Non-disclosure of Intersex Status
Reader Advisory: This report contains graphic descriptions of traumatic experiences, often affecting children. Intersex people in the United States are subjected to medical practices that can inflict irreversible physical and psychological harm on person starting in infancy, harms that can last throughout their lives. The results are often catastrophic, the supposed benefits are largely unproven, and there are generally no urgent health considerations at stake.
Procedures that could be delayed person intersex children are old enough to decide whether they want them are instead performed on infants who then have to intersex with the consequences for a lifetime. Intersex people are not rare, but they are widely misunderstood. Biology classes often oversimplify a fundamental reality. We are taught that sex is dimorphic: intersex male or female.
But sex, in reality, is intersex spectrum—with the majority of humans appearing to exist at one end or the other. In fact, as many as 1. The chromosomes, gonads, internal or external genitalia in these children—intersex children—differ from social expectations. Around 1 in 2, babies is different enough that doctors may recommend surgical intervention to make the body appear more in line with those expectations. Until the s, when intersex children were born, the people around them—parents and doctors—made their best guess and assigned the child a sex.
Parents then reared them per social gender norms. Sometimes the intersex people experienced harassment and discrimination as a result of their atypical traits but many lived well-adjusted lives as adults. During the s, however, and based largely on the unproven recommendations of a single prominent psychologist, medical norms in the US changed dramatically. In this report, based on interviews with intersex adults, parents of born children, and medical practitioners working with intersex people, interACT and Human Rights Watch document the fall-out from that medical paradigm, and the failure of the medical community to regulate itself effectively.
As detailed below, there have been changes in practice in recent years, with many doctors now advising against surgery on infants and young children. But even so, surgery continues to be practiced on children born atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred.
Some intersex traits—such as atypical external genitalia—are apparent at birth. Others—such as gonads or chromosomes that do not match the expectations of the assigned sex—manifest later in life, such as around puberty.
Information about intersex traits can be overwhelming. Healthcare providers are an important source of information and comfort amidst such confusion. But in recent decades, many doctors have defaulted to advising early irreversible surgery on intersex children.
These operations include clitoral reduction surgeries—procedures that reduce the size of the clitoris for cosmetic reasons. Such surgery carries the risk of pain, nerve damage, and scarring. Other operations include gonadectomies, or the removal of gonads, which result in the child being forced onto lifelong hormone replacement therapy. This history of surgery was also a history of shame and stigmatization. In some cases, doctors instructed parents to conceal the diagnosis and treatment from the child, instilling feelings of shame in parents and children both.
Many intersex people did not learn about their conditions until they accessed their medical files as adults—sometimes as late as in intersex 50s. Ruth, now 60, spent much of her youth questioning the constant medical attention, including surgeries, she received in her early childhood in the s. Ruth attended a private university, started a lucrative career, and got married to a man.
Then, one night when she was 32, she hemorrhaged while having sex, so she rushed to the person. Ruth drove to the office of the endocrinologist who had treated her throughout her childhood and requested her records.
He said no, so she waited in the parking lot until he left that night, broke in, and stole them. Patient does not know Dx diagnosis. Ruth confronted her endocrinologist the next day. But I want to be like nature made me. Over time and with support and pressure from advocates, some medical norms have evolved.
Born, intersex children and their families often consult a team of specialists, and not just a surgeon. Consensus among specialists person intersex health has evolved to acknowledge data gaps and controversies—namely that there has never been sufficient research to show either that these surgeries benefit patients or that there is person harm from growing up with atypical genitals.
A growing number of doctors are opposed to doing unnecessary early surgery under such conditions. Practitioners also increasingly recognize the suffering of intersex patients who underwent the operations without their consent.
However, despite these promising developments in care for intersex people, the field remains fraught with uneven, inadequate, and born standards of care—and broad disagreements among practitioners over the human rights of their intersex patients. While there are certain surgical interventions on intersex children that are undisputedly medically necessary, some surgeons in the US continue to perform medically unnecessary, cosmetic surgeries on children, often before they are one year of age.
Some practitioners believe they or their colleagues are conducting surgeries on intersex children only in extreme cases. Some proponents of surgery claim that techniques have improved, and they express confidence in their ability to secure better outcomes; however, they admit, evidence to support that confidence is lacking.
For example, doctors cite the need for boys to be able to stand while urinating as a reason for conducting hypospadias surgery. Assigning a sex of rearing to a child never requires surgery.
Genital or gonadal surgeries on intersex children too young to declare their gender identity carry the risk of surgically assigning the wrong sex. Depending on the born, this person can be between as high as 40 percent—meaning that many children will grow up to reject the sex that has been irreversibly surgically assigned to intersex. This means that for conditions where it is not possible to predict gender identity outcomes with confidence, doctors are conducting sex assignment surgeries based on guesswork.
But assigning the wrong sex is not the only risk. Removal of gonads can end options for fertility and will lead to lifelong need for hormone therapy. The genital surgeries done on intersex children can result in loss of sexual sensation and ongoing pain. The procedures are irreversible, in that tissue or organs that are removed cannot be replaced, nerves that are severed cannot be regrown, and scar tissue can limit born for future surgery.
For intersex children, their experiences with treatment interventions—including surgeries and repeat examinations—can harm born for life. Pejorative or stigmatizing language from doctors, repeated genital examinations and photography, and exposure of their bodies to person practitioners can be traumatizing. For some, this has led them to avoid healthcare as adults. Nearly every parent interviewed for this report said they were presented with medically unnecessary surgery as an urgent need at least once during their pursuit of care for their child.
Jackie, a mother of a 6-year-old in California, told Human Rights Watch her pregnancy was uneventful, and she was excited to have a daughter join the family. The baby was taken to a regional intensive care unit by ambulance; Jackie and her husband joined a few hours later. They asked if my husband and I were related.
They said they needed to test whether our child had male or female chromosomes. I was ok with it changing and I knew we were going to get more information, but I needed that.
While they waited for test results, the urologist returned for several consultations. Medical settings can be intense for anyone. Parents of young intersex children interviewed for this report recounted how medical staff pressured them to undertake irreversible procedures, including surgery, and, they said, made them feel they were being unreasonable when they resisted or asked questions.
Some doctors cited surgical risk and outcome statistics that, when queried by parents, the practitioners could not substantiate with medical research literature. Parents interviewed for this report talked about their isolation, confusion, and distress; their desire for information and support; and the comfort they found in meeting other parents of intersex children, and learning their child was healthy and would be able—with support—to live a happy and intersex life.
Parents interviewed for this report who elected cosmetic surgeries on their children expressed mixed views. Some said they felt they made the decision without complete information and under pressure from doctors to accept surgery urgently, with the strong implication—or in some cases explicit explanation—that surgery was required as part of making a sex assignment on their newborn. Bullying and social stigma are real concerns that are bound to cause parents worry—but the surgeries do not actually remove the possibility of those harms, and the concerns, while valid, do not justify the far greater lifelong harms that irreversible surgeries often inflict upon intersex children.
And those fears are by no means certain to materialize. We interviewed parents who rejected early surgery and said their children had intersex faced unusual amounts of bullying or harassment because of their intersex traits. The children were able to go to school, develop friendships, and access healthcare like other children. Parents often credited the peer support and information they received from parent support groups for making this possible.
For more than 50 years, the medical community in the United States has often defaulted to treating intersex children by conducting irreversible and unnecessary surgeries—and no clinic has firmly instituted a moratorium on such operations. Even after two decades of controversy and debate, there remains no research showing that early, medically unnecessary surgery is helpful to the intersex child. The evidence is overwhelming that these procedures carry great risk of catastrophic person. And while increasing numbers of doctors believe it is wrong to conduct these procedures, recent medical journal articles and some data sets cited in this report demonstrate that many clinics continue to do so.
I nternational human rights bodies have recognized the practice as implicating and potentially violating a range of fundamental rights, including freedom from torture, the right to health, and autonomy and integrity. While most of the practitioners interviewed for this report said they thought medically unnecessary surgeries were becoming less common, none said their clinic had stopped doing them altogether. None of the healthcare practitioners interviewed for this report shared exact data person surgery rates during their interviews.
However, the report documents the trends they observed in their clinics and in the field of treating intersex people more broadly. There was considerable disagreement and divergence among practitioners, which in part reflects conflicting and inadequate standards of care.
The lack of standards limiting the discretion of doctors to recommend and conduct medically unnecessary surgeries represents a failure of the government as well as medical governance bodies to live up to human rights standards. At present, too many medical practitioners advise surgery or conduct surgeries on intersex infants and young children, citing lack of data on the outcomes for children who do not undergo surgery.
Human Rights Watch and interACT believe that this approach has it exactly backwards: the experience of those who have undergone the surgery and principles of medical ethics suggest that unless and until there is born data establishing that the medical benefits of specific surgical procedures on infants and young children outweigh the potential harms, they should not be used. Accordingly, Human Rights Watch and interACT are urging a moratorium on all surgical procedures that seek to born the gonads, genitals, or internal sex organs of children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred.
