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The Human Rights of Intersex People: Addressing Harmful Practices and Rhetoric of Change

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The Human Rights of Intersex People: Addressing Harmful Practices and Rhetoric of Change Reproductive Health Matters An international journal on sexual and reproductive health and rights ISSN: 0968-8080 (Print) 1460-9576 (Online) Journal homepage: http://tandfonline.com/loi/zrhm20 The human rights of intersex people: addressing harmful practices and rhetoric of change Morgan Carpenter To cite this article: Morgan Carpenter (2016) The human rights of intersex people: addressing harmful practices and rhetoric of change, Reproductive Health Matters, 24:47, 74-84, DOI: 10.1016/ j.rhm.2016.06.003 To link to this article: https://doi.org/10.1016/j.rhm.2016.06.003 © 2016 Elsevier Inc. Published online: 12 Jul 2016. Submit your article to this journal Article views: 2912 View Crossmark data Citing articles: 2 View citing articles Full Terms & Conditions of access and use can be found at http://tandfonline.com/action/journalInformation?journalCode=zrhm20 COMMENTARY The human rights of intersex people: addressing harmful practices and rhetoric of change Morgan Carpenter Founder, Intersex Day Project; Co-chair, Organisation Intersex International Australia Limited Correspondence: [email protected] Abstract: Intersex people and bodies have been considered incapable of integration into society. Medical interventions on often healthy bodies remain the norm, addressing perceived familial and cultural demands, despite concerns about necessity, outcomes, conduct and consent. A global and decentralised intersex movement pursues simple core goals: the rights to bodily autonomy and self-determination, and an end to stigmatisation. The international human rights system is responding with an array of new policy statements from human rights institutions and a handful of national governments recognising the rights of intersex people. However, major challenges remain to implement those statements. Human rights violations of intersex individuals persist, deeply embedded in a deliberate history of silencing. Rhetoric of change to clinical practices remain unsubstantiated. Policy disjunctions arise in a framing of intersex issues as matters of sexual orientation and gender identity, rather than innate sex characteristics; this has led to a rhetoric of inclusion that is not matched by the reality.This paper provides an overview of harmful practices on intersex bodies, human rights developments, and rhetorics of change and inclusion. © 2016 Reproductive Health Matters. Published by Elsevier BV. All rights reserved. Keywords: intersex, human rights, harmful practices, hermeneutical injustice, disorders of sex development Introduction In a repeated historical pattern,8 terms have chan- Intersex people are born with sex characteristics ged over the last century as clinical decision-makers that do not meet medical and social norms for have determined pre-existing language to be impre- female or male bodies.1 People with intersex var- cise or pejorative: that affected persons are iations are heterogeneous, with varied bodies, not hermaphrodites, not pseudo-hermaphrodites, sexes, and sexual and gender identities. Intersex not intersex, but disordered children whose bodies fi 9 10 traits comprise “at least 40 different entities of need nishing or disambiguating. which most are genetically determined”.2 Dis- Human rights violations take various forms. In closed by a doctor to a parent or an individual, places without accessible medical systems, aban- an “exact diagnosis is lacking in 10 to 80% of donment, infanticide, mutilation, and stigmatisa- ” 2 ’ tion of children and their mothers may occur if an the cases , including the author sownmedical 11 papers which include the terms hypogonadism, intersex trait is obvious. Recent cases include gynaecomastia and indeterminate sex. mutilation and murder of an adolescent in 12 Between 0.5 and 1.7% of people may have Kenya, and abandonment of an infant in 13 intersex traits.1 Numbers are vague, not only due Shandong, China. In places with accessible med- to diagnostic challenges and the growing impact of ical systems, human rights violations take place in genetic selection,3 but also stigma. The conse- medical settings, intended to make intersex quences of being born with intersex characteristics bodies conform to narrow social norms for are profound. Historicised as hermaphrodites, females or males.7 Lack of necessity, autonomy gods and monsters,4 visiblyintersexpeoplehave and valid consent mean that such “normalising” been subjects of infanticide and freak shows.5,6 interventions violate “rights to health and physi- Dan Ghattas remarks that, everywhere in the cal integrity, to be free from torture and ill- world, people with intersex bodies have been treatment, and to equality and