Intersex health – presentation to Health in Difference conference
This is a plenary presentation given to the Health in Difference conference, organised by the National LGBTI Health Alliance, and held in Melbourne in April 2013.
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Listen to the audio, courtesy of Joy 94.9.
Health in Difference is the major Australian conference on the health needs of LGBTI peoples, organised by the National LGBTI Health Alliance.
Gina Wilson (president OII Australia) and Morgan Carpenter (secretary, OII Australia) made plenary presentations (unfortunately, Tony Briffa was sick and unable to make it to the event). Phoebe Hart (secretary, AISSGA) and Mani Mitchell (ITANZ) took part in a roundtable discussion with Gina and Morgan on Saturday 20 April.
Plenary presentation on intersex health by Morgan Carpenter
I’d like to give thanks to the people of the Kulin nations on whose land we gather and pay my respects to their elders past and present.
I’m going to focus on health issues, that will hopefully give you more clarity about our issues, and an awareness of the range of current actions – some of which we are working on as part of LGBTI and others that we’re working on alone.
Intersex is a term which relates to a range of natural biological traits or variations that lie between “male” and “female”. Intersex is always congenital and can originate from genetic, chromosomal or hormonal variations. It’s an umbrella term for a huge and diverse array of diagnoses.
Although intersex people in Australia use the word intersex ourselves, the term is contested. We are regarded by medicine as having a “Disorder of Sex Development”, or DSD, which affects our genitals, gonads, or chromosomes.
Clinicians often typically use DSD and some overseas patient groups often use “Differences of Sex Development”, but there’s no challenge to the disordering when they communicate with each other using the same acronym. There’s a consensus amongst intersex organisations in Australia to use intersex. There are no DSD organisations known in Australia or active here on the health and human rights issues I’m outlining in this presentation.
We are medicalised, stigmatised and suffer discrimination due to our characteristics, which affect perceptions of our realness as men or women.
Intersex is not about sexual orientation. We have as diverse a range of sexual orientations as non-intersex people.
Intersex is not about gender identity. We have as diverse a range of gender identities as non-intersex people. Any gender identity we prefer for ourselves is the “right” one.
Intersex people have non-heteronormative bodies. Intersex bodies do not meet societal expectations. Cultural, familial and medical attitudes govern to which sex we are assigned. Surgical and other medical interventions are made to ensure we conform to those norm. They are made to erase intersex differences.
We are defined by what is done to us, those of our class.
We are part of the LGBTI movement because of a homophobic response to our bodies.
Around 1-2% of the population are intersex (Fausto-Stering), which is comparable to the number of people with red hair.
Every individual intersex member of OII Australia has experienced some form of non-consensual medical intervention, including:
- Pressure to conform to gender norms and to be a “real man” or “real woman”.
- Involuntary sterilisation and clitorectomy (clitoris removal or reduction) as an infant, child or adolescent.
- Medical and familial pressure to take hormone treatment.
- Medical and familial pressure to undertake genital “normalisation” surgery.
- Surgical intervention that went outside the terms of consent, including surgery that was normalising without consent.
- Disclosure of non-relevant medical data to third parties without consent.
Clitorectomies, clitoral recession, and other genital surgeries, are carried out unnecessarily, without patient consent or regard for the full range of possible life paths. 1 in 10 people with 46 XX,CAH Congenital Adrenal Hyperplasia, will be raised as women and go through infant clitorectomy – but change assignment later in life.
Surgery is not just on infants. Sterilisations are typically carried out on adolescents, on the basis of inflated claims of cancer risk with Australian studies quoting upper bound rates of 30% to 50%. Overseas studies quote risks from 0.8 to 5% in the case of AIS. The lifetime risk of breast cancer in women is 12.2% according to the US National Cancer Institute – but we don’t routinely remove women’s breasts on the basis of that cancer risk.
Sterilisation turns us into lifelong patients, even if it’s the only intervention carried out: we need HRT, oestrogen and/or testosterone for the rest of our lives, with consequental, not fully understood risks.
The impacts of surgery can be seen in a high prevalence of lack of sensation, repeat surgeries, infertility, scarring, painful intercourse, depression and trauma. These issues are pervasive, and lifelong.
As a rule research on intersex people is conducted by non-intersex clinicians, based on small samples and case studies of people who have been treated by the institution conducting the study. There is sample bias, and selection bias. There are only one or two pilot studies that look long term across multiple institutions.
Of those pilot studies, Schützmann et al, 2007, found:
prevalence rates of self-harming behavior and suicidal tendencies … comparable to traumatized women with a history of physical or sexual abuse.
In a 2005 study of adult people who had been treated as patients at the Royal Children’s Hospital in Melbourne – treated according to their own protocols, in their own hospital – the intersex cohort “were similarly as distressed as a comparison group of chronic somatically ill persons” (somatically ill means bodily ill).