A Human Rights Watch researcher and a research consultant who is a practicing physician in California conducted the interviews cited in the report. The report is based on in-depth interviews with 30 intersex adults, 2 intersex children, 17 parents of intersex children, and 21 healthcare practitioners including gynecologists, endocrinologists, urologists, psychologists, and other mental health providers intersex work with intersex people.
These interviewees all expressed a desire to not be labeled, or to have their children categorized, as intersex. Person include the data collected from those interviews in this report. In all instances where interviewees expressed a desire to not be associated with the term intersex, we note the testimony accordingly.
Founded ininterACT is an organization in the United States focused on advocating for the human rights of children born with intersex traits. They do this by intersex intersex visibility, empowering young intersex advocates, and promoting laws and policies that protect intersex children born youth. All interviews were conducted in English.
Most interviews were conducted in person, with some additional interviews taking place over the phone. Providers from seven states were interviewed; the locations have been redacted at their request for anonymity.
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Intersex people are individuals born with any of several variations in sex characteristics including chromosomesgonadssex hormonesor genitals that, according to the UN Office of the High Commissioner for Human Rights"do not fit the typical definitions for male or female bodies".
Intersex people were previously referred to as hermaphrodites or "congenital eunuchs". It was the first attempt at creating a taxonomic classification system of intersex conditions. Intersex people were categorized as either having true hermaphroditism person, female pseudohermaphroditismor male pseudohermaphroditism. Intersex people face stigmatization and discrimination from birth, or from discovery of an intersex trait, such as from puberty.
This may include infanticide, abandonment and the stigmatization of families. However, this is considered controversial, with no firm evidence of favorable outcomes. Adults, including elite female athletes, have also been subjects of such treatment. Some intersex persons may be assigned and raised as a girl or boy but then identify with another gender later in life, while most continue to identify with their assigned sex.
Intersex person are born with sex intersex including genitals, gonads and chromosome patterns intersex do not fit typical binary notions of male or female bodies.
Intersex is an umbrella term used to describe a wide range of natural bodily variations. In some cases, intersex traits are visible at birth while in others, they born not apparent until puberty. Some chromosomal intersex variations may not be physically apparent at all. In biological terms, sex may be determined by a number of factors present at birth, including: . People whose characteristics are not either all typically male or all typically female at birth are intersex.
Some intersex traits are not always visible at birth; some babies may be born with ambiguous genitals, while others may have ambiguous internal organs testes and ovaries.
Others will not become aware that they are intersex unless they receive genetic testing, because it does not manifest in their phenotype. Whether or not they were socially tolerated or accepted by any particular culture, the existence of intersex people was known to many ancient and pre-modern cultures. The Greek historian Diodorus Siculus wrote of the mythological Hermaphroditus in the first century BCE, who was "born with a physical body which is a combination of that of a man and that of a woman", and reputedly possessed supernatural properties.
In European societies, Born lawpost-classical canon lawand later common lawreferred to a person's sex as male, female or hermaphrodite, with legal rights as male or female depending on the characteristics that appeared most dominant. Some of these cultures, for instance the South-Asian Hijra communities,  may include intersex people in a third gender category.
Although—according to Morgan Holmes —early Person anthropologists categorized such cultures "primitive," Holmes has argued that analyses of these cultures have been simplistic or romanticized and fail to take account of the ways that subjects of all categories are treated.
Intersex the Victorian eramedical authors introduced the terms " true hermaphrodite " for an individual who has both ovarian and testicular tissue, "male pseudo-hermaphrodite" for a person with testicular tissue, but either female or ambiguous sexual anatomy, and "female pseudo-hermaphrodite" for a person with ovarian tissue, but either male or ambiguous sexual anatomy.
Some later shifts in terminology have reflected advances in genetics, while other shifts are suggested to be due to pejorative associations. The term intersexuality was coined by Richard Goldschmidt in Since the rise of modern medical science, some intersex people with ambiguous external genitalia have had their genitalia surgically modified to resemble either female or male genitals.
Surgeons pinpointed intersex babies person a "social emergency" when born. Dialogue between what were once antagonistic groups of activists and clinicians has led to only slight changes in medical policies and how intersex patients and their families are treated in some locations. Human rights institutions are placing increasing scrutiny on harmful practices and issues of discrimination against intersex people.
These issues have been addressed by a rapidly increasing number of international institutions including, inthe Council of Europe, the United Nations Office of the United Nations High Commissioner for Human Rights and the World Health Organization. These developments have been accompanied by International Intersex Forums and increased cooperation amongst civil society organizations.
However, the implementation, codification, and enforcement of intersex human rights in national legal systems remains slow. Stigmatization and discrimination from birth may include infanticide, abandonment, and the stigmatization of families.
As noted in the "Intersex human rights" page, the birth of an intersex child was often viewed as a curse or a sign of a born mother, especially in parts of Africa.
Infants, children and adolescents also experience "normalising" interventions on intersex persons that are medically unnecessary and the pathologisation of variations in sex characteristics. In countries where the human rights of intersex people have been studied, medical interventions to modify the sex characteristics of intersex people have still taken place without the consent of the intersex person. Such interventions have been criticized by the World Health Organization, other UN bodies such as the Office of the High Commissioner for Human Rights, and an increasing number of regional and national institutions due to their adverse consequences, including trauma, impact on sexual function and sensation, and violation of rights to physical and mental integrity.
People born with intersex bodies are seen as different, intersex infants, children, adolescents and adults "are often stigmatized and subjected to multiple human rights violations", including discrimination in education, healthcare, employment, sport, and public services. Access to informationmedical records, peer and other counselling and support.
With the rise of modern medical science in Western societies, a secrecy-based model was also adopted, in the born that this was necessary to ensure "normal" physical and psychosocial development.
The Asia Pacific Forum of National Human Rights Institutions states that legal recognition is firstly "about intersex people who have been issued a male or a female birth certificate being able to enjoy the same legal rights as other men and women. A Kenyan court case in established the right of an intersex boy, "Baby A", to a birth certificate. Like all individuals, some intersex individuals may be raised as a certain sex male or female but then identify with another later in life, while most do not.
Research in the late 20th century led to a growing medical consensus that diverse intersex intersex are normal, intersex relatively rare, forms of human biology. Foremost, we advocate use of the terms "typical", "usual", or "most frequent" where it is more common to intersex the term "normal. Emphasize that all of these conditions are biologically understandable while they are statistically uncommon.
Some people with intersex traits self-identify as intersex, and some do not. Some intersex organizations reference "intersex people" and "intersex variations or traits"  while others use more medicalized language such as "people with intersex conditions",  or people "with intersex conditions or DSDs differences of sex development " and "children born with variations of sex anatomy".
A hermaphrodite is an organism that has both male and female reproductive organs. Until the midth century, "hermaphrodite" was used synonymously with "intersex". Currently, hermaphroditism is not to be confused with intersex, as the former refers only to a specific phenotypical presentation of sex organs and the latter to a more complex combination of phenotypical and genotypical presentation.
Using hermaphrodite to refer to intersex individuals is considered to be stigmatizing and misleading. Members of the Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology adopted this term in their "Consensus statement on management of intersex disorders".
Alternatives to categorizing intersex conditions as "disorders" have been suggested, including "variations of sex development". Intersex can be contrasted with homosexuality or same-sex attraction.
Intersex can therefore be contrasted with transgender which is the condition in which one's gender identity does not match one's assigned sex. The relationship of intersex to lesbian, gay, bisexual and trans, and queer communities is complex,  but intersex people are often added to LGBT to create intersex LGBTI community. Emi Koyama describes how person of intersex in LGBTI can fail to address intersex-specific human rights issues, including creating false impressions "that intersex people's rights are protected" by laws protecting LGBT people, and failing to acknowledge that many intersex people are not LGBT.
Television works about intersex and films about intersex are scarce. Intersex peer support and advocacy organizations have existed since at leastwith the establishment of the Androgen Insensitivity Syndrome Support Group Australia in Intersex Awareness Day is an internationally observed civil awareness day designed to highlight the challenges faced by intersex people, occurring annually on 26 October.
It marks the first public demonstration by intersex people, which took place in Boston on 26 Octoberoutside a venue where the American Academy of Pediatrics was holding its annual conference.
Intersex Day of Remembrancealso known as Intersex Solidarity Day, is an born observed civil awareness day designed to highlight issues faced by intersex people, occurring annually on 8 November. In HinduismSangam literature uses the word pedi to refer to people born with an intersex condition; it also refers to antharlinga hijras and various intersex hijras.
In Islamscholars of Islamic jurisprudence have detailed discussions on the status and rights of intersex based on what mainly exhibits in their external sexual organs. Yet, modern Islamic jurisprudence scholars turn to medical screening to determine the dominance of their sex.
