What is intersex?
An estimated 1.7 percent of people are born with bodies that do not fit into the typical medical categories of either male or female. Intersex is a term that describes a range of variations to sex characteristics—such as chromosomes, genitalia, and hormones—that occur naturally. Some intersex traits become apparent at birth or during puberty, while others can only be determined through genetic testing.
Since intersex only means the sex characteristics a person is born with, people who are intersex can have any gender identity or sexual orientation. Being intersex does not mean a person is transgender, although some intersex people do transition from the sex they were assigned at birth.
Why is the term intersex preferred to “hermaphrodite” or “DSD”?
The word “hermaphrodite” comes from Greek mythology and was historically applied to some intersex people, especially if they were in medical settings. But many intersex people find the term insulting and an inaccurate description of intersex bodies. The word’s mythological origins also imply that intersex people are magical or very rare—but the truth is that people are born intersex about as often as they’re born with red hair.
Meanwhile, although care providers often use the label “disorders [or differences] of sex development” (DSD) to describe intersex traits, these terms refer to medical conditions—not actual human beings. Many intersex people argue that such labels suggest that healthy intersex bodies are somehow unhealthy or defective, which only contributes further to the stigma against them.
What are some of the challenges intersex people face?
Intersex people often experience prejudice and discrimination because their bodies do not conform to other people’s expectations about sex and gender. In some parts of the world, people who develop visible intersex traits face abandonment and violence, and some babies born with intersex characteristics are even murdered.
By treating intersex traits as birth defects or disorders, medical practice has spread the idea that intersex people need to be “fixed.” Many intersex people, including children too young to understand or consent, have been traumatized by their experiences in medical settings. Some have had their intersex status deliberately withheld from them by doctors and parents.
While medical standards are changing, many intersex people’s childhood experiences were so painful that they are still affected by feelings of fear and shame. They may be reluctant to seek health care, and those who do seek care may face barriers getting what they need due to health care providers’ ignorance of intersex issues.
Intersex people may also experience discrimination when they’re at school, work, or whenever people are segregated by sex or gender—such as, for example, when they’re playing sports. In many places, intersex people have difficulty obtaining legal identity documents that reflect their sex or gender identity, which makes them vulnerable to discrimination when traveling or undergoing security checks.
What are “normalizing” surgeries?
In the 1960s, doctors in the United States began to recommend that intersex babies and children undergo “normalizing” surgeries, which can range from removing gonads and internal sex organs to reshaping external genitalia to have a more typical male or female appearance. These surgeries are still common in many countries.
Parents of intersex children have reported being pressured by doctors and other authority figures to allow these surgeries. They are told that it is in the child’s best interests because they could be bullied or feel alone due to their bodies looking different. But the truth is that there are only two instances where surgery on a newborn’s genitalia is medically necessary: when the internal organs are on the outside of the body, and when there is no opening for urine to leave the body.
Why are these surgeries a violation of human rights?
Medically unnecessary surgeries can actually cause physical and psychological harm. Children too young to express their gender identity may be surgically assigned the wrong sex. Surgery to alter the size or appearance of genitals can cause scarring, incontinence, loss of sexual feeling, and emotional distress. Removing testes and ovaries results in involuntary sterilization and may require lifelong hormonal replacement therapy.
Surgery on children too young to consent is a violation of their right to control their own bodies. Intersex rights advocates want surgeries to be delayed until children are old enough to make their own decisions about what, if any, interventions they want. Many health care providers have also begun to speak out in favor of ending this practice.
The World Health Organization, Human Rights Watch, Amnesty International, the Council on Europe, and several United Nations human rights bodies have called for an end to these nonconsensual and medically unnecessary surgeries on infants and children. In 2015, Malta became the first country to ban these surgeries until children are old enough to consent.
What is intersex genital mutilation? Is it the same as female genital mutilation?
Intersex genital mutilation (IGM) is surgery carried out upon the genitals of intersex infants and children not for medical reasons, but for cultural and/or religious reasons—such as the belief that bodies should conform to typical notions of male or female. Not all medical interventions on intersex bodies are IGM, since those interventions may also include removal of gonads, hormone replacement therapy, and other kinds of treatment.
Female genital mutilation (FGM) includes all procedures that involve partial or total removal of the external female genitalia—or other injury to the female genital organs that were done for nonmedical reasons. Some surgeries on intersex children meet the legal definition of FGM, since common surgical practices include the reduction or total removal of the clitoris as well as removal of the labia. Laws prohibiting FGM often make an exception for surgery on intersex children, but intersex rights advocates are working to change that.
How do the Open Society Foundations support work on intersex rights?
The Open Society Foundations support a variety of groups and individuals to uphold intersex rights. We engage with activists from Africa, Europe, Asia, and the Americas, elevating intersex voices and supporting community-led advocacy initiatives:
- In the United States, interACT is helping intersex youth advocates speak out in the media and fight for an end to medically unnecessary surgeries.
- OII Europe has been the leading organization working on human rights advocacy, towards intersex visibility and intersex inclusion in the European LGBTI movement.
- Our animated video “Born Julia and Julius” features an activist from SIPD Uganda, an organization that advocates for intersex people in Uganda.
- The Intersex Human Rights Fund supports projects around the world that defend the human rights, bodily autonomy, and self-determination of intersex people.