Intersex is a word used to describe congenital variations of sex characteristics and people born with these variations.

All people are born with a broad range of bodily characteristics within the natural biological diversity of the human population. Historically, legal and social institutions singled out certain bodily features connected with the differentiation of human bodies and used them for classification. These features include the composition and number of specific genetic components; the structure, form, location, and functioning of sex organs; the production and levels of sex hormones in the blood; and other features. These features are called sex characteristics.

Human sex characteristics include sex chromosomes and genes responsible for the development of sex characteristics; sex hormone levels and the body’s sensitivity to them; sex organs (the penis, scrotum, testes, prostate gland, seminal vesicles, vas deferens and accessory sex glands, ovaries, fallopian tubes, uterus, vagina, clitoris, labia minora and labia majora, as well as variations in genitals and sex glands, for example ovotestis); the menstrual cycle; body build; breast size; Adam’s apple size; voice pitch; patterns of hair growth and fat distribution; skeletal structure; and others.

Most people are born and develop with one of two typical combinations of sex characteristics. For example, a person with XY chromosomes most often has a penis and testes that produce sperm cells, as well as higher androgen levels in the blood. A person with XX chromosomes most often has a vagina and uterus, ovaries that produce egg cells, higher estrogen levels in the blood, and menstruation.

However, millions of people are born with sex characteristics that differ from expectations about the sex characteristics of male or female bodies. These may include variations in sex chromosomes or different chromosomal patterns in different tissues of the same body; features of the form, size, location, and functioning of internal and external sex organs and their combinations; features of sex hormone levels in the blood and their effects on the body’s development; unexpected absence or development of secondary sex characteristics during puberty; and others.

Such combinations of sex characteristics that have a shared cause are called an “intersex variation” or a “variation of sex characteristics”. Many people born with intersex variations call themselves “intersex people”.

It is important to understand that intersex variations include congenital bodily features, rather than features acquired during life as a result of external circumstances such as medical intervention, an accident, or other events. Moreover, intersex variations include only bodily features that directly relate to sex characteristics. For example, changes in the composition of non-sex chromosomes or features of non-sex glands are not considered intersex variations in themselves.

Although lists of intersex variations may differ across medical and human rights sources, it is generally accepted that there are more than 40 distinct intersex variations. You can find examples of intersex variations in our guide “A Brief Glossary of Intersex Variations”.

Medical documents may contain names such as 5-alpha-reductase deficiency; 17-beta-hydroxysteroid dehydrogenase deficiency; complete or partial androgen insensitivity syndrome (testicular feminization); anorchia; aphallia; aromatase deficiency; aromatase excess syndrome (hyperestrogenism); clitoromegaly; congenital adrenal hyperplasia (CAH); cryptorchidism; de la Chapelle syndrome; epispadias; follicle-stimulating hormone insensitivity; estrogen insensitivity syndrome; Fraser syndrome; genital hypoplasia; gonadal dysgenesis; hyperandrogenism; hypogonadism; hypospadias; Jacobs syndrome (XYY); Kallmann syndrome; Klinefelter syndrome; Leydig cell hypoplasia; luteinizing hormone insensitivity; Mayer – Rokitansky – Küster – Hauser syndrome (MRKH); micropenis; sex chromosome mosaicism; changes in the Müllerian ducts; ovotestis; penoscrotal transposition; persistent Müllerian duct syndrome; progestin-induced virilization; Swyer syndrome (complete gonadal dysgenesis); trisomy X; Shereshevsky – Turner syndrome (Turner syndrome, XO syndrome); vaginal atresia; and XXYY syndrome.

Intersex people are born with certain sex characteristics that form in the fetus while still in the womb. Some sex characteristics of intersex people appear at later stages of life. A person can only be born intersex, and this fact does not change during life. However, an intersex variation may become apparent at different stages of life or may remain unknown or hidden from the person born with one of these variations.

An intersex variation may usually be identified before birth during fetal examination; at birth, based on the appearance of the child’s genitals; during examination of the reasons for a child’s atypical puberty; during examination of the causes of infertility; during a routine medical examination or an examination for sports competitions or military service; during genetic testing such as a paternity test, genealogical testing, and others; during an ordinary medical intervention, for example surgery; during a review of medical records about interventions performed in childhood; or after death.

It is important to remember that a reliable conclusion about whether an intersex variation is present requires all necessary examinations and identification of the specific cause of particular sex characteristics. Different types of medical examinations and diagnostic procedures may help establish an intersex variation precisely, including examination of sex characteristics; blood tests for sex hormones and hormonal tests; analysis of the structure and number of sex chromosomes (karyotyping); analysis of genes connected with sex development; ultrasound examination and magnetic resonance imaging (MRI) of internal organs; collection and analysis of tissue samples from the testes or ovaries (gonadal biopsy); prenatal examinations; and some other methods. Not all people need all of these examinations; their necessity should be determined by the person’s specific situation and request.