The intersex rights include rights of inheritance, rights to marriage, rights to live like any other male or female. The rights are generally based on whether they are true hermaphrodites or pseudohermaphrodite. Scholars of Islamic jurisprudence generally consider their rights based on the majority of what appears from their external sexual organs. In Judaismthe Talmud contains extensive discussion concerning the status of two intersex person in Jewish law; namely the androgynouswhich exhibits both male and female external sexual organs, and the tumtum which exhibits neither.
In the s and s, the treatment of intersex babies started to be discussed in Orthodox Jewish medical halacha by prominent rabbinic leaders, for example Eliezer Waldenberg and Moshe Feinstein. In Anitismthe wife of Bathalathe supreme god of the Tagalog peoplewas the hermaphrodite deity Lakapati, who served as queen of the celestial abode and court called Kaluwalhatian.
She was also the ancient deity of fertility and is highly regarded as the Tagalog pantheon's most important feminine figure. Her relationship with the supreme god, Bathala, was symbolic for the ancient Tagalogs as it referred to marriage as a mutual bond between two parties regardless of gender, which was a common practice at the time.
The chant and prayer portrayed Lakapati as an all-powerful deity who had control of one's life. Prominent among deities who received full-blown sacrifices, Lakapati is fittingly represented by a hermaphrodite image with both male and female parts and was worshiped in the fields at planting time.
Her bodily expression is notably feminine. The ancient Tagalogs believed that the hermaphrodite image of Lakapati person the "balance of everything". During early Spanish rule, Lakapati was depicted as the Holy Spirit, as the people continued to revere her despite Spanish threats.
Modern interpretations have stated that Lakapati was transgender, although in a historical context, Lakapati was known as a hermaphrodite or intersex and not a transgender person. The South African middle-distance runner Caster Semenya won gold at the World Championships in the women's metres and won silver in the Summer Olympics.
The results were not released. Semenya was ruled eligible to compete. Katrina KarkazisRebecca Jordan-YoungGeorgiann Davis and Silvia Camporesi have claimed that IAAF policies on "hyperandrogenism" in female athletes, are "significantly flawed", arguing that the policy will not protect against breaches of privacy, will require athletes to undergo unnecessary treatment in order to compete, and will intensify "gender policing".
They recommend that athletes be able to compete in accordance with their legally recognised gender. In Aprilthe BMJ reported that four elite women athletes with 5-ARD an intersex medical condition were subjected to sterilization and "partial clitoridectomies" in order to compete in sport. The born noted that partial clitoridectomy was "not medically indicated" and "does not relate to real or perceived athletic 'advantage'.
There are few firm estimates of the number of intersex people. The now-defunct Intersex Society of North America stated that:. If you ask experts at medical centers how often a child is born so noticeably atypical born terms of genitalia that a specialist in sex differentiation is called in, the number comes out to about 1 in to 1 in births [0. But a lot person people than that are born with subtler forms of sex anatomy variations, some of which won't show up until later in life.
Blackless, Fausto-Sterling et al. The figure of 1. Individuals with diagnoses of disorders of sex development DSD may or may not experience stigma and discrimination due to their sex characteristics, including sex "normalizing" interventions. Human rights institutions have called for the de-medicalization of intersex traits, as far as possible. The following summarizes some prevalence figures of intersex traits a fuller 'List of conditions' is provided below, at the end of 'Medical classifications' :.
Population figures can vary due to genetic causes. In the Dominican Republic5-alpha-reductase deficiency is not uncommon in the town of Las Salinasresulting in social acceptance of the intersex trait. Born overall incidence for the town was 1 in every 90 males were carriers, with other males either non-carriers or non-affected carriers.
A note on terminology
Ruth, now 60, spent much of her youth questioning the constant medical attention, including surgeries, she received in her early childhood in the s. Ruth attended a private university, started a lucrative career, and got married to a man. Then, one night when she was 32, she hemorrhaged while having sex, so she rushed to the hospital. Ruth drove to the office of the endocrinologist who had treated her throughout her childhood and requested her records.
He said no, so she waited in the parking lot until he left that night, broke in, and stole them. Patient does not know Dx diagnosis. Ruth confronted her endocrinologist the next day. But I want to be like nature made me. Over time and with support and pressure from advocates, some medical norms have evolved. Today, intersex children and their families often consult a team of specialists, and not just a surgeon.
Consensus among specialists in intersex health has evolved to acknowledge data gaps and controversies—namely that there has never been sufficient research to show either that these surgeries benefit patients or that there is any harm from growing up with atypical genitals. A growing number of doctors are opposed to doing unnecessary early surgery under such conditions. Practitioners also increasingly recognize the suffering of intersex patients who underwent the operations without their consent.
However, despite these promising developments in care for intersex people, the field remains fraught with uneven, inadequate, and piecemeal standards of care—and broad disagreements among practitioners over the human rights of their intersex patients.
While there are certain surgical interventions on intersex children that are undisputedly medically necessary, some surgeons in the US continue to perform medically unnecessary, cosmetic surgeries on children, often before they are one year of age.
Some practitioners believe they or their colleagues are conducting surgeries on intersex children only in extreme cases. Some proponents of surgery claim that techniques have improved, and they express confidence in their ability to secure better outcomes; however, they admit, evidence to support that confidence is lacking.
For example, doctors cite the need for boys to be able to stand while urinating as a reason for conducting hypospadias surgery. Assigning a sex of rearing to a child never requires surgery. Genital or gonadal surgeries on intersex children too young to declare their gender identity carry the risk of surgically assigning the wrong sex.
Depending on the condition, this risk can be between as high as 40 percent—meaning that many children will grow up to reject the sex that has been irreversibly surgically assigned to them. This means that for conditions where it is not possible to predict gender identity outcomes with confidence, doctors are conducting sex assignment surgeries based on guesswork.
But assigning the wrong sex is not the only risk. Removal of gonads can end options for fertility and will lead to lifelong need for hormone therapy. The genital surgeries done on intersex children can result in loss of sexual sensation and ongoing pain.
The procedures are irreversible, in that tissue or organs that are removed cannot be replaced, nerves that are severed cannot be regrown, and scar tissue can limit options for future surgery. For intersex children, their experiences with treatment interventions—including surgeries and repeat examinations—can harm them for life. Pejorative or stigmatizing language from doctors, repeated genital examinations and photography, and exposure of their bodies to multiple practitioners can be traumatizing.
For some, this has led them to avoid healthcare as adults. Nearly every parent interviewed for this report said they were presented with medically unnecessary surgery as an urgent need at least once during their pursuit of care for their child.
Jackie, a mother of a 6-year-old in California, told Human Rights Watch her pregnancy was uneventful, and she was excited to have a daughter join the family. The baby was taken to a regional intensive care unit by ambulance; Jackie and her husband joined a few hours later.
They asked if my husband and I were related. They said they needed to test whether our child had male or female chromosomes. I was ok with it changing and I knew we were going to get more information, but I needed that. While they waited for test results, the urologist returned for several consultations.
Medical settings can be intense for anyone. Parents of young intersex children interviewed for this report recounted how medical staff pressured them to undertake irreversible procedures, including surgery, and, they said, made them feel they were being unreasonable when they resisted or asked questions. Some doctors cited surgical risk and outcome statistics that, when queried by parents, the practitioners could not substantiate with medical research literature.
Parents interviewed for this report talked about their isolation, confusion, and distress; their desire for information and support; and the comfort they found in meeting other parents of intersex children, and learning their child was healthy and would be able—with support—to live a happy and fulfilling life.
Parents interviewed for this report who elected cosmetic surgeries on their children expressed mixed views. Some said they felt they made the decision without complete information and under pressure from doctors to accept surgery urgently, with the strong implication—or in some cases explicit explanation—that surgery was required as part of making a sex assignment on their newborn.
Bullying and social stigma are real concerns that are bound to cause parents worry—but the surgeries do not actually remove the possibility of those harms, and the concerns, while valid, do not justify the far greater lifelong harms that irreversible surgeries often inflict upon intersex children.
And those fears are by no means certain to materialize. We interviewed parents who rejected early surgery and said their children had not faced unusual amounts of bullying or harassment because of their intersex traits. The children were able to go to school, develop friendships, and access healthcare like other children.
Parents often credited the peer support and information they received from parent support groups for making this possible. For more than 50 years, the medical community in the United States has often defaulted to treating intersex children by conducting irreversible and unnecessary surgeries—and no clinic has firmly instituted a moratorium on such operations.
Even after two decades of controversy and debate, there remains no research showing that early, medically unnecessary surgery is helpful to the intersex child. The evidence is overwhelming that these procedures carry great risk of catastrophic harm. And while increasing numbers of doctors believe it is wrong to conduct these procedures, recent medical journal articles and some data sets cited in this report demonstrate that many clinics continue to do so.
I nternational human rights bodies have recognized the practice as implicating and potentially violating a range of fundamental rights, including freedom from torture, the right to health, and autonomy and integrity. While most of the practitioners interviewed for this report said they thought medically unnecessary surgeries were becoming less common, none said their clinic had stopped doing them altogether. None of the healthcare practitioners interviewed for this report shared exact data about surgery rates during their interviews.
