Helping To Understand Intersexuality And Transgendered Intersexuals

AmBoyz Intersex/Trans FAQ

1. What is Intersexuality?

Intersexuality is a group of medical conditions that blur or make nonstandard the physical sex of the individual intersexual. They include Klinefelter's Syndrome (XXY chromosomes), congenital adrenal hyperplasia, androgen insensitivity syndrome, and other rarer syndromes.

Some intersexuals are born with genitalia that are "ambiguous", meaning not completely male or female. Others are genitally normal at birth but develop mixed secondary sexual characteristics at puberty. Intersexuals used to be referred to as "hermaphrodites", but we now prefer the term intersexual, as it does not have the connotations of being a mythical creature. That connotation has often led to our being dismissed in the minds of many people as not really existing. We do, however, exist, and it is time that people knew it.

2. How common is intersexuality?

Still being measured. About 1 in 2000 births (0.5%) have some sort of ambiguous genitalia, but there are other intersexuals who are not "caught" until puberty. According to Dr. Anne Fausto-Sterling, data suggests that 1.7% of the population has some degree of intersexuality.

3. How are intersexuals treated by the medical establishment?

This is a subject of much debate in the intersexual community. The standard treatment of infants and children with intersexual genitalia is to surgically modify them into "normal"-looking babies as quickly as possible. However, while such modifications look cosmetically normal, they often leave the individual with little or no sexual sensation, and sometimes an increased risk of urinary tract and other infections.

Also, some forms of follow-up care, such as frequent viewings by doctors and medical students, and the daily use of "stents" to dilate artificial vaginas in small children, would be considered sexual abuse if visited on a "normal" child. Many intersexuals have lasting sexual and emotional issues long into adulthood from such treatment.

There is also the issue that intersexuals do not always end up choosing to be the sex that their parents and pediatric surgeons decide that they will be. A sizeable number end up requesting sex reassignment as adults, which is generally more difficult for intersexuals to get than for standard transsexuals. Some would prefer to remain as they originally had or would have developed and not choose either one sex or the other. Those of us who are activists are against any surgical mutilation of infants, and believe that such "corrections" should be made by the child in adulthood or not at all.

4. How should the TG community deal with intersexuals?

Intersexuals have in many cases had a rough time within the TG community, and this has led to many of them being wary of working with transgenderfolk. Hoping to build a firmer bridge between these two communities, many members of which overlap, I list here some of the major complaints that intersexuals have had:

A. Don't express envy directed to those of us who had "SRS" in childhood. The overwhelming majority of intersexuals that I know who had infant surgery are unhappy with their situation. Remember, this was done without consent and usually not as well as the average adult SRS. Many mutilated intersexuals have a host of medical problems and sexual dysfunctions as a side effect of what was done. Besides, just because you might want it doesn't mean it's good for everyone. (A corollary to this is not telling us how "lucky" we are if we at least pass as the gender you'd like to pass as, if indeed we do.)

B. Don't hit on intersexuals who come to conferences, support groups, and activist groups. We've often had to wade between two separate and equally annoying responses to our bodies: disgust and fetishism. We tend to be pretty wary of anyone who seems to be treating us like an "exotic experience" or objectifying us. An example of this is the fact that the operator of an intersex web page had to remove her phone number (available for suicidal intersexuals to call and talk) from the page because she was bombarded with calls asking how to obtain sex with intersexuals. Make friends with an intersexual first; don't approach and ask for dates straight up, as you may be regarded with suspicion.

C. Don't "colonize" the intersex political struggle. Although there are many overlapping issues between TG and IS concerns (as well as many overlapping individuals), it is not in the IS movement's best interest to be completely drowned in the TG agenda. Solidarity is good, but appropriation is not. Showing up and standing with us when we speak or demonstrate is fine and appreciated, but let the IS folks be the spokespersons. Taking photos and then using them without permission is unforgivably irresponsible.

5. I'm transgendered/transsexual, and I think I might be an intersexual. Are my transgendered feelings caused by some kind of intersexuality?

There is way too little research data currently in existence to prove or disprove this. My personal feeling is that transgender, in all its form, may well turn out eventually to be a mild posterior-hypothalamus-only form of intersexuality. Then again, it may not. Because it is still completely unproven, we cannot say with any kind of certainty that feelings of gender dysphoria are indicative of any sort of intersexuality. They are indicative of gender dysphoria, and that's all we're certain of right now.

It is certain that some intersexuals do get sex changes, in both directions, and it is also certain that some intersexuals are firmly committed to the gender that they were assigned at birth, and are merely upset that their anatomy was rearranged badly. There are also some intersexuals who identify neither as male or female, but as something in between. There are also a few rare cases where an otherwise normal would-be transsexual discovers during their medical screening that they actually have an intersex disorder. So the two circles - transgender and intersex - do overlap some, but they are not considered the same thing at all.

