Saturday, July 17, 2010

Patients' Rights Violated?

Advocates for Informed Choice (AIC)is an awesome organization that " 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.


  1. The problem with people like you is that You want to make an intersex condition into a sexual orientation and gender identity issue. It's wrong that your trying to turn intersex into some sexual orientation/gender identity instead of leaving it alone as a medical condition.

  2. I'm sorry you feel that way, Anonymous. Unfortunately, you are incorrect.

    Actually, if you read through the rest of my blog (which isn't so long at present), you'll see that I actually say many, many times that intersex is COMPLETELY SEPARATE from sexual orientation and gender identity. One's sex DOES NOT need to match up with their sexual orientation, gender identity, presentation, peformance, or anything else according to arbitrary standards.

    So, I agree with you on that part! Lumping all these things together is totally misguided. This is why I do not do this, and advocate that everyone may identify however they choose with regard to all of these categories and more.

    But I strongly disagree that intersex is just a "medical condition" that needs to be "treated." These ideas have been spread because, unfortunately, many people are uncomfortable that intersex individuals exist, and pathologizing our intersex. Our bodies may not be typical in all ways, but that doesn't mean they need to be fixed. When intersex is turned into a "medical condition," however, and not just accepted as natural variations on how one's body can be, it gives medics the leeway to submit intersex individuals to traumatic, stigmatizing, often unhealthy, and UNNECESSARY procedures, including genital mutilation surgeries. Although these medics by and large may feel they are helping us, we don't need to be fixed. We are fine the way that we are. The problem, then is not that we're these weird freaks in need of going under the knife. The problem is that we're NOT werid freaks and DON'T need to go under the knife, but others feel that we do. It's a problem of perspective by the medical community that's spread to the rest of mainstream society. It's not a problem of our being alive with hormone levels, bone structure, muscle structure, body hair distributions, external genital form, internal sex organs, hormone types and levels, etc. that really don't hurt anyone else and are fine left just as they are.

    So, intersex activism is not about intersex being a "medical condition" or not. Some intersex individuals are comfortable identifying as females or males with a condition, and that's fine. And others identify their sex and intersex, although this seems to be more uncommon. Intersex activism is really about generating awareness so people mistakenly take us for weird freaks, and about ending stigmatizing, traumatic, unnecessary medical treatment of intersex individuals.

    I hope this clears some things up! If you're interested in some Intersex 101 information, there's a great book by Emi Koyama - an intersex activist and founder of the Pacific Northwest's Intersex Initiative - called "Introduction to Intersex Activism: A Guide for Allies." I highly suggest you take a look at it.

  3. As an Intersex person, I am not happy or even comfortable of being lumped with the LGBT crap and I think that it send the wrong message to parents of intersex kids and babies. Lumping intersex people with the LGBT community, scares parents of intersex kids and babies. It makes parents of intersex kids and babies so scared that they forcibly put more harm on the intersex kids and babies than good.

    See that's where the problem is. It's people like you who think intersex is a sexual orientation and a gender identity. You completely erased the medical aspects of having an intersex condition and turning what is just a medical condition into some sexual orientation/Gender Identity that anyone can claim with out independent verification.

    I think your wrong and totally off base on the intersex activism. The fact is that your wrong about it and that Intersex people are not fighting the same rights that you think they are fighting. Intersex people are fighting to be left alone and left alone to recover from the surgical and medical abuse that has been done to us as a child. The problem is that you people seem to think that intersex people or even that matter the intersex community can be used as a base for you social and political agenda.

    The problem with the Intersex community from where I see it, is that they are not treating themselves like a medical condition. They are not treating themselves like a medical condition and have to wonder why other conditions such as Autism and Breast cancer get more public support and funding for research than intersex conditions do. The intersex community is treating themselves like a sexual orientation/gender identity instead of a medical condition. The problem with that is, that it sends the wrong message and the wrong signals to parents of intersex kids, babies and even to society. That's why you people make intersex people hard to live and exist because you people make society assume that intersex people are part of some transgender thing.