The rationales for surgeries are often based on individual case studies, not broader evidence. The origins of treatment protocols are with a now discredited theory by Dr John Money. He developed his theory on the social construction of gender in the David Reimer case, of a boy raised as a girl after a botched circumcision. He claimed the experiment was successful, when it actually wasn’t.
Genital surgeries are done for psychosocial reasons: a “normal” appearance is deemed desirable to enable adjustment to society.
A foundational 2006 Consensus Statement on Intersex by a group of clinicians that coined the term DSD defined psychosocial rationales for surgery as: “minimizing family concern and distress” and “mitigating the risks of stigmatization and gender-identity confusion”.
There has recently been movement on this.
The Swiss National Advisory Commission on Biomedical Ethics apologised in November 2012 for past treatment, and called for an end to surgery for psychosocial reasons with criminal sanction. They say:
Treatment needs to be carefully justified, especially since – in functional, aesthetic and psychological respects – surgically altered genitalia … are not comparable to natural male or female genitalia.
There is no guarantee that a decision which is good for the child in its current state will also be best for this person in puberty or adulthood.
If… interventions are performed solely with a view to integration of the child into its family and social environment, then they run counter to the child’s welfare.
…all (non-trivial) sex assignment treatment decisions which have irreversible consequences but can be deferred should not be taken until the person to be treated can decide for him/ herself.
Reporting on 1 February, The UN Special Rapporteur on Torture talked about intersex, and also on reparative therapies on gay men and lesbians, and the sterilisation of trans people. On intersex he said:
77. Children who are born with atypical sex characteristics are often subject to irreversible sex assignment, involuntary sterilization, involuntary genital normalizing surgery, performed without their informed consent, or that of their parents, “in an attempt to fix their sex” leaving them with permanent, irreversible infertility and causing severe mental suffering.
These treatments were described as a form of torture.
Victoria has a new framework protocol for Intersex children, also published in February by the State Department of Health. I thought paper copies were going to be available here, but they’re not. We (at OII Australia) wrote a lengthy response, and the Alliance has written a 2-page letter available here [at the conference] that distils the same concerns.
The framework is the state of the art in Australia. With clinician support it uses the word intersex rather than Disorder of Sex Development. But it references a “debate” about surgery for psychosocial reasons. It says:
Some advocates for intersex people now firmly argue that protection against potential psychosocial stress associated with looking different alone should no longer provide a satisfactory rationale for surgical intervention, and no longer provide a basis for characterising a treatment as therapeutic.
Irreversible surgery to make patients’ genitals “look consistent with the norms of their assigned gender” is still the standard protocol where there is “more certainty about future gender identity”.
We don’t believe there are any situations where there is real certainty about future gender identity.
So, psychosocial rationales are focused on the mitigation of stigma and discrimination, but they unfairly place the burden on the intersex person to adapt.
‘Looking different’ is a human characteristic, and different ethnic appearances are often associated with discrimination and poor health outcomes. We don’t require people to modify their appearance as a result; we try to tackle the discrimination.
Other health issues include terminations, and prenatal preventative treatments.
We have evidence of terminations on grounds of intersex going back to 1989 arising from amniocentesis testing. Where it is introduced for an intersex variation, it leads to a reduced number of live births.
Terminations happen because many intersex diagnoses are defined as genetic disorders – even though the problems with intersex bodies commonly lie in the minds of non-intersex adults.
CAH, Congenital Adrenal Hyperplasia, is one variation that needs active management. It’s an adrenal condition that requires simple but lifelong treatment. In women, it’s also associated with higher levels of prenatal testosterone, and a degree of “virilisation”. And the virilisation is considered far more of a concern than adrenal insufficiency, salt wasting.
In 1999, Columbia University psychologist Heino Meyer-Bahlburg in the US published a paper entitled “What Causes Low Rates of Child Bearing in CAH?”; CAH women are fertile:
CAH women as a group have a lower interest than controls in getting married and performing the traditional child-care/house-wife role. As children, they show an unusually low interest in engaging in… maternal play, motherhood…
Meyer-Bahlburg proposes that “treatment with prenatal dexamethasone might cause these girls’ behaviour to be closer to heterosexual norms”.
In an analysis that clearly shows the homophobic nature of these concerns, bioethicist Alice Dreger tells how Meyer-Bahlburg and Dr Maria New of Mount Sinai School of Medicine in NY published research in 2008 stating:
Most women were heterosexual, but the rates of bisexual and homosexual orientation were increased above controls… and correlated with the degree of prenatal androgenization.
Dreger describes, in 2010, New and a fellow paediatric endocrinologist were, “constructing low interest in babies and men – and even interest in what they consider to be men’s occupations and games – as “abnormal,” and potentially preventable with prenatal dex”.
In 2012, Dreger, Feder and Tamar-Mattis published a lengthy study on the ethics of dex, finding that:
U.S. National Institutes of Health have funded New to see whether prenatal dexamethasone “works” to make more CAH-affected girls straight and interested in having babies.
The risks are serious, despite treatment being sold to parents as “safe” and “effective”.
