Reclaiming the Gaze: From the Medical Establishment Back to Intersex

May 27, 2008 - Speech Given at DePaul’s Women and Gender Studies Undergraduate Thesis Presentation featuring portions of IRB Approved interviews with intersex activists

When I was a year and a half old, my vagina became a source of anxiety for the adults in my life. A few weeks later it was determined by a team of experts at a local Children’s hospital whom had been compiled to manage bodies like mine, bodies that refused to fit in their categories, that my undescended testes needed to be removed. Refusing to be conquered, my body posed yet another threat and at the age of 3, the medical experts talked my parents into performing what they called necessary cosmetic surgery on my clitoris. At a shocking 1.5 centimeters in length, I was sure to grow up and be an outcast that couldn’t find a husband because my clitoris challenged his capabilities. A surgery date was set and the clitoris that once resided between my labia was now a miniature version of its former self—removed of its ability to swell and respond to sexual excitement. When I was 11, I was prescribed a daily dose of feminizing hormones and another surgery date was set. This time, the goal was to make the hermaphrodite penetrate-able. My labia and vagina were surgically expanded and modified with no regard to my vaginas ability to feel pleasure, self-lubricate or expand during the type of sex they had determined I would participate in with my future husband and his penis of normal width and length.

Fate would have it that I would attend a college that was 1 block West of the Children’s Hospital where my body had been previously diagnosed as deviant and in need of surgical and hormonal normalization. I was 19, a 1st year student here, when I first met another intersexed person. She urged me to get my medical records. I listened to her advice, and upon opening the for the 1st time I was greeted with a page from 1988 that listed my name, Jennifer, My age, 1 and a half, and my diagnosis, male pseudo-hermaphrodite 46XY. Up until that point my doctors and parents had told me that I was a normal girl who had cancerous ovaries when I was born that needed to be taken out, and as a result I wasn’t able to have a period or children. No mention of intersexuality or hermaphrodite ever came up. These new words that were meant to describe me didn’t exactly line up with how I perceived myself. How could I be male? I had breasts and a vagina and a boyfriend. And I didn’t know what pseudo meant, but I definitely knew that hermaphrodites were freaks that people laughed about in class. I didn’t want anything to do with the name doctors had secretly used to describe me. Crying, I picked up the phone and called one of my doctor’s at Children’s Hosptial. I left a message with the nurse and still have not received a call back.

When presented with an opportunity to do original research for my thesis, I immediately knew what I wanted to do. After reading the literature currently available on the topic of intersexuality, it became clear to me that not only is there a lack of intersex voices, but there are even fewer accounts of intersexed people engaging in dialogue with one another. The medical establishment has traditionally had the privilege of interpreting our experiences, and, as a result, our voices have been marginalized. I chose to address the ways in which the medical establishment has violated the positive construction of intersex identities. My research aims to challenge their assumptions about our bodies, and work to place the lived experiences of intersexuals at the center of analysis. In order to do this, I performed a series of qualitative interviews with intersex people. I began this research project with a very specific theoretical framework grounded in the work of historian Alice Dreger, intersex activist and scholar Cheryl Chase, and theorists Monique Wittig and Rikki Wilchins. After examining my results, I have become even further invested in that theoretical framework.

The following are excerpts highlighting the main themes from those interview sessions:

18 months after one participant was born and declared a boy

“they told my parents that I wasn’t really a boy, but that I was a girl and that they should take me home and change my name from Brian to some girls name that sounded similar so I wouldn’t notice the difference. . . they should keep diapers on me all the time so I wouldn’t have noticed that my genitals have changed, and that they should move to another town and not tell anyone.”

When she was a young teen, her parents attempted to give her an explanation

“the reason you had surgery was because you were born with an enlarged clitoris. . . And then they removed your clitoris.’ And I said, ‘What's a clitoris?’ and they said, ‘It's a thing that if you were a boy it would have been your penis, but because your a girl, you have a vagina so you don't need one. So they just removed it and now everything is O.K. . . but don’t tell this to anybody, any questions?’”

She later found out that doctors had scooped out the testicular portions of her ovo-testis as if it would remove her intersexuality

“I feel like who I am is so disgusting to my doctors and parents that they were happy to destroy my sexuality because it disgusted them and that if they’d known I was going to be a lesbian despite the clitorectomy, they might have been trying to scoop out the parts of my brain that could possibly be sexual.”

At one point she pleaded with a doctor for help in retrieving her medical records

“she told me she wouldn’t help me and that I didn’t need those records and she asked if I had a boyfriend. I told her I was unhappy about the clitorectomy, and she told me adult women prefer vaginal orgasms and clitoral orgasms are juvenile.”

Remembering an interaction with a school psychiatrist in 4th grade, another person shared

“they bring in this blonde white male kid and like the specialist was like just socialize with him. And I was like ‘Whhyyy? He’s not a friend, why socialize with him, what the fuck is this?’ And she’s like “Oh, just do it.” And I’m like I don’t even know what you want me to do, but no. . . Eventually she said that it was to try to get me to be a boy, or be more like a boy or something.”

