Remembering my Queer Body...

When I was born, my mother thought she had a beautiful, healthy baby girl. I was her first child.

At about 6 months old, a nurse decided my clitoris looked a bit large and I was sent to the doctors for tests.

They discovered I had internal testicles and XY chromosomes, and gave me a (mis)diagnosis of Androgen Insensitivity Syndrome (AIS). As part of this process they surgically opened my abdomen, leaving a scar. They also (I think somehow at the same operation) operated on my infant genitals to reduce the apparent size of my 'clitoris'.

I remember, as a child, going for unexplained visits to the hospital that felt shameful and a bit frightening. But according to my (brief and sketchy) medical records I didn't see those particular doctors again until I was 10yo. The records note that by that time my 'clitoris' had grown again. They further reduced the apparent size of my clitoris and re-opened my abdominal scar, removing my testes (and for all I know doing tests on them, playing ping-pong, keeping them frozen, or just throwing them in the garbage).

I have no memory of this operation, despite the fact that I have other memories from that time and before. I do have flashes of images of hospitals, nurses, smells, feelings of strangeness and anxiety there.

I was very upset about the visibility of my re-opened scar. I already knew it was evidence of something that was supposed to be secret. Anxiously, I asked for advice from my mother and doctor on how to explain it to other kids. The only advice I remember was being told (almost dismissively) to say "appendix" for now (but I knew the scar was in the wrong place) and that later I'd be able to say "hysterectomy". I didn't even want to lie to anyone, so I determined that no one should see my scar.

I don't remember having any familiarity with my genitals, and don't recall touching them or looking at them in my childhood, except to wash.

When I was 11yo, my mother and step-father told me one night that I had no womb (and could never have children), wouldn't menstruate, and that I didn't have a vagina (yet). No mention was ever made about my gender (except to reinforce the lie of my femaleness) or my testes that had been removed, or to explain the operations I'd had. I remember crying quite alot about not being able to have children. This was despite the fact that I assume my mother, knowing more about my body, would have always encouraged me away from child-nurturing type play etc.

That discussion was a precursor to a doctor telling me I didn't produce my own hormones (no mention of my own natural hormone-producing testicles that had been removed) and that I would have to take oestrogen tablets every day for the rest of my life (or at least until menopause age).

I was very upset about that idea and I think fairly burdened by then by shame and an anxiety about all the mystery and 'terrible' secrets about my body, my trips to the hospital, my scar, my secret tablets, and I guess a sense that I was different and unnatural etc.

They also X-rayed my hand to predict my height.

Around that time, at one particular doctors' visit I recall, the doctor told me he wanted to take a sample of skin from my genital area. He said it was for research to help other people. He said it wouldn't hurt and that it wouldn't leave any marks (I'm crying now). He & my mother discussed it alone for a bit and she came back and suggested I go ahead and do it. I was afraid, and didn't want to do it, but I did.

I stood there with my pants off (my mother out of the room). He clamped some skin where my labia majora met and snipped off a piece. It hurt a lot. And I had several stitches there. It was many years before that scar faded and I grew enough pubic hair to cover it. That experience haunts me as proof that people can't be trusted (despite their best intentions or love).

I remember finding a newspaper clipping in my mother's filing cabinet. It was titled something like "Is it a boy, or is it a girl?". I was a bit shocked and asked my mother if it was to do with me. She said it wasn't.

At around 13yo, I remember asking my mother if I could go with some friends who were hanging out with some older boys. When she hesitated I said, "Why not? It's not like I can get raped."

She looked at me in a way that implied, "Exactly".

I didn't say anything more, and I didn't go.

When I was about 14yo, at the start of the summer holidays, they operated to make me a vagina. After the operation (which I felt incredibly ashamed about, before, during and after) I was told that after starting to cut, they discovered I had a vagina after all, and that had they only needed to open it (I guess that was my official deflowering).

They sent me home with some glass tubes, some lubricant and told me to insert them for twenty minutes (every day, then every two days, once a week etc.).

My mother gave me a tupperware box to hide them in (and a lot of persynal space at home). I hid that box very carefully. I'd lock my bedroom door and spend twenty minutes reading with a glass tube in my vagina, moving it around. I remember the sense of anxious secrecy and the discomfort.

Months later my mother eventually realised I was still regularly doing this dilation - no one had told me I could stop.

I also strongly remember one of the examinations I had with a doctor. It wasn't the only time a doctor put on a rubber glove, lubricated it and put his fingers inside me. But I remember one specifically when I was particularly anxious and crying heavily with my mother holding my hand while he did it.

The beginning of my sex life at 15/16yo was the start of my genitals being a source of pleasure, and not just shame and discomfort. I slept with some boys, then later with wimmin.

In my mid-twenties I took my then boyfriend (who had a science background) to see my female gynaecologist (who seemed wonderful, letting me ask the questions, not doing any physical examinations etc.). I asked her to explain to us both about "all this stuff".

I remember her talking about XX and XY chromosomes, and saying that what I had was one X, and another broken X that was smaller, or looked a bit like a Y because one of it's legs was missing. Maybe that's when I first heard the term AIS.

A few years later (aged 29), still ignorant, I bought a computer and went on the internet for the first time. One of the first things I thought to look for was AIS. First I tried Androgen Immunity Syndrome. But I soon discovered the AIS U.K. Support Group website which began my internet addiction, and my education and journey of discovery about intersexness, my body, and how it has been treated, and why; and started connecting with people around the world either intersex, genderqueer or in some way working with or respectfully interested in intersex people and experience.

One of the many things I have discovered is that while AIS has a basically feminising puberty, my body (which probably is 17 Beta Hydroxysteroid DeHydrogenese Variant - I still don't know for sure) would have virilised. I don't feel my (fairly fluid) gender identity particularly threatened by that. But I feel medically manipulated to pass as female. I feel a loss of a sense of integrity about my body, it's shape, it's size etc.

Sometimes I feel so relieved to be freer and freer of the secrecy, shame and mystery that I've carried for so long.

Sometimes I feel excited and very special to be such a rare kind of humyn.

Sometimes I feel like someone damaged and reconstructed; that the artificiality and mistreatment of my body has left me undesirable and unlovable. And I mourn all the pain, and especially the loss of time and relationships I've had, initially in ignorance about important aspects of my own life, and the later, having to deal with them and the ramifications of my (mis)treatment.

This isn't the only story of my life. Amongst other things I'm Jewish, I'm a musician, vegetarian, left-handed, and activist, a feminist, a lesbian, a greenie- trying to live, work and love with radical nonviolence and nonhierarchy. And I can be pretty funny when I feel like it.

with love,
Shorona se Mbessakwini,

Shorona has written several articles in our dAISy newsletters including "Gendercide" .

Intersex Exposition: Full Monty, a short film (7 minutes) made by Sharona about her real-life experience. Shorona performs at a lesbian strip club in Sydney and 'comes out' as Intersex (naked) during the performance.

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Last update: 22 January, 2014

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