Bodily integrity

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What is the issue?

 
This page is part of a series of articles summarising key and interrelated issues for the intersex movement in Australia, and our work:

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Intersex people are born with physical sex characteristics that do not neatly fit medical norms for female or male bodies. Infants, children, adolescents and adults born with intersex variations risk or suffer forced and coercive medical interventions, designed to make our bodies more typically female or male.

These forced interventions are sometimes termed ‘intersex genital mutilation’ or ‘IGM’ (Office of the High Commissioner for Human Rights 2019). They are distinguished from medical interventions intended to treat evidenced urgent necessity, such as to manage an evidenced inability to urinate, an evidenced high cancer risk, or salt wasting, in that they are not necessary for health, but instead rely on social, cultural and technical rationales.

The consequences of early and unnecessary deferrable interventions can include pain, trauma, shame, loss of sexual function and sensation, urinary incontinence and urgency, a need for ongoing medical treatment or repeat surgeries, experiences of violation and sexual assault, reinforcement of incorrect sex assignment, loss of autonomy and loss of choice. Early exposures to general anaesthesia are also now associated with developmental delays (Schneuer and others 2018).

This is the issue that the intersex human rights movement was founded to tackle (see for example, Briffa 2004), and it remains our most intractable issue. Clinical claims and attempts at self-regulation have failed (Carpenter 2018d).

UN and regional human rights institutions, like intersex organisations and advocates, have condemned these practices. When performed early, without personal informed consent, deferrable interventions violate our rights to freedom from torture and experimentation, and to liberty and security, privacy, and equality before the law (United Nations Human Rights Committee 2017). They are regarded by the UN Committee on the Rights of the Child and the Committee on the Elimination of Discrimination against Women as harmful practices, similar to forced marriage and female genital mutilation (see, for example, CEDAW 2018). Parents are not entitled to consent to harmful practices; they should never be asked or encouraged to consent to them by clinicians.

What do we know about practices in Australia?

There is a lack of transparency about current clinical practices in Australia. Some information is revealed from time to time in press reports, clinical journals, and submissions, but no information is systematically published on practices in hospitals in each State or Territory. This lack of transparency limits action to prevent human rights violations, through the act of obscuring current practices, but also by creating plausible deniability. All too often, Australian governments have been willing to dismiss our case for legislative protection by accepting vague and unsubstantiated suggestions of change to clinical practices.

Intersex diagnoses were concealed from individuals (and often their families) until the early part of this century. The New Zealand Office of the Privacy Commissioner (2018) has identified only variable change to this paradigm. Australia and Aotearoa/New Zealand share clinical institutions and many other characteristics, so it is likely that Australia shares similar issues. Many intersex people remain unlikely today to have adequate information to effectively manage their health and wellbeing.

Nevertheless, pressure from intersex and disability advocates led to the inclusion of intersex people within a Senate committee inquiry on the involuntary or coerced sterilisation of people with disabilities in 2013. The inquiry produced a report on people with disability, and a second report on intersex people. IHRA made five public submissions and several of our directors appeared before a committee hearing. The cross-party report made 15 strong recommendations, however, the incoming Coalition government declined to implement them, passing primary responsibility for reform to States and Territories.

IHRA has invested time and effort into gathering evidence. We have evidence available on current practices from papers published by the Department of Health and the Australian Institute of Health and Welfare. We also have evidence of current policies and approaches in submissions to the 2013 Senate inquiry by clinical institutions. We have evidence from Family Court cases, and from private discussions with parents, individuals, clinicians and other parties. Some of our research and analysis is peer-reviewed (Carpenter 2016; Carpenter 2018a; Carpenter 2018b).

In 2016, publication of a Family Court case, Re: Carla, provided confirmatory and incontrovertible evidence of profoundly disturbing clinical practices, and extensive information on judicial and clinical rationales for medical interventions. We believe that it is not coincidental that the period since has seen the commencement of two national inquiries: an inquiry into reform of the family law system led by the Australian Law Reform Commission, and an inquiry on protecting the human rights of people born with variations in sex characteristics in the context of medical interventions.

