Monday, July 26, 2010

Intersex Goes On The Road (Or, Why I Can't Answer My E-mail)

Hi, everyone! I'm currently not in my home country, the USA. I've had regular access to Teh Internets throughout July, but I will have intermittent Internet access through August. I probably won't be able to post (much?), depending on the situation, but know that I'll have lots to say when I return in September.

Some updates about which you'll receive more information in September:

1) I am helping to organize an event for Intersex Awareness Day in New York City, on October 26th. Stay tuned for more information! If you're interested in learning more or getting involved, just e-mail me at full.frontal.activism@gmail.com.
2) I am currently working on several book projects relating to intersex. One is finished (YAY!), one is alllllllmost finished, and the last is a community activist project that's just starting up. If you are an intersex individual interested in sharing your thoughts on chosen topics, we'd love for you to contribute! Please e-mail me at the above address for more information.

Thanks for all your support reading so far! <3

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 "...it 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.

Saturday, July 17, 2010

Patients' Rights Violated?

Advocates for Informed Choice (AIC)is an awesome organization that "...is the first organization in the U.S. to undertake a coordinated strategy of legal advocacy for the rights of children with intersex conditions." They seem to be doing lots of fantastic work. Go, AIC!

While perusing their site, I found some highly disturbing news in their "recent tweets" section.

This news is contained in a letter AIC wrote to the Director of the Office for Human Research Protections. AIC states that NYC physician Dix P. Poppas, Doctor of Urology at New York Presbyterian Hospital and Weill Cornell Medical Center of Cornell University, may be performing "follow-up tests" to intersex individuals receiving a type of genital mutilation surgery called nerve sparing ventral clitoroplasty. This type of surgery, then, would remove those apparently horrible, freakish enlarged clitorises, but preserve nerve functionality, allowing individuals to receive some genital sexual pleasure. (Or, you could just not do the surgery and allow these individuals to have genital sexual pleasure anyway! Just sayin'.) The problem with these follow-up tests is two-fold: 1) these tests may or may not have been approved by the Institutional Review Board, or IRB - the organization concerned with approving any research involving human subjects, with ethics in mind; and 2) whether or not the tests received IRB approval, they are of questionable ethics at best.

Here's an excerpt from the document, as follows. Please note that this excerpt may be triggering to some individuals.


"In a published paper, Dr. Poppas reports employing an unorthodox technique of applying medical vibratory devices to the genitals of girls and young women ages 5 to 24 years old to collect data on post-operative clitoral sensitivity.1 Poppas’ 2007 paper in the Journal of Urology details the procedure of stimulating the girls’ clitorises with “medical vibratory devices” while the girls are conscious. More specifically, the girls are subjected to annual visits in which Poppas touches their surgically modified clitorises with a cotton-tip applicator and/or with a “vibratory device,” and asks them to rate the sensation they feel on a scale of 1 to 5. Using the vibrator, he touches on their inner thighs, labia minora, and the introitus of their vaginas. My colleagues and I are unaware of any other clinician using this technique. Further, Poppas also reports performing “capillary perfusion testing,” a technique in which the physician presses a finger nail on the girl’s clitoris to observe blood flow as a sign of healthy tissue. Dr. Ken Zucker, Psychologist-in-Chief and Head of the Gender Identity Service in the Child, Youth, and Family Program at Tornonto’s Centre for Addiction and Mental Health and Professor with the Departments of Psychiatry and Psychology at the University of Toronto, has publicly responded to this report by stating, “Applying a vibrator to a six-year-old girl’s surgically feminized clitoris is developmentally inappropriate.”2 Given the well-documented psychological harm that can come to girls with DSD as a result of excessive visual genital exams,3 it seems likely that Poppas’s far more invasive tests pose substantial risk of psychological harm to young girls."
(Emphasis mine)


I don't care if the vibrator is a medical vibrator or not. This kind of "treatment" cannot be consented to by individuals as young as 6 years old. If Poppas really wanted this kind of information, a survey would be more appropriate once individuals were sexually active. And if surveys were used, one would obviously not administer one to a 6-year-old, since the 6-year-old would be highly highly highly unlikely to be engaging in consensual sexual relationships. If one would not administer a survey to a 6-year-old, then, why would it be appropriate to perform vibrator tests on these children? For individuals of all ages "tested," though, it is not difficult to imagine how this procedure could definitely be traumatizing.

To repeat, however, one's sexual function wouldn't be risked IF THE GENITAL MUTLATION SURGERY WASN'T PERFORMED AT ALL.

