Progress in Intersex Care!
As ISNA enters its second decade of life, Cheryl Chase (ISNA’s founder and Executive Director) and I have been reflecting on the astonishing progress we’ve seen in attitudes towards people with intersex conditions. So many people now know of intersex, so many care providers are employing a patient-centered model of care. We still have a lot of work to do, but those of you who have helped over the years should be very proud of what has been accomplished.
Here’s just one sign of progress:
In a recent issue of the prestigious medical journal, BJU International, physicians S. M. Crighton and L.-M. Liao documented the “Changing Attitudes to Sex Assignment in Intersex.” Drs. Crighton and Liao point out that “surgical sex assignment and genital surgery in intersex are increasingly challenged now,” and that “it is not the good intentions of surgeons that are called into question.” Instead, clinicians are finally asking what evidence we have regarding what patients really need to be well in the long-term.
Crighton and Liao note that some of us—professional care providers and intersex advocates—who have been agitating for change have “been mischievously misrepresented as advocating a third sex.” The reality is that “what many experts say is that in view of the lack of consensus amongst medical practitioners, social and psychological analyses, ethical critique, and strong reservations from at least some recipients of the standard approach, a re-examination of the situation is long overdue.”
What about the claim we frequently hear, that delaying elective genital surgery until the patient can consent is experimental? The authors of this article respond (and we agree) that “sex assignment by genital surgery also represents an experiment involving invasive, risky, and irreversible intervention. We are unsure how the absence of rigorous evaluation of the intended outcome could ever have been justified in interventions with such grave consequences…”
Good medicine for intersex is the same as good medicine in any other case where there is significant uncertainty: the clinician must “share the diverse opinions with patients and parents and assist them to develop their own responses, or pretend to certainty and intervene before they learn what questions to ask.”
The complete citation for this article follows. If you want a copy, ask your local librarian to help you obtain it.
Meanwhile, if you want to see ever more sensible thinking about intersex, like the kind exhibited by Drs. Creighton and Liao, please consider donating to support our efforts so we can keep effecting positive change through our Medical Education Reform Initiative.
Reference: S. M. Creighton and L.-M. Liao, “Changing Attitudes to Sex Assignment in Intersex,” BJU International, 2004, vol. 93, pp. 659-664.
By Alice Dreger (Chair of the Board of ISNA)