Cut It Out – by Mandy Henningham & Tiffany Jones

Cut It Out: Rethinking surgery on intersex infants

This year has seen intense debate in the media, parliament and policy back-rooms about surgical interventions on intersex infants. The potential to have intersex variations exists in all humans’ prenatal development in the first few weeks – for a portion of humans a level of atypicality in sex traits continues on after this point (Ainsworth, 2015). Intersex variations are atypical sex characteristics; these can include chromosomes, genes, external genitalia, internal reproductive organs, hormones, or secondary characteristics (like body hair). In the last decade people with intersex variations have been increasingly studied or referred to as part of an umbrella group; rather than seen only as those with a specific variation such as for example Congenital Adrenal Hyperplasia (CAH) or Androgyn Insensitivity Syndromes (AIS). This group has also been termed (inappropriately) hermaphroditic, or as having ‘disorders’ of sex development (DSDs) – a large Australian survey showed the group preferred the person-centred ‘term people with intersex variations’ (Jones et al., 2016). Research has generally estimated that 1.7-4% of people are born intersex (OII Australia, 2012). Given some elements of sex (chromosomes, genes, hormones) are not apparent without testing, current estimates of the incidence and types of intersex variations may be conservative. The United Nations has recently affirmed the right to non-discrimination in healthcare for intersex youth, and has issued statements against early surgical interventions in the context of ‘child torture’ and ‘LGBTI youth rights’ broadly (Office of the High Commissioner for Human Rights, 2015; United Nations Human Rights Council, 2014). This chapter considers how health interventions for intersex youth have been recently studied in international research literature. It then compares these framings to the results of an international online survey of intersex people on their experiences of surgical intervention during their youth.

The Conflicted Literature on Surgery

Studies of the surgical interventions conducted on intersex youth in our review of the recent literature have featured a range of methods, including clinical and socially-oriented approaches. Participant numbers in these studies have ranged from sources with unclear numbers of intersex people (Dwyer, Ball, & Barker, 2015) through to sources with up to 272 participants (Jones, 2016). Most commonly the studies up until now have focussed on only one participant. Sources have also included a wide span of ages ranging from one day (Lucas-Herald, Rodie, Lucaccioni, Shapiro, & McNeilly, 2015) to 16-87 years of age (Jones, 2016); most commonly the studies used adults to consider youth healthcare retrospectively.

The two most common methods in recent studies are almost directly oppositional in their goals. Much of the recent literature for example used random medical case reports of individual patients’ diagnosis and interventions (Bonanni, Pasetti, Ghiggeri, & Gandolfo, 2015; Ceci, Calleja, Said, & Gatt, 2015; Ekenze, Nwangwu, Amah, Agugua-obianyo, & Onuh, 2015; Latrech, Skikar, Mohammed El Hassan, Chraïbi, & Gaouzi, 2015; Mutlu, Kirmizibekmez, Aydin, Çetiner, & Moralioglu, 2015; Palanisamy, Patel, Sabnis, Palanisamy, & Vijay, 2015). These were pieces written by doctors or health academics on variably 1-108 intersex participants whom they had analysed and treated clinically – mainly just one infant or young person who had been subjected to tests (anatomical, hormonal, and/or radiological evaluations), and often hormonal and/or surgical interventions (e.g. genital surgeries such as gonad removals or cosmetic constructive work for example). Evaluations of the cases strongly privileged doctors’ own positive assessment of their own clinical intervention’s ‘success’ for the young intersex person. The sources largely did not report on the young participants’ own assessment of their treatments.

The other particularly common method was autobiographical critical narratives – an individual intersex author’s own critique of the intervention experiences in their youth or similar (Inter, 2015; Pagonis, 2015; Quinn, 2015; Simon, 2015; Truffer, 2015; Zieselman, 2015). These studies mainly considered the negative wellbeing impacts of intersex individuals receiving a lack of information during their youth and enduring often enforced interventions without their consent. The studies discuss their feelings of disconnection, trauma and depression, infertility, decreased sexual function/pleasure, undesired sex-based presentations, or surgical complications. A few studies similarly focussed on intersex participants’ views on their own surgeries used a survey (Jones, 2016; Lin-Su, Lekarev, Poppas, & Vogiatzi, 2015; Wang & Tian, 2015). These studies considered teenagers through to significantly older adults’ perspectives on their own experiences of quality of life, medical and social experiences. These studies problematized a range of health-care related issues including casting use of DSD as a disordering conceptualisation, noting problems with interventions and/or sexual experiences post-interventions, and decrying the lack of direct consultation around intersex peoples’ needs in health-care (Wang & Tian, 2015), mental health (Lin-Su et al., 2015) and education (Jones, 2016).

