seeking healthcare.
These findings should not be treated as surprising new discoveries. Dr David Griffiths, Senior Lecturer in Sociology, has examined the history of intersex medicine, classification and public understanding in Britain. His work has shown how surgical interventions have historically been justified not through medical need but social ideas about normal bodies, and assumptions about heterosexuality. Not only this, but apparently neutral medical categories can shape people’s identities, relationships with clinicians and access to care, and how a focus on future medical and scientific certainty can actually defer actions in the present. Recently he has been working with colleagues asking questions about how intersex people tell their stories, how stories lead to awareness, and how awareness might lead to action.
Left to right: Prof Mitchell Travis (University of Leeds), Dr David Griffiths (Surrey University), Prof Fae Garland (University of Manchester), Dr Megan Walker (Halsden Centre) and Dr Charlotte Jones (Swansea University),).*
Surrey’s intersex research
Surrey has a long connection to intersex scholarship and activism. In 2016, David Griffiths co-organised the University’s Institute of Advanced Studies symposium After the Recognition of Intersex Human Rights with Professor Peter Hegarty, now at Open University. The event brought intersex activists, academics and clinicians to Surrey to ask what should happen after international bodies had begun recognising intersex human rights. Ten years later, many of the central questions remain unresolved: how can lived experience shape healthcare? How should children be protected from interventions that can wait? And how can research support change rather than simply document harm?
Following the publication of the government’s report, a group of intersex people/people with VSC along with allies who work and research in this area have published an open latter, arguing that the government now has enough evidence to act. Its priorities include a named minister responsible for co-ordinating policy, a strategy and timetable for implementing Council of Europe recommendations, stronger protections against medically unnecessary interventions, and an independent public inquiry into historical and current practices.
The letter is not a claim that every person with variations of sex characteristics shares the same experience or political position. Intersex communities are diverse. It is a collective request that bodily autonomy, knowledge and testimony should be treated as central to policy-making.
Thirty years after the first protest, the problem is not a lack of awareness or lack of evidence. It is the repeated postponement of responsibility. Intersex Awareness Day 2026 could be a turning point, moving beyond awareness to work together towards real change.
Related sustainable development goals
