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This letter to the editor is in response to the article "Attitudes of adult 46,XY intersex persons to clinical management policies," published in the Journal of Urology.
Editor,
I applaud Heino Meyer-Bahlburg, Claude Migeon and others for the first-ever survey of adult intersex patients' attitude toward the management policy of intersex conditions. Part of the study confirms what both activists and clinicians already knew: most intersex patients are satisfied with the gender they were assigned to, and do not support a third gender category for intersex children. But the question about genital surgeries do not accurately represent the position of activist groups.
The question goes: "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?" In reality, activists are arguing that the surgeries should be delayed until the child is old enough to participate in the decision-making in a meaningful way, and not necessarily adulthood. Also, activists want surgeries to be replaced with counseling and peer support for both parents and the child, and do not advocate that these children be simply left alone; in fact, the focus of intersex activism has always been to end the pattern of shame, secrecy and isolation that are imposed on families with intersex children, rather than simply stopping surgeries. Perhaps clarifying these points would have changed many participants' responses.
According to the study, women born with ambiguous genitalia or micropenis are far more likely to endorse surgery before adulthood than others. This is not surprising considering the fact that these women could experience masculinizing puberty unless their gonads are removed at or before puberty. Even the most hard-core activists support their right to have testes removed if they wish--but is it really necessary to perform gonadectomy during infancy or when the child is too young to participate in the treatment or to indicate her true gender identity? That is the question activists are raising.
Meyer-Bahlburg et al. state that "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." I wholeheartedly agree. But how come activists were not invited to help devise the survey or to help interpret the data? There are many activists who are professionally trained in related fields who could take on such tasks. Perhaps if activists were involved in the design of the research, the survey could have asked better questions and collected more meaningful data.
Yes, let us collaborate. We welcome the fact that experts are finally asking the patients what we feel about the treatment we have received, but we could be doing even better. Next time, please invite activists to help design and conduct the research, rather than merely treating intersex individuals as the research subjects or giving us lip service. By working together, we will be closer to finding out how best we as the society could help children born with intersex conditions and their families.
Emi Koyama
Director, Intersex Initiative
http://www.intersexinitiative.org/