Intersex Human Rights Australia

The lived experience of intersex people, and the intersex movement, have many intersectionalities with experiences of disability and the disability movement. This intersectionality is well understood by IHRA, with a long history of co-operation with disability organisations, but it is otherwise poorly recognised.

Intersex people are born with physical sex characteristics that don’t fit medical and social norms for female or male bodies.

Intersex is always congenital and can originate from genetic, chromosomal or hormonal variations. It is a relatively widely understood umbrella term for a large number of variations such as Androgen Insensitivity Syndrome (AIS), 5 alpha reductase deficiency (5aRD), congenital adrenal hyperplasia (CAH), 47,XXY (sometimes called Klinefelter syndrome), hypospadias, gonadal dysgenesis, vaginal agenesis, Mayer-Rokitansky-Küster-Hauser syndrome (MRKH). We recognise too that not every intersex person has a clear aetiological diagnosis as the genetic basis of many intersex variations are not yet understood.

The World Health Organization (WHO) defines “disabilities” as:

…an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.

Disability is thus 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. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers.

The WHO definition applies to intersex, in that the medical profession regards intersex people as having an impairment (“disorder”) in body function or structure, a “disorder of sex development”. These “disorders” are regarded as impairments in our body structures (genitals, gonads, chromosomes) or functions (adrenal glands, gonads, or other glands). Intersex traits may also be accompanied by other physical differences, infertility, or cognitive differences, and these may be similarly regarded.

Intersex people are medicalised, stigmatised and suffer discrimination due to our distinctive biological characteristics. Intersex variations affect perceptions of our realness as men or women. As a result, intersex bodies do not meet societal expectations and intersex people experience homophobia, ableism and other forms of prejudice.

Cultural, familial and medical attitudes towards our differences from sex norms govern which sex we are assigned, and what surgical and other medical interventions will be made to ensure we conform to those norms. Medical interventions seek to erase intersex differences. This is still an issue in Australia, and those same medical interventions have a lifelong effect.

Many intersex traits may be diagnosed prenatally, or pre-implantation during the use of Assisted Reproductive Technologies. Intersex traits may be framed as “genetic defects” and so, for some diagnoses, pregnancy terminations occur as frequently as 88% of cases. The ethics of de-selecting intersex traits using Preimplantation Genetic Diagnosis are a live issue.

These issues are often missed in discussions about intersex, intersex people and our needs. As Emi Koyama and Lisa Weasel stated in 2001:

[There is] a common problem within women’s, gender and queer studies: discussions about intersex existence are “stuck” at where it is used to deconstruct sexes, gender roles, compulsory heterosexuality, and even Western science, rather than addressing medical ethics or other issues that directly impact lives of intersex people… the truth is not that these discussions are “stuck” prematurely, but they are starting from a wrong place with a wrong set of priorities.

Avoidance of discussion of intersex physical, medical and health issues can serve to reduce intersex to biological trivia, “embarrassing bodies”, or a perceived identity issue, rather than intersex as “a site of intimate physical violation”, an issue of human rights and social justice. Focusing on more comfortable gender issues invisibilises intersex people, and privileges the needs of non-intersex people over the needs of people born intersex. Further, we may have specific health issues that are overshadowed by a focus on our physical sex characteristics.

Intersex people, and intersex-led organisations, need to be centred in discussions about intersex. As the disability movement states, we want “nothing about us without us”.

More information

This page is not intended as an introduction to intersex.

• We recommend our Intersex for allies leaflet as an introduction to intersex.
• Read more on intersex intersectionalities with other populations
• Submission on the ethics of genetic selection against intersex traits
• Statement on the Senate report ‘Involuntary or coerced sterilisation of intersex people in Australia’
• Defining intersex: Australian and international definitions.
• Resources listing – a curated list of key resources on the Intersex Human Rights Australia site.