Definition and understanding of Intersex
The term “intersex” refers to a variety of conditions in which a person is born with sex characteristics that do not fit neatly into typical definitions of male or female. These characteristics can involve the genitals, gonads, chromosomes, hormone levels, and other secondary sex characteristics. Being intersex is not a disease, but a natural variation of the human body. However, intersex people often face significant challenges, both medically and socially. This article will explore what it means to be intersex, the various conditions that fall under the term, the medical implications, and the psychological and sociocultural impact of growing up and living as an intersex person.
What does it mean to be intersex?
The term “intersex” is an umbrella term that covers a wide range of conditions in which a person is born with sex characteristics that do not fit into typical binary notions of male and female. These variations can occur in the genitals, gonads (testicles or ovaries), chromosomes, or internal structures such as the uterus and fallopian tubes. It is estimated that about 1-2% of the global population is born with intersex characteristics, making it a relatively common condition. However, public awareness and understanding of intersex is limited, often due to lack of education and persistent social stigma.
Terminology and distinguishing from other concepts
It is important to distinguish intersex from other terms such as “transgender” and “non-binary.” Intersex people are born with variations in their physical sex characteristics, while transgender people have a gender identity that differs from the sex they were assigned at birth. Non-binary people, on the other hand, do not identify exclusively as male or female. These concepts, while distinct, may overlap in some cases, but should not be confused with each other.
Medical conditions associated with intersex
Chromosomal Variations
Intersex conditions can result from chromosomal variations. Humans normally have 46 chromosomes, including two sex chromosomes (XX for females, XY for males). Some chromosomal variations include:
- Klinefelter syndrome (XXY): In this condition, males are born with an extra X chromosome. It can lead to characteristics such as small testes, reduced testosterone production, and infertility.
- Turner Syndrome (XO): This condition occurs in females who have only one X chromosome instead of two. Characteristics include short stature, nonfunctional gonads, and problems with pubertal development.
- Mosaicism and Chimerism: Some people may have a mosaic of cells with different sex chromosome configurations, such as a mix of XX and XY cells. This can lead to ambiguous genitalia and other intersex characteristics.
Genital variations
Some people are born with genitals that do not conform to typical definitions of male or female. These may include:
- Congenital adrenal hyperplasia (CAH): A genetic condition that can cause the female genitals to become virilized, resulting in females with male genital characteristics.
- Androgen insensitivity syndrome (AIS): In people with complete AIS, the external genitals appear female, but the body does not respond to androgens (male hormones), and typical male characteristics do not develop.
- True hermaphroditism: An obsolete term that refers to people born with ovarian and testicular tissue, who may have a combination of male and female genital characteristics.
Gonadal variations
Gonadal variations refer to conditions in which the gonads (testicles or ovaries) do not develop as expected. Some conditions include:
- Gonadal dysgenesis: The gonads do not develop properly, which can lead to ambiguous genitalia and problems with sexual development.
- Undifferentiated gonads: Some people may be born with gonads that do not fully develop into either testes or ovaries, causing ambiguous genitalia or other sexual variations.
Medical implications and treatments
Medical decisions and surgical procedures
Historically, many intersex children have undergone surgeries during childhood to “normalize” their genitals and make them conform to binary gender norms. However, these practices are increasingly criticized for being medically unnecessary and violating human rights. Many intersex adults report negative physical and psychological consequences from nonconsensual surgeries. There is an ongoing debate in the medical community about the best time for any surgeries. Some experts argue that it is best to wait until the intersex person is old enough to give informed consent. Some intersex people may receive hormone treatments to induce puberty or maintain secondary sex characteristics. However, these treatments should also be carefully evaluated and with the consent of the person involved.
Psychological support
Intersex people can face significant psychological and social challenges. Providing adequate psychological support is essential, which may include:
- Individual Counseling: To address issues related to gender identity, social stigma, and possible trauma resulting from non-consensual medical interventions.
- Family Support: Educating and supporting families of intersex people is crucial to creating a safe and welcoming environment.
- Support Groups: Participating in intersex support groups can provide a sense of community and help overcome isolation.
Socio-cultural issues
Stigma and Discrimination
Intersex people often face stigma and discrimination because of their condition. Lack of understanding and acceptance in society can lead to isolation, exclusion, and human rights violations. Lack of representation and awareness about intersex contributes to the perpetuation of discrimination. Many intersex people grow up without the language or context to understand their experience. Non-consensual medical practices, lack of legal protections, and discrimination based on sex characteristics are human rights violations that many intersex people face.
Impact of and on public opinion
In recent decades, the intersex rights movement has grown globally, aiming to promote awareness, human rights, and respect for intersex people. Many intersex organizations are calling for an end to unnecessary surgeries on infants and children, instead promoting a self-determination approach. Some countries have begun to legally recognize the existence of intersex people, offering non-binary gender options on official documents and legal protections against discrimination. Widespread education and increased public awareness are key to overcoming the stigma associated with intersex and promoting a more inclusive society. Including information about intersex in school curricula can help normalize sexual diversity and reduce bullying and discrimination. Public campaigns and the media can play a crucial role in raising public awareness of intersex issues and promoting respect for the rights of intersex people.
Summary
Being intersex means having a natural variation of sex characteristics that does not fit into typical binary definitions of male and female. Although intersex people face significant challenges, both medically and socio-culturally, it is essential to recognize and respect their existence and rights. Promoting greater awareness, education, and legal support are key to creating a more inclusive and respectful society for intersex people. With a continued commitment to inclusion and understanding, it is possible to build a world where intersex people are free to live openly and without fear of discrimination.
- Edited by Dr. Gianfrancesco Cormaci, PhD, specialist in Clinical Biochemistry.
Scientific references
Zieselman K. (2020). XOXY: A Memoir. Jessica Kingsley Publishers.
Roen, K. (2019). Intersex Embodiment: Medicalization, Self and Gendered Bodies. Journal of Gender Studies, 28(1), 1-14.
Human Rights Watch. (2017). “I Want to Be Like Nature Made Me”: Medically Unnecessary Surgeries on Intersex Children in the US. Human Rights Watch.
ISNA (Intersex Society of North America). (2006). What is Intersex? Intersex Society of North America.
Carpenter M. (2016). Reproductive Health Matters, 24(47), 74-84.
Council of Europe. (2015). Human Rights and Intersex People. Council of Europe Commissioner for Human Rights.
UN Office of the High Commissioner for Human Rights (OHCHR). (2015). Free & Equal Campaign: Fact Sheet on Intersex. United Nations.
Karkazis K. (2008). Fixing Sex: Intersex, Medical Authority, and Lived Experience. Duke University Press.
Fausto-Sterling, A. (2000). Sexing the Body: Gender Politics and the Construction of Sexuality. Basic Books.