Intersex people in the United States have some of the same rights as other people, but with significant gaps, particularly in protection from non-consensual cosmetic medical interventions and violence, and protection from discrimination. Actions by intersex civil society organizations aim to eliminate harmful practices, promote social acceptance, and equality. In recent years, intersex activists have also secured some forms of legal recognition.
|Intersex rights in the United States|
|Protection of physical integrity and bodily autonomy||No|
|Protection from discrimination||In healthcare|
|Access to same rights as other men and women||No|
|Changing M/F sex classifications||Varies|
|Third gender or sex classifications||Varies|
Early accounts of intersex people in North America include those of English immigrant Thomas(ine) Hall, in 17th-century colonial Virginia and 19th-century Connecticut intersex man Levi Suydam, pronounced male and so eligible to vote. Early common law, like canon law, held that hermaphrodites were to be treated as male or female depending on the prevailing sex.
In September 2017, an intersex and non-binary student, Scout Schultz was shot dead at the Georgia Institute of Technology. In November 2017, Betsy Driver became the first intersex person openly elected to public office in the United States. Driver was elected as a council person in the New Jersey city of Flemington. Driver is the second publicly intersex person elected to office, following Tony Briffa in Australia.
Since the mid-twentieth century, U.S. physicians have considered intersex status in infants a "psychosocial emergency" and performed "normalizing" or "reconstructive" genital surgery without considering non-surgical alternatives (e.g., counseling). When deciding whether to assign the intersex infant "male" or "female," the factors typically considered are potential for fertility and sexual penetration. These surgeries still continue in the U.S. today despite being medically unnecessary (that is, chiefly cosmetic) and potentially injurious to the patient's sexual pleasure.
The U.S. intersex movement developed in the 1990s and 2000s, through the establishment of the Intersex Society of North America (ISNA) and the AIS Support Group USA (now called AISDSD) in the 1990s, and Advocates for Informed Choice (now interACT), Bodies Like Ours, Intersex Initiative, and Organisation Intersex International, (now the Intersex Campaign for Equality) in the following decade.
The Intersex Society of North America (ISNA) was a non-profit advocacy group founded in 1993 by Cheryl Chase to end shame, secrecy, and unwanted genital surgeries. Amongst other activities, it published the journal Hermaphrodites with Attitude.
Intersex activism between the late 1990s and mid 2000s led from demonstrating outside a national pediatric conference, to speaking inside clinical conferences, and the first human rights investigation into medical "normalization", by the Human Rights Commission of the City and County of San Francisco. However, coercive intersex medical interventions persist.
ISNA closed in June 2008 after supporting the creation of a new clinical term for intersex conditions, Disorders of Sex Development (DSD), albeit ambivalently as a means of opening "many more doors" and engaging with clinicians, and also supporting the establishment of a new organization, the Accord Alliance, set up to promote comprehensive and integrated approaches to healthcare. New organizations such as Intersex Campaign for Equality and interACT were since established with civil and human rights goals.
interACT has worked with MTV on the program Faking It, notable for providing the first intersex main character in a television show, and television's first intersex character played by an intersex actor. In 2017, interACT worked with model Hanne Gaby Odiele to tackle social taboos.
In October 1996, the American Academy of Pediatrics issued a press statement stating that:
- The Academy is deeply concerned about the emotional, cognitive, and body image development of intersexuals, and believes that successful early genital surgery minimizes these issues.
- Research on children with ambiguous genitalia has shown that a person's sexual body image is largely a function of socialization, and children whose genetic sexes are not clearly reflected in external genitalia can be raised successfully as members of either sexes if the process begins before 2 1/2 years.
- Management and understanding of intersex conditions has significantly improved, particularly over the last several decades ...
The statement was issued in response to the first public demonstration by intersex people and allies, outside the annual conference of the Academy, in Boston on October 26, 1996. Morgan Holmes has written that the demonstration happened after activists Max Beck and Holmes were excluded from the conference. She states that the pair went to deliver an address, "on long-term outcomes and to challenging their still-prevailing opinion that cosmetic surgery to "fix" intersexed genitals was the best course of action", but were "met, officially, with hostility and were escorted out of the conference by security guards". The demonstration, by Beck and Holmes, with allies from Transexual Menace, is now marked as Intersex Awareness Day.
A 2005 human rights investigation into the medical "normalization" of Intersex People, by the San Francisco Human Rights Commission is thought "likely to be the first human rights report into the treatment of intersex people, certainly in the English language."
