Intersex people are born with sex characteristics that don’t fit medical or social norms for female or male bodies. Many intersex traits can also be determined prenatally. Infants, children and adolescents born with intersex bodies have been treated not on the basis of evidence but on the basis of clinical feelings and beliefs and narrow social norms. These include ideological beliefs that girls and boys need to look a particular way or that they need to look a particular way in order to grow up to be “normal”, “productive”, “functional”, heterosexual and cisgender [1–3]. The consequences of such interventions and associated examinations include a need for lifelong hormone replacement, repeat surgeries, lack of sexual function and sensation, incorrect gender assignment, and trauma [4].
There is neither clinical consensus nor clinical evidence to support current practices [5]. Clinical bodies face multiple challenges in constructing evidence to support clinical practices. A deliberate historic practice of concealing diagnostic information [6] means that most intersex people lack information about their bodies that can help them manage their health let alone make them reachable to clinical researchers. Legacies of poor treatment, trauma and medical display mean that many individuals will not engage with clinical services [5]. Service provision is variable and poor, and even where pediatric and adult services exist, the transition between those services is fraught. Most damningly, research to ascertain the impact of forced practices reveals human rights violations. In some cases, as in attempts to gauge the post-surgical clitoral sensitivity of children, clinical research practices themselves violate human rights.
Multidisciplinary teams may provide an audience for surgeons [13]; they may silence or ostracise dissenting internal voices [14]. They propose that techniques have improved rather than addressing the more fundamental questions of necessity and personal consent. Clinicians educate parents, presenting surgery as a positive solution. Timmermans and others describe how decision-making is steered “by strategically deploying uncertainties”; instead of being patient-centered, care is parent-centered. They comment, “the profession has been able to selectively appropriate challenges to its jurisdiction” [11].
Clinical research has been cherry-picked where it confirms clinical biases, while the voices of yesterday’s patients – through 20 years of testimony are dismissed as relating to “obsolete” practices [3,7]. Community-based participatory research, admittedly subject to some of the same constraints, has been dismissed as political and unrepresentative, as if clinical studies are neither of these[8,9]. Community development has been slow, hampered by resource constraints, and the injustices of silence and the legacies of clinical practices.
Clinicians have become purveyors of vague assurances of change, listening to patient concerns but without evidence of action[10–12]. Clinicians maintain practices through a lack of transparency and accountability: change cannot be ascertained when both historic and current practices are poorly disclosed.
A selective appropriation of challenges to medical jurisdiction over intersex bodies can also be seen in boundary disputes about whether or not a specific variation is intersex is deployed strategically to maintain clinical authority over “disordered” girls and boys. Attention to legal reforms, predominantly focused on identity recognition, has been selective. The implications of a legal case in 1979 that annulled the marriage of an intersex man on the ahistorical basis that he was a hermaphrodite were ignored, but this was before the existence of an intersex human rights movement [15]. A case reported subsequently in 2003 prompted clinicians to differentiate between biological characteristics and identity labels and reassert clinical authority over bodies with “disorders of sex development” [16]. but this too has been selective: a clinical desire to construct normative identities persists [17]. Today, clinicians who work for the IAAF say that third-sex categories exist because intersex people exist, and women with intersex variations who refuse ‘treatment’ should compete in them, or as men, or not at all [18].
In the face of these challenges, and for more than 25 years, intersex human rights defenders have documented and presented evidence of harm and called for change. Friday 26 October marks Intersex Awareness Day; the event commemorates the first public demonstration by intersex people and allies in 1996, prompted by their exclusion from a clinical event [23,24].
In the years since, guidelines and statements calling for change to clinical practices have been published by clinical bodies and institutions around the world [19], such as Physicians for Human Rights [20] and the Australian Medical Association [21]. These are significant and necessary steps forward, but there is no evidence to suggest that they have impacted clinical practices; indeed, there is evidence they are disregarded. Self-regulation has failed. Malta was the first country to enact reforms to protect the rights of intersex people in the context of medical interventions[22]. This Intersex Awareness Day, intersex human rights defenders around the world will be calling for action.
Today, we make an international call to question the current politics of evidence and their harmful consequences for intersex people around the world. We make this call: where is the evidence? #IAmTheEvidence
REFERENCES
[1] Littlefield A. Intersex People Want to End Nonconsensual Surgeries. A California Resolution Is Their ‘Warning Shot.’RewireNews 2018.
