An increase in education and awareness is certainly welcome, but it appears that IOC is overstepping its role as an athletic authority when it prescribes recommendations for how athletes' medical conditions should be managed or treated.
Further, those involved in the process have been quoted in the media that their view is that athletes with intersex conditions should be allowed to compete if they are being treated for them, establishing a new requirement that only applies to intersex athletes (that is, other athletes could follow or refuse medical advice without fear of being disqualified by the IOC).
In Women's Bioethics Project, Elizabeth Ries, a University of Oregon historian and the author of Bodies in Doubt: An American History of Intersex asks an interesting question: "Is Intersex a Disorder or a Competitive Advantage?"
Also, intersex activist and writer Hida Viloria has written a petition demanding OIC to stop excluding and stigmatizing intersex athletes, which can be found here.
]]>The questionable practice involves the off-label prenatal administration of dexamethasone, a synthetic hormone, to women who are carrying a fetus suspected of having congenital adrenal hyperplasia (CAH). While CAH often requires life-long monitoring and medication, the prenatal dexamethasone treatment does not alter any of the medical concerns; it is solely intended to address a cosmetic issue, which is to prevent the fetus girls from developing an enlarged clitoris. In fact, the treatment is terminated when the fetus is found to be genetically male.
Earlier this month, a group of bioethicists and other scholars signed a letter of concern to Federal Drugs Administration, Department of Health and Human Services, and other authorities, suggesting that the practice amount to an unapproved human subject research in violation of established standards. Advocates for Informed Choice, a legal organization working for children born with intersex conditions and their families followed with its own letter of concern, as did a group of adult intersex activists.
Additionally, Hilde Lindemann, Ellen Feder and Alice Dreger have written an article for Bioethics Forum, an online publication of Hastings Center, which also published Intersex Initiative director Emi Koyama's essay on bioethics, which seeks to put the controversy in a larger context.
For more information, read fetaldex.org, a site created by Alice Dreger to provide information about this problematic practice and challenges against it.
Update (Oct. 2010): Endocrine Society issued a recommendation against prenatal dexamethasone treatment for fetuses suspected of having CAH. Read more at Endocrine Today.
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We have received many emails from our friends about the mistreatment of South African runner Caster Semenya by the media and International Association of Athletics Federations (IAAF). We asked Sally Gross of the Intersex Society of South Africa for some advice as to how to best advocate for the intersex people of South Africa. Her reply is reproduced here with her permission.
[09/20/2009 Update] Support Initiative for People with atypical sex Develpment (SIPD) of Uganda also has an article about Caster Semenya case.
]]>Prior to 1999, the International Olympic Committee routinely verified female athletes' chromosomal sex, but it had abandoned the practice both because it had resulted in unnecessary and unfair humiliation of women born with androgen insensitivity syndrome and other XY female conditions, and also because there is no definitive medical test that can determine who should be allowed to compete as a woman. The Beijing decision runs contrary to this recent development.
Perhaps it may be the case that the Beijing committee is simply trying to prevent non-intersex males from competing as females, and has no intention to exclude women with AIS and other similar conditions. But the result would be the same: many women would consider being treated as a "suspected male masquerading as a female" is humiliating enough.
Given the absence of any evidence that non-intersex, non-trans men are trying to compete as women (except for the fictional Bender from Futurama universe, who posed as a Robonian fembot), the impossibility of devising a definitive test to determine one's "true" sex, and the harm such test could pose to female athletes born with intersex conditions, the International Olympic Committee should go one step further and prohibit the use of genetic and chromosomal test to determine an athlete's qualification.
]]>For Harris, who has identified as female her entire life, finding out she is a male genetically felt like a burden lifted after growing up feeling so different than everyone else, even sometimes within the queer community.
"When I came out as a lesbian, the women I dated would say something's not right. I'd say I'm fine, you're just small," Harris said, referring to having an enlarged clitoris. "Of course, I said that to feel comfortable with myself."
[...]
As a child, Harris said her mom used to tell her she was "supposed to be a boy" because that's what an amniocentesis test revealed. And while her father called his other daughters "pretty," he always said Harris was his "handsome daughter."
"And that used to bug me. I didn't understand," she said.
Harris shared childhood memories of being potty-trained and always standing up to use the restroom. Her mother begged her to sit on the toilet, telling her that life would be hard if she went into a female restroom and was seen by someone else standing to urinate.
In the sixth grade, that did happen. The incident so embarrassed Harris that Harris finally learned to use the restroom sitting down.
Then there was the attraction to other girls.
"I knew I was always attracted to females growing up. It was natural to me. Mentally, when I dated women, I thought in male terms," Harris said.
Since Harris was in junior high school, she has been able to grow a full beard and moustache and shaves every day. She said she also grows excessive hair on her chest and stomach--signs that someone might be intersex. Her enlarged clitoris, or micro-penis, was also a sign. But never knowing what being intersex was or having anyone to talk with about what she was going through caused Harris to keep her confusion stuffed inside.
"The reason I'm here is this is a healing process for me. It's important to share my story," Harris said.
"Growing up, not knowing what was going on, was hard. There was something not right. Now I know all the things I felt growing up weren't me just bugging out," Harris said. "If I can help just one person, this is worth it."
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.
]]>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."
]]>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.
Source:
Lerner M. 2006. "St. Paul doctor disciplined by state board." Minneapolis Star Tribune. November 21.
Clearly, parents have genuine and understandable concerns about and distrust for the drastic radiation therapy, but the current medical knowledge does not support their choice to put their daughter through a Vitamin C treatment only. The state also has a clear interest in protecting the child from parents' misguided and harmful medical decisions, but the instruments of the state that is readily available--the Child Protective Services--is too extreme and ineffective at addressing the child's best interest in medical decision-making. As a less drastic alternative, Judge should have appointed a medically knowledgeable case worker to represent the interest of the child foremost and allow that person to negotiate with both parents and physicians.
Source:
Dreger AD, Chase C, Sousa A, Gruppuso PA, Frader J (2005). "Changing the nomenclature/taxonomy for intersex: a scientific and clinical rationale." Journal of Pediatric Endocrinology and Metabolism. Aug;18(8):729-33. Also see the response by Houk CP, Lee PA, Rapaport R.