- Infant genital surgeries and sex hormone treatments that are not performed for the treatment of physical illness, such as improving urinary tract or metabolic functioning, and have not been shown to alleviate pain or illness (hereafter referred to as "normalizing" interventions) are unnecessary and are not medical or social emergencies.
- "Normalizing" interventions done without the patient's informed consent are inherent human rights abuses.
- "Normalizing" interventions deprive intersex people of the opportunity to express their own identity and to experience their own intact physiology.
- It is unethical to disregard a child's intrinsic human rights to privacy, dignity, autonomy, and physical integrity by altering genitals through irreversible surgeries for purely psychosocial and aesthetic rationales. It is wrong to deprive a person of the right to determine their sexual experience and identity. ...
- It is ethically wrong to treat people differently or unfairly because they are perceived by others to be "monsters" or "oddities."— Human Rights Commission of the City and County of San Francisco
In 2005, Cheryl Chase, Alice Dreger and others called for the replacement of the word "hermaphrodite" with "Disorders of Sex Development" (DSD). Later the same year, a clinical "Intersex Consensus Meeting" of US and European pediatric endocrine societies adopted "DSD" as a replacement for both intersex and hermaphrodite in medical settings.
The new language of Disorders of Sex Development was always contentious as was seen as pathologizing. Scholars and activists, such as Georgiann Davis, and Morgan Holmes, Esther Morris Leidolf, and clinical psychologists like Tiger Devore regarded this shift as a retrenchment of medical authority over intersex bodies. In May 2016, interACT published a statement opposing pathologizing language to describe people born with intersex traits, recognizing "increasing general understanding and acceptance of the term "intersex"".
Research by the Lurie Children's Hospital, Chicago, and the AISDSD Support Group published in 2017 found that 80% of affected Support Group respondents "strongly liked, liked or felt neutral about intersex" as a term, while caregivers were less supportive. The hospital found that "disorders of sex development" terminology may negatively affect care, give offence, and result in lower attendance at medical clinics. The research results for "disorders of sex development" mirrored earlier results from a survey of a congenital adrenal hyperplasia support group, the CARES Foundation.
In 2013, Pidgeon Pagonis testified for interACT before the Inter-American Commission on Human Rights about the medical interventions they were subjected to as an intersex child, alongside Latin Americans Mauro Cabral, Natasha Jiménez and Paula Machado. In 2014, Anne Tamar-Mattis was published on medical interventions as torture in healthcare settings, in a book by the Center for Human Rights & Humanitarian Law at American University Washington College of Law.
In 2016, the United Nations Committee Against Torture asked the United States government to comment on reports of intersex medical interventions on infants and children, following submission of a report by interACT.
In June 2017, Joycelyn Elders, David Satcher, and Richard Carmona, three former Surgeons General of the United States published a paper at the Palm Center, citing a State Department statement and developments in Germany, Switzerland, Australia, Chile, Argentina, and Malta, and calling for a rethink of early genital surgeries on children with intersex traits. The statement reflected on the history of such interventions, their rationales and outcomes, stating:
When an individual is born with atypical genitalia that pose no physical risk, treatment should focus not on surgical intervention but on psychosocial and educational support for the family and child. Cosmetic genitoplasty should be deferred until children are old enough to voice their own view about whether to undergo the surgery. Those whose oath or conscience says "do no harm" should heed the simple fact that, to date, research does not support the practice of cosmetic infant genitoplasty.
In July 2017, Human Rights Watch and interACT published a report on medically unnecessary surgeries on intersex children, "I Want to Be Like Nature Made Me", based on interviews with intersex persons, families and physicians. The report states that:
Intersex people in the United States are subjected to medical practices that can inflict irreversible physical and psychological harm on them starting in infancy, harms that can last throughout their lives. Many of these procedures are done with the stated aim of making it easier for children to grow up "normal" and integrate more easily into society by helping them conform to a particular sex assignment. The results are often catastrophic, the supposed benefits are largely unproven, and there are generally no urgent health considerations at stake
The report found that intersex medical interventions persist as default advice from doctors to parents, despite some change in some regions of the U.S. and claims of improved surgical techniques, resulting in an uneven situation where care differs and a lack of standards of care, but paradigms for care are still based on socio-cultural factors including expectations of "normality" and evidence in support of surgeries remains lacking. "Nearly every parent" in the study reported pressure for their children to undergo surgery, and many reported misinformation. The report calls for a ban on "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."