Thus, the two main sets of literature provide wildly conflicting messages about health care intervention for intersex youth. On the one hand, literature from the medical research largely supports surgical interventions as generally ‘successful’ in achieving doctors’ goals of correcting what they see as ‘deformities’. On the other hand, literature from the sociological research and intersex individuals portrays surgical interventions as potentially problematic, harmful and often unwanted. Clearly, there is a difference between the healthcare that is being provided to intersex youth and the healthcare that is wanted. There has therefore been a need to explore how healthcare for intersex youth could be improved.

An International Survey of People with Intersex Variations

Given that intersex people may view themselves or their identities in queer, psychiatric, medical or other terms (in their self-definition as intersex people, or someone with a disorder or variation for example), we wanted to create a study that was ‘open’ to diversity. We needed to avoid any tendency to absolutise differences between insiders and outsiders in intersex group memberships (Young, 1997). Therefore, we adopted a sociology of health in which each individual’s view was treated as valid in its own right but acknowledged as largely incommensurable with the understandings of outsiders (Young, 1997). In many ways the project was organised around Critical research goals and methodologies: particularly casting ‘intersex community guidance’ on healthcare as primary above any external perspectives.

An anonymous Sydney University Medical School online survey was used to collect data from people with intersex variations, hosted by Survey Monkey. It was piloted by two intersex people first, to screen for inappropriate questions or insensitive wording and ensure it addressed the needs of the community. The survey questionnaire contained both forced-choice (quantitative) and open-ended (qualitative) questions. Data were obtained across eleven months (August 2014-June 2015). The recruitment process targeted participants with medically recognised intersex variations who were over the age of 18 and therefore able to reflect on their health care experiences during their ‘whole youth’ (infancy to adolescence). Processes included online advertisements and emails sent to clinics and health services, support organisation newsletters and online intersex networks on social media around the world (ensuring participation opportunities for a range of intersex people with different variations who had and had not experienced significant health interventions). Participants needed to self-select to join research. The survey was in English and covered health and other topics. Here we explore the data on demographics, diagnosis, early surgical intervention, physical and mental healthcare in youth, and the improvement of healthcare for youth. Descriptive and comparative statistical analyses were undertaken for the intersex participants’ closed answer responses in SPSS, and grounded thematic analyses were prepared of their open answer written responses.

Results

Where Participants Came From

A total of 81 participants completed the survey, aged from 22 to 71yrs, with a mean age of 43yrs. Participants were born in 19 different countries; the largest portion of participants were born in the United States of America (n=38), followed by the United Kingdom (n=10), Canada (n=9) and Australia (n=8). These four countries particularly had active intersex community networks supporting the survey’s promotion. Participants had an array of educational backgrounds, with 35% completing tertiary education and 27% completing postgraduate studies. A further 14% stated they had completed some tertiary education and another 14% completing a trade certificate. Only 10% had halted their education after completing high school. This suggested a lower dropout rate overall than in an earlier Australia-only study; which found 18% of 272 intersex people had not completed high-school due to complications from early surgical intervention (Jones, 2016).

Region of Birth No. of participants
North America 47
Europe 20
Asia-Pacific 12
Africa 1
Total 80

 

Figure 1: Participants’ region of birth.

The majority of participants were assigned female at birth (54%), fewer were assigned male (39%). The remaining participants were assigned one sex and then reassigned another during their infancy, or were not assigned a sex. Overall, most of the participants (52%) currently identified as women, a smaller portion identified as men (17%), some were gender fluid (5%), genderless (4%) and the remainder had a combination of identities. This reflected findings in an Australian study that those assigned male at birth were more likely to have a different gender identity later in life (Jones et al., 2016). In total, almost a third of participants had identities that challenged the two gender binary norms and identified as either fluid or their own subjective interpretation of gender. For example one participant said, ‘If I could become third gender, a hermaphrodite I would. I was born to be both and I want my body to be both’.

