Being Intersexed: Resources

Introduction

Many people do not know what intersex means because it was commonly referred to in the past as being a hermaphrodite. Being intersexed is very in the closet because of the general belief in American society that gender fits into a binary. Being intersexed proves that gender is complicated, sex is complicated, and identity is complicated (as are many more things that influence being intersexed and anything in general).

I am not intersexed, I am not an expert, but I wish to distribute information. This is what I have found, encountered, believe, etc. I can not be expert advice, but I can be a start.

I highly recommend visited the ISNA website, whose acronym I explain below. It is an excellent resource and has been advocating for intersex rights ever since Cheryl Chase helped create it.

What is Intersex?

““Intersex” is a general term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male. For example, a person might be born appearing to be female on the outside, but having mostly male-typical anatomy on the inside. Or a person may be born with genitals that seem to be in-between the usual male and female types—for example, a girl may be born with a noticeably large clitoris, or lacking a vaginal opening, or a boy may be born with a notably small penis, or with a scrotum that is divided so that it has formed more like labia. Or a person may be born with mosaic genetics, so that some of her cells have XX chromosomes and some of them have XY.

Though we speak of intersex as an inborn condition, intersex anatomy doesn’t always show up at birth. Sometimes a person isn’t found to have intersex anatomy until she or he reaches the age of puberty, or finds himself an infertile adult, or dies of old age and is autopsied. Some people live and die with intersex anatomy without anyone (including themselves) ever knowing.” (http://www.isna.org/faq/what_is_intersex)

To find out more about this, go to the ISNA’s website (which I will cover later in this post). They have a bunch of information, links, and recommendations.

What Intersex Condition do you have?

To find out what conditionmay fit to your genitalia, explore this website, but be sure to confirm with a clinician.

Intersex Conditions: http://www.isna.org/faq/conditions

How common is intersex?

“To answer this question in an uncontroversial way, you’d have to first get everyone to agree on what counts as intersex —and also to agree on what should count as strictly male or strictly female. That’s hard to do. How small does a penis have to be before it counts as intersex? Do you count “sex chromosome” anomalies as intersex if there’s no apparent external sexual ambiguity?1 (Alice Dreger explores this question in greater depth in her book Hermaphrodites and the Medical Invention of Sex.)

Here’s what we do know: If you ask experts at medical centers how often a child is born so noticeably atypical in terms of genitalia that a specialist in sex differentiation is called in, the number comes out to about 1 in 1500 to 1 in 2000 births. But a lot more people than that are born with subtler forms of sex anatomy variations, some of which won’t show up until later in life.

Below we provide a summary of statistics drawn from an article by Brown University researcher Anne Fausto-Sterling.2 The basis for that article was an extensive review of the medical literature from 1955 to 1998 aimed at producing numeric estimates for the frequency of sex variations. Note that the frequency of some of these conditions, such as congenital adrenal hyperplasia, differs for different populations. These statistics are approximations.

Not XX and not XY one in 1,666 births
Klinefelter (XXY) one in 1,000 births
Androgen insensitivity syndrome one in 13,000 births
Partial androgen insensitivity syndrome one in 130,000 births
Classical congenital adrenal hyperplasia one in 13,000 births
Late onset adrenal hyperplasia one in 66 individuals
Vaginal agenesis one in 6,000 births
Ovotestes one in 83,000 births
Idiopathic (no discernable medical cause) one in 110,000 births
Iatrogenic (caused by medical treatment, for instance progestin administered to pregnant mother) no estimate
5 alpha reductase deficiency no estimate
Mixed gonadal dysgenesis no estimate
Complete gonadal dysgenesis one in 150,000 births
Hypospadias (urethral opening in perineum or along penile shaft) one in 2,000 births
Hypospadias (urethral opening between corona and tip of glans penis) one in 770 births
Total number of people whose bodies differ from standard male or female one in 100 births
Total number of people receiving surgery to “normalize” genital appearance one or two in 1,000 births

1 Dreger, Alice Domurat. 1998. Ambiguous Sex—or Ambivalent Medicine? Ethical Issues in the Treatment of Intersexuality. Hastings Center Report, 28, 3: 24-35.

2 Blackless, Melanie, Anthony Charuvastra, Amanda Derryck, Anne Fausto-Sterling, Karl Lauzanne, and Ellen Lee. 2000. How sexually dimorphic are we? Review and synthesis. American Journal of Human Biology 12:151-166.

