After 15 years the Intersex Society of North America has closed it doors. Cheryl Chase, who now goes by her legal name, Bo Laurent, started ISNA after some very frustrating conversations with doctors about the harm she felt as a result of her medical care. Some doctors responded to her suffering with indifference, but, more often, her experience of harm didn’t make sense to them because they gave what they believed to be excellent care. Rather than retreat, she decided to do something. As is often the case with outsiders in a limited position to effect change, members of ISNA protested to try to get doctors to listen and, ultimately, to improve care.
It’s not been easy. Some of the difficulties have come from trying to work with doctors and parents who often saw things very differently. Other difficulties came from within the intersex movement, where people had different ideas about what the goals of intersex activism should be. The most recent example is the heated controversyover the change in medical nomenclature (from intersex and variations of hermaphroditism to disorders of sex development). As a result of these diverse views over what ISNA’s aims should be—and ISNA having had the privilege and burden for many years of being the only group out there—many of the people who were instrumental in ISNA’s success distanced themselves from or left ISNA over the years. ISNA’s closer ties with doctors were too accommodating for some. Others felt betrayed by the new nomenclature, which they felt classified them, not their conditions, as disorders. This reaction is understandable and something and I have been thinking and writing about.
I’ve already seen some “good riddance” responses to ISNA’s closure, arguing the group did more harm than good, especially of late. But I disagree. I have been talking to doctors since 1997 about how they understand and deliver care and there is a world of difference between then and now. Back then, the idea that you would not do early genital surgery was largely unthinkable. Most surgeons also felt their results were great, or at least said as much publicly. Today, they are far more circumspect. I have talked to many clinicians who often do not recommend surgery and have cases to back this up. (Now whether parents accept this recommendation or seek out another surgeon who is willing to perform surgery is another issue.) I was just at a meeting where surgeons talked openly about how they often did not know what to do and weren’t sure whether surgery was helpful. They didn’t just say this, this doubt had changed their clinical practice. Whether they are this honest with parents isn’t clear, but I don’t think you can be questioning your work this deeply with colleagues and not let it permeate conversations with parents sooner or later. This would not have happened without ISNA.
In 1997 most assumed that so-called correct gender assignment, genital and gonadal surgery, and hormonal interventions were all that mattered for a child’s quality of life. Not so today. At the meeting I was at everyone was very clear we know almost nothing about what determines quality of life, but that it surely isn’t as narrow as getting gender assignment right.
And in 1997 it was still common to think homosexuality or gender change signaled a bad outcome, and that patients and parents were better off not being told certain things about their bodies, diagnoses, or treatment, and not meeting others. I haven’t heard clinicians say this in quite some time.
I could describe many other shifts. My point is that I think it’s easy to get caught up in rhetoric—and certainly there is room for differing views about the goals of intersex activism—but for as long as I could tell ISNA has always been primarily concerned with changing medical practice in the here and now in an effort to improve lives in the here and now. This has meant working closely with doctors—often uncomfortably. I have been at quite a few meetings with clinicians with Bo over the years. And, believe me, some of these meetings have been really depressing. Imagine bearing your deepest pain only to be told you are unlucky or just have a bad attitude. Now imagine experiencing that over and over, again and again, over a decade. I think a lot of people would have given up by now finding the pace of change frustratingly slow. What struck me is that by the next day she would be back at it, scheduling more meetings, and doing what she could to improve care. I imagine that what makes her continued commitment possible after years of frustrating experiences is her deeply held conviction that kids with intersex conditions are entitled to a life that allows them to flourish, and a deep well of hope and optimism that her efforts could help to make that happen.
