Narratives of Resistance: Ethics, Expertise, and Co-Production in the Intersex Rights Movement

Abstract

The medical treatment of people with innate Variations of Sex Characteristics (VSC) and intersex individuals remains a contested ethical field, where personal narratives have emerged as strategic and epistemological tools. This article examines how such narratives challenge entrenched medical authority, resist pathologizing models of care, and shape evolving legal and ethical frameworks. Using a reflective, interpretive approach grounded in thematic analysis of publicly available cases, we trace narrative interventions across two domains: as medical evidence in clinical contexts and as testimony in policy and legal advocacy. Examples include public protest, contested collaborations with medical professionals, and participation in legislative debates. These accounts not only document the harms of non-consensual medical interventions but also reconfigure definitions of legitimate knowledge, positioning lived experience as counter-expertise. In doing so, they disrupt traditional hierarchies of authority and contribute to the co-production of alternative visions for intersex healthcare and rights. While narrative mobilization can catalyze significant institutional change, it also entails emotional and ethical burdens for those repeatedly called upon to share their experiences. We argue that storytelling is not merely an accessory to reform but a foundational mechanism for advancing medical ethics, influencing policy, and expanding human rights protections.

1. Introduction

Medical interventions on minors with Variations of Sex Characteristics (VSC) and intersex individuals are a site of open ethical controversy (Chase 1998; Holmes 2002; Carpenter 2016). For decades, clinical protocols have prioritized early surgical and hormonal interventions aimed at aligning bodies with binary gender norms (Dreger 1998). These procedures, typically performed in infancy or early childhood without direct informed consent, have been critiqued for violating bodily autonomy and causing long-term psychological and physical harm (Karkazis 2008). Despite growing consensus among human rights organizations that non-consensual “normalizing” surgeries constitute a form of medical violence (Ghattas 2019; UNOHCHR 2019; Bauer et al. 2020), resistance to reform from within medical institutions persists. At the heart of this contested terrain lies a struggle over epistemic authority: who is recognized as having the legitimacy to speak to the fate of intersex bodies, and on what grounds?

Intersex and VSC are umbrella terms for individuals born with physical sex characteristics that do not fit typical binary medical and/or social definitions of male or female (OHCHR 2015). Sex characteristics include chromosomes, gonads, hormones, genitalia, reproductive organs, and secondary sex characteristics (such as body hair distribution). In 2017, activist Miriam van der Have proposed a social definition of intersex as “the lived experience of the social-cultural consequences of being born with a body that does not fit the normative social constructions of male and female” (Van der Have 2017). Terminology and the boundaries of inclusion in this field remain fluid and contested (see Griffiths 2018). ‘Intersex’ is commonly used by activists, human rights bodies and social sciences. ‘VSC’ is also employed in these contexts to emphasize human rights concerns regarding bodily autonomy and sex characteristics (see Carpenter 2020), while encompassing individuals who may not identify as intersex, yet face analogous rights violations. ‘DSD’ (Disorders of Sex Development) and ‘dsd’ (differences of sex development) are instead used in medical contexts and by some patient associations since 2006 (Lee et al. 2016). These shifting terms underscore how legitimacy and authority shape not only treatment but also the very language used to describe intersex bodies. In this article we utilize the terminology found in the reviewed material.

Since the 1990s personal narratives, from autobiographical accounts, testimonies and co-produced research, have emerged as powerful instruments for challenging medical authority and reshaping ethical debate around intersex (G. Davis 2015b). Intersex individuals, activists and academic allies have increasingly mobilized narratives of lived experiences to critique dominant paradigms and to advocate for a less pathologizing, more rights-based approaches to care (Holmes 2002; Carpenter 2016). These narratives function as forms of counter-expertise, asserting legitimacy in spaces traditionally dominated by biomedical professionals. Far from being merely anecdotal, these narratives are central to a broader movement to reframe intersex embodiment not as a disorder requiring correction, but as a natural variation in human development deserving of care and protection (Holmes 2002; G. Davis 2015b). As in other arenas of identity politics and new social movements (Melucci 1980) narrative has been instrumental in transforming public awareness (J. E. Davis 2002). Across the globe, personal stories are mobilized to raise public awareness of Intersex experience and rights claims (e.g., Interface Project n.d.; Jones et al. 2016; OII Europe 2019; Inter and Alcántara 2023). The use of stories in social movements serve both to empower the storyteller, as well as envoke empathy in the public (Polletta et al. 2021). The use of personal narrative within social movements is not without its negative repercussions, and activists point to high levels of burnout due to this form of emotional labor (Cox 2011; Crocetti and Monro 2024).

Beyond raising public awareness of specific experiences and identities, narrative also functions as a strategic tool for advocating changes in clinical protocols and the legal frameworks that regulate them. In embodied health movements (EHMs), narrative and testimony have been mobilized to address intersectional gaps and abuses in medical care and research across diverse subjectivities (Epstein 1996; Sobnosky 2013). As Brown et al. note, EHMs “introduce the biological body to social movements in central ways… [and] typically include challenges to existing medical/scientific knowledge and practice” (Brown et al. 2004, pp. 54–55). Both individual testimony and movement narratives enact forms of evidence-based activism by positioning subjective experience as a legitimate body of ‘experiential knowledge’ (Arksey 1994; Borkman 1976). In doing so they frame those who give testimony as what Epstein (1995) refers to as ‘lay experts’, or, as Rabeharisoa and Callon describe, ‘experts in experience’ (Rabeharisoa and Callon 2002, p. 62).

