"Between the sexes": How do intersex people live in Russia
About those who are hiding behind the fifth letter in the extended abbreviation LGBTI, most people know almost nothing: the word "intersex" rarely pops up in public space and does not cause any associations. Unfortunately, the invisibility of intersex people, by their very existence challenging the division into the "beautiful" and "strong" half of humanity, has dire consequences: they are subjected to unnecessary mutilation, violence and discrimination. We talked to intersex people living in Russia and found out how people feel “between the sexes”.
Remember the scene of childbirth from any mass film: a reddened woman is breathing heavily, obstetricians are scurrying around, stress reaches the limit - and finally the first cry of a baby is heard, and the happy woman says: "You have a boy" or "You have a girl." We are accustomed to having two default options, and most often the child’s gender ceases to be a secret long before birth - as early as the 11th week on an ultrasound examination, an experienced doctor can see his first signs, and by the 25th floor they determine almost 100% by probability. Well, let's say that with ultrasound and other tests there were doubts. Then you will know the sex immediately after giving birth - if for some reason you do not understand yourself, this is a boy or a girl, obstetricians and doctors will always give the correct answer. Or not?
It sounds absurd, but at birth, a couple of millimeters of flesh determines the fate of a person: those children in whom obstetricians find a penis no less than 2.5 centimeters long are called boys, and those who have found a clitoris no longer than 1 centimeter are girls. Both the penis and the clitoris are formed from the same embryonic tissue - the so-called genital tubercle: from the 9th week of pregnancy, male and female embryos, previously indistinguishable, begin to develop differently, and by the time of birth the external genitalia of the fetus are most often look like "female" or "male." But there are babies whose genitals are in the same interval from 1 to 2.5 centimeters and clearly do not fit into the binary norm. These and many other children, who are not so different from "normal" boys and girls outwardly, are recognized as intersexes - people whose sexual characteristics do not correspond to the well-established notions of a "male" and "female" body.
The UN reference material says that 0.05 to 1.7% of children are born with atypical sex characteristics, but these data can be considered approximate and, most likely, underestimated, since reliable statistics on the number of people with intersex variations do not exist. The upper limit of this range corresponds to the number of people born with red hair - this means that you probably have seen intersex people more than once or have spoken to them personally.
The school textbooks on anatomy do not write that the set of chromosomes is not limited to the "female" XX and "male" XY: people may have the genotypes XXY, XXXY, X0, XYY, XXYY and others
The school textbooks on anatomy do not write that the set of chromosomes is not limited to "female" XX and "male" XY: people can have genotypes XXY, XXXY, X0, XYY, XXYY and others, and none of these combinations guarantees that a person will have a “typically feminine” or “typically male” body structure. The appearance of a person and his internal structure depend on many factors: in addition to the external genital floor, the signs of which are primarily the attention of obstetricians, and the chromosome floor, most often expressed in sets of XX or XY, the person has gonadal sex (testicles, ovaries, gonadal strands , ovotestis or the absence of all of the above), the internal genital (prostate or uterus) and hormonal, as well as the sex of the secondary sexual characteristics - these include the distribution of body hair, body type, timbre of the voice and skeleton structure. In fact, no one can be sure that he is a man or a woman until he passes a special analysis on the chromosome floor: this is the only way to find out whether the genes match the entries in the birth certificate.
In most cases, intersex people learn about their features much later than they would like. Some variations, imperceptible at birth, may occur during puberty, when a teenager notices that his body does not change at all or develops in a completely different way from his peers. For example, many girls with the Turner variation experience that they do not develop breasts and menstruation does not occur; parents take their daughters to a gynecologist, not knowing what a surprise they are waiting for.
Sometimes intersexes learn about their status at a mature age — for example, when they cannot become pregnant, or when they simply go to the doctor to check the stomach or kidneys. American activist David Cameron Strachan found out that he was an intersex when he was 48, and there are quite a few such cases: most of the older generation have learned about their features already in the era of accessible Internet, and some remain in ignorance all their lives. Millennials were lucky a little more, however, and today they face many problems: intersex variations are so stigmatized that parents and doctors go to great lengths to get rid of the "abnormal" traits of the child, often do not tell him about the diagnosis and unnecessarily endanger him physical health and psyche.
