These are the ladies who lunch and strategize about intersex policy changes. Kimberley Zeiselman writes as a person who is aware of her generally privileged social location; she describes a life in which she's been at ease to move comfortably from Boston to Manhattan and back, and to journey with her husband to China and stay for a month in order to adopt children. I think sometimes the juxtaposition, of a life otherwise unencumbered with stress, against the specific experience of a marginalized identity, can make it easier to focus on the difference that having such an experience makes in a life.
Zeiselman is intersex. She is an example of CAIS, where the body's structure is completely impervious to the androgen hormones that, for most people with XY chromosomes, causes their body to develop with male morphology. She was regarded and raised as a girl, perceived as a female person with no questions raised by doctors, parents, or herself until the day when a persistent abdominal pain led to a poorly-explained operation. An operation where the particulars of what the surgeon was going to do were cloaked in euphemisms and lies.
Our culture has oscillated back and forth between an attitude that doctors know best so we should trust their judgment and a respect for patient self-determination and the importance of doctors explaining the options and letting the patient decide. In June of 1983, when Kimberley Zeiselman and her parents were asked to consent to abdominal surgery, the pendulum was strongly towards fully informed consent. But the fifteen-year old Kimberley and her family were told that she was at risk for cancer and that her ovaries needed to be removed for her health and safety.
But those weren't ovaries. Nor, as Zeiselman points out in a later chapter, was the risk of medical complications anywhere near as clear-cut as that. The surgeons removed Kimberley's undescended testicles, and put her on a lifetime regimen of hormone treatments. Why? Because it's what doctors thought they should do in cases like this. Eek, oh how embarrassing, got to get rid of those at once, hide this shameful fact so no one can find out. Cloak everything in lies and silence.
Kimberley Zeiselman learned the classic Yankee emotional inscrutability as part of her cultural inheritance. It was a world where internal turmoils aren't expected to be shared, just endured. The scene in the book where she discovers what had been done to her, and the fact of her difference, is stark and cold. The doctor writes her a prescription for anti-anxiety medication, then suggests "maybe it's time we dig out your old medical records so that you can better understand the surgery performed and put your fears of cancer to rest". Then the doctor leaves her alone in the room to read the account of how her testes were removed and found to be healthy and with no signs of malignancy.
We often learn shame by being protected from shame. When people whisper to us and wait until there's no one to overhear, the need for secrecy and the fear of exposure are taught to us. Zeiselman struggles with the shadow of inferiority and inadequacy. So much of her experience is expressed in the negative, in the things she doesn't participate in. In the years before the medical procedure, her best friends got their menarche but she was left behind wondering why she never got her period. After the operation, still not knowing anything about her intersex condition, she knows she will not be able to get pregnant and give birth.
Zeiselman's emotional habits carry over into her writing. She often skitters away from immersing the reader fully in what she was feeling at the time. She often summarizes events in places where, as reader, I wanted fully fleshed-out scenes, a more immersive experience. When her intersex condition is first revealed to her, Zeiselman gives us glimpses of the shock, and the intensity of her curiosity and being haunted about the impact of her stunning discovery. Tellingly, she wants the news to be shocking to the other people in her life, for them to react as if a bombshell had gone off in their midst, as if unless someone is willing to scream on her behalf there can be no screaming.
Kimberley Zeiselman becomes a policy activist, leveraging her connections in society to make a difference for intersex children. Sometimes the weariness of policy defeats and fighting the same battles recurrently make it sound like Sisyphus rolling his boulders. The medical policy on clitoris reductions for CAH intersex babies is the most formidable boulder. CAH — Congenital Adrenal Hyperplasia — is a phenomenon affecting XX people in which the adrenal gland releases high levels of hormones that prompt the body to develop male attributes. The tissue that constitutes a clitoris tends to be larger, anywhere on a continuum from typical clitoris size to the size of a penis. And as Zeiselman added her voice to that of other intersex activists to outlaw nonconsensual surgery and leave the decision in the hands of the patients, she found the medical establishment insistent on their right to pare down or remove this tissue in the name of normalizaton.
Kimberley Zeiselman learned advocacy of behalf of others from raising her children, fighting for their right to a tailored and appropriate course of education. She took her skills and experience into the intersex rights fray, fighting her own fight, only to eventually end up largely immersed in a specific battle that centrally affects CAH intersex children. The identity called intersex is actually a constellation of several different situations, and enunciating the identity intersex is not only a rejection of the medical terminoligy that calls these conditions disorders, it's also a commitment to solidarity. Not all intersex people are identically situated but they can be unified politically as a marginalized community of people finally demanding a voice.
XOXY: A Memoir, Kimberly M. Zeiselman. London: Jessica Kingsley Publishers 2020. Available from Amazon and other retailers; Facebook author's page
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