Being intersex is not a disease, so the expression “symptoms of an intersex variation” is incorrect. It is better to speak about signs, manifestations, or features of an intersex variation.

Features of the development of sex characteristics may indicate a possible intersex variation: the form, size, or location of genitals at birth, for example an enlarged clitoris or a smaller penis; complete or partial fusion of the labia or scrotum; the position of the penis in relation to the scrotum; the location of the urethral opening; absence or partial closure of the vaginal opening; the presence of a single canal and opening for the urinary and reproductive tracts; the structure or absence of the uterus and cervix; absence of gonads; absence of testes in the scrotum; simultaneous presence of testicular and ovarian tissue; a combination of internal and external sex organs that differs from what is expected; higher or lower sex hormone levels; early, late, or absent puberty; unexpected development or absence of development of breasts; absence of menstruation or changes in the menstrual cycle; height that differs from what is expected for age; reduced number of germ cells or their absence; difficulty conceiving; hair growth patterns in the armpits, on the face, and on other parts of the body; fat distribution in the body; a high or low voice; and other features.

These signs are presented for a general understanding of the topic. They do not mean that a person necessarily has an intersex variation and do not replace consultation with a specialist.

Contrary to popular belief, intersex variations are not rare. According to the most frequently cited data, up to 1.7% of humanity is born with one or another intersex variation. This means that, for example, up to 2,400,000 intersex people may live in Russia.

The exact percentage of intersex people is difficult to determine because intersex variations are defined, diagnosed, and counted differently in different countries and systems. Some variations are identified at birth, while others are identified during puberty, during examination of the causes of infertility, during genetic testing, or by chance during a medical examination. Some people may live for a long time without knowing about their intersex variation. Therefore, intersex variations may be more common than we assume.

Intersex variations are a manifestation of human biological diversity, like differences in height, body build, blood groups, or metabolism. This is a natural phenomenon, shaped by a complex interaction of genetic, chromosomal, hormonal, and environmental factors. There is no single reason why a person may be born with an intersex variation. For this reason, identifying the specific cause of an intersex variation in a particular fetus is difficult and often unnecessary. Nevertheless, it is known that some intersex variations can be inherited.

Intersex people have many different appearances. Intersex people do not have one shared appearance, one body type, or one set of visible features. Many intersex variations are not visible externally. They may be connected with chromosomes, hormones, internal sex organs, gonads, the menstrual cycle, pubertal development, or other bodily features that cannot be seen in a photo. Some intersex variations may appear in features of height, voice, hair growth, breast development, fat distribution, external genitals, or other sex characteristics. However, it is not possible to reliably determine from a person’s appearance, photograph, face, clothing, or body shape whether they are intersex.

Being intersex is not defined by one single set of sex characteristics.

Intersex people can have different chromosomal patterns. Some intersex people may have XX or XY chromosomes; others may have sex chromosome variations, for example XXY, X, XXX, XYY, as well as mosaic variants in which different chromosomal patterns are present in different cells of the body, for example 45,X/46,XY. Chromosomes are only one characteristic of sex and, by themselves, do not always make it possible to understand what hormones, gonads, internal reproductive organs, or external sex organs a person has.

Gonads, or sex glands, can also be different in intersex people. Gonads include ovaries, testes, ovotestis, meaning a gonad containing ovarian and testicular tissue, as well as gonads with atypical structure or development. In some intersex people, gonads may produce sex hormones or germ cells; in others, their function may be reduced or absent. Gonads may be located in the scrotum, inguinal canal, pelvis, abdominal cavity, or another place. The external appearance of the genitals does not always make it possible to understand what gonads a person has, how they are structured, or how they function.

Finally, the sex organs and genitals of intersex people can look different, even among people with the same variation. In many intersex people, genitals look typically male or typically female. Other intersex people may have variations in external or internal sex organs, for example features of the size or form of the clitoris or penis, the location of the urethral opening, or the structure of the vagina, scrotum, labia, gonads, or internal reproductive organs.

People often ask what “intersex chromosomes”, “intersex gonads”, “intersex genitals”, or “intersex sex organs” can be like or what they look like. However, it is important to remember that a person’s being intersex does not make their body, medical history, chromosomes, genitals, or experiences something others are entitled to ask about. Questions about sex characteristics, diagnoses, surgeries, reproductive capacity, or the appearance of genitals concern personal and medical information. It is appropriate to ask them only when the intersex person themselves wants to talk about this or when this information is genuinely necessary to provide help, support, or a medical service. Respectful communication begins with recognizing a person’s boundaries: interest in the topic of being intersex can be satisfied through open educational materials, rather than through questions about a specific person’s body.

