Intersex

Intersex, in humans and other animals, is a variation in sex characteristics including chromosomes, gonads, and/or genitals that do not allow an individual to be distinctly identified as male or female. Such variation may involve genital ambiguity, and combinations of chromosomal genotype and sexual phenotype other than XY-male and XX-female. Intersex infants with ambiguous outer genitalia may be surgically 'corrected' to more easily fit into a socially accepted sex category. Others may opt, in adulthood, for surgical procedures in order to align their physical sex characteristics with their gender identity or the sex category to which they were assigned at birth. Others will not become aware that they are intersex—unless they receive genetic testing—because it does not manifest in their phenotype. Some individuals may be raised as a certain sex (male or female) but then identify with another later in life, while others may not identify themselves as either exclusively female or exclusively male. Research has shown gender identity of intersex individuals to be independent of sexual orientation, though some intersex conditions also affect an individual's sexual orientation.

Intersexuality as a term was adopted by medicine during the 20th century. Intersex conditions received attention from intersex activists, who criticized traditional medical approaches in sex assignment and sought to be heard in the construction of new approaches. The passports and identification documents of some nationalities have adopted "X" as a valid third category besides "M" (male) and "F" (female).

Research in the late 20th century has led to a growing medical consensus that diverse intersex bodies are normal—if relatively rare—forms of human biology. Milton Diamond, one of the most outspoken experts on matters affecting intersex people, stresses the importance of care in the selection of language related to such people.

Definition
In humans, biological sex is determined by five factors present at birth:


 * the number and type of sex chromosomes;
 * the type of gonads—ovaries or testicles;
 * the sex hormones,
 * the internal reproductive anatomy (such as the uterus in females), and
 * the external genitalia.

People whose five characteristics are not either all typically male or all typically female are intersexed.

Conditions and scope


There are a variety of opinions on what conditions are and are not intersex. For instance, the defunct Intersex Society of North America (ISNA) definition states that the following conditions "sometimes involve intersex anatomy" (note this does not mean they are always intersex conditions):


 * 5-alpha reductase deficiency
 * androgen insensitivity syndrome
 * aphallia
 * clitoromegaly
 * congenital adrenal hyperplasia
 * gonadal dysgenesis (partial & complete)
 * hypospadias
 * Klinefelter syndrome
 * micropenis
 * mosaicism involving sex chromosomes
 * ovo-testes (formerly called "true hermaphroditism")
 * partial androgen insensitivity syndrome
 * progestin-induced virilisation
 * Swyer syndrome
 * Turner syndrome

See also:
 * 17-beta-hydroxysteroid dehydrogenase deficiency
 * cryptorchidism

Prevalence
The prevalence of intersex depends on which definition is used. According to the ISNA definition above, 1 percent of live births exhibit some degree of sexual ambiguity. Between 0.1% and 0.2% of live births are ambiguous enough to become the subject of specialist medical attention, including surgery to assign them to a given sex category (i.e. male or female). According to Fausto-Sterling's definition of intersex, on the other hand, 1.9 percent of human births are intersex. She writes, While male and female stand on the extreme ends of a biological continuum, there are many bodies [...] that evidently mix together anatomical components conventionally attributed to both males and females. The implications of my argument for a sexual continuum are profound. If nature really offers us more than two sexes, then it follows that our current notions of masculinity and femininity are cultural conceits. [...] Modern surgical techniques help maintain the two-sex system. Today children who are born "either/or-neither/both" — a fairly common phenomenon — usually disappear from view because doctors "correct" them right away with surgery.

According to Leonard Sax the prevalence of intersex "restricted to those conditions in which chromosomal sex is inconsistent with phenotypic sex, or in which the phenotype is not classifiable as either male or female" is about 0.018%.

Signs
There are a range of variations between female and male types of genitalia; the Prader scale demonstrates this and is well illustrated here.

Ambiguous genitalia
Ambiguous genitalia appear as a large clitoris or small penis.