We also have significant health issues as adults:
Trauma and physical issues arising from early or non-consensual interventions.
Surgery does not make us normal.
Accessing adequate healthcare can be an issue for us as adults.
And adults are subject to the same pressures to conform to societal and medical expectations. In my own experience, I’ve been pressured to take testosterone to become a real man. I’ve had non-consensual outcome from one of four surgeries within 4 months, just a year after diagnosis as an adult.
In addition to non-consensual interventions our members have had situations where there was:
- Failure to adequately treat an issue because only issues relating to our legal gender were explored.
- Declined Medicare cover for treatment considered inappropriate for someone of our legal gender.
Treatments as adults that are deemed to be aligned with legal sex generally proceed without counselling or support. These treatments are as life changing as treatments considered to be “cross sex” treatments.
Even where counselling is given, the assumptions about what is appropriate can be inappropriate. OII Australia member Michael Noble says:
Around the age of 23, an endocrinologist discovered that my body had never produced enough testosterone for me to undergo a full puberty. He therefore suggested I commence testosterone therapy. Initially, I resisted the pressures placed on me to commence therapy. Yet, eventually, I crumbled under the constant onslaught of threats and horror stories of what my future would be like if I didn’t undergo therapy, which the doctors claimed would turn me into a ‘real man’. It was insinuated, even blatantly stated on occasions, that my life would be worthless; that I would be a freak; that I would never achieve my potential, and that I would never have any self-esteem (apparently the self-
esteem I already had was invalid as it existed outside of the predefined paradigm of being a real man). So, eventually … I began testosterone therapy.
Michael found it to be a horrifying experience.
Testosterone therapy generated profound and traumatic changes. I lost contact with who I was and thus my sense of self.
He was mortified with the physical changes.
I lost contact with my heart … Worst of all…that the therapy turned me into someone I was not”
Treatments that are not aligned with legal sex result in diagnosis as “disordered” or “dysphoric”. Such diagnosis is based on the inaccurate assumption that one set of gender-affirming treatments is necessarily more valid or appropriate than another.
This obviously affects intersex people who have had one assignment surgically reinforced, but who later change assignment. Numbers of intersex people doing that can vary from 8.5 up to around 40% depending on their intersex diagnosis.
It also affects intersex people who are comfortable in their assignment. For example, a person with AIS has XY sex chromosomes, more typically associated with men, yet their bodies develop partially or mostly along female lines because of the different way their body respond to androgens. People with AIS will have testes, rather than ovaries, but their natural external appearance will vary. If their testes are retained, women with AIS can avoid the necessity for any HRT and will go through a natural female puberty, developing female sex characteristics.
But when they are sterilised, women with AIS are not offered a nature-identical replacement for the hormone that their bodies produced. Because they are women, they are only offered oestrogen, the hormone produced by ovaries. Women with AIS who wish to replace the hormone they used to produce with a nature-identical hormone, testosterone, are considered to have “gender identity” issues.
The Senate is currently conducting an Inquiry on sterilization and sexual health of people with disabilities, and also intersex people. The submissions and transcripts from a hearing in March are well worth reading if you want to find out more about the intersex experience. We detail much more about all those experiences.
We’re trying to reframe the debate: intersex is a human rights issue.
Along with health issues, accessing services and employment can be an issue for us as adults.
I’ve had to obtain medical tests not covered for someone of my social gender. I had to provide my employer with medical data when moving to Australia.
The most obviously different of us are the most vulnerable.
The Senate report on the Human Rights and Anti-Discrimination Bill recognised that intersex is a biological characteristic, and should be covered by a separate attribute, “intersex status”. That’s now part of the Sex Discrimination Amendment working its way through parliament.
We think the new language and first ever recognition in Australian legislation will help change how the debate is framed and how intersex is talked about.
We’re still trying to raise awareness and create understanding.
Identity regulations are low on our list.
X passports have now been around for over 10 years – because a Victorian, Alex MacFarlane challenged the Howard government in 2002 on the basis of Alex’s non-specific Victorian birth certificate (access policies were improved in 2011).
Intersex people in eastern states can change birth certificate details on the basis of an administrative error at birth.
New and pretty good federal guidelines are currently matter of public consultation.
So what do we want?
- We want respectful treatment that is based on actual need not assumed need. On our actual bodies, not those of our assumed gender.
- We want a society where issues of gender and sexuality are not problematised.
In terms of our place in LGBTI:
- We would like lesbians, gay men and trans people not to extrapolate our experience or needs from your own experience or needs.
- We welcome a shift from homogenising language like “sex and gender diversity” to terminology that is more specific, targeted and unambiguous, and we welcome the use of the word intersex to describe us and our needs whenever it’s relevant.
Adding the I onto LGBT is not just about changing your language, it’s also about changing your frame of reference.
Intersex people experience homophobia differently, not because of our identities but because of our bodies.
We belong here because of that, and want to be included in LGBTI health initiatives – but on the basis of understanding and with our full participation.