PDF Brief Guidelines for Intersex Allies

By Claudia Astorino and Hida Viloria

To See Original and to Print: PDF File

Intersex Basics

What is intersex?

Intersex people are born with a mix of anatomical sex traits (chromosomes, genitals, and/or reproductive organs) that do not fit typical definitions of male or female. Many forms of intersex exist; it is not a single category. Please see OII USA’s website for a comprehensive list:http://oii-usa.org/1124/intersex-variations-list/

How many intersex individuals are there?

The most thorough existing research found intersex births to constitute 1.9% of the population*, making intersex individuals potentially as common as red-haired individuals (1-2% of the human population). However, given that only some intersex clinical patients’ records are used as data, and some individuals that might be classified as intersex do not self-identify as intersex, the figure is likely to be substantially higher. * Fausto-Sterling, Anne (2000). Sexing the Body: Gender Politics and the Construction of Sexuality. New York: Basic Books. ISBN 0-465-07713-7.

Do intersex individuals need “treatment” by clinicians? Are they sick?

There are very few instances when a child’s intersex variation poses health risks that require immediate medical attention. Rather, intersex people, like all people, sometimes have health issues. For example, being a female is not in and of itself a health problem, but there are health problems specific to being “female,” such as breast and ovarian cancer.

Does intersex have something to do with gender, sexual orientation, or sexual behavior?

Intersex is a biological reality, but it gets confused with gender, sexual orientation, and behavior because there is a socio-cultural relationship between one’s body and all of these things. However, intersex is not about gender identity: intersex people experience the same range of gender identities as non-intersex people. Intersex status is also not about sexual orientation: an intersex person may be heterosexual, homosexual, bisexual or queer.

Why are intersex individuals subjected to medical treatment?

Since intersex bodies cannot be easily categorized into one sex or another, the assumptions about how they’ll identify, express themselves, and who they’ll be attracted to, cannot be easily made, and the discomfort this gives some people drives recommendations for medically unnecessary treatment. However, on February 1st, 2013, the United Nations condemned these practices because evidence has shown that medically unnecessary “normalizing” procedures, such as irreversible genital surgeries, may be physically and psychologically harmful, and infants and young individuals cannot consent to them (info at oii-usa.org). Even adolescents have reported feeling pressured, as late as high school, by their parents’ and/or doctors’ recommendations, and often regret having succumbed to them.


Do all intersex individuals identify as either male or female?

It depends on the individual: some intersex individuals identify as male, female, men, women, intersex, intersex males, intersex females, intersex women, intersex men, or as none of these.

Are intersex individuals hermaphrodites?

Biologically speaking, hermaphrodites are beings (e.g., some fish) with both fully functioning sets of “male” and “female” sex organs, and this is impossible in humans. The word was originally used because of the cultural idea – originating from the Greek myth of Hermaphroditus, who was both male and female – of having elements of both sexes. While some intersex people self-identify as hermaphrodites under this conceptual definition, it is considered stigmatizing by some and should only be used by intersex people themselves.

What is DSD? Is this the same as intersex?

In 2006, the medical community replaced the term intersex with “disorders of sexual development” (DSD). DSD is problematic because it reinforces the idea that intersex is a medical condition in need of correction. Using DSD, individuals that identify as intersex have no choice but to identify as “disordered,” even though our natural bodies are most often healthy. Today, some intersex people, especially those taught DSD by their parents and/or doctors since the term’s inception, use the label. We respect these individuals’ choice to do so, just as we respect that individuals attracted to the same sex may not identify as gay or lesbian, but instead view their sexual orientation as a psychological disorder. However, using stigmatizing labels does not help attain civil rights. Thus, Organisation Intersex International (OII), the world’s largest intersex advocacy organization, recommends using “intersex” for promoting equality for those born with atypical sex anatomy.

What are intersex activists’ goals?

Intersex activists’ want to attain equal rights for intersex people by raising awareness that: 1) intersex is a naturally occurring variation; 2) intersex individuals and medical studies report that nonconsensual medically unnecessary genital surgeries, as well as hormone treatments, are often harmful; and, 3) intersex individuals must be able to choose what is done to their bodies (excluding any situations where there are medical health risks involved).

Does the existence of intersex individuals invalidate the gender binary?

While some intersex individuals may agree that sex and gender are not binary concepts, the goals of intersex activists are to raise awareness and to gain the right to consent to what is and is not done to our bodies. Intersex activists are not explicitly trying to bring down the binary.

