BBC One Takes on Disorders of Sexual Development

by Thomas Roche on October 11, 2011

I’m pleased to see a very respectful article on BBC.co.uk about people with “disorders of sexual development” (DSD) — the category of disorders formerly placed under the “intersex”umbrella. The article precedes the documentary “Me, My Gender and I,” which airs tonight on BBC One at 10:35pm, UK time. (As far as I can tell, only UK viewers will be able to see it).

Here’s the blurb for the documentary:

What is the truth about the sexes? It is a deeply-held assumption that every person is either male or female; but many people are now questioning whether this belief is correct.

This compelling and sensitive documentary unlocks the stories of people born neither entirely male nor female. Conditions like these have been known as ‘intersex’ and shrouded in unnecessary shame and secrecy for decades. It’s estimated that DSDs (Disorders of Sexual Development) are, in fact, as common as twins or red hair – nearly one in 50 of us.

The programme features powerful insights from people living with these conditions, and the medical teams at the forefront of the field, including clinical psychologist Tiger Devore, whose own sex when born was ambiguous.

[Link.]

The term DSD appears to now be the preferred term in both the activist and medical communities, which have not always seen eye to eye — to say the least. Some authors have proposed retaining DSD, but changing “disorder” to “divergence,” to avoid the inherently pejorative sense of “disorder.” Other authors have noted that DSD is not meant to replace “intersex,” but clearly pejorative and inaccurate terms like “hermaphrodite.” Others class the term “intersex” as pejorative in itself, necessitating the term for DSD (which I personally find more potentially pejorative). Nonetheless, the BBC is using DSD to mean (as far as I can tell) everything that used to be called intersex, not just the medically inaccurate term “hermaphrodite.”

Nonetheless, it should also be noted that whichever “D” word you use, what is meant by DSD differs greatly from person to person; it includes a wide variety of very different conditions. One of the issues in defining intersex activism is representing what it is, because so many metabolic, physical and hormonal issues can be classed together, or not — depending on the speaker’s viewpoint.

Regardless, the article, to my reading, manages to remain respectful without sensationalizing. The article quotes the very eloquent Dr. Tiger (neé Howard) DeVore mentioned above, a clinical psychologist I know of from the amazing 2000 documentary XX, XY. In that film, Dr. DeVore talks with devastating frankness about his experiences growing up with hypospadias, a condition in male children where the bottom of the penis does not seal completely, leaving the urethra exposed. DeVore was subjected to 20 surgeries, starting when he was three months old and continuing until he was 19. The surgeries were hugely traumatic, and in DeVore’s estimation were all catastrophic failures. DeVore has since become a powerful advocate for ending all infant surgeries unless they’re medically necessary.

Other quotes in the article come from a woman named Katie, who discovered when she was 18 that she has androgen insensitivity syndrome (AIS). She was born with male reproductive organs and XY chromosomes — but because of her body’s insensitivity to androgens (“male” hormones) she grew up with a “feminine” outward appearance. She elected to have her testes removed at 18, now takes female hormones, and has an entirely female gender identity, though she acknowledges that in terms of her physical sex, she is neither male nor female. Katie has since been on Oprah with her mother, who is a physician, to discuss the issues of DSD/intersex. There’s a video clip about AIS here, but it’s only available to viewers in the UK.

A few quotes from the article that I found illuminating:

“I think we have very inadequate definitions of what sex is,” says Katie.

“But based on what we do have I can’t say that I’m either male or female in terms of my sex, although my gender identity is very female.”

Dr Devore would also like to see the definitions of sex widened.

“The tyranny of being forced to circle M or F (male or female) on every form I fill out, I’d like to see that change, I’d like to have a lot more options.

“Typically what I do is I circle the whole thing so it is ‘MORF’, M or F – that is my favourite way of responding to that question.”

[Link.]

As with many experiences in this arena, though, there’s a lot of heartbreaking ignorance, as shown in the experiences of “Janet,” who has congenital adrenal hyperplasia (CAH), a relatively common DSD where her body produces more testosterone than is typical for a female child, resulting in what appears to be male external genital development (actually an enlarged clitoris that looks like a penis) in a person with XX chromosomes and (in this case) a womb and ovaries. At least one member of her family was not supportive.

After Janet was born, it was difficult to tell if she was a boy or a girl. “When my grandfather learned there was a question of my sex, it was suggested by him that they just let me die,” she says…Male and female genitals grow from the same tissue, but testosterone makes them look and develop differently. So an enlarged clitoris can be something between male and female.

Living with this condition, says Janet, left her a “psychological mess” for many years.

[Link.]

Tragically, this sort of experience is all too common in people born with DSD, partially owing to what I consider a crazy emphasis on putting human beings into boxes — in every category, but particularly when it comes to gender. Being born with (in some cases, but not all) potentially problematic medical conditions is challenging enough for an infant — having to then face parents’ at times hateful phobias and anxieties about gender is more than anyone could reasonably ask of a child.

That program again is “Me, My Gender and I,” airing tonight on BBC One, assuming you’re in the UK.

Photo: Screencap of Katie on Oprah.

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