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© 2003-2007 Intersex Initiative
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Intersex Initiative (IPDX) is a Portland, Oregon based national activist and advocacy organization for people born with intersex conditions. Director Emi Koyama has been an intern-turned-staffer at Intersex Society of North America before founding Intersex Initiative in January 2003.
Intersex (also known as DSD, or disorder of sex develpment) refers to a series of medical conditions in which a child's genetic sex (chromosomes) and phenotypic sex (genital appearance) do not match, or are somehow different from the "standard" male or female. About one in 2,000 babies are born visibly intersexed, while some others are detected later. The current medical protocol calls for the surgical "reconstruction" of these different but healthy bodies to make them "normal," but this practice has become increasingly controversial as adults who went through the treatment report being physically, emotionally, and sexually harmed by such procedures.
For more information about intersex, please see the articles section.
Researchers from Johns Hopkins University, the historical root of cosmetic genital surgeries for children with intersex conditions, now argue that vaginal reconstruction surgery is not needed for most girls born with complete androgen insensitivity syndrome. Research is done by Todd Purves, Jennifer Miles-Thomas, Claude Midgeon, and John Gearhart, and will be presented at the American Academy of Pediatrics this weekend.
The study compared 18 women who received genital surgeries with 11 who did not, and found that their rates of sexual activity were similar. "It is a common misconception in the general public--and quite often among doctors--that most girls born with this condition should have vaginal reconstruction in order to be sexually active," said Purves, as if his mentors at Johns Hopkins University weren't responsible for spreading such misconceptions. "Our findings show that, on the contrary, most young women choose not to have the surgery, have vaginal depths that are within normal parameters and can lead active sexual lives."
Posted by Emi on Oct 28, 2007
This is incredible. In India, the birth of an infant with an intersex condition is being celebrated as "an incarnation of Hindu gods Shiva and Parvati," according to New Post (07/26/2007). The baby is now over five months old, and hundreds of people are gathering to see her/him and to offer prayers. Plus, the baby seems to have an enlightened gynecologist and receiving good care...
I'm not suggesting that we, too, should start worshipping our intersex children as incarnations of gods (on the second thought...), but this news from India clearly shows that things could be different for intersex children in the U.S., who are often trapped in the cycle of secrecy and shame.
Posted by Emi on Jul 26, 2007
Word has that Oprah picked Jeffrey Eugenides' Pulitzer-winning novel, "Middlesex," as the latest addition to Oprah's Book Club. We've created a little FAQ about "Middlesex" for those googling for more information about intersex after reading the book. As always, email us if you have any feedback.
Posted by Emi on Jun 5, 2007
On May 16, 2007, a symposium on "growth attenuation" therapy for children with severe developmental disabilities was held at University of Seattle. The case involves a series of medical treatments in which in which a 6-year old girl with severe developmental disabilities had her growth hormonally stopped, hysterectomy performed, and also had breast buds removed, so that she will remain in childlike size and shape for the rest of her life. While the symposium is not specifically related to intersex, it raised many of the issues that are relevant to the ethics of intersex medical treatment, namely: degree to which parents can exercise medical decision-making powers on behalf of their children, legal and policy frameworks for protecting children's right to bodily integrity, the problem with the use of medical technologies as the solution to social issues, etc. You can read a full, detailed review of the symposium on Emi's blog.
Posted by Emi on May 17, 2007
Lately there has been a lot of discussions and debates over the introduction of the new medical terminology, "disorders of sex development" (DSD), and its relative merits and disadvantages over "intersex." We've drafted a "frequently asked questions" to understand various viewpoints in this debate, and need your feedback! Please read the draft, and let us know what you think!
Posted by Emi on May 3, 2007
According to Start Tribune (Twin Cities, Minnesota), a urologist at the University of Minnesota has been disciplined by the Minnesota Board of Medical Practice removing healthy ovaries from a 7 year old girl. Dr. Michael Wipf apparently mistook the girl's ovaries to be abnormal during "corrective surgery for her urinary problems," but had neglected to order biopsy to confirm his observation.
Posted by Emi on Nov 21, 2006
This past February, Intersex Initiative director Emi Koyama gave the keynote lecture at Translating Identity conference at University of Vermont. The lecture, titled "From Intersex to DSD: Toward a Queer Disability Politics of Gender," is about the recent introduction of the term DSD (disorders of sex development) to replace "intersex" within the medical community, and how Koyama has come to endorse it despite some concerns from other activists. We now have the full text of the lecture available here.
Posted by Emi on Apr 10, 2006
Parents of a 13-year old girl with Hodgkin's disease, a cancer that targets lynphatic tissues, is in a legal battle with the State of Texas over her treatment, according to the latest Associated Press story. The patient was diagnosed with the disease in January and has received chemotherapy, but the parents came to believe that continued radiation therapy, which was recommended by the doctors, would do more harm than good.
Posted by Emi on Oct 23, 2005
In the position paper published in the recent issue of Journal of Pediatric Endocrinology and Metabolism, intersex activists (Alice Dreger and Cheryl Chase) and expert physicians join together in calling for changing the taxonomy of intersex conditions. The current taxonomy, which divides intersex conditions to three categories ("female pseudohermaphroditism," "male pseudohermaphroditism," and "true hermaphroditism") was developed in the late 19th century, when doctors believed that one's gonads (testes or ovaries) determined her or his "true sex." That belief was abandoned in the 20th century in favour of John Money's controversial and later rejected theory that one can be raised as a boy or a girl regardless of the gonads. The gonad-based system from the Victorian era lost all of its usefulness at that point, but somehow it survived until now.
Posted by Emi on Oct 7, 2005
A new study published in BJOG: An International Journal of Obstetrics & Gynaecology confirms what many advocates have suspected: women who have complete or mosaic XY karyotype are often misdiagnosed. Intersex medicine experts from the Middlesex Clinic, Elizabeth Garrett Anderson Hospital of the University College London Hospitals collected data for forty-six adult XY women to assign best possible diagnoses, then compared them to the diagnoses these women had previously received elsewhere.
Posted by Emi on Sep 21, 2005
To read older news, see the list of all news.