A groundbreaking survey into intersex Australians has shown high rates of suicide and poverty, along with a lack of information around invasive surgeries intended to “fix” ambiguous sex characteristics.

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Intersex is an umbrella term for people born with sex characteristics outside of typical understandings of male and female bodies. It is estimated that between 0.5% and 1.7% of the population are born with intersex traits, which can include atypical genitals, gonads and chromosomes.

The survey of 272 people, from the University of New England, is the largest survey of intersex people ever conducted in Australia. Co-chair of Organisation Intersex International Australia Morgan Carpenter told BuzzFeed News that most people find out they have intersex traits when they are children. Many undergo coercive medical and psychological treatment as a result.

According to Carpenter, medical intervention is too often about “fixing” bodies to fit typical notions of male and female, rather than focusing on medical need.

“The medical model is broken,” he said. “Medical intervention has been about constructing heterosexual men and women who are capable of performing sexually in ways that are seen as appropriate for heterosexual men and women.” Alarmingly, the survey found a majority of intersex people who had undergone medical treatment received no information on the option of declining and deferring treatment, while one fifth said they were given “no information at all”. One participant, known as James, was born with elements of male genitalia and raised as a girl. He underwent two genital surgeries in his youth, but wasn’t told that he had male genitalia to begin with or that they were being removed. James was left sterilised by the procedure. “I had felt insane because I dreamed I was a boy for so long and it was actually real and I went through it all for no reason,” he said. This coercive treatment eats away at mental health, with 19% of survey respondents indicating they had attempted suicide. However, Carpenter said, this alarming statistic was paired with a majority of participants rating their mental health as “good” or “better”, indicating a high level of resilience in the intersex community. The survey also found intersex Australians have an astonishingly high rate of leaving high school early, with 18% dropping out compared to 2% of the general population.

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