Because there is variation in all of the processes of the development of the sex organs, a child can be born with a sexual anatomy that is typically female, or feminine in appearance with a larger-than-average clitoris (clitoral hypertrophy), or typically male, masculine in appearance with a smaller-than-average penis that is open along the underside. The appearance may be quite ambiguous, describable as female genitals with a very large clitoris and partially fused labia, or as male genitals with a very small penis, completely open along the midline ("hypospadic"), and empty scrotum.

Fertility is variable. According to some, the distinctions "male pseudohermaphrodite", "female pseudohermaphrodite" and especially "true hermaphrodite" are vestiges of outdated 19th century thinking. According to others, the terms "male pseudohermaphrodite", and "female pseudohermaphrodite" are used to define the gender in terms of the histology (microscopic appearance) of the gonads.

"True hermaphroditism"
A "true hermaphrodite" is defined as someone with both testicular and ovarian tissue.

In 2003, researchers at UCLA published their studies of a lateral gynandromorphic hermaphroditic zebra finch, which had a testicle on the right and an ovary on the left. Its entire body was split down the middle between female and male, with hormones from both gonads running through the blood. This is an example of mosaicism or chimerism.

This extreme example of hermaphroditism is quite rare.

Ovotestes
Though naturally occurring true hermaphroditism in humans is unknown, there is, on the other hand, a spectrum of forms of ovotestes. The varieties include having two ovotestes or one ovary and one ovotestis, often in the form of streak gonads. Phenotype is not determinable from the ovotestes; in some cases, the appearance is "fairly typically female"; in others, it is "fairly typically male," and it may also be "fairly in-between in terms of genital development."

Intersex activist Cheryl Chase is an example of someone with ovotestes.

Other diagnostic signs
In order to help in classification, methods other than a genitalia inspection can be performed:

For instance, a karyotype display of a tissue sample may determine which of the causes of intersex is prevalent in the case.

Management
Clinical management of intersex can be categorized into one of the following two:

However, there are other categorization systems of management of intersex, which falls into neither category.
 * 1) Treatments: Restore functionality (or potential functionality)
 * 2) Enhancements: Give the ability to identify with “mainstream” people, e.g., breast enlargement surgery

In any case, the most common procedure is surgery.

Surgery
The exact procedure of the surgery depends on what is the cause of a less common body phenotype in the first place. There is often concern as to whether surgery should be performed at all. A traditional approach to the management of intersexuality has been surgery. However, some such as Alice Dreger say that surgical treatment is socially motivated and, hence, ethically questionable; without evidence, doctors regularly assume that intersex persons cannot have a clear gender identity. This is often taken further with parents of intersex babies advised that without surgery their child will be stigmatized. Further, since almost all such surgeries are undertaken to fashion female genitalia for the child, it is more difficult for the child to present as male if they later find they identify as or are genetically male. 20-50% of surgical cases result in a loss of sexual sensation (Newman 1991, 1992).

Typically, surgery is performed at birth. Intersex advocates such as Anne Fausto-Sterling in her Sexing the Body argue surgery on intersex babies should wait until the child can make an informed decision, and label surgery without consent as genital mutilation.

Typical sex development
The common pathway of sexual differentiation, where a productive human female has an XX chromosome pair, and a productive male has an XY pair, is relevant to the development of intersex conditions.

During fertilization, the sperm adds either an X (female) or a Y (male) chromosome to the X in the ovum. This determines the genetic sex of the embryo. During the first weeks of development, genetic male and female fetuses are "anatomically indistinguishable," with primitive gonads beginning to develop during approximately the sixth week of gestation. The gonads, in a "bipotential state," may develop into either testes (the male gonads) or ovaries (the female gonads), depending on the consequent events. Through the seventh week, genetically female and genetically male fetuses appear identical.