This dynamic is particularly visible in intersex movements, where rights claims have centered less on civil rights and anti-discrimination frameworks and more on medical practice (Carpenter 2020). This article therefore addresses how narrative is strategically used to intervene in medical policy and advocate for legal protections. While a moratorium on surgery and the pursuit of legal repercussions has not been uniformly embraced across VSC and intersex movements (see Crocetti et al. 2020), we can note a public-facing shift to human rights framing has largely been a response to the continued failure of medical institutions to self-reform (Bauer et al. 2020). As a representative of the Council of Europe noted during the 2025 Intersex Insights roundtable (Prandelli et al. 2025), legal protections are particularly valuable because they persist even as dominant social attitudes or regimes change. South African activist Crystal Hendricks (2025), in her keynote at the same conference, emphasized the importance of shifting social, medical and legal perspectives all together. Hendricks observed that practitioners continue to exploit loopholes in existing human rights provisions, a phenomenon Georgiann Davis and Erin Murphy describe as the creation of “states of exception” (Davis and Murphy 2013). Pressure from increased social awareness of intersex issues helps close this loophole. Hendricks (2025) posed a central question for this article: “How do we shift people’s hearts and minds?”.

In response to this question, the first part of the article looks at how narrative can function as medical evidence; that is, as a form of data that challenges or complements clinical knowledge. Drawing further on the concept of “experts in experience” and “evidence based activism” in medical settings (Rabeharisoa et al. 2014), we examine how intersex narratives operate as tools of epistemic resistance and as catalysts for institutional change, both within and beyond the medical sphere. The recognition of experiential knowledge reflects broader shifts in biomedicine and health-related knowledge production (Conrad 2005), where patient perspectives are increasingly considered vital to ethical and clinical deliberation. Nevertheless, institutional resistance persists, in part because dominant models of authority continue to prioritize biomedical expertise over data produced by patients or individuals outside of formal health services.

The second part of the article investigates the role of testimony in policy and legal advocacy, showing how narrative is strategically deployed to shape legislation, influence court rulings, and inform human rights frameworks. Outlining the development of human rights framing and the pursuit of legal protections, we investigate how testimonies disrupt conventional hierarchies of expertise and contribute to the co-production of ethical standards. In doing so, they reconfigure the power relationships between medicine, law, and lived experience.

This analysis is supported by a brief review of the historical context of the ethical controversy, a discussion of the article’s methods, and a summary of its theoretical framing. Drawing on InterAction for Health and Human Rights Australia’s Our Theory of Change (InterAction for Health and Human Rights 2024; Carpenter 2024b), the article highlights narratives that mobilize personal testimony as a form of epistemic authority and as alternative visions of bodily diversity grounded in rights, dignity, and autonomy. Narrative strategies act against misinformation, disinformation and bad practices. They do so through evidence and research coupled with community development, capacity building and advocacy. A central goal is the regulation of medicine.

Ultimately, we argue that narrative is not merely a supplementary tool, but a foundational mechanism in the ongoing struggle to transform the ethical and medical treatment of intersex people. By legitimizing the voices of those most directly affected, narrative-based advocacy advances not only medical ethics in this field, but also the broader cause of human rights.

2. Background: Historical Context and Ethical Controversies

The history of intersex medical treatment includes contested ethical practices and shifting understandings of sex, gender, and bodily autonomy. From the 1950s onward, the dominant medical approach to intersex variations was based on the “Optimal Gender of Rearing” (OGR) model, which advocated for early surgical and hormonal interventions to align bodies with binary gender expectations (Dreger 1998). These procedures were often conducted without the informed consent of the parent until the 1990s (Karkazis 2008), and currently no protocol obligates the full informed consent of the directly involved minor (Gramc 2024a). These interventions are justified by assumptions about psychosocial benefit, despite the long-term harm they frequently cause.

Contemporary international medical practice is further shaped by the 2006 consensus statement (Lee et al. 2006) and its 2016 global update (Lee et al. 2016), both of which serve as best practice guidelines. While the original statements sought to reorient clinical care towards a ‘patient centred’ model including the establishment of multi-disciplinary teams that include phycologists (Lee et al. 2006), the 2016 global update highlights the persistence of unresolved controversies surrounding childhood surgery (Lee et al. 2016, p. 173). Although the 2016 global update promotes shared decision-making (SDM) frameworks (with parents, not the directly involved minors; see also Gramc 2024a), it simultaneously acknowledges a historical deficit in full diagnostic disclosure to parents. Central to these debates is the contested medical definition of what constitutes a ‘necessary’ intervention in this pediatric field, for which no clear medical consensus exists (Hegarty et al. 2021).

Persistent conflations of physical sex characteristics with gender identity and sexuality (Prandelli and Testoni 2020; also in the DSM-5, see Kraus 2015) further complicate clinical practice. Literature further points to limited psychosocial support for families (Ernst et al. 2018) and the absence of robust non-interventionist options in medical protocols (Liao et al. 2015), factors which sustain the prevalence of surgical interventions in childhood (Creighton et al. 2014). Astle et al. (2024) explains further that caregivers often have incomplete information about intersex, as well as on how to initiate positive communication on the subject with their intersex children. Epistemic injustice (Carpenter 2024a) here involves being denied the knowledge tools to understand one’s own embodied experience.