This period has also seen direct statements by multiple UN Treaty Bodies on the human rights of intersex people, in response to submissions by IHRA, and joint submissions. These include the United Nations Human Rights Committee (2017), Committee on Economic, Social and Cultural Rights (2017), and the Committee on the Elimination of Discrimination against Women (2018). The Committee against Torture (2017) and the Committee on the Rights of Persons with Disabilities (2017) have also made inquiries.

In 2020, our body of evidence is significant:

  • We have seen rationales for early irreversible medical interventions include “psychosocial rationales” that, until reported in submissions to the UN, included marriage prospects. Other rationales include gender stereotypes, such as the idea that girls like pink and Minnie Mouse underwear, and that boys need to be able to stand to urinate. These have been reported in journal articles, clinical submissions to the Senate, and in Family Court cases (APEG 2013; Carpenter 2018a; Carpenter 2018b; Carpenter 2018c; Kelly and Smith 2017; Kennedy, 2016; Lee and others 2016; O’Connor 2016; Royal Children’s Hospital 2013).
  • We have evidence of government and judicial complicity, for example in a 2016 Family Court decision that described clitoral and labia surgery on a 3-year old as surgery that “enhanced the appearance of her female genitalia” (Carpenter 2018a; Carpenter 2018b; Carpenter 2018c; Kelly and Smith 2017).
  • Clinical bodies like APEG (2013) state that they themselves have “particular concern” regarding post-surgical sexual function and sensation, despite continuing to support early genital surgeries.
  • We hear claims that clinical practices have changed, without being substantiated by evidence of such change (for example, Carpenter 2016; Carpenter 2018b; O’Connor 2016).
  • We have evidence of contradictory current policies and decision-making frameworks, for example in Victoria and the ACT (Carpenter, 2016; Carpenter 2018a; Carpenter 2018c).
  • We have concrete evidence of harmful practices, for example in Queensland, following claims that such practices no longer take place (Carpenter 2018b).
  • We have evidence of clinical decision-making presupposing a need for surgical intervention in NSW (for example in O’Connor 2016).
  • We have evidence that clinical statements, such as by the Australian Medical Association (2014), are disregarded (Carpenter 2018d).
  • In 2014, the Department of Health reported a “marked increase” of 105% in numbers of publicly-funded “vulvoplasties” in adolescents and adults between 2003/4 and 2012/13.61 Numbers in 0-19 year age groups increased from 101 in 2002/3 to 258 in 2014/5 (Carpenter, 2018c; Department of Health 2014). These include surgeries to “labia majora, mons pubis, labia minora, clitoris, bulb of vestibule, vulval vestibule, greater and lesser vestibular glands, and the opening of the vagina” (Department of Health 2014).
  • An average of 71.5 vulvoplasties were performed per year in children aged under 15 between 2002/3 and 2014/5; with a range between 57-95 per year (Carpenter 2018c; AIHW 2017).
  • There were 371 publicly-funded vulvoplasties for so-called “congenital malformations” between 2007/8 and 2011/2; averaging 74.2 per year (Carpenter 2018c; Department of Health 2014).
  • Additional “feminising” surgeries take place under different categories such as “procedures for anomalies of genitalia” (Carpenter 2018c; AIHW 2017).
  • Hundreds of early “masculinising” surgeries are performed each year, including hundreds of repeat surgeries for “second stage hypospadias repair” and the iatrogenic “repair of postoperative urethral fistula” (Carpenter 2018c; AIHW 2017).
  • There is no evidence of any overall reduction in numbers of surgeries relevant to minors with intersex variations between 2002/3 and 2014/5 (Carpenter 2018c).

More information on what we know:

Debate between bioethicists and paediatric surgeons, 2020

Some of these issues are articulated in the most vivid ways possible in a debate between Morgan Carpenter, and a bioethicist and 2 paediatric surgeons speaking at an event for University of Melbourne medical students in June 2020 (Hutson, et al. 2020). The video debate is highly commended as a way of understanding and hearing clinical thinking at the highest levels in Australia.