[2] Carpenter M. The human rights of intersex people: addressing harmful practices and rhetoric of change. Reproductive Health Matters 2016;24:74–84. doi:10.1016/j.rhm.2016.06.003.
[3] Carpenter M. The “Normalization”of Intersex Bodies and “Othering”of Intersex Identities in Australia. Bioethical Inquiry 2018:1–9. doi:10.1007/s11673-018-9855-8.
[4] Cabral Grinspan M, Carpenter M. Gendering the Lens: Critical Reflections on Gender, Hospitality and Torture. Gender Perspectives on Torture: Law and Practice, Center for Human Rights & Humanitarian Law, Washington College of Law, American University; 2018
[5] Lee PA, Nordenström A, Houk CP, Ahmed SF, Auchus R, Baratz A, et al. Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care. Hormone Research in Paediatrics 2016;85:158–180. doi:10.1159/000442975.
[6] Chase C. Surgical Progress Is Not the Answer to Intersexuality. Journal of Clinical Ethics 1998;9:385–92.
[7] Baratz AB, Feder EK. Misrepresentation of Evidence Favoring Early Normalizing Surgery for Atypical Sex Anatomies. Archives of Sexual Behavior 2015;44:1761–3. doi:10.1007/s10508-015-0529-x.
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[9] Carpenter M. The ‘normalisation’of intersex bodies and ‘othering’of intersex identities. In: Scherpe J, Dutta A, Helms T, editors. The Legal Status of Intersex Persons, Cambridge, England: Intersentia; 2018, p. 445–514.
[10] Carpenter M. Intersex Variations, Human Rights, and the International Classification of Diseases. Health and Human Rights 2018;20.
[11] Timmermans S, Yang A, Gardner M, Keegan CE, Yashar BM, Fechner PY, et al. Does Patient-centered Care Change Genital Surgery Decisions? The Strategic Use of Clinical Uncertainty in Disorders of Sex Development Clinics. Journal of Health and Social Behavior
[12] Human Rights Watch.“I Want to Be Like Nature Made Me.”2017.
[13] Lohman S, Lohman E, Davis G. Raising Rosie Our Story of Parenting an Intersex Child. London: Jessica Kingsley Publishers; 2018.
[14] Bonobo3D. Paediatric Surgeon Mika Venhola on INTERSEX. 2013.
[15] Finlay HA. Sexual identity and the law of nullity. Australian Law Journal 1980;54:115–26.
[16] Meyer-Bahlburg HFL, Migeon CJ, Berkovitz GD, Gearhart JP, Dolezal C, Wisniewski AB. Attitudes of Adult 46,XY Intersex Persons to Clinical Management Policies. The Journal of Urology 2004;171:1615–9. doi:10.1097/01.ju.0000117761.94734.b7.
[17] Hughes IA, Houk C, Ahmed SF, Lee PA, LWPES/ESPE Consensus Group. Consensus statement on management of intersex disorders. Archives of Disease in Childhood 2006;91:554–63. doi:10.1136/adc.2006.098319.
[18] Karkazis K, Carpenter M. Impossible “Choices”: The Inherent Harms of Regulating Women’s Testosterone in Sport. Journal of Bioethical Inquiry 2018. doi:10.1007/s11673-018-9876-3.
[19] Knight K. Medical Experts Call to Defer Unnecessary Intersex Surgeries. Human Rights Watch 2018. https://www.hrw.org/news/2018/10/12/medical-experts-call-defer-unnecessary-intersex-surgeries(accessed October 12, 2018).
[20] Physicians for Human Rights. Unnecessary Surgery on Intersex Children Must Stop 2017.
[21] Australian Medical Association. AMA Position Statement Sexual and Reproductive Health 2014. 2014.
[22] Malta. Gender Identity, Gender Expression and Sex Characteristics Act. 2018.
[23] Holmes M. When Max Beck and Morgan Holmes went to Boston. Intersex Day 2015.
[24] Beck M. Hermaphrodites with Attitude Take to the Streets. Intersex Society of North America n.d. http://www.isna.org/books/chrysalis/beck(accessed November 9, 2014).