Notwithstanding these trends, certain pediatric teams have instituted protocol postponing irreversible treatment until the intersex individual can be involved (Knight 2020). Research also highlights the importance of non-stigmatizing information and support for young intersex people (Astle et al. 2024). However, Jones (2018) underscores the persistence of a fundamental dichotomy: while medical literature frequently legitimizes early interventions and privileges parental or institutional authority, the broader body of social research advocates autonomy-respecting approaches that emphasize the postponement of irreversible procedures until adulthood.

It is against this backdrop of contested medical authority and emerging critiques that the 1980s saw the emergence of variation-specific support and advocacy groups, often led by adults with VSCs who had experienced medicalization firsthand. While some of these variation-specific patient groups, such as those for individuals with Androgen Insensitivity Syndrome (AIS; see https://www.aissg.org/what-is-ais/#introduction_to_ais, accessed 15 August 2025), were critical of non-consensual medical protocols, others, particularly those led by parents or clinicians, often remained aligned with medical authority and prioritized parental rights (Crocetti et al. 2020).

The early 1990s marked a pivotal moment with the establishment of the Intersex Society of North America (ISNA) by Cheryl Chase. ISNA reframed medical interventions on intersex children as human rights violations, employing language that likened these practices to “genital mutilation” and “child sexual abuse” (Chase 1998, 2003). This rhetorical shift from medical to human rights framing reoriented ethical debates and placed intersex issues within the broader landscape of international justice (Carpenter 2016). Activism diverged along two axes: public-facing intersex human rights movements and private-facing patient advocacy groups, yet participation in these different movement strategies was often overlapping. While both shared concerns about medical harm, they differed in strategies and language. Patient associations often pursued improved care through collaboration with medical professionals, whereas intersex activists prioritized depathologisation and legal protections (Crocetti et al. 2020).

As internet access grew, individuals with VSCs began connecting virtually, discovering shared experiences of secrecy, trauma, and bodily violation (Preves 2005). Online networks enabled the articulation of what Karkazis (2008, p. 243) highlights as “lifesaving” peer contact. These spaces helped individuals reclaim narratives historically silenced by clinical discourse, and testimonies became a key tool in challenging medical norms (Preves 2003; Holmes 2009).

By the 2000s, intersex activism had grown into a global movement. Groups like OII (Organisation Intersex International), interACT, and Brújula Intersexual (to name just a few) engaged in coordinated international advocacy, lobbying international human rights bodies and pressuring for legal reforms (Bauer et al. 2020). The ethical controversies that define this history center on non-consensual surgery termed Intersex Genital Mutilation (IGM). Although procedures are still routinely performed on children too young to consent, activists and some medical professionals have criticised these interventions as unnecessary and harmful (Lee et al. 2006; Indig et al. 2021). The terminology used to critique these practices is itself a flashpoint: while activists invoke terms like “torture” and “inhuman treatment” (Crocetti et al. 2020), many clinicians reject such language as inflammatory, creating barriers to dialogue (Abrosimova et al. 2024).

Despite these tensions, there is notable consensus on key ethical concerns. Activists, patient advocates, and some medical practitioners agree with regards to the harms of unnecessary childhood treatments, the need for transparency in communication, and the importance of holistic, patient-centered care (Crocetti et al. 2020). Where these groups diverge instead is in the strategies proposed to resolve these harms. Activists may press for legislative change and a moratorium on surgeries, while patient advocates may focus on reforming clinical protocols. Both of these tactics, however, rely in some manner on narrative testimonies as key evidence for evoking change.

The human rights framing adopted by global intersex movements has yielded tangible policy outcomes. The Yogyakarta Principles Plus 10 (2017) recognized “sex characteristics” as a protected ground, affirming the rights to bodily integrity and physical autonomy (Carpenter 2020). National legislation in Malta 2015, Iceland 2019, Germany 2021, Greece 2022, Chile 2023 and elsewhere now prohibit non-vital surgeries on intersex minors (Garland and Travis 2023). Still, implementation challenges remain (Bartolo Tabone et al. 2024), and resistance from some medical stakeholders persists.

Alliances with LGBTQ+ groups have brought both visibility and tension. While intersex issues are often bundled into broader LGBTQ+ rights agendas, activists caution against conflating intersex embodiment with gender or sexual identity (Carpenter 2020; Crocetti and Monro 2024). Intersex-specific concerns, particularly in medical settings, can be sidelined in favor of civil rights framings that inadequately address bodily autonomy. The Darlington Statement (Australian and Aotearoa/New Zealand Intersex Community Organisations 2017) critiques superficial inclusion in LGBT+ frameworks that obscure the core issue of medical intervention without consent. Conversely, anti-trans legislation can reinforce the intersex ‘state of exception’ (Davis and Murphy 2013), by authorizing intersex exceptions to bans on childhood genital surgery (see HRW 2022; Katri and Sudai 2025).