Being intersex is not a new phenomenon; it has a biological nature and has existed for as long as humanity has existed. The first mentions of intersex people appear in ancient sources. There are known examples of legal proceedings in Ancient Rome and medieval Europe in which the legal sex of intersex people was determined for questions connected with marriage, voting rights, and inheritance.

However, throughout history, dominant views in society and medicine have contributed to low awareness, misunderstanding, concealment, and disregard of intersex variations. Medical practice was aimed at assigning people to binary sex categories through involuntary surgeries in childhood and subsequent concealment of the variation from the person themselves and even from their family. Unfortunately, this practice contributed to the invisibility of intersex people and made it harder for both intersex people and society to obtain information about being intersex.

The situation began to change in the first half of the 1990s, when openly intersex activists appeared and media began actively spreading information about intersex variations. This marked the beginning of changes in public attitudes toward intersex people, moving toward understanding and acceptance. You are reading this text precisely because of the courage and work of intersex activists.

Among other reasons, many intersex people do not know this fact about themselves because some intersex variations do not appear in everyday life and do not reveal themselves without specialized medical examinations. As a result, a person may live a significant part of their life without realizing the features of their sex characteristics or their causes.

Moreover, intersex people whose understanding of their body has been shaped by medical terminology may not know that they are part of a large and diverse community.

Finally, the invisibility of intersex people may be reinforced by stereotypes about the mythical nature of intersex variations, limited access to modern medical examinations, inability to access medical records and childhood photographs, as well as shame and trauma caused by heightened medical attention and examinations.

Although intersex terminology became widely used relatively recently, the root “intersex” has been used in Russian and international scientific literature for decades, beginning in the twentieth century. The most acceptable term for people with variations of sex characteristics is “intersex” or “intersex person”. To describe bodily features, the terms “intersex variation” or “variation of sex characteristics” can be used.

At present, in Russian, the term “intersex” is used in two meanings. First, the word “intersex” can be used as a noun meaning “a person born with sex characteristics or a combination of them that differs from the typical expected sex characteristics of a man or a woman”. It can function both as a subject or object (“Alla is intersex”, “the needs of intersex people”, “to be born intersex”) and as an appositive modifier (with adjectival meaning: “an intersex child”, “intersex patients”). In this meaning, the word “intersex” as a noun is declined according to the rules of Russian grammar. Second, the word “intersex” can be used as an indeclinable adjective meaning “relating to variations of sex characteristics” or “having a variation of sex characteristics”. For example: “intersex woman”, “intersex community”, “intersex creative work”.

Because the word “intersex” has entered the Russian language, do not put it in quotation marks unless you are referring to it as a semantic unit of language given as an example. As for hyphenation, when the word “intersex” is used as an indeclinable adjective or as an appositive modifier equivalent to an adjective, a hyphen after it may be omitted in writing. For example: “intersex community”, “intersex child”, “intersex organization”. However, if the word “intersex” comes after the word it modifies, a hyphen is written. Most often, when used as an appositive, the word “intersex” means a person with an intersex variation. Compare: “intersex woman”, “intersex man”, “intersex children”, but not “intersex creative work” or “intersex community” in a post-position form. See also our publication “How to Write About Intersex People?”.

When speaking about a specific person, it is necessary to take into account people’s own preferences regarding how they would like to be addressed. It is important to remember that intersex people may use different terms to describe themselves, and these terms may change depending on the context. Some people born with variations of sex characteristics call themselves intersex people and describe themselves with expressions such as “intersex”, “intersex person”, “intersex man”, and “intersex woman”. Other people, as well as their family members and medical practitioners, may describe themselves as people born with an intersex variation or as having an intersex variation, or may use medicalized terms and derivatives of them.

Study accurate information about intersex people and about the intersex variation of the person you are speaking with, as well as appropriate language for communicating about issues of sex, embodiment, disability, sexuality, and other related topics. Do not assume an intersex person’s pronoun, gender identity, or sexual orientation. Use the forms of address that the person has asked you to use for them. Respect the confidentiality of information connected with a person’s intersex variation if you have learned it. Do not disclose personal information without the person’s explicit permission.

Do not use expressions such as “disorder of sex development”, “disorder of sex formation”, “malformations”, or other medicalized terms, because they are incorrect. These expressions carry a negative connotation and have historically been used to pathologize intersex variations. The word “disorder” carries an assumption that there is some “normal” way for the body to develop and that any deviation from this standard is problematic, erroneous, or defective. This description may lead to feelings of inferiority and alienation among people with intersex variations. Moreover, in medicine, the word “disorder” often indicates a need for medical intervention or treatment. Using such expressions may contribute to harmful medical interventions on intersex children in order to eliminate the “disorder”.

