The first time Irene saw the BuzzFeed video “What It’s Like To Be Intersex” on her YouTube recommendations list, she ignored it. She figured “intersex” must just be another new queer label.
Then late one night when the then-21-year-old Muscovite couldn’t sleep, she saw it go by again. This time, though, she pressed play—out of boredom more than anything else.
“From the very beginning of the video, I was so shocked,” she told NewNowNext. “I was like, ’Oh shit, that actually sounds kinda like me.'”
“Intersex” is an umbrella term describing someone born with biological or genetic traits that don’t neatly fit traditional conceptions of male or female bodies. There are many intersex variations, which can be related to chromosomes, hormone levels, genitals or internal reproductive organs. Some variations are evident at birth, while others don’t reveal themselves until puberty or even later in life.
It was during her early teens that Irene first suspected she might be different than other teens: She watched as friends developed breasts and got their first periods, but neither benchmark came for her.
When she was 15 and still hadn’t begun puberty, Irene’s father took her to a medical center in Ukraine, where they lived. “Doctors in my hometown in Ukraine had no idea what to do to me,” she recalls. “At every visit I would lay down and they would put these electrodes on my belly to ’warm up’ what they thought were my ovaries. Later that year, I had appendicitis, which I think was the result of that treatment.”
Eventually, she was referred to a larger hospital in Moscow. She remembers, over repeated visits, being told to wait in a hallway while her father talked with physicians. “He was invited in but I wasn’t.” She once took a photo on her phone of the lonely corridor while she waited.
Afterward, her father told her she needed to have surgery, saying only, “Something is wrong with your ovaries, and if you don’t do the surgery you might get cancer.”
Irene had the procedure and began taking hormones. She started getting periods, but still never developed breasts, which made her feel insecure and alienated.
“All I really wanted was to grow breasts and go through puberty,” she explains. “I developed so much shame and hatred for my body. The years between 15 and 22 were really hard and depressing—I had a lot of suicidal thoughts. My doctors never explained anything honestly to me. When I would ask why my breasts still wouldn’t grow even with hormones, they always just told me I should eat more and it would happen.”
When she saw the BuzzFeed video, though, a lightbulb went off: Could being intersex explain what she was going through? She decided to get ahold of her own medical records and she discovered that the doctors—and her father—had been lying to her and her mother for the last seven years.
“You never doubt your doctors or your parents,” she says. “You never think they’d keep secrets from you. You just trust them.”
Irene was diagnosed with a rare intersex variation called mixed gonadal dysgenesis: She had XY chromosomes and a functional uterus but, instead of ovaries, she was born with one internal testis and one piece of functionless reproductive tissue with bits of ovarian tissue in it.
She also learned that the surgery she’d had at 15 wasn’t to prevent cancer.
“Technically I was born with both testicular and ovarian tissue in my body. But nobody ever told me that I never actually had ovaries and that, during that surgery, they were removing my gonads completely.”
When Irene confronted her father, he insisted he’d done the right thing. (She no longer speaks to him.)
“Learning the truth was the best thing that ever happened to me. After all these years of not understanding what was wrong with me, for the first time in my life, I knew I wasn’t alone. It all suddenly made sense.”
Irene just turned 24, and since learning the truth, she’s become a champion for the intersex community both in Russia and globally. She’s assembled online resourcse about intersex issues, created a Russian-language intersex YouTube channel, and cofounded Intersex Russia, one of only two intersex organizations in the entire country.
She’s also gotten to meet several of the people featured in the Buzzfeed video.
Despite her newfound activism, Irene isn’t fully out as intersex: Most of her peers don’t speak English, the language much of her work is conducted in. But that’s about to change: Irene recently recorded a coming-out video in Russian as part of the Interface Project. It’s still being edited, and she says she’s equally excited and terrified about what will happen once it’s live.
“I’m always joking that even if I got killed for coming out, it would still be good for intersex awareness,” Irene says. “I hope that wont happen, of course, but I just don’t know what to expect—but I’m really excited thinking about everyone from my past who thought I was just a regular girl, like I did, finding out. I never knew you could have a female body and XY chromosomes or vice-versa. Everyone here thinks of mythical hermaphrodites with 2 sets of genitals. No one sees intersex people as real people, because they don’t know we exist.”
Russia’s infamous anti-gay propaganda law doesn’t officially apply to people like Irene, but intersex variations are stigmatized and sensationalized in Russian media. Irene recalls seeing news stories and TV shows about “monstrous hermaphrodites”—she keeps a playlist of those clips handy for when she “wants to get mad and get motivated.”
She also explains that strict traditional gender norms in Russia make it difficult for people to even act “appropriate” for their perceived gender, let alone trying to to live openly somewhere in between. “Every man is expected to be super masculine and strong,” she says, “and every woman is obliged to give birth to a bunch of children.”
Polls indicate nearly 75% of Russians believe homosexuality is “morally unacceptable.” “Most people don’t even understand the difference between being gay and trans, let alone any of the other letters in the LGBTQIA+ alphabet soup,” says Irene. “It’s all the same—just ’not normal’ and bad to them.”
