I was born with what’s now called Partial Androgen Insensitivity Syndrome (PAIS). That means that I, like women with CAIS (Complete Androgen Insensitivity Syndrome), have XY chromosomes and was born with internal testes.
Unlike women with CAIS, however, people with PAIS are not generally born with genitals that look completely “female.” This is because the androgens (testosterone) that are produced in fetuses’ bodies, which do nothing in those with CAIS, do cause PAIS kids to virilize resulting in so-called “ambiguous” genitalia at birth.
When I was born, as it had been for several decades prior, the standard “treatment” for such cases was to operate, and “normalize” the genitalia’s appearance. Surgical techniques had certainly become more sophisticated as technologies improved, but the general idea was the same: This child’s body does not fit into the narrow classification boxes, this inescapable categorization that defines virtually everything about someone in our society. We must fix it …
I grew up as a relative success story in the grand scheme of intersex stories. I was a happy little girl who never questioned her gender identity. They had “gotten it right,” so to speak. I don’t recall any demeaning examinations, and because my surgeries occurred so early, I never remembered anything about them.
I happened to also be born with a heart condition so I never thought too much about why I had to go to a different doctor every so often. After all, not too many 8 year olds know what an endocrinologist is.
It wasn’t until I was 11 that my parents broke the news that I would never be able to have children, that I would never get my period, and that I would have to take medicine in order to develop like other girls, and continue to take it for the rest of my life.
Certainly the very basic notions of a “normal” life I had previously envisioned were severely affected by my knowledge of these truths, but as the years went by, what became my more compulsive struggle was not the symptoms themselves, but rather the monolithic shroud of secrecy and shame that surrounded anything to do with them.
The explanation that night for why I was exceptional was vague, I seem to recall my mother saying something about being “born without the internal organs.” My parents tried to reassure me that I could adopt children, and most significantly, that I would “have a completely normal sex life with my husband.”
It was that last part that stuck with me in an unimaginable way over the next few years, as I came to realize that something else must have been going on. I could clearly feel that something wasn’t the way it was supposed to be: that what was supposed to feel really good didn’t really feel like much at all. But I couldn’t fathom that my parents would just lie to me.
As I progressed through high school, I wanted desperately to know what was actually wrong, but I couldn’t find the nerve to simply ask. I ended up finding out the full details of my condition when I was 16, somewhat by accident, when I found an AIS Support Group newsletter in my kitchen.
It wasn’t until several years later that I was able to admit to myself that I was actually attracted to women, and then several years after that to tell anyone (about any of it) or do anything about it. For so long, I felt like being attracted to girls was a failure - that it was somehow letting this “thing” define me.
Dealing with my sexuality in conjunction with being intersex (an identity which I only very recently claimed as my own), and having had damaging “normalizing” surgery on top of all of that, certainly compounded my struggle.
There are times when I feel completely disconnected from my body. Unlike transgender people, this is not a feeling that my body is not the right one (gender dysphoria), but rather it’s a feeling that somehow my body is not my own, that it does not belong to me.
Thinking about the philosophical implications of the body is nothing new in human history. A large part of that philosophy deals with the notion that the body acts as the border between our subjective, spiritual selves – our minds, our souls – and the rest of the objective, physical world. In other words, our bodies are simultaneously physical and spiritual – they are both objective and subjective.
This is problematic for me, because my body was irrevocably altered, without my consent, before my spiritual self could really get any chance to exist. The body I was born with, deemed “ambiguous,” and thus impossible, non-existent, by the rules of society, is not the one that I’ve ever known.
A large part of the “body-positive” movement is about accepting your body for what it is, even if the rest of society tries to shame you for it. But even this acceptance of all bodies, and rejection of such notions of “normal,” does not create a channel through which I can embrace my body.
That is because such celebrations of bodies are about reclaiming them as one’s own, in opposition to outward oppression. For while destructive norms affect [most] other bodies through the non-physical realm, this is not the case for me. In other words, the basis of this movement is that no body is “wrong” and that the negative thoughts society makes us feel about our bodies are development of an oppressive way of thinking, a subjective falsehood.
On the other hand, the subjugation, the oppression, of my body as it existed, or may have had the opportunity to exist, was objective and remains all too tangible. That is to say, what was done to me didn’t just affect the way I think about my body – it actually affected the way my body, objectively, is.
The imperialist conquest of my physical self preceded my psychological self. I don’t exist apart from what was done to me. As such, I’m not sure I will ever be able to reclaim my body as my own.
Despite this seemingly depressing conclusion, I still take solace in those words of Lewis. The body that I have may never feel completely like my own, but my soul unquestionably is.