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.
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.
The survey suggests this enormous disparity stems from bullying and the impact of medical interventions during puberty.
“I nearly died of septicemia as a teenager, due to my genital surgery,” reported one survey participant. “I missed so much school I actually had to drop out entirely. It changed my whole life.”
Another person reported being bullied by a PE teacher, who accused them of being a drug addict after seeing needle bruise marks from medical treatment.
“The lack of any discussion of human diversity in sex education, in biology, in other parts of the curriculum has a negative impact on people,” Carpenter said. “There are consequences for the rest of people’s lives with unemployment.”
Poverty is also a stressor on the intersex community, with 63% of participants earning a yearly salary of under $41,000, and 41% earning less that $20,000.
“There is a lot of trauma, but we are capable of leading happy, resilient lives,” Carpenter said.
The survey found that peer support is crucial for the intersex community. "Meeting happy, healthy intersex people online caused a complete and radical shift in my thinking and wellbeing," wrote one person.
Carpenter also pointed to the diversity of intersex people when it comes to sexuality, with almost half of respondents identifying as heterosexual, 22% as bisexual, 18% as lesbian or gay, and other labels including queer, asexual and no label. Over a third selected multiple labels.
“We are so diverse, and it’s wonderful to see that in print,” he said.
“It really does show what we have in common. We don’t share a common sex classification, we don’t share a common gender identity. But we do share a common experience of stigma and discrimination.”