Caitlin Petrakis Childs

The following are the basic definitions and resource lists I use when I do intersex presentations. I have found them to be quite helpful. If you have any suggestions for further resources or comments on the definitions, please comment below or contact me directly: caitlinpetrakischilds (at) gmail.com

Basic Definitions:

Please note that much of the language used here is inadequate but is the best one is able to do with language that is as socially constructed as sex and gender are. I thought it would be less confusing to not put everything in quotation marks.

Some of these definitions come from the Intersex Society of North America, MRKH Organization, Anne Fausto-Serling’s book ‘Sexing the Body: Gender Politics and the Construction on Sexuality’, and Suzanne J. Kessler’s book ‘Lessons from the Intersexed’.

Intersex – Simply put, intersex is a set of medical conditions that feature “congenital anomaly of the reproductive and sexual system.” That is, intersex people are born with “sex chromosomes,” external genitalia, and/or internal reproductive systems that are not considered “standard” for either male or female.

Sex – Sex is a category we are all put into at birth. This assignment is biologically based (taking into account chromosomes, genital appearance, internal reproductive organs, and hormones) but strongly influenced by societal and cultural views. Everyone is expected to fall into one of two categories—male (XY, testes, penis) or female (XX, ovaries, uterus, vagina). Often, babies are born who don’t fall neatly into these categories. They are intersexed. In our culture, intersex babies are *always* assigned either male or female, even though they may not physically fit into these categories.

Gender – Another category we are put into at birth, which is supposed to “match” our sex. Gender is made up of several things. Gender identity—one’s sense of self as belonging to a particular gender (typically man or woman). Gender attribution—the gender others in the social world perceive you as being (woman or man). And gender role—cultural expectations of behavior as appropriate for a woman or man. Society does not make a place for those of us who fall outside the two allowed genders, either physically, psychologically or behaviorally.

Hermaphrodite – The word “hermaphrodite” is a stigmatizing and misleading word. There is growing momentum to eliminate the word “hermaphrodite” from medical literature and the use the word “intersex” in its place. While some intersex people do reclaim the word “hermaphrodite” with pride to reference themselves (like words such as “dyke” and “queer” have been reclaimed by LGBT people), it should be generally avoided except under specific circumstances.

Victorian doctors believed that the gonads were the seat of “true sex,” and thus created a system of nomenclature — in the absence of any knowledge of genetics, endocrinology, or embryology — which categorized people as “male pseudohermaphrodite,” “female pseudohermaphrodite,” or “true hermaphrodite.” It’s time to eliminate this quaint Victorianism from modern medical practice.

The word “hermaphrodite” implies that a person is born with two sets of genitals — one male and one female — and this is something that cannot occur.

The qualifiers “male” and “female,” because they are based only upon the gonadal histology, frequently contradict the sex of assignment, and thus are very misleading and disturbing for parents and patients.

The qualifiers “pseudo” and “true” are even more harmful, because they imply a sort of authenticity, or lack of same, that carry powerful emotional baggage.

Intersex Genital Mutilation – Surgery performed on intersex people without their consent so that they will fit societal norms. When an infant is born with “ambiguous genitalia,” doctors almost always surgically “correct” them within the first year, but sometimes within days. With intersex conditions discovered later in life, surgery or other non-surgical treatment is usually pushed on patients as the only option.

Disorder of Sex Development (DSD) – This is a term the Intersex of North America and other intersex activists have begun to use, specifically in medical contexts, in place of the word intersex. DSD has been met with much controversy and debate. This FAQ compiled by intersex activist Emi Koyama does a pretty good job of covering the various sides of the arguments surrounding DSD. I have also found this report compiled by OII founder Curtis E. Hinkle to be helpful in covering the objections and concerns raised by intersex people around the shift to DSD. I personally do not like the language of DSD and agree with the concerns raised by many intersex people about the way the decision to use it was made, and the implications of both the language and the protocol associated with it. Therefore, I continue to self-identify with and use the term intersex.

Intersex Conditions:

(Please note that these are only a few of the many intersex conditions out there)

Androgen Insensitivity Syndrome (AIS) – Androgen Insensitivity Syndrome, or AIS, is a genetic condition occurring in approximately 1 in 20,000 individuals. With AIS, XY children are born with highly feminized genitalia. The body is “blind” to the presence of testosterone, since cells cannot capture it and use it to move development in a male direction. At puberty these children develop breasts and a feminine body type.

Congenital Adrenal Hyperplasia (CAH) – Congenital adrenal hyperplasia is the most prevalent cause of intersex amongst XX people with a frequency of about 1 in 20,000 births. CAH results from an enzyme “deficiency” and can cause mild to severe masculinization of genitalia at birth or later, if untreated, can cause masculinization at puberty and early puberty. Some forms drastically disrupt salt metabolism and can be life-threatening if not treated with salt cortisone.