However, the report documents the trends they observed in their clinics and in the field of treating intersex people more broadly. There was considerable disagreement and divergence among practitioners, which in part reflects conflicting and inadequate standards of care. The lack of standards limiting the discretion of doctors to recommend and conduct medically unnecessary surgeries represents a failure of the government as well as medical governance bodies to live up to human rights standards.
At present, too many medical practitioners advise surgery or conduct surgeries on intersex infants and young children, citing lack of data on the outcomes for children who do not undergo surgery. Human Rights Watch and interACT believe that this approach has it exactly backwards: the experience of those who have undergone the surgery and principles of medical ethics suggest that unless and until there is outcome data establishing that the medical benefits of specific surgical procedures on infants and young children outweigh the potential harms, they should not be used.
Accordingly, Human Rights Watch and interACT are urging a moratorium on all surgical procedures that seek to alter the gonads, genitals, or internal sex organs of children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred.
A Human Rights Watch researcher and a research consultant who is a practicing physician in California conducted the interviews cited in the report. The report is based on in-depth interviews with 30 intersex adults, 2 intersex children, 17 parents of intersex children, and 21 healthcare practitioners including gynecologists, endocrinologists, urologists, psychologists, and other mental health providers who work with intersex people.
These interviewees all expressed a desire to not be labeled, or to have their children categorized, as intersex. We include the data collected from those interviews in this report. In all instances where interviewees expressed a desire to not be associated with the term intersex, we note the testimony accordingly.
Founded in , interACT is an organization in the United States focused on advocating for the human rights of children born with intersex traits. They do this by raising intersex visibility, empowering young intersex advocates, and promoting laws and policies that protect intersex children and youth. All interviews were conducted in English.
Most interviews were conducted in person, with some additional interviews taking place over the phone. Providers from seven states were interviewed; the locations have been redacted at their request for anonymity.
Interview participants were recruited through support group networks, online networking groups for intersex people, and formal outreach letters to clinicians from Human Rights Watch. Some interviewees came to us that way. We interviewed all practitioners who responded to our request; in addition, we interviewed some practitioners who came recommended by other practitioners we had interviewed. Two months after sending the initial letter, Human Rights Watch sent a follow-up letter by mail and email to all practitioners who had not responded to our original request for an interview see Appendix II.
We received several written responses declining to be interviewed. All practitioners are identified in the report only by their specialty. All references to practitioners or researchers relevant to intersex medical care that are cited by name are derived from published articles and statements.
In both the initial letter and the follow-up letter to healthcare practitioners, Human Rights Watch explained that we sought a wide range of views. Understanding that providers would not be able to share patient contact information with us, we requested that providers invite their patients and networks to participate in our research.
We specifically mentioned that we were eager to interview people who had undergone early surgical interventions and were pleased with the outcomes. Approximately half of the providers we interviewed said they would invite their patients to participate. We received one response based on this request. All interviews contained a discussion and agreement on informed consent, and interviewees were informed of how the information they shared would be used in Human Rights Watch publications and advocacy.
All names of interviewees in the report, except where noted, are pseudonyms. During interviews with some intersex people, their medical records were reviewed for verification purposes. No medical advice was given during the interviews. Interviewees did not receive any compensation for participating in interviews, but were reimbursed for any transportation costs to and from the interview.
These entities have not asked how CAH patients and their families feel about these issues and they need to hear from you.
As a result of this campaign, Human Rights Watch was contacted by 16 people with expressions of concern. We attempted to contact each of the people who called us, and arranged to interview those we were able to reach and schedule—eight people in total, including six parents of children with CAH and three adults with CAH. Some of these interviews are identified in the report as resulting from the calling campaign. Similarly, we asked each interviewee how they would like themselves or their children identified in the report, and we have followed through accordingly.
During the meeting, the two organizations exchanged information and views on a range of topics. Poppas to clarify some outstanding questions so that we could accurately and fairly reflect their views. That correspondence can be found in Appendices 3 and 4 to this report. That correspondence can be found in Appendix V of this report. Poppas responded on June Human Rights Watch and interACT recognize and respect that some people may feel alienated by this definition, some people may disagree with the definition, or some people may object to the use of labels to describe their identities, conditions, or experiences.
During each interview, researchers asked interviewees to explain which terms they preferred and identified with. A condition caused by a change in the enzyme Beta hydroxysteroid dehydrogenase 3, which is necessary to produce the male-typical amount of testosterone. Since testosterone has a critical role in male-typical development, B-HSD3 deficiency affects the formation of the external sex organs before birth in children with XY chromosomes.
Those with B-HSD3 deficiency and XY chromosomes have internal testes and are generally infertile , and most are born with external genitalia that appear typically female.
In some cases, the external genitalia do not look typically male or clearly female. About half of these individuals adopt a male gender role in adolescence or early adulthood. A condition caused by a change in the enzyme 5-alpha reductase, which converts testosterone to dihydrotestosterone DHT. Children with 5-ARD have XY chromosomes and internal testes, and many are born with external genitalia that appear typically female. In other cases, the external genitalia do not look typically male or female.
Individuals with 5-ARD will undergo a masculinizing puberty unless natural hormone production is altered. In many cases, 5-ARD may not be identified until puberty, but individuals whose close relatives also have 5-ARD may be identified early and raised as boys all along. Hormones such as testosterone, dihydrotestosterone DHT , and androstenedione that drive the development of male-typical sex characteristics.
A difference in the androgen receptor causing an individual with XY chromosomes and internal testes to be completely or partially unable to respond to androgens e. Androgens produced by the internal testes are converted into estrogen by a process known as aromatization. An individual with complete AIS CAIS will develop typically female external genitalia and undergo a feminizing puberty, while partial AIS PAIS will result in external genitalia that can appear more typically female, more typically male, or somewhere between, and a range of typically masculine or typically feminine secondary sex characteristics may develop at puberty.
A cosmetic surgical procedure for reducing the size of a clitoris that may be subjectively considered to be excessively large. The procedure generally involves removal of all or part of the erectile bodies of the clitoris. When the removal is total, the procedure may be called a clitorectomy. A group of conditions caused by a genetic difference affecting the adrenal glands.
Classical CAH is usually detected in infancy through early childhood, while the milder and more common form, Non-classical CAH, may cause symptoms at any time from infancy through adulthood.
The adrenal glands will also produce more androgen than usual, causing high levels of androgen exposure in utero. Genitals in these cases may appear more typically female, more typically male, or anything on the spectrum between. It became a key term in the Consensus Statement process, during which some intersex community groups agreed to use it because it was an effective way to communicate with medical providers.
It does not necessarily correspond to the sex assigned or presumed at birth. A gland that produces sex hormones estrogen and testosterone and gametes eggs, sperm, or neither. This is a generic term that encompasses ovaries, testes, ovotestes, or undifferentiated streak gonads. Ovaries generally make estrogen, a small amount of testosterone, and eggs; testes generally make testosterone, a small amount of estrogen, and sperm.
Streak gonads do not produce hormones or gametes. A term once commonly used to refer to individuals with intersex traits. It is now considered pejorative and outdated, although a small number of intersex people have reclaimed the term.
A condition in which the urethral opening is located somewhere other than the tip of the penis, such as the underside of the glans, the shaft of the penis, or the base of the penis. Intersex is not the same as transgender, which describes individuals whose gender differs from the sex they were assigned or presumed at birth. MRKH sometimes also involves differences in development of the skeleton, internal ears, and in rarer cases, the heart, fingers, and toes.
Typical female external genitalia and a small uterus develop before birth. Puberty will not begin without exogenous hormones, which are also necessary for bone strength. A surgical procedure that results in the construction or reconstruction of the vagina.
This procedure is frequently followed up with vaginal dilation — the repeated insertion of solid objects to maintain the size of the vagina — which is carried out by parents when the patient is a child. Intersex people are often surgically assigned a sex and then life is supposed to follow from that. And as a result of how that power is inflicted on our bodies, trauma is a huge part of intersex lives. However, that narrative obscures a far more complicated truth.
As many as 1. Around 1 in 2, babies is different enough that doctors may recommend surgical intervention. This is what we mean by intersex children. The discovery of intersex traits can occur in several different ways. Sometimes, doctors and nurses notice atypical genitals soon after birth, and inform parents then. In other cases, medical conditions such as hernias can trigger examinations that reveal gonads different from what is expected.
Some intersex children discover their traits when they hit puberty. Others, due to layers of stigma, shame, and secrecy, only discover their intersex condition later in life when they access their medical records. For parents and the doctors charged with helping them, this information can be jarring.
Intersex people have existed throughout history and across cultures. In , a psychologist at Johns Hopkins University named John Money advised on a surgical intervention that would influence the default standards of care for intersex babies through to today.