Also, when speaking about intersex variations, it is important to understand that they are not a status or condition. Being born with one of the intersex variations is a fact that does not change over a person’s life. It is impossible to “become” intersex; an intersex variation can only be discovered.

Finally, it is incorrect to call intersex people “androgynes”, because this term describes not bodily characteristics, but how a person expresses ideas about their sex or gender, including through appearance, clothing, hairstyle, and other attributes. Moreover, although some intersex variations may be reflected in a person’s appearance, many variations are visually invisible.

The words “hermaphrodite” and “hermaphroditism” are incorrect in relation to intersex people. In the biological sense, a hermaphrodite is an organism that has a complete set of functioning male and female reproductive organs. In nature, hermaphroditism is a reproductive strategy in some animals, plants, and fungi. This situation does not occur among humans. Intersex people may have only individual characteristics typical of male and female sex at the same time, but not two complete sets of sex organs. Moreover, many intersex variations do not affect the appearance of the genitals in any way. For this reason, the term “hermaphrodite” is considered offensive when applied to people. Never use the word “hermaphrodite” in relation to intersex people, except in cases where a person with an intersex variation has personally asked you to use this term when addressing them.

The terms “intersexual” as a noun, “intersexuality”, and “intersexual” as an adjective are incorrect in relation to intersex people. The root “sexual” suggests a connection with sexuality. However, intersex variations concern bodily sex characteristics and are not connected with sexual orientation. Using these terms may create incorrect associations between intersex variations and issues of sexual orientation. If you want to speak about variations of sex characteristics, depending on the context, use expressions such as “variations of sex characteristics”, “having a variation of sex characteristics”, and “being intersex”.

A common myth is the idea that all intersex people cannot have children. In reality, this depends on the intersex variation. Many intersex people can conceive, carry, and give birth to children either naturally or with the help of assisted reproductive technologies. Some intersex variations do make it impossible to have children, but such people can become parents through adoption. The reproductive capacity of a specific intersex person should never be assumed and should always be assessed individually.

No. Lesbians, gay men, and bisexual people are categories used to describe a person’s sexual orientation. Sexual orientation means a person’s emotional, romantic, or sexual attraction to other people, whereas an intersex variation refers to a person’s bodily features. Because intersex variation and sexual orientation are not connected to each other, intersex people, like non-intersex people, can have any sexual orientation. Many intersex people are heterosexual, while some have another sexual orientation.

Being transgender is a phenomenon connected with gender and gender identity. In addition to biological sex, society has gender – a sociocultural understanding of sex that links attributes, norms, behavior, roles, relationships, expectations, and opportunities with biological sex. Over the course of life, in interaction with this sociocultural understanding of sex, all people, including intersex people, develop gender identity – an internal and personal sense of one’s own gender. Gender identity forms during development and is determined by the person themselves throughout life on the basis of personal experience. Given its subjective nature, it should be understood that it does not depend on a person’s bodily features or documents and may change over the course of life. Because intersex people may develop any gender identity as they grow up, it is impossible to predict it precisely. Biological sex and gender identity describe two different aspects of human existence.

Most intersex people are registered as male or female at birth and identify with the sex recorded at birth. Some intersex people, like non-intersex people, feel a mismatch between their gender identity and the sex recorded in their documents. Such people may use different terms and pronouns in relation to themselves and their sex or gender, depending on their own needs and context. For a deeper understanding of this issue, see our material “Intersex People and Transgender People”.

When speaking about biological sex, we can speak only about changes to individual sex characteristics. The expression “sex change” is incorrect. Some sex characteristics are unchangeable: a person cannot change the number and composition of sex chromosomes and genes or create certain organs. Other components of biological sex, for example hormone levels, genital form, or secondary sex characteristics, can be changed. Therefore, in the context of sex characteristics, we usually speak about changes to individual bodily characteristics, rather than replacement of the entire set of chromosomes, gonads, hormones, and internal and external organs.

Changes to individual sex characteristics in intersex people may occur under the influence of internal and external factors, primarily as a result of medical interventions.

As for internal factors, intersex people, like non-intersex people, go through changes in sex characteristics throughout life, especially during puberty. Some intersex people may develop sex characteristics that differ from what society expects based on the sex assigned to them at birth. For example, intersex people registered as female may grow a beard, experience enlargement of the clitoris, or not menstruate. Intersex people registered as male may not experience growth of muscle mass, facial hair growth, or lowering of the voice pitch typical of male puberty; they may develop enlarged breasts.