We were recently asked to update these frequency figures, and a lively discussion arose between two staff members.” (http://www.isna.org/faq/frequency)

The ISNA: Intersex Society of North America

The ISNA, as found on their website (by their mission statement) stand for:

“systemic change to end shame, secrecy, and unwanted genital surgeries for people born with an anatomy that someone decided is not standard for male or female.

We have learned from listening to individuals and families dealing with intersex that:

Click here to learn more about our agenda. With your help, we can make the world a safer place for families dealing with intersex conditions.” (http://www.isna.org/)

Doctors for the Intersexed

You can find this at this website: http://www.aissg.org/52_CLINICIANS.HTM

NOTE: This is only a start and from limited sources I found online and thus can be outdated. I would recommend getting in contact with someone from ISNA to talk about this or finding a support network in your area where you can feel safe in asking about a doctor who will provide you with safe service and make you feel comfortable.

What to do once you found out you are intersexed

Support groups:

http://www.isna.org/support

Find a doctor who can confirm hormonal/genetic difference: http://www.aissg.org/52_CLINICIANS.HTM

You may have a lot of questions, just discovered it yourself, and may feel overwhelmed. I do not recommend this website right away, but it is incredibly helpful and from what I have seen, considerate:

http://www.isna.org/faq

Excellent Resource: Sexing the Body by Anne-Fausto Sterling

Sexing the Body: Gender Politics and the Construction of Sexuality. By Anne Fausto-Sterling. New York: Basic Books, 2000, 473 pages.

Spanish Translation: Cuerpos sexuados. Editorial Melusina: Barcelona, Spain, 2006.

“Professor Fausto-Sterling’s most recent work, entitled Sexing the Body: Gender Politics and the Construction of Sexuality, was published by Basic Books in February 2000. It examines the social nature of biological knowledge about animal and human sexuality.

Sexing the Body received the Distinguished Publication Award in 2001 by the Association for Women in Psychology. In 2000 it was chosen as one of the Outstanding Academic Books of 2000 by CHOICE Magazine, Published by the American Library Association. It was also co-winner of the Robert K Merton Award of the American Sociological Association Section on Science, Knowledge and Technology.

From the back cover:

“Why do some people prefer heterosexual love while others fancy the same sex? Do women and men have different brains? Is sexual identity biologically determined or a product of social convention? In this brilliant and provocative book, the acclaimed author of Myths of Gender argues that the answers to these thorny questions lie as much in the realm of politics as they do in the world of science. Without pandering to the press or politics, Fausto-Sterling builds an entirely new framework for sexing the body-one that focuses solely on the individual.” (http://bms.brown.edu/faculty/f/afs/afs_publications_books.htm)

More books:

http://www.isna.org/books

Conclusion

I do not know much about the experience of being intersexed because I am not. I wish to increase the visibility of intersex while keeping people who identify as intersex safe. I hope that the gender binary begins to blur or that everyone can accept others differences. I hope this is a valuable resource and if you wish to hear more about this particular subject, feel free to contact me.

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5 Comments

Filed under Education, glbtq, Health, Queer, Sexuality

5 responses to “Being Intersexed: Resources

  1. I am writing on behalf of the Organisation Intersex International to request that you add a link to OII, the largest grassroots organisation in the world, on your website in the section for intersex resources. ISNA is now defunct.

    Our link is

    http://www.intersexualite.org

    Kind regards,
    Curtis E. Hinkle
    Founder, Organisation Intersex International
    http://www.intersexualite.org/

  2. i want to start an exclusive intersex dating site. I own the domain intersexsingles.com and intersexdating.com and would like to start a real dating site with them. Right now I just have affiliate ads on them. If anybody who reads this would like to help out contact me. Thanks

    • Jessica K.

      I’d like to know how you’d seperate the freaks who want to date a hermorphadite from pestering intersexuals? There’d need to be some kind of proof a person is intersexual as mailing in scans or images to prove themselves to protect intersexuals from being harassed, targets and otherwise.

  3. I follow your posts for a long time and must tell that your articles are always valuable to readers.

  4. Iam a female interested in a relationship with an intersexual female but can’t find a date site to meet anyone. Please help me I would like best of both worlds…

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