Reflecting on her treatment as a child, another person stated

“ I don’t feel like when I was a child. . . that I was actually treated like a human being or an agent in any way. They didn’t ever talk to me about what they were doing, or why, or asked what I wanted, or who I wanted to be, or how I liked it. . . I never interacted with them. I was just an object.”

One participant who located herself as a trans-identified intersex lesbian commented on the pressures to conform

“Because I grew up in a heteronormative society the pressure was to be straight. Because I grew up in an intersex society, the pressure was to be a boy. . .And because I grew up in a trans society, there was immense pressure for my gender to be Man. Well in fact, I’m an intersex lesbian, I’m perfectly happy living as a woman. I’m perfectly happy with my intersex body.”

When asked what they would say if everyone, including their doctors, would listen one participant said

“Look, you’re pathetic attempt to normalize me didn’t work. Furthermore you’re pathetic attempts, plural, to normalize me resulted in, . . . actually [creating] a psychosocial emergency where I got jumped at school and had to drop out of high school.”

She continued

“I’ve managed to continue on with my life, but you know, in terms of the model working, that’s me! That wasn’t because of your model, that’s in spiteof your model that I was able to survive at all. It was only through my own will and self-preservation which you constantly undermined every step of the way by trying to forge me into being something that I’m not that I was able to survive through that.”

She also stated

“I think ironically that one of the things doctors get right some times, is that, there is a larger social stigma around not fitting into the boxes. What they get wrong is that fixing people takes the problem away.”

All who were interviewed attributed their intersex experience to the formation and development of their art, activism and resistance

“I figured out that there’s alot of people that have had the same experience as me …[and that] I can make a movement out of this in which I’ll get the people who had this happen to us come together and we’ll say we, and we’ll say you can’t do this to us, and we’ll say we’re proud of who we are!”

I would like to close with the following thoughts on what it means when we pardon our doctors, as two of the participants did in the interviews and as I am repeatedly expected to do. When we say we don’t think the doctors meant to hurt us and we pardon them as uneducated or at worst ignorant, we are again rendered silent. Whether they meant to hurt us or not does take away from the fact that they have, currently are, and will continue to hurts us. No matter how much my doctors smiled and cracked jokes with me during my annual checkups, they were still the same men who decided it was best to permanently disfigure my body in the name of normality. If we continue to pardon them, I fear we run the risk of normalizing theirbehavior. What happened to each of us individually cannot be isolated from what has happened to all of us. Whether we as intersex individuals want to acknowledge it, the doctors are part of our community. They have been responsible for fundamentally shifting the ways in which we react, and are reacted to, as gendered and sexed individuals. As one person shared, “Ideally they[the doctors] would become our allies,” and as another individual stated, as our allies they need to be aware that “we need medical attention, but not to be medicalized.” It’s when we are medicalized, viewed as other or less than, that doctor’s ethics and commitment to “first do no harm” seems to be conveniently forgotten.

The hermaphrodite is something not human, and it is in this imagined state that our bodies are fair game for the torture they pass off as medically necessary treatment. Our bodies do not fit into neat either/or categories. Since our bodies refuse to be categorized and named, violence is inflicted upon them to demand order out of our ambiguity. A culture that refuses to acknowledge our both/and status as legitimate is what needs fixing, not our bodies. When we dismiss what the doctors have done as anything other than sheer violence, we become complicit in a vendetta that systematically seeks to erase our identities because our bodies disrupt their binary belief system.

As Cal Stephanides, the protagonist in Middlesex said, “I was beginning to understand something about normality. Normality wasn't normal. It couldn't be. If normality were normal, everybody could leave it alone. They could sit back and let normality manifest itself. But people--and especially doctors--had doubts about normality. They weren't sure normality was up to the job. And so they felt inclined to give it a boost.”

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Full list of interview questions:

Please tell me about your current understanding of your condition and how you found out that you were intersex?
What is your earliest memory associated with being intersexed? What is your earliest memory pertaining to how your parents dealt with your diagnosis? How was it communicated to you?
Please explain what your experience was like with medical care professionals? Did you ever get the message form them that you were to keep anything a secret?
Some intersexed people have shared that the very procedures put in place to keep them from questioning their assigned sex (surgery, repeated doctors visits, secrecy), were in fact the very reasons they came to form an intersexed identity. What is your understanding of this and how does your sexual and gender identity line up (or not) with your assigned sex and perceived gender?
Many intersexed people speak of feeling violated and “put on display” during their routine visits to doctors offices. For example, some intersexed people tell of being repeatedly subjected to doctors and interns examining their genitals. Have you had any experiences like this?
Do you have any anger related to being intersexed? If so, what fuels that source of anger? For example, are you angry with your body, your parents and/or the medical establishment?
If you could change anything about the way your diagnosis and care was handled, what would it be?
Do you suppose that having access to support groups of other intersexed individuals would have been (or has been) of any benefit to you during your life? If so, how? If not, please explain.
What are your feelings about our current sex and gender system that only acknowledges two sexes and genders?
If you could go back and change one thing about the management of your intersexuality, what would it be and why?