non-consensual Surgical intervention on intersex people has long been the status quo. Now, intersex advocates are standing up for the right to control their own bodies.
Genital ‘normalisation’ surgeries have become common procedures on infants and adults with intersex traits since the 1950s, and although these procedures are still common today, advocates say they are outdated and causing more harm than good. So what exactly does it mean to be intersex and what does the evidence say about surgical intervention?
Although intersex characters have featured in popular culture (think Ken and Amy in Freaks and Geeks back in 2000), and being born with intersex traits is as common as having red hair, intersex people are still a misunderstood and marginalised group with a high risk of poor mental health and suicide.
Misconceptions and misinformation about intersex are rife, and do little to advance the rights and quality of life for people born with something so common as intersex traits. For example, many people assume that being transgender and being intersex are the same thing, when they are separate groups that face different challenges and forms of discrimination. Trans people are typically people who are born female or male, but identify as the opposite gender and may choose to undergo hormone therapy or sex reassignment surgery, whereas intersex people have anatomy that is not considered typically male or female.
There are at least 40 variations of intersex traits that we know of, but due to a lack of population figures and data for people with intersex variations, there may be many more. What it means to be intersex differs from person to person; some may have no visible anatomical differences, and some people can even go their entire life without knowing they are intersex.
Intersex activist and president of Organisation Intersex International Australia (OII Australia), Morgan Carpenter, was an adult when he was diagnosed with intersex traits and was encouraged to undergo multiples surgeries that left him confused and depressed.
“I had the first surgery and it felt like I was on this kind of rollercoaster that I couldn’t really get off and I wasn’t really in charge of… It was very damaging,” said Morgan.
It wasn’t until he found a website and support group called Bodies Like Ours (which is no longer operational, but has been replaced by sites like this one) that he began to deal with the physical and mental trauma of the surgeries, which he said “was worse than the initial physical difference”. He now spends much of his time raising awareness for intersex rights, and speaking out against surgical intervention.
Morgan isn’t alone in his experience. A recent Australian study, which is the largest study ever conducted on the long-term effects of intervention, shows that many of the participants reported “various physical, mental and psychological impacts from treatments.” Even more worryingly, the study found that “one-fifth of the participants had been given no information at all about any surgical or hormonal treatments they had received and the majority were not told about risks related to the interventions, their right to not have these often life-changing treatments or other related information.”
This is where the problem with intervention lies, as it is not the surgery itself that poses harm but the lack of informed consent — particularly where infants are involved, as there is a distinct risk of assigning the wrong sex.
With such high risks to mental health, it is worth considering just why surgical intervention is practiced and how medically necessary the procedures are.
During a Senate Inquiry in 2013, the OII Australia pointed out that “clinical practice is still based on inconsistent assertions of psychosocial risks and benefits and cancer risk,” and it is generally accepted that non-intervention rarely poses a health threat. Therefore, it seems the only justification for intervention is that ambiguous genitalia may result in psychological harm, yet studies are now showing that intervention itself is much more likely to cause harm.
This is why organisations like OII Australia are pushing for more research to be done in this area, and why in 2013 a number of intersex organisations agreed on a common statement that calls for the end to unnecessary or coercive medical treatment. This statement echoed the recommendations of a Senate Committee report on involuntary or coerced sterilisation of intersex people in Australia, and was supported by a United Nations report on intersex rights.
However, despite acknowledgement from intersex organisations, and even clinicians on the lack of justification for these surgeries, these procedures are still being performed on children and patients who are inappropriately informed, which Morgan says is due to inertia in the medical profession and a lack of long term-follow up of individual patients due to the structure of our medical system. This is why he believes that long-term studies in this area are so important.
“In Australia ... the medical profession is broken down into so many categories, like pediatric medicine, genetics, endocrinology, gynecology, that don’t cover the whole lifespan of a patient, and when you don’t cover the whole lifespan, you don’t tend to see the adult consequences of early interventions,” said Morgan.
In the meantime, society still has much to learn about LGBTI issues. For example, Morgan recalled how historically people viewed being transgender as synonymous with being gay or lesbian. “People are only now beginning to understand that being transgender is different to being gay, or lesbian or bisexual, and being intersex is different again”.
And because many of those diagnosed as intersex identify as either female or male, advocates like Morgan see viewing intersex as a third sex as unhelpful, and a form of ‘othering’. Instead, he believes we should allow people to choose their own identity and not view being intersex as a problem. “Instead of viewing people with intersex traits as being boys or girls with a disorder, we should instead reassess society’s narrow expectations of what is normal for girls' bodies and boys' bodies”.
Though the idea of changing society’s expectations of what is normal may seem like a lofty goal, there are many groups like OII Australia who are challenging the status quo every day with the hope that the medical profession and policy makers will follow suit. As we have seen with other LGBTI issues around recognition and acceptance, progress takes time, and in time we may hopefully see a change in how the intersex community is treated and perceived, as well as the eradication of unnecessary, uninformed or coerced surgical intervention.
Edited by Deborah Kane, and sponsored by Cathy Cavallo