Distrust between activists and medical professionals remains a significant site of contestation. Many activists remain unconvinced that voluntary reform from within the medical establishment is sufficient (Crocetti et al. 2020). Carpenter (2016) underscores ongoing tension over what is constitutes valid evidence, observing that two decades earlier Tiger Devore (Devore 1995) had already critiqued the “endless calls for more research” despite the accumulation of extensive subjective testimony. This enduring mistrust drives demands for legally binding protections and oversight mechanisms to prevent future harm, as well as calls for research agendas directly informed by stakeholder concerns and collaboration (Australian and Aotearoa/New Zealand Intersex Community Organisations 2017).

The historical and ethical trajectory of intersex medicine illustrates profound failures in respecting bodily autonomy, informed consent, and the rights of children. Intersex activism, through personal narrative, community organising, and human rights advocacy, has disrupted decades of clinical hegemony. It has reframed intersex medicine as an ethical and political issue, demanding justice and accountability. These efforts continue to shape policy, even as debates around terminology, strategy, and inclusion remain contested.

3. Materials and Methods

This article emerges at the intersection of the call for this Special Issue on Narrative Practices, Stories, Storytelling, Clinical and Community Work, and growing engagement with the concepts of epistemic and hermeneutical injustice within intersex studies (Fricker 2007; Bastien-Charlebois 2017; Merrick 2019; Aegerter 2022; Carpenter 2024a; Luzzi 2024; Suess-Schwend 2024). Scholarship has critically examined the systematic denial of individuals’ capacity to understand and articulate their embodied experiences, perpetuated through the medical pathologization of bodily diversity. Concurrently, the growing global intersex movement is challenging dominant biomedical epistemological paradigms. Central to this shift is the strategic use of narrative and the recognition of lived experience as a legitimate form of medical and ethical knowledge (Karkazis 2008; Feder 2014; Rabeharisoa et al. 2014). This intersection prompted reflection on the diverse ways in which narrative is mobilized in this field, across both private and public domains.

The article engages in a reflection on illustrative case studies, selected for their strategic relevance and symbolic resonance within intersex activism. Case studies were drawn from a range of sources including activist media, autobiographies, community reports, legal briefs, and academic articles, that demonstrate how participant narrative (Benford 2002) is used both as a tool of resistance and as a form of knowledge production. Narrative here is understood not merely as content but as practice, a mode of relational world-making, political engagement, and epistemic intervention. The analytic process involved close reading of the case materials, identification of narrative strategies, and reflection on how narrative strategies operate across contexts of advocacy, law, and medicine. Material was initially thematically analyzed (see Braun and Clarke 2014), and two recurrent patterns were identified as significant analytic categories: the mobilization of personal testimony as a form of epistemic authority; and the articulation of alternative visions of bodily diversity grounded in rights, dignity, and autonomy. The discussion of the illustrative examples, therefore, highlights the epistemological negotiations mobilized in fighting for bodily diversity and autonomy in this field.

The selected examples prioritize ‘successful’ narratives that showed not only how individuals and collectives contest pathologizing framings and articulate alternative, rights-based understandings of bodily diversity, but that also resonated with those in a position to enact change. This selection of narratives is necessarily influenced by a perspective from within intersex studies and advocacy. Privileging stories that have ‘successfully’ contested pathologization (while navigating the risks of co-optation; see Penney and Prescott 2016) is not a neutral choice but a deliberate political choice, situating this paper transparently within a critical scholarly tradition that seeks to challenge structural injustice. At the same time, this focus on ‘success’ cannot capture the full range of intersex activism, particularly the incremental and less-visible forms of resistance that do not immediately resonate with institutional actors.

Therefore, the cases chosen are all cases in which hearts and minds were in fact changed on some level. They are certainly not the only cases that have resonated with individuals and institutions in positions to enact change, but they are representative of types of narrative strategies that have been successful in some manner in these arenas. It must be acknowledged as well that for every success, there are years of backbreaking work that remain invisible, as well as ‘less successful’ narratives that instead do the slow work of chipping away at hegemonic structures.

New interviews or testimonies were not solicited in order to both foreground exemplary cases and to respect the emotional and temporal labor often demanded of intersex activists and community members. Instead, the analysis draws on a publicly available body of narrative forms of activism that have been mobilized in diverse contexts to reshape medical, ethical, and policy imaginaries in this field.

Finally, the analysis was guided by frameworks such as InterAction for Health and Human Rights Australia’s Our Theory of Change (InterAction for Health and Human Rights 2024; Carpenter 2024b), which provides a lens for tracing the multi-level strategies and obstacles through which intersex communities challenge institutionalized harm. The model identifies shifts in narrative, practice, and policy as interdependent and mutually reinforcing, making it especially relevant to this inquiry.

4. Personal Narratives as Medical Evidence

In traditional biomedical frameworks, medical knowledge is produced through clinical trials, expert consensus, and diagnostic categories rooted in anatomical, physiological, and genetic data. Within this epistemological structure, personal experience, particularly when subjective or affective, may be dismissed as anecdotal or irrelevant (Timmermans and Berg 2003). The intersex rights movement and VSC variation specific groups strategically mobilize first-person testimony to challenge these hierarchies of knowledge production. Intersex individuals, drawing from their lived experiences of medical intervention, have increasingly positioned themselves not merely as patients but as epistemic agents. Their narratives function as a form of counter-expertise that interrogates the assumptions, methods, and ethics of conventional intersex medical care.