Our position

Our position is set out in the 2017 Darlington Statement, an Australian – Aotearoa/New Zealand intersex community declaration, where we call for:

  • “prohibition as a criminal act of deferrable medical interventions, including surgical and hormonal interventions, that alter the sex characteristics of infants and children [born with variations of sex characteristics] without personal consent
  • “mandatory independent access to funded counselling and peer support [i.e. resourcing of intersex-led organisations to provide peer support, systemic advocacy and services]
  • “appropriate human rights- based, lifetime, intersex standards of care with full and meaningful participation by intersex community representatives and human rights institutions
  • “independent, effective human rights-based oversight mechanism(s) to determine individual cases involving persons born with intersex variations who are unable to consent to treatment, bringing together human rights experts, clinicians and intersex-led community organisations”

Our position is also reflected in the 2017 Yogyakarta Principles plus 10, Principle 32:

Everyone has the right to bodily and mental integrity, autonomy and self-determination irrespective of sexual orientation, gender identity, gender expression or sex characteristics. Everyone has the right to be free from torture and cruel, inhuman and degrading treatment or punishment on the basis of sexual orientation, gender identity, gender expression and sex characteristics. No one shall be subjected to invasive or irreversible medical procedures that modify sex characteristics without their free, prior and informed consent, unless necessary to avoid serious, urgent and irreparable harm to the concerned person.

States shall:

A) Guarantee and protect the rights of everyone, including all children, to bodily and mental integrity, autonomy and self-determination;

B) Ensure that legislation protects everyone, including all children, from all forms of forced, coercive or otherwise involuntary modification of their sex characteristics;

C) Take measures to address stigma, discrimination and stereotypes based on sex and gender, and combat the use of such stereotypes, as well as marriage prospects and other social, religious and cultural rationales, to justify modifications to sex characteristics, including of children;

D) Bearing in mind the child’s right to life, non-discrimination, the best interests of the child, and respect for the child’s views, ensure that children are fully consulted and informed regarding any modifications to their sex characteristics necessary to avoid or remedy proven, serious physical harm, and ensure that any such modifications are consented to by the child concerned in a manner consistent with the child’s evolving capacity;

E) Ensure that the concept of the best interest of the child is not manipulated to justify practices that conflict with the child’s right to bodily integrity;

F) Provide adequate, independent counselling and support to victims of violations, their families and communities, to enable victims to exercise and affirm rights to bodily and mental integrity, autonomy and self-determination;

These statements and principles are underpinned by rights to liberty, security, non-discrimination, privacy, and freedom from torture, experimentation and harmful practices, established in the Universal Declaration of Human Rights, the International Covenant on Civil and Political Rights, the International Covenant on Economic, Social and Cultural Rights, the Convention on the Elimination of All Forms of Discrimination against Women, the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, the Convention on the Rights of the Child, and the Convention on the Rights of Persons with Disabilities.

In our view, the preconditions necessary for clinical practice guidelines do not exist. Evidence in support of clinical practices is scarce and subject to bias and constraints. The key demands of medicine are that medical interventions meet human rights norms. These demands fundamentally comprise an ethical position, and this cannot adequately be addressed by clinical guidelines where we know that clinical adherence is low and subject to clinical judgement, and where clinicians hold varying preexisting beliefs and attitudes towards treatment.

What have we done about bodily integrity?

We continually engage in evidence-building, including through supporting independent research. We engage with policy-makers and local, national, regional and international human rights institutions. We debate with clinicians and bioethicists. We promote governmental and institutional responses to our findings, and in particular to Family Court cases.

We build community expertise through community gatherings and mentoring. We provide lectures and other forms of education for students of medicine, sexual health, bioethics, sexology, and genetic counselling.

Internationally, Tony Briffa and Morgan Carpenter participated in the third international intersex forum that produced the Malta Declaration, 2013. Morgan Carpenter also participated in the drafting committee for the Yogyakarta Principles plus 10, and is a signatory.

Independent national inquiries, 2017-2019

In 2017-2019, multiple directors and members of IHRA are contributing to the expert reference for an Australian Human Rights Commission inquiry into protecting the rights of people born with variations in sex characteristics in the context of medical interventions.