In a 2017 interview for Harper's Magazine, Laurence Baskin, chief of pediatric urology at University of California, San Francisco, told journalist Sarah Topol "that he would recommend early surgery not just for 5-alpha but for 95 percent of known D.S.D. conditions ... Baskin classifies such operations as corrective surgeries, no different from fixing a cleft palate or clubfoot. "We basically treat them because they have a congenital anomaly"."
In response to the 2017 Human Rights Watch report, Associated Press reported opposition to a ban by CARES Foundation, arguing that parents should be able to agree to surgeries to "reduce the size of the clitoris" without considering "moral and philosophical agendas". Kyle Knight of Human Rights Watch responded that there's no evidence of a health risk, and "There are limits to what parents can do to their kids". interACT states that they are "unaware of any jurisdiction in the U.S. that enforces its own FGM laws in cases where the girl undergoing clitoral cutting has an intersex trait".
In November 2016, GLMA: Health Professionals Advancing LGBT Equality passed a new policy position on patients with differences in sex development, recommending "delay of any surgical interventions and gender-related medical interventions for DSD that are not deemed medically necessary".
Associated Press reported in July 2017 that the American Medical Association Board of Trustees is considering a policy statement "urging doctors to defer intersex surgery on infants and young children" "except when life-threatening circumstances require emergency intervention".
The case of M.C. v. Aaronson, advanced by interACT with the Southern Poverty Law Center was brought before the courts in 2013. The child in the case was born in December 2004 with ovotestes, initially determined as male, but subsequently assigned female and placed in the care of South Carolina Department of Social Services in February 2005. Physicians responsible for M.C. initially concluded that surgery was not urgent or necessary and M.C. had potential to identify as male or female, but, in April 2006, M.C. was subjected to feminizing medical interventions. He was adopted in December 2006. Aged 8 at the time the case was taken, he now identifies as male. The Southern Poverty Law Center states: "In M.C.'s condition, there is no way to tell whether the child will ultimately identify as a boy or a girl. Instead, the doctors decided to assign M.C. female and change his body to fit their stereotype of how a girl should look." The defendant in the case, Dr Ian Aaronson, had written in 2001 that "feminizing genitoplasty on an infant who might eventually identify herself as a boy would be catastrophic".
The defendants sought to dismiss the case and seek a defense of qualified immunity, but these were denied by the District Court for the District of South Carolina. In January 2015, the Court of Appeals for the Fourth Circuit reversed this decision and dismissed the complaint, stating that, "it did not "mean to diminish the severe harm that M.C. claims to have suffered" but that a reasonable official in 2006 did not have fair warning from then-existing precedent that performing sex assignment surgery on sixteen-month-old M.C. violated a clearly established constitutional right." The Court did not rule on whether or not the surgery violated M.C.'s constitutional rights. State suits were subsequently filed.
In July 2017, it was reported that the case had been settled out of court by the Medical University of South Carolina for $440,000. The University denied negligence, but agreed to a "compromise" settlement to avoid "costs of litigation."
In May 2016, the United States Department of Health and Human Services issued a statement explaining Section 1557 of the Affordable Care Act stating that the Act prohibits "discrimination on the basis of intersex traits or atypical sex characteristics" in publicly-funded healthcare, as part of a prohibition of discrimination "on the basis of sex".
In 2017, interACT submitted an amicus curiae in the matter of Gavin Grimm (G.G. v. Gloucester County School Board) regarding protections in education for issues of gender identity under Title IX. The submission stated that the Gloucester County School Board held a "simplistic view of "physiological" sex [that] is demonstrably inaccurate as a matter of human biology. Moreover, it demeans many thousands of intersex youth by erasing their bodies and lives and placing them outside the recognition of the law".
On Intersex Awareness Day (October 26) 2015, Lambda Legal filed a federal discrimination lawsuit against the United States Department of State for denying non-binary intersex navy veteran, Dana Zzyym, Associate Director of Intersex Campaign for Equality, a passport. On November 22, 2016, the District Court for the District of Colorado ruled in favor of Zzyym, stating that the State Department violated federal law. The ruling stated that the court found "no evidence that the Department followed a rational decision-making process in deciding to implement its binary-only gender passport policy," and ordered the U.S. Passport Agency to reconsider its earlier decision.