Narrative is a powerful tool across social movements, and medical activism and public health (Polletta 2022). Beyond issues of activist burnout and the emotional labor of using one’s own narrative of trauma as a tool for social justice (Cox 2011), there are also issues around narrative control. Benford (2002) reflects on the crafting of unified messages within movements, and the exclusion of narratives that destabilize this unity. Tensions between groups led by directly involved individuals and those led by parents and/or doctors speak to these issues of narrative control.

In this epistemological struggle, the risk of co-optation of movement narratives without relevant systemic change appears to create the backbone of issues around narrative control. As Carpenter (2020) argues, discussions of intersex rights that fail to address bodily autonomy and medical harm in childhood do not impact the rights issues identified as central to the movement. Penney and Prescott (2016) describe how institutions may adopt movement ‘buzzwords’, selectively embrace less threatening aspects of movement rights claims, or even appropriate personal narratives in manners that deviate from movement intent. Therefore, using narrative with the aim of meaningfully impacting healthcare policy is a complex process of establishing and directing epistemic agency.

Building on these tension, this section explores how intersex narratives seek to be reframed as a valid form of medical evidence. Baratz and Karkazis (2016) highlight the “moral imperative” for medical practitioners to listen to intersex individuals, indicating that in “dismissing these individuals’ experiences…we deny their humanity” (ibid, p. 41). In fact, activist Laura Inter (2016) asks: “they [doctors] study medicine to help people heal, but how can they do this if they do not listen to us?” (p. 13). Intersex individuals’ stories contest the clinical rationale behind early surgical intervention and illuminate the long-term harms that often go undocumented in formal medical records. The use of narrative as a form of data production redefines what counts as valid knowledge in clinical debates and contributes to shifting ethical norms within medicine and health policy. This shift reflects broader transformations in medical authority, as described by Peter Conrad (2005), who identifies patient advocacy groups as newly influential “engines of medicalization.” Jenkins and Short (2017), however, highlight how within VSC social health movements, actors actively resist pathologization, seeking de-medicalization. These groups, once marginal to medical decision-making, have gained cultural and institutional authority to define what constitutes legitimate treatment, harm, and recovery. In the case of intersex advocacy, patient groups have used their collective experiences not only to resist pathologization but to reconfigure the ethics of care itself. Testimony becomes a mode of activism, evidence, and political pressure; driving changes in policy, institutional practice, and public consciousness.

Across diverse national contexts, behind the closed doors of medical team meetings, hospital ethics committees, and training seminars, variation-specific advocacy groups and intersex activists have presented personal testimony that has contributed to notable shifts in the perceptions of the medical treatment of individuals with VSC. These interventions, whether formal presentations, semi-structured dialogues, or informal consultations, have become critical mechanisms for introducing experiential knowledge into medical spaces that have historically privileged clinical authority and pathologising frameworks. While the epistemic status of personal narrative remains contested in many biomedical settings, its moral and rhetorical force has compelled practitioners to reassess diagnostic assumptions, surgical protocols, and models of patient communication (Epstein 1996; Crocetti et al. 2020). The last update to global guidelines (Lee et al. 2016) highlights the continued contested nature of protocols, as well as the resulting importance of involving Peer Support Groups (PSGs) directly.

In Contesting Intersex: The Dubious Diagnosis (G. Davis 2015a), Georgiann Davis critically analyzes how intersex individuals have used personal testimony to challenge the dominance of medical authority and reshape both public discourse and clinical practice. Davis argues that intersex advocacy, particularly through sharing lived experiences of trauma, secrecy, and non-consensual surgeries, has been instrumental in questioning the diagnostic framework of “Disorders of Sex Development” (DSD). The introduction of the term DSD in 2006 (Lee et al. 2006) re-medicalized intersex variations under a pathologizing label, stimulating much debate about what describing intersex variations as disorders does in medical settings and the society at large (G. Davis 2014). Davis describes a shift in activist tactics in the USA from collective confrontation to ‘contested collaboration’ with medical professionals (G. Davis 2015a), while in Europe there has also been a shift to human rights framing and testimony (Crocetti et al. 2020).

Protest, Contested Collaboration, Co-Production

In the following we outline three examples in which testimony was employed to enact epistemological change in medical settings. These cases are illustrative rather than exhaustive as testimony is mobilized in myriad ways to promote change in these settings. Each example highlights how personal testimony functions as a form of epistemic authority while simultaneously articulating visions of bodily diversity grounded in human rights. The first example represents a hybrid use of public protest and private negotiation that resulted in policy shifts at Lurie Children’s Hospital in Chicago. The second reflects what G. Davis (2015a) describes as ‘contested collaboration’, in which dialogue between ‘patient’ activists and medical allies promotes clinical and epistemological change. This discussion draws on previously documented movements with the Italian patient group AISIA (Crocetti 2013; Crocetti et al. 2021). The third example focuses on negotiated collaboration, in the form of the co-produced medical research: A national study on the physical and mental health of intersex adults in the U.S (Rosenwohl-Mack et al. 2020).