My whole being aches thinking of the questions, memories, and feelings some of these individuals - and some of them quite young, too - may have later after undergoing what could very easily be viewed as unethical medical practice. Even if Poppas is performing these practices with good intentions by his own perspective ("I want to see if my technique is working!") it is difficult to justify that these follow-up procedures are in the PATIENTS' best interest. Are these types of procedures worth risking possible emotional and psychological trauma for these individuals?

I feel so sick after reading this.

Friday, July 16, 2010

Intersex Is Entertaining!: Juno

"Intersex Is Entertaining!" is going to a semi-regular segment where I can post about mentionings in the entertainment industry that serves to further stigmatize, fetishize, freak-ify, etc. intersex folks. If I find any *positive* depictions of intersex individuals in the entertainment industry, then I'll have to think up a name for a new segment, since this cheeky one wouldn't do.

I was violently ill yesterday (wah, wah, waaaaaah.) In between bouts of my vomit-a-thon (TMI?), I watched Juno since it was on my friend's computer and it was there. Sometimes painfully twee dialogue aside, I remembered really enjoying the film, so I was pretty excited to watch it. I got what I came for, and ended up enjoying the majority of it. (Even if the dialogue was even MORE twee than I remembered - !)

I caught something this time around that I didn't the first time I watched it. Check out this bit, when Juno is talking to potential-adoptive-parent-of-her-child, Mark:


Mark: "Wow, can you tell if it's a boy or a girl?"
Juno: "Um, I can't, the doctor can. But, I kind of want it to be a surprise."
Mark: "Well, it can only go one of two ways."
Juno: "That's what you think. I mean, I drink tons of booze, so you might end up with one of those scary neuter babies that's born without junk."
Mark: "Junk, huh?"
Juno: "Yeah, you know, its parts."
Mark: "I know what junk is."
Juno: "Yeah, right."
Mark: "We definitely want it to have some junk. Please."


My mouth dropped open slightly and I played the scene again to make sure I'd heard correctly, because there were a bunch of fucked up things in there.

Now, I admittedly don't know a lot about Fetal Alcohol Syndrome (FAS) (i.e., "I mean, I drink tons of booze..."), so I did some Google research to learn a bit more. Do infants born with FAS completely lack genitals (i.e., "...babies [that are] born without junk...")in some cases? Not that I have found so far. Some individuals born with FAS may have "incomplete development of genitalia" or so-called "gential defects," but what does this really mean? I couldn't find any more specific information that this doing a preliminary search, but there's no explicit mention of individuals being born without genitalia.

What I immediately thought of when I replayed the scene and listened in was MRKH. MRKH stands for the names of the medical doctors (Mayer, Rokitansky, Kuster, and Hauser) who described "...the congenital absence of the vagina, fallopian [sic] tubes, cervix, and uterus." If you'd like more information on MRKH, visit MRKH Organization, Inc., and check out common physical traits (I refuse to say "symptoms") associated with it. MRKH doesn't completely fit Juno's no-junk standard, since individuals with MRKH do possess external genitalia that exhibit typical form.

My next thought was Aphallia, where individuals are born without penises and urethral openings, although they possess scrota and other sex organs indicative of "typical male anatomy." (I don't like that ISNA uses "patient," and not "individual" in their definition, though.)

Whether Juno is actually referring to individuals' "genital defects" from Fetal Alcohol Syndrome, individuals with MRKH, or individulas with Aphallia, calling individuals neuter children is incredibly offensive. Diablo Cody, the screenwriter for Juno really needs to re-examine whether one's genital form means that they don't have any sex at all, and whether it's okay for individuals to both joke about those freaks with the fucked-up genitals and assume that they have the right to choose how these individuals identify. And, once again, this comment essentializes individuals' sex to their genital form, even though we know that biological sex is much more complex than that.

Moreover, no - sex doesn't "...go only one of two ways." That simply isn't true, and not accepting this fact legitimizes the marginalization of intersex individuals. Nice.

If you want to contact Diablo Cody on her problematic views, you can try contacting her representative (agent?) at WhoRepresents?.com. Unfortuantely, you have to pay a fee for it, which is why I'm not just posting the contact info here for you, since I don't have it, and it's not available by doing simple web searches. (I tried, Dear Readers. I really did.) Too bad we can't use our hamburger phones to contact Cody directly, huh?



"Heeeeeeey, Cody. I'll give you ten tons of Sunny D if you don't misrepresent individuals with atypical genital morphology as yucky monsters in your future screenplays, okay?"