Klinefelter Syndrome – Most males inherit a single X chromosome from their mother, and a single Y chromosome from their father. People with klinefelter syndrome inherit an extra X chromosomes from either father or mother; their karyotype is 47 XXY. Klinefelter is quite common, occurring in 1/500 to 1/1,000 male-assigned births. Klinefelter is a form of gonadal dysgenesis causing infertility; after puberty there is often breast enlargement; treatments include testosterone therapy.

Hypospadias – In Hypospadias, the urethra does not run to the tip of the penis. In mild forms, the opening is just shy of the tip; in moderate forms it is along the shaft; in severe forms, it may open at the base of the penis. It is caused by a variety of things, including alterations in testosterone metabolism.

Mayer-Rokitansky-Kuster-Hauser Syndrome (MRKH) – Mayer-Rokitansky-Kuster-Hauser Syndrome (MRKH) is a condition that involves the congenital absence of the vagina, fallopian tubes, cervix, and uterus. Some people with MRKH have uterine remnants or horns. External genitalia are “normal female”. Chromosome karyotype is 46XX (“normal” female). The incidence rate is approximately one in 5,000. Other symptoms can include kidney abnormalities, skeletal problems, and hearing loss. The cause is still unclear, but the syndrome occurs sometime during the 4th-6th week of pregnancy.

Resources

The following is a list of organizations, websites, and books with more information on intersex conditions and activism. These are good starting points for learning more. You can also contact Caitlin Childs at caitlinpetrakischilds (at) gmail.com for more information or to schedule a workshop.

Websites and Organizations: (Many of these organizations have extensive links to similar web pages and groups)

Intersex Collective Intersex Collective is a web resource for anyone seeking experienced intersex speakers, resources and organizations. Caitlin is a member of their speakers bureau.

Bodies Like Ours Hopes to positively change the way intersex people think about themselves and the way society and the medical community view them. Currently this page is only hosting message boards, but is a good way to connect with other intersex people and parents of intersex children. Caitlin has served on the Board of Directors of Bodies Like Ours in the past.

The Intersex Society of North America (ISNA) The Intersex Society of North America is devoted to systemic change to end shame, secrecy and unwanted genital surgeries for people born with atypical reproductive anatomies. Much of ISNA’s current work is focused on working with med school students and those in the medical profession who are working with intersex patients and their parents. An excellent starting place for information on all things intersex. ISNA closed their doors in 2008, but their website remains as a historical document and resource.

MRKH Organization The MRKH Organization focuses on a patient centered approach on MRKH. An excellent resource on MRKH. The author of ‘the Missing Vagina Monologue’ runs this site.

The Survivor Project Survivor Project is a non-profit organization dedicated to addressing the needs of intersex and trans survivors of domestic and sexual violence through caring action, education and expanding access to resources and to opportunities for action.

Organisation Intersex International The mission of OII is to: Campaign in favour of human rights for the intersexed. Encourage an exchange of ideas and different perspectives about intersex from various groups and geographical regions. Provide information concerning actual life experiences of people with intersex variations to medical personnel working with infants with atypical sex anatomy, to psychological experts, sexologists, sociologists and specialists in feminism. To assist families and friends of intersexed individuals to understand intersexuality and to cope with the specific problems related to the role as a support person.

Intersex Initiative of Portland Intersex Initiative Portland (ipdx) is a network of intersex activists and allies working to stop the medical abuse of intersex children, and to challenge medical and social erasure of intersex existence through raising the awareness of issues faced by intersex people. They work both locally (Portland, Oregon) and nationally.

San Francisco Human Rights Commission Report A groundbreaking report was issued in May 2005 on the “normalization” of intersex people. This report was based on the testimonies of intersex people and their families to the San Francisco Human Rights Commission. You can download the entire report or read the summary here

Books:

Click on any of the book titles below to purchase online from Charis Books and More and get 10% off!

Intersex (for Lack of a Better Word) by: Thea Hillman

Intersex in the Age of Ethics Edited by: Alice Dreger

Hermaphrodites and the Medical Invention of Sex Written by: Alice Dreger

Lessons from the Intersexed Written by: Suzanne Kessler

Sexing the Body: Gender Politics and the Construction of Sexuality Written by: Anne Fausto-Sterling

Third Sex, Third Gender Edited by: Gilbert Herdt

As Nature Made Him: The Boy who was Raised as a Girl by John Colapinto *Please note that this book is not about intersex specifically, but gives a good history of John Money and others influential in the current “treatment” of intersex infants.*

Normal: Transsexual CEOs, Crossdressing Cops, and Hermaphrodites with Attitude by Amy Bloom

Intersex and Identity: The Contested Self by: Sharon E. Preves

Intersex by: Catherine Harper

Fims:

One in 2000 Directed by: Ajae Clearway For more info or to purchase contact Polyvinyl Pictures (Caitlin is one of the intersex activists featured in this film)

Hermaphrodites Speak! By: Cheryl Chase Available from ISNA

The Child with an Intersex Condition: Total Patient Care By: Cheryl Chase Available from ISNA

Yellow for Hermaphrodites: Mani’s Story Produced by: Greenstone Pictures and available through ISNA