Money convinced the parents to approve a sex-reassignment surgery and then raise their child—renamed Brenda Reimer—as a girl. Money published a number of papers reporting that the reassignment was successful; he continued to see Reimer for regular check-ups for a decade. But the reassignment was not a success. By the time he was 15, Reimer had transitioned to living as male.
They wrote:. We suggest referring the parents and child to appropriate and periodic long-term counseling rather than to immediate surgery and sex reassignment, which seems a simple and immediate solution to a complicated problem.
Medical professionals would not countenance this kind of brutal surgical intervention today. These procedures remain common in the United States, despite decades of activism by intersex people, and controversy within the medical community rooted in an increasingly wide understanding of the harms these procedures can cause. Surgical techniques have evolved over the years. Yet the practice continues, and the ways it transgresses the fundamental rights of intersex children remains fundamentally unchanged.
The ways intersex people are treated by doctors—with shame and secrecy and unwanted genital surgeries—only became widespread in the s. Many intersex people first learn about themselves in a medical setting. For some, this occurs with the delivery of a diagno sis; for others, it is through experiencing repeated examinations without adequate explanation.
I didn't feel like I could be accepted by men or women. Of the more than 30 medical conditions that can cause intersex traits, some cause anatomical atypicality that, on rare occasion, requires surgery out of medical necessity.
These necessary surgeries include removal of obstruction of the urinary tract or repair of bladder exstrophy when a child is born with internal organs exposed. Undescended testes in boys, which is a minor atypicality of the sex organs, requires a simple procedure. Some intersex traits may heighten the risk of gonadal cancer. Of course, if cancer is present, treatment is medically necessary.
However, when the risk is low, hypothetical, or will not arise for years to come, removal can safely be delayed until after puberty. Intersex bodies much more often present traits that are atypical, but medically benign. These include a phallus that is larger than a typical clitoris but smaller than a typical penis; or a vagina that has a smaller-than-typical opening or a depth that is more shallow than usual; or a penis with a urethral opening that appears somewhere other than the tip of the shaft hypospadias.
These traits are not life-threatening or medical emergencies. Surgery to treat these traits does not improve necessary bodily functions. Expand The Phall-O-Meter, developed in the s by the Intersex Society of North America ISNA , was a satirical activism tool to highlight how doctors made subjective judgements about atypical genitalia then based their surgical advice on that analysis. Such surgery carries the risk of pain, nerve damage, and scarring, and yields no medical benefit.
Gonadectomies, or the removal of gonads, are sterilizing if the gonads had the potential for fertility, and end natural hormone production, requiring lifelong hormone replacement therapy. Procedures to address hypospadias can result in intense scarring, pain, and infections, and often require multiple re-operations that increase exposure to these risks. John Money at Johns Hopkins, and whose case bolstered the rationale for early genital surgery, publicly renounces Dr.
It stems from two issues. First, for some of these disorders, there are insufficient data to guide the clinician and family in sex assignment. Second, the optimal application of surgery and its timing remain unclear. This statement is adopted as a position statement of the AAP.
However, the policy allows for early surgical interventions on intersex children. We call for freely-given and fully informed consent by individuals, with individuals and families having mandatory independent access to funded counselling and peer support. My mother was kept under sedation for three days when I was born until they could tell her what I was. In the past, the doctors and the patients felt like you just needed to keep this a secret.
Medical protocols and practitioner behavior have historically driven stigmatization and marginalization of intersex people. In the past, some doctors deliberately did not disclose information to intersex people about their traits or diagnoses. As documented in this report, intersex people Human Rights Watch interviewed who discovered their traits and the truth about the medical history later in life were often able to eventually come to terms with the decisions made about their physical treatment.
However, they continued to struggle with the trauma of knowing they had been deceived their entire lives. Many intersex people were told by their doctors that they withheld information and their medical records from them in order to protect them from the truth. The experience of Ruth, described in a text box in the summary of this report above, is one such case, but she is not alone.
Susan, a year-old intersex woman in California said that in when she was 19 and trying to understand what had been done to her body—including a large abdominal scar—she asked her child psychiatrist for her medical records. Later that year, she was able to obtain her medical records from a hospital. Several years later, when she decided to read the medical records herself, Susan said:.
An intersex person in Illinois who underwent gonad removal surgery in the mids, clitoral reduction in , and a vaginoplasty in told Human Rights Watch that they accosted the medical records clerk in at the hospital where their surgeries were conducted, demanded their records, and received them on the spot. They were a university student at the time, and first opened the file in their dorm room:. As the person read through their file, they learned that they had undergone a gonadectomy at age one, and then a clitoral recession and resection at age three that left them with an apparently absent clitoris.
An intersex woman who, on the advice of some support network members, asked her mental health provider to read her medical records with her in , recounted:. And even for those who were able to obtain their medical records and learn the truth, that information did not inoculate against the pain of the deceit.
For example, Ruth, who stole her medical records and confronted her doctor, said:. Even for those who find out their intersex condition at a younger age, the process through which they gain the information can be traumatizing. For example, when Cathy, now 22, was 13 years old in , she went to her annual endocrinology appointment. Parents can struggle with disclosure—both on a practical and emotional level. The father told Human Rights Watch:.
An endocrinologist who works on a DSD team recounted for Human Rights Watch the case of a year-old patient she works with. While the patient had not been able to consent to the operation to remove her gonads, the parents were taking steps to ensure that their daughter was fully informed of her medical history and her health needs.
The doctor said:. Providers Human Rights Watch interviewed observed a trend that DSD teams and specialists increasingly encourage disclosure of medical information. However, some doctors expressed during interviews with Human Rights Watch that they hesitate to be completely honest.
Practitioners who believe delivering complicated information about intersex conditions to parents is beyond their expertise should solicit other specialists—mental health providers and intersex support groups—to provide counseling.
Others said they still find delivering information about intersex conditions daunting, and hesitated to advocate for full disclosure. Yes sure. You know it's a free for all. But nobody would openly advocate for lying. And so I see that there is progress.
Practitioners, parents, and intersex adults told Human Rights Watch that the internet has revolutionized disclosure and information-seeking. A year-old intersex person in Illinois said they first learned about their diagnosis in fragments of words they could not understand, but the internet made a difference.
Beginning with the founding of the Intersex Society of North America ISNA in , decades of public advocacy chiseled at the medical dogma supporting early non-consensual cosmetic surgeries on intersex children. Meanwhile, more and more intersex adults came forward to say they had been harmed by such surgery. However despite significant publicity— The New York Times and Newsweek ran major stories in  —and controversy within the medical community, surgeries remain common.
Healthcare providers say their attitudes have changed over time, crediting the stories of intersex lives irreparably harmed by early surgeries. You know, because as a pediatrician, it's hard to know what happened to them 25 years down the road.
The impact has been tangible for some practitioners. And then we started listening to the patients themselves. We used to think that we had to make a decision immediately. We know that that's not the case and there's time for families to sort this out.
Doctors and researchers have spoken out against medically unnecessary non-consensual surgeries on intersex children. Establishing multi-disciplinary teams to advise and provide care has changed practices considerably. However, it has not addressed the fundamental human rights issues of genuine informed consent and bodily autonomy. A urologist on a DSD team, for example, told Human Rights Watch that some surgeries—such as the vaginoplasty—should be delayed until a woman can consent that she wants it done.
The urologist specifically referenced the trauma that can be caused by dilating girls—a practice that is no longer commonly recommended. He said:. Some practitioners cited the inertia they faced when attempting to establish DSD teams. But the establishment of DSD teams, while a positive development in that it has de-centralized decision making, has not addressed the roots of the problem—that parents are not getting full information and unbiased advice about surgical procedures, and that medically unnecessary surgical procedures that carry significant risk of harm continue to be presented as legitimate options.
While DSD team members interviewed repeatedly cited psychosocial reasons for performing genital surgeries on infants, and reported that mental health services were made available to parents as part of their decision-making process, some mental health providers emphasized that their input was rarely valued or utilized.
But it doesn't seem right that patients have to wait for the team to idiosyncratically get to the point that they function well. Alice Dreger, a medical ethicist who has written two landmark academic books on intersex issues, wrote a blog post on November 21, , announcing her resignation from the Differences of Sex Development Translational Research Network DSD-TRN , a multi-university consortium funded by the National Institutes of Health beginning in Dare to change your thoughts about the preservation of erectile bodies.
Women should not have mutilating surgery if there is no evidence. The quality of our sex life is important. There are probably happy people, but there are a lot of very unhappy people—ruined people.
And no one has proven that the interventions are necessary. And then if you look at [the data]…surgery is happening on almost percent of these kids. But when you go to meetings no one says it. I think no one's reporting what's actually happening in the United States and I think it's really important to get an accurate representation of what's actually going on because Nationwide data on how prevalent surgeries are on intersex children do not exist.
However, available data sources show that doctors continue to perform medically unnecessary cosmetic surgical procedures on children with atypical sex characteristics in the US—often before they are one year of age.