Just sayin'.

Sunday, July 11, 2010

Intersex Bingo

I think this bingo card says it all. Print it out and have some subversive fun! (To mix it up, just cut up some cards and paste each block in a different place so that all your bingo cards are different.) Great for both daily interactions, doctor's appointments, and conferences!





I may make more of these in the future. I'd also love to hear your words & phrases if you make some of your own! :)

Caster Semenya Receives (Some) Justice!

Caster Semenya has been approved to compete in South Africa!

All in all, though, this bandage doesn't justify that this shitty situation occurred. In the article linked to above (reblogged courtesy of OII's Intersex News), it states that Semenya received "an undisclosed 'financial settlement' for her ordeal." It's really problematic to take the stance of, "OH HEY! We're going to publicly announce information to the world that's none of their business and create and media frenzy and force you to submit to tests without consent unless you want your medal ripped away from you. BUT! We'll give you money at the end, and that'll make it alllllllll better. Human rights violations can be solved with the almighty green!" That's absolutely shameful.

One good thing is that the medical records are not going to be released. The discourse surrounding this, though, is similarly problematic. Check out this excerpt, from the article linked to above:



But nothing was stated flatly about Semenya — rumoured to be a hermaphrodite, meaning she has both male and female sexual organs (though the second set of genitalia could be internal) — being a female, full stop. Medical details will not be released.

“Why should they be out there?” Semenya’s lawyer, Greg Nott, told South African television last night. “Would you like your sex records to be made public?”


Ohhhhhhhhh. Right. It's okay if we shout to the world, "THIS PERSON MIGHT BE A FREAK!" and that's acceptable, but releasing her medical details would be going too far. It's not like they're BOTH unacceptable or anything. Ah, sweet justification!

In general, this article, written by DiManno for Toronto's The Star, has problems with it, too. DiManno apparently can't write about Semenya's stigmatizing and likely traumatizing experience without sticking a line in there about "...what may or may not be between her legs." Way to be reductionist. Intersex is only about external genitalia! We're really just walking genitals (that look fucked-up and weird and THAT'S BAD)! Ugh. And, "What she has clearly felt, all these long months, is embarrassment, as the most intimate details of her being were debated around..." etc. DiManno isn't actually in a position to state what Semenya has "clearly" felt, since this isn't a direct quote from Semenya herself. How can DiManno know what Semenya has actually experienced? She has not lived her experiences, and she therefore can't clearly know anything about this. All individuals - whether intersex or not - cannot know what Semenya has experienced. Only Semenya can, and to state otherwise with such confidence discredits Semenya's experience and does not allow her the agency to tell us how it REALLY is for her.

Other news states that due to all of the testing and detainment, Semenya's performance might be affected since she hasn't had proper time to train. Worse, the conjecture that hormone treatments could also affect her performance. (Which in reality, Semenya may or may not have "needed" to be able to compete in the next summer Games. This isn't something that can be assumed with confidence, either.)

Finally, I want to note that there was a plethora of articles and videos stimgatizing Semenya. Conversely, when Semenya was approved to compete in South Africa, it was comparatively reported in a whisper in relation the sonic boom of sources musing, "OMG IS SHE REALLY A DUDE OR A LADY OR WHAT?" before. Why has the media not latched onto this better news in the way that they were so quick to disseminate the violating news?

Thoughts?

Friday, July 9, 2010

OII, You Read My Mind!

Remember how I recently posted why the term DSD is really problematic? Well, the Organisation Internationale des Intersexués has a fantastic page addressing well-deserved grieveances with the term DSD. Additionally, they have a more extensive page discussing the roots of this problematic issue with Alice Dreger and the Accord Alliance. These sources should be required reading!

And if I may, my feelings in graphic form, from OII's second source:



Rock on, OII!

Tuesday, July 6, 2010

Will Patient Disclosure Fuck Me Over?

Ever since I discussed the Hypospadias conference, I’ve been thinking a lot about doctors in general. One thing I’ve realized is that I have a peculiar relationship to all doctors – not just the ones who “treated” me for my intersex. I just want to throw these ideas out there to see if other intersex individuals feel similarly, because to my memory, I’ve never heard it discussed before.