Most often, these changes are completely normal and do not require any medical interventions without the person’s wish and free, prior, personal, and fully informed consent. As for external factors, there are many ways to change or adjust individual sex characteristics, from major surgical and hormonal medical interventions to hair removal and bodybuilding.

Intersex people may consciously and voluntarily use these medical interventions for various reasons, for example to improve physical health, comfort, or reproductive possibilities. Another reason may be to reduce distress caused by a mismatch between their sex characteristics and their expectations or preferences. For example, intersex people may voluntarily seek medical and other interventions to change their sex characteristics so that they better reflect their inner sense of self and gender identity. An intersex young man with enlarged breasts may voluntarily decide to have a mastectomy. Similarly, an intersex girl may decide to begin estrogen hormone therapy.

Some intersex people were registered at birth in a sex that does not correspond to their sense of self and sex characteristics later in life. Such intersex people may need to change the legal sex marker in their documents so that their documents reflect the current reality of their life and identity.

However, intersex people are often subjected to mutilating medical procedures on their sex characteristics without free, prior, personal, and fully informed consent. Moreover, these procedures may lead to the need for new medical interventions. For example, surgeries to remove gonads in childhood may lead to the need for lifelong hormone replacement therapy.

Similarly, intersex people may need additional medical interventions related to their sex characteristics in order to correct the consequences of surgeries performed without their consent in childhood. Thus, for many intersex people, medical interventions related to their sex characteristics are not a matter of voluntary choice, but a forced consequence of violations of their rights.

Because being intersex is connected with issues of sex, many people often incorrectly classify all intersex people as part of the LGBT community. The abbreviation LGBT means the community of lesbians, gay men, bisexual people, and transgender people. All of these groups are connected with sexual orientation or gender identity. However, the characteristics of intersex people are connected with their bodily sex characteristics and have no relation to sexual orientation or gender identity. Many intersex people are heterosexual, and their gender identity coincides with the sex assigned to them at birth. Therefore, presenting all intersex people as part of the LGBT community is incorrect.

In addition, this conflation may influence parents’ decision to agree to surgeries that alter their intersex children’s sex characteristics because of related prejudices about sexual orientation and gender identity, without therapeutic necessity and without the personal, voluntary, informed consent of the child themselves. In Russia, automatically classifying intersex people as part of the LGBT community can be very dangerous because the “international LGBT movement” has been designated extremist.

The irresponsible use of the abbreviation LGBTI also causes problems. First, such use may distort facts by adding intersex people to descriptions of events that concern only people of diverse sexual orientations and gender identities. Second, the abbreviation LGBTI may divert attention away from high-quality and accurate presentation of intersex issues as issues concerning an independent group of people, and may increase the invisibility of the unique problems and needs of intersex people, which often do not coincide with the needs and problems of the LGBT community. Third, the abbreviation LGBTI may hide references to intersex people merely to create an impression that organizations’ activities and statements are inclusive, when that impression is not supported by real assistance to intersex people.

To summarize, remember that being intersex in itself does not mean belonging to the LGBT community. Many intersex people are heterosexual and cisgender and do not consider themselves part of the LGBT community. In Russian-language materials concerning Russia, it is important to speak about intersex people separately and directly when the subject is sex characteristics, medical interventions, bodily autonomy, and the rights and needs of intersex people. The abbreviation LGBTI should be used only when the subject genuinely concerns intersex people or specific intersections of being intersex with issues of sexual orientation and gender identity.

Medical, legal, and social institutions often classify people on the basis of sex characteristics into categories within a system called “sex” or “biological sex”. Sometimes media use expressions such as “third sex”, “intersex sex”, or descriptions referring to components of biological sex: “intersex genetics”, “intersex anatomy”, “intersex organs”, and others.

Such expressions are incorrect because, when we speak about intersex variations, we are speaking about sex characteristics, not about a separate sex or its components. A separate “sex” implies a shared biological pattern of development. However, intersex variations do not form one single body type, and intersex people do not have one common set of sex characteristics.

In addition, many intersex people identify as men or women with bodily features, or use expressions such as “intersex man”, “intersex woman”, “intersex girl”, or “intersex boy”. Presenting being intersex as a separate or new sex may imply that intersex women are not women and intersex men are not men, and may undermine how many intersex people understand themselves, their bodies, and their lives.

Therefore, the word “intersex” is better used to describe people with intersex variations, intersex variations themselves, and issues connected with variations of sex characteristics.

Intersex variations are a manifestation of biological diversity. The mere presence of such a variation does not mean the presence of danger or a problem, and an intersex variation should not be treated as something that needs to be cured. Intersex people can live healthy, full lives, and with proper support, most intersex people do not experience serious health risks or problems.