When Intersex Variations Were Diagnosed

Participants received a range of diagnoses for their intersex variations. Androgyn insensitivities/AIS were the most common diagnoses (25%), followed by Ambiguous Genitalia (15%), Congenital Adrenal Hyperplasia/CAH (12%), Klinefelter’s Syndrome (8%), Ovotesticular conditions (6%), Mosaicism (6%), Hypospadias (5%), 46XXY (5%), Gonadal Dysgenesis (3%) and 47XXY (3%). Other reported variations included Progestin Induced Viralisation/PIV, Mayer-Rokitansky-Küster-Hauser/MKRH and Swyer’s Syndrome. For most participants, diagnosis occurred during their youth. Specifically, 34% were diagnosed 0-3yrs; 9% were aged 4-10yrs; and 13% were 11-17yrs. Only 13% were 18-25yrs, and 32% were 25+yrs. Most (60%) reported that they did not feel like they were fully informed about their intersex variation during their youth, and many expressed a desire for earlier information in their comments. One participant explained, ‘I wish I had been diagnosed as a child, it would have allowed me to be at one with the person I now am’.

Surgical Intervention During Youth

A total of 60% of participants received surgery during infancy or childhood, 37% did not, the remainder were unsure. Importantly, most (64%) of those aged under 40yrs had received surgical intervention in infancy or childhood; suggesting that this was not a declining practice in the last half century. A strong majority of 96% of participants stated that they felt the surgery was inappropriate; only a few individuals felt that the surgery was appropriate. Participants were asked in a write-in question whether upon reflection as an adult, ‘you wish you had received surgical intervention as an infant?’ The majority (over three quarters) just said ‘no’ or answered in the negative with minimal comment. A further eight participants stated that infants could not consent to such a procedure; for example a participant clarified, ‘The fact I was a child undergoing such treatment created a real sense of difference and was completely dis-empowering to me because I could not consent to it’. Another participant explained, ‘Some of the surgery could have waited until I was old enough to understand and consent. I may have agreed to the surgery, but I would have preferred it to happen with my consent’. Only two participants wished they did receive surgical intervention earlier; one to ‘better prepare’ for adulthood; the other ‘for health purposes’.

Attitudes Towards Physical Healthcare

Participants were asked if they had ‘sufficient healthcare management regarding your intersex variation?’. Four fifths of the group did not; only one fifth had sufficient healthcare. Many who experienced insufficient healthcare discussed how they did not receive enough support, had health professionals with no training in intersex issues, did not feel their intersex status was distinguished from being transgender, or experienced limited handover in their healthcare from adolescence to adulthood. Typical participant comments included ‘no access to (intersex) specialists, and no ongoing support’ and, ‘I have never had proper care’. Lack of training for healthcare professionals often resulted in participants being misgendered or referred to with mixed gendered terminology; one participant said their physician would often contradict herself by ‘using ‘clitoris’ in one sentence and ‘phallus’ in the next, which becomes offensive and invalidating’ – and confusing to a child. Only two participants mentioned that their care was limited due to their area of residence; the primary issue appeared to be lack of supports for ‘intersex youth’ generally. These findings reflected other studies showing intersex people believe a lack of training for health care professionals is a major issue (Davis, 2015; Jones, 2016).

Participants who received sufficient healthcare mainly explained that it involved having a doctor who was able to manage an array of medical complications, or multiple health professionals who were educated in different intersex health concerns. Three participants discussed having access to multiple health services which allowed their variation to be treated as a complex issue. One of these participants had both ‘a very good reproductive endocrinologist’ and ‘an excellent therapist about facing my CAIS diagnosis’. The participants also talked about the value of self-directed care; taking ownership over their own bodies (self-determination) and educating themselves on their own variations and then finding doctors that suited them. One of the participants explained, ‘I am in charge and empowered in my healthcare. Big difference: I am educated about my CAIS. I ask lots of questions, unlike my parents’. They also mentioned seeking out intersex support groups as part of their care, ‘Knew nothing as a child but AISSG group (…) enlightened me’. This showed that poor healthcare could not only be turned around by training, but by empowerment of intersex youth through their exposure to alternate intersex-run information sources.

Attitudes Towards Mental Health Support

The majority of 75% of participants reported seeking mental health support. The participants’ comments suggested three clear mental health support seeking trends: seeking gender counselling, seeking counselling for mental health issues (depression, suicidal thoughts), and seeking counselling for PTSD surrounding their health interventions. However, a write-in comment question on the quality of mental health support experiences showed that of those who did seek mental health support, only 15% had a positive experience. There was little difference between those allocated female or male sex markers in terms of seeking mental health support as adults or mental health support quality, and no difference by region. Negative experiences in seeking mental health services were mainly explained as difficulties in finding appropriate mental health supports (that they did not exist for intersex youth), or existing services being unhelpful. A typical comment included, ‘did go to therapy for a while but then that therapist moved to another place (…) It didn’t help me much anyway’.

