questions 4 betsy &/or janet

[maria taylor]

hey janet and betsy
i am not clear on all the terms many of them use initials for example MRKH do you have an appendix with definitions of the terms concerning intersex? i was at the workshop in orlando last month and was able to give a report last nite at PFLAG in Jax we look 4ward 2 seeing you here in the fall and don't forget you have a place most sincerely maria taylor

[Betsy]

Maria,

Here is something that was put together by Caitlin Childs, who is one of our youth activists. We don't really differentiate amongst all the different types of intersex because there are so many good sites that already do that, most notably ISNA. Additionally, there are many condition specific sites out there that can answer detailed questions about their own questions since they are truly the experts. Basic appendices and a well-organized definitive reading list are still being built (volunteers??) but this help explain some of the basics.


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

Intersexuality - Simply put, intersexuality 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, or internal reproductive system 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, 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 male or female). Gender attribution—the gender others in the social world perceive you as being (female or male). And gender role—cultural expectations of behavior as appropriate for a female or male. 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 intersexed 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 sometime within days. With intersexuality discovered later in life, surgery or other non-surgical treatment is usually pushed on patients as the only option.

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 intersexuality 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 some form of 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.


Some of these definitions come from the Intersex Society of North America (www.isna.org), MRKH.org, 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’.

I hope this helps some.

Betsy

[maria taylor]

thanks so much, betsy
the explanations were very thorough i appreciated explanations of the victorian terminology as well it will take us a long time to change into more modern language be patient but keep working to make a difference
i will visit the site you referenced
thanks a million
maria taylor