Although in some rare cases intersex people may use medical interventions to correct hormone levels or prevent cancer, most intersex people do not need medical interventions without their consent. On the contrary, the most serious health consequences for intersex people result from interventions performed in the absence of medical necessity, including “normalizing” sex surgeries, which are discussed below.

Nevertheless, the International Classification of Diseases, 11th Revision, still contains individual intersex variations described in pathologizing terms. This aggravates the stigmatization, marginalization, and discrimination of intersex people and contributes to violations of their rights. Treating intersex variations as danger, disease, or tragedy causes psychological harm and may lead to irreparable mistakes. For example, this attitude toward intersex variations may cause parents of intersex children to want to hide the intersex variation from the child, leading later to shock, shame, a sense of isolation, and lack of understanding for the child. Instead, intersex people need sensitive, open, and respectful communication and treatment, as well as support based on their specific needs and informed consent.

Most intersex variations do not pose a threat to life or health. However, many intersex people, especially in childhood, are subjected to medical interventions affecting their sex characteristics without therapeutic necessity and without personal, prior, voluntary, and fully informed consent.

Such medical interventions include surgeries that alter the appearance, form, and size of external and internal sex organs, the use of hormonal medications, and other related practices carried out in the absence of an immediate risk to the patient’s physical health if such intervention is refused. Examples of such surgeries include changing the size or position of the clitoris (clitoroplasty), the vagina (vaginoplasty), the functioning urethra (“correction” of hypospadias), removal of gonads (gonadectomy), and other mutilating surgeries performed without medical necessity and without the patient’s consent.

The key criterion for any medical intervention is the presence of a real, immediate, and unavoidable risk of serious harm to physical health. Urgent interventions aimed at eliminating such a risk differ from interventions carried out for cosmetic, social, or cultural reasons, for example in order to bring a child’s body into conformity with expectations about a typically male or female body.

For a long time, the medical model for treating intersex people was based on the erroneous theory of psychologist John Money that an arbitrarily chosen gender identity could be imposed on intersex children through medical interventions and concealment of the truth. Since the late 1990s, adult intersex people who became victims of such interventions in childhood have spoken about the lifelong physical and psychological harm caused by this practice of “normalizing” sex through medical interventions, while human rights defenders and scholars have shown that many problems connected with intersex variations are social, not medical. Nevertheless, the practice of such harmful medical interventions continues.

Healthcare professionals, with the consent or at the request of parents, often carry out these interventions for social and cultural reasons in the absence of medical necessity. Pretexts used to justify such interventions include bringing the patient’s sex characteristics into conformity with social expectations about typical sex characteristics of men or women; stereotypes about the child’s future gender and sexuality; easing parents’ anxiety about raising a child with particular bodily features; reducing the child’s risk of discrimination by their environment; and financial, cosmetic, religious, and other non-medical considerations. None of these reasons constitutes therapeutic necessity.

These interventions cause serious, lifelong, and irreparable harm to intersex people. A common justification for medical interventions is claims about benefits for the patient’s health, despite the absence of clinical consensus or convincing medical data about the necessity, positive long-term outcomes, and timing of such interventions. On the contrary, there are numerous studies and testimonies by intersex people about the lifelong negative consequences of such interventions for physical and mental health.

Among physical consequences, intersex people report infertility, chronic pain, scars and scar tissue, urinary incontinence and recurring urinary tract infections, osteoporosis, hormonal imbalance, and loss of sexual sensitivity. Mental health consequences include post-traumatic stress disorder, depression, problems in sexual life, feelings of violation associated with the use of vaginal dilators in childhood, and suicidal behavior. Other consequences include the need for lifelong hormone therapy, additional surgeries, and medical examinations.

Finally, any medical intervention in the absence of an immediate risk to physical health should be performed only with the free, prior, personal, and fully informed consent of the patient themselves. Intersex children at an early age cannot give such consent because they are not able to understand the nature of the medical intervention and its lifelong consequences. For such non-urgent and irreversible interventions, parents cannot give consent instead of the child because they cannot assess in advance the child’s long-term interests, future needs, attitude toward their own body, sexual sensitivity, reproductive possibilities, gender identity, and personal understanding of their wellbeing. Such a decision must be postponed until an age at which the intersex patient can participate in decision-making and give free, prior, personal, and fully informed consent.

Modern international intergovernmental and nongovernmental organizations clearly regard such interventions as violations of human rights, including children’s rights and the prohibition of torture and other cruel, inhuman, or degrading treatment. UN bodies and the intersex community call for a legal ban on these interventions. Such bans have already been adopted in a number of states.