Mental health professionals’ lack of education on intersex issues was also frustrating for many participants. One commented that they had to educate therapists; who generally ‘have heard the word intersex, but that is about it’. Some participants had bad experiences. For example, one participant commented that their therapist tried to make them more masculine, and that ‘The experience was terrible and the therapist refused to acknowledge my bisexuality (…) I quit’. Another stated, ‘They [mental health professionals] ignored my childhood medical history, and would not let me talk about the gender assignment issues’. Of the participants who sought the support of a mental health service and reported having a positive experience, written descriptive responses ranged from it being ‘adequate’ to statements such as ‘I would not have survived suicidal depression without mental health support’.

Improving Healthcare Overall

Participants were asked how they felt the management and support of intersex children could be improved. Out of 66 written responses, one of the most strongly recommended areas for improvement was healthcare professional training (23 participants). A participant commented for example that healthcare professionals needed to learn, ‘validation of gender and use of properly gendered words and terminology that affirms the person’s identity’. Another commented that health professionals needed to, ‘recognize that variation in biologic sex is normal and not a problem that needs to be fixed’. Equally, another strong message was the call to delay medical and surgical intervention until an age of consent (23 participants). One participant explained, ‘listen to the person no matter how old they are. Don’t give meds or do surgery unless the person has agreed it’s a good idea’ (at an appropriate age).

A further 13 participants discussed a need for greater mental health support and access, and another 13 participants desired more resources about intersex variations. Seven participants discussed a need for peer support groups for intersex youth or parents, and five suggested better long-term support and follow ups. Some individual comments reflected on the need to prevent hurtful experiences; one comment specifically discussed the problem of children being ridiculed, ‘Be honest with children, they are not stupid. I was put down by a doctor who made fun of my hypogonadism and penis size’.

The Need to Delay Surgical Intervention

Overall the international survey data reflected the strong incidence of surgical intervention for intersex people seen in country-specific large-scale surveys, case studies and autobiographical literature from around the world. In the literature review, most medical studies promoted interventionist perspectives pathologising ‘patients with DSDs’ and propounding the need for surgical interventions. Contrastingly, the survey data reported in this article showed that although early ‘corrective’ surgical intervention was widespread, it was largely unwanted. Almost all participants felt the surgery they experienced was inappropriate, and three quarters would not wish for surgery in infancy or childhood. This finding reinforced the individual stories of regret around interventions and resistance to interventionist approaches found in the narratives of intersex individuals (Baratz & Karkazis, 2015; Cynthia, 2015; Pagonis, 2015).

The study showed that the disordering medical literature is misconceived. A pro-active stance towards aligning the range of perspectives on health-care for intersex people needs to be taken by a range of stakeholders (from policy-makers to health-care providers) if the tensions between intersex people and healthcare professionals are to be resolved. Anti-discrimination legislation at the international level needs to be drawn upon where possible to justify the need for non-discriminatory revisions to current approaches delaying surgical and other interventions and only allowing them in the event of the patient’s informed consent, as is starting to happen in Australia and Malta (Jones et al., 2016). The data on good healthcare experiences in the study implied poor healthcare could not only be turned around by training as argued elsewhere (Davis, 2015) but also by empowerment of intersex youth through their exposure to alternate information sources. Community supports for intersex youth therefore need to be developed and funded in a range of contexts, and may conceivably be enhanced through targeted UNESCO and other civil society campaigns. It is time to cut out unnecessary early surgical intervention on intersex infants around the world.

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Mandy Henningham studies at the Discipline of Child and Adolescent Health, Sydney Medical School at the University of Sydney. She completed her Master of Health Science (Sexual Health) at the Health Science campus at the University of Sydney. Through this degree, she found her passion to pursue LGBTI and human rights. Mandy pursued other degrees in health such as a Graduate Certificate in Public Health and also completed a Bachelor of Health and Movement (Sport) which fuelled her passion for health and fitness. This background in health as well has led Mandy to pursue research interests in LGBTIQ health.

Tiffany Jones (PhD) researches LGBTI issues, sociology of education and health, and policy at Macquarie University. She is an adjunct Associate Professor at La Trobe University. Her projects have been funded by the ARC, UNESCO, beyondblue and others. She authored Intersex: Stories and Statistics and other titles. She has liaised with the UN, UNESCO and government and non-government organisations. She sits on the editorial board of LGBT Health and LGBT Youth, and edits Bent Street. She received the Griffith University Medal, Association for Women Educators Award for Girls’ Education, and ATLAS International Institute for Qualitative Methodology Highly Commended Dissertation Award. Tiffany is the editor of Bent Street.

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