Submission to the Australian National Human Rights Consultation

15 June 2009

Organisation Intersex International Australia’s Submission to the National Human Rights Consultation

Organisation intersex International (OII) is the world’s largest intersex organisation. It is the only intersex organisation that is made up of, predominantly, intersex individuals with 98% of our membership identifying as intersex.

Organisation Intersex International Australia is the Australian arm of OII.

OII has members on every continent and is represented in at least 14 languages.

Intersex can be thought of as congenital differences in which the development of chromosomal, gonadal, or anatomic sex is atypical. That is, where there are physical differences that can be seen as both male  and female at once, not wholly male  or female, neither male  or female, or other ways of being that are not captured by current sex binary nomenclature.

Intersex does not indicate sexuality. Although most intersex people are heterosexual, many intersex are gay, lesbian, bisexual, celibate or others.

Intersex does not indicate gender. Though most intersex are men or women, many are transgender, pangender, non-gender, multigender, and more.

Intersex is about sex diversity. Most intersex are male and female, some are intersex, asexual, Hijra, twin-spirited, and more. All intersex people have physical sex differences.

Some underlying diagnoses that can lead to intersex are Congenital Adrenal Hyperplasia (CAH), Androgen Insensitivity Syndrome (AIS), Klinefelter Syndrome (KS), mixed gonadal dysgenesis, Turners Syndrome and more. There are more than one hundred diagnoses in the literature that can underlie intersex.

Not all diagnoses that may lead to intersex always result in intersex. Congenital Adrenal Hyperplasia (CAH), one of the most common diagnoses, rarely results in intersex for individuals with XY chromosomes and only occasionally for those with XX chromosomes.

Not all intersex results in the binary sex expectations of the diagnosis. Many of those with Klinefelter Syndrome (XXY) are male  and live as men, some are female and live as women and some are neither. The diagnostic expectation is that all people with KS will be men.

Intersex is human differences that challenge conventional notions of male  and female and gender role paradigms.

OII Australia supports a federal Bill of Rights and amendments to the Australian Human Rights Act that ensure equal rights for all Australians. OII Australia asks that when that Bill is drafted or those amendments are made that inclusive language is used and that the word ‘intersex’ is included in that language.

OII Australia maintains that where simple language is used it is seldom interpreted to mean things other than male or female, man or woman.

We ask that legislation includes sanctions against the discrimination and vilification of intersex people and that intersex people receive rights at law as intersex.

Some rights that specifically effect intersex are…

The right to genital autonomy:

That is the right of any individual to govern how their genitals are treated. The right to accept or refuse genital surgery, the right to decide on the extent of that surgery, and the right to be fully informed about surgery and outcomes. The right to have apparently different genitals without prejudice.

The right to appropriate health care:

Intersex, more than most, requires client-based health care. Many intersex differences have treatment paradigms that do not concur with individual intersex differences. Some XXY individuals do not go on to become male despite a treatment paradigm which insists that they do. Those who do not conform to this paradigm live a hell of inappropriate testosterone treatments and forced gender role conformity. The same is true of 5 Alpha Reductase where those so diagnosed are thought to go on to be male post puberty. OII contends that up to 40% do not and those 40% are subjected to the misery of a gender role that is impossible for them to live and a gender denied, consequently access by them to appropriate medical treatment is nearly impossible. OII Australia has a member who nearly died from a misdiagnosed ovarian cyst. It was thought our member, who indicated ‘intersex’ on their admission papers, was male  and that males could not have ovaries.

The right to appropriate medication:

Where treatment protocols call for standard medication treatments, those who do not fit the diagnosis paradigm cannot readily access appropriate medication. For instance a diagnosis that classifies an intersex person as male will not allow that individual access to apparently female medications despite the person being female. Medicine often assumes standard sex and gender outcomes for intersex, so that a person who has an AIS diagnosis is always assumed to be female. Access to surgery and medication for that person as a male can only be had by being diagnosed with a mental illness. Some intersex individuals need antiandrogen medication. Because those medicines are not recognized treatments for the specific diagnosis the only path to that medication is to register the intersex person in question as a potential sex offender at the Therapeutic Goods Administration in Canberra. That register also contains the names of numerous transsexual individuals who can only gain access to antiandrogens because of this inappropriate medication protocol. This is an outrage against those who are different!!

Your right to access services regardless of your race, sex, gender, age, disability or differences:

Intersex people are often subjected to discrimination because of our differences. We are often subjected to homophobic, transphobic and intersexphobic discrimination all at the same time. Even where legal precedent gives us rights, we have been placed in positions where those rights have to be relitigated.