The first exception is obtaining the voluntary, personal, prior, and fully informed consent of an intersex patient who has the actual capacity to give such consent. In making any decisions, it is important to take into account the child’s right to information, participation in decision-making, and respect for their evolving capacities. The older the child is, the greater significance should be given to their own opinion, understanding of their body, and consent to medical interventions.

The second exception is a limited number of cases of genuine therapeutic necessity, where an urgent medical intervention is necessary to eliminate an existing and unavoidable risk of serious harm to the patient’s physical health. Such situations may include urgent medical care in cases of risk of life-threatening salt-wasting, elimination of urinary tract obstruction, or treatment of existing malignant tumors.

Intersex people may face a broad range of social, legal, and medical problems. Among the main ones are: medicalization and pathologization of intersex variations; medical interventions that alter the sex characteristics of intersex people performed without medical necessity and without personal, prior, voluntary, and fully informed consent; discrimination, stigmatization, marginalization, and bullying on the basis of sex characteristics in education, employment, healthcare, sport, and access to services; lack of access to high-quality, competent, and ethical healthcare based on the specific needs of intersex people and on personal, voluntary, informed, and prior consent; lack of access to one’s own medical data and information about medical interventions performed; low awareness among healthcare professionals about intersex people and their needs; violations in the sphere of respect for private life, personal confidentiality, and medical confidentiality; violence and other crimes committed because of sex characteristics; sensationalism, objectification, and incorrect representation in media; lack of access to changing one’s legal sex marker through a quick, simple administrative procedure based on self-determination; social invisibility and lack of understanding and awareness of intersex people in society; psychosocial stress and anxiety caused by stereotypical expectations and pressure from society, culture, and religion regarding people’s bodies and identities depending on sex.

Intersex people and international organizations regularly note violations of intersex people’s rights to physical integrity, bodily autonomy, informed and voluntary consent in medical interventions, the highest attainable standard of health, respect for private and family life, freedom from discrimination, access to information, and other human rights.

The goals of the intersex community are connected with resolving the main problems faced by intersex people. The key goal is to end the practice of medical interventions that alter the sex characteristics of intersex people when such interventions are performed without medical necessity and without personal, prior, voluntary, and fully informed consent.

Other goals include: depathologization of intersex variations; access to high-quality, competent, and ethical healthcare based on the specific needs of intersex people and on personal, voluntary, informed, and prior consent; access to one’s own medical data and information about medical interventions performed; prevention of and protection from violence, discrimination, crimes, and rights violations because of sex characteristics in all spheres of life; respect for the right to private and family life, personal confidentiality, and medical confidentiality; access to changing one’s legal sex marker through a quick, simple administrative procedure based on self-determination; development of support systems and services for intersex people and their families; increased visibility, awareness, and understanding among the public and helping professionals of the problems and needs of intersex people; and sufficient, accurate, and inclusive representation in media space.

Read our guide “My Intersex Child”.

If an intersex variation has been identified in your child, treat the first conversations with doctors as a stage of gathering information, not as a moment for urgent decisions. It is important to understand which specific variation is suspected or established, what questions should be asked of specialists, which decisions can wait, and what rights the child and family have. Below are the main steps that will help parents act calmly, respect the child’s bodily autonomy, and receive help without rushed or irreversible decisions.

Practice acceptance. Many parents first learn about intersex variations only after the birth of a child or during a medical examination, so it may be difficult for them to immediately understand what decisions need to be made and what questions should be asked of doctors. Parents face a situation that is little discussed in society, unlike the birth of non-intersex children. Accept that you are not “to blame” for the fact that your child has an intersex variation and that you cannot change this. A variation of sex characteristics is a manifestation of natural bodily diversity. You are not alone, and many other parents around the world, from antiquity to the present day, have successfully raised and cared for their intersex children. It is important to accept your child as they are and to remember that intersex people can live full and rich lives. Your role is to respect the child’s body, their right to information, and their participation in decisions.

Gain knowledge and skills. Over the past two decades, awareness of intersex variations has improved significantly and continues to grow. There are many resources for self-education, support, and connection with community for parents and families of intersex children. These resources can help you navigate the emotional, social, and medical aspects of raising an intersex child. Study varied information about your child’s variation, our guide for parents of intersex children, and our website for parents of intersex children, “M-F”. Try to find people with your child’s intersex variation or their parents and talk to them.

Do no harm. Remember that a variation of sex characteristics is in itself a feature of the body. The mere presence of an intersex variation most often does not cause pain. Despite the need for monitoring, intersex children usually do not need any immediate medical or surgical intervention.