In 2018, we collaborated with disability and other organisations in developing common responses to an Australian Law Reform Commission inquiry into reform of the family law system, including the “welfare jurisdiction” that governs “special medical procedure” applications to the Family Court.

State and territory actions

Board members of IHRA are members of State and Territory LGBTIQ reference groups, where they exist, and we raise these issues in those settings. Tony Briffa is a co-chair of the Victorian government’s intersex expert advisory committee, while other board members are involved in reference groups in ACT and Queensland.

We also seek to put our concerns onto policy agendas in multiple jurisdictions. Often this has necessitated outlining our concerns for the bodily integrity and autonomy of intersex people within inquiries on other issues. These include inquiries that many jurisdictions perceive as relevant to intersex people, such as in relation to identification documents. It is notable that ‘LGBTI’ frameworks appear to favour identity-focused actions, while we collaborate in our work on forced and coercive medical practices with the disability movement.

Submissions to UN bodies

In the period from 2014, we have made submissions to UN Treaty Bodies, including:

Senate committee inquiry, 2013

With the support of disability organisations, in 2012 and 2013 we lobbied for inclusion of intersex people in a Senate inquiry into the involuntary or coerced sterilisation of people with disabilities. Our submissions, made between February and August 2013, are all public:

Further reading

Androgen Insensitivity Syndrome Support Group Australia, Intersex Trust Aotearoa New Zealand, Organisation Intersex International Australia, Eve Black, Kylie Bond, Tony Briffa, Morgan Carpenter, et al. 2017. ‘Darlington Statement’. Sydney, New South Wales.

Asia Pacific Forum of National Human Rights Institutions. 2016. Promoting and Protecting Human Rights in Relation to Sexual Orientation, Gender Identity and Sex Characteristics.

Australian Institute of Health and Welfare (AIHW). Procedures data cubes. 2017.

Australian Medical Association. 2014. ‘AMA Position Statement Sexual and Reproductive Health 2014’.

Australasian Paediatric Endocrine Group (APEG), Jacqueline Hewitt, Garry Warne, Paul Hofman, and Andrew Cotterill. 2013. ‘Submission of the Australasian Paediatric Endocrine Group to the Senate Inquiry into the Involuntary or Coerced Sterilization of People with Disabilities in Australia: Regarding the Management of Children with Disorders of Sex Development’.

Briffa, Tony. 2004. ‘Intersex Surgery Disregards Children’s Human Rights’. Nature 428 (April): 695.

Carpenter, Morgan. 2016. ‘The Human Rights of Intersex People: Addressing Harmful Practices and Rhetoric of Change’. Reproductive Health Matters 24 (47): 74–84.

Carpenter, Morgan. 2018a. ‘The “Normalization” of Intersex Bodies and “Othering” of Intersex Identities in Australia’. Journal of Bioethical Inquiry, May, 1–9.

Carpenter, Morgan. 2018b. ‘Intersex Variations, Human Rights, and the International Classification of Diseases’. Health and Human Rights 20 (2): 205–14.

Carpenter, Morgan. 2018c. ‘The “Normalisation” of Intersex Bodies and “Othering” of Intersex Identities’. In The Legal Status of Intersex Persons, edited by Jens Scherpe, Anatol Dutta, and Tobias Helms, 445–514. Cambridge, England: Intersentia.

Carpenter, Morgan. 2018d. ‘Intersex Human Rights: Clinical Self-Regulation Has Failed’. Reproductive Health Matters (RHM) (blog). 26 October 2018.

Carpenter, Morgan. 2018e. ‘What Do Intersex People Need from Doctors?’ O&G Magazine 20 (4): 32–33.

Committee on the Elimination of Discrimination against Women (CEDAW). 2018. ‘Concluding Observations on the Eighth Periodic Report of Australia’. CEDAW/C/AUS/CO/8.

Committee against Torture. 2017. ‘List of Issues Prior to Submission of the Sixth Periodic Report of Australia’. CAT/C/AUS/QPR/6.

Committee on Economic, Social and Cultural Rights. 2017. ‘Concluding Observations on the Fifth Periodic Report of Australia’. E/C.12/AUS/CO/5.

