Intersex and the Organisation Intersex International Australia

by Gina Wilson

(The Gender Centre advise that this article may not be current and as such certain content, including but not limited to persons, contact details and dates may not apply. Where legal authority or medical related matters are cited, responsibility lies with the reader to obtain the most current relevant legal authority and/or medical publication.)

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

Organisation Intersex International is the world's largest Intersex organisation. We have board members on every continent and members in more than thirty countries. We are repesented in more than fourteen languages and our membership is 98 per cent intersex.

O.I.I. was founded by Curtis Hinkle and established in Canada in the early 1990s when it was felt that other intersex organisations had failed, at a grass roots level, to include intersex in decisions about their lives. Because of our ability to communicate in many languages, initially English, French, Spanish and German, we have grown exponentially.

To understand the need for O.I.I. and our aims it is necessary to understand intersex.

Intersex can be thought of as congenital differences causing atypical development of chromosomal, gonadal, or anatomic sex is. That is, where there are physical differences that can be seen as simultaneously male and female, neither wholly male nor female, neither male nor female, or other conditions not covered by current notions of sex binaries.

Intersex does not indicate sexuality. Although most intersex people are heterosexual, many intersex are gay, lesbian, bisexual, or asexual. Intersex does not indicate gender, though most intersex are men or women, many are transgender, pangender, non-gender or other. Intersex is about sex diversity. Most intersex are male or female and some are intersex, asexual, hijra, twin spirited, and more. All intersex have physical sex differences.

Some underlying diagnoses that can lead to intersex are Congential Adrenal Hyperplasia (CAH), Androgen Insensitivity Syndrome (AIS), Kleinfelter Syndrome (KS), Mixed Gonadal Disgenesis, Turner's Syndrome and more. There are more than a hundred diagnoses that can underlie intersex in the literature.

Not all diagnoses that may lead to intersex 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 sex binary expectations of the diagnosis.

Many of those with Kleinfelter 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 K.S. will be men.

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

O.I.I. Australia was established to promote understanding of intersex, provide peer support and lobby for political change that would see intersex included in Human Rights legislation, provide protection at law for intersex and ensure intersex has legal remedies against discrimination and vilification.

We also seek to forge alliances when we have human rights and legal issues in common with other groups; we have been embraced and supported by G.L.B.T. organisations and included when those organisations describe themselves as G.L.B.T.I. Our experience has been that the "I" is often overlooked because there are few intersex willing to speak out but, when we do, we are welcomed. By and large our greatest obstacle is knowledge about intersex in the community at large and within G.L.B.T.

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

O.I.I. Australia supports the right to appropriate medication. Where treatment protocols call for standard medication, 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 person 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 A.I.S. diagnosis is always assumed to be female. Access to surgery and medication for that person as a male can only be obtained by being diagnosed with a mental illness. Some intersex individuals need anti-androgen medication. Because these medicines are not recognised treatments for the specific diagnosis the only path to that medication is to register the intersex person 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 anti-androgens because of this inappropriate medication protocol. This is an outrage against the sex and gender diverse!

O.I.I. Australia stands strongly against the pathologising of intersex. In August 2006 a number of pediatric specialists, pyschologists and others met in Chicago and wrote a "consensus statement" on the "management of Intersex disorders". This conference was initiated by the then Intersex Society of North America. It proposed to change the word "Intersex" for a new term, "Disorders of Sexual Development", a term coined by an I.S.N.A. board member. The consensus statement was not a consensus, only two intersex individuals were present and no person who might oppose the term was invited. O.I.I. rejects the pathologising of difference by referring to intersex as a disorder.

Very few intersex differences result in sickness; most intersex differences are simple physical traits. O.I.I. stands against the inclusion of intersex as a mental illness. Currently intersex individuals who reject their birth assignment are regarded as mentally ill and diagnosed with GIDNOS (Gender Identity Disorder Not Otherwise Specified). This diagnosis assumes that despite physical differences, despite the fact that 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, O.I.I. believes that sex designation on birth certificates should be changed where a mistaken assignment has been made 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. Mistaken assignments are made by well-meaning people who are often unaware of genetic or internal difference in the child they have delivered, but the assignment is mistaken nonetheless.

O.I.I. Australia disputes the necessity for sex markers on any documentation except 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.

O.I.I. Australia invites any intersex people, their allies and friends to join us. We have three international support groups and are in the process of establishing one here in Australia.

Contact O.I.I. Australia at:
P.O.Post Office Box 1553, Auburn N.S.W. 1835
Website: O.I.I. Australia Email: O.I.I. Australia

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