I remember once in 11th grade, toward the end of the school day, I began experiencing really severe abdominal pains. I thought, “No, no, I’ll be fine. I just have to tough it out,” but I was worried. I knew it couldn’t be menstrual cramps, since I biologically can’t do it due to my specific form of intersex, complete androgen insensitivity, or CAIS. (I don’t a uterus, ovaries, Fallopian tubes – the works. It just never developed. See one of my earlier posts if you’re curious how this works.) I also knew I still had my appendix, and I had been worrying whether I would have to get operated on, since I saw several classmates make the trip to the hospital in the last few years. When the pain persisted for over a half-hour, I thought, “Ah, shit,” and called my mom to come pick me up. She arrived frighteningly promptly and broke the speed limit pretty much the entire way to the hospital. My troubles didn’t really begin, though, until I was already inside, in my gown, on the examining table, with a doctor present.

He did the normal poking and prodding and asking me if this hurts or that, and asking if I was pregnant (Doc: “Are you absolutely positive you couldn’t be pregnant?” Me: “Yes. Yes, doctor, I am.”). Then he said, “You know, you might have a problem with your ovaries. I think, to be conservative, we should do a pelvic exam.” I think my face probably turned white because I suddenly felt weak and slumped down a little onto the table. “Uhh…are you sure that’s necessary? Aren’t there other things it could be?” “Yes, it’s possible, but see, your appendix isn’t the problem. If it isn’t appendicitis, the most usual thing we see in young ladies (Me: *chortle*gag*chortle*) your age is something in the reproductive system.” I paused for a moment. I couldn’t think of any easy way out of this. It made sense, if what he said was accurate. “Um, uh, oh yeah. I guess.” The doctor smiled. “Well, okay then, just change into this dressing gown,” – he reproduced some itchy thing with no ass covering – “and then we can get started.” Get started…ugh. I needed to get OUT of there. Instead of changing, I called my mother in the room and frantically relayed to her what was going to happen. “Oh, no,” she said, eyebrows furrowed, “he is NOT going to do that. He can try other procedures, but we both know that’s clearly not the problem. He can do something else.” And then my mother talked to the doctor, and he reluctantly let me just sit on the examining table until I exhibited any other changes that might help him make a diagnosis. (There weren’t any – except one serious fart-attack. Yep, I had too much gas in my intestines, and it was making me feel like I was going to die. Also, yes, I AM extremely classy – thank you for noticing!)

All right, so what does all this have to do with intersex? He couldn’t examine my internal pelvic organs because I didn’t have them. So what?

My point is that I am terrified of new doctors learning about my intersex, because I’m afraid that if they find out, something bad will happen.

Part of this is how intersex individuals are conditioned to think and behave by the medical community themselves. I was always told that my intersex was private, secret, something I might be made fun of for. That people wouldn’t understand, and that it wasn’t something I should share with others. (What the majority of intersex individuals hear? Something like, “Your condition is shameful, so you should be ashamed of your condition and you should be ashamed of yourself. You are shameful. Keep your mouth shut and spare everyone the messy details of the freak show you are.”) We become so used to the idea that our intersex must be concealed at all costs that we withhold this information from other medical professionals. Almost every time I have had an appointment, I have always lied and said my last period “around the first of the month,” and that I menstruate regularly. When medics ask if I have been taking any medicines regularly, I have always shaken my head and said “Nope!” as brightly as I could, hoping they wouldn’t see through my lie. If asked if there are any medical conditions or extenuating circumstances they should be aware of, I never answered affirmatively. I am always afraid that if I disclose my intersex status, the doctors will demand a battery of tests be performed, or that they’ll decide to alter my genitalia after all, or that they’ll force me to see a gazillion specialists who will forever poke and prod me and erode my dignity away. In these situations, my mind conjures worst-case scenarios. I wonder, what if I don’t tell them I’m taking [pill]? What if they give me something that reacts badly with it and I die? I could’ve saved my life by speaking up. Or, alternatively, if I speak up, will a Bad Thing happen? I wonder, what if I don’t tell them I don’t have internal sex organs before surgery for something totally unrelated to my intersex? Would they simply question me about it when I came to, or would I wake up with an artificially elongated vaginal canal without my consent?

These scenarios are really extreme, and would likely never happen. I’m informed enough now to know that I have rights as a patient, and I’ve developed a pretty brazen personality that wouldn’t stand for such bullshit now anyway. But I’m still afraid, and I’m not convinced that variations on these scenarios – even if not as extreme – have not happened to other intersex individuals. Part of my fear, then, is also due to my mistreatment by the medical community. It’s been proven to me countless times before that not all the medics I’ve encountered are concerned with either my best interests or my consent. I’m reluctant to give medics any reason to suspect that I’ve got something they might think needs “fixing.” Alternatively, I’m afraid that if I don’t come clean, I might be leaving out information that will maybe negatively affect my health. In the vast majority of situations I don't think this would ever be the case, but it's still something I think about. On top of it all, I'm also just sad that some professionals we're supposed to be able to trust with our lives are undeserving of our trust, and so it's necessary to be vigilant to advocate for ourselves.