At around eight weeks of gestation, the gonads of an XY embryo differentiate into functional testes, secreting testosterone. Ovarian differentiation, for XX embryos, does not occur until approximately Week 12 of gestation. In normal female differentiation, the Müllerian duct system develops into the uterus, Fallopian tubes, and inner third of the vagina. In males, the Müllerian duct-inhibiting hormone MIH causes this duct system to regress. Next, androgens cause the development of the Wolffian duct system, which develops into the vas deferens, seminal vesicles, and ejaculatory ducts. By birth, the typical fetus has been completely "sexed" male or female, meaning that the genetic sex (XY-male or XX-female) corresponds with the phenotypical sex; that is to say, genetic sex corresponds with internal and external gonads, and external appearance of the genitals.

Conditions
The final body appearance does not always correspond with what is dictated by the genes. In other words, there is sometimes an incongruity between genetic (or chromosomal) and phenotypic (or physical appearance) sex. Citing medical research regarding other factors that influence sexual differentiation, the Intersex Society of North America challenges the XY sex-determination system's assumption that chromosomal sex is the determining factor of a person's "true" biological sex.

Complications
In the cases where nonfunctional testes are present, there is a risk that these develop cancer. Therefore, doctors either remove them by orchidectomy or monitor them carefully. This is the case for instance in androgen insensitivity syndrome.

Identification documents
Nepal, the United Kingdom, Australia, Portugal, Uruguay, and New Zealand are states that took steps to allow for transgender and intersex people to list their gender as other than male or female. Australian and New Zealand authorities allow passports to have a third gender option which is marked "X" meaning "indeterminate/unspecified/intersex" instead of "F" for female or "M" for male. The move was seen as removing discrimination against transgender and intersex people so they will no longer have to choose between "M" (male) or "F" (female). It has been proposed that in addition to the honorific Mr. for male and Ms. for female, that the honorific Mx. be used for intersexuals and that this be implemented by intersexual persons requesting UK government agencies, companies, and organizations to make this change, although realistically this will eventually require parliamentary legislation.

Language
Research in the late 20th century has led to a growing medical consensus that diverse intersex bodies are normal, but relatively rare, forms of human biology. Milton Diamond, one of the most outspoken experts on matters affecting intersex people, stresses the importance of care in the selection of language related to such people.

Hermaphrodite
A hermaphrodite is a plant or animal that has both male and female reproductive organs. Until the mid-20th century, "hermaphrodite" was used synonymously with "intersex".

Currently, however, hermaphroditism is not to be confused with intersex, as the former refers only to a specific phenotypical presentation of sex organs and latter to more complex combination of phenotypical and genotypical presentation, as well as social self-identification. Using "hermaphrodite" to refer to intersex individuals can be stigmatizing and misleading.

Transgender
The term transgender describes the condition in which one's gender identity does not match one's assigned sex. Some individuals may be both intersex and transgender but the two terms are not equivalent.

Disorders of sex development
"Disorders of sex development" (DSD) is a term that has both supporters and opponents. It is defined to include congenital conditions in which development of chromosomal, gonadal, or anatomical sex is atypical.

A number of critics of traditional terminology, including the now defunct Intersex Society of North America, intersex activists, and some medical experts moved to eliminate the term "intersex" in medical usage, replacing it with disorders of sex development in order to avoid conflating anatomy with identity. Members of the Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology accepted this term in their "Consensus statement on management of intersex disorders" published in the Archives of Disease in Children and in Pediatrics. It is not known if this consensus is still accepted, and the ISNA is now a defunct group since its founder left it.

Other intersex people, activists, supporters, and academics have contested the adoption of the terminology and its implied status as a "disorder", seeing this as offensive to intersex individuals who do not feel that there is something wrong with them, regard the DSD consensus paper as reinforcing the normativity of early surgical interventions, and criticizing the treatment protocols associated with the new taxonomy. Alternatives to categorizing intersex conditions as "disorders" have been suggested, including "variations of sex development". Organization Intersex International (OII) questions a disease/disability approach, argues for deferral of intervention unless medically necessary, when fully informed consent of the individual involved is possible, and self-determination of sex/gender orientation and identity.

