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© 2003-2008 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. It was founded by Emi Koyama, a multi-issue social justice activist and former intern at Intersex Society of North America (2001-02).
Intersex (also known within the medical community as DSD, or disorders 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" definition of male or female. About one in 2,000 babies are born visibly intersexed, while some others are detected later.
Traditionally, the medical protocol has called for the surgical "reconstruction" of these different but generally 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.
Southern Voice, the Atlanta-based newspaper for lesbian, gay, bisexual and trans community, has a story about Darlene Harris, an Atlanta police officer who just came out as intersex. Officer Harris is the Police liaison for the LGBT community, and she gave a presentation in which she discussed her experiences in front of approximately 20 people in a workshop.
Posted by Emi on Jul 4, 2008
As of this week, Intersex Society of North America has officially closed its doors. Founded in 1993, ISNA was the first North American organization to advocate for the rights of people born with intersex conditions, and for more honest, less invasive medical treatment of intersex children. ISNA's farewell message addressed to its friends and supporters can be found on www.isna.org.
The organization explains: "we finally have consensus on improvements to care for which we have advocated for so long, but we lack a consistent way to implement, monitor, and evaluate them. [...] Unfortunately, ISNA is considerably hamstrung in being able to fulfill this role. [...] there is concern among many healthcare professionals, parents, and mainstream healthcare system funders that ISNA's views are biased or that an association with ISNA will be frowned upon by colleagues and peers." In order to get away from this "baggage," so to speak, and to become regarded as professional, those involved in ISNA have chosen to form a different organization, the Accord Alliance.
Accord Alliance's mission states that the organization works to "promote comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by DSD [disorders of sex development] by fostering collaboration among all stakeholders." There is a concern, however, how much voice intersex adults will have in this "collaboration," as the new organization focuses on working with healthcare providers and parents, especially with the almost complete disappearance of the word "intersex" from its website.
We are still evaluating how ISNA's closure will affect us. Please let us know your thoughts and concerns.
Posted by Emi on Jun 27, 2008
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
To read older news, see the list of all stories.