Irene once tried to talk to her doctors about her anxiety over not developing breasts. But instead of being concerned about her mental health, she recalls, they worried she might be a lesbian.
“They all started interrogating me. They seemed so scared and started asking all these questions like, ’Do you like boys?’ ’Do you feel like you want to be a man?’ I was so shocked by the stupidity of the questions I didn’t even answer. I was seriously depressed and I hated myself, and it was like they just thought that as long as I still identified as female and heterosexual, it was all good.”
There is concern that Russia’s gay-propaganda ban could be applied to intersex people. “The Russian government wouldn’t take the time to differentiate. Especially if it seems like we’re trying to teach kids about it,” Irene says. “This law, like all laws in Russia, can be interpreted any way they want, so you never know what to expect. After I come out, I guess we’ll see how it goes.”
The persecution of queer people has made some intersex Russians wary of teaming up with LGBT advocates—even though, on the international front, a number of groups have added an “I” to their acronyms.
“Not all intersex people in Russia like to be included in the LGBT community,” says Aleksander Berezkin, founder of the Association of Russian Speaking Intersex people (ARSI). “When I first started reaching out to LGBT groups about intersex issues, some people said, ’What are you doing, that’s too dangerous—we don’t want to be considered the same as LGBT people.'”
Berezkin knows something about those dangers: He identifies as queer and intersex and, after getting involved in LGBT activism as a college student in Vladivostok, he was accused by a local newspaper of violating the country’s anti-gay propaganda law. He was harassed so much from both community members and local law enforcement that he fled the country for New York. (He’s currently seeking political asylum.)
His story has several things in common with Irene’s: His intersex variation also didn’t become apparent until puberty failed to arrive. And while he learned of his diagnosis directly from his physician when he was 17, like Irene, he received little comfort from his healthcare providers.
“My doctor told me, ’You are alone, you are not normal,'” he says. “He told me I should keep it a secret and never talk about my identity with anyone.'”
Being intersex is officially considered a disability in Russia, which means intersex people can receive government assistance to cover the cost of hormones or surgery. But the social cost is high: “Intersex people in Russia have to live in an atmosphere of silence, shame, and misunderstanding from an early age,” Berezkin says.
When Russian babies are born with intersex genital variations, doctors often perform surgeries in an attempt to “normalize them,” even if the procedure is medically unnecessary. Infant genitoplasties, which are usually irreversible and can cause lasting physical and psychological damage, are still commonly performed in the U.S. and Europe as well.
“In some ways, it’s certainly much easier to be intersex in the U.S. than it is somewhere as gender-normative as Russia,” Kimberly Zieselman, director of the intersex advocacy organization Interact, tells NewNowNext. “But when we’re talking about the core issue of medicalizing and trying to ’fix’ or ’gender refine’ children’s bodies, people in America are just as vulnerable as they are in Russia—or anywhere else with Western medicine, for that matter.”
In some cultures intersex babies are revered as spiritually exceptional. In others, like parts of Africa, they may be considered evil omens and killed as infants. In Russia, Interact sees forced infant surgery as the primary threat. “We’re not against surgery for people who opt to have it,” Zieselman says. “We’re just saying that unless surgery is medically necessary, we should let these children grow up with whatever healthy genital tissue they’re born with, and let them make that decision for themselves when they’re older.”
In June, three former U.S. Surgeons General issued a statement condemning the practice and urging U.S. surgeons to stop the practice. Germany, Switzerland, Australia, Chile, Argentina and Malta have all officially declared that infant genitoplasties are not medically necessary for healthy intersex babies, and in May, Portugal banned the practice outright.
Berezkin and Irene are hopeful that, one day, Russia will follow suit. But there’s a long road ahead: In March, a Russian Ministry of Health article praised infant genital surgery as “groundbreaking.” And funding for organizations like Intersex Russia and ARSI remains a major challenge. Little data exists on intersex people in Russia (and much of the rest of the world, for that matter), making it hard to procure grant money from international NGOs.
Both groups have found support from international intersex advocacy groups, but even that movement is really just beginning to take shape.
“Many members of the international intersex activist community meet each other at conferences a few times a year now,” Zieselman says. “It’s not as often as we might like, but we’re also in constant communication, mostly on Facebook. People all over the world are sharing their stories, updating each other on their activism, and supporting one another.”
Thanks to the increasing availability of the internet in remote corners of the world, international cooperation around intersex rights issues has really begun to take off in the last few years. For both Berezkin and Irene, even just realizing they weren’t alone was life-changing. And they want that for other intersex Russians who don’t speak English.
“Discovering that there are not only other people like me in the world, but also many intersex organizations and a whole amazing movement, was such an amazing and liberating thing,” Irene says. “I found out about a huge problem in our society that almost no one knows about, and that I may be able help change in the world. I’m just so lucky to have found my calling.”