History
Intersex people are treated in different ways by different cultures. In some cultures, such people were included in larger "third gender" or gender-blending social roles along with other individuals. In most societies, intersex people have been expected to conform to either a female or a male gender role. Surgeons pinpointed intersex babies as an emergency once they were born. The parents of the intersex babies were not content about the situation. Psychologists, sexologists, and researchers had a theory that it was better if the baby's genitalia were changed when they were younger than when they were a mature adult. The scientist thought that helped with the confusion.

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. An example is one of the Sumerian creation myths from more than 4,000 years ago. The story has Ninmah, a mother goddess, fashioning mankind out of clay. She boasts that she will determine the fate – good or bad – for all she fashions. Enki, the father god, retorts as follows.


 * Enki answered Ninmah: "I will counterbalance whatever fate – good or bad – you happen to decide." Ninmah took clay from the top of the abzu [ab = water, zu = far] in her hand and she fashioned from it first a man who could not bend his outstretched weak hands. Enki looked at the man who cannot bend his outstretched weak hands, and decreed his fate: he appointed him as a servant of the king.


 * ... [Three men and one woman with atypical biology are formed and Enki gives each of them various forms of status to ensure respect for their uniqueness] ...


 * Sixth, she fashioned one with neither penis nor vagina on its body. Enki looked at the one with neither penis nor vagina on its body and gave it the name Nibru [eunuch(?)], and decreed as its fate to stand before the king."

During the Victorian era, medical authors introduced the terms "true hermaphrodite" for an individual who has both ovarian and testicular tissue, verified under a microscope, "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. In Europe, the term 'intersexual' was first to be used before the Second World War. The first suggestion to replace the term 'hermaphrodite' with 'intersex' came from British specialist Cawadias in the 1940s. This suggestion was taken up by specialists in the UK during the 1960s, by both those who rejected Money's framework (then emerging from the USA), and those who endorsed that approach.

Since the rise of modern medical science in Western societies, some intersex people with ambiguous external genitalia have had their genitalia surgically modified to resemble either female or male genitals. Since the advancements in surgery have made it possible for intersex conditions to be concealed, many people are not aware of how frequently intersex conditions arise in human beings or that they occur at all. Contemporary social activists, scientists and health practitioners, among others, have begun to revisit the issue. Awareness of the existence of physical sexual variation in human beings has increased.

Some groups, such as ISNA, and some clinicians, such as those at University College Hospital London, have questioned the practice of performing genital corrective surgery on intersex children. Dialogue between what were once antagonistic groups of activists and clinicians has led to changes in medical policies and how intersex patients and their families are treated in some locations. There are intersex groups, such as OII, who argue that the various degrees of intersex are natural human variations that should not be subject to correction.

There are not many available cases concerning children with intersex conditions, but one important one that has led the way into changing the framework of how children of intersex conditions should be treated was the Colombian Case. The case has significantly reduced the power doctors and parents have to decide surgical procedures on the children's ambiguous genitalia. By the Constitutional Court of Colombia, on Case 1 Part 1 (SU-337 of 1999), doctors are obligated to inform parents on all the aspects of the intersex child. Parents can only consent to surgery, if they have received accurate information, and consent can not be given after the child reaches an age of five. By then the child will have, supposedly, realized their gender identity. . The court case has led to setting legal guidelines to how doctor's surgical practice on intersex children.

The writer Anne Fausto-Sterling coined the words herm (for "true hermaphrodite"), merm (for "male pseudo-hermaphrodite"), and ferm (for "female pseudo-hermaphrodite"), and proposed that these be recognized as sexes along with female and male. Her terms were "tongue-in-cheek"; she no longer advocates these terms even as a rhetorical device. The activist Cheryl Chase criticized these terms in a letter to The Sciences, also criticizing the traditional standard of medical care. Chase announced the creation of the Intersex Society of North America.