  4. If you don't want to lump yourself with "LGBT crap," you don't have to. Some intersex individuals feel an affinity with the LGBT community, and others don't. It's fine either way.

    Some individuals that are intersex identify as male or female. Others identify as intersex. It's fine either way. Those that identify as intersex are not "bringing the movement down." We're not the enemy of "real" intersex people who "really" understand the goals of intersex activists. I am pretty clear on what intersex individuals are fighting for - awareness of who we are, and to end genital mutilation surgery and other harmful, traumatic medical practices. I'm not fighting to erase male and female identities. I'm not fighting for intersex people to be part of "some transgender thing." Transgender and intersex are totally different issues. I think you need to educate yourself about this. I am simply saying that ASIDE from the goals of the intersex movement, it is a fact that intersex individuals may identify in different ways, and this is okay. There is no harm in identifying as male, female, intersex, or something else. Each person should have the agency to identify as they want to, to describe who they are to the rest of the world. One person does not get to police others' identities. As an intersex person, you still do not get to speak for all intersex people - each intersex person speaks for themselves. This fact does not take away from the primary goals of the intersex movement, and is not in opposition to them. I am not sure why you feel that I am not advocating for the end of genital mutilation surgery and to raise awareness about intersex, but I am. If you read my entire blog, that becomes abundantly clear.

    Your comments contain some ignorant statements and an air of condescension. I decided to reply again to you to make my intentions clearer yet, but if you attempt to comment in the future, I will neither publish your comments nor respond to them, unless they are constructive and add to the discussion, instead of judgmental and making little sense.

  5. thunderboltjacksonAugust 2, 2010 at 12:09 PM

    "Intersex people are fighting to be left alone and left alone to recover from the surgical and medical abuse that has been done to us as a child."

    but isn't this exactly what claud is talking about? so many of the posts here deal with stopping that kind of usually unnecessary and largely non-consensual medical trauma.

    how is fighting for privacy to recover from past abuses a better option than fighting to never undergo those abuses to begin with?

  6. I think anonymous fails to realize that all people are people first, regardless of medical conditions. My son might be blind, but he is a child first and foremost and he will have his own opinions regardless of anyone else who is blind. Some people who are blind may want pity, others do not. It all has to do with each individual. I don't see why an intersex person can't be gay or trans, their gender is something completely different than their intersex condition.

  7. thunderboltjackson: Yes, this is what I'm talking about, and I completely agree with you. :) Having personal time to heal is definitely important, but I don't think that private time to heal from one's own experiences and publicly speaking out to prevent other individuals from undergoing similarly traumatic experiences are mutually exclusive. Speaking out about our own experiences and turning a critical eye to the perception and "treatment" of intersex individuals will help a greater number of people. Intersex isn't just some private issue you shouldn't talk about because it's shameful and you're a freak, etc. We have such negative ideas about intersex people because we've assumed them culturally. By speaking out and challenging ideas about intersex, we can generate cultural change. If how we think about intersex in our society changes, then how we treat intersex individuals must change, too.

    Britt: Yes, people are individuals, and do not solely represent an entire group of people just by virtue of identifying themselves as part of that group; they are a PART of that group, they are NOT that entire group. Sex, gender, gender role (including gender performance and gender presentation), sexual orientation, all of it are separate from one another, and don't need to group together in one of the two different ways mainstream society thinks they do. I would challenge the idea that it's common that disabled people want pity - something that the abelist movement has sought to address, but I totally agree with the rest of your post.

  8. I have no idea what anonymous was talking about. Is ze replying to the right blog?

    On 6 year olds not knowing- I think that's, again, society. Infants will sometimes play with their parts while getting their diaper changed and I've seen some people talking about doing things they later realized was masturbation at really young ages. Now, we should *not* be asking 6 year olds invasive questions. But surveys of consent-age adults may get answers about how the sensation was at that young.

    But this is just... so.. completely disgusting

  9. Dreki, yes, it is absolutely completely disgusting. And completely inappropriate to even SURVEY 6-year-olds regarding sexual function, let alone TEST it when they cannot possibly understand what is being tested and thus, consent to it. I completely agree with you.