In Nobody Needs to Know (Pagonis 2023), intersex activist and writer Pidgeon Pagonis offers a deeply personal and politically charged account of the events leading up to the apology and provisional suspension of medically unnecessary intersex surgeries at Lurie Children’s Hospital in Chicago (Lurie Children’s Hospital of Chicago 2020). Pagonis recounts their own experiences of non-consensual surgeries performed during childhood and the lifelong emotional, physical, and psychological consequences that followed. Importantly, their story is situated within a broader collective effort by intersex activists (in particular Sean Saifa Wall of the Intersex Justice Project), allies, and human rights advocates who challenged dominant medical understanding of intersex as well as this specific hospital’s practices. Through strategic organizing, media engagement, and public protest, this network transformed individual testimony into a form of collective epistemic and public pressure.

The road to Lurie’s apology was paved by years of multi-layered activism. Pagonis participated in a private meeting with the specialized medical team, seeking to convey the human cost of these surgeries in terms that clinicians could understand. Alongside these private efforts, in 2017 activists staged the first public protests outside Lurie (IJP 2018), holding signs, giving testimony, and drawing media attention to what had long been a hidden practice. These visible demonstrations created a sense of urgency that could not be ignored and forced the hospital to respond publicly. In 2020, Lurie issued an unprecedented statement acknowledging the harm caused by its previous approach to intersex care and committing to a temporary suspension of surgical interventions that were not medically necessary.

This moment marked a significant shift in the role of narrative within medical discourse. The change at Lurie was not precipitated by new clinical trials or emerging biomedical evidence; it was driven by the accumulation of pressure, testimonies, and lived experience. However, public forms of narrative protest are not without cost, subjecting individuals to emotional labor while also potentially undermining their right to privacy. As Hans Lindahl, director of communications for the youth intersex organization InterAct notes “I think there’s a pressure that we almost have to tell these stories at this point in our movement in order to get people to listen” (Sosin 2020).

Not all national contests, however, have a significant number of activists who are willing to subject themselves to this level of public scrutiny, and therefore adopt more private-facing tactics. In a form of contested collaboration, the Italian patient groups have been instrumental in shifting aspects of care and national medical perspective largely through the cultivation of medical allies and testimony within training or consultation settings (Crocetti et al. 2021). Patient associations regularly send members to medical conferences to speak as experts of experience. These forms of ‘contested collaboration’, exemplify boundary-work in practice, where patients navigate the relational spaces between expertise, institutional authority, and lived experience to influence medical knowledge and practice (Gieryn 1983; Jasanoff 2004).

Between 2006 and 2009 members of the newly formed Italian AIS (Androgen Insensitivity Syndrome) patient association, AISIA, began inquiring whether any doctors in Italy could offer non-surgical vaginal dilation instead of invasive vaginoplasty (a procedure many had undergone as minors with traumatic consequences) (Crocetti 2013). One gynecologist, upon hearing of this demand, sent a junior colleague to London to learn dilation techniques used in intersex care. The doctor returned to Italy and announced that their clinical team could now provide dilation therapy as a valid, less-invasive option. This shift did not emerge from clinical trial data, but rather from patient-led advocacy and the testimonies of women who had endured harmful, unnecessary childhood surgeries.

Further impact came through the cultivation of medical allies, who advocate for systemic reform from within specialized teams. They called for the abandonment of early, non-consensual interventions and pushed for diagnostic transparency for minors as well. The impact of testimony is further explored by Italian psychologist D’Alberton (2010), who argues for the necessity of “progressive full disclosure” in DSD care. In his article “Telling Stories, Telling Lies”, based on collaboration with AISIA, D’Alberton critiques the entrenched culture of secrecy and clinical deception surrounding intersex diagnoses and treatments. He underscores that long-term harm is often exacerbated not just by surgical intervention but by the absence of truth and dialogue.

Activists and patient groups across the globe can attest to the small victories achieved through the ‘lifting up’ of experts of experience by institutionally recognized medical allies. However, many also experience progress fatigue or stalled overall reform, such as national suspension of harmful practices. Reliance on allyship enacts a form of ‘contested-collaboration’ particularly when robust allyship mechanisms, such as the acknowledgement of systemic bias and privileged identities, action orientation and comprehensive inclusion (Pietri et al. 2024), are lacking. Without careful attention, allyship may reproduce existing hierarchies, marginalize patient voices, or result in co-optation, illustrating that co-production is inherently relational, negotiated, and politically situated (Callon 1999; Jasanoff 2005).

We can recall Hendrick’s concern in the introduction that dialogues with medical allies do not always lead to actionable reform. Medical sources claim: “There is no evidence regarding the impact of surgically treated or non-treated DSDs during childhood for the individual, the parents, society or the risk of stigmatization” (Lee et al. 2016), contributing to a stalling tactic of requesting more data (Carpenter 2016). Yet experts of experience continue to give testimony regarding the harms related to these otherwise postponable procedures.

As a final example for this section, we shift our attention to the structuring of research that further shapes models of care. As Filipe et al. (2017) point out, the concept of co-produced healthcare has been increasingly mainstreamed, yet there are many different iterations of co-production of scientific knowledge (Jasanoff 2004), including co-design, co-evaluation, and co-implementation of either services or research (Brandsen and Honingh 2016). Due to historical ethical and epistemological gaps in research in this field (Bastien-Charlebois 2017; Mestre-Martínez 2024), ranging from medical stripping to gaps in long-term health research (Berry and Monro 2022), contested relations extend also to research environments. Activist consortiums have drafted guidelines for research with the intersex community (InterAction for Health and Human Rights 2019; InterACT 2023) that highlight the need for community consultation from the research design onward. These guidelines address both procedural aspects regarding respectful treatment, as well as directing research goals to the priorities of the community. Zeeman and Aranda (2023) posit that only through re-organizing relational entanglements and hierarchies, and therefore enabling co-produced research, can intersex health equity increase.