Sociological approaches
The first sociologist to work on 'intersexuality' was Harold Garfinkel in 1967 using a method derived from sociological phenomenology he called ethnomethodology. He based his analysis on the everyday commonsense understandings of 'Agnes', a woman undergoing social and surgical gender reassignment. Ethnomethodology was also used in 1978 by Kessler and McKenna, who argue that, while gender can be seen as a social accomplishment, cross-cultural studies render gender as problematic as they highlight how it is usually regarded as a fact, when it can be shown to be constructed in different ways. They point to different cultural approaches to gender roles, and how 'hermaphrodites' and 'berdaches' are incorporated socially, as disruptive to fixed ideas about sex, gender, and gender-roles. They argue that what we 'know' about gender is grounded in the 'everyday social construction of a world of two genders', where gender attribution seems more important than gender differentiation.

Gender and sexual self-identification
Some people with intersex conditions self-identify as intersex, and some do not.

Surgery
Depending on the type of intersex condition, surgery may be performed for aesthetic or social purposes. Unlike other aesthetic surgical procedures performed on infants, such as corrective surgery for a cleft lip (as opposed to a cleft palate), genital surgery may lead to negative consequences for sexual functioning in later life (such as loss of sensation in the genitals, for example, when a clitoris deemed too large or penile is reduced/removed), or feelings of freakishness and unacceptability, which may have been avoided without the surgery. In other cases, negative consequences may be avoided with surgery.

Opponents maintain that there is no compelling evidence that the presumed social benefits of such "normalizing" surgery outweigh the potential costs. Opponents claim this led to the degrading interpretation that females are essentially castrated males. This view overlooks the embryological origin of the penis/clitoris.

Defenders of the practice argue that it is necessary for individuals to be clearly identified as male or female in order for them to function socially. The child was seen to be in need of correction in order to be socially accepted in the future. However the situation proved to be far more complex than was originally thought. In the first surgeries, parents were not often consulted on the decision-making process when choosing the sex of the child. Doctors took it upon themselves to decide what was best based on certain forms of evidence, such as hormonal levels, or other extreme forms. Biologist Anne Fausto Sterling states that in the past doctors would decide if the sex were to be male or female based on the measurements of the penis or the clitoris. For example in one study of 100 newborn males, those with penises measuring in at 2.9 to 4.5 centimeters are deemed acceptable and therefore designated as male. However one that measured less than 1.5 centimeters would undergo a female assignment. The idea of the environment and social norms shaping the sex of the child was completely ignored.

However, many intersex individuals have resented the medical intervention, and some have been so discontented with their surgically assigned gender as to opt for sexual reassignment surgery later in life. The Declaration of Montreal first demanded prohibition of unnecessary post-birth surgery to reinforce gender assignment until a child is old enough to understand and give informed consent. This was detailed in the context of existing UN declarations and conventions under Principle 18 of The Yogyakarta Principles, which called on states to:

Intersex advocates and experts have critiqued the necessity of early interventions, citing individual's experiences of intervention and the lack of follow-up studies showing clear benefits. Specialists at the Intersex Clinic at University College London began to publish evidence in 2001 that indicated the harm that can arise as a result of inappropriate interventions, and advised minimising the use of childhood surgical procedures.

Studies done on individuals with intersex conditions or DSDS, have revealed how surgical intervention has had psychological effects, leading to the impact on well being and quality of life. Genitoplasty, plastic surgery done on the genitalia, does not ensure a successful psychological outcome for the patient and might require psychological support when the patient is trying to distinguish a gender identity. Other than the possible negative psychological outcomes, surgeries, like with a vaginoplasty, can have physical outcomes, one common one being scarring, which can be a factor to insensitivity. Other cases where vaginoplasty has caused complications, is that the implant or artificial vagina will not stay in place, or need further surgeries. One of the reasons there are many complications is doctors who do not specialize in genitoplasty or similar surgeries (phalloplasty, vaginoplasty) usually reconstruct the child's ambiguous genitalia.