Are intersex individuals part of the queer community?

Like all people, some intersex individuals are LGBTQ and others are not. However, OII supports adding the “I” to acronym since LGBT activism has fought for rights of people who fall outside expected binary sex and gender norms – which is in line with the goals of intersex activism and the reasons for discrimination against us. As trans* inclusion demonstrates, regardless of sexual orientation, everyone benefits from an alliance that challenges and promotes an end to the particular discrimination one faces. In addition, just as Latinos, for example, are not required to, and do not always, identify as “people of color,” despite their inclusion in the umbrella term, intersex people do not have to identify as “LGBTQI.”


How to Be a Good Intersex Ally

How can I raise awareness about intersex, even if I’m not intersex?

1) Start conversations about intersex, based on the Intersex Basics in these guidelines. Remember that most Intersex individuals prioritize discussing how to combat human rights abuses rather than being used as examples to explore concepts in sex and gender theory.

2) Be Intersex-inclusive = LGBTI or LGBTQIA
• Use the LGBTI or LGBTQIA acronyms, which include the “I” for intersex, whenever

possible in your speech, writing, and/or at your university or organization.

3) Make intersex more visible on social networking sites.

  • “Like” an intersex organization on Facebook, such as OII USA
  • Share an article, blog post, book, documentary, movie, YouTube clip, or presentations about intersex with others
  • Spread information using other resources, such as Tumblr, blogs, etc.4) Learn about intersex from intersex people; information & updates are available at oii-usa.org.
  • Intersex people are the ones best qualified to relay our experiences and needs
  • Contact an intersex educator about speaking at your organization, university, or workplace. (OII USA has available speakers, contact us through our website.)
  • If unable to meet intersex people, view documentaries, interviews, etc. which feature intersex people telling their own story.5) When speaking to intersex individuals:
  • Remember that being intersex may or may not be a part of their identity
  • Do not assume that it is their duty to discuss intersex at any time, or that they will be comfortable discussing all aspects: ask if it’s okay first
  • Phrase questions to understand intersex broadly, not in ways that are too personal and thus invasiveo e.g., You meet someone who has never heard of underwear before. “What kinds of underwear do people wear?” helps them broadly understand what underwear is. “What color underwear are you wearing right now?” does not help them broadly understand underwear, and may make the askee uncomfortable.
  • Ensure questions do not serve to fetishize, stigmatize, or freakify intersex individuals
  • If intersex individuals are not comfortable discussing certain topics:

o They may wish to have this conversation another time
o They may wish to have this conversation, but not publicly
o They may wish to have a conversation about intersex broadly, not personally.  They may wish to have this conversation but aren’t knowledgeable about all

intersex issues and might point you toward good resources
o They may not wish to have this conversation, it may be too personal or triggering

6) Do not make the assumption that intersex is a medical condition.
• Some intersex individuals don’t use the words “condition,” “syndrome,” etc. when

discussing their form of intersex.
o e.g., Claudia’s form of intersex is CAIS. Medical sources indicate that this stands

for Complete Androgen Insensitivity Syndrome, but to Claudia, it simply stands for Complete Androgen Insensitivity. Claudia feels her body is healthy and doesn’t relate to the word “syndrome” in association with her body.

Many intersex individuals use the term “intersex variations,” which doesn’t inherently medicalize intersex bodies.

Some Resources to Get Started

An extensive list of intersex organizations, info & updates, is available on OII-USA’s website.http://oii-usa.org; http://facebook.com/oiiusa

Full Frontal Activism: Intersex and Awesome – http://fullfrontalactivism.blogspot.com/Intersex and Out – http://intersexandout.tumblr.com/; http://www.hidaviloria.com
Intersex Roadshow – http://intersexroadshow.blogspot.com/

Fixing Sex: Intersex, Medical Authority, and Lived Experience, by Katrina KarkazisBodies in Doubt: An American History of Intersex, by Elizabeth Reis
Sexing The Body: Gender Politics and the Construction of Sexuality, by Anne Fausto- Sterling
Intersex and Identity: The Contested Self, by Sharon E. Preves

Intersexion (2012), Orchids: My Intersex Adventure (2011), One in 2000 (2006)

XXY (2007)

© 2012. OII USA. Claudia Astorino and Hida Viloria

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