I had never seen this program before and I found it disturbing on several fronts. 

Some may be surprised to hear me say this, but even I did not like what Dr. Glassberg had to say.  His comment that surgery is "not optional" was an amazingly broad statement to make.  The show’s narrator read a snipet from the American Academy of Pediatrics statement on ambiguous genetalia that was tailored to fit their format of showing a clear division of opinions.  If anything is clear, it’s the fact that this issue is not simply black and white so to speak.  Every case should be considered on an individual basis - period.

Another comment Dr. Glassberg made that bugged me was in regards to parents who may have a hard time dealing with their child’s physical imperfection.  According to him, those parents should definitely have the surgery done.  Personally, any parent considering genital surgery on their child just to make themselves feel better might consider stepping back to re-evaluate things and maybe take a closer look at their own problems.   

Here again, that word I very much dislike hearing in conjunction with CAH was everywhere - intersexed.  While this program seemed to be addressing intersexed people much more than CAH itself, couldn’t we just leave CAH out of it?  The whole idea where "ambiguous genetalia = intersexed = CAH" just drives me up the wall!  If they want to do a show on intersexed people, please do...I’d probably watch it and it would probably be interesting.  If they’d like to do a show on CAH, here again, please do...I’d definitely watch it.  Most CAH kids are not intersexed.  That is they do not have both male and female organs and/or chromosomes.  They are either male or female.  Suggesting that because, visually, it is not apparent which sex the person is, they are intersexed is idiotic.

I’ll tell you what bothered me the most about this program though.  I did not know it was on.  We got a call from some close friends of ours just as the show started telling us there was a show on about what our daughter had.  I thought for a minute about calling our parents and telling them to turn it on, but then I decided I’d watch it first and then tape the re-broadcast later that night and send them tapes if it was a good program.  After watching it, my only thoughts were that I hoped nobody who knows about my daughter saw it.  It bothered me that the friends who called to tell us it was on (who, incidentally, are the only non-family people who know my daughter has anything more than an "hormonal imbalance"...ie they are the only ones who know about the physical aspect of things) sat there watching it thinking this is what my daughter had.  While I certainly don’t blame them because the whole thing can be confusing to those who have not done the reading a parent might, it says alot to me about what the general perception of what my daughter’s physical condition would be to the uninformed.  Because what my daughter really has, CAH, was included in a program mainly about people who have genuine genetic or physically intersexed conditions, they are probably sitting there thinking my daughter will go through all the anguish and sexual confusion that many of the people they spoke to have gone through.  Maybe she will...and if she does, we’ll deal with that as a family when the time comes.  However, there is no physical or genetic reason there should be any sexual confusion in most CAH kids caused by CAH.  I don’t discount, by any means, the feelings those people expressed, but most of them obviously don’t have CAH.  It’s very unfortunate that the various causes for ambiguous genetalia, including CAH, can’t be kept seperate or, at the very least, clearly distinguished amongst themselves.

 

Sean Kelly