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Heino Meyer-Bahlburg, Claude Migeon and other intersex medical specialists are the co-authors of "Attitudes of adult 46,XY intersex persons to clinical management policies," arguably the first-ever follow-up study in which they actually asked intersex individuals what they thought about the cosmetic genital surgeries performed on them. According to the study, which was published in the April 2004 issue of Journal of Urology, "the majority of respondents [...] did not agree that corrective genital surgery should be postponed to adulthood and stated that their genital surgeries should have been performed before adulthood," despite intersex activists' criticisms of such surgeries in the past decade. However, a close examination of survey questions reveal how this finding does not necessarily contradict the position of the intersex movement.
The study involves 72 participants with 46,XY chromosome pattern, who are divided into five groups depending on the nature of their intersexuality and their assigned gender. Those who exhibited visibly intersex genitalia at birth are categorized either as "ambiguous genitalia" or "micropenis," each of which are divided into those raised as women and those raised as men. The last group is the people born with unambiguously female external genitalia who are nonetheless intersex because they have 46,XY chromosomes (all but one of them have complete androgen insensitivity syndrome).
Part of the study confirms what doctors and intersex activists already agree on: that the majority of intersex individuals feel okay about the gender in which they are raised, while some of them wish to transition to another gender, or that the majority of them do not think assigning intersex children to a "third gender" is a good idea. The controversial part is where the study reports that the majority of 46,XY intersex people (by the margin or two-to-one) disagree with the notion that cosmetic surgeries on non-consenting children should not be performed.
The actual question here is phrased this way: "Some people argue that children born with unfinished sex organs (ambiguous genitalia) should not be surgically corrected before they are adult and can fully understand and consent to the procedures. Do you agree?" Already, there are two distortions of intersex activists' positions: first, intersex activists want surgeries to be postponed until the child can participate in his or her own treatment in a meaningful way, but not necessarily until adulthood; second, we want surgeries to be replaced with counseling, support groups, and other less invasive solutions, rather than just ending surgeries and leaving the child alone.
In addition, looking at specific distribution of "disagree" answers to this question, you would recognize that women from "ambiguous genitalia" and "micropenis" groups are far more likely to support surgeries than the rest. This is perfectly understandable when you realize that these are women with functional testes that could cause the body to masculinize unless they are surgically removed at or before puberty: no wonder they don't want to have to wait until adulthood before they can consent to the surgery to remove their testes! But is it really necessary to remove their gonads during infancy or early childhood, long before we even know that the child actually identifies as a girl? Certainly, "surgery" and "no surgery until adulthood" are not the only options.
Indeed, intersex activists have demanded not just an end to cosmetic genital surgeries on children, but replacing these surgeries with social and psychological support to end shame, secrecy and isolation that are socially and medically imposed on intersex children. And yet, the only portion doctors asked was whether or not surgery is a good idea; why do they continue to forget to ask us what kind of support and information might have been helpful as we grew up? Fundamentally, the question should not be framed in terms of surgery vs no surgery, but rather how to improve overall quality of life for those impacted by intersex conditions.
To the question regarding at what age surgeries should be performed, respondents are evenly split between wanting it to have happened during infancy and wanting it to be postponed at least until adolescence. It is hard to interpret this information because researchers did not ask at what age they actually had surgeries, but one possible explanation is that the majority of people received surgeries somewhere in the middle (between toddler age and adolescence) and really hated whatever they went through.
Researchers concede that findings on the small and selective (quarter of the patients coud not be contacted, and another quarter refused to participate) sample from one clinic could not be generalized to the general population, but caution that "the representativeness of the case histories on which activists base their critique and suggestions for change is totally undocumented and suspect." That is true: however, it is doctors' job to have studied potential negative consequences of intersex cosmetic surgeries before it is widely practiced--a responsibility they have evaded for the last five decades in violation of the public trust on their profession.
Toward the end, researchers state: "It is quite conceivable that the activist material is too negative and the data from clinic samples are too positive. Thus, collaboration between clinicians and activists is called for." But if that is what they truly believe, how come none of them invited activists to help devise the survey or to interpret the data? There are many activists as well as professional members of activist groups who are trained professionally to do take on such tasks, myself included.
Yes doctors, let us collaborate. We welcome the fact that you are finally asking patients what we feel about the treatment we have received, but we think it could be even better. Next time, please invite us to help design and conduct the research, rather than merely treating us as the research subjects. By working together, we will be able to ask the right questions and find out how to improve the treatment of children born with intersex conditions.
Source:
Meyer-Bahlburg HFL, Migeon CJ, Berkovitz GD, Gearhart JP, Dolezal C, Wisniewski AB (2004). "Attitudes of adult 46,XY intersex personsl to clinical management policies." Journal of Urology. 171: 1615-1619.
Posted by Emi on Apr 17, 2004