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LGBTQIA
Vol. 20 No 4 | Summer 2018
Feature
What do intersex people need from doctors?
Morgan Carpenter
MBioethics (Sydney)

Intersex people are born with sex characteristics that do not fit medical norms for female or male bodies.1 The intersex population is extremely diverse, with more than 40 relevant genetic traits known, including genital, gonadal, hormonal and chromosomal variations. Intersex traits are innate, so they can be identified at any age, including at birth or in early childhood, during puberty or when trying to conceive a child. Prenatal testing can also identify many relevant traits. People with variations of sex characteristics use many different words to describe our bodies. These include the word intersex, but also diagnostic labels and, rarely outside medical settings, the stigmatising term ‘disorders of sex development’.

When diagnosed early, people born with intersex variations in Australia are routinely subject to medical interventions without personal informed consent, typically in infancy, childhood or adolescence. The intent is often to ‘normalise’ individuals’ identities and tackle stigma, but there is no evidence that these goals are achievable through surgical and other medical interventions.2 3 The intersex movement has challenged these interventions for more than two decades.4 5

In 2013, following advocacy by intersex and disability advocates, a Senate committee inquiry into the involuntary or coerced sterilisation of both populations recommended the deferral of such medical interventions until individuals can determine whether or not they wish to undergo treatment. The inquiry established that there was no clinical consensus regarding the treatment of intersex people. It also found arguments that surgery addresses the stigmatisation of intersex people are circular.6 The inquiry report has not been implemented.

The following year, the Australian Medical Association (AMA) concurred that normalising cosmetic genital surgery should be avoided until children are able to ‘fully participate in decision-making’.7 State and territory governments have made similar statements. For example, in 2012, the Queensland government stated that research ‘and investigation now advises against any irreversible or long-term procedures’ unless they present a ‘serious risk’ to health.8

Unfortunately, such interventions persist. Despite a lack of transparency regarding historical and current practices, much anecdotal evidence regarding current practices in Australia is available to national intersex organisations. That lack of transparency means that intersex human rights defenders typically encounter a disbelief that such practices could still continue here, but Family Court cases provide incontrovertible evidence that they do.

The Family Court of Australia has adjudicated in multiple relevant cases. In 2016, the Family Court adjudicated the case of five-year-old Carla in Queensland, determining that parents could authorise her sterilisation. Evidence on cancer risks was not supported by the cited documentation, nor the International Classification of Diseases 11th Revision (ICD-11). The decision relied upon gender stereotypes, including that Carla wore Minnie Mouse underwear, wore her hair in long blond braids and had a Barbie bedspread.9 10 11 The case also revealed that, in 2014, Carla had already had a clitorectomy and labioplasty that, in the words of the judge, had ‘enhanced the appearance of her female genitalia’. Justice Forrest argued that early surgery would prevent her from harms associated with understanding her body.

Last year, a different Family Court case revealed that Kaitlin, an adolescent raised male, but who always identified as a girl, was prescribed testosterone to commence puberty. Unable to produce sex hormones herself, she became non-compliant when she understood the effects of testosterone. The court prescribed oestrogen, but made no statements on the inappropriateness of the original sex hormone prescription.12 13

It is likely that practices around Australia vary, but also that they depend very much on the disposition and beliefs of individual physicians that lead multidisciplinary teams.

Intersex organisations also encounter confusion about what it is that we want to change about medical practices and healthcare. Some of this confusion arises from assumptions that to be LGBTI means to be old enough to have agency to affirm a sexual or gender identity. This is not true of Carla, for example. All available data suggests that most intersex people grow up to identify with sex assigned at birth (often described as cisgender), while very many of us are heterosexual. The word intersex bears the brunt of public misconceptions, including associations with being queer or transgender, but fundamental concerns about how bodies are regulated affect all intersex people irrespective of the words we use.

It is important to recognise that the possibility of incorrect gender assignment is not the only issue we face, and may be unlikely. However, early genital surgeries are associated with ‘particular concern’ for later sexual function and sensation14 15 and medical interventions are also often heteronormative, that is, like in Carla’s case, they are intended to produce future women and men capable of penetrative heterosexual intercourse.

The current social and medical environment presents a challenging contradiction. Medicine constructs intersex bodies as either female or male (and ‘disordered’), while law and society construct intersex identities as neither female nor male. Medicalisation is posed as a solution to discrimination and ‘othering’, while legal and social ‘othering’ of intersex people as a third sex is posed as a solution to medicalisation.16 17 This conflict arises from fundamentally different ideas, not about the nature of intersex variations, but about their meaning and how to name and treat them. Neither medical nor socio-legal models allow for individual self-determination. Neither is based on strong evidence. Both cause harm.

While often forgotten in an undue focus on our genitals and gonads as children, many of us have health issues as adults. These can be innate, but sometimes they are the consequences of early medical interventions. Gonadectomies result in a life-long need for hormone replacement and early medical interventions can result in trauma and avoidance of healthcare.18 However, the experience of many intersex adults in accessing healthcare is also frequently poor, with a need to educate clinicians about our own bodies and health needs, and tackle assumptions about our identities. Many of us lack good quality information on our health needs or the body parts we have, and some of us need sensitive attention to issues relating to fertility and trauma.

Last year, many of us from several different organisations in Australia and New Zealand came together to discuss our concerns and prepare a shared set of demands. Those demands don’t just seek to end the practices evident in recent court decisions, they recognise our health issues and seek to improve our care.

The Darlington Statement sets out those demands.19 In this statement, we call for the criminal prohibition of deferrable medical interventions associated with human rights-affirming oversight of relevant medical interventions and standards of care. We call for improved transition pathways between paediatric and adult services, and access to redress and reparative treatments. We also call for resourcing for affirmative, intersex-led peer support and systemic advocacy. These demands are not so radical in the context of statements by a Senate committee and the AMA.