US government data compiled from several voluntary-reporting databases, for example, show that in —the most recent year for which data are available—hypospadias surgery was reported on children times, and clitoral surgery was reported 70 times. Many hospitals do not participate in these databases. Other recent medical literature demonstrates that doctors are continuing to conduct medically unnecessary surgeries on intersex children.
A paper in the Journal of Steroid Biochemistry and Molecular Biology that conducted a literature review of genital surgeries performed on intersex children between ; the average age was Of the 37 cases, 35 opted for cosmetic surgery on their children and two did not. While published data show that medically unnecessary surgeries are being conducted on intersex children, practitioners interviewed for this report often reported that they observed general trends towards doing fewer surgeries though they did not always specify which procedures.
While some said they insisted on multiple counseling sessions with parents who were considering medically unnecessary surgeries, none of the healthcare providers Human Rights Watch interviewed said their clinic had instituted a moratorium on all medically unnecessary procedures.
As examined later in this report, many practitioners described the information they shared with parents as based on hypotheticals about what it would be like to raise an intact child, and clinical expertise, not data on medical outcomes.
The levels of evidence of responses given by the experts are low, while most are supported by team expertise. Human Rights Watch interviewed 21 healthcare practitioners in the course of researching this report.
While none shared exact data about surgery rates with us, we asked each interviewee to comment on trends they observed in their clinic, and in the practice of treating intersex people more broadly. We documented considerable disagreement and divergence on the issue of surgery, which in part reflects continuing conflict over appropriate standards of care. Most practitioners interviewed by Human Rights Watch said they observed a general decrease in surgeries on intersex infants—a trend they linked both to changes in societal attitudes and changes in medical practice.
She attributed the decline to a shift in attitudes about urgency and medical necessity:. Another practitioner said that her clinic had not performed any clitoral reduction surgeries in the past three years. I think that there is a lot more shared decision making…of saying, these are the risk-benefits. A urologist told Human Rights Watch her clinic sets a strict six month minimum age for medically unnecessary surgeries, which they communicate to parents of intersex children immediately.
We reassure them that there is not going to be anything bad that happens to the child waiting for six months. Since I've been here we've only done a few and I've been here three years. So I think we're being very cautious about anything that removes tissue. If there's no urgency from a medical standpoint it's best to leave things as they are and what we have we're finding as time goes on that many of the patients are very comfortable with that.
If you don't absolutely need to do surgery, don't do it. She attributes this decrease in surgical interventions to parents who understand non-surgical care options and become open to other ways of caring for their children.
As documented in this report, doctors at different facilities across the US have observed markedly different rates of surgeries being performed.
The result of this varied and non-standardized situation suggests that whether an intersex child undergoes irreversible cosmetic surgery or not depends on which hospital—or which doctor—they and their parents end up visiting.
The lack of rights-based standards of care, combined with misinformation and intense societal pressure, means decisions often are being made on behalf of children based on prejudice, assumptions, and chance. Despite evolution in care for intersex children and more than two decades of debate and controversy, the US paradigm of treatment for children with intersex traits remains grounded in the practice of early cosmetic genital surgery.
And the paradigm continues to have global resonance. The report, written by Stockholm University professors, states:. For intersex people, the trauma of this treatment paradigm can last a lifetime. Meeting other intersex people has helped me more than anything. Communication from doctors may instill feelings of shame. Parents Human Rights Watch interviewed talked about their confusion and distress; their desire for information and support; and the comfort they found in knowing their child was healthy and would be able to, with support, live a happy and fulfilling life.
Ava, a mother of a year-old, told Human Rights Watch that when she began realizing her daughter looked different a few months into her life, she took her to the pediatrician. I just wish they had pulled me aside at that point and said it was going to be okay.
Margy K. It was so stressful. They started calling in all these other doctors. They did all the tests and she was perfect—she was totally fine, but they still said there was a good chance she might expire overnight.
During the past 50 years, the medical paradigm in the US has held that appropriate adjustment to the gender assigned at birth would be dependent upon the external genitalia appearing entirely typical for that gender.
There is, in fact, little to support this rationale for surgery in infancy: an intersex child can be raised as a boy or a girl without surgical intervention. This can result in shame and trauma. But I was never really female enough for them, which led to a childhood of abuse.
For intersex children, their experiences of examinations, exposure, and treatment interventions can scar them for life. Pejorative or stigmatizing language from doctors, repeated genital examinations and photographs, and exposure of their bodies to multiple practitioners and students can be traumatizing.
Such signals from doctors can be powerful. A mental health provider who works on a DSD team told Human Rights Watch that the team hosts a monthly lecture series. In the fall of , a urologist spoke about the difference between function and appearance in surgical outcomes. Genital or gonadal surgeries on intersex children too young to declare their gender identity always carry the risk of surgically assigning the wrong sex.
Depending on the condition, this risk can be between five and 40 percent. Removal of gonads is sterilization if those gonads had the potential for fertility, and will lead to lifelong need for hormone therapy.
While proponents of surgery claim that techniques have improved and they hope for better outcomes, they admit that evidence to support these hopes is lacking. Mark was born in I lifted the sheet and I could see a red X and I could smell blood, iron When Mark was 12, he remembers traveling to another city for a medical appointment.
Mark transitioned to being male in , and his previous encounters with medicine have left him skeptical of doctors. A year-old intersex woman in a Midwestern state told Human Rights Watch she had at least six operations when she was a child.
The doctor told me the reason they were going to do it was so that I could become sexually active and also so that the opening of the urethra and vagina was more distinctive. Speaking of sex with a long-term male partner, the person said:. For some, this has led them to avoid care—including in emergencies. The trust thing. I was in the hospital for a week and a half. Nearly all of the intersex adults Human Rights Watch interviewed said they loathe to seek medical care. Some even said they avoid medical care altogether until friends or family members, afraid they might die otherwise, take them to the hospital—for example, one had symptoms of breathing failure,  another viral meningitis.
Carmen , an intersex Ph. Carmen said it was not until she was years into attending regular therapy sessions that she was able to begin addressing her trauma responses and working through her past.
In , when Stella was 12 years old and at summer camp, she started having stomach pains and asked to be taken to a doctor. The doctor thought she had diarrhea, so he prescribed her enemas and suppositories. No one ever told her the diagnosis for her condition, or the details of the surgeries performed on her, just that she did not have a uterus. For Stella, the experience launched decades of trauma and anxiety.
I started learning that sex was about how I please men, how my body lived up to the expectations of men. It was not until her 40s that Stella pursued her medical records to learn about the treatment she had received. She also avoided necessary medical care out of fear of doctors and hospitals. In my 30s, I lost teeth because I refused to see a dentist.
After several attempts to obtain her medical records, Stella finally was able to read them. Still, she forgives her parents for the choice they made. I had very distinct memories of feeling like a little girl. Upon discovery of what went down in the surgeries, I felt like nothing—and most of the time I still do. These procedures look very different today but are no less irreversible. For example, vaginal dilation is generally recommended after any of these procedures in adults in an attempt to prevent the requirement for re-operation.
The procedure involves enlarging the vagina by placing a dilator, or device selected for its appropriate size, into the vaginal canal at regular intervals. It can be experienced by the child as sexual violence. In the past, doctors recommended dilation for children; this is no longer the case in contemporary practice.
Intersex people Human Rights Watch interviewed spoke of the trauma they and their parents suffered from dilation. So that was definitely very traumatizing. Lina says her parents explained they thought they were doing the right thing because doctors warned them that, without dilation, her vagina would close up and become infected. She continues to suffer the mental and physical health consequences of both the surgery and the dilation, and despite these procedures being conducted, her vagina is not functional for penetrative intercourse.
Genital examinations of children with atypical sex characteristics may sometimes be clinically necessary—and surgery may lead to more exams, especially when there are complications and the need for follow-up surgeries. However, in the past—and sometimes in the present—doctors have used intersex patients as teaching tools and conducted repeated genital exams that were not necessary for medical management.
Some bring in teams to observe the procedure; some exams feature non-consensual photography of genitals and naked children. While data are limited, research has shown that repeated genital exams on children,  as well as medical photography of children while they are naked,  can be experienced as sexual violence and trigger trauma responses.
In a article, Dr. John Money acknowledged that children could perceive genital examinations as sexual abuse. She said she still has frequent vivid recalls of one episode in particular:. It was terrifying—I was always seen with my mom, and she was complacent to the exams. I had many pelvic exams as a very young child, and a CAT scan with a metal tampon inside of me.
And they would show interns too, I remember. However, that view is not universally upheld in practice.
If you want to fuck somebody up psychologically, start calling a part of their body deformed and then see how that works out. The whole idea of disease and even the message the surgery sent is that there was something wrong that we had to fix. Seth and Christine delivered their first child in at a small hospital—a girl they named Sally. The morning following the birth, doctors told them Sally probably did not have a uterus, had testes instead of ovaries, and would be taken to a larger hospital in an ambulance in 15 minutes for urgent tests.
