DAYS AFTER EXPERIENCING stomach pain on Thanksgiving 2007, Kimberly M. Zieselman went to the hospital, where at 41 years old she was handed a manila envelope containing a medical record that would re-define the rest of her life. Inside was a sheet of paper with her name, and next to it, the then-mysterious terms: Male Pseudo-Hermaphrodite. Testicular Feminization. Androgen Insensitivity Syndrome. Over two decades earlier, at 15, she’d had what her doctors informed her was a hysterectomy to remove partially developed female reproductive organs that might become cancerous in the future. Since then, she’d been living her life as a menopausal woman, going on to become a lawyer, a wife, and a mother of two adopted children. Now, staring at the form, she wondered: “What was this saying? What was any of this saying?”
XOXY, Zieselman’s first memoir, is her attempt to answer those questions, a gripping journey she takes readers on as she slowly unravels the truth of her identity as an intersex woman. We follow her as she learns to navigate the vocabulary (“Hermaphrodite — that sounded like a mythological being — born with male and female parts. Testicular Feminization — what the hell was that?”), the social repercussions of a secret that was thrust upon her by the medical community, and her unexpected ascent into activism. Written with the sharp, unflinching, and often hilarious prose of a woman on a mission to be her authentic self, XOXY is a story about the devastating consequences of being denied the right to know who you are, and beyond that, the love and support available to those with the privilege to be themselves. I spoke to Kimberly about joy as advocacy, erasure, and phony people.
EDGAR GOMEZ: As the executive director of interACT: Advocates for Intersex Youth, you’re no stranger to sharing your story publicly. Still, you describe growing up in a household that encouraged you to bury your emotions and “make things easy” on your parents and doctors. Did you have any lingering reluctance or concerns when you were approached to write XOXY?
KIMBERLY M. ZIESELMAN: Absolutely. I never planned to write a book, especially one that exposes me so personally, as well as my parents. However I’m driven by the mission to stop the harms caused by medically unnecessary surgeries on intersex children and the need to raise awareness — and outrage — using any medium possible. So after ignoring the request to submit a proposal for several months, one late December night, I decided to try putting thoughts on paper and a couple of hours later, to my surprise, I had created a robust outline. I continue to have a little bit of anxiety about the release of the book and some of the things it reveals. The “good girl” deep inside of me will probably always feel some conflict over that.
One of my favorite parts of your book was witnessing you slowly reclaim anger, an emotion that was stripped from you by a culture that insisted you be that “good girl.” We’re in a political period where it’s been argued that anger is divisive, and perhaps we should be striving to build bridges. What are your thoughts on anger as it relates to advocacy?
I think it’s really all about empowerment. Feeling empowered to speak up for myself, and others. Despite being educated as a lawyer, I am really quite conflict averse. It’s empowering to speak one’s truth and to live an authentic life. Feeling and showing “anger” is just one of my many emotions — and it’s valid. At times, I think that anger is necessary fuel for advocacy.
From feeling like there was something different about you as a teenager, to being fascinated by Jeffrey Eugenides’s Middlesex, your story is riddled with foreshadowing that grows eerier and eerier as your story unfolds. What was the experience like of going back and filtering your life through the lens of what you know now?
It was certainly difficult at times. I was really surprised by the foreshadowing as it unfolded from my memories. I had moments of wondering to myself, “How did I fail to realize more about what had really happened to me?” or questioning whether I was simply ignoring information I had “heard” but was not able to accept. But, what the process of writing this memoir helped me to understand is the power of my mind to protect itself from perhaps more than it was able to handle at any given time. The repeated disassociations I experienced are an extreme example.
Halfway through the book, you discover a community of other women with Androgen Insensitivity Syndrome. You speak about how, as those women helped you come into your own, you became irritated with other people who weren’t “authentically themselves.” What do you think frustrated you about, as you call them, “the phony backslappers, the sycophants, people trying too hard to be something they weren’t”?
After finally meeting others like myself who were survivors of harmful physical intervention and the resulting profound psychological and emotional damage, now learning to accept themselves and forgive those who played a role in the harm, I simply had no patience for anything fake, phony, or untrue. It was as if I suddenly had an allergic reaction to people who were putting on a facade and not being their true selves. It was something I had wanted for so long and now that I finally felt I could live my truth it was appalling to me when others didn’t embrace the same. It may not have been totally rational, but it was my honest reaction and sentiment at the time. And even today, my tolerance for anything beyond authenticity is minimal.
Following the surgery you were told was a hysterectomy, your doctor mentioned a mysterious “woman in Canada” with a “condition” similar to yours. Imagining her, you say, “I felt not so alone.” Later, you speak proudly about your consulting work on Faking It, the first TV show with an intersex person as one of the main characters. Representation was clearly important to you both as a young girl and an adult. What thoughts did you have about representing — if only a fragment of — a community that is not often given the opportunity to tell their own stories?
Representation is hugely important, I think not just for intersex people like myself, but to all humans. Intersex people have been around forever, but have been mainly invisible due to the stigma and shame put upon us, specifically on our bodies, by society. And in many cases, intersex people have been surgically “erased.” Or, at least medicine has tried to erase us by “fixing” our bodies to fit into neat little binary male or female boxes. Unfortunately for many, if not most intersex people, the experience of being stigmatized, medicalized, and made to feel disordered and alone are common experiences that form the narrative and indeed even an identity around being “intersex.” There are very few intersex narratives currently in literature, film, television, or other media. How different my life (and the lives of thousands of others) may have been had I been able to read about, or watch on screen, an intersex person’s struggles and joys in the world. And not felt instead like an isolated freak.
There is often pressure on people of marginalized experiences to highlight the suffering in their stories. While trauma is part of yours, there is also much joy in XOXY. You write:
Although one may think that being told I had typically male chromosomes and testes might have made me feel even less real and more like I was faking life as a female, it in fact did just the opposite. When I finally learned this truth, it was very affirming and anxiety-releasing.
Was highlighting joy an intentional decision?
I don’t think specifically highlighting joy was an intentional decision but simply much more of my authentic self pouring out on to the pages. If I had a magic wand and could remove the intersex traits from my body and magically change my narrative I wouldn’t do it. I honestly feel that my experiences have ultimately been gifts. I am not a very spiritual person but I do believe things are meant to be. Like adopting my twin daughters. Along with some hardship I have been blessed with numerous joys and privileges in my life. I do think all of it can be a form of activism. If nothing else, I hope my happiness and measured successes in life can help show parents of intersex babies that being born intersex isn’t a bad thing — your child can absolutely be happy and healthy.
What takeaway do you hope readers will leave XOXY with?
I hope readers will take away an understanding of what intersex means, and that it is not something to be afraid of, but instead something to be embraced as beautiful variances in human bodies and experiences. Intersex people are everywhere and can be straight or gay, trans or cisgender, and have as many identities and differences as the rest of the human population. Specifically, for parents and family members of intersex children, I hope they will better understand the realities of invisible harm that may be done to a child, despite their best intentions, and that they will see that having an intersex child is not an emergency or something that needs fixing, but perhaps just a complexity that requires love, support, and space for making decision about their own body and future identity.