Sunday, July 18, 2010

Intersex "Treatment" Trauma and Sexual Abuse Trauma: Not So Different

I have been thinking about medical procedures and "treatments" intersex individuals are often forced to undergo without consent, and how they can easily be viewed as abusive. Specifically, many procedures are akin to sexual abuse.

In my own experiences, some doctor would feel compelled to check the length of my vaginal canal every time I vistited (every half-year for many years starting when I was maybe 10, and then every year until I was 14 or so). This meant that they would take a freezing-cold metal dilator, coat it with (medical?) lube or something that burned like hell (it was probably alcohol-based), and insert it into my vagina and held it for several seconds until I, of course, started to whimper, shout, tell him to stop, burst into tears, or all of the above. I did not know that I had the ability to deny consent to these vaginal-length-checks using the dilators. They were presented as a standard procedure, like listening to one's hearbeat, or opening one's mouth and saying, "Ahhhhhhhhhhhhhhh!" really awkwardly. I had no idea that these procedures did not benefit or track my health...they just tracked how likely a candidate I might be for one of several kinds of particular genital mutilation surgeries collectively called vaginoplasties, which would also not benefit or improve my health. It would only give me a reconstructed vagina, which may or may not have serious, deleterious health consequences, as I briefly detailed in a former post.

I was (and still am) outraged that these trauma happened to me and I wasn't told I had a choice as to whether I want it to happen or not. And I am still dealing with the aftermath. Sometimes, I have vivid daymares consisting of flashbacks of some of these dilation procedures, and the other stigmatizing parts of the appointments that followed before and after. It felt so dehumanizing to me, even as a young child, to have to change into the scratchy-ass nightgown, lay on the cold metal table, and live through these things done to me I so, so didn't want done. (Often, multiple times if they couldn't get a measurement the first time, after which I was berated for moving around and whining too much. Doc, you would do it, too, if you knew what that felt like.) But, as intersex individuals, we're taught not to talk about our intersex or any issues surrounding intersex with others, oftentimes preventing effective dialogue even among our closest family members and ourselves. So I didn't discuss it out loud, but I felt that these procedures were abusive. I felt really guilty about feeling this way, because I was clearly taking up space I didn't need to. I wasn't "really" abused...abuse was for individuals that were touched, prodded, and traumatized under entirely different circumstances, right? If there was an old white dude in a medical coat present, it wasn't really abuse, was it?

Emi Koyama, intersex activist and founder of Pacific Northwest's Intersex Initiative, created a booklet entitled, Introduction to Intersex: A Guide for Allies (2nd Edition). On page 2 of the booklet (or page 5 in the Adobe PDF), she explains the following:

"One of the biggest problems with this "treatment" is that it sets in motion a lifelong pattern of secrecy, isolation, shame, and confusion. Adult intersex people's stories often resemble that of those who survived childhood sexual abuse: trust violation, lack of honest communication, punishment for asking questions or telling the truth, etc. In some cases, intersex people's experiences are exactly like those of childhood sexual abuse survivors: when they surgically "create" a vagina on a child, the parent - usually the mother - is required to "dilate" the vagina with hard instruments every day for months in order to ensure that the vagina won't close off again."

I would expand on this to include forced dilation at any interval during "treatment," and not restricted to those post-mutilation surgery. This is definitely how I feel about my experiences.

Koyama continues:

"Even so, many intersex adults report that it was not necessarily the surgery that was most devastating for their self-esteem: for many, it is the repeated exposure to what we call "medical display," or the rampant where a child is stripped down to nude and placed on the bed while doctors, nurses, medical students, and others come in and out of the room, touching and prodding and laughing to each other. Children who experience this get the distinct sense that there is something terribly wrong with who they are and are deeply traumatized. "

I have not experienced this, but can easily see how being publicly ridiculed would be traumatizing, and how one's emotions while/after being touched and prodded against one's will may be akin to those of childhood sexual abuse survivors.

This post is a major bummer, but I'm not sorry, because I believe that negative feelings, when properly channeled, can be used as vehicles to initiate positive change. If you're outraged, there are lots of conversations to be had with those that don't know about intersex issues, e-mails and letters to write, lots of protests to organize, lots of petitions to create and sign, lots of books, zines, art, and music to make and support that raise awareness and try to change these medical abuses. I always must remind myself that it is okay and healthy to allow oneself to experience negative feelings, but if it just stops there after my own negative feelings have passed, will they be gone for good if the social systems and problems informing them still exist? If my own feelings are resolved for the moment, is that justification to stop fighting for others still experiencing pain and trauma? I don't think so.