On September 26, 2016, California resident Sara Kelly Keenan became described as the second person in the United States to legally change her gender to non-binary. Keenan, who uses she/her pronouns, identifies as intersex "both as my medical reality and as my gender identification ... It never occurred to me that this was an option, because I thought the gender change laws were strictly for transgender people. I decided to try and use the same framework to have a third gender." In December 2016, Keenan received a birth certificate with an 'Intersex' sex marker from New York City, the first birth certificate issued using this term in the United States. Keenan had applied for a "non-binary" birth certificate but the City Department of Health and Mental Hygiene required a biological term.
Press coverage in December 2016 also disclosed that Ohio issued a birth certificate with a sex marker of 'hermaphrodite' in 2012. Ohio issues birth certificates based on "an historical record of the facts as they existed at the time of birth" and the individual was able to demonstrate a diagnosis of true hermaphrodite. Birth certificates are also known to have no sex specified.
Robert Sparrow has stated that the genetic elimination of intersex traits might be permissible, despite "uncomfortable" implications for "other nonpathological human variations" that do not affect physical health. In response, Georgiann Davis argues that such discrimination fails to recognize that many people with intersex traits led full and happy lives, and that the "intersex community is only "invisible" to those who choose to ignore it", while "the medical profession, not the intersex trait itself, is a major source of the social and psychological harm that perpetuates intersex stigmatization and the "hostile social environment" that individuals with intersex traits encounter". Jason Behrmann and Vardit Ravitsky state that: "Parental choice against intersex may ... conceal biases against same-sex attractedness and gender nonconformity."
Notable advocates include Eden Atwood, Max Beck, Cheryl Chase, Cary Gabriel Costello, Georgiann Davis, Tiger Devore, Alice Dreger, Pidgeon Pagonis, Anne Tamar-Mattis, Hida Viloria, Sean Saifa Wall and Kimberly Zieselman.
Personal testimonies are detailed in the San Francisco Human Rights Commission report, and also in a 2015 issue of Narrative Inquiry in Bioethics, and a Lambda Literary Award winning book, Intersex (For Lack of a Better Word), by Thea Hillman. Movies include the short, award-winning film XXXY (2000). In 2017, Hatchette Book Group published a memoir, Born Both, by Hida Viloria.
|archive-date=(help).CS1 maint: Uses editors parameter (link)
|" What It’s Like To Be Intersex", Lizz Warner, BuzzFeed|
Accord Alliance was founded in March 2008 to support a dialogue on intersex patients and their care. They are a hosted project of the Tides Center, an organization that supports non-profit groups. Their stated mission is to promote comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by disorders of sex development (DSD, which includes some conditions referred to as "intersex"). DSD is a term contested by some activists. Cheryl Chase, founder of the Intersex Society of North America, was a founding member on the advisory board.Alice Dreger
Alice Domurat Dreger () is a historian, bioethicist, author, and former professor of clinical medical humanities and bioethics at the Feinberg School of Medicine, Northwestern University in Chicago, Illinois.Dreger engages in academic work and activism in support of individuals born with atypical sex characteristics (intersex or disorders of sex development) and individuals born as conjoined twins. She challenges the perception that those with physical differences are somehow "broken" and need to be "fixed". She has opposed the use of "corrective" surgery on babies whose genitalia are considered "ambiguous". She has criticized the failure to follow such patients in later life, and reported longer-term medical and psychological difficulties experienced by some of the people whose sex is arbitrarily assigned.She supported J. Michael Bailey in the face of controversy over his book The Man Who Would Be Queen (2003). Bailey has been accused of transphobia by promoting psychologist Ray Blanchard's taxonomy of trans women. In an article in 2008 and in her 2015 book Galileo's Middle Finger, Dreger argued that the controversy had gone far beyond addressing the scientific theories presented in Bailey's book to become an attack upon the author, creating an out-of-control spiral of identity politics.Dreger has been a featured speaker at TED Talks. She has also worked as a journalist, founding East Lansing Info, a website that covers local affairs in East Lansing, Michigan.Anne Tamar-Mattis
Anne Tamar-Mattis is an American attorney, human rights advocate, and founder of interACT (formerly Advocates for Informed Choice). She currently serves as interACT's Legal Director.Cary Gabriel Costello