Experience of medical procedures and photography
Individuals report experiences of the trauma associated with intervention. The experiential similarities of medical interventions and child sexual abuse have been discussed.

Photographs of intersex children's genitalia are circulated in medical communities for documentary purposes; an example of this appears in the medical section 3.2.1 above. Problems associated with experiences of medical photography of intersex children have been discussed along with the ethics, control and usage.

"The experience of being photographed has exemplified for many people with intersex conditions the powerlessness and humiliation felt during medical investigations and interventions".

Gender dysphoria
The proposed revisions for DSM-5 include a change from using Gender Identity Disorder to Gender Dysphoria. This revised code now specifically includes intersex people as people with Disorders of Sex Development. This move has been criticised by one intersex advocacy group in Australia, and criticism from the intersex community has been lodged with the appropriate DSM5 subcommittee. The UK Intersex Association (UKIA) is also highly critical of the label ‘disorders’ and points to the fact that there was minimal involvement of intersex representatives in the debate which led to the change in terminology. UKIA supports the suggestion put forward by Profs. Milton Diamond and Hazel Beh that the more neutral and less pathologising term "Variations of Sex Development" would be more appropriate in medical discussion.

Books
Jeffrey Eugenides' novel Middlesex (2002) is narrated by an intersex character who discusses the societal experience of an intersex person.

Intersex author Thea Hillman's memoir Intersex (For Lack of a Better Word) was published in 2008.

Kathleen Winter's 2010 novel Annabel is a fictional account of an intersex person growing up in Labradour, Canada.

Abigail Tarttelin's 2013 novel Golden Boy is about an intersex teenager.

Comics
The Japanese manga series I.S., first published in 2003, features intersexual characters and how they deal with intersex-related issues and influence the lives of people around them.

In 2012 the character Shining Knight was revealed as DC Comics’s first intersex character in Demon Knights #14.

Film
The 1995 film Hermaphrodites Speak! is a 30 minute documentary film from the United States in which several intersex people at the first retreat of the Intersex Society of North America discuss their lives and the medical treatment and parenting they received.

In 2000, Porter Gale, Masters in Documentary Film and Video from Stanford University,and Laleh Soomekh, produced XXXY, a documentary revealing the intersex individuals' opinions on the surgical procedures done on children with intersex conditions or DSDs, while providing a medical professional's opinion as well. The film clearly shows the dissatisfaction and the painful repercussions for the children who went through sex reassignment surgeries.

In 2006, Ajae Clearway produced an award winning documentary giving voice to various intersex individuals and their experiences with surgeries, and advocates for informed consent. The film One in Two Thousand educates the viewer on notions of sexuality, and the opposition on unnecessary surgeries.

The 2007 Argentine film XXY centres around a young intersex person who is assisted in presenting as a girl with medication. The film deals with discrimination, sexuality and gender identity.

In 2010, Australian documentary-maker Phoebe Hart directed an autobiographical documentary of her personal experience as an intersex person. The film, Orchids, My Intersex Adventure, explores the various social scenarios faced by many intersex individuals.

In 2012, the film Intersexion was awarded the Best Feature Documentary award at the Documentary Edge Festival, hosted by Mani Bruce Mitchell, CEO of the first Intersex Trust in the world (ITANZ). The film was directed by Grant Lahood. The film follows Mani as s/he visits intersex people in America, Ireland, Germany, South Africa and Australia.

Magazines
In 2013 the op-ed "Intersex, the Final Coming-Out Frontier," by intersex author Hida Vilora, was published in The Advocate.

TV and Radio
Intersex was discussed on British TV for the first time in 1966, and became a topic of interest for broadcast TV and radio in the United States and other countries from 1989.

In the 2000 Freaks and Geeks episode "The Little Things", Ken has to deal with the discovery that his girlfriend had been born with ambiguous genitalia.

In the 2009 episode of House entitled, "The Softer Side", a teenager with Genetic Mosaicism that is unaware of his (the gender his parents choose for him) condition develops dehydration and is admitted to Princeton Plainsboro Teaching Hospital.