Koyama states " is estimated that five children per day continue to undergo the medically unnecessary and irreversible surgeries in the United States." These five (plus?) children a day are worth fighting for. We just have to go out and actually do it.


  1. As to the dilation - back in the 70's and 80's it was at least once a day, every day -

    "Mommy's (daddy's)only doing this because they love you" -

    would be the accompanying routine.

    That eventually transformed to a dilation every hospital visit under an anaesthetic.

    Each year the child grows bigger - so does the dilator.

    Anyone who says it isn't/wasn't sexual abuse is arguing parental or medical motivation - not the experiences of the completely dis-empowered and unwilling child!

  2. It's absolutely heartbreaking, since many parents probably think this is the equivalent of giving your child soup when they're sick. But the difference is we're not actually sick and the soup makes your body hurt and you feel demoralized after, every time. Especially, as you had stated, children cannot consent and are not empowered to make choices in their own best interests. Parents learning they are implicit in their childrens' traumatic experiences of abuse would have to be horrifying. Genital mutilation surgery then, harms not only intersex individuals, but groups of loved ones, such as family units, too.

    Parents shouldn't have to give their children this kind of "care" like this since their children don't have anything wrong with them in the first place.

  3. This terrifies me. I work in childcare and from every course I've taken and logical thought I have about child abuse, there is no doubt in my mind that that is exactly what this is. Yuck. I can't believe how naive some parents are in allowing doctors to make that decision for their child and to torture their child like that. If the thought of something makes me feel sick to my stomach I am not going to agree to let someone do it to my child.

    All I can say is I'm so glad my baby will never have to go through any of that. I'm sure he'll have enough stigma with his condition, but he won't be tortured by doctors and his parents, and have his rights and ability to make decisions about his own body taken away.

  4. Hi, Britt! I definitely agree that such "treatment" intersex individuals received is not in the individuals' best interest. I think it's worth noting that many parents who consent to their children undergoing surgery, examinations that don't track health, medical display, etc. feel that receiving "treatment" IS in thier child's best interest. As a society, we're taught that intersex is a medical problem that needs to be fixed. Paired up with our society's overwhelming deference to clinicians in making treatment decisions, parents often feel that trusting medical opinion will help their children. I truly believe parents have excellent intentions for their children, and want nothing more than to ensure their children are as safe and happy as possible. But I don't believe that good INTENTIONS result in good DESISIONS that are in the individual's best interest. Parents might feel that trying to prevent teasing at school, uncomfortable questions by relatives and babysitters, and ensuring the abiltiy to have "normal" sex someday (= heterosexual penis-vaginal intercourse) means they're making good decisions for their child. But the fact is, no one will have any idea if their child will actually be happy with any of the decisions made for them, without their consent, until they're old enough to understand and voice their own opinions. Intersex individuals may never be teased in school, largely because many experience acute shame, secrecy, and stigmatization conditioned by their medical experiences, preventing them from ever talking about it. Individuals - whether they're intersex or not - may not wish to have penis-vaginal intercourse. Addtionally, individuals may experience painful sex, reduced ability or inability to orgasm or feel sexual sensation, and shame about their gentials post-"treatment." When parents make such decisions, I strongly argue that they are not in the child's best interest, and that such treatments should not be performed unless an individual consents to them whey they understand their implications.

    Additionally, parents that want to make good decisions often don't get good guidance - or any guidance - in making their decisions. Clinicans don't always give all the information one may need to make a truly informed decision. Parents don't always know what to ask or where to go for information if their doctors aren't helpful. Our socio-cultural ideas don't help much, since few individuals know that sex, gender identity, gender roles, (including gender presentation and gender performance) sexual orientation, etc. are not necessarily related to one another at all. Parents are often also put under time constraints by clinicans to make decisions too quickly with too little information, and stress and worry can cause parent to make less-than-optimal decisions.

    I think it's absolutely wonderful that you are choosing to raise your child in his beatiful, natural form, and allow him to consent to what is done to his body. (ESPECIALLY since these are cosmetic issues, and not actual health issues.) I also feel that parents - as well as doctors - who subject children to such traumatic practices aren't necessarily idiots at best, and villanious caricatures at worst, who knowingly torture kids for their own selfish reasons. I think that most of these people feel they're truly helping kids, but there is not a lot of information out there suggesting that this is the case. This is one of the reasons that medicalizing intersex is so tragic.