I was "lucky" to be born in a small village in Kazakhstan - wilderness and no medical care. A local paramedic announced to his parents that a boy was born. When I was ten, a doctor came to the village, who, after examining me, told my parents that my external genitals did not correspond to the “norm”. Unfortunately, for the next seven years no one examined me anymore, before the medical board from the military registration and enlistment office. The first thing I managed to get to Laura, who found me unfit for service. I took the certificate from him to the military registration and enlistment office, and scored the rest of the doctors.
I used to understand that something was wrong with me: my penis was clearly different from my brother's penis, when urinating often hurt, the urethra was slightly lower than the other boys, the lower abdomen on the right was often in transitional age. I was also disturbed by my sexual orientation and my character. I understood that I like boys more than girls, and my social behavior was more characteristic of girls. I struggled with this, I wanted to become a "normal kid." By the age of eleven I had doubted the existence of God, because he did not want to help me become more courageous, and at thirteen I decided that I was gay or bisexual. Now I already understand that I can not be gay or lesbian, because my gender is not fully male or female. For convenience, I call myself a pansexual intersex.
It is curious that I knew about the existence of intersex people before I realized that I myself belong to them. I looked at STS for some kind of documentary from the “strange bodies” series, and there was a female intersex - I don’t know why I remembered her, maybe I felt something intuitively, or maybe it responded in me, because at twelve I was worried that my chest was not growing. A couple of years in our school was a scheduled inspection, which led the entire class. I complained to the doctor that adolescence somehow does not overtake me yet. Then I came separately, I passed tests, and I was prescribed hormone therapy, and at fourteen had an operation - they removed the gonads because of the possible risk of cancer, although in fact there was no absolute testimony for surgery. The agreement was signed by my mother: the doctors advised her not to tell me anything, so I really didn’t know what operation I was done.
As a result, I found out about my peculiarity already at eighteen or at nineteen - when I looked at the series of “Doctor House” about a girl who turned out to be intersex. I thought the story of the heroine was suspiciously similar to mine, and decided to check my medical records. It was very disappointing that to me, already an adult, nobody has yet told me that I am an intersex. But in general, I took this information calmly - once I went to a psychologist, talked with her and made sure that the status of intersex will not affect my life plans in any way.
Up to 22 years old, I was sure that I was a girl by biological sex, and I learned about belonging to intersex people quite by accident. In adolescence, I did not have puberty at all. I felt terrible, wildly complex because I did not develop like other girls. Doctors in Ukraine, whom I addressed, did not know what to do, and advised them to wait. At fourteen, I was finally sent for an ultrasound. One ovary on the ultrasound was not found at all, the second, according to them, looked somehow strange. On this basis, I was prescribed warming to make the ovaries work. There were no results, but in the same year I had an attack of appendicitis - perhaps it was provoked by warming up. Since local doctors did not know what to do, they took me to doctors in Moscow. The doctors talked only with my father, I was always left to wait in the hallway. I only got bits of information from my father: "You have something wrong with your ovaries, there is a risk of cancer, you need an operation, you will start taking hormones." In the end, I had an operation to remove the gonads (at that time I didn’t even suspect that I would delete everything completely) and prescribed hormones. Over time, I had my period, but my chest didn’t grow.
A couple of years later, she looked at that same series of "Doctor House", where the patient found testicles in the abdominal cavity. When I somehow mentioned this series in a conversation with my father, he said: "You have something like that and it was." I was so amazed by these words that I could not even answer him.
When I was 22 years old, I watched the video of BuzzFeed "What it Like To Be Intersex" out of boredom and realized that it was very similar to me. I asked my father for all my medical certificates, from which I learned that I had male XY chromosomes and that I never had ovaries, instead of them there was an egg on one side, on the other - a gonadal cord (just a piece of tissue with ovarian tissue elements in him). Later, I called my doctor and she confirmed everything.
When I asked my father why he never told me the truth about my body, he left the answer: supposedly I thought I knew everything. When I pressed and asked again, he said: “I did the right thing, I didn’t say anything, I’m not going to apologize. I was advised to do this by two child psychologists. And I have never seen you feel sad,” although I was clearly depressed what I talked with him more than once. After my accusations, he stopped responding to my messages. My father also kept everything from her mother, and when she found out everything, it was a shock for her, but she reacted to everything with understanding and supports me in everything until now. I completely removed my father from my life.
