XOXY by Kimberly M. Zieselman

Author:Kimberly M. Zieselman
Language: eng
Format: epub
Publisher: Jessica Kingsley Publishers
Published: 2020-03-19T00:00:00+00:00

CHAPTER 12

RESOLVING TO

CHANGE

After the conference, I returned full-throttle to my work at AIC, specifically on the Resolve Project,1 which aimed to encourage communication between intersex patients and the physicians or medical institutions who had harmed them with unconsented surgeries when they were children.

This was our attempt at reparative justice—to seek apologies from the doctors who had harmed intersex people, helping to create a path toward healing for both the intersex patients and the doctors.

Since I was not simply a staff person or advocate, I was one of those intersex people harmed by the medical community, I needed to participate in this exercise myself before trying to convince other intersex people to do this. So, in November of that year, I wrote a letter to Massachusetts General Hospital.

Empowerment is a radical act. It challenges the status quo, which isn’t always malicious, though its side effects can feel the same as the effects of a malicious act. People go with the known, the status quo, because that’s easier than reinventing the proverbial wheel, even if that wheel happens to be steamrolling large groups of people. I was taking ownership of my body and my story, and in doing so was attempting to rewrite the narrative that had been written of people like me without our point of view. Why wouldn’t the medical community want to pivot its practice away from pediatric surgery, delaying it until patients could consent?

The words were not difficult to write, though reliving the pain was. But I didn’t hedge, I didn’t have to dig deep or pace myself. This letter poured out of me. This letter was decades in the making.

I addressed the letter to the Office of Patient Advocacy:

To Whom It May Concern,

I’m a 47-year-old women with Androgen Insensitivity Syndrome (AIS), writing to share my personal experience as a patient at your hospital affected by an intersex condition, or “Disorder of Sex Development” (DSD). I know that I appear to be a DSD patient “success story,” but in fact, I have suffered and am unsatisfied with the way I was treated at Massachusetts General Hospital (MGH).

Too often I have heard of doctors reference the “silent majority” of DSD patients who have been treated in childhood and then go on to live a happy contented life, when in fact, there is very little evidence that this is so, and follow-up has been extremely limited. Medical professionals would likely include me in that “silent majority,” seeing only a woman who identifies as female, graduated college and law school, has been married for over twenty years, with two adopted children and a successful, fulfilling career.

While I have been fortunate in many ways, I no longer want my voice to be buried among that assumed silent majority, Instead, I am speaking out today to tell my story and hopefully make a difference.

My goal is to inform MGH in a manner that results in better care and, more importantly, prevents harm to others.

Thirty-two years ago, I was 15 years old with amenorrhea and referred to Dr.

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