The Darlington Statement also recognises our diversity as a population and identifies attempts to classify intersex people as a third sex or gender as harmful. As with race and religion, we question the inclusion of sex or markers on identification documents. While they remain required, we propose access to non-binary and alternative gender markers for any individuals who choose them and who can consent. This is perhaps more radical, but sex and gender markers are already sometimes poor indicators of medical needs.

These demands express simple concerns with transparency, accountability and respect. Current medical practices give rise to serious concerns and they need to change to bring them into line with human rights norms that Australia is obliged to meet.20 Many of us lack trust in healthcare providers, particularly people with a history of unwanted interventions and medical display. All of us hope to find practitioners who are willing to listen and be gentle when we need healthcare. Please consider reaching out to us if you are interested in taking referrals, or if you are involved in developing or updating educational resources or curricula.

References

  1. Office of the High Commissioner for Human Rights, African Commission on Human and Peoples’ Rights, Council of Europe, et al. 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; 2016 [cited 2016 Oct 24]. Available from: www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=20739&LangID=E.
  2. 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 [Internet]. Cambridge, England: Intersentia; 2018 [cited 2018 Sep 12]. p445-514. Available from: http://intersentia.com/en/the-legal-status-of-intersex-persons.html.
  3. Carpenter M. The ‘normalisation’ of intersex bodies and ‘othering’ of intersex identities in Australia. J Bioethical Inq 2018 May 7;1-9. Available from: https://doi.org/10.1007/s11673-018-9855-8.
  4. Briffa T. Intersex surgery disregards children’s human rights. Nature 2004 Apr 15;428:695. Available from: www.nature.com/nature/journal/v428/n6984/full/428695a.html.
  5. Chase C. Surgical progress is not the answer to intersexuality. J Clin Ethics 1998;9(4):385-92.
  6. Community Affairs References Committee, Senate of Australia. Involuntary or coerced sterilisation of intersex people in Australia. Canberra: Community Affairs References Committee; 2013. Available from: www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Involuntary_Sterilisation/Sec_Report/index.
  7. Australian Medical Association. AMA Position Statement Sexual and Reproductive Health 2014 [Internet]. 2014 [cited 2018 Jul 18]. Available from: https://ama.com.au/sites/default/files/documents/position_statement_on_sexual_and_reproductive_health_2014_0.pdf.
  8. Department of Communities. Engaging Queenslanders: A guide to working with lesbian, gay, bisexual, transgender and intersex (LGBTI) communities. 2012 Jan. Report No.: 2896-11 FEB12.
  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 [Internet]. Cambridge, England: Intersentia; 2018 [cited 2018 Sep 12]. p445-514. Available from: http://intersentia.com/en/the-legal-status-of-intersex-persons.html.
  10. Carpenter M. The ‘normalisation’ of intersex bodies and ‘othering’ of intersex identities in Australia. J Bioethical Inq 2018 May 7;1-9. Available from: https://doi.org/10.1007/s11673-018-9855-8.
  11. Kelly F, Smith MK. Should court authorisation be required for surgery on intersex children? A critique of the Family Court decision in Re Carla (2017) 31 AJFL 118. Aust J Fam Law 2017;31(2):118-33.
  12. 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 [Internet]. Cambridge, England: Intersentia; 2018 [cited 2018 Sep 12]. p445-514. Available from: http://intersentia.com/en/the-legal-status-of-intersex-persons.html.
  13. Carpenter M. The ‘normalisation’ of intersex bodies and ‘othering’ of intersex identities in Australia. J Bioethical Inq 2018 May 7;1-9. Available from: https://doi.org/10.1007/s11673-018-9855-8.
  14. 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 [Internet]. Cambridge, England: Intersentia; 2018 [cited 2018 Sep 12]. p445-514. Available from: http://intersentia.com/en/the-legal-status-of-intersex-persons.html.
  15. Carpenter M. The ‘normalisation’ of intersex bodies and ‘othering’ of intersex identities in Australia. J Bioethical Inq 2018 May 7;1-9. Available from: https://doi.org/10.1007/s11673-018-9855-8.
  16. 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 [Internet]. Cambridge, England: Intersentia; 2018 [cited 2018 Sep 12]. p445-514. Available from: http://intersentia.com/en/the-legal-status-of-intersex-persons.html.
  17. Carpenter M. The ‘normalisation’ of intersex bodies and ‘othering’ of intersex identities in Australia. J Bioethical Inq 2018 May 7;1-9. Available from: https://doi.org/10.1007/s11673-018-9855-8.
  18. tröm A, Houk CP, et al. Global disorders of sex development update since 2006: perceptions, approach and care. Horm Res Paediatr 2016 Jan 28;85(3):158-180. Available from: www.karger.com/?doi=10.1159/000442975.
  19. Androgen Insensitivity Syndrome Support Group Australia, Intersex Trust Aotearoa New Zealand, Organisation Intersex International Australia, Black E, Bond K, Briffa T, et al. Darlington Statement. Sydney, New South Wales; 2017 Mar [cited 2018 Apr 10]. Available from: https://darlington.org.au/statement.
  20. Office of the High Commissioner for Human Rights, African Commission on Human and Peoples’ Rights, Council of Europe, et al. 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; 2016 [cited 2016 Oct 24]. Available from: www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=20739&LangID=E.

One Comment

Aileen Kennedy

What a clear, concise and profound outline of issues that intersex people face when they are in the medical system. The persistence of these harmful cultural medical practices is difficult to understand for laypeople who are not immersed in the culture of medicalisation.

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