Intersex in Russia
Like in most countries of the world, in Russia intersex people are experiencing constant violations of their human rights, including the right to full informed consent, psychical autonomy, bodily integrity and self-determination. Intersex people in Russia are being subjected to unnecessary, irreversible "normalizing" surgeries and other interventions (that are often called IGM - intersex genital mutilation), which are conducted without any medical necessity and often without their full informed consent. These interventions are performed only on social and cosmetic grounds, in order to "normalize" their bodies and make them conform to social norms of male or female bodies. It's a mutilating and harmful practice that is often compared to torture.
These interventions also go against the Russian law N323-FZ “On the bases of protection of public health in the Russian Federation” which specifically says in the article 20 about full informed consent being a mandatory requirement for any medical intervention. By article 54 of that law children have to provide full informed consent since the age of 15, but that law is often ignored when it comes to intersex people.
There are no reports of existence of specific support groups for intersex children or their parents in Russia, usually they are not provided with any support. There is no existing legislation protecting the rights of intersex people in any way, and sex characteristics are not mentioned in any policies.
Intersex people are often sensationalized in the Russian media, with very few publications having a depathologizing approach and mentioning human rights violations intersex people are experiencing. Incorrect terminology like “hermaphrodite” is often used, along with incorrect misleading words like “intersexual” or “intersexuals”, which incorrectly makes intersex seem like a sexual orientation.
Non-consensual unnecessary surgeries on intersex infants are actually being mentioned in Russian media in a positive way by journalists, doctors and government officials, and are presented as the right and necessary thing to do. Sometimes they are mentioned as “sex change surgeries”. 5, 6, 7.
In May 2017 many Russian news outlets wrote about Italian surgeon Roberto de Castro, who performed a non-consensual and medically unnecessary surgery (clitoridectomy and vaginoplasty) on a 3-year-old intersex girl in Syktyvkar, Russia. The surgery was performed in «live-surgery» mode, meaning it was broadcasted to all the visitors of the "Current Problems of Pediatric Surgery" conference. About 50 specialists were present, many of them recorded surgery on video. The video of that genital surgery on a child was openly shared on the internet and in the media. Russian Ministry of Health posted an article on their website about the surgery, painting it in a good light.
During the first day of the conference Roberto de Castro performed two surgeries and was planning on performing several more during the conference, saying that: “It's also a great luck that the organizers did a tremendous amount of work and gathered here several patients with this rare disease. Level of surgery's difficulty is different, so the attendees of the conference will see the full spectrum of my method." Roberto De Castro is an author of his own method in surgically “treating” intersex variation called Congenital adrenal hyperplasia, and he performs demonstrative surgeries in countries all around the world, teaching other surgeons his method.
Talking about that surgery, Minister of Health of Komi Republic Dmitryi Berezin said that "This surgery means a lot for the whole Komi Republic. This fact that this surgery was performed says, firstly, about a high level of pediatric surgery in the region. And as pioneers in the sense of receiving unique knowledge, we must meet this level of experience".
We are deeply concerned about Russian government officials speaking out in favor of medically unnecessary surgery on intersex infants.
Very high number or articles in Russian media includes incorrect and pathologizing information about intersex people. In November 2017 Russian TV channel "Rain" released two videos on the topic of intersex related to the German Constitutional Court decision about a third gender marker for intersex people. 8, 9. Those videos used the wrong definition of intersex, and the first person that was interviewed about, Sergey Kiselyov only could remember 2 intersex variation out of (about) 40. The second person interviewed, doctor and professor Ayvar Fayzulin said outrageous things like “we need to make the baby's sex one or the other”, “those people need to be operated on, I have never heard a different opinion” and ”in the recent years there has been a 5-6 times increase in such mutations because of radiation and the food we eat”. No intersex activists or organizations were asked to be interviewed by the "Rain" channel. Our public response letter to "Rain" is available in Russian language here.
You can find many other examples of incorrect information and negative representation of intersex people in Russian media in our How NOT to speak about intersex people playlist.
Intersex variations in Russia are officially considered a disability. This supports the pathologization of intersex people, limits their chances of finding a job, chances of being adopted and possibility to adopt themselves in the future. But, on the other hand, it is useful for some intersex people since it allows them to get disability benefits.