Do not agree to any irreversible medical interventions on your child’s body if nothing is threatening their life or health right now. The consequences of such interventions are often irreversible. If there is no existing and unavoidable risk of harm to the child’s physical health, wait until the child grows older and can participate in medical decision-making.

Tell the child about their variation. It is important to speak openly about this with the child and the family, even if doctors or society pressure you and demand that you keep it secret. Hiding the truth may make it harder for the child to accept themselves and may lead to problems with self-esteem in the future. By being honest, you help the child understand and accept who they are. This openness will prepare them to cope with life challenges they may face and will teach them to set clear boundaries in relationships with other people. If you speak with the child about being intersex in an accessible way, this will help them grow up confident and ready to stand up for themselves. At the same time, remember your child’s right to privacy when discussing their variation with other people. As the child grows older, they should increasingly decide for themselves with whom and to what extent they want to share information about their body.

Find a good treating physician. Look for a doctor who understands intersex issues, works on the basis of evidence-based medicine, and follows medical ethics. A good doctor should understand intersex variations, offer alternatives, avoid pressure, and respect refusal.

Prepare yourself and the child for medical examinations. Clearly explain to the child what to expect during the procedure. If the child wants this, be present during the examination to provide comfort and support. Limit the number of people in the examination room to ensure confidentiality. You have the right to do this.

Read our guide for healthcare professionals on working with intersex patients.

The main principle is: do no harm. If the patient has no real, immediate, and unavoidable threat to life or physical health, do not perform irreversible surgical or hormonal interventions affecting sex characteristics without the personal, free, prior, and fully informed consent of the patient themselves, even if the patient is a child.

Verify information. Do not make unverified judgments about complications or the risk of cancer due to the patient’s intersex variation. If you do not have sufficient knowledge about your patient’s intersex variation, openly inform the patient or their family and study the information before planned interventions connected with sex characteristics. If necessary, consult more experienced colleagues or specialized intersex organizations.

Tell the truth. Do not hide information about an intersex variation from the patient, even if your patient is a child. Lies about the patient’s sex characteristics ultimately cause greater harm and psychological trauma.

Use appropriate language. Pay attention to the words and expressions you use. Avoid expressions that create a sense of doom and pathological abnormality in relation to the patient’s variation: “hermaphrodite”, “anomaly”, “pathology”, “incurable”, and others. Use neutral and respectful language, explain medical information without intimidation, and separate real health risks from social expectations about what the patient’s body should be like.

Do not assume. Be careful when discussing the patient’s reproductive capacity. Make sure, based on scientific data, that your patient’s variation means infertility. If it does, mention the possibility of using assisted reproductive technologies or adoption.

Do not assume an intersex person’s attitude toward reproduction and do not present information about infertility as a tragedy. Also, do not assume the patient’s gender identity or sexual orientation. If the patient is already able to communicate their preferences, ask what pronouns the patient uses and respect this choice. When speaking about a newborn intersex child, use “child” and “patient”, without imposing a gender identity.

Respect the patient’s private life. Limit your curiosity: ask questions only to the extent required to provide medical assistance requested by the patient. Always ask intersex people and their parents who may be present during an examination. Do not bring your colleagues to an examination without the permission of the patient themselves, even if the patient is a child, or, in the case of newborn children, without the permission of their parents.

Share support resources. Be sure to tell patients and their parents about the intersex community and support groups such as the Association of Russian-Speaking Intersex People (ARSI), and send them links to our resources.

Learn about intersex people. Study accurate information about intersex people, intersex variations, issues of sex, and sex characteristics.

Read books and articles, watch films about intersex people, and learn about the creative work of intersex people. Study and use appropriate language on intersex issues, and encourage and teach other people to use it.

Support intersex organizations and intersex people. Find local intersex organizations, follow their social media accounts, and share their materials. Offer intersex organizations your time and skills. We constantly need the help of volunteers: translators, editors and proofreaders of Russian-language texts, designers, doctors, lawyers, psychologists, journalists, researchers, and IT specialists.

If you have the opportunity, support intersex organizations financially. Such support greatly helps our work.

If you personally know people with intersex variations, offer them your time, attention, and support.

Raise public awareness. Talk with friends and relatives to increase awareness of intersex people in society. Use only accurate and verified information.

Use your social media pages to draw attention to the needs and problems of intersex people. If you want to create content about intersex people, study our guide “How to Write About Intersex People?”. At the same time, remember that being intersex is a personal matter for each person, and not everyone wants to discuss their experiences.

Show solidarity. Involve intersex people in any activities and programs aimed at protecting their rights. Correct inaccurate statements about intersex people. Speak out against disinformation and discrimination against intersex people.

Observe October 26, Intersex Awareness Day, and November 8, Intersex Solidarity Day.