Intersex are very different: some in all are similar to "ordinary" women, but they do not have a uterus and ovaries, others have a feminine body structure and genitalia, more reminiscent of men, some have androgynous appearance. But none of them have a “double set of genitals” - the existence of two full-fledged reproductive systems in one person is possible only in the myths, whence the word “hermaphrodite” came to us.
Most intersex are considered sterile, but some may conceive a child on their own or with IVF. The gender identity of intersex is also diverse: some define themselves as intersex women or intersex men, others call themselves non-binary people or agendors, others consider themselves women or men without the intersex prefix.
There are several dozens of intersex variations, and each of them requires a careful individual approach: the most common include androgen insensitivity syndrome, congenital adrenal hyperplasia of the adrenal cortex, hypospadias, Klinefelter syndrome, Svayer syndrome, mixed gonadal dysgenesis, ovotestis, Turner syndrome, nephritis syndrome, Turner syndrome, neonates syndrome, Turner syndrome, neonation syndrome, Turner syndrome, nephritis syndrome, Turner syndrome, neonates syndrome, Turner syndrome, neonation syndrome, Turner syndrome, neonates syndrome, Turner syndrome, neonates syndrome, Turner syndrome, nephritis syndrome, Turner syndrome, adrenal syndrome, and Turner syndrome. alpha reductase and Mayer-Rokitansky-Kuster-Hauser syndrome.
In addition to the atypical structure of the genitals, intersex may have many other features. Activist Emily Quinn notes that, along with the syndrome of insensitivity to androgens, she received peculiar "bonuses" like the complete absence of body hair and "childish" sweat, which has no odor. In her blog, Quinn told me that she did not use deodorant, and once for the sake of the experiment she did not wash her hair for a month - and looked quite normal. The case is inborn insensitivity to the "male" hormones responsible for the formation of sebum: Quinn's body has almost no odor and remains clean for a long time, like in children before puberty.
In poor countries like Nepal or Uganda, selective abortions and the killing of newborns with dual sexual characteristics are practiced.
Although most intersexes can grow up completely healthy without surgical interventions and complicated “treatment”, in most cases their communication with doctors turns into a real nightmare, and it begins before birth. Modern technologies make it possible to determine the risk of genetic diseases in the embryo - and this is great, but not for intersexes: the selection of embryos for IVF, among other chromosomal abnormalities, excludes embryos with intersex variations, although quite healthy children would turn out from them.
In poor countries like Nepal or Uganda, selective abortions and the killing of newborns with dual sexual characteristics are practiced altogether. But even in developed countries, intersexes cannot feel safe: doctors, who often have no knowledge of variations in sexual development, recommend parents of newborns with atypical genitalia to conduct “corrective” operations as soon as possible so that their child becomes “normal” and hormonal therapy prescribed to babies, unsafe even for adults. Contrary to the recommendations of the UN, doctors often do not tell the child or his parents the whole truth when making decisions about the operation on their own.
In Russia, people with "violations of the formation of sex" are assigned a disability. On the one hand, it gives intersex the opportunity to receive the necessary treatment and get tested free of charge, on the other hand, it worsens their position in the labor market: it’s no secret that it is more difficult for a person with a disability to get a job than officially healthy. There are other legal problems: for example, people diagnosed with “pseudohermaphroditism” cannot change civilian sex - this means that intersexes are forced to live with the sex they are given at birth, and cannot bring it into line with their identity. Intersexes who have chosen a sporting career face particular difficulties: the history of the South African athlete Caster Semeni, whose sex in the most offensive expressions was discussed by the whole world, is an example.
Today, the only country where intersex rights are fully protected by law is Malta: in 2015, they passed the world's first law prohibiting the conduct of operations and procedures to change the sexual characteristics of minors without their informed consent.
Even a perfectly performed operation is a big stress for the body, and many surgical interventions lead to complications, which have to be operated again and again.