However, the majority of medical research in this field cannot be considered co-produced in the manner implied by the aforementioned guidelines (Gramc 2024b). The recent research project, A national study on the physical and mental health of intersex adults in the U.S (Rosenwohl-Mack et al. 2020), stands out not only for its scope, the first large-scale, community-informed study of intersex adults in the United States, but also for its methodology. Rather than treating intersex people solely as subjects of research, the study involved intersex stakeholders and community members as collaborators at every stage of the research process, from initial design to implementation and dissemination. This participatory approach marks a significant departure from traditional medical research, where intersex people have historically been excluded from shaping the questions asked about their own lives and have often been displayed in stigmatizing manners. Filipe et al. (2017) indicate that ‘successful’ co-production relies on the construction of relationships and communication, or in other words, Zeeman and Aranda’s (2023) re-organization of relational entanglements.

By centering intersex voices, the study was able to shift the research agenda away from long-standing medical preoccupations such as gender assignment, genital “normalization”, and/or assumed identity development toward the concerns that intersex people themselves identified as most urgent. These included chronic pain, access to affirming care, experiences of stigma and discrimination, and mental health distress. Research indicates intersex and VSC adults have difficulty accessing adequate health care (Berry and Monro 2022; Wang et al. 2023). The co-production model enabled the study to uncover patterns of unmet healthcare needs, trauma, and systemic barriers that would likely have remained invisible under a conventional clinical framework. This realignment of focus exemplifies how the inclusion of narrative, experiential knowledge, and community priorities can expand the very definition of what counts as evidence in health research.

The study also illustrates the broader epistemological shift that occurs when those who have traditionally been treated as passive objects of medical scrutiny are instead positioned as experts. Co-produced research such as this not only generates more relevant and ethical data, but also legitimizes the authority of individuals to speak about their own bodies, needs, and experiences. In doing so, it challenges the hierarchical structures of medical knowledge production and highlights the value of narrative and lived experience as forms of evidence that can, and should, inform both research and clinical practice.

5. Testimony as a Tool for Legal and Policy Transformation

Intersex rights have increasingly come to the fore within international human rights discourse, drawing the attention of global human rights bodies, ethical committees, and policy-making institutions (Ghattas 2019; Bauer et al. 2020). As Davis and Murphy (2013) argue, although intersex claims are grounded in existing human rights frameworks, the persistent medicalization of intersex bodies often creates a “state of exception”, a condition under which those very rights can be suspended or rendered inapplicable. Legal responses, therefore, must go beyond procedural reform to dismantle the underlying logic that legitimizes such exceptions. As Hendricks notes, (Hendricks 2025) narrative and testimony function as key tools in changing people’s hearts and minds, even within formal legal and policy settings.

Rights claims are frequently articulated through personal and collective narratives that expose the lived realities of medical harm, social erasure, and legal invisibility. In response, a growing number of states have introduced regulatory measures aimed at addressing the specific forms of human rights violations experienced by people born with VSC. These interventions take diverse legal and policy forms (Garland and Travis 2023), and are constantly evolving. A key early example remains Malta’s GIGESC Act (2015) which prohibits proxy consent for medical modifications of sex characteristics. Since then, protections have emerged across the globe: Taiwan’s Ministry of Health issued guidelines in 2018 that prohibit medically unnecessary and irreversible procedures on intersex children under the age of 12; the State Government of Tamil Nadu, India passed a Government Order to ban sex selective surgeries on Intersex infants in 2019; Kenya’s Children Act in 2022 imposes partial legal restrictions on surgical interventions on minors; the Australian Capital Territory’s 2023 legislation classifies such interventions as “Restricted Medical Treatments” (ASCARC 2013); and Chile’s Ministry of Health issued circular 15 (2023) prohibiting unnecessary and non-consensual surgeries on intersex children.

Recent landmark laws include Iceland’s 2019 Icelandic Gender Autonomy Act; Germany’s 2021 general ban on operations in children and adolescents with ‘variations of sex development’; Greece’s 2022 criminalization of intersex genital mutilation (IGM); and Spain’s 2023 prohibition on intersex genital modification practices without direct consent.

One of the earliest and most influential examples of intersex testimony in an international legal context occurred during the 61st session of the United Nations Commission on Human Rights (UNCHR) in 2005. At this hearing, Mauro Cabral, an Argentinian intersex and trans activist, delivered a powerful testimony recounting their experiences of non-consensual medical treatment, institutional silence, and psychological trauma. This marked one of the first formal introductions of intersex experiences into an international human rights forum, reframing medically imposed interventions as violations of fundamental rights. Cabral’s testimony helped catalyze broader recognition of intersex issues across multiple human rights mechanisms. The mobilization of testimony in collaboration with international human rights bodies opened numerous possibilities, including the eventual inclusion of ‘sex characteristics’ as protected attributes within the Yogyakarta Principles plus 10 document (Yogyakarta Principles Plus 10 2017; Carpenter 2020).