Do any of you feel similarly?

Monday, July 5, 2010

Happy 1st Birthday, Full Frontal Activism!

It's been a whole year already. Can you believe it?

There is so, so, so much that I want to talk about, so there's no danger of this blog ending anytime soon. ;)






To celebrate, share with me a slice of rainbow cake! (Well, a virtual one, anyway...sorry.) For those intersex individuals that ally themselves with the queer community, then yay for rainbows! And for those that don't, enjoy the pretty colors anyway!

Thanks for reading, all of you! Here's to another great year to come! :)

Sunday, July 4, 2010

Freedom for All?

Hey, everyone! In the US, it's Independence Day. I just think it's important to remember, though, that not all individuals in the US (and everywhere else) are free to live with their own agency, and are stripped of their basic human rights. This applies to intersex indviduals, those with more fluid sex and gender identities, and importantly, all minority individuals being oppressed for a wide variety of reasons.

Just wanted to throw that out there. Here's hoping that activist efforts will change our system to protect the rights of ALL living beings, and not only those in power and those like them.




John Lennon Wall, Prague
Courtesy of Democrary Cell Project



Isn't that what real freedom is all about?

<3

An Intersex Individual By Any Other Name Would Smell Like A Human.

Or something. Right? I'm pretty sure Billy Shakes said something darn close to that. (Controversy surrounding who wrote what Shakespeare works aside, of course, since that's something that's miiiiiiiiiighty lateral to what I want to REALLY talk about!)

I've noticed that the Accord Alliance - started up by the former founder of the now-defunct Intersex Society of North America, Cheryl Chase - advocates the use of the term "disorders of sexual devleopment" (or "DSD") in place of the term "intersex." The earliest use of this term is in the Journal of Pediatric Urology by Hughes et al., 2006, in an article entitled "Consensus statement on management of intersex disorders." I don't have access to the entire article, but I can get you the abstract. Basically, the authors of this article feel that "disorders of sexual development" is a better phrase than "intersex" because it "...integrate[s] progress in molecular genetic aspects of sex development..." Okay, okay. I get it. Because we know that various genetic, anatomical, and physiological sutes possessed by intersex individuals are caused by molecular processes intiated in fetal development, using DSD might be a better choice. And it's important for all professionals to switch to DSD because standardizing language is essential to communicate effectively, and blah blah blah. Let's dissect this argument a little bit, shall we?

"Intersex" is definitely a term with many problems. "Inter" and "sex," when paired together, create an image in my mind of taking a female form, and taking a male form, and then violently mashing them together, until you end up with an individual that's BOTH! They're INTER - SEX! Get it? This is obviously not how it works, so discussions regarding the creation of a new term to replace "intersex" are great and really important.

I don't think "disorders of sexual development" is it, though, for two reasons. My first objection is rooted in identity. DSD focuses on the science-y things, yes, but it is problematic for those that identify their sex as intersex. If I were to say to someone, "I'm intersex," yes, I wouldn't necessarily expect them to have heard this term and what it means and maybe confuse it with a lot of other words regarding sex and gender identity, performance, presentation, etc. If DSD is universally accepted and replaces "intersex" entirely, then what would I say to someone? I think it would go something like this:

Me: "I have a disorder of sexual development, or a DSD. [lengthy explanation]"
Individual A: "Oh, well, what do you call yourself?"
Me: "What do you mean?"
Individual A: "Well, you used to identify as 'intersex,' and not as biologically male or female. If you accept the use of DSD, how would you identify?'
Me: "Oh, um...I'm...disordered?"

This is not how I choose to identify. There is a big difference between recongnizing that my development was atypical, and that it was "disordered." One can wave their hands and quickly reassure me in soothing tones that disordered is just in terms of the science, and that of coure I MYSELF would NEVER be considered disorded (to which I'd ask in less soothing tones "So, why was it that those doctors forced all of those vaginal dilations on me again?"). But "disordered" absolutely has a negative connotation in the majority dialects of Western speech. (I'll allow that this might not be the case across the board.) If there's anything we don't need, it's more stigmatization of intersex people. Haven't we had enough of being subtly or blatantly regarded as grotesque, malformed, monstrous spectacles?