Committee on the Rights of Persons with Disabilities. 2017. ‘List of Issues Prior to the Submission of the Combined Second and Third Periodic Reports of Australia’. CRPD/C/AUS/QPR/2-3.

Community Affairs References Committee, Senate, and Australia. 2013. Involuntary or Coerced Sterilisation of People with Disabilities in Australia. Canberra: Senate of Australia.

Community Affairs References Committee, Senate of Australia. 2013. Involuntary or Coerced Sterilisation of Intersex People in Australia. Canberra: Senate of Australia.

Department of Health. 2014. ‘MBS Reviews Vulvoplasty Report’. Department of Health.

Hutson, John, Sonia Grover, Clare Delany, and Morgan Carpenter. 2020. ‘Intersexion: The Birth of Ambiguity’. Presented at the Melbourne Medical Student Conference 2020, University of Melbourne, June 23. https://ihra.org.au/36471/intersexion-mdscx-2020/.

Jones, Melinda. 2017. ‘Intersex Genital Mutilation – A Western Version of FGM’. The International Journal of Children’s Rights 25 (2): 396–411.

Kelly, Fiona, and Malcolm K Smith. 2017. ‘Should Court Authorisation Be Required for Surgery on Intersex Children? A Critique of the Family Court Decision in Re Carla — (2017) 31 AJFL 118’. Australian Journal of Family Law 31 (2): 118–33.

Kennedy, Aileen. 2016. ‘Fixed at Birth: Medical and Legal Erasures of Intersex Variations’. UNSW Law Journal 39 (2): 813–42.

Lee, Peter A., Anna Nordenström, Christopher P. Houk, S. Faisal Ahmed, Richard Auchus, Arlene Baratz, Katharine Baratz Dalke, et al. 2016. ‘Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care’. Hormone Research in Paediatrics 85 (3): 158–180.

O’Connor, Mike. 2016. ‘The Treatment of Intersex and the Problem of Delay: The Australian Senate Inquiry into Intersex Surgery and Conflicting Human Rights for Children’. Journal of Law and Medicine 23 (3): 531–43.

Office of the High Commissioner for Human Rights. 2019. ‘Background Note on Human Rights Violations against Intersex People’. https://www.ohchr.org/EN/Issues/Discrimination/Pages/BackgroundViolationsIntersexPeople.aspx.

Office of the High Commissioner for Human Rights, African Commission on Human and Peoples’ Rights, Council of Europe, Office of the Commissioner for Human Rights, Inter-American Commission on Human Rights, Special Rapporteur on torture and other cruel, inhuman, or degrading treatment or punishment, Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, Special Rapporteur on violence against women, its causes and consequences, and Special Representative of the UN Secretary-General on Violence against Children. 2016. ‘Intersex Awareness Day – Wednesday 26 October. End Violence and Harmful Medical Practices on Intersex Children and Adults, UN and Regional Experts Urge’. Office of the High Commissioner for Human Rights.

Office of the Privacy Commissioner. 2018. ‘Handling Health Information of Intersex Individuals’. Office of the Privacy Commissioner (blog). 2 March 2018.

Royal Children’s Hospital Melbourne. 2013. ‘Submission of the Royal Children’s Hospital Melbourne to the Senate Inquiry Into the Involuntary or Coerced Sterilization of People with Disabilities in Australia: Regarding the Management of Children with Disorders of Sex Development’.

Schneuer, Francisco J, Jason P Bentley, Andrew J Davidson, Andrew JA Holland, Nadia Badawi, Andrew J Martin, Justin Skowno, Samantha J Lain, and Natasha Nassar. 2018. ‘The Impact of General Anesthesia on Child Development and School Performance: A Population-Based Study’. Pediatric Anesthesia, April.

United Nations Human Rights Committee. 2017. ‘Concluding Observations on the Sixth Periodic Report of Australia’. CCPR/C/AUS/CO/6.

Yogyakarta Principles. 2017. The Yogyakarta Principles Plus 10: Additional Principles and State Obligations on the Application of International Human Rights Law in Relation to Sexual Orientation, Gender Identity, Gender Expression and Sex Characteristics, to Complement the Yogyakarta Principles.

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