In the 2010 Childrens Hospital episode "Show Me on Montana", Drs. Flame and Maestro try to convince a hermaphrodite child which gender to choose, with each doctor vying for their own gender.

The 2012 Emily Owens, M.D. episode "Emily and... the Question of Faith" featured an intersex baby.

Education
In secondary schools, biology and sex education instructors often place most emphasis on the most common XX and XY genotypes. Thus, people nowadays may be more likely to look towards the sex chromosomes than, for example, the histology of the gonads. However, according to researcher Eric Vilain at the University of California, Los Angeles, "the biology of gender is far more complicated than XX or XY chromosomes". Many different criteria have been proposed, and there is little consensus.

In 2002 at the Reform seminary Hebrew Union College-Jewish Institute of Religion in New York, the Reform rabbi Margaret Wenig organized the first school-wide seminar at any rabbinical school which addressed the psychological, legal, and religious issues affecting people who are intersex or transsexual. In 2003 Margaret Wenig organized the first school-wide seminar at the Reconstructionist Rabbinical College which addressed the psychological, legal, and religious issues affecting people who are intersex or transsexual.

Notable intersex people

 * Le Van Duyet, Nguyen Dynasty general and high-ranking mandarin.
 * Herculine Barbin—the 19th century memoirs of this French intersex person were published by Michel Foucault in 1980.
 * Sir Ewan Forbes, 11th Baronet, formerly Elizabeth Forbes-Sempill—in 1968 the Scottish courts confirmed Ewan Forbes' intersexuality cited in the correction of his birth certificate, placing him as the male heir to the family title, making him the 11th Baronet of Craigievar.
 * Georgina Somerset (née Turtle), first openly intersex person in the UK; she was active in the media from the mid-1960s.
 * Cheryl Chase, intersex activist.
 * Erik Schinegger, alpine skier.
 * Jim Sinclair, autism rights activist.
 * Lady Colin Campbell, British aristocrat and author of Guide to Being a Modern Lady.
 * Edinanci Silva, judoka and Gold medalist in the woman's half-heavyweight division at the Pan-American games.
 * Del LaGrace Volcano, visual artist and speaker on queer and intersex issues (e.g. the Critical Sexology Seminars, London). Describes his intersexuality as self-constructed.
 * Santhi Soundarajan, Indian athlete who competes in the middle distance track events. She was stripped of a silver medal won at the 2006 Asian Games after failing a sex verification test, disputing her eligibility to participate in the women's competition.
 * Mauro Cabral, Argentine intersex activist, writer, Co-director of GATE (Global Action for Trans Equality)
 * Cr Tony Briffa JP, Australian intersex and human rights activist, former President of the AIS Support Group Australia, and Deputy Mayor of the City of Hobsons Bay in Melbourne, Australia
 * Mani Mitchell, New Zealand intersex activist, member of the New Zealand Association of Counsellors (NZAC), The World Professional Association for Transgender Health (WPATH), International Transactional Analysis Association (ITAA).
 * Eden Atwood, American jazz musician, actress and an advocate for the civil rights of people born with intersex traits.

Discussion in media and on internet

 * There has been intense speculation about Caster Semenya, the South African middle-distance runner, being intersex. The way she has been dealt with by the sporting community and the media has itself been the subject of debate in the media.   Tests she was subjected to included what were described as humiliating genital photography.

Noted researchers on intersex development

 * John Money
 * Milton Diamond, professor of neurology, Univ. of Hawai'i at Manoa, and director of The Pacific Center for Sex and Society located at the University of Hawaii.
 * Anne Fausto-Sterling

Intersex organizations

 * Organisation Intersex International
 * AIS Support Group UK & International
 * AIS Support Group Australia
 * UK Intersex Association (UKIA)
 * Intersex Trust Aotearoa New Zealand (ITANZ)
 * Accord Alliance
 * Advocates for Informed Choice (Advocacy for Intersex Children) (AIC)