From the mid-2000s onward, aspects of the global intersex movement increasingly employed personal testimony within human rights body lobbying (Bauer et al. 2020). German groups such as IMeV and XY-Women built on this strategy, engaging human rights mechanisms like CEDAW and CAT by submitting reports that combined personal stories of trauma with legal analysis, ultimately securing the first Concluding Observations referencing intersex rights. The careful construction of NGO reports that integrating individual narratives of lifelong harm, evidence of state inaction, and human rights provided the basis for 1-min-long testimony from national intersex representatives at committee body country reviews. This narrative-supported advocacy led to landmark recognitions from treaty bodies including the CRC, CAT, and CRPD, with over two dozen UN verdicts explicitly acknowledging IGM as a serious human rights violation.

These successes underscored the power of narrative not only to inform but to transform legal understandings of intersex realities, positioning testimony as an indispensable tool in strategic human rights lobbying (Bauer et al. 2020).

As academic ally Nikoletta Pikramenou (Pikramenou 2024) describes, the passage of any protective law is grounded in a long history of activism and testimony. The Greek intersex movement, as described by Pikramenou, reflects a dynamic seen globally, where patient groups and public-facing activist attempt numerous strategies that center personal stories (both in private and public contexts) to support one other and change social perceptions of bodily diversity (Crocetti et al. 2020). Pikramenou highlights a national context, similar to that of Italy, where a limited number of activists feel safe providing public testimony. However, political and legal lobbying processes can provide protected spaces where testimony can be shared confidentially yet effectively.

For example, during the drafting of Greece’s intersex legislation, the bill was published online for public consultation, with five comments specifically addressing intersex issues. The parliamentary process also included a hearing for public testimony, during which Simeonidou, the mother of an intersex child, recounted her experiences of being advised to consider abortion and shared stories of intersex survivors of non-consensual medical interventions (Pikramenou 2024). Both the Prime Minister and the Minister of Health openly acknowledged how moved they were by the challenges described (Papaioannou 2022), explicitly noting the importance of emotional engagement in understanding the stakes for intersex children and their families (Pikramenou 2024). This approach reflected the deliberate strategy of Intersex Greece, which consistently paired personal narratives with scientific data to both educate the public and foster empathy, thereby leveraging narrative as a powerful tool for social and legal change. The changing of hearts and minds addressed by Hendricks (2025) demonstrates how narrative can generate space for empathy. However, as also noted, the requirement to share one’s story may also come with a heavy emotional toll, particularly when framed as one of the most ‘successful’ and therefore necessary methods (see Sosin 2020).

Across these diverse contexts, testimony operates as both revelation and resistance: it brings to light the concealed or normalized practices of medical violence, while simultaneously constituting new forms of political agency. By articulating the harms of non-consensual treatment in legal and public arenas, intersex individuals reframe personal suffering as collective injustice and compel legal systems to reckon with their role in upholding pathologizing norms. As such, testimony has become a central mechanism through which intersex rights are being codified, not only in law but in the broader cultural and ethical landscapes that law seeks to regulate.

6. Conclusions

This article has examined how personal narrative operates as a strategic and epistemological force within the intersex rights movement, seeking to transform society as well as medical practice and legal frameworks. By tracing how intersex individuals and advocacy groups deploy testimony in a range of contexts, from protest and clinical training to co-produced research and testimony for international human rights bodies, it becomes clear that narrative is not merely illustrative but constitutive of ethical and institutional change. Personal stories do more than challenge dominant biomedical paradigms; they actively reconfigure what counts as knowledge, who is recognized as an expert, and how policy and clinical ethics are formed.

Narrative practices, as explored here, function as a response to hermeneutical injustice: addressing the systematic silencing of intersex voices and experiences within both medical and legal discourses. Through the articulation of lived realities, intersex individuals reposition themselves as “experts in experience”, offering vital insights into the harms of pathologizing care models and the ongoing struggle for bodily autonomy and informed consent. This repositioning disrupts entrenched hierarchies of knowledge and opens space for co-production, where clinical and legal standards are reshaped through dialogue with those most affected. The examples discussed show how narrative shifts the ethical terrain: compelling hospitals to reconsider surgical protocols, prompting governments to draft protective legislation, and encouraging international bodies to issue human rights rulings. These transformations underscore the capacity of intersex testimony to make visible otherwise ignored harms and to demand justice where medical and legal systems have failed.

Narrative interventions take diverse forms: some are public and confrontational, others private and collaborative; some prioritize legal redress, while others aim for institutional reform from within. Across these strategies, the shared reliance on storytelling underscores its power as a moral, rhetorical, and political tool. Yet, as activists and scholars have noted, this form of engagement also carries emotional and ethical burdens. The repeated demand for testimony can lead to burnout, re-traumatization, or exploitation, particularly when institutions remain slow to enact meaningful change. Recognizing these dynamics is essential for ethical engagement and solidarity in both research and advocacy.

Therefore, we reflect that narrative is not an accessory to policy change or clinical reform in this arena. It is a foundational mechanism through which intersex people re-shape the dominant narrative, demand accountability, and co-produce alternative futures. As such, narrative must be treated not only as a communicative device but as a legitimate and necessary form of political knowledge production. Ensuring that this knowledge is respected, protected, and institutionally recognized remains central to advancing intersex justice.