It's Not Anecdotal.

TRIGGER WARNING.

This post talks explicitly about medical "treatments" experienced by some intersex people, including vaginal dilation procedures.




Readers, I have been struggling a lot lately. I don't often talk about my own medicalization, except to say that it wasn't consensual and it messed me up, but thoughts about my medicalization have been more frequent lately, more intense, upset me a little more than it used to. Before, what had happened to me was something more abstract, with greater distance in the past. It happened, it sucked, it wasn't what I wanted, it was awful and should have never happened. It was there, but that was it. There wasn't anything to engage with. It was almost like those experiences were part of a historical consciousness I didn't experience directly...it was something important to who I am and why I am who I am, but at the same time, it has nothing to do with me, specifically. It's not really about me.

Except, until it is about you.

Those things really happened to me. I feel like the ice has broken, and now all the stuff that has been frozen, moving slowly underneath is starting to move and to thaw and be active and make me miserable. I've read personal accounts of intersex people, and several of them have stated something to the effect of, "You can't deal with what's happened to you when you're younger. Your 30's are for dealing with the trauma you've experienced from the medicalization and shame and denial." I'm 28 years old. I think it's time to start getting ready for what's happening to me now.

Part of my problem is that, even though it may seem ludicrious, I don't feel like I can really own, am really entitled to be upset about what happened to me. The way I operate is akin to someone who has been sexually abused. I wrote previously about a piece that intersex activist Emi Koyama wrote, that riveted me when I saw it: that many intersex people experience their medical trauma very similarly to children who are sexually abused. The moment I saw this written out in paper, something clicked: yes, this is how I have been feeling. I have been pushing this feeling down for so long, because it seems absolutely offensive to people who have undergone sexual abuse. My experiences are not "real" abuse...how could I claim something I have not experienced and make a mockery out of the things survivors have had to face and heal from? I can't be that much of a victimizing, identity-stealing awful-thing.

But the similarities are striking. Intersex people are told that they can't talk about who they are and what their experiences are. We are made to feel shameful and freakish about our bodies. We are taught to fear our physical selves. We are subjected to experiences that we cannot consent to, do not want, and are scared of - experiences that involve touching, examining, and inserting foreign objects into our most private of parts. We are young, and do not understand the ramifications of what is being done to us. The "treatment" we experience often emotionally and psychologically scars us. We have trouble forming intimate relationships. We have fraught and unhealthy relationships toward sexual activity. Some of us avoid having such close, physical relationships entirely. We can't take the risk of being hurt again.

This sounds a lot like accounts of sexual abuse to me.

Here are the facts: From the time I was 8 until I was 16, I had grown, old men inserting medical dildos into me twice a year, and then later once a year when I got older. I couldn't control it. I didn't know it wasn't for my medical benefit. I didn't want these things to happen, and they seemed absolutely inevitable, completely non-negotiable. I didn't know I could say no to a doctor. I didn't know a doctor could perform treatments that weren't for my health unless I went to them for that express purpose - like, for cosmetic surgery. I have felt that my experiences are not the same as "real" sexual abuse, though, because these things that have fucked up my life so much were done by men in white coats, with degrees, who took oaths to do things in the best interests of their patients. They didn't intend to hurt me. It simply couldn't be the same as sexual abuse.

But if it's not, then what do you call it? Ask perpetrators of sexual abuse if they abused somebody. There are scores and scores of individuals who insist that they didn't abuse anyone...they didn't say no, they were playing hard to get, they were just trying to get some, it was okay because they knew the other person really wanted it. These people do not think they are responsible for the overwhelming feelings of fear and trauma and worthlessness that accompany the abuse for the people they violated. They didn't mean to do that, so they didn't. Similarly, the doctors that did these things to me did not mean to traumatize me and make me feel sick and bad about what happened to me. They were just doing what they thought should be their jobs.

They didn't mean to do that, so they didn't.

But they did do it. Not meaning to do something, and not doing something, are two different things. People who don't intend to do something, sometimes do that thing. Doctors who didn't mean to abuse clients are not very different from any other person who caused abuse out of ignorance and misunderstanding. "I didn't mean to," does not invalidate what happened. It does not make everything better, and take away the hurt and fucked-upness that was caused. It does not excuse or change what happened. It does not make the doer unaccountable for their actions. If what happened to me was not abuse, then what was it?

I don't think I can accurately label my experiences as anything but abuse. Anything else fails to encompass the magnitude of how not-okay what happened was, and how much it's messed me up, and how completely unable to consent to what was going on I was.