Conscious, or informed, consent is a very important term in the context of the intersex community: some intersexes voluntarily perform operations (for example, vaginoplasty) and are satisfied with the results, but in most cases neither the parents giving consent to the surgical “correction” of the sexual characteristics of their child, nor the patients themselves are not aware of all the possible consequences or alternatives. Even an immaculately performed operation is a great stress for the body, and many surgical interventions lead to complications, due to which it is necessary to operate again and again. “Correction” of atypical genitalia and the internal structure of the genitals often leads to a whole bunch of unpleasant consequences: from loss of reproductive abilities, painful scars and the inability to have sex to depression and PTSD caused by “treatment” and tense situation in the family, where parents try their best hide the "abnormality" of your child. Intersex children’s operations, conducted without the patient’s informed consent and without medical necessity, are recognized as torture: the UN recommendations use the term “intersex genital mutilation” (IGM), which puts these procedures on par with the barbaric “female circumcision” (FGM).
“Before I was sixteen years old, my genitals were constantly examined, and often the doctor called for his colleagues so that they too could touch and examine my genitals. At that time I did not realize that this should not be so,” says one of the heroines Intersex Genital Mutilations. Of Human Rights Violations Of Sex With Anatomy. Подобный травматичный опыт общения с медиками имеют многие интерсексы: жутко звучат даже сами термины, которые используются по отношению к их половым органам - например, "слепой мешок" (о влагалище, не заканчивающемся маткой) и "пенетрабельность" (чтобы влагалище было "пенетрабельным", то есть чтобы в него поместился пенис, интерсекс-женщинам рекомендуют использовать вагинальные расширители).
"I am very sad that the health care system did everything so that I could never enjoy and explore the world, especially the sphere of intimate relationships, with that wonderful intersex body that I had at birth," says interid sexual activist Pidgeon, who in childhood I had surgery to remove the gonads, reduce the clitoris and reconstruct the vagina. - The doctors performed surgical procedures that permanently damaged my nerve endings, without medical indications and without my consent. All this was done to prevent Nia gender dysphoria, but led to the opposite result. "
I remember the episode. I am seventeen years old, came to the ultrasound. There are three doctors in the office. I tell them that I am complexing because the breast does not grow, I feel not enough girl. For some reason they decided that I was saying that I was a transgender person, I was terribly frightened and started asking: “Do you like boys? And who do you feel?” I talked about their complexes, and they started asking crazy questions.
In my intersex talks, I often ask people the question: "Have you ever had an operation without your consent?" Everyone usually shakes their heads, realizing how crazy this is. And for intersex people, this is a reality, especially for children born with atypical genitals: doctors do not think and do operations, and people get scarred for life, genital insensitivity or lifelong pain, often infertility, hormone replacement therapy for life, problems with urination. Also, the sex of the child is often chosen wrong. But no one thinks about the child. There is a lot of talk about "female circumcision" - crippling "operations" on the genitals of girls are recognized as a violation of human rights. With intersex children, the same thing happens, but they barely talk about it.
At nineteen, I learned that I have mixed gonadal dysgenesis, but, unlike most people with this diagnosis, who are most often “recognized” by girls, my gonads (testicle and gonadal cord) were descended into my scrotum, because at birth my gender was defined as male. I had a surgery - they removed the testicle. After my civil gender in the documents was changed to female, as a transgender.
Unfortunately, only after some time it became clear to me that prompted me to change the civil sex: social attitudes and the binary system of society. Understanding this fact, unfortunately, came to me too late.
Now I think about changing my official name to a non-binary, so that it reflects my psychological gender.
It is important to note that the removal of the gonad has resulted in health problems - primarily with the joints. The doctor said that with my diagnosis there is a high risk of cancer, but I believe that surgery without a real threat (and I was only hypothetical) is not required. I advise parents of girls with such a diagnosis not to hurry with mutilated operations.
If you didn’t hear anything about intersex people before the coming-out model of Hannah Gabi Odil or before reading this text, this is not surprising: although intersex is included in the extended abbreviation LGBTQIA (lesbian, gay, bisexual, transgender, queer, intersex, asexuals), even within the intersex community there is little information.