6. I want to get a sex change. If I convince the doctors that I am an intersexual, will they be more likely to give me a sex change?

The short answer is no. The long answer is a little more complicated.

First of all, it is extremely unlikely that you will be able to convince a doctor that you have an IS condition if you don't. This is because the current medical definition of intersexuality is very narrow. It is limited to a handful of severe and relatively easily diagnosable syndromes, most of which involve either chromosomal or genital abnormalities. I am personally convinced that there is a far wider spectrum of borderline or difficult-to-diagnose IS conditions as well, but this is not the view accepted my most doctors and medical researchers. Telling your doctor that you "think you might have" some strange organs in you, or even describing a feminizing/masculinizing puberty, will not convince them if your blood tests come up without a recognizable IS condition.

Second, according to the Benjamin standards, all would-be transsexuals are to be screened for intersex conditions - and then turned down if they come up positive. Thankfully, many health care providers no longer follow the Benjamin standards word for word, or choose to interpret them differently, but the medical view is still largely that intersexuals are not supposed to get sex changes. Why? I suspect it has to do with the fact that sex-changing IS people contradict the comfortable lies that physicians tell to parents of intersexuals, such as the guarantee that they will remains the sex that they are assigned.

Being diagnosed intersex will make it harder, not easier, for you to get a sex change from all but the most progressive and sympathetic and brave health care providers. Even if they have no particular moral issue with it, they may be uncomfortable assigning hormones to a body that already has an unusual hormonal makeup, and may prefer to forgo the difficult task of calibrating hormones for months on end, and may refuse to help you. It happened to me several times.

7. I have strange reproductive or hormonal anomalies that don't fit into any of the current intersex conditions. My genitals are fairly normal. Am I some sort of intersexual?

Recently, at the True Spirit Conference, one of the intersex workshops was invaded by a whole crowd of desperate people, both FTM and female-identified. They had a whole host of unusual symptoms- masculinizing puberties of various severities, unexplained (and often life-threatening) uterine bleeding, abnormal and fluctuating hormone levels of both male and female hormones, immune-system problems, facial and body hair, and minor genital problems such as winged labia. None of these problems had been traceable to accepted intersex conditions such as CAH, or non-intersex conditions such as polycystic ovarian syndrome, or adrenal or uterine tumors. In fact, none of them had been adequately explained at all by doctors.

Were they borderline intersexual conditions? Personally, I think it's likely. Would a physician think so? Probably not. As explained before, the definition of IS is very narrow. How to get medical care, if you are one of these people? I feel for you and wish you luck. Sometime in the future, we'd like to compile a list of service providers who will deal with both transfolk and intersexuals.

8. I'm an intersexual and I want a sex change. What can I do?

As I said above, not all health care workers do the Benjamin standards letter for letter. Your best bet is to get a sympathetic therapist who is willing to advocate for you, and be prepared to interview a lot of endocrinologists. Be straightforward with them, over the phone if necessary. Ask them, I'm an intersexual, with (syndrome X), and I want sex reassignment. Do you handle cases like mine? Be a consumer. Ask how they would treat you differently, if at all. Put them on the spot, not you. Any that become offended by your assertiveness in questioning are probably not a good bet.

Surgical reconstruction of mutilated genitals is an even more problematic issue. You may have to have several more surgeries than someone with unmutilated tissue. Interview SRS surgeons - and then give us reviews to post!

If you do get sex reassignment, please be willing to be out about it, at least to medical personnel. They think that we do not exist, or would like to. They tell parents that we do not exist. We are the single biggest argument for stopping infant genital surgeries in existence. The more of us that are seen, the better. Let's drown their arguments in sheer numbers.

9. I'm trans. How can I help the intersexual cause?

A. Find ways to include intersexuals, or at least education about intersexuals, in your local trans organization.

B. Copy the Intersex Flyer For Parents and hand it out to every expectant or would-be parent that you can find. Leaflet OB/GYN offices with it. If they throw it out, bring more. Pass it around everywhere.

C. Ask your TG-oriented health care providers if they would give someone presenting with an intersex condition the same welcome treatment that they give to you. If they are fine about the idea of treating IS folk who want sex reassignment, ask if they are willing to be listed on a website. If they are, send us their names, cities, and professional contact information. We need to create a resource list, and why reinvent the wheel?

If our two communities can work together, we will cover more ground than if we are working alone. And as Benjamin Franklin said, "If we do not hang together, we shall most assuredly hang separately."