Trans people in Russia are often denied transitioning and change of their gender marker if doctors find that a person has an intersex variation. In the Russian version of ICD-10 the description of the diagnosis "F64.0 Transsexualism" includes this text: "To diagnose this disorder it's necessary to have a stable transsexual identity overtime of at least 2 years, which should not be the symptom of any other mental illness, like schizophrenia, or an additional sign of any in-between sex, genetic or chromosome anomalies." 8.
The Russian Ministry of Health does not keep any official specific statistics related to intersex people (in medical settings - people with DSD - Disorder of sex development/НФП - Нарушение формирования пола) and medical interventions performed on them.
There were cases of FGM (Female Genital Mutilation) happening in Russia, and that practice was widely condemned by the Russian media. However, IGM (Intersex Genital Mutilation) and violations of intersex human rights are almost never mentioned in the media.
Most intersex people in Russia keep the truth about being intersex secret from others. There are very few out intersex people and activists in Russia - our co-founder Irene Kuzemko is one of them. In March 2018 Intersex Russia conducted our first intersex meeting in Moscow. In the future we're going to continue our community building work. Knowing that you're not alone is the first step to self-acceptance. If you're intersex and you want to meet other intersex people, please email us.
As a result of Intersex Russia's work and advocacy in Geneva, during the 30th Session of Universal Periodic Review of Russian Federation of the third cycle of Universal Periodic Review on May 14th 2018 Russia received our first specific intersex recommendation from Spain. Click for more details.
May 2017: participants of the "Current problems of pediatric surgery" conference in Syktyvkar, Russia are recording on their mobile phones broadcast of a surgery (cliterodectomy and vaginoplasty) being performed on a 3-year old #intersex girl. Surgery, done without any medical necessity.
Later video of that surgery would be posted online.
Ministry of Health of the Russian Federation will write about this surgery on their website, painting it as progressive and groundbreaking. Several news websites will write about it in the same manner.
Minister of Health of Komi Republic Dmitryi Berezin will say about it: "This surgery means a lot for whole Komi Republic".
Surgeon Robert De Castro, who performed the surgery, will say: "The most important thing is that the girl who went through this surgery could grow up a full-fledged woman, she later could create a family, have kids".
In the future the truth about surgeries that she received without her informed consent would most likely be kept secret from the girl.
This needs to stop. #intersexrussia
Small sample survey done in September 2016 about life experiences of intersex people in Russia and Post-Soviet Region shows that:
One third (36%) of participants had surgery without their full informed consent, many of them regret having those surgeries;
Many participants received no information or false information about their intersex variation (diagnosis) from their doctors and parents. The majority of participants wanted to find out that they’re intersex much earlier in life than they actually did;
The majority (73%) of participants defined their experience with the medical community related to their intersex variation as negative;
The majority of participants (64%) had problems obtaining their medical records, with two of those people never getting their medical records in the end;
Almost all (91%) participants have experienced bullying related to them being intersex at some point in their lives;
To this day all participants experience negative emotions when visiting a doctor on behalf of their intersex variation;
Most participants (82%) see intersex representation in the media in Russian language as negative.
When asked to name the main problems intersex community is facing in Russia, participants of the survey named among others:
Surgeries done without informed consent and medical necessity; pathologization;
Doctors providing no choice when it comes to choosing HRT (hormonal replacement therapy) for intersex patients - doctors choices are driven by outdated standards of medical care - gender identities strictly attached to each intersex diagnosis (variation), often ignoring person's own gender identity, medical needs and wishes. For example, people with complete and partial androgen insensitivity syndrome are usually perceived as female and are being prescribed only estrogen; people with Klinefelter syndrome are always perceived as male and are being prescribed only testosterone;
Bullying; shame, secrecy, stigma;
Difficulties with getting medical records for intersex people;
Lack of legal help and proper psycho-social help for intersex people;
Low quality and high price of medical services;
Lack of established intersex community and terminology;
Impossibility to change gender marker for people who are intersex and trans;
Selective abortions of intersex fetuses.