non- deemed incapable of integration into society.7 discrimination”.1,14 74 Contents online: www.rhm-elsevier.com Doi: 10.1016/j.rhm.2016.06.003 M Carpenter. Reproductive Health Matters 2016;24:74–84 Medicalisation discovered to have intersex traits during routine tes- Intersex bodies became medicalised from the end of tosterone testing. They were subjected to “partial cli- the 19th century, alongside the medicalisation of toridectomies” and sterilisation under duress, to women’s bodies and of homosexuality. From the enable their return to competition.22 1950s, a new belief in the malleability of infants’ gen- Vaginal construction necessitates regular post- der identities brought an “optimal gender model” surgical dilation by the insertion of an instrument; into being: intersex children identified at or close to this may in some cases be experienced as rape.8 birth could be “normalised” by aligning their bodies, Follow-up examinations may include sensitivity test- gender roles and sex of rearing. Surgical limitations ing on minors,17 such as with a cotton bud or vibrator. meant that most affected intersex infants were Surgeries for hypospadias are typically underta- assigned female. “Successful” cases were heterosex- ken in infancy, despite evidence that outcomes are uals, who identified with their assigned gender.15 not determinable until adulthood.23 Construction Sex assignment of infants diagnosed at birth is and maintenance of a urinary tube may involve now typically based on visual inspection, genetic multiple surgeries with significant impact on and hormonal testing. While there are some sensitivity, high complication rates and particu- common rules, based on chromosomes and sensi- larly poor long-term outcomes, and even genital 8,23 tivity and exposure to androgens,16 social attitudes “resurfacing”. Evidence of the necessity of early 24 favouring male children can influence assign- intervention is lacking. ments in some regions.17 Risks of gonadal cancer have been overstated Sex “normalising” interventions, to reinforce a or poorly evidenced, resulting in sterilisations.32 sex assignment, include feminising and masculinis- During a 2013 Australian Senate inquiry into the ing surgical and hormonal interventions, and gona- involuntary or coerced sterilisation of intersex dectomies, often during infancy, childhood and people, it was revealed that routine sterilisations adolescence,18 before the recipient can consent ofwomenwithcompleteandrogeninsensitivity and without firm evidence of necessity or good sur- syndrome no longer take place because of over- gical outcomes. However, initial sex assignment stated risks. There has been no attempt at repara- need not be reinforced, permanent, or irreversible. tions for individuals who consequently need a In some cases, other interventions may be neces- lifetime of hormone replacement. sary for physical health, notably for endocrine issues “ ” 19 Solid data on the prevalence of normalising in congenital adrenal hyperplasia. Surgical inter- interventions are scarce but, despite media reports ventions may sometimes be necessary to tackle ele- 25,26 16,36 stating the contrary, interventions remain rou- vated gonadal cancer risks or urinary issues. tine and central to the management of intersex These surgical interventions should not be conten- traits.27 For example, although FGM is prohibited tious, but firm supporting data are lacking. Moreover, in the UK, Creighton et al note an increasing num- clinical decisions on these interventions entwine ber of clitoral surgeries on under-14s in the UK; “it is therapeutic with “normalising” non-therapeutic 32 not clear if this is secondary to an increase in the rationales. detection or incidence” of intersex traits.28 Accord- Feminising interventions include clitoral sur- ing to a 2015 neonatal handbook by the govern- geries (such as “clitoridectomies”), construction of ment of Victoria, Australia, an intersex birth event a vagina, and related genital surgeries, for exam- remains “distressing” for all in the delivery room; ple, in infants and children with larger clitorises “[c]orrective surgery is usually undertaken within or ambiguous genitalia. Masculinising interven- the first year of life”,18 despite contrary earlier ethi- tionsincludesurgeriesfor“hypospadias”,diag- cal guidance by the same government.29 nosed in boys when the urethra opens between the glans of the phallus and the perineum. Clitoral cutting is considered female genital muti- Rationales and outcomes of medical lation, an abhorrent and harmful practice,20 and a intervention form of gender-based violence prohibited in many Current medical protocols on the paediatric man- countries, yet exemptions may apply to intersex agement of intersex traits were set out in the girls.20,21 Adults are also vulnerable: a medical Chicago “consensus” statement in 2006.16 It journal reported
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