Today (26 October) is Intersex Awareness Day, a day for all those people whose bodies naturally differ from what’s expected of men or women. Once treated as a shameful secret, their medical records routinely anonymised or destroyed, intersex people are finally starting to have their voices heard.
More and more people have some awareness of the way that biology varies and feel that society should be more accepting. But damaging surgeries are still performed on healthy intersex infants in the UK today, and the promise is the same as it always was: “Go through this and you can have a normal life.” New research on intersex people’s experiences suggests that just isn’t true.
Research on intersex people’s experiences
“That’s not how life went for my participants”, says Dr Adeline Berry, a senior research fellow in the University of Huddersfield’s School of Human and Health Sciences. Working with older intersex people across Europe, they explored the trajectories of their lives to see how they compared to those of their peers, and what they found was shocking – even though, as they are quick to point out, this is a population with a 39% rate of attempted suicide, and they were talking to the survivors.
In an interview for Yorkshire Bylines, Berry explained: “At least one participant talked about having plans to end their life before reaching the point where they would be in elder care, because they lived their entire life in fear of what somebody else might think if they saw them naked.
“They’ve avoided relationships of any sort, even though their desire to have a family was there, their desire to raise children. All of that was taken away from them, not just by how they were treated as a medicalised person, but also by the lack of intersex awareness in society, their own lack of intersex awareness. Stigma, shame, hegemonic masculinity, all that stuff.
“There’s a lot of worrying about and living in fear of what medical providers might say when they need to be washed or changed or things like that in the future. A lot of isolation that begins pretty early with the intersex child being bullied within the home, treated as different regardless of being subjected to surgery, and then the ostracisation continues and follows them into school. So rather than guaranteeing normalcy, the surgeries don’t seem to do anything other than add the problems associated with surgeries to a trajectory of isolation and not fitting in and being different from others.”
Surgical damage, social isolation
Problems caused by surgery can include lifelong urinary incontinence, chronic pain, reduced sexual sensation and infertility. In some cases, surgery is necessary – for instance when a baby is born unable to urinate – but in other cases it is performed simply with the intention of making people fit in and look typically male or female. One of the problems is that, as this often involves multiple operations and other physically and psychologically traumatic treatment, it can, in itself, destroy children’s confidence. Many face ostracisation even within their own families, says Berry.
“Some of those who haven’t been rejected by their families are kept within reach as the disappointing failures in the family. ‘Why don’t you have the employment success your brother or sister [is] demonstrating? Why haven’t you given me grandchildren?’ And a lot of these things come back, directly and indirectly, to being intersex, like bullying in the workplace, not developing the same social skills in adolescence because you’re ostracised and isolated.
“You’re not in a position to jump in on a lot of the talk around sex and things like that because your body’s built a little bit different. And it’s not that you can’t be engaging in sex, but you don’t have any of the information appropriate to your own body.”
Family and connectivity
This is particularly hard for straight, cisgender people, they suggest, because LGBTQ+ communities provide alternative forms of family and are much more accepting of variety in sexual expression, but that kind of support isn’t so readily available elsewhere, as Berry explains.
“The surgeries are purported to guarantee connection in the family and connectivity, but whether my participants had had the surgery or not, they started off life with fractured relationships with their parents and siblings, and in later life, they still had fractured relationships with parents and siblings. The only exceptions to these really were where a participant was willing to let bygones be bygones and never talk about the past with their parents.
“Other than that, I had one participant who was the exception of the rule, and they maintained a close relationship with their sibling, and they maintained a close relationship with their parents up until their passing. And that relationship began with open communication and continued that way. And that child had the self-efficacy necessary to be able to navigate entering school with a body that would change drastically during puberty in ways that differed from those of their classmates.
“A lot of other participants, some of them were beaten by their parents for asking about what had been done to their bodies, or were so afraid of being re-hospitalised that they hid problems with their surgeries.”
The importance of intersex community
There is a widespread fear of ending up in elder care facilities where the staff are hostile, Berry says, but in some places, people are trying to find solutions.
“There’s efforts in Switzerland to build LGBTI+ care homes and also to certify care homes that are safe, and so there are groups of people going around inspecting and giving trainings and all that. You’re not impervious to discrimination in an LGBT care home, but it would be reduced somewhat, I would think, and those are probably less likely to be run by religious institutions.
“Intersex community is a really big thing. Many participants describe it as positively life changing, but there isn’t just stigma as a barrier, there’s also intersex invisibility. Our medical records are hidden from us when we’re young, so you’ve got people who are finding out that they’re intersex in their forties, fifties, sixties, seventies, and then they have to reach out and connect and find other intersex people to build community with.
“That’s something that’s really interesting to experience because you’ll be in a room with a bunch of people with different variations, from different countries, but we have enough commonalities that there is a lot of love, and there’s just a shared, often unspoken understanding amongst everybody. But a lot of people are deprived of it because they don’t know they’re intersex. All they know is that their bodies are different.”
Kleinfelter’s syndrome
Berry describes one person with Kleinfelter’s syndrome who spent a lifetime being told he was fat when he wasn’t – he just had the fat distribution common to people with XXY chromosomes, rather than a typical male body shape.
“I look now at the news where they’re talking about finding unemployed people who are overweight and subjecting them to Ozempic. There’s a fair chance a lot of Kleinfelter’s people are going to be subjected to Ozempic when what they actually need is access to diagnosis and adequate hormone treatment. But they may never know.
“So we’re just going to subject some Kleinfelter’s people to Ozempic and then possibly try to get them back to manual labour for which their body is not equipped because their muscles haven’t developed typically for somebody assigned male at birth, and they end up becoming disabled. It’s a whole mess.”
Speaking up and speaking out
Raising awareness makes a real difference, Berry explains, by helping people to ask the right questions about their bodies, get the right practical support, and find community.
“We already know that older people face a lot of isolation, and they may have family members that have died, or their kids have moved away. But if you’re intersex and doctors have robbed you of your ability to have kids in the first place, and possibly your opportunity for a relationship, and you may have been rejected by your family and so on and so forth, and you didn’t get to bond with other people during adolescence, that community is more important than ever. We have to break the silence. I mean, silence and secrecy is what has allowed so much abuse to proliferate.
“There’s the Catholic Church child abuse scandals, the Magdalene laundry scandals in Ireland, and it’s the same with this. I mean, we know [female genital mutilation] is bad. It’s banned in most places – unless you’re performing it on an intersex person, then there’s exceptions. And that’s the silence and the secrecy. A lot of it’s to do with shame around non-normative bodies. I think a lot of it is misogyny. There’s a lot of stuff in there, but we can get the stories out, break the silence, shine light into the darkness.”