Many intersex individuals do choose to identify as biological males, or biological females. That's perfectly fine, and I think it's great if that is how they identify! However, I think this new terminology is problematic for those of us that don't identify as biologcial males or females.

My second contention is that this terminology does not - and cannot - reflect all of the varied ways an individual may choose to identify. This term was embraced by and, in part, created with the help of the Accord Alliance, which included Intersex Society of North America founder Cheryl Chase (who probably does not identify as "disordered"), yes. But can Chase and other intersex individuals consulted speak for each INDIVIDUAL that has a "DSD"? Should we allow for a term that is not inclusive, and forces some individuals to identify in a way that is not authentic to them?

Should we condone DSD, formerly known as intersex?







What do you think?

Human Rights Violations: Best Paired With Fancy Chocolates?

Well, it looks like plans are already in the works for the IV World Congress on Hypospadias and Disorders of Sexual Development in Norwich, Britain. Oh, joy of joys!

Just to refresh your memory, the III World Congress on Hypospadias (which I previously posted about it here) featured several days of doctors discussing how best to "treat" intersex individuals (who clearly must be fixed), the newest methods to most efficiently perform genital mutilation surgeries (ahh, technology!), and mutilation tutorials, where SEVERAL INFANTS WERE ACTUALLY MULTILATED AT THE CONFERENCE FOR OTHERS TO WATCH. Condoning these discriminatory views and barbaric practices is completely unacceptable, and it saddens me that the conference will take place another time.

If you click on the first link and check out the website, it looks more like an invite to vacation in Norwhich than to attend a conference. Yes, the left-hand side of the main page mentions discussions, presentations, and pros-cons debates, and how important this conference is since it addresses "such a challenging subject." (I don't really see how intersex individuals pose such a challenge. It really isn't that difficult to see us as just people, and let us live our lives without either potentially altering and/or lopping off our body parts, or potentially providing misinformation to us and our loved ones about how to "manage" us. It can really only be difficult when your view is, "OMGWTFBBQ! WHAT DO WE DO WITH THESE *cough*freaks*cough*, UH, PEOPLE! WE CAN'T DECIDE WHETHER THEY'RE "REALLY" MALE OR FEMALE USING ARBITRARY GUIDELINES, BECAUSE THEY OBVIOUSLY SHOULDN'T BE GIVEN THE AGENCY TO HAVE A RIGHT TO THEIR BODIES AND CHOOSE HOW THEY IDENTIFY!") But look to the right, and you'll see an entire section on fancy, touristy things to do in Norwich. It lists a Chocolaterie, places to shop for gifts ("Susie, look what Uncle Johnny bought you when he went to slice people up from London for their own good!"), Norman castles, and pubs. But, what do the "picturesque landscape of marshes and fen" have to do with the medical institutionalization of engaging in human rights violations? Does anyone else find it a bit upsetting that hundreds of individuals lives will be ruined after this new conference's proceedings, while the physicians are encouraged to "...extend your stay and invite your friends and family to join you. Do take this opportunity to visit this lovely area."? Does this conference really have intersex individuals' welfare at the forefront, or the physicians' digital cameras, some which will undoubtedly be filled with pictures of their smiling children eating pie and mash...children who could have easily been operated on by these same physicians, had they been born to other individuals, and possessed a different anatomical, genetic, and/or physiological suite?

The conference is also telling in the "Who Should Attend" section. Those cleared for attendance include doctors of various specialties, social workers, genetic counselors, and mental health professionals. Glaringly absent from this list are INTERSEX INDIVIDUALS. Is it not logical that if one is interested in making decisions regarding intersex people, that INTERSEX PEOPLE should be involved in the decisions that will affect them? More logical yet, shouldn't each INTERSEX INDIVIDUAL be allowed to make decisions about their bodies and their identity FOR THEMSELVES, without these things being dictated by doctors who very likely are not intersex themselves, and cannot relate to the wide variety of life experiences intersex people have had? WHY SHOULD INTERSEX PEOPLE "NOT ATTEND" THE CONFERENCE?

This conference does not yet list whether or not live genital mutilation surgeries will be performed at the conference like last year, or whether The Accord Allicance - supposedly an organization advocating for the health of intersex individuals - will sponsor them, in part. Let's hope that these things don't happen.

Regardless, if you are outraged that medical and psychological health professionals feel entitled to make decisions about things only each individual should be able to make for themselves, then feel free to http://www.ishidcongress2011.org/contact.asp#ishidand give some suggestions on how to improve their conference. (Like, you know, not having it.)