Tuesday, July 18, 2006

You Be Me for a While and I'll Be You

When I was in the Graduate Library stacks tracking down The Woman in the Body, I did my usual trick of perusing nearby books.

In doing so I found a fascinating book on intersex conditions (a.k.a. hermaphrodism). It was more a compendium of photos and explanation of genetic conditions than anything. Written in the 1950's, it covered some the more common XY chromosomal variations, such as Klinefelter Syndrome (Men with XXY chromosomes) and Turner's Syndrome (women with only an X chromosome), as well as conditions such as androgen insensitivity (XY genotype but female or ambiguous genitalia). I apologize if I have mischaracterized these conditions.

Sexual ambiguity is extremely interesting. Long before Middlesex brought an intersex protagonist to the Pulitzer Prize, academics were examining how conventional ideas of gender and identity are challenged by secondary sex characteristics. Natalie Angier devotes a chapter to it in her book Woman. Biologist Anne Fausto-Sterling made it the subject of her book, Sexing the Body.

Fausto-Sterling asserts as many as one baby in 100 is born with ambiguous genitalia. "Ambiguous genitalia" includes not only signs of the syndromes mentioned above, but simple structural variations in XY individuals. The clitoris can be long enough to resemble a penis, for example.

I read this statistic before I became pregnant with our second child. During that pregnancy I kept thinking, "What do we do if...?" Likewise, as a doula I now ponder how to be helpful to parents whose baby has genitals that defy easy characterization. If this ambiguity occurs in 1-2% of births, as Fausto-Sterling suggests, one does not have to work long as a doula before encountering it.

It seems that for many intersex individuals, immediate surgery to conform their physical appearance with one gender or the other is not the best course of action. Adults whose gender was surgically determined for them often feel misassigned, or uncomfortable with the notion of being labeled as one gender or another. The surgery, indeed the very need to KNOW a gender, is totally indicative of our discomfort with that ambiguity. We are a two-gender system.

I suppose the best way to support families whose child has some intersex or sexually ambiguous characteristics is simply to encourage them to learn about it. Refer parents to physicians, therapists, etc. who can answer their questions and deal with their emotions. This type of consultation and counseling fall outside the doula's standards of practice.

But doulas can help parents prepare lists of questions to ask. We can encourage parents to read about adults who were surgically assigned a gender and others who were not. We can be a safe place for parents to share fears and disappointments. As with any unexpected situation that presents itself to new parents (heck, to any of us), there will be an adjustment period that may include grieving the loss of the "expected" outcome, social discomfort at not fitting cleanly into cultural norms ("Is it a boy or a girl?") and confusion/ignorance about the situation's long- and short-term impacts (or lack of them).

And, of course, help them see that their child is so much more than a gender. It is a person, their person, their baby. Laying skin to skin, belly to belly with its parent, its gender is utterly irrelevant.

5 Comments:

Blogger Babylady said...

interesting.. I had never thought about the possibility of a client having a baby with ambiguous genitalia.
Have you found any sites/publications that might be helpful to parents?

1:49 PM  
Anonymous d. feldman said...

The Intersex Society of North America is a great resource for information for parents and health care providers.

7:24 PM  
Blogger doulicia said...

d. feldman, thank you for the link. I did not have anything useful to offer (but was going to go looking).

9:42 PM  
Blogger Lucina said...

Thank you so much for a thoughtful and sensitive post. Intersex is fascinating and complex. I've done a couple of interviews on this, so I've got some links handy.

There's lots of controversy. Some intersex groups see intersex as primarily a medical condition. Others see it as a question of gender.

In addition to ISNA, check out
OII
Bodies Like Ours
Intersex Initiative

Activist I've spoken to recommend that parents
-not permit surgery unless there's an urgent structural issue, eg problems with the urethra
-assign a social gender so you can answer the "is it a boy or a girl" questions
-consider giving your child a gender-neutral name in case the social gender turns out to be inconsistent with what happens to your child's body at puberty

It's complicated stuff. The appearance of non-standard genitalia is going to get the conversation started early, but it's even more disconcerting when, for instance, a teenage girl who's never gotten a period discovers that she's genetically male and doesn't have female reproductive organs, which can happen with complete androgen insensitivity syndrome.

I went to a workshop which talked about this a couple of weeks ago. If I remember correctly, the variations come because you can have a fetus that:

-doesn't make certain sex hormones
-makes hormones, but not at the "right" time
-makes hormones but is not sensitive to them so can't take them up

There's an intensely cool graphical explanation here:
Genital Development

5:06 PM  
Anonymous Anonymous said...

The estimate of 1% is an exaggeration. A more realistic figure is about one in 2,000 births.

Probably the best resource for supporting the parents and for educating the doctors who will care for the family are "Handbook for Parents" and "Clinical Guidelines for the Management of Disorders of Sex Development in Childhood," available here:

dsdguidelines.org.

9:13 PM  

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