I am going to try not to feel guilty about labeling my experiences what they were. It is okay.

As I said, I am having a hard time. I feel the gross, icky feelings more acutely and more often than I used to. I feel the tunnel-vision of fear and numbness and disbelief that this really happened to me. I feel sick doing ordinary things, going about my day, when I am triggered seemingly out of the blue. I want to go to bed early, to forget, to distract myself, to stop feeling so much. I want to hibernate in a cave of comfortable feelings that don't feel extreme, don't hurt too much, don't feel like much of anything. I just want to be safe. I want the safety I didn't have as a kid. I want to take back what happened, reverse those experiences, take those memories and crush them between my fingers, stub them out like they're worthless and not real and don't mean a damn thing to me, because fuck things like that that happen to people - I'm not dealing with that.

Mostly, I just don't want to deal with everything once the thawing finishes.

I am in therapy now, which is a good thing. I can effectively deal with these things as they come. I am privileged enough to have health insurance, and to have a support system who will make sure I get access to the therapy that I need. I am in a relatively good situation. But it's hard to be as grateful as I know I should be when I am still so resistant to the fact that I need to deal with this shit at all.

My experiences are making me think about the context in which experiences like mine have largely been viewed by the medical community. Intersex activism in the US started in the mid-90's, and in the UK a few years before that. Intersex individuals started national and international conversations about the ethics of intersex medical "treatment" that wasn't medically necessary, didn't track health, and left physical and emotional scars that intersex people had to deal with for the rest of their lives. Few long-term studies have been done on intersex individuals' satisfaction with their medical treatment, partly because clinicians are often unwilling to submit (former) patient lists to collect and analyze data in case their patients are unhappy with their treatment (Fixing Sex, 2008). They are sometimes afraid that dissatisfaction could result in legal action being taken against them, and the resulting loss of their practices. Sometimes, they also don't want to emotionally face the fact that they may have damaged their patients by providing unethical medical care when they meant to do the opposite. Intersex individuals that speak out against their "treatment" are viewed as a "vocal minority," that most patients are perfectly happy with the care they received since they're not complaining. But many intersex individuals state that their silence does not mean that they are happy with their care; many indiviudals are so traumatized by their experiences and feel so stigmatized about their bodies and what has been done to them that they cannot, or can only rarely, speak about it - publicly or otherwise. Silence is not acceptance. And for those of us who do speak out, our experiences are labeled as "anecdotal," since no studies show that that intersex people are largely dissatisfied with their treatment. Swing back around to the fact that most clinicians are unwilling to submit data on their patients to such studies. Circle around, rinse and repeat. Bang head against the wall. Do it again.

My experiences are not anecdotal. The lack of studies on the relationship between intersex "treatment" that does not track our health and how we feel about those treatments does not invalidate what I'm feeling right now. I don't care how few studies are out there - no doctor can tell me that I'm somehow hallucinating the reasons why I feel so fucked up right now. No one can convince me that my trauma, and my behavior as a result of that trauma, doesn't have everything to do with my medicalization. I burst into tears for a few seconds on the walk home, have to regroup in public, I feel overwhelmed about what happened to me, about the images that flash into my mind that I did not allow to be there in the first place. I am more aware of where I am spatially in relation to other people around me, whose distance to my self I more closely monitor with self-preserving distrust. I am not okay, and it is because of what happened to me in those medical examining rooms, and that is absolutely unacceptable.

I don't understand how people can listen to what we've been through, and see what has happened to us - and what continues to happen to children every single day - as anything less than a human rights violation. It's completely unethical. And I will not stop fighting to make sure that, someday, these awful things are viewed as what they are - as things that should not, cannot ever again happen, that violate our basic rights, our autonomy, and the human dignity that we deserve. My experiences are not anecdotal. They, like the experiences of so many others, are the reason why we need a change. We need a paradigm shift in how intersex is viewed - as not a medical condition, as a natural and healthy biological way of being, as something that is not rare or strange and needs fixing, but as a part of human biological variation that's okay and good and is here to stay. We need a paradigm shift in how non-medically necessary "treatment" is perceived - as wrong, as unethical, as violating basic consent, as something we must legislate against and fight to prevent from ruining the lives of other young kids who don't know what's going on and are just following the doctors' orders and their parents wishes and end up with feelings so fucked that sometimes they can't breathe.

We need these changes. And we need them now.