Cary Gabriel Costello is an intersex trans male professor and advocate for transgender and intersex rights. His areas of study include identity, sexuality, privilege, and marginalization.Cheryl Chase (activist)
Bo Laurent, better known by her pseudonym Cheryl Chase (born August 14, 1956), is an American intersex activist and the founder of the Intersex Society of North America. She began using the names Bo Laurent and Cheryl Chase simultaneously in the 1990s and changed her name legally from Bonnie Sullivan to Bo Laurent in 1995.Eden Atwood
Eden Atwood is an American jazz singer and actress. She is the daughter of composer Hubbard Atwood and the granddaughter of the novelist A. B. Guthrie Jr.Esther Morris Leidolf
Esther Morris Leidolf is a medical sociologist, an intersex activist, US-based writer, the founder of the MRKH Organization, and was the board secretary for the Intersex Society of North America.Fixing Sex
Fixing Sex: Intersex, Medical Authority, and Lived Experience, a book by Stanford anthropologist and bioethicist Katrina Karkazis, was published in 2008. Described as "thoughtful", "meticulous", and an "authoritative treatise on intersex", the book examines the perspectives of intersex people, their families, and clinicians to offer compassionate look at the treatment of people born with atypical sex characteristics.Galileo's Middle Finger
Galileo's Middle Finger is a 2015 book about the ethics of medical research by Alice Dreger, an American bioethicist and author. Dreger explores the relationship between science and social justice by discussing a number of scientific controversies. These include the debates surrounding intersex genital surgery, autogynephilia, and anthropologist Napoleon Chagnon's work.Georgiann Davis
Georgiann Davis is an assistant professor of sociology at University of Nevada, Las Vegas and author of the book Contesting Intersex: The Dubious Diagnosis. Davis formerly held a similar position at Southern Illinois University Edwardsville. Born with Androgen Insensitivity Syndrome, she writes widely on intersex issues and the sociology of diagnosis.Hida Viloria
Hida Viloria (born May 29, 1968) is a Latinx American writer, author of Born Both: An Intersex Life (Hachette Books), and intersex and non-binary rights activist of Colombian and Venezuelan descent. Viloria is Founding Director of the Intersex Campaign for Equality.InterACT
Advocates for Informed Choice, dba interACT or interACT Advocates for Intersex Youth, is a 501(c)(3) nonprofit organization using innovative strategies to advocate for the legal and human rights of children born with intersex traits. The organization was founded in 2006 and formally incorporated on April 12, 2010.Intersex Society of North America
The Intersex Society of North America (ISNA) was a non-profit advocacy group founded in 1993 by Cheryl Chase to end shame, secrecy, and unwanted genital surgeries. Other notable members included Morgan Holmes, Max Beck, Howard Devore, Esther Morris Leidolf and Alice Dreger. The organization closed in June 2008, and has been succeeded by a number of health, civil and human rights organizations.Kimberly Zieselman
Kimberly Zieselman is an attorney, human rights advocate, and intersex woman, with androgen insensitivity syndrome. She currently serves as executive director of interACT (formerly Advocates for Informed Choice), and is a signatory of the Yogyakarta Principles plus 10.Max Beck
Max Beck (1966 - January 12, 2008) was an American intersex advocate, active in the now-defunct Intersex Society of North America (ISNA). Max participated in the first known public demonstration against human rights violations on intersex people, which took place in Boston on October 26, 1996. The event is now commemorated by Intersex Awareness Day.Pidgeon Pagonis
Pidgeon Pagonis (born 1986) is an intersex American activist, writer, artist, and consultant. They are an advocate for intersex human rights and against nonconsensual intersex medical interventions.Sean Saifa Wall
Sean Saifa Wall is a black intersex man, advocate for intersex rights and former president of Interact Advocates for Intersex Youth. He is widely published, and works in intersex and HIV advocacy, and social documentary.Tiger Devore
Tiger Devore, previously known as Howard Devore and Tiger Howard Devore, is a clinical psychologist, sex therapist, and spokesperson on intersex issues. He is a former member of the now defunct Intersex Society of North America. The historian Alice Dreger credits him with starting the work of the intersex movement.Vernon Rosario
Vernon A. Rosario II (born 1962) is an American psychiatrist and medical historian who studies human sexuality. His recent work has focused on transgender and intersex youth, and he has served as chair of the medical advisory board for Intersex Society of North America.
|Human rights and legal issues|
|Medicine and biology|
|Society and culture|
|History and events|
|Rights by country|