All the characters with whom we spoke during the preparation of this material noted that it was important for intersex people to keep in touch with each other. This is especially important for parents who may consent to an irreversible operation under pressure from doctors and harm their intersex child due to their own confusion and lack of information. In the Association of Russian-speaking intersex people (ARSI), founded by activist Alexander Berozkin, a valuable opportunity for parents to chat with an intersex child recently appeared. You can find materials about intersex in Russian on the website and on ARSI social networks, in the thematic VKontakte and other communities on social networks, as well as on the forum for intersex people. In Ukraine, there is the organization Egalite Intersex Ukraine, which, like ARSI, advises intersexes and their families on legal, medical and other issues. The heroines of this article, Irina and Daria, recently created their own organization, Intersex Russia (Intersex Russia), you can contact them by e-mail ([email protected]).
Often, intersexes have to tell doctors themselves how to treat them properly and what features should be taken into account. For obvious reasons, many intersexes do not trust physicians at all. One of the ways to find an understanding and friendly specialist is to contact the trans community and find out which doctors have performed well in working with transgender people.
As usual, English-speaking intersex is more fortunate: they can read articles in foreign media, subscribe to accounts of intersex organizations and bloggers, for example, Pidgeon, about which we recently wrote. There are few public intersex activists, and they all relate to each other with great warmth: as Emily Quinn says, "we are ready to enclose you in our wonderful, tender intersex hugs."
For now, publicly speaking about myself is hampered by the fact that I study at the university, where there are many homophobic-minded teachers, as well as conservative parents - both mine and my loved one, intersex with androgen insensitivity syndrome. Parents, like all people of the Soviet formation, accept only the binary system: for example, they clearly distinguish our social roles - me as "wives", my partner as "husband", despite the fact that my self-perception and self-presentation to society are not binary.
Intersex is not a disease and not a deformity. If suddenly people find out that I am intersex, infuriates when they treat me with pity, as if I were sick. Intersex is a common thing, and there’s nothing to worry about. It’s hard and scary what the medical community does to us.
For me, knowing that I was an intersex was the best event in my life. After so many years of self-hatred, I suddenly found out that I was not the only one in the world, I was not a “nedodevochka”, for the first time in my life I felt normal, attractive, and then I met many wonderful intersex people because of this.
Often doctors say that you are the only one that you will never meet anyone like you. This is not true: there are groups in social networks and events where you will meet other intersex people, if you wish, you can find people with the same variation as you have.
I myself for the time being do not want to tell everyone about myself, but not because I'm afraid of something, but because I’m sorry for my time: if you, as my friends say, you are "outgoing," you have to give everyone who meets you a whole lecture about such intersex, and it is quite tiresome. I am positive about my features. All people differ from each other - perhaps I am a little more, but this is not a reason to worry much.
In her speech at TED, activist Cecilia MacDonald emphasizes that intersex people are not things that need to be “repaired”. By 2017, society has more or less learned that gay and transgender people do not need to be repaired - similarly, attitudes towards indigenous people and people with disabilities changed (and there were redheads in opal in the Middle Ages). Now, activists are struggling to ensure that intersex variations are officially recognized as manifestations of the healthy diversity of the human body: in the new, 11th edition of the ICD, there will no longer be such unambiguously negative concepts like "hermaphroditism" and "congenital anomalies of the genital organs", and compromise the term "gender disruption" continues to be discussed.
What kind of vocabulary is better to use against intersex people, so as not to offend anyone, you can read here. The main rule is not to talk about intersex variations as pathologies and not to use the term "intersexuality" to avoid confusion (this translation of the word intersexuality into Russian causes associations with sexual orientation or sexual practices, to which intersex, where "sex" means only only "gender", not relevant). Naturally, with respect to intersex people, you need to use the pronoun that they use themselves: if you are not sure whether your interlocutor defines himself as “he” or “she”, simply ask politely. In an ideal world, when meeting people, people not only exchange names, but tell each other what pronouns they prefer - try to do it for the sake of experiment and immediately feel that the post-gender future is not far off.
Formal aspects and correct vocabulary are very important because only laws can guarantee the protection of intersex people from discrimination and ensure their right to physical integrity. However, for a happy life intersex people need not only rules, documents and declarations, but also a big shift in the collective consciousness: the wider people's ideas about the “norm”, the less children with non-binary gender characteristics will be “normalized” and suffer from of this.
Someday we will all learn to perceive the floor not as a system with two poles, but as a spectrum, within which various delightful variations are possible - in such a society, both intersexes, women, men and those who do not consider themselves to feel good none of these conditional categories.