Opening statement at the Senate hearing on involuntary or coerced sterilisation

This is the opening statement by Morgan Carpenter, secretary of OII Australia, at yesterday’s hearing of the Senate Community Affairs Committee inquiry into involuntary and coerced sterilisation. It wasn’t intended to cover every issue, but rather its purpose was to set the scene.

The statement

OII Australia is a not-for-profit, human rights and peer support body, by and for intersex people. We employ no staff and receive no public funding.

We thank the Senate and the government for its attention to the sterilisation, and sexual health issues, of intersex people. These are pressing issues for us.

The World Health Organisation describes “disabilities” as including :

…an impairment is a problem in body function or structure; … Disability is not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives.

Intersex people are regarded by medicine as having an impairment: a “disorder of sex development” which affect our genitals, gonads, or chromosomes.

We are medicalised, stigmatised and suffer discrimination due to our characteristics, which affect perceptions of our realness as men or women.

Intersex bodies do not meet societal expectations. Cultural, familial and medical attitudes govern to which sex we are assigned. Surgical and other interventions are made to erase intersex differences.

Our submissions detail:

A structural inequality in the relationship between the medical and legal professions, and intersex people.

Sterilisations carried out on the basis of inflated claims of cancer risk. In this inquiry’s December hearing, a rate of 30% was quoted by Professor Grover, of the Royal Children’s Hospital, Melbourne. Gonads are removed because they “are non-functioning gonads or carry a significant malignancy risk.” A lose-lose scenario.

Pleskacova and Crouch quote gonad cancer risk levels for people with complete Androgen Insensitivity Syndrome, AIS, as between 0.8% and 5%, and in partial AIS as 15%. The lifetime risk of breast cancer in women is 12.2% according to the US National Cancer Institute. No doctor would remove a healthy infant’s breast buds due to that risk.

Our submissions show that clitorectomies, clitoral recession, and other genital surgeries, are carried out unnecessarily, without patient consent or regard for the full range of possible life paths. In non-intersex girls this is commonly decried as Female Genital Mutilation.

The Chief Justice of the Family Court referred to “The Welfare of Child A” in her submission. The judge consented to the sterilisation of a 14 3/4 year old boy, with his consent. As an infant with Congenital Adrenal Hyperplasia he underwent irreversible “genital reconstruction” in the postnatal period “to give her a feminine appearance”. The child’s clitoris was deemed too big.

There was no judicial comment – then or now – regarding that surgery. It’s the standard protocol; unremarkable. But Child A’s change in sex of rearing was not unusual. 8-20% of intersex people have gender issues as adults. Hughes, in 2006, found rates of up to 40% with some intersex variations.

Impact

Decisions in infancy have lifelong impact.

There are few long term studies, and little data – itself a cause for concern.

The impact of surgery can be seen in the high prevalence of lack of sensation, repeat surgeries, infertility, scarring, painful intercourse, depression and trauma.

In Warne, 2005, a study of 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).

Schutzmann, 2007, found: “prevalence rates of self-harming behavior and suicidal tendencies … comparable to traumatized women with a history of physical or sexual abuse”.

People who had sterilisations were “significantly more distressed, with depression being particularly increased”.

Recent developments

Intersex issues have begun to be addressed, internationally, and much less so nationally.

I’d like to give 2 quotations that speak specifically to the issue of the best interests of the child.

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:

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.

The Commission recommends that the determination of the child’s welfare should be based as far as possible both on the current interests of the child and on the anticipated interests of the future adult.

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.

Given the uncertainties and imponderables involved, a psychosocial indication cannot in itself justify irreversible genital sex assignment surgery in a child who lacks capacity.

…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.

A new Victorian framework document, best practice in Australia, fails to fully address psychosocial rationales for surgery.

Advocates for Informed Choice, a US intersex rights organisation, gave testimony to the UN Special Rapporteur on Torture, and also, this month, the Inter-American Commission on Human Rights. They say:

Doctors are also aware that there is usually no medical necessity for genital-normalizing surgery, and offer social justifications, believing that the abuse they commit is necessary to prevent future discrimination against children with bodies that challenge the norm. However, just as it is a violation of the child’s human rights to address parental discomfort through surgery on the child, it is a violation to address societal discomfort by the same means…

The unavoidable pain of surgery and the high risk of severe lifelong physical and mental suffering – from loss of sexual sensation and function, pain caused by scarring, infertility, castration, violation of bodily integrity, and irreversible surgical assignment to the wrong sex – would never be accepted by doctors or parents if the child did not have an intersex body. The belief that such high risk is acceptable for a child with an intersex condition … drives these human rights violations. The fact that there is no medical justification for the ill-treatment means that good intentions cannot prevent the treatment from constituting torture.

(The Swiss and AIC documents were formally tabled at this point; the Victorian framework document was also tabled at the end of the meeting.)

The treatment of intersex people is a human rights issue.

We’re not asking to end all surgical intervention, but we are asking for the end or delay of all surgery for psychosocial reasons, societal and appearance related reasons, so that an adolescent or adult can freely consent.

And surgery for cancer-related risks must be based on strong evidence specific to a diagnosis.

Download the Inquiry report on sterilisation and people with disabilities

Recent developments

OII Australia submissions

AISSGA and National LGBTI Health Alliance submissions

Clinician submissions

Documents tabled by OII Australia

More information