The right to appropriate identifying documentation and the right to have that changed when a mistaken assignment was made at time of birth:

Currently intersex individuals who reject their birth assignment are regarded as mentally ill and diagnosed with GID-NOS (Gender Identity Disorder not otherwise specified). This diagnosis assumes that despite physical differences, despite the fact it is not known with any certainty how the mind informs itself of the body’s sex, despite the uncertainty of long term outcomes for intersex people, the assigning medical practitioner is always correct.

Those who reject the assignment are therefore deemed to be mentally ill. For intersex, sex designation on birth certificates should be changed on the basis of a mistaken assignment at the time of birth. This should be allowed at any time the intersex individual becomes aware of that mistaken assignment and is in a position to request the change. OII Australia disputes the necessity for sex markers on any documentation save for some medical documentation where physical differences are a matter for attention. Intersex demonstrates the uncertainty and undefinable nature of sex binaries. By and large sex markers act in a way that disadvantages women and to a greater extent those who do not meet binary expectations.

Intersex should have the the right to their sex and to their bodily integrity. No person should be allowed to force sex assignments and genital reconstruction on anyone. All people should be free to be the sex they know themselves to be. No child should be subjected to genital surgery, save for life preserving surgery, until that child is in a position to give free and informed consent. Every person should have the right to refuse surgery however uncomfortable society might be with body parts that do not conform to expectations.

The right to be free from cruel and degrading treatment:

From birth to death intersex can be subjected to an array of cruel and degrading treatments. Intersex people can be assigned a sex and then subjected to surgeries to affirm that assignment. Such surgeries are rarely without complications and usually require extensive follow up surgery as the child grows. Some surgery where neo-vaginas are created or vaginal modifications are performed require daily vaginal dilation – this is performed on children as young as two years of age. The surgery is cosmetic and performed to satisfy societal and parental expectations of genital appearance. The child has no part in the irreversible decisions being made. Surgery is followed by extensive gender reinforcement where the child is encouraged to behave in ways appropriate to the assignment and discouraged away from gender behaviour that is apparently at odds with the assignment.

The child may be photographed and medically inspected, then written up and displayed in medical journals. Many intersex who have received these treatments have vivid memories of them, were humiliated by them, and suffer long-term trauma as a result. The surgeries are largely experimental in that surgeons try to incorporate advances with every new case and no two intersex people are identical in any event. There are no long term follow ups of intersex surgery, no medical researcher has spoken to any significant number of intersex adults, and when they are spoken about they are rarely beyond the age of twenty.

The consequence of these interventions in our lives can be humiliating, cruel, degrading and without any possibility of undoing what has been done. Surgeons are unable to say if the adult intersex person would be disadvantaged by the surgery and if the resulting sexual sensation is inferior.

Intersex right to privacy and the right to all medical and legal documentation:

Intersex births are treated as a social emergency where parents and doctors rush to ‘cure’ the noncompliant bodies of newborns. The birth of intersex people is still not notifiable and there is no accurate way to know how many intersex who are subjected to surgery are born in Australia each year. The shame and secrecy present at birth extends into the child’s adult years, so that when an adult intersex person seeks to discover the circumstances of their birth they are unable to find records of those events. The records are often withheld or destroyed. Intersex people must have the right to access those documents, to read and reveal that which they will, and to have access and the contents of them denied to any person without the express consent of the intersex individual.

The right to be treated equally by the law:

Though intersex people enjoy some protection at law when a given intersex person is seen as a man or a woman, as male or female, an intersex person enjoys no legal or human rights protection when that person is seen as intersex. Intersex individuals have to choose the designation of ‘man’ or ‘woman’ to marry, to have rights to superannuation, or to have a birth certificate. Intersex people are forced to collude with the fiction that there are only men or women, males or females. Intersex must be included in sex discrimination legislation and human rights laws as intersex. Currently such laws refer to gender diversity and sexuality, but neither of these terms apply to intersex. Only the term ‘Sex, Sexuality and Gender Diversity’ is broad enough to describe us all and only then when sex is defined as more than simply men or women, males or females.

OII Australia has read and endorses the submission made by the Australian Coalition for Equality.

OII Australia has read and endorses the submission made by SAGE Australia.

OII Australia has read and endorses the submission made by Chris Somers, xxy.

Gina Wilson

Organisation intersex Australia