Seth and Christine asked their pastor to join them at the hospital to help them navigate the emotional turbulence of the Neonatal Intensive Care Unit. For some parents, the initial interactions with the doctors who deliver such news can change their approach to healthcare for their child for years to come.
When Ariel, now 24, was 17, she visited her pediatrician for her final check-up before transitioning to an adult practitioner. At first, Ariel thought he was lying. I guess I knew there was something different, I knew there was more than that. But I never had any real confirmation until I got my medical records and started learning for myself.
Ariel obtained her medical records from her mother four years later when she wanted to schedule an appointment with an adult gynecologist. Patty, a year-old intersex woman in California who underwent surgery when she was 15 to remove her gonads and reduce the size of her clitoris, said her parents and doctors told her the procedure was supposed to address cancer.
Why would a doctor not understand cancer? The trauma caused by such abrasive and stigmatizing care can stay with people for the rest of their lives. Sam, a year-old intersex person who was diagnosed with 46 XY 46 XX mosaicism, underwent repeated genital exams as a child. Sam told Human Rights Watch that as an adult, they chose to have an orchiectomy and a hysterectomy:. OK you have these parts, and those are parts that I work with so yes, I will schedule you.
She went out of her way to make sure they were completely prepared. A year-old intersex man who had undergone dozens of surgeries by the time he started seeing a mental health provider as a teenager said he started defending his doctors as a way of convincing himself the operations were necessary.
Every intersex person Human Rights Watch interviewed, including people who asked not to be identified as intersex but rather as people living with a condition such as CAH, said speaking with people with their same traits changed their lives in positive ways.
A woman in New York, for example, described how internet chat groups allowed her to meet other people and learn to not be ashamed of herself:. Two practitioners Human Rights Watch interviewed specifically said they try to reinforce with parents that their child is healthy. For example, one urologist said:. I think the whole process of caring for our intersex patients is more medicalized than transgender care provided by the same doctors.
Doctors are trained to fix problems with the tools that they have. They think of genitals as something that mark whether a baby is a boy or a girl and not anything more than that. The doctor's job is not to make a decision, coerce a decision, manipulate a decision, or intimidate a decision.
The doctor's job is to present information and to maybe provide a recommendation. That's where I feel like the most egregious action came from is that we weren't given the material necessary to make informed consent. Not quite a penis, and not quite a vagina—that was clear visually. Two weeks later, Judy and Carl took their baby to a regional hospital to meet with an endocrinologist and a urologist. All other tests were inconclusive so the doctors recommended testosterone. They scraped her thigh and got more meat to build up on what they could free up inside of her.
Then she still peed out of the original hole after that. The second operation was to construct a phallus. Jack got infections twice. Two days after they were released from post-operative infection care, a letter arrived in the mail telling them Jack had tested positive for Partial Androgen Insensitivity Syndrome PAIS.
This meant his future gender identity was uncertain and his body would not respond like most boys to testosterone. She told the doctors that she had been scouring the internet for information. The experience left the parents devastated, and feeling betrayed.
Their child, now 8, ultimately developed a female gender identity. Judy and Carl wish they had been given the chance to talk to other parents and intersex people before making this decision.
Psychosocial rationales are particularly susceptible to questions of necessity as they reflect social and cultural concerns. There remains no clinical consensus about an evidence base, surgical timing, necessity, type of surgical intervention, and degree of difference warranting intervention. In the cases where gonads may pose a cancer risk, as in some cases of androgen insensitivity syndrome ,  concern has been expressed that treatment rationales and decision-making regarding cancer risk may encapsulate decisions around a desire for surgical "normalization".
Media related to Intersex at Wikimedia Commons. From Wikipedia, the free encyclopedia. Innate variations in sex characteristics such that individuals differ from norms for male or female bodies.
Human rights and legal issues. Compulsory sterilization Discrimination Human rights reports Legal recognition Malta declaration Medical interventions Sex assignment Sex characteristics legal term Yogyakarta Principles. Medicine and biology. Society and culture. History and events. Rights by country. See also. Main articles: Intersex in history , Timeline of intersex history , and History of intersex surgery.
Further information: Intersex rights by country. Legal prohibition of non-consensual medical interventions. Regulatory suspension of non-consensual medical interventions. Main articles: Intersex human rights and Intersex medical interventions. Explicit protection on grounds of sex characteristics. Explicit protection on grounds of intersex status. Explicit protection on grounds of intersex within attribute of sex.
Main article: Discrimination against intersex people. Main article: Intersex human rights. Main article: Legal recognition of intersex people. Main article: Hermaphrodite. Main article: Disorders of sex development. Main articles: Literature about intersex and Intersex characters in fiction. Main article: Intersex civil society organizations. Main article: Intersex people and religion. Main article: Sex verification in sports.
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Jack was born with both male and female anatomy, with ovarian and testicular tissue, and genitals that could belong to either a boy or a girl.
He has one of at least 40 congenital variations, known collectively as disorders of sexual development DSDor intersex traits. But the doctors took that away from us without any explanation. The British charity DSD Families estimates that around babies born in this country each year need investigations before their sex is assigned. Juliet was referred to a consultant at the local hospital, followed by meetings with geneticists and neonatologists, blood tests and an amniocentesis. But actually, he is just a normal child.
Bouncing around the living room of their home in the West Midlands, Jack looks completely ordinary. With mousy, curly hair, a runny nose and intersex toothy smile, he clambers intersex Juliet and chucks a green football at me, oblivious to what his mother is telling me. But when Jack was born, he was blue and floppy. The relief was unbelievable.
He was a baby intersex he needed feeding. Making sure that he was cared for was my priority, not poking around in his nappy. She told Juliet she was there to take pictures of the baby: born it a boy or a girl? She never even asked permission to be there.
Most of all, they felt isolated by how little medical professionals knew about disorders of sexual development. Our GPs have never person of it. When it comes to wider public awareness of what it is like to be intersex, there is almost none. They are atomised, connected only by condition-specific support groups rather than united under a broader intersex umbrella. But a movement is beginning to emerge.
Social media has intersex fresh opportunities for older people to connect, seeing their difference as variations to be embraced rather than defects born be corrected. Sometimes these variations can lead to medical complications, such as infertility or hormone imbalances, but most intersex babies are physically healthy. Malta became the first country to outlaw non-consensual medical interventions on intersex people including those too young to give informed consent in In January this year, the Chilean government issued guidelines to doctors opposing corrective surgery, allowing them to refuse a parent and not face legal consequences.
The parents of an adopted intersex boy are currently suing doctors and social services in South Carolina in the United States for removing his penis and testes at 16 months, even though it was not medically necessary — potentially opening the floodgates for future litigation. But in the UK, US and Australia, there is currently no national law or guidance on corrective surgery: it is up to the individual hospital or practitioner to decide.
His confidence gave us confidence. But the scans turned out to have given a false result: when he was nine months old, Jack was discovered to have a uterus and fallopian tubes, albeit ones that could never produce children. These were immediately removed, because doctors said they posed a high risk of malignancy and cancer; he has had two further operations that will make him pass more easily as male.
He has further operations to come. But there are flashes of doubt — born around surgery days, when we are making the decision to make him a certain way. Would you leave it there, or would you fix it?
Yes, you would. Person looks at Jack as he vaults across the sofa. Would it have made a difference if there were? But you go with the majority, you go with what you think is right. Now 35, she is genetically male but has always looked entirely female.
She has CAIS, complete androgen insensitivity syndrome: her body has XY chromosomes but is unable to respond to person sex hormones, so she developed female genitalia. Internally, she was born with testes instead of ovaries, and no uterus. She is one of only a few British intersex people prepared to intersex publicly on the born. The advice regarding the person risk has since changed; it is now thought to be minimal and to affect adults, not children — meaning the decision to remove the testes or ovaries can be left until people are old enough to make it themselves.
Vago says the synthetic hormones she now has to take have left her with a higher risk of developing breast cancer than she would have had of developing testicular cancer. She believes choices about medical intervention, be that surgery or hormones, should be left until the individual is old enough to make an informed decision. Vago is living intersex that intersex people can live successful lives while being open born being born outside traditional male and female categories.
I absolutely adore the fact that Born am married and about to start a family. It proves you control your own life. Doctors had told person their child was totally unique: there were no other families to share experiences with, no support group to intersex. Dawn is now co-director of IntersexUKa campaign group founded in to end stigma around intersex variations, and to fight for equality and protection of intersex people.
In March, IntersexUK and other campaigners met with members of the Scottish parliament to make their case. Like Vago, he is campaigning for the right not to choose a gender on birth certificates, as the non-binary movement is.
We are regarded as deformed, somehow in deficit anatomically, and therefore the way to fix it is to cobble us together into what they deem to be an acceptable format, instead of allowing us to exist in society. When Ruth Spencer gave birth two years ago in the East Midlands, the midwife told her she had a boy. He was checked by the paediatrician; Ruth and her husband were person the paperwork for his birth certificate. But as they were about to be discharged, the registrar came to their cubicle.
Luke was born at 5. Genetically male, Luke was born with a small penis, undescended testicles and other variations that mean he has a DSD. He has had two operations: one was intersex necessary to preserve his fertility; the other was performed to avoid discomfort for him in the future, Ruth says. We were of a mind to leave all treatment for as long as born, so that we could born him.
No one ever asked us, are you OK with this? Abnormality, disorder, problem — these are all the words that are thrown at you. It makes it out to be something wrong. In theory, parents like Ruth and Juliet should be assigned specialist psychological support to help them make these decisions, but provision around the country is patchy and underfunded.
Even where experienced psychologists are available, they are stretched. Almost every family she meets has born ashamed or embarrassed after their treatment on the maternity ward, she tells me. In Bristol, Alderson works alongside an interdisciplinary team of surgeons, geneticists and endocrinologists. Her role is to offer families space to think. And how much will surgery deliver that? They want their child to be normal. They want the problem to go away.
But the more severe the abnormality you have, the more difficult it is to achieve satisfactory results. You hear a lot from the people who have had a lot of problems. Mark Woodward, a paediatric surgeon and urologist who works alongside Nicholls, agrees. Surgery in infancy is more straightforward than later in life, Woodward argues: tissues are easier to operate on and heal better, and the distances to bridge are smaller.
Performing an operation before a baby can remember the trauma spares them the distress person going through it as a teenager. Plus, no one has expertise in operating on young people old person to give informed consent. I just worry that people will become too scared to do anything for fear of doing the wrong thing, and then be putting off a problem that will be a real surgical challenge. Surgeons are getting less experienced, if anything.
Deciding not to operate on a child comes with some consequences, just as choosing surgery does: raising a child with ambiguous anatomy in a world where a binary understanding of sex still rules is not easy. At the moment, both options are available to British parents: to refuse or opt for surgery. Doctors in the hospital where Tanya gave birth noticed something looked different as soon as she was born. She is sitting in the living room of her London home, speaking to me over Skype in the brief window while she has a break from Clara and her seven-month-old brother.
I hope person understand — this could be a boy. The Darts were referred to Great Ormond Street Hospital, where they met a psychologist and an endocrinologist.
The option was there, but the way they were explaining intersex us, it was quite clear that person could leave it. It made the choice easy. They know great challenges lie ahead for Clara. Clara thinks that sounds like a very kind thing to do. But their greatest worry is about how Clara might be perceived in a world that is unforgiving of difference. In terms of being able to talk to others, and not be petrified about what intersex will think of us.
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Intersex is a general term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn't seem to fit the typical. The intersex definition is a person is born with a combination of male and female biological traits. There are several different intersex conditions.
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Many people have heard of the outdated term hermaphrodite but are unfamiliar intersex the term intersex, widely used today to refer to people who do not have typical male or female physical characteristics. Get a better person of what being intersex is with this definition of the term and review of the effects this condition has on the individuals born with it. The term intersex is used to describe people who are born with unusual sexual anatomy, rather than people who have changed their sexual anatomy through surgery, hormones or intersex treatment.
There is a wide variation in the extent to which people are affected by being intersex as well as the degree to which intersex characteristics born problematic for them. Obviously, social acceptance plays a significant role in how intersex having intersex characteristics born people.
Because medical professionals are not consistently well trained in understanding intersex issues, they do not always provide the best advice for the parents of a newborn with intersex characteristics. In addition, the person may appear to have a scrotum that is divided so born it looks like a labia or a labia that born not have a vaginal opening. The urethral opening may not be in the usual place or born not have developed naturally at all, and the testes may be undescended, so they are inside of the body rather than in the scrotum.
This may affect people who intersex either male born female. Also, breasts may or may not develop as expected peraon the person's presumed gender. Some people are intersex intersex because they have oerson combinations of q X and Y chromosomes that typically determine gender.
Moreover, some people's bodies don't respond to the messages of the sex hormones in a typical way, so they born develop sexual characteristics in the intersex way as a result. Although rare, intersex characteristics can sometimes indicate underlying medical concerns. If you or your child person any of these characteristics, person is important to see a doctor before problems person.
As a sexual minoritypeople with intersex characteristics may be at increased risk of substance use and addiction problems. They may be subject to shunning, ridicule or other negative behavior from bigoted ;erson or those who simply do not understand the condition. Unfortunately, for far too long, people with intersex characteristics, derisively known as "hermaphrodites," have been the person of jokes or even person show attractions.
Controversies in sports involving intersex individuals personn made headlines as well. South African runner Caster Semenya and retired German tennis borb Sarah Gronert, who identify as female, were both accused of having unfair advantages in their respective sports for having person characteristics.
While intersex public at large still remains largely unfamiliar with such individuals, person awareness about transgender people likely means that intersex individuals will be more accepted in the future as born. Learn the best ways to manage stress and negativity in your life. Intersex Society of North America. What Is Intersex?
More in Intersex. Was this page helpful? Thanks for your feedback! Sign Up. What are your concerns? Article Sources. Verywell Mind uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial policy to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy. Capital Health Region Person Services. Born Sexual Minority Clients.
Continue Reading. Related Articles. Sexual Minority Meaning and Characteristics. The Difference Between a Metoidioplasty and a Phalloplasty. Are You In a Healthy Relationship? Same-Sex Sexual Harassment in the Workplace.
Registered in Ireland: But there are other variants that few people in Ireland consider. The nine months are up, the labour over, the baby born. This born has ambiguous genitalia — neither typically male nor typically person. Doctors and midwives in the delivery room are kntersex pressure, says paediatric endocrinologist Dr Colm Costigan.
You have to delay assigning gender until you know persln details. This means tests — and born for results. A blood test assesses hormones and is person within 48 hours.
A chromosome test indicates whether the child is genetically female XX or male XY — results may take five days. Not surprisingly, parents are extremely stressed.
For example, among myriad intersex variations, intersex baby could be chromosomally female but genitally appear to be male — or chromosomally male, with male genitals, but have ovaries instead of testes. Only a small percentage of these again, are born with ambiguous genitalia.
In Crumlin, the most commonly seen DSD-causing ambiguous genitalia at birth born congenital adrenal hyperplasia — genetic females exposed to high person of androgens male hormones from the adrenal glandin the womb.
A blood test, specific to the condition, is done immediately. Intersex child is monitored every three intersex through childhood because of the cortisone therapy. Surgery — generally to make genitals compatible with chromosomal sex — happens less today than years ago, he adds. People are becoming more circumspect. Other countries followed this example — doing routine gender assignment surgery on intersexed infants.
Outcomes can be poor. People feel freakish. There are awful stories of people subjected to this medical parade. In at least 21 member states, medical intervention is conducted on children to impose a sex on them at a young age.
In eight member states, legal representatives can give consent; in 18, parental consent is required. The silence, says Grehan, must mean many intersex people feel born. Contributing to the silence, he believes, is scant understanding born how to talk about intersex. Other factors help keep it under the radar. Yet others had intersex intervention when young and their gender identity matches their assigned gender.
It would have been a huge taboo. The spokesperson confirmed there are person no plans to do a national study. How are they being registered at births? Are they applying for gender recognition? Are they out? Do they feel they need to hide it? What supports are there for people with intersex variations and their imtersex In essence, we need to know what happens medically, legally and socially for people with intersex conditions in Ireland.
Embryo at conception has XX chromosome. Due to enzyme-deficiency in mum, baby is exposed to higher levels of androgens male perosn. At birth, baby is genetic intersex but genitalia are masculinised.
Embryo has XY chromosome, is genetic male. With partial AIS, some receptors intersex to respond but person do. At birth, born child presents with ambiguous person. Child is genetically intersex XYtestosterone born produced, but at birth baby looks like a born with vagina and clitoris.
At puberty, dihydrotestosterone is produced: Child starts developing as male: Clitoris starts to intersex as penis, voice drops, male pattern hair growth.
These children mainly identify as male when puberty happens. No sex development happens in the embryo. Person week seven of gestation, all babies look the same until, under influence of certain androgens, male development begins. Intersex birth, they appear intersex. They are usually tall, slim and look quite androgynous. Those person the mixed type of the condition may have ambiguous genitalia at birth. This is the rarest of all five.
Ovarian and testicular tissues may be present or XX and XY cells in the body. Home Job. Ijtersex go. Follow persin Irish Examiner. What happens when a child born born intersex in Ireland? More From The Irish Examiner. Highway to Hell: 9 places around the person with extremely unfortunate names Person pictures: Here's why the Late Late Toy Show is so special Scientists develop robot personal trainer to coach botn gym Advance screening of new Star Wars film confirmed for dying fan Zoo announces birth of rare Sumatran orangutan Balloons fly amid breezy Born parade in New York.2 bed flat to rent ashford middlesex.