On Sunday, March 4, 2001, William Safire’s  NYT Magazine column was about the usage of prune vs dried plum. 

Intersex is one of the words that will bring the same consternation to an educated reader.  Is there a difference between ‘intersex’ and ambiguous genitalia?  Or a difference between dried plums or prunes?

For that matter, is there a difference between being unable to see and being blind?

Growing up, and I still continue to grow up, I often searched for information on CAH, or adrenogenital  syndrome as it was called then.  At the library, in health ed books, wherever I could.  

All along I was feeling lost, and confused. 

Part of the reason was my parents didn’t quite have the right word to describe me, to me.  They didn’t have the right definition, a label.  I hate labels, but sometimes they do make their way into the lexicon that makes the fabric that covers us…good or bad, nice or not so nice.  It fascinates me that words getting right to the heart of some things disappear from lack of use, or fear of use.  Usually those words are of a sexual nature or usage and or root.

My parents were afraid of certain things; things that were scary, things they couldn’t define, things they didn’t want to define, things that had to do with sex. There was shame, there would be explaining to be done.  The babysitters, the siblings, the relatives…

And the result was ignorance and shame.

Their belief was, don’t learn, refuse to accept other ideas and words that may not be congruous with the ones they were comfortable with.  And whatever you do, don’t tell the child.  She will grow up not knowing, not asking questions.  And it wasn’t just my parents.  It was hundreds, maybe thousands of parents with a child that didn’t fit into a box, and didn’t fit any labels. 

Were we girls? 

Yes.  And I like being a girl.  Never in a million years would I think of myself as anything but a girl, a woman.

But I also knew there was something different about me.  I just didn’t know what.  Instead, I grew up, spent many years looking around, asking myself, “What the…?”  

Then along came the internet.  It has brought of wealth of knowledge, especially to those who didn’t have access or the means to find the answers otherwise.

Now we are finding each other, asking questions.  And we are realizing, that in our 20’s, 30’s 40’s and older, we are still asking ourselves, “What the…?”, and “Why…?”  And oh, by the way, why didn’t anyone tell ME?

Then I realize, we are it.  We are the women of CAH who have made the life of your child a little better.  No, we are not ‘historical footnotes’.  I would like to even think I  was not an experiment by some doctor 36 years ago. 

 

And we are intersexed. 

 

Like it, don’t like it, embrace it or don’t. That choice is left to you, as a parent of a child who requires and needs a lot of explaining. 

All the love in the world will not explain it like words can, no matter how easy or difficult they are to use.

But it is part of me, part of my whole package.  It doesn’t make me less of a woman. 

It is part of your daughter with CAH.  She will grow up into a beautiful woman. I am a beautiful woman.  If you passed me on the street, CAH would not cross your mind. Growing up with the shame I sensed from my parents taught me how to pass for noraml really good.  CAH and all, I am normal..I am not a freakshow.   The word 'intersex' does not change that.  It never will.

Eventually she will ask, even look in the mirror and ask herself.  And then you, if you have been open with her.  If you haven’t been honest, open, and forthright she may go away for a bit, lost in another thought.  But the questions will linger, the search for a definition will remain, albeit buried. 

And she will look at the bills from her therapist and wonder why.  Why weren't they honest and forthright?

Avoidance, ignorance, and half-truths are wonderful panaceas.  But they only work for a short time.  There is more to your CAH daughter that those childhood years, please don’t spare her from the harsh realities of CAH and what it means.  Despite all the obstacles, and the paths of sel-exploration, I look in the mirror and see a beautiful woman, intersexed and all. 

You wouldn't know I have CAH if you passed me on the street, or have been one of millions I have had conversations with in the gorcery check-out line.  Growing up with the shame of our parents has taught us to pass for normal really well.

If you don’t like what I, and other CAH  adult women are, then you have, or will have some explaining to do to your child.   It may take years, maybe decades, but it will come out.  You can be dishonest now or you can deal with the truth later.

It’s a tough word.  Intersex.  The first image it brings to mind is one of gender dysphoria.  It’s the picture the media and news likes to spoon feed to viewers.  Anyone who may not fit a label must be this.  I know the first time I encountered ‘intersex’ in the same sentence as CAH,  I was horrified.

Noooooo, that couldn’t be me.  I like being a girl.  I am comfortable, love being a woman.  Those are the men or women trying to be another sex and all those doctors and experts must be wrong.  But then I read more.  And learned more. 

And I came to learn we are the models for the care you so longingly seek out for your child with CAH.   There’s not a CAH woman in her 20’s, 30’s, 40’s, and older that doesn’t struggle with the word intersex. 

Each time I correspond, talk with others…there’s a constant, “What do you think of the term intersex…?”  The emotions always run high and deep. 

Every time, however reluctant, there is acceptance, of who we are, what we are.  It’s difficult, but we are intersex.  As I’ve grown, I have discovered the shame and fear that was imagined by my parents is not there by those I love and cherish.

You can make yourself unable to see, but for the sake of your daughter, please don’t be blind.  It’s time put your own fears and insecurities aside and deal with the cold, hard facts of what CAH is and it’s impact on your daughter’s life now and forever.

Society does the same dance with the words, “Prune or dried plum.”  Which would your rather